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CommentWelcome to the 25th vulvodynia guestbook hosted by www.vulvodynia.com I appreciate your continued participation in the site and hope it is a productive and helpful experience for all who participate. Your website host Howard Glazer Ph.D.
CommentI was treated for a year for a yeast infection. Finally referred to a very good skin specialist and found an answer.
CommentI have been reading the guestbook for the past couple of months and have written in a couple of times. I have found all of the entries very informative and helpful. I have been dealing with vulvodynia for the past 8 years and have been searching and searching for some relief. I have read some previous entries from others who have consulted with Wendy Fellows, who suffered from vulvodynia herself and now is pain free. She helps many people to live a pain free life. After trying several medications and having almost weekly appointments with different doctors, I decided to contact Wendy. She was very nice and extremely knowledgeable about vulvodynia. She answered all of my questions and offered advice on nutrition as well as supplements. I had so many questions about what supplements to take, when to take them and how much. Also, I didn't know which foods were OK to eat. Unfortunately, my doctors did not offer any advice in these areas. They were very quick to mask the pain with different medications. I wanted to find a long term solution, which is why I decided to contact wendy. I started taking the supplements and following the diet tips this week so I will let you know how it goes. Wendy has offered me a new sense of hope that I will someday beat this thing. She was very inspiring. You can learn more about Wendy at www.vulvadyniahelp.com I will let you know how it goes. My heart goes out to everyone who is dealing with this.
CommentLiz, I can totally understand your frustration. I too have been plagued with fears that my boyfriend will leave me or cheat on me because we can't have sex. We have only had intercourse a few times this past year, and each time ended up with me in tears. I really liked what Sarah, and also KP said, in recent posts - that intercourse is only a very small part of sexual expression, and that there are a lot of other ways to be intimate. My boyfriend and I have to be creative, although I rarely have a sex drive because I am always afraid everything will hurt. Believe me, though, I can relate to those fears. Thanks also to everyone who offered me support last week when I was upset over having a bad flare. I am feeling better, although not as good as I was for about a month. I have gone to 2 physical therapy sessions, so we'll see how it goes. It's still hard for me to comprehend that muscle problems can lead to external stinging, burning, etc. I just hope that it helps!
CommentTo All: I received an email today which started. Hi Frank, I just read your email on the Vulvodynia.com guestbook. Like your wife, I also have Vulvodynia - but I no longer suffer from symptoms. I read the rest of the letter and did visit the site mentioned. My opinion is that some women who suffer some symptoms ov vulvodynia "may" benefit from some of the information and products offered. I still find it cruel and misleading to say "How would you like to be painfree?" when there is no cause or cure as of yet. Who would not want to be pain free? Whatever caused the recurrent tear to my wife's vulva has not been helped by estrogen cremes and I am sure nothing offered on this site will be any different. Those of you suffering with pain possibly caused by nerve damage or trauma probably wil not be relieved by a low oxalate diet and supplements. I don't like the wording and message but best of luck to those of you who have received this email and decide to give their products a try.
CommentThanks Heidi - it is nice to know that someone is thinking of me. Sometimes I just feel so alone and despterate and hopeless. Just wondering - how long to people generally stay on each dose of elavil/endep before they increase their dose. My recollection of the first time i was on it it was something like 5 days.
CommentHeidi--thanks for your message. I'd love to get the name and phone number of your doctor at the pain clinic. Please feel free to email me at my address. I could also send you my telephone number once you email me if that's easier. Thanks so much! .
CommentHi everyone. My GYN just suggested that I try Vagifem tablets rather than Estrace cream because he feels that often the cream irritates the skin even worse because of chemicals in the base of the cream. Has anyone used Vagifem tablets with successful results? My main problems are burning sensation & irritation after sex and urination. Thanks! .
CommentStacy--yes, I used vagifem, but unfortunately with no results. on the up side, the vagifem did not do much harm... For all you Effexor users--I'm trying to start up Effexor right now, as I know my nerves are inflammed, and Cymbalta helped me in the past. I took a 25 mg pill and had a tough time...nausea, insomnia, hot flashes...I know these are all supposedly temporary...I was wondering how anyone coped with this, what dosages were therapeutic, and how long it took to kick in? thanks...
CommentFor Sarah who posted Feb 14 2006 (luckygirl email address): You mentioned you were tested for allergies etc. through Dr Metzger's office. I'm just starting getting these tests done under Dr Metzger's care (by distance - I'm in the UK). Can you give an update on how the anti-allergy treatments have helped + other treatments you undertook as a result of the test you had done? I would appreciate it. Thanks. Helen
CommentHi ladies! I had today steroid /lidocaine shots to painful aria of vulva. I don't feel any better yet. If somebody did this kind of shots : how long it shoud take to start feel better ? Thanks Marina.
CommentSo glad to see this site! I hope to write more. I have endometriosis, and recurrent yeast infections (more in the past than now).
CommentI know this may sound strange but do any of you use colgate toothpaste, proactiv or hand soap with triclosan? I 'm just trying to put the pieces of the puzzle together. I changed my toothpaste about five months ago because of mouth ulcers. No more mouth ulcers, but now I have the burning sensation and reddness you describe. I've been to the Dr everything is "fine." I have done a little research on Triclosan and found out that it has been band in other countries due to side affects. So look at your labels ladies and tell me what you think?
CommentI FOUND A CURE FOR MY vulvar discomfort/pain which I'd been having for 9 months, symptoms from burning to stabbing. I got a clear bill of health by my OB. I decided to look into more natural remedies than antifungal creams. I came accross this amazing cream called Tetrasil. It's a natural cream (silver). Boy it took my pain away in 14 days!!! I never thought I would be healthy again. Please try it, it's well worth it, costs around $25 per tube (the tubes are small, I would suggest you get 3). Check their website: www.tetrasil.com. Check their testimonials. It works for a whole range of skin conditions. Good luck to you all! Anne
CommentAnne, that product sounds too good to be true. Are you able to have painfree sex now? Pardon me for being skeptical, but I hope you're not just posting this b/c you're trying to sell this product to women who are desperate to try anything for pain relief.
CommentHi there, I am posting this again hoping to find someone who was seeing Dr. Thomason in Milwaukee WI. Its been a while since I contributed to the guestbook, but if anyone was around in 2001-2002 I posted quite a bit back then. For those of you who remember me I have been seeing Dr. Jessica Thomason in Milwaukee WI. Thanks to her treatments I have been about 90% pain free for several years now. I underwent a compleate vulvar vestibulectomy and then PT. I now maintain with Estrace cream and occasional Temovate and Vagifem if needed. Unfortunatly Dr. Thomason retired this year and I am looking for another specialist (not an obgyn that has a little experience with VVS) to replace her and help maintain my good health in the area. Unfortunatly I just do not trust a regular Gyn to treat me, especially with infections. I am willing to travel a bit if necessary. Has anyone here been seeing Dr. T and if so, have you found a replacement doctor? Let me know if you have. You may email me at christina_bunny@hotmail.com. I live in MN in the Twin Cities area and am willing to travel 8 hours or even a bit more for a specialist, so a doctor in MN, WI or even in IL will be fine if they specialize in VVS. Thank you! Christina Bunny
CommentTO KP - I began Effexor recently and have also had a hard time w/ side effects on the 25 mg pill. However, I've found that by taking half the dose, just by cutting the pill in half, and then gradually increasing it - about every five days - I can basically avoid the nausea, etc. I would take half in the morning, half in the evening...then in five days, take 25 in the morning, half in the evening...in another five days, take 25 in the morning and 25 at night (depending on what dose you and your doctor are aiming for - obviously, you should talk to your doctor about whether s/he wants you taking 50mg a day or just 25, etc). Also, drink plenty of water. I haven't yet experienced much improvement of my VV, but it may be too soon to tell. Hope this helps - good luck!
CommentI know this may sound strange but do any of you ladies use cologate total, proactive or hand soap with Triclosan in it? Five months ago I changes my toothpaste because I had mouth ulcers. No more mouth ulcers, just the burning and reddness you all have described. I went to the Dr. all test were "fine". So I have been doing a little research, as I'm sure you all have, but this stuff is in alot of things we use everyday. It is a pesticide and has been band in other countries such the UK. I was just wondering what some of you thought. I stopped uses the toothpaste the reddness is better. Let me know. God bless.
CommentThis message is for anne@yahoo.com. I recently sent you a e-mail and it was returned. I am interested in the Tetrasil that you believe to be a miracle cream for your vulva problem. I noticed that the cream is only topical. How do you use this and how often? I would like to give it a try and would appreciate you letting me know how to get started. Thanks
CommentHello all. Some of you may know me, some of you may not. I haven't posted in a while. I have months and months of good days due to my diet. But anyhow, I still click on this site almost daily to read the post. Years ago when I first developed this horrible disease, some of us had talked about emailing Oprah Winfrey and question that she discuss Vulvodynia as a topic for one of her shows. Many of us (back then 2001 or so) had done so but she has never responded to us. I watch Oprah just about every day and til this day, she has never done a topic about this disease to help bring awareness to it. So today I ask you all to try emailing the Tyra Banks Show. I watch her everyday as well and she has some serious topics that women can relate to and they discuss a lot of female issues. So I just email her at www.tyrabanks@studiofanmail.com in hopes that she will talk about Vulvodynia. I will encourage all of you out there to do the same. Tyra is always on her show talking about how she LOVES to eat and I think that this will be a show idea topic that she wouldn't mind having on her show. So please do so ladies. It doesn't hurt to bring it to her attention. We all know that we all need a cure real soon so it doesn't hurt to try to get as much help as we can get. When I emailed her, I requested that she goes to this web site and read some of the guestbook stories so she can have an idea of what we women are going through. I also told her about the Vulva Pain Foundation and how donations can be sent there to help find a cure. Please do this for US ladies.
CommentTo Lynn, I remember that time when Oprah laughed at the mention of the word and how some of us wrote to her show. I will think of something to write to Tyra and who knows maybe it will catch their interest. Too bad for all concerned including women who are suffering and don't even have a name for their pain, Oprah with her audience might have been a great help but she just doesn't have it in her. Thanks for the suggestion.
CommentI am trying all night to get into the chat room. First I had to register with yahoo. That was fine, but I can't get into the chat room. It talks about all sexual toys, etc, not the vulvodynia support group. Please help me with this.
CommentOprah, seriously, is an idiot. I don't know how that woman can brag about being a Christian, but have no intention of marrying the man she shares a bed with. I am so tired of her celebrity-chasing. Tyra is also annoying. Have you thought about Dr Drew Pinsky, or other such hosts? Start small. My local news had a segment today about how anti-depressants help with hot flashes, more so than soy isoflavones. I will try to think about how to get some more publicity. oprah could also help the millions of women with endo, but I don't think she's ever addressed that either. She needs Kelly Preston to come on and say she wants to help with this cause
CommentI personally don't like Oprah. I just enjoy hearing about the topics discussed. Oh no, I don't really watch any other talk show. When I went to NY to see Dr Glazier back in Feb. I asked him if there were any celebrities that he has seen as patients and he said there are a couple but of course he did not tell me their names. It will help so much if who ever those celebrities are would help bring awareness and or help the VPF with finding a cure by making a generous donation. Anyhow, it is really sad that not too many people are informed. I know when I first found out what it was, It took me about 6 months, then I went to the very expensive Mayo Clinic, they gave me a name but could not tell me what caused it. You all, all my sisters has helped me conquar this disease. The Dr.s don't know much! We have to do our own research, find our own diagnosis as to what the causes are. I know with me, I have leaky gut, low acidolpholus, all that causes food allergies, recurrent yeast infections, high oxolate sensetivities, wheat, sugar and gluten sensitivities.. I mean it's a mess. So I am a 32 year old black woman with 2 kids and is VERY THIN. At 125 lbs, people wonder how I stay so slim and thin. But when I tell them I have food allergies, they tell me that they wish that was their problem so they could be as thin as me. The grass always seems greener on the other side. Anyhow so I just changed my diet basically and take probiotics and of course when I had V V, I had a partial vulvectomy back in Feb 01 and that has allowed me to have painfree sex again. Well anyways goodnight guys. Thanks for all your responses in Emailing Tyra.
CommentHi Lynn, Thanks for all you're doing for all of us with VV, etc... if you have a moment, would you mind emailing me or posting about your partial vulvectomy? I have that scheduled next Monday... (we tried in Feb. but only got one gland out... due to excessive bleeding the doctor had to stop...) I would appreciate any input about your surgery or healing process. Thanks, Heidi hiders@quixnet.net
CommentGood morning Heidi, I know you requested that I emailed you personally about my surgery and the healing process. But I just decided to just add it to the guestbook so that others can hear my story as well. Hope you don't mind. Okay, let's see where do I began. First systems I began having was nerve tingling sensations in the vulva, sharp shooting pains. It took me a while to realize that the symptoms started witin 5 minutes after eating or drinking (even water). The next symptoms I began having was pain in my vestibular gland. The q tip test hurt like hell. The next symptoms I began to have was tearing of the vulva, very dry irritated and I couldn't wash with ANY soaps. The next symptoms I began having was when I ate food (no matter what it was), I would feel burning sensations through my entire body like my fingers, toes, vulva, back and arms were litterally on fire. I knew it was my nerves, but the Drs never could explain the mystery of how food seem to cause these problems. Anyhow like most of us, I've seen several Drs, obyns, neurologist, gastrointestinal, psychiotrist and NONE of them has helped me! Then I just found out if there were any Vulvodynia specialist in my state that could perferm a vestibulectomy on me so my glands would hurt any more. I mean I couldn't have sex, It would hurt and burn when I sat down at work for 8 hours a day typing on the computer/answering phones. So I found Dr. Hatch. He told me about the procedure and the rest his history. Because it was 5 years ago, I don't remember much about the surgery. I just remember after it was over with, It hurted down there and I had to keep ice packs on it like 4 times a day for about 10 minutes each. I remember the healing time took anywhere from 3 to 6 months. Then I could have painfree sex again. I remember my perinium was tender from the surgery for about 1 year. But although I could have sex, I had to be careful of the sexual positions so that the perinium wouldn't tear. Now 5 years later, I could have sex any position. The only thing I know about my disease is to stay away from antibiotics, stay on a yeast free, gluten free and sugar free diet. I know that since I have leaky gut, toxins, yeast will get into my blood stream, colonize in the vulva area and that's when the pain starts again. So that is why I know that I must stay on a diet to keep my issues under control. At the same time, I take probiotics for my leaky gut and that helps too. Anyhow as far as the Vestibulitis that I once had 5 years ago that prevented me from having sex, I know that was due to food allergies, the food that I was eating at that time that first started my issues in the first place was being a whole grain diet. I ate lots of wheat and graines and gluten. I wasn't eating like most peopel eat because I was persuing my modeling career and I just wanted to be healthy and fit. But I didn't that food will mess me up and it did. Anyhow I know that I don't worry too much about ever getting Vestibulitis again because I know to stay away from the foods that caused it in the first place. Have a good day you guys.
CommentHello, I suffered with vulvar pain for the last couple years. I saw many specialists who were unable to help. I had no visible signs of skin problems or infections. I had ALLl the treatments and finally gave up. A few months ago, I began having rectal pain as well and upon palpitation (done vaginally) my pudendal nerves were found to be bery painful. I have seen the cpecialists for this and been given the diagnosis of pudendal nerve entrapment. The treaments for it include PT, nerve blocks, and surgery. I am now scheduled for surgery shortly. The surgery is not something to take lightly and I am in no way advising to hav it done. I am simply stating that my vulvodynia was the result of a nerve compressions and I have decided to try to relieve it through pudendal nerve decompression surgery, which has varying success rates. Had my rectal pain not began, I probably would not have made this decision. I am providing this information for anyone who has vulvodynia caused by nerve pain, especially if you have discomfort when sitting and rectal pain. It may be something to think about and talk with your doctor about. I am also including this here so people know that pudendal nerve entrapment can cause vulvar pain.
CommentRe: Pudential Nerve....I have been suffering on and off for 10 yrs. with VV. This last episode has been going on for a year now.. I am on neuronton and at first it helped, but lately it isn't. I have SEVERE rectal burning and pain. When I have a BM, sometimes I can feel pain. The dr.s say I do not have hemorroids. Could this be the pudential nerve entrapment you wrote about? I am suffering terribly. The dr.s just don't know what to do with me anymore. It is very hard to function with this constant horrific burning and pain. Sometimes the pain is way up in my rectum....that is when it's the worst. What do you think? Could it be this nerve entrapment?
CommentSara, In my opinion (I am not a medical doctor), your symptoms are very consistent with pudendal nerve entrapment. Where do you live? Do you have access to an informed gynecologist or vulvovaginal pain specialist or other doctor who you feel can evaluate you? If you are able to travel, there are some experienced doctors you could see for a full work up. There is some information available on the web, such as at www.spuninfo.org. I believe this condition is widely under-recognized in women as a cause of chronic pelvic and vulvar pain. .
CommentThanks for the quick response on nerve entrapment. I live in Syracuse, NY. I'll start digging for info. on specialists. This last bout of rectal and vaginal pain is so horrific, I just cannot keep on like this. Someone has got to have the right answers for me. I have never had any of the 9 dr.s I've dealt with over the yrs. mention nerve entrapment. They have talked of spasming but not entrapment. E-mail me personally if you get a chance. Thanks again.
CommentI just got married 7 months ago and my husband and I were only able to have sex the first month of marriage. It began to be very painful to the point it was impossiable to do it. I had to wait several months before I went to the doctor because I had no insurance. By that time not only was it painful to have sex, but I also had signs of a yeast infection. I had to take two different treatments for the yeast infection, which cleared up the itching, but sex was still very painful. I am starting a steroid cream tomorrow that the doctor thought may help. I really feel like I have vulvar vestibulitis after all I have read about it. I read something somewhere about a women having what she thought were UTIs and then when the tests came back they were not. I had the same experience twice before sex became painful. I think more so than not being able to have sex, whatever I have is constantly on my mind. I want to tell people about it, but feel I can't. I've told a couple of my friends and they just didn't seem to understand. I have trouble focusing on my work. I really feel bad for my husband, it's gotten to the point where I have a hard time with him even showing affection towards me, because I know where he wishes it would lead to and I usually get upset and start crying. I just feel very frustrated. I feel so cheated.... I was a good girl- I saved myself for the man I married and now I feel useless to him (he deals with the situation very well and has been very understanding- but this is how I feel).
CommentHe Sara and to all of you talking about the nerve entrapments. I know all about the shooting and stabbing nerve pain in the clit, down the legs and all that. It may not necessarily be due to nerve entrapment or pelvic floor muscles. If you get those pains during or after you eat, it could be related to yeast and/or oxolate related foods. I only get those symptoms the MOMENT I eat sugar or high oxolate foods so mine is diet related. LISTEN, you can have yeast all in your nerve tissues that causes the nerve pain, too much oxolate in the blood can cause these pains as well. Or just toxins and chemicals in the food can all get into the bloodstream and your tissues and cause allergic reactions that effect your nervouse system. Like me, it is caused my leaky gut and from low acidolpholus, that is why I take probiotics to lower my food allergies and all that. So find out when it is that you get the pain, if it is when you eat, its most likely diet related. So many of us who has been dealing with this horrible disease and who has been posting and reading on this site for a very long time, we all know that you can still have yeast infections that effect other areas other than the vulva and not show up in cultures. I urge you all to look up Systemic Candida/Yeast infections. You'll be surprised of how much you've learned. Also read up about the Leaky Gut Syndrome as well. This could be your problem. Also most of us have hormonal embalances to. Go get your hormones checked. But for the most part, with me, I just try to stay on a sugar free, yeast free, gluten free and oxolate free diet and take my probiotics daily and I am okay for a long time. I get nerve pain and yeast infections if I just even eat some strawberries. So we all just have to know our limits and be careful and know that we will all beat this disease one day. Our bodies are just out of balance and it is up to us to correct the balance. The Drs ain't gone do it for us. Taking medication doesn't solve our problems. It can only trick our bodies for so long before our bodies begin to reject it. Goodluck to us finding a cure. Oh and someone had mention about a week ago that she couldn't access the vulvodynia chat, well me neither. I have NEVER been able to access it. Well I sighned up for it months ago, but when I log onto chat, no one is chatting and It appears that I am the only one in the chat room and then I get a message saying that they are updating the chat room or some crap. So I just stop waistin my time with it. Goodnight all. We'll talk soon. by the way, FRANK- How is your wife doing these days? Best of luck to us all.
CommentI agree with Lynn that all other possible causes of pain should be ruled out prior to considering merve entrapment. However, yeast, etc. does not account for every problem and dietary changes will not help a nerve problem. I personally have never had a yeast infection. I am trying to help others see that nerve entrapments should be tested for and discussed with a medical professional. I am living proof that a person can have vulvodynia as a result of pudendal nerve entrapment.
CommentOne thing I do know is that dietary changes my nerve problems, but that is just me. I know that we all lots and lots of nerve tissius in our intestinal tract and if we don't have enough healthy flora in there to help fight off toxins, parasites and chemicals that is put in our foods these days, then that is when you nerve tissues will become too overwhelm and gets irritated and causes nerve pain. Because then the tissues gets clogged with yeasts, toxins and so forth and it can't help but to send off nerve signals letting us know that something isn't right. At least that is my case. My nerve pain comes from food allergies, my intestinal tract is off balance due to me taking some antibiotics for only 5 days for an ear infection and because of that, my it is hard for my immune system to fight off infections...I am sorry guys, I am just rambling on about my problems. I just want to help you all if I can. I know some of you may have nerve entraptment and yest you should definately look into that. But I just know what I know and if any of you have any questions, please asks me. I've been dealing with this mess since 2000, had surgery in 2001, beat this deasease by changing my diet back in 2002, Even had a baby in 2003, but when I took antibioitics for JUST only 5 days on Christmas of 05, that's when I felt the problem comming back. Anyhow, good luck to us all. We'll talk soon.
CommentLynn....I remember you from before. You recommended using Vanicream down there. Isn't that you? I ran out and bought some in 2001 and it helped. NOTHING is helping this time. I'm on neurontin, and I still can't quell that pain. I'm in pain 24/7. I was doing well until I decided to walk 5 miles a day. Low and behold, I got a tingly itch one day. It got worse. My dr. started treating me for yeast with pills. That made me almost suicidal. The yeast went away, but the horrible pain remains. I pray all the time in between driving my dr. nuts and crying. I'm trying to schedule in a different dr. I'm going to try the nerve entrapment route, or ANYTHING he suggests. I'm really suffering here, as are we all. Wish the vanicream worked this time!
CommentLynn...are you the one who recommended Vanicream 5 yrs. ago ,aren't you? I used it in 2001 and it really helped me. It's not helping now though. Even the neurontin isn't touching this this time around. I'm at my wits end. I was OK from 2001-2005. I would get irritated once in awhile, could not have penetrative sex, but was functioning w/o pain 24/7. Then I decided in the spring of '05 that I was gaining too much weight. I started power walking 5 miles a day. Low and behold, I got a tiny itch down there one day. It was downhill from there. All the old symptoms came rushing back. I pray every day for some relief. At first the neurontin took the edge off the pain, but last month it stopped working. I'm trying to get in to see a new dr. in Syracuse. One dr. I tried to see rejected me. She only sees vestibulitis patients, not full blown VV patients like me. So, Lynn, is it really you?
CommentLyn, my vilvodynia and IC is definitely Yeast. I am menopausal, but am only 56. Sex is painful especially in the entrance and my urethra is irritated. I heard that Estrogenm like Estrace can help atrophy. I am scared to use it because estrogen even in cream form can have yeast grow and may allow my vulvodynia to come back. As of now I have been well since i treated my yeast for 3 straight years. I am sure my yeast is definitely under control, but why is sex still painful. Is it perhaps my tissues were badly damaged. How can i repair this. HELP. Should I or should I not use Estrace or any other estrogen cream vaginally to help strengthen my tissues.
CommentHi all. I'm so grateful to all you gals. Really. I have been suffering with extreme symptoms of vulvodynia for 2 and a half years now. Severe burning , itching, pain, shooting pains redness and imflamation. I'm so utterly depressed... I'm 18. Is anyone my age out there suffering the same??? I've tried everything, literally, to no avail. Even emailed Oprah... we will see what good comes of that...
CommentHi Keira, I'm 20 and I've been suffering from vulvodynia since I was 10, started with burnign and stinging during urination now the whole vulvar vestibule is tender and sore. I've tried literally everything, am now trying effexor, acid redux, cystaq and am going to go to chiropractic, i can let you know how it truns out. Let me know if you want to talk over email or something, maybe i have some suggestions that might be helpful. I know how hard it is dealing with this at our age, i lost all of my teenage years to this horrible thing, adn I am not ready to lose the rest of my life. I'll keep you in my thoughts and prayers.
CommentHi Nora, Thanx so much for your response. I feel your pain, it's nice to know that there is someone out there that is the same age and dealing with this burden. Feel free to email me. I would love that.
CommentDate: May 7, 2006 Hello, everyone. I am new to this site and have just touched upon the first guestbook entries. I may end up being a "regular" here. LOL I feel very confident that what I've been suffering from for nearly 3 years is, in fact, vulvodynia. However, I don't know what the underlying cause is. I will give a briefing on what my experience has been with this and will hopefully be able to connect with many more ladies so as to gain some insight into this pesky ailment. I am definitely sure I first started noticing some annoying "soreness" in what I know is definitely the labia majora after the birth of my third child in July of 2003. That fall, I, upon closer inspection of the 'nether regions', discovered what felt like a small pimple when I pressed on my skin a certain way. I tried taking this issue up with the OB who performed my c section. It appeared that he was only trying to grasp at straws and threw the words "vulvar lymph node" on my record, which I found out after the fact. When I looked online at the subject of vulvar lymph nodes, all I kept seeing was the word cancer. This, of course, alarmed me, so I went to a different OB, one whom I had never gone to before, for a second opinion. She was thorough, much more thorough than any other OB had been. She didn't see any bumps or anything on the vulva or around it. I can't remember if I had mentioned the sore feeling that I had on occasion. Before I continue, I will list the issues that I've recently had at the end of my 'bio'. I went on my way with no real answers. No biopsies, etc. were taken. Nothing else was done. The problem was not at a severe stage, but it existed (and persisted!) Fast forward to NOW: I was too timid to bring up the subject to my new OB/GYN back in January during/after the pelvic exam and pap test. (I had a cat scan performed on 12/17/05 to confirm a ventral (or incisional) hernia that I incurred after my third c section. The cat scan also revealed a large dermoid cyst on my left ovary. I was on a mission to locate a new gyno doctor and wanted to find one who was willing to work with the general surgeon during my cyst removal in the event that the general surgeon needed to be in the operating room (the ob/gyn went at it solo but did, of course, have a medical assistant assisting him). He saved my ovary, too--a 2-hour surgery that took place on 3/22/06). I did end up bringing this concern to the new OB at my most recent post op visit following my cyst removal. I had to point out the area in question because he wasn't getting it. He did take a swab/culture but did not see any yeast or bacteria. He slapped the word dermatitis on it (I thought, after online research, that it was probably the most likely culprit) and prescribed Temovate, a very high-powered steroid cream that was to be applied sparingly 2x daily for no more than 2 weeks. I faithfully applied the cream but slacked off within the past week because I knew that it wasn't going to totally solve my problem. I would occasionally get the feeling that something was crawling in that area of the body. The words "pubic lice" came to mind, too, but I am pretty certain I don't have anything like that! LOL Anyway, I hadn't used the Temovate yesterday but it on this morning. At some point during the day, whether it be before I left church for home or after I was already driving home, I started noticing a constant pain in that area (the left side of the labia majora) and wondered if somehow my nerves in that area had been damaged. After being home for a couple of hours, the pain intensified and got WORSE! I ran into the bathroom for a look-see. Sure enough, something was drastically wrong! I could barely get the skin apart for a look because it hurt so badly. I saw what appeared to be a tear, or fissure, in the skin and thought I felt a lesion/lump but am not certain if I actually have a lump. However, a few peeks later I discovered that the area looked like someone had poured acid on me! It is very painful, especially when standing, and I got a hold of the pharmacist and a nursing supervisor at a local hospital (the nursing supervisor is a friend of mine), and both advised to get in the tub soon and try to at least let the plain water wash away whatever steroid is still left on the skin. I will DEFINITELY be getting in to see the doctor tomorrow; if he's not in, it will be one of his colleagues. I honestly think this stuff tried to burn my skin off! I don't know why the timing of it is now, though. I was at a standstill, wondering whether or not to follow up with the OB because I've only seen him since the end of July because of the dermoid cyst saga. He was thinking that he wouldn't be seeing my face again until January when my next yearly exam is due. Little does he know, hmmm? I've not finished reading all of the guestbook entries yet, but if anyone out there sees this after I post it and has a similar experience or some advice to share, please, I'd love to hear from you! You can post it or email me. I don't know what the doctor is going to do tomorrow when I get in there, but I hope I don't scream from being in anymore pain, I can grant you that much... Thanks for listening! P.S. I was going to have a follow up with him anyway to discuss what Plan B might be because he said that if the Temovate didn't work, that we'd try something else, but now THIS came up! Sheesh! Possible IBS (undiagnosed). Haven't had the symptoms (waking up during sleep with severe abdominal pain), having a few diarrhea attacks, and feeling like vomiting at the same time since my recent hernia surgery (with mesh) Ventral hernia repair with mesh - 1-10-06. Doing well post op but still have jabbing pains in abdomen where uterus would most likely be. Upon inspection, discovered a piece of stitching/knot that the general surgeon will remove at the hospital in July. (He likes to wait for the 6-month post op mark, so that's why it's not taking place till at least July 10, 2006) Dermoid cyst removal: 3-22-06. The doc did a great job; I had a concern about a hard ridge of skin underneath my incision; it's not a keloid but something common that occurs when they cut thru the fascia. Said my body will take around 3 months to settle down, esp. since I';ve underwent 2 surgeries close together in the same area. He revealed to me at my post op visit recently that he's still concerned that he didn't accidentally weaken the hernia mesh when he was performing the cyst removal. Heartburn and acid reflux; just underwent an upper GI series yesterday (5/6/06) which, thankfully, did not reveal a hiatal hernia but showed some reflux; my general surgeon may perform more diagnostic testing; will find out hopefully tomorrow. I often get sore throats and did incur strep throat while pregnant with my second child in 2000 but supposedly haven't had strep since. Do not know if the sore throats are related to the acid reflux. I told the general surgeon about my choking episodes while sleeping. Said this is not normal/dangerous, that I could aspirate on it and that it could cause pneumonia or be fatal, so that's why he ordered the upper GI series. The choking episodes come and go, but they happen while I am actually sleeping, and I wake up choking on what appears to be the acid. The last 2 bouts were around a month apart. This guy is thorough, so he may very well order an endoscopy. Recently diagnosed with [seasonal?] allergies by my family doctor. Was given samples of Zyrtec and Nasonex nasal spray. Didn't need to take the nasal spray. I'm not taking the Zyrtec right now because I'll be having a colonoscopy on May 16 to check for colon polyps. There's a family history of colon cancer, and my mom and her brothers have all had polyps found during their tests, and my mom and one of her brothers both have diverticulitis. I had a pilonidal cystectomy performed on 3/22/02 by a colon and rectal surgeon. It's a tailbone cyst. Took 5 months to totally heal. Thankfully, no recurrences. I have plantar fasciitis (along with a heel spur, unless they're one and the same) in my left foot. No surgery has been performed. My right foot hurts on occasion, but on the side, not the bottom. I suffer with bouts of anxiety. I had 2 attacks while in the hospital after my dermoid cyst removal. I cannot take Percocet, either. I had all the classic side effects of Percocet, so I think it's best to steer away from that drug... I felt more tired during this past winter, possibly due to the hernia and cyst, but I'm not 100% sure. I don't feel too tired (after my 2 surgeries) at night when it IS time to call it quits for the evening. Could it be from my anxiety over my multitude of health problems? Wouldn't doubt it...LOL 3 c sections to go along with all of the other things
CommentI'm just wondering if anyone has tried Threelac recently? Has it worked? How well? Did you have to do other things as well as Threelac, i.e. diet, supplements? Also, has anyone tested positive for candida but then tried to eliminate candida but had no change in their pain?
Commenti'm very interested in learning more about the biofeedback. i check your site regularly for any new updates. would like to see seminar's in the chicago area that the public can attend. thanks for all of your research and hard work. patty
CommentTo E Laswell: If you've been reading past guestbooks then you may have come across my name and my posts regarding my wife's vulvodynia symptoms. There are two things I wanted to comment on after reading your post. First would be the tiny lumps and other skin issues such as redness, burning and tearing on the labia, vulva and clitoris. I have seen all of these things on my wife including adhesions of the labia. These skin issues seem to come and go and are part of the mystery of vulvodynia. Maybe some of them are the result of yeast irritation, food allergy, hormones or any number of other causes. The other thing I wanted to mention was your abdominal surgery for hernia repair, I have had abdominal surgery since I was a little boy and I have been tortured with intestinal adhesions. Surgery to remove these adhesions only results in more internal scars. I passed this information along to you because the I.B.S. can be the result of adhesions, they sometimes kink the intestines and cause all sorts of problems. I have to be very careful not to eat things that can cause a blockage. I hope this is not the case with you and that there is a simple medical solution. Try not to get too frustrated with the doctors, many of them still know very little about this illness and they try whatever they can to relieve various symptoms. Avoid using too many medicines at one time and read the inserts. Some of them can cause thinning of the skin and actually make things worse. Best of luck.
CommentHello Sara, yes it is me. I am the lady who will stress how vanicream is good. BUT it helps only for some part of the pain, depending on the underlining cause. Vanicream helps me NOT durring a yeast infection, NOT when I am itching and burning from food allergies, it ONLY helps me when my vulva is irritated from soaps or like if my man performs oral sex on me and then my vulva gets irritated, then the vanicream will help moisturize it and heal it back to feeling normal again. So that is when it helps me. If I am burning from food allergies, have nerve shooting pains, on my period or something internal, then no it doesn't help. But external irritations, it does. Now if you are in serious internal pain, if you have food allergies like me, it could be do to your hormones, something you ate, drank or who knows...if you have leaky gut like me, food is the culprit and you need to get that looked into. Go to a natural pathic Dr that specializes in leaky gut, fibromyalgia, and food allergies. And just so you know Sara, if you have food allergies and get recurrent yeast infections, you may want to look into having the leaky gut. And listen, even if you can't find a Dr that specializes in these issues, you can order some tests from the Great Smokies Lab. They have all kinds of tests for our issues. You can order test from the internet and they'll send the results to your Dr. to go over with you. If your current Dr that you have does not believe in these tests or is skeptical about whatever, go to a Dr who knows a little about your issues. Anyhow, you can order test so they can measure the yeast in your system, a test that can measure your good flora (good bacteria), they can tests for leaky gut, bacteria overgrowth...all that. Just go to Great Smokies Lab website, check out there tests and go from there. I ordered a few test myself years ago and it has helped me finding out what my problems were. My Drs never knew! Anyhow, good luck. We'll talk soon.
CommentLynn....I just knew that was you. I am in the course of getting ANOTHER dr. Some dr.s have refused me. They will take vestibulitis patients, but not down and out vulvodynia patients with pain 24/7. I will mention all these tests about food allergies, leaky gut syndrome. etc. I can't quite get a handle on what makes the pain worse....diarrhea everything worse, I know that. That could possibily be the leaky gut syndrome. All I know is that I'm really discouraged! After 4 yrs. of being out of pain most of the time, I've gone back into my nightmare! Thanks Lynn for all your support. I'll be talking to you and everyone soon.
CommentTo J.E. J.E., "you wrote It's been over a month now that my pain level has been below a one on a scale of one-to-ten, and I think I am finally getting over this. Having read entries in the guestbook on several occasions, which made me increasingly despondent, I wanted to post this right away to share my situation, and some hope. My symptoms started in the typical fashion -- I'm 36 years old, a part-time lawyer and a mom. I used to work out for an hour a day, five days a week (mostly spinning -- which makes me wonder if there's a correlation)." I noticed we have a lot of the same symptoms and history. I would be interested in chating more with you. Please email me at laps1975@hotmail.com
CommentSpinning/biking place pressure on the pudendal nerve which is the nerve that innervates the vulva. If you feel better after stopping these activities, then it would probably be a good idea to find a different form of exercise.
CommentPudendal Nerve, Is you don't mind me asking, where is your nerve trapped and how do you think it happened? Good luck with the surgery.
CommentHi Sara, you said you were going to mention the tests to your Dr. but listen, MOST Dr.s don't order home kit tests because MOST insurance don't cover it. I had to pay out of pocket for all my tests. You don't need a Dr to order it, you just need to have the Dr. go over the results with you because the lab will give the results to your Dr. (whichever Dr.s name you give them) and the Dr will go over the results with you. You can look for great smokies lab on the internet today, look at there product tests kits and order what you want. Actually, when you order, you'll be ordering from a Dr. on line that sells the kits and that Dr. will send the tests kits to you. So even if you're home Dr. doesn't work with you, you can find one on line that does. That is what I did. I live in AZ, had a Dr in NY go over the results with me, he sent me some probiotics and that's when I felt a heck of a lot better. You can email me anytime at cpleasant1@cox.net if you have ANY questions. The probiotics has helped all this time (years) but the minute I took antibiotics for JUST 5 days, that messed it all up, gave me leaky gut and the vulvodynia came back. So now I am back on my diet and take probiotics again. I was doing good for about 3 years, I could eat WHATEVER, WHENEVER I want but now, I have to get back on the diet and take probiotics until my gut heals back to normal and healthy. That can take months to a couple years. Goodluck to us all in having better days.
CommentI have not posted for many months, but recently, I found out about a new product that made me think of all of the women on this Guestbook. I heard that it just came out in October, and it is getting a lot of support from the medical community (which seems unusual for a non-prescription supplement). It is called Natural Cellular Defense, and it is supposed to absorb toxins from the body, thereby speeding up the body's healing process. I have heard of and read several testimonials that make me think it may be beneficial for people with vulvodynia/VVS, or any ailment for that matter. I've heard that it has eliminated unrelated symptoms such as body tremors, very dry skin, memory loss in the elderly, etc. I know a couple of people who started taking it for general health and found an increase in their level of energy. One of them gave it to her dog and it appears to have eliminated parasites (worms) that she did not even know her dog had. That woman told me about a biochemist taking it who claims that it is the miracle we have all been waiting for. Apparently, there are conference calls every Sunday with guest speakers (often physicians) who talk about this "amazing product", but I have not listened in on one yet. I did read about one study that correlated NCD with cancer remissions in 78% of stage 4 cancer patients in a preliminary trial. Maybe it's a lot of hype, but since hearing about it a few weeks ago, I know several people who have begun taking it and I am excited to try it out, too. My VVS is gone (went away after I went off the pill), but I've heard that people have had lower cholesterol after taking it, so I wanted to try it for that, as well as for the all of the other ailments I've had to deal with! Here is where I ordered mine: http://my.waiora.com/products/item26000-NCD.php It is not cheap, but if you like it, you can sign up as a distributor and get it at a reduced rate. And if it really is the "miracle we have all been waiting for", then it is worth it!
CommentDo you think that you can post a some links to the testimonials regarding the Natural Cellular Defense as it applies to VV/VVS. I am most interrested in the ones regarding Vestibulitis. Or see if anyonme who has taken it with positive results can post here. I can't find anything by doing a search on our condition and using this product. Thanks!
CommentTo All: Could be another scam like Coral Calcium. Minerals Information Home || Commodity || Country || State || Products || Contacts || Commodity || Zeolites Statistics and Information Publications Contacts Subscribe Zeolites are hydrated aluminosilicates of the alkaline and alkaline-earth metals. About 40 natural zeolites have been identified during the past 200 years; the most common are analcime, chabazite, clinoptilolite, erionite, ferrierite, heulandite, laumontite, mordenite, and phillipsite. More than 150 zeolites have been synthesized; the most common are zeolites A, X, Y, and ZMS-5. Natural and synthetic zeolites are used commercially because of their unique adsorption, ion-exchange, molecular sieve, and catalytic properties. Major markets for natural zeolites are pet litter, animal feed, horticultural applications (soil conditioners and growth media), and wastewater treatment. Major use categories for synthetic zeolites are catalysts, detergents, molecular sieves. Publications If you are interested in receiving an email notice when a publication is added to this page, please refer to Minerals Information List Services. (To view or print a document in PDF format, download the free Adobe Acrobat Reader. ) Annual Publications Minerals Yearbook Zeolites PDF Format: | 1994 | 1995 | 1996 | 1997 | 1998 | 1999 | 2000 | 2001 | 2002 | 2003 | 2004 | XLS Format: | 2002 | 2003 | 2004 | Archive | 1932-1993 | Special Publications References on Zeolites (PDF) Contacts USGS Commodity Specialist Robert Virta Phone: 703-648-7726 Fax: 703-648-7757 Email: rvirta@usgs.gov USGS Resource Specialist Skip Navigation Links U.S. Department of the Interior U.S. Geological Survey Minerals Information 988 National Center Reston, VA 20192 USA URL: http://minerals.usgs.gov/minerals/pubs/commodity/zeolites/index.html Maintained by: rcallaghan@usgs.gov Last modification: 12-May-2005@11:05 Privacy Statement || Disclaimer || FOIA || Accessibility Contact: Robert Virta (rvirta@usgs.gov)
Commentwas diaganosed with Vulvadynia and it turned out to be LYME DISEASE!!! Beware you might be being misdiagnosed.. Lyme tests may come back NEGATIVE does not mean you dont have it.......Beware of Fibromyalgia also.
CommentAlly, since Natural Cellular Defense (a zeolite) was only recently released, I do not know if anyone with VVS has tried it. My guess is that so many people have experienced symptom eliminations/health benefits from it because their ailments are often caused or prolonged by toxins in the body and imbalanced ph levels. If the body is purified, then the environment in the body is conducive tor healing. But hey, I am no scientist or medical professional. I will just try it for myself and see if I notice anything. By the way, there are 100 different zeolites, and the zeolite in NCD is considered entirely safe and non-toxic. It is backed by an approved U.S. patent, supported by scientific research, and already on the GRAS (Generally Recognized As Safe) list for food ingredients. Zeolites were used to clean up radioactive toxic waste at the Chernobyl site (imagine what it could do for our bodies!). Now, it is in a consumable liquid form. The patent actually refers to NCD as a cancer drug, but many of the testimonials on the website do not reference cancer: http://my.waiora.com/testimonials/
CommentHope could you please post your results with the NCD? I don't want to try anything else right now unless someone says it worked for them.
CommentHello everyone! I've had VVS and generalized dysenthia (spelling?) for about 10 years that I've known for sure. I think I had it earlier and didn't know it was that. I've tried many meds., physical therapy, capsacian creme, etc. To be honest, I don't think any of it has helped me. I was on high doses of amitriptyline at one point and I think that did help at times. Like I would go a few months with no pain and then I'd get a flare and then a few months of good then flare, etc. Then I wanted to get pregnant so I had to go off of it. Actually, I think while I was pregnant I think I felt better in the vulva area (sometimes I think it's hormone related). Unfortunately, I developed IBS while I was pregnant. Initially, my IBS was on the diarrhea side so when I had my child and went back on the pill, I could take ami and things were okay. I also had bad hemorrhoids and then after my second child my IBS turned the other way and I was constipated. So no more ami. Since then I tried a number of drugs that are supposed to be not as constipating as ami. I really don't think anything has worked as well. I'm on Lyrica right now along w/Singular and I use Capsacian Creme. Like I said I don't feel like anything works and in the mean time, I am tired and putting myself through pain for what? I was lucky enough to get pregnant, but now I feel like I don't have the energy to keep up w/them. My husband has been supportive through all this, but I feel bad for him. Our marriage has suffered due to this. I guess I just wanted to vent and let others know that I know how they feel. I live in the Philadelphia area and I wish there were a support group for this. I've heard of none. If anyone knows of any in this area, please let me know. I really love this site because it makes me feel like I'm not the only one and I can understand. Thanks for listening!
CommentHello LIN, I read your post, I just want to say that BE CAREFUL while you are taking LYRICA. Some women have reported that there pain has developed or has worsen while taking LYRICA. I suggest you go back and read some of the previous posts. I can recall AT LEAST 15 times reading that LYRICA may be making you worse. Good luck!
CommentI just like to mention that after I been on LYRICA for one month my urethra pain got much worse.
CommentHi Gwen . I had my blood test done for LYME disease and it comeback negative. What do you meen to telling that even blood work test is negative it can be still Lyme disease. Is there any another tests for it? Did your blood test was negative? Thanks Marina.
CommentJust to mention that I had to stop drinking coffee, eating chocolate, consuming all drinks and food that contains caffein. It seems that they really disturb the proccess of healing with the homeopathy treatment. Greetings from Italy:)
CommentHi Lynn! Thanks for your information! I have read the posts and side effects do concern me. For the people whose pain developed, were they on Lyrica just for itching or dryness or something like that? My situation is hard to describe. I actually had two weeks (Yeah! Two whole weeks!) a few weeks ago and thought. . . .Wow! This is working and then it comes back. My "pain" is mostly dryness, itching, burning. Some days I wake up and I feel "okay." Then the next, it's like I'm back to square one. It's crazy. So I don't know if I'm getting worse or that it's just not working for me. Like I said, I feel like nothing has made a big difference for me. Is it wrong of me to want more than two weeks of feeling good? I want to be normal again!
CommentHi, It is really encouraging to see that we are not alone in dealing with this frustrating condition. Thank you all for your thoughtful postings. I've been on five rounds antibiotics since January for UTIs, etc. They've also found bacterial vaginosis twice and yeast infections on and off. They found one again today even though I have not been taking antibiotics since March. It is really really frustrating. I can't seem to get rid of the yeast. I've been treated by Diflucan and Clindamax many times, but the yeast inevitably comes back after several weeks it seems. I am pretty desperate. The yeast seems to have caused vulvar vestibulatis, which as you know is very frustrating and painful. If anyone can recommend something to eliminate yeast, I would be ever so grateful. This has really interfered with all aspects of my life...
CommentHi LIN, so you have a lot of dryness, itching and burning? That sounds like a yeast infection to me. Did you get tested? If so and if cultures come up negative for yeast, you can still have yeast in your blood (very specific and expensive testing is required to test for Systemic Yeast Infections). If you have a yeast infection, Miconozole helps me and also the prescription "Ketoconozole 200mg" makes it all better again. If you just have dry irritated skin from soaps or any other irritaions, I have used "VANICREAM" for that. That has helped me whenever I washed with an irritated soap or whenever my man performs oral sex on me and my vulva gets irritated, then the vanicream helps me. I swear the vanicream was my savior when I used to get paper cut tears on my vulva years ago when I was first diagnosed with this horrible disease. Good luck!
CommentHi Lynn, That is interesting to know. Thanks! No, I have never done any blood testing for yeast. I do see a specialist in Phila. who specializes in vulvodynia disorders. I believe she is one of the best in my area. Don't think there are many. So, you know, I would hope she would have suggested that. I believe she definitely feels mine is from nerve damage. She does special yeast testing whenever I see her which is about every six weeks. Not like testing that would be done in a regular gyno office. But she never rules out the oxilate diet. I've tried that and I don't think it really worked me either. I use all special soaps and special detergents. So I don't know what to think. You put your trust in these doctors who you hope are really trying to help. It's like we are stuck. There's no cure for this thing and these docs just keep on trying new things. I'm not sure that they are even sure. It's just now fair that we have to change what was a normal life. I know others are worse off, but it's just frustrating. Is Vanicreme something you can get over the counter and is it safe? I know some of these creams are actually damaging (thinning skin) to the skin down there.
CommentHas anyone tried Goldenseal to relieve their problems- I was just reading it has healing qualities for down there.
CommentVanicream is vanishing cream made for removing make up, it has no medicinal or magical properties. Goldenseal isn't a treatment or cure for vulvodynia either.
Commenti thought i'd offer a little update for those of you who were in the 25th guestbook. i feel like i'm actually getting somewhere, slowly.i've now got a doctor who is completely supportive which is making the ordeal much easier - knowing i can go back and see her when i want is a lifesaver. i've also been having homeopathy, unfortunately with limited success, but my dr mentioned pelvic inflammatory disease to me today which i'd never even considered. alongside my vaginal/clitoral pain, i am experiencing lower back pain, abdominal pain and irregular bowel movements...it looks like it could be a definite option. i should have an appointment coming up with a doctor at salford hope who was recommended in this guestbook so i hope to explore this possibility with him when i get my appointment through. has anyone else explored the link between vulvodynia and pid? x
CommentLaura, I don't know who you are. I don't even see your name in any of the recent or previous posts. But let me tell you something about Vanicream. It has NOTHING what so ever to do with makeup or removing any makeup off your face. Where did you get that from? Vanicream is a Dermatological formula Moisturizer for dry, irritated, sinsitive skin. Now there is a vanicream cream and a vanicream cleanser. The vanicream cleanser is soap that does not have harsh chemicals, irritants in it. You can wash your face and the rest of your body with that. You can wash make up off your face just like you can wash dirt off. But there's no vanicream used for makeup removal. To all of you who want to know about vanicream, you can even call the makers of the vanicream- "Pharmaceutical Specialties, Inc" at 800-325-8232. They will tell you what you need to know about the vanicream. Now I don't know anything about Goldenseal because I've never heard of that, so I can't speak up on it. But back to the Vanicream, years ago when I began using it and testifying to it, I would tell other women about it, they have tried it as well and has had Excellent results. So I know what I am talking about. I understand that what works for one, may not necessarily work for the other, but from what I hear, it works for dry irritated skin. Like I said several times in my previous posts, it helps me when my vulva gets irritated if I accidentally get harsh soap on it (from washing my anus with antibacterial soap or from when I'm washing my hair and accidentally get shampoo on it), or from getting irritated from having oral sex performed on me. It only helps when I have external vulva pain, not internal pain caused my yeast infections, food allergies, oxolate pain and so forth.
CommentGoldenseal CAN be used to help treat and/or relieve symptoms of vulvodynia. Not all cases but some. It must be part of a comprehensive holistic treatment plan however. Goldenseal alone may not do it. But it CAN help.
CommentGoldenseal CAN be used to help treat and/or relieve symptoms of vulvodynia. Not all cases but some. It must be part of a comprehensive holistic treatment plan however. Goldenseal alone may not do it. But it CAN help.
CommentTo Lynn: So glad you are doing well and posting. I remember you from years ago and all you were going through. My wife tried the vanicream and it didn't help her tearing skin but along the lines of what you said it might be of help to some women. I think we've used goldenseal to prevent colds and illness almost like echinesia(spelling). Hey, it's worth a try.
CommentHannah, it seems that you have many other problems that can cause your vulvodynia somehow. The fact is (according to homeopath specialists) that short healing proccess of homeopathy helps only to sicknesses like flu, high feever, herpes, soar throat ecc. When it's about problems, presenting themselfs as symptoms of deeper sicknesses of the body, you may need to cure the whole "field" (homeotype, I''m sorry I don't know how the american homeopaths call it in english). That's what I'm doing. Now I started expiriencing worsenings (spelling?), the first was the strongest and the longest one - about 3 weeks. But still much weaker that the symptoms during my first 6 months of having vulvar vestibulitis. Now each worsening gets weaker and shorter. It may take months untill I recover completely. It's all about for how long time I've been suffering, placing one layer on another one. Talking about the psychological reason. Now I started seriously thinking of working much more on my character. Some edges are too sharp, and I think that might be one of my big problems. I maybe was always potentialy exposed, and the vulvar vestibulitis has caught me when my body was weaker than ever before. Let's start thinking why certain sicknesses are comming always back to us? Isn't the body a very inteligent machine that is trying to warn us? It worths changing direction and start looking from a diferent angle. Support from Italy. Chiara
CommentLin, I hope you don't mind me asking if you see Dr. Kellogg in Philly. (it sounded like it from your posts). I also began seeing her and have so far had 2 visits. I was impressed by the amount of testing that she does, and I thought that she actually had some compassion (compared to other dr's). She also told me that some of my pain is from nerve damage, and she put my on 75mg Lyrica, which has done nothing so far. She told me however, that most of my problem is due to the muscles/connective tissue in my pelvic floor, and she prescribed PT for me. Additionally, she prescribed cromolyn sodium cream for any allergies. Just wondering if these were some of the treatments she prescribed for you,and how you are doing. I at least feel confident that I'm going to someone who is an expert, even though it is eating a hole in my wallet.
CommentI am glad to have come across all of this information. I do have fibromyalsia and did have a frequent cycle of urinary Tract infections followed by yeast infections (back when I used to have sex.) Right now, vulvodynia seems like the most likely culprit. We have been dealing with this for about 6 years and are fed up. Especially because my husband and I hope to have children soon. I have three questions for all of you. 1. do some have the pain at the vaginal opening but NOT pain after sitting or biking for long periods or the itching? 2. Does any one know doctors in South/central Texas who can help? and 3. how have you all delt with insurance? For those who have done medication, biofeedback, and vulvar vestibulectomy how did you pay for it? Thanks. If nothing else, it is good to know my husband and I are not alone.
CommentHi Nicole! Yes, I do see Dr. Kellog. And yes, it seems like she's an expert. Not sure where you are exactly located but there are not many in the Philly and surrounding area. I did see another doc. in Philly and though I think he is probably an expert, he did not have any compassion. I do agree that she has more than he does, that's for sure. I also think her office is hard to deal with and she is very busy, so sometimes I feel a bit rushed. Anyway, I have tried PT and I believe it worked for me, but then I got to a point where they released me and I was fine for awhile, but then it flared again. So I guess if you (meaning anyone) has the time to go forever, it's great. I would have to go a couple times a week and I do have 2 toddlers, so that's kind of hard. I have tried a cromolyn compound. It worked for awhile but then I got a flare and she actually stopped me from using it. Right now she has me on 200 mgs. of Lyrica, 10 mgs. of Amitriptyline, 10 mgs. of Singulair, and I am also using Capsacian creme. I feel like I am on too many drugs. As I mentioned previously, I just want to be normal again, and right now I don't ever see that happening. I have a few good days here and there but that's about it. I know some people are worse off so I guess I have to be grateful for the few days here and there.
CommentHi again Nicole, My email address is above. Not sure where you're located, but if you ever want to talk more, send me a note. I was looking for a support group in the Philly and surrounding area, but don't think there is one. It's a shame. This is a hard thing to deal with and it just doesn't get enough press. So, in turn, I don't think many people know about it. Even docs,. so it gets misdiagnosed alot. It seems like the medical field doesn't think this is that important like other disorders. I know it's not fatal, but it's very damaging in all respects, physically, mentally, and emotionally. I really think more money is needed for research so a cure can finally be found. Anyway, it would be nice to have someone to chat with about this. People who don't have this or know someone with it just can't understand.
CommentTo Cat: Cat, do you experience pain at the vaginal opening but NOT pain after sitting or biking for long periods or the itching? Is it all around the vagina entrance, or downside, upside, left or right? Is it really at the beginning or even little bit inside? It might be a vaginitis, vaginism or vulvar vestibulitis. If you'd like to talk to me about, feel free to mail me. I'm living in Italy and paying for my homeopathic treatment from my pocket. Anyway, contact me if you need it. Support from Italy
CommentI was wondering if anyone could tell me about using Calcium and Magnesium to clear oxalates. I have read the information on the vulvarpainfoundation website, and have had some preliminary success with it, but I am wondering about the dosage and frequency. There is no information about how much and when to take it. Could anyone help me with that information please? Thanks.
CommentHi FRANK, Yes I do remember you too and your wife as all. I have been through a lot but these days, I am just great. I know what causes my vulva pain and what to do to treat it, I stay on a diet and I take vitamins. I'm not going to lie, sometimes I cheat and have sweet food like every other day, then I'll take some capryl after wards to avoid the yeast infection and the pain that I'll get if I don't take it. Anyhow, but for the most part, I am just fine. To SHANNON, Hello. I just want you to know that I too have oxolate allergies, I try to stay away from high oxolate foods, but should I cheat and have some cranbury juice or something, the pain will come like the 4th time I have to urinate from drinking/eating high oxolate food. I will SWEAR
CommentHi FRANK, Yes I do remember you too and your wife as all. I have been through a lot but these days, I am just great. I know what causes my vulva pain and what to do to treat it, I stay on a diet and I take vitamins. I'm not going to lie, sometimes I cheat and have sweet food like every other day, then I'll take some capryl after wards to avoid the yeast infection and the pain that I'll get if I don't take it. Anyhow, but for the most part, I am just fine. To SHANNON, Hello. I just want you to know that I too have oxolate allergies, I try to stay away from high oxolate foods, but should I cheat and have some cranbury juice or something, the pain will come like the 4th time I have to urinate from drinking/eating high oxolate food. I will SWEAR to you that I take Calcium and Magnisium vitamins too RIGHT afterwards to avoid the pain of burning during urination. Listen, I have a LOT to tell about my food allergies and my treatments. I swear to you guys, it all helps me. who has food allergies? I can tell you somethings that may help you. If it burns during urination, if you get frequent yeast infections, if you have stabbing nerve pains in the clit, let me know. I may can tell you what works for me in hopes that it will work for you.
CommentSara :: I live in Syracuse too and am shopping around for a doctor who might be able to work with me. Just curious who you've seen and what your experiences with them were, as I've only been dealing with this for a year of so now. Feel free to email me.
Commentit's funny you should say that - after 2 months of not noticing any improvements (except in terms of the fact that i no longer have fairly continuous diahorrea anymore) my homeopath has now decided to explore the idea of miasmas(???) which apparently means that i could have a deeper undiagnosed condition that is being masked by the symptoms i've been experiencing. she's given me a low dilution of belladonna to try and take the inflammation down further and then she's going to try and address this deeper issue. and i've also been to see a podiatrist about a (theoretically unrelated) condition, and i'm now having some special things made for my shoes to improve my posture and gait so i can't help feeling that i must be making some progress towards getting better, even though there has been no change in the pain. whatever happens, i certainly feel more positive about everything at the moment. i'll keep you informed.
CommentIt's ok, happened also to me after my first trials to get better with homeopathy. I was taking Platina for vaginitis (3 months), thinking that it could be the problem. (Useless to say that I didn't notice any improvement) The diference was that I did it by myself, without any homeopath advicing and studdying my symptoms. Meanwhile my mother didn't stop telling me that it might be much deeper then the symptoms only. And that's how I decided to go to a specialist homeopath. The chronic pains (symptoms) are longer and deeper to cure. Important is to look for the reason from depth to surface, not opposite. You understood it, and that makes me very very happy:) Keep up!:)
CommentDOCTORS, PLEASE READ THIS. I CURED MY VULVADYNIA. I believe that several things cause vulvadynia and there are several different treatments. PLEASE STOP PRESCRIBING PSYCOTROPIC DRUGS.....ALL THESE DO IS PUT A PATIENT IN A FUZZY HAZE WHERE THEY DON'T CARE IF THEY HAVE VULVADYNIA. I cured myself. First...I believe that some vulvadynia is cause by anemia. Anemia often goes uncheck and undiagnosed. It is a strange coincidence that when I was severly anemic that is when I would have my flareups. Vulvadynia is also hormone related. Perhaps that is an avenue that needs to be studied more closely. My most severe pain was when I was ovulating. Also, highly chlorinated city water adds to the irritation. Home water treatment systems can help with this. I treated my vulvadynia myself because doctors were unable to help me. The one treatment done by a doctor that did help was freezing the skin. Funny that the one treatment that helped was the one that fell out of favor. THE MOST IMPORTANT TREATMENT THAT I FOUND WORKED WAS A&D OINTMENT EVERY DAY, AT LEAST TWICE A DAY. I WOULD SOAK IN THE TUB FIRST, THEN APPLY IT FAITHFULLY EVERY DAY. ON REALLY BAD DAYS I WOULD MIX IT WITH LIDAMANTLE CREAM (A PRESCRIPTION). OATMEAL BATHS ALSO HELP. ON GOOD DAYS YOU CAN WASH WITH DOVE SOAP FOR SENSITIVE SKIN. No other ointments helped even if they were somewhat similar to A&D. Make sure you don't wear deoderant anything....pads, powder. Make sure you use unscented detergent. Don't eat real acidy food. I often had flare ups if I ate a lot of strawberries. DOCTORS REMEMBER, IT IS SKIN IRRITATION. IT DOES NO GOOD TO TREAT WITH ORAL MEDICATION. TREAT THE AREA THAT IS BURNING ONLY. PLEASE HELP ALL THOSE WOMEN OUT THERE....IT IS DEBILITATING AND THEY ARE COUNTING ON YOU. I KNOW I HAVE BEEN THERE. THANK GOD I AM WELL NOW. CP
CommentCathy, I also think that highly chlorinated city water might cause a lot of vulvar irritations. I caught my first symptoms in Oman, where I had to keep working for 3 months. The water there is more then highly chlorinated, it's just badley stinking of chor. But that's the only water I could use on this place. Not knowing what may happen, I didn't start washing myself with mineral water (the only other solution there). The expirience helps:) Repeating again, not all women get the same symptoms exposing themself on the same conditions. Each body is diferent, we might have something similar in common, but generally we are diferent as reactions. But chlor in the water, high quantity of has really badley messed up my vulva.
Commentanyone hear of the vaginal ring for hormonal help to the vagina, bladder, urethral (urethral pain) helps urogenital atrophy please look it up
CommentI was wondering if anyone on here had the same symptoms I have. I have been to 5 doctors and all tell me I am fine. It is so frustrating! I have had vaginal irritation on and off for about 2 years (it started right after I got off birth control). I also feel like I have to pee more (but my doctors say no bladder infection). It usually bothers me for about a month or two then goes away for two months. During the irritation time the pain is constant but not any worse during intercourse. My doctors have done many tests and act like I am crazy. They have put me on many antibiotics, antidepressants and diets. None worked! I was wondering if this sounds like Vulvodynia. I mentioned it to my most recent doctor and she acted like she had never heard of it. Recently it is ruining my life. I had to quit my job and just sit around depressed. I am happy to say that I am 3 months pregnant but it also puts me in a terrible position because I am afraid (even though the doctors can't find anything wrong) this could be harmful for my baby. I just found this site and wish I could try all of the hints people give but am afraid to because of the pregnancy. Does anyone know of a specialist in Houston? I am so uncomfortable and stressed. I don't know what to do..all I know is that this pain is not in my head. Thanks Katie
CommentHI girls. To Cathy, I want to say that you are right, some Vulvodynia is in fact related to hormonal imbalance. And when Drs run tests for that, certain hormones have to be tested at a particular time in order to get accurate results. But the Dr. SHOULD BE an Incronologist in order to do this. Any other Dr. can just run hormone tests and not know the right hormones to test for. And as I understand it, there are lots and lots and lots and lots of hormones in our bodies. Finding the right one that is off balance and running tests the right time of day is of most importance in finding out if our Vulvodynia is in fact hormone related. I can't do an oatmeal bath or use Dove unsensitive soap personnally. Both have burned me and made me worse in the past. But I'm glad that you have found the A & D cream mixed with Lidamantle cream that healed you and made you all better. You mention that the Lidamantle was a prescription. I wanted to know if it was a steroid cream because if so, I want to say be careful with that. Steroid creams thins out your skin and eventually can make the situation come back and matters worse. To KATIE, You metioned that you have symptoms and you want to know if any of us have the same symtoms or not. You didn't really metion any symptoms other than vaginal irritation. Like I want to know does it burn, it, tingles...what?? I think with more info on your symtoms and what causes your symptoms, we can try to help you more. I know you mention that you have to urinate more, I feel like that when I have eaten too many oxolate foods without taking calcium/magnesium vitamins afterwards. I want you to know that women with Vulvodynia knows to stay away from ANTIBIOTICS. For some of us, they are the cause of our Vulvodynia and for some, they make our vulvodynia worse! It could cause Leaky Gut, or just kill of your natural flora in the intestinal tract as well as your vagina. Be careful and good luck to you.
CommentLynn, You mentioned that you take calcium/magnesium supplements for the oxalates. Could you tell me how much and how often you take them? I have just started them, but I can't find any information on how to take them. Thanks, Shannon
CommentDo you know of anyone who has taken Lyrica while pregnant? If so please let me know asap at jenedge@aol.com
CommentHi Shannon. You know, I honestly can't remember the dosage of the Calcium/Magnisium vitamins I take because I ran out of the vitamins and I haven't really taken them in a long time because I haven't had too. But I just remember taking 4 vitamins afterward I ate any high oxolate foods. I just don't remember how may mg it was. Whatever it said on the bottle to take daily is what I took that day. And so if it said take 4 pills a day, I took 4 pills right after I ate high oxolate food. So just look at the daily dosage. You should be fine. See for me, when I eat/drink sweets, I immediately take Capryl vitamin (2) 50 mg each and that will prevent yeast infections. If I eat high oxolate food, I take my calcium/magnesium vitamin right afterwards (although I haven't had any high oxolate sensitivities lately. For my leaky gut, I take probitics once a day during a meal, in addition to that, I take 1 Allicin vitamin twice a day durring a meal. This all helps me with my food allergies. Good luck Shannon.
CommentHi, I'm in my early 20s and from the uk. I'm due to go for a Fentons perineum plasty in a few weeks, this is due to a 6 o'clock tear. Has anyone had this procedure and can give me some words of comfort? I'm a little nervous! Thanks
CommentHi All, This is my first time visiting this site and I am amazed and saddened to know that there are so many unfortunate people like myself that have been struggling with this painful and at times unbearable problem for years. I experience extremely painful burning sensation during and after intercourse and would apply a cold wet face washer to the area to try and ease the burning but to no avail. I have since discovered that APPLYING A WARM WET FACE WASHER to the area works wonders for me. Although not convenient if your experiencing the pain while out and about it gives me some comfort to know that I can get some relief while at home. I hope this works for some of you. Best of luck. Jaz
CommentTo Gemma: I've been posting on this site since guestbook thirteen regarding my wife's vulvodynia symptoms including a recurring paper cut like tear at the six o'clock position. She has had three vaginal deliveries and every time an episotomy was performed. Eight years went by without a problem then the tear started to occur. Her gyn did perform surgery to repair a rectocel(bulging of the intestine into the vaginal wall) , reattach some muscle damaged by the episotomies and to form a new scar. The procedure did not prevent future tearing in the same place. I tried to look up the specific prodcedure you mentioned but was only able to find the basic reconstruction mentioned. I don't know the specifics of your injury but I do wish you the best in results. We never found out why the skin began to tear or thin out and she did try many medications and lubricants. I found out years later that injury to the six o'clock position often indicates forced sex trauma. That was never the case with my wife and I but that's all the doctors seem to know. Good luck.
CommentI have had problems for many years 10 to be exact. I was diagnosed with VV about 7 years ago. I found a new gyno that said pevic floor spasms not VV. He gave me a script for Vesacare which is for bladder spasms. He said the me, I actually know quite a bit about this (i'm thinking sure you do) well he did. After about a week of taking the meds once a night for a week, PAIN FREE. I hope this helps someone else.
CommentTo Terri, I just wanted to ask you a question. I too have had vuldvodynia for ten (it started when I was ten years old) years, it burns when i urinate and the vuvlar area burns, stings and has a raw feeling all the time. Is that anything like the symptoms you have had? I think I'm going to ask my doctor to prescribe me Vesicare, i've never given it a try. I just wanted to konw what you're symptoms were to see if they were anything like mine.
CommentHi Allison. I just wanted you to know that the only time it hurts, burn, sting and feel raw when I urinate is when I have high oxolate levels. Then I take calcium/magnesium and that will make things better. You can take them for about a week, whatever the daily dosage says. Try it for a week and go on a low oxolate diet and hopefully that helps you. Best of luck to you.
CommentFor Marina. I am in the UK but under the care of Dr Metzger in the US. She recommends getting Lyme Disease testing done through Igenix. She says in her literature "Do not accept substitute labs since they have a high level of false negative results". You can look at their website www.igenex.com, but it is difficult to navigate. The best thing to do is to phone them (800 832 3200) or email them igenex@igenex.com and ask them to send you the kit for tests #188 IgM and #189 IgG Lyme Western Blot. You'll see fromthe website that they offer these tests in combination with others as well, but you just need these single tests. They cost $95 per test, but you only pay on returning the blood sample; they send the kit out free of charge. When you receive the kit, you need to write in the name and address of your referring physician and get their signature (I can't get this as I'm not in US, so wrote this on form). So you need to talk to your doctor about it and of course you need to get your blood drawn at the surgery (or a lab). I don't know whether they send the results to your doctor or direct to you, as I haven't returned mine yet. The instructions that come with the kit are not clear. I had to email Igenix twice for clarification. The kit contains two test tubes. Ignore the one with the lavendar top. You need to get your blood drawn and put into the tube with the red/black marbled top, which contains some liquid (serum separator). You need to return the completed test as soon as possible after drawing, so it's best to arrange your FedEx pick up in advance for the day of the test and send it for next day delivery. Hope this is helpful. Helen .
CommentAfter reading up on Natural Cellular Defense and reading some postings on others sites, NOT vulvodynia sites, and seeing the results these people have had with this supplement orderedsome Not from the site that was posted here. I only was willing to get one bottle to try it out. I received the bottle on Saturday and took my first 10 drops in water and within 2-3 hours after taking it my bladder started to hurt as well as my urethra, right at the opening of my urethra. I felt like I would pee myself just from walking. I did some reading on it and you are supposed to drink alot of water otherwise you can become dehydrated. I am pretty sure the reason I had this pain was from lack of water. I barely drank anything. I came across this info about it at http://www.newstarget.com/015232.html scroll down to the heading Rik Deitsch responds to critics. I called a few of the distributors I could find on the internet since the company was already closed and one said to lower my dose and that it can be a normal response to detox, one didn't know anything about it and another said it wasnt normal. I plan to call the company who makes the product and talk to them. Anyhow, the main reason I am talking about this product is because I have seen an amazing result since this incident. I have not taken it orally again until I talk to the company, but I did use it topically and am completely amazed at what has happened. I was bitten by a tick 2 years ago, I got vestibulitis 4 years ago so no its not related. Since getting bitten I have had a bump at the site that gets extremely itchy. There has been a hard bump under the skin for a long time now. I read somewhere that you can use the NCD topically so I gave it a try. Figured I spent enough on the product, lets see what it can do, if anything. I have only used it on my tick bite 3 times, the 3rd being this morning. I used it once a day only. One drop Monday, Tuesday and this a.m. and rubbed it into the bite. The hard lump was half the size as of last night. And it hardly itches anymore. I have been around here a long time and have laways promoted natural products after the nightmare of 11 gyns who gave me no hope. But I n ever promote a product unless it has done something positive for me. I was a t apoint where I could not walk across a room without crying, now I wear jeans and can have intercourse again. Not all the time, but way more than NEVER. :o) And if I find I can;t use this product for what it did to my bladder, I will use it on this bite for sure. I am completely amazed and so is my Fiance'. He couldnt believe the bump is so much smaller that you can notice it already. Next time I get my usual premenstrual zit I am putting a little NCD on it. LOL I will post what the company had to say about the bladder problem. So while I can't promote this product for VV/VVS reasons yet, I highly recommend it for tick bites that won't go away.
CommentThe lady I spoke to at Waiora was useless. She acted like she didn't care to be doing her job, so I think I'll take the advise of the distributor I spoke to and lower the dose and see what happens. Instead of 10 drops 3 times a day he said to use 3 drops 2 times per day and work my way up. How can you have someone who works for a company who knows nothing about a product. Unreal.
CommentTo Lin and Nicole, I think you are both from Philadelphia and wanted to send a note. I too saw the dr's you are referring to. . thought I was getting better. . was sent for PT at Penn but finally visited Dr Glazer. Believe me the biofeedback works. You can be drug/cream free and get better. NY is not that far. Just wanted to share my experience.
CommentAllison, My symptoms were, burning when I urinated, pain down my but and the back of my legs, pain during, after sex, could not wear tight clothes without making it worse, pain in the thigh area. lower back pain. My doc said that the buring pain was from muscle pain. Like when you work out and your muscles are hurting the next day, same type of pain. Oh yeah I also had swelling in the barth gland area for years, I think that was the reason for the VV diagnosis. My doc said that long term spasms can cause swelling anywhere in the vaginal areal. Mine was always in the same spot. I am so much better.
CommentHi Helen. Thank you very much for information. I already called them and they are going send me kit . But I think I never saw tick on my body.Did you ever had tick bite? Marina
CommentRead the symptoms of Fibromyalgia at www.FibroFix.com.
CommentHi girls, I read somewhere back about people who tried chiropactic medicine and did a treatment called ART. I was wondering if anyone knew of any chiropracter in the northern ohio/souther michigan area who did this? thanks, good luck to everyone out there.
CommentHi Susan! Would you be able to elaborate more on the biofeedback you did in NY w/Dr. Glazer? I did do it before in Philly and it did work I guess. I was also on meds. I went for about a year give or take, then released. And I guess I was good for awhile after (always still on meds.), then it comes back. I mean do you still go? I think I went once a week. It's hard w/having two little ones to find the time to keep going. Do you live in Philly? Thanks!
CommentI have had tremendous success with interferon injections for my vestibulitis. I have spent my entire life in chronic pelvic pain. Interestingly, I was later diagnosed (age 36) with fibromyalgia. I think there is a definite link based on support groups I have been involved in. I had 18 alpha interferon shots around the vulvar vestibule. I was literally 75 - 80% relieved of pain. However, these were given 9 years ago and the pain has returned. I need to find a caring doctor in the Chicago area. Anyone with information to share, or who needs info. on this can contact me.
CommentLin, Yes I live in Philly. Did you do biofeedback with the PT only (in their office?) Did you have a take home device? That is what I love about Glazer's protocol. You do everything at home. No need to go in every week. I have been seeing him for 6 months (3 visits) and have had a lot of pain relief. It's still not completely gone but I plan to do the exercises as long as it takes. I don't mind them at all. Good luck.
CommentPlease can someone recommend a doctor for vulvar vestibulitis in the Chicago area - preferably north suburbs? I am desperate....thanks!!! jeanne
CommentHi Susan! Yes. I just did it in their office. I had exercises to do at home (still try to) but the actual biofeedback was just in the office. That's interesting. Something to think about. Is it hard to get an appt. w/him and do you know if it's covered under insurance? Also, are you involved in any support groups in Philly or surrounding area? I tried to see if there were any here and I was told there weren't any.
CommentLin - It is not hard to get an appointment. Parts were covered under my insurance and parts weren't, but I didn't care I want to recover. The exercises without the biofeedback machine at home are useless, believe me. The PTs really don't understand this well enough. Let me guess, "do 15 kegels a day and stretch the area internally." Not enough. As for support groups I never looked, I just want to fully recover and put this behind me and forget it ever happened. :)
CommentHi Everyone Is anyone else concerned about taking drugs to get over the pain? It seems that so many of you are taking drugs and I'm just worried that some of you are just trying to stop feeling the pain, instead of trying to prevent the pain from occurring. I do pelvic floor exercises religiously every day and I visit a gynaecological physiotherapist frequently for biofeedback. I don't drink orange juice anymore since I find it flares up my vestibulitis and ditto for bread. Milk on the other hand tends to lessen the pain. I cannot have sex at all but my partner of 5 years and I are getting closer to being able to through my controlled diet and physical therapy. I have also found that my psychological health is really important too in controlling the pain. Take good care of yourself, Kathy xoxox
CommentHello Kathy, I totally agree that drugs, in most cases, only hide the pain and don't actually cure the problem. For at least a year and a half I was convinced that I had neurological problems (I'd had a history of this and anxiety problems). So, I started taking drugs - it took about 80% of the pain away. Now that I know it's candida, I've done acupuncture (the best thing ever!!!), diet and herbal supplements and hope to eventually get off my meds. But in the meantime I've been able to work and have new relationships (i.e. sex when I want) simply because I've taken drugs. I didn't want my life to stop, and for me taking the drugs let me live my life until I could actually figure out the problem - and that took me 3 years. For me drugs have been a life saver in the short term and it's good to know that I might one day be off them all.
CommentHi Jenn: I get Acupuncture too. I was wondering which herbs you take. I'm glad you've gotten some pain relief. Sue
CommentHi Sue, since I'm pretty sure I have candida I've just been sticking with the usual anti-fungal type herbal stuff. Garlic (2 caps 3x/day), clove tea one week, then pau d'arco tea the next (I rotate so I don't become immune to them), the strongest probiotic from the natural store, oil of oregano (although I don't think I'm taking enough, it burns), chlorella (I love this stuff, it's great for detox) and some other liquid that my natural doctor gave me (don't really know what this is exactly). I think that's it. What about you? What are you taking? Anything that works well? I sort of started taking everything while on the diet, so I'm not very sure what's working. I stopped acupunture recently since it was getting a bit too expensive for me, but it has been the only thing that's brought my pain level down permanently - without diet or herbs. Good luck!
Commenti am 2 weeks late on my period but i have taken 3 home pregnancy test and a blood test they all came out neg. i have a burning sensation in my uterus is there the possibility that i am pregnant my appetite has increased and i am getting sick on and off through the day is there that possibilty please email me and let me know
CommentHi Jenn. I have often wondered about acupuncture and I am willing to try it but I would like to know what it involves. Moreover, I live in New Zealand and so I can't really ask the people on this website to recommend anyone :( Anyway, can you let me know what it involves so I will know whether I should investigate getting it done or not. Thanks :)
CommentHi, I found this thread while doing a search on Natural Cellular Defense and Lyme Disease. I just recently signed up as a distributor and I have a customer that is using it to treat Lyme and I was trying to find some info for him. Since I'm new I don't have any of the answers for you yet on the product but I'm trying to learn as much as I can and can try to find answers if anyone has any specific questions. You all have been doing great research, everything that has been posted here to date is true. People are having amazing results with this product and I personally know someone that had a fast growing skin cancer and was told to get her affairs in order, there wasn't much that could be done for her. She heard about NCD and started taking the product last August. Today she is cancer free. The product has only been available since then so they are still discovering daily what it works on. The dosage is also up to the individual. There is a recommended dosage but people are experimenting themselves with what makes them feel the best. That probably acocunts for all the different answers being received. You do need to drink lots of water since the zeolites are like sponges as they remove the toxins from the body and flush them from the system. There are no side effects and it's all natural. I do listen in on several of the conference calls throughout the week and will see what I can do if anyone has specific questions. I'll check back here later. Thanks Vicki.
CommentGreat site!
CommentHi everyone~so i'm sitting here in a lot of pain, and I just realized that, since I will turn 21 soon and have had this horrible pain since the age of 10, that I have had vulvodynia longer than I haven't. It's a horrible thought, and I just want this nightmare to end. It's hard watching all my friends date and be able to have sex, knowing that it really wouldn't be fair to start going otu with someone who I couldn't have a future with. So I started doing research on the internet and I just wanted to run something by everyone to see if anyone knows anything about it. The only change in my life that I can trace all of this to, is that right around the time I started having pain I dental work done. I wore a metal lip bumper for two years, braces for three adn a retainer until about the age of 16. Now I"m 21 and i still have the pain, but i read online stuff about mercury toxicity from dental implants. Does anyone know anything about this? Could this be my problem? And if so, does anyone know if there's anything that can be done about it? if anyone has any information I'd really appreciate. thanks, and good luck to all of you.
CommentHi Allison, I posts you a message back on May 23, I don't know if you read it or not because you hadn't responded. But if you hadn't, go check it out, it may help you some. About your Dental work that you had done years ago that you think started your pain, the only thing I could think of is if you had some type of surgery where they gave you ANTIBIOTICS to prevent any kind of infection. Because for a lot of us, antibiotics was the culprit. Antibiotics kills off good bacteria in your GI tract that helps to fight off infection while it kills of the bad bacteria to prevent infections. Sounds scary and confusing I know. But when the good bacteria has been killed to the point that you don't have enough to fight off yeast, toxins and all of that, parasites and toxins can clog up your tissues and cause infections. Your body will be hard to fight it off because it doesn;t have enough "healthy flora" to conquor the yeast. Just read up about the harm that antibiotics can cause. Good luck
CommentHello Kathy - it was sort of a fluke how I found my acupuncturist. A friend just mentioned he was good, so I went. I found out later that he's one of the best in Canada - and definitely the best in Ottawa (where I'm from). He is a Chinese doctor trained in China. Usually, after 1 session you'll know if it's working or not. If it's not, then they are either healing the wrong thing or just doing it wrong. My doctor sometimes does a little trial and error to figure it out exactly how to heal you, but with my vulvodynia he got it right the first time. I just told him where it hurt, not the actual cause - candida (I didn't really know then) and he made the pain go away for a few hours. Each time it lasts longer and longer. I hope this helps, let me know if you have more questions.
CommentHello Allison, I'm really not sure what has caused your vulvodynia but there is a natural product out there that detoxes mercury from your body. It's called Chlorella - there are lots of things written about it on the internet you should read up on it. I started taking it three weeks ago, a natural path recommended it. It says to start with 15 mg, but the natural path said to do 5 mg for a month, then 10 mg after that, and if you need to work your way up to 15 mg. Within 3 days of starting at 5 mg my entire face broke out in a million little bumps. You could only see them really close up, but you could really feel them. A few days later they were gone, then a few days after that my skin started feeling amazing, people have even been commenting on my skin. I figure if something can make my skin that soft and nice looking, think of what it might be doing to the rest of my organs. I think the actual mercury detox might take a few months, but it's recommended for candida patients as well. Either way, it can't hurt, can it? Good luck
CommentHi Marina. I do have a scar (bump) from an insect bite, which I must have got sometime around 1993. I don't know what kind of insect it was and I didn't get vulvodynia till 2000, so don't know if there is a connection. I go to get my blood drawn tomorrow for the Lyme Disease test and will be sending it to Igenix in the States. This is just one of a battery of tests I'm having done and have no reason to expect a positive result, but you never know. How nice it would be to have a diagnosis and a cure just like that! Good luck with your test. Helen
CommentTo Allison: Go to www.activerelease.com for a provider list. Also, e-mail me directly if you want to discuss this further.
CommentHi my name is ceilidh and i am 21 years old and i have been diagnosed with vulvar vistibulitis I don't entirely understand the diffrence between this and vulvadyna all i know is that they both hurt. It's been a year or two since the pain started and it began with me getting chlamitia from an ex-boyfriend who lied to me about getting tested and after treatment for that the pain persisted along with regular yeast infections. I have no idea if this is related or not. My boyfriend works away so when he was away for a month i slacked off and stopped taking birth control for two weeks after my cycle...the pain stopped and when the youth clinic was open the following week I refilled my prescription for my birth controll but with a diffrent kind with diffrent hormones almost instantly the pain returned. It's now two weeks after my cycle and I have not been taking the pill so far the pain has left again. I don't understand the connection but it seems to be fixing the problem it was by fluke that i happened to come accross this. My Gyno had prescribed me a hormone cream that I used but found no releif has anyone ever heard anything about the pill causing this condition? And to the 18 year old girl who asked if anyone her age is affected by this yes I was at 19 and it sucked but don't pretand your okay for the sake of a guy if it hurts don't feel pressured. It took me awile but now i am open with everyone im close to about this, it's not an STD its a medical condition and nothing to be embarrassed about. At first I thought people would think anything in the pelvic area was from me being the type to sleep around (which i'm not) so i was embarrased about it but its no diffrent than any other medical condition. Knowledge is key. Good luck everyone and hopefully things will continue to look up
CommentHi Ceilidh, good for you for having such a positive attitude. I'm 30 years old and still struggle to tell people I am dating about what I have. Although, I have to say, I've started dating a few people since getting vulvodynia and only one guy had a problem with it - and it was only because I was taking medicine for the pain (don't worry, he's long gone :) As for your having pain on the pill, and not off the pill, one possible cause could be candida (yeast). I took Marvelone once when I was young, got what I now know was a yeast infection, went to the doctor after about two weeks, then couldn't get rid of it for 6 months. It went away on it's own while I was in Cuba - very weird. I think antibiotics and the birth control pill are the known cause for a lot of candida suffers. That said, it could also be something else, I don't know much about the pill - I haven't used it in years. But hey, I've been using condoms and they work great for me, there are definitely alternatives to using the pill. Congrats on finding your cause!
CommentThank you for your kind words. I do get yeast infections when i take antibiotics but this is not the same unfortunatly sex is unbearable and it doesn't make sense to me for this to be caused by my b-c because I've been on the pill since i was 16. It started 3 years after i started the pill and i didn't change medication. I noticed the flare ups are more frequent when i have anxiety attacks am really upset or stressed out. It sucks that they don't know what causes this or how to cure it I have been thinking of one day having a baby and I don't know if i could even stand to try to get pregnant let alone give birth! If not taking birth control keeps the flare ups down it will be fine but even when "cured" can it be compleately gone or just sitting dormant? I wish i understood more about this. At one time i was concidering the surgery but its so drastic and frightening to me. I along with everyone else on here just want it to go and stay gone for good. It sucks at any age to have this but I feel like im being robbed of my ever shortening youth. Sex is a big part of young relationships lucky for me this came on when i got back together with my old ex and he knows that i really did enjoy it to begin with. The worst part of when it first started was that he thought i just wasnt interested how do you tell your bf that all of a sudden it always hurts but youve been faithful. I know where my thoughts would have been. anyway I just concider myself lucky some of the cases on here are so severe it makes me want to cry, even my case makes me cry out of frustration when i can't make love to my bf it just isn't fair for any of us. Why aren't our problems important enough to do extensive research on? We can't live normal lives and I think for many of us that pain is greater than the pain below our belt line. If only there was a way to get the information out there unfortunatly it seems everyone has tried everything with no luck. It makes you wonder how many ppl go about their lives not knowing what is wrong themselves just dealing with the pain.
CommentCeilidh, I'm healing my vulvar vestibulitis with homeopathy. It takes its own time, but the pain dissapears slowly without any side effect. If you want to know more about, feel free to write me here or on my email adress: chiaramarano@hotmail.it I'm 32 and I do remember what is being 21, I wish you could get out of this as soon as possible. Greetings from Italy
CommentHello C. I read your posts and let me say that YES, vulvoydynia CAN IN FACT be caused by antibiotic usage. It can also IN FACT be caused by B C Pills. Antibiotics kills off your good bacteria (healthy intestinal/vagina flora) while trying to kill off bad bacteria such as Chlamydia. Once that is done, your healthy flora has been comprimised when you don't have enough in your system to help fight off infections, toxins etc.. B C pills can through your hormones off balance causing all kinds of hormonal issues too much estrogen can cause overgrowth of yeast, too little can cause dry skin causing it to tear... You have to read up on it and get more info. Be careful taking antibiotics/ B C pills while you have vulvodynia. Your systems can in fact get worse. But then again, I will say that I have heard some women say that while taking certain B C pills, they have gotten better. So you just may be in luck. Me personally, I have always used condems, never a day in my life took a B C pill. My vulvodynia was caused my taking antibiotics for JUST 5 DAYS for an ear infection. The ear infection went away, but now I am forced to stay on a diet and take probiotics until my natural vaginal flora get back on track.
CommentHi Susan, Yes, I have been doing PT. I live in NJ, commute to PA to see my doctor, and commute to NY every week for physical therapy. I originally askd my dr about biofeedback, and she said that it may be an option in the futre, but that because my muscles are so messed up it would be pointless to do it without PT first. You mentioned that biofeedback has helped you. Have you ever done PT as well?
CommentHi, I just entered this site after some time. I was diagnosed back in 1993. I am wondering if anyone has experienced bladder urgency with this vulva condition? I did when first diagnosed, had Dr. Richard Reid perform 2 laser surgerys on me and also changed my diet to a low oxalate diet. I recently had been put on a low dose birth control pill/about 2months and 2 weeks ago, and am no experiencing bladder urgency. I read on the website that some women have experienced their condition to worsen while taking a birth control pill. I have stopped taking it for 2 nights now. This urgency comes and goes, but is very uncomfortable. Was I right to stop taking it. My OBGYN has determined NO bladder infection, she recommends I go see a Urologist. I would really like to know if anyone has experienced this and will the urgency go away with some time after stopping the pill? I also take calcium pills, and just took 2 more tonight. I usually just take 2 in the morning. When I do get bladder infections, they are the worst! This urgency now is driving me crazy. I dont want to see a Urologist and take all these tests, if it could be from having taken the pill and if it will go away after stopping it. I would apprciate any help anyone can give me here. Thankyou!
CommentI have a question. Why is it that when people have chronic pain in their back, it is okay. If you have a chronic pain in your head, like daily migraines, it is okay. If you have chronic pain in your joints, it is okay. But if you have vulvar chronic pain, everybody looks at you like you are crazy. As if you want to have that pain, as if it would make your life better. What would be a woman's motive of coming up with a story of chronic pain down there? I think that the major culprit in this denial and ignorance is medical community. If there was a wider acceptance of the disease, if there was more popular literature out there on vulvodynia, if magazines like Cosmo, Lady's Home Journal and others that seem to find space to publish articles on something like "new advice from Laura Bush on how to raise boys" or " Joel Osteen how to make something out of nothing" stuff, would publish articles about women that have been suffering for years, looked upon as outcasts and lived without any hope of support and understanding unlike any other people with a cronic disease, things would have gotten better. Sorry, just tired of hearing that my pain is stress induced, or it is all in my head, or if you fix that part of your life, that pain is going to go away. Ha, I wish they could live one day like I do. However, everything is seen by someone above, everything is noticed...
CommentTo Janna: Of course the pain "down there" is not imagined, neither is the burning, tearing and other symptoms of vulvodynia. The problem with acceptance of vulvodynia is the ignorance of both the medical community and the general public in addition to the area of the body affected. Our society is so immature when it comes to matters of a sexual nature that we either run and hide or laugh like school kids. Years ago when a doctor on the Oprah show mentioned the word "vulvodynia", Oprah began to giggle and changed the subject. We hear words of violence and profanity on television but not words like " vagina, clitoris, vulva or vulvodynia". The same way other ills of our society have gotten attention and funding for research, vulvodynia must come out of the shadows and be spoken about. I have read about it here and seen it in my life how when someone has a chronic illness people seem to distance themselves. I know women who do this when a friend is getting divorced as if they will "catch" the divorce. It's like that with vulvodynia, you will find some people close to you who are compassionate and supportive and some who will shy away and not want to hear about your personal problems. I don't know how things will change for the better but I believe it will take time and effort. Talk to your doctors, talk to your friends and family about this unspeakable illness. Make Vulvodynia deserving of attention by giving it attention. Best of luck.
CommentHello all! I know I've read in past posts about accupuncture. I read this every day and forget some things (it's probably all the meds. I'm on for this horrid disorder). Anyway, can anyone tell me about any experiences w/accupuncture? Thanks for any info.! Lin
CommentHi guys. My vulva sometimes feels like it is litterally on fire. It feels like someone stuck a curling iron up in my vagina. But the pain mainly comes from near my urethra. Is there any type of herbal suppliments that you know of that I can take for this nerve pain? I have saw every Dr and Specialist you can think of. The pain is brought on by drinking water, eating regular foods, staying away from sugar, yeast, gluten. I'm on a very strict diet, but it's like when I eat or drink any thing, anything that enters my body, I get a response of burning in my vulva. Like heat, like my vulva is being electricuted. I have seen several nerologists, gynecologists, gastrointestinal specialist....no one has helped me. Anyone has any good info on some good herbs or whatever that will keep my nerves calm when I eat/drink anything? Please out of the kindness of your heart, let me know. God bless. Thank you
CommentKiesha, I do cure myself with homeopathy. I will not get tired repeating it, doesn't matter who wants to hear me or not. There are certain homepathy remedies that can calm down your nerves. But important is to start healing the problem from the reason to the symptoms, not from the symptoms and then trying to guess where could be the reason. I do have best results, no side effects. I don't look for insurances, I just pay from my pocket, because if not cured well this problem may persist for lots of years. I, personally, don't have time to lose it. So, each one of us is choosing for her self. Wish you all the best! Chiara
CommentHi Chiara! So are you cured? If so, how long has it been now? Can you tell me about the symptoms you had and the process you went throught to cure yourself? Thanks! Lin
CommentHello, Lin! Well, I'm still going on with the homeopathy, not yet completely recovered. Here is how it has started with me. It was beginning of July 2004, when I've got my first symptoms-scratching and burning externaly, and pain at the entrance of my vagina. I've passed 3 gyneacologists, indian, bulgarian and italian. Indian, because everything has started in Oman (there are many indians working), bulgarian because I am bulgarian and I've been visiting my country, and italian because I do live in Italy.So, first tests (guided by the indian) for fungal infection and other bacteries - negative. Given cure - for bacteries with large spectrum, fungal infection and vaginitis. Results - 1 week of feeling great and after all has come back stronger. I've got also cystitis. Second tests (guided by the bulgarian) for fungal infection and clamidya - negative. Given cure - for fungal infection. Results - much more teasing and disturbances. Third tests (guided by the italian) for fungal infection, clamidya, PUP test (for cancer on the uterus) - negative. Given cure - for vaginitis. After all these trials I stoped having the external burning and itching, and the cystitis has gone away. But a strange pain at the entrance of my vagina down side has remained, and I started reading all possible found in internet about this symptom I had, in english and in italian. So, studying slowly by myself I discovered I do have vulvar vestibulitis, and I started analyzing how I got it and why I got it. According to these thoughts I decided to ask for help the homeopathy and here am I. I'm curing my homeotype in general + the symptoms I have. Started at 27 of January this year. Still not completely recovered, but getting much better. I'm periodically having small regretions, worsenings, each and next one is getting shorter and weaker. That's how it has to go on. I still have fears of the pain I do remember very well, so based on that I am waiting to get completely recovered to continue my normal sexual life. Not useless to say, that after few trials for having sex with my husband since July 2004, I did completely refused feeling pain. I don't look for any insurence, I just pay every 2 months from my pocket. I take 4 types of pellets, given to me by my homeopath, personally for my case and my homeotype. So, it costs me something like 16 euros every 2 months. The homeopathy I follow is "Boiron", it's very important to underline it because I know there are many other variations around the world. What else? Ask me:) I'm here to give hope to every one of us, knowing how terrible is this condition, and being a fighter as a character. Greetings from Italy! Chiara
CommentHi Chiara! Wow! Thanks for all the information. Please keep us all apprised as to how you make out at the end of this journey! I'd really be interested to know!
CommentHi Chiara! I had another question. Are you doing anything else along w/your homeopathic plan? Like are you following a certain diet or doing any type of physical therapy or biofeedback? Thanks again!
CommentHi Keisha and Janna - most of my relief has come from alternative medicine. Diet, acupunture and supplements. I've had so many specialist tell me either do surgery, where cotton underwear, or one that wouldn't even look at me. My doctor's were running out of specialists to send me to. But with natural medicine there are so many more options, I wish I had started there 3 years ago. Although, it was an environmental specialist that first identified that I had high candida levels - they are, well in Canada, fully covered. Whereas natural medicine mostly isn't. Lin - I've had amazing results instantly with acupunture. If you have any specific questions send me an e-mail and I'll get back to you.
CommentThanks Terri adn everyone who answered my questions. I really really appreciate it, it's hard trying to figure everything our for ourselves. I just have one more question for you, Terri, if you're still checking hte site. I am going to my doctor on Friday and wanted to mention Vesicare, but I"m not sure what kind of dosage to suggest or if she will know that. What dosage did your doctor prescribe you? I'd really appreciate it. Hope you're still doing well, and I hoep to hear from you soon.
CommentHello, Lin! The only think I follow is to stay away from caffein and all products that contains it. Because the caffein (according to the homeopathy) has the ability to undo the benefits of the treatment. That's all:) The patience is the biggest part of the whole proccess, it's really dificult and we all know it. But it worths trying, especially when the results are always positive, isn't it?:)
CommentThe symproms of urinary frequency and urgency are know often to accompany vulvodynia to varying degrees. At their most serious they can be a sign of Interstitial Cystitis. You can find out more about IC and its link with vulvodynia on the internet. If you do go to see a urologist, it would be useful to discuss these issues. I suggest you take some information with you as the urologist won't necessarily have heard of vulvodynia. In the meantime, there is something you might consider to help relieve your symptoms. Dr Deborah Metzger, who is a specialist in such women's health problems, recommended Quercetin to me for urinary symptoms. You won't find much information on it by searching the internet. It is a natural substance, so you don't need to worry about taking it. Thorne Research make capsules called Quercetone, which contain Quercetin. You can find these by searching on the internet. If you are in the UK, you can get Thorne Research products through Health Interlink www.health-interlink.com. They don't display all the products on the website because they are so numerous, but you can email sharron@health-interlink.com to ask about availability and price. I haven't tried Quercetone myself. Although I do have urinary frequency, and it is annoying, especially when I'm out, I don't consider my symptoms to be severe (unlike my vulvodynia, which ruins my life every day). Also, I'm trying to conserve my money for all the tests I'm currently undergoing, following Dr Metzger's programme! One more thing, Dr Metzger said that the Quercetin capsules are made of gelatine and that some women with vulvodynia have a reaction to this. So, you can open the capsules and empty the contents into food and drink. I do hope you find some relief from your symptoms. Helen
CommentLin, I forgot one thing that seems to be important - taking homeopathic pellets makes me drink atleast 1l even 1 and a half l ot water. If I don't drink this quantity, the pellets start simulating the symptoms of cystitis. I discovered it by myself, because I naturally have a small dificulty drinking water. I could go with only 2 glasses of water during the whole day, without feeling it. And the other thing that I follow is that I stoped wearing tight trousers and rude jeans. Only soft and little loose stuff, one measure bigger than mine. Like this I don't give any pressure to my vagina, and it's really breathing. I think we all know it, but important is to stop the rude hard jeans, and start using the soft versions. It really helps! Greetings from Italy. Chiara
CommentLadies, I have been having SEVERE symptoms for almost a yr. now. I'm on 1600 mlgs. of neurontin and it is not cutting it anymore. I'm off to a new dr. next week. I have terrible symptoms about 3 hrs. after a bowel movement....burning and pulling in the rectal region. When that subsides, my vaginal region is on fire!! Does anyone experience similiar symptoms? BTW..Chiara sounds like you have something going here with the natural route. Neurontin has me in a "haze."
CommentYes, Sara, I am using only homeopathy. Nothing else:)
CommentTo Sara: Hope you are not offended by my responding to your post but, have you been checked for a rectocel? My wife had been getting stabbing pain in her vagina, rectum and it was caused by a rectocel which is a bulging of the intestine into the vaginal wall. She had this corrected by surgery during an operation which was supposed to repair some muscles damaged during episiotomies. Best of luck.
CommentFrank and members.....I don't mind Frank. Any information I can get my hands on at this point is valuable. The pain rectally is unbearable. The dr.s just say that I don't have hemorroids. I can stand the vaginal burning. It's the rectal pain that wipes me out. I had similiar rectal pain when I was first diagnosed with VV. Somehow elavil got me pain free for 5 yrs. Then, last summer all the pain came back. It hasn't left yet.I am VERY debilitated this time. I am trying to work, but I cannot concentrate the pain gets so overwhelming. Chiara, so you think homeopathy could help this severe rectal/vaginal pain?
CommentSara, you may give a try with the homeopathy. The fact that the pain has come back to you, means that the reason has not been cured. You've been treating only the symptoms.The logic that is followed by the homeopathy seems right to me. Of course, I can not promise anything, not being even a homeopath specialist. But I do believe in these treatments. Because the body is a machine, biological machine. If one small thing goes wrong and we don't catch at the beginning, then the machine starts breaking untill it falls completely a part at the end.
CommentHello Sara, I have vulvodynia and rectal itching (very painful itching, and tears that bleed and stick). For me as well, the rectal itching is much worse than the vulvodynia. It's always worse after a bowel movement and the pain seems to be either vulvodynia or rectal itching. I found a few things that have helped me with my anal itching 1) cutting out caffine gave me instead results - within a few days 2) acupunture 3) my acupunturist told me to avoid refined sugars, dairy and seafood - that really help 4) anti-depressants, although for me this only hides the symptoms and now 5) candida diet.
CommentSorry, made a mistake, it's tears that bleed and STING (not stick)
CommentI have been checking this site on & off for quite awhile now, but I have never posted. I feel for everyone that has this horrible condition. I have had vulvodynia for almost 3 yrs now. I am mainly only in pain when I urinate & have intercourse. My boyfriend/fiance has been soooo supportive through everything. I am unable to have sex without wanting to cry out of pain. So we don't. Even though he tells me that it's okay, I can't help but feel horrible & that I'm not a whole girlfriend to him. I have been to many obgyn's & dr's in my area with no help. They have diagnosed me, but noone has offered any solutions that have worked. I feel that my problems are yeast/allergy related. I have suffered from yeast infections on & off since I was 13 yrs old & I am now 25. Right before my condition started one day out of nowhere I developed severe allergies. My lips on my face would swell up & I couldn't pinpoint what was causing it. My Dr. prescribed me the steroid prednisone which made the swelling go down. I went to an allergist & discovered that I was allergic to many different things including peanuts & hops. I started getting allergy shots & started avoiding the things that I was allergic to.....but one day out of nowhere I felt a sharp pain down there & the rest is history. I feel that there has to be something causing this in my body, therefore I don't want to just take a medicine to just try & cover it up. I am interested in exploring natural cures for this. I have taken oregano pills for the yeast & I can honestly say that they really helped with that. I experienced all the die off syptoms as well. I also take acidophilus daily. However, if I don't stay away from sugar the yeast seems to always come back. I feel like I will never be able to fully get rid of it. I wonder though if maybe my nerves are so damaged beyond repair that they might not be able to heal themselves & I might have to have surgery to get rid of the damaged cells?? It is hard to find any dr's that even know about vulvodynia let alone specialize in it. If there is anyone out there who has had any luck with any natural cures or diets or surgery please let me know. I know they seem at two opposite ends of the spectrum, but I am willing to try anything at this point. I know each situation is different & going back through all my history & all the research I've done these seem to be the most logical choices for me right now. Thanks for listening & I hope someday we can all find our cure for this.
CommentTo Helen: Thank you for responding to my inquiry. I have stopped taking the birth control pill now for 2 nights, tonight will be the 3rd. The Dr. said a period would begin in about 2 days, and it has. After the 2nd night of not taking the pill, I began to feel much better. The urgency feeling improved greatly! Having my period now and I would say I have the usual pressure feelings that one gets from being on your period. This usually lasts the first 2 days, as I am heavy then. So, from what I can tell, a birth control pill may have caused some area inside to swell up and put great pressure on my bladder/or it could have even been my bladder it'self and that after a few days go by, this swelling will decrease and I should feel back to normal. I have set up to have a D & C now next week to see if that will help the period problem of having them heavy, last 11 days and return again in 2 weeks. If that does not work, then I will be looking for a hysterectomy. If you or anyone else out there should know of any problems arising from having a D & C or a hysterectomy due to having vulvadynia, please let me know. If I can avoid any more painfull episodes I should like to do so. Also, Helen I live in the United States. And again, thank you so much for your help. I have taken down your info, just in case I have anymore problems with the urgency. This is some kind of condition eah? In reading many of these comments, I have learned this condition comes in many different degrees. I have prayed and prayed that my daughter does not get this. She is 23 now, single and does suffer from allergies from tarter contol toothpast, perfume and the like. I however, do not. She takes after her father personality wise, so hopefully her body chemistry will too!
CommentDoes anyone know of any web-sites that offer interesting food ideas for people on a fairly strict candida diet? Like plain yogurt and dill together make a great dipping sauce for veggies, or crushing sesame oil, salt, garlic, ginger and shallots together into a paste for stir-frys is awesome. I'm just looking for alternatives to some of the stuff I'm eating, and would also like to share some of my ideas. If anyone knows of any web-sites great, or if you want to share ideas with me, let me know (e-mail is above).
CommentKathy, I had a hysterectomy several years after being diagnosed with Vulvodynia and it didn't affect my V. pain one way or the other.
CommentI'm glad your urgency symptoms are lessening. I don't know anything about vulvodynia and hysterectomies, but I do know of someone who had conquered her vulvodynia, then had a hysterectomy and the vulvodynia returned as a result of having HRT. I can't remember what it was in particular about the HRT she was taking, but it is something to be cautious of (like birth control pills). Also, there are natural alternatives for dealing with heavy bleeding. I don't have the details, but it is worth doing some research to try and avoid a major operation. Have you thought of consulting a naturopath?
CommentI found this website www.wholeapproach.com, which has lots of information about candida and diet and has a lot of recipes. Even for those not following a strict candida diet, but wish to cut out sugar, the recipes are worth a look. Yesterday I made some gluten, yeast free bread with one of the recipes. It had pureed cabbage in it, but it was delicious (the recipe says use all buckwheat flour, but I used half that and gram flour). Hope you find some good ideas for things to eat.
CommentHi all! Jenn - I am also on the yeast free diet, I don't know of any good websites, but I found the book "The Yeast Connection" to be very helpful. It's kind of old, but the theories and the diet still holds true. Also, if you go to a big bookstore like Barnes and Noble, etc., they usually have a section on different types of diets - I've found some good recipes that way. (FYI - I've been making a great salad dressing from: lemon juice, lime juice, chopped cilantro, olive oil or flaxseed oil, salt, pepper and a crushed garlic clove. I put it in the fridge, let it sit for an hour, and then remove the garlic.) Sarah - I can relate to a lot of what you are going through, especially the relationship issues. I also have fears about nerve damage. I have had symptoms of this for almost 15 years, but have just recently actually started treatment with a doctor who specializes in pelvic pain. Anyway, feel free to e-mail me if you want to chat or vent. :)
CommentJust to give everyone an update. I got surgery for my v v s a few years back and all the "yeast infections" and pain and everything went away. I suffered with this condiction for 9 years! I'm due to give birth to my 2nd child any day now. Just to let all of you know surgery did work for me for v v s. Interferon shots however did not. And boy were they painful!
CommentBy the way, someone mentioned Dr. Benson Horowitz in CT and he was the one that did surgery on me in 2002. I am completely cured of my v.v.s. Don't know why I waited so long for surgery - 9 years!!! I tried everything else - I'm telling you those interferon shots were HORRIBLE. Those Boric acid capsules were no joke either. I'm now painfree. Good luck to everyone.
CommentCongratulations on being free of pain... 9 years is a long time to wait. I just had surgery in February (with bleeding problems not related v.v.) and again just on May 8th. All is going well... I can tell there is healing down there and in a good way already. I can't even feel when the doc pokes around down there... I'm very encouraged... but still have a road ahead of stretching scar tissue and then the mental block I've built up with my husband. Congrats on your 2nd child - I have two lil' "angels" as well :)
CommentI have been noticing some white specks in my underwear, especially in dark underwear.They look like maye dry skin, but some look long and straight...has anyone else at all noticed white specks like this?
Commenthey everyone I've been reading about this candida diet and was hoping someone could fill me in on what it involves exactly. me stopping taking the pill has helped with the pain and is improving however since stopping the pill i believe to be getting yeast overgrowth now I think it may be my body trying to balance itself again. Also is there anything you can take to balance hormones and yeast? natural would be choice but I'll do what it takes to get myself back to normal.
CommentHi Ceilidh, I was on the yeast free diet awhile ago. It basicaly involves cutting all of the sugar out of your diet & also any food that has yeast in it. It can be very restrictive, but it is very worth it to get rid of the yeast. Nicole had mentioned "the Yeast Connection" book which I have also read. It is an older book, but there is alot of good info in it if you would like to start a yeast free diet. You can probably even get it at your local library. Also, I know you had mentioned you were looking for more natural treatments. I am not an expert, but I had also been taking oregano pills at the time of the diet & they got rid of the yeast. Start slowly with them though if you do decide to try them, because you will experience bad die off systems at first, which the book explains all about. Good luck! I am probably going to need to start this diet as well again, because I had to take a round of antibiotics awhile ago(which I regret) & I haven't been doing so good on not eating sugar lately. It's so hard!!!
CommentHello all. I just wanted to ask what is that over the counter medicine that some of you take for fibromyalgia? You said it starts with G? I think it is something called Guifisan. I would like the spelling of it and I would like to know more info about it. Does it work for burning sensations? My vulva feels like it is on fire. I drank a glass of water this morning and within 5 minutes, I immediately feel the burning of the vulva pain. Please give me some info on the medication and if you feel that it will help with soothing the burning vulva. Thanks much!
CommentHello Frank. Thank you for that info on the Fibromyalgia. I am really nervous to take it. I mean, becuase I wonder if it would help my food allergies. I mean my vulva sometimes (not all the time) may burn just after drinking water. That hasn't happened to me in a long time, but it did yesterday. It sometimes burn after I pass a bowel, but that is rarely. I try to keep my diet in control and take vitamins so for the most part, I'm ususally okay. But now, it is trippin again and I am constipated. Anyways, thanks again. Hope your wife is doin well.
CommentHello all. I was just wondering, have you all seen that "Advil" commercial? It' suppose to work for all your pain. Do any of you think that will sork for Vulvodynia pain? Another thing, I have seen a commercial about "Requip". It is for restless leg syndrom. But the symptoms of RLS are EXACTLY of those of V V pain. The symptom are tugging/pulling in the calves, burning/ aching, tingling, creapy crawly feeling and twitching. The symptons occur ususally while sitting for a long time or trying to go to sleep amongst other time. They talk about the drug is used to calm aching muscles, calms the nerves in your legs. Doesn't it seem it may HELP calm the muscles and nerve pain in your vulva as well? There is a # to call to get more info on this drug. I am going to call them tomorrow durring the day to ask if it may help for vulva pain. For any of you who wants to get more info, just key in the word "Requip" in Yahoo/Google or key in Restless Leg Syndrome to check out how the symptons relate to vulva pain symptoms- just in a different area. Please let me know what you all think. We just may be on to something here.
CommentThanks Helen for the web-site, I've checked it out and will definitely try some receipes. The zucchini muffins sound soooo good. And Nicole, thanks too. I've ordered The Yeast Connection book, can hardly wait to take a look at it!
CommentLynn, I saw the commercial for Requip a few weeks ago and wondered the same thing as you. I have also seen the commercial about HPV, "Tell someone." Has anyone caught the line that says something to the effect that "in most cases HPV goes away on its own..." I'm not trying to stir up any debate, but did soething happen and I miss it? (I believe my problems are due to vulva surgery I had due to precancerous cells caused by HPV many years ago.) A quick update-I have been off all meds for 3 months. I had been on desipramine, topamax and BC. Stopping the BC I believe helped. I also believe, in the end, the other drugs were inadequate for me. I feel ok for the most part, but still have bouts of itching and intermittant nerve flare ups that remind me of tiny pins poking at my vulva. I use 5% lidocaine at night. Was told it would retrain the nerves. Nothing yet. Don't know what else to try,,,at least things are not as bad as they has been in past months. I am thankful for that.
CommentIt's funny you mention that Lynn. I have had vulvodynia for ten years and have always thought there might be some connection to the fact that I cannot stop moving my legs, especially at night. Please let me know if you find anything out. Thanks!
CommentHello guys. Well I just wanted you to know that I just contacted the makers of Requip. The guy that I spoke to by the name of Vinny, was SOOOO NICE AND UNDERSTANDING. I told him about Vulvodynia and he says that he has IN FACT heard of this condition. This guy was as Virusologist- he specializes he viruses and says that women have come in his office with Vulvodynia. But he was honest to say he doesn't know much about the condition. I asked him the question we all want to know, if the Requip will help vulva pain. He explained to me that it is a possibility. Here's the thing. He said that Requip is for "Depletion or Deregulation" of Dopanine levels in our brain. He said that basically if we have some problems with SPECIFICALLY the Dopamine neurotransmitter, that will cause the Restless Leg Syndrome symptoms. If our Vulvodynia is caused by Dopamine Depletion/Deregulation, the Requip SHOULD IN FACT WORK! But if our Vulvodynia pain is caused by something else, then the Requip most likely won't work. Does that make since to you guys? I mean he is saying that the Requip will help stablize/regulate the Dopamine levels in your brain and that will stop the Restless Legs. I asked him if the other neurotransmitters such as Norepenephrine, Seretonin play a role in this, he says no they don't. It's only about the Dopamine. I asked him if there was a way that we can get our Dopamine levels tested and he says that he was not aware of any special test for Dompamine levels. I can tell you that one Dr I went to in California tested 3 of my nuerotransmitters with a HOME TEST KIT. The results came back that my Seretonin, Norepenephrine and Dopamine levels were all low. But when I mentioned to him about the tests, he said that that is news to him because he didn't know neurotransmitters can be tested. Anyhow, but when I was tested, it was due to nerve pains in my brain at the time, my vulva pain was not there. I was free of vulva pain for about 3 years when I began to have nerve pain in my brain. Anyways, well I tried I guess. I'm going to go now. Let me know what you all think about that.
CommentHello Again, I haven't posted in ages! Here's what I have been trying, and what has been working. The low oxylate diet. For all you ladies out there even considering this I firmly suggest you try it, and order the Low oxylate cookbook, which has an index of ammount of oxalate in most common foods. And for those of you who are on this diet good for you! What makes the diet definitely NOT work you ask? BREAD. Whole wheat bread is a KILLER. White bread is not so bad, but if you eat more than a tiny bit a day of most kinds of grains you will BREAK OUT DOWN THERE. So don't do it. I know it's hard, this is the only thing that makes me fall of the wagon still. Drink LOTS OF WATER. I am talking 3 litres of day here. And be strict about it! The goal is to get your urine running clear. Don't know how much three litres is? Buy a Nalgene bottle. Calcium and Magnesium citrate. Just calcium citrate 300 mg 3 times a day will probably make you constipated. Magnesium offsets this. If you want you can alternate Citracal (a really good brand) with cal mag cit. Another thing. Not all brands are created equal. Some will help you heal faster...takes me about 1-2 months depending on how severe my relapse is and how strict I am on the diet. Probiotics. SO FAR I am still uncertain about this. BUT I will say, I have been bad with my diet lately, and I have not crashed and burned as much as I should have. And I can touch that area an feel a difference in tissue strength. What I am trying next. I suspect I have a copper difficiency (because it always stains my skin) so I am going to buy a 100% copper braclet to wear. No harm in trying right. It's cheap and there are no permanent side effects. Some people believe that a mild copper difficiency can lead to connective tissue disorders and arthritis among other things which is what vulvar vestibulitis is. 100% Wild Salmon oil once a day. Helps even out your mood swings. I also have anxiety disorder and this has almost completely cured it (in addition to the occasional cognitive behavioural therapy session). I really hope this helps everyone. Email me if you have any questions. Oh the only prescription medication I am taking for my vestibulitis is a compounded cream made out of 2% sodium cromoglycate in glaaxol base. It dosn't hurt, sting, or bite, like all the other creams I have tried, and it helps with the inflamation.
CommentI have no been to this guestbook in quite some time. I posted a long while ago about having great success with taking Effexor for my vulvodynia. Effexor is not a fun drug to be on but I would take it again in a heartbeat. It complete stop my horrible intense constant vaginal burning. It helped to numb the symptoms of my vvs while I was on it. Since I've been off the effexor (for 5 months now) my vvs symptoms have come back but it isn't so bad. The main problems I have are, occasional vaginal soreness, stinging/burning after sex (especially if my partner cums inside of me), pain with sitting. The bartholin's glands are still swollen and the only solution I've been offered for vvs and the swolleng lands is surgery but I'm very hesitant to proceed with any type of surgery. In the mean time I use two recipes, an oil and an ointment. ************ This is the ointment I use vaginally and on my vulva. I take an empty glass amber jar and mix 3/4 comfrey ointment (the greener the ointment, the greater amount of comfrey that's in it), 1/4 Dr Christofer's Complete Tissue and Bone Ointment, 15-20 drops of tea tree oil, 2 oz of Sea Buckthorn oil and 1 oz pure evening prime rose oil. At night, I usually insert a little bit with a syringe and massage in or squat and use my fingers to massage into the tissue. Sometimes I add other herbs/oils but that's the basic mix Not only has this helped to streghten my vaginal tissue, made it super soft and supple, it helps with day to day pain, irritation after sex and makes the tissue thicker and tougher.*************** I use a 4 oz container. This is an estimation of about how much of each oil I use: 1/2 container Jojoba Oil 1/4 pure Sea Buckthorn oil 1/4 pure Emu oil 10-15 drops of St John's Wort oil (alcohol free) 10-15 drops German Chamomile Oil (blue) 10-15 drops of Tea Tree oil 10-15 drops of Neem oil (optional) ***************************** Properties of each oil and why I've chosen to use them: Jojoba oil: soothing, healing, antibacterial, moisturizing, lubricating, this oil is cloest to our skin's natural sebum Sea buckthorn oil: promote cell tissue regeneration, thus aiding in the healing of wounds, and restoring skin tissue, extremely beneficial to mucous membranes, full of natural antioxidants and essential fatty acids, can be used for the treatment of vaginal infections Emu oil: natural anti-inflammatory and is an excellent transdermal carrier of ingredients through several skin layers. In addition to reducing swelling and stiffness in joints, it reduces bruising and muscle pain. St John's Wort oil: Anti-bacterial, anti-inflammatory, pain reduction and promotes tissue repair, reduces swelling German Chamomile Oil: soothing, calming, anti-inflammatory, useful for inflammation of skin and mucous membranes Tea Tree oil: antiseptic and anti-infective, kills fungus and bacteria, wonderful for treating/preventing vaginal infections Neem oil: an excellent wound healer that helps the body to rapidly create collagen fibers to close to wound, kills sperm, is antifungal
CommentHi JS: I'm glad you're doing well. I've read about Sea Buckthorn Oil someplace before. How did you learn about all the different oils and how to mix them? Did you order them online or were they available at a health food store? I use Emu Oil already and it does reduce my burning and swelling, but I've never tried the other oils. My 24/7 pain is gone, but I still can't have sex or a pelvic exam without excruciating pain. Thanks for the info. Sue
CommentKeep this site for ladies to read and see if they can see their pap.
CommentHi ladies what brand of emu oil is better to buy? I tried one and it irritated my skin. thanks Marina
CommentHello there. I learned about these oils and mixing them by taking the time to do my own research online as well as in some essential oil books I have. Someof the oils are readily avaible at most helath food stores (tea tree oil, emu oil, and saint john's wort for example) and some I have to special order online (german chamomile). I'm very happy to hear that you have gotten a handle on your pain too, I hope you continue to only see an experience improvements. From the oil mixture I made I find that the two most benefical oils are emu oil and sea buckthorn oil. I forgot to mention this before but if anyone wants to try out my oils but make a little mixture and do a test spot, I would hate for anyone to have a horrible reaction to anything I have suggested.
CommentI keep hearing about how vvs might be related to a vitmain d deficeny. i was wondering if anyone had any informative links or interesting informaiton to share with me. please feel free to e-mail me. Also, I would like to recommend a lube I used before i made my own called, it's called Nude Organic Pesorsonal lubricant. It has some very benefical ingredients which include: Certified organic Co2 extracts of German Chamomile Calendula and Seabuckthorn berry, Organic sunflower seed oil, Meadow Foam Seed oil, Apricot kernel oil, Palma Christi, Natural Beeswax. Sal Butter, Shea Butter. I added emu oil and some extra sea buckthorn oil to my lube and keep it in the fridge. It solidifies a little bit but that's no big deal, it goes right back to room temp when I remove it from the fridge. The coolness offers extra relief.
CommentIs there anyone that finds that absolutely anything topical irritates them. I've had a lot of itching in the last 8 months and I find that even steroid ointments and emu oil (which is meant to be tolerated by everyone) causes much burning.
CommentLiz, before i went on the effexor I couldn't not put anything topically onto my vulva, even wearing panties caused extreme pain most pain. Everything that touched my vulva felt like sandpaper on fire. The vulvodynia was much worse than the vvs. After the medication, I can apply to topical herbal ointments and oils without a problem. Some other things are still uncomforitble though.
CommentHello Liz, Vanicream works for me.
CommentI hope I can help someone with my experience. I used Preparation H (which contains benzoic acid) which I found out later on, I was allergic to. The itch, burn and redness got worse and I used Lanacane (which contains benzocaine) which I was highly allergic to. Each time the itch and pain got worse, I put more lanacane on and since it is a numbing agent, I repeatedly burned my skin. I went to a dermatologist after the pain spread throughout my vaginal, rectal, and clitoral area, he gave me prednisone. It disappeared. About a week and a half later I had a terrible itch starting, which, I thought was a yeast infection starting from being on the prednisone. I used monistat one, it relieved it for about 3 days, which, I heard from reading about vulvodynia, can happen. I did another, and this time it did not go away, which led me to my gyn who gave me a yeast and bacterial test which came back negative. He then sent me to my md who took five viles of blood and tested me for HIV, Lupus, autoimmune disease, you name it, all negative. The pain was coming back like from the original allergic rash, redness was in certain areas unlike the original rash it was located to the vestibule, clitoris and labia. I was then sent to an allergy/dermatologist specialist. By that time I had it for a month and a half, was in terrible needlelike pain and desperate for some answers. I was online every night 2 or 3 hours searching on my own and found research on vulvodynia. I mentioned it to him and he said I might have something and put me on gabapentin. I take two a day @ 300 mg, on the bad days I was taking three. I can only say all during the two months prior to my visit and ever since, I use a chlorine filiter in my shower which I purchased from Aquasana. I use NO soap whatsover in my vaginal area and do not use a towel to dry off as there may be residual soap or fabric softner in the fibers, I only use Scott unscented toilet paper, then a hair dryer on cool setting. I wash all my underwear and sweatpants and anything else that will come in contact with 1/3 soap they tell you to use and no fabric softner. Before bed I just wash with the shower head for a rinse, tp & hair dryer. I have gotten better over four months time, there is hope if you stay away from chemicals, that includes anything touching your skin, use gloves to clean, all chemicals go through your skin and into your bloodstream. Your skin will get better it just takes time, a bad allergic reaction is like a burn, it hurts the skin and the nerves.
CommentHI, I am wondering if anyone has seen a Dr. Libby Edwards (vulvar dermatologist) in Charlotte, NC or a Dr. Hope Haefner (gyn???) in Ann Arbor, MI (U of M Center for Vulvar Disease) ? I have never seen any mention of those two on here, though I have read various of the guest books from different years. Has any one seen them, or heard anything about them, or remember them being mentioned in one of the guest books? If so, what have you heard or what have your experiences been? Thanks!!! (PS my email address is as I listed it but w/o any spaces)
CommentPlease bear with the following, I know it's kind of specific. I have a question about CANDEX, if anyone has any experience with it. It is a natural alternative to something like Diflucan, and you take it over a longer period of time. Anyway, I started taking it about 3 months ago, it did seem to help with my itching, along with the yeast-free diet, so I cut the dose in half a month or so ago. I take it at night along with my other vitamins and medications for VV. Anyway, 3 times over the past 2 weeks, I woke up about 2 hours after taking it with a naseous, grinding feeling in my stomach - one time I even vomited a few times. I figured that since I have been taking my other vitamins for much longer with no side effects (iron, calcium, omegas), that it was the candex, so I stopped taking it. I had no problems for a few days until this morning, when I took one capsule of it because I felt itchy. Anyway, I got a minor grinding/sick feeling. I was wondering - has anyone else ever had this reaction??? I'm kind of freaked out (I'm going to stop taking it). Does this mean that my body has maxxed out on it? I was also wondering about die-off reactions, if this was possibly die-off from taking it for so long? Thanks for listening. Any feedback would be greatly appreciated.
CommentJS- just wondering what dose of effexor was therapeutic for you and how long it took to notice results?
CommentNicole: I just happened to be flipping through a magazine from a natural foods store before I checked this website. I remembered seeing an ad for the Candex that you are having trouble with. It says that it triggers no die off reaction. If that is actually true for your body, perhaps you are having an allergic type reaction to something in it-or maybe it's just too strong. I've never taken it myself, just brainstorming . . . It mentioned a satisfaction guarantee so maybe you can get some of your money back on it. It provided a website that might be helpful: www.pureessencelabs.com. It is frustrating when you take something you think should be beneficial, and it turns out you can't tolerate it. Even when things are listed as "natural", it doesn't mean that you won't have trouble with them. Some natural products are still too much for someone's sensitive system. Good luck!
CommentThanks Annie, I appreciate your feedback. You are probably right. I think my body must have just stopped tolerating it, because it seemed to work for some time. The past few times I took it, the symptoms felt like a stomach ulcer or something. I think I just got scared. I should look into getting some of my money back because it costs $50 a bottle.
CommentNicole -I'm taking Candex and am training to be a naturoppath. In their product brochure it does state that some people get an upset stomach with it but it is unusual that you got it after going down in dosage. In what form are you taking the omegas. My candida problem has also caused a food intolerance (which also causes vulvar itching- confusing I know because you can never tell whether its candida or food) and one time I realised I was itching because I was taking omega 3s in the form of fish (I'm not meant to eat tuna or salmon). I only mention that because candida commonly causes a vitamin B6 deficiency and vitamin b6 deficiency commonly causes the particular intolerance I have. Also- do you take vitamin c at the same time as the candex? Being an acidic substance it maybe too much irritation for your poor old stomach to handle. See what happens if you take the vit c in the middle of the day. I hope this helps (and doesn't confuse the issue). Email me (lizj279@yahoo.com.au) if you suspect any food intolerance but also I've sent emails to the people that make Candex before (support@pureessencelabs.com) and the naturpath there has been most helpful.
CommentHi Danielle--i saw Hope Haefner in U of M and had a horrible experience with her. I was only fifteen when I went to see her, and she basically told me I had probably been sexually abused since I was nervous of being examined. Hello! I was fifteen, dealing with vulvar pain since the age of 10, so yeah, maybe I was a little afraid of people touching me where it tends to hurt. I returned to her and still go to the U of M just in case they come up with anything new, but unless you want to try antidepressants, anticonvulsants or surgery, they really don't know as much up there as they'd like to think. But I really shouldn't tell you not to go, I have read other entries where people said she has helped them, but for me it was a horrible experience. Good luck and i hope you find a good doctor.
CommentOops sorry Nicole - I thought you had said that you were taking vit c but just realised you weren't. I wish you could refer to the posts whilst you are typing in this box.
CommentDanielle, I saw Dr. Haefner at the U of M....she was of little help. My doctor claimed she was "THE EXPERT" in vulvodynia. I learned much more on my own. In addition, she had a 3 month waiting list just to see her....I think that is unexceptable for a pelvic pain doctor. Three months is a long time to wait when you are in pain. Lastly, she told me I had no problems with my pelvic floor muslces and her internal exam was very poor! She did not even check the individual muscles for problems. Check out www.pelvicpain.org. Depending upon your condition, you may have better luck finding a physician!
CommentLyn I just wanted to let you know that I also have restless legs symptoms, which are very severe. I get this weird sensations in my legs that makes me wanna move my legs all the time. My vulvodynia was triggered by a yeas/bacterial infection, which went away, but the pain and burning remained. I also have pain in the clitoris, urethra, pelvis, tailbone ( I fell and hurt it when I was 10 ), and all the bones around the vaginal area. I also have pain with bowl movements, which cause for a severe clitoral pain. My everyday pain and most severe pain in the clitoris all the way down to the urethra. I also have pain with urination. I am on 100 mg elivil which helps a lot as far as every day pain goes and makes intercourse bearable. All this makes me think that my pain is nerve related and not infection related. I looked more into pudendal nerve entrapment and it makes a lot of sense since this nerve connects the tailbone, the anus, the urethra and the clitoris. Also, topical ointments don’t do anything for me, which again makes me think that this pain is not of dermatological origin so to speak, but neurological. So, once again, elivil is the only thing that seems to be helping, although it makes me very tired and sleepy. Thanks to all for “listening” and good luck
CommentHi everyone--has anyone ever heard of a dermatologist named Dr. Paula Zook? She practies in Seattle, adn I read something online about her, and I was just wondering if anyone knew anything. One woman in a guestbook from a few yeras ago says she was cured by a dermatologist in Seattle, and I'm wondering if it's the same one.
Commentthis might sound crazy, but i was reading something in this new study that says that htey now believe some women could be allergic to their own estrogen. Does anyone know anything about this? I am only thinking about this b/c this all started for me around the age of 10, right before i hit puberty, so probably my estrogen levels started to rise then. What do you guys think?
CommentI went ahead and wrote tyra about the conditions that we all suffer from. i know the women before never had any luck with the Oprah show but writing tyra is worth a try. These conditions need more exposure so that so many women don't suffer alone and scared.
CommentI went to see yet another doctor today and he said I have vulvar vestibulitis. He told me normally he would give me a prescription but because of my pregnancy he cannot. I was wondering if any of you can offer some helpful hints for me to try on my own. I would really appreciate this. Thanks Katie
CommentTo Katie: I get relief of burning and dryness from Emu Oil. Aveeno baths also help. If things get bad, sitting on an icepack helps a lot. I hope you have a beautiful, healthy baby.
CommentTo Katie - I have VVS and am getting physical therapy for it. Also, it helps me tremendously to take a warm/hot bath - this is the only thing that gives me relief. Are you allowed to use Lidocaine while you are pregnant? That can help numb the area.
CommentI was wondering, for those of you who have tried physical therapy-what are some of the things involved? I've been interested in the myofascial release but can't find anyone near me that does it. I'm using E-stim (kind of like a TENS unit, but delivered through a vaginal sensor) that is supposed to fatigue the tight pelvic floor muscles into a state of lower tension. I haven't really heard of this for vulvodynia, but I have heard of it being used for Interstitial Cystitis (which I have in addition to the vulvar pain) and pelvic floor dysfunction (which I also have). I forgot the units of measurement, but my muscle tension has gone from a 10.0 (a typcial person has a resting tension between 0.5 to 2.0 I believe). The E-stim has brought that tension down, but I have not yet experienced any pain relief. My NP feels that because I've had this for so long, it will take a while for the pain to start going down too. Has anyone else tried this? What was your experience? Thanks, Annie
CommentAnnie, I recently started physical therapy, and have been going once a week for 8 weeks. My doctor prescribed this for me based on a dilator that measured how strained my muscles are, and an internal exam. Anyway, PT is based on the idea that spasming and tense muscles, and constricted connective tissue are causing pain - within the vagina, as well as lower stomach and upper thigh muscles. This area is called the 'pelvic floor'. Basically the internal PT consists of massaging sore muscles in my pelvic floor, and stretching the connective tissue - this is the part that is myofascial release (I think - sometimes it's hard to tell exactly what's going on down there). She does this at the entrance to my vagina, where I have burning pain. Myofascial release is done by kind of kneading the connective tissue in 'trigger point' areas - which are basically just stressed out areas. My PT also does this technique on my stomach and thighs - believe me it hurts more than a massage! Anyway, I also use a dilator at home because I can only afford to go for a session once a week ($165 a session, and I'm not rich!). I started with an extra-small dilator (the size of a tampon), that is to be inserted for 10 minutes a day to help stretch the area. (I have since moved up to a size small, which is the approximate diameter of a quarter). So far, I have not had a reduction in symptoms, although I am getting a little more used to being touched down there. Granted, I have had vulvodynia for over 10 years, so I have been told by my doc "you're going to be in PT for a very long time". She believes that the majority of my pain is pelvic floor dysfunction, and that my pain will never go away without PT, so I'm trying to be hopeful. Please e-mail me if you want any more info about my PT experience - this is just it in a nutshell.
CommentNicole, Thank you so much for the helpful info. on PT. I had been wondering about the use of dilators too. My doctor said the same thing about my E-Stim taking a long time because I've had the pain for a while. (I wish I had known to try it when the pain started a few years ago . . . ) Thanks again, and good luck with your PT. It sounds like a good thing to try. :)
CommentThis is hopefully my last entry. I don't think I'll be doing any further updates unless I suddenly relapse. It is just so hard to read through these postings, because I have literally "felt your pain." For anyone interested, my prior entries were 9/26/05, 10/9/05, 2/8/06, 3/23/06 and 3/28/06. Very briefly: I had a sudden and intense onset of VVD last year (June 16, 2005). I'd never experienced any similar pain in the vaginal area, or any type of chronic pain, before. It was a feeling of extreme burning, rawness, chafing, stinging. I don't think I've mentioned it before, but this feeling eventually encompassed my entire vaginal and (to my horrified embarrassment) anal area. I self-treated for yeast for several weeks. After the pain became so intense that I couldn't sleep or think about anything else, I kept going back to my gyn. She ran all sorts of tests and ended up telling me there was absolutely no yeast and it was all in my head. (BTW, I also don't think I ever mentioned before -- I did a Google search on my symptoms -- burning pain raw vagina -- and found this website. I SPECIFICALLY ASKED my doctor, could it be this vulvodynia thing? She told me no, VVD is different, and gave me a bunch of reasons why.) To this day, I am so grateful I got a second opinion with a male gyn (I'd never had a male gyn before -- in my stupidity, I thought, "How can a man know what it's like to have female parts?") He immediately diagnosed me with VVD, and explained why my other doctor was "not up on the most current research" as he politely put it. If you have an older doctor, they may not have even been taught about VVD in med school or during their residency, so unless they've kept current, they're not going to be familiar with it. In any event, my new gyn ended up (after trying a few other things and with a lot of resistance/desperation on my part) putting me on Zoloft 50 mg. -- eventually, I was taking 75 mg in 25 mg tablets three times a day (7 a.m., noon, and 5 pm). He had had success in using Zoloft with other patients for it's pain-inhibiting effect. The SSRI inhibitors aren't supposed to work as well as the tri-cyclics, according to the Survivor's Guide to VVD, but it definitely worked for me. (When I read through my posts, on 2/8/06, it made me recall how, when I was even 40 minutes late in taking my pill, I could tell time by whether or not my vagina started burning.) The bottom line is this -- I have been "pain-free" now since around April 2006. I am having sex again, whenever I want (not dictated by pain symptoms). I can use tampons again (not to be crass, but there was actually a time when I thought, "Hmmm, which do I miss more? Sex? Or tampons? Not being able to wear tampons is pretty darn gross, for lack of a better word.) I will be honest and say that I can't completely claim my vagina is back to "normal". The only way I can think to describe it is this -- if I think about it, there's this extremely low-grade, fuzzy, tingly feeling. But, then again, if you focus in on pretty much ANY part of your body you'll notice some kind of mild mild pain or intensity. So, I just don't think about it, and I basically do feel back to "normal." Here are some thoughts on the condition, for any medical-type persons out there. It is definitely (at least in my case) related to your brain misinterpreting nerve signals. It also has something to do with the body's autoimmune system turning on itself. For example, sometimes it felt like the pain was triangular, extending out from my vaginal area -- how can you feel pain outside the ambit of your body? It made me think of how amputees get phantom pain in missing limbs. Also, as I've said, the pain was such intense burning and chafing and stinging and "paper cut"-like (I've read that term in some of the postings) -- yet, visually, there's nothing like that in the vaginal area. It's hard to believe, but although I FELT like the area was severely inflamed and burning, it wasn't! Regardless, the pain was so intense that I couldn't function -- so even if it was all "in my head", the pain itself was very real. As far as the autoimmune issue goes, I am fair skinned, blonde hair, blue eyes, English/Scottish descent, and (apparently, since I was recently tested) allergic to everything (except trees -- thank goodness there's SOMETHING I'm not allergic to!) In fact, I'm now getting allergy shots because I have a personal theory that I have to do whatever I can to keep my body from getting hyper-inflammatory. Here's a weird thing -- I've cut my Zoloft dosage from 25 mg 3x a day to 2x a day (50 mg.) All of a sudden, I'm having these twitches in my left eye and in the muscles around my stomach. They don't hurt at all, it's just that these muscles will occasionally "flutter". My dr. says this is another manifestation of brain to nerve miscommunication. I really did not get "over the hump" and start making huge improvements until I went back on the pill. My own fault -- I've been on it for so long, I think my body is acclimated to it. As soon as my hormones were being regulated again, everything started to calm down in a big way. Lastly, the impact of stress. The one or two days in May that I had a very mild flaring, my mom was visiting. Tell me that's not stress-related! So, for me, there's some connection between lowered serotonin (which is why the Zoloft helped), an inflammatory-type body, going off the pill, and stress. Aren't these all hormonal issues? Isn't seratonin a hormone, estrogen, progesterone, as well as the other stress-hormones? I wonder if inflammation is controlled by hormones as well. I'll leave that to Dr. Glazer. I just realized -- today is June 17. My symptoms started on June 16 last year. This is a pure coincidence -- I just happened to wake up at 6 a.m. this morning and decided to have a cup of coffee and check my email before my kids wake up, and thought about doing a last posting. I remember reading this website, and how I sometimes felt there was no hope. Anyway, it took a year. Which seems like a good place to end this entry. Keep the faith -- let's try to help find a cure for this condition.
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CommentI have been to pt before for my VVD and VVS. It was pretty easy and very benefical. We started off with some basic strecthes. They were basic hip flexor and pelvic strecthes. The she would be an internal massage where she used her finger to apply pressure to certain pressure points. The appointments would end with 10 mintues of unsing a tens unit machine. Toward the end of our work together she had ben slowly use a dialtor to strecth my very tight pelvic mucles and using the dialator to do the pressure point theraphy on myself. By the end of the experience my pelvic muscles were no longer tightneed. I no longer had pelvic floor dysfunction. I still had some vaginal burning but that ended a few months later with the use of Effexor and I was able to have pain free sex again. I still have some vvs but it if fairly mild. When i can afford it, I would be very interested in trying out acupuncture.
CommentThank you for the information JS. I need to look into getting a dilator . . . How long did you have to go to PT before you started getting some symptom relief? When you did the tens unit at the end of the session, was it done vaginally, or on an external spot? I am happy to hear that you were able to get some relief. That is wonderful!
CommentI forgot to ask . . . has anyone used a good physical therapist for vulvar pain anywhere in North Florida (or South Alabama/South Georgia)? Thanks.
CommentI have had LS for 8 yrs and want info or current treatment research as the current treatments are not working. More specifically I am interested in seeing how focused ultrasound technology (used currently in China) and maybe Nutropin could possibly affect it. I am willing to be a part of an study that will try to help those of us in the USA.
CommentHey everyone--does anyone know anything about parasites? i started to think that this all started after i got pinworms as a little girl. I got them two other times after that, but I don't have them anymore and do have vulvodynia. Does anyone know anything about this or if there could be a connection?
CommentAllison - It's funny you mention that. My boyfriend had pinworms around the same time this all started - I never saw any but I was treated for them all the same. I was sure that that was what was causing the problem, but my inflammation persists even though my boyfriend has been parasite free for months. It could be that they went away on their own for me but triggered the inflammatory response.
CommentI had pinworms as a young girl.... a few times I believe. My doctor at the University of Colorado Hospital said that would not contribute to my VV. It may contribute to the fact that I tense up -- due to the fact that the way we dealt with the worms would be to remove them with a q-tip from the vagina area. But anyway... as far as I know, the pin worms would not contribute to VV... now full Vulvodynia, I'm not sure.
Commenthi im kirsty im 18 iv been suffering from pain and dryness in my vagina for nearly 2 years the doctors keep prescribing me thrush cream but this isnt helping i wonder if any1 thinks tht i have vulvodynia as i am really scared i have been goin out with my boyfriend for neary 2 years aswell it started about 3 months after i started gion out with him although i have ben plagued with thrusth since i started gettin my periods at 12..i have lost my sex drive i thought there was somethign wrong with me but i think it is because of the pain it is really dry and we have to use ky jelly but its still painfull it stings as soon as he enters me ne it goes swollen and red my doctor gave me some metrodizonale tablets nd they seem to take the pain away for a little while do u think i will ever get my vagina to be wet on its own again and unpainful i feel suicidal because of this and i just want some help and answers :(xxxx
CommentTo Kristy: What you are experiencing at your young age is not normal and is probably causing further trauma to your vulva. Have you seen other doctors? Have you tried other lubricants? What tests have they done? What you call thrush and we call yeast infections certainly will interfere with normal lubrication and cause a lot of irritation. There are many treatments and preventive measures to help resolve your problem with yeast . Some may involve your boyfriend getting treatment as well. Please have him read this and if he does, from one man to another if you care about your girl do whatever it takes to help her. Don't be insulted or embarassed. Please do not stay with the yeast and the pain. Best of luck to you both.
CommentKirsty, Are you on the pill? If so, this might be the cause as alot of pills are high in Progesterone and not enough estrogen to lubricate the vagina. Just a thought and I'm sorry you are suffering at such a young age.
CommentHas anyone heard or tried Field Control therapy? Used by S. Yurkovsky is supposed to be a cutting edge method to deal with toxic issues in the body. He uses Homeopathy to detox the body of toxins etc. Google to check it out. Seems promising. Puja
CommentHello, I have had vulvodynia for almost 10 years now and have been keeping it somewhat controled with a combination of zoloft and elavil. Just recently a friend approached me about using a product called Herbalife to lose weight. I am nervous about trying this product due to the fact that it contains soy proteins. Many years ago I tried Slimfast and started getting flare ups. Does anyone else have any experience with this product? I started with a shake this morning and I already feel as if I am getting discomfort. This could be all in my head but I don't know. Thanks so much!
CommentHi Kirsty I have vestibulitis and like you, I have had bad problems with yeast. I am 21 but I have had this ever since I was about 13 I think. I was having problems with yeast ever since I was about 8 when I first got my period. The dryness you are experiencing may have something to do with the pill because I had that too when I first when on it (to control my periods, not to control ovulation because I can't have sex at all with my partner of 5 years :'( we are still both virgins :( ) and instead of trying drugs for your yeast, I would consider applying natural yoghurt *down there* as a really good alternative. I have found that the dryness is slightly alievated when I use yoghurt as well (you smell a bit funny afterwards but if you're as desperate as I am [and it sounds like it] I know you'll give it a go). And about the negative thoughts, just stay strong honey. Remind yourself that you aren't the worst case scenario - I can't have sex but at least I can wear jeans while other women can't even wear underwear or sit down for more than a few minutes. I had surgery and it failed but at least I'm not in a third world country where I would never have had even the opportunity to see if surgery would work. I'm one of the lucky ones, sadly. You may not have vulvodynia, it may just be a yeast thing, so just hang in there until you actually know what you are up against. Don't give in to the pain, physical or emotional, that this is causing you. Everyone here on this website is here to provide you with support if you need it :) xoxox
CommentDoes anyone know of a good Physical Therapist in San Diego who specializes in vestibulities/vulvodynia? Any help is much appreciated. Thank you.
Commenthi im 21 and from new zealand. i have suffered from vulvodynia since i was about 11 so i have nearly had it for halk of my life. i am unable to work anymore because of the pain and i seriously have no hope of ever recovering. i am so close to killing myself that it is not even funny. This condition completely ruins every aspect of my life and i cant take it anymore! i just want to be normal!! i read a post in this guest book made by a new zealand woman. i live in wellington and i was wondering where you live? i have never met anyone else with anything like this and it would be nice to finally meet someone else with this condition, thanks, gemma
CommentHi Pat: Do you live in San Diego? I live near Poway and haven't found a competent, caring Gyn. yet. I have Lichen Sclerosis as well as Vestibulitis. You can email me if you'd like. I've heard of a couple of physical therapists out here. Do you have a good Gyn? Hope to hear from you. Sue
CommentHi Gemma, wow you sound just like me! I'm 21 and have had this condition since I was 10. I have tried literally everything too and am just at my wits end b/c i feel like I have absolutely no future in the career area (since I can't focuson work) or obviously the relationship area. How did your pain start? Mine started with burning with urinatin and then the whole vulvar area just feels raw, stinging and irritated. Right now I am seeing a chiropractor an da NAET doctor. Let me know what you've done, we sound pretty similar so maybe I could give you some tips or vice versa. Don't give up hope, please. Also, do you have fair skin? I am getting a gene test done this week, there was a study done by Dr. Ledger that found that many women with vulvodynia have a gene that isn't able to turn off inflammation, adn for some women it can be corrected. You can send away for the test. If you're interested let me know (it's more common in fair skinned women). keep the hope up. allision
CommentI am 28 years old and for about 2months now I have been experiencing pain during intercourse and bleeding(not alot) right after. I went to my Gyno and he asked if I am lubricated enough during intercourse and I told him that sometimes I dont get wet enough so he suggested I try KY jelly since sex without lubrication can make me bleed. Anyways, I tried that but still no luck. I went back to him and he said I should go see a vulvadynia specialist and my appointment is in a few weeks. I researched on the net what symptoms of this disease and I am not sure if this is indeed what I have. Most women claim discharge, so much pain in the vulva they cant bare to have sex and sometimes can't bare to even sit down. This is not my case. Sometimes sex doesnt hurt, but that has been rare these past couple of months. I developed a couple of weeks ago a urinary track infection and I dont know if it has anything to do with vulvadynia. I have been taking ortho try cyclin for 3 years now and I dont know if it has caused this because of the estrogen it contains. I would love it if anyone on here, who can relate with me to please email me and let me know their story and their treatment. Remember, sex is painful but once I lubricate myself it is berable, little blood right after intercouse and aside from those 2 symptoms nothing else. Thanks for those who read my story and I am so happy to have found this web site.
CommentHello Frank. I just Emailed Tyra show again to request her discussing a topic on vulvodynia. I think we ALL should send her an Email. We have nothing to loose!
CommentI also emailed Tyra. It doesn't hurt to try.
CommentHi Sophie! I see that you mentioned you're on Orthotricycline. I am as well, and to be honest, I feel like my symptoms got worse once I started this. I've thought about going off of it, but there's never any conclusive evidence that this is the cause. I've even asked my doc. about it and she thinks it's not connected. I have worse days than others, so I can't tell. But I feel like my symptoms change throughout the day. What can change in your body all day long? Hormones maybe? Are there any others out there that are on Orthotricycline or something similar. I'd be interested in knowing. Thanks!
CommentHello: Just to let you know this can be beaten. In January of this year I had a vaginal infection, followed by a yeast infection and bladder infection. I am 45 years old and never had any of these infections in my life. Within two weeks I had all the symptoms of vulvodynia as well as bladder problems and irritable bowel syndrome. I was a mess. I was certain I had cancer or the very least an std. My doctor couldn't find anything - he kept thinking I had a yeast infection because there was so much discharge. The pain stayed in the vaginal area but also rose to my stomach. By April I was hardly standing. Severe depression set in like I have never had in my life. I was having very dark thoughts and just wanted a way out of the pain. I went to a gynecologist who put me on 150 Effexor to deal with the depression immediately. To my amazement, within 24 hours I literally felt my body relax and the pain subsided. I only stayed on the Effexor for 15 days as I then felt strong enough to work it through. As well, I understood that, in my case, the nervous system was to blame. I have since been seeing a herbalist who has put me on a healthy mix of vitamins, etc. and I feel like my old self. Basically, my herbalist and doctor believe I was suffering burnout and my autoimmune system was out of whack. Looking back now, I went through a very stressful time when the infections started and my worry of the pain exacerbated things. I have to be careful to hold back on work, practice relaxation, and be careful to listen to my body. If I push myself with a long day, I can feel a small vaginal ache coming on. I am wear tampons and enjoy sex when I want. I am very certain that, just like headaches, there are many reasons for vaginal pains. I strongly suggest taking the antidepressants, seeing a herbalist and assessing your stress levels can help. My doctor had commented that for some people Effexor is a miracle drug that corrects the nervous system immediately. I wish you all the best and hope this information might be useful for some of you.
CommentHI THIS IS TO JESS & FRANK Hi thanks alot for your comments i didn't actually think someone would write specifiaclly to me and it has made me feel alot better :)..i was on the pill but i came off it i am on nothing jus now and i am not having sex anyway so i'm ok (but if i am going to i will use protection!)..i have been tested for all the sti's the last few times i have had tests at the gum clinic they have come up negative (confused) as i know the smell down there is not normal, they gave me metrodizanole tabs and they have took away the smell! and they seem to help the pain, but it is still dry..do u think the reason i have lost my sex drive is because of this? because i am scared i don't feel lyk a normal girl cuz i used to have "urges" but i don't get these anymore. My boyfriend has been quite supportive although it is stressing for him aswell as he is only 18 too and it is alot i think as i can be really snippy with him and he sometimes feels although it is his fault :(..i wash with diprobase cream in teh shower and my mum uses non-bioligical washing powder. When i ask the doctors about it they say it is not normal but they don't know what it is :( do u think i will find a cure ??
CommentI am feeling like Dr. Gibbons at St. Francis in Hartford is my last resort....anyone ever seen him? Thanks
CommentI FOUND RELIEF!!!!!!!!!!!!!! I have suffereed with different renditions of this disease since I was 15. I'm 28 now. I have an accupuncturist in S.F. who saved my life. I was on the brink of utter destruction when I found Dennis McGrath. I was told by every doctor I found that they were doing everything they could and I was just going to have to wait it out. This disease is one of the worst things a woman can face and I am sooooooo happy to share the fact that I have found relef. I had to see Dennis once a week for about 6-8 weeks and now I see him about once a month. Call him and best of luck! I thought I was hopeless and now I've found a remedy works! Tell him you read about him on the web site. I've been meaning to post for months,but I really wanted to make sure I had something ligit to offer to all suffering. Dennis McGrath (415)567-5601 Best of luck!
CommentHas anyone had any luck with probiotics? If so I was wondering which ones. I am also wondering if anyone knows of a good doc or acupuncturist in Houston? The last OBGYN I saw was not very helpful. Thank you for any info. Katie
CommentI have just been diagnosed with candida in my intestine. I found the following probiotic recommended on the anti-candida website www.wholeapproach.com "Probioplus DDS" by UAS Laboratories. I have just started taking them. They are additive free. My test results showed that I had few to no good bacteria in my gut and these are important for fighting candida, which can contribute to vulvodynia. So, whether they help with my vulvodynia or not, it seems a good idea to take them. After 6 years, I'm still on the journey to finding the cause and relief from my vulvodynia. I hope this information is useful. Helen
CommentMy story started 8 months ago and I'm desperately looking for some answers. I woke one morning after having oral sex the night before, feeling a little sore and irritated. Throughout the day my symptoms began to feel like a yeast infection, so that night I treated myself with an over the counter treatment. It was extremely painful, and I had to get up in the middle of the night and take a bath - I had to get the cream off. The next day I was very swollen and in a great deal of pain. My doctor looked at me but didn't take any swabs. She suggested I may have herpes, although there weren't any leisions. She gave me a 10 day treatment and off I went. I was so sure it was a yeast infection that I gave myself another treatment the next day. Four days later I was still red but feeling pretty good. The next day the itching started again. I went back to the doctor - this time she took swabs for yeast, bacteria and stds. Everything came back negative. Over the course of the next two months I think I treated myself for yeast 5 times. Eight months later I've been to four doctors, been tested for STDs 3 times - the only thing, by the way, that they have tested me for, and have had a biopsy. I mostly feel irritated and raw at the entrance to my vagina, expecially when there is discharge. About 4 months ago I started to experience pain in my genital area. Sometimes it feels like pulling, which can extend down my thighs. Sometimes it feels like a deep ache in my buttocks. Sometimes it feels like my skins is really sensitive and even my pubic hair prickles me. Sometimes it feels like I have razor blades in the crease of my legs, which makes it really painful to walk or wear underwear. I occassionally feel stabbing pains in my vulva. The last doctor I saw said he thought I probably have vulvodynia. He handed me a fact sheet, told me to apply lard 4 times a day and to come back in 2 months. If I still had pain then he said he'd prescribe something. I still don't know 100% what I have. Do these symptoms sound like yours? I have to admit, since my doctor mentioned herpes I have been obsessed with it. I don't think I'll truly believe I don't have it until someone can tell me definately what I do have. Maureen
CommentHi, I also have a listing of my vulvodynia and how it happened listed in June 06 guestbook # 26, but was wondering if anyone has gotten this from an allergic reaction? I read of so many reasons but do not see anyone with it happening because of that. I do know that vulvodynia can be caused by an allergic reaction because I've asked Dr. Glazer and I've read it several times on the internet, but it would be nice to talk to someone that got it the same way I did, how fast did they heal, where they had it, what they used to cause it? So if there is anyone out there, PLEASE, email me!
CommentI found releif having surgery from Dr Goldstein from washington DC. I was diagnosed with acute vulvar vestibulities. Surgery was the only option. My pelvic muscles however were very strong but my main area of concern was the area of entry below the vaginal opening. My pain was only when trying to have intercourse. I had to deal with it for 15yrs from my teenage yrs to thirties before I went in for the surgery. It is expensive and all my savings went into it.But I had to take a grip of my life and not let this ruin me. I am able to have intercourse and thats about it. They remove the bartholin glands so you will have to deal with vaginal dryness and I don't get aroused as I used to. I can't get an orgasm during sex but only by manual stimulation of the clitoris. I have no complains since I can still get to have an orgasm. There are certain sacrifices that you will have to deal with after the surgery but I think it is definately for the better . There is hope. good luck
CommentMaureen, it sounds like you have "pelvic floor muscle disorder" google that in to get more info. One thing to know is that your pelvic floor muscles could be damaged my yeast/toxins/food chemicals from the foods you eat. Do your research, hope this helps you.
CommentI was prescribed zoloft for the vulvodynia. After 8 weeks, I noticed I began having nerve pain in my brain. The pain that we feel in our vulvas, I feel the same exact pain in my brain. So I immediately stopped taking the zoloft. The Dr then put me on Klonolopin for the nerve pain, that has caused me to be SEVERELY DEPRESSED! It has changed my moods, I went to a naturepathic Dr to have my neurotransmitter levels tested, the klonolopin as depleted the 4 main nerotransmitters needed for mood. My brain feels litterally FRIED AND DRIED! I can't focus, my mind wonders anytime I do anything. I can't watch TV, it's hard for me to pay my bills by dead line, I can't focus, my brain is nearly gone. My mind has faded, it's like I have litterally lost my mind. So now not only do I have vulvodynia, I now suffer from Anxiety/Depression and feel like killing myself. I have suffered vulvodynia for the past 8 years, and now brain/nerve damage from medication for the past 1 1/2 year. I have 2 kids (an infant and a preteen). I urge you all to please check out the side effects before taking any antidepressants/anticonvulsant drugs. Not only do I have a screwed up vulva/sex life, now my brain is messed up too! I am trying to find some good vitamins to help lift my mood, nourish my brain etc... I have been use to this vulva pain for years, but now with this brain issue, It makes me feel Skitzophrenic, I think things that I don't want to think. I am talking you guys about this because I would hate for this to happen to you too. If anyone know of any good vitamins for the brain, please let me know. All responses will be read and most apppreciated.
Commentwait, i'm confused. i didn't htink vestibulectomy took away the ability to have an orgasm. i haven't had the surgery, but am considering it and this definitely changes things! if anyone knows anythying or has had a vestibulectomy could you please tell me? thanks.
CommentTo "Please Listen": Sounds like you need to see a different doctor and fast! Don't think any vitamin will resolve the "pain in your brain", zoloft is strong stuff but should be out of your system and the clonozapam is like valium it has a calming effect on the body and mind unless you are taking too much. You said you have an infant, could your depression be somehow tied into that? Don't forget all the stress you've been under , dealing with vulvodynia and having a baby...Please stop taking medicines including natural cures and see a doctor who specializes in depression related illness. Those bad thoughts are a sign of something serious please don't wait. Best of luck.
CommentFrank, I have not taken too much of the medication by any chance. Actually, I take 1/2 the prescribed dose ( .25 mg) per day. I only took it for 5 days and now.....this crap!!! I actually can feel that my brain is very very DRY. I know for a fact that the naturaly chemicals in my brain has been depleted, I can tell my mood changes every 5 minutes, the dry feeling inside of it, Its very hard to explain. But I have been doing a LOT of research, I have found that drugs can cause those effects on the brain. I am very scared! I'm going to take some amino acids to help my body process neurotransmitters to increase the levels. That's all I can do for now. I need to know of any other vitamins that will be of good help? Please let me know if anyone has any suggestions.
Commenti think my vaginal discharge might be too alkaline. Could this be contributing ot hte pain? does anyone know anything about this or if there is a way to make it more acidic?
Commentis there an emily royce still reading these guestbooks? i found some of her entries a few back and was wondering how i could get in contact with her.
CommentHi Maureen, I don't mean to overwhelm you and I realize that someone told you that your symptoms sounded like pelvic floor disorder, but it also sounds like what I have, which is candida. The fact that it started with a yeast infection, got better with yeast infection treatment, definitely sounds like yeast. But also the stabbing pain and other refereed types of pain sounds like yeast too. Maybe both are going on, but it's worth seeing a natural doctor or an environmental specialist to at least rule out candida since at some point it certainly sounds like that was the problem. There are tests to determine this - and not swab tests - but injection tests, saliva tests and I even had an acupuncture test reading done. There are a lot of things that can cause vulvodynia, it took me three years to discover my cause was candida - I was convinced mine was caused by pelvic floor disorder and I was wrong. All I'm saying is to stick to the basics, if your problem was originally yeast, make sure it's still not yeast. If you want any more advice send me an e-mail. Good Luck!
CommentTo those who are on Effexor: I recently (3 days ago) started taking effexor, after many other attempts to relieve my vv symptoms. I am on a low does 37.5 mg 1X daily. Although the doctor said I can increase if necessary. I would like to know the following: 1. how long were you on effexor before you experienced relief from daily pain? stinging, burning etc? 2. How long until you were able to have intercourse? 3. Do you still experience any pain? (with or without intercourse?) 4. What dose are you taking? 5. What side effects did you deal with? 6. Anything else you think would be helpful to share. p.s. I am in my 3rd year of suffering from vv/vulvodynia Thanks!
Commenthi i need a doctor who treats Vulvodynia in the Dallas area please post and let me know thanks! Patricia
CommentHello, This is a great website...I'd like to tell me story to see if any of it resonates with anyone out there... i am suffering from daily vulval pain after a cystectomy 3 years ago. The surgeon left the clitoral hood in tatters. 2 years later, corrective surgery found a stitch abscess and also restored anatomy as much as possible, but it brought back the pain full force. Shortly after that, a dermo thought it could be Lichen sclerosis and gave me a potent steroid which i severely reacted to. I havent been able to wear underwear or sit down since. No infections and no skin diseases acccording to a biospy. Just VIN one from HPV virus lurking around in my skin after genital warts at 19. I will be starting treatment of Elecon soon..but I am terrified of possible effects.Since that potent steroid i am reacting to everything and the constant discharge feels as if it is whitening and eroding my skin...I am in agony ! General symtoms are rawness, a toothache type pain, a feeling of sitting on a burning rope, stinging and sometimes burning but never itching unless i am reacting to something...I have constant flareups an inflammation..my gyno says its all a kind of allergic type dermatitis brought on by trauma..makes sense to me.... I have a feeling its pudendal damage but I am not attracted to the idea of nerve blocks or further surgery... The only thing I can tolerate is oilatum, black tea solution and aloe vera...any comments/ideas welcome! Hope u all having a vulvically vivacious evening... Diamando
Commentdoes anybody know of any product or medication which lowers the acidity of/alkalizes the urine? if anyone has any informatin i'd really appreciate it. Thank you
Commenthi everyone, does enyone have had any good resolts with the natural cellular defense? i am thinking about to try.please let me know.thanks
CommentHi everyone! It’s been quite a while since I have posted here. This will be long, but if you are interested in a course of action that could significantly improve your health, read on… In Nov. 2004 I was diagnosed as having vulvar vestibulitis and told by my doctor that it was incurable and to find myself a support group. I’m not sure if his diagnosis was totally correct. I have had chronic inflammation in that area (as well as frequent tearing with intercourse), but it could be just yeast, or vulvodynia as well. In fact my symptoms have varied over time, but I don’t think it really matters what you call it. The treatment that I have found actually addresses your overall health and in my case has cured all kinds of chronic problems such as frequent urination, urethral stabbing pains, headaches, acne, skin itchiness, severe depression, athlete’s foot, sore throats, etc. In other words, when I started to take care of my body, my health improved in every way, including my vulvar problems. I’m still not 100% cured, but I felt that it was time that I shared what I have learned. It may take me another year to totally clear my system. Since this will be long, I will break this into several posts…
CommentHere’s my theory as to what caused my particular illness. I have always had a less than ideal diet, even by the fairly low standards of our culture. I used to eat more sweets (and french fries) than anything else, and I had been on birth control pills (10 yrs.) and on antibiotics many times over the years. I believe the poor diet and medications caused an imbalance in the microflora in my intestines (as well as a state of malnutrition). You will hear some refer to this as candidaisis. There’s more to it than that though. Candidaisis can cause all kinds of problems and any internet site on the subject will list many symptoms, including vaginal infections. Candida produces toxins that cause all types of problems. The foods we eat may also introduce toxins that need to be removed from our system. I feel that I was so toxic that my liver couldn’t effectively do its job. This resulted in various skin problems, including vulvar inflammation. The overgrowth of candida affected my immune system and also I had the candida overgrowing vaginally. Even when the vaginal candida seemed to be gone there was irritation. I believe this is due to continued cleansing action of my body. The vaginal secretions are irritating because they contain irritants that my body is purging. My menstrual blood is at times irritating because it also contains compounds that my body is cleansing. Various skin rashes can appear due to cleansing. This can go on for a long time but lessens over time in my experience. I’m now to the point where I have mostly good days and only a very slight amount of irritation (occasionally) which I can connect to my hormonal cycle. Continued…
CommentAfter trying a couple of programs to treat candida (with some level of success), I eventually discovered the work of Weston A. Price. His research is the basis of several diets that you may have heard of (Maker’s Diet, Body Ecology Diet, Dr. Mercola’s diet, etc.) It is also the foundation of the diet that I am following. I must emphasize that there is no one right way to eat, but I would recommend this one program for treating vaginal inflammation. It is a candida program, and it is free. It is provided by Bee Wilder through a yahoo group: http://health.groups.yahoo.com/group/candidasupport/ You need to join the group in order to participate and read the files, etc. I must emphasize that even if you don’t think you have candida, this diet could still help. It will help any number of chronic health problems because it rebuilds your immune system and gives you the nourishment that your body needs. I also recommend you learn for yourself about the type of nutrition that is required for good health. The best source that I know of is the Weston A. Price Foundation. Here is the link to their brochure which gives a good overview: http://www.westonaprice.org/brochures/wapfbrochure.html There are two books that I also highly recommend which are written by Sally Fallon (president of the Weston Price Foundation): Nourishing Traditions, and Eat Fat, Lose Fat. Nourishing Traditions is a cookbook but is also full of nutritional information. The second book is all about the value of coconut in the diet. In the case of Bee Wilder’s candida program, coconut oil is the only coconut product that is used. The Weston Price Foundation web site has many articles on nutrition and I would recommend it as a way to get an education on how to eat. I realize that most of us hope for a quick easy fix for our problem, but unfortunately that doesn’t exist. Almost everyone in our culture suffers in some way do to poor nutrition. Eating the traditional type of diet that Weston Price proposes addresses these problems at their source rather than treating symptoms with ineffective drugs. Anyway, I hope this can help some of you. Good luck to all! Jan
CommentGreat Site. Jenny <a href="http://www.hoodia-dietpill.co.za">Hoodia Diet Pills</a>
CommentDesperate, confused and weary are only a few words to describe living with the constant pain of Vuvladynia. Three years ago I was diagnosed with a rare type of Cancer in my back. I was extremely fortunate in that I did not require any treatment, such as chemo, as the tumour was centralised. I had 2 major operations and a skin graft and remained as positive as possible and looking forward to the future, appreciating every moment. However, shortly after this I started getting a burning sensation all over my Vulva. I presumed I had Thrush so I took some antibiotics to clear it up. The burning got more and more severe and no amount of antibiotics helped. My life was mayhem as I was just getting back into a routine, settling into work again and planning my wedding. I found that the more stressed I became the worse I felt. Sex was impossible and soon became something “other people did” and I felt not only physically debilitated but emotionally also. My Vulva was on fire and it was 24/7. I would feel heat radiating off it constantly. Sitting for any length of time was impossible and I found myself nipping to the toilet at work every half an hour just to sit on the toilet and alleviate the pressure of wearing any clothing. I have always worn cotton underwear and even they were unbearable. My sleep pattern was broken as the pain would wake me up and one night I woke up and wet some cotton wool to hold against me to try and ease the pain. I had a look at the area and realised that my skin had split and was broken to the point were I was bleeding. Now not only was I drained from energy and burning up – I was scared. I have only been with two partners and I was panicking in case I had an STD. The next day I made an appointment with my private Gynaecologist. I had been private since I was 14 as I had never had any luck with GPs. At the end of the day they are General Practitioners and through my experiences I needed to see an expert and would not have it any other way. My Doctor did some tests and was able to reassure me – I had not contracted any STDs. Then what was the problem! She had never experienced anything like this but was very sympathetic and so easy to talk to. She arranged for me to have a biopsy taken to try and diagnose and in the mean time gave me lidocane and some steroid creams to numb the area. It didn’t work. Instead it made me worse I put it on and the pain was unbearable but I tried to stick it out thinking it would settle down but it didn’t and I had to wash it off gently. For the next few days after I was in terrible pain. I had the biopsy done and she was able to tell me I had Vulvadynia. I did some research on the Internet and found little information about it but what I did see was scary. My Doctor couldn’t tell me much and the Internet was basically the same, no idea how I came to have it and no idea when, if ever, it would go away. She prescribed me 20mg Amitryptaline for the pain and it took a while before I noticed any difference but at least now I was able to sleep at night. I went onto the Internet and found some chat rooms for other sufferers and found that a lot of other women had had some kind of back trauma. I do believe that this is the key common denominator although this has never been proven. I changed all my soaps to preservative free emollients and used non-biological washing powder which helped a bit. I didn’t think it was helping – when you are in so much pain it’s hard to notice a slight improvement but I decided to shave my legs in the bath one night using shaving foam and the pain as soon as the soapy water touched my vulva was horrific – it must have helped! I have also found using organic sanitary towels (these are available on the Internet from www.natural-woman.com) a life saver during my period. I now experience very little pain and at times none during my period. Sex was non existent and had been for at least a year due to the pain. I felt so lonely and a useless lump although my Husband was very understanding. We have problems though because he “trained” himself not to be intimate in that way with me and it is hard to get out of that habit – it’s like we have forgotten what to do! He’s scared he is going to hurt me and I try my best to reassure him that I would let him know if I am too sore. As I am dry all the time my Doctor suggested using a lubricant called Sylk. It is made of natural ingredients and is excellent. Even with the changes in my life style and the pain killers, I was still in terrible pain. At times I just lay on the cold bathroom floor and cried, at one point I was so low I knew I could do something fatal. I am a fighter though and couldn’t let it beat me – I didn’t let the Cancer! I tried a low-oxalate diet as my research indicated that a high level of oxalate crystals in your system can irritate the Vulva when passing water. From doing this I have been able to identify that when I eat too much chocolate and drink to much alcohol I have a flare up of pain. Distilled alcohol – I am fine with wine. The only avenue left to take was Traditional Chinese Medicine (TCM). I was a bit sceptical but anything is worth it although it took all our savings. I went for 19 sessions of acupuncture, cupping and acupressure. At first I wasn’t sure it was working but then I started to notice a slight difference. The TCM Doctor prescribed me a combination of drinking herbs and washing herbs which I had to take daily. Yuk – that’s all I can say about them – be prepared!! Half way through my course of treatments they took me off the herbs and put me on tablets – Jia Wei Xiao Yao Wan. I took eight up to three times a day. They treat a multitude of complaints but most notably are used to dispel heat from the body. I still wasn’t sure that the treatments were working but a few weeks after my last treatment I felt almost normal! It has now been 3 months since my last treatment and I have also stopped taking the Amitryptaline after consulting with my Doctor. I can now get through most days like any other “normal” person and only have a flare up when I am stressed. Stress is definitely a major factor to the pain. My husband and I are even able to have intercourse now although emotionally it is still at times difficult to “forget” and we do worry that I will be sore – but I am sure that is something we will learn to deal with in time. So remember that you are not alone out there – although sometimes that doesn’t mean much because it is you that is feeling the pain. However, you can be rest assured that you HAVE got a medical condition that the Doctor’s mightn’t know a lot about but it DOES exist and it is not all in your head and don’t let anyone tell you any different. It is really hard to keep your head on your shoulders but don’t let it beat you. Here are my top tips for easing all the pain associated with Vulvadynia: See a Gynaecologist – not a GP and take as much research as you can with you. You might have something completely different so it is important to get a diagnosis. Talk about it – tell you family or someone you are close to how you are feeling and let them understand. You can feel isolated and left out so be honest – don’t be embarrassed. Use Non-Biological washing powder on clothes. Use preservative free emollients such as Simple soap and don’t use any, just water on your Vulva. Don’t have boiling baths – tepid water. Use organic sanitary towels/tampons. Avoid distilled alcohol – drink wine, cider or beer instead. Traditional Chinese Medicine – it does work. Call in for a consultation and see what you think – even just try the tablets if you don’t think you need the whole works. Try Sylk lubricant. Try to remain positive and stress free – remember that you can get through it. Don’t do any cycling that would irate the area!
CommentI was reading the previous posts and someone had mentioned that his disease is for light/fair skinned women. Well I just want to say that I am a black female, brown skinned. I am far from light so this disease does not discriminate. To ASHLEIGH, you said that you had a bad case of thrush and that you took "antibiotics" to treat it but then you felt you were getting worse; Antibiotics IS NOT a fungal infection treatment. Antibiotics is a treatment for bacteria infections. If you take antibiotics, that kills some of your good bacteria( in your intestinal tract and vaginal area) causing all kinds of yeast to grow. Some of us got here in the first place by taking antibiotics. So be careful next time a Dr prescribes you antibiotics.
CommentI am trying to use your site to identify professionals in my area who specialize in vulvodynia. Unfortunately, as I am not a "member" of the group "vulvodynia" I am unable to access the information. I have even tried filling out a professional "registration" without success. Please advise on how to access this information. If it can't be done without being a group member, your site needs to state this clearly. Thank you.
CommentHi all, Lynn - Just wanted to offer some feedback - I didn't write the post about light-skinned women, but I think I know what the original wirter was referring to. There is a gene that some doctors test for that is common among many women who have vulvodynia - it is the same gene common among people who have rheumatoid arthritis, Lupus and other disorders. I think that the gene predominantly occurs in very fair skinned, allergy prone women, or that there is some sort of connection. I think that's what she was referring to, nothing more. I would assume that we all should know, at least by reading all the posts, that vulvodynia can strike anyone at anytime, and that it does not discriminate by race or age. Just wanted to thank everyone who's been supportive to me, I've had a few bad flare-ups I posted about here over the past year or so, and everyone has been so helpful. I'm doing a bit better (maybe 15% better), I think due to a combination of PT, and some injections I got directly into my glands (3 injections total). Believe it or not, I don't remember what the doc said they were because I was so freaked out about getting injected 'down there'. I think maybe it's capsaisin or some type of pain killer or anti-inflammatory - she said it's not interferon. Anyway, I have to go back every two weeks for about 3 months. They seem to have helped pretty significantly with my pain throughout the day, but nothing has changed in regards to when the area is touched. Also, my PT said that she very rarely sees anyone who improves before 6 months of PT treatment (and that's with going twice a week!) So, I'm crossing my fingers. All these appointments are really taking a toll, not only on my wallet, but my car mileage, and my benefit time at work - jeez! best of luck to you all!
CommentTo Monica: I was able to register and become a member of the yahoo group so I could access the registry. There are only twenty listings, no addresses only names, e-mails and telephone numbers including Dr. Glazer. Without giving your specific address , try asking the other readers if they know of a expert in your country, state or city. We live in CT and know of only one in our state. I have seen other readers mention experts in NY and several other states so it is worth a try. My wife's gyn in CT knew of the expert in our state and suggested she make the trip to see her so try asking your gyn. Best of luck.
CommentMy mistake, the address of the provider is listed I just didn't scroll across enough. Give us your state.
CommentI have symptoms of vulvodynia, but no diagnosis. Somewhere on this site the Pudendal nerve was mentioned. That this nerve is somehow pinch or damaged makes sense to me. Also if antibiotics have anti-inflamatory properties and seem to help this might indicate inflammation around nerve. I am going to take naproxin 375mg 3 times a day and see if this works
CommentI've been on the candida diet for awhile now, and have pretty much introduced most foods back in - except refined and processed foods. And I'm still getting better. I totally agree with Jan that a healthy diet, no matter what you have, is so so so important. I also think that we should be very skeptical when a doctor prescribes antibiotics or hydrocortisone. Both have made me a lot worse off. They might help some, but with a lot of girls, that doesn't seem to be the case. Finally, I've had some chinese medicine recently, and, because of what we have, raw, burning, itching, etc. it's a result that our bodies are too hot and that we need to cool them down - as Ashleigh mentioned. Getting some herbs to cool my body has helped - I didn't even need a doctor for this, the guy at the herbal store pointed me in the right direction. And like I said, I'm still getting better - in fact I don't even take anti-fugals anymore. Good luck everyone
CommentHmmm, I think I'll add just a bit more about chinese medicine and cooling the body. It's also good to avoid "hot" foods like lamb and have beef less frequently, but especially avoid garlic, onions, ginger and shallots. I was talking garlic as an anti-fungal and my chinese doctor told to me stop. Also, watermelon is very good for cooling the body (as long as you don't eat it with beef apparently). I was also told not to eat bananas, mangos and shellfish - but I don't know if that has to do with vulvodynia or my other health problems. I know for sure that shellfish has to do with my eczema (where my skin splits and bleeds) but not sure if it also has to do with vulvodynia.
CommentHi All. I was wondering if ANY of you had any kind of luck with getting on the vulvodynia yahoo chat? I have never been able to chat. I have signed up, became a member, but there's never anyone chatting or the site is down or something. So I was just wondering if any of you would be interested in exchanging phone numbers so we can exchange information quicker and so fourth. Let me know.
CommentWhat are the names of the products you got from the herbal store that cool the body?
Commenti have yeast infections that wont go away, is there anything i can do for this? please help
CommentMy chinese doctor is Canadian born and received her PhD in Chinese medicine in Vancouver. She also studied and worked in China for awhile. But, the best part is, she specializes in gynecology. She suggested the usual Candida diet and a cooling herb that she had to order for me from BC. She said it's the best stuff for me - now I don't know if that's all candida symptoms or just the vulvodynia. Anyway, it arrived about a week ago and I swear my itching has almost completely gone away AND I even cheated on my diet over the weekend. I had tried some "cooling" herbs before, but this stuff really worked. It's called Quell Fire - I looked it up on the net very quickly, now there seems to be a recall on Quell Fire by Jade Pharmacy, but my brand is Kan. Also, it looks like it's pretty easy to order it if you like. My doctor told me to take 12 drops, two times a day orally, and a bath everyday with 20 drops. I noticed a huge difference within a few days, no die-off, no pain at all. If anything changes with this herbal med, I'll be sure to post and let you know. But so far so good - I actually lay in my bed three nights ago and thought to myself, this is the first night in almost three years where I actually can't feel any pain. I was feeling really good, but not 100% totally normal, it was such a weird feeling. Now remember, I am also doing a much less strictive candida diet, I am also avoiding "hot" foods, I'm taking Chlorella, Grapefruit seed extract, and probotics. I don't know if you need to do the diet, etc. to really notice a difference, but I know for sure that this herb has definitely been the most effective thing I have tried - outside of acupuncture. Good luck ladies - if you have anymore questions - please let me know.
CommentTo Jenn~ hi jenn, i was just wondering what exactly your symptoms were? i know your figured out you had a candida problem, and I know you had itching . Did you have any burning, stinging, burnign with urination, rawness, etc? This started for me when I was ten years old, and I have no other symptoms. I never have itching (i have had two yeast infections in the past two years, but nothing major in the yeast infection area), and I just don't know if this could be my problem. I took ThreeLac, like six packs a day for three months and felt no different. If you have any advice I would really, really appreciate it. thanks. allison
CommentThank you for your response! I will have to look up the Quell Fire and see what it says about it. Have you noticed any die-off from the GSE? I know it can definately cause it. I don't know how long you have been taking it though. Thanks again!
CommentLadies, I found out that the injections I am getting are called Traumeel, which is some sort of homeopathic anti-inflammatory. Has anyone ever tried this? The next thing for me if this doesn't work is Capsaicin cream. Any feedback on either of these two treatments would be appreciated.
CommentJenniferL: I just want to add as well that my die-off also didn't involve my vulvodynia getting worse - I get very depressed, I was haven't trouble focusing, everything seemed serile and my lower legs became really heavy. It was the exact same symptons I had in the doctor's office when they injected me with Candida
CommentAllison: I also wanted to add that you can do a home candida test. When you get up in the morning, before you have a drink, brush your teeth, anything, get a glass of water and build up some saliva in your mouth and spit into the glass. I think it can take 45 minutes, but if the saliva drops to the bottom or even if it just causes "strings" to form down from the saliva, then you have candida in your system. If it floats you don't. My saliva fell almost instantly to the bottom - but I was also told by my natural doctor doing an acupuncture point reading that I had very high levels.
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CommentThanks to all of you who have written your stories. My name is Gail and I was suffering for 6 months before I was diagnosed. Now, I'm going to my 3rd specialist(first was wonderful but didn't help. Second told me I was a "hopper" b/c I was seeing a new doctor-I literally cried in his office he was so rude) now I'm seeing Dr. Kellogg-Spradt in Philly tomorrow. Some of you mentioned her. Is there anything I need to know before I go? I have vulva vestibulitis - they say it's caused by HPV but I've never had the warts. I was also diagnosed with horrible candida by a doctor in CA(went for help with chronic fatigue). I went on the no wheat/flour/sugar diet for awhile but it was really difficult. Does Dr. Spradt do anything in regards to testing for this? I also have anxiety/depression issues(who wouldn't after all this vulvadynia suffering) which I think is caused by years of prednisone/drugs for cluster headaches. Any suggestions from anyone would be great. This started last July after having sex. I had been in a car accident 2 years prior and was doing rehab on my lower back/SI joint so I hadn't has sex in a long time. The pain/burning/irritation was beyond the imagination so I thought I had std's of some kind. A year of every test imaginable has led to nothing but HPV(I'm happy but frustrated b/c I still have no answer). Pain is worse about a week after my cycle ends and even though I changed to all cotton tampons/pads, I still have the pain. I've tried every drug/cream possible so I'm up for any suggestions you all might have. I have found relief knowing I'm not alone in this hell. Gail
CommentHey check this out, looks like doctors finally are admitting birth control pills can cause our types of symptoms: http://www.thedoctorslounge.net/gynecology/articles/contraception/pill_sexual_dysfunction/index.htm
CommentTo Gail: Hello, Gail, if you start reading many of the entries here, you may find a lot of good advices and solutions. Depends on your wish to try this, or that. For example, the solution of Jenn - chinese medicine, seems working perfectly for her. My solution - the homeopathy Boiron, is working wonderfully for me. Depends also on how long time you would like to invest in the treatment, and how much you can spend. I am not american, I'm living in Italy being bulgarian, and I don't know how is the situation with the insurances there in Ameirca. Just to underline that I am spending for my homeopathy from my own pocket, and am very very satisfied of the results. They are slow, but progressive. The best of it, is that I eat everything. The only one restriction is to stay away from caffein, but I do take sometimes decafinated coffee, drinking a lot of water after that.The other best part of the homeopathy is that your problem get cured forever, because it's not masking the symptoms. It's actually healing the whole body from the depth to the surface. A good homeopath will give you the right treatment in a couple of hours, and will never call you often to his/her office. So, that's it, you're free to choose your own way:) Good luck!
CommentI also have Vulvar Vestibulitis. I have heard that it can be cuase d by HPV, but it is not always caused by HPV. I have been tested and results were negative. I have full body burning/pain caused by yet another disorder, Fibromyalgia, VVS can be a symptom of FMS. It is always good to get tested for everything when diagnosed for VVS, but I hope your doctor isn't saying everyone who has VVS has HPV, because I can prove that theory incorrect. If you have CFS, you may also have FMS, but depression can also cause fatigue. And you are correct, who wouldn't be depressed having pain all of the time!!! But I feel it is more of a sadness, because true depression is a chemical imbalance.
CommentI have been using GNC's SUMA for years and it REALLY helps me a lot (Although I've been tested and don't have the gene). GNC stopped making the product and I am running out. I have been told that they are the only manufaturer of the standardized product. Does anyone know of another brand of SUMA that has been effective? PLEASE. Thank you.
CommentI've been reading the last few posts, and I remember hearing about a gene that has been mentioned a few times. Is this the one where a lot of women that have it are fair-skinned, and have many sensitivities? Could someone explain more about it. Hopefully, it hasn't already been posted and I missed it. Thanks for your time.
CommentSuma is just a root from a plant. GNC is not the only company who manufactures it and they are certainly not the first. Go to Google and type in SUMA and you will see other stores in which you can order it.
CommentI don't posts here that much anymore for a couple reasons, main reason is from rudeness of others. But I will just say that something that has helped me out. We all know that this disease can wreak havic in your life and at work of course. I got tired of taking off work, calling in sick, using vacation times to stay home and deal with "VULVODYNIA". So what I chose to do is, stay on my yeast/sugar/oxolate free diet, create my own personal adult website, It consists of movies and photos. I get paid while I sleep. The income is very lucrative and it pays ALL the bills! I've been my own boss for 2 years now, IF (and most of the time I'm not because I know how to keep my diet under control), I'm in pain, no big deal, just drink LOTS of water to cleanse myself out, take Capryl if I feel yeast comming, and I don't have to worry about the added stress of trying to work while sitting all day in pain. So perhaps some of you can just quit your job and try this as well! It worked for me and hopefully it will work for you!
CommentI
CommentI had some totally unexpected success lately and I am almost afraid to talk about it in case I jinx myself. Here's what happened. First of all, I had been having a lot of pain from vulvodynia. My Elavil had stopped being effective although I was still taking it. Anyway, at the beginning of June I had a tooth ache. I called my dentist and told him it was very painful. He told me I that since it was too painful to even touch, I needed to start on antibiotics. So I picked up my perscription of amixicillion(sp) (7 days worth) and started taking it. Now you may or may not know this, but if you are having pain in one area of your body and a worst pain appears somewhere else on you, the first pain goes away. For reasons that are not fully understood, the brain shuts off the weaker pain. That' what I've read in several places and it apparently was happening to me. Well, my toothache was horrible so naturally the pain in my vulva disappeared. While waiting for the antibiotic to start fighting the tooth infection, I was in bad shape. So I took one pain pill- propacet. It lessened my tooth ache to a dull ache and I was in a very relaxed state. And my vulva did not start hurting again. I had the root canal done a few days later and finished out my antibiotics. And I have been pain free ever since! I even had great sex! Painfree! I don't know if this was just a coincidence or a tempory period of relief. Maybe I had an infection all this time? Or maybe I was having spasms that I could not feel (-which is one theory) and the propacet stopped them. I don't know, but I have been pain free for over a month! Like I said, this may be temporay, but I feel GREAT! Good luck to all!
CommentCL, that's awesome. I hope you remain painfree!!!! Sue
CommentCL, that's awesome. I hope you remain painfree!!!! Sue
CommentHey CL, that is so great that you've found relief. HOw long have you had symptoms? ALso, what's propacet? hope you stay well and feeling good.
CommentHello everyone. I am 36 years old and have had vulvodynia for a few months now. It started right after I had my daughter 7 months ago. I noticed how I was urinating more frequently but the doctor could never find any kind of infection. I can't tell you how many antibiotics I have been on in the last 7 months. The pain is so unbearable. It is so hard to sit, the pain is constant. Everytime I walk into my doctors office, I can see his face wondering why is this woman here again? It's making me feel so down and out. I have tried calendula,calcium citrate,cranberry pills,B12 pills,tea tree oil creams and nothing helps. Yesterday I got online and I started reading of other people having the same symptoms as me. One of the ladies told me that a compressed disc in your back can cause vulvodynia and the frequent urination. She told me I should see a PT. Maybe this explains why the pain sometimes going from my buttocks to my legs. This maybe why the other things ren't working for me. Some how I think I have nerve damage from having the baby because this is when all of my pain began. I don't want to have any kind of surgery because I feel as though it will just cause me more problems in the long run of it. I don't see how some of you have held up as long as you have with this? I have only had it a few months and it has totally been a nightmare for me. I wish all of you the best with this and it might not hurt for you to have a chiropractor to check your back out for you. I'm thinking of having acupuncture. Who knows, this may do the trick? Wishing the best to all of you!! Allison
CommentAllison- I have had symptoms for about 5+ years. I was not prone to yeast infections, have never had a urine infection, and was happily married to a great guy. One day about 10:00 a.m. I suddenly started feeling the pain. It stared out as vulva vestibulities. That is pain on the outside area. I tried inferon(sp) shots and even had surgery. All I learned from that was to avoid wearing tight fitting pants. Also, my pain would totally disappear whenever my period migraines showed up (notice again how the pain of one would cancel out the other pain? Could this be hormonal?) Then one day I woke up and said, Wow, the pain is totally gone! However, later that day the pain appeared inside the vulva which is called vulvodynia. From this web site I learned about the book "V" by Elizabeth Stewart and I bought that. It had a section on my problem and the treatment that had some success was Elavil. So I went to my doctor who put me on that and I had immediate success literally overnight. I was in great shape for about 4 months but then it stared wearing off. So I had read that you can go off elavil, then get back on and it will help again. Which I did. It took about a month for it to kick in and I was once again pain free, but it only lasted about a month and then it was back to the same old pain. That's when the toothache thing happened. By the way, I am 50 years old. When I found this site, I tried everything that was suggested, from the calcium/magnesium pills to the low oxalate diet. I would get disgusted with the women who insisted that natural products were to only possiblecure for this. Some of these (I call them)earth-mothers would get downright rude when anyone suggested medication. They were so closed minded when it came to science. But I was desperate and tried all those crazy remidies. Now I am pain free and I'm not sure why but I am feeling great! Propacet is like a darvocet (darvon). Good luck to all!
CommentTo CL: CL, it's not also very open minded to get disgusted with the women who insisted with the natural products. Actually, insisting in whatever has always its own reason. Look at me (if you could!), I am 32 years old, suffering of vulvar vestibulitis since 2 years, and curing myself succesfully with homeopathy, started at the end of January this year. I almost forgot what is having pain, because it's not anymore appearing. The psychological part (overcoming the fear of feeling it again) is the next step. And that's what I'm fighting with now. Still didn't stop the homeopathic treatment, because there are things to follow untill the body recovers completely. The wrong understanding for these type of remedies is everywhere, I personally didn't even believe in them before getting inside this problem, being just married. There is nothing horrible than this, and many women that are posting here know it. The truth is in the middle of the street - everyone of us has to look for her own treatment, because the pain of each body comes from diferent problem. So, it has to be cured, not masked, as many times happen with the traditional medicine. I'm glad you found your own one!
CommentHi agian. To tell you the truth, I am so very happy we have this website to let me know that I'm not crazy after all. I'm willing to try anything right now as long as it will ease this pain. My next Dr appointment isn't for 2 weeks and I am thinking of asking for elevil. My sister has a nerve disorder and she takes elevil and neuorotin to ease her pain. Should I go in and ask my Dr for this knowing how he can pop and attitude because I am seeing him so much. It's not like I enjoy shelling out money for him to tell me that my vulva pain is all mental. What about herbals? Does anyone know of anything close to elevil that can sooth the nerves like it does? Thanks to all of you for letting me vent. I really needed it!!!!!!!!!!!!! Wishing you the very best!!!!!!!!!!!!! Allison
CommentAllison- Don't be afraid to try the elavil. It's generic form is called amitripylene. It cost me $4 for a month's supply. The side effects are realitively minor. Have your doctor start you off on a low dosage of 25mg/day. They say it takes a few weeks to build up in the system. Mine worked wonders within 24 hours. The first day I was very tired (a common side effect) but by the next day I was back to normal, and pain free. I was very apprehensive about trying a medication that is commonly used to treat depression especially since I did not have depression. But if are not suffering from depression, then it will have no effect on your mental state. Like "the pill" is used to prevent pregnancy, it is also used to regulate abnormal menstration cycles. Same with elavil which is a pill for depression but it is also serves as a nerve block. One pill can provide several different for various ailments. I was constantly making appointments with my doctor and others in his practice. I was the one who had to aggressively pursue treatments because the doctors did not seem interested. I guess if it isn't life threatening, the doctors aren't concerned. Especially if they really don't know how or what to do to help us sufferers. Go for it and keep us posted. Good luck to all!
CommentAllison- Don't be afraid to try the elavil. It's generic form is called amitripylene. It cost me $4 for a month's supply. The side effects are realitively minor. Have your doctor start you off on a low dosage of 25mg/day. They say it takes a few weeks to build up in the system. Mine worked wonders within 24 hours. The first day I was very tired (a common side effect) but by the next day I was back to normal, and pain free. I was very apprehensive about trying a medication that is commonly used to treat depression especially since I did not have depression. But if are not suffering from depression, then it will have no effect on your mental state. Like "the pill" is used to prevent pregnancy, it is also used to regulate abnormal menstration cycles. Same with elavil which is a pill for depression but it is also serves as a nerve block. One pill can provide several different for various ailments. I was constantly making appointments with my doctor and others in his practice. I was the one who had to aggressively pursue treatments because the doctors did not seem interested. I guess if it isn't life threatening, the doctors aren't concerned. Especially if they really don't know how or what to do to help us sufferers. Go for it and keep us posted. Good luck to all!
CommentHi once again:)) What about Paxil? Do you think it works as good as Elavil? My doctor gave me a few samples of Paxil right after the baby was born in case I had postpartum depression. I never had it so I never took it. I decided to go ahead and start on it since it is an antidepressant. I'm hoping it works:)))))) I'm going to ask for Elavil but I won't see my Dr for 2 weeks and I need something now. That's why I decided to go ahead with the Paxil. Hope all is going great!!!!!! Allison
CommentAllison, I know Paxil is used for depression. Is it also a nerve block? I don't know. You'll need to look that one up and find out. Elavil (aka amitripylene) is probably a lot cheaper than Paxil because Elavil is an older drug that has been in use for probably a couple decades whereas Paxil is relativily new so it costs more. In the "V Syndrome" book by Dr. Elizabeth Stewart, she recommends Elavil and I don't remember her mentioning Paxil. I would have noticed Paxil since my husband once took it to treat depression brought on by a head injury. Check it out.
Commenti have found that changing to organic cotton underwear REALLY helped my symptoms reside. many fabrics use pesticides and chemicals which can triggger v. symptoms. also when you sweat, change into something dry as soon as possible!
Commenti have found that changing to organic cotton underwear REALLY helped my symptoms reside. many fabrics use pesticides and chemicals which can triggger v. symptoms. also when you sweat, change into something dry as soon as possible!
CommentYeah, the Paxil made me pretty sleepy. I did look it up online and it has been used for pain management but I don't think they use it often. My Dr apppoinment isn't until August 7th, they couldn't see me sooner. I'm kinda in a stand still on what I should do to ease the pain. The last time I saw him, he told me I had a 2nd degree prolapse of the uterus and a cervical erosion> It's weird because I had been in his office 1 week prior to him telling me I had cervical erosion and he never mentioned it. I was following up on my ultrasound when he found a cyst on my ovary and he told me to come see him in a week, The following week he tells me I have an erosion on my cervix but he never told me this the week before. HOw could he miss that? It's putting big doubts in my mind if he knows what he's doing. When I asked him to check me for vuvlovydia, he asked me what it was and I thought he was the Dr? The only reason I have to go back to him is so that he can do cryosurgery on my cervix for the erosion. He never told me if I really needed it or not. I've been reading alot on that cryosurgery, and it seems sometimes it can do more harm then good. The only thing I really care about is treating my vulvodynia. After all of this is said and done, I think i will go retreat to a tropical island for R&R:)))))))))))))) Wishing the best to ya'll!!!!!!!!!! Allison
CommentAllison, this is just my opinion but I really think you should NOT go back to that dr. EVER AGAIN! This condition is not to be taken lightly and most docs don't even know what it is - looks like that includes your doc. Find someone else. Ask around. Uneducated and uncaring docs ruined me - it would be just aweful if the same happened to you.
CommentTo Allison: I agree that if possible you should see another doctor. My wife was going to the same gyn for many years and after she got the symptoms of vulvodynia and her doctor could not help her, he actually avoided her. Doctors must feel like failures when faced with this illness that still has no know cause or treatment. They treat the symptoms usually with no positive result so rather than admit their frustration with the illness they turn this frustration towards the patient. I've posted here for years that my wife gets a recurrent tear at the six o'clock position and after many different doctors we are no closer to a reason or treatment. You should not have to put up with any abuse, insults, accusations or mistreatment from the doctor you are paying. Move on and best of luck.
CommentHello, Somebody know a specialist for Vulvodynia on Monterrey Mexico.??
CommentWell, that is just a disgusting show of thanks for your being cured. Posting things like that asks for rude comments. She gets cured and then starts her own personal slut page. And here are the rest of us who are in loving relationships and are monogomous and we are still sick. We don't need to hear that you got well and are putting your nastiness online for all to see. How fair is that? The whore gets well while the rest of us who aren't sluts stay in pain.
CommentHi again, You are so right about changing doctors. I've called a few and the soonest I can get in is next week, so I'm hoping maybe they can help me with this. I just hope this will be the right one. My greatest fear from vulvodynia is what if it turns into cancer one day because I'm not treating it the way it needs to be treated. I guess that's my greatest fear because not too many doctors know how to treat it yet there are so many women who have it. It's not as rare as it seems but I bet you my Dr knows more about a hysterecomy then he does about vulvodynia. Any thoughts?? Best of luck to all Allison
CommentTo Allison: My wife's gyn of many years new it all, he was a great doctor with a wonderful manner. That said he could not treat or cure my wifes problem so that made him a failure and it also made her a problem he wanted to avoid in my opinion. I've never read of the symptoms of vulvodynia turning into cancer in all the years I've read this site. In general the most informed doctors my wife has seen could only offer the desperate of treatments which involve anti-depressants. These may calm down the nerves causing pain but there are many side effects and they are of no use in treating many of the other symptoms. I hope you asked the receptionist at the new doctor's office if the doctor treat patients with vulvodynia? That became a standard question to ask before making the appointment, best of luck and stay strong.
CommentLichen Sclerosis can cause cancer in a small number of patients, but I haven't heard of any other type of Vulvodynia causing cancer. I have L.S. and Vestibulitis. Lucky me. I see a Dermatologist every year for the Lichen Sclerosis and am STILL searching for a competent Gynecologist to help me with the Vestibulitis.
CommentARGH!!!! I think I'm starting to see why ?? doesn't respond here anymore. How can you possibly say that ?? does not deserve to feel better??? When I read the post by ?? I thought it was great that she found a way to feel better and have a career. Maybe this isn't your approach =====, and what works for some might not work for others, but please don't discourage others from posting - I want to hear everyone's ideas.
CommentI'm not going to comment on you calling me a whore. The Vulvodynia causes so much pain in addition to angriness. But If you called me that to my face, things would get really ugly! Anyhow, I was afraid to posts that ad because of people like you! I'm glad that Jenn understands and that she did not criticize me. Anyway, just want others to know that I am not trying to be rude or nasty or offend anyone. I was in a monogamous relationship to until my husband could no longer deal with Vulvodynia. We divorced, I'm single and after the divorce, I was able to concentrate on me and my health. I took better care of myself, my diet and just got tired of having to deal with the stresses of sitting down all day at work and or having to explain to take off of work due to constant pain. It just wasn't working anymore. I've been at my job for 5 years, had vulva pains for 2 years and I think that going into the business I chose, being my own boss, was the bests thing I could do to help me get better. I mean because the stress decreased drastically....Anyhow, to the person who called me a slut, I'm not. I'm just trying to take care of myself, now that I'm single, concentrate on balancing my body back. I will not get into any relationship until I feel I could trusts a man that can handle the fact that I have food allergies and doesn't get disguisted if I get one little yeast infection. Anyhow, I will go now. Take care and god bless!
CommentI have a very strange side effect with Amitriptyline (ie elavil, endep etc) and was wondering whether anyone has experienced similar. My tongues twitches and as I have increased my dosage it has got more severe and my arms and legs twitch occasionally as well. The most worrisome thing associated with this is a blackout feeling I get every so often that only lasts a microsecond. Doctors I have told don't seem concerend but really how reliable are they given the complete **** up that has been the management of my vulvodynia generally. I don't think the endep is causing it because of the meds my tongue with twitch say once a fortnight before......I'm most concerned that I have something bad happening with my brain and the meds are just amplifying the symptoms. It happens a lot when i read or talk and it takes me ages to read, say, type things (almost like I feel dyslexic). Does anyone else experience muscle twitches? or other neurological side effects? I can most compare it witth the feeling you get when you are falling asleep and you jolt awake (I think its called a myoclonic twitch).
CommentCase in point - one of those sentences made no sense whatsoever. I meant to say 'I don't think the meds are causing it because my tongue would twitch when I was off them about once a fortnight.'
CommentTo ???: I don't think women who make money in adult entertainment are sluts or whores and the career choice you made is your personal choice, but to suggest others here do the same is crossing the line of good taste and sensitivity. Given the serious nature of the various symptoms of this illness and the devistasting effect it has on the abiliy to have sex and maintain a relationship to suggest to these ladies starting their own adult website is cruel and thoughtless. Good for you that you are managing your illness and have found a profession that fits your needs but you have to admit given the extreme physical and emotional pain this illness causes many women who read and post here your suggestions were unthinkable. I'm not aware of a site for men who experience genital pain and erectile dysfunction but if one exists and I post that as a former sufferer I find that performing in adult entertainment fits my employment needs and so on, I would understand the upset of other men who post there and suffer from the loss of their sexual health and stable relationships in additon to constant pain due to their illness. I have always felt the exchange of information is helpful and this is the place to ask questions and give advice but your suggestions are not caring or considerate of others here. I say this as a man who loves sex and has no negative opinion of women who profit from pornography but is compassionate of the suffering taking place by so many of the women with this illness. Rethink your posts.
CommentI think it's really sad that ?? had to post that horrible thing. How exactly is she a slut and whore? just because she found a way to deal with the pain on her own in the absence of a cure? you are one of the most horrible people that I've ever read something from here, you sound exactly like the doctors we all go to see.
CommentHello Everyone, I am just starting to read up on Vulvodynia(evoked). It all started when I got my period 6 years ago. I started using tampons and it hurt everytime but I figured that was just the way it was. When I started having sex at 17, it hurt like hell but again I figured thats just the way it was & it would go away soon. I stopped having sex & broke up with my then bf cuz I couldnt take it anymore. Just after I turned 18, I again tried with another bf. This time I tore. I went to the walk in clinic & was told that I have a hymen problem. I was put on meds & creams & was sent off to a gynecologist. Where he told me I had problems. He tried to do a pap test but I cried. He told me he had to go get the child-size clamps that he used on rape victims. I cried even more. Since then I have been to numerous nurses,drs and ob-gyns. I have now been told that I have Vulvodynia Evoked(pain only from touch in a certain area) I am on ELAVIL & XYLOCAINE GEL. If anyone knows any information about either of these or heard about whether they work or not, it would be really helpful. I have been on them for seven weeks and now have it go on it for another 6 because they havent worked. I go back in 7 weeks for another follow up if this doesnt work than I have to go in for surgery. If anyone has any information on the surgery that would be extremely helpful. I have only been under the knife once for an appendectomy(removal of the appendix) somthing simple right? well they messed up really bad and I ended up in hospital for a really long time & I am terrified now. Thanks for listening any help would be greatly appreciated Victoria
CommentI think its great when others come on and tell what has worked for them. However, I have to agree with Franks posting. Telling the women here that you run an adult website was unnecessary. That has nothing to do with your getting better and as Frank said, it was insensitive. Just like all of the posts advertising Viagara.
CommentVictoria, it may take more time for the meds. to work and please don't rush into surgery. That should be a last resort. You can try other meds, physical therapy, herbs, Acupuncture first.
CommentHi again. It's been a long day for me. I've been in alot of pain all day. I've called a few different gyno Dr's and they aren't taking new appointments for a few more weeks. The pain is so unbearaable at times. Yesterday, I just laid down and cried. The baby is 7 months old and I'm in so much pain to do anything. My husband is a blessing and he is helping out alot with the children. I told my sister about the elavil and she said she was on it at one time and now she is taking neurotin. I called my Dr back to see if he could prescribe elavil for me and he can't do it until I see him. What should I do for this pain? Not only is my vulva hurting, but also deep inside of my vagina and my lower stomach( where my bladder is) and lower back is hurting. I've been layng down all day. I dont feel much like doing anything anymore. Not only can I not see my Dr for a few weeks but any Dr. Everyone is booked up. I don't know what to do anymore. I'm just tired of hurting. I hope all of us start feeling better soon!!!!!!! Allison
CommentDear Allison, I feel very bad reading about your pain. Why don't you try with homeopathy? I don't think many women here take me seriously when I'm writing about it, but I'm curing myself (vulvar vestibulitis, maybe started with vulvodynia...never got the right diagnose...) since 27th of January and I almost forgot what is feeling the pain, full with discomfort. The only diference between me and you, is that you have your children, and I don't. That's why I can't be completely sure what exactly happens to you. But a homeopath-specialist would definately help you immidiately. Why don't you give a try? The homeopathy I'm taking is made by "BOIRON", the pellets are white and have a taste of sugar. They don't cost a lot (I spend something like 16 euros every 2 months, living in Italy and not using any insurance), but the dosage is very important and individual, could be given to you (as the names of the medicines) only by your homeopath. Please, do something as soon as possible, the pain shouldn't cross some limits!!! Take care of you, and hope to hear some great news soon! Chiara
CommentI have used both Elavil and Xylo. Gel. The Elavil was great for my moods, since having pain all of the time can make you "depressed", angry, etc. But it did not help MY pain. It made me tired as well so I went off of it. The Xylocaine Gel made me worse. The gel was sticky and it was irritating when it dried on my skin. My present gyn. said not to use that. She gives me Lidocaine ointment. She says no gels or creams only ointments. I only use it when I am ovulating, since that's when I seem to flare and need it. It will sting for a few seconds when applied, if I am really bad that day, then it numbs. I used to go through at least 2 tubes per month, now a tube lasts for about 4 or 5, depending on how bad flare ups are each month. I will not comment on the Elavil, since its helped others, but I would not use the Xylo. Gel. Switch to a 5% lidocaine OINTMENT. They have a 2% as well, but I didnt think it worked.
CommentHello everyone. I hope everyone is doing ok today. I'm still hurting, slept most of the day. I called both Drs to see if they could get me in sooner and they couldn't. I was so desperate earlier, I called the ER to see if maybe they could help me until I see the doctor and the nurse told me the doctor who would examine me wouldn't be a gyno doctor. I'm really thinking about asking for a biopsy when I do go in. I just want to put my mind at rest. Some doctors don't like for you to ask for things, they want to be in control, but still, I just want to rest my mind. I guess my biggest fear is having cancer because of the severity of the pain. My glands are so swollen, it's like I'm sitting on my barth glands because they are so irratated and red. Back in April, my doctor lanced my skene's glands because it had an abcess on it. It took the pain away in my left labia but 4 weeks later it was back again. My husband also told me he sees little white pimples on the vulva region and 2 flat bumps( looks like 2 ant bites) I know I dont have a STD because they checked me for everything just a few months ago when I was pregnant so I have no clue what is going on. If any of you are up to chatting, I have yahoo and MSN messenger, we can always chat. Just send me an email and we can put each other on the buddy list. Hugs :)))))))))))) Allison
CommentHi, About 3 months ago I started feeling pain in the vulvar area. I had a yeast infection at the time, so I figured it was just pain related to that b/c I had had one yeast infection before. But after a few weeks, the pain still didnt go away. I went back to the doctor a few times, but she didnt know anything, so I switched doctors and she told me that it could be vulvadynia. Then I did some research and found out that it could be the result of a slipped disc, which i was diagnosed with last year and went through physical therapy to fix. When the pain first began it was along my inner thigh too. But I stopped wearing tight clothing, and the inner thigh pain went away. My boyfriend is sympathetic, but it's just horrible to have painful sex. I havent gone to a specialist yet, hopefully within the next week I'll be able to schedule an appointment. I was wondering if anyone had any information for me. Thanks, Lyndsay
CommentHi everyone I hope this doesn't offend anyone, but since I love to write poetry and it helps to get my mind off pain, I wrote this poem about dealing with pain and hoping for a cure for this one day. The pain was always hurting The pain was too much to bare One thing I am certain I'm glad we have this place to share It helps to know I'm not alone We just want the pain to go and just be forever gone I know it's hard Hurting both day and night But you must move forward and fight with all of your might One day there will be a cure Until then I will patiently wait This I am quite sure For now, we must all keep the faith Life can be lovely You just have to set it in your mind The pain won't always be And the sun will surely shine Hugs to all l!!!!!!!!!!!!!!!!!! Allison
CommentTo Allison: That was very sweet, keep you positive attitude and hope for the best.
CommentHI everyone. Tonight I did a self exam where I was hurting and have been hurting for a few weeks. Actually I've been hurting in a few spots but this one spot made me look closely. I noticed I had a pea sized moveable lump on my outer labia( kinda in the middle of my outer labia). It hurts when I sit a certain way. Everything seems to be on my left side. The pinching pain, the pain going from my buttocks to my leg, it is all on the left side. Does anyone have any idea what this is? Once again, Im getting scared and thinking the word cancer. But don't you think if I had cancer, my glands would be super swollen? I'm suprised the Dr at the ER last night didnt see it. Im so worried, looks like another sleepless night. Hugs to all Allison
CommentHi, I was just directed to this site and am quite relieved. I've suffered from vulvadynia for a year and a half, it started off as just painful sex but continued to get worse from there until it became constant daily burning and stinging (almost feels like 100s of insect bites) The pain started when I began a relationship and went on the pill. I went to my doctor continuously and of coarse I was treated for yeast infections and BV. They assured me the birth control had nothing to do with it. I just started seeing a gynacologist recently (also diagnosed with HPV) and even he told me the pill was unrelated. However when I decided to stop taking it I found the pain to be much less frequent and severe, the painful sex did remain though. The latest time I saw the gyn he put me on my first treatment, antidepressents also I expressed concern about itchiness and he put me on diflucen cpasules (1 every week for 6 weeks) for a yeast infection. I took the first capsule last week only to find it doubled the pain I was feeling and it returned to the same state I was in when on BC. *Sigh* I'm really stressed about this, I don't know whethere I should keep taking the diflucen or not. I also feel like the pain has changed from an intense stinging to a contionous soreness. I'm only 18 and I'm so upset because before I started seeing my bf I slept around and had no problem at all now when I actually want to make love I can't :(
CommentHas anyone here ever had success with flexeril?
Commentlooking for tetrasil info
CommentI was diagnosed with vulvodynia about 3 years ago, then recently re-diagnosed with vulvar vestibulitis. I had found a treatment on a medical journal that suggested taking diflucan regularly and also doing biofeedback therapy. I was just starting this treatment when I found out that I was also pregnant and had to stop the treatment. I had always hoped that getting pregnant would help with this problem, but it doesnt seem to have helped at all. I am in my 4th month and was curious if anyone on here has had kids while having vulvar vestibulitis. I am scared as to how the delivery will help or hurt more and if there are any extra steps that I need to take to prepare for the delivery. Thank you for your help
CommentHi! I'm 31 years old and from Denmark. I was searching the internet for information and found this wonderfull site! In Denmark this problem is very low profile and that has been very difficult to get any kind of help. I have been suffering from vulvodynia for 14 years and yesterday I had a biopsy taken because the pain and itching is worse than ever. Now I just have wait until August 15th for the answer. I'm scared and I would really apreciate if someone would write to me. I'm also very interested in hearing about Lichen Schlerosis. Maybe that's what's wrong with me. Please write me. :-)
CommentHi! I'm 31 years old and from Denmark. I was searching the internet for information and found this wonderfull site! In Denmark this problem is very low profile and that has been very difficult to get any kind of help. I have been suffering from vulvodynia for 14 years and yesterday I had a biopsy taken because the pain and itching is worse than ever. Now I just have wait until August 15th for the answer. I'm scared and I would really apreciate if someone would write to me. I'm also very interested in hearing about Lichen Schlerosis. Maybe that's what's wrong with me. Please write me. :-)
CommentHey Frank & Christina! I posted back in 2001 and 2002. I was known on here as anonymous. Christina I emailed you a few years ago asking about your condition. Glad you are doing better. I am much better. I sometimes flare up. Vagifem helped me along with other stuff. I went through menopause and that has helped, too. Right now I am sort of flared up, but nothing like the past. I can wear loose cotton pants now. Frank I tear sometimes in the 6 o'clock position, but it heals quickly. We just don't have sex everyday. Wonder what happened to Lynn the black woman from Arizona? Last I heard she was pregnant. Hope she is doing well.
Commenthi trice, i am 35 and i have vestibulite for a long long time. i did got pregnant 2 years ago the vestibulites gets worse becouse of the low estrogen. and i did talk with my doctor to have a c ceccion becouse i had a surgery before to help with my v vestibulites but i got worse so for sure i did not want anyone to cut nothing overthere anymore. i think a estrogen cream may help i will ask my doctor for my next one.if you want fell free to email me rosana
CommentTo Anonymous: Glad you are doing well. I have seen posts by the Lynn you mentioned recently and she seemed well. My wife and I don't have sex everyday although sometimes it happens twice in the same day. She also heals quickly from the paper cut like tear. I hope someday to find out why she started to tear in the first place. Still no answer and she and others continue to suffer. Why is there no agressive research? Why do t.v. personalities like Oprah and others avoid this illness? Is our society still so immature and stuffy that we cannot discuss vulvodynia because it involves the female genitalia? Heck, we hear more than enough about erectile dysfunction. I get dozens of junk e-mails a day to enlarge my penis or help me get an erection. I watch dozens of t.v. commercials regarding the same junk. I need my wife to be better, WE need research!!! We deserve real treatments not tranquilizers and antidepressants.
CommentHello, Does anyone know of a good Physical Therapist in San Diego that does skin rolling for VV? Thanks for your help. You can reach me at outlookin135@yahoo.com. -Patrice
CommentHi Anonymous, I am glad that you remember me. I haven't posts here in a while, I just been reading the posts. So many women are getting this horrible disease and we are just getting younger and younger. It still wonders me how Drs are still ignorant about this condition. But anyhow, I am doing just fine, thanks for asking. I am still here in AZ, I just got back from a weeks vacation in NY. I just continue to watch my diet. I stay away from glutens and wheats. I eat some sugar occasionally, but just don't go overboard with it. Otherwise I pretty much consider myself painfree because I have this condition under control. I try to stay away from Antibiotics, I was pain free for 2 years, took antibiotics for JUST 5 days for a ear infection around Christmas and that started the pain all over again. Then around April or May I guess, I just stayed on my probiotics, vitamins, strict diet and I fee normal again. I want to have another baby but will do so next year when I'm more financially stable. I actually want 2 more kids but will settle for 1 more for now. I had posts a couple weeks ago asking if anyone wants to trade phone numbers and discuss our conditions on the phone. It will be more efficient I think. I can't never get on the vulvodynia chat and I don't know what's going on with that. Anyhow, take care and you can massage me back anytime.
CommentHi all, I am trying to treat my vulvodynia from two angles. If I had to pick a cause for it, I would think it has to do with a car accident I had 6 months prior to the onset of pain or it has something to do with an inflammatory response in my body. I've always been very sensitive to many things. I have very sensitive, fair skin, allergies, rosacea (and I'm only 25), interstitical cystitis, and vulvodynia/vestibulitis. I'm wondering if I have some food sensitivities that may be contributing to inflammation. I hardly eat any sugar, but I do eat a lot of whole grains including wheat. I want to try a wheat and sugar free diet. Lynn-Did you use any particular resources to follow your strict diet? Any books or anything that were helpful? I've read about an anti-inflammatory diet, for example, that says you can have real (not instant) oatmeal for breakfast. This is a really specific question, but is that okay to eat on your diet? I don't know if oats count as wheat. I'm trying to figure out what I can eat before I start the diet, because I am already underweight. I eat well and try to select healthy foods, but the stress of burning/sharp pain 24-7, on top of being in graduate school, and everything else has started to take its toll on me. I've tried and "researched" so many treatment options over the years, and have been very proactive. However, I start to lose my hope/drive at times when I am overwhelmed, and feel like I have nothing left to try to fix the pain. If it's not some sort of inflammatory problem, then maybe it has to do with my car accident. It caused a lot of muscle and ligament strain in my lower lumbar and sacral area. It also put my pelvic bones out of alignment according to my chiropractor. My chiropractor has just now been able to adjurst my pelvis back into alignment. I've had vulvodynia now for 3 years. I'm also doing E-stim therapy for the internal pelvic floor dysfunction my urologist diagnosed me with. My chiropractor feels that the internal work allowed him to finally move the pelvic area enough-prior to that my adjustments wouldn't stay adjusted. If the cause is mechanical in nature, I'm trying to find a PT knowledgable about vulvodynia and Interstitial Cystitis-but have had no luck. So, I guess I will have to wait to see if, now that my pelvis is supposedly aligned again, my nerves and tissues will heal enough to stop being in pain-which, I've been told, could take up to a year. Thanks for reading, and thanks to everyone who shares their story, because it is helpful to read.
CommentHi Lynn, I forgot to ask-how long did you have to be on the diet to see results. Also, what vitamins do you take? I'm glad that you have found relief. Take care, Annie
CommentI am so glad I found this website! I suddenly started having symptoms of vulvodynia at the beginning of March. I thought I had a u.t.i., b/c I had been on years of antibiotics for recurrent u.t.i.s, but the pain never went away and it became very clear that it was in the vulvar region, not the urinary tract. It took me forever to get a doctor's appt, and I saw 3 of them. I was given fluconazole and metrogel, finally (this after one of the doctor's told me it was just friction burn and she was very rude as well.) By this time, I had done so much research that I knew I had vulvodynia. The pain was just so bad, I couldn't even be around people when it flared up. It felt like 100 papercuts - especially the day after having intercourse, but also using tampons, or anything that touched the area. I noticed the pain lessened after the medications & I attribute that to the fluconazole. By the way, metrogel is disgusting. If you ever use it, keep in mind that there's a tissue paper like discharge for about 2 weeks. However, I was finally able to see a specialist and he diagnosed me w/ localized vulvodynia. I have a 12 week course of fluconazole and I have taken 5 so far. After week 4, I had a bad flare-up, but it was also close to menstruation and I've read that it can exacerbate the problem. On a scale of 1 to 10, I have pain of about 1-2 on a daily basis, not including flare-ups. I've also gone on a ph diet (acid-alkaline), which can be restrictive (I have to admit I don't follow it all the time,) but I believe that what I have is on a cellular level and anything that can help stop the pain is worth a try. It's basically a diet focused on raw vegetables. I bought some tea trea oil vaginal suppositories, but they didn't help, and neither did acupuncture. I might try the kaolin? (aged garlic) douche eventually. I read that worked for someone. As of last night, I've decided to start putting colloidal silver on that area at bedtime. It's worth a try, especially after all this time. Also, I do think it could be related to a clenching of the nerves b/c after jumping into a very cold pool, with a very flare-up, the pain stopped. However, cold baths have not helped since. Also, even though I don't take baths anymore, I make an expection for a salt water bath. I bought the salt that goes in a fish tank, so it's ph balanced and there's added minerals, plus it's cheaper than the stuff you buy at beauty stores. Oh - and I'm meditating and praying - all the time. I will do ANYTHING to make it go away forever.
CommentHELLO TO ALL....I am so very happy to have come across this website. Up until now, I have not discuss my VV diagnosis with anyone other than a close friend and my sister. They have both been great in lending a caring ear, but they can't even begin to imagine the physical pain let alone the negative emotional failout I am experience because of VV. So needless to say, I am very glad to have found a forum where I can voice my concerns and feelings with other women who can truly understand all the dynamics this condition encompasses. Long story short, I was diagnosed with HPV about four years ago. At the same time I started with all the symptoms associated with VV but thought the itching, burning, etc I was experiencing all had to do with HPV. Little did I know I was dealing with two separate issues. Lucky me.... ;-( I have since had a negative pap smear, so the HPV seems to be under control. Now I've been diagnosed with VV. I have been through it all. You name it, creams, amitripalene....and STD testing. I am now giving biofeedback a try to see if that will help. I am also currently being treated for a bacterial infection because my ph level is high. Nothing, I mean nothing, has made one bit of difference. I am SO discouraged. It takes all I have to put on pants and sitting for any period of time is almost impossible. After reading many of the comments on this website I am really thinking of trying to change my diet to see if that helps. I'm sure you all know how debililtating this condition can be. It affects me in so many ways, not just physically. The feelings of frustration I'm experience are overwhelming and I could cry when I think I may have to life the rest of my life this way. (Matter of fact, I do cry). I really feel like I am at the end of my rope. Does anyone have any words of encouragement for me? I will take any and all suggestions. Thanks Barbara
CommentHello Annie, if I stay on my yeast , oxolate, sugar, wheat, gluten free diet for a a week, I see good results. But I have to stay on the diet for a good 4 months straight minimun before I can eat sugar again without being in pain. The vitamins I take are probiotics - good bacteria, multidaily vitamin, calcium citrate.
CommentHello Annie, if I stay on my yeast , oxolate, sugar, wheat, gluten free diet for a a week, I see good results. But I have to stay on the diet for a good 4 months straight minimun before I can eat sugar again without being in pain. The vitamins I take are probiotics - good bacteria, multidaily vitamin, calcium citrate.
CommentHello Annie, if I stay on my yeast , oxolate, sugar, wheat, gluten free diet for a a week, I see good results. But I have to stay on the diet for a good 4 months straight minimun before I can eat sugar again without being in pain. The vitamins I take are probiotics - good bacteria, multidaily vitamin, calcium citrate. To BARBARA, you say you have bacterial infection. If the Dr gave you antibiotics for that, be VERY CAREFUL, that can make your V V worse. Some of us got here in the first place just by taking Antibiotics.
CommentHi everyone~has anyone ever thought there was a connection between foot preservatives adn this pain? I spent four months in Ireland and my pain was much less. Does anyone know if they add less preservatives to their food there? If anyone knows anything I would really appreciate it.
CommentTo Barbara: Barbara, I am curing my VV with only homeopathy. I do feel great (started at the end of January), I did forget what is feeling the discomfort and pain while sitting, wearing pants, washing gently...If you'd like to contact me for complete details, please feel free. Otherwise you may find all my entries here, started from the Twentyfifth Vulvodynia Guestbook. I do follow one of the best treatments, hope you believe me. Ladies, there is a light in the tunnel ! :)
CommentHi I had a horrable bout with this illness almost five years ago. I was so desperate to get relief I thought I was going to die! The sad part of my story is all my friends and family thought I was crazy. My doctors were kind but would simply say I would have to learn to live with it. Finally one of my doctors put me on diflucan 150 one a week. With in two months or three I began to get relief. I was so happy that I keep a standard dose of difucan with me at all times. During the worse times I wore dresses not pants (to binding) Now this is going to sound really funny but one of the gyn's I saw suggested crisco. I know what you are thinking and I was thinking the same but you know if you get desperate you will try anything and everything! But by putting crisco on the vulva area it seals out the air and this helped a great deal! Try it and you might be pleasantly surprise! Good luck to all of you and you will see the end I promise!
CommentHaven't posted here in many moons. Age 58, dealing with this for 2 yrs; did not start to feel better at all for at least 6 months. I have 3 cousins, two of whom are sisters, all of us have who have fibro; at least 2 of us have vulvodynia. For Allison re flexeril- it relaxes ALL your muscles- and makes you sleepy- try Skelaxin instead- more expensive but mnuch less tiredness. I use LIDOCAINE 5% ointment IMMEDIATELY if I feel any discomfort at all. The key is to breaK the pain cycle any way you reasonably can. I was taking Effexor ex 75 mg.day, but now only take it 2x a week; take 5 mg elavil to help sleep. Tried PT and biofeedback- both help somewhat; do Kegals, and inner thigh exercises, etc, The key with any treatment is to stick with it for at least 90 days regardless of whether you feel better. Not much will work in a day or 2 or a week or 2. Take garlic, oregano oil capsules , acidophlus. There is no magic bullet, but I do feel 80-90% better than I did when all this started. An understanding spouse & family are critical. Thank God I had my cousin and family, my husband and an encouraging gyno. I felt like I was going to jump off the nearest bridge and enjoy the ride. It was hell!!My theory is to try anything that won't harm me. I read everything I can get my hands on. Best of luck
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CommentI almost forgot- attack this topically w/ aquaphor also.Mix lido 5% ointment & aquaphor at first if it stings too long. It will always sting a little.
CommentI have a close friend who was recently diagnosed with lichen sclerosus, and I was wondering if anyone else has ever been diagnosed with this? I'd really like to be able to talk to someone who can understand what it's like to be going through this. Please email me directly if you might be willing to have a conversation. Thank you.
Commentwww.sexoffenderalliance.com
CommentAnybody have problems with their clitoris? I have what appears to be a tiny paper like cut on mine and is very sensitive. I've been putting on Neosporine ointment for a week now and it seems to get better and then it comes back again. I'm thinking that this is a hard area to heal as it is under the hood right on my clitoris and can't get dry there. If anybody has suggestions I'd appreciate it. Its very tiny cut and stings like the dickens. Ouch!! Thanks
CommentTo Sue: Hope you are not offended that a guy is responding to your post but my wife has had similar symptoms. In addition to a recurrent tear at the six o'clock position of the vulva she would get raw patches of skin on the inner labia and several times I noticed a tiny raw spot the size of the head of a pin on her clitoris. It goes without saying how frustrating it was to me that an area on my wife's body that was supposed to feel pleasure was in pain and there was nothing I could do to help. I haven't seen that damaged skin on her clitoris for a couple of years or so and I think a couple of things might have helped. First of all stop using all soap on that area of your body, use only water. No wash clothes, nothing except plain water to clean and rinse. She stopped all cremes and ointments, prescription or other wise. We did try vitamin E but I don't know if that did any good and as a lubricant I think it encourages yeast. Speaking of yeast, as you mentioned that area where the clitoris is located is especially prone to problems because of the covering of skin. I can't remember the exact word it starts with a "s" but it describes the accumulation of dead skin cells and other discharge that accumulate around the clitoris. This may be a bit uncomfortable but when your clitoris is not as damaged try to gently pull back the outer hood to expose it and using a Q-tip with either A&D ointment or neosporin gently work around the base to remove any accumulation that may be causing inflammation. I remember reading a year or two back of a woman who had discomfort and found a tiny pubic hair wrapped around the base of her clitoris. I don't think normal washing or hygene does what is necessary to clean this area. I've watched my wife shower and the way she goes over her private parts you'd think moral inspectors from the Vatican were watching her. I hope you didn't think I was rude or insulting, we really need to get over all our inhibitions to get help and answers to these problems. Best of luck and feel better.
CommentThe "s" word that you couldn't remember is smegma.
CommentHello Sue. Just wanted to say that when I first began my vulvodnia pain 6 years ago, it began with papercuts. What has worked for me is VANICREAM. You can get it from Walmart behind the pharmacy counter, you just don't need a prescription for it. You can also get it from Walgreens. It has worked for me and the papercuts never came back. In addition to using the cream, I washed my vulva with ONLY water, washed my undies with CHEER FREE soap. I don't have external vuvla pain anymore thanks to the vanicream. When I hurt, it is from urinating out high oxolates. Good luck to you.
CommentTo K.P.: Thanks, I couldn't remember it.
CommentHi everyone, I'm back again, My computer was down for a while but it's good to be back. Last week I went and saw my gyno Dr( the old one) he gave me a cream to use down there ( Clobetsol propionate) and said to use it 2 times a week because it was very strong. After I got home, I looked at my receite and the diagnoses was scleroderma circumscribed. Why didn't my Dr mention this to me before I left his office? The only thing he said was to use the cream sparingly and not to over use it. Can they make a diagnoses of this by just looking? I thought they had to do blood test for this? Anyway, I'm back to square one. Still in pain but now wondering about this. I'm really thinking of using Noni Juice or Aloe Vera Juice. Hey, at this point, I would try anything. I'm starting to get rectal pain as well. It feels like a deep pain coming from my rectum and vagina plus the lower back hurt pretty bad from time to time. For the last few days, I haven't really wanted to get out of bed. It takes everything I have just to get out of bed. I'm starting to wonder if my life will always be this way. I have an appointment for another gyno Dr this week. If she doesn't know, then I guess I will just have to learn how to live with the pain. My heart goes out to all of you who suffer from this. Hugs to all of you:))))))))))))) Allison
CommentTo Allsion: One of my wife's gyns gave her Clobetsol to try, it is supposed to be good for treatment of vulval lichen's sclerosis. The doctors are so desperate they will have you try all sorts of meds in the hope that one will help, problem is some of them may cause skin damage. I don't know what kind of test they can do but since the vagina and intestinal walls are so close together there is some times a bulging of one into the other which can cause a stabbing pain. This happened to my wife as a result of the strain due to giving birth. Maybe it can happen during the normal course of life without the childbirth event. Worth asking your doctor, by the way the doctor called it a rectocel and since the surgical repair my wife has not had that symptom. Take care.
CommentI am 26 years old and I've spent years trying to figure out why I can't have sex. I was previously diagnosed with vulvodynia and I've seen pelvic floor physical therapists which have helped relax the tightness in my muscles, but I didn't feel like it was a muscular issue. I felt like it was just because my vaginal opening was too small. I've seen countless gynecologists and specialists, and I finally saw a vulvovaginal disorder specialist who diagnosed me with lichen sclerosus and recommends that I have surgery to get rid of the scarring which has narrowed the opening of my vagina. The procedure he's recommending is perineoplasty, and I'm wondering if any of you have ever had this procedure? Also, I've had difficulty getting my insurance to cover the pelvic floor physical therapy and specialist appointments. Have you had any success with this? I've had trouble finding documentation on this, and I'd really appreciate your feedback. Thanks.
CommentI just wanted to share a success story. I found this page about three years ago when I was desperate because of the constant pain. I has about a year of nerve blocks and was on loads of pain killers and was spirialing down hill. I had back problems and problems with nerve pain down the leg. I convinced my nerosurgen that the vulvodynia pain might be comming from my back issues and he attempted several times as he worked on my back for other reasons to find the source and fix the vulvodynia but no success after 5 back surgeries. At that time I was in bad shape my body was shutting down from all the pain killers. My bowels were not hardly functioning even though I was on laxatives and stool softners I required enemas most of the time to go. I found a new pain doctor and he said we must get off the narcotics or it was goig to kill me. He prescribed a drug called Lyrica to start as I backed off the narcotics. The Lyrica is FDA approved for diabetic pain and my insurance would not pay for it because I am not diabetic but we paid and I started it. It took months but with the help of my husband monitoring and slowly adjusting the drugs we were able to reduce the narcotics by about 75%. As the amount of narcotics decreased my bowells started functioning better and the vulva pain diminished and stopped. If the bowels get slow or I get constipated the pain returns. I would like to still reduce or discontinue the narcotics completely as the Lyrica has few if any side effects and is as close to a mirical drug I and my pain doctor have ever seen. I can hardly believe that the source of the vulva pain was comming from the bowels but I feel I have proven it with the pain comming back when I have a problem with the bowels. My doctors are not sure if the bowel was pressing on a nerve or if the pain was referred from the bowel itself but reducing the narcotics and getting better bowel function fixed it. Good luck hope this helps some others.
CommentHi all, hope you are all doing good today. I'm just wondering if I don't have scar tissue formation near my vagina opening. On my last menstrual cycle, I barely bled at all until the Dr examined me and then I started blleding again. Here lately I have noticed pain near my vagina and anus opening. It makes me wonder if I dont have LS too. It seems with all of the Dr's I have went to that at least one of them could have seen something different. I guess I'm only wasting money to not find any help for this. Hugs to all of you:)))))))))) Allison
CommentHi everyone. I've had vulvodynia for 20 years now. I had itching, swelling and redness. After having children it sort of went away. After my fourth child I used a strong steroid for hemorrhoids which irritated my vagina and now I have the symptoms back. It has been three years now that I've had the symptoms back. I have now been diagnosed with Lichen Sclerosis because of the 20 years of irritation. It is horrible. I am trying a steroid Temovate but I don't think it is working. I'm terrified. Has anyone been diagnosed with Lichen Sclerosis?? I would love to hear from you and what might be working for you. Please write. Thank you so much, Jen
CommentTo Frank: Does your wife have Lechin Sclerosis? What does she use for treatment? Jen
CommentTo Jen: No my wife does not have Lichen's Sclerosis. She gets the recurrent tear at the six o'cock position either from sex or simply moving a certain way or even touching herself. She also gets itching, burning and occassional rawness of the vulva. Typical vulvodynia symptoms. The only medicine I know of for Lichen's is the one mentioned in posts by Allison and myself a couple of days ago. My wife has not pursued different gyns lately but none of the previous ones could tell us why she was tearing. Low estrogen was ruled out and so were several other conditions. Best of luck.
CommentHi Allison. I just wanted to let you know that when I get yeast infections, not only does it itch and burn in my vulva, but It hurts in my rectum as well. I also get lower back pains and it's just all apart of my yeast infection. So perhaps you may have this issue as well. I have no infections now, but when I do get a yeast infection, I take Capryl, Oil of Organo vitamins or I will take my Ketoconozole. Are you on a yeast free diet?? It's funny, I can eat lots of yeasty foods and be fine. But the MINUTE I eat a cookie, I will get a yeast infection. It's like the yeast I have in my system eats the sugar from the one little cookie and just grows out of of control. It's strange but that is how my body is. I am taking probiotics to help get my G I tract back on track. I hope this helps you. JACKIE- I had a "PARTIAL VULVECTOMY" back in 2/01. It was from damaged tissue caused by overgrowth of yeast and oxolates. The surgery was a success and thanks to that surgery, I was able to have painfree sex again. I've never heard of the surgery your Dr. is inquiring about. I don't have Linchen Sclerosis. But I hope your surgery is a success one as well.
CommentFYI- my last entry had the wrong email address.
Commenti am in my late twenties and last year i had surgery to remove endomestriosis. although they were not able to get all of it, i felt 100% better. my doctor put me on the depo shot to help with the endomestriosis. shortly after the depo shot i began having pain during intercourse as well as acne, which caused me to be on medication for that. the pain has become unbearable and although my boyfried of 5 years has been extremely supportive, i feel horrible. my doctor said i had vulvar vestibulitis and put me on medication but that hasn't helped and she is now talking about getting a shot in that area. i am seeing a second doctor today to get a second opinion. i am nervous that it is going to be the same answer. could the depo shot or medication i was on cause the vulvar vestibulitis? at this point i don't know what to do...how and what can i do to make the pain go away...and get my life back?
CommentHey Jen... have you researched the side effects of the shot? Seems to me that different kinds of Birth Control have sexual "disfunction" side effects... it's worth looking into. I know the shots are to help you since the endo. stuff... but it could be hurting you as well. Good luck :)
CommentHello Everyone, I've been reading this guestbook over the last few days and was hoping maybe someone could give me some insight. I have been suffering from vulvar pain for the past 6 years (since I was 18). It all started with what was diagnosed as a yeast infection and then months and months of unsuccessful treatments. Finally I discovered that my bf's parents had switched toilet paper and once I stopped using it, my sumptoms got a lot better, but I still experienced some burning after intercourse. It was bearable though, and for 4 years I did have some sex pain free. Then this March (after I started a new job) my symptoms cam back with a vengeance. My family doctor referred me to a specialist who REALLY listened to my story and after a lengthy discussion and examination, diagnosed me with Contact Vulvitis. He gave me a mild steroid cream to use for a short period of time (which gave me IMMEDIATE relief) and then a progesterone cream to use twice daily. At first I was really feeling better and even having pain-free and almost pain free sex, but after a few months (and another bad toilet paper incident at the cottage( I am feeling 10x worse than I was before. Now the pain seems to have spread to my rectum as well and I have even had some bleeding there. I went to an oncologist who couldn't find anything (even after a rather awful procedure with a scope that was similar to a colonoscopy). I've been following all kinds of rules (Ie: no soap, cotton underwear, no tight clothing, cool baths, etc etc etc).... I'm trying to get another appointment with the specialist, but I am scared that maybe I have something more serious that Contact Vulvitis. I was hoping maybe one of you have had some of the same symptoms? I have never experienced the thigh/buttocks pain or the "stabbing" pain many of you have mentioned here. For almost 6 years my pain has only been in the vulva area. But now it also seems to be lower at the entrance, and now in my rectum as well. I'm seriously feeling down and a bit depressed. I haven't been sleeping and am just looking for some possible answers. Do I sound like a candidate for VV? Any insight would be greatly appreciated. You can post back to me here, or send me an email at Jerry_Girl@yahoo.com Thanks, Heather
CommentI have great treatment and a lot of success in relieving vulvar pain at the WOMENS INSTITUTE OF SEXUAL HEALTH otherwise known as wish in Nashville, Tennessee. Until i met these wonderful ladies,,i did not want to keep living if the pain was all I had to look forward to. I love them all and thank God that they were able to give my life back as it was. If you read this ladies, know I love you. To anyone else, the best of luck. Contact these ladies. they know what they are doing
CommentI have been prescribed a steriod foam..from what I hear steriods generally make the problem worse over time..is it safe to use, what about for a short time?
CommentTo Kathy: Can you please post the link to WISH? Or just the phone number? I would really like to contact them. Thanks & Glad to here you are feeling good. To Sad: You'll probably find that the steroid foam will give you some relief, but it will make your problem worse if you use too much and/or for too long. What did your doctor tell you? When I was prescribed a steroid cream it was only for 3 weeks, and I had to wean myself off of it (ie: I started by using it 3 times a day for 3 days, then 2x a day for 3 days, then 1x, then every other day until it was once a week and then stopped using it).
CommentI was originally treated with yeast creams as well, even though I had no other symptoms other than a painful, irritated feeling on the vulva (when it first began) and I didn't even test positive for yeast. These creams made it worse so I quit using them. Then, I was able to see a gynecologist, and she originally diagnosed me with contact dermatitis on the vulva (which I think would be like your diagnosis of contact vulvitis). I tried a cream for that, it just irritated more as well. When I went back to the doctor, she finally diagnosed me with vestibulitis and vulvodynia. It really just means that you have chronic pain in the vestibule and/or vulva with no known cause. You don't have to have the "stabbing" pains that some women have in order to be diagnosed with it. Symptoms vary somewhat but I read a lot of women describing it as one or more of the following: burning, rawness, irritation, sharp pain, prickly, itchiness, sometimes shooting pains to adjacent areas, etc. It could feel like any of those things, but basically it just hurts. I would try to bring up your concerns about possibly having this diagnosis with your specialist. Hopefully, he/she can give you an accurate diagnosis. If it turns out that you do have this, there are many things to try, so don't lose hope. Just try to educate yourself on the possible treatments, and try the ones that you feel right about. There is a Vulvodynia Guideline written by many vulvar specialists in 2005 that gives a "run down" on the commonly used treatment options that you may want to look at if it turns out that you do have this. I forgot where I came across it, but I think you can just do a search for "The Vulvodynia Guideline" and you will find it. Other women on the board have also tried less "medical" approaches as well. I hope you are able to find some answers. I remember when I went for months not knowing what I had, and I felt better when I received a correct diagnosis. I wish I didn't have this, but at least by knowing what you have, you know how to go about planning how to treat it. Take care.
CommentThank God I found this forum! After 3 gyn's, a urologist, and 2 GP's, I have finally been diagnosed with VV. I have a vestibulectomy scheduled 3 weeks from now... I wish I could have tomorrow! I had a question for the other members of the forum who have had this surgery - Most of my pain and redness is in the skin around the urethra. It's not really in the U-shaped region that many of the websites I've read say is excised during the surgery. During the vestibulectomy, is skin excised from this region? I think this is where the constant burning I am feeling really originates. The rest of the tissue is sore to the touch or during sex.
CommentHi. I am looking for a women named Debbie who posted on a message board in 2001. Her email was Kiki5000 and was not complete. Debbie if you are out there I'd like to know how you are. Our stories are similiar. Jen
CommentWanted to let you know that my vulvar pain has been 85% cured, now that I've been treated by Dr. Monica Peacocke for 6 months. She prescribed Vitamin D to treat the adverse effects of Accutane. I was D deficient upon beginning my four month course of Accutane. Since Accutane is highly concentrated Vitamin A, it effects Vitamin D levels. In December I developed such pain in my labia/vagina that I couldn't walk. My longtime physician didn't recognize these symptoms of Accutane, but referred me to Dr. Peacocke, who had seen them before. I am now pursuing the pharmaceutical company that manufactured the Accutane in order to be reimbursed for my medical expenses. Anyone ever hear of Accutane causing blisters/skin falling off in the genital membranes? Anyone have any research on this? Thanks for reading my story.
CommentHas anyone had this as a child or adolescent and found success with anything?
CommentI forgot to mention in my email in July that my gastroenterologist(sp?)diagonosed me w/ motilit7y problem with simple xray test. Basically my intestines do not work on their own. The xray test consists of swallowing a small capsule w/ twenty rings in it. /After 5 days they do an xray of the abdomen. After 5 days 19 of the 20 rings were still there. My guess is that the fibro causes the lack of contractions causing IBS which translates to a serious motility problem. I take a dose of MIrilax- which works well if I don't overeat- every other day. It's an rx laxative. If it does not continue to work in future I may need surgery bUt I hope that does not happen. My point is that anyone w/ severe constipation - or the opposite- could have the intestines pressing on nerves, etc in a bad way. I would encourage anyone w/ the above problem to get the test done. It may help the vulvar problems ( I hope ) and at the least will rule out a condition that could be serious( if you get impactions).
CommentHi everyone, I finally went and saw another Dr a few days ago and she did a biopsy on me. We will know the results in a few days. She did however notice that I had a huge uterine prolapse, uterus,bladder and cervix had fallen and it was putting pressure on my vagina making my veins bulge from all of the pressure. Have any of you been checked for prolapse? This can cause alot of vulva symptoms and alot of women have prolapse without even knowing it. The Dr wants to do a hysterctomy on me but I'm kinda weighing out my options. I did find this website that some of you might be interested in. It helps with Vulvar Varicosities, prolapse of any kind, pregnancy, backache. I haven't ordered it yet but me and my husband talked it over and I'm thinking about getting one. It's cheaper then me having surgery and safer too. Here is the website if any of you want to check it out. I'm hoping it sves me money in the long run. I'm tired of paying so much for Dr visits and still dealing with all of this. It's called the Fembrace and it's suppose to help with all of the pain I'm dealing with. I will let you know if it works or not:)))))) http://www.fembrace.com/index.html Hugs to all Allison
CommentHi everyone, I finally went and saw another Dr a few days ago and she did a biopsy on me. We will know the results in a few days. She did however notice that I had a huge uterine prolapse, uterus,bladder and cervix had fallen and it was putting pressure on my vagina making my veins bulge from all of the pressure. Have any of you been checked for prolapse? This can cause alot of vulva symptoms and alot of women have prolapse without even knowing it. The Dr wants to do a hysterctomy on me but I'm kinda weighing out my options. I did find this website that some of you might be interested in. It helps with Vulvar Varicosities, prolapse of any kind, pregnancy, backache. I haven't ordered it yet but me and my husband talked it over and I'm thinking about getting one. It's cheaper then me having surgery and safer too. Here is the website if any of you want to check it out. I'm hoping it sves me money in the long run. I'm tired of paying so much for Dr visits and still dealing with all of this. It's called the Fembrace and it's suppose to help with all of the pain I'm dealing with. I will let you know if it works or not:)))))) http://www.fembrace.com/index.html Hugs to all Allison
CommentAllison- Have you discussed the option of a pessary with your gyn? A pessary is a cost effective alternative to pelvic surgery-- it is a little cone that is placed inside of the vagina to hold the uterus back into place. I can't help but wonder if a pessary might be more effective than the brace that you were referring to, if the prolapse really is that significant? Just something to ask about... Also, if I were to have surgery, I would go with a urogynecologist-- urologists who specialize in female pelvic surgeries. That's about all that they do and they are up to date on the latest techniques. Good luck.
CommentChristine, could you please tell me more about the vitamin d treatment? i was on accutane too but this problem started before it. My vulvar/urinary pain was a thousand times worse while I was on the accutane, though. If you could tell me anything about your symptoms or if you had them before the accutane I would really appreciate it. thanks
CommentTo Allison and All: Please be very careful to self medicate with Vitamin D, here is why. Dietary overdose of vitamin D results in relatively successful shutdown of 1-hydroxylation, but 25OH D builds up to such high levels that it begins to overwhelm and turn on 1,25 OH D receptors around the body without being further hydroxylated. Ingestion of the toxic calcinogenic plants causes even more severe toxicity because the active compound is actually fully active 1,25 OH D3 form. That's right - the "animal" form. In plants. Wierd, eh? Recommendations range from 2.5 micrograms (100IU) per day for adult Canadians to 10 micrograms per day for Canadian infants (400 IU). USRDA is 5 micrograms per day. 2000 IU daily poisons children, and especially sensitive kids have been intoxicated with less than half of that. The principal direct toxic effects of vitamin D are excessive absorption of calcium from the intestine and resorption of calcium from bone. This results in deposition of calcium and phosphorus in soft tissues all over the body, with particular damage to the heart, blood vessels and kidneys. This a fairly reliable method for inducing high blood pressure in model animals (such as dogs). This is presumably renal hypertension caused by calcification of the renal arteries. Extreme toxicities caused by the calcinogenic plants results in calcium deposition in and damage to lungs, tendons, ligaments with attendent lameness. The above was copied from a site on the subject of Vitamin D Toxicity. Please be careful.
Commentthis is probably such a stupid question that I'm embaressed to ask it. But does drinking alcohol have any effect on combatting infection? I spent four months in Dublin studying and my firends and I went out like four nights a week. While there I drank a LOT of a specific type of alcohol (it's alcoholic Cider like Strongbow, Woodchuck, etc). ANd while I was there I never felt better. The pain wasn't gone but it was better than it has ever been in the last eleven years and I just don't know why. If anyone has any thoughts on this or knows if ingesting alcohol helps with combating infection or yeast or something like that please let me know. thank you, and i hope everyone's doing well.
CommentTo Allison: Like the saying goes" there are no stupid questions, just stupid answers". I hope my answer is not a stupid one. Drinking alcohol tends to dull the senses so there is the possibility that you were numbed a bit. Since your body has to process the alcohol, your stomach, liver and kidneys all are under a strain to handle it and since your body is dealing with the alcohol I believe your immune system is weakened as a result. I'm not making judgements here just passing along what I believe to be correct information. Maybe one drink a day is good for the health, maybe it encourages yeast? We are still playing guess work with so much of this.
CommentHello Frank. I just wanted to ask you if you think it is possible that your wife my have low oxygen levels down at the 6 oclock area? I wonder if that is why she tears a lot. I know that whenever their is a deprived area inside you that is not recieving enough oxygen, then your cells can die and that can cause all kinds of problems. I have always read your posts and that is soo weird how no one has any answers to why your wife always stay dry and tear in that one area.. I mean, unless she is using some type of irritated soaps, but I don't think she is. I just hope you guys find some answeres one day. I know that with me, I CAN NOT wear ANY pantyliners or maxie pads when I'm on my period. NOT EVEN the soft pads because it feels like my vulva cannot breathe if something is there, sufficating it and it hurts. But I found that out a few years ago and I've just been wearing tampons since then. Well again, I hope your wife find answers soon.
CommentTo Lynn: Nice to hear from you and thanks for the interest. Lynn, if you are talking about oxygen as in blood flow then I don't think that's a problem or else she would have problems with dead skin and such. If you are talking about just plain old air getting to that area I don't see a how that one small six o'clock spot would be so different than the rest of the vulva as far as thinning out and tearing. I tried years ago to ask a female skin doctor's receptionist if the doctor worked with vulvodynia patients and never heard back from her. According to the endocrinologist who saw my wife a few years back her estrogen levels in her blood and at the are of her vulva tissue were within normal range.She has seen at least six different gyn's and not one had any idea why the skin thinned out and was so frail. Lynn, I wish to someday get an answer I miss the passionate lovemaking and I hate being the cause of damage and pain rather than pleasure. Someday, maybe someday. Take care.
CommentTo Lynn post date 6/62006: Lynn, how did you find the "virusologist"? I have more questions for you. Could you email me at your convenience. I would appreciate talking with you. Thanks, Jen
CommentYes, i know that drinking a lot of alcohol is unhealthy and obviously I am not doing it to dull the pain. I thought I tried to make it clear that I drank a lot because I am 20 years old and trying to have a semblance of a normal life by going out with my friends. I just noticed a byproduct was that I didn't have nearly as much pain during the four months that I was in Ireland.
CommentTo Allison: I'm going through some tough times of my own at home with ill parents on both my and my wife's side of the family, so if I missed something you said please don't be upset with me. Of course you are entitled to enjoy yourself and your gift of youth while fighting this miserable illness. I did some research using the internet on hard ciders and came across this information. "True apple cider -- made only with apple juice and perhaps a wine or beer yeast -- is a sophisticated art. It requires varieties of apples that aren't widely available: so-called "bittersweets," "sharps" and "bittersharps." These are apples low in sweetness and high in tannin that add a satisfying bite to the cider." Allison, what I found interesting was the word "tannin". It refers to an astringent. Could this be the ingredient in the cider you drank that helped relieve some of your symptoms? I was thinking in general terms when I wrote about alcohol dulling pain but I now agree that there is much more to the cider than the alcohol. I wonder if any other vulvodynia suffer with similar symptoms would find relief by drinking the cider? One thing to be aware of would be the ingredients. Different brewerys use there own methods and might not include what worked for you. Does any of this make sense? Hope it's of more help than my previous post and I'm sorry if I offended you in any way.
CommentIf the cider alcohol stuff is anything like apple cider vinegar then look up some information about the benefits of apple cider vinegar. But the only one with any benefits has to say on the bottle "With the mother" on it. You can find it at health food stores. People use it for yeast as well as many other ailments.
CommentHere's some information on apple cider vinegar, I've used it years ago and there are two things that make it different from the alcohol containing cider. First of all you only use a tablespoon or so of the vinegar and secondly I don't think it's made from the same apples so it might not contain the tannin which could be the ingredient which was helpful. Make sense? Substances in apple cider vinegar Scientists have measured ninety different substances in apple cider vinegar such as thirteen types of carbolic acids, four aldehydes, twenty ketones, eighteen types of alcohols, eight ethyl acetates etc. It also contains important minerals, trace elements and vitamins (as listed underneath) as well acetic acid, propionic acid, lactic acid, enzymes, amino acids as well as roughage in the form of potash and apple pectin. For a full analytical list ingredients contained in apples, please click here. Minerals and trace elements Potassium, Calcium, Magnesium, Phosphorous, Chlorine, Sodium, Sulfur, Copper, Iron, Silicon, Fluorine. Vitamins Vitamin C, Vitamin E, Vitamin A, Vitamin B1, Vitamin B2, Vitamin B6, Provitamin beta-carotene, Vitamin P. Useful in Well functioning metabolism; Reducing cholesterol (the dangerous LD
CommentThanks so much for writing back Frank. And I truly didn't mean to sound offended, its just that earlier that day I told the same thing to my doctor and she said that it probably just relaxed me more and all I need to do was relax! I guess I'm just so sick of hearing this, you know? But thank you so much for the research you did. Actually, I found it really interesting whta you said about tannins. Do you know anything about them? Because I looked them up and it said they inhibit the growh of both bacteria and fungus. Maybe there is something there? I'm not sure, but I ordered something called Tanalbit which is tannin in pill form used by many who suffer from Fibromyalgia (which I have never had--vulvar/urinary pain is the only symptoms I've ever had so I find it hard to believe I have a yeast overgrowth). But if you know anything else about tannins I'd appreciate it. thanks so much.
CommentTo Allison: I've had my own frustrating moments with doctors concerning my health and of course my wife's. I'm going to paste some information on tannins in a moment but I want to mention a couple of things first. When I was a kid my father had a tooth extracted and he ended up having a lot of bleeding at the site of the extraction. This happenened over the weekend and by phone his dentist suggested he place a tea bag where he was bleeding and apply a little pressure. I think the tannic acid is what helped stop the bleeding. I'm not sure if what helped you was the antibacterial thing you mentioned or the astringent action of the tannins. I wish I could give a better educated guess but if the product you try has the same helpful effect as the cider that's saying a lot. So if things go well you can say to your doctor, "okay maybe the alcohol soothed my pain a bit but here is what I learned through research on my own". Last year my wife saw a new gyn and this guy was supposed to be top notch staying current with the latest information on women's health problems. He examined my wife and had her buy a couple hundred dollars worth of his own supplements to reduce inflamation and strengthen her body. He also had her on a diet which excluded typical allergens such a s corn, wheat and milk. None of this routine helped as expected. Recently we got a postcard that he opened a new office and she should make an appiontment, they even had a internet site with all sorts of information. I went to the site and when I did a search on vulvodynia it came back with nothing. That's how current this cutting edge doctor is. I emailed his office that I felt meaningful research was necessary to help women suffering from vulvodynia and I made a few other comments, nothing rude. A lady from his office called yesterday and asked if my wife and I would like to make an appointment with the doctor.I told her how useless the last visit was and repeated my thoughts on real research. She has not called back. Okay, here is the technical stuff on tannins. Tannins are astringent, bitter-tasting plant polyphenols that bind and precipitate proteins. The term tannin refers to the source of tannins used in tanning animal hides into leather; however, the term is applied to any large polyphenolic compound containing sufficient hydroxyls and other suitable groups (such as carboxyls) to form strong complexes with proteins and other macromolecules. Tannins have molecular weights ranging from 500 to over 20,000. Tannins are usually divided into hydrolyzable tannins and condensed tannins (proanthocyanidins). At the center of a hydrolyzable tannin molecule, there is a polyol carbohydrate (usually D-glucose). The hydroxyl groups of the carbohydrate are partially or totally esterified with phenolic groups such as gallic acid (in gallotannins) or ellagic acid (in ellagitannins). Hydrolyzable tannins are hydrolyzed by weak acids or weak bases to produce carbohydrate and phenolic acids. Condensed tannins, also known as proanthocyanidins, are polymers of 2 to 50 (or more) flavonoid units that are joined by carbon-carbon bonds, which are not susceptible to being cleaved by hydrolysis. While hydrolyzable tannins and most condensed tannins are water soluble, some very large condensed tannins are insoluble. Tannins may be employed medicinally in antidiarrheal, hemostatic, and antihemorrhoidal compounds. Also, they produce different colors with ferric chloride (either blue, blue black, or green to greenish black) according to the type of tannin. Hope some of this is helpful. Good luck with the tannin supplement and please post your results. Sure would be nice if you discovered something that helps yourself and others. I'm still hoping one day to find out why my wife has that thinning skin and recurrent tear. All these mystery symptoms and the doctors play guesswork. Good luck.
CommentTO LYNN- Hye ive been reading for awhile and I wanted to talk to you more about how u initially got this,,, can u email me at the above address...I would love to chat with you. Sarah
CommentThis web site gives some hope. I need to educate myself if I want any relieft from this life alternating illness.
CommentAllison and Frank. I've actually had very similiar experiences with travelling, drinking a lot of alcohol, and feeling much much better. I use to think it was the acohol, but then I went to Thailand this year, barely drank anything, and still felt a lot better. I think it's likely just getting away from the stress, not being able to deal with your problem or think about it, and just having a good time. In my case the vulvodynia actually went away while partying in Cuba one summer years ago - and I was drinking only rum.
CommentThanks Jen and Frank for responding. While I definitely agree that not being able to concentrate on or think about the pain reduces it, I've also been reading up on tannins, and actually been widely known for its antibacterial purposes. Interestingly, it's the ingredient in cranberry juice that helps with urinary tract infections. I'm going to my urologist tomorrow so I'm going to ask him.
CommentTo Allison: I knew cranberry juice made the walls of the bladder slippery so the e coli bacteria could not adhere and spread but you just taught me something about what's in the juice, here is a copy explaining what you mentioned. Amy B. Howell and others from Rutgers University conducted experiments to understand how cranberry juice lowers the numbers of bladder infections. The study was published as a letter in the New England Journal of Medicine (Oct. 8, 1998). They found that cranberry juice's ability to prevent bladder infections had nothing to do with increasing the acid levels in the bladder. Instead they demonstrated that a compound present in the juice called tannin was able to prevent the bacteria (most commonly Escherichia coli or E. coli) from attaching to human cells that line the inside surface of the urinary tract (urinary tract= bladder, urethra (tube from the bladder to the outside), ureters (tube from the bladder to the kidneys). If the tannins were present, the bacteria could not bind to those human cells and as a result the bacteria could be washed out of the bladder during the next urination. The researchers also found out that these tannins are only present in cranberry juice and in blueberries. Tannins were NOT present in many other foods including lemons, oranges, apples, bananas, and carrots. So if you are bothered by this infection, a glass of cranberry juice a day may well keep the bladder infection away. Please remember, cranberry juice should not be used with some medications. Check with your physician first. KNOWLEDGE is POWER. For more power go to: More information on preventing Urinary tract infections Take Care and Think Microbiologically! For more articles on Microbiology go to Suite 101: Microbiology
CommentThanks Frank. I read something similar, and then learned that tannins aren't naturally in apples but they add a ton of them to cider to give it that zing/bitter taste. They also add it to wine. I'll let you know more when I find out.
CommentWhile discussing E coli, I have had vulvar pain for about 1.5 years, horrible, burning, irritation pain 24/7. 6 Oclock irritation and pain, all which occured 3 days after unprotected sex. Std tests came back negative. I have had no luck with anything I have tried.... I recently had a vaginosis profile done, and it showed 4+ e coli overgrowth in my vagina,,,,, way higher than the normal flora should be(im very clean and wipe properly ) However I am being treated, I was wondering if anyone had any light to shed on this matter, could this be the problem all this time? im really at the end of my rope... Sarah
CommentSarah.......Here's another Sara who has been suffering a relapse for a yr. now. I'm off to the colo-rectal guy on Mon. because my symptoms are really bad rectally as well as vaginally. I'll see what he has to say about the E-coli. Are your symptoms confined only to the vagina?
Commentgood site
CommentHi. I'm a male posting here, so if you're offended that a guy has the need to post on this site, please piss off. I've been married for about 3 years, our anniversary is this weekend.... I love my wife tremendously, ...but ... I just don't know who to turn to. I haven't told any of my guy friend's about my wife's condition, I just don't know how it would help anything. My wife hasn't really told anybody about her condition other than her coworkers, and her sisters... she claims that I'm being unsupportive, but I beg to differ. It's just that I DO NOT TRUST all these doctors. We've been dealing with this for a long time now, about 4-5 years, and IT NEVER GETS BETTER. The first few doctors just thought she had a yeast infection, treated her for that, and it actually made it worse. There are so many freakin' quaks in the healthcare industry that just really don't know what the hell they are talking about, I just really have a hard time trying to 'believe' in the latest doctor's advice, because I never see improvement. Because of her vestibulitus, she now seems to hate sex, and rejects me often, and never makes advances. It feels shitty. I'm sure it also feels shitty to have her genitals hurt, but I assure you that if my genitals hurt, I would at the very least attempt to keep my wife satisfied in other ways, using my hands, mouth, whatever. The point is, she just has no drive anymore, and I think that's selfish. When two people are married, SEX IS a portion of the relationship, without intimacy, you're just friends. And frankly, this is severely hurting our marriage. I know she loves me, and I know she still OCCASIONALLY (like once a month, if that) still wants me, but most of the time she's just very, very difficult to get into any type of sexual encounter. Any sexual encounte= reminds her of pain, which deters her from ever being sexual. I hate this. I am a very sexual person. She used to be. And now that she has this stupid fucking disease that nobody knows about, is aware of, and probably gets zero funding (but hey, old guys who cant get their dicks hard, we have pills for that), she is almost never sexual, and if she is sexual, I almost feel like it's out of pity that we do anything. I hate feeling guilty about my sexuality, I'm only 25, and sex is important to me! I want to work this out, but I'm sick of all these doctors NOT FIXING THE PROBLEM. She just recently started physical therapy, so taht should help, and I've also read about these dialators on this site... I think that would be a good idea, once she's relaxed, since she is a very tiny girl. I guess I'm not sure why I'm posting here, other than our relationship is becoming more and more distant, and I don't know what to do. If I know that any advance of intamacy just means I'm either going to feel rejected, or like she's not really into it and just doing something out of pity, I feel less inclined to be romantic. And if you're not being romantic, you end up just being friends. I'm sick of this. I already have lots of friends, I want my wife back! What I really don't get is during the first few years of knowing each other, we had sex all the time! And now... it's almost as if I have to feel guilty about any sexual feelings.... I wasn't raised catholic, but I definitely feel repressed. I feel like I can't even talk to her about this in person, but I will let her read this post after I'm done. I guess I'm not sure where I'm going with this, .... maybe.... maybe, how the hell can you undo the negative conotations with sexual encounters? Honestly, straight up physical pentetration I could do without the rest of my whole life as long as we had a healthy, ACTIVE sex life instead! But this repressed sexuality/feeling guilty/trying to be supportive about every god damn thing that the latest doctor says but won't work anyway/constantly getting shot down thing is just horrible. The less intimacy we have, the farther apart I feel from her... the farther apart we feel from each other, the less intimate we get. It's a cycle that has to stop, or we'll live hte rest of our lives in unhappiness. Help. - Rob
CommentHi Rob... thank you for your brave post. I can say at first I thought I would be offended by it. But by the end I am not. I have had quite a similar situation as your wife... and my husband (I'm sure) can relate to ALL of what you just wrote. We've been battling this for a few years now and are hopefully coming to an end. He's not been so happy with the fact that sex is extremely rare or nonexistant... I've recently had surgery to remove the glands around the enterance to the vagina. That for me, has taken most of the sensative areas away. I now fight the battle of breaking down the wall of fear I've put up. I can see where you would be frustrated by all of this... a man's drive is extremely different from a woman... and when a woman is physically in pain, that drive becomes non-existant. I hope you'll be patient with her... and her with you. I know that my husband and I have one heck of a time communicating, as we are both "silent communicators". Neither one of us says what's on our mind a lot of the time. Though we're working on that. I don't know exactly where I'm going with this... except to say, you're not alone in this. There are as many men hurting as there are women hurting with vulvodynia, etc... Please do talk with your wife about you... there's no doubt that she's still in love with you. But with this, it shuts down all sense of need for anything physical. My fear was always if I kissed him or touched him... that would lead to sex.... so best not to do that... and it just grew bigger and bigger over the years. Now, it's SO hard to reverse it. I know it's possible... your wife will need your love and your patience. But tell her how you feel. It took my husband a long time and a sex therapist to let me know. There is hope Rob. Nothing will happen overnight, but for anything to happen - she will need you. FRANK?(a man that posts here) Perhaps you, Frank, could shed some light for Rob. Good luck, Heidi
CommentThanks Heidi. I have a few other questions. I've been reading a lot that imbalanced PH in the vagina can cause infections, allow things to grow, etc etc etc etc. That said, I'm a very mechanical guy.... an engineer's mind so to speak. So why can't you just check the PH, and add more acid/base with some sort of customized duesche to rebalance it? From my scientific mind, this makes perfect sense. The acidity is off, it doesn't have enough acid, just mix up a solution with a bit more acidic properities and toss it up there. Why wouldn't this work? Once the PH is balanced, then the infections/inflammations should begin to go away. Then do the pelvic floor muscle physical therapy, and use a dialator to practice stretching things out. I'm going to college for something unrelated to automobiles, but I've always worked on them. I just don't see how a woman's vulva is more complicated than a twin turbocharged v-12 with a magnesium block, and it's just frustrating that today's doctors don't have a clue about this whole ordeal. Peace, - Rob
CommentHi everyone. I just have yet another question. I was just wondering, if I am able to use a tampon without pain is i likely that sex might not be painful? I have never had sex, as I have had this since I was ten, adn have just never been in a serious relationship. Inserting tampons is painless, as is it when the gynecologist examines me internally. What do you guys think? I mean, i know i will never know until I actually do have sex but I guess it's easier to keep my spirits up when I think I have a sexual future. If anyone can shed any light on it, I'd appreciate it. And to Frank~I saw my urologist today and for the first time in ten years a doctor saw something unusual. He said the area around my urethra was not a good color, white when it should pink, adn that when I urinated I wasn't emptying my entire bladder (which could be a reflex to the anticipation of pain), anyway, he found it interesting that when I was ingesting cider (tannins) that I felt better, adn is looking into it. He put me on an antibiotic b/c he thought that maybe I have an undetected infection/parasite. I know everyone here warns against it, but I have actually never in my life (21 years) been on an antibiotic, so I think it is worth a try. He also wants to run more tests, so I'll keep you posted. Thanks so much for your information about the tannins, I think i might be onto something
CommentTo Rob: I'll try to be as brief as possible and I'll probably end up offending some people but here goes. Chances are not all the doctors your wife has seen are idiots and this illness with all it's symptoms is an unknown. Let me put this in more personal terms, at fifty three years of age I still want to and occassionally have sex twice a day without the use of drugs. I'm glad Heidi recognizes what so many women deny, men and women do have different sex drives. Rob, don't think you can do without vaginal sex and things will be fine. Don't think you can cure your wife's illness or correct the ph of her vagina. Right now I would like you to step back from your situation and see it as I do. I'm a father of two girls and if one of my daughters was young and married only three years and suffering with this illness, this is the advice I would give her and her husband. Please understand that I would not say this to a married couple that has been together longer or has children. My first concern would be for the person with the illness, you can't really concentrate on treatment or deal with physical pain if you are dealing with a failing relationship and emotional guilt. Secondly, I would be concerned for the young man and how he is coping with this illness. Does he keep pushing or hoping for sex to get better? Does he stop trying, or maybe start cheating? Rob, there is nothing in my opinion more complex than the human body and as much as I hope for the best I also accept the worst. If your wife was my daughter I would advise her and you to project a bit into the future and decide if you want to stay together and possibly destroy any love you have or maybe separate or divorce. I know this sounds cold or cruel but if you expect your wife to be a sexual being while she is experiencing pain of a sexual nature consider the implications? I've often thought of taking drugs to kill my sex drive, but then I would not be who I am and what would I become? You are a young man with a strong , healthy sex drive can you deny it and if so for how long and at what price? You really think your marriage would work if your wife was to masturbate you, perform oral sex on you, or allow you to have anal sex with her on a regular basis? While she is dealing with vaginal pain? If you decide to divorce don't make her the guilty one and if you decide to stay together take stock of your behavior. Listen to your words and tone when you speak to her, don't punish her for something out of her control. I will always be here to either listen and keep my mouth shut or if you want, to offer advice, but I am truthful. Hope for the miracle but prepare for the usual. My best to you and your wife.
CommentTo Allison: If you are stil reading my posts after the last one I'm glad you got some useful feedback from your doctor. I know there are tests they can do to detemine if the bladder is emptying properly. You might be on the path of better treatment. I find it amazing that in twenty one years you have never been given antibiotics. My daughters must have had antibiotics two or three times a year since infancy with ear infections, strep throat and other assorted childhood infections. Sometimes there isn't much choice if you want to knock out a stubborn infection. If you and your doctor decide to use drugs then consider eating yogurt or taking a good probiotic supplement to avoid the chances of a yeast infection. My only advice on the sex thing is don't complicate yourself with things down the road. Deal with the here and now, the other stuff will all work itself out. I know I'm in for it because of my last post but I had give my honest opinion.
CommentI'm so glad to read male points of view! I also thought I would be offended by Rob's post, but I wasn't. And Frank, thanks for your honesty, too (I've never found you offensive, even when you think you are). The relationship aspect of this condition is the hardest part to deal with, for me. Just the constant thoughts of not feeling good about myself, feeling like I'm a disappointment, etc. I don't totally know what my boyfriend thinks about what I've been going through. We are 'silent communicators', as Heidi put it. We also don't live together, so he's not too entrenched in all of my treatments (PT, Capsaicin, etc). He has been very supportive, never tries to coerce me, or gets upset, and is always respectful - but I imagine it must be hard on him, too. Although we haven't been able to have actual vaginal sex for awhile (I've never had sex without pain), we've still been intimate. Honestly, sometimes I'm doing it because I know he needs some kind of sex, and sometimes I do it because I enjoy it. I don't expect him to be in this relationship without some type of sexual contact. Also, I still need to feel sexual and beautiful and desired - even with my pain. I need him to still want me. Rob, if your wife's muscles are tight, and if she tends to tense up at the thought of sex, a dilator would be good for her - she should be able to get one from her PT. I started using one, and it's helped me to kind of get used to the idea of having sex again, even though I can't actually do it now. Also, in response to the PH thing - if only it were that easy! The problem is, sometimes when these conditions go untreated and end up resulting in nerve and muscle damage secondary to whatever first triggered it. One last thing while I'm posting - anyone have any feedback on Capsaicin? I started it about 2 weeks ago. I've definitely felt much less pain during the day, but I don't know if that's in response to the Lidocaine I have to apply prior to using it. Any thoughts?
CommentI have suffered with vulvadynia for eight years. I am 48 years old and I have tried just about everything searching for an answer. I have been pain free for almost 3 years. My progress was slow, but little by little I have recovered, Foods are triggers for me, coffee, tea, lots of fruits and vegetables, cereals... they all cause burning. I take 37.5 mgs Effexor twice daily, also hormone replacement therapy, Lorazepam 1mg when needed. The Lorazepam has been a life saver for me. It calms the nerve endings down and just really helps. I drink lots of purified water and avoid too many acidic foods. I hope this helps someone. I have my life back!!
CommentI have suffered with vulvadynia for eight years. I am 48 years old and I have tried just about everything searching for an answer. I have been pain free for almost 3 years. My progress was slow, but little by little I have recovered, Foods are triggers for me, coffee, tea, lots of fruits and vegetables, cereals... they all cause burning. I take 37.5 mgs Effexor twice daily, also hormone replacement therapy, Lorazepam 1mg when needed. The Lorazepam has been a life saver for me. It calms the nerve endings down and just really helps. I drink lots of purified water and avoid too many acidic foods. I hope this helps someone. I have my life back!!
CommentI have suffered from vestibulitis for several years now, and am unable to have intercourse. I have, however, managed to get pregnant with the use of a syringe and a catheter (hardly no pain, got pregnant at once, can absolutely be reccomended for women in the same position). I have, however, some worries about the whole birth process, and hope that some that have already gone through this, might help me out. I have always wanted to give birth in water, and i figured that the pain by giving birth would be so strong that i wouldn't even notice the vestibulitis. My doctor, however, does not want me to give birth in an ABC clinic, as he says that with my pain history, it is crucial to have access to epidural. I really do not want to use chemical pain relievers, i want to use warm water and accupuncture. Do anyone have any experience with giving birth while having vestibulitis / vulvodynia? It would also be of great help if somebody know about any sites on the internet treating this subject. Best regards, A
CommentHello. To Rob, I just want you know that on behalf of you wife and other women dealing with vulvodynia pain, I'm sorry that you have to go through this. I know that it is very difficult on a man to get rejected and denied sex from the one that claims she loves you. But believe me, the pain that we feel when we do feel pain, makes up wants to kill ourselves. It is no joke! But anyhow, I justed wanted to tell you that even though most Drs out there don't know anything about this condition, Dr. glazier knows. When you log onto this website, instead of clicking on the guestbook, look at the top left corner and click on Frequently Asked Questions. When you do that, you will see the lists of things that causes vulvodynia/vestibulitis. You can have your wife go to the Dr and get tested for those things he listed, hormonal imbalance, food allergies, ph level embalance, high food oxolates, yeast.....I mean there is a long list. Any number of things could be causing her pain. For most of us, it took us probably an average of 1 year to find out about our pain, the causes, what we must do to feel better. It's all research! Drs don't know everthing, your wife has to be her own Dr at this point. And another thing is that she may be better going to a naturalpathic/homeopathic Dr, to treat her condition. I mean I can go on and on and on, but I'm sure you guys don't want to read a large posts. Just check out the FAQs and then you and your wife can be on the road to help finding our her causes and hopefully find a cure/relief. I would LOVE to talk to you and your wife on the phone, because I have SO MUCH information I would like to share with you. But you guys are okay with that, let me know and we can exchange numbers. For AST, I had a C- Section because I didn't want to cause any damage to my Vulva. It was successful. But before, durring and after the pregnancy, I was having my painfree days. As long as I maintain the right diet, I have painfree days. You might want to consider having an elective c section to avoid any vulva pain getting worse.
CommentTo Frank & Rob: Frank: I have never been offended by any of your other posts on this site & I really do enjoy hearing your point of view, but I do have to say I do not agree with your latest one. Everyone is entitled to their own opinion, however I wanted to state mine for anyone else reading this that is in a serious relationship & feeling hopeless & unsure. I am 25 years old & my fiance & I have been together for 5 years now. I have been suffering with vulvodynia for almost 3 years now. Before I developed this horrible condition we had a healthy, normal sex life. Since the vulvodynia we have probably only had actual intercourse a few times. Each time we tried it hurt so much I would cry. My fiance was the one who said we should stop trying for now until I begin to feel better, because he can not stand to see me in pain. I have felt guilty about this every day, feeling like a failure as a girlfriend that I am not able to please my boyfriend in ways that I should be able to. However my fiance assures me that sex is only a small part of our relationship. Not only are we each others best friends, but we also offer each other intimacy in many other ways besides sex. I feel that if sex was the most important thing in a relationship he would not have chosen to propose to me & spend the rest of his life with me(for better or for worse)knowing that there is a chance I may never get better. I am not knocking you Frank for your opinion or you Rob for how you are feeling. All I am trying to say is that I know that sex is an important part in a relationship, but if for some reason this has to be taken out of a relationship(because it is out of your control) it should not mean that the relationship has to end. It should only mean that you should try even harder to focus & work on the other parts of the relationship that are in your control. Especially if you really care about & love this person. I know everyone is different & every relationship is different. I feel so lucky to have such a supportive person in my life & I just wanted to share my story to let other girls know that there is hope. Who knows what the future will bring, but there is always hope. Anyways good luck to you all & I wish you the best!
CommentTo Sarah: I'm so glad you could disagree with me without getting nasty. I've posted on this board several times that many of the divorced couples we know did not divorce or separate due to lack of sex as far as we know. I've also written you can have beauty, sexuality, wealth and any other persoanl trait or social skill and not be able to keep your relationship strong if your mate decides to look elsewhere. So , yes I totally agree that sex does not make or save a marriage. I do think at least for myself to not have sex in my marriage would be something I might not be able to deal with. Maybe my love is not strong enough, or my personality not deep enough to work it out. Rob, may be a very different guy as is your wonderful mate. I think if sex was to end as the result of a horrific accident or severe illness the reality would be more obvious than it is with vulvodynia. Personal pain is an invisible enemy, I know that with my abdominal pain and pain from herniated discs in my neck and back I may appear to be strong and muscular to others but inside I'm dying. Even my wife lacks compassion with how bad I feel at times because she herself is not suffering my pain. When I look at my wife of over twenty years I see her beautiful face and sensual body and I think sex and love making. I think of her having orgasms and I too experiencing a feast of sexual pleasure, I'm not constantly thinking of the pain she will be in and the guilt I will be dealing with afterwards. The advice I gave to Rob was not meant to be cruel, I thought to myself "What would I say to my daughter and her husband if they were going through this problem". I still think not everyone can handle a loving relationship without sex and certainly not at such a young age with such strong sexual feelings. You and your mate are proof that there are exceptions and hopefully many exceptions to my general statement. Many marraiges do fine without sex, the couples still share feelings of love and caring and may be happier than many couples who have sex regularly then fight like dogs. I was and am a very sexual man, sex with my wife was often and very passionate. I've suffered the loss of a child and live with all sorts of physical and emotional pain, I would hate to lose something that gives me such stimulation, pleasure and gratification before I am much older. I still think that if couples who deal with vulvodynia decide to stay together they should agree to some rules or maybe different vows to live by. I think they need to recognize feelings of guilt and blame and do their best to either refuse them a place in their relationship or admit they are doing more harm than good to eachother. Once again I applaud the women who live with this illness and the men who stay by their sides. Please do not demonize the men who seem to be unable or unwilling to do the same.
CommentI will be going on my 4th year with Vestibulitis this coming up September. I was married at the time the problem started, but was divorced a few years back. We had problems prior to the pain setting in so the VVS was not our reason for splitting. I have been to many gyns and none of them can help. I agree with Rob. Why is a womans vagina so darn complicated? I don't really believe that it's complication is the reason we don't have a cure, but the lack of feeling from the medical community. My guess would be that most of the leading scientists are male. Which would lead to the research and medications for erectile dysfunction. But the more women who get VV/VVS, the less men will need Viagara and the like LOL. It is unfortunate that we have pain for unknown reason. I also have FMS, so not only does my vulva hurt, but so does the rest of my body. Something as simple as semen can throw off a womans pH. I am not nearly as bad as I was when I first got VVS so I can have intercourse alot more than before and even though it is usually somewhat uncomfortable (sometimes its not painful at all), it is not so bad I can't stand it. And each and every time we are able, I will immediately insert a boric acid suppository. (To balance the pH) If I don't I am in pain (more than "normal") for a few days afterwards. I also don't think the question is keeping our vaginas balanced, but keeping the entire body balanced. If the body as a whole is balanced then the vagina will stay balanced. It is hard to stay on an alkaline diet. I have tried. I know if I would stick to what I know, I would probably be pain free, but a lifestyle change after 33 years is difficult and it's hard to change all habits not knowing for sure if it will help completely. I do know I wear pants daily and I have pretty much a normal life just lacking in the sex department. This doesnt have to ruin a womans life, and the stress of worrying about it can cause even more pain. I have a man in my life now that said exactly the same thing as Sarah's. Sex is only a small part of a relationship. He also says that there are other things we can do that end in the same result ;O) It is hard not being able to be as close as a man and woman can be, but even though it is hard on you men,. it is SOOOOOOOOO much harder on us because we tend to feel like it is our fault that our sex lives arent normal. And I dont think that as a man you should discuss your wifes condition with your friends. Maybe seek out professional help if you need someone to talk to and make sure to talk to your wife. It is possible to have a happy relationship without a normal sex life. I know I wouldnt leave my man if something happened to his penis. I feel badly for the girls that have had relationships that have ended and cant find someone who will be with them once they find out they are in pain. It makes me see how lucky I am to have such a wonderful man who si loving and understanding. He loves me the way I am, in pain or not and it helps that when I have a bad flare up that I can cry on him and he gives me his strength. And it helps that through all of it, he wants me to be his wife. We didnt ask for this and it takes a wonderful man to realize we need more in this life than some ol in out in out :o) Love is more important that sex and it actually draws you closer when you do get that day here or there that you can be intimate. It makes you realize how many people take intercourse for granted. You realize how amazing it is when you cant do it and then after such a long time you can, its like WOW. Feels like the first time. If something similar to the men, they would want us to be strong for them and love them and be faithful to them etc. and I feel that the men should be here for us to. Through better and worse, sickness and health.
CommentTo Candi: That was a very nice post and you touched on so many things such as semen and ph balance. I've been thinking about my posts since yesterday and it is so difficult to discuss vulvodynia without having the conversation go towards sex and how men and women are different and all that. I see marriages around me fail all the time and my wife and I have had some very difficult moments, none of which had to do with sex. You too are so very lucky to have a loving relationship with a man who does not put up with vulvodynia but rather loves you for all you are in spite of it. Things are like that for my wife and myself in some ways, I love her for all she is and all we have had together over the years not to mention all I hope we will have in the future. I just get so frustrated with the limitations of the illness and the failure to get answers. I don't know if it's worse to have been passionate lovers prior to vulvodynia or to fall in love and try to relate after having this illness? I am always cautious not to make my wife feel guilty and always encourage her to be honest with me and tell me how she is feeling, which I believe she does. She knows I'm a horny guy and understands some of the complications that make me the way I am. I agree that marriage should be for better or for worse and as much as I post how strongly I feel about lovemaking we have been through so much worse than vulvodynia. My wife's vulva pain is not a constant and we are lucky to be able to have sex more than many sufferers. For us the worse has been the loss of a child, struggles with my health problems and the normal "worse" that many couples face including family and financial woes. All things factored in sex is a small part of the bigger picture, but for some that small part is very important. We can't seem to impact meaningful research so we are stuck with hit and miss doctors, alternative medicine and our own trial and error. I just did not want to let Rob think this was going to be a quick fix or a fix at all. If the tables were turned and I was the one who could not have sex, would I want my wife to leave me? That's a great question for all men whose wives and mates get vulvodynia to ask themselves. Some men can't remain faithful during their wife's pregnancy with their own child! Getting back to that question, of course I would want my wife to stay with me but I can project what thoughts would go through my mind. Feelings of inadequacy, disappointment, thought of my wife being with another man, fear of trying and failing. Probably every negative thought and emotion you ladies deal with or have felt at some time. I think it would be much worse if my wife kept trying to fix me or worse made me feel guilty. Trust me I have thought of these things and think about them constantly. That is what motivated me to say the things I did to Rob. If he is going to stay married, I hope for his wife and him that he accepts the reality of this illness and always considers her feelings. If not then as I said if his wife was my daughter, I would rather see them apart. I'd rather be ill and alone as bad as that is, than sick and with someone who made me feel worse.
CommentHi, I know a while back, somone mentioned a doctor in Ridgewood, NJ that they used for vulvodynia. Can anyone give me the name again? Also, I have a problem I wanted to see if anyone else had. When I ovulate, the discharge has a foul odor. It went away after I took antibiotics, but 3 doctors later keep telling me that if it was anything, the ordor would be all month, not just for one week. It still does not seem right to me. I am 37 and have only had this odor for a little over a year. Any input would be appreciated. For the constant burning etc, I tried the grapefruit extract, like some suggested, but it just made my symptoms worse. Right now I am terribly sore, but since I tried so many things, I usually do not use any medications at all. Hopefully I can find a doctor that will actually do something to help me. Thanks again! Patti
CommentHi I read your posting in the guestbook. I am 24 and I was diagnosed with VVS in 2004 about 2 months after I was married. My doctor was very good and knew right away what it was and then I sat on a waiting list to see a specialist for 6 months. I did 16 weeks of physio and was just told that she can no longer help me that that certain treatment did not work. And now I have to wait three weeks to go back to my specialist. I just bought the survival guide online, and it mentions all sorts of treatments and I do not even know where to start. Its such a darn pain. I do not have any of those depressive issues. I have not had sex with my husband in over two years. We tried about three weeks ago, and I had tears pouring down my face with how much pain it was. My husband is very understanding and told me it was not worth it and we would wait some more until my doctor could find something else? What is this diet thing? If having many major food allergies does this make it worse? I am allergic to all nuts and all dairy products. I had trouble as a kid with urgency peeing. And I cut out all caffeine and that helped it did not even occur to me or my parents that something major was wrong. So now, I am a tad frustrated not depressed or anything because I have so many other great things in my life. But I do want it fixed I do want to be able to try and have children. And not with artificial insemination. But mostly I just want to have a healthy marriage. And maybe get rid of that awful itching, burning, dryness, and redness, and stabbing sensation pain. So if anyone can help either email me or answer the post I am going to start to read these things. Thanks Ariel adavidson21@yahoo.com
CommentHi all. I just found this web site tonight and found it extremely interesting as I have suffered with all of the painful symptoms of vestibulitis/vulvodynia since I can was 17 (nine years). I know many of you prefer the holistic approach, and acually I do too, but I'll go with whatever works and right now that happens to be a medicine called Topamax. Many medications in this psychotropic class have off-label usages, but since they have not been clinically studied many docs won't prescribe them unless you specifically ask. I was prescribed Topamax 2 years ago for its affects on migraines and as a (wonderful) side affect I noticed that all of the symptoms of the vulvodynia I suffered from disappered. Believe me when I say I tried all those other medications (neurontin, amitriptilyn, prozac, wellbutrin, st johns wort, lidocaine gel/cream, yeast infection meds). You name it. And then I just gave up. So if your doc suggests you try it, go ahead. It took a few months and a relatively moderate dosage, but it worked.
CommentHello Tara, that's great that Topamax worried for you. I'm just curious, do you get any side effects with this med? With neurotin I would feel really really drunk, did you get any of these dizzy/out of touch with reality feelings? Also, while we're on the issue, has anyone on this site tried Lyrica? If so, what was the outcome.
CommentDear Members, The second post on this guestbook is by a member named Joyce. She talks of Wendy Fellows and how she has given her hope. I logged on to the website and I cannot get the women's address to send her info or a check. What's up with that? Am I doing something wrong?
CommentSara- The only Wendy Fellows I could find was a Phd neuroscientist in Pennsylvania. There is another Wendy Featherstone PT 1655 Elmwood Ave , Rochester ny 14620 (585) 473 1290. email : wendymfpt@hotmail.com. Is that who you want? You know who----------
CommentI have been on paxil (amongst other drugs)for many years now. My doctor suggested I switch from paxil to prozac saying they are very similiar but prozac has less side effects.I have noticed a HUGS increase in my pain. Do you think it could be from switching from paxil to prozac or something else unrelated?
CommentHi. I read in one the guestbooks that someone was looking to start a support group in the Philadelphia area. I am in South Jersey and would be interested in participating in a group. Any other South Jersey/Philadelphia women interested? Or even talk via email? Jen
CommentDear sisters, I hope this information can help someone. I have recently been diagnosed with vulvodynia/vestibulities and have been down the path of medical treatment including steroid cream, antidepressants and so forth. None of these treatments were successful for me and only made matters worse. Last week I could not sit down, and one week later, have been relieved of pain completely. Please note, I am not a medical practitioner but hope the following tips/information can help you as it has done me. Good luck! - if you are on the pill - stop taking it NOW. - do not attempt to have intercourse. If you're partner leaves you because of this, you don't want him anyway. - the mucus membrane of your vagina is damaged and raw (for whatever reason - mine was a bad case of thrush). Start thinking of your vagina being as sensitive as your eyeball. - do not aggravate this sensitive tissue with chemicals, be it steroid cream or any other chemical substance for that matter (would you apply this stuff to your eye?) - In a small bottle with a dropper, I have made a mixture of extra virgin olive oil (which is a natural ipobrofen, anti infammatory) with a vitamin E tablet (broken and mixed in). Apply this topically, using the dropper, as often as you want to, especially after urinating. It will not upset the PH in your vagina and will give you relief as well as heal the delicate tissue. - Aloe Vera juice will keep your bowels well oiled and downstairs as well. - Do pelvic floor exercises whenever you think of it (just squeeze). It will tire the muscles and help you to relax. - I am taking Cod Liver oil capsules which contain vitamins A and D, both aid in the healing of mucus membrane tissue. I hope this information can help you. I have not yet attempted intercourse, but will definately be using the olive oil as a lubrication! Cheers.
CommentDear sisters, I hope this information can help someone. I have recently been diagnosed with vulvodynia/vestibulities and have been down the path of medical treatment including steroid cream, antidepressants and so forth. None of these treatments were successful for me and only made matters worse. Last week I could not sit down, and one week later, have been relieved of pain completely. Please note, I am not a medical practitioner but hope the following tips/information can help you as it has done me. Good luck! - if you are on the pill - stop taking it NOW. - do not attempt to have intercourse. If you're partner leaves you because of this, you don't want him anyway. - the mucus membrane of your vagina is damaged and raw (for whatever reason - mine was a bad case of thrush). Start thinking of your vagina being as sensitive as your eyeball. - do not aggravate this sensitive tissue with chemicals, be it steroid cream or any other chemical substance for that matter (would you apply this stuff to your eye?) - In a small bottle with a dropper, I have made a mixture of extra virgin olive oil (which is a natural ipobrofen, anti infammatory) with a vitamin E tablet (broken and mixed in). Apply this topically, using the dropper, as often as you want to, especially after urinating. It will not upset the PH in your vagina and will give you relief as well as heal the delicate tissue. - Aloe Vera juice will keep your bowels well oiled and downstairs as well. - Do pelvic floor exercises whenever you think of it (just squeeze). It will tire the muscles and help you to relax. - I am taking Cod Liver oil capsules which contain vitamins A and D, both aid in the healing of mucus membrane tissue. I hope this information can help you. I have not yet attempted intercourse, but will definately be using the olive oil as a lubrication! Cheers.
CommentI googled "low oxalate menus" and was sent to this site, not knowing why, until I started reading. (Apparently vulvodynia sufferers can be helped by keeping on a low oxalate diet?) I have chronic kidney stones and have been realizing I have to get really serious about eating a low oxalate diet. But its so counter-intuitive for someone who's been very conscientious about eating lots of fruits & vegetables, drinking tea, etc. Has anyone out there had any luck with finding, perhaps, a book of menu options? And someone to answer the myriad of questions I have - for example, since this list is not exhaustive, can any food not on the list be considered "low oxalate"? TIA for any help anyone might be able to give. (And blessings to all you poor lovely women suffering from vulvodynia! I'm so sorry, it sounds perfectly miserable!) Carol
CommentHi. is there anyone out there who had the onset of vvs with accutane or that it got worse with accutane? Did you find relief with anything? I was just wondering as my pain got worse with accutane and I didn't know if it had anything to do with glands. I know accutane works by drying out the sebaceous glands, is there any way to fix this? any help would be nice. thanks, hope you're all doing well.
Commenthi! I'm 25, married for 2 years in a relationshiop for 3. The first year was fine, then I was diagnosed with a series of different bacterial and yeast infections for almost a year. I had seen 6 different doctors and after all treatments I was still left with a buring pain, expecially when I would urinate. My husband was treated as well for everything and we would only have sex with a condom and made sure we were extra careful about being "clean," and this was only when I wasn't feeling half the irritation I felt. This has become very frustrating and depressing for me. After reading some articles about VV I decided to try some things out and make an appointment with Dr. Glazer. I have noticed that the pain would subside if I drank numerous amounts of water(weird) and sometimes I would apply plain yogurt to my vulva to help ease the burning (sometimes it works). Has anybody gone through a series of infections and been left with a burnning pain?? Is there any hope for me???
CommentHi i've been reading over the last guestbook and would like to see if anyone has experienced something similar. just over two years ago i had a 8cm bartholins cyst removed ever since i've had pain during intercourse. i had a consultation 18 months after the excision which found a sinus. i have since had my left gland removed which was extremly painful. i have now been told that i have vulvodynia i have tried vagifem, instillagel and am now trying amytriptalyne to relief pain. i have found this website really useful but i have yet to find anyone who has experienced this following surgery. Thank you
CommentHas anyone every done a body cleanse? Did you feel that has helped your vulvodynia? I want to clean my intestinal tract, liver, blood etc...but am scared that may make my vulvodynia worse. Does anyone have any advice? I am tired of all these major food allergies. Everytime I eat/drink anything (even a glass of water) my brain feels like it is starving for oxegen, sometimes it feels like I'm going to have a seizure and most of all, it makes me feel either depressed or like my nerves in brain begin to hurt and make me feel like blowing my brains out. It ONLY happens when I eat. If I don't eat anything, I feel like a normal person. So not only do I have3 vulvodynia pain, I have pain in my brain too. Please...ANY ADVICE would be appreciated. Thank you.
CommentHello everyone - I posted on this page a few months ago. I have 3 more flucanozole left to take & I'm a little nervous about getting off. I only had 2 bad flare-ups on the flucanzole. After the second one (a really weird episode that lasted for 3 days - I felt feverish in addition to the pain), I went cold turkey on the birth control pill. I had been taking bc pills for 4 years and never had a problem, so the doctor initially told me that probably wasn't the source of my pain, even though he mentioned a recent study that linked birth control pills and vulvar pain. Anyway, that helped A LOT. For the first time in months, I've had pain-free days. I was optimistic that would be the end of all this, but I've had some days w/ a little pain this past week. Also, I decided to only use organic cotton tampons and maxis. I found them on drugstore.com. It's so funny to me that no other drug stores carry them, that I can find.
CommentYou won't find the cotton tampons at a regular drug store. You have to get them at a health food store. Look in your phone book for one near you. Any place that sells herbal supplements will carry them.
CommentI have been feeling burning, rawness, soreness, redness, yeast infections, and this unexplained pain for almost 3 months now. sharp pain my lower right pelvis. my urine smells strong and I feel so tierd. tierd of doctors not being able to help, medications that dont work, the embarassment, the lonlieness, the pain. i feel so suicidal, all i do is cry. this all started with severse vertigo one morning and i collapsed, i dont have diabetes, just a mean back to backto back to back yeast infection that wont quit and unexplained pain "down there". no sti's or urine infection. i'm so..very..tierd.
CommentTo Just Need to Talk - I can understand how upset and frustrating this must be for you, but please don't hurt yourself over this - it will only make matters worse. What kind of doctors have you been to? Have you received any kind of diagnosis? Most of us have had to go to numerous doctors before getting any real help, you may just need to find someone who can adequately evaluate you. Have you definitely been diagnosed with yeast infections, or could they be a different type of infection? I hope you feel better.
CommentHi... I agree with the last post. Please don't hurt yourself over this. I know it can be tough and sooo frustrating. Have you tried changing your diet at all? And yes, which kinds of doctors have you seen? Don't give up - there's someone out there who can help you... I bet many folks who post here have some good recommendations.
CommentPLEASE don't hurt yourself!! You can get better. I have been suicidal myself MANY times but I am so glad that I didn't act on it. I work with a Dr. of Chinese Medicine and I feel SO MUCH better than when I had those dark thoughts. Chinese medicine is NOT the only way to get better either. There are lots of women who have had success with other stuff too. Read through this site. Try changing your diet - maybe cut down on starches (that helps me) and only drink water for while. See if it does anything. And, most important, keep researching and trying out different things. You must make it your mission to get well. Do not leave it to the doctors to figure out for you. Also, where do live? Maybe someone on this site knows of a good doc/health practitioner near you. Don't give up!
CommentThank you all, there I go..crying again! Yes I was diagnosed with yeast back to back, tested clean 3 times for all sti's. I was told it may be vulvodynia. Its such a horrible feeling, feeling like I want to jump out of my own skin, my own body! I am in toronto, I dont know of any specialists here, I found out of this condition by googling because I either had docs tell me pain was in my head because tests are all negative for stis (all male docs), then a lecture from a gyno about being so nervous (also a male.) He made me feel worse than when I went in. Of COURSE I'm nervous! Thank you all for your posts, when I feel like that, I try to just distract myself, not easy when Im in pain. Your kind words and support offer some comfort that I have not received so far. Thank you all. And I hope health will be restored in everyone!
CommentHello, I am new to this website and haven't read too many comments. I writing to say that there is hope. For the last 3 1/2 years I have been symptom free - for one reason. After 4 long years of terrible pain and burning I was fortunate enough to find out about a treatment that works for the vast majority of woman. No, this is not a cure but it sure feels like one. Please believe me when I say that I KNOW that this disease is NOT in our minds. It is real. Since there is currently no cure, I was willing to settle for whatever would give me back my normal life. For now, it came down to finding a medication that would block the pain and burning message to the brain. Don't worry if you have redness, etc., it eliminates all that in a short period of time. I could not tolerate tricyclic antidepressants so that wasn't an option. What I found out from the doctor doing the research is that a woman can try ANY of the antidepressants available. The main thing is to find a doctor who is willing to work with you. If they think you are crazy - leave! If you can find a doctor who specializes in psychopharmacology that's perfect. It just means that they have in depth knowledge of these medications. My doctor believed in my problem and has helped many people with pain related problems using anti-depressants. If one medication doesn't work, even after reaching the maximum dose (this doesn't take long) try a different medication but FOLLOW THE DOCTOR'S INSTRUCTIONS. If s/he tells you to taper down the dose and not just stop suddenly, it's important to do so or you can have side effects. My only hope is that any of you who read this will at least try it. If your suffering is as awful as mine WAS, I can't believe you wouldn't try it. There are no words to express how wonderful it is to have my life back again. I want SO badly for all of you to feel better. Research has shown that this treatment helps about 98% of women. 98%!!! I have just received a letter from the doctor doing this research. She has asked me if I would write about my experience which she may put in her book. I've tried so hard to put this behind me since it stole so much of my and my families life. Now I've learned that my 19 year old niece may have vulvodynia. The truth is that we all have to share whatever hope and healing is available. I tried to tell other suferring women about this treatment in the beginning and they wouldn't listen. They think taking antidepressants means giving up. What a mistake. If it works, it is the start of a new and wonderful life. I'm proof that it works for the long term. I wish you all the best of healing. Sincerely, Janet
CommentHi Janet, I am glad to hear that you have found something that helps your pain. I was curious if the research being done was on a particular antidepressant or if it took a look at using different types of antidepressants and comparing the results. I too was unable to tolerate the tricyclics and am very sensitive to medicines. I've tried many different treatment options to no avail. My doctor thinks that I have some nerve irritation due to pelvic floor dysfunction and my pelvis being out of alignment following a car accident. I'm doing therapy to work on those issues, but feel like I need to find a way to calm the nerves down in the meantime. Since I couldn't tolerate the tricyclics or anticonvulsants, I was looking into SSRIs and SSNRIs, but there are so many options I feel like I'll be trying medicines forever. Any suggestions on narrowing down the search, or was it just trial and error for you as well? It would be nice to take a more holistic approach, but I am trying things that I feel are appropriate for my situation, and if that includes a medication then that's fine with me-as long as it works and is not harmful. When you have burning pain 24-7 for years you tend to not be as picky. Plus, I feel like if I could calm the nerve irritation down for a while it would help the whole area get back to normal. It would be nice to get the pain under control while I'm trying to address the underlying issues, because that has already taken me 3 years, and who knows how much longer it will take. Thanks for any information.
CommentI think we all have felt just like you feel. Definately the stress and nervousness you have makes the pain worse and even stress can actually cause yeast!!! From your symptoms, it sounds like your body has alot of yeast in it. Unfortunately sometimes chronic yeast infections of the vagina can cause nerve problems down there. The pain of yeast infections inflame the nerves. I use a product called Candex. You can get it at health food stores or online. And the great thing about it is that it doesn't cause die-off which can be worse than the yeast itself sometimes (but tha tgoes away). I had die-off before and it was crummy. Then I found about Candex reading this site. It's awesome. Do some reading about it and if you think it sounds good too, then you can try it. The worse you have yeast the longer it will take to go away. I take Candex daily for maintainance. As much as I don't like to use chemicals in my body, I am going to suggest maybe you talk to your doctor and see if they can't give you a very low dose Xanax. I use it when I get very stressed (usually when I have PMS) which can cause me to burn. I discussed different drugs with my doctor and since I do not for any reason want to take a drug every single day, we decided 1 Xanax as needed. I had a bottle of 20 pills for a year. It helps just knowing that I have them for just in case. I prefer natural means, but even St. John's Wort and the like, you have to take daily. Now, if you feel you need something daily, I would go the natural route. Taking something that laters your brain everyday I feel is just yucky. You never know what those chemicals will do, so in MY opinion, I would use something natural on a daily basis. Also, if you want something chemical for yeast, Diflucan does NOT work well at all. I used to use Nizoral tablets, but now that I have found Candex, I use that instead. Here is a site you can read about it at. http://www.naturalhealthshoppe.com/ at the left in the search bar just type in Candex. I hope you feel better soon. We all know how you are feeling. And even if the pain doesn't subside, you actually start to tolerate it. Oh yeah, and a Lidocaine ointment is really helpful. Get 5% ointment. There are creams and gels, but they irritate. You learn alot reading here ;o) it may sting when you first put it on for a few seconds, but that is normal. It will stop in a few seconds.
CommentTo Just need to talk... It was like I was reading my own post but I didn't write it. I'm also in Toronto and I'm not really sure where to go next, although I do have an appointment at the Wasser Pain clinic at mount siani in Oct. I'm pretty jaded though already, and I'm not holding my breath for any real treatment options. You can email me privately if you want. Steph
Commentthank you ladies, a part of the agony of this is feeling isolated. You all are a wonderful support group. Well I went to a doctor again yesterday, (I've seen so many!) who originally told me it is vulvodynia, and this doctor explained that vulvodynia doesnt cause constant chronic pain, just only after touch. I told the doctor, that is not always accurate, and that hundreds of women have ongoing chronic pain with vulvodynia. It seems after seeing all these doctors, that many of them are misinformed/uneducated in this area, which makes it even harder. I would love to hear back from you who is going to the wasser clinic. OCTOBER! Dont you hate waiting? I'm curious, of the ladies here, who feels swelling and pain 24/7, and who's is ONLY after touch? I'veseen two doctors now who make me feel crazy, like its all in my head. Yeah, redness, rawness, visibly swelling tissue, and hair that feels like razor blades on skin that feels bruised. Oh yah, thats all in my head *sarcasm* Sorry ladies for the angry post, Im just venting :S I'm sure you all understand. As for the ladies talking about diets/sugars, should I *not* be eating all this flavored yogurt? Also, this all started almost three months ago with itch and discharge, it was after taking oral fluconazole that burning started. I then had more yeast infections and had taken 4 difulcan/fluconazoles and gentian violet. NONE of them made me feel better. I just figured out how to describe the pain: Its like having a sore throat - only in your vagina! again, ladies, thank you. Your support is appreciated, more than you know.
Comment..just to clarify. I feel pain 24/7. My doctor on the phone said vulvodynia could be the case when I told her about the "condition I read about on the internet". Then, she all of a sudden changed her mind, because she said vulvodynia ONLY causes pain after touch". That is not always true..is it? Because this is NOT in my head.
CommentNeed to talk. Yep mine is 24/7 as well, many of ours are. Your doctor probably is refering to vulvar vestibulis syndrome where pain is only provoced after being touched. Read up on the faq's on this site, it is litterally the best resource on the internet to help you. And yes, I do hate waiting for an appointment, but at the same time, I would rather wait forever than hear them say we can't help you. At least at this point I still have a vague vague hope of being better. Steph
CommentMine is 24/7 also. I think there is some confusion in the available literature as to the nature of the pain. Sometimes I read that pain is classified as vestibulitis when it occurs only in the vestibule, and only with contact to the area. Then I read that patients with vulvodynia have pain in areas beyond the vestibule as well, and their pain comes and goes or can be constant. Or you can have both vestibulitis and vulvodynia. I have pain all the time, in various areas of the region, and the vestibule cannot tolerate any kind of contact-pelvic exams make me hit the roof, can't wear tampons, great increase in pain when I sit, etc. You are right-the pain can be 24-7 and still be vulvodynia. I usually read that vulvodynia is a diagnosis of exclusion, so basically if you have vulvar pain (which is what "vulvodynia" means) without some kind of infection, etc. to explain it, then it may be vulvodynia. I've seen entire research papers written on the subject of how to classify the "vulvar pain syndromes" and whether or not vestibulitis and vulvodynia are different manifestations of the same problem, or if they are completely separate problems. Unless all that interest leads to a cure I don't care what they call it. I wish more time was invested in researching a cure. Anyways, please hang in there. Having hope that we will get better, and knowing that there are things out there that we haven't tried yet helps me to stay positive. I hope you are able to find a doctor who is more up to date, and knows that vestibulitis/vulvodynia can create constant pain. Take care.
CommentMan, can I relate to your symtpoms,,,, the hair especially,,,,feels like a brillo pad rubbing sunburned skin,,,,my skin is even sensitive....the creases of my upper thighs even feel like they getting cut by the softest touch,,,, I have ben told I have vulvodynia,,,,and yes this can be 24/7,,,,I have had this everyday with no let up for about 18 months,......burning vulva,,,,hair and groin in general....sucks...AND YES THE MENTAL ASPECT is just insane........the nervousness, the feeling of wanting to jump out of my skin.....somehow , someway we will get there....just know you are not alone, and feel free to email me direct,,,,,Ive tried a lot of meds...had surgery etc....but something will give....it has to. I find connecting is the key,,,,,the isolation is too much to take,,,,,,it helps me cope to reach out.... Sarah
CommentI developed vulvodynia exactly two years ago. For a year and a half I felt constant pain 24/7. It felt like acid, chemical burn. A nightmare...sometimes I came very close to checking myself into the emergency room. I took sleeping pills to help me through the night. Believe me I tried everything you wonderful ladies (and one guy) recommended on this site. The only thing that kind of helped was an occasional glass of red wine. After a year and a half (and reading the V book) I realized the pain was caused by nerve damage which followed a very mild case of HSV1 genitally. The good news-within the past six months the pain has gone from level 10 to 1, sometimes 2. I purchased some "natural healing" books and treated myself for shingles- which can cause major pain and nerve damage. Honestly, I feel so much better. B-2 vitamins helped as did topical aloe vera gel, which I keep in the frigde (Forever Living product) I pretend its lidocaine- which actually aggravated my condition. Good luck to all of you and don't give up hope. I was on the verge of doing so and glad I didn't.
CommentCarla, I also had my Bartholins gland removed back in 2002 and the pain inside is still awful, and it tears and bleeds. The skin just pulls away from the side of the wall. I also tear on the outside. Sex is impossible. Has anyone given you anything to help your pain? The muscles are also VERY tight. DOn't know what that had to do with the surgery. Any suggestions on a fix would be helpful. I have had vulvodynia now for 19 years and it isn't getting any better. In fact I am shrinking so much a finger is too large. Help!!!!! I am at the end of my rope.
CommentHi Liz you are the first person that i have found that has had a similar experience. i'm only 20 and have the problem for two years. i don't experience any kind of tearing but the pain is still bad. at the moment i am trying to control my pain with amitriptyline which has left me very sleepy it works by blocking the nerves. i have tried a local anaesthetic gel which you can apply yourself called instillagel. this works by numbing the area completly. this did work but it was incredibly messy and wouldn't fit into daily life even though it works. they have suggested injections into the area with local anaesthetic gel and steroids but having been through two operations don't want to resort to surgery again. has anyone spoken to you about differen surgery? if you have any helpful tips i would be very grateful.
CommentThe First For Women magazine, August 19, 2002 page 24 says: "If you have persistent vulvar pain, shingles may be to blame." reports Anne Louse Oaklander, M.D. Vulvar Shingles (which affect 1.5 million women) stem from a viral infection and can surface as a rash or irritation on the vulva, followed by pain. Antiviral meds can cut the risk of pain by half, but the condition is often misdiagnosed as genital herpes or vulvodynia. If you have these symptoms, get checked for herpes AND shingles." SOURCE: Anne Louise Oaklander, M.D., Ph.D., an assitant professor at Harvard Medical School. From what I understand.. ..herpes zoster is the culprit for shingles but yes it is only a problem for people who have had the chicken pox...varicella. .. I had chicken pox BAD!!!! The thing that is interesting is that it lies dormant in our bodies until depressed immunity, sickness or STRESS....then HERE IT COMES (it seems like most women get vulvodynia under severe stress or illness).... .and it can attack any area of the body, including the vulvar area...usually attacks the weakest part of our bodies. Herpes and shingles can show up as irritation/ sore spots like a carpet burn feeling or sores.ulcers that dont heal... It is detected through HSV tests....so people who have positive hsv 1 or 2 can acutally have shingles.... or herpes... I recently had some testing done POSITIVE FOR BOTH IgG and IgM and my IgM (which shows current/active infection) was REALLY HIGH,,,,at 80 IgM ....<10 is normal.....so thats why this rung a bell.... I have had a friend of mine who told me a story of a man : he had severe thigh pain , BURNING, HYPERSENSITIVTY, horrible pain,,,,etc etc that we all know so well....FOR 2 YEARS. He tried every medication , fully disabled and lost his business...after two years the docs decided to try one last medicine for the hell of it...ZOVIRAX. ..after two weeks,,,HE WAS OUT OF PAIN the dr. concluded, the virus was UNDER the skin layers attacking his nerves all those yrs, HE NEVER HAD ANY SURFACE SORES....... so for what its worth....this is just a thought Sarah
CommentFirst of all, thank you to everyone who has written their stories here. It helps tremendously for others to read your stories and try to make sense of this mess we call Vulvodynia! For those that are interested, here is my story... :) It starts about 6 years ago....I woke up one morning with what I thought may have been the start of a UTI. I called my gyn and he called in an antibiotic. I took that and then promptly got a yeast infection (of course...I can't do anything the simple way) for the next 4 months I took antifungals, antibiotics back and forth with lots of vulvar pain and swelling. At my last Dr. appointment, I broke down and started crying and basically told him that I could not live that way....he started writing prescriptions for Xanax, Atarax, and Prozac. I started the Xanax and Atarax immediately and my symptoms were gone within a week! I thought this was some kind of miracle! (I never did get the Prozac filled) and all was well in my world...... Fast forward to May 2006.....It strikes again. I have often remembered my time 6 years ago (I read this message board THEN too) and was so thankful that it went away....now I'm devistated that it has returned. I was sick from some food I had eaten and started getting symptoms of a UTI again...sound familiar? same thing all over again. I have been on the Atarax and only rarely the Xanax for 6 years now....I thought once this pain returned that I could just take MORE of my atarax....nope. This time I have been much more proactive. More informed and certainly more educated about this condition. I have been through 3 docs in as many months and SO lucked out in finding one that started me on Elavil a few days ago and Claritin last week. I think the claritin is helping alot. I think my body just got so used to the atarax that it's not working anymore. This latest doc is also wanting to refer me to Dr. Soper at MUSC....does anyone have any experience with him? also....mine is VERY stress related. I have had chronic hives all of my life. my symptoms started in May just before I started a new job and hasn't yet let up.... Good luck to everyone and thank you for your help!
CommentGood morning, Ladies! Just to inform you, that my homeopathic treatment proceeds wonderfuly. No pain at all! I'm still working on the full opening of my muscles deep inside, the work is menthal. Once the full sexual desire is gone back to normal, all will go to its own place. Best luck to all of you:)
CommentCarla, yes I have been told I need to have all the skin removed from the inside and outside and replaced with new tissue. I don't think so!!!!!!!!!!! I can't even imagine. I haven't had any luck with the other "rather normal surgeries", don't know why he thinks this would work. It was a gyno-oncologist, so I guess that reconstruction is his thing. I keep searching for answers. I wonder if I have lichen sclerosis since I have the shrinking of the opening. I have lots of deep intense pain on the inside where the bartholins gland was removed. Lichen sclerosis can have itching which I don't have. I also don't have the other symptoms of vulvodynia or vestibulitis like burning itching, no yeast infections at all, only shrinking, tearing and intense pain only on touching. If I leave it all alone I have no discomfort at all. I try to use dilators the stretch out the opening and I usually get a UTI. It is almost not worth it. I feel so inferior as a women. I am missing out on some very special moments with my husband. Our daughter is off at college and life could be soooo different and romantic, but not possible. I have gone on too long. If anyone has any similar experience with this of info that might help I am all ears. Prayer is the only hope I have had for years as doctors have done nothing more than make me worse. Just fattening up their pocket books. You girls be VERY careful when surgery is mentioned as your option. They get lots more money from that then doing a little research and prescribing you a medication!!!!
CommentI wanted to post on here that I found something that works!!! After a year of going to 5 different doctors including the "best" one in the region, nothing worked. I was having 24/7 burning, sometimes itching, and nothing would help. i tried drinking nothing but water and going on some various diets. i was treated for yeast infections, urinary tract infections, given creams, pills, you name it. I am 30 yrs old and just got married, so not being able to have sex without pain has been awful for the past year, not to mention all the emotional pain and anguish of going to work and coming home and crying every day because the pain was so bad. I became very sad and depressed and have put on about 10 pounds from not being able to work out too. Anyway, after a year I decided to broaden my horizons because obviously conventional medicine was not helping. I went to see an acupuncturist and immediately felt relief. The first time I went, I just told her about my symptoms and she said she sees many patients with this problem, because conventional medicine does not help. I am scared to death of needles but I have to tell you, it was worth it!!! I did not feel 100% relief immediately, but i had about 3 days of no pain or burning. The second week, I had 5 days of no pain or burning. By the 3rd week, I went almost the entire week with no pain. I recently just finished my 5th week, and last week I had no pain whatsoever, no burning, and was able to have sex again with NO pain during or after!!!! I have also been able to eat food that used to really irritate me, and I have even had drinks other than water now, and it does not affect me anymore! If you haven't tried this treatment, PLEASE, YOU OWE IT TO YOURSELF TO TRY IT! This is the only thing that has worked for me. I really feel like shouting it out to everyone to please at least try it. If I can do it, you can do it! My acupuncturist said that most people with vulvodynia can be treated and see results within 3 months. She said it could be longer depending on how long you have had it. She originally thought it would be 2-3 months for me but it has been much less. Even if I have to do it the rest of my life though, I don't care. It is worth the relief. Also - to any husbands who are reading this, please encourage your wives not to give up. And do NOT give up yourselves! Please keep trying. I thought I would never have my "normal" life back and now I do!!! Anyone who wants to contact me is welcome to. I am so excited about finding something that helps. I hope this helps and encourages somebody! Thanks for listening.
CommentTo Erin: CONGRATULATIONS, ERIN!!!!!!!!! I'm very very happy for you! I hope you become painfree after the next acupunctures, and you keep it up. Support from Italy:)
CommentI would like feedback from al those who uses Estrace vaginal cream. I cured my IC and vulvodynia by curing yeast and building my immune system. I avoided sex for two years while healing. I am menopausal for 6 six years now and sex does not hurt but my vagina is irritated and sore two days after sex and itchiness as well. I was told to use Estrace years ago but was afraid because I know that Estrogen aggravates yeast and can cause yeast infection. Anyway, I tried using it last night only 1mg and did not insert it all the way, It felt fine but I started to be a little itchy. I am so scared as I know it can make yeast grow. Did any one had any problem using it like irritation or did anyone have success in using it especially if you are menpausal or did anyone develop vulvodynia from using it. Please help, I am desperate because I am just so afraid to use, but I will lose my relationship if i refuse to have sex. I can have sex, but hell it hurts so much after. Thanks for listening and need your feedback. Also did it help you sexually. Thanks
CommentTo Dorothy: I been posting here for years, since guestbook thirteen regarding my wife's symptoms and hoping to gather information and interact with sufferers in order to learn. The mention of Estrace comes up very often because it is a medicine doctors like to throw at women who have problems of the vulva. Unfortunately, unless you have low estrogen supplementing with Estrace won't be of any help and might cause further damage. If you are going to give it a try, you might consider seeing an endocrinologist first to discover your baseline of hormones. The doctor may swab your vulva in addition to a blood test to determine estrogen presence and levels at the site of the problem. If your symptoms are due in part from low estrogen then you may be helped. Best of luck.
CommentWould like to talk with others that suffer as I do with this disease. can you help me ?
CommentTo Frank. Thanks Frank for yor prompt reply. I have been on menopause for 6 six years that is why I feel I may be estrogen deficient. But the problem is when I got sick of IC and vulvodynia 5 years ago. There are time that I could not at all have sex at all and I have tears in the vagina. Now since I treated for 3 years now continously with herbs and accupuncture, I could have sex. The sex does not hurt me but after two days I felt soreness. But it goes away eventually after 4 days. I do not get tear anymore as well so I thought it is due to atrophy. I am scared to death using it as my chinese herbalist told me it can cause me more harm and can aggravate yeast. I know that my problem is yeast because of my multiple problems like sinusities, bronchitis etc and while detoxing I could see yeast come out of me. Also with accupuncture and chinese herbs, While detoxing, i get a lot of white, yellow, brown dischare and mucusy which makes me believe that my yeast was deep burrow inside my cervix and skin. I had use boric acis, amphotericin douche, tea tree oil, acidophulus douche, pau' d arco douche alterntely and it had helped my vulvodynia which made me believe my IC and vulviodynia was due to yeast. My IC was under control as well. I am well without sex, but Frank my partner is like you being Italian is so sexually active and cannot live without it. We have a beautiful amd happy relationship and this health problem bothers me. I heard that there are other things to moisturize and built up the vaginal wall that does not contain estrogen. Do you know of any. I am on my second day now with estrace only 1 mg at night which is very little and i do not even insert it all the way. Just close to the vaginal opening and after two days, I feel irritation and abdominal pain. I am so afraid of getting a setback. My problem is yeast due to long term use of birth control pills, uncontrable use of antibitoics for anything I had and bad diet of sugar. My body was completely out of balance and toxic. I think I will stop it. I feel safer because I know I do not put any more toxin in my body even externally. I will just look for something which is a good lubricant. I also heard that sex can aggravate and can cause yeast infection because of the motion if you already have yeast overgrowth. I do not know what to do. If I am alone and no partner to please. I will be fine and well. but I am so happy with my partner and I do not want him to leave me. Please help for advice Frank. Thanks
CommentDoris: I'm glad you were not upset that a man responded to your post. It seems that all of the ladies here and myself as a man try to second guess mainstream medicine because the answers offered are not helping. I think you need to see an endocrinologist to determine where your hormones are before you started the Estrace. It would be the same for a man planning to supplement his body with testosterone, he needs to know where his levels are before using the hormone. My wife has had a problem with tearing for roughly five or six years now and nothing has helped. The skin at the six o'clock position is very thin and fragile not only to the trauma of sex but even the simple movement of her own body. I believe years ago yeast overgrowth was a serious contributor to her redness, itching and skin irritation, possibly leading to the tearing. I haven't seen the yeast for quite some time but I imagine it is awlays present even if not to the point of visual overgrowth. I don't want to get into the whole issue of my or any other man's need for sex again. If you feel better not having vaginal sex, then you have to decide what is more important for you? You can get the hormone test and use the medicine and hope for the best and you can also prepare yourself for the possibility of not having sex and not suffering. Right now my wife and I are going through a very difficult time in our relationship. Our priorities are very different and I am very depressed as a result of this. She is putting a lot of time and effort into supporting her ill parents while I am left alone and lonely. Sex is not the cause of all problems in couples with vulvodynia. I wish I could offer better advice but I'm at a loss for ideas myself. I have all this passion and desire to be with my wife and I'm alone. Best of luck.
CommentDorothy, I have used premarin cream for 19 years on the inside and outside after my hysterectomy in 1986. I have never had a yeast infection from it. I can't really say that I think it has made any remarkable differences, but I am afraid not to use it as I might shrivel up completely!!!!!! I personally don't see that it can hurt you, but I am by no means a doctor, except I think I sometimes know far more about these female problems than they do.
CommentHi Liz: I'm sorry for everything you've been through. I have Lichen Sclerosis as well as Vestibulitis. I've never had much itching, mostly burning. I'm also menopausal. I've been using Estrace cream topically for many years. It has helped somewhat. For the L.S., I apply Clobetasol ointment once a week for maintainance. It has reduced the 24/7 burning. However, I had a very painful pelvic exam/pap by a female Gyn. who was so rough. I thought I was going to pass out from the pain. She was so insensitive and I will never see her again. But, I haven't found a decent Gyno to help me and it's very frustrating. My husband and I haven't been able to have sex in a few years. I go to Acupuncture once a week for Vulvodynia, TMJ and arthritis. It's also helped reduce the burn. If anyone knows of a good Gyn. in San Diego (not Willems), please let me know. Liz, feel free to email me back. Sue
CommentHello again, Frank! After my great results with the homeopathy, I was asking myself did your wife tried it as well? Forgive my curiosity, but after seeing great improvements and wonderful results with my body, I would like to know did she tried homeopathy, and if yes what they gave her and how did they explained all her problems? I'm on the peak of my happiness, it's just so great to make love after 2 painful years! And if I can heal myself, why the others shouldn't? Support from Italy
CommentTo Chiara: Thank you for your interest, and curiosity is a good thing not something to be forgiven. No , my wife has not tried homeopathy. She refuses to put anymore energy into finding a treatment for her thinning skin and recurring tear. She puts a lot of energy into her parents who are ill and does not take care of herself which really bothers me. I am very happy for you and any other woman who finds a treatment or cure for their symptoms, but please realize that until we know what is causing these many different symptoms that are all grouped under the word Vulvodynia it is unlikely that one course of treatment will help or cure them all. I can accept a woman who has been suffering due to yeast or food allergy getting relief or feeling cured by following a diet and taking supplements that relieve the cause of her pain, but for those women who have symptoms and no diagnosis as to the cause there may be no current treatment available. What if some women are suffering due to a genetic cause? You must accept that the only treatment for them would be through genetic research and that could take years if ever. I wish you continued pain free days and certainly encourage other ladies who suffer from similar symptoms to enquire about what helped you to feel better. My wife is from Calabria and they say the Calabrese are a bit stubborn, I agree. My best to you, regards from America. Frank
CommentSue, thanks for replying. What type of problems has the LS caused you? I understand you can get sores from it, which I never have. Do you have the shrinking problem at the opening? I have not changed on the inside. The doctors says I have plenty of room, it you could get to it. What does the Clobetasol (sp?) do for you? Do you have the tearing and bleeding? Have you ever had any surgery there? I wondered if the two were related. I appreciate any feedback.
CommentLiz, Before I starting using the Clobetasol ointment, the Derm. who prescribed it saw signs of scarring and a white patch which indicated that I have L.S. According to her, it's inactive right now, so it's the Vestibulitis that causes me burning and pain. The Clob. relieves itching, burning and inflammation. The only time I had bleeding was after the pap smear, but I think it was b/c that Dr. was so rough. The most frustrating thing for me is that my vulva "looks" normal to Drs., so they can't figure out why I have pain . The Dermatologist I see for the L.S. is very highly regarded in her field yet knows nothing about Vestibulitis. I don't have tearing. I'm not sure how large my vaginal opening is b/c it hasn't seen much action lately except for when I put Estrace cream on the vulva. You could seek out a Dermatologist who treats "vulvar dermatoses" to find out if you have Lichen Sclerosis.
CommentTo Frank: Yes, Frank, you're right about the eventual genetical problems. There no homeopathy could help. And those cases would need this type of researches. But at the same time I still believe (analyzing my story and many others written here and sent to me), that the big cause of Vulvodynia and Vulvar Vestibulitis is called stress! The stress is the one, that is creating hormonal disbalans in our bodies. The today's stress has incredibly high levels, confusing many women and their lifes. Look around, Frank, our happiness depends on money! We should have a good work, to be independent from our husbands/partners, etc, we should keep the good work while being stressed every day that we may lose it, everything around us is shouting "money", our happiness depends on money!!! If Vulvodynia/ Vulvar Vestibulitis of the past has been caused by sexual abusing, sense of sexual guilt, sexual shame, bad sexual education, our big problem today is the stress we have to fight with, every single day. Let's start thinking also in this direction, sound's logic, isn't it? Yes, it's very bad that your wife is not taking care of herself. The love for the parents is a holy love, but the love for ourselfs is the first we need to grow up and be able to love the others. I hope she will understand it one day. I personaly don't know any Calabrese, I have to ask my husband how they are:) But the stubborn ones are everywhere, and I'm one of them:) Regards from Italy
CommentHi Frank and Liz, Thanks for reply to my post. I know a lot of people say it does not hurt, but I guess since I got symptoms after using it or perhaps my vagina is sensitive and it may not be yeast, it makes me afraid to have the constant pain. Perhaps my pain is due to sex since I maybe atrophic and my tissues cannot handle it. But when i had sex twice last week after a long time, it itches after two days but it went away. This time, I felt fine after sex, but after two days i felt soreness in the opening which made me believe it was atropyhy. So I applied some estrace cream and now I am sore and burning and just 1 mg for two consectuive days and I developed mose abdomen cramping. I guess I should just stop it as I should listen to my body. I thank both of you for your adice. To Frank, does your wife aside from the tear hurt after sex. I would like to know. I hurt two days after/ Also is your wife menopausal. I am 55 and 6 months. Too young still to suffer sexually like this.
CommentTo Doris: My wife is forty seven and still gets regular periods. Aside from the small paper cut like tear which sometimes does not occur, she does not complain or mention any pain either immediatedly after sex or in the days following. Sometimes we will have sex two or three days in a row without a problem but that's pushing it and there is also the problem of semen causing a yeast infection when sex is that frequent. We have not had sex in several days due to arguing so I'm hoping she is feeling well. I believe Estrace is most helpful for women who have low estrogen so it just might prove to be what you need. Consider that sex will leave you a little raw and almost any medication applied to raw skin will burn. Take some time away from sex and use the Estrace as your doctor directed. Please let us know if it helps you. Good luck.
CommentHi ladies ! I went today to neurologist . He prescribed me Tegretol. I saw side effects and it very scary. Did any one try this medicine ? Thanks. Marina.
CommentI'm 19 years old. When I was just 15, I began to experience severe pain during intercourse with my boyfriend of 2 years. I couldn't understand it. I took pills and various treatments for yeast infections to no avail. I visited my doctor. My doctor seemed useless. I yoyo-ed back and forth every week, complaining of severe pain. Swb after swab, tears in my eyes, he gave me cream after cream after pills and pills. I was besid myself. After 8 months, I was referred to a specialist GU clinic. They finally diagnosed me with vulvular vestibulitis. I was horrified. I had never heard of it and was crushed to hear there was no cure and that it was rare for a girl so young to have it. They gave me some cream to try and not surprisingly it did nothing. I've never had back injuries. The only thing i might attribute was my then-boyfriend's hunger for constant intimiacy. Perhaps forcing my body to do as it didnt want caused this. I'm not being punished. For 4 years, there's been nothing but pain during something that should be a magical and sacred union of bodies. I cant enjoy sex or anything sexual. If anyone knows of a way to ease the pain, please, share it. Many thanks.
CommentHi - I am currently on Endep for the 2nd time but am having terrible side effects again (the worst being the inability to speak properly due to a twitching of my tongue). I need to go off the Endep/Elavil because apparently it makes my particular food intolerance worse (inhibits an enzyme that I am already lacking). I'm thinking about trying Lyrica next but I would like to hear from people who have tried Lyrica after Endep/Elavil and/or Neurontin to give me some insight about its relative side effects compared to these 2 other drugs. Although Endep is awful I had much worse side effects on Neurontin. Thanks, Liz.
CommentTo All: Dear Ladies, today was my second try to make love with my husband. Only some of the inside muscles have been little tight, and they became much flexible just after 5 min. No pain at the entrance. I reached my first vaginal orgasm after 2 years! I'm at the beginning of the 8th month of my homeopathic cure, and I do feel wonderfuly!!!!!!! Support from Italy
CommentI have submitted a couple of entries into the guestbook and have found reading the past entries from other women who are suffering from vulvodynia very helpful. I have had Vulvodynia for many years now and have tried many, many treatments including amitriptaline, physical therapy, acupuncture and active release technique. These have all helped a little, but I still suffered from a lot of pain. I tried seeking treatment from Wendy Fellows, a health care consultant. I actually wrote an entry about how helpful it was. This was written after trying the treatment that she recommended for only a couple of weeks-she recommended diet changes and herbal supplements. Unfortunately, after about 3-4 weeks after taking the supplements, I experienced severe pain. This was almost the worst pain that I ever experienced. I stopped taking the supplements and the pain decreased. Wendy is a very nice person and it seems like she helped some people, but please be careful if you choose to follow her recommendations. I was upset that I wasted so much money and it only brought on more pain. After reading many of the entries about Dr. Davis in Arizona, I decided to make a trip there and seek treatment from him in April 2006. I did not want to spend so much money to seek medical care, but I figured that I was already spending so much money on supplements and I was willing to pay just about anything to reduce the pain. Dr. Davis was extremely nice and very helpful. He offered a lot of hope and encouragement. When he did the exam, he said "Oh, I think that I can fix this" and it almost brought tears to my eyes. He prescribed a couple of medications and explained everything that he did. I went for a follow up visit in July and he said that everything looks like it is improving. I have definitely felt a difference. I have not been in pain since July 26th-this has been the most time without pain in a very long time. Also, intercourse is a lot more enjoyable. I am still a little sensitive with insertion, but it is improving. I am trying to go back to PT to help with this. I would highly recommend Dr. Davis. Although it was a distance for me since I live in Massachusetts and it was expensive, it was worth the peace of mind. I now feel like I have my life back and it is not being dominated by this horrible condition. I wish everyone the best and I hope you will find a treatment that works for you.
CommentHi Jodi: I'm glad to hear you're doing better. I was wondering what meds. Dr. Davis prescribed for you. I hope you continue to improve. Sue
CommentTo Sue Dr. Davis prescribed Vagifem and Estrace cream. Also, he gave me a shot of estrogen. He told me to stop taking the birth control pill since he thought that could be causing some of the problem. Please let me know if you have any other questions. Jodi
CommentThanks Jodi. I appreciate the info. Sue
CommentI was doing sooo well with my IC and vuvlvodynia when i used estrace for 2 days thinking it will help me sexually. After two days on it, my vulvodynia and IC came back. I always think that my disease was due to yeast. I immediately took 1 200mg diflucan, inserted boric acid and douche with acidophulus, my itching and burning disappeard. Beware if yu think you have vaginal thrush, estrace can aggravate it. Hormones are the best food for the yease.
CommentI was prescribed Estrace due to uncomfortable sex. I used it for two days and I immediately got my IC and vulvodynia back. I developed terrible burning. I have been doing soo well by treating my systemic yeast. Beware, if you think your vulvodynia is cause by thrush in your vagina, those yeasty beast are hiding under your vaginal walls and skin and cervix and hormones especially estrogen aggravates yeast and give you symptoms. I was scared to death as I thought my vulvodynia was coming back. I immediately took a 200mg diflucan, inserted boric acid and douche with Bio-K (very potent acidophulus) and I woke up the burning disappeared. So if you think your problem is yeast related, beware of estrogen cream vaginally. Once you encourage more yeast overgrowth, it is very, very difficult to get rid of as they are leeches that attached tightly to your mucus membrane.
CommentJust wanted to let you know that there is a doctor who really cares about her patients. I have never met a doctor before that puts so much of her time and effort into taking care of her patients. I was recently seen for a painful vulva and she diagnosed me with a Bartholin cyst. During my many visits to the clinic, concerned calls and pre-op visit she was always there to help.On the day of my surgery she came to talk with me, told me what they were going to do and helped me get through the morning. Later that afternoon I woke up to find her standing there telling me it was all done and to relax a little bit and get up when I was ready. The next week at my post-op visit she was very glad to see that everything was healing well. I have never had a doctor treat me with such respect and care. I know that many of you have another form of pain on the vulva than I had, which can be very devastating.But I want you to know how much I appreciate the time Dr. Haefner spent with me figuring out what was going on and how to fix it.
CommentHello to all. I have been reading these guest books for the last few days. I have had DV since I was 19. It all started after a yeast and bv infection. After many doc and being told it was in head I found Dr Haefner at uofm hospital. I started taking 150 mg diflucan weekly and Elavil. It worked well. I still had flares but could go months with no pain. when idid have a flare i would have to up my elavil till it stoped. In 2001 I had my first daughter. The pain never returned after having her. I thought I was done DV for good. NowI am 30 years old and expecting my seconded daughter in a matter of weeks. The pain has returned. I got a bv infection (very common in pg) and then a yeast infection from the anitbotics. I used a three day otc for the yeast. I have had burning and rawness again. Some days are ok and some I can barley get out of bed. My doc has me on elavil 25mg but I can only take this for a few more days. I have to be off before i deliver. I also was given diflucan three times and have felt much better for a few days after taking it. But it is not considered safe during pg so they don't want me taking it alot. No one seems to know if it will go away agian after I give birth or if i am starting this road all over again.. I seen Doc Haefner at uofm and she said it was flare bought on by the yeast and then made worse by the creams. Still dosen't tell me if it is back for good or will be better after I give birth. My ob wants me to take flagly (s/p?) and lots of diflucan after I deliver since that is one of the things i did after my frist daughter was born. I devloped a BV infection two weeks after she was born. I had NO problems for five years!! Pain free sex, I could wear what I wanted, walk as long as I needed. I didn't have yeast or Bv problems. I did develope IBS but it is mild and I control it with no real issues. Any thoughts or ideas would be great. I am very scared and frustrated right now. Thanks Heather
CommentHi liz sorry i haven't writen back in a while no access to the computer. what you are describing is exactly what i feel. it isn't painful all the time although lately i have discovered that wearing certain trousers and sitting for a long time can course a bruised feeling. do you get this? i also feel that the opening is tighter and to me it feels smaller. i live in england somerset and have yet to find a useful website like this which gives me hope and it is such a relief to find someone in the same position as me. i've decided that i don't want anymore surgery so its a case of trial and error to find medication to control the pain. no doctors seem to know what to do. a lot haven't even heard of what i'm describing. luckily i have been in a relationship for the past 5 years and he's so understanding and supportive finding you and having such a supportive partner i feel better about dealing with this.
CommentLiz - I have been on 75 mg of Lyrica for a few months. I don't feel like it helped or harmed me, I don't think it has done much of anything. I do know that this is a low dosage, so maybe a higher dosage would be more beneficial. I had no side effects from it other than fatigue for the first 2 days.
CommentI'm wondering why none of you react on my great news? I start thinking that you prefer taking drugs and keep trying with them, instead of following already prooved treatment!
CommentTo Chiara: To answer your question, I don't think the ladies here are unwilling to try some of the things you have mentioned but unfortunately there are many things that complicate the issue. Money and access to a person with the proper knowledge might be two of the biggest reasons more women who are suffering with similar symptoms have not tried what has helped you. Many of the insurance companies in the US will only pay for mainstream medical care and many of these women cannot afford alternate treatment. Then there is the problem of accesibility, some of these women live in towns where they are not able to get to a alternative practicioner. Please don't think you are being ignored, I'm sure there are some women who are taking your advice right now and may just not be posting the results. As you know this is a very personal matter and not eveyone can open up and speak about it. Please keep posting and reading, you never know when someone may need your help. Best of luck.
CommentTo Frank: Hello, Frank, let's hope I'm not ignored. I'll keep posting as I do keep reading every day. It's important for all of us and I can not close my eyes in front of the problem. It's true that many women don't have access, living in small towns. But regarding the insurance, I did underline many times that I don't rely on any insurance, because I got really tired of being sick and ruing my marriage with vulvar vestibulitis. To me my familly is much more important than the 16 Euros I had to spend every 3 months (not having fix job, but fortunately having loving husband to support me in any way). And my wish to become a mother is really big, it didn't leave me since I got married. Having a child without making sex is impossible here in Italy, "in vitro" is not yet accepted, not yet legal. (to proceed it I have to pay thousands of Euros for only one trial and go in countries like Switzerland ecc. Being bulgarian and caring bulgarian pasport I can't move to many countries without visa...) So, all these conditions made me search and read in internet all possible about my symptoms, in english and italian (my italian was very poor, I imrpoved it because of my researches). Then I studied the character of the VV, and in 1 month I decided to turn to the homeopathy. No decision was taken in hurry. Best regards to you too!
CommentI forgot one thing, and it's more than important - I found this site while searching, and reading the hundreds of cases not solved and full with side effects, I did decide to stop going to gyneacologists! www.vulvodyina.com and all of you that keep posting here have helped my decision!
CommentI just wanted to take a moment to thank everyone for posting (and reading). I don't post a lot, but the information everyone posts is valuable and helpful. I am happy when I read that someone has found something that works for her, and saddened when I read about someone feeling the worst of it. Either way, thanks for sharing.
CommentWhat a time I had last week! Why is it that doctors are SO UNINFORMED about vulvodynia?? LADIES IN TORONTO, or anywhere, have you also experienced numerous doctors AND gynecologist explain "yeah..(sarcasm)..all vulvodynia means is another name for pain in the vagina. It's not a condition!" WHAT!! And then the so-called gynocologist accused me of having this pain in my head! Anyway, I hope you ladies are doing well. The vaginal pain is one thing, but ignorant doctors really take an emotional toll! Especially when they are rude, or treat you like you are crazy! As for pain, I take prescription aleve (naproxen). It helps a little. Not sure what else to do, with no doctors believing I am in pain? (WTF!!)
CommentJust try my treatment, I stoped going to doctors long time ago. Or better to say, I stoped going to doctors that are practicing only traditional medicine. Mine one is homeopath and traditional doctor. Who doesn't believe your pain, doesn't deserve your time, attention, money and hopes. Don't lose your time convincing people that don't want to understand you. Greetings and support from Italy
Commenthi everyone, i am using the boric acid for while, uselly 3 times a week, last week i use during my period and after 4 days using i had a bad iching, then i thought was a yeast infection and i took a diflucan( i dont know if diflucan is so good is the doc think) that was last weekand than yesterday ifter i have sex i use again de boric acid and this morning i have the same iching really bad, i am geting craze i dont know what to do, and now i dont know if is fron the boric acid or die off or god knows but never echi that bad, does anyone coud help me.are those sintoms normal .i would thanks any help . rosana
Commentah, i just remember i am using olive oil is lubricant , could this be the eching problem? i did use last night. is it ok to use thanks rosana
CommentI use boric acid suppositories and have never had itching. It may be possible that you are sensitive to the boric acid. I don't feel that you can get rid of yeast totally unless you treat vaginally and systemically. I prefer a product called Candex to take orally. It causes absolutely no die off. I use that orally and use boric acid suppositories vaginally. If you suspect that the olive oil is causing itching then try not using the oil and see if the itching subsides. If you only itch after using the oil, then it is the culprit. Some women swear by Crisco oil while others say it causes them burning. I have never tried either so I can;t say how I react to either oil. If you are using the olive oil as a lubricant, then I assume that you are using it for intercourse. If that is so, and you arent using condoms, then it is also possible that semen is causing you to itch. Our vaginas are more sensitive than other womens, so we react differently to everything. Semen throws off our vaginas pH balance. Before I got VVS, I was able to have intercourse with no itching, no irritation etc. Now I have to use a boric acid suppository after intercourse each time otherwise I get irritated sometimes and sometimes I get itchy. As long as I use a suppository afterwards, then I am fine. I never reacted to semen before getting VVS. You have to use a process of elimination. If you are having yeast infections, then you shouldn't be having intercourse without a condom anyways. Even though men don't show signs like we do, we can pass the infection on to them and they pass it right back to us. Doctors are star |
