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CommentWelcome to the Twentysecond Vulvodynia Guestbook.
CommentHi, I am 20 years old and have had vvs for nearly three years now. I am so frustrated and depressed because nothing has worked so far for me. I've been on the low-oxalate diet for a couple months now but I keep messing up and eating the wrong thing. It's so complicated! I am also a former coffee and chocolate addict, so withdrawal has been really tough. What's the use in depriving myself if my pain stays the same? I have spent a lot of my parents' money on doctor visits and useless medications. I want to try biofeedback, but I'm afraid it will be another waste of time. Does anyone know of vulvar vestibulitis specialists in California who happen to be covered by Kaiser? I happen to be poor, so I can't really afford any treatments that aren't covered by my insurance. Also, who is Wendy? I read about her in the 2003 postings and I want to know how she cured herself, and how I can do what she did. I feel so alone and frustrated I'm tempted to opt for surgery so they can cut the painful part out of me! I'm getting desperate. I think it would be really helpful for me to be able to talk to other fellow sufferers and get some advice and support.
CommentHi,I suffer from a specific type of vulvodynia which affects my clitoris! It is called clitorodynia. I know it's rare but it exists. I've had it for many years and thought I had managed to keep it under control until ten days ago! I have a big flare up now which has kept me home from work as I can't get dressed! I have a 2 year old daughter and I'm 6 months pregnant. I'm not psychologically very stable at the moment...I'd like to hear the experience of other women who have vulvodynia and are or have been pregnant.My support group consists of my husband who is wonderful and supportive and my mom who is also. I'm also followed by a doctor and a psychologist but unfortunately no one can make this thing go away. I'm sad and angry and frustrated...I aslo fear for my daughter...what if she ever has this??!!Thanks,Dom
CommentA great book that everyone should get cause its FREEEEEhttp://candidayeastinfections.com/information.htmNo S/h nothing! I ordered some free info from the CAndida Wellness Center a few months back thinking id get a pamphlet, but it came today and it was a book that they put together. Its WONDERFUL!Had my QX test done and posted and have my first therapy this friday and get my herbs and homeopaths soon too that I ordered. I am doing a parasite cleanse which is very important I have found out adn its in the book too that I just got. Parasites and yeast/fungus go hand in hand and I learned that you should never take somehting to boost the immune system until after a parasite cleanse or the parasites could benefit from it. SO I am doing a parasite cleanse then a yeast/fungus detox and then taking a good probiotic to replenish and if you dont get more good guys in there the bad guys come back, and then doing a homeopath for my immune system and cellular function. Plus doing energetic therapy with the QX machine.I had a GREAT 5 days and then ate some Chinese food and within 2 hours was not so good adn still am not and its been 3 days. But I ate it twice. Orange chicken, pork fried rice an egg roll and hot mustard. I had a craving, what can I say! I really wasnt eating strict before that either and still felt great.
CommentMariaWendy is a friend of mine. Contact me at the above address and I can get you her info.
CommentCandi, Just read about ur tests u had done, sounds pretty impressive it'll be interesting to see how you get on with all those treatments!! I'll look forward to reading your updates. Yes as for any diet I've decided im useless, i crave anything i know i cant eat but I'll try and persevere sugar is soo hard to reduce though the iced buns and choc bars in the shops look far to temptin!!
CommentYou know that commercial where whatever the people eat it sticks to a body part, like tha lady in the pastry shop eating a cinnamon bun and when she turns there is one on each butt cheek? Just think of it like that.The QX can desentize you to your allergies and sensitivities so I am going to ask if it can help us to not crave sweets. I ate some Black Forrest cake last night since I had company over. I am a carb-o-holic and a sugar junkie. Not really craving sweets that much anymore though. Ill keep posting about my therapies. And if the QX doesnt do anything for me then Ill post that too so noone else wastes any money. I just have come to realize that I need a complete lifestyle change. I was on guai for FMS, and have gone off of it. I need my herbs and they blocked my guai so until I get my body detoxed and then replenished with only good things, the guai will have to wait and with any luck my overall better health may help with the FMS pain too and I wont have to go back on guai at all.
CommentI have a success story that may help some of you. I have read here & other places that sometimes the pudental nerve causes the pain some of us are experiencing. My vulvar skin is fine, and I have never experienced the skin splitting. I did have unbearable pain (burning, stabbing) in the vulvar and urethral area and extreme urinary frequency (sometimes every 5 minutes) with bad burning on urinating. I have been to 16 doctors. I do not have a urinary tract infection - been checked multiple times. Have been to 2 PT's who deal exclusively with women who suffer like this - got temporary relief, but the pain always came back. 10 days ago I had a steroid epididural (epidural refers to an area of our spines and is not - contrary to what I thought - exclusively something doctors give to women giving birth.) My pain went away instantly and has not returned. The doctor (a physiatrist) says I had inflamation that was causing the nerves in my lower spine to react inappropriately and caused all the pain. He says one shot may be enough to stop the inflamation (and the pain) or I may have to repeat the procedure. It can be done up to 4 times yearly indefinitely. I asked what the steroid was and he said Kenalog. I feel like he has given me my life back. I wake up smiling every day. Goood luck to all. I hope this info helps some of you.
Commentthere was a post from someone named wendy in july 2003....does anyone still speak with her? Im interested in more info about how she became pain free.
CommentTo Dr. Howard Glazer, who hosts this web site , do you ever read these posts? And if you do, do you have any new information you can give us? Do you read any thing in here that is really bad to do? Thanks!
CommentHas anyone had a baby who has had vulvar vestibulitis? I have been in"remission" for a while, but I am concerned about a flare up after I deliver.FYI- I had vulvar vestibulitis for five years. Acupunture, physical/manual therapy, and dietary changes really worked for me. It took a long time to figure it out, but we finally nailed it!
CommentAmy-what do you mean by dietary changes specifically?The VPF (vulvar pain foundation) has a support system for women who become or are wanting to become pregnant that have or had VV.You can go to their website www.vulvarpainfoundation.org and their phone # is on there, you can call and ask for more info.
CommentWhen they start a new guest book, why can't the host put a note on the bottom of the last one telling us there is another one?
CommentYa'll please go here and have a letter sent ot your senatorwww.citizens.org Click on Take Action, it only takes about 30 seconds to fill out your infoWe dont want the FDA to decide which supplements we can and cannot buy!!!!!
CommentFolks...my 17 yr old dtr (virgin/no sex of any kind nor touching) has severe burning in the Skenes gland; no one knows the cause. Urologist gave antibiotics which caused nausea; have read SO much now...and Dr. Solomon's info sounds most plausible. Would appreciate feedback. The only relief she gets is from Uristat and ice pack...but can't believe longterm use is very healthy. We're going to try Low Oxalate eating, plus Cal-citrate, Ox-absorb and perhaps the NAG treatment. Have any of you had burning with just this one tiny gland?
CommentQuestion re: Skenes Gland:My 17 yr old dtr, virgin, no type of sexual encounter, developed burning pain in this one particular gland. Only relief comes from Uristat and ice pack; Urologist gave strong antibiotic which would not 'stay down'. Have read net-info until eyes are falling out. Dr. Solomon's Oxalate treatment sounds most sane for young girl. Is any one out there had THIS particular pain? How did you find relief? It is definitely a burning; makes her cry. Pls. post response in Guestbook. Thanks.
CommentAmy, would you mind sharing your success story with us? Eg. exactly how did acupunture, physical/manual therapy, and dietary changes work for you? What did you do? How long til you noticed a change? I'm sure there are a lot of desperate women here who'd love to hear about it. Thanks!
CommentDear MsMagnolia: I have two daughters 16 and 10 so believe me I know you are hurting seeing her suffer. I've been reading and posting here for a couple of years now because of my wife's problems so I've learned a lot. Antibiotics should only be prescribed and taken if there is proof of an infection. Many of the symptoms written about here have no know cause or treatment so the doctors do what they know how to, they prescribe antibiotics and various creams or ointments. I hope your daughter gets some relief from her pain in the mean time there are some simple things that might help and maybe you've already thought of them but here goes. Do not have here use any soap at all near her vagina or rectum, soaps or body washes are loaded with chemicals and are very irritating. Use only water it will do fine. Even though her pain is in one specific area since there is no definite reason given for it try to do things that would relieve pressure and restrict blood flow, for example no tight fitting underwear or clothing. Have her wear cotton underwear not synthetics they don't breathe as well. Many women here believe their pain could be associated with nerve impingement. Has she suffered any trauma to her groin? think back maybe it wasn't recently but is affecting her now. If so there are therapists who treat this nerve entrapement. Try to stay strong this could be a long and difficult road. I'll pray for you both. Frank.
CommentMsMAgnoliaAlso sugar is a no no for us in pain. I have the burning in the Skenes gland too. It didn't start out that way, but has been like that for months now. Also has her urine pH b een checked? The burning is worse of we are too acidic.Eating mostly low ox foods plus LOW carbs and no sugar OR CAFFEINE helps me. I find that high oxalate foods dont really bother me. When I eat sugar I am in more pain.Have her stay away from vitamin C. Dr. Solomons said no more than 250mg a day of it, I dont take any at all, plus multi vitamins are so full of chemical crap that I wont take one of those either. My herbalist told me to take Spirulina. She gave me a wonderful handout on it and its full of all the vitamins and minerals and fatty acids we need, plus a ton of other things. It is however an algae so make sure there are no allergies to algae there. They arent as strong as a multi vitamin, but we should get most of our vitamins from our food anyways. Plus Spirulina is all natural, no additives or chemicals which can also bother us. It also has all the B vitamins which most people lack. We need that especially for our inflammed nerves. I feel for your daughter especially since she is so young and has not had a relationship yet. Have you read up on fibormyalia yet? MAybe go to www.fibromyalgiatreatment.com and read over some of the symotoms of FMS. Things that people with FMS feel are normal to them so they dont know any different until its too late. Phosphates can do the same thing as the oxalates and cause irritation.ITs worth checking into. Ive had FMS for as long as I can remember now, but when I Was your daughters age, my aches and TMJ and lack of energy was just me growing up LOL
CommentI was diagnosed with LS in 1989. I had 3 laser surgeries to get rid of it from 89 to 91. The doctor also said I had vulvodynia. Now I am having specific problems for about the last 5 years and no doctor seems to be able to help. The left side of the vulva wont heal and it's been 14 years. It is still red, raw and painful. I was told I had too much laser surgery. I am considering going to a burn unit of U of M. I am at my wits end. Where can I seek advice? I think I may have multiple problems. I really need a doctor who knows what they are treating once and for all that will help me recover. I will travel anywhere. I thank you.
CommentJ Lynn- One of the Yahoo groups is specifically for LSI dont know the exact name, but you can go to Yahoo.com and click on GROUPS and there should be a search you can do there. Type in the subject. I found a few VV groups that way. Maybe someone there can help you find a doctor specifically for LS.
CommentI would love to here more from Amy the lady who wrote about acupuncture helping her because that is something i am very interested in trying. Amy if your around please tell us more!!
CommentHi everyone, I was reading previous postings and I read that the steroid creams can make VVS problem worse. I did stop the cream for a few days because I thought I was getting worse, then, started it again, and thought it was helping, but now I am back to the same. So I am stopping for good, Not sure what to do?. My Doc. appt was for 4/12, but they had to reschedule to 4/22. So now I need to wait longer. I just started taking the calcium citrate, still need to get the other vitamins and do better with the diet. I am doing good avoiding sugar and that helps a little. I know it is not helping that my job is stressful, my daughter is 3, as cute as can be, but does not sleep well, so I need caffeine to wake up (or at least think I do), felt like I needed to drink even though everyone says to avoid alcohol, despite everything, I wanted to try and have sex anyway, but my husband did not want to. It has been a long time. I know that he was trying to be nice because he knows I am not better, but I was willing to try. I try to talk to my friends about my problem, they try, but they do not understand. So sometimes I just cry. As you all well know with this problem you always know it is there, can not get away from it, and not sure how long it will take to get better. I am not a control freak, but there is no control over your body, until you get it under control?... I guess I should not be to upset, my pain is mostly an irritation or ache, sometimes a stab, with the exception of sex or using a tampon, I am just uncomfortable and can sort of deal. Form what I see it sounds like some people have it a lot worse; my fear is the worst is coming. Believe it or not I am trying to stay positive and I am usually a very optimistic person. I will have better things to say next time!!! Candi I really appreciate all of the info you post. I do not always have a lot of time and reading your info it really helps. You should become a Doc or Physiatrist, you have read so much you probably know as much as the Doc?s. In reading recent posting Wendy?s name was mentioned a few times, which guest book did she update the info that made her better. I have to beat this and will!!!!!!!!!!!!!!!!!!
Commentnewly diagnosed frustrated and confused but find solace coming to sites such as these and knowing I'm not alone and that there is some progress being made on treatments if not cures. I would like to have a handout explaining vulvodynia to all the drs. who saw me before I figured out on my own from reading and researching and went to a dr who specializes in this syndrome. I'm feeling better but feel hormones and calcium are not going to "cure" me. biofeedback sounds promising.
CommentWendy only posted in the last guestbookShe was never a member here, she just came across this site one dayShe did the calcium citrate with magnesium before bed, low oxalates, no sugar, low carbs, Grapefruit seed extract (liquid) and Olive Leaf (caps) She also uses muscle testing so she wont use or eat anything unless she tests positive on it.
CommentCarolynn - I try my very best to be positive too, but i still have my down days, i came home from work yesterday and cried all evening and managed to wake up this morning and cry too, altho i dont experience excruciating pain all the time, only during sex, i find that just the constant chronic burning pain that never goes really gets too me, its just very tiring and can really get u down, its the fact it just never stops, there is never a time when u can breath relief and just experience the absence of it. I feel alot more positive this morning after my good crying session, i think we all need to cry sometimes to vent are anger for having this problem but it is so important to stay positive too. It is a very difficult subject to approach with anyone and i find that hard too, if ur neighbor or somebody else asks u how u are u just have to say yeh im fine, but inside u want to tell them that ur not fine u are constantly in pain!! if it was chronic pain in the back or leg then it is easy to mention and people can sympathise but with this it is different. I do worry that mine will get worse too but i have realised with help from reading other peoples posts that u cant dwell on it, u have to feel lucky that its not worse and u have to get on with findin a way to get better even if the options take time, dont ever give up and fight it til it ends.
CommentThis is my first entry, but i have been reading and following lots of tips and thoughts to fight this awful thing that we all have. I'm writing to tell you all, that as of Tuesday of this week (April 6th, three days ago), i've been taking Calcium Citrate, fluoxitine, daily vitamins, chromium picolinate, iron, acidophillus, and eating yogurt and only eliminitaing the list of high oxolate foods from my diet and i am already feeling better...maybe it's too soon to be excited. My husband and I have had successful, painless intercourse for the first time last night in over 6 months!!! I can't tell you how happy I am today, and I couldn't wait to get to work so I can post this message, hopefully giving you all some hope. Everyone's body is different and we all have different levels of severity to this problem. BUT, I believe there is hope. AND if i continue to feel better, i am going to cancel the surgery i had scheduled for April 19th! The surgery is to remove the vestibular glands that swell near the opening of my vagina and make it impossible to have pain-free sex! My only worry is/was if the scars will then hurt later. But like i said, i may cancel the surgery all together if these vitamins and supplements keep working! I pray for you all. I have been through this struggle twice now. Presently, this is the second time. I fought it over two years ago, that time which lasted about 8 months. I became severly depressed and went on fluoxitine. It may have been coincidence, may not have been, but the pain went away and once again i was enjoying pain free sex. Could it be the fluoxitine again that is making me feel better, or is it a combination of the vitamins and supplements? I don't know, and i don't think anyone will ever know, but for now......this works for me!!! Best of luck to you all in finding some sort of healing and/or comfort. I thank God for this website and for all of your comments and suggestions. I couldn't have done it without all of your help! Thank you ladies!!!
CommentMy vulvodynia is due to an entrapped pudendal nerve as a result of vaginal childbirth. I learned how to find help at www.pudendal.info. I'm now under the care of doctors who have helped a lot of people recover. I'm so glad I've finally found the right help!
CommentHey all you beautiful women. so comforting to know you are out here if I get overwhelmed. Which I am. I have had this 2 years, I am sticking to the diets, no sugar, low carbs. But nothing is happening!! I first got signs of this after I had sex with my boyfriend for the first time. Immediate yeast infection. Cleared that one up, sex again, yeast again. I was told by my dr that you cannot get yeast from another person. So I kept have sex and kept getting yeast. But then it was different from yeast, It felt like my vulva was swollen to the size of an innertube. All I could do was lie in bed with ice between my legs. It feels to me like it has to do with yeast, since that is what I got everytime we had sex, And now I am a yeast factory, since we are still having sex, Not very often, since most of the time it is unbearable for me. Although when I do, there is a slight amount of blood on the toilet paper, this ever happened to anybody? I just feel that mine is related to my boyfriend pumping me full of yeast every time we make love, It has to be yeast. I used to have pretty good days, but lately I am in agony all the time, Everything hurts. Walking, sitting, driving in the car, EVERYTHING Can anybody help me?????
CommentDonna B- Listen to what your body is telling you! If you feel THAT strongly that your problem is yeast then it probably IS. I had a strong feeling mine was fungal related and i just had the QXCI testing and it confirmed that I have a strong reaction to a fungus. I am now doing a fungal detox and a bacterial detox because I got bitten by a tick adn that actually came up on my test. I am also taking a probiotic and Spirulina plus an enzyme. I am doing homeopathics though for now. They detox and repair and then I will go on to taking the Garden of Life products after all is done if I can afford them. BUT after the fungal and bacterial detox I will be doing a parasite detox and then after that building the immune system. It all goes hand in hand. The parasites surround the fungus and eat is (gross) this all in turn causes a poor digestive system since its filled with all these little creatures and it causes a poor immune system which in turn causes MANY different diseases and conditions. I have learned that you cant take somehitng for your immune system until AFTER the parasite cleanse and fungal cleanse or the bad guys can reap the benefits. ITs all basically detoxing, rebuilding and replenishing.You NEED to eat no sugar and low carbs and minimal fruits (sugar!) but you have to rid the bad guys and replenish the good guys too and my dear your hubby or BF has to do the same. I dont give a darn what doctors say, yeast CAN be passed back adn forth and my dear hunny is being treated as well or its nothing sexual for him. He's lost 20 lbs too! He gets athletes foot so I know hes got a fungal problem. Heres a site that says you CAN pass it. Check out #8http://www.mercola.com/2004/apr/7/yeast_infections.htm This was posted on my other group since we had been talking about passing candidaSO my course of therapy is as follows (and still muscle testing myself to know how many and if I react to it, but when I get homeopathics from my QX lady, she tests on me first so I dont have to :O)````````````````NOW:Fungal-Fuge (homeo detox, finish the bottle)Bacterial-Fuge (homeo detox, finish the bottle)Probiotic (test on 3/day)Spirulina (test on 5/day)Propepisa (homeo enzyme, repairs the digestive system, bottle and tastes like Vodka EWWW)``````````````````NEXT:Ameba-Fuge (parasite detox homeo, bottle)ProbioticSpirulinaPropepisa (enzyme homeo, finish out the one bottle)```````````Followed by:Probiotic- From now onSpirulina- From now onSystemic enzyme called VitalZyme- From now on (OmegaZyme by Garden of Life is even better but I cant afford it, this one is really great too)Immunopoi (homeo immune builder, and when thats gone I will have to find somehting else for up keep daily, most likely will spend the $ on RM-10 by Garden of Life````````````````````````Will be doing a heavy metal detox sometime as well. Maybe a blood cleanse too. But other things firstThe new 2004 Garden of Life catalog is out, I got it free at my new health food store and it tells all their products and what they are used for and how much to take. Its a really great catalog.
CommentThis is to all of the women who seem depressed about their situation. I was just diagnosed with vulvodynia this morning at the gynecologist. I was nervous in going because I have previously been diagnosed with HPV four years ago, and realize I am at high risk for cervical cancer. So I got into the office, the doctor came in, and poked in prodded (as the nurse practitioner had done last month) and she said well I know what?s wrong! She asked if I would like to know the name of my disorder, of course I said yes.... She said "it?s called vulvodyina" and my immediate response was "My vagina is depressed!?!" She replied, "excuse me?? Of course for all of you Sex in the City fans you might remember Charlotte and her depressed vagina as Carrie called it. Regardless I couldn't stop laughing! All the way home I was calling my girlfriends and sharing my interesting news... as I never thought Sex in the City would hit this close to home! Through all of my research through out the day I do realize the seriousness of our disorder. I know that I am a VVS sufferer, and that this might be a long ride to suppress my problem (especially with my addictions to everything I have to monitor in my diet!) However ladies, keep your heads up! We didn't do anything to "deserve" this disorder. We will all work through the pain together and get our vaginas UNDEPRESSED! Don't be afraid to share the news with those girlfriends close to you! If they are good friends they will help you through this... who knows... one day it may hit them, and then they will be turning to you!
CommentTo Candi: You wrote a great post responding to Donna and of course you are right. I just wanted to add a couple of things.Us guys handle and touch many things during the day. I got into a habit of washing my hands before being intimate with my wife and I think it's a good idea for everyone. I also feel oral hygene is very important, we can pass all sorts of bacteria from the mouth to the vagina. I don't just mean a quick tooth brushing but a good check up of the gums and a regime of daily cleaning and rinsing with something like listerine. I also read that semen can uspet the acidic balance of the vagina, so if you have frequent vaginal intercourse the semen can be a contributing cause of yeast infection. Try either condoms( ones that do not irritate) or practice some other form of sex to see if it helps reduce the occurance of the yeast. I know that as sex with my wife is less frequent so is the yeast infections and urinary tract infections. Best of luck.
CommentNo one seems to want to notice my post - you all want to believe it's what you eat or the supplements you take - the shot I had worked. I'VE BEEN PAIN FEE FOR 3 WEEKS. Listen up - it worked. None of Wendy's bullshhit and Candi's herbalist crap -listen to this - I DON'T HURT ANY MORE - READ MY POST!!!!!!!!
CommentRoberta - Many people here have VV for many different reasons, you are lucky that you have found help for your problem but for others it may not help. Kenalog is a corticosteroid and many of us have found that topical corticosteroids have just made the problem worse so u can imagine why we are all not jumping at the chance to go for your treatment. For the people who suffer the yeast problems i know that topical corticosteroids can make yeast 100 times worse so would it not be the same for some injected into our bodies? There alot of people out there who have gained relief from dietary supplements, changes in diet or herbal remedies as well as prescribed drugs and physical therapy, that just shows u everyone has their own individual case and no one thing can help everyone, god if only it did!! I've had my worst week ever with burning pain so im now seeing whether a change in diet will help, most of us are willing to try many things and some people feel drugs are only a mask of symptoms not a cure, it may or may not be the case but everyone is entitled to there own opinions and should be allowed to decide for themselves. Thank you for your post as it may help others out there but you cant put down other peoples ideas, they are only posting there progress like you and if they can find things to help, then that could help many people too. Candi and Wendy seem wonderful people to me, even if im not taking the exact same approach as either of them, i welcome, read and sometimes try things they have found out, it doesnt matter because we are all fighting the same battle which is too be rid of this pain!!!! i hope u continue to have success but u have to understand no 2 of us r the same in our opinions and what we are suffering and u have to understand that.
CommentROBERTAYou need to watch your language AND your attitude here! Other people have had MANY shots and they dont always work! AND YES I HAVE HAD ONE DEAR!!!!!!!!!!!!!!!!!!Obviously it didnt do a bit of good. WENDY is better and has been for 6 years sweetheart so her "bullshit" works just as well as your shots worked for you.So my choice is Wendys "crap" which are herbs and diet. We all dont have a nerve problem. Get over yourself! Not everyone has the same problem you do. If you have read all of the guest books then you would know that.You arent the only one here posting that is well. Stop being such a bitch on here. And my herbalist CRAP is working just fine after only 3 weeks.Not only for me but for my friend on another board who is doing the same thing. I have been able to have sex now after many months,so you can stick THAT up there with that stick you have in your bum!Good for you the injections work, I talk to others on other boards daily who have had MANY over a course of time and they had no luck.After one, I didnt want anymore.And I wasnt even in that much pain at that time. So dont go and tell everyone that running out and having an injection is a 100% cure. ITS NOT!ANd just for the record, there are women who used to post here that have talked to Wendy and they are getting better. WITHOUT shots. Dont bring in your nasty attitude. Its not welcome here. You can share your success here and leave it at that. Plus you should know tht there have been posts on this site as well regarding this and some have been pain free for a little while and though they were cured and then the pain came back so they got another shot and so on and after awhile, they stop working. Maybe that wont happen to you. But you need to read other guest books and other support sites before you go and get all hateful.If you did actual researh and talked to others who have done the same thing, you would know that and wouldnt run on here and say its a cure. I dont see that Wendy or I or anyone else for that matter has been so awful to YOU now have they?But dont attack me without expecting something back. I certainly didnt deserve your attitude, but you definately deserve mine. God put on this earth what we need to heal. Maybe you should go talk to Lauren, the owner of vulvodyniasupport. She is well from the herbal "crap" too.So get off your broomstick and dont go and preach to the choir that your shots are a cure. Only if you have nerve problems. YOUR "bullshit" didn't work for me or many other women. So now why dont you go and read a dictionary and learn a few new words that wont offend the other women here.It's uncalled for. Oh and for the others who know herbal CRAP works, there is a new holistic GYN in my area!!!! :O)Next to my new health food store. YEAH!
CommentFrank- We cant have less sex tho! LOL Wash those hands, brush those teeth and get treated for candida with your lady.My hubby works for a dental lab so he has the cleanest mouth in the world. Hes actually near obsesive compulsive when it comes to his mouth. He has 2 different toothbrushes with different softness and a tongue scraper and the whole nine yards. He carries a toothbruh wth him too. :O)Humans in general should be cleaner. I have seen women (dont hang in the mens room) who have left the bathroom without washing their hands. Thats just gross. I am determined to get my inside just as healthy as my outside.The book Patient Heal Thyself is really great. Jordan Rubin was near death from Crohns disease and is healthy and looking pretty darn good these days. Oh and that is due to herbal "crap" (sorry had to stick that in) Dear Roberta ticked me off for the next few minutes. I'm a Sagittarius, its my God given right to be nasty and I never was on here so for her to be brings out my Sag side. And she well deserves it.ANywho, be cleaner and healthier and feel better! And diet plays a huge role in my pain.
CommentTo Roberta: I don't read and post here to be insulting, I do enough of that elsewhere. There are so many variables and different symptoms associated with Vulvodynia that it is unreasonable for you to assume what worked for you will work for everyone. Obviously you have gotten relief so you feel very strongly but many have tried the same treatment and failed. If the onset of pain, burning, itching, tearing, thinning and any other problems of the vagina was brought about by several different causes then it makes sense to me that it would require different treatments to relieve or reverse the symptoms if possible. You are all in some kind of physical and emotional distress. As a husband I'm emotionally upset for how my wife suffers and for myself. I can give her pleasure but at a price, I can be sexual and get pleasure but not without hurting her. I know not all of you can have sex but some of you can to some degree. We have to understand that while some women have been living in pain for years there are those who are just beginning to have pain. I think for this reason it would be kinder and more helpful to show a more positive attitude and open forum. I don't accept everything I read here as great advice but if it giving relief and hope that's a good thing. Happy Easter to those who observe it and best of luck to everyone.
CommentI was wondering if anyone had a good internet source on a low oxalate diet. I wanted to read up on which foods fall into which categories. Thanks!
CommentMichelle, I just ordered Dr. Glazer book and another book, I think it has details on the low ox diet; I wanted more details on it too. I will let you know. In one of the posting above it mentioned acidophilus, when I was incorrectly diagnosed with chronic yeast, I was told to take 3 to 5 a day and I did feel better, not 100%. I stopped taking them, thinking that yeast was not my problem any more. I am going to take them again and maybe along with the other vitamins and diet change, I will be well again. I know the diet has to be low carb; I love bread, beagles, pasta and all that good stuff. Does anyone know if just cutting back would have the same effect? How long does it take to know if it is working? I guess I can try both ways and if cutting it out works, that is what I will do. I know stopping sugar did not take long, after 3 days I felt a difference. The other day I drank Coke and ate rice krispie treats, and Easter chicks and sure enough it made it worse. So I know to AVOID sugar and that helps for me!
CommentMICHELLE This is the best resource online that I could find for the low ox diethttp://www.branwen.com/rowan/oxalate.htmThe vulvar pain foundation has a cookbook too!!!! Go to their website www.vulvarpainfoundation.org and you can print out an order form. They were coming out with a second cookbook as well but I havent renewed my membership and dont know if it came out already. It is $40 a year for a membership (you dont need to be a member to get the cookbooks) and with the membership you get newsletters that give updated info on new foods that are tested. It is really worth is.CAROLYNN_ You should stay away from sugar and those yummy bagels and breads for about 3 months at least while you get your yeast under control. Wendy (who is pain free I might add) can now indulge in those bad treats and eats sinful sweet things, but it took awhile to get to that point, At first she would get flares but then after awhile she doesnt get flares from the bad things. She doesnt eat that stuf all the time everyday, but on Thanksgiving of last year she told me what she ate and I would have been sitting in fire if I ate all that yummy badness. I fel better when I dont eat all of that too, but its so hard not to! The past 2 days I ate so much candy that I am paying today. And last week I was able to have intercourse. So food does play a role in alot of us. Sugar s abd bad bad for everyone. Even those who are not in pain like we are. You can do it! My QXCI practitioner and my herbalist say this, WHITE BREAD MAKES YOU DEAD! I said that today when I went grocery shopping. I dont really crave breads or potatoes anymore just sweets. Mainly Reeses PB cups. :O)
CommentThe second Low Ox cookbook is out!http://www.vulvarpainfoundation.org/vpfcookbook.htmI can never get the VP's website to come up when I type it into my bar so I always have to go to google and put in vulvar pain foundation and hit the linkBetween cookbooks #1 and #2 you will never starve thats for sure!
CommentThis is my first time posting to a guestbook. I was diagnosed with VVS after the delivery of my child 9 months ago. I am significantly better than when I was first (and FINALLY) diagnosed, although I am not 100% pain-free. As I understand from medical literature and from reading reports from other women who have VVS and other forms of vulvodynia, I think I am fortunate to have a comparatively mild case (although I constantly worry that it will become worse, especially with our next child). I mostly have pain on either side of the vaginal opening that occurs with sex (which feels like a raw cut or abrasion is being touched), and for a day or two afterwards (I get redness and some swelling of the vulva and a more generalized irritation). I am able to tolerate tampons, gentle pelvic exams, etc. without pain and I rarely notice anything throughout the day. I thought I would share what has given me partial relief thus far in case it helps anyone else. Before the diagnosis was made, I could not sit comfortably and sex was completely out of the question. I was initially treated with Valisone cream ( a medium potency steroid) in the mornings and Lidocaine 2% jelly at bedtime. I used this for approx 6 weeks, and actually had a lot of relief within the first 4-5 days. Because of the thinning of tissue that can occur with prolonged use of topical steroids, I have weaned myself almost completely off the Valisone. (My gyn says that it can be used 1-3 times per week without risk of tissue damage;however I've read opinions from other doctors who recommend it sparingly, if at all. I use it at most a couple of times a month--if I get REALLY inflamed after sex. I would rather be safe than sorry, because the thinning of the tissue, if it occurs, is irreversible.) I use the lidocaine jelly anywhere from 5-30 minutes before sex, and for me anyway, it has been a Godsend. (So far, my husband says he doesn't notice himself getting numb, but I've read that if this is an issue, you can get a prescription for Lidocaine 4% liquid, apply it to a cotton ball and hold the saturated cotton ball against the painful areas for about 10 minutes prior to having sex) I also take Diflucan 200mg once per week ( I have a long history of documented yeast infections), Calcium citrate twice a day, lactobacillus acidophilus twice a day, Estrace topically at night, and I try to follow a low-medium oxalate diet. I seem to be able to eat small amounts of some foods with a high oxalate content without any increased irritation, other foods like peanuts or beer I can't seem to tolerate at all. One thing that I have been trying over the past couple of weeks is Ibuprofen 600mg after sex--it does seem to help quite a bit with me getting so inflamed afterwards (I read that anti-inflammatory medications are sometimes used in the treatment of interstitial cystitis, a related disorder, but have never read anything about it being used specifically for VVS-I look at it as not harmful and possibly helpful, so why not try it?) I also follow vuIvar hygiene recommendations I found on the Internet--absolutely no soap; rinsing after urination (I'm not really strict about this one); white cotton underwear laundered in Dreft and run twice through the rinse cycle. I also recently ordered The Low Oxalate Cookbook, and the Vulvar Pain Foundation ( who publishes the cookbook) sent me some literature which made for some interesting reading. A copy of their newsletter was very informative as for what treatments are proven to work, what might be helpful, and what to avoid. I am considering having my urine tested by their lab for oxalate content, however the cost is $350, and I was wondering if any one else had done this, and whether or not they felt it was helpful. I also noticed that a couple of people had some improvement with fluoxetine (Prozac). Has anybody had any success with Elavil (generic is amytriptyline)--I see this in the literature a lot? I was also wondering if anyone else has a problem with recurrent yeast infections (documented ones) and what things they might have tried that worked to get rid of them for good.Thanks to everyone who comments in the Guestbooks. I appreciate your insights, all the advice, and most of all the comfort I get from knowing that I am not the only person out there dealing with this chronic, frustrating problem. Stephanie
CommentStephanie-The VPF has 2 cookbooks out now. More food choices. I took Cataflam for awhile convinced that it would help. Its a prescription anti-inflammatory. If you ahve recurrent yeast infections then your husband should realy be treated as well. There has been discussion in my Yahoo group about it being passed back and forth. I wasnt that b ad when I first got VV either and then it got worse over a years timeIf you got this just after child birth then it may be a nerve related problem. You may want to look into that. pudendal.info has some information on this. However this is not EVERYONES problem. It just makes some sense that it my be worth checking into since you did get this after having your baby. Your muscles also may be weak too which can cause vulvar problems. Are there any VP specialists in your area? You may get worse, you may not. Only time can tell.There are a few ladies here who have had their urine tested. I havent because I didnt have the $350 at the time I wanted to have the test done and now I am in a new direction. My friend who had it done hasnt really been good following the diet and cal cit. so I cant say its helped or not. KimB had it done too and so far I dont know if its helped at all or not. she hasnt posted in awhile. ``````````````````````And for the record, I am not on herbals right now, only Spirulina and I guess you can call it an herbal if you want.Its blue green algae and has all the vitamins and minerals in it. I am on homeopathics and those are not herbs. After my QX testing came back and showed steroid toxicity and it had been over a year since that, I will not use all those harsh drugs again.
CommentI fear my marriage will end in divorce if I don't find a cure for this soon. It's too painful to make love. I have two small children who I'm afraid will grow up with out their father and mother together. I saw a psychic/herbalist who recommended three herbs that I will try as soon as I am done breastfeeding. (The last time and only time we made love in the past year and a half I got pregnant!) My husband wants to see that I'm at least exploring possible cures and the "1% chance" that I may not have vular dynia, even though I've told him from the Internet how much I've read of other women's stories and their endless misdiagnosis and treatments. Please help me.
CommentHeather-Not to be rude, but it doesnt sound like YOU are the one needing help. If sex is the most importnt part of your marriage and your husband would leave you over it then hes not that much of a husband OR a father.I get so angry when women post here in fear that they will lose their husbands. Do marriage vows mean nothing anymore? Dont they say in sickness and in health?But the secnd we get sick and they cant get any they leave?Thank GOD I have someone who is so undersanding and supportive. The stress of fearing he will leave you can make you worse. MAybe invite him to read posts with you. Take him to see your GYN with you too. Let your doctor explain to him what is wrong with you. Shame on men who are not understanding to our pain and our needs. Do they think WE like not being able to have sex? I miss sex just as much as your husband probably does, but it the roles were reversed and HE couldnt have sex would you leave HIM? I doubt it. Maybe give him THAT scenario. Ask him how he would feel if he was in pain and if you were making him research all the time and if you made HIM fear losing YOU. We should not have to be afraid of losing a man. And if they leave then they were never really in love with us in the first place adn who wants to be with a man tht we know doesnt really love us? If he would leave you over this then hes not the right husband, father or role model for your family.If he could walk out over sex then maybe your children are better off without him. That would just show your son that its ok to walk out on a woman if she gets sick, or hurt and it will show your daughter that women who have physical problems arent worth anything. YOU be the role model, and the nurturer. Sex is not love adn sex is not a marriage, its just a benefit.The sooner men start to realize that the better. What has to happen? Does every woman on earth need to come down with VV for men to realize we are more than just a vagina?What are the things you are planning to try? Dont do anything that may make you worse.
CommentTo Heather: Candi has given her thoughts and I would like to give mine. With most marriages ending in divorce we can assume that marriages in general mostly end in faiulure, not a happy fact but a fact. I am fifty and have always been very observant and I believe that most men live in the moment. I have never been unfaithful but I see the same things in myself and it stinks. Marriage vows are meaningless to those who do not have integrity, values and morals. It kills me to think of guys saying they love their wives in one breath and go and cheat in another but it happens constantly. So most guys are louses let's accept this as fact. Even if you did not have any problems with vulvodynia, were in great shape had every possible thing going for you in life there is still a high probibility that your marriage would end in divorce. Consider what is most important and work from there. In my opinion first and foremost you have to take care of your physical and emotional health. Stop worrying about your children not having their father at home, plenty of kids deal with divorce and grow up just fine. Stop worrying that your husband will cheat or leave you, Candi is right if sex is that important to him then he is not worth your love or tears. Tell him to leave and concentrate on taking care of yourself. We all tend to worry about the "what if" instead of living for the "what is". Please stop making yourself more sick with all this worrying, it will not change anything that is going to happen in your life. Look around you and see how many relationships with great sex fall apart. Yes to me and most men sex is important that is a fact that we need to face. This sex drive pushes us to have relationships and fall in love and it also pushes some of us to do the most hurtful things. Your husband will do what he will do you can't change that. Now are you ready to do what you must to take care of the most important person in your life? Look in the mirror, you did not ask for this and you do not deserve it. get strong, get happy that you can share your love with your children and folks who care about you. Best of luck.
CommentHeather- have you tried getting really drunk and then having sex? Someone suggested it in one of the old guests books. I tried it and it worked. Hubby, who is a great and understanding guy, was as happy as can be. But he's still a guy! Have you considered other ways to please him? Oral sex comes to mind. Good luck!
Commentheather beware of following the above advice because alcohol can definately make pain worse for some of us ladies. besides that it doesnt make the pain go away and who wants to get drunk everytime they want to have sex because that can lead to alcoholism. bad advice there.
CommentI'm sorry I even wrote a post to Heather after reading the insanity about getting drunk. Bad idea, especially when you have health concerns and children to care for. I've read other posts in the past that suggest anal sex but tha's not a good idea either. There is nothing wrong with being thoughtful of your lover but let's face it you have a problem and now is the time for him to be thoughful of you. I hope that whoever wrote the post suggesting getting drunk was either kidding or seeking help, it was very bad advice.
CommentTerrible adviseMost of us can't tolerate alcohol. It causes flares!! You start drinking so you can have sex when your man wants to and then you are drinking all the time and that leads to addiction blah blah blah not to mention, that don't most of us have worse pain AFTER sex? Well then you have THAT to look forward to when the effects from the alcohol wear off. Well, lets take another drink to numb THAT...get the picture?Plu the alcohol is causing more pain. BAD suggestion. Try some 5% COMPOUNDED lidocaine OINTMENT. Trust me on the COMPOUNDED. I used the ointment right from the tube and it was great t first, but then its harsh on the skin and YEOW! Use a base that you know you arent sensitive to. Maybe buy a bottle of GOOD Emu oil and take it to a compounding pharmacy and see if they wil use that as your base. You need a script for lidocaine and it needs to be written for compounded not regular. Beter to be numb than in pain :O)The 2.5% doesnt work worth a crap. I was using the 5% during a nasty flare and i was NUMB. It was a weird feeling, but it wasnt PAIN. :O)Its worth a try.
CommentMy daughter is 24 years of age with a 3 yearold son, for the past 3 years, off and on she gets the itching with continues with swelling and then the skin tears. The doctors don't seem to want to investigate her problem. There is not infection ,yeast, etc. She misses anywhere from 1 to 2 weeks of work each time it happens, even lost a job because of it. I would like to know, how we go about finding a doctor who knows something about this. HELP us please..Thanks
CommentTo Nancy: Start by telling us what state you live in? If no one here can point you to a doctor then there are other sites and organizations that can help. Regarding the itching, has any doctor prescribed an anti-itch ointment? Some of these can offer a little relief. Tell your daughter to stop using any soap, body wash, anything other than water to wash her sensitive areas. Read some of the past guestbooks and you will learn a lot regarding itching, burning, hidden yeast problems and some of the things women do to get temporary relief. Be patient, even the so called experts don't have all the answers.
CommentI think Frank B. and Candi should go into business together, or possibly start their own website!!
CommentCandi--How is that new treatment you have going for your, does it seem to be helping yet? Have you or anyone else ever tried Ox-absorb? I just ordered some b/c the calcium citrate doesn't seem to make a difference by itself. Its so hard to be patient and wait months to see if the low ox diet will work. I've been on it for almost 4 months and I am getting discouraged. I know it takes time but it seems like I might have noticed a something by now.
CommentTo Roz: You're right. There have been times over the last three years when I have written many posts or none at all. Seems that lately I've written more than my share and as a guy it looks really out of place. I sometimes need a wake up call so I'll back off for a while. Please take up my slack with the ladies who are new to the site. Don't let their posts go unanswered. Give them some of the good advice we have all read and shared. I could have posted as a woman and probably no one would have been the wiser buy I'm an honest person and a bit of a blabber mouth. Candi is very helpful but she has a life aside from posting here and I don't see many other ladies responding to the posts. I'm retired and although I'm trying to start a small business things haven't picked up yet so once or twice a day I check my stocks, read e-mails and go onto this site. Maybe one day I'll read some really great news here. Alright I'm done for now, bye. I hope you're happy, don't worry about me I'll be alright. Maybe I'll go feed some birds.....
CommentWell I dont know whether to take that as a compliment or not!If it was meant to be nasty then its pretty sad that people dont want advise from people who are making themselves well or have made themselves well. Wendy has been well for years and yet there were people being so nasty to her here that she stopped posting. Which is a shame because there will be those in the future reading here that will want her advise and it seems like when someone wants her info I am the one that is asked yet here am I feeling better than I hve in a long time and now I'm the one who is getting nasty posts directed at me. I think that alot of women here arent really as interrested in getting well as they act like they are. I think some people just like the attention they get from being sick or in pain and if they get well then they wont get that attention anymore. So when someone comes along who is well and has advise they get upset because then that shows there really is hope.Those who have spoken to Wendy are feeling better, myself included, but I guess noone wants to hear positive stories because then they may just have to get of their asses and do somehtng for themselves. Scuse the languageI think I'll take Wendys lead and not post here anymore because it doesnt seem like there is anyone here who wants to get well, just complain about their pain for the rest of their lives. I however am feeling much better and am glad for that. And yes Frank, I do have a life aside from here. Ya'll wanna stay in pain then so be it. But I dont and Ill do what it takes to get well. So sad that those of us getting well and who ARE well already, wont be around to help out someone else, but who wants to deal with smartass comments all the time just because someone doesnt believe that taking somehitng other than a pill filled with chemicals or a shot of steroids or this or that, can help. Certainly not me. I had sex last week a few times for the first time in ages, so looks like I'm doing somehitng right, too bad a couple of nasty women on here have managed to tick off the ones who are well adn getting well so we wont be able to help others.You all want to sit here and cry and complain forever instead of taking some advise from those who dnt then so be it.Enjoy your sad little lives.Those of you who ARE interrested in getting well adn what I am doing or what Wendy did, then you can find my e-mail address in the last guestbookFor the rest of you, stop your whining and crying. If you dont care enough about yourselves to actually DO somehting about your pain that actually may take a little more work than popping a pill every morning, then quit crying about it. It doesnt work that way.~~~~~~~~KIMBI have a bottle of Ox-Absorb, but I rarely use itThe info I had from Sci-Con said to give it at least 4 months and if you havent seen an improvement then to contact them. they have about 3 different things you can try.Maybe add the Ox-Ab for a month and see if it helps.Then call them, I would do that if you havent felt even a bit of relief by now. They were vague in the info as to the other things they trry.So sorry that its not working for you. I know you have been thru alot and killing yourself to get well and I hope you succeed.Ive read your posts for the last year and a half and you have taken and tried os many things. If you ever need anyhting write me personally. I'm following Wendys lead and leaving here. Funny how its those who never post that have smartass comments to make. Those who never contribute a thing here.FRANK_ I thought you were a little weird at first, LOL. But you're a great man and your wife is lucky and so are your daughters. I hope your girls never have to go thru this. Men need to be educated on our condition too and maybe then they wont run out and leave their wives like so many do.KIMB-I would be curious as to your results on the QXCI machine. If you ever feel the need to have it done let me know your results. Its really not expensive and its really interresting. I am glad I did it and blessed I found out about it.the girl who had it done and posted about it on another site is feeling better too. We arnt well, but getting there. It takes time. They say 2 months for every year you have had this. GOOD LUCK!Peace out!
CommentI had a vestibulectomy nine weeks and can?t believe life can be so great ? pain free. I suffer varying degrees for over 15 years. Only being diagnosed a year ago. In the last years I have tried all the standard treatments to avail. Even if it seems drastic don?t write off the surgery but make sure your physician is qualified and experienced. I absolutely love my Doc he has given me (and my family) a life back.
CommentI, too, had a vestibulectomy and was cured, but when I posted that info a few guestbooks back, no one wanted to hear it. They all said I made a mistake and the pain would come back. It was my dream to come back to this guestbook and tell you all what worked for me, but everyone was so invested in hating western medicine that they didn't want to believe me. When I saw this last post, I thought I'd try again.
CommentNoone wants to hear what works, havent you figured that out by now? Nothing but negativity here
Commentcandi, i don't know what you reacted to? i didn't see any nasty posts directed to you (apart from roberta's). the person that said you and frank should go into business together was commenting on your kindness and pro-activity as far as i can see. the majority of people on this site are positive and respectful - why let the comments of 1% of contributors get to you so much? who gives a toss what they say? and why fight nastiness with more nastiness anyway? you've contributed an ENORMOUS amount to this site and i for one, would hate to see you go. don't let people get to you so much candi. :)
CommentI wanted to respond to some recent comments regarding management and oversight of the guestbooks. I do try and review the guestbooks for inappropriate postings and delete them but I confess I am less diligent at this than I should be. I would like to request from all those who post on the vulvodynia.com guestbook please notify me directly by email at DrGlazer@att.net of anyinappropriate postings which include postings unrelated to vulvodynia or those overtly promoting or soliciting purchase of products and/or services in an inappropriate manner. Please indicate the guestbook number and date of the posting with any other identifying information so I can quickly locate it and take appropriate action. I would very much appreciate your volunteer efforts in this respect to assist me in managing the guestbooks and keeping them free of inappropriate postings. Thanks to all of you for your continued interest in the www.vulvodynia.com website. Howard I. Glazer Ph.D.
CommentHello, I'm new to this site and new to this syndrome. I've had symptons for about 8 months and got a diagnosis this past Feb. I'm feeling better already on HRT and calcium citrate and have been off tea spinach and a few high oxalate things. I'm postmeno so my situation is different from all you young women. I was wondering if anyone had used chiropractic as a treatment. Shortly before I got this I was visiting a chiro and he informed me that my spine was crooked. I've read that curviture of the spine could contribute. I feel stiff and sore alot and since having this can tell I'm tensing muscles (a life long habit I think) He wanted to put me on vitamins, minerals, massages and repeated visits at that time but I had no money and no insurance. I'm thinking if I had gone with his advice I maybe would not have even developed this condition. Who knows. I have a little nephew who had a very serious condition with his bowels or intestines , not really sure what it was but his mother told me his symptoms were greatly improved by going to the chiropracter. I used to hate the way they always insisted on you coming back again and again but I'm starting to be a believer in their theory that the spine must be decompressed so the nerves can work correctly and it makes sense to me that this could be one of the contributing factors in this mysterious malady. I lean more to the natural remedies and I'm even uncomfortable with the synthetic hrt . I plan to look into bioidentical compounded hormones but know they will be very expensive and money is really an issue as I am single and uninsured and at present unemployed. My life was turned upside down by this whole mess because I didn't have a clue what was going on and neither did the several drs I saw before my diagnosis. Sorry to ramble but I feel very alone and lonely at this point. I guess the point of this whole letter is ...has anyone used chiropractic manipulations for their vsyndroms and has it helped anyone. Hope everyone is having at least a bearable day. Good luck and good health to all you ladies.
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CommentCandi and Frank, please dont leave the guestbook; Frank- i feel we are very lucky there is a man posting on here and i only wish ther were more men posting, its important to hear how it affects u, the partner of a suffer, and it gives me some sort of insight into what is going through my partners head too. Candi - U have been an inspiration to me and i have great interest in reading your posts and how ur getting on, you have provided so much information and everyday i now look for new things to try and ways to get myself better, i was very negative when i first came to this site, but now with thanks to your help and reading other people posts too im fighting everyday to get better. I'm touched that you replied to my first post at the time i was very down and upset and i continue to read your posts past and present to get advice and to just read your experiences. Take care both of you, i always look forward to reading your posts and i hope to hear more of your experiences and advice. You are both very special people and we are all very lucky to have come accross you both.
CommentTo Jenny: Thank you for the kind words. I will keep reading and if there is something more directed towards a man I will respond . I've read so much here and experienced so much through my wife that I sometimes forget that I'm a guy giving advice to a woman and it does look inappropriate. Now if I was a doctor it would be a different story. Candi has been great but there should be other women willing to advise those in need, especially those who are new here.Like I said I'll keep reading but I'll butt out from giving all that info. Thanks again and I'm really happy if anything I said made sense or helped give insite to a guy's thoughts. My best to you. Frank
CommentA vestibulectomy is not the end of the world! It was the beginning of a new one for me. I am only sorry that it took so long for someone to diagnosis and treat. I suffered way to long. I now need to address all the side effects from the years of non-effective treatments (ie. weight gain from inactivity, loss of confidence, relationship rebuilding. etc.)
CommentTo C R where did you have your surgery at? How do they do it? Do you still look the same down there or not and does scar tissue hurt you at all?
CommentRETA - i say give the Chiropractor a try. there are lots of theories that would support a problem with the spine and this condition - the nerves that the run from the spine can and do affect our vulvas. i've spoken to women who think vulvodynia is a complex nerve, muscle and joint imbalance that can manifest itself in lots of different ways.
CommentI've been suffering from vestibulitis for nearly 3 years. I know exactly what caused it: 1st degree vaginal tear. All it took was one moment during sex when I was dry and so began my 4-year nightmare. The tear always reopens and bleeds, despite dozens of creams, alternative medicines, and 2 suturings. Doctors are baffled. I now have vulvar vestibulitis syndrome as a result of the constant trauma (tear re-opening, biopsies, etc.). It became full-blown vestibulitis when I used prescription steriod creams. I got married while 2 years into my suffering and we have never made love as a married couple. To this date our marriage remains unconsummated. I constantly wonder if I need to, like, hire him somebody. We have lots of friends and they all brag about their carefree sex lives. I'm so mad. I hate watching TV or going to the movies because there's always sex in it. Well, I've sought treatment from dozens of doctors to no avail. I can't believe they just shrug their shoulders and tell me they can't do anything. Our pastor at our church has told us that we don't have a real marriage because it's never been consummated. Like that makes me feel good. My pastor even encouraged us to get an annullment (CA law deems marriages voidable due to "physical incapacity"; in other words, unable to have sexual relations). My husband and I have looked into annulling our marriage but it's just so depressing for both of us. We still love each other and we have very high sex drives which makes this all the more frustrating. I feel like I married my brother. I mean we are completely platonic and I'm so depressed about that. Well thanks for listening to my rant. I pray for a cure.
CommentTo the person interested - The Doctor who performed by vestibulectomy is in Houston Texas. Please email me if you directly and I can give more details
CommentTo SANDRA... Please don't get discouraged. I too am in a new marriage and we've only been lucky enough to consumate. Being newleyweds should be great and carefree! Life is not perfect in every way. What matters is that your husband married you for love, and not sex. I think that is truly amazing these days. You and I are both lucky to have such understanding husbands. I know how frustrating it can be at times (all the time!) and how depressing it can be... please try and keep your chin up and be thankful for the wonderful caring man in your life. Why can't all men be like that? Ah.....and then there is FRANK B.! Frank B, I think i can speak for every woman on this site when i say, 'we love you!' and all your support and comments as well as Candi's. And Candi, yes, there is a TON of negativity on this site, but it's only because of the pain and agony most of us are in. I only wish i could say that we all feel as good as you do. But most of us don't. Slowly and surely, though, through your advice and your suggestions and comments, there are some of us out here who are starting to feel some relief from this! All thanks to you, Frank and Wendy. I'm the one who wrote that you and Frank should go into business together. And i wasn't kidding, nor was that a personal bash at you. I'm serious! You should start your own website or something. It seems as though you know alot more about this condition than most of our doctors do! I too have been taking supplements, herbs, and vitamins... i've been feeling great for about a week, and then i got a bladder infection. So i'm back to square one again. But i have a vestibulectomy scheduled for monday April 19th, that i think i'm going to cancel. the doctor will be returning my call tomorrow so i can tell him how the herbs, supplements and vitamins have been working. I'll let him make the decision if he thinks i should cancel or not. i'm just afraid the scars will hurt later.Anyways, Frank and Candi, you both have been a huge help to most on this site and Candi, please don't let the rudeness of those suffering bring you down. Keep in touch!
CommentTo Rozlynn: It was so nice of you to explain your post, thank you. I know I can sometimes be a bit much so while I did not take offense I did think it was a message to cool it. My wife has started reading the site again and said she is going to see the expert here in Ct again, dr. horowitz. Even though we are lucky enough to still be intimate it causes problems. Even if she doesn't get the tearing she has pain from other things. She gets raw and has bad itching with no know reason, and it really gets to her. Last night I was reading the site and read the post by Sandra, I asked my wife to read it and she e-mailed Sandra. She wanted me to read what she wrote but I said just go ahead and speak from your heart. If there is one good thing in this illness it's the fact that you can give emotional comfort and support even if you can't change anything else. I stopped bugging my wife to see other doctors or try other treatments long ago, it was just annoying her. But now she seems ready to investigate further. Aside from the obvious loss of sexual intimacy, pleasure and closeness I'm most disturbed that we can't get an answer. Why do some women develop these symptoms when they haven't even been sexually active? Why was my wife for example fine for so many years and the all of a sudden start to develop this recurrent tear? What is the mystery that prevents all these doctors from looking at either the discharge or skin biopsy samples under a microscope and saying this is what is going on and here is how we resolve it. Always in the back of my mind are my daughters and their future. My wife and I have had many great years without vulvodynia, I don't want my girls to suffer. No woman should have to suffer from all these painful and limiting symptoms, not in these times we live in. Well thanks again for the suppost and kind words, with my wife Rosina's permission I will post anything of interest that happens with her appointment. Maybe she will post herself.
CommentROZ Thanks for that, I took what you said the wrong way. After that other post and some others that were negative and directed at me I figured may as well help only people who want to listen.You said >I only wish i could say that we all feel as good as you do< Funny thing is, most of you actually feel BETTER than i do! But you cant see that because I dont let it get me that down. I have my times. I just get so happy when I feel good enough to have intercourse, even if it is painful, its still a big deal for me. I had intercourse for the FIRST time 2 weeks ago since June of LAST YEAR!I dont hurt just upon touch, i burn all the time. I was about 80% better last april and then in June of last year I got really bad. But I can say that from what I have been doing the past 2 weeks, I feel better than I have in a long time, but nowhere as good as last April. for me to feel even a bit better is a HUGE deal. I know what I am doing is working. I have weird symptoms that noone else seems to have, like peeling sometimes. Ive even been told by other sufferers that I am basically different because of that. But I dont let it get to me.Two weeks is not long enough to make myself well, but I know I am gettig there even if I do still hurt.I hear on here women that can have intercourse weekly and wear pants talk about how they feel so awful, I cant do either on a weekly basis. But when I can and after the huge year long flare I had it gives me hope. There is always someone somewhere that is worse off than you. I tell myself that everyday. I HATE hearing girls talk about how they are having surgery because they cant have intercourse every night. That just makes me so sad. But I guess its easier to try to cut out the pain than make yourself well. Sadly, sometimes they get worse than before. Surgery is a huge gamble. I know that natural things are so much better and I have done all of the other things, not surgery, but everything else, and I am feeling better than I was the past many months.Shoot, my goal is right now to get the way most of you all are, able to have intercourse even once a month. And I DID twice in one week, and then I ate a ton of sugar. Today I am not so red, but the skin still hurts at times.Thats better than yesterday and yesterday was better than the day before. But I know I am getting better. Surgery is not an option. I know it helps some and thats great, but there is a cause behind our pain and surgery wont take that away. I want to heal, not cut out the pain. Because whatever is causing the pain can move to another area after time, and it may be an area that wont be able to be cut out. I know I'm getting better, I can feel it and I can see it. I have a friend who cant have intercourse every night, but she can do it and wear jeans everyday too, I cant do that. Most of you have pain on touch, I have it constantly. Im not where I was last year, but I'm getting there. Naturally. And I dont regret my decision to change my lifestyle. Not only will it help my poor vulva, it will help the rest of my body too and that makes me feel so good! And no thanks on my own website, I have all I can manage with my e-mails everyday and my son and trying to work at home and babysit my little niece daily. No wonder my stress level is high :O)And then I come here and post some success and I get bashed for it becasue I choose to do my thing naturally. I am taking some time away from this site. I need to for myself. My e-mail addy is here but I have to get my mind more focused on other things and I think that will help too. Constantly thinking about the pain also makes the pain worse too ya'll!Garden of Life has a product called FYI (for your inflammation) I am going to be trying it here real soon. Somehtng just keeps leading me back to Jordan Rubins book that I didnt even want to read when it was given to me, I put it in a drawer. But there are things tht kept jumping out at me reminding me I had it. Theres a reason for everything.I feel I got this so that I could make myself well adn then help others. Its just that noone wants to listen unless you are completely well and then there are those who STILL wont listen, like the ones who bashed Wendy. Shes well, we arent, what is there NOT to listen to?a
CommentWhen it comes to V V, all I ever look at on the web now is this guestbook site. All the web sites I have looked at in the past haven't changed in years. Are there any new ones out there worth looking at? Also, it seems to take so long for the low-oxalate diet to start to help. But then I read on here about women who eat one piece of chocolate and can feel the effects an hour later. Can anyone explain how that is? Candi, please stay on. I always look for your inputs. I may not always agree with them, but they have my attention! I feel the same as you. Always in pain. Seldom having sex. Can't wear tight pants. Does this ever just fade away over time? I need hope.
CommentSANDRA--I can't believe your pastor told you that you dont have a real marriage. Doesnt "in SICKNESS and in health" mean anything to him. Sex does not make a marriage, even though we all know it is important. I don't think he would tell someone that had cancer and was too weak or sick, etc to have sex w/their spouse that they didn't have a real marriage because of it. We all feel a loss b/c of this but if your husband is standing by you and supporting you he is a truely good person and spouse. What about all the married people who can have sex and there relationships are horrible with each other-cheating, abuse, etc. Those kind of people do not have a real marriage, you and your husband do. I have not really consumated my marriage either. I have been married 3 1/2 years and have attempted intercourse about 3 times, I don't really count it if there is penetration for less than 5 minutes and no pleasure for me b/c of the pain. There was one time a few months ago that my husband and I had sex for about 10 minutes. I don't dwell on the fact that we havn't really consumated our marriage, I keep trying to look into the future and think about when I do get better we will never ever take sex for granted, like so many people do.
CommentJeanne- It CAN go away. I know it can and I have faith that it does because I have woken up about 4 times in the past year and a half with no pain or redness whatsoever and it stayed gone each time for 24 hours then came right back.Its just finding out what is causing itToday is a GREAT day for me.Barely red and tho sensitive and some burning, its still better than other days.I have increased my fungal detox. The directions say 10 drops 3 times a day or 5 drops every 30 minutes for chronic problems, so I am doing 5 drops every hour or a few days. My QX results showed that the fungus was a huge problem. I remember sitting here crying my eyes out from the pain in the beginning and it wasnt even that bad now that I look back. It was at the time, but then it got much worse and now I sy, well if I could get back to even how I was in the beginning I'd be happy LOLSee, theres always somehitng worse :O)I just try to be positive and when I cant, I tell myself that there is someone out there with somehting worse than us. Some woman may have vulvar cancer and it may have spread and not only does she not have intercourse with her husband, she will probably pass on and leave him and her kids of she has some. Theres always somehtng worse.Tai chi has helped relieve me of my stress too and its not hard ot do and I can even do it at home in a skirt of I hurt too bad to wear track pants and noone will care because they cant see me and the moves are soooo easy. I find walking more painful than them! :O)I'd be happy if I could feel everyday like I do right now even. I'd rather be 100% or even 80%. but After some of the worst pain I have felt recently, this is not so bad at all.I still think that the nerves are involved. Not the pudendal nerve for ME personally, but I think that after so much inflammation of the vulva for so long that the nerves become inflammed too adn I am trying to find somehting natural to help relieve them. I am going ot try this stuff, yep, its herbal :O)http://www.beyondprobiotics.net/fyi.htmI used a prescription anti-inflammatory and it didnt workI cant remember the name. Oh, it was Cataflam
CommentHi: To those who have had vestibulectomy, can you tell us what kind of vulvar problem you had? Contact pain only or pain all the time.I had a vestibulectomy in September and--as far as cosmetic concerns--I look exactly the same down there. I'm about to have an additional excision because my doc didn't cut enough and I still have pain. But I'm encouraged. The area he cut is now pain-free.Good luck to all!Lia
CommentMy vestibulectomy was for vulvar vestibulitis (pain on contact). I was a primary. I did not have the glands removed, just the vestibular skin distal to the hymenal ring. It was the best decision I've ever made.
CommentMy vestibulectomy was for constant pain and on contact. I also did not have the glands removed. I had learned to live with so much pain that I couldn?t even sleep thru the night. Since surgery I have been pain free.I was curious as to what a primary is?
CommentThanks to the women who responded about their surgeries. "Primary vestibulitis" refers to pain whose onset coincides with first intercourse or first tampon use. Secondary refers to people (like me) who used tampons and had intercourse without pain for some time before vulvar trouble hit. I was 32.My pain is constant. Some docs say surgery only works for contact-only pain. My doc said that isn't necessarily true; it depends on where your pain is.I'm encouraged to hear a positive surgery outcome from a pain-all-the-time girl like me! My pain is limited to a very small area, but even sitting sets it off.Thanks for sharing your info with us!Lia
CommentLia, I have secondary also. But my pain goes from the harts line all the way down, but the outer edges of the labia arent bothered. Its funny to see, I have this big red oval on my vulva LOLMy pain started a few months before my 30th b-day. Seems like so many with secondary who I have talked to started around the same age. Think I'll have ot have hormones checked soon, just in case theres somehitng going on there. I am feeling so much better tho doing my detoxes. Today is anotehr good day so far. But the day just started :O)How did your VV come on?I went to bed perfectly normal and woke up swollen and red and SWORE I had a yeast infection without the itching and discharge. My irritation began just belie the clitoris at the 12 o clock position. It felt like a cut there and that was the night I went to sleep somewhat normal. Woke up in pain. The day before that there was not even pain at the 12 pos.
CommentHello everyone. Thanks for being here. All my life I had Yeast Infections and at times urinary tract infections. I realized that I needed to make a change in the products I used, such as laundry detergents, etc. Just when I thought the problem was solved...and I started the change of life.....I started to have extremely painful sex...burning...like it's on fire!!My partner and I have always enjoyed a good sexual relationship, now I don't want him to come near me! I don't know what will happen between us. My doctor has just diagnosed my problem and I'm on Cipro and Elavil 10 mg. I will post again in 1 month to let you know how things are going.God Bless and lets pray for a cure!
CommentI am pleased to have found this site. I am from England and I suffer with this (it drives me nuts). I have MS and doctors think it is related to my MS. I have had recurrent yeast infections but no other vaginal infection. I have interstitial cystitis and irritable bowel. I am currently taking Amitryplitine 100mg per night and 2400mg of Gabapentin it seems to take the edge off it but I find it gets worse when I have my menstrual cycle.
CommentOK Ladies I need your help on this one. I just went and picked up an insanely expensive medication called Aldara. Its normally prescribed for genital warts. I need to know if anyone has had any bit of sucess with this medication before i put it on my body. I know I haven't read much about this being used to treat our disorder.... I just wanted to know if anyone else's doctor might be on the same drugs as mine (That comment is not literal). Has anyone used this???PS. This medication seems to eat away at the nerves.... when last month they perscribed Estrace... which is a cell strengthener. HELP!!!!!!
CommentHello all. I have cancelled my vestibulectomy surgery scheduled for monday the 19th. Since i've been following Candi's advice with the herbs, i have been feeling better, almost 80% for about three weeks now. Sex with my husband is tolerable...at least. Sometimes there is pain, and other times, there is no pain. (since i've been taking the herbs and supplements) i think it may have something to do with the bacterial vaginosis infections i keep fighting. maybe once i get rid of that, my vestibule glands will finally stop swelling, causing that painful burning sensation! I just got off the phone with my doctor. I told him about this website and all the helpful hints here. I also told him to suggest it to any of his other patients who are in need of support and help! He suggested that indeed we do cancel the surgery for monday. He also says that particular type of surgery is a 'last resort' type of thing, and that if i am feeling any better, i should cancel or at least postpone the surgery....which i did!!! (thanks to Candi's herbal suggestions) So you see ladies, in some cases, there is hope. Don't fall off the bridge just yet... hang in there and try not to think about the pain. it only makes it worse, for me, at least. If anyone is interested in knowing the herbs and supplements i've been taking, please email me at the address above.
CommentA vestibulectomy is a last resort but I feel that many Doctors wait to long, leaving the patient in pain. I took me over 15 years to be diagnoised! So by the time I found the right physician - All seconday infections had been treated and retreated when they didn't exist. The surgery should only be done if other medical/herbal methods have not worked. Good Luck
CommentSue-Remember Cipro is an antibiotic so you will want to treat for yeast too! I HATE antibiotics! They always start an awful cycle
CommentMichelle-Before using this all over your vulva, test it on a TINY area first and make sure to rub it in all the way so that it doesnt get all over another area. There was a lady who posted on my Yahoo group recently and I wont post her name but I will post the positive area of her post. She doesnt regularly post since shes well now, but here is what she had to write about Aldara :O)```````````````````````````````````` My gyno excised the two wartswhich by the way showed mild dysplasia (sp?). I went back severalweeks later and she prescribed Aldara - an anti-viral given forHPV.This is when my story starts to look up. It has been two yearssince being diasnosed with HPV. Since the warts were removed andespecially since starting the Aldara, my pain has diminishedsignificantly. The first year, while MUCH improved was sort oftouch and go. I would have good weeks and bad weeks though notnearly as bad as before. This past year I have been, I wouldestimate, 90-95% pain free. While my doctor says I dont' have tokeep using the Aldara I do continue to use it once per week forpeace of mind. I get colposcopies every year of my vulva. My papshave always been normal.`````````````````````````````````Hope this helps
CommentRoz-Maybe you can post here for all who may want to stay anonymous to others, what you take daily, what brand, how many, what time of day. If you are cleansing/Detoxing right now, wait until you are finished and tae an immune inhancer like RM-10 by Garden of Life, I am sure that there are many other brands out there that are less expensive. I say wait until AFTER, because my QX lady told me that the bacteria/fungi/parasites (mainly the parasites) can benefit from it. I never knew that!I feel really great still today too :O)Not 80%, but so much better. I have a problem falling off the wagon sometimes and loving the Reeses PB cups and Butterfinger bars. I have been craving sweets insanely this week! I am wondering if its because of the Fungal Detox. Maybe the little bad guys want to stay alive, and that is causing the cravings. When you have a fungal prolem you crave sweets so it makes sense. Maybe I'll write my lady tonight and ask if she knows.
CommentCANDI- good advice...for those who wish to stay anonymous. here is a list of what i take and also a list of my symptoms. bear with me...first off, i have vulvar vestibulitis. the 'vestibule' glands at the opening of my vagina are constantly swollen, causing a burning sensation ALL the time. I have chronic yeast infections, bladder infections, and bacterial vaginosos infections. Obviously there is a problem here. and i also have been treated for these problems when there was no infection until alas....i was diagnosed with VV. So, here is what i take and for what reason. and for the last two to three weeks, i've been feeling 80% and sex is possible. :-)CRANBERRY, herbal supplement. once daily. supposed to maintain healthy urinary tract. dirty and bacteria filled urine can and does irritate my little glands! (just bought this one today...bladder infection!) 500 mg.ULTRA ACIDOPHILUS, dietary supplement. once daily. supposed to bring good bacteria to your vagina to fight off the bad bacteria. 350 mg.IRON, dietary supplement. once daily. to try and control my low blood sugar. CHROMIUM PICOLINATE, dietary supplement. once daily. to try and control my low blood sugar also. (which, i'm not sure if my sugar is outta whack or what, but from reading this site, lots of women believe that sugar is their main source for problems!!) 500 mg.DAILY VITAMIN. i don't think the brand or mg. would matter much.CALCIUM CITRATE, once daily at night. not sure of the mg. this is to control the oxolate build-up in the urine.)GRAPEFRUIT SEED, botanical extract, once daily, this is an anti-fungal, anti-bacterial, anti almost everything! hopefully it will help control the yeast and bacterial vaginosos. this is from WENDY's suggestion.all of these items i take at lunchtime. it's easy for me to remember while here at work. the calcium citrate i take at bedtime. all the items on my list i have learned from this website and through research of my own. CANDI, i'd like to try your fungal detox thing. i think i need it. hope this helps for anyone interested.
CommentHi Ladies,I have posted a few times on this site (last guestbook, i think) and I have been making excellent progress towards being 100% pain-free so wanted to share my story as it might help someone else. Per my old postings, I really thought all my problems were based on hormonal imbalances...too little estrogen to be exact. I had vuvlar swelling and severe sensitivity all the time making daily life a living hell and sex unthinkable. I had very light periods and a continual bacterial infection I cound't get rid of. I also have hypothyroidism. I am only 26 and had this for 3 years. I NEVER had burning. My recent doc, whi has turned into a life saver, did multitudes of tests on me and figured out that I was low on estrogen. I have now been on estrogen (a compounded bioidentical skin creme formula that I use .5 mg 2X a day topically) for 6 months and am about 80% better. The bacterial infections (my doc thinks) are also due to low estrogen as this makes you more prone to infections. He gave me natural antibacterial suppositories, and again, I had a huge relief. We recently put me on progesterone, as i am also low on that. Another thing that really helped was Egyptian Magic, a olive oil/bees wax "creme" that my doc told me to put on the vulvar tissue after urinating. i NEVER could tolerate anything on that area until this and i also noticed within 2 weeks a difference. i tried the low ox diet, didn't work for me. The best was just to eat a "low sugar" diet. I continue to make progeress monthly. I dont have any swelling anymore. The only symptoms are some sensitivity (which i think will calm down as the tissue heals completely) and some redness in the vulva area. Now, I can actually insert a finger into my vagina without any pain! How pathetic is that that that is big news! :) But it just shows me I am on my way to getting 100% better. Hope some of these tips might help someone! I know that hormones is not the answer for everyone, but it may be for some. Unbalanced hormones (especially low estrogen) cause a cascade of problems (such as chronica vaginal infections) that you might not realize are related to the hormone imbalance. I truly believe that there is an answer out there for all of us. It took me 3 years, but I didnt give up and let doctors label me as "uncurabe" and I found my answer! Julie
CommentROZ-Did you know that chronic candida can cause you to be low in Iron? Su told me that when we spoke over the phone.Also the fungal detox I am doing is homeopathic. Its by a company called Dr. Recommends and it's called Fungi-Fuge.I think after it I may do the one by Garden of Life too just to be completely certain its gone before I go for my next QXCI therapy. LOL JULIE- Only we could be happy that you can get a finger in your vagina LOLI never in life imagined I'd be happy about somehitng like that. I never gave my vulva or vagina a second thought except when I was menstruating and was cursing that I even HAD a vagina at the moment LOLThats such GREAT news. I am going to have my hormones checked soon, just in case. Its the ONLY thing that hasnt been checked for so far!I have been off my BC for 4 months now, or maybe 5, I dont remember so it will be all my natural hormones.That sensitivity is so annoying isnt it?I can be perfectly fine here and there as far as redness and swelling and burning, yet my skin will be sensitive. ITs hard ot explain that feeling, because its not burning, but if anyhting touches it its annoying as heck!Good luck, looks like you are on your way! :O)
CommentTo Candi: When my wife had her hormone levels checked the endocrinologist took blood and also swabbed her vagina. He said that way they could not only check for estrogen levels in the blood but also at the cell level of the vagina. I asked if saliva hormone tests were accurate and he said no. When we went back he said everything was normal. He also said that if she was getting a somewhat normal period that was an indication everything was normal. I didn't push to have a second round of tests by another doctor but I just didn't believe the guy. He was about a hundred years old and was more concerned what the estrace was doing to me than what was happening to my wife. I think they tested for estrogen, progesterone(spelling) and testosterone. I know when all this began and even now stress is a factor. I remember reading somewhere that stress can deplete the endocrine glands which make our hormones, don't know if that's true but if it is then women with vulvodynia are more stressed and more succeptable to this happening. Any thoughts?
CommentI have to INSIST on having my levels checked because I keep getting turned down and told that I am too young (31) and I get regular periods and my vagina looks perfectly healthy so my hormones HAVE to be fine. I dont believe all that. From all the reading I have done the past week, a weakened immune system can cause hormone imbalance as well. All this was to do with fungus and parasites causing digestive problems and a weakened immune system. This cycle causes a TON of problems.I'm so impatient, detoxing takes WAY too long!LOL
CommentAngela-So I have a flashlight that has these little colored things you can use to change it. They slip over the tip of the flashlight. One of the colors is red. SO if I wanted to see if red light worked before buying this other product could I find out using that first? On the outside only of course. Did you have vaginal pain? I dont so I wouldnt even need to use that IGEA thing inside would I? SOunds interesting and as everyone knows, I believe in the weird :O) LOL
CommentThis site is the most encouraging thing I've found. After I got married/began sexual activity, I found out I had this problem, and in retrospect realized I've had it since i was at least 16. After being told by my OB/GYN to seek marriage counseling to resolved unrecognized bitterness i MUST be feeling against my husband, and seeing many doctors who could not diagnoze me, I found University of Michigan doctors who diagnosed me with vestibulodinia without a known cause. In the past year, I have been treated with anitdepressents to control pain, and with 4 month cycles of Diflucan for yeast infestions. (For some reason, that seemed to help, even though I did not have a yeast infection according to test results.) But already, this treatment is fading in its effectiveness. I am moving to VA and trying to find a source for treatment there.
CommentJulie,What is bioidentical cream? Is that the stuff Suzanne Somers talks about? If it is, she swears by it. What is involved in making it?
CommentRenee-After having this for over a year and reading everything I can, I have com eto learn that you can have problems with yeast even if it doesnt show in your cultures. My GYN FINALLY admitted this. Diflucan seemed to help some at first for me too, but those little buggers can become immune.. I had some success wiht 14 days of Nizoral too and I was supposed to go have my liver checked an ddo another 14 days but decided to go homeopathic and detox. Fungi are hard to get rid of. They become resistant to drugs so easily. My GYN wanted me to try Lamisil, but I have no insurance and it was $300 for 30 tabs and I certainly can't afford that!So if VV is from bitterness, then I guess we all must be bitter ol hags LOLThats just silly.:O)
CommentCould anyone recommend a specialist(s) in vulvar disorders in either Iowa City or in the Chicago area? If you know of someone, I would be grateful if you could email me any information you might have. I'd like to get the opinion of someone who has more expertise in this that a regular gyn--mine just seems to go along with whatever I suggest.Also, thanks to Candi for the advice you gave me when I first wrote.Frank, I REALLY hope you keep contributing. I think having a man's perspective on this is so valuable.
CommentCould anyone recommend a specialist(s) in vulvar disorders in either Iowa City or in the Chicago area? If you know of someone, I would be grateful if you could email me any information you might have. I'd like to get the opinion of someone who has more expertise in this that a regular gyn--mine just seems to go along with whatever I suggest.Also, thanks to Candi for the advice you gave me when I first wrote.Frank, I REALLY hope you keep contributing. I think having a man's perspective on this is so valuable.
CommentKaren-yes, its the stuff susanne somers was talking about. i don;t know how they make it. my suggestion would be to find a doctor that believes in bioidentical hormonal replacement and they will be able to help you. mine is a compounded creme i get through my doctor. hope this helps! one last comment, unfortunatley blood tests are not the end all of knowing if hormones can be part of your problem. every woman will have her own level that is right, and even if you levels fall within the "normal acceptable" scale the lab considers adequate, for you personally, you might still be too low. annoying, isn't it!? for example, i am a very tall girl so weigh more than average, so i need more than someone who weighs less. julie
CommentHey gals, your stories were great news!!! I've had this since 2000 and I definitely see a lot more "success stories" on different sites now. Rozlynn - are you also on the low oxalate diet as well? You didn't say.Thanks again for sharing your stories!!!!!
CommentAnyone looking for a doctor, please call the Vulvar Pain Foundation. They have a list of doctors in most areas :O)
CommentHave a question. I think I read someone else post this here before but it my have been somewhere else.I noticed some chunky type discharge today, but its not like yeast infection type discharge. It is actually the skin peeling from the walls of the vulva. I am close to my period I do believe. I lost track of it when I went off the pill. This has happened before. I cant really seem to find anything on it when I search. Does anyone else ever get this or know what causes this?I dont have redness or pain or anything vaginally. Its not hurting or anything. I kow my GYN said that our discahrges are made up of dead skin cells, but I can actually see the skin peeling in there when I look and it comes out looking chunky.Sounds gross huh LOL
CommentCORRECTIONI said it was skin peeling from the walls of the vulva and it should have said VAGINA! Nothings peeling outside, just inside and coming out.
CommentTo Candi: My wife has been reading some posts lately and is planning to be more active in research and treatment. I think she is going to look into the kenalog shots to repair the skin tearing. She is pretty busy with the kids and working so I wanted to respond to your last post. She does occassionally have discharge that looks like dead skin, not yeast. It's almost like peeled skin after a sunburn that you kind of roll around with your fingers. That's what it looks like. She also occassionally gets a discharge that's like a long thin string. That one however does sometimes preceed an infection. Maybe the skin discharge is the vagina cleaning itself. Make sense?
CommentJulie-I totally agree. Some women have been helped by the regular estrogen cream, women who are young and have no hormone deifiencies. The topical creme sometimes helps strengthen the skin.
CommentI don't want anyone to be mad at me, but I just want to make one suggestion....be wary of the Vulvar Pain Foundation. It should be called the oxalate foundation. I was getting iincreasing frustrated with the fact that the only thing they talked about was the diet. Then several months ago they published a newsletter badmouthing every single other treatment and why not to use them These were treatments that I have seen help numerous people on this website. I think that is really doing a disservice to people who could be help my other means. All I am saying in be wary. A good alternative is the National Vulvodynia association. They are very open minded to all treatments and have the top dermatologists, neurologists, OB Gyns, etc. on their board.
CommentFrank-Well I think its pretty normal then. The long stringy one is normal as well, because that kept coming up when I was looking for the other. BUT it depends on coloring and how much there is. Most women who still have periods get more of that just before mensus. I am so glad your wife is reconsidering some sort of treatment. Let her go at her own pace. She can e-mail me anytime privately if she wants because she didnt seem ready to post here from what you say. Thats understandable tho. I read here for months before posting. KAREN--I never got that newsletter. Maybe because I needed to renew my membership. they defiantely are pro oxalates and it is a huge problem for alot of women, but not the ONLY problem. But for those who DO have oxalates as a problem, they have to be very leary of certain things, like herbs that are high in oxalate content.But I dont think that you have to be a member to get the name of a doctor from them so I still suggest them for anyone looking, you DO have to be a member to get the name of one from the NVA. I suggested to a lady that she call the VPF for a doctor recommendation and she thought I meant the NVA and wrote me and said that they told her she had to have a membership to the NVA and I told her that i said it was the VPF and when she called they gave her the name of one.ITs time to renew my membership so maybe I'll look at the NVA and see what their ideas are, especially if they are openminded. I do agree that oxalates are trouble and the VPF has had alot of succes with their treatments. I wont ever knock them. They were founded by women like us. They put forth alot of effort and they are very helpful to many many women. I didnt go with the NVA because going to their website, they didnt offer much in the way of info there so I thought they werent very good. Maybe more people would become members if they had some better info on their site. Websites sell unfortunately. Either way someone goes tho, your money is being used for further research so its a personal choice.If you wouldnt mind, when you have time, would you post which treatments the VPF was arguing?Probably all the ones I am doing LOL
CommentKaren- you were right. This web site talks about the low oxalate diet almost as if it is the key to the cure whereas the National Vulvodynia Association barely mentions oxalates. I have often wondered why alcohol is such as big "no-no" in the oxalate diet, yet some wines are listed as being low in oxalates and Budweiser beer is a moderate. Does anyone know which wines are low? Thanks!
Commentwhat can i use or do to make my vigina tight
CommentCANDI-The newsletter was summer/fall 2002This is what it said:OUT OF OUR LEAGUE:(unrelated diagnosis)AntifungalsAntiviralsProlotherapyYeast DietRISKY BUSINESSAntibioticsAnticonvulsantsAntidepressantsClorpacinCortisone and SteroidsHerbal supplements of unknown oxalate contentSurgery(all kinds)BAD BETS AND LOSERSAlcohol injectionsAldactoneAnestheticsBartholin glands removalBladder and Urethral DilationsBladder removalCapsaicinHystercetomyInterferonLaser surgeryNerve blocksPodophyllin5-FUTrichloracetic acidAs you can see, I believe that is virtually every treatment used other than the diet. And treatments that numerous women on this website have had help from. I started being suspicious of the whole thing when I went on the diet 8 years ago and they said oatmeal is low oxalate and in the first cookbook almost every single recipe had oatmeal in it including desserts, meatloaf, and even suggesting putting it in coffee. And then they said "Oh sorry, we made a mistake, it's really high oxalate". But people were feeling better, so sometimes I think the oxalate diet is helping because woment have stopped using invasive treatments that were making them worse and that's why they felt better. But I do agree, we need to get any and all help we can from ALL resources.
CommentI DO have that newsletter. I think its the one that they send to all new members. I think I'll subscribe to the NVA and se what they have to offer
CommentI love this page. It looks really nice. Keep it up.
CommentGIA- I am not 'strictly' following the low ox diet... however, i am watching my sugar intake. i am a fool for chocolate and sweets. No more tea in the morning, no more kool-aid, no more chocolate (i'm dying!) :-) however...there are ALOT of listed foods on the 'high' oxolate list that i have eliminated. i think the calcium citrate tabs really help with the oxolate crystals in the urine as well.well, ladies, today is the day i was supposed to have the vestibulectomy surgery. i'm so glad i cancelled! i'm so glad i'm feeling better!!! this weekend i can proudly say i was feeling 95%!!! oh my gosh! it makes me so happy!!! AH!!! maybe it's because my husband and i were outside doing yardwork, or the sunshine or the warm weather, finally! this is the first nice weekend we've had since last summer! (i live in PA, don't ever move here, the weather stinks!) So, i'm continuing my supplements and vitamins and my 'no sugar' diet. Today is not nearly 95%. isn't is funny how we change from day to day? I feel more like 70% today. 'ouch'. let's hope that i NEVER have to reschedule that surgery though! i can't wait for the day when i can wear thongs again... not sure if that day will ever come, but hey, i can wish...can't I? :-) have a great day ladies! (and Frank!)
CommentTo Rozlynn: Glad you are feeling better. I've had kidney stones so I looked into low oxalate diets at the time. I don't follow the diet I just drink more water and I've been lucky so far. With the vitamins I think vitamin C can cause problems with the oxalates check it out. We live in CT and I hate it here with the winters. I want to live some place tropical but that's only gonna happen in my dreams. Take care.
CommentROZ-White chocolate is allowed on the low ox diet. BUT its got sugar. So maybe for a little treat sometimes that can be an option.Feeling pretty darn good today! (Oh how GORGEOUS it is out today in the sunny state of Fl.It's a PERFECT day, not too hot, not too cold tho I could go with a little cooler, its still just beautiful out. One of those days where if I COULD wear jeans I'd go skydiving cause its just so beautiful out) :O)
CommentDoes anyone out there know a vulvadynia specialist in northeast New Jersey. Dr. Catarina Gregori of St Barnabas has retired and I don't know who is an expert gynacologist (not obstretrics) in Essex, Passaic or Morris counties. ThaNKS A LOT.
CommentHello to all fellow sufferersAfter having a breast tumour and taking Tamoxifen for 6 months, I developed what I thought was thrush. After several treatments which made things worse and worse I was given estrogen cream - things got better, things got worse again. My GP has been very sympathetic and finally after 2 years I have seen a consultant - who was an absolute pig but has made I feel the right diagnosic of disesthetic vulvodynia. He handed my a course of Imipramine and I set off to look through the net for myself. Having read the side effects of Imipramine I nearly cried - why hope to cure one thing by giving yourself half a dozen new symptoms?Anyway, I'm going to discuss some options with my doctor tomorrow. To the person who asked if there could be a link with thyroid - I have had an underactive thyroid since having my daughter over 16 years ago. I also used to have frequent bouts of cystitis, thrush and have had 2 caesarean sections - all "risk" factors. I am 53 now and am in constant pain - I haven't had sex with my husband since last August because I can't bear the thought and have no sex drive left! Thankfully, he's a very understanding man and I hope SOMETHING is going to cure this very debilitating condition.
CommentFRANK... I too drink water every day hoping to help decrease the oxalate crystals... so far, so good. i drink so much water, eventually i think i'm going to float away! :-) I also did hear about vitamin C causing problems with oxalates... strange...CANDI- white chocolate?? hmm... i want milk chocolate!!! I'm running to the store right now! Oh, and shut-up about living in sunny florida!! :-) I am so jealous! There was something else you wrote about that i never responded to....oh yea, low iron causes yeast infections? I never heard of that. Well, hopefully with my iron pills and all the other supplements and vitamins i've been taking i can keep this under control. Also, i forgot to list that i am taking fluoxitine. 20 mg. When i started this med. the last time i had vestibulitis, it went away. So, i'm not sure if the fluoxitine has anything to do with me feeling better or not. Maybe it's a coincidence. And not to mention, i also put A+D ointment on my little vestibule glands to help protect them. That way, when I urinate, it doesn't burn. Very handy hint from my doctor! The witch hazel pads don't seem to do anything for me. Enjoy your sunny florida! (I'm so jealous!!)
CommentJoy - Don't want to scare you but i think i might know u, u have the exact same name as one of my mums friends and u have a UK email address and uve waited to see a consultant for 2 yrs so sounds like ur in the UK like me! my mums friend also had a daughter just over 16 yrs ago who went to school with my sister, may just be a coincidence. Hope i havent scared u away now, but it might be nice to know of a fellow sufferer whose not to far away even if its just to share emails of anger about the NHS waiting lists or just to share treatment information and experiences. Feel free to email me take care and good luck.
CommentROZ-Yeast infections cause low iron not vice versa
CommentThis is my first entry, I have read many of your emails and I haven't seen much on surgery. I have been suffering from this for over three years. My pain is so bad and if I even try to have sex my skin just rips and bleeds. I am schedueld for surgery next month. I would like to hear from someone who has had the surgery, I have tried everything and my realationship is becoming strained! Thank all of you for all the helpful information and sharing your very personal stories!
CommentThis is my first entry, I have read many of your emails and I haven't seen much on surgery. I have been suffering from this for over three years. My pain is so bad and if I even try to have sex my skin just rips and bleeds. I am schedueld for surgery next month. I would like to hear from someone who has had the surgery, I have tried everything and my realationship is becoming strained! Thank all of you for all the helpful information and sharing your very personal stories!
CommentCANDI- Whoops. Duh... i must've mis-read your input. :-) Ok, so yeast infections cause low iron. Got it. Thanks. I wonder how the two are linked? The fungal detox you are doing...can i order that from the internet? you mentioned it was name brand 'dr. recommends'....is that correct? you also stated that all the other anti fungal stuff i'm doing may be useless if i still have fungi, correct? so i need to fungi-detox, first, before trying to prevent any more fungi... do i have this straight?? Do you have a link to the 'dr. recommends' fungi-detox you take? I'm really interested. Thanks! P.S. Catch some sun for me today...we've got clouds today, AGAIN!!! :-( Looks like it's going to rain too.
CommentCANDI... I also had some white stuff come out... EW. It looked like mashed potatoes. I'm not kidding...Yuck.......Grossly enough, i put it into a plastic baggie and took it to my doctor. He then sent it to pathology. The report came back stating that it was dissidua (sp?)... basically dead uterine tissue/lining from a pre-term pregnancy i lost in February. I haven't had any more since. It was a one time episode.
CommentHas anyone tried Nystatin vaginal tablets? If there is a possibility that the problem may be yeast, you might want to give it a try. I know most people on this site do not want to put anything into their vaginas, but I think this may be an exception. It is not gooey like the creams. I have been prescribed terazol, and have taken many other otc creams, diflucan, sporanox etc. There is barely any discharge with these tablets. I have been using them for 4 days now and my pain is entirely gone. It comes in a 15 day supply. I have read on the internet that resistant types of yeast respond better to older medications like Nystatin. I know many people on this site take oral Nystatin, however from what I know, it is poorly absorbed and does most of its work in the intestines. So I am not sure about it getting into the vagina. Also it is nontoxic and probably one of the safest antifungal out there. Also, I have seen stringy, chunky things in my discharge. I personally believe it is yeast. But that is my own opinion. Before my appointment with my doctor, I was totally fatigued and overwhelmed with depression. So I got down on my knees and prayed to God that He would give the doctor the wisdom to help me. She prescribed this medication to me, I didn't ask for it. God answers prayer. Just ask Him, he'll give you the answer!!!
CommentROZ-Here is a list of the Dr. Recommends products. I get them from my QX lady.Before you order it let me see if its working on the fungi first. I have to call her Monday to set my appointment which will be either Thursday or Friday of next week. I am over half thru with my bottles of bacterial and fungi-fuge and she will use the machine to see of my numbers have gone down. If they have gone down then I will probably do another bottle of it. I just want to know if its taking care of the fungi. If its NOT, then I am going to try Fungal Defense by Garden of Life.If you are feeling better then your product just might be working. It takes time. It can take about 6 weeks to even notice somehting working because it has to go thru your system and then start to go at it.So before you go buy anything else, keep up what you are doing and let me go thru my testing with these products and see if they are working. I'll be the guinea pig
CommentWhoops, for got to add the link to the productshttp://www.whitedovehealing.com/homeopathy/hormetic.shtml
CommentCANDI-Thanks!
CommentTo Ak: Please keep your faith if it helps you but try not to bring God into this. Not all prayers are answered.
CommentIf prayers arent answered by those who believe, then it's not Gods will. God has his reasons for everything.
CommentHas anyone used TEA TREE OIL? I read somewhere that if you moisten a tampon with tea tree oil and insert it into the vagina overnight, it may relieve yeast/bacterial vaginosis symptoms. With all the infections i get, the last thing i want to do is put something else up there! Has anyone had success trying this?? The link that i buy my vitamins/supplements on states that tea tree oil is "anti-microbial" and is used to treat "vaginal infections". It also states that tea tree oil is used as/for "antibacterial, antifungal, antiseptic, immune stimulant". This is the link to the site where i buy my herbs/supplements. (however, they do not sell oil, only supplements/herbs.) They are made and packaged fresh on the day you order them and stamped with the date of your order. the shipping time was excellent. i ordered on a friday and received my products on a monday. http://www.viable-herbal.com/homepage.htm If anyone has tried this and had success, i'd appreciate hearing from you. Thanks!
CommentKeep your rosaries off my ovaries!If I sat here and spouted out why I don't believe in God, you wouldn't want to hear it, so what makes you think we want to hear about why you do?Put some of that energy into challenging why your church doesn't want us to control our own fertility or discuss our orgasms and then ask yourself why there are so few doctors who think female sexuality is even worth talking about.
CommentKeep your rosaries off my ovaries!If I sat here and spouted out why I don't believe in God, you wouldn't want to hear it, so what makes you think we want to hear about why you do?Put some of that energy into challenging why your church doesn't want us to control our own fertility or discuss our orgasms and then ask yourself why there are so few doctors who think female sexuality is even worth talking about.
CommentRoz - i have heard tea tree is good for thrush but ive never dared try it!! it might be worth agoI decided to try putting a bit of sudocrem, which has zinc oxide in it, on today as one of my doctors mentioned it a while back but ouchies!!!!!! and i tried aqueous cream the other day with no help either, im thinkin im just gonna leave the area well alone and not put anything on it, it just seems to make me burn 10 times more!!!! im trying antihistamines at the moment to but they dont seem to be helping either, im going to try and get my Elavil dose up to 20mg at the end of May because ive been on 10mg a night for a month now with no success, im willing to give it till the end of May but after that i wanna take a higher dose if ive not felt benefits. Hope everyone is having a good day.
CommentFirst off, we dont need negativity here. If you arent brave enough to post your name here then dont spout off with your sarcasm.And we are complaining about our vulvas, not our ovaries. Your negativity goes WAY beyond your disbelief in God or any other higher power for that matter and maybe you are the one who needs it more than the ones who DO believe in somehting. And not all people who believe in a higher power are Catholic so as far as your comment on rosaries goes, maybe you need to learn a little more about different religions before you say nasty things to the religious members here. Not all people who believe in God use rosaries.AND I dont see them preachong to you or trying to convert you you know what you can do with your comment to them. But for those of you who mention God here, it dosent look like it bothered anyone but the usual woman who never says who she is so don't worry about it, shes the negativity here about 95% of the time. If your search for help includs your pastor or counselor or shrink, then you feel free to put that here. ALL stories are welcome. And I dont think anyone here talks about orgasms in church. Why dont you find a group where all the women do is sit and cry over themselves and talk negatively to one another. This isnt the group for you.````````````````````````````Secondly, I used Tea tree oil on a tampon inside and I only used it once. I touched the outside skin when inserting and it caused awful pain for over a week. It DOES help with yeast., but for us, it can do more harm than good. Same with boric acid suppositories. I used both adn inside they were find, but once touched the vulvar skin, it was terrible.
CommentJENNY- thanks for your input on the tea tree oil. i don't think i dare put anything else up there either. that's why i was asking.CANDI- thanks for your input on the tea tree oil also... and 'preach on sista' for the comments you gave to the anonymous person who is so concerned about her rosaries on her ovaries or whatever.... This IS a positive site, and we don't need any negativity here. And as Candi said, we're discussing our vaginas, not our ovaries. Way to go Candi! You're so cool! :-)
CommentJENNY- p.s. I'm taking fluoxitine 20 mg. (generic prozac) for depression. When i had my last battle with VV about three years ago, i went on fluoxitine for depression and coincidentally, my VV symptoms vanished. Completely. Only to return this past october. Presently, I am on the fluoxitine again (for a lost pre-term pregnancy in Feb. this year) same dose, 20 mg. And my VV symptoms are better, I'm almost 90 % today. :-) I'm not sure if it's due to all the other supplements and vitamins i've listed on a past posting, or if there is something about that fluoxitine that helps the VV. I'm not sure. But if your elevil doesn't work at 20 mg., maybe ask your doc what the difference between elevil and fluoxitine is. There may be some connection there that we're not aware of...or like i said, it may just all be a coincidence. Hope this helps.
CommentPlease be careful if you try Tea Tree Oil. It made me burn really badly and I had to wash it off immediately.
CommentThanks for all the warnings about tea tree i think we'll all steer well clear of it now dont wanna risk it, i had considered bathing in it but i def wont nemore, if aqueous cream burns no doubt tea tree will. Roz- thanks for the fluoxetine advice i definatley think its worth a try if other options dont work.
CommentROZ-I am not very farmiliar with Prozac. Is it like Xanax and you take it just when you are feeling down or is it more like Elavil that takes 4-6 weeks to start to work and you take it daily? How often do you use it?I KNOW I need something like this and thought about St Johns Wart, but there have been too many negative reports on it. My QXCI testing showed definate emotional things going on there. When she typed in VULVA (it shows what is going on in the body part you enter) It said that there are emotional problems and heavy metal toxicity going on down there. I used Elavil for a few months and was up to 30mg just at night tho as directed since it made me so tired, and it didnt help and I was sleeping all the time/It's just hard to call your doc and say, hey, can I have some Prozac? LOL She offered me an antidepressant before (newest doc) and I turned it down. I'd used Elavil and Pamelor before. PAmelor was terrible. I had shakes and lost a ton of weight and everything.I hate to take things that later my mind chemically. Ithink I'll ask my nutritionist (QX lady) if she can recommend somehting herbal that is close to Prozac. If the Prozac is makeing you better then it sounds like alot of your trouble can be nerve related. If you had bad yeast infections, those can cuase your nerves to be irritated and it is so hard to reverse that. The way you can tell if its the Prozac that is helping, you can go off it for awhile and see if you get worse. LOL Sounds appealing huh?Thanks for the sweet words. Negativity ticks us of and makes us angry and that causes us stress a nd stress makes us hurt worse, so the last thing i want to read here is someone being so rude and nasty. They must be ashamed of themselves to not share who they are in the first place. If I have a prob lem with someone ill beb ig enough to say it with my own name.
CommentHey ladies, I am sick of reading negativity here period. I don't like to read anyone being nasty, even if it's in response to someone else they perceive as being nasty. Or misunderstandings etc. Of COURSE we're going to have different opinions on things so let's just keep them to ourselves so this can remain a healing place. Let's keep the drama away from the guestbook altogether please? Thanks! :) Am buying a tonne of supplements tomorrow in keeping with what has been successful for Candi, Julie and I think Rozlynn. Will definitely keep you posted on my progress.
CommentRegarding God: Raised as a catholic my thoughts on God, Gods and the catholic church have changed many times. There are many religions and those who have no faith at all, I think they are all entitled to some basic respect. Personally I can no longer sit in a catholic church with my wife and daughters. I will not go against my beliefs and I believe abortion has a place in our society. I would prefer boys and girls, men and women take better precaution to prevent unwanted pregnancies but this does not happen in the real world. I believe divorce has a place also. Too many of us marry for the wrong reasons and stay together for the wrong reasons. No one should have to stay in a physically or emotionally abusive marriage because to do otherwise is a sin. I want to see women in positions of power in every religion, not just baking and fund raising but in decision and policy making. For too long many religions have insulted, ignored and abused women. When our infant daughter was diagnosed with a fatal genetic disease I did not curse God or blame the devil. I told my wife we are good people and this just happened, we did not deserve it. I also said life is worth living if you are willing to move on. You who are suffering from the many symptoms of vulvodynia can't just move on and leave it behind, but you can keep trying to fight with all your heart. Recognize the frustration and depression and keep fighting . If religious belief helps then pray, if the company of a friend or loved one helps then stay close to those who can offer comfort. We know what today has given us, tomorrow may be the same, worse or better but it is worth finding out. I am very happy to see so many women sharing here. You are in a war and this site is like a headquarters gathering information to form a battle plan. Stay strong and keep fighting, if you give up you will never know what could have been. Best of luck.
CommentGIA- good luck with your supplements! Yes, please DO keep us posted on your progress...if you have questions about what i take, etc... please email me at the above address. I'd be glad to help.CANDI- I did some research on the fluoxetine for ya. I was prescribed it for depression only. As i was explaining to Jenny, it may have been a coincidence, but the two times i was taking the fluoxitine, (this time being the second time around) my VV symptoms vanished the first time, and after being on the fluoxetine for only about a month now, my VV symptoms are at 90% today! It may be all coincidence, it may not be. But yes, like you said, it may be nerve related for me. Maybe not. I don't know. But here is what i found about fluoxetine. 'Fluoxitine is a selective serotonin reuptake inhibitor.' (i'm just cutting an pasting these phrases from other sites i've found...) 'The medical name for Prozac is Fluoxetine hydrochloride.' Candi- Fluoxetine is the generic brand for Prozac. 'FLUOXETINE (Prozac?) is a non-tricyclic, non-tetracyclic antidepressant.' Candi- if you'd like to know more of my personal history while using the fluoxetine, you can email me at the above address. I'm not sure this webpage is the appropriate place to discuss this. I CAN tell you this though... I have no side effects. Well, that's not true...i lied. i have only ONE side effect. Trying to reach orgasm while on the Fluoxetine is next to impossible! But hey...at least me and the hubby are ABLE to even have sex! we've only done it about three times since February, with all the infections i have, and the burning.... it's impossible. I think my infections are causing my vestibulitis. I'm not sure. Maybe it is nerve related. who knows. I'm feeling really good today, and sunday was a great day too. But yes, please do email me if you'd like to know more of my personal history while using the fluoxetine. And that goes for anyone here that is interested. I just don't want to post my past history of depression on this site. it's not the appropriate place. But if you'd like to know details of fluoxetine, please contact me. hope this helps for anyone that was/is interested. it's late, i'm headed to bed. bye! :-)
CommentCANDI- sorry, never really answered your question about Fluoxetine... No, it's not like Xanax. Fluoxetine (i'll refer to it as F)...is a daily med that i take once daily 20 mg. I never took Elavil, so i can't compare the two. I was told F would take about a month to kick in. but honestly, the two times i've been taking it, i felt a difference in less than a week. I also heard negative things about St. Johns Wart. You can call your doc, explain to her about this website and all the suggestions you've been receiving...ask her to prescribe to you the F on a trial basis or something. you're the patient, you have rights. if you want it, she may just give it to you. (that QX thing sounds cool.) I never heard of Pamelor either. After losing our baby, my husband refused to take any 'mind/mood altering meds' as well. i try to tell him how much the F helps me, now and when i took it about three years ago. it's truly amazing how the med helps me. but everyone is different... Here's the thing... after using the F the first time around...(used it for about 4 months) just to help me get back on my feet... i went off it, and my VV didn't return until last october. So i was free of my VV and free of F for about um......2.5 years? it's late, i can't think straight.... so i don't know what the connection is there... i do know that stress makes us worse...that's where my F comes in handy!! i love the stuff and swear by it. i would recommend it to anyone. but that's just me. :-)
CommentI know my doc would give me whatever I asked for. Its tough to say whether or not its the F thats working since you were off for a few years. I fel really great today. I wore jeans and it was irritating, but not as bad as it CAN be. I look almost normal right now too. Have my next QXCI appointment next week. Looking forward to it.
CommentHas anybody lost their marriage because of this dreadful disease? My husband believes it's all in my head; even when I've asked him to look at this site, it doesn't matter. He still believes I've made it up.
CommentWhat are QX results? I keep seeing this talked about.
CommentTo DA: Sorry but your husband is a jerk. It is normal to think that, even doctors assume it is in your head but with sites like this, it is not in your head! My wife had pain during sex and even her gyno did not see anything wrong. I took a real close look after we had sex and she complained of pain and I saw what looked like a small paper cut at the 6 o'clock position. We pointed this out to the doctor and although he was of no help at least he realized there was something there causing pain. Now many women suffer with buning, itching and pain with no visible cause, that's the nature of vulvodynia. Could be nerve entrapment or damage from childbirth we don't know. As a guy I've experienced minor skin irritations to my penis and it hurts like hell, maybe your husband needs a wake up call and some compassion. Get him on this site and have him write a post , I'll answer him!
CommentTo. D.A. You can tell your husband there is a similar condition in males called prostatodynia or scrotodynia, in which certian areas of the male genitalia are afflicted with pain and discomfort. Maybe he could relate then. Also, although long overdue, the federal government now recognizes vulvodynia. In 2000, the National Institute of Health (NIH - part of the federal government), started funding research to find treatments for vulvodynia.
CommentAny idea in that past 4 years what they have come up with for us? A newer antidepressant maybe LOL So where is that money for funding going? I havent heard of anything "new" that is being looked into. a few universities doing some "experimenting" and they ask for volunteers. There was some cream, i forget the name, tht a doctor was trying out thru one of the universities. So far its not working tho. ````````````````````````````````````````````````````I am the only one here who has done the QXCI testing. It stands for Quantum Xrroid Consciousness Interface.Its a sort of biofeedback machine. Heres a link http://www.braintuner.com/quantum.htmSome people have shown positive interrest, some havent. I have Su, who used to post here, going on May 5th out where she lives. I am feeling SO much better. DEfinately more good days than bad. Still have bad days and am not 100%, but much better. Its almost period time and usually I'd be in hell right now and I am not at all. The machine uses your subconscience and your bodies energies to tell it what is bothering you at the time. Your main area of complaint may or may not be what your subconscience says it is. I thought all sorts of things would come up about my vulva and instead it was mainly a fungal problem (which could be related) and my emotions. I thought tht my vulva was more inportant than my stress that I suffer lately. My body however said differently. IT said my emotional state as well as this fungus were most important. She also was able to type in a body part adn it tells whats causing that area to suffer. It came up that emotional things and heavy metal toxicity were the main areas of concern with my vulva. That was interresting. So tells me that stress plays a huge rold. Mom went with me and she was rolling her eyes the entire time. Shes not very open to things. She doesnt know about my muscle testing for that fact. She started showing interrest when this machine was giving results about things that only she and I knew. She was so intrigued by the end of my 3 hour session (it went by VERY fast, was supposed to be 2 hrs.) that she made an appointment. She went for her first follow up yesterday and called me. She had surgery on her food about 2 months ago and it is stil killing her and at her last appointment her bodies main complint was her digestion. Shes been taking homeopathics for this, I get a kick out of that everyday, my very skeptical mom on homeopathics. LOLHer and my stepdad went to Vegas and came home Saturday and all the walking made her foot hurt SO bad and for her to complain it had to be awful. She went to her appointment Tuesday and hadnt mentioned her foot at all, but the machine sure did. It came up as her main things on Tuesday.Th stmach problems she was having are so much better too adn thats only after 2 weeks. Anyways, check it out and if you are interrested, I can help find you a practitioner.
CommentMy marriage was greatly affected by vestibulities. I really didn?t understand how much until I had surgery and was pain free. My husband only understood after my surgery and he saw the results of my being pain free. I was really worried that he wouldn?t be supportive during recuperation period but he was great. The day of my surgery while I was in post op my physician sat down with him and discussed the physical and emotional effects of my condition and what was necessary for recovery. This was his turning point - he actually started to understand that this was real and not some ______ female problem.
CommentI would like to hear more from people on Dr. Peacocke. I went to her for the first time today. What she told me made sense as my vulvar vestibulitis started when I was on the pill. (In fact, my whole gyn health went wayward when I went on the pill.) I have tried two bouts of Tofronil with the second bout doing almost nothing. I see an accupunturist who has gotten me to the point of not having daily pain. However, I still can't have intercourse. I have the red horseshoe, but no peeling skin.I would like to know what kind of success people have had with Peacocke. Should I get my hopes up? Thanks.
CommentTo Elena: Every new doctor holds the promise of treatment so of course you get your hopes up. If you have the time read several of the past guestbooks. Maybe 16, 18, and 20 just scroll down slowly and look for dr.peacock. From what I remember many have seen her and except for complaints of high prices and not taking insurance I don't remember anything outstanding. All the experts seem to take advantage of our condition. Don't get upset but since there are no know causes or cures you may not get the results you are hoping for. Give her some time and follow her advice then make up your mind as to whether or not you are feeling better. Please post your results. Bye.
CommentELENA-You get peeling skin?? I have complained about this for the past year. It usualy only happens when I use a cream or ointment though. It happened once when I was taking Nizoral orally and my derm. said it could have been an allergic reaction. Who knows. It wasnt peeling by the time I got in to see her.I was on BC's when I got my VV too, but had been on them for 7 years with absolutely not a problem, not even so much as a yeast infection so I dont think there is a relation for everyone, but I believe there is for some people. Have her check your hormones. I have been off of my BC's for 5 months this month and there has been no huge change until the past month and that was when I started treating homeopathically for fungus. I dont credit the lack of BC's for my change. Wish I could. There have been women in other guestbooks who say they got completely better after discontinuing use and then about 2 months after going back on they got VV again. So its something to try. It can take anywhere from 4-9 months to see if it will work.
CommentHi!I have burning with discharge for year and a half now. Everything started with ?appendicitis?. After surgery they told me it wasn?t inflamed at all and didn?t have a clue what it was but they gave me antibiotics and then I got Candida. I tried a lot of things but it was only worse and then ?yeas free? diet with garlic and caprilic acid killed Candida, but discharge with 24/7 burning is still there. I can?t go to work, I can?t walk almost at all? Seen many doctors and no one knows what it is. There are no bacterias or Candida and they all tell me that everything is fine with me? but you have all been there so you know?I can only guess it is vulvodynia so it would be really helpful if you could answer me does anyone feel better when sitting? That?s the only thing I can do, walking is a real hell?Did anyone try noni juice? Or Oak Bark tee to sit in? I tried to sit in water with bicarbonate soda and it was only worse.It makes me really happy to see that some of you are still able to feel positive, I was for some time but lately I just sit and cry. I?m 27 years old, have a great husband who is very supportive and it makes me feel even worse when I see how he suffers for my pain. He is trying to find doctors, natural medicine, reads everything he can find hoping there is a way out. We never had normal sex life, only a couple of months on a beginning of our marriage before this hell started. When I was young there was a war in my country and believe me, it was a real Disneyland for what I?m going thru now. Do you have any advice how to cope with depression? Sorry for my English, but I hope you understand everything I wrote and thank you so much for sharing your stories. There must be a way out of this and we have to find it. I wish you all normal and happy life and thanks in advance for any answer to my questions.
CommentHi!I got diagnosed yesterday after a 15 months of agony that began with first intercouse (wedding night). I've never been diagnosed with a yeast infection, but the GYN put me on 4 weeks of diflucan as a precaution.Could someone post a list of the herbal supplements in a list format (more printer/eyeball friendly) with a note as to where to get them, (ie GNC, or specialty shop)?Also, for those who've tried Amatryptiline, did it knock you out completely? I'm waiting till the weekend to try it just in case. most importantly, did it help you? Thanks In Advance!
CommentSJ-For some reason when we try to list things in a "printer friendly" way it posts the way you see all of the posts. One huge paragraph. What types of herbs are you interrested in? I am prejudiced to a few brands and know mostly about ones for fungus, and immune support etc. You can also get herbal books at health food stores. There is one called the Herb Bible. I dont own one. I use my nutritionist and health food store people for that. My nutritionist/QXCI practitioner is friends with the lady at the new health food store I go to, which i love. MAJA- Your english is just perfect. :O) You can have problems with bacteria and candida without it showing in a vaginal culture. You will learn this fact quickly here. Most doctors do not agree with that, but it is true. My present GYN, she is the 9th one I have seen in the year and a half I have had VV, said that we can have fungal problems that can affect the vulva even if nothing shows on fungal cultures. I also had an AWFUL discharge. It would pour like water and it was whitish in color. I would go in to the doctor and there would be nothing in my tests but she would give me Diflucan anyways and it would help for awhile then my period would come and it would come back. I recently used Nizoral for 14 days, its a strong antifungal, it made the discharge go away or quite sometime and then I got my period and it came back AGAIN, but not as bad. That was showing me it HAD to be related to fungus. So now I am taking a homeopathic detox for fungus and I have not had a problem with this discharge except for 2 days and it was nowhere near as bad as it had been and then it just went away. Two days was much better than everyday!I also had trouble walking. It felt like my skin would split open and I would even look with a mirror to make sure it hadnt split open. It never did :O)I can walk just fine now. Used baking soda in the bath too and it bothered my skin. Do a few things, if you are om BC pills, throw them out, you dont need them anyways of you cant have intercourse, cut out sugar, if you need somehting sweet, eat a piece of fruit, but try not to eat more than 2 pieces a day because of the natural sugar content, eat plenty of fresh veggies and ocean fish, chicken and turkey. Limit red meat and pork. If you believe in natural detoxes, maybe try one for fungus. There are many for candida, but get one for a variety of fungi, and maybe get one for bacteria as well. You might have to use more than one bottle. I believe that liquids work better. I am using a homeopathic called Fungi-Fuge and antother one called BActeria-Fuge by Dr. Recommends. I get it from my nutritionist and its only $14 a bottle. I feel really good. ITs only been 3 weeks. Also you have to use a probiotic to get more of the good bacteria in there. Its also good to cleanse for parasites. Most people have them as gross as it may be to think about. The parasites surround fungus and feed off of it. All of that disturbes the digestive system and causes your immune system to become weak. A weak immune system doesnt help us in anyway to fight off infections.If you need help in anyway going the natural route to try it out, feel free to e-mail me personally at the above address.
CommentHello All,I posted in here a few years ago. Since that time I was pregnant and had a son. During childbirth, I had them numb me so i did not feel the pain. I was pain free for one year. The best year out of the last 5 years for me! It has been six months since my pain has started back up. Its actually getting to the point where I cant walk or function again sometime throughout the day. Does anyone use anything for temporary pain or on a daily basis (herbal) that relives their pain? Thanks for you help.
CommentShannon-I just started on something called FYI (For Your Inflammation) by Garden of Life. It takes time to start to kick in. You can do a Google search on it. Just type in FYI Garden of Life.Sounds like your troubles may be nerve related. Its hard to reerse the effects of inflammed nerves. Thats why they put us on antidepressants. I am going to ask my nutritionist if there is anything herbal or homeopathic I can use thats similar to chemical antidepressants. Besides St Johns Wart. I have heard alot of negative things about it the past few years. If she tells me of somehting I'll post it. I see her next Friday.I have emotional things going on like many of us do. I am agrivated about an abnormal life and theres just so much stress on me and that makes things worse. Thank God I have a man who loves me and supports all of my crazy things. So if I find somehting to help ease my stress then it should help if theres nerve pain as well, just like antidepresants. Heres a link to it from the Garden of Life website http://www.gardenoflifeusa.com/immunity_inflammation.shtml
CommentHi,I've been suffering from vulvodynia for 13 years. It is a specific type that affects mostly my clitoral area and the front part of the vulva. I want to share my experience and also ask a few questions. Of those years, I spent 7 without a diagnosis and thinking that I couldn't possibly be the only women in the world with this but the million doctors I saw all looked at me like I was an alien!!! I know you can relate. I also have to say that a lot of those years were good where the pain wasn't there at all or barely and I figured I was cured! I even did quite a bit of mountain biking for a couple of summers! But for some reason it comes back. I met my husband 5 years ago and although I told him I had this strange condition, it took about 2 years before he actually saw me (supported me) through a flare up. That one happened after a miscarriage and curetage. The next flare up was after I gave birth to my daughter who is now 2 years 4 months old. But that one didn't last and I've been quite normal since! I'm now 7 months pregnant and going through a very bad flare up. It started about a month ago. My whole vulva felt as if I had pieces of broken glass in it. I couldn't get dressed or walk or go to work or really look after my daughter. So I cried and cried. The pain is now better. I'm off work and won't be going back. (For a year or so) Initially I just applied ice but after a couple of weeks I decided, with my doctor, to try Elavil. SJ- I felt awful for the first week, dry mouth, bad taste, very sleepy but now, after 3 weeks, the side effects aren't so bad. I'm not sure whether the Elavil really made the difference though. I've also been going to acupuncture, which seems to have made a difference, I'm doing all my pelvic floor exercises twice a day, doing relaxation exercises, seeing a psychologist, etc.I've also been reading lately on the benefits of Omega-3 fatty acids. They seem to play a role in inflammation and pain processes in the body and also on mood and depression. Many web sites talk about it. So I figured why not and I'm taking Omega-3 supplements as well.So I'm hanging in there, knowing that eventually the pain will subside and I'll go back to the way life was previously. I'm angry that I have this and that it is interfering with such a happy time in my life. And I want to get off the Elavil. Although it is apparently safe for the baby I hate to be taking it.Here's my question: What type of underwear do you wear? I always buy the 100% cotton but there is always a stupid seam that sticks up right in the middle of the vulva. And that really bothers me. Am i the only one with this problem??!!Have you found any type that doesn't have seams?Thanks for your suggestions!Dominique
CommentDominique- I LOVE your name!I find that no panties is much more comfy. It takes some getting used to though. I try also to mainly wear skirts or dresses. Sometimes I wear track pants that are baggy. During menstruation, I use a tampon. Had to make a choice, wear a pad that is constantly touching me and rubbing or to quickly insert the tampon and deal with that pain for just a few seconds. Once its in, no problem. Also using somehting for lubrication around the vaginal opening before inserting it helps. I am taking Omega 3 as well when I remember I take a few things so I forget sometimes. My friends herbalist e-mails me sometimes and when I mentioned Omega 3 she said the best brand is NAtures Sunshine. She said so many people will just grab one and not care about quality. I was guilty. I bought one from Walmart. I like the advise of professionals. Also its important to eat fish. Ocean fish. You can get as much Omega 3 tht you need from fresh fish. Just be aware of mercury content of the fish you eat. I stick with Salmon mostly and will eat tuna once a week. You can find mercury content for different fish on the CDC's website. Have you had your hormones tested?
CommentHi CandiI haven't had my hormones tested but when I mentionned it to my doctor a couple of weeks ago, he told me I couldn't possibly have a problem with estrogen considering I'm pregnant and there's lots of estrogen during pregnancy. He also checked for yeast (under the microscope and with a culture) and didn't find any. My problem is generally not with the vagina i.e. I don't have vestibulitits. It's mostly with light touch to the front part of the vulva. If I can tolerate foreplay, intercourse isn't so bad! My mom made me a bunch of pregnancy skirts so that's what I'm mostly wearing at the moment but even the panties underneath are a problem! For years I always wore panty liners, mostly as a physical barrier against seams and whatever but now I read that I should really avoid using them so much as they can be very irritating. (although I wore them for years without having pain, go figure!)These days, whenever I leave the house, I have an anxiety attack as I just don't know what to wear that won't hurt me! And, I live in Montreal, Canada and we've had a few spring days but it's been mostly rainy and cold in the last month. I feel a little funny (and cold!) wearing skirts with no socks. ( I know, I know, Florida is beautiful these days!!!)The way I see my condition is that I need an irritating factor, for example, yeast, or soap, or rubbing, or discharge and when my nervous system has started firing signals, it just doesn't stop even when the initial cause is gone. I think that's why I can go for years, as I have, feeling quite normal as long as I avoid irritating factors. Of course then I don't bike, don't swim in highly chlorinated pools, don't use soap, pad dry with a paper tissue , etc, etc, etc. As we all do probably. This time, I had a lot of discharge for a couple of weeks, which is normal during this stage of pregnancy, but I think this is what triggered the whole thing, plus I continued going to work and doing normal things so it only increased the pain more. I've now been home for 2 weeks and it is a lot better. Interesting too that during my first pregnancy, I didn't have a flare up. A little discomfort near the end but that was it.I'm not sure what else I can do at this point. I think I have to try to stay sane, calm and naked for the rest of the pregnancy, hoping things will settle back down afterwards.As for Omega-3 I had read that the brand name Joy was a good one but I'm taking note of the one you mentionned.Thanks for your input,Dominique
CommentDominique-I have pain in 12 O'Clock position adn my clitoris is pretty sensitive. My pain originated in the 12 o clock area. The the pain spreads down to the vaginal opening. My redness looks like an oval from the 12-6 positions. Even on days that I have been pain free for some odd reason the 12 o clock area is a little sensitive, but not painful.The huge question is, how to we calm those nerves for good? I am looking into natural things for this. And I am sure it will be hard and take awhile. It gets cold in Florida too :O)It was in the 20's this winter. I dont work so I just stayed home with the heat on. Or wore track pants with no panties. I NEVER wear panties. Maybe try some that are too big so that they sag in the middle. Not very attractive I know, but whatever works!Alot of us have trouble with discharges, even when not pregnant. AND too much estrogen can actually cause some problems! If you were unbalanced before pregnancy then an addition of estrogen because of pregnancy could cause the flare. Su, who posts here every now and then, just had her hormones checked and she had an overabundance of estrogen adn hardly any progesterone.
CommentCandi-Thanks for your post. I think mine is nerve related. I have always thought that. I have had this since I was 20. Its made my life very difficult (we all know how that is) Thankfully my husband understands. I also have pain that shoots through my butt and thighs sometimes to my feet. Does anyone else have this?Shannon
CommentCandi- I guess I should ask to get my hormones tested. I'm not sure how much could be done while I'm pregnant though, but maybe for later. As for panties, I never wear them around the house anymore but I'm not comfortable not wearing them to go out. Especially with discharge being quite abundant sometimes...Sorry for the details, but I don't like it to stick to my legs or stain the back of a skirt if I'm sitting!!!Shannon - I get the shooting pain in my inner thighs and my butt as well. I find that's generally when I've been in pain for a while and my nervous system is over sensitive. Also, the muscles of my buttocks, pelvic floor, etc. are very tense at that point as I move as a block to prevent the pain. Generally, by doing pelvic floor exercises and stretches of my buttock and thighs and a few relaxation ( breathing, etc.)exercises, I manage to relieve that shooting pain quite a bit. Lately, I've been doing those faithfully twice a day and the pain stays localized in the vulvar area. Which is better than being all over the place!!Dominique
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CommentShannon-DEFINATELY sounds nerve related even more now.Look at the pudendal.info site.(thats all you have to type into your search bar) I have heard its worth the look if you think your pain is nerve related.SEE!!!! I'm not ALL about herbs people! LOL
CommentDominique- I wear my 100% cotton underpants inside out. There is still the seam, but at least the seam allowance is on the outside instead of rubbing up against me.
CommentOn the web site http://my.webmd.com/content/Article/13/1687_50227.htm?pagenumber=2 they mention that V V could be a genetic disorder. It's good to hear that someone is working on that end of this miserable problem!
CommentHi- I have not yet been diagnosed, but after reading up I believe that htis is the source of my problem. I am 20 years ild and for the past 6 months or so I have been having pain with intercourse. (only during, not after.). I have been to two doctors, (one yno) and they said that there was nothing wrong with me. But, the pain persists. It has been really difficult for me to deal with, and for my boyfriend to understand. It has really been getting to me. I am currently on a low carb diet, and I am going to try to cut out high oxalate foods to see if that helps at all. I am trying very hard to get through this, but as a college student with limited funds I am not sure if I can afford all of the treatments availiable. I would really appreciate it if anyone could offer some encouragement or advice. Thanks.
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CommentTo Dolores: Very sorry you are in pain at such a young age. I don't know what your family situation is ( parents alive and well)m but as the father of two daughters i would want to know if they were in pain no matter the cause and how I could help. Talk to your boyfriend and tell him you need to avoid sex for a while. Maybe you will heal from whatever is hurting, continuing to have sex and have pain is not a good idea. Confide in close friends and relatives, don't suffer in silence. This is a good place to learn and let off steam. Tell your boyfriend about it and if he has any questions we will answer. Avoid anything that can cause irritation, soaps, fragrance, etc. near your vagina. Wear only cotton underwear and avoid tight pants. Give yourself a fighting chance. Best of luck.
CommentI have had vestibulitis for 4 years and have come to the point that surgery may be the only treatment left. Of those who have had vestibulectomy did your gynae do the surgery and if so was he/her very knowledgeable about the condition. My gynae says she will do the surgery but I was wondering if I should look for someone who is specialised in vestibulectomies.
CommentHi, I have not posted in a while and was catching up. Candi and Frank I am very glad that you did not drop off, I appreciate all of the info. Do not listen to any of the mean comments. You have helped a lot people, including me, that read this site and have given me the boost I need to make myself better. I apologize for my last postings, they were negative, and I was not feeling very well. But your responses have helped. I have cut my sugar and now taking more calcium citrate, I just got some new vitamins today. I went to the Dr's last week and she said I look a little better so it is promising!! I am getting some new oil treatment, it is natural and I will get it this week, I will let you all know what it is called. If this does not work she is going to try a treatment that she said has helped 90% of her patience. It is some kind of chili pepper cream or something like that, you put it on the Vulva area for 20 minutes a day for 6 weeks, she said it will burn, but has HELPED most of her patiences. For now I am on the 6 week program, I go back to the DR every 6 weeks and if the current treatment is not working we go to the next step. For what it is worth, I mentioned if before but, my DR is Susan Kellogg at the Pelvic Floor Inst. At the Graduate Hosp. in Philadelphia, PA. She is sooo nice, she listens and cares about what I say. She even said it may take a long time to get better, but if I work with her, and call her with any questions she will help me to get better. She will not give up on me as long as I do not give up on her. I mentioned that my husband and I have not had sex for 6 months and she said we would have to take care of that for you. That made me happy! For those of you in PA near Philly, I highly recommend her.... I will let you all know what the oil is when I get it. If it does not work for me, it may work for someone else.I did get Dr. Glazer book, it has a lot of information and it is good to read to better understand VVS. Thank you all for your information.
CommentI forgot to mention that one of the High Ox foods was peanuts, I used to eat peanut butter at least once a day or more. with the sugar and peanuts, I am sure it was not helping. I have eliminated that too.
CommentHey ladies, this is for anyone who suffers from vestibulitis as well as chronic vaginal tears/fissures:It seems like I keep hitting walls with everything I do to try to get better. I just attempted intercourse, went slow, with lots of lube and bad news!...I tore again. My dh and I havebeen sooooo anxious for sex and well one thing lead toanother and I just said," Screw it. let's try it."Well I made sure I had enough lube. But as he wasentering, I felt this sharp excrutiating pain on myleft side and I made this face. I felt something tearupon penetration. Needless to say dh got so worriedabout my pain that he had problems of his own...weweren't able to finish and I've been completely soredown there. I even think I should call in sick to workbut I don't have a lot of sick time left (I used somuch already)...well I have some bleeding down thereand it hurts to sit. I've had problems with tearingbefore (one tear had to be sutured) and they usuallyre-open, never completely healing. This new tear is ina new spot (the 7 o'clock position) and it's smallerthan my last tear, but it feels like a razor bladeslash! Does anyone know how to keep the swelling down?Do you think I should just leave it alone? I already have a big problem with inflammation with the vestibulitis and everything, and I don't want to make this worse. Help!!Thanks,M
CommentM-Have you ever looked into going on disability? I know thats no way to tell someome to live, there are so many people out there scamming the government of much needed money, but we have a REAL problem and in alot of cases it is debilitating. How can you keep a job if you are always calling in sick. There are many articles online confirming that it is a disability. Maybe find a doctor that knows about VV and then talk to an attorney that handles disability claims. I thought about it for myself. but Florida laws state that I had to work so many years out of the last so many in orer to apply. I was told by an attorney that she has a friend who could probably get me on, but I havent persued it. We really needed for me to go back to work especially because of medical bills and having no insurance. Its worht a thought if you are having that much trouble working.Have you had your hormones checked? I cant really think of anything else that would cause tearing of the skin.CAROLYN-Definately post about the oil and whether or not it helps and if you could find out the name of the chili cream or whatever, that would be great too. Ill use somehting that burns if it makes me 90% better. I used lidocaine 5% and it burned like fire until I went numb.So far so good tho with my fungus detox. I have my next QXCI appt. Friday and we will see if its working or if there is somehting else making me feel better. Either way, I'm going to continue to cleanse and repair and rebuild my body for healths sake. I was invited to a Habit of Health meeting through the Natures Sunshine Company, they will be discusing Nutritional Deficiency, Disease and the Standard American Diet. I am trying to talk my mom into going. My QXCI lady is a NAtures Sunshine distributor. Shes so awesome. She called me today and we were talking about inflammed nerves and she went to a conference Saturday and they were talking about inflammation. She has notes on that part of the discussion. she wasnt thinking about my nerves being inflammed so shes going to go over her notes and find out the new thing they are using (naturally of course) and we will discuss it Friday.
CommentJulie, or anyone else who may know, are there any side effects from estrogen creams? Or are they pretty safe? I'm just scared to put anything on my vulvar - sure you all understand. And, what is Olive Leaf for? Thanks!
CommentGIA-Why are you using an estrogen cream? Are you using it vaginally for the estrogen itself or on the vulva to try and thicken the skin? If the cream irritates you like it does for most of us, you can get it compounded. Make sure to use it sparingly. Just a tiny bit and rub it in as much as you possibly can. Using more will not be beneficial in any way. Gobbing it on can cause a yeast infection. If using it vaginally, it can cause a yeast infection. If you do not need it for the hormone then do not use it internally. Olive Leaf is a natural antifungal, antibacterial, antiviral.
CommentCANDI - I'm not using an estrogen cream yet - I only ask because it seemed to work for Julie and I think the hormone connection makes a lot of sense. I'm not sure of any other way to boost hormone levels. Thanks for the answer on Olive Leaf. I've just started taking all the supplements suggested by yourself, Rozlynn and Julie and am crossing fingers, toes, oh and legs but that's for another reason!
CommentHi,I went to see a physical therapist yesterday. I had seen her a few years ago, during my last flare up and it had helped, I think. At that time, I was her first patient with clitorodynia, and she had only seen a few with vulvodynia (many more with vestibulitis though) although she specializes in pelvic floor retraining. Now she sees many more with vulvodynia and has 3 or 4 patients with a clitorodynia like me! :-) Not that I want anyone else to have this condition but I'm still happy to see women are probably speaking up more and that the professionnals involved know more and more about it. She even now teaches a whole course on pelvic floor retraining including, vestibulitis, vulvodynia, etc. at McGill university physical therapy students, in Montreal. She said a few years ago she almost had to beg the university to be able to give an hour!! So that's good news! And in my case, she said that other women with my type of pain often have something neurological happening in their pelvis so she worked a lot on my sacrum, pelvis, etc If a nerve is entrapped somewhere, it should help. And actually, I was feeling pretty good yesterday. Was able to play outside for quite a while with my 2 year old without too much pain. So I'll keep doing the new stretching execises she taught me.Candi- Where do you find Olive Leaf? Is it an oil, a cream ?Thanks
CommentGIA- best of luck to you with your vitamins and supplements. I just had a cysto done yesterday. feeling pretty good today. hopefully, with my bladder in better shape, the bacteria i keep getting in there (i believe) is the source of my vaginal bacteria. SO...once i can get one under control, i can get the other under control and hopefully be on the road to full recovery. Had sex with the hubby on sunday, (it was my birthday) and the day before cysto surgery...not allowed to have sex for weeks after... Wanted to get my fill in! :-) Didn't hurt much until i started to dry up. Then afterwords, it burned bad. But the next day, it was as if nothing ever happened. So, that's progress! Usually i'd be sore for a day or two after having sex. I make sure to pee and cleanse myself after sex, to prevent any bacteria from settling in. We're able to start trying to get pregnant again on May 22nd. Let's hope it's a joyous event and not a painful one. P.S. DOMINIQUE: My VV this time around ALSO started when i became pregnant. The doctors all told me it was from hormones changing from pregnancy and all that jazz. Until AFTER i lost the baby this February, I knew there was a deeper problem than just hormones because i still had all the burning and constant infections! That's when i saw the new doctor and he diagonsed me with VV. Then, i came to this website and through CANDI's help and Frank and Wendi, i started on the vitamins and supplements and am feeling much better. Not 100%, but much better! Best of luck to you!
CommentGIA-Olive Leaf is a capsule. You take it orally, I think there is a liquid as well, You usually use the drops under your tongue. ROZ-There was something discussed in my Yahoo Group about UTI's and Bladder infections. Maybe read up on it through Google. Or another search engine, I just prefer that one :O) Its called D-Mannose. It supposedly works wonders. Never personally tried it. Not feeling so great today, may have something to do with my late period. I'm never late. I even took 2 pregnancy tests this week. Negative. Thinking stress is causing it to be late, happened before. I was alright yesterday though. It also could be from the food I ate. I had stufed flounder and according to my QXCI test, I am allergic to green peppers, and it had a few in it. I go Friday for my therapy. I love it because it shows areas that your body thinks is a concern. Last time it showed stress on my bladder and i WAS having some trouble that day. Kept having to urinate. It was gone the next day though. I just wish my period could come. This is rediculous.
CommentCANDI- Thanks for the tip. Yes, i get bladder infections, yeast infections, and bacterial vaginosis. i'm so sick of them all. i'm sure the infections are what is causing my vestibulitis. anywho..i'll be sure to check out the D-Mannose. in the meantime, i've been taking the cranberry supplements for the bladder health... we'll see what happens. your period IS probably late due to stress and the fact that you came off the pill recently, right? don't worry about it. i'm sure it'll come. I only get about 5 periods a year and they only last about 2.5 days. strange...and somehow i managed to get pregnant last fall. i hope i can be that lucky the second time around, given the help of my supplements and vitamins...hopefully the hubby and i CAN have sex to get pregnant again. and even more hopeful, that the VV doesn't get worse if/when i get pregnant again. that QX stuff sounds so cool. I know you said you don't have insurance, but if you did have insurance, would it be covered? i may check into that. thanks. hang in there.
CommentROZ- Some insurance companies are starting to accept alterntive health. Very few, but its a BIG step. Kind of like when they used to never cover BC pills.At least alternative therapies are being looked at in a new light. The insurance companies want to get their hands in the pot and since so many people are now turning to natural healing I guess they feel left out. LOLWith all of those infections you should really do some detoxing. IMO
CommentQUESTION!Hi ladies... its been a couple of weeks. I have been scoping out specialists and other alternatives. Has anyone been to the Pelvic Pain Regonal Specialty Center in Louisville, KN??? If so how did it go??
CommentHas anyone ever had an ultrasound of their bladder and ovaries? I am having one next week. I went to the doctor complaining about pain in my left ovary. As far as my burning, I told her about it again and said she only saw that it was as red as it normally was. What is a person to do? She did a pap smear and that is it! I told her I had splits in my skin after having sex. They were at 6 o'clock spot and on side of outer lips part where there is no hair. Skin did not feel good when I had sex and it burned inside the vagina. She told me some people think that could be herpes. I have been married for 24 years and both of us are faithful. We never go out by ourselves. Has anyone else heard of this? I have always read Herpes caused sores on your vulva area.
CommentTo Anonymous: If you've read any of the past guestbooks your symptoms are almost exactly those of my wife. We have been married twenty one years and we have both been faithful. Don't let any doctor put that in your head. Yes some men and women have problems from certain sexually transmitted diseases, genital warts and so on. My wife started to tear at the six o'clock position about three years ago. We don't know why, it's like a small paper cut and it heals and reappears when we have sex. She gets burning and itching and redness of the vulva. We don't know why and neither has any doctor she and I have seen. They are clueless. All they can to is routine tests and prescribe some topical creams and steriods. This illness is a mystery. I went with her to her last gyno and when we told her of the symptoms the best she could say is make sure your wife is lubricated, as if I was some kind of inconsiderate, abusive bum. That's not the problem. Something is happening to the skin that is causing it to thin out and tear. My wife is fourty four years old now and probably starting menopause. We still don't have any answers but we don't blame eachother. I have never been unfaithful and have only had one other lover in my life. I'm not bragging or complaining but I went to a urologist who did my vasectomy and had him check me for any sexually transmitted disease he could think of. He took blood, swabbed the inside of my penis, which hurt like hell and visually checked my body. Everything was negative as we had suspected. Even the women here who have been unlucky enough of contract a s.t.d. can tell you it is probably not the cause of their symptoms. The pain for my wife is physical and emotional for me it is a torture to have desire and love for my wife and know if we express it ,it will cause pain rather than pleasure. Sorry to go on, no simple answers like I said and no miracle working doctors that we know of. This does not mean things are hopeless, just very frustrating. Let your husband read these posts and if he would like to write and vent a bit I'll respond. Best of luck.
CommentHi,I just got a hold of an old book. Classic in its kind though. It's called "The brain revolution". It was written by Marilyn Ferguson in 1974! (there might be a newer edition, I don't know) There is a lot of information on pain, on the way our brain perceives it, on biofeedback, not just in terms of pelvic floor retraining but on all of our behaviors including our bodies' responses to pain, etc. There is even information on the Kirlian effect which is the way our body's responses can be put into images because of the magnetic energy it emits. It sounds a lot like the QX testing Candi's been talking about. I think I might try to look into it.Anyway, no miracle cure, just some interesting information. I think our pain is physically very real but if there is a way to train our brain to react differently to it, it'd be great! CANDI-Are you feeling better today?I'm generally feeling OK these days as long as I don't get dressed. So as a result, I don't want to leave the house. I'm getting a little depressed...
CommentCANDI- Who has the QXCI in your area? Do you know of anyone in Canada??!!
CommentDOMINIQUE-Well, i dont feel so hot today, got my monthly curse. I have my next QX therapy Friday. We are going to check my hormones. Probably will go back at my 21 day mark to make sure they are correct.Here is a link of practitioners. I am sure there are more, its just doig an online search to find them, this is a start though. Its how I found my lady. http://www.theqxci.com/qxci_practioners.html
CommentCANDI- I want to do the detoxing...remember i asked you about your fungi-fuge and you told me to hold off and let you be the guinea pig. i'm waiting to see how it works for you. then i WILL do the detox. please let me know if/when it works for you and then i'll order it for myself. i'm going to order that D-Mannose stuff too. Sounds like a lifesaver for me. Geeze. Remember the days when life was so care-free and pain-free? Gosh, what's happening to us all? So very frustrating. ANONYMOUS- I just had my bladder and ovaries done for ultrasound. Appears that my ovaries are covered in cysts (polycystic ovaries?) but my doctor told me not to worry since i lost the baby this february. the cysts will probably go away once i start menstruating reguarly again. i also just had a cysto done on my bladder just two days ago. doctor says my bladder is VERY small, hence all the infections and frequency i have. go figure. i just want to be normal again. i can't figure out why this happens to all of us and what we can do to prevent it/stop it. as far as your splits and cuts go, i'd take Frank B.'s advice. I think if you had herpes, your pap smear would've shown it, and it should be visible to you (i would think). I've never had any STD's so i can't really speak for that subject. if you have any further questions about the ultrasound, feel free to email me at the above address. good luck.
CommentROZ-I go for my next QXCI on Friday morning. If the Fungi-Fuge is working then my Fungi numbers will be down and my percentage will be higher. I will probably have to do another bottle. She was going to order another to have it there for me, but last time I was there, my bacteria levels had gone higher ( I hadnt started on the bacteria-fuge at that time) so she wants to wait and see both numbers. I'll post as soon as I get home.I was feeling miserable this morning and all red, got my monthly, and now am not feeling so bad, just around the caginal opening because the tampons slide down and start to rub. Better than wearing pads though.
CommentI went to the gyno. today. The doctor was telling me that VV is actaully easy to cure because all they have to do is cut out the affective area which is determioned from the Q-tip test. Unfortunately, valvodynia , which I now have, is not curable at this time because no one is sure what causes it. -Not exactly what I wanted to hear! She also recommended that I go to the McGee Hospital for Women which is located in Pittsburgh. She said that there is an entire group of doctors there who work with just vulvodynia. Does anyone know anthing about it? I live near Pittsburgh and have never seen anything online mentioning it.
CommentVV (Vestibulitis) is not just localized to the area just outside of the vaginal opening. The vestibule runs from the 12 O Clock position down to the vaginal opening in an oval shaped pattern. Usually the skin that is removed during surgery is the area south of the urethral opening. My pain is from 12 to 6 so even tho I have VV, the surgery wont help all of my pain. I have read so many of these sites where vestibulitis is said to be pain just on insertion or just the area around the vagina and started to question my diagnosis. UNTIL I read Dr. Elizabeth Stewarts book and in the first chapter she has a diagram of the vestibule so I knew my diagnosis was correct. I wouldnt have surgery anyways. Too risky in my opinion. I wouldnt want to go through that pain and then HOPE that the pain doesnt go to another area or that the scar tissue wouldnt hurt etc.Theres somehting causeing this, cutting out parts of our vulvas wont get to the root of the trouble.
CommentDoes anyone have burning skin between the buttocks along with the burning vulva?
CommentI've been burning constantly since last November 2003 in the glands just below the urethra. In the beginning I thought I had interstitial cystitis, but the freguency of urinating is much less, though I probably go pee a little more often than normal (8-10 x a day). I occasionally feel a stab like spasm in what feels near the urethra. Can vulvodynia be located in the glands just below the urethra (skene's area) and no where else?
CommentI have been reading this site for a long time now but this is my first input. I was diagnosed with V V AND vulodynia about 15 months ago. After reading all these posts, I was afraid to try anything in fear that it would make my pain worse. But out of desperation I did undergo surgery. And it ended my VV problem. (I still have vulvodynia.) I'm glad I did! Although I would like to get into the natural cures, I just don't put much stock in them. I once went to someone for migraines. The "doctor" had me stand with my arms straight out and then she placed a natural herb in one of my hands. She then pressed down on my arm saying that if my arm was easy to press down, it was not the nutrient/vitamin I was lacking in. Holding a concentrated amount would "give my body the strength it lacked" and make it hard for her to press my arm down. I should mention here that the natural herbs she gave me to hold were still in their sealed bottles in boxes! I thought she was joking and started to laugh, but then realized she was dead serious! Out of embarrassement I bought the herb!!! (And never went back!) And then about 2 years later I went to a chiropracter whose office assistant did the SAME THING! (This time I didn't buy it.) And another time I did have blood work done because the certified nutritionist insisted he could help my headaches. I took alot of soy tablets and still have the migraines to this day. Anyway, my point is, while natural cures may be what some people believe in, don't belittle surgery. I'm living proof that it does work. This site should be a souce of ideas and suggestions and information about the various options and treatments available, not putting down something that one person does not want to try. Oh, and my VV was at the 5 o'clock location.
CommentLisa-"This site should be a souce of ideas and suggestions and information about the various options and treatments available, not putting down something that one person does not want to try. " I said IN MY OPINION surgery is not an option and was not putting it down. It IS a risk, not knowing whether all the pain you will go thru doing it will help or make you worse. It did not make you pain free and other women who have had it have become even worse. Some have been made better completely. Like I said, it was MY OPINION and I will not do it. Somehting inside is causing the pain. THAT needs to be fixed. Do not skim posts, read them entirely before getting upset. Did anyone here say do not do it, its bad, it will make you worse, you will regret it? No. What I said was "I wouldnt have surgery anyways. Too risky in my opinion. I wouldnt want to go through that pain and then HOPE that the pain doesnt go to another area or that the scar tissue wouldnt hurt etc. Theres somehting causeing this, cutting out parts of our vulvas wont get to the root of the trouble." That was in no way putting surgery down. And notice the words IN MY OPINION. I did not say MY WORD IS LAW. The thing the herbalist and the chiro did was muscle testing. Dont count THAT out. If you have read past guestbooks, Wendy, a woman who is PAIN FREE and has been for years, uses this for every single supplement, vitamin, food, shampoo, cream, anything that comes into contact with her body and she was made well using only things she tested positive on using muscle testing, and she is still well to this day with no flare ups. Lauren who runs the Vulvodynia support site believes in this as well, so do many women on other sites and a huge number of them are either pain free or very close to being pain free. You werent educated on this, you didnt even know what it was called.More specifically its called Applied Kinesiology. Most chiropractors believe in this. They should have explained it to you better. Its hard to believe in somehting you dont understand. Our bodies are made of energy, that is what will cause your arm to stay strong or go weak. If your body craves somehting then your arm will stay strong saying YES, I want this food or supplement or drug. If your body doesnt need it or if you have an allergy to somehting or a sensitivity to somehting, your arm will go weak, thats your bodys energy saying, NO dont put that in me. I wasnt much of a believer in things like this a year and a half ago either. It was very weird to me, but its making me well. It was worth opening my mind. I was given a mind and a body to study and understand. We were not put on this earth just to exist,To just get up go to work, eat, sleep and breathe. We have so much of our brain that we do not use. What do you think we could accomplish if we could tap into those unused areas. Why in this day and age are people so against expanding their minds power? You are still having pain despite the surgery, yes? I use muscle testing for most of what I eat etc, but do forget sometimes, but I am getting well using this method and taking only herbs and homeopathics. Now that you cant have surgery for the rest of your pain, what is your next method achieving wellness? A successful vestibulectomy is one where a woman can have her life back.
CommentTo Candi: I love how passionate you are regarding new things and different treatments. Having an open mind is a great thing. That said I hope you don't get upset that "In my opinion" I still don't believe in Applied Kineseiology. I'm not saying that it is a hoax and a scam, an old friend who is a chiropractor did say those very words to me. The fact is some people claim it works for them so it's hard to discount that fact. But as I have written in the past for myself and my understanding of supplements and life there needs to be a digestion and absorption of nutrients for them to have an impact on our health. Here we have another instance where the medical community and our government has just turned it's back on us. Rather than get involved and help prove this treatment one way or the other scientifically they just ignore it, like vulvodynia. We the public deserve to know whether or not it is the power of suggestion or the power of science at work. We each have our own opinion but ultimately there is a truth and falsehood to these things. The best we can hope for at the moment is a mutual respect and an atmosphere where we can discuss alternative treatments without condemnation. The testing you mentioned several times is something I am not familiar with so yes I'm skeptical about it but at the same time positive personal experience makes it more believable. This whole illness frustrates me to no end, I feel helpless and hopeless at times. You on the other hand bring new ideas to the table and refuse to just sit back and cave in, I really respect that attitude. I want to know more and hear more and while our opinions on certain things differ I am on your side and in your corner for this fight. Thanks for staying strong.
CommentWe definately need to be able to digest and absorb, we can test strong on a zillion different things, but if our digestive systems are not healthy, then we will not benefit from these things we need. As we age, our digestive enzymes start to become depleted for lack of eating raw fruits and veggies. Somethng new I learned. We get some of our enzymes from the food we eat and when we cook food, we cook the enzymes right out of it. Eventually our enzymes become depleted to non existent. Scary isnt it? Thats why it is so important to take an enzyme with our food. My moms digestion was worse than mine when she had the QX test done. She is a huge skeptic and had the test done just based on my results and now shes gone back all on her own. I'm proud of her for opening herself to somehting new. She went to see Nonna, our herbalist (Marie is the QX lady, they know each other from a nutrition class), but Nonna wasnt there. She needed an enzyme. She called and told me that the other lady there gave her one by Dr. Recommends and asked if I had ever heard of it. I said geez, dont you pay attention to the things you tke? The homeopathics we are taking are that brand. LOL Nice to know that after the one I am taking now to repair and rebuild, its once a day, they have a follow up enzyme to take with meals. I am not so frusterated with my VV anymore. I still dont understant how I can hurt there and not be ill anywhere else that shows outwardly, but I have come to understand how the body works and what causes it to break down and now I know how to begin to fix it. Hopefully it isnt too late to reverse the damage I've done. I'll be wearing jeans today BTW :O)Oh and on AK, I dont get very good results using my arm to test. Wendy taught me another method and it works so much better and I dont need someone else there to help. I love to feel the change in energy go thru my arm when i hold somehtng negtive and then switch to something positive or vice versa. Ill put some sugary substance in my hand (everyone is negative to sugar) and I will be negative, Ill then switch to some carrots or an apple and I can actually feel a weirdnes in my arm, the one that I am testing on, not the one holding the food. Sometimes the change is so severe that my entire arm will twitch. I didnt realize the first few times it did this that it was my shift in energy. Just thought it was a twitch like you get under your eye sometimes. But then realized it only happens when I am testing. Its pretty cool
CommentPA CINDY- I also live in the pittsburgh area and my gyn. doctor is affiliated with Magee. He is the ONLY one that was able to tell me what i had was vestibulitis. he also is the one who was going to do my vestibulectomy surgery that i cancelled. i'm not sure if he also does vulvodynia, but he is VERY compassionate and he knows that this IS a problem and 'not in our heads'. his name is doctor john barrett with womancare associates. i love him! :-) hope this helps. if you need any more info, contact me at the email address above.
Commenthere is a great site describing vulvar vestibulitis. it has some helpful tips and stuff too. this is the site that i first got started on before coming to THIS site. http://obgyn.uihc.uiowa.edu/patinfo/Vulvar/vestibulitis.htmhope this helps for anyone.
CommentI am new to this website and have found it very beneficial. I have been suffering for a while now (3 yrs) and never knew what it was. I went to two doctors. One said to try temovate cream (steriod). The other doctor wants to remove a small piece of skin he thinks is causing the pain. The procedure he explained is very simple and can be done in his office. I don't know what to do. Has anyone ever heard of temovate and does it work. I'm holdin off on the small surgical procedure for the time being. I am in so much pain lately. Also I heard about the oxalate diet with the calcium citrate. Is the calcium citrate sold over the counter and has it been said to work. Please let me know what you have heard. I need some advice from people who know what I am going through. Also how do I know if the doctors are diagnosing me right? Is there a special test that shows if you have vulvodynia or vestibulitis?Someone please write back soon I really need to know.Thanks.
CommentRozlynn- Thanks for the doctor's name and web site to try. That's my next move. Maybe I'll see you there! Mammi- Don't know anything about your cream. The way they diagnose Vulvar Vestibilties is with the Q-tip test. It's very simple. The gyno. simply takes a Q-tip and presses it against different areas of your vulvar. If he/she hits the spot where it's inflammed, you'll know right away because it hurts. I think 1st they try to treat it with a steroid cream , then injections, and last, surgery. (-That's what my doctor said.) Calcium citrate is sold over the counter many places. I buy mine at Walmart. It's called Citracal. It's a white bottle with "Citracal" in big blue letters and "Calcium Citrate" in smaller red letters. 2 tablets are 400 mg and you're suppose to take 1200 mg/day. That's what I gathered from reading all these posts. For a while there was chatter on this site about calcium citrate with magnesium but that didn't go too far and I can't say that I have read that on any other site except here. Vulvodynia is much more difficult to diagnose. I think they have to rule out many things to finally come to that conclusion. The way I see it, and this is just my way of thinking, the VV is on the outside and the vulvodynia is on the inside. The calcium citrate with a low oxalate diet is suppose to help. I've been on it for a while and my symptoms are much better, however I can't say it was from that. Maybe I just got lucky. You can download a list of foods that are low in oxalates on this web site http://www.branwen.com/rowan/oxalate.htmGood luck.
CommentThe magnesium in the Cal citrate is what helps your body to absorb the calcium and it also helps you go to the bathroom since most people get constipated when taking a calcium supplement. Magnesium is also a mineral we all need and alot of people lack. In one of my VPF newsletters it says you can take magnesium citrate and calcium citrate together if you cant find calcium citrate with mag, or you can just take magnesium citrate, OR of you cant handle citrate then you can take calcium carbonate. Ox-Absorb is calcium carbonate and it contains magnesium and a few other things. It binds with the oxalates in the food you are eating, you are supposed to take Ox Absorb with meals. You can take calcium citrate with mag and take Ox Absorb as well. Just an added benefit I guess. Go to the VPF website, it talks about the protocol www.vulvarpainfoundation.orgThey also are selling 2 cookbooks for the low oxalate diet. They are helpful when you have no idea what to eat or how to cook low oxalate meals. If you arent really sure if oxalates are your problem, maybe look into having your urine tested by Sci-Con, there should be info on the VPF site. Temovate was the very very first thing I was given (after the initial yeast creams that didnt work) and it helped with the redness for a few days, but then it all came right back and I was given 2 more steroid ointments in the year following, they did the same, took away some of the redness for a few days and then I would get worse. They work if your problem is dermatological, mos tof ours isnt though.I went to see a derm a few months ago on the advise of my GYN since my skin was peeling again and she tried to give me another one. She said my skin looks very healthy except for the redness ( i had stopped peeling by then) she also said that I could have been peeling because of an allergic reaction. I was taking oral Nizoral at that time. No more peeling since I quit using it.Just keep in mind, steroid oint.. are for short term use and your skin can actually become addicted to them. I know from experience. And that will make you so much worse.
CommentThank you Cindy for writing back. I am definitely going to try the low oxalate diet and the calcium pills you mentioned. If anyone has ever tried the steriod creams please let me know if it worked or not. Also my doctor mentioned shots that can help. I was wondering if anyone tried them and can tell me about that. Where they inject you and if it helped. I am trying to research and find out as much as I can about this and how to help myself so if anyone has any advice about what has worked for them please let me know. Also does anyone know a Dr. in the NY region along with Dr. Glazer that specializes in this problem. Thanks so much. I do believe that God will find a way for us. Keep praying!
CommentHey ladies, this is my first post but I've been reading your stories and accomplishments with great interest. I've had vestibulitis for over 2 years now and so many of your stories sound like my own. Times have gotten really hard for me and I can't find a doctor who even knows how to treat this. I suffer with pain only when there's pressure on my vestibule area. It's so hard because I look totally normal on the outside and I can still work and go to school. None of my friends know and my co-workers sure don't know about it. But I haven't been able to have any sex for more than two years and it's taking it's toll on me...I try not to get depressed. The only relief I've found is Estrace cream but it seems to only mask the problem. If I don't have sex or even touch the area I'm o.k. But I am married and I feel obligated to my husband and it feels so bad that I can't do anything more than foreplay...it's gotten to the point I am so afraid of pain and my husband's penis just scares me and I feel bad because I'm always pushing him away...needless to say we aren't intimate and haven't been since I got vestibulitis. I still crave sex but don't know what to do with my emotions....well I don't know anybody else who has vestibulitis except myself and part of my isolation is from that; and I've never thought of this before, but after suffering from vestibulitis for so long the thought is crossing my mind to be with a woman particularly a woman who also has vestibulitis. I've never been with a woman before and I know for certain I wouldn't even be thinking about this if I never got vvs but I just want to have an experience with a woman who understands me and I understand them. I cannot have anything penetrating me at all, but I can still have clitoral stimulation and get pleasure from that but I need to have slow gentle, and I stress GENTLE, lovemaking with someone who vestibulitis and therefore will not be interested in my husband because I'm NOT interested in another man...Sorry if this is totally blunt and honest but, in case anyone feels the same I do please let me know. This is probably a long shot but I'm just hoping to be with someone who also has this and we can be there for each other. In no way am I looking for a one night stand! I mostly want to talk and share our fears, anger, sadness, everything emotionally that has to do with vestibulitis together. I'm so tired of dealing with this alone. Even if there's anybody who would just love to talk to me my email address is above because I'd love to just know someone who is dealing with this... I hope I don't get totally misjudged about this...If anything please just let me know having vvs isn't the end of the world because I sure feel like it is and all I'm doing is trying to cope with this and maybe help someone else cope with this too.
CommentThis is one of the first times I have ever had a name for what I feel. I started at the NVA web site and then decided to look more outside of it. Thanks for you work.
CommentTo The Lady Who Is Considering A Lesbian Affair: I am speaking as a married person not as a man. If you are not happy with your marriage because of the demands or obligations for sex and are truly considering another sex partner please end your marriage with dignity and respect before continuing with your sexual agenda. I am not saying you are not entitled or deserving of happiness and pleasure but end your relationship with your spouse before getting involved with someone else. There are several reasons I believe in doing this, as I have told my wife if either of us were ever that certain that we no longer wanted to stay married or wanted to be with someone else we should have the love and respect to end our marriage the right way. There is also the issue of children and wanting to set an example of ending the marriage with some degree of caring for them as well as eachother. Finally even if you are considering a lesbian affair there are sexually transmitted diseases which could impact you and if you stay married they might eventually become a cause for concern on the part of your husband even if you no longer have sex with him. I am not suggesting you have any s.t.d. now or that you would necessarily be with someone who does but can you guarantee it? And if not, why bring that into your marriage. Please, if you feel so strongly about experimenting sexually do not do so while you are married. I know many women whose husbands have been unfaithful and in talking to them I say end the marriage, because once one of you cheat the marriage and trust is really over. If there is to be forgiveness and a rebuilding of love and trust do so with a fresh start. Get married again to the same person but this time honor the marriage vows and eachother. Go on with your life and be as happy as you can but do it the right way. Best of luck in your decision and future.
CommentIf anyone is having dire pain they should try accupuncture. While accupuncture has not made me 100% better it definitly calms down a flare up. My practicioner practices "trigger point" acupuncture which might be hard to find outside of the NYC area. She is wonderful and understanding. Tell me if anyone is interested in her name. She is in NYC.To the women who wants to have an affair:Sometimes too, I think "well if I just had the right sexual partner I would get greater sexual satisfaction with this condition." But then the reality part of my brain sinks in and says I just have to be more aggessive in finding treatments to make it get better. My husband is a pretty good lover and we have adapted pretty well by being creative. I miss sex, but I make it my motivation to try new things. I love my husband too much to give up all we have together to try a sexual experience that might not be all that I hoped it would be.If accupuncture isn't your thing, you can try going on one of the antidepressants. Many people get relief from them. Many people get relief from the low oxilate diet and calcium citrate, but I was not one of them. There are more options you can explore.
CommentCANDI-
CommentCANDI- whoops! sorry i hit the tab button! don't keep me waiting any longer!! :-) i'm dying to hear if your fungi-fuge worked!!! ah! please post as soon as you get home from your QX lady!!! yeah! i'm hoping it works for you! and oh, i'm taking your way of life today by going to work 'au naturel'... i thought i'd give the 'no panties' thing a try. i feel kinda funny...i feel like everyone here at work can see through my pants and tell i'm not wearing any panties! feels sexy though! :-) I'll be back to check again for your QX 'report'. take care!
CommentSummer, or at least spring is finally here and I, like Rozlynn have been going outside without panties!! I even took my daughter to get her hair cut this morning. My mom came with me and I was telling her about Candi and her suggestion! I guess it does take some getting used to but it feels so much better, especially with a long skirt and not with pants! I can't say I'm actually feeling sexy ( 7 months pregnant, raw feeling vulva!) but I was happy to do something outside of my house that wasn't too painful.I've also been going to acunpuncture and although the pain is still there, it seems to help. I seem to be getting itchy again though... seeing my doctor next tuesday. I've also made an appointment, in 2 weeks, with an homeopath, naturopath who says she specializes in women's health... I'll see.
CommentLISA-I tried that "muscle testing" at a naturopath and as it was happening I kept thinking this is the most ridiculous thing. If you think about it logically, it can't possibly work, but was too embarrassed to say anything. The next day I was so upset I called and said I wanted my money back. I had to threaten to take her to sm. claims court. I did get my money back, but had to agree not to tell people her name and what happened. To me that means SCAM!!!
CommentAbout the muscle testing, it uses your bodies energy. So if you think abou tit LOGICALLY as you say, then you should know that our bodies are made up of energy. So why would it not work? Why? Because the whole time you were thinking negatively when she was doing it. NEgative thinking about anything can make that thing have an opposite reaction. Take a cancer patient for instance. I used to work in a pharmacy (funny now, since I stay away from chemical drugs), I met this deaf man who was always so sweet and funny and he was teaching me to sign so that we could communicate in other ways than writing notes back and forth and he went for some blood work, he was pretty old, and he found out he had cancer. He died after 2 months. The negative feelings he had towards the cancer in his body made him worse. We also get more pain when we are stressed, why? Because of negative thinking. AK is not for everyone. Esecially if you dont open your mind to what your body can do. Our bodies are more than flesh and bone. I laughed at first when I was learning it. I can admit that. I had to tell myself that I knew it would work if I opened myself to it because Wendy is still well and she tests on EVERYTHING. SO once I opened myself to it and took it seriously, I got results. I have never had someone else test me though.I wouldnt feel comfortable with that. I learned from Wendy and did have hubby test me at first, but I got results when I did it on my own. I find it fascinating and alot of fun. One thing Wendy taught me was that going to someone to have this done is really not what you want to do because alot of these people are just there to try to sell you stuff. SO sure maybe this lady WAS scamming you. But all in all muscle testing will work if YOU allow it to. I would be curious to have Frank learn and try it. :O)Hes the skeptic but I know he would allow himself to be open to it. Hubby wasnt open to it at first either. He thinks things like that are strange. But when I tested him on sugar and his nasty cigarettes and he went negative, he turned white. It was so funny. ROZ-WEEEELLLLLLL, I am home now. My nasty bacteria that I took the bacteria-fuge for is gone!!!!!!!!!Fungi were better, but still a problem. BUT they werent as bad as before. SO we ordered another bottle of Fungi-Fuge. I knew that Id need another. I listen to my little voice. SO I am done with bacteria and taking another fungi then I go back in a month to see if its better or gone. Some of the fungi that came up last time were gone though. There were 5 this time only. They were listed as systemic so we couldnt tell if they are whats causing my VV. Also Emotional state came up as a big factor to me too. So we let the QX choose some flower essences and she has a little kit and mixed some for me. She used some for her shyness. She said she needs to be more outgoing and she said after a week she found herself talking to this lady like she knew her forever. I wanted to try something other than an antidepressant. My E vitamin deficiency was gone YEA!!! My C was still there, but I havent worked on that at all either. I take NO C. And my U was better, but needs work still. You get that from cabbage and saurkraut. GROSS! I still have heavy metal toxins, but I havent detoxed for that yet. I do only one or 2 things at a time. So, all in all, the numbers were much better, and I have to do another bottle of Fungi-Fuge. I am still not done with the one. Have about a week left. But some of the fungi from before were GONE. Went to the health food store by my moms since ours are all crappy and looked around forever. OH and my fatyy acids were still a factor and I havent worked on that yet either so that was not surprising. I was concentrating on my vit E, bacteria and fungus. SO now I go to step 2. Take more fungi fuge and start on my ameba fuge for the parasites. You should only do 2 fuges at a time. Never take a ton of things at once or you will be overloading yourself. I'm happy with my results. I bought some Hemp Seed Oil to take as my fatty acid. She recommended that. Wonder if I would pass a drug test. I know its a different plant than the one you smoke LOL but still, its not that different. You fail a drug test from poppy seeds, so can you fail from taking hemp seed oil?HmmmmmmmmmmmI thought Su who posts sometimes had her QX test yesterday, but she is having it today. Ill let you know how it went.Well we are gonna get a nasty Florida storm so I gotta shut down. I dont trust in those surge protectors no matter how much they cost. SO are you ready to have the QX done yet? LOLI love going, and Marie is so much fun to talk to about stuff. IT was funny cause she ran the initial test that shows your high reactivities and she didnt show me the screen and when the results were there, she asked me what my gut told me. I said my gut told me that I still had some fungus, but the bacteria was gone and the vitamins were E ok and C and U were not and that my emotional things were still there but that wont go away until i learn to relax. And I was right about my results. She also asked me what I thought the positives were to my condition. I actually gave her an answer and she was amazed, because she said everyone else that has come to her for a medical condition has said absolutely nothing is positive about their problems. Anyhow, I hear the thunder. If you want to have the QX test done I can help you find someone. Its really fun.
CommentMammi--I have had some success with the steroid creams (I used Valisone daily for 6 weeks after being diagnosed.) But Candi is right about the potential for skin getting "addicted" to it--you really need to sort of wean off of them. I think you can get a rebound effect where your symptoms can actually worsen if you've been on them a while and then just quit cold turkey (so I've read anyway). Also, long-term use can result in thinning of the skin so it tears really easily, and it's irreversible. I don't know about the injections. Personnally, I'm afraid of any trauma to the area worsening the situation.Also, has anyone heard of using Crisco applied just to the labia as a moisturizer? I went in to the doctor the other day b/c of itching and he suggested it as something to think about. I'm leery of trying it.
CommentLogically, putting a bottle in your hand and having someone push down on it, your body can't possibly know what is in that bottle. I can't believe people with any smarts at all can think it would work. Obviously, the doctor I went to knew it doesn't work that's why she didn't try to prove her case and court and paid me to keep my mouth shut.
CommentTo Loren: You know how Candi and I feel regarding the Applied Kineseology. I was skeptical when I first heard of it and when my friend who is a chiropractor told me it was just a money maker I felt justified. Honestly people have gotten positive results from it. That leaves us with either believing there is something to it or that it's a scam. Problem is No one in a position of authority will investigate and force a determination based on science. Can this thing be proven beyond a doubt with scientific testing? My Mom went to a chiropractor a couple of years ago and she is pretty open minded, he did the test and advised her to purchase only his recommended brand of supplements. I got upset because from my life experience I felt it was phoney and I think I know supplements and him pushing his own label pissed me off. Still I have to stay open minded and allow for things that don't make sense to me. Vulvodynia does not make sense to me, but it is for real. Maybe someday this testing will be proved one way or the other. When and if that happens either the folks who have been tested and complied will be proven right or it will be proven that by some coincidence they got relief from their symptoms. Maybe it varies by some power beyond my understanding from person to person? I want to know for sure, and I want to know for sure what the hell caused my wife and all you ladies to suffer as you have. I want to know why with all our brilliant scientific minds and educated doctors, no one can determine what is going on, what is causing this and what will treat it. So yes, I don't see the science in holding a supplement near a person to determine deficiency but that doesn't mean it is fake. I want to grow in acceptance and understanding not just in waste size as I'm growing older. How or when will we get all the answers we want, need and deserve? Hey Candi hope that storm leaves you alone, we're not done yet. Much work still to do!
CommentJust wanted to add this one bit of thought. If applied kinesiology was ever tested in a scientific atmosphere they would not use human force applied to the test subject. Too much opportunity for varience for resistance and let's not forget the power of suggestion. They would probably use either weights or set resistance machines, with a constant and precise measurable force against the subject. What are they waiting for to clear this matter up once and for all? Maybe they are stumped by vulvodynia but this other thing should be simple to resolve.
CommentCANDI- What took you so long??!! :-) i've been anxiously awaiting your results for the fungi-fuge. so, you said your bacteria numbers were down but your fungus numbers were still up. does the fungi-fuge take care of bacteria AND fungus? i'm going to order it. i'm so happy that your tests went well! it sounds really fun. i did look on that link you sent to dominique and the closest QX person to me is either in south central ohio or new york. :-( Thank you so much for replying in so much detail. that was great to read... i went without the panties today and i'm feeling really good. i also went to happy hour after work and then to the hospital to see my sister's new baby... i think i may get alittle frisky with the hubby tonight! :-) thanks again for your QX report!! STEPHANIE- i did hear of using Crisco for a vaginal lubricant instead of KY jelly. i haven't tried it. i'm afraid to put anything near or in my vagina. i think if i put that in my vagina, i'll get an infection from it. my vagina reacts to ANY sort of foreign object or fragrance or substance. i get infections from almost anything. so, i haven't tried any of the oils listed on this site, nor the crisco. please post if it works for you. take care everyone.
Comment"I can't believe people with any smarts at all can think it would work. " So your calling me stupid? Well I have you know I graduated college with honors thank you very much.I cant believe that anyone with half a brain can't consider things other than what your doctor say are true. Obviously he hasn't made you well yet. I am getting well though so I guess my I'm pretty smart for believing afterall huh?Just because you can't expand your brain cells past a few pills and creams from your doctor doesn't mean alternative things don't work. Forms of muscle testing have been around for hundreds of years. AK itself hasn't been around that long, but Native Americans have been using forms of this for hundreds of years. Until you can look beyond pills and having your skin cut out, you probably won't get well. But that's just the road you will have to follow. I don't live your life. I'm sure th eperson who invented television was called stupid at first too and what about the person who said it was possible to go to the moon. Thank God there are people like me out there ready to open our minds and move forward. Otherwise We'd all still be reading by the light of the moon.
CommentIve never been to a kinesiologist so i have never had to worry about being scammed. I do it myself . Oh but I have no smarts so I probably am not doing it right LOLI don't use someone elses force to test me. I do it all on my own.
CommentFor goodness sake - I'm going elsewhere. It seems that if I want to read the positive stuff on this site, I have to wade through all the little bitch fights first. Some people seem to think they're allowed to make nasty comments because they contribute lots of good stuff. Whether it's in response to someone else or not, why subject everyone else to it? All the best of luck with your healing ladies.
CommentThanks StephanieM for responding to my question. You said it worked for a little while. About how long? Did the steriod cream make all the pain go away. I am starting the low oxalate diet. Some women say it helped along with the calcium citrate. Did it help any of you? If so, how long before it usually starts to work. Also does anybody know of a vulval specialist in th NYC or long island area. I don't feel the two doctors I have been to are helping. Right now I am just relying on God to get me through this and find a way. Trust in God Ladies and he will make miracles in your life.
CommentThanks StephanieM for responding to my question. You said it worked for a little while. About how long? Did the steriod cream make all the pain go away. I am starting the low oxalate diet. Some women say it helped along with the calcium citrate. Did it help any of you? If so, how long before it usually starts to work. Also does anybody know of a vulval specialist in th NYC or long island area. I don't feel the two doctors I have been to are helping. Right now I am just relying on God to get me through this and find a way. Trust in God Ladies and he will make miracles in your life.
Commentvery interesting!!good job!<a href="http://www.dominiofree.net/click.htm"> http://www.dominiofree.net/click.htm </a>
CommentWell Gia if you had someone calling you stupid and the things that were making you well called BS and crap you would have somehting to say about it too, but since its not you then you dont have to deal with that. Funny how even you wanted to say somehting about me taking up for myself, what about the ladies who want to call me names?Ya know what, stick around, because as far as im concerned, screw all of you! I wont post here again. PERIOD!Now the smartasses here can go and throw their worthless comments to someone else. I wont be calld stupid from anyone and continue to take all the negative comments from the girs here. Noone should have to deal with that and I wont. They contribute NOTHING here except negative comments on things that other people are doing, all they contribute is their comments about us who are doing things being stupid etc.So as far as im concerned, i dont feel the need to share my successes here. ROZ-if you need me you can write me anytime at cndlaur@tampabay.rr.comI wont leave ya hanging. As far as everyone else, why should i have to sit and smile quietly when someone wants to call me stupid. You wouldnt either if it was you, but its ot so its easy to say you dont want to read it. DO you think I want to read someone calling my path BS or crap or being called stupid?No I dont so I will NEVER post here or read this site again. You all can go right ahead and take your drugs that havent worked for years now, so why would they now? And have your vulvas cut etc.I dont need the stress.My QX lady asked me yesterday what was positive about my condition and i told her that I believed i got this in order to make myself well so that i could help others achieve the same (as I sat there in my JEANS that I havent worn since last MAY). But you get tired of trying to help people and get slammed for it. Ill move elsewhere where people actually have open minds and WANT to get well.See ya!FRANK- Maybe your wife was right in not wanting to post here. Heaven forbid she ever give advise that worked for her. Shed get shit for it from someone here for sure.
CommentWOW-I think most of the negativity on this website is coming from Candi. Every time I go into the guest book she is having a fight with someone. She thinks she is queen of the website and only SHE can say what to be negative and what to be positive about. She puts down treatments left and right. All I know is if I sat back and people tried this treatment and got scammed like I did and I didn't say anything, I would feel terrible. I am very open about medical and alternative treatments. She is the one who keeps bashing traditional treatments. Who is she to say all I have tried are traditional treatments and nothing has worked. She knows nothing about me. And for the record, no one on this website is stupid including Candi. There seems to be a group of very intelligent women. My comment was that I was suprised that smart people could fall for such a scam.
CommentTo All: Let's face it you ladies are in pain and different levels of discomoft and emotional stress, very difficult to not lose your patience once in a while. I don't want to see Candi or anyone else get insulted and decide to leave. You've all had your say and you are all entitled to your opinions. It's not just the applied kinesiology that people disagree with. Think back, surgery has given some relief while others have more problems than before. Steroid creams have been great for some of you and worthless for others. So there is a difference of opinion regarding this other treatment or testing. Why not say it doesn't make sense to you without considering those who believe in it to be morons? I admit that was the first thing that came to my mind but now I'm more open to the posibility that there may be something to it. Either way this should be a place where we exchange ideas openly but not be judged harshly. You think Candi is too tough, tell her and keep posting. Maybe she is having a hell of a time and isn't in the best of moods. We don't have all the answers on vulvodynia and we don't have all the answers on this treatment either. There are new treatments and diagnosis for diseases coming out all the time, agree to disagree and hang in there. By the way I read several guestbooks ago of some women using crisco as a lubricant or barrier. I guess it worked for them but I don't know if it's agood idea. We cook with it and it should be safe but is it safe to use internally? Does it contain harmful chemicals? Please clam down and continue to exchange, more and more women are realizing they have symptoms of vulvodynia and this should be a open helpful place for them. Don't scare them away with all the negative stuff. please. Everyone chill out.
CommentI have been reading the books for a few years now and have not contributed at all cause I have not had success with any treatments and live far from decent doctors. I decided to post now cause from reading the other books it seems like when a woman writes about a treatment that is working the women who are not getting better days want to say that their ideas are wrong and dumb and far out and really cut them down. These are the women we need posting here. If you all put these women who are feeling better down then they are going to leave and then that is not going to help the rest of us who want to get well and try what they are trying. I would get angry and defend myself like Candy did too if you all were saying the things about me that have been said about her here and the other women who have left because of this as well. I have not seen Candy put down the other treatments, only give advise based on the fact that she has tried all of these and what has happened to her from these drugs. Didn't she say she worked in a pharmacy for a long time and would that not give her more insight into drugs than the rest of us have? She seems to know alot about this disease and she knows other women who feel better so why say such things about her ideas when they look like they are working? She has been around a lot longer than those of you saying these things to her so I think that would make her know more about what to try and what not too. I bought the book that she recommended and am reading it and it does sound like she is on to something. If you all you newer women keep running off the older women here who are feeling better then other people can't use their ideas and get advise. I would not have stayed here either if I was getting personal bashings about me. Does anyone know how to get ahold of her or that other lady who feels better? E-mail me above.
CommentSomeone used Crisco here in the last guestbook and got a bad rash from it. Forget who she was.
CommentI agree with Loren. Candi seems to have so much anger when people don't agree with what she says. If someone wants to help people but doesn't agree with her she shouldn't get so angry. We are all trying to help and be helped.
CommentI went to the website Rozlynn listed on April 29th. On that web site, I read that high oxalates cause you to feel the need to urinate often and suddenly. So, unless my vulvodynia is directly/indirectly related to urinary system problems, then oxalates have really nothing to do with my pain. (I pretty much know it is hormonal with me.) And so, all this time I have been cutting out all those delicious high oxalates and not getting any positive results, and now I see that the oxalates had nothing to do with my problem. Can someone convince me that I haven't been wasting my time watching my oxalate intake? I didn't even lose any weight either! Bummer!
CommentPost Surgery my physician has also recommended Crisco as a lubricant or barrier. According to my physician it is natural. He also recommends Olive Oil as a lubricant. So far I have used Olive Oil as a lubricant and Crisco as a barrier with no problems. I swim a lot and have been also been suffering from UTIs which have caused some irritation but with the use of Crisco I have been able to eliminate the irritation from urine and chlorine. Also Vitamin E helped Pre Surgery. Good Luck to All! Keep Positive! All ideas are worth listening to what works for one might not work for others but IT MIGHT.
CommentI've just started reading this guestbook and does seem that Candi is being unnecessarily nasty. She seems like a ticking time bomb. The minute someone says something she doesn't like, she'll just blow up again. I've only just started dealing with vv and reading this guestbook and have learned HEAPS from her posts and experiences, I just wish that was all she posted here. No-one is running her or anyone else off this site. We're just saying that you have to conduct yourself in a responsible manner and that means no vindictive, vitriolic diatribes. If you're confident in yourself and your path, then why would you need to react in the first place? I woudl get upset if someone criticised me, but why not be the adult one and say let's agree to disagree and then move on.
CommentI don't bother to post on here anymore b/c either no one responds, or I get a nasty response from someone like Candi. I'll just share info from other women with Vulvodynia who I have become friends with from this site.
CommentTo All: Just wanted to make a final comment regarding Candi and hurt feelings and giving up on this site. I've learned a few things over the last couple of years posting here and talking to some women I know who are going through divorce. I always assumed women who were friendly with one another could discuss anything and be supportive, I was wrong. Many of the ladies who post here have said none of their friends want to hear their vulvodynia problems. The ladies I know who are going through divorce run into the same thing. Maybe it gets to be too much to hear over and over, I don't know. Maybe there is that fear of hey I might get vulvodynia or there's nothing wrong with my marriage I don't want any bad vibes? Whatever the reason I'm at ease discussing vulvodynia and divorce and relationships. That's why I am writing now. Keeping me out of this all together. You ladies are related. You share the same unpleasant fate and illness and In my opinion, you should make all attempts to stay close and friendly with one another. Argue, insult, respond but make up and like soldiers brought together to fight a common enemy never give up. Think about it, please!
CommentLadies I have been dwelled and living every day lately consumed with what can I do to get rid of this problem. I have been reading this site and trying to figure out answers to this condition and how to help myself. I truly believe that we must believe and trust in God. If you surrender yourself to him and have faith in his words that he WILL heal us, he will. We need to start saying more positive things and say that we will be healed and truly believe it and it will come to pass. If we say and believe that this problem can't and won't get better than that will eventually happen. So stay strong and ask God into yourlives and ask him to take control of this situation and in his time and way it will happen. But you must truly believe. God promises us so many things. He does not lie and cannot lie. Therefore, take him up on his offer and he will bless your life. If you have faith and trust in the lord with all of your heart, even when it is hard to do, he will make miracles in your life. I have seen many miracles he has passed in my life and in the lives of others around me. Trust him and ask him into your life and your healing will begin. Read the passages in the bible. He promises to heal us. He promised that he will provide everything we need in life if we ask. I cannot continue a depressed life where I am consumed by this problem everyday. I am going ask God to take care of this for me and carry me through this and find a way. Ladies I promise you if you pray adn truly believe that God has promised us a healthy and happy life it will come to pass. Your lives will change for the better and you can forever have the almighty and all loving father with you. I ask you to try this and you will see what I am talking about. May God bless you and be with you always.
CommentOh my gosh. i missed a day on this site only to come back and find a warpath of destruction! this is truly ridiculous. everyone needs to quit picking on CANDI and everyone else. we are all posting on here to share our ideas and share our successes and our failures. we NEED each other on this site. we need everyone's ideas here... i benefited from some ideas here and there are other ideas i tried that i did not benefit from. that is the beauty of all of our ideas. without everyone here, none of us would be healing, none of us would know what to try or what not to try. it seems as though some things work for some people and some things do not work for others. compare it to all the foods we eat. i hate seafood. if it swims or lives in water, i won't eat it. now, i'm sure there are alot of you ladies here that love seafood. i'm not going to say you're wrong for eating fish when i hate it. that's my opinion, and that's what this site is all about! opinions!!! and we need those opinions from everyone here! our doctor's are only human. they don't know or have the answers to everything. but with the help of everyone else here, we can all gather our ideas and help one another. the bickering needs to stop...this site is to help each other... and since i've been to this site, through CANDI's suggestions and some other ladies' suggestions, i am feeling so much better. i would hate to loose important opinions and suggestions from anyone, including CANDI. So, can't we all just please get along? this site is here to help people, not hurt people...
CommentHi all. Haven't been here in a real long time. Have had vulvodynia for nearly 30 years. I'm nearly symptom free now but not cured. I'll always have this but I feel like I've learned how to manage my particular case. Please don't argue or respond to those who want to. We need to support each other here. This is an information portal that is irreplaceable for those who seek answers to their vulvar problems. I've tried many different things for my problem and I've relied on this site for ideas often. I have found that if I manage my yeast, I can manage my vulvodynia. The weird combo of daily yoga and a very low carb diet with lots of veggies and lean meats helps. Stress is one of the worst culprits in creating yeast in my system. I quit drinking all alcoholic beverages 2 years ago and I believe that helped a lot. Boric acid inserts that I make myself with clear gelcaps has been my savior in the area of symptomatic relief. I also eat some plain yogurt every day. I have to avoid sugar, or I have an outbreak for sure. I have seen so many doctors and practictioners but I don't even have one right now. It really doesn't matter at all. I haven't found one yet who understood my problem as well as I do. That's all for now. N
CommentHi all. Haven't been here in a real long time. Have had vulvodynia for nearly 30 years. I'm nearly symptom free now but not cured. I'll always have this but I feel like I've learned how to manage my particular case. Please don't argue or respond to those who want to. We need to support each other here. This is an information portal that is irreplaceable for those who seek answers to their vulvar problems. I've tried many different things for my problem and I've relied on this site for ideas often. I have found that if I manage my yeast, I can manage my vulvodynia. The weird combo of daily yoga and a very low carb diet with lots of veggies and lean meats helps. Stress is one of the worst culprits in creating yeast in my system. I quit drinking all alcoholic beverages 2 years ago and I believe that helped a lot. Boric acid inserts that I make myself with clear gelcaps has been my savior in the area of symptomatic relief. I also eat some plain yogurt every day. I have to avoid sugar, or I have an outbreak for sure. I have seen so many doctors and practictioners but I don't even have one right now. It really doesn't matter at all. I haven't found one yet who understood my problem as well as I do. That's all for now. N
CommentTo the woman who said she read up on the website i posted on april 29th... i'll give you some info that i've been dealing with in regards to high oxalates vs. urinary system problems... i had a cysto done about a week ago... the doctor said i may be suffering from mild intersistial cystitis (sp?) i tried to follow the low ox diet but it doesn't seem to work for me. and like you, i love all the delicious high oxalates that we're not supposed to eat. but i can tell you this. i have cut out sugars, and that seems to help with the burning associated with urinating. i used to eat alot of chocolate, candy, kool-aid and fruit. there are natural sugars in fruit. basically, that's all i ate. noticing now, having cut out the sugars, i don't have as much burning while urinating. i am however taking the calcium citrate tablets to help stabalize the oxalate crystals in the urine. that seems to help as well. also, the more water i drink, the less burning i have. i can't convince you that following the low ox diet was/is wasting your time...as it seems the diet helps many women on this site. for me it really didn't help...just cutting out sugars helped significantly as well as all the other supplements i've been taking. also, i think that the burning urine was/is making my vestibulitis flare up. i think it's either my urine or stress/nerves. so, everyone is different in their healing and their levels of pain. i can only tell you what has worked for me. hope this helps.
CommentRoslynn- Any thoughts on why urinating makes me feel better? I don't have any urination problems, but I have noticed that my vulvodynia feels better right afterwards. Any idea why?
Commentcandi could have answered the question of oxalates and urinating trouble cuz she knows a ton about oxalates but shes not gonna post here anymore cuz some people on here had nothing nice to say about her ideas and pissed her off so hopefully someone else will be able to answer the problems we have now. thanks alot for being mean to the one person who actually had answers to our questions and used her experience to tell us and always answered our questions. good going!
CommentI totally agree that Candi contributed 97% of the information on this site. She helped me and countless other women to better health. And yes, people were critical of some of her treatments. But I always thought her responses to those criticisms were a 100 hundred times heavier. She would just SLAM people down. Even once when someone WASN'T criticising her she just jumped to conclusions and off she went. I think when you act like that on a guestbook (or anywhere), people are going to get sick of it eventually. If not now, then sometime later. As a new reader, I was gobsmacked by that. Maybe I read it wrong? Who knows? That's the problem with email/internet. You have to be really careful with what you say. Maybe it will motivate the rest of us to be more proactive.
Commentbut see now i dont have someone to answer my questions. someone whose a lot better and i woulda got sick of people putting me down all the time too and been so mad at that too and so would you or everyone else to if i was better and noone was listing and saying things about how i got better but you cant feel it unless its you so i woulda done the same thing and does she go anywhere else so i can ask her questions or how to reach her? noones even giving any advise here now in a few days.
CommentI got Candy's email address from a past book since noone would respond when I asked and she posts on a few other sites so to the lady above, if you want to know how to reach her, you can write to me at the above email address and I will share that information with you. And I do agree, I would have gotten really tired of people putting down how I was getting well and have probably gotten really upset too. But noone was walking in her shoes when she was trying so hard to help and give advise and answer questions everyday and then have women say such things about her treatments. If anyone wants advise from her you can write me and I will ask her permission to give you her address.
CommentE-mail address for Candi: cndlaur@tampabay.rr.com
Commentwell, i was going to say the same thing that Jesse said. I too, have Candi's email address...but someone already publicly posted it. Um...to the woman who asked me why urinating makes her feel better...i don't know the answer to that. maybe your condition has to do with bacteria and yeast. when you urinate, maybe some of that yeast is cleansed away from your vulva, therefore making the symptoms better for a short period of time? i'm not sure. did you check into seeing a urologist? that's what i'm doing. i'm trying to solve my vestibulitis with the help of my gyn and the urologist. together, maybe they can make sense from this. also, to the anonymous person who says that noone ever answers her postings... that may be because no one has an answer for your question. there have been many posts that i've read that i can not relate to. i don't think anyone would purposly ignore you on this site when we're all here to help one another in the first place. becoming more involved in this site since i've been feeling so much better, i will try to give any info and answer as many postings as i can. but my condition differs from many others on this site. if i have the knowledge to respond, i will. take care.
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CommentCandi enclosed her e-mail address in a post dated May 1st. I think it was her last.
CommentI have had 3 vestibulectomies. And because of all the surguries I have so much scar tissue that having sex is out of the question due to pain and tearing. I have heard that it works for some people. Make sure you keep the skin stretched out so the scar tissue won't just keep shrinking the opening. Results from that in combo with no hormomes is my problem and has been for 17 years. With that said, I really need some feed back from all you out there. I have to use dilators to stretch the opening and I use astroglide but it is not enough lubrication. Short of petroleum jelly, does anyone have success stories on good lubrication? The last time I used the dilator it pulled off the skin from inside of me. I am desperate to find an alternative lubricaion so I can continue my therapy. I haven't been able to have sex in a year and and half. My husband is a saint!!!!! Any suggestions appreciated.
CommentTo Liz Mack: I've been reading up on vaginal dialators and several sites recommend using a product called Sylk. Read more at www.sylk.com, sounds like it may be a very good product safe enough to be used in an applicator if necessary. Best of luck.
CommentI have been suffering for over four years. I have been to numerous Dr.s and no one has ever told me about this conditon. I have had painful intercourse since I became pregnant. My partner and I did not have intercourse for three years. We have made attempts about four times in the last year. It feels like I am being cut with razors. This is unbearable to me. My partner can not stand hurting me and so we are both unsatisfied. He has been very patient. I am so sad. I am going to begin taking calcium citrate but I need a Dr. who knows what is wrong with me. I have had more yeast infections in the last four years than in the 22 years prior to getting pregnant. I do not have any desire any more because who would if all it meant was being cut by razors. I am a fair skinned blond and I have read this is common with us. I don't know what to do. I want to be normal again. I prayed last night because I really can not go on like this. I found out about this condition today. I believe it is an answer to my prayer so I am reaching out for help. I need hope.Kay
CommentI am a medium skinned brunette who rarely ever had a yeast infection in my life. But I have this. Good luck.
CommentTo Liz Mack- Try K-Y Jelly. It is sold in grocery stores and pharmacies. I buy mine at Target and Walmart in the sanitary napkin sections. I keep a tube in each bathroom and after I urinate, I wipe myself with wet toilet paper and then I just smear some K-Y Jelly on. It's water soluable and odorless. And a life saver for me. It says it's a "personal lubricant" on the tube. Try it!
CommentLIZ- there has been some talk about using Crisco as a 'natural' lubricant. i asked for some info/insight about it and some responded with good coments and others had bad things to say about the Crisco. i'm afraid to use it...i'm afraid if i use it, i'll get an infection, as usual. KAY- there is hope, please don't give up. there are several women here on this site who are finding relief from many products. take the time to read through some past guest books and see what you can come up with. i have posted on this guestbook of all the vitamins and supplements i've been taking which have been making me feel better. And like you and Dominique i believe, my vestibulitis also came as an onset to becoming pregnant. it's a horrible cycle of infections and raging pregnancy hormones... also, when i became pregnant, the stress was overwhelming. i think my condition is a result of stress and infections all thrown into one. i wish you luck in finding a good doctor who can help you. there are postings on here of many doctors that women recommend. you can post your area and maybe someone will respond with a doctor in that area. things will get easier. i won't say better, because there is no known cure for this. but follow some of the advice on this site like i did, and many others, and maybe you'll see that things can become easier for you. i too, became very depressed by not being able to satisfy my husband. very depressed. luckily, he is so understanding. but it still frustrates me. i understand your frustration. don't give up. if you need support, please email me at the address above. i'd be glad to give you a run through of all the supplements and vitamins i've been taking and all the things that did/didn't work for me. but please keep in mind that we are all differnt and we are all suffering from different levels of pain. some things that work for some women, may not work for others. keep an open mind and be willing to try things, i guess. take care and don't give up. find comfort in the fact that your partner has been patient with you. that alone makes it much easier. at first my husband didn't understand and became very angry with me for not wanting any sexual contact. i started to take him to my doctor's appts. with me and he then was able to understand my pain and how this affects us emotionally as well. things will ease for you. my doctor says this condition comes and goes with no set time limit for anyone. the onset of this condition is unknown also. like i said, if you'd like to chat, email me at the address above. take care
CommentTo Kay: Try to be strong and certainly stay hopeful. If you just mention you home state either here or at the National Vulvodynia Foundation you should be able to find a specialist. Regarding the frequent yeast infections, have you read or tried any of the anti yeast diets? You sound like a woman with vulvodynia but there is hope to reduce some of your symptoms.The diet is a good start to reducing the occurance of yeast. Simple things like cotton underwear might help along with avioding anything but water to wash your vaginal area. Make sure you stay properly hydrated throughout the day. Many here believe that although they treat a yeast or bacterial infection they are not totally ridding their body of it. Make a list of questions to ask your next gyn or specialist. If they take a swab sample ask what exactly they are checking for, or suggest they do so. This way you will know what you are treating. Boric acids capsules or suppositories which can be made up at a compounding pharmacy might be useful in getting the vagina into a healthy ph balance. Take some time and read as many of the past guestbooks as you can. You will get a history lesson . Remember just because all your past doctors have not discovered what is bothering does not mean it does not exist. My wife has been suffering with yeast and urinary tract infections since we were married over twenty years ago, she has other symptoms such as burning, itching and slight tearing of the skin but only in the past two or three years. I have asked many questions and learned much on this subject that is why I am responding to your post. If you are ill at ease with that just say the word and I won't answer any of your future posts.
CommentPA CINDY- were you able to contact Dr. Barrett at Magee Womancare Associates? I've been thinking about you wondering if he is able to help you. If you need the phone number, please let me know. good luck!
CommentHi Liz: I'm sorry you've had the surgery 3 times without success. I just sent away for some samples of a lubricant called Eros Bodyglide. I've tried Astroglide and Ky jelly and still can't have sex with my husband b/c the pain is excruciating. We've been married for 23 yrs. and this nightmare started about a month after we got married. I've gotten rid of the daily 24/7 burning, but wish we had a sex life.I've only had one yeast infection that I know of and diet doesn't seem to increase my pain. Estrace cream helps me a lot, thank God. I hope you find a good lubricant.
CommentRozlynn- Thanks for thinking about me! I haven't had a chance to contact Dr. Barnett's office yet. With the school year coming to an end, I'm busy with all my kids' activities. Once summer vacation starts, then I'll go that route. Thanks again. Hey, if you have his phone number handy...I'll be watching! Thanks!
CommentPA CINDY- please email me at the address above for the doctor's phone number. i don't think it's appropriate to list it on this website, ,plus there are several offices that he practices at in the greater pittsburgh area. we'll find out which one is best and closest to you! talk to you soon!
CommentThis is a GREAT article regarding vulvodynia, dyspareunia, vestibulitis, interstitial cystitis, vaginismus, etc. It explains in detail the symptoms of each of the above conditions and also list some treatment options as well. It mentions a vulvar dialator, like one of the ladies here said she uses. It talks about the physical strains as well as the mental strains of our conditions. Please take a moment to read it, as you may find new and/or more information for you to use in your healing and road to recovery. This is actually the first article i found when i started my research on my condition. I emailed it to my husband and then we printed it out and took it to my doctor with many questions and highlited paragraphs from the article link below. We both found it to be very informative and gave us a great basis to start and continue our research for this condition which eventually led me to this website where i met all of you ladies and Frank B.! I love you all! :-)http://www.newshe.com/articles/rosenbaum.shtmlI hope this helps for those of you who aren't sure what your problem is or where the problem lies! Please give me some feedback on wheather or not this link helps anyone. Thanks!
CommentTo Rozlynn: That was a very good article. It couldn't cover all the symptoms we see here but it gave a lot of information. Anytime this is written about more and more people will understand either there own pain or that of someone who is suffering from it. Thanks for passing this on.
CommentI am not crazy! I have sat here for two years thinking that I am crazy! My mother thinks that I am a hypochondriac. And try to explain to a man the kind of shocking pain that leaves you feeling raw and tired inside when you look fine on the outside. I spent a year in and out of the doctor before I decided to stop going altogether. I was diagnosed with Fibromyalsia and arthritis. I have had a laperoscopy and told that my pain is due to cysts. The doctors then tell me that I should have a hysterectomy. At 23 years old? I stressed as well that this was a STD, spent many days in nights in tears, and almost tore up my relationship with my fiancee. I sometimes felt I should have intercourse even though it was painful. I would cry afterwards and my fiancee couldn't bear to hurt me anymore. I have overall muscle pains, body aches and allegies galore. I finally found Tide is a good detergent (the plain kind). I want to know why my doctor never brought this up as a possibility?! Why was I close to faint with shooting pains tearing apart my insides and this wasn't even discussed? How frusterating this has been and I can't believe that there are so many women out there with these same issues. I have been going along with my daily routines in pain because I couldn't spend any more time on my couch. I took Calcium pills and felt worse. What is that about? I just started getting irritated on mt upper legs and thighs, I now wonder is it doesn't have something to do with sweating during workouts in my gym pants... What do you think?Does anyone know if there is a doctor in Louisiana??? Anywhere where in the state I'll travel if I need to. I can sympathize with each women out there and wish you all luck....
CommentDISHA- no, you're not crazy. DO NOT have a hysterectomy. you are way too young to have that done and tearing out your insides will not cure the pain. i went through the same thing you did. doctor after doctor, tears and depression....finally i gave up. it ended up getting so bad that i couldn't make love to my husband without crying from the pain and burning, making him feel like it was him that was hurting me...that made him feel really bad....then i would run into the bathroom and soak in the hot tub right after having sex. that was the only thing i could do to relieve the pain. alot of doctor's don't know about this condition. it took me about 8 doctors to find out what my problem was. i was tested for every STD in the book, and i came out squeaky clean, every time. i've had doctor's tell me 'it's in your head', etc. it got to the point where i had to do my own research (leading me to this site) and printing out tons of info, taking it to my doctor and asking him about it. i will tell you this...it took me long to find the right doctor who finally diagnosed me. he is very patient, very kind and compassionate. he examined my outside vulva area which most other doctor's don't even do. they just put the speculum in and say, 'i don't see any yeast, you're fine'... but we're still in pain. my doctor, god bless him, diagnosed me with vestibulitis. the vestibule glands at the opening of my vagina were inflamed and when he touched them with a q-tip i almost hit the ceiling from the pain! Um...the calcium pills are to decrease the oxalate crystals in your urine, many think this causes their flare ups. i am taking the calcium citrate tabs. i don't have a clue about your upper legs and thighs being irritated. and tide detergent is the worst detergent for me...it makes me itch. yuck. i use ALL Free and Clear. i do think the sweating in your gym pants could irritate you. when it's hot in the summers, i feel irritated from sweat. um... take the time to read through some of the past questbooks. you may find some very helpful information here. i have come a long way since being on this site. i am able to have sex again, but i can't control the infections. and i think the infections are what makes my vestibulitis flare up. i don't know.... it's all very depressing and annoying. but there is hope, and there are things you can do to ease the pain. read the past postings. hope this helps. good luck. email me if you need to talk.
CommentI have been most likely suffering from vulvodynia for over five years but have never been diagnosed. My adventure, as I like to call it, started when I began taking birth control pills when I was 18 years old. During that time my periods got much heavier, extremely painful and I started to experience a horrible burning sensation on the lower half of my vagina during intercourse. I was on the bc pills for around 5 months and by the third month, the burning pain was almost constant. I finally decided to stop taking the pills and magically my pain went away. I was pain free for around two years, however, my periods were still extremely painful and I wa diagnosed with having endometriosis which I take vicodin for in order to control the pain. About two and a half years ago, I began to experience the vaginal burning pain during intercourse but only during specific times of my cycle. Specifically, during my period and for the first seven days after my period ended. After those seven days were over, I was pain free again. During the past 6 months the pain has been getting worse. I am unable to have sex anymore because I am totally terrified of being in pain. I am wondering if perhaps my pain is due to hormone fluctuations, allergies (I am allergic to quite a bit of things and take zyrtec on a regular basis-come to think of it, my pain started getting worse when I started taking the drug-does anyone know if allergy medications can dry out mucus membranes?) or diet. I actuallt tried the south beach diet to lose weight and I noticed that I was not suffering from a lot of pain during that time. However, because I am sooooo stressed and depressed from this pain I am in, I find it hard to stay away from ice cream and bread. I was recommended by my gyn to see Dr. Peacocke in NYC and I was wondering if anyone had anything good to say to her. Or if anyone had a great doc to recommend in the NYC area. It would be really great because I am reaching my wits end. I am in a great relationship with my fiance, who has been extremely wonderful and understanding about my pain and has been there for me every step of the way, but I miss sex and i want to be able to enjoy a normal life again. If anyone has any advice or just wants to say hi you can e-mail me at nmcarring@aol.com. Thanks!
CommentI'm back. Thanks to the few who responded to my post; you gave me very honest advice and I needed that. It helps to know you share in the anger and frustration I have. When I wrote that post, I was in a bad place. I feel hopeless so often. It's hard to see the bright side sometimes. As for my husband, I love him and he's still my best friend; but, that's exactly what he is to me...my best friend! We are completely platonic, and I pretty much call him my roommate. It's not fair to him that once he took his vows with me, he had to swear to a life of celebesy. I'm so afraid of his penis. Not only am I physically incapable of having sex with a man but I'm also afraid of it. Divorce is out of the question for us. And that means no same sex affairs. So you all are right: When a person takes vows, they must live up to them. :) Thanks again for the advice. Gotta find another way to cope with this somehow, someway...
CommentI can't believe it! Have been visiting the Docs since October, he tested for infections - clear, so he diagnosed thinning of the vagina and prescribed HRT pessaries - didn't work: prescribed anti-histamine tablets - didn't work. Referred me to a gyneaocologist, who prescribed cortisone+antibiotic cream as he thought it could be an infection/exema, which were showing no visible symtoms. Guess what? Didn't work, so I am off for a biopsy next week to check for pre-cancer cells. He has admitted that he believes this will be clear and thinks I have vulodynia: if so, he is referring me on to a "specialist" gynaecologist, who works in conjuction with a dermatologist. Yippee! What is bugging me, after reading the guestbook, is that I have mentioned to both the doctor and the gynacologist that I can be symptom-free, take one mouthful of beer/wine/chocolate, and within minutes be jumping around the round having an horrendous attack. Both of them have looked at me as those I am from the Planet Zog. Utter disbelief is written all over their faces. What a relief to have confirmation from so many fellow-suffers that I am right.
CommentI just got a nasty email from somebody and I thought we were all in this together not against each other. Yes, I'm the woman who wanted a same sex affair. I'm sorry if I offended anybody. I have been going through a full range of emotions and I'm trying to work them out. Please don't judge.
CommentHi ladies....I haven't posted here for a while but I wanted to make a couple of points. Kitsune Angel - don't worry about the negative email. I totally understand where you're coming from. I just watched a romantic film and got upset when the couple had sex for the first time. I thought...aahhhh, I remember when it was that easy. I've often thought it would be much easier to deal with vulvodynia as a lesbian. Stuff 'em Kitsune. It's a complex problem that brings up complex emotions. Most people here understand that. As for my own progress....well, I started burning so bad a few weeks ago that I had an ice pack between my legs. The FIRST time this has happened. So I thought about what could have made me burn so bad and I worked that it was a combination of tomatoes and red wine. I've eliminated both from my diet and the burning is pretty much under control. I've started taking acidophilus, calcium magnesium citrate, evening primrose oil, black cohosh, olive leaf and ox absorb but have only been on it for a week and am yet to see any benefits. My biggest problem is sitting. GOD IT ACHES SO BAD. I'm going to try a few other things....acupuncture, physical therapy and will let you know how I go. I'm getting married in September and am determined to make love with my husband on my wedding night.
CommentHi - before today I had never heard of vulvodynia. I was trying to find info on the net about sore/burning vulval skin because I get this problem a lot. I used to think it was caused by thrush but thrush treatments seemed to make it worse, especially the creams. I have had tests for bacterial infections but nothing showed up. I am a keen cyclist, and find that cycling exacerbates the symptoms - sometimes it's so painful I can't cycle. I think my husband reckons I use it as an excuse not to have sex, though there have been many times when I haven't refused but have really suffered afterwards. Now SUDDENLY I have come across this site and realise that it's not just me being a big softie, and that there may be a reason why my skin keeps tearing and I get sore red spots and burning! And I am not just imagining it. I have suffered from depression for years, and this condition, when it flares up, just makes me feel so useless, hopeless and despondant. Because I suffered a lot from cystitis from the age of 9 I already know about cotton underwear, not using soaps or biological washing powders etc. But what is the next thing to look at, do you think? There is so much to read on this site that I can't take it all in! Also, does anyone else cycle, and can anyone recommend a good saddle? As well as a sore perineum I tend to get bicycle seat neuropathy (due to pressure on nerves) which gives me pain in my legs and feet! All feedback greatly appreciated, and best wishes to all who post here.
CommentTo Kitsune Angel: I hope you were not offended by the post I wrote in response to yours. I would advise any married person to settle their marriage before moving on to another relationship. I think we all make judgements constantly on what we see, hear and read. To politely comment even if it is to disagree should be allowed, to insult and be cruel is out of line and unnecessary. If my own wife wanted to have a lesbian affair it would of course have a great impact on me but there would be a way of doing it that would demonstrate more respect for what we had as a married couple. I would want her honesty upfront. I would want her to end our marriage before exploring her other sexual interests. It's not all about me but rather a way of dealing with important things such as marriage that leaves you and your partner with more dignity and respect. So by all means don't let insults stop you from being happy in life, if you really want to explore other relationships my advice is go for it but finalize your current relationship first. Hope my words were more positive than negative.
CommentTo Rose,I'm glad you found the site and yes, there is a lot of info to take in. As you've probably figured out, There isn't only one treatment for this as there isn't only one type of problem. One of the theories behind vulvodynia is that it is related to the pudendal nerve. This nerve leaves the lower back, crosses through the pelvis (going through various muscles and ligaments as it does so) and finally reaches the vulva. There is a site that you should visit: www.pudendal.info It addresses this problem. Unfortunately, cycling is one activity most of us have had to give up. In my case, when I'm well, I don't want to risk a flare up and when I'm in pain, sitting is difficult enough, let alone sitting on a saddle. There is one type of bicycle seat that I have used though to go on quick tours with my husband and daughter. It's made of 2 cups, adjustable in angle and in width, where the ischial tuberosities (the bones we sit on) are supported but no front part. My mom ordered it for me from the internet a few years ago. I'll try to find the reference for it. It takes some getting used to and I wouldn't go on a long tour with it but last summer I did use it a few times.I'll get the reference and write again,Dominique
CommentHi again,I found the reference for the easy seat. Here it is. http://www.beachcomber.com/Gadget/Outdoor/easyseat.htmlMight be interesting for a lot of people out thereDominique
CommentAwww...Shannon. I wish you the best on your road to recovery....and a happy wedding night. I just got married this past December and I could've cared less if we had sex that night or not. i knew it would hurt... and i didn't want to remember my wedding night like that. but we did it anyways (it was my wedding night!)... i then soaked in the hot tub afterwords to calm the burning. i too, am taking a bunch of vitamins and supplements...i am feeling alot better and the hubby and i are able to have sex, once again. sometimes it still burns alittle, but not nearly as bad as it did before. definitely cut out the red wine. i just had two glasses of white zin last night and boy am i paying for it today!!! i am burning really bad today, all because of that darn wine i drank. never again. i wish you all the best and please know that i'm thinking of you. :-)
CommentI have been suffering from vulvodynia for two years. Discovering my condition shortly before my marriage to my husband. Because I had not been previously sexually active it came as a shock when I experienced excruciating pain during a pap smear just before the wedding! My gynocologist did not have any idea what it could be and because of the short time we could not experiment with very much to find a solution. She tried Amitriptolene which did not help, but I was only on it for a few months. Then she perscribed lidocaine to help me get through my honeymoon. After I was married I moved to live with my husband 2000 miles from my gynocologist and because of new insurance I had to go to a family practice physician to get a referral. She was terrible and didn't believe me when I told her my symptoms. Because of that and other circumstances including a pregnancy I was unable to continue to find help. I am now finally at a place where I can begin to heal. With signifigant stress reduction I have noticed some improvement, but am still suffering. I have just found this site and am reading "The Vulvodynia Survival Guide". I am very hopefull that I will be cured of this and am looking forward to a painfree sexual relationship with my husband.
CommentRozlynn- Sorry I haven't e-mailed you yet for that doctor's phone number. We just switched to another internet provider and the e-mail account is not set up yet. Just another thing to deal with! LOL Hey, is there any alcohol that is not too bad to drink? I've got some big events coming up (graduation parties, 50th anniv. parties, etc. ) and I would like to enjoy a drink or two without suffering too much later. I see that Bud beer is rated as a medium oxalate and red wines can be okay for some. Any suggestions or do I just have to be the desiginated driver again? I guess that just once I would like to go someplace and have a drink while wearing tight pants. Or is that only in my dreams?
CommentShannon: What a kind post! Thanks so much for your words of support and understanding. At least I know I'm not alone in my suffering and all the other emotions going along with it. I also put a ban on myself for watching anything movie that has sex in it. It depresses me so much and puts me in a big ol bucket of despair. So I'm stuck watching the "G" rated stuff, lol! I already deleted the message I got, and I'm moving on. By the way, congratulations on your engagement and upcoming wedding. You have a very supportive partner, that's awesome! Take care.
CommentFrank: You didn't offend me at all! On the contrary, I'm taking your advice and working things out with my husband. I'm not going to back down on our marriage or do anything that goes against it. I'm just gonna keep my head up and continue dealing with this for as long as it takes. Thanks again for your advice!
CommentPA Cindy... take your time...it's ok. i'll still be here when you're ready. tip on drinking alcohol. if you MUST drink, have one glass of water for every glass of alcohol. that may help to even out the burning you may have the next day. i'm not sure, it's just an idea. KITSUNE...i wish you the best of luck in keeping your marriage together. i know how frustrating it can be. i know the insecurities it gives us as women. i know how frustrating it can be for our husbands. try taking him to a doctor's appointment with you. that's what i did. since then, my hubby hasn't said another word about not getting 'laid'...nor did he tell me it was an excuse. my doctor explained everything to him and now he understands the pain and where it's coming from and why. Best of luck to you! On another note...I am wearing a thong today! :-) HA! it's not bothering me yet, but i'm wondering if tomorrow i'll wake up with an infection or a flare-up. but hey, i've made it this far!! i wish the best for you all on your road to recovery!
CommentHello, this is my first time on this site. I got a lot of great information off of it so far. I am 21 years old and just had my second child 3 months ago. Well, about 2 months before i had her, I started expereincing a terrible pain in my vaginal area. I ignored it and just thought it was a part of that pregnancy (I never brought it up to my doctor, which i know i should have) Well my daughter is a little over 3 months old now, My pain is excrutiating (SP). My pain is only at night time mainly. When it first started, I use to be able to walk around for about 2 minutes, and it would go away. But now, the pain is non-stop! I can feel the pain lightly during the day, but come night OMG it hurts so bad. It keeps me up all hours of the night (the hours of which my daughter don't keep me up of course) And the pain usually continues for about 2 hours after I wake up and it slacks of a lot. I went to the gyn last week and she said she don't know what it is, she told me there is a possibilty that is could be vulva dynia, She told me to look it up on the internet and for me to see if my symptoms match what i read. Isn't the doctor suppose to be the one to tell me if my symptoms match. I sit up crying every night because of the pain. I use to not have sex because it hurt to bad, but the way I see it now, I am already in pain, so why not? I really have nothing to go on with this vulvadynia. Could someone email me something with the symptoms please?? Thanks, Tara
CommentTo Samantha from England and ALL,Yes, I have experienced the exact same thing. (itching and burning just minutes after consuming wine or beer. Also migrane headache only after the chocolate.) And when I told the doctor he said that wasn't possible except with a major allergy. He never suggested testing me for such an allergy, though. I have come to suspect that this may happen to me because of "leaky gut syndrome". I did drink beers with the best of the boys for many years. I have either developed a true allergy or else a hypersensitivity to yeast. I no longer drink beer or any alcohol (for the past 2 years.) I don't eat any sugar. If I do these things it causes an immediate flare up. Surgery would not be advisable for me because although the area my gynecologist wanted to cut was small and it was the only area that showed redness, I know my problem is not confined to one location. As long as I can keep my symptoms at bay and have a normal sex life, I am fine. It was all those years of not having any symptomatic relief OR any hope that got to me. Now, I have 3 things that help me (after trying nearly everything there is). They are yoga, extremely low carb diet and boric acid suppositories. I wonder whatever happened with Susanna Kaysen, the fellow sufferer who wrote "The Camera My Mother Gave Me" which, if you haven't read it, is a true story about her vulvodynia. Maybe I'll try to conact her............One thing that I was interested in trying for a while but never did was emu oil. Has ANYONE out there tried it? If so, please post your results. Thanks.
CommentHi Nanci: I use Emu oil in the am for dryness. At night, I apply Estrace cream. I don't have constant burning anymore, but still have horrendous pain with intercourse.
CommentROZLYNN, I think your advice about drinking a glass of water with every glass of alcohol is a fantastic suggestion. Just the other day my partner bought 'The Yeast Connection Cookbook' and we are almost ready to try a yeast-free diet. However, the thought of no alcohol, EVER, makes me feel pretty miserable. I don't seem to have a bad reaction from alcohol but I'm sure it doesn't help either. NANCI, I've heard yoga can be really helpful for vulvodynia. A physio in Sydney advised me to keep butt and lower stomach muscles strong. So many things to try....my partner and I are feeling really positive about getting this thing under control.
CommentNANCI - So do you have this under control now? You say you have a normal sex life?? Wow! That's big. Do you not have any symptoms as long as you watch your diet and keep up the yoga??
CommentNanci-I tried EMU oil and it burned worse than ever. Just be careful.
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CommentI am 25 and have been suffering from Vulvodynia for about a year now. I can't seem to find a doctor that knows a lot about this condition. If anyone knows of a doctor in the dallas/Ft. Worth area please let me know! I have only seen 2 so far and I am starting to feel desperate. It is a relief though that there are other women out there that feel the same way you do!
CommentIs cranberry juice a high or low oxalate? Thanks!
Commentcranberry juice is low but causes irritation just like OJ is low but oranges cause irritation
CommentAs far as I'm aware it's the vitamin c in Cranberry and Orange Juice that causes problems for us. The confusing thing is that Cranberry Juice is often touted as a cure for urinary tract infections. Damned if you do and damned if you don't I guess. On other matters, I read a few of the old guestbooks on the weekend (from 3 or 4 years ago) and just wanted to say that there is a LOT more knowledge out there now and a lot more women reporting positive results. 'Twas all very encouraging.
CommentCourtney,See Dr. Raymond Kaufman at the Baylor College of Medicine OB/GYN department in Houston. In the whole state of Texas, I doubt you will find anyone more knowledgable and sincere than Kaufman. He is awesome. :)
CommentI take the Cranberry capsule supplements to help with my UTI's. The sugar and vitamin C in the liquid cranberry juice kills my bladder and causes me to flare up. I've been having MUCH luck since using all the vitamins and supplements. Sex is not a problem anymore. I can proudly say i'm feeling 95% well, every day. I think one of the biggest issues for me was reducing stress! That's where Nanci's (?) yoga comes in handy for her. Both times i had vestibulitis, i was under a tremendous amount of stress. The obvious reasons for the condition may vary for everyone though, but ladies, please and try to cut out sugar, cut out alcohol, and reduce stress. Take your vitamins and supplements and enjoy sex once again. Take care. P.S. if anyone needs a list of vitamins and supplements i take (that made me well) please scroll back through this guestbook, i posted it twice i think, or email me at the address above. There is hope ladies! :-)
CommentI live in the UK and have suffered with Vulvodynia since I was 20 (now 28), however I was only diagnosed last year, a few months before my wedding. I immediately also underwent a Fenton's Procedure which really helped for a while, until Easter weekend when I suffered from a Urinary tract infection and was drinking loads of cranberry juice and since then I have had major problems - so much so I am totally red raw and unable to sit still for a second. I was so glad to find this website because the doctor who operated on me has since told me can't do any more for me, and I can't find any more doctors to go to!!! This has totally controlled my life for years now to the extent I have tried almost every drug on the market except anti-depressants that are recommended (because my GP thinks its all psychosomatic). I have been told I have evrything from thrush to pelvic inflammatory disease and that I may not be able to have children. Mind you, if they wouldn't allow me to have a C-section (big debates on elective surgery going on here right now) then I wouldn't want to have kids because I'm so scared of the pain. I'm going to shoot off now and have a look at the low-oxalate diet since that was the search I put in that led me here. Some of you have added some excellent points, and Frank - it's great to get a male perspective!p.s about tea tree oil - I rarely have baths (showers only) but when I do I put a couple of drops of oil in the bath and I don''t get the usual probs.Take care everyone, and good luck in all your trials.
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Commentthanks KAREN. Lots of things burn me that really shouldn't so I think I won't worry about that one right now. Besides I'm feeling great this week. SHANNON Yes, I feel like I have this under control. My only symptoms left are an occassional itch or twinge. I can comfortably have sex once or maybe twice a week. This week I could pass any Q-tip test with flying colors. I know I am not cured because I still have to use the boric acid or I get pretty itchy. I should add that I used to get so raw and sore that I would actually bleed. A long time ago a doctor mentioned to me that oral sex could be a problem. I hate to admit it but I think he was right. My husband drinks a lot of beer and has horrible athlete's foot (which is caused by yeast, I guess.) I read in a mag last week that a new study showed that oral sex could cause yeast infections. One more thing to give up but it may be a key in this mystery. So, yes I am in control, and no I am not cured. I'm just celebrating a symptom free week and trying to remember what I did right this week. Later!
CommentKitsune Angel - I am also located in the Houston Area and have a great Doctor but he is discontinuing Cigna (my Insurance). I am hoping to be able to afford to see him with my out of network benefits but financially I am not sure if I can. So I am glad to have a recommendation.I am curious how many physicians did you see before being diagnosed? Have you had surgery? Or are you trying other methods? Thank you I can give you my email ? if you would rather correspond directly
CommentVulvodynia has been a part of my life for about 10 years. I have tried everything. Ex- Injections,oral meds,topical meds, surg, and changes in my diet. I have pain all the time. My MD wants me to do the alcohol injection to destroy nerve fibers. Has anyone had this done or knows anything about this?
CommentNANCI - thanks for your reply. It's fantastic to hear that you are relatively pain free. I'm sure many of us are inspired by that. I agree that this is something to be managed rather than cured. I want to try the Boric Acid suppositories but then again, I've never had issues with itching. We suffer so many varying symptoms!! My biggest problem now is localised tenderness and aching. That's why I've decided to see a Chiropractor next week. I'll let you know what she says. RETA - did you visit a Chiro in the end? After trawling through some old guestbooks I found this post:Greetings. AFTER SUFFERING FROM VV FOR 1 1/2 YEARS I HAVE BEEN PAIN FREE FOR 5 MONTHS - THIS TREATMENT MAY HELP YOU TOO. It is called Active Release Technique (ACT for short) and is practised by specialized chiropractors. What's on your list?: high acid diets (our caffeine culture), antibiotics, childbirth, tailbone/back injury, the pill, yeast, toxic soaps & detergents, tampons, lack of excersize, stress, stress and more stress - and many women carry stress in the pelvic area....SO, the muscles in the pelvic area can contract so tightly that they pinch all the nerves feeding into the bladder, uterus, vulva. A.C.T. is a deep massage-like procedure that loosens the muscles to unpinch the nerves. AFTER SIX 10 MINUTE SESSIONS MY PAIN WAS SIGNIFICANTLY REDUCED. AFTER 2 MONTHS OF BI-WEEKLY SESSIONS I WAS PAIN FREE. I continue to be treated once per week for "maintenance". My Chiropractor has also treated 2 women I know with the same success. There is a Centre in Colorado Springs which will refer you to qualified A.C.T. Chiropractors or Phsyiotherapists in your area. (They MUST by credentialized in spinal work.) The number of the Centre is (719) 473-7000. Hope this information helps. Mary. Note to Melissa: yes, I too suffered from Roseaca and scalp problems which are also side effects of high stress. Since starting ACT treatment my scalp is now back to normal and the Roseaca has slowed considerably.PS I have been seeing a wonderful PT for over a year now -Holly Herman. My hip is 'rotated' - the guilty culprit of this wicked vulvodynia. I recently visited a chiropractor who is 'amazed' at how 'tight' my back, lower back, abdomen muscles, thigh, hamstring..they should not be.....this is all connected to your pelvis, girls.
CommentI think it was Nanci who mentioned oral sex as adding to problems of burning or yeast symptoms. Without a doubt the mouth contains an enormous amount of different bacterias and yeast. My wife made the same connection several years ago before her current problems of vulvodynia which include the paper cut like tearing in the six o'clock position. I was never much of a drinker but I do like carbs in the form of sweets, so it is possible that my saliva contributes to the yeast . More importantly in my opinion is the condition of my oral health. I stepped up and started taking that very seriously. I had surgery to correct gum problems and have been brushing, flossing and using listerine twice a day. My health is better and I feel I am exposing my wife to less bacterias and germs. I have been in a habit of really cleaning my hands and finger nails also to eliminate dirt and germs from coming into contact with her body. Without getting too graphic, there are times when I am engaging in oral sex and can tell she is raw. That is the nature of vulvodynia, raw skin with no apparent cause and sometimes it involves the clitoris. It kills me that I want to give her pleasure and anything I do causes a problem. Very frustrating. Best advice is to have your mate use a good mouthwash and brush prior to oral sex and if there is that rawness don't force the issue take a break. My wife has had problems with yeast and urinary tract infections all during our twenty plus years together. A couple of years ago we took our first cruise and on the second day she started suffering from a U.T.I. We blame so many things, sex and the effect of semen upsetting the acidic balance of the vagina, oral sex, wet bathing suits, too much heat and so forth. The doctor on the ship said something that kind of made sense also, he said the relative closeness of the vagina and rectum makes getting an infection very easy. When her urine has been cultured it does come back with e-coli present. She has great hygene as I am sure all of you ladies have but this is such a difficult thing to maintain 100% every single day. With us guys climbing all over you at times it is very easy to cross infect. When we do have sex I am very aware to avoid certain positions or movements that might cause that to happen. Things sometimes get a little less passionate and a little more mechanical but you need to break the pattern of events causing the problem. Sorry to go on and on.
CommentI was recently diagnosed with interstitial cystitis. I've been having burning sensations since January and nothing seemed to help. I've been symptom free for about 2 weeks now. My husband and I had sex a few days ago and used KY jelly as lubricant. Now today I am burning around the vulva and am experiencing itching. Thinking back, this has happened every time we've used KY jelly in the last few months.I wonder if I don't really have interstitial cystitis.
CommentAngie- Isn't one of the main symptoms of interstititial cystitis ( IC ) a constant and/or sudden urge to urinate? Did a doctor diagnose you or was that a self-diagnosis? I don't have any of the symptoms I read on-line and the low oxalate diet is one of the treatment for this. So, if I don't have IC, why should I be on the low oxalate diet? Can anyone explain IC to me? I've read that V V is a side effect IC. I don't seem to have any problems with my urination, so can I rule IC out? Any info would be much appreciated. Thanks.
CommentINTERSISTIAL CYSTITIS: Quote from an internet page: Interstitial Cystitis is an inflammation of the bladder that has long baffled doctors. Some researchers speculate that in some cases it could be bacterial based but the current testing methods are not detecting it. To support this theory studies show some IC people are getting relief from long term antibiotic therapy but this is not without it's problems as the bacteria becomes resistant and the antibiotics are harsh on the body long term causing other health problems. My doctor says that IC, basically is an irritated bladder causing many infections and frequency and/or burning with possible bladder spasam upon urination. He also says it can and very may well be related to VV. The two go hand in hand. VV may cause IC and IC may cause VV. Not in all cases though. Here is another quote: Interstitial cystitis is a chronic, painful inflammatory condition of the bladder wall characterized by pressure and pain above the pubic area along with increased frequency and urgency of urination. This occurs because of chronic inflammation of the lining of the bladder and swelling of the interior walls of the bladder. Affected individuals urinate frequently with pain even though there is no diagnosed bladder infection. In a small percentage of cases, people with interstitial cystitis also have scarring and ulcerations on the membranes that line the bladder. Interstitial cystitis typically affects young and middle-aged women, although men can also have this disorder. The exact cause of interstitial cystitis is not known.intersistial cystitis association website: http://www.ichelp.orgHere is also a link to a website labeled as the intersistial cystitis alternative medicine associationhttp://www.icama.org/?src=overturehere is a link for bladder problems of all kinds and remedies for UTI's, IC, bacteria, etc. there are alot of products on this page to buy and try out for your symptoms.http://www.thenaturalbladder.com/?source=overturehope this helps for you ladies!
CommentJust dropping in to let you know how I'm doing. I have only been on calcium citrate since march 1 along with sitzbaths,going without underwear, and recently trying to live without, yeast, alcohol, sugar, corn, and dairy as well as staying as low oxalate as possible I am doing some better and know if I got really strict with my diet and settle down and find a home and job (I've been bouncing back and forth between relatives for 6 months...I started burning about 8 months ago) that I could improve even more. Lots of emotional stuff going on. Being 53, sick, jobless and homeless all make things work. I feel my self esteem returning as burning days grow less. My input to the rest of you who have suffered far longer is that I think you are on to something with this systemic yeast thing. Someone had ask if I had seen the chiro. I was forced to go because I started having dibilitating lower back spasms and couldn't roll over in bed or walk. The treatment helped that but I don't know if it helped the v's or not. I've never experienced that sort of back trouble before and wonder if it's related to this other crap. Well, hang in there and thanks to everyone, including Candi for their suggestions. I'm keeping an open mind about all and every one of them except the surgery(sorry) I couldn't do it but I have only suffered for 8 months. Best of luck to everyone. I hope there's a cure in the making!! Love to all Reta
CommentThis is the first time I've visited this website. I was diagnosed with vestibulitis seven months ago. I've had this condition for 2 1/2 years. Prior to this condition I had been seeing several doctors due to pelvic pain for 10 years since I was 16. Not knowing periods should not cause intense pain I did not see a doctor when I first started my periods at age 12. Pain caused me to vommit and have diarreha, miss many days of school. At age 23 I was diagnosed with endometriosis. It took many doctors before this was discovered. I had to have surgery to get a definate diagnosis. After the surgery I have treated with depo-Lupron injections, went into menopause at age 23 it was terrible. Took premerine and other types of hormones to try to ballance things out. My doctor told me I had many kinds of infections was treated for bacterial and yeast infections. All creams caused insane ammounts of pain. Oral medicines cauesd more infections. I am also newly married as many wemon who have posted are. Well its 3 years but I've had problems the whole time. I was finally refered to a vulvar disease clinic at the u of I hospital. My marriage was not doing well. Turns out all the medicines they were giving me for my infections were making my condition worse. He also said I do not have infections. At first the doctor perscribed topical steroids. I was in more pain than before. I visited with the doctor again and he told me to stop using everything even A&D ointment which many people can tollerate. I cannot. It has lanolin in it which is a diritive of wool. I'm alergic to wool. The only things he thinks i should use right now are baking soda sitz baths, I do this once to twice daily, and he said to use olive oil on the vestibular area 2-3 times daily. I actually use it almost everytime I use the restroom. I haven't read all of the postings but I haden't heard that people were using olive oil. I am currently much better than I was seven months ago. ( I also take calcium citrate 1200-1500mg a day) Unfortunately my husband and I are seperated so we are not having intercourse. I can't be completly sure that sex would be pain free but I'm sure it would be better than it was. I doctor said at my last visit that I am much better and when he did the Q tip test on one gland i didn't even feel it. I really recomend trying the baking soda baths in combination with the olive oil. These are very mild treatment at least they cant do any harm. ( I wouldn't think so, your doc could let you know) Please don't think my husband is a bad person for the seperation, he suffers from cronic major depressive disorder, he still loves me. Life is hard sometimes but good things still happen sometimes we have to look hard for them. Pray for a cure. I am considering going to a chiropractor, this seems pretty safe but expensive.
CommentI forgot something. I had read some posts about what could be used for lubrication durring intercouse. My doc recommended the olive oil every thing else had been irritating for me. I haven't had the oppertunity to try this but if someone does let me know if it works it seem to me like it might.
Commenthow much baking soda do you use in the bath?
CommentI was diagnosed with IC by a urologist just last month. Basically it's one of those "narrow it down" things. They have to just go through the list and mark everything else off. When he couldn't find any other cause for my pain and burning, he told me I had IC. He gave me Elavil, but it made me dizzy and I discontinued it. I hadn't heard that VV and IC are interconnected. I have a copy of the diet, but the only thing I have cut out is the caffeine and now my urinary burning and frequency are gone. It's just been since I've used the KY that I have the vaginal burning and itching. It's not intolerable, thank God. It's almost like a heat rash feeling.I don't see how you ladies have managed suffering for so long. My pain isn't bad so far and I'm miserable with it. I'll hope and pray for a cure soon.
CommentI got this info off a web site recommended here: For a sitz bath, they suggest 1 to 2 teaspoons of baking soda. For a luke warm bath, 4 to 5 tablespoons of baking soda for 10-15 minutes a day. Thye also recommend 8 oz of cranberry juice a day and 1200 to 1800 mg/day of calcium citrate.
CommentWhere do you buy olive oil? Can anyone suggest name brands? Thanks!
CommentLYNN--I use olive oil as lubrication, it does not cause irritation for me and works well enough. So when my husband and I attempt intercourse its a good alternative to store brands. There are too many chemicals and preservatives in store brand lubricants, I would never use those.
CommentTo the person asking where to get olive oil. Basically any store that had food in it has olive oil. It's w/the other oils. If you are going to be using it as a lubricant I would get Certified Organic Olive Oil from a health food store, that way you won't get any unwanted pesticides or chemicals in there that may cause you harm/irritation.
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CommentHello. I am really glad to have found this site. My doctor had told me that I should get to know someone my age who has this. It seems like there are a lot of people my age who suffer from this. I'm 26 I might have already said that. I'm having a pretty bad day. I feel like the sitz baths help the vestibulitis but can be drying to the vulvar and surrounding skin. Does any one else experiene this who uses the baking soda baths? Sometimes I start to ease up on them but then the vestibulits gets worse. My doc recommended using crisco vegetable oil on the other areas but I still feel a constant burning feeling. I've had bad reactions to almost everything. I tried Zinc oxide and that was really bad for me, threw it out right away. Depression is bad today all I want to do is cry. I miss my husband I know he has his own problems to deal with and this just makes things harder. I've read the book Passionate Marriage but it does not address issues dealing with health problems. But this is a great book. Does anyone have any books they could recommend about intimacy for peole with our, or similar problems? I've tried counselors, they tell me to go to the doctor take antidepressants, get a massage and picture my uterus in a color I like. I'm sorry these things don't work for me. Any one else gotten any better advice? Well, I did get one good piece of advice, pray for hope. I need it. Thanks
CommentTo Lynn: I'm so sorry you are going through this tough time. I can't comment on your specific pain but I do have a few overall thoughts that might be of help. My wife's mom has suffered with severe depression for many years, she takes medication and for the most part it helps greatly. So I think your husband will need to find that right combination of treatment to stabilize himself. You can't do that for him and you are not to blame for his condition the same way you are not to blame for the pain you are dealing with. Now is a time for you to be selfish, a time to help yourself however you can. I do know chronic pain and you need to break the cycle if possible. Maybe medication would offer enough relief to stop the pain or decress it. I can't imagine how you can be thinking of you marriage when you are so overwhelmed with pain. I hope you things turn around for the better in the mean while take one day at a time try to stay strong because where there is hope there is life. You are young and have a wonderful life ahead of you once you get this under control. I'll say a prayer for you.
CommentDoes the V book say anything about chronic non-healing vaginal fissures? Tearing is really my problem. I can't find anything on it anywhere. If anyone knows, please help me. Thanks!
CommentCR,I did biofeedback and found relief but at the moment I'm not doing anything and I need it. I didn't have surgery but am going to do more biofeedback in the future. I'm waiting on my insurance too. I was was a patient of Dr. Raymond Kaufman 2 years ago. I live in Seattle. I read the research he does all the time and I wish I could see him again. I know he takes insurance, which is a plus. If you are interested in the surgery, I know he doesn't perform the surgeries anymore but he'll refer you to, I think his name's, Dale Brown, to do the surgery. He is someone who's done the surgery many, many times and has a high success rate. I urge you to consult with Dr. Kaufman.
CommentHello. I hope every one is haveing a good day. Mine is ok. It is nice to feel there are people out there who understand what a trial this problem is. Thanks Frank for your encourging words and for the prayer, I really appriciate it. I will be praying for your wife and you as well. My husband is currently taking meds but I think counseling is important. Unforutnatly the counseling he had been getting did not seem to help at all. He is not going currently. I know my pain is bad but I've also seen what depression can be like and I don't wish it on anyone. Seems like the vulvodynia problems we all suffer from lend themselves well to depression too. I feel that alot of what the counselors tell me is the same. But I leave feeling more helpless that I did going in. This site seems very pro-active in that it encourages people to try things they have found worked for them. This helps me feel like I can have more control over my life. Kitsune, what is the bio-feed back therapy that you have tried? Is it done at the doctors office. I know the basic principles of Bio-feedback but am not really sure how this works. Could you let me know? Thanks.
CommentKitsune Angel ? Thank you for the info ? Drs. Kaufman and Brown have published books with my current physician Sebastian Faro MD, PhD.
CommentTo All: Just a word of caution to everyone, my wife has always received a card by mail letting her know it is time for a pap smear or breast exam. Well more than a year went by and when she finally contacted her gyn office they told her they no longer send notices. Life can be overwhelming for you ladies and the pain of vulvodynia adds to your concerns, please make sure these and other basic health tests are taken. My wife did get an appointment but has been having heavy irregular periods. She has to go back in a couple of weeks to has a biopsy of the cervical lining to make sure everything is alright. I can't believe how irresponsible some of these offices are. I think it was last year that an investigation of the labs that test the pap smears revealed how many errors occur. Lab workers test hundreds of samples a day and the opportunity for errors was high, don't know if that was ever corrected. Take care.
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CommentCourtney, I have VV and had surgery with Dr Kaufman back in 1991. That was the worst decision I have ever made. He did a perineoplastyand hymenectomy (took out remaining hymen tissue) and rearranged the skin at the opening to try to remove the red raw skin. Because he took out so much skin I can no longer have intercourse. I would tear and the pain was awful. I am now having to use dilators and tons of estrogen cream and massage to try to stretch the opening. I have been told by many Drs. since then that I had too much skin taken out. I understand Kaufman is a very knowledgable man, but at all costs I would stay away from surgery. It can cause more scar tissue which causes just as many problems as the VV.I now go to Dr Gina Anderson in Dallas at Southwestern Med.214-648-2863. She came highly recommended and has very high regard for Dr Kaufman. Maybe I caught Dr Kaufman on a bad surgery day, but it has changed our entire lives forever. We have really been cheated out of 11 years. Luckily I have a very supportive husband. I read an article called "Try Conservative Therapy for Vulvar Vestibulitis" written by Sherry Boschert. It was a study done on 23 women and 17 of them resolved tenderness and pain by alternately massaging a topical corticosteroid (.025 %Topicort) and topical antibiotic ( Bactroban 2.5% or erythromycin ophthalmic ointment) in that area 6 times a day. 7 Patients reported a recurrence of VV within 3 months. Those repeated the course. The success rate in the trial compares favorably with the resolution of symptoms after cryotherapy (48%) perinioplasty (56-80%) laser biopsy (7-63%) and other invasive treatments used in previous studies. Dr John W Ely of the Univ of Iowa was astonded when he was researching literature for treatment for a patient of his with VV of all the "invasive" things that were suggested for VV. He wasn't sure which part of the regimen used in the above study was benefical, the corticosteroid, the antibiotic, the massage, or the physician's interest (amen to that one.)!!! He thought the massage had something to do with it having patients actively doing something to help themselves. IT was speculated that all three treatments worked synergistically. The massage application used a circular motion pursued to the point of discomfort but not pain. Sorry this got so long, but I thought it very interesting and wish I had read something like this 11 years ago before I was cut to pieces. I realize some people have successful surgeries and good for them, so Courtney good luck with your decision. I think you would like Dr Anderson.Kitsune Angel, where can I get the published books by Dr Kaufman and Brown?
CommentI left out that the study I told you about there was a 74% response rate which was equal to or better than response rates published for more invasive treatments, which I gave the % rates above.
CommentLiz Mack - Do you still have stinging in the site the surery was performed? Are your current problems a contiuation of before surgey problems or just a result of surgery?
CommentI have not been diagnosed with Vulvodynia, but after reasearching my symptoms on the internet I came across this website! I was so overwhelmed by how all of these post explained exactly what was happening to me. I am glad to realize that i am not alone. This problem has cause great pain to me. My fiance cheated on me becuase i couldn't "satisfy" his needs... i felt like i could not fulfil my womanly jobs... I became really depressed. My fiance didn't understand that it was hard for me to have intercourse becuase it was so painful. He had never been or known anyone with this problem and thought that I just didn't want to have sex with him, which wasn't true at all. Once i was torn so bad I had to goto the hospital and have 6 stitches. I always thought that there was something wrong with me and i was just wierd. With intercourse i would always get torn and bleed and could only have sex about 2-3 times a week which put alot of strain on my relationship with my fiance since he was 22..and we all know how horny 22 year olds are... I am just glad that i came across this website and was wondering if anyone could give me any more information about this and some things I can do to help it. Also, does anyone know of a specialist in Maine that i could see? Maine is kind of sheltered when it comes to stuff like this so I think that is why when i have gone to an gyno they say its jsut because i am not getting wet enought before intercourse or something like that... thanks to anyone who can help! Please email me with any information regarding vulvodynia!
Commentwhen i was first diagnosed with vvs about four months ago, i was overjoyed to actually have a name to go with my condition (five doctors later...!). i hadn't been dealing with it for very long, compared to a lot of other women's stories i had read. i instantly joined two vulvar pain message boards on yahoo to have a support system. i shared my story with everyone on the board, and among the two or three supportive posts i got in response, there were about eight or so posts stating that i hadn't had it long enough to know what i was talking about or to even consider surgery (which is something that i was very much considering). it wasn't really what i expected from a large community of women who were sharing the same affliction. i expected support, and instead, i was among a large number of women who wore their vvs as a badge, as a way to boss other people around and tell them that they were right and all of us paeons were wrong. and i come here to share my story with you guys, and i find more of the same. it really saddens me that a few people have to be so disrespectful, and i know they will reply that they weren't going to sit around while someone else called them stupid, etc etc, but that's not why we're here. i'm not going to stand on my soapbox for long, just long enough to say that i am quite saddened by the attitudes of a few people in places where i expected support because we're all dealing with the same issue. anyway, i had a vestibulectomy on thursday. my doctor was wonderful and kind and intelligent and i trusted his judgment, and i was tired of dealing with my pain. i had tried estrace, and steroids, and a new diet, and biofeedback, and physical therapy, and going off birth control. nothing worked and it just got worse. so i chose surgery. perhaps some of you will think it's a cop-out, since i've only had vvs for about fifteen months. but that was enough as far as i was concerned. i am still a newlywed, and enjoy sex way too much to play the waiting game. anyway, i have high hopes and just wanted to share my little piece of joy with a supportive group. hopefully i won't get any hateful responses.
CommentI have to say your fiance is completely insensitive. I've had the same second degree tear for 4 years and it's been sutured twice to no avail. It makes intercourse impossible. Therefore, I've never been intimate with my husband and I've been married 3 years with no sex! I can count on my hand the number of times I've cuddled with my husband, forget having sex!! So when you say you have sex "only" 2-3 times a week, that sounds incredible. Doesn't it hurt? Especially with the tear? You must not feel anything! Geezsh!
CommentWrite in months from now and let us know if you are living with no pain after surgery.
CommentTo Liz Mack, Victoria & Lauren: Liz God Bless you for all you have been through and your ability to not be so bitter towards your doctor. "Maybe he had a bad day" is not what I would be thinking, so you must be wonderful person. My best to you and your family. Victoria, yea 22 year olds are horny and so is this 51 year old but that doesn't give me permission to cheat. I'm not being disrespectful to you and your mate but a strong sex drive does not excuse cheating not at his young age or my old age. You love him and that is a beautiful thing but he can get you sick from having sex with other partners. Take care of your health first and give him time to make a choice and stick to it. Lauren best of luck with your surgery and I mean it truly. I think you need to give some of the women here a break when it comes to getting upset and saying mean things. You said you have had pain for fifteen months and that is a long time, imagine the women who have had pain for several years. They have tried different things and nothing helped, maybe surgery is out of the question I don't know. I have been reading and posting here for a few years now and I see a pattern of someone having success from something then posting about it and then there is this outbreak of negative comments. It's like they are saying " yea great for you now you're okay but I'm still in pain and what helped you won't help me". I hope you and others who get relief will still post your results. You can't make the world a happy place for all those in pain but you can help those who want to know. In the end it is all about you any way, so don't take any negative post personally you know who you are and that's all that matters. Hope you have good recovery.
CommentTo Liz Mack: I hope your surgery is a success! Because it seems like this condition is caused by different things for different people, this may work for you. Its good to know there are options. Its a risk but I definitly understand why you made this decision. When I first found out what I had I thought that I would have the surgery. I will nerver rule it out completly. For now I choose not to but I respect the decision anyone makes in effort to improve their health. Even if things don't turn out the best its important to remember that there are always other doctors. Never give up. All of us are very persistant about geting the health care we need and deserve. We are intelligent women who have researched and probably know alot more about our own bodies than our doctors do. I wish everyone the best in whatever way they choose to be healed. I pray yours will be a success!
Commenti am hereooohohohohohohohohohohhohohohohohohhhhhh
CommentI didn't really have stinging before surgery. I had red raw skin that kept tearing. I had a hysterectomy in 1986 and the lack of estrogen most likely contributed to the original problem. The purpose of the surgery was to remove the red skin and replace it with new skin. The after surgery results are even worse in that now all the skin on the inside rip and pull away from the inside wall when stretched as well as the outside skin. Dr Kaufman cut away the bad skin and pulled skin from the inside out to create a new opening. Pretty drastic!!To Lynn, not sure what you are talking about. I am not going to be having surgery EVER AGAIN on this. I have already had 3 surgeries and there isn't enough skin to work on again. It has been a very long haul, but I hope and pray that with diligence using the dilator and lots of estrogen cream I might be able to "endure" having sex. I put it that was because I don't think things will ever be right again.
CommentHi everyone.. without repeating the same info about symptons and depression etc as we all have, Im 30 and have suffered this problem for ten years. One thing this site has given me now is that im not alone in dealing with this. My question is to everyone : has anyone linked this problem to childhood/sexual abuse and/or neurological diseases? I would love to have some feedback and also hear from those who have had life changing results for this problem. Thank you, take care.
CommentLIZ- Have you tried the lidocaine (sp?) cream? My doctor prescribed it to me, but i was too afraid to use it. It seemed as though everything and anything that touched my vagina gave me infections causing the vestibulitis (i think.) Anyways, the cream is a topical numbing thing that you put on your vulva, wait about 10 mins., and then you should be able to have pain free intercourse. That's what my doc said. But i never used it. I am so sorry to hear about your unsuccessful surgeries. I can't imagine what you must be going through. On a happy note, i haven't been writing in that often anymore because i feel i am 95% almost 100% back to normal again. The hubby and i are enjoying pain free intercourse once again. If anyone needs info on how i did it, please email me. I pray for all of you. I know how miserable i was...and now i'm better. Hope you all have a great day.
CommentRozlynn, Yes I used lidocaine for years. When we were able to have sex I would get UTI and I think the lidocaine contributed to that. Yes it really does help. I never got any burning from it. My husband said it numbed him too tho, which wasn't a positive thing for him. I would like to know what made you better. I don't know if we even have the same problems tho for me to relate to, but I am so glad someone does get better!!!
CommentI have just read the guest book for the first time and have sat here and cried - reading all your hopes and fears and symptoms and stories is like reading my own diary!!!It is so depressing that there are so many of us living with this hidieous thing. I like so many of you have suffered with cyctitis most of my sexually active life, i have had suspect smear tests - and have tried for 6 years to get pregnant (don't know if its connected), i have very painful heavy periods and have suffered all the symptoms of vulvodynia for the last 6 months. I am seeing a homeopath which has helped with the period problems but not the vulval/ureathral pain. As you all know - sex is out of the question or very infrequent making the chance of having a baby more and more unrealistic! But then i don't know how i would cope with this pain AND a new baby! I am not religious but have never prayed so much in my life as i have now for this thing to go away and to be normal again My thoughts are with ALL OF US who have this and thank god for this site!!!! ( any other sufferers in the uk please contact)
CommentLIZ- I don't think our conditions are exactly related. I have vulvar vestibulitis. I truly believe that cutting out stress is one of the biggest parts to beating this thing. Both times i was struck with VV, i was under a tremendous amount of stress. Stress makes your immune system weaken, therefore making it easier for our hormones to be out of whack and much easier for me to keep getting infections, repeated infections. I have been following some of Candi's advice and Wendi's advice, as well as some other women's advice on this site. (God bless this site and all of you women) I am taking calcium citrate tablets to 'neutralize' the oxalate crystals in the urine which i believe irritate the vestivule glands and my bladder. I am taking grapefruit seed extract to help build and maintain a healthy immune system....it's also a great anti-fungal. I am taking cranberry supplements to help maintain a healthy bladder. I can't tolerate the sugar in the cranberry juice. Sugar, alcohol and caffeine are the devil in my case. I also take acidophillus (sp?) supplements to maintain healthy flora in the vagina, preventing any future yeast infections. I was also on an anti-depressant fluoxetine for only one month. i truly believe the fluox. gave me the strength i needed to rid myself of the stress. I'm sure you, like every other woman on this site were/are in so much pain and every day is a struggle, just to wear a smile on your face, to know you can't satisfy your husbands/boyfriends, to know you may never be able to have children because sex has become impossible... THERE IS HOPE. I can't speak for the women who tear, for this is not my problem... but for those of you who have the vestibulitis, i'm sure i have this beat, and i wish a million times i could help you all. i truly believe in reducing the stress. that is a must. my stress brought on my VV both times i had it. (notice how i said 'had' it).... i feel 95% every day now. i'm on the road to being 100% and i wish so badly that i can help every one of you. i can only give you my advice and the things i have done/taken/used to prevent flare ups. Also, after intercourse, i use the Tucs medicated pads to clean myself...and i try to pee before and after too. I drink a TON of water. That is the ONLY thing i drink. If i drink anything else, it burns on the way out! So here is my advice as written above. Please if you are on your last leg of hope, at least try the things i have listed above, and hopefully you can all feel as good as i do. If anyone needs to chat, please email me. I'm here to help you all if you need a shoulder, just like you were all here to help me!!!
CommentLIZ- P.S. If your husband wears a condom, the lidocaine shouldn't numb him too. That's what my doctor told me. But we never did use the cream. it's worth a try. Best of luck!
CommentHi,This is my first time on this page even though I read a lot 3 years ago when I went through hell for 5 months. It started after a bad bladder infection, antibiotics, yeast, that turned into bacterial....the story goes on. I went to a Vulvodyniaspecialist in MI and she prescribed Elvil--sorry for the spelling! That made me a zombie! Then slowly it went away. A month ago, I became sexually active and here we go again. Yeast infection that just won't go away with 3 doses of Diflucan and 7 days of Tetrazol (spelling again) I don't want to go back to my gyno, cause he will give me more crap. Today I feel a little better but still have the discharge, white/ordorless. Gosh, can it still be yeast? Do vulvodynia suffers have discharge? The real clincher, I am going on a 10 day road trip with no relief in site. Any suggestions?Also, does anyone get a burning feeling in the mouth? I truly think I got a "yeast" situation.
CommentTo Joanne: My wife was on a site that directed her to send away to The Candida Wellness Center, 4365 North Bedford Drive, Provo, Utah 84604 for a free publication dealing with yeast. Roughly 6 weeks later it arrived " The Candida Yeast Answer", 74 pages with all sorts of good information. My wife hasn't even read it yet, she is always running after the kids or several other things even though I help out. From what I read it is a must for anyone suffering from yeast problems. The very back of this book has an order form for several supplements, I guess that's how they can afford to offer all this information for free. Many of the ladies here have gone through different cleansing regimines to rid themselves of yeast. Minerals seem to play a part along with the well know preventive measures, no synthetic underwear only cotton, avoid tight fitting clothes that don't allow your body to stay cool and breathe, swimming pools or hot tubs, along the lines of nutrition avoid sugars and high carbs which feed yeast, B vitamins while necessary for good health are said to feed yeast. Lastly something I read a year or so ago on Medscape for Women, semen can alter the ph of the vagina. So if you have sex a couple of times in a day or several times over the course of a few days the semen will cause the vagina to be less acidic and yeast will overgrow. I should have added the risk of infection from a sex partner with a yeast problem. Your mate must take special care if you keep getting a problem with yeast. He must have very good hygene with his whole body including mouth. I admit when I was first married and my wife had some yeast infections I was insulted at the thought that I might be contributing to them, that was ignorance and stupid pride on my part. Best of Luck.
CommentVitamin B doesn't feed yeast. Only if the vitamins are in a yeast base. Alot of B vitamins are in a yeast base so you have to read the bottle.
CommentFrank,Thanks so much for the information and believe me I know about the underwear and whole low carb, low sugar diet. I know what triggers it for me is the infrequent sex--I was inactive for 3 years. I am single and have had very few partners and always use a condom. I am wondering if the lubricant in the condom is causing the problem? However, I can deal with getting a yeast infection after being abstinate for 3 years...not to be funny, but I think my body goes into shock!! But what is very frustrating is not being able to get rid of the yeast!! NOTHING SEEMS TO WORK!! It is like I am destined to live with it for months and let it run its course. I am not diabetic and have been tested for HIV--primarily because I was soooooo scared of months of not being able to figure out what was wrong. It is very stressful and these women on this site who are in a loving relationship and have mates who understand are very lucky. For me, this situation has primarily ruined my sexuality because now I am conditioned to look at sex as painful. I have an appointment with my vulvodynia specialist on June 9, but until then, I am kind of stuck.
CommentTo Joanne: I'm glad you were not offended by my post, sounds like you are already knowledgable regarding yeast. I'm sitting here reading more of this booklet on yeast and it's really a program to rid the body of yeast. They're selling several different products to accomplish this miracle. I'm getting over a bad sinus infection and as much as I hate to take antibiotics I had to give in because it was getting bad. I eat a lot of carbs and probably could benefit from some of this stuff myself. You touched on several important things and sometimes writing or saying something helps to get it out into the open. Your association of sex with pain is something all or most of the women here can identify with. For me sex is the greatest thing I have ever experienced, aside from the obvious result the physical closeness and ability to give pleasure is a fantastic mind boost, unfortunately when it results in pain for the person you love it becomes very confusing and depressing. I'm always playing a balancing act between my desires, those of my wife and our constant sex partner Vulvodynia. You are very smart to take precautions with your intimacy and I think if you pursue your efforts to resolve your yeast problem you will be successful. Stay strong and best of luck. I'll shut up for tonight, sorry to go on ladies.
CommentFrankThanks, your wife is very lucky because you are a great person. Now, my new boyfriend, well we will see how he reacts to my turning down his advances and explaining to him why!!
CommentTo Liz Mack: Sorry I wote to the worng person. I need to be more careful. My previous post was intended to be addressed to Lauren Trull. I really hope I got it right this time. By the time I start typing I can't go back and look t make sure I got the name right. Sorry.
CommentJOANNE- there is a product called fungi-fuge or fungal-fuge(?) that Candi takes. it is like a vaccine sort of. she's taking it to rid her body of constant yeast. if you need more info, email me.
CommentFrom:Consumer Health Digest #04-20Your Weekly Update of News and ReviewsMay 19, 2004Warner-Lambert to pay $430 million for illegal marketing of Neurontin.The pharmaceutical firm Warner-Lambert has agreed to plead guilty and pay more than $430 million to resolve criminal charges and civil liabilities in connection with its Parke-Davis division's illegal and fraudulent promotion of unapproved uses for Neurontin, one of its drug products. Federal law requires manufacturers to specify the intended uses when they apply for FDA approval. Once approved, the drug may not be marketed or promoted for other purposes ("off-label" uses). Neurontin was approved by the FDA in 1993 solely for supplemental anti-seizure use by epilepsy patients. However, Warner-Lambert promoted it for treating bipolar mental disorder, various pain disorders, Amyotrophic Lateral Sclerosis (ALS, a degenerative nerve disease commonly referred to as Lou Gehrig's Disease), attention deficit disorder, migraine, drug and alcohol withdrawal seizures, restless leg syndrome, and as a first-line treatment for epilepsy (using it alone rather than in addition to another drug). The government charged that Warner-Lambert promoted Neurontin even after scientific studies had shown it was not effective for bipolar disease or as a sole treatment for epilepsy. Warner-Lambert's strategies included:**Encouraging sales representatives to provide one-on-one sales pitches to physicians about off-label uses of Neurontin without prior inquiry by doctors. The company's agents also made false or misleading statements to health care professionals regarding Neurontin's efficacy and whether it had been approved by the FDA for the off-label uses. Warner-Lambert also utilized "Medical Liaisons," who represented themselves (often falsely) as scientific experts in a particular disease, to promote off-label uses for Neurontin.**Paying doctors to attend so-called "consultants meetings" in which physicians received a fee for attending expensive dinners or conferences during which presentations about off-label uses of Neurontin were made. These events included lavish weekends and trips to Florida, Hawaii, and the 1996 Atlanta Olympics. There was little or no significant consulting provided by the physicians.**Implementing many teleconferences in which physicians were recruited by sales representatives to call into a prearranged number where they would listen to a doctor or a Warner-Lambert employee speak about an off-label use of Neurontin.**Sponsoring purportedly "independent medical education" events on off-label Neurontin uses with extensive input from Warner-Lambert regarding topics, speakers, content, and participants.**Misleading the medical community about the content, as well as the lack of independence from the company's influence, of many of these educational events. In at least one instance, when unfavorable remarks were proposed by a speaker, Warner-Lambert offset the negative impact by "planting" people in the audience to ask questions highlighting the benefits of the drug.**Paying physicians to allow a sales representative to accompany them during patient visits in which the representative offered advice that was biased towards Neurontin use.**Deciding not to seek FDA approval for any of the non-epilepsy indications for fear that approval would allow generic competitors to compete with a patented "son of Neurontin" drug that the company hoped would be approved for broad use.The plea agreement includes the following components:**Warner-Lambert will plead guilty to two counts of violating the Food, Drug & Cosmetic Act with regard to its misbranding of Neurontin by failing to provide adequate directions for use and by introduction into interstate commerce of an unapproved new drug. Warner-Lambert has, as punishment for these offenses, agreed to pay a $240 million criminal fine, the second largest criminal fine ever imposed in a health care fraud prosecution. The plea agreement specifies that Warner-Lambert's criminal conduct caused losses of $150 million and that the violations are felonies as a consequence of a prior Food, Drug & Cosmetic Act conviction.**Warner-Lambert will settle its federal civil False Claims Act liabilities and pay the United States $83.6 million plus interest for losses suffered by the federal portion of the Medicaid program as a result of Warner-Lambert's fraudulent drug promotion and marketing misconduct.**Warner-Lambert will settle its civil liabilities to the fifty states and the District of Columbia for $68.4 million plus interest for losses the state Medicaid programs suffered as a result of Warner-Lambert's fraudulent drug promotion and marketing misconduct.**Warner-Lambert will pay the fifty states and the District of Columbia for $38 million, plus interest, for harm caused to consumers and to fund a remediation program to address the effects of Warner-Lambert's improper marketing scheme.**Pfizer, Inc., Warner-Lambert's parent company, will comply with the terms of a corporate compliance program, which will ensure that the changes Pfizer made after acquiring Warner-Lambert in June 2000, are effective in training and supervising its marketing and sales staff, and ensures that any future off-label marketing conduct is detected and corrected on a timely basis. In addition, Warner-Lambert agreed to an injunction by a state court against continuing the improper conduct.The allegations pertain to marketing that was done before Pfizer acquired Warner-Lambert. [Warner-Lambert to pay $430 million to resolve criminal & civil health care liability relating to off-label promotion. USDOJ news release, May 13, 2004] http://www.usdoj.gov/opa/pr/2004/May/04_civ_322.htmIn 1995 Warner-Lambert was fined $10 million after pleading guilty to one felony count of fraud for failing to notify the FDA about stability problems with its anti-epileptic drug Dilantin.
CommentCan anyone tell me if with a yeast infection, after 3 doses of difulcan, 7 days of tetrazol and it still isn't gone, will it harm me if I do another 7 days of tetrazol? Again, I'm panning a long road trip in the next 2 days, and sitting in a car with this pain (I never itch, just burn) will drive me crazy. I am taking acidiophylus tablets, cacium citrate and on a low, actually no carb diet. It's been a month with this yeast and I know that if I don't cure it, it will become months ov vulvodynia pain. I am desperate for something I can do that doesn't require going to my gyno--leaving on Friday and I know he won't be able to see me. Besides, what is the point, I KNOW it's yeast.
CommentIs Vulvodynia the same thing as Lactobacillosis? Does it have anything to do with it? Please help. If not can you tell me a good website to go on Lactobacillosis? I would appreciate it? What are the classic symptoms of Vulvodynia? And what are the symptoms of Lactobacillosis? PLEASE HELP!!!!
CommentHello! I haven't contributed in a long time--just checking in on what has been helping ladies and what hasn't. I haven't been to a doctor in a year so I'm happy about that (that may seem like an odd thing to say but after you have played the runaround game you will understand). I have to say that it's not that I haven't felt some itching and discomfort in my vulva, but since I have started using Effexor 75 mg and Vagifem (an estrogen (estradiol) vaginal insert) I have been feeling pretty good. I actually have been seeing if I can wean myself off the Effexor because I have been gaining weight in the last six months and that may play a factor, however, I don't rely on my prescriptions alone. I also wet a bit of unbleached toilet paper when I am at home and wipe myself after I pee. I also mix a tiny bit of vaseline and an aloe-vera/witch hazel gel together and apply that after I wipe myself. I also eat plain yogurt and take an acidophilus tablet in the morning. I also douche right after my period with a mild vinegar douche and then I insert an acidophilus capsule in my vagina. I do this any time my discharge is *stringy* and watery. That has always meant a bacterial imbalance whenever I have had a culture done. A big no-no for me is letting my husband ejaculate inside of me. No doctor has ever suggested this, I just tested my husband's semen with a p.h. strip and it was way up there. So if you are suffering from bacterial infections you may want to consider asking your loved one to withdraw before he ejaculates. My symptoms are always worse when my period clears up. I am extremely regular, which I look upon as a good sign, but I don't have that brownish discharge after my period like I did before I developed this disorder. I'm pretty dry right after my period, but I am doing better in this aspect than four years ago. This nightmare began four years ago for me when I took a very strong 11-day course of keflex for a mild bladder infection. Something went wacky in my body. My period was just clearing up and I felt pain in my vulva. I examined myself and I had redness in the 4:00-8:00 position. Since then the inflamation has never gone away, it has actually spread. If I had the pinkish-red inflammed part of my vulva removed--it would be completely removed! So this goes to show we ladies do suffer from different symptoms and disorders--vulvodynia in my case means redness and sometimes itching. There is no pain on penetration. I would like to get my urine tested for oxalates before I begin using calcium citrate/oxiabsorb and try the low oxalate diet. I am a firm believer in tests. I had my hormones tested a year and a half ago and I was low in every single one. I have had two Great Smokie Lab stool analyses (spl?) done and I was high in candida (nizoral for three months cleared that up) in the first and strep b in the second. I have had many vaginal cultures done and I am usually high in e-coli or strep B. Well, this was never a problem before 4 years ago, but now it is. Maybe I will improve more with the extra boost of estrogen. I also wanted to say that it seems there are a lot more ladies reporting this disorder these days. I am glad we're speaking up about it. Sometimes I wonder if ladies always suffered from it, but in silence. It's hard for a disorder to appear in medical texts when the women are to mortified to talk about it. It really does make sense, don't you think? My mom wouldn't even tell me what a bidet (that water -washey thing found in some bathrooms) was when we saw one. I mean, really, I was eighteen at the time! :-) Anyways, I think in my case my vulvodynia is a form of auto-immune disease because I also suffer from environmental allergies and I have been experiencing some arthritic symptoms as well. But I really have come to a point in my life of acceptance and try not to shed many tears when I get fed up with my vulva not being a healthy pink. I really don't think this disorder can be ignored forever. There seems to be more and more cases of it and no young, unmarried woman should have to be afraid of intimacy and having children because of it. That is a reality for some of you and my gosh, my heart just aches for you. Best wishes to all and let's keep searching for answers!
CommentTo Donna: From my reading lactobacillosis is a kind of yeast which can cause itching of the vagina and is treatable with certain broad spectrum antibiotics. Vulvodynia is a term used to describe pain of the vagina that may be present with or without intercourse and symptoms which include one or a combination of the following, pain, burning, itching, tearing of the skin, rawness of the skin, recurrent urinary tract infections, yeast or bacterial infections, extreme tenderness of vaginal skin. I may have left some things out but all of these symptoms are treated on some level with different medications but the true causes and cures are unknown. Some women turn to surgery but from my readings here there is not much success, hormone therapies and a wide array of medications are used to treat specific symptoms but there too the success rate is not often good. If you are in the care of a doctor insist on a culture being done to identify the specific strain of yeast causing your discomfort. Is that why you mentioned lactobacillosis? Read this site so you are familiar with the problems these ladies suffer with and you will have a better idea of your own situation. Best of luck.
CommentJOANNE-try this site... http://www.gentlebirth.org/archives/vagInfections.html If you scroll down, there is an entire section on yeast infections. it talks about using hydrogen peroxide for a 'yeast wash'...maybe something you can try before your road trip. other women on this site use boric acid suppositories. i've never tried it. there is also something on that link called MEGADOPHILUS, it's a vaginal yeast suppository. i also have a hell of a time trying to rid myself of the yeast infections. luckily, the last time i had one, i was able to get away with monistat 3. amazing, huh? i usually have to get the prescription terazol 7. good luck. DONNA- here is a link for you to check out.... scroll down to the title 'the vaginal flora' and it talks about Lactobacillosis in depth. it's the best site i could find. i think i may try the betadine or hydrogen peroxide wash for my BV infections. i woke up this morning with a bladder infection and with every bladder infection i get, i also get a BV infectoin along with it. and then comes the yeast after taking a course of antibiotics for the bladder infection. i am calling my urologist tomorrow morning. he did a cysto on me this past april 26th, and said if i get another bladder infection within 6 weeks of surgery, to call him immediately and he will start me on medication for intercistial cystitis. go figure. but i CAN have sex again. that's the only good thing....having sex this past weekend gave me a bladder infection. i just can't win. i was doing good for so long. but my vestibulitis has almost disappeared. good luck to you all.
CommentDONNA- sorry, here is the link... http://www.multi-gyn.com/prevent1.html
Commentjoanne are you sure you have a yeast infection still? has it been diagnosed as one after all the stuff you have taken? you may be reacting to citrate, its not uncommon to have a reaction to it, if you are reacting to citrate you can take calcium carbonate instead. dont take anything else for yeast unless you know for sure you are still having the infection.
CommentIf you have Lactobacillosis you can douche with bicarbonate water. Baking soda in watera lady posted on www.vulvodyniasupport.com and she has this
CommentI am almost 100% sure it is yeast. At first I called in for perscription of diflucan--after 3 doses, I went in and my doctor took a culture for yeast and bacteria--confirmed it was yeast--that is when I took the 7 day tetrazol. The calcium citrate I have been taking for only about 5 days now. Besides, it is the classic yeast, white and clumpy without an ordor.
CommentI am almost 100% sure it is yeast. At first I called in for perscription of diflucan--after 3 doses, I went in and my doctor took a culture for yeast and bacteria--confirmed it was yeast--that is when I took the 7 day tetrazol. The calcium citrate I have been taking for only about 5 days now. Besides, it is the classic yeast, white and clumpy without an ordor.
CommentLactobacillosis is an overabundance of the good bacteria in the vagina. Do the complete OPPOSITE of the things you would do if you had a yeast infection. DON'T take a PROBIOTIC, DONT use yeast creams etc. This is also referred to as cytolytic vaginosis, also called "Doederlein cytolysis." Or CV You can douche with baking soda in distilled water but don't use a douche bag, use a bulb syringe that you would use to suck out a babys nose and you will have to fill it up a few times and squeeze gently, do it standing up preferrably. Or you can do a baking soda sitz bath, spread the vulva open and swish the water up inside then insert your fingers and swish the water around in there. This is the opposite of a yeast infection but you should not eat sugar because it will make it worse. Just make sure to have a diagnosis of CV before treating for it. No guessing!Heres part of 2 posts from someone who has this>The reccommended treatment of cytolitic vaginosis is douching with a sodium bicarbonate [baking soda] solution, 30 to 60 g if sodium bicarbonate in 1 L of warm water two to three times per week and then once or twice a week as needed. In patients who experience cyclic symptoms, prophylactic sodium bicarbonate douches 1 to 2 days before anticipated symptoms are reccommended. And another post>Lactobacillus is not a yeast, but has similar symptoms. My Dr's PA gave me a photocopy of the medical book's page on Cytolitic Vaginosis. Here is what it says: Cytolitic VaginosisAnother vaginosis from which other types of vaginitis should be differentiated is cytolitic vaginosis. This vaginosis was previously known as Doderlein's cytolysis but more recently has been further characterized by Cibley and Cibley (1991). It is a condition that is often misdiagnosed as other vaginal infections, particularly recurrent candida. The Typical patient is a woman referred for "recurrent candida" that has not been alleviated by multiple therapies.PathophysiologyThe pathogenesis of CV is unclear. It is hypothesized that overgrowth of Lactobacillusspp. results in an environment that is too acidic and produces the symptoms. However, further studies are needed to elucidate the cause. History and Physical ExaminationSypmtoms may be similar to those of candida vaginitis, including pruritis, dyspareunia, and a clumpy white discharge. The "typical" patient may have a "shopping bag full of partially used medications" that have failed. Some women not that their symptoms occur or worsen during the luteal phase of the menstrual cycle.Diagnostic TestsThe current diagnostic criteria are absence of trichomonas vaginitis, candida vaginitis, or bacterial vaginosis; increased vaginal discharge, which is usually white, frothey, or cheesy; a pH between 3.5 and 4.5 and an increased number of lactobacilli on a normal saline solution wet mount preparation; evidence of cytolosis; and a few polymorphonuclear cells. Culture would not be helpful asit would only reveal"normal vaginal flora"ManagementThe reccommended treatment of cytolitic vaginosis is douching with a sodium bicarbonate [baking soda] solution, 30 to 60 g if sodium bicarbonate in 1 L of warm water two to three times per week and then once or twice a week as needed. In patients who experience cyclic symptoms, prophylactic sodium bicarbonate douches 1 to 2 days before anticipated symptoms are reccommended. If you think this could apply to you, I would suggest printing this and taking to your Dr.
CommentIt's quite comforting to see that there may be another cause to my discomfort. My problems began when I lost my virginity. Unfortunately, my boyfriend was being unfaithful to me during the majority of our relationship and I contracted chlamydia from him. Along with chlamydia I had a yeast infection. I was treated for both and for about 3 weeks I was ok. I opted to stay with my boyfriend and try to salvage whatever was left of our relationship, we continued to be sexually active but I insisted on using protection. Even still with condoms each time we had sex, I got a yeast infection. This started in September...by January, I was completely frazzled. I then became disturbed by some information I'd read on recurring yeast infections being caused by HIV or diabetes. So, I went and got tested for HIV twice, that test came back negative. I had a pap smear and that as well came back normal. In February, intercourse nearly became impossible. It was painful, I managed to get through it but I was in excruciating pain. After that, I got another yeast infection. In March, intercourse again was nearly impossible, I experienced severe cramping, to the point that I had to stop and take advil to make it stop. I then started experiencing a burning sensation, unexplained. It happens mostly right before my period, and it ranges from unbearable to mild. The last couple of times, I've had to treat the stinging and sharp pains with hydrocortisone ointment. This is only a temporary fix, and I don't want to have to rely on this for the rest of my life. I've been tested for chlamydia and gonorrhea 6 times and they all come back negative. I've been tested for herpes, HPV, and HIV and everything comes back negative. I'm frustrated and tired of this irritation and I'm at my witt's end. My gynecologist thinks I'm crazy because I'm at the office atleast once every two weeks, and each time she checks me, everything is ok. I don't know what to do. Any suggestions?
CommentI've been having on and off pain since February. At first, I thought it was the onset of a bladder infection (now I wish it was), but then it went away. Since then, I've noticed the pain increases right before my period, and then goes away. Except for this month...the pain is getting more intense. I went to my doctor (actually a nurse practionner) and she didn't even listen to me when I was trying to explain where the pain is (which is right around my clitoris). She tested me for a bladder infection and a yeast infection - of course both came back negative - and she told me that I'm probably just irritated b/c of "a change in my laundry detergent". I was so upset, b/c now this week I'm in so much pain....and it's constant....stabbing and knifelike. What's most depressing to me is that I'm getting married next month...I don't understand why this is happening to me now....my fiance is very understanding, and is willing to help me with whatever methods I need to do to alleviate the pain. But I love him so much and don't want him to have deal with a wife who may not be able to have sex. Does anyone's pain ever go away on it's own? Or am I going to suffer from consistant pain for the rest of my life??? Luckily, I have an appointment with a doctor who specializes in vulvadynia, but it's not until July....way after the wedding...and the honeymoon....I'm happy to know that this is not all in my head, but very sad by the fact that no one's quite sure about what causes or how to treat it....I've had bouts with depression before and am nervous that this will bring me back to this point. But, I'm going to try what I've learned here, and maybe I'll be one of the lucky ones who feels better just with the change of diet....i hope.
CommentJanay,I feel for you because I went through the similar experience when I lost my virginity and couldn't understand why I kept getting yeast infections and why they woudln't go away. I too had numerous of tests for STD/HIV and so on. It is very, very unnerving and causes a great deal of stress. At that time, I had never heard of vulvodynia. You are lucky that you find this site, I found it 3 years ago when I had the terrible pain come back, again after intercourse (always using a condom). I think that the lubricants in condoms can cause my yeast. But like you, my yeast doesn't clear up easily, it just keeps lingering and of course that is when the mind plays tricks on you and you think you have something else and start the whole process of STD testing. Yes, I think my gynocoligist thought I was crazy...I changed doctors fast because I needed someone who understood me. I also found a vulvodynia specialist...something you need to do right away. And for your boyfriend...not to sound judgemental, but if he was cheating on you, you don't deserve that, dump him.
CommentTo June: I wish you relief from your pain and success with your efforts to get better. I do want to comment on marriage and illness. I think if you are honest with your future spouse then the decision becomes his, do not take that away from him. I say this because twenty two years ago just two months before I was going to get married I was hospitalized with severe intestinal blockages. I had two emergency surgeries and after three weeks in the hospital I had a good talk with my surgeon. I told him I was getting married and wanted to know what my life would be like. He told me I would be in pain a lot but would probably live a long time. It was hard for me to talk to my young wife to be but I did and after I told her what our life would be like I gave her the opportunity to back out. She stuck by me and I've been sick with my tummy on and off for all that time. We had three daughters, our share of sorrow and happiness. No one can guarantee their health that's why marriage vows include in sickness and in health. Time will ultimately prove whether or not love can overcome vulvodynia. Maybe your symptoms will lessen in severity, maybe you will be better and he will have a bout with illness. Stop torturing yourself, trust in your love for eachother and let life to run it's course. Have a great life.
CommentJUNE:___ I also have pain around my clitoris and only there. Which is a form of vulvodynia (called clitorodynia). Mine started years ago, after a yeast infection. I was stuck with this pain around my clitoris and all of the doctors I saw at the time told me nothing was wrong with me and to go home and relax!!! So I cried and cried as I'm sure you do! I have now found competent doctors and know a lot more about this strange condition! This sort of pain is generally neurological in origin, it seems. It has helped me a lot to do physio for pelvic floor muscles, to try to control the yeast, avoid tight clothes,wear white coton underwear, etc, etc. Applying an ice cube wrapped in a damp washcloth (cleaned without bleach and unscented laundry soap) also provides temporary relief.The good news is I generally go for years without pain but then somehow, it comes back. I consider it like a neuralgia, Some people get it on their faces or elsewhere, I get it on my clitoris!!! If I avoid triggerring the nerve, then, I'm OK for a long time. I have a 2 year old daughter and I'm pregnant with my second child, unfortunately going through a bad flare up at the moment probably due to the weight and pressure of the pregnancy on my pelvis and the increase discharge which is irritating my skin. Intercourse isn't a problem when I'm not going through a flare up. I just have to avoid rubbing the clitoris itself too much. (there's all sorts of ways to stimulate it indirectly!!) Also, tricyclic anti-depressants, in low doses, are believed to help with this type of neurological pain. I'm taking Elavil at the moment and it is helping. My husband is wonderful and supportive and sad that I have to go through this, as I am. As Frank says, marriage is about the good and the bad. This condition is part of me but not all of me! Write back if you want. Women with clitoral pain only aren't as common as women with vestibulitis pain but we're here!JANAY:____ I don't want to be judgemental either, but I guess I will be...If your boyfriend cheats on you, gives you chlamidia and makes you worry about HIV, I'm not sure he's the right one. I'm sure you deserve better!FRANK:____ Just a little correction in that vulvodynia isn't pain of the vagina but pain of the vulva. It seems to be frequently around the entry of the vagina but in some cases it is elsewhere on the vulva, as in my case, and it is still called vulvodynia.( just being picky about terminology!!)Dominique
CommentTo Dominique: Thanks for the correction and of course you are right. Best of luck with your new baby, hope things get better.
CommentHi everyone, I am just about to undergo a vestibulectomy and I would love to hear from anyone who has had this surgery. I am really unsure about what to expect and would be grateful for any information. Thanks do much!
CommentWell, it just go to show!! We all should be careful about self-diagnosing. I just came back from the doctor and I tested negative for yeast and for bacterial infection. I did however test positive for a slight Strep B infection. He told me that this is a normal bacteria and that we can treat it either with antibotics or leave in alone. He told me that treating it with antibotics can cause a bacterial infection or a yeast! Geeze, here goes the cycle again. He agreed, however that the discharge was exactly like yeast and took another culture. I opted to not take the antibotics until the result of this culture come back? So, what can anyone tell me about STREP B infection? Leave it alone? If you had it, did it cuase discharge and burning? I am at a loss once again!
CommentThanks, Dominque and Frank B. Both of your input really helped! Dominque - I'm glad to know that your pain comes and goes...I think last night I started to get panicky that it would never leave! Now, thinking back on my health, although the pain is right around the clitoris, there have definitely been times when intercourse has been painful. I always blamed it on a lack of lubrication, but now I'm wondering whether it's just part of this whole disorder. I'm going to try some of the methods I've learned on this site, and hopefully the doctor's appointment in July will help as well. I think just thought of having to deal with this chronic pain on top of the stress of the wedding plans (and my job happens to be particularly stressful right now, too), I just felt like it was all too overwhelming.
CommentThankyou all for your suggestions and support. I know that this guy is definitely not the one for me...but it's easier said than done to break up with him. I sit and I think about the pros and the cons of our relationship and the cons always outweigh the pros. I often wonder if I hadn't have had that experience with him, the STD, and the yeast infection, would I have ever developed this condition. That's the part I'm also confused about. Recently...around the beginning of April, yeast infections have not been a problem, but I still have a whitish discharge and random stinging, and burning. I don't have an STD and it's really starting to freak me out. I add more stress to my life because I con myself into believing that I have an STD when I don't. That's what I find to be most stressful, I worry myself. Can this condition be made worse by stress? I have read alot of the information about vulvodynia and my symptoms are not exactly the same, but similar. I get a burning or stinging sensation on the entire labia minora, but that can be relieved by hydrocortisone. Recently, I've been experiencing sharp stabbing like pains at random. At this point I'm tired of running back and forth to the doctor only to leave with no insight. I'm starting to get the feeling that I might be going crazy myself. There are just alot of unanswered questions that I have about this condition and I don't know who to go to for help, because my doctors are obviously not the source. Does anyone have any suggestions about a place in Michigan that offers treatment for this?
CommentHi, I'm 20-years-old and a student in Northern California. I have been having vuvlodynia symptoms on and off over the past year or so but lately they have been terribly painful and I usually try to abstain from intercourse with my boyfriend. I was recently finally diagnosed with Interstitial Cystitis and I was wondering does anyone know a good doctor in Northern California?? I am getting really desperate for answers and and I feel depressed about the whole situation. If anyone knows of any doctors or has any advice, it would be much appreciated, thanks.
CommentMy wife has had Vulvur Vestibulus for the past 8 years or so. My wife has no internet connection so I?ve been reading the various emails and sharing information with her. I can?t begin to tell you how much this has helped me to understand her problem as well as others out there. This may sound ridiculous but I?ve been looking for some common denominator that we have that others may have as well. In some of the emails individuals had indicated that their husbands have had or currently has athlete?s foot problems. I also have athlete?s foot but my wife and I also have eczema on our feet that has been described as non transmittable, however, I do find that odd that both of us have contacted this. This form of eczema that we have appears on our feet and hands as very small blisters that itch and burns at times. It seems to be controllable but can?t be eliminated, same with the athlete?s foot. Are there others out there that have the same condition that could be attributed to Vulvur Vestibulus?
CommentJANAYI live in Michigan and I go to Dr. Reed who works out of the Chelsea Family Center in Chelsea--it is part of U of Michigan hospital. She is wonderful. However, she is out for the next two weeks, but call and get an appointment as soon as possible. Gosh, I'm so glad I get the chance to help others as so many have helped me. If you need further info, e-mail me directly at ioannas@comcast.net, but please note, I will be on vacation starting tomorrow until June 1.Best of luck to you!!
CommentSMITHS - Vestiblulitis can be caused by skin conditions for some people, u can get eczema or other condtions in and around the vulva. These can be treated with steroid creams but for some people with another cause this can make the vestibulitis worse as the creams can cause irriatation and thinning of the skin. I'm very touched that you are trying to find help for you wife you may wish to talk to Frank B who is another man (the only man may i add, who we appreciate very much) who posts on this site he has a wife who suffers too and he can probably help you and give u a lot of advice froms a males perspective.JANAY- Many people find there pain gets worse with stress and i am one of them, its a vicous cycle and its hard to break but trying to relax and take things as they come helps me deal with the pain. Sharp pains at random sounds like vulvodynia as well vestibulitis, it can happen. Believe me you are not crazy, all the doctors thought it was in my head but i knew it was real pain! As for a doctor I cant help as i live in the UK but im sure someone may be able to give u advice, keep smiling, ul find something that will help u. Dont let the pain fight u and win, u have to fight the pain.
CommentTo Joanne: Being a parent I thought I knew about strep infections but there is a lot of information on the internet regarding what they call " group B strep ". Is that the same as strep b? If it is and I think it is there are all sorts of associations having to do with infants suffering from group B infection. One of the sites said we carry this bacteria in our genital, gastro and urinary tracts and it only becomes a problem when it enters the blood stream. Can you assume that what that found is something normal to find? I mean is it seroius enough to treat with antibiotics or is it the only thing they could think of to mention since doctors kind of run out ideas. I remember times when my wife would have a lot of grayish white discharge and we would wonder if it was yeast or was going to become an infection, I think it was just her body or vagina cleaning itself and was normal. Now the part that is of concern is the burning and other symptoms that made you believe it was something more serious. Am I right that you used several courses of diflucan, etc to try and rid yourself of the discharge? I'm guessing but could all the meds have caused a negative reaction? There was a time when my wife was using three or so different creams and after several weeks she just said no more I'm giving my body a break from all this stuff. She will use diflucan for a yeast infection and there is one med she uses for a urinary tract infection which knocks it right out but that's about it. I think most of the women here who suffer from the burning and yeast think if they take antibiotics things are going to get worse but there are certain infections and illnesses that you need help with. So you take the antibiotics and prepare for an infection of a different nature. I hope you and the doctors can figure out what is going on and more importantly what approach to take in treating it. Best of luck.
CommentJOANNE--I would be cautious w/taking antibiotics for Strep B. When my whole problem started the first infection I got was bacterial vaginosis. After taking antibiotics for that(FLAGYL) about 2 weeks later I had the same symptoms as before, which was mainly burning, and went to the Dr. again. He treated me antibiotics again, which I thought was for BV again but a couple years later when researching and looking through my medical records I found out that it was Strep B that showed up on the culture. As I was looking through more medical records after that time I seen it a few more times. It really upset me b/c I didn't know thats what I was being treated for. I remember them telling me they couldn't find anything under the microscope. I believe that for many of us Strep B can cause symptoms, it seems logical to me if it caused symptoms in out throats and in babies, then why wouldn't woman have vaginal symptoms from this if there is an overgrowth(many Drs say it doesn't cause symptoms). I would personally recommend boosting your immune system and taking lots of acidopholus first and see if that helps you before taking antibiotics. I believe the antibiotics that I was taking just allowed the Strep B to overgrow even more(wasn't the right kind?) along w/wiping out the friendly bacteria my body. The other upsetting thing is I believe I miscarried at that time because of the Strep B, they should have told me I had it. I have seen Dr. Reed as well, I thing she is nice but I didn't have much luck w/her. When I had a colposcopy there last year she couldn't understand why I started crying when she put the vinegar solution on me, I said b/c I have raw skin and it's burning me!, but she couldn't see what I was talking about.
CommentFRANK..thanks for the response and I, like your wife have come to the point where I say enough is enough--I need to give my body a rest and let it try to cure itself. What really ticked me off at the doctors today is that nobody called me from their office to give me the results of the culture taken literally 15 days ago. IF THEY SAW IT WASN'T YEAST, why the hell did they not call me and tell me to not take the terazol? I didn't ask that today because I was concentrating so hard on asking the important questions on STREP. He took another culture today and I will make sure I call them this time.KIM--I agree 100% that I don't want to take the antibiotics and in honesty, my doctor was not pushy to perscribe them and even told me that because I am so sensitive I will probably get a bacterial infection or a yeast infection. I'm sorry to hear about your experience with Dr. Reed, my initial visit to her was 3 years ago and at that time she was doing intense research on VV, her and her assistant were very kind and concerned but they also wanted to allow patients to do a biopsy--I did that--ouch! Well, I must say that I go to visit Dr. Reed in mid June and I can say that her assistant didn't seem as friendly to me this time while I was trying to get an appointment--I will let you know how it goes. Gosh, I thank you for your information and I don't even know you ladies (and Frank) but my heart bleeds for all you (me included) have gone through. Take care.
CommentOne thing I don't seem to have in common with a lot of women here is that I don't get yeast infections. I have had bladder infections, but none recently. I don't know if this should effect what supplements I take, since yeast doesn't seem to be my problem? I also notice that by the end of the day, the pain is much worse...i'm assuming it's b/c I'm tired and have been sitting for most of the day. Has yoga really helped anyone (relieving stress to help pain go away)? And what is "physio for the pelvic floor muscles"? Is this an excercise or something else?
CommentAbout stress...I read somewhere that the neurotransmitters released in the brain at times of stress and anxiety are the same as the ones released with pain. So although stress isn't the primary cause of the pain, it certainly contributes to it when it's already there. As someone said, a cycle sets in and it's hard to break it because this pain causes so much anxiety, but trying to relax, with yoga, breathing, hypnosis or whatever, helps. In my case, it is sometimes easier said than done, but I try!! It doesn't make the pain go away, but helps to keep it localized to one area instead of spreading to my whole vuvla and sometimes thighs. JUNE___ Physical therapy for the pelvic floor muscles is one of the many treatments suggested for various types of vulvodynia. The theory is that our pelvic floor muscles (the ones we use, for example, to stop urinating) are in spasm and are squeezing some of the nerves going to the vulva. By doing a series of exercises to retrain these muscles, they can learn to relax when needed and relieve the pressure on the nerves. Again, the more pain we feel, the more tension there is in those muscles, creating more pain, etc...There's all sorts of things written on this. You may want to look at the NVA site (National Vulvodynia Association)www.nva.org or at www.vulvodynia.com. These sites will give you general information on the various forms of vuvlodynia.My pain hasn't been too bad in the last 2-3 days. Probably a 5 instead of an 8 on a scale of ten. That helps. My head improves then and I'm a little happier:-)Good luck,Dominique
CommentAmber, I have had a vestibulectomy. I may not be the best person to reply to your post, but you asked. There are lots of factors here that would make a diff in your recovery. If you still have your ovaries and produce estrogen then your skin will most likely heal just fine and still stretch. I believe that is where some of my problems lie. Scar tissue can cause pain and tearing and shrinking of the opening if you don't have enough estrogen. Sometimes the irritated areas that are being removed reappear. No one case is the same. I myself would recommend anything else before surgery. It is so invasive and so final!! Like I said in a post earlier in the week, the Dr. that did my surgery took out too much skin and intercourse is impossible for me at this point, and that was done 11 years ago. (I also don't have any natural hormones either to make my skin elastic.) Good luck with your surgery. Just make sure you have done your homework. As for the surgery it self, it is uncomfortable but bareable right after surgery. Hopefully you will be one of the lucky ones that have positive results from it.
CommentI haven't posted in awhile. I suffer from both urethritis (inflammation of the urethera) and vestibulitis. I'm not sure which is causing which. This has been going on for almost 8 months now. I had at one point successfully treated the urethritis with antibiotics (levaquin 500). I was 100% painfree for about a month or so until I got another UTI. The vulvar pain slowly came back. I've had both a cystoscope and MRI done and according to the results there is nothing abnormal with my urethera. I thought maybe it is yeast (from all the antibiotics....even though I didn't have any discharge) and treated myself with monostat 3. The next time I had sex, it hurt even worse. My new thought is maybe it is Lactobacillus which I read about a few postings ago. My urine culture did come back positive for lactobacillus....which normally shouldn't be in urine even though it is part of the body's natural flora. I'm going to try a few things for the next few weeks, and I will be sure to post my results along the way. Any advice or input would be greatly appreciated. I will start today, and as of now it hurts terribly during and following sex for about 2 days then it subsides. Mostly the 9 to 3 oclock areas and a painscale of 7-8 (out of 10). We'll see if any of these things reduce the pain. 1. drink only water 2. fluox (prozac) 20 mg daily 3. estrace cream at night 4. baking soda (sodium bicarbonate) douche/wash every day (for the lactobacillus). 5. cranberry capsules for my bladder. 6. topical lidocaine for numbing before and after sexAny other ideas????
CommentHiUp until yesterday I didn?t have any physical evidence on my skin. Everything looked normal and perfect even though I had pain/burning all over my vulva/vestibule/vagina. Last night I used a un-petroleum jelly to help me with the discomfort and pain I get while/after urinating ( it also hurts/burns when I urinate). When I woke up this morning the left side of my vulva was inflamed (it was red, but didn?t hurt on touch). Also, I noticed two little circles on the left and the right side of my vaginal opening( in the vestibule) that hurt when touched. I washed the jelly off with Aveeno shower/bath natural colloidal oatmeal body wash(actually I washed myself with this two days in a row before I stated using the jelly so I don?t know if the irritation started from the jelly or the body wash). However, I washed the entire area, put 98% aloe Vera gel (clear, cooling gel) on the three red spots. I felt a little burning when I put the gel. Regardless, I put ice wrapped in a towel and I took a nap. When I woke up the big red in the vulva had disappeared but the two smaller ones didn?t. It hurts when I touch them and when I don?t. Do any of you have inflamed vulva/vestibule and if you do what do you do to reduce the pain/burning? The reason I am asking this is that I?ve heard that most of the time in vulvodynia patients the skin looks normal even though there is pain and burning. This jelly was supposed to improve my condition and not make it worse. Please help. Any tip would be helpfulThank you, Vesna
CommentThe pain can be with or without redness or swelling. Don't put anything on it for about a week. Don't wash there with anything either. Use only plain water from now on there. Wash your hair in the skin and try not to let soap run down and touch you there either. Shower not bathe. You won't smell if you don't use soap there, thats an old wives tale.
CommentVesna--Alot of commercial products marketed towards women really aren't things we should but on our vulvas or in our vaginas even though there are supposed to be for it. There are alot of chemicass and preservatives in products that we use for cleansing, etc that are harmful and irritating, ecspecially to people like us. I haven't use soap to clean there in 3 years. Also, if you have city water, get a squirt bottle to rinse with spring or distilled water instead. There is alot of chlorine(bleach) in city water which can be extremely irritating to us women. It's a pain in the butt, but it has helped me to not be as irritated or dry. A lady I worked w/tested her tap(city) water once and she said it had as much chlorine as her pool! Gross!
CommentAlso I forgot to add that many of us to have some type of hormonal issues, at least some symptoms of, which can be effected by the preservatives in commercial beauty product, lotions, shampoos, ect. They are the PARABEN preservatives like methyl paraben, propyl paraben, etc. If you look on just about anything we use on our bodies these preservatives are in there. The problem is these preservatives give off xenoestrogens, which basically mimics estrogen in our bodies. Our bodies then think that the body is producing enough estrogen from w/in and stops producing so much causing us to actually have estrogen deficiency. I have read alot of articles on this the past year and no longer have any products that have synthetic preservatives in them b/c of this problem, including makeup. I have to buy them at a health food store, but you have to read the labels there also b/c alot of organic products have them in there as well.
CommentSo many posts each day! I notice so many common threads and also so many differences. No wonder doctors have such a hard time with this. I'm beginning to think that each of our cases is due to a unique combination of factors that produces a unique disease that calls for a highly individualized treatment. Yes, my husband has athete's foot, I was once on a prolonged course of flagyl. I had a yeast infection that lasted for 10 years. I used a lot of monistat. I drank a lot of beer. I was emotionally abused as a child. I had a yeast infection the entire time my sexuality was developing, I took a job that has a lot of stress, I have had eczema, I ate a lot of starchy carbohydrates and sugar for year and years, I had surgery for endometriosis and lost 3/4 of each ovary. I began menopause at age 42. Most probably, it wasn't any one of these things that has caused my condition but rather a combination of all of them. That might be why there is so much contovery about treatments. We all have to keep searching and keep sharing our succeses and our failures. I have never used estrogen cream. Has anyone found relief with it? I ordered one of those red lights. For a long time I have felt in my heart that if I could expose myself to natural sunlight, I would be cured. I don't know why I think that. I have no logical reason. I am mostly pain free now. Still have some minor symptoms.
CommentNanci, I've gotten a lot of relief from Estrace cream. I'm menopausal, but don't use any other form of estrogen. The 24/7 burning I used to have is gone, but I still can't have intercourse b/c the pain during and after is excruciating. I also haven't found a Gyn. who's interested in treating Vulvodynia. Apparantly, it's more lucrative to deliver babies.'
CommentHas anyone read Roberta's entry from April 01, 2004? She had a steroid epidural and felt 100% better. I always kind of wondered if my case may not be nerve related. Does anyone know how to contact her or anyone else who has tried this procedure. Thanks
CommentMarnie - List your e-mail address here & I'll write to you re: steroid epidural
CommentRoberta----I was hoping you would be back! Please email me and let me know more about your case. I think the steroid epi might also be my answer! Thanks
CommentRoberta----I was hoping you would be back! Please email me and let me know more about your case. I think the steroid epi might also be my answer! Thanks
CommentRozlynn-----How long were you on the fluox before the vvs pain dramatically decreased? Also, does anyone know how long you need to use the estrace cream before you feel significant results? I only have burning pain during and after sex, but otherwise I'm fine. I'm just hoping something helps me to get at least 50% better. I've only been on the fluox and estrace for 4 days now. I was hoping to feel less pain in a week or two, but perhaps it will take more like a month.
CommentRozlynn-----How long were you on the fluox before the vvs pain dramatically decreased? Also, does anyone know how long you need to use the estrace cream before you feel significant results? I only have burning pain during and after sex, but otherwise I'm fine. I'm just hoping something helps me to get at least 50% better. I've only been on the fluox and estrace for 4 days now. I was hoping to feel less pain in a week or two, but perhaps it will take more like a month.
CommentMarnie- I was using the fluox. for about two weeks before my pain was tolerable.... i used the fluox. for a total of one month and then i felt so much better that i discontinued my use. I'm 100% as far as the vestibulitis goes. It's GONE! but i can't seem to control my infections.
CommentThanks for the vulvodynia info. Take care of your <a href="http://www.penisbuilder.com/labiaparadise">labia minora & majora</a> :)
CommentHas anyone here ever tested their urine ph and had it too acidic. I was at the health food store yesterday and bough some ph strips. I was thinking of trying to make it more neutral to see if it helps w/my burning. My pH had been between 5 and 6, more often 5 though. I have found that it's ideal to have our pH between 6.5 adn 7.5 from what I have read. It's seems like it could help some burning symptoms, just curious if anyone has ever tried.
CommentRozlynn----When you say "infections" are you referring to UTI's?? I'm getting a ton of those recently too. I've had 5 in the last 7 months!!! And bad ones too. Bactrim doesn't even work anymore and I have to use Levaquin 700. It seems like 1 in 4 times that I have sex, I get a bad UTI. I went to a Urologist last month and had some tests done (cysto and MRI) which came back negative for anything. We have no idea what is causing this. I HAD vvs years ago and it totally disappeared with the vaginal birth of my daughter. I'm wondering if the epidural desensitized the nerve endings. Are you on any meds for your urinary tract??? Candi mentioned something about a product called D-mannose that helps a lot of people with recurrent UTI's.
CommentSHANNON---What were your pain symptoms when you started ART? I am going to give it a try, made an appointment for Wednesday. I think it will help some of my symptoms, at the very least.
CommentMarnie- when i say 'infections' i'm referring to UTI's, bacterial vaginosis, and yeast. i have the yeast under control though. it seems like everytime i get a bladder infection, a bv infection is right there with it and vice versa. like the two go together or something. and like you, it also seems as though 1 in 4 times of having sex, i get a horrible bladder infection. i also had a cysto done and everything showed normal, except for the fact that i have a tiny bladder. BUT the doctor said if i get another bladder infection within 6 weeks of the cysto, to call him right away (which i did!) and he'll start me on meds for intersistial cystitis. maybe you have that too. seems as though our symptoms are the same. i'm taking a drug called elmiron (i think) for the intersistial cystitis. they said it takes about a month before it starts to work. we'll see. and yes, i ordered that d-mannose last wednesday. i haven't got it yet...should be here any day now. i'm very curious to see if it will help me or not. so.........i'm waiting for it!! maybe it'll come in the mail today. oh, i'm also taking cranberry supplements to help my bladder fight off infections.
CommentRozlynn---Sounds similar to my experience, except for the bv and yeast. Keep me posted on your results with the d-mannose and the bladder medication. Too bad it takes an entire month to kick in. I'm on my 5th day of the fluox and still feel a little light headed, but at least the nausea and headaches are gone. How do you get a diagnosis for IC? I'm curious as how the therapy will work for Shannon and Kim B. That too sounds interesting if nerves are involved. Roberta has been keeping me posted with her epidural trials and it really sounds like it works for her. I'll give the fluox and estrace cream about 2 months to show improvement or I'll have to find something else to try.
CommentMarnie- my urologist diagnosed me with IC. i guess if you keep getting unexplained bladder infections and have burning/tenderness in you bladder/urethra, there is no other explanation but to be diagnosed with intersistial cystitis. i also notice that anything i drink other than water, irritates the hell out of my bladder. so i drink water, all day, every day. i'll let you know about the d-mannose, and good luck with your nerve/spinal stuff. different things work for different people in different ways. i was thinking about something too....maybe you had a pinched nerve or something and then when you gave vaginal birth, the nerve was pushed out of the way or was rolled over or moved or something, therefore eliminating your pain. it's just a far-fetched guess.
CommentKimB: I haven't seen the Chiro yet. I was supposed to go last week but due to a hell of a week (grandfather dying, relationship issues, parking fines etc.) I had to re-schedule for this Friday. I've had this 4 years next month and my symptoms have changed over time. Mine started with a hardcore infection that eventually calmed down on the outside although sex still hurt. At first, it only hurt during penetration and then didn't hurt at all. About a year later, after diagnosis, I started to burn a little for some of the time as well as experiencing pain with sex. Then over time, sitting became a big problem which was difficult for me as I was a student up til last December and an office worker (like most of us). I eventually developed secondary vaginismus which I've got pretty bad now. If we attempt sex (which is VERY rare), we have to wait for my muscles to unclamp themselves first. In the past few months at work, I've ended up precariously balancing on the very front of my seat because by 3pm, I've been in agony from sitting so long. The burning has mostly been under control since I cut out coffee, spinach, tomatoes and started taking cal mag citrate, acidophilus bifidus, ox absorb, olive leaf, epo and black cohosh. Right now the entrance to my vagina is very tender as I have vestibulitis. I often get an ache in the muscles surrounding my vulva as well but I haven't heard anyone else report this. SO, I'm going to give this Chiropractic thing a try and hope to report something positive soon! The epidural thing seems to relate to it being a nerve problem too no?
CommentHi Buddies,I was suffering from the acute pain and inflammation. At last now I got relief of it. The generic Celebrex was available on the netpharmaworld.com site. I thank to them for launching such a fabulous product.With Best Regards,james
CommentSHANNON--I got pregnant in 4/00 and toward the end of my pregnancy I was in such horrible pain in the vaginal area and low back. After I had my daughter the pain kept getting worse, I finally went to a chiropractor when my daughter was 9 months old. After a couple of adjusments it helped me alot. I was able to wear jeans w/o being in tears, but the intercourse part of it did not improve really w/that treatment. I will say it made sitting in general at least 90% better. I do office work as well and some days are still pretty uncomfortable, but I currently go to the chiro about 2x's a week. You probably will be helped by chiro treatments, at least to an extent. I think we have a pretty good instinct on what will and what will not work for us in general. I'll let you know how my first ART treatment works, but it will probably take a few to notice anything. I had never heard of it before you brought it up. I think it will help me b/c I have alot of muscle pain in my butt, low back, and abdominal region, which I think are pretty much tense muscles due to the pain, and then it started that cycle--pain, clench, more pain......
CommentWhat is ART and how does it help VVS? Do they put their fingers in the vagina or touch the vulva???
CommentHi,I've never contributed before but have read many of the guest books on and off. Dr. Glazer himself diagnosed my condition when he was in England for which I am eternally grateful because many doctors did not believe in my pain. I then went to a detrmatologist and found that steroid cream and antihistimines did work a little. I came to Oxford and found a brilliant doctor who put me on tricyclics, there was a little improvement, I can now have sex although it is often uncomfortable and never pain free (a clever balancing act between levels of pain and pleaure). It has recently taken a down turn and pain becomes more regular and controlling, I often get cystitus symptoms and i wish I could cut parts of my body out! I have recently found something which has helped me, it isn't a cure and it isn't a solution but it has helped me get through the day: Vagisil. I never tried it before thinking it to just be a thrush cream but it contains lignocaine an anesthetic (sp.?!) which numbs the area really quickly. I know this may not help in all cases but it may be worth a try just to get through the really bad days. I hope it does help someone.
CommentJENNY - ART stands for Active Release Technique. I found out about it after searching past guestbooks. I will re-post the post I found below. You might also like to checkout this website: http://search.atomz.com/search/?sp-a=sp10018c2a&sp-q=active+release+technique - KIMB - Thanks for the positive words re: Chiropractic Care. I'm definitely looking forward to it and am glad to hear it's given you some relief.. HERE'S THE ART POST AGAIN - "Greetings. AFTER SUFFERING FROM VV FOR 1 1/2 YEARS I HAVE BEEN PAIN FREE FOR 5 MONTHS - THIS TREATMENT MAY HELP YOU TOO. It is called Active Release Technique (ACT for short) and is practised by specialized chiropractors. What's on your list?: high acid diets (our caffeine culture), antibiotics, childbirth, tailbone/back injury, the pill, yeast, toxic soaps & detergents, tampons, lack of excersize, stress, stress and more stress - and many women carry stress in the pelvic area....SO, the muscles in the pelvic area can contract so tightly that they pinch all the nerves feeding into the bladder, uterus, vulva. A.C.T. is a deep massage-like procedure that loosens the muscles to unpinch the nerves. AFTER SIX 10 MINUTE SESSIONS MY PAIN WAS SIGNIFICANTLY REDUCED. AFTER 2 MONTHS OF BI-WEEKLY SESSIONS I WAS PAIN FREE. I continue to be treated once per week for "maintenance". My Chiropractor has also treated 2 women I know with the same success. There is a Centre in Colorado Springs which will refer you to qualified A.C.T. Chiropractors or Phsyiotherapists in your area. (They MUST by credentialized in spinal work.) The number of the Centre is (719) 473-7000. Hope this information helps. Mary. Note to Melissa: yes, I too suffered from Roseaca and scalp problems which are also side effects of high stress. Since starting ACT treatment my scalp is now back to normal and the Roseaca has slowed considerably.PS I have been seeing a wonderful PT for over a year now -Holly Herman. My hip is 'rotated' - the guilty culprit of this wicked vulvodynia. I recently visited a chiropractor who is 'amazed' at how 'tight' my back, lower back, abdomen muscles, thigh, hamstring..they should not be.....this is all connected to your pelvis, girls."
CommentPS. JENNY - I don't think they touch your vulva at all (I don't think they're qualified to). Chiropractors mainly manipulate the spine as far as am I'm aware.
CommentI went to my firtst ART treatment yesterday. I think it really will help me. My low back, hips, butt, thight and abdominals are all EXTREMELY tight. It's pretty painful to any touch. It's going to hurt the first few times, I'm sure, until the muscles start to release. The Dr told me she can totally see why I could be having pain in the vaginal region. I am excited to start seeing results, but I'm sure it will take a while. And no they don't need to touch your vagina. Just b/c thats where your symptom is doesn't mean its where the source of the problem. If you have muscle or nerve issues, it's going to stem from your spinal alignment first, causing the nerves/muscles to become inflamed, ect. and of course all of our pelvic region is connected to our lumbar spine/tailbone. Just a note, my Dr was explaining something to me and she mentioned that connective tissue, unlike muscle, takes longer to heal because it doesn't have a large blood supply like muscle. Thats why is takes longer to heal, and of course our vagina is made up of connective tissue. That explains why it takes us so long to heal and feel better in that area, in alot of cases. Actually ART reminds me of physical therapy, but its more aggressive treatment. Of course its different but there are simularities. I would definately choose ART over PT though if you have muscle/nerve issues. I've had both and PT didn't really do anything for me(I am NOT talking about PT for our vaginas)
CommentKIMB: That's so exciting! I'm off to my first appointment in less than hour so will definitely jump back on the computer to post the outcome.
CommentKimB and Shannon----Please keep posting your results. I am very excited about what you are trying. If you have a good outcome I may give it a try as well. My husband is a doctor of Osteopathic Medicine so I'm trying to convince him to take a course in ART or have him come to some appointments with me so he can try it on me at home. I was also wondering what your exact symptoms are and what have you tried and failed so far? My pain is only with intercourse around the entire vaginal opening, but hurts the most on the upper half of the "clock". I'm also have some urethera discomfort and inflammation as well as recurrent UTI's. I'd appreciate any info or feedback. Thanks and good luck with those sessions girls!!!!!!!!!!!
CommentThank you Shannon and Kim B. What exactly did they do to you at your appointment and how did you find the person to do the ART? Was he/she farmiliar with VVS?Thanks for the information!
CommentHello everyone. I would like some of your experienced opinions. I have been suffering with vaginal burning for a few years now. I have a history of bladder infections and yeast infections (Only 1 confirmed by MD, but have had more that home treatment cured). It seems like I keep getting the symptoms of a yeast infection (burning, discharge, painful intercourse) but the last time I was at my doctor because of it, there were no signs of an infection! I was quite surprised, because I'm in pain practically every day. I have been closely monitoring my pain now for a while and have found some patterns/triggers. It seems I start getting the symptoms (including a burning pain in my vaginal area, white discharge, and sometimes itching) 5 days after my period is over. The burning persists throughout the rest of the month, and seems to be agrivated by contact (sitting, tight cloths, sex, anything). When I get my period the symptoms are gone and the cycle starts all over again. I have found that there are some days when I will be burning all day, so when I get home If I take my underware off and wear loose-fitting pants the pain goes away almost immediately.Does it sound like I have Vulvodynia to you?
CommentI just got back from the Chiro's and feel very confident about this path. I told her that I was taking vitamins and had done some PT in the past but she said that while both those things could help, they aren't going to give optimum results if your foundation isn't solid. And mine isn't. There were definite problems with my lower back so I had some X-Rays done and will commence therapy next week. My lower back problems have only come on in the past year or so. The Chiro said that even though there may be problems (subluxations is the technical term) with my spine, that it made sense that I didn't get necessarily get the back pain first. The back pain may now be flaring up because the problem still hasn't been corrected. Eg. Pain is the body's way of communicating that there's something wrong. If one symptom arises and is not resolved, you can be sure that you'll eventually get another one. Stay tuned.
CommentMARNIE - I posted my symptoms on the 25th of May.
CommentJENNY P: I found my Chiropractor after one of her assistants visited my local gym. She doesn't practice 'ART' exactly, but said that all Chiropractors practice some sort of 'release' technique - releasing is what they do. I just heard about ART from an old guestbook. My Chiro hadn't heard of vvs (surprise, surprise!) but I'll go out on a limb and say that it shouldn't be a problem because they understand how problems in any area on the body, can be caused by problems with the spine. And, it gave me the chance to educate one more person about the problem. It gets exhausting sometimes but if we all told one person a week.....
CommentTo do this release thing, do they do some sort of massage or is it adjustments like what is usually done at a chiros office? And does this only work for VVS if you have nerve problems or back pain? How often do you have to go and have this done? Sorry for all the questions.I hope this works for you!!!
CommentJenni P--I would just do an online search on ART and read about what it is. That's how I found a practitioner that does it, one of the sites on my search had a ART provider search and I entered my zip code, it brought up the practitioners in my area closest to my zip code and emailed the nearest one to me. Like I said in one of my recent posts, ART is simular to physical therapy combined with massage/release techniques.You can only "adjust" your spine so it is not like a chiropractic adjustment. The best way to educate and understand something that you want to know about our "problem" is to research and learn for yourself. That is what I have done for every single treatment I have came across and tried. Online searches are great for that b/c you can just put in a key word and almost always find the info/answer that you needed. If you don't have the education behind what you are trying to get answers for you are going to have a tougher time finding a treatment that will help you. I stopped relying on Drs, etc, a long time ago for this reason, half the time they don't know what they are talking about. I knew that I had muscle issues going on, and I have also had low back/tailbone issues, so I knew that ART was a form of treatment that made sense for me. But is you have never been evaluated for muscle/spine issues, you never know it it could be part of the problem or not. Just a note, my problems all started the same way most of ours do, w/infection and antibiotic use, etc. I believe our the way our bodies respond to abuse(medication, etc) and neglect(not paying attention to what our bodies are saying) is getting us into the muscle problems. Like I said before I have extreme tightness in my entire lower body, which all are connected to the pelvic/vaginal areas, no wonder I have such pain. Honestly I dont know how long it has been there, in so many places, I have only notice in the last six months, but if I would have paid attention sooner I may not have had to go to such extent to correct my problem.
CommentHello everyone,I wanted to add my story to the guestbook as someone who has suffered from vulvodynia (more specifically VVS) for a long time, but who (for now) has largely recovered. When I used to read the guestbooks it used to make me very sad as there seemed to be so few stories of women recovering from this thing. I think there may be more recoveries than we think- perhaps it's just that many people, when they are getting better, don't feel the need to come back to the website any more. Anyway, this is a story of hope for all you women in despair out there.I developed my vulvodynia around 10 years ago, after taking several course of Flagyl. I went through all the stuff everyone else has been through- people dismissing my condition, negative cultures, biopsies which showed nothing specific, changing my diet in various ways, boyfriends not understanding why I didn't want to have sex with them any more, etc, etc. I would always have the vestibular soreness, together with shooting pains, itching, so on and so forth. I took to wearing baggy pants and had a three and a half year relationship with a fantastic, understanding guy with whom I had sex perhaps twice and eventually lost my passion for, largely, I think, because of my condition. Eventually I became resigned to the fact that I would never get better and never be able to have a normal sexual relationship.I cannot say that there is any one thing in particular that has led to me getting better. However, there are several things that I have realized. For me, the pain of vulvodynia was due to two things- firstly, the hypersensitivity and soreness of my vestibular area and secondly, the the tension that developed in my pelvic floor muscles as a result of this soreness. When I tried to have sex, my nervousness and inability to relax also, of course, contributed to the pain. I discovered the problems with my pelvic floor muscles by visiting a physiotherapist who specialized in that area. She worked on trigger points in the muscles- wow! was that painful but it also made me realize that the trigger points were where a lot of the pain was coming from, not the vulva itself- hence, just because I had pain there didn't mean the pain would be made worse by having sex. In fact, as I found out, if I could relax having sex could sometimes make the pain better. However- of course, there is still the original problem with the soreness of my vestibule. This, I find is connected to various things. As other people have mentioned, it appears to have a connection to digestive troubles- if I have a bad stomach then my vulvodynia is worse, too. I am not really sure how this works. I suspect that I may be sensitive to some spices and so one. A friend of mine recently also pointed out some connection of the stomach to the vagus nerve which means that allergies get worse if you have stomach trouble. It also seems like, despite constantly changing detergents over the course of many years, I have finally found one that doesn't bother me. It is a 'Free and Clear' one, I think it is made by 'Earthsense', it has enzymes in it which I always tried to avoid but they don't seem to bother me. Finally, recovering from vulvodynia involves a positive feedback loop- the better you feel, the less you focus on it, the less stressed you are, and the better you get.So in the past six months or so I have been really able to enjoy sex, mostly normally. Getting to this stage has been a gradual process over several years. That's not to say I can keep going for hours without getting sore, or that it doesn't often hurt a little, but the enjoyment generally out weighs all that. I do have 'flare ups', generally when I'm tried or stressed or change my diet, but these generally clam down after a week or a few days. Generally, I think of myself as 'recovered' , and funnily enough this makes it easier to talk to other people about it, too.There is a corollary to all this. While I was really suffering and unable to have sex, I had two boyfriends who stuck by me for 2 and 3 years until I eventually split up with them. My most recent boyfriend, with whom I was able to have a normal relationship and with whom, of course, I wanted to get physical with a lot to make up for all of my lost years, lost interest in having sex with me within a month and finally split with me because he'd 'lost his passion' for me. Ironic, hey? Anyway, I hope my story injects a small beacon of hope into the guestbooks.Vicky
CommentVicky - thanks for sharing your story. You mentioned changing your diet - did you do the low-oxalate diet? I've just been reviewing the diet, and it really seems unhealthy. Like Atkins, which I don't agree with either. Like I've mentioned before, I've never had a yeast infection, and very rarely get bladder infections - which seems to be such a common theme with everyone else - I don't understand why I'm getting this. In the last several months that the really acute pain has been present, I have noticed that it is tied closely to getting my period. Does anyone else have this issue too??? I'm curious about ART. I have actually noticed a consistent pain in the middle of my spine for the last 8 months. It doesn't hurt on its own, but if I touch my spine in that area, it almost feels like a bruise. And it's always there...
CommentJennyP: I pretty much back up what KimB has said. We're not experts on this treatment because we've only just discovered it ourselves. I've only seen my Chiropractor once and will go back next week after she's assessed my X-Rays so, I'm not sure how long, or how often treatment will be needed. But I don't figure on getting quick results. I wish! I'd urge you to research this further for yourself if you're interested. Find a Chiropractor in your area and go talk it over with them. What I like most about this strategy is that it's all about getting to the root of the problem....before pills, before vitamins, before pt, before surgery. I'll certainly keep you all informed of my progress. Good luck Jenny.
CommentJUNE--You mentioned that you have pain in your spinal area that doesn't really hurt untill its touched and it feels like a bruise--that is exactly what my pain is like. I all along my tailbone, in my butt, hips, thighs and abdominals. Thats why I said I really didn't realize how messed up I was until she started pushing on all these areas. When I had another ART treatment yesterday, my Dr was working on the muscle that is just external from the vagina, on the inside of my thigh. That is where it is the most painful. It really hurts when she pushes in on that area(even though she isn't really pushing very hard). What she does is has me lie on my back, she pushes on the trigger points in the inner thigh/vaginal area, and she is always right on where my tight spots are, the she has me lift my knee up towards the ceiling then slowly drop my knee out towards the side while keeping my foot centered over my pelvic area. This really stretches the muscle in that area to help release it. She repeats this about 5-10 times. It hurts alot, but I know it will get better w/repeated treatments. She does the same kind of thing for other areas like in my tailbone area, etc the positions and stretches are just different. I really think this is something that could help you as well since you described exactly what my pain is as well. I am really sore today from all the work done near the vaginal area, but its the kind of sore you would get like after working out too hard, etc, not the same kind of pain I normally have. By the way my pain is worse on my right side, even though it hurts on both sides. When my Dr had me lie on my stomach and lift my leg toward the ceiling as high as I could go she asked me if it hurt, I told her it didn't hurt but I felt like a struggled more to lift my right leg. She said it had nothing to do w/muscle strength, but because my nerves/muscles are inflamed/entrapped they aren't working as efficiently. It really makes sense. What a relief. SHANNON--Thanks for making me aware of this treatment, I think this will probably be my last step in my many many treatments that I have tried! THANKS!
CommentKIMB: You're so welcome. I think we've got a moral obligation to help each other out. I would urge other women to search past guestbooks too because you never know what little gems you'll find. I've gone through quite a few books and pasted all the 'success' stories into a word document which I read when I think this thing has beaten me. I don't expect this treatment or any other to be my be-all and end-all anymore (I wish I weren't so cynical but I know you all relate), but I know it's going to help relieve at least some of my symptoms.
CommentKimB-I tried testing my urine with pH paper. I can't really give you any numbers because I took the paper from school and couldn't take the whole pack with the numbers and colors on it but I remember from chemistry lab what the colors should be. The piece I dipped in water was blue (neutral), the one I dipped in ammonia was white (basic) and the one I dipped in vinegar was red (acidic). The pH paper that I dipped in my urine looked exactly the same as the one I dipped in pure vinegar. So now I am on the low oxalate diet and I avoid anything that has any kind of acid in it. pH between 5 and 6 is not that bad , as a matter of fact it is normal, since normal values range from 4.6-8.00. If you want to increase the pH of your urine (that is to make it more basic) you should eat more dairy products and citrus fruits or vegetables. A diet high in meat products or cranberries can decrease urine pH (that is, make it more acidic). Drugs that can decrease urine pH include: ammonium chloride, chlorothiazide diuretics, and methenamine mandelate.Drugs that can increase urine pH include: acetazolamide, potassium citrate, and sodium bicarbonate. Aside from eating diary and drinking milk, I also dissolve 1 to 2 tbs of baking soda which is basically sodium bicarbonate in a glass of worm water and I drink it. I do this twice a day. I'll do the test in a couple of weeks to see if anything changed. I hope this helps.Vesna
CommentI just wanted to repond to JS who was kind enough to reply to my question about whether or not Lichen Schlerosis is hormonally induced. This was back in Feb 2004. I am SURE that it is hormonally induced as you had suggested. I am trying to figure it all out myself since even the specialists in my area are of no help. I am determined to get well. Thanks JS for listening and responding. I'm sorry it has taken me so long to get back to you.Take care and everyone get well!!!!, Sharon
CommentI have had vulvodynia for 2 years. I was diagnosed right away but followed it up with a million cultures and tests, all normal. i am bipolar so they all think its in my head, but its not. most of the time i try desperately to forget the pain, its not always bad, but almost always burning, burning feet too and it hurts to sit a lot. i lost a job over it, got fired because i had to go to the docs for an emergency. i tried elavil (didnt work) estrogen cream (gave me weird colors on my skin) and just had nerve ablation under anesthesia in which i also got LEEP done. Now the pain is back., i put myself through hell for the ablation exam (biggedt fear is docs) and all i can think about is that its not worth it. im 24 and will never have a normal sex life again. im so hopeless right now, ive given up dating (which isnt easy when u r fat anyway) and any hope of finding somoene again.
CommentI have been suffering approx. 2 yrs with similair symptoms. I have been to different doctors with no resolution, and when I have continued to be persistent with the same doctor, she continues to tell me nothing is wrong. The symptoms are very real and effect my everyday life, I feel very frustrated and don't know where to start. As time goes on this becomes more and more emotional for me. If anyone has any suggestions on what my next step should be, please forward your advice to me. Thank you.
CommentLORETTA & SUFFERING. Most, if not all, of the women posting and reading here will understand exactly how you feel. I do. It saddens me to hear that your doctors are saying it's all in your head but that's a sad fact of this problem - many people still do not know about it. My advice would be to take as much control for your own health as you can. This thing has taught me that I can't expect to go to the doctor for an instant cure-all everytime something happens to me - which we've been taught to do in our society. I'd advise you to do what I have done. Read this guestbook from start to finish and then go back and read old guestbooks. Copy and paste every 'success' story you read (and they are out there) into a word document and start trying some of the methods that have worked for other women. Cry, weep, get the feelings out because that is an essential part of healing but get up and give this thing everything you've got when you feel strong again. And, TALK TO FRIENDS, FAMILY ETC. ABOUT YOUR PROBLEM. This thing will only stay unknown if we allow it to. If we don't raise awareness, who will?
CommentHi EveryoneI was wondering if anybody would be kind enough to give me some advice. I am a vulvodynia sufferer who got better through biofeedback 2 1/2 years ago (following 3 years of pain). However, following a horrible attack of Thrush, I got ill again (3 months ago). I've been doing biofeedback now for just over 2 months and have noticed no improvement at all. Looking back at when I recovered last time, I was better within 4 months although I wasn't in nearly so much pain as I am now. In your experience, when should I notice improvement by? Also, I'm having problems with exercise - everything seems to irritate my pain. I thought about swimming and have found a pool which uses less chlorine although chlorine is present - does anyone swim in chlorine regularly and have any tips to stop the irritiation? Or can anyone recommend any low impact exercise which is OK with a bad back?Finally, what tests are available to test candida? I have had the various tests where swabs have been taken from my vagina but are there other blood tests? Please let me know.Thanks so much for any advice you are able to give and best of luck to all of you suffering at the moment. Lots of loveFay
CommentLORETTA- find a new doctor! i have been to about 5 or 6 doctors over the course of three years, the two times i've been struck with vestibulitis and not until feb. of this year was a new doctor able to diagnose me. my husband and i were doing our own research on the subject as well. we did a search on the internet for 'painful intercourse' and went from there....there are tons of articles and possible causes to our many conditions... the doctors are only human and we can't be angry at them for not knowing. in my opinion, this is more of a specialized topic... meaning, you can't expect to go to a gynecologist to be diagnosed for skin cancer or something like that... you'd need to go to a specialist... and i think that's what the medical field is lacking at this point, are any specialist that work/study vulvodynia and the many forms of it. you need to find a new doctor who is patient and compassionate. i was also told 'it's in your head'...that angered me to no end!! if i was in excruciating pain while attempting intercourse when i wasn't before, then something is wrong! all of my tests came back negative. they told me i didn't have any infections so it must be in my imagination. until i got pregnant this past october, then i was struck with infection after infection, leading to the pre-term birth of my sweet baby who didn't survive. my husband and i started doing our own research and took our information to the doctor. give the doctor something to work with. luckily, my new doctor diagnosed me with vestibulitis (which i'm happy to say is gone at this point!!!) without us having to bring any information to his attention. after he said the word 'vulvar vestibulitis' my husband and i went crazy on internet searches and stuff....leading me to this website where i found all of you wonderful women who helped me to heal and enjoy sex with my husband once again. i would also take shannon's advice and read this guestbook from start to finish. there is alot of valuable information here that lead me on the road to recovery. and i think GIA might be healing also... i haven't seen her post in awhile. GIA, if you're still here, write us an update!!! :-) CANDI is also doing well, not 100%, but she is keeping such an open mind about things to try and read up on to help her heal. SO....take the time to read the past postings. i'm sure you'll find them very helpful. take care.
CommentI have been suffering from vestibular vulvadynia for two years this month. I have been to several doctors. The first said I needed to use more lubrication. I saw one doctor who said it was all in my head because I looked normal and my blood work was normal. I went to a sex thereapist for several sessions before I finally saw a specialist. On my first visit, he diagnosed me with the condition. It has made me more hopeful that I will get better. However, it has made me more depressed because I have taken a complete back-slide in the past two months. Today, reading the guestbook, has given me hope again. I continue to see a specialist every 3-4 weeks, so on my next visit I am going to ask about some of the other methods. Thanks to those who shared their troubles and to Dr. Glazer who has this wonderful website.
CommentFay-Have you considered soing Yoga? Many places have special sessions designed for back problems. The reason I say this is because some of us seem to get worse with stress. I do because stress causes more yeast in my system. Yoga is a wonderful stress reliever for me. It helped me to stop drinking when it was very difficult for me to say no. Just a thought. N
CommentShannon and Kim B-------Have you been back to your Chiro lately? How is the therapy going? Any improvement? Also, I was wondering if your x-rays showed anything interesting?? I'm seriously considering giving it a try. Thanks!
CommentRozlynn------I've now been on the fluox for 10 days and have had sex twice. My pain level began at about an 8 and is now down to about a 4! In fact, most of my vaginal pain is gone and it's mostly my urethera that is still the trouble. It is still very inflamed and sore to the touch. But, at least sex is possible!!!!!! Thank you for your info!!!!!
CommentIsn't that Fluox the same as Prozac? I think I remember reading that here. How much of this stuff are you all taking? I might give that a try. If I used Elavil and it didn't work, will the other not work or should I try it? My gynacologist sugested an antidepressant but since the Elavil didn't work from the other doctor I didn't take anything else. It seems like most of our doctors suggest Elavil for some reason.
CommentHello to everyone on this wonderful message board. I have got so much help and encouragement from reading your messages. Now it?s time for me to give something back and let you know how I have become 90% well again.I am 28 and have been suffering with vestibulitis, and more recently vulvodynia, since my early teens. Over the years I must have tried every treatment available: diflucan, antihistamines, oestrogen ointment, xylocaine anaesthetic gel, anti-fungals, homeopathy, kinesiology, acupuncture, electro-crystal therapy, hypnotherapy, low oxalate and other diets, Chinese herbs?..you name it, I have tried it! A year ago, I even resorted to surgery, which didn?t help. I was literally at my wit?s end and, though I have always tried to stay positive, I was getting depressed.My symptoms had worsened over the last few years to include not only pain at the vagina entrance, but red, burning skin around the urethra and clitoris and frequent anal tears. The pain was constant and so bad at times that I used to dread going to the toilet and sometimes could hardly sit down.A couple of months ago, I stumbled across these guestbooks. I read a message from someone (I can?t remember who) who said that she thought the cause was some kind of yeast/bacterial infection, as yet unidentified by the medics. She had the same symptoms as me and her theory seemed to make sense, since the numerous tests I have had over the years have all come back clear.I came across an anti-Candida diet on Karen Tripp?s website: www.geocities.com/HotSprings/4966/indx.orig.htm. Although I didn?t have any of the other symptoms of Candida, I felt I had to try it, since I was determined not to poison my body with any more drugs. Karen?s advice is different from others, as she says the diet alone won?t work; you have to take a supplement called formula SF722 as well. Don?t ask me what?s in it, but this stuff actually kills the bacteria while the diet cuts off its food source. So I went on the diet ? it was tricky as I?m vegetarian as well so there was not much left I could eat! - and started taking the supplement (two capsules with meals, three times a day). The capsules are expensive (approx. ?25 sterling for one month?s supply) but they are well worth it. Karen?s site has a list of places you can buy them. I also went on grapefruit seed extract, acidophilus and high strength vitamin B. The diet made me feel great and I have now changed my eating habits for good!When people find something that helps them, it often seems to be a combination of several things and it has been the same with me. I had become so stressed about my condition that several people advised me to try meditation. At first I ignored this, as I didn?t see how it could possibly help a physical condition, but I got so desperate I thought I would give it a go. I found two great books ? The Power of Intention by Wayne Dyer and Manifesto by the Barefoot Doctor. They explain how meditation and positive thought can get you the things you want in life, including good health! I have been meditating now for a couple of months and working on changing my thought patterns to eliminate all negative thoughts. I am totally astounded that not only am I healthy again, but I am calmer and happier and amazing changes are occurring in all other areas of my life too! I am now more or less pain free :) I have just started to reintroduce ?banned? foods again; this week I have eaten chocolate with no adverse effects ? hurray! Sorry my story has been so long. I hope it will be of use at least to some of you. Stay positive!With love,Immy
CommentHi this im my first time writing in the guest book. Its been about 2 years since my symptoms started. i had been taking antibiotics and yeast cream. i was also told i had a bladder infection (more antibiotics) that was when my burning, itching on the left lower side of my vulva started. i went to the gyno and they told me i had vaginosis. so i took the medication for vaginosis and it was the same i went back to the gyno and they have me a 7 day treatment instead of the 3 day, still the same. i can even feel the burning in my butt on the left side also. i am currently taking singular, amitriptyline, cysta Q for IC, nitroglyerin cream for the pain or before sex, testosterone cream and estrace estrogen cream. I feel the same. My vagina is burning 24/7 for the last 2 years. i wonder if it has something to to w/ antibiotic, yeast cream use or vaginosis. i am at my wits end with this . i live i n las vegas na di don't know of any doctors familiar with this. i had to drive to la for a 45 minute appointment and i still feel the same. Iam so frustrated not knowing what to do next. and i cant get my mind of of my burning, itching vagina. Any suggestions?!!!!!!
CommentHi,I'm back from what I thought was going to be an awful road trip, but I survived sitting in a car for hours. Do any of you drive yourself crazy denying that you have Vulvodynia? I'm going around and around thinking I have a STD--could it be herpes, warts, HPV...and so on. 3 years ago I had all the tests done for STD's then have not been sexually active since then, until 2 months ago when I had protected sex...and here we go, the burning is so intense at times and it seems to travel from my vagina to my anus. I feel it is raw and am constantly checking for bumps, tears or redness...nothing. I've gone through this 2 times before...the first time, 10 years ago it took about 1 year before I was better...I didn't do anything because I had never heard of vulvodynia. The last time was 3 years ago and it cleared up in about 3 months...the only thing I did was take Elavil and that only for about 2 weeks cause I couldn't stand the way it made me feel. However, again, does anyone drive themselves crazy thinking that you have an STD? It keeps me up at night and I don't know if the stress is causing this mild depression or the vulvodynia is. It's a vicious circle isn't it? Next week I am going to my vulvodynia specialist and ask her to do all STD tests--I think once I rule that out 100%, I will start to relax and that will help my symptoms. I'm not saying it is that simple, but don't you think that stress plays a big role on the symptoms of vulvodynia?
CommentTo Joanne: I'm sure plenty of the women here have asked the same question regarding STD's. Twenty one years ago when we were first married my wife started getting yeast infections and when I questioned the medicine here gyn gave her the doctor insinuated I had something to hide. I have only been with one other woman prior to marrying my wife. No complaining, just pointing out that although it is understandable to think STD it is something else causing the burning, itching, tearing and pain. Last year at the request of a new gyno I went to my urologist to get checked out. He took blood, checked me for signs of genital warts and then swabed the inside of my penis, that hurt! Everything came back negative. I think some of my wife's problem with tearing is hormonal but she was checked and that's not it either. We had sex a couple of times last week and she got a bladder infection. I have good hygene, so does she, I don't get what is causing this. Maybe my semen has a bacteria making her sick. You can go crazy trying to figure whats going on. We all need real scientists working on this. Experts who can say for sure what the common bonds are and what is causing the symptoms. Best of luck.
CommentJENNY P.- yes, Fluoxetine is the same as Prozac...it's just a generic brand. i've used it twice...scroll back through this guestbook and you'll find many of my postings regarding the Fluox. i was taking 20 mg. once daily. i have never used elavil, so i can't comment on that....but from reading other's posts, it appears that elavil has been a bit harsh for most women here. MARNIE!!!!! Oh, my GOD!!! You are having sex after only 10 days on the Fluox!! That's wonderful!!! I think that's about how long i was taking the Fluox before i had painfree sex with the hubby!!! I am so happy for you!!!! You are so very welcome for the advice/info!!! Yeah!!!! oh, p.s. i have trouble with my urethrea also... i was recently diagnosed with intersistial cystitis. i'm now on meds for that and all i drink is water...it seems to calm the burning in my urethera. but my vestibulitis is completely gone and i'm no longer on the fluox. I am just so happy you found your cure! I'm sending hugs to you!!! IMMY- great story...i'm so glad to hear the success stories going on here!!! it keeps most on a positive note!!! JOANNE- glad you're back...i've been thinking about ya! i've been through the samet thing you are when i had my first battle (and second battle) of vestibulitis. i had the doctors test me for everything....just to ease my mind. then i went from there, knowing that i was squeaky clean. i hope your specialist doctor can give you some great advice. please don't forget to post after your appt. I also think that the stress AND depression all play a factor in vulvodynia...they all go together. ridding myself of stress played a huge role in my healing. and the depression in my case, caused the stress, and the stress caused the depression, and the vestibulitis caused the stress and depression......yes, it's a very vicious cycle. but there are more positive stories lately it seems. are we on to something?? i'm so glad i'm healed. it is a world of difference and i'm glad to be of help to anyone and everyone who needs it! take care ladies!
CommentI HATE HAVING THIS ITS SO LIMITIMNG I AM 36 YRS OLD I WNTD KIDS, A FAMILY , THE WORST PART I HATE PEOPLE THAT DI I WANT WHAT THEY HAVE MY HUSBAND DEALS WITH IT THE BEST HE CAN I AM SICK FEELING LIKE I AM NOT ENOUGH
CommentMARNIE - Great to hear that you've had success with the fluox/prozac. I can't believe that stuff works so fast! The fact that Rozlynn is completely pain free blows my little mind. :) So I went to the Chiropractor on Thursday to see what my X-rays showed. And boy, did they show some problems. I'm uneven. One of my hips is higher than the other - I could even faintly see the outline of my buttocks on the X-rays and my right buttock was about an inch and a half higher than the left! Apparently, my pelvis is starting to 'twist'. Eg. one side is starting to lean back, and the other is starting to lean forward. Plus my vertebrae are twisted in the hot spot - eg. the vertebrae that affect sexual/reproductive organs etc. My back pain has also increased in the past couple of months so I definitely know I've got some problems. The Chiro recommended two visits per week for the next 6 weeks so we'll just have to see what happens. But I DEFINTIELY feel very into this whole path. The Chiro has a very holistic and spiritual approach. I'd never been to see a Chiro before and always thought treatments were rough and painful but so far it's only been utterly relaxing. And, I also like the fact that I'm getting to the CORE of things. The ABSOLUTE core. Even if it doesn't get rid of all my symptoms, I'll at least know that my spine and nervous system is fully functioning and I can then re-try other methods knowing that they've got a better chance to work. Who knows though? Maybe the treatment will work on it's own? I'm also having some fantastic counselling at the moment which is addressing sexuality issues etc. More 'core' work. Stay tuned ladies. I won't leave you wondering.
CommentFor anyone interested in Active Release Technique, here are a list of practitioners throughout the world. http://www.activerelease.com/staff.asp - I don't think ART is the only Chiropractic technique that will work for this (every practitioner has their 'preferred' technique), it's just one that worked for a woman on a previous guestbook.
CommentI have not had vulvodynia to too long (3-4 years), but I have had bouts of bladder infections and non-infections that felt like infections for about 10 years and herpes for 30. (How many other women have herpes-is this common to this problem.) I am in menopause and it seems like I only have a problem when i get my period. FIrst I get my period, then I get a herpes breakout, then if I am not careful a yeast infection. If I have sex before it gets completely cleared up, they the vulvodynia gets bad and then what feels like a bladder infection, but is not always an actual infection. Sometimes I can get it under control along the way. My urologist is not really very helpful, but he did give me samples of a product called "Prelief" which is calcium glycerophosphate and magnesium stearate. It supposedly takes the acid out of food. I think it does help if I eat spicy stuff. Recently I went 3 months without having my period and I was almost pain free. Both from the bladder thing and vulvar pain. Which does not make sense from the hormone point of view. It seems like most of the women that have this problem are fairly young. I seem to be the oldest at 52. What about older women? To the younger ones-do your mothers have this? Have they ever heard about it? What about grandmothers? If this is new then I think we can look at environmental issues-additives, pesticides, synthetic clothing. Is there a real clearing house for this problem where we can start putting together all this info and maybe come up with a cause or a probable cause? I am terrified that my daughter might end up with this. I did not have to deal with this until my late 40's and had 3 children. I can not imagine dealing with it as a young women. What really helps me is just ALWAYS taking acidophilis (sp?) and I also take garlic tablets twice a day. I teach aerobics and I do notice that staying in damp spandex can make it worse. A lot of women I know seem to have developed an allergy to spandex. I hope we can all get together and find a cure or find a way to stop this from happening to other women!
CommentTaking St. Johns wart has been known to keep herpes outbreaks from happening and L-Lysine helps keep them away too.
CommentLESLIE,When you have your herpes outbreak, how long do they usually last. I don't think I have herpes, I have no blisters, bumps ect...but I'm concerned I may have the type that don't have these symptoms. But, I have had the burning in the vulva and anus for about 2 months now. If it were herpes, don't they usually heal in about 5-6 days?
CommentTo Leslie: I am interested in finding out your experience with herpes. Since you have had it for so long you must have a lot of knowledge with this. I read on the internet that it is very common not to get blisters and that 1 in 4 women have it. Those statistics are staggering. Were you tested from a culture of a blister or blood work? And if this problem was herpes wouln't it go away at some point? I was tested for herpes type 1 and/or 2 thru blood work. It came back high around 20. Negative is less than 2. But, I was retested when I was having another really bad episode and my antibody level did not increase at all so herpes was basically ruled out. I was told that it just means that I was exposed to it or even because of chicken pox. I would appreciate any info. thanks.
CommentI have pretty much decided that I am tired of doing the low oxalate diet. I have doing it for 6 months and I feel like it should be showing some kind of results. I honestly feel like I did better on the sugar free diet for yeast problems. Since I have started the low oxalate diet I almost feel like the burning got a little bit worse but its hard to remember, I do know that I have not gotten any better on the low ox diet. It's really frustrating. I don't know if I need to be more patient or what. Does anybody think I should give it another 6 months before I quit? I felt I ate alot healthier before I started this diet anyway. I don't like not being able to have whole grains and nuts, etc. It sucks. I have gained almost 10 pounds since I have started the diet. On the low yeast/sugar diet I felt better and I think I am going back down that path. Sometimes I just cant handle the stess of this problem I am so sick of dealing w/it. I just want a normal life. Instead of thinking about sex every 10 seconds like most people, I think about my burning crotch every 10 seconds. I hate how I have to think about what I eat, if it will make me feel worse and when I am burning badly what the hell caused it. I tired of my husband having to go through this, I want to have more children and cant b/c its to painful to have sex let alone go through pregnancy this way. It's just not fair. I wish I could talk to peole close to me about how upsetting this problem is but I feel like I'm being annoying. My husband Im sure has heard enough. I guess that's why we have these online support groups, b/c we all know what it feels like to go through this. On another note, my ART Dr. thinks I have a sciatic nerve issue b/c all of the muscles that cause me pain and are inflamed stem off of the sciatic nerve, which also has the pudendal nerve come off of it. She is really working w/me on financial arrangements and is very interested in helping me out. She had never heard of vulvodynia herself until I emailed her asking me to help. I think it going to be a couple of months before I start to see some symptom relief because I am so messed up. We'll see.
CommentKIM B- i tried the low ox diet and had no success. basically i cut out sugar from my diet and with the other vitamins and supplements i'm on, i'm healed completely from my vestibulitis. i still take the vitamins and supplements and i'm still not eating any sugar. i constantly drink water too. water, water, water. good luck.
CommentVERY NICEEEEEEEEEEEE
CommentRozlynn- How long were you on the no-sugar diet before you noticed an improvement? I don't think the low oxalate diet is helping me either. Thanks!!!
CommentThis may be old news for some of you who have been on this site for awhile, but Dr. Reed in MI did some extensive research, see attached site: www.med.umich.edu/fp/grants/reed/vulvodynia/vulvodynia.htmlIf I am reading her results correctly, she doesn't seem to think that yeast or HPV are the main causes of vulvodynia, her research seems to lean more towards nerve and lower back problems...I know, not a breakthrough newsflash for many, but from all the reading I have done, I tend to feel and agree that HPV shouldn't cause so much pain. Anyway, I thought that the site may be able to help someone in MI in search of a Dr. I have an appointment with her this coming Wednesday and haven't seen her in 3 years, I'm interested to see what she will recomment/perscribe after 3 years of research. I will post the outcome...really, it helps me a lot knowing that I am being heard and I thank all of you from the bottom of my heart.
CommentKIMB: I'm sorry to hear you're feeling down. My advice to you would be counselling, counselling, counselling. The stress this illness places on us is enormous and shouldn't be ignored because whenever we suppress our feelings they wait for us. I'm having counselling right now and find it incredibly helpful and comforting to talk through things with a professional. I couldn't recommend it enough.
CommentROZLYNN--I feel I was doing alot better on the no sugar diet. I actually had sex a few times, when I started the low oxalate diet I kind of kicked the sugar free diet and noticed some burning to come back. It's really discouraging b/c I paid the $350 for the oxalate test and it does show that I have high oxalate in my urine but I guess I one of those people the diet will not work for, figures. I am actually looking foward to the sugar free diet again for me it was alot easier and I can have sugar free chocolate!! I think the ART treatments I am getting will help me and I am also going to do acupuncture starting tomorrow I know it it partially nerve problems for me. I want to do acupuncture mainly to help w/inflammation. I actually have done acupunture for my back problems in the past. I was having constant muscle spasms and chiropratic alone wasnt helping, after I did the acupunture 3 times(for my back) the muscle spasms calmed down and I didn't even have to do chiro anymore(at the time). I don't know why I didn't think of this sooner, duh. After my ART treatment on Friday, it actually made me flare worse, I started getting the radiating pain down my butt and into my groin and upper thigh. My Dr said sometimes people have to work on getting the imflammation down some before the ART will benefit b/c otherwise you just aggrevate the nerves/muscles w/treatment. She sometimes has patients take anti-inflammatories, etc. SHANNON--Thank you for your advise, I just started my period so I a little emotional. I will look into getting some counseling. Thanks.
CommentLESLIE-Since you asked about age, I am 45 and have had problems with my vulva since I was 18. First it was chronic yeast infections (cultured) for 10 years and then itching and burning with no obvious infection. Vulvodynia is a general term and I believe it is used to describe several different categories of vulvar pain. Some of us respond to a low oxolate diet, some to biofeedback and some to an anti-yeast diet or anti fungal medications. You seem to respond to some of the same treatments as I do so it is possible that you have too much yeast in your sysem or that your have developed a hypersenitivity to yeast. The only way I can feel good is to follow a very low carb and no sugar or flour diet. Keeping my stress level down is also helpful. For this I do yoga and have cut my working hours down from sixty to about 35. I don't dare drink alcohol (or eat sugar) because it causes an immediate reaction of intense itching. I insert boric acid in a gel-cap in my vagina whenever I start to feel itchy or burny. (this really helps and is very cheap to do but kind of a pain in the #*&%) Well worth the effort, though. I also take or eat a lot of garlic and take oral acidopholus. I drink kyo-green for intestinal health and b vitamins. I also get bad during my period. I tried the prelief pills quite extensively but didn't get any relief from them. Steriods didn't help at all eithor. There was a long period of time when I didn't know my vulvodynia was yeast related when I felt despondent because I couldn't find any symptomatic or long term relief. I have, over the years, figured out what to do for myself and I'm really feeling good, now. I found a new salve called chickweed that helps me when I get raw feeling after sex. It is very cooling. If anyone wants the website info on the salve I will post it. Just ask. It doesn't contain any alcohol which is a big no-no for me. I tried this once before when my vulvodynia was worse and it didn't help but this time I can feel a difference. Anti-fungal medicines have a huge effect on me. First I get sick (from yeast die-off) then my vulva strarts feeling much better then it starts to go back to feeling yucky again. I have found that it is better for me just to try to keep the yeast in check with diet, natural supplements and stress release techniques. I did acupunture for a long while and it helped a bit but not proportionate to the cost involved. The boric acid has been the most effective (and the cheapest by far) treatment yet. Hope this helps. Stay strong. Gotta go. N
CommentLESLIE-Since you asked about age, I am 45 and have had problems with my vulva since I was 18. First it was chronic yeast infections (cultured) for 10 years and then itching and burning with no obvious infection. Vulvodynia is a general term and I believe it is used to describe several different categories of vulvar pain. Some of us respond to a low oxolate diet, some to biofeedback and some to an anti-yeast diet or anti fungal medications. You seem to respond to some of the same treatments as I do so it is possible that you have too much yeast in your sysem or that your have developed a hypersenitivity to yeast. The only way I can feel good is to follow a very low carb and no sugar or flour diet. Keeping my stress level down is also helpful. For this I do yoga and have cut my working hours down from sixty to about 35. I don't dare drink alcohol (or eat sugar) because it causes an immediate reaction of intense itching. I insert boric acid in a gel-cap in my vagina whenever I start to feel itchy or burny. (this really helps and is very cheap to do but kind of a pain in the #*&%) Well worth the effort, though. I also take or eat a lot of garlic and take oral acidopholus. I drink kyo-green for intestinal health and b vitamins. I also get bad during my period. I tried the |