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CommentHappy and healthy new year to all of you and continued thanks for sharing your experiences on the vulvodynia guestbook.
CommentI have been suffering for over 10 years. Am at a point where I am considering surgery. At first I had days where I was normal and just had nsome days that were problematic. Now I suffer all the time. Took elavil and hydroxyzine all these years with only occasional releif. Now trying zoloft
CommentI was so excited to see all the entries in the guestbooks. I am shocked to see how many people have had all the same things I've had. I'm 31 and have been having the burning sensation for atleast 10 years that I can remember. Off and on, I'm lucky to say that I don't have it ALL the time, just close to my period, before and after and mostly in the mornings after I go pee. I don't know if I have the same thing or not, I don't have the exterior burning, only inside, like up to the second knuckle of the forefinger. This time it is very bad, I'm wondering if it is seasonal, I've burned nonstop since 4 days ago. The only relief has been mega dosing on Advil and also Uristat. It doesn't eliminate it completely, but it definitly relieves it a great deal. But boy, when that advil wears off, the burning sets right back in full throttle. It is absolutley one of the most debilitating things to have. I'm feeling relieved just to know that others have to go thru the same thing. I just saw my Dr. yesterday and they found white blood cells in my urine, we're still waiting for the results to the test, whether it is a UTI or not. Meanwhile they have diagnosed me with BV (bacterial vaginosis)I've looked this up on the internet and have found that I have zero of the symptoms involved w/BV, so here we go again with the wrong diagnosis. They have me on FLAGYL, which I am worried about, but I guess I'll take it and see what happens. If anyone knows anything that you think might be relevent to Flagyl and this disorder please let me know. I too have been through lots of Drs. looking for the answer. I've talked to others and friends and family and nobody I know has experienced this burning thing, itching yes, like w/ a yeast infection, but not the continuous burning. I hope and pray for all our sakes that they come up with something to relieve our pain. There has got to be some thing out there that would be a simple common sense pain reducer, some ph neutralizer or something, If they would devote more time and energy to this I'm sure they would find a cure. I'm sending some of these guestbook entries to my Dr first thing tomorrow. I wish I could come up with something to solve the problem, any ideas, feel free to e-mail me.
CommentI have been suffering from vestibulitis on and off forthe past 5 years. I have tried using allergy-free toilet paper, washing undergarments separately, etc., and still no change. Most recently, I am using Premarin, a topical cream, but results are minimal. I wish I knew what was causing this so I could change the behavior. If anyone has any suggestions, please help! My OBGYN suggested seeing a specialist if things don't change soon.
CommentMy name is Tracy, and I have been suffering from vulvar vestibulitis 4.5 years. It all started w/alternating yeast and bladder infections, then to various bacterial infections. I was treated w/various creams and antiobiotics. Then after about 2 years of various infections, I still had redness and burning. I was given various creams for the redness and pain w/ no success. I ended up having my 1st perineoplasty surgery in Aug. 97. It did not do a lot of good. I got married in Oct. 97 and got pregnant immediately. The vestibulitis stayed with me my entire pregnancy, and after I delivered in June 98, I experienced some relief from the pain especially during intercourse. I attributed this to my vaginal area being stretched from the delivery. I ended up having my second perineoplasty surgery in Feb. 99 at the U of W in Seattle by Dr. David Eschenbach (very excellent dr. in this area). This surgery proved to be more successful; however, I still have redness and irritation of the vulva. Does anyone have this same symptom? I have been given different creams to try along with anti-depressant medication, with no success. I don't understand why I still have the pain. I seem about 80-90% better where the surgery was, but I still have discomfort. Now after almost 3 years infection free, I have now developed another bacterial infection. I have tried 2 rounds of antibiotics with no success. I do not want to start the cycle over again. I need some suggestions on how to get balance in my vaginal area again? I have been eating yogurt, taking acidoliphis pills, etc. I would also love any feedback on what to do for my irritation and vestibulitis symptons. I am very grateful to have found others that understand what I am going through. I live in the Seattle area if anyone else knows of a local support group.
CommentI have sufferred from this very debilitating condition for over seven years. I burn right from my anus to my urethra. It has affected me emotionally as well as physically. I am currently on the low oxalate diet as well as taking calcium citrate; however, have not experienced as much relieft as I would like. I am finding my anal pain more debilitating than my vulvar pain, and I was wondering if anyone was experiencing the same pain, and if they found something that helped with the pain. My thoughts and prayers are with everyone who suffers from this horrible affliction
CommentLaurie, I have the same problem with anal irritation and pain. It feels very dry also. Unfortunately, I haven't found a solution yet. I've been putting vitamin e oil on there inbetween the 2 times a day that I put on the Estrace cream. I could use some suggestions myself. Sue
CommentLaurie, I too have vulvodynia. I had some anal burning and my gyno thought it might be from some hemorroids I didn't know I had. I used suppositories for the hemorroids and was careful not to put too much pressure there when sitting and it went away. This is just a thought for you to check out. Hope you feel better soon!
CommentDr. Glazer, What happened to the 10th guestbook? Ever since the new one has been started, the last one has disappeared. Anyone else w/this problem? Thanks
CommentI just want to say thank you for providing such wonderful information about vulvodynia. One of my biggest concerns with having it is that b/c of the infections that I keep getting I get pain in my groin area on the left side, and end up having to go to the dr every month to get treated for yet another infection. I wish that I would have had the knowledge about vulvodynia that I have now back in Sept of 1999 when I was finally diagnosed. I just wish that it wouldn't have taken 2 years to get an answer, but I'm happy that at least I have an answer now. I will just be so glad when the day comes that we get word of a cure for it. Please keep up the good work in getting the word out about vulvodynia to everyone around the world.
CommentI have been prescribed TRIMOVATE CREAM for vulvodynia. Have any of you heard of this and if so did it help or worsen the problem? I would be grateful for any comments.
CommentPam, are you talking about Temovate cream? I tried it at one point. It helped at first, but then caused more burning. I was later told by a different Dr. that it can THIN the skin rather than thicken it like estrogen cream. But some women find relief from it, so you may as well try it and see. Everybody responds to meds. differently. Good luck. Sue
CommentFor anyone trying to research this condition on you own, here are some Web resources I've found to be useful: National Vulvodynia Association: www.nva.org Vulvar Pain Foundation: www.vulvarpainfoundation.org Center for Vulvar Diseases, U of Michigan: www.med.umich.edu/obgyn/vulva/vulvedu.html Rowan's Resources: (list of oxalate content of foods, general useful info. and links): www.branwen.com/rowan Info. on Dr. St. Amand's guaifenesin treatment: www.guaidoc.com Julie's page (general info., links, medical articles and bibliography): www.vulvarpain.icomm.ca If you're in the United Kingdom: www.vul-pain.dircon.co.uk These are the best that I've found--I urge anyone looking for information to try them all! The amount of information (especially possible causes and reccomended treatments) can seem overwhelming at first, but don't believe the doctors who tell you that it's all in your head or that there is no cure. People ARE cured--it's just a matter of finding the right treatmetn FOR YOU. Because there seem to be numerous causes of vulvar pain, the same treatment doesn't work for everyone. Here are some of the major ones: 1) low oxalate diet 2) anti-depressants 3) topical estrogen 4) guaifenesin 5) physical therapy 6) diflucan/other chronic yeast treatments I hope this is useful to some people! --Katherine
CommentSUE, Many thanks for your reply. I live in England and I am assuming you live in America. I thought I would let you know that I contacted a Pharmacist today and she confirmed that TRIMOVATE and TEMOVATE cream are the SAME thing. Thanks again for your comments they were much appreciated. Best wishes to you Sue - perhaps we will speak again.
CommentPam, you're very welcome. Let me know if the Temovate works for you. Estrogen cream usually works well for me. I live in California. Sue
CommentThis message is for Lara. I was misdiagnosed with bacterial vaginosis and prescribed many types of treatment such as Flagyl. It was later determined by a different physician that I did have vulvodynia. I think you have done the right thing by looking into this diagnosis. I would express your concerns to your doctor since you feel that the symptoms do not match. I wish I would have not accepted that diagnosis as the answer. Some of the treatments can make things worse. Not to discredit your current physician but I think you should follow your gut reaction about the diagnosis. Good Luck!
CommentThis is for Pam....I was prescribed Tenovate cream by my gyn. doctor about a year and a half ago. It was absolutely horrible. It made the burning much, much worse. I had to put cold compresses on the area just to get rid of the effects of the Tenovate. I told the gyn about this, and she said it was probably too strong...but did not recommend anything in its place. She had also suggested Benadryl cream (I don't know what the English equivalent of this would be). It's basically an anti-allergy symptom cream. So, I tried it...same problem. It made the burning much, much worse. At the moment I am experiencing a symptom-free period, for reasons which elude me (but I will enjoy it just the same). I know that before too long, the burning and redness will return, and life will be hell once again. Also, I have noted in many entries that some women get frequent urination and terrible burning with urination. I get these symptoms as well. The other relevant thing would be that as a child (age 10 thru 12) I had problems with frequent urination and crystals in the urine...but no actual bladder or kidney infections. Hope this is of some help to someone out there. Pam, let me know how you make out, and best wishes to you.
CommentI just got back from another OB/GYN and he said that I have small tears on the vulvular area along with the hood of my clitoris. I keep getting them in the same area--has anyone else had this? I'm afraid that they are being caused by a STD but he says that he sees them all the time and I have nothing to worry about, but it is very sore. I read something about estrogen cream working to strengthen the skin, but my doctor refuses to prescribe it for me. Has anyone tried a homeopathic remedy similar to estrogen cream? Please answer here or e-mail me at yssit@ivillage.com
CommentThis is for Christie...I just read your entry, and I have had very small tears on the vulva and also around the clitoris. It only happened once or twice, and that was over a year and a half ago. My gyn thought it was being caused by herpes! She tested me for this, along with chlamydia, gonorrhea, AIDS and trichomoniasis, and all tests came back negative. I haven't had the tears since then, but I figured they were due to all of the irritation and intense burning, along with scratching so much because the itching was so bad. Another time, when I was diagnosed with a nonspecific bacterial infection, I actually had peeling in the entire vulvar area. This looked exactly like when you peel after a bad sunburn. It didn't hurt at all, but it was very bizarre. I hope this is of some help to you! Good luck.
CommentChristie (I think I e-mailed you before) and Regina - I too get those little cuts - but very sporadically and all my tests came back negative too. I have not been able to pinpoint what exactly causes them. my doctor has recommended estrogen cream and as soon as i finish treatment for the yeast infection i have now i am going to start using the cream. it is supposed to strengthen the skin but i think you have to use it consistently for a long time. Everyone - does anyone else ever get sporadically really itchy and irritated under the pubic hair area? any solutions? i hope we all find relief soon!
CommentI just wonder is there anything we can do to get research regarding what we have in the fore front? We have helped men with ED, which is what it is called now. They even advertise the help on T.V. There are so many of us out here what can we do to have our problem looked at seriously. I think about that all the time. Can we go to congress, isn't there anyone that studies this everyday. We as women are suffering from something that seems so unreal. How can we have something that has no cause, and no cure. I think that the doctors still think it is all in our heads. We take antidepressants they don't help. We have surgery that is not the answer, how barbaric to cut our vagainas apart. There has to be a cure. I read this site everyday. I have read all I can read, everything is the same nothing has evolved to any place that is helpful. We sit in this dark hole and get no where. Why? I get so angry sometimes but I just can't think of anything that I can do. Should we write to the big hospitals, to the drug companies? I don't have the medical expertise to do that. What would I say, we need someone that has a lot of medical pull in this country to stand up for us. We need a woman doctor to experience this (god forbid that this would come to anyone)so she can stand up and scream for research. Well I have vented, enough. All I have left to say, is thank god for my understanding husband. Please let someone come up with a cure, I cant' stand to see all of us trying the same stuff and nothing works. No meds no creams, and steroids should be banned from use on women with VV. It only makes it worse and we sure don't need to have that. I have just spent the last week suffering from what seems like a bladder infection and it isn't. If it was then the bactrim would help, but it doesn't. The only thing that helps is pyriduim. Thank god for that, at least it stops the burning and spasms. We didn't even use to have that. Well if anyone comes up with an idea on how to push the medical field to see us let me know I will be the first in line to help. If I think of something I will be right on it. Pray for a cure or even just some meds that really work. Lj
CommentLyn J: I agree with you that more research needs to be done to find a cure. Also, I hope that all the wives of Drs. who tell us this disease is in our heads end up with Vulvodynia and then we'll see what these Drs. have to say!!!!!!!!! I know that sounds mean, but I'm tired of suffering and not being taken seriously. Sue
CommentI forgot to mention in my previous post that I've written to other medical websites, newspapers, magazines, TV shows, etc about Vulvodynia and none of them have bothered to respond. It's VERY frustrating. A friend of mine suggested that I write a book about it, but I wouldn't know where to begin. Sue
CommentThis is the first time that I have visited this site. I have had vulvar vestibulitis since I was 14 or 15. Right now I'm 20 years old. As if college wasn't a big enough stress! Pam - I too am on Temovate cream. I use about a half inch of it and estrace cream at night. My Dr. recommends mixing them to prevent thinning of the skin. I am also on Cortifoam and 2 anti-depressants. The anti-depressants have helped to ease the discomfort, but nothing has helped much. I had a biopsy done, and it turns out that I have a rare skin disease called lichen planus. I have to get a vulvar vestibulectomy in March. I have heard many mixed things about this surgery and would like to know some thoughts on it. For those of who who don't have a skin disorder, another option to look at is the nerves that lead to your reproductive organs. A chiropractor would be a good start for that. You should be able to find some relief. For anyone who has had the vestibulectomy - is it too much to take 12 credits at the same time? Keep up faith!
CommentThank God! I think I finally know what is wrong with me. I have been going to the doctor for over a year with the burning and itching, pelvic pain, etc. I was treated with Flagyl which did nothing for me but make me sick. I plan to take this info straight to my next doctor's appt.!! I thought I was going crazy or maybe it was all in my head... Thank you for all the helpful information and I too will pray for a CURE very soon!!
CommentI was diagnosed with vulvodynia about a year ago - have tried antidepressants, Estrace, lidocaine, yeast drugs... NOTHING works! But my pain is only during intercourse - does anyone else have it limited to this as well? And if so, what do you do? I'm about to break up with my fiance because I don't see the point in getting married if the sexual relationship is nonexistent.
CommentI'm looking for a vulvodynia/VVS support group in SE Pa. Please e-mail me if one exists. Am astonished to find website and realize prevalence of vulvar disorders...and so few gyns knowledgeable! The hit-or-miss approach to treatment is expensive and discourages follow-through.
CommentHi, this is for Pam in England, where I am too. I'd be interested to hear who you went ot for help as the GYN I am seeing (referred by my GP) doesn't seem to know a great deal about VDynia. Also one word of caution. I went to the VPS website (based in the UK)hoping for some help and direction in November sending in a subscription to receive the newsletter etc. In spite of a follow up letter I have heard nothing, (though my cheque hasn't been cashed). There's no e-mail contact or phone number on the site and they're not responding to letters. The site itself is good though.
CommentDr. Glazer, I'm 22 years old, and I have Vestibulitis for about a year, but it was diagnosed 3 months ago. I'm trying a new low Oxalat diet, and it seems to be helpfil. Your web site is a greate help to women in my condition, since in Isreal there is not enough information, and even doctors cannot answer all my quastions. Thank you, Maayan.
CommentWhat is a low oxalate diet? I am ready to try just about anything!!! Have tried Ogen cream, estriol cream and now just relying on vaseline after each trip to the bathroom.. It works just as well as anything else I've tried and is a lot less expensive. Trips to the doctor are expensive and no solutions... SOMEONE TAKE THIS SERIOUSLY, PLEASE!!
CommentGood to have company, but I am sad to find so many women suffering without a "cure." In June, I developed a small bump beside my vagina; it, and the area around it are sore and burn almost all the time. it has been tested and scrutinized, everything negative. My latest specialist has diagnosed vulvodynia. I also experience uti symptoms, but my tests are negative. I also have genital herpes (have had for 19 years) and it has flared for the past 6 months too, but in an odd way. I am now wondering if it is not the herpes, but the vulvodynia. This is the weird symptom, and I would be so very grateful to know if anyone else has this condition: I have pain, burning and soreness in the pubic hair area. First one side of my pubic area will feel prickly and painful, it lasts 2-3 days and then the other side will start up. Nothing, except warm baths, seems to help. Since the herpes also uses nerve pathways, and there is PHN to consider (post herpetic neuralgia), I just cannot determine which it is. Sadly, neither has a cure. I have tried all the anti-virals, and they have not helped, which makes me suspect it is not the herpes (although in the past anti-virals have not helped much either). My usual outbreaks are sometimes in the pubic hair area, and feel the same, and I rarely get an actual lesion. I just don't know which it is, so I would really like to know if anyone else has experienced pubic hair pain. I am taking elavil and using Estrace and hoping for improvement. I am also going to see a homeopath next week, has anyone been helped by this?
CommentHelen, I get the burning in the pubic area also and don't know what it's from. I don't have herpes, just Vulvodynia. It's usually on the left side and I feel swollen at the same time. I haven't had it now for a couple of weeks. Anyway, you're not alone there. Hope you feel better soon. Sue
CommentFirst, Sue, thank you for responding. Does your pain in this area seem to come for a couple of days then go for a day then come back again?? I wonder how I am going to get to the bottom of the "pubic hair area pain." I just can't tell if it's the herpes or the other. Since neither has a cure, i am not so sure it matters! Secondly, has anyone out there had thesymptom that is causing my doc. to diagnose vulvodynia: I have a small bump with a few tiny tracking bumps near the entrance to my vagina. This is the area that causes continuous pain and burning. My gut tells me that if they just removed this bump (about 1/4" around) I would feel better (my doc says surgery is the very last option, which I understand, but we are talking about a very small area). No other areas of my vulva are in pain. My symptoms are the "bump" and the "pubic hair pain". Can anyone shed any light on all of this, please?? Look forward to any similar stories.
CommentSue, I read your post from 1/20/00 about writing a book. I do know of two wonderful doctors who ARE writing a book in which I will be used as a 'case study' in. I have been promoting them since the day I sat in their clinic in Boston, MA last October. Dr.'s Jennifer and Laura Berman of the Women's Sexual Health Clinic in Boston, MA are the two women that I am raving about. These ladies are making progress in the world of women's sexual health. If anyone would like any information on them, please feel free to contact me. After seeing numerous doctors and therapists and being diagnosed and treated with the wrong medications for 2 years, my husband and I finally were fed up with the bull. We drove 13 hours (from Ohio to Massachusetts) to see these two doctors. Since seeing them in October, my husband and I were treated with a yeast medication, I alone have taken Diflucan, and am currently using a Testosterone cream along with Premarin cream alternating them every night at bedtime. After seeing so many doctors for 2 years and being wrongly diagnosed, in 5 months (after going to Boston) I am overjoyed to say that I am now pain free!!! I haven't yet jumped the gun to say that I will be pain free forever (I am very much a pessimist) but I am hoping that under the care of these two women along with the creams, I will hopefully be able to live a 'normal' life again. It makes me angry to think that I will, most likely, have to use these creams for the rest of my life (I am only 23 years old) but it is a heck of a lot better than never being able to be intimate with my own husband. I will never stop visiting this website, even if I never have symptoms again. I can't tell everyone how this website has helped me get through this horrible ordeal...not to mention the low self-esteem and the depression that comes with it. I will keep praying that someday there IS a cure for this and that it will not go unoticed any longer!
CommentMy husband and I are trying to conceive and are worried about the lubrication that I am using. I am using astroglide and was wondering if this can affect his sperm. We have been trying for about 7 months with no luck. Is there some kind of lubrication that would be better? Please repond if anyone has any ideas. Thanks..
CommentStacey, from what I understand (according to my dr.) Astroglide is the best lubrication to be using and it will not affect the sperm in any way.
CommentFor the woman who was looking for more information on a low oxolate diet...check out the site for the Vulvar Pain Foundation. I am currently a member and I ordered all of the back issues of their newsletter. I have learned so much about this condition and all of the related issues. The VPF publishes a low oxalate cookbook which is relatively inexpensive. You can order it through them. http://www.vulvarpainfoundation.org/
CommentThis is for Helen...I, too, get little tiny bumps, along with one persistent area of redness, soreness and swelling, which sometimes appears as a bump, but sometimes appears only as a reddened area. The little bumps are tiny and red, only very, very slightly raised. They are all around the vaginal opening, but nowhere else. They tend to feel irritated and they burn at times. I get these when I am having a VVD flare-up. When I am in "remission", they completely disappear. Also I have noticed that my best times (i.e., symptom-free) are mid-cycle, usually just before and during ovulation. Some of my worst times are right before and about three-quarters of the way through my period. This tells me that part of VVD must be hormone-dependent. Also, does anyone else ever get soreness after intercourse? For me, it's almost like a bruised, battered feeling, and it can last up to two or three days after intercourse.
CommentHi Regina: I get the soreness, itching, burning and a papercut feeling after intercourse or even foreplay. Mine can last for days or weeks. It sucks!!!!! Having sex usually isn't worth the pain afterwards. I'm tired of not being spontaneous, having to run to take a hot bath afterwards and then worrying about having urinary urgency and frequency afterwards!!!!!!!!!! Sue
CommentAafter 3 years of constant yeast infection diagnosis' , vulvodynia seems to be the correct one. Though not as serious symptoms as some have, my current Dr. has prescribed a low oxalate diet and the use of a baby product called Balmex for restoring moisture., It has given some relief and I post this info hoping to help someone else.
CommentFor the woman looking for info on the low-oxalate diet, the Web site www.branwen.com/rowan has the diet information. I've found that some of the foods high in oxalate don't seem to bother me, while others consistently do. Not sure what that means... For the woman looking for a support group in Pennsylvania -- try contacting the Vulvar Pain Foundation to see if they have one. You may have to join to get the info.
CommentIt is a relief to know that I'm not the only person with this condition. I was diagnosed with vulvar vestipulitis about 4 years ago after battling yeast for an entire year. My OB/GYN sent me to a vulvar specialist and this specialist recommended the low oxalate diet, no yeast infection creams...oral antifugal medicine only(diflucan), rinsing with distilled water before and after urinination and amitrypilene(sp) an anitidepresant. Over time this seemed to help me and I finally went 3 years complelety yeast free. I still had an area that bothered me, but not a problem. Just recently I started all over again. I've been fighting yeast since October 99 and my other syptoms of buring and irritation have increased. I don't have the terrible pain that some women are complaining of....so I'm thankful it's not worse. It's still frustrating....it seems to take over your whole life. My husband and I cannot have a normal sex life. I'm hoping that if I am patient enough to keep up the routine my sypmtoms will subside! I am a christian and I know God has me in the situation for a reason. I am praying to Him daily for answers to this problem! Some of the other recommendations from the specialist was using liquid saop not bar soap, rinsing the area with DISTILLED water, the oxalate diet, toilet paper unsented with the least amount of lint(I use Northern), cotton underware, loose clothing and the antidepessant. Currently I am on Diflucan 100mg twice a day for five days, low oxalate diet, lots of vitamins. I'm praying this will clear things up! I'll be praying for all of you. Philippians 4:6
CommentI have been living with vulvodynia since 1992. I am 38 yrs. old and it began in my 8 month of pregnacy with my 2nd child. I went through all the doctors you can imagine, and eliminated everything under the sun, until 1994 when I researched and diagnosed myself with Vulvodynia, then I found a women Gyno. who knew somewhat of this disease. I educated this doctor with material I found in Medical Journals and material from The Vulvar Pain Foundation. I did not take part in any of the experiments, but I do pay dues once a year and receive The VulvarPain Foundation Newsletters, which allows me to stay current as possible with this disease. This is just a very brief explanation of what I went through for 2 full years. Since 1994 I have been on a low Oxolate diet and take 6 Citracal tabs (2 - 3x's a day) and 6 Ox-Absorb tabs (2 - 3x's a day with each meal). This seems to hold the burning at bay. If I go off the diet or skip the vitamins I feel it. For the first 3 years after starting this I would have relapes back to the way it was before and the relaps would last 1-2 weeks. Now relaps last only hours to 1 day, but still I am holding out for a Medical break through to cure this disease. If you can help me with anything further please email me back. Thank-you.
CommentI can't take it anymore. I have had this intense itching for 6 months now and I am going out of my mind. I've taken so many medications which all seem to make me drowsy, but no relief for the pain or itching. How are you able to deal with the pain for so long? This is draining me of all my energy. I cry myself to sleep almost every night. What a change from the first 10 years I spent with my husband! What can I do to take my mind off the incredible itching and burning? Is there any cream for relief of the itching? Help!
CommentI have suffered with vulvadynia for almost 3 years.l My burning is mostly in the labia, but it would move around to the rectum, and internally sometimes. I have been on the low oxalate diet for over 1 year and had little result. My doctor prescribed Neurontin which I take 300mg's twice daily. Recently, my doctor prescribed Effexor XR 37.5 mg's. It has made the biggest difference!!! I take the Effexor once a day. My burning actually got worse in the beginning, but after about 1 week I began to feel better. I don't have the chronic burning at all. I have to stay away from the high oxalate foods and drink lots of distilled water, but that usually takes care of it. I do feel sleepy at times, but I don't have the horrible burning. I have been on this regimen since December 19, 1999. I'm not sure why this particular medication has helped, but maybe because it is the time released type of Effexor. I had been on the regular Effexor 2 years ago, but I didn't have the same result. I pray that this might help another women suffering from this horrible condition. My family has been praying for me and I know that God hears our prayers. Keep the faith and keep searching for answers.
CommentI endured two years of the vulvodynia before finding something that finally worked to get rid of most of my pain. After two years my husband and I were finally able to make love with only minimal pain. Now that I feel a lot better, I have begun to consider trying to get pregant. We have a three year old. My vulvodynia started after my delivery. I am taking 75 mg of Elavil now. I know that I need to be off of the Elavil before I get pregnant. I am so scared once I stop taking it, sex will be too painful again. Has anyone out there stopped taking the med. to get pregnant? If so, did your pain worsen again while you were pregnant? Even if I do make it through another pregnancy, I am afraid that if I have another vaginal delivery, the epiosiotomy will never heal properly. I believe that it was mainly the epiosiotomy that started my nerves to go crazy and never shut off. My husband and I would like to have another child, but we're not sure if we are ready to chance me getting worse again and therefore putting us back where we started about three years ago. Does anyone have any info. for us? Please e-mail me if you do.
Commentjust wanted to write and encourage you all. i have suffered from vvs for about 3 years, and after peaking in pain, anxiety and depression, i now am feeling a lot better. my problem was exaccerbated by frequent yeast infections - every month i'd have one all month except for when i had my period. now i haven't had one for 2 months, thanks to my naturopath. i haven't found any medical treatment has worked but the naturopathic has been successful so far. in terms of pain i have been doing pelvic floor exercises using a vaginal probe - like the biofeedback but it is a manual type machine rather than electronic. six months ago i couldn't even tolerate a finger without a lot of pain, but now i hardly feel it, even two is ok. i haven't been able to tolerate intercourse yet but i feel more confident with the progress i have made that i will soon. my husband still wants me to "get better", and so do i, but i am so grateful that i have gotten this much better! hopefully this will be the year that it all goes away. it has been hard work, but i really encourage you all to not just stick to medical treatments - none have worked for me. for the yeast i took a medication called "parax", and had a no sugar/wheat/dairy diet. for the pain the pelvic floor exercises (essentially biofeedback), which i did with an excellent physiotherapist. it is worth exploring so-called alternative treatments, because you just don't know what'll work for you. may peace be with all of us.
CommentI have heard there is a hormonal connection in regard to VV. I have recently been told that I have polycystic ovarian syndrome. Is there any correlation between this and VV? I have heard that in the majority of women, VV spontaneously goes away at some point. Will the polycystic ovarian syndrome cause me to NOT be one these women?
CommentHi Ladies, Heather, one of the symptoms of Vulvar Vestibulitis Syndrome (VVS) is painful intercourse. Usually, that is the only symptom I have. I also take calcuim citrate daily to combat calcuim oxalate. The only food I have found that really bothers me a lot is chocolate. I know it's hard, I am with you all the way, I have been dealing with this for 10 years and I have been with the same man for ten years, through the rest of high school, through college and now my early career. It has almost ruined my relationship...I can't count the times. Just a week ago, I went to see Dr. Stanley Marinoff at the Center for Vulvovaginal Disorders in Washington DC. He told me that a vestibulectomy cured 85% of 200 women he has seen with VVS. I am considering it, but I am scared. Dr. Marinoff has been researching and treating women for longer than I have had VVS. He also writes articles for the NVA newsletter. So I don't know why I doubt his abilities or his suggestion... Has anyone had a vestibulectomy? I need some advice, please. Lori, what is polycystic ovarian syndrome? Please feel free to email me. Thanks a lot. Tammy
CommentI fortunately have not suffered like so many of you. I have had some pain for the past 8 months. I finally went to the doctor and was told that I had vulvodynia. I was put on a low oxalate diet, put on Diflucan, given vitamin b6, told to use oil and to continually rinse the area. Have any of the treatments worked for anyone? After reading thru the guest book it seems like I'm going to have this for years. Do any of these remedies work? How to you know if a particular food "triggers" you. I have a constant dulling pain and only tremendous pain when I attempt any physical contact with my husband. I'm really getting down, I don't understand how, why, or where do I go from here. Can anyone give me some advice/help? Right now I feel so overwhelmed and I don't know who to turn to. Thanks!
CommentI cannot tell you the relief I feel after reading about others with vulvodynia. I thought I was the only one with this condition, and was convinced (and I think my Dr was too) that it was all in my head. I am 51 years old and have suffered with this condition for 3 years. It followed on from a bad yeast infection. After many many visits to my family physician and GYN, changing family physicians (no better), being under the care of a dermatologist for almost a year with different creams (mostly steroids, which I now know is the worst possibly treatment), antifungals, etc., I tried homeopathic treatment, but with no relief there either. I then returned to my GYN in desperation and last April had laser ablation to the vulval area. It was very painful but when it healed eventually I had relief for about 6 months, then it all started again. I now understand that the laser treatment destroyed all the nerve endings in the area and that gave the relief, but the nerve endings regenerate and now I'm back to Square One! The area that bothers me most is on one side of the vulva only, about an inch wide and about 2 inches longer, on the borderline of the pubic hair. Before the laser treatment I had a few small blood "blisters" in that area and a prominent blood vessel, but the laser ablated the "blisters" and now I only have the prominent vein (just near the surface of the skin, but not raised). For 3 years I had no name given to my condition (from any of the 5 doctors I consulted), until a recent overseas business trip when I was in such agony that I had to consult a GYN in a foreign country (my GYN at home had put me back onto cortisone cream when my flare-up started in Dec. again, but it wasn't helping anyway). This foreign GYN put a name to my "problem" immediately, and I was at last able to find these websites and get more information and reassurance that I was not going insane. It was a tremendous relief. I have stayed away from my GYN as I have no faith in him anymore, and my family physician seems to be trying a little harder to understand me and my problem since I've given him all the info I printed off of the Internet. He admitted that he had never had a patient with vulvodynia before, and had only heard the term referred to once before at a medical conference, but knew nothing else about it! On reading all the material I gave him, he thought that it may be worth trying accupuncture, as there are indications that it is nerve-ending related. I have had 2 sessions of accupuncture (the accupuncturist said I am the second woman he has treated with vulvodynia and the first one was "cured"!), and think I have had some relief, but maybe it's wishful thinking??? I will continue with the accupuncture for awhile and see if there's any more relief. Luckily I have a loving, understanding and supportive husband (of 28 years), otherwise I think I would've gone crazy. I have tried all the self-help suggestions in the past 3 years (cotton underwear and loose clothing, no jeans, no soap, washing underwear in boiling water only with no detergents, rinsing and drying the area with a hairdryer after urination, aloe vera, etc.). In addition to the accupuncture, I am using Vitamin E oil 5-6 times a day and taking antioxidents. I am about to read up on the low oxalate diet and will try that as well. I am joining the VPF to get their newsletters. Does anyone have any other suggestions or am I doing all I can for myself this way? I would be grateful for any help or recommendations. I would also like to stress how comforting it has been to know that I am not alone, and am not psychotic. To all of you I offer my sympathy and love. May a cure be found and may we all find the support and help we need to get us through this. Thank you for listening.
CommentI suffered from vulvodynia for the entire 6 years before my son was born. Itching, buring and painful intercourse. Nothing helped. When I got pregnant, it disappeared completely! I couldn't figure it out but was so grateful. Life was good again! I had a very rough vaginal delivery and I figured that it would come back with a vengence. It still was gone. I was thrilled! After 10 months my period returned (due to breastfeeding) and boom! The burning and painful intercourse and itching returned. I figured it must be something with my period. I had done a lot of research on disposible diapers for my son and found out they have very dangerous/irritating chemicals in them. I began to wonder if my sanitary napkins had the same chemicals in them...and YES they do. Dioxin. Since I was using cloth for my son, I decided to try cloth menstrual products.In 7 months, I have had ONLY TWO MINOR INCIDENTS SINCE SWITCHING TO CLOTH. I don't have any scientific proof. I'm assuming I'm allergic to the chemicals in sanitary napkins. I just wanted to share with you some relief that I've found. Maybe it will help someone. It is worth a try. Please write me if I can help you. I'm sure my vulvodynia is not gone forever, but it is about 95% improved.
CommentFollowing on from my long story above, I forgot to add that I have had 2 biopsies of the affected area, one showing "non specific allergic reaction" and the other "possible lichen sclerosis". However, I do not have the classic symptoms of lichen sclerosis. Has anyone else had a similar diagnosis, and if so, were any recommendations given as to treatment? Thank you.
CommentDina, Yes I was diagnosed with lichen simplex chronicus. Which sent me to a dermatologist who put me on very strong steroids. That was hell, I went from a painful yeast infection feeling to burning and stinging so bad I could not sit down. I just don't know what to think anymore. I can't imagine my life this way forever. I just can't. I too stopped using regular pads and tampons and switched like one of the others to or maybe it was you, I don't know to all cotton. It helps but not to the point of getting rid of the pain altogether. I even bath with only baking soda and wash my hair in the tub. I never let chemicals touch my vagina. I don't think anything helps. Just to go to the bathroom and wipe it burns afterwards like the skin has been hurt and there is nerve injury. I just don't understand this. I keep seeing these damn commericals for mens erectile problems, well we women want some pleasure too. We have a problem who will listen to us? I have tried PT too, I wanted it to help so I kept saying it was helping but really it never did. I can't imagine these doctors cutting our flesh off and thinking that will help. I wonder in the past did they cut off mens penises when they could not get an erections. NO. Sorry I read these letters and it tears me apart and I hear these women beg for help from each other and there is no help. Here take a pill or let me cut you, these choices are not the answer. I would think that these doctors that are so knife happy would see that pretty fast. Has it helped anyone for longer then a year till the nerve endings get better? I just wonder, do we hear from anyone that the biofeedback that helped, or is that just a hoax too. I appreciate the fact that someone is at least trying but it isn't enough. Not till we get a cure it will never be enough. Lyn j
CommentFinally, I find people who are going through a similar situation as me. I'm 24 years old and have been suffering with vulvar vestibulitis/vulvodynia for over 3 yrs. My condition started when I went to Acapulco, Mexico. I had pain free intercourse before I left for my trip. When I returned I had intense burning and pain upon intercourse. I eventually went to the Dr. and found out I had a yeast and a bacterial infection. I'm one of the few who had a Dr. say that the pain was called vulvar vestibulitis at the first visit. But, I was told that after the infections cleared up I would "be better". Well, 3 long years later I still have it. I never had a single vaginal infection before this, now I get them all the time, or I feel like I have one all the time! For some lucky reason I have a wonderful man in my life who has been with me since the beginning. We are even talking marriage this next year. I have been through creams, Amaryl (with the thought that HPV was the cause) anti-depressants, steroid injections, neurontin, etc... I feel that surgery is the only thing left to try, but I do not want to do it because I hear of all the horror stories. Thank-you for allowing me to communicate and vent to people like me. Many tears have been shed over this.
CommentI have had generalized vulva pain for the past 7 years. Tric-cyclic anti-depressants helped a bit, but I have trouble with the side-effects. Biofeedback with the Glazer technique has helped ( I was treated by Dr. Libby Edwards in Charlotte, NC), but not gotten me beyond a constant pain level of 3 (1-10 scale) I am currently doing Reike, (energy work), but so far feel this has made the area a little swollen and therefore a little worse. Does anyone have experience with this? I have done accupuncture with 2 practitioners, but the only improvement was that my period temporarily went back closer to the 28 days that I had always had. Sometime since the vulvodynia started my period happened every 24 days! My most recent period was 28 days which I attribute to the Reike. I am 41 and would like to get pregnant. I would appreciate hearing from anyone with generalized vulvadynia who has gone through a pregnancy. Thanks
CommentI am 28 yrs old and from the UK. I have been suffering for eleven years. The first five years I was treated for numerous yeast infections (that were never there). I can remember curling up in my bed, at seventeen, sobbing because one of the creams stung so badly - then I was told that I 'wasn't helping myself' when I refused to use that cream again. I was finally diagnosed as having vestibulitis six years ago and given xylocaine and a steroid cream. Fortunately I have a wonderful husband who has always 'tolerated' my reluctance to be intimate, but who now - after reading some of these pages - truly understands the pain both physical and mental. But it is a strain on the relationship. I feel dysfunctional as a woman and a failure as a wife - that makes me very hard to live with sometimes. After reading some of your messages I decided to go back to my doctor. He has prescribed me the lowest dose of amitriptyline possible - as a 'last resort'. He actually shrugged his shoulders as if to say: it's your problem, deal with it. Thanks doc. Thank goodness the US is taking the problem more seriously - and with web sites like this I can keep informed. I am saddened that so many women are suffering, but relieved that I am not crying alone and, most of all, IT IS NOT ALL IN MY HEAD. Thankyou all for your time. xxx
CommentI would like to talk to anyone who has taken amitriptyline while breastfeeding. I am starting this medication today and have found conflicting information on its effect on a breastfed baby. My daughter is one year old but still nurses quite often (3 - 4 big feeds mostly at night). PLEASE, PLEASE E-MAIL ME AT LUCRETIAROCK@MYBC.COM. I don't check this guestbook very often so please use my e-mail address.
CommentI have struggled with vulvodynia for 16 years. I am 34, been married for 8 years, and have recently started my latest round of treatment. My doctor is my sister-in-law and she has brushed me off before by saying my pain was "all in my head" or "maybe something is going wrong with you and your husband". I went to another doctor who treated me for HPV and made me us that terrible stuff that burned like hell. In 1995, my doctor did a vestibulectomy but the pain didn't get any better. Over time, I've had pain-free sex and painful sex. It was hard to predict. It definitely has affected my marriage to the point where most of the time now, I try to avoid sex. Anyway, faced with the demise of my marriage and my self-esteem, I decided to try again and demanded that I be heard. She has since put me on Elavil (100mg a day) and she's referred me to a physical therapist who will be doing biofeedback. One of the characteristics of this disease is an overly taught pelvic floor muscle. At our first appointment, my PT told me my pelvic floor muscle was weak. Has anybody out there ever heard of this? I have exercises that I'm doing to help strengthen the muscle, and I'm going to try the low oxalate diet. Any thoughts about these issues would be appreciated. I'm so glad to have someone validate my pain and not dismiss me by telling me there is nothing that can be done for me.
CommentI'm at work and I do not have a private e-mail at home yet so I do not want to leave my e-mail address, but I was wondering if anyone out there has consulted with a Dr. Jessica Thomason from Milwaulkee, WI. And if you did or do, have you had good results. I've been thinking of seeing her but it would be a 6hr. drive each way to see her, so it would be a big committment to follow through with it. I've been through so many Dr's. that I want to pick my next one wisely. I would appreciate any kind of feedback out there from anyone who knows of her or has seen her. Thanks
Commentrebecca
Commentrebecca I saw Dr. Thomason 15 yrs ago- before doctors seemed to know about vulvodynia or vestibulitis. Although she was not able to help me then, she was the first dr who took my complaints seriously. I found her very knowledgeable and extremely empathetic. Shortly after I started seeing her she moved to Milwaukee and I stopped seeing her. I know this is not much help but I do want you to know I thought very highly of her. My own symptoms abated for a long time but did come back awhile ago and I have considered going back to see her. If you do decide to see her I would appreciate an e-mail telling me what treatments she is using now. Thanks lisa
CommentRebecca and Lisa, I am currently seeing Dr. Thomason and if you'd like to e-mail me at the above address, I'd be more than happy to fill you in on my experience with her and her staff up to this point. They're wonderful people. Kim
CommentI was diagnosed with Vulvodynia about 1 year ago.. I am now pregnant with our first child ( which is a miracle because me and my husband never have sex) I have mentioned to my OB/GYN that I have this disease and he seemed to act like it was no big deal. I have heard that giving birth Vaginally can cause this condition to worsen, I can not imagine having more pain than I already do. Does anyone know anything about this.. and maybe a way that I can approach my doctor about this. PLEASE HELP.
CommentThis is for Jennifer who was looking for a Dr. in the San Fran area back in October . . . I just saw a Dr. Amy Huibinhoa at the Alta Bates medical center. She diagnosed me with Vulvar Vestibulitis and refered me to the Psysiotherapy Associates who do therapy for pelvic floor disfunction and are apparantly very knowledgeable on this subject. You can reach the physiotherapy associates at (415) 346 1611. Does anyone know of any other bay area doctors that can help with vulvar vrstibulitis?? Help much appreciated!!!!
CommentDr Glazer please put the 10th guestbook back online. These entries contain important advice and info that can help us. Please, do this! Thank you.
CommentI don't know where to begin! I'm just glad to know I'm not alone! I have tried so many things this past year, many of them mentioned in the above guestbooks. My next step is the low oxalate diet. My obgyn wants to send me to Mayo, but, not sure that will help! They suggested cordizone shots to the area. Boy, that was a trip! It made me worse! I have also been on yeast free diet for 10 months, which has not helped. I am 53 years old and thank God everyday for my husband of 30 years. He understands my pain and even though I know sex is important to him, he has been great! Anyone out there have pain that goes up the towards the spine and it feels almost like a bruse when putting pressure, like sitting or lying down. When the vaginal area is at its worse, so is the "pain in the butt"! Take care all you VV people out there and thanks for listening.
CommentIt is so good to hear from so many other women who are experiencing some of the same problems. I have been married for 39 years and always had a very good sexual relationship. I developed vulvodynia in May of 1998 following surgery for some abnormalities of the cervix. I was diagnosed with vulvodynia in Sept of l998. The Dr. prescribed a topical anthestic cream to use during intercourse. This worked fairly well. I took paxil for two weeks, but couldn't tolerate the side effect. I have had diabetes for the past 17 years, and fibromyalgia and bronchiectasis for the past 5. In August of l999, I fell stradle of a hog panel. For those of you non farm people, this is a panel consisting of vertical and horizonal ridgid wires. I completely lacerated the entire area. I went to the the emergency room and was stitched in the entire area. The pain for the vulvodynia was less in a matter of hours. The Drs aren't sure if it will come back, but to date THERE IS NO PAIN. I don't think that I would have the nerve to try it again--but it worked for me. Hang in there and don't lose heart.
CommentI'm back again. Thank you for your entries. There are so many of us who suffer in silence. It's nice to know I'm not alone. I have been fighting chronic yeast infections, went on a low oxalate diet, taking antidrepressants and used just about every cream and jelly out there. I have had actual blisters/ulcers form on my clitoris. Ouch! That's painful. My doctor says it's because my skin is so sensitive. I've been tested for Herpes twice and they have come back negative. Has anyone experienced this and how was it treated? Please e-mail.
CommentThe survey I just took was kind of hard to do as I am taking a pain tablet called, oxycodone-5mg. I take 2-3 during the day and l hour before intercourse I take 2 of them. I answered the questions as to what I was like without the oxycodone. I have never been diagnosed with any type of name. My gynecologist has no idea as to why it hurts me so much. He thinks it has to do with my lack of hormones. I use vaginal Estrace. 1mg. everyother night. I also have inerstitual-cystitis and that also was thought to be part of the blame, as well as my sexual problems in the past. I also take 30mg. of Paxil and 15mg. day/night Buspar. Even with taking the oxycodone I still have the sharp knife like shooting pains in my vagina and abdomen. It is at least, tolerable and I am able to have orgasims. My husband is a very patient man and he is the only man I have had orgasims with. I have always had pain with intercourse. The last 10 years have been the worse, however. Sometimes I thought I just couldn't take it anymore. I would stay up, at night, until I knew my husband was sleeping. Just so we wouldn't have intercourse. At that time it was 2 times/month and then I didn't even want it that much. Now with the oxycodone, we are able to have intercourse about 2 times/week. Even though it takes 10 minutes just for him to enter completely into my vagina, I am at least able to somewhat enjoy it. I really thought something was wrong in my mind with this problem. My friend gave me an article in the Womens Day magazine which talked about it. I have always done the Kegel exercises and was proud of how tight I could squeeze. Little did I know that I was hurting myself instead. I have no idea of how to turn the clock backwards and hope that you can give me some advise. How should I approach my doctor with this information or is there something you could email me to give to him? With the problem of the cystitis I have is there anyway to help me? Also, I have a continent ileostomy. I have had that for 22yrs. 24 years ago, I was diagnoised with Ulcerative Colitis. I had it under control until I became pregnant. At 2mth. into my pregnancy I ended in intensive care and 20 lbs. lighter and had to have my large intestine removed. After my daughter was born I went to Cleveland Clinic and had my rectum removed and they made a pouch with part of my small intestine. I have been happy with the results. Please email me with any advise you could give me. Thank you, I hope that I can get relief of the pain. At least during intercourse. I don't think people could really ever understand the PAIN one goes through with this. Tena Summerville 1228 Grant Avenue Erie, Pa 16505 Email Add: tesumm@juno.com Please Help Me!
CommentThe survey I just took was kind of hard to do as I am taking a pain tablet called, oxycodone-5mg. I take 2-3 during the day and l hour before intercourse I take 2 of them. I answered the questions as to what I was like without the oxycodone. I have never been diagnosed with any type of name. My gynecologist has no idea as to why it hurts me so much. He thinks it has to do with my lack of hormones. I use vaginal Estrace. 1mg. everyother night. I also have inerstitual-cystitis and that also was thought to be part of the blame, as well as my sexual problems in the past. I also take 30mg. of Paxil and 15mg. day/night Buspar. Even with taking the oxycodone I still have the sharp knife like shooting pains in my vagina and abdomen. It is at least, tolerable and I am able to have orgasims. My husband is a very patient man and he is the only man I have had orgasims with. I have always had pain with intercourse. The last 10 years have been the worse, however. Sometimes I thought I just couldn't take it anymore. I would stay up, at night, until I knew my husband was sleeping. Just so we wouldn't have intercourse. At that time it was 2 times/month and then I didn't even want it that much. Now with the oxycodone, we are able to have intercourse about 2 times/week. Even though it takes 10 minutes just for him to enter completely into my vagina, I am at least able to somewhat enjoy it. I really thought something was wrong in my mind with this problem. My friend gave me an article in the Womens Day magazine which talked about it. I have always done the Kegel exercises and was proud of how tight I could squeeze. Little did I know that I was hurting myself instead. I have no idea of how to turn the clock backwards and hope that you can give me some advise. How should I approach my doctor with this information or is there something you could email me to give to him? With the problem of the cystitis I have is there anyway to help me? Also, I have a continent ileostomy. I have had that for 22yrs. 24 years ago, I was diagnoised with Ulcerative Colitis. I had it under control until I became pregnant. At 2mth. into my pregnancy I ended in intensive care and 20 lbs. lighter and had to have my large intestine removed. After my daughter was born I went to Cleveland Clinic and had my rectum removed and they made a pouch with part of my small intestine. I have been happy with the results. Please email me with any advise you could give me. Thank you, I hope that I can get relief of the pain. At least during intercourse. I don't think people could really ever understand the PAIN one goes through with this. Tena Summerville Email Add: tesumm@juno.com Please Help Me!
Comment
CommentHi everyone. I am relieved, yet confused after finding out that I have Vulvar Vestibulitis. I was finally diagnosed about 2 months ago by a gynocologist, though I have been having symptoms for about 5 months. Currently, I am on a low oxalyate diet and my gyno prescribed a topical cortisone cream called elocon. It is not helping. I was taking n-acetyl glucosamine and msm with some results. Unfortunately, I think that I was allergic to one of them. I wound up in the emergency room with chronic stiffness in my legs, arms, and vaginal area with strange muscle twitching. I would like to know if anyone else has experienced pain and cramping in the legs. I have figured that maybe it was an allergic reaction to one of the supplements because I did not have these symptoms until about after 1 1/2 weeks of taking them. The twitching and pain goes all the way to my toes. It is most chronic in the back on my legs in the area where I sit. I feel very alone with this whole thing and have found it very hard to accept it. Sex with my boyfriend is very painful, lucky he is very patient and understanding. I feel guilty sometimes that he is with me, due to the fact that we cannot have sex often. I am scared that if we ever break up nobody else could possibly love me with this condition. Does anyone else feel this way. Currently, I see a therapist to help me with these insecurities and the loneliness I feel in this. I am 26 and live in Los Angeles. Does anybody have any advice for me, or know of any doctors who specialize in vulvar vestibulites here in LA? Or physical therapists here who specialize in biofeedback? Even if you do not know anyone in LA, please write me and let me know what works for you. I would really like to talk to others with this condition. I feel very alone and depressed, but I will never give up! Please help. Thank You, Tracie
CommentI suffer from vulvar vestibulitis and lichen schlerosis. The lichen is what causes the burning and itching. I was on Estrace cream, Temovate cream, Zoloft, and Trazodone. I have had this since January 1999. The medications worked for me, but didn't cure it. I was told about a great doctor in Milwaukee, Wisconsin. I had to have the surgery called vulvar vestibulectomy about 6 weeks ago. I am very positive about the outcome. There is no pain, and it is suppose to get even better as I heal from the surgery. I would strongly recommend calling this doctor and see what she can do for you. You may not even need the surgery. Medication may do the trick. If you are interested in the doctor's name please e-mail me and I will tell you a little more about it. There is relief out there.
CommentRebecca, I am currently seeing Dr. Jessica Love Thomason. She is a very good doctor. I have been seeing her since September, and she tries her best to make me feel more comfortabe. I am so relieved to hear of someone having heard of her. I have to get surgery on February 29th, and I didn't know what to think. E-mail me if you'd like to know more.
CommentI am at work and I do not have e-mail at home. I have burning and soreness in the vulvar and rectal area for 1 year and 4 months now. It all started in October of 98. I thought I had a yeast infection and my gyn prescribed medicine over the phone. When the burning and discomfort did not go away I went in for a check up. Of course he found nothing at all wrong with me and gave me some cream. I have had so many in the past year and none of them worked. If anything they just made it worse. I have been to the gyn about 11 times, a dermatologist, my family doctor and an allergist. I have had std tests, 3 blood tests, urine tests etc. The last doctor I saw (allergist) thinks it is the shingles. I did have shingles when I was 25. It was from stress. I was very stressed when this started as well. (Started new job, planning wedding and bought a new house) My mom also said that I had the chicken pox very bad in the vaginal area. Shingles can cause post herpetic neuralgia of a nerve, so it makes some sense anyway. The acyclovir is making a difference. I have been feeling some relief. Some days I feel fine. Some days it is very uncomfortable to sit at my desk at work. I have also had antibiotics, antidepressants, many creams , every vitamin under the sun and I try to avoid high oxalate foods. I get scared to eat certain things. I do not use soap, only dove everywhere else. I use Northern toilet paper, which does make a difference. I wash all my cotton underwear separately in hot water without soap on a double rinse cycle. I hang them to dry. It has been an awful year. I got married in June of 99. My husband has been better than great about this ordeal. I feel like I have been on an emotional rollercoaster. Some days I feel so hopefull. Then others I just cry and wonder why? I am going to be 28 next week. I feel like my life has been totally taken over by this horrible disease. I am sure you all know how I feel. I also get angry because doctors do not know. I will write again soon. Good Luck to you all.
CommentIn reference to Vernie's note... I also tried a yeast free diet for 2-3 months along with using oral nystatin and nystatin cream which are antifungals. These did not make a noticeable difference. However, the nystatin cream does sometimes make the area feel better. I notice that I sometimes have brown spots on the tops of my inner thighs and the cream will take this away. Does anyone know what these spots may indicate....lichen sclerosis? In regard to pain up your spine, this sounds to me like it would be nerve related and that you may want to explore biofeedback.
CommentIt's been a while since my last entry and I just finished reading the 11th guestbook entries. I feel so sad for all of those who have either been misdiagnosed, recently diagnosed or have as of yet, not found any treatment plan at all. As some of you may have read in my past entries, I have been in pain since June of 1999 and have sought an infinate number of treatments from an infinate number of doctors of varying specialties. Thus far, I have not been cured but am quite certain that good days are possible. I have vulvodynia/Pudendal neuralgia and my pain migrates from vulva/urethra to the rectum/anus and coccyx areas. Constipation or gas has consistently brought about increased pain and almost always resides in the rectum. I take flaxeed each morning and place about a teablespoon in my oatmeal or cereal though I've heard of others who mix it into juice or water. It is supposed to keep the fibre content in my system high and it's natural. I had tried Colace(stool softener) for a while but am concerned about becoming dependent on artificial stimulants. We all have enough DRUGS in our systems as it is! I have recently started P.T. with an extremely knowledgeable and caring woman here in S. Florida. My initial consultation/exam was a disaster as her internal evaluation caused a SEVERE flare up and I had regressed in symptoms after that. Ever since, we have focused on myofacial massage, gentle exercises to open the pelvic and hip flexor areas, as well as magnetic, deep heating treatments. Christine reminds me that we have WORK to do and that my pelvic floor is beyond spasm....it's in a complete contraction and is not even moving at all. I look forward to my visits with her, knowing that we have a goal and that she truly understands the fear and apprehension I express in our sessions. I am sorry that there are so few possibilities in terms of us being able to find information and/or hope in our struggle to be heard and for us to maintain hope. I too, have benefitted from the guestbook and can recall my initial reaction to reading the very first entry in the guestbook and feeling complete horror, wanting to DIE and end my misery. I've been through so much in my life and have never felt so disheartened and hopeless until that day/evening. Many days and nights have passed since that time. So many of you have had so many more years of pain to contend with and your families should be credited with having stood by you all of these years. I don't know how I could deal with a spouse or mother who complains, cries, worries and is so angry at LIFE for ROBBING them of the happiness we SHOULD be feeling ...just because....I am about to go onto a higher dose of Effexor sr tonight.150mg. from 75 and will continue taking the 75 Desipramine. I apply Moisturel to the area after each time I void, use unscented goats milk soap and have actually experienced several good days up until a few weeks ago. Perhaps the higher dose of Effexor will bring me back. These are the first meds that do not have any side effects and I'll continue until......who knows? The libraries do not have books on the subject, the gynos. only know some of what we need to know and the bookstores have zero information(of value) for any of us. I have been compiling letters and notes from women around the country and beyond and am inspired to compile a book that could provide women like you and I the validation and hope we DESERVE. If anyone is interested in sending me their story,including both the positive and negative experiences related to treatment and your personal reflections and feelings, I would be willing to present a rough draft..(.with each submission that includes permission to use your story in the event this should come to fruition), and use proceeds to further research in Vulvodynia/pelvic pain arenas. Any suggestions, comments will be wonderful. I am not a writer though I enjoy writing for therepeutic and personal purposes. I have a Masters degree in Marriage and family therapy and have a particular interest in presenting the EMOTIONAL aspects that are and have been affecting women with this problem. I think that dr. Glazer's article in the last NVA newsletter provided many of us with the realization that Vulvar pain is much greater than simply a PHYSICAL entity....we need our lives back; sex, intimacy, friendship, social contacts...the ability to SIT and talk, watch a movie, go out to dinner. I look forward to hearing from anyone who wants to respond to my letter. Your input is invaluable. Writing has also been proven to be highly therepeutic for people in expressing feelings etc... related to traumas of varying etiology. Simply writing to friends I have met through these sites, has helped me cope with the daily obstacles and fears associated with the Vulvodynia. Thank you to everyone I have met thus far and I welcome my future friends to my e mail address. I will provide my home address to those who chose not to send information on the internet and will gladly respond to any mail I receive from you in the mail. Good luck to each and everyone of you. You are all trying to the best of your abilities. Focus on your strengths and be grateful that most of us have the ability to SEE, WALK,TALK and FEEL so much compassion for one another.
CommentDr Glazer please it is possible to put 10th guestbook back online. 10th guestbook contains the list ( with adresses and phones) of Clinics for Vulvar Desease in USA and Europe. I need the "Europe list". thanks.
CommentTo Jan: Thanks, I have been thinking about biofeedback for pain. I will have to do my homework and find someone in my area. I am also on Amitriptyline for the nerve pain. If nothing else, it helps me sleep. The only after affects to me is groggyness in the am, but soon goes away once I am up and at'um. A nurse friend of mine suggested Calamine Lotion and actually it helps sooth and cool. It's no cure, but helps for the moment and can be used often. I carry it with me everywhere. My husband and I have decided that when I am really stressed, I seem to get worse, so maybe the Amitriptyline will help there too. Here's hoping for all of you, some good days! Vernie
CommentHere is a website of Vulvar specialists around the world. http://www.med.umich.edu/whrc/vulvar2.html
CommentHere is a website of Vulvar specialists around the world. http://www.med.umich.edu/whrc/vulvar2.html
CommentMy husband and I have been dealing with my symptoms of vulvodynia for most of our 1 year and 4 month marriage. I mistakenly thought it was all in my head, since the pain was usually just when attempting sex. I kept thinking that it would go away. But two months ago, making love became so painful that we quit altogether. My normally high sex drive disappeared and just the idea of sex would make me sick to my stomach. I finally decided to do some research on painful sex and found this site. I went to a doctor yesterday at a women's clinic here in Eugene, Oregon. I told her that I was wondering if I had vulvodynia. She examined me (OUCH!) and confirmed it. She put me on Lidocaine and hydrocortisone, telling me if that doesn't work she might try a steroid cream and/or Elavil. She has had good results with Elavil on a patient much worse off than I. I tried the lidocaine before sex today and sex was probably 80% better although I am now sore because the lidocaine wore off. I am going to keep up the search for things to help the cause and not just the symptoms of the pain. Any advice on how to deal with all the psychological stress would be helpful. A big thanks to all of you on this site. If it wasn't for you , I might still think I was imagining everything! Feel free to email me. Any advice is welcome!
CommentIt all started around 5 months ago. I began to itch so I was treated for a yeast infection then when that didn't work I was treated for vaginosis,.then another yeast infection cream, by this point I couldn't wear underwear, have sex and walk even sometimes. I was depressed ,stressed out and alone. My relationship with my fiance was going downhill also.He just couldn't understand what was wrong. About 2 months ago my Dr. gave me a paper on vulvodynia and told me to stay away from the foods on this list. I am doing so at this moment but I'm still in lots of pain! Now its not just an itching , its also a burning sensation. What am I going to do? This has changed me horriably. I cry constantly. I have so many questions and no one to answer them. Can ayone help me? I also have stayed away from everything on that list and now I'm run down because there seems there is nothing I can eat. Today is Wednesday and Friday I have another app, with my dr. what should I ask for , for some painfree days. This is taking its toll on me and my family. I pray and hope for a cure for every person who goes through this pain. Please anyone with any answers and knows of any Dr. in Iowa who specializes in this please write back. Thanks- daisey23
CommentHI! I have had vulvodynia for 10 years. I had some good years and some horrible ones. I was thinking about trying Neurotin. A friend used it for nerve pain and it worked for her. Can you give me any information on this drug and its effectiveness with vulvodynia? Please I am really in need for something to work. Thank you for your help!
CommentI have finally after 5 long years been diagnosed with this condition. My obgyn has started me on the antidepressant, oral diflucan for 7 days, vaginal yeast cream for 7 days and a topical antifungal for the outside. I have read alot of entries and am really relieved and saddened on how many of us have had to suffer so long and to only find that there is no cure??? YET!!!!!! I am going to try thr diet and look for a physiotherapist and try the bio-feedback therapy. My symptoms have been the constant burning, occasional itching, raw and hot. Before I was diagnosed I used replense moisture inserts and found that if I used those everyday or every three days, basically constantly, I found the pain would go away or would be bareable enough that your vagina was not on your mind 24/7 ha! ha! No laughing matter I know but I would rather have other things on my mind than the constant pain. If you guys know what I mean!!!!! I also have had chronic yeast infection symptoms although the tests were neg. and have had a constant battle with uti's tests were also neg. The only thing I found to take away the funny feeling in the urinary tract was AZO or Uristat. However, I am going to the urologist to be checked for cystitis which can also be in combo to this condition. WONDERFUL!!!!!! As for my husband, he is understanding to the point that we don't base our relationship by how much sex you get a week! ha! ha! God bless his heart. With this painful conditions he's happy if it is not longer than three months. Poor thing! It is stressful enough not to feel normal. Meaning spontaneous, trying NEW things etc. I'm thankful now I can vent to bending ears who share the same diagnosis. LAUGHTER IS THE BEST MEDICINE FOR WHAT AILS YOU!!!! So if we all stay together we WILL HOPEFULLY find a cure. Thanks for listening. Feel free to e-mail me anytime. I'm a first learner so I could use the support and advice anyone could give.
CommentThis message is to Joanna at teeterbee@excite.com: I was very pleased to get your e-mail and did respond but I can't send or receive any e-mail right now since the system crashes earlier this week. Just wanted you to know that I wasn't blowing you off. I'll be writing just as soon as I can. Kim
Commentalso had MRI's,Cat scans, ultra-souns, berrium enemas, upper GI tests, a camera inseted into my bladder, four separate laproscoptic surgeories, was told I needed a therapies, did a year in PT, all to no avail. In sifting through the internet, I found a specialist in the Boston area, and they refered me to Dr. Benson Horowitz. I love him he's great. Very opptimistic. I've read a couple of other woman were told the same as I was, that this was a neuro-fiber transmitor defect, and it could be treated with amitriptiline. I started at 25 mg. and am now up to 125 mg. I have had some relief, and I also have my very bad days, around ovulation, just like many of you. My doctor assures me that I will make a complete recovery especially since the medication has already relieved my irritable bowel syndrome, my insomnia, and me panic attacks. The side affects were hard to get used to, especially now, because I find myself lightheaded some times, even when I'm sitting still. It is the first real hope I;ve had in along time. Most of my pain was associated with intercourse up until about 2 years ago, then thought I got a UTI only to find that there was no infection, and I've been on a very vicious merry-go-round since then. I wish I could offer some hope or explaination, or comfort but I am myself fighting depression because of all this stuff, but I am very grateful that this guest book exists. I have felt so freakish and loney for so long. It's kind of funny after being told for so many years that there was nothing wrong with me, that I most likely just didn't like sex, or maybe really didn't love my husband and that is the reason having intercourse hurt, you start to believe what they are saying, and the funny part is I couldn't figure out how other women actually enjoyed sex! I really thought that this was just something that happened after having children, and I could not figure out why others still enjoyed it.
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CommentI got cut off during my first entry. I have compared notes that many of you written, and there is a common link between some of us, and that is a broken tail bone, or injury to our backs. When I first experience the full blown vulvadynia I too expected the tail bone. I went to my chiropracters. He actually did an internal and found that my tail bone had healed in the wrong position. We decided to try manual manipulation of the tail bone to bring it back down to where it should be. He also woulds push the sacrial nerve away from the area. When he was done, I would feel complete relief from the burning pain, And definate relief for the abdominal pain. Like alot of you my insurance ran out, because you are only allowed a sertain number of visits a year. I am convince taht my tail bone plays a very big role in my pain and have decided to go back, regardless of the cost. I will post again and let you all know of the results. Please try to remain opptimistic, I do realize how hard that is, believe me I've been at this for so long, but I do agree that the medical community needs to be educated about what we're going through. Please everyone keep in touch.
CommentI have also recently been diagnosed with vestibulities.Are there there any cures in sight> the ignorance of the OBYGN is un believable. Where can I get help.Even though I got the diagnose I was not offered treatment of any kind. Only a drug,called Dyclone 1%, which is no longer on the market. It was manu- factured by AstraZenaca, Wayne PA.Is there a MD in the NYC area I can contact. Hulda
CommentI have had burning and irritation in the vulvar region for 3 months. During that time, I went to two obgyns and was treated with metrodizanol and cleocin for bacterial vaginosis and floxin for ecoli in the vagina. The symptoms did not improve. Then I went to see Dr. Stuart Fowler at the Mayo Clinic in Phoenix, AZ. He specializes in vaginal infections. He believes I have contact dermatitis rather than vulvadynia because the pain increases when I sit for long periods. He gave me this list and said it is helpful for vulvadynia and contact dermatitis. Hope it helps: 1) Use Oilatum Unscented soap 2) Wear cotton underwear 3) Wash underwear in Cheer Free detergent. Do not use fabric softeners. Rinse underwear twice. Do not use anti-cling agents such as "Bounce". 4) Wash hair in the sink. 5) Use unscented white toilet paper such as Northern Unscented. 6) Do not apply perfume, powders or spermicide to vulva. 7) Use unscented tampon, pads; preferable 100% cotton pads. 8) Shower in morning followed by blow drying the vulva with hair dryer on cool setting. Repeat blow drying of vulva in afternoon if circumstances permit. 9) Apply Vanicream to vulva at bedtime. If this stings, stop. 10) Rinse with Domeboro's solution (keep in squirt bottle) after voiding and swimming. This solution provides temporary relief of minor skin irritations due to poison ivy, insect bites or rashes caused by soaps. 11) Use Astro-Glide for lubricant during intercourse. 12) Attempt to "defocus" from vulvar symptoms. 13) Be patient, onset of improvement generally requires 4-6 months. He also found that I had a yeast infection so prescribed diflucan every two days for two weeks and then once a week for two months. Thank you for all of your stories and information. God Bless you!
Commentdoes anyone know of a pt in the vt area or close to it that offers the biofeedback? Iused to go to Keene NH but my therapist left to work somewhere else.
CommentI am from NEW ZEALAND and am currently visiting friends in ORLANDO, FL. for a few weeks. I have suffered from vestibulitis for about 4 years and was wondering if anyone knew if there are any specialists in Orlando that I could see. Furthermore, if there are any New Zealanders reading this that know of any specialists in NZ that are worth seeing, please let me know.
CommentTammy, I don't know how far this would be from you, but I know of a therapist at the Boston Medical Center by the name of Laura Berman. She runs a Women's Sexual Health Clinic there and if you're interested in contacting Laura, her direct phone number is 617-638-8959.
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CommentGOLDILOX THANKYOU FOR THE NAME OF A P.T., BUT I ALSO HAVE ANOTHER QUESTION FOR THOSE WITH A TAIL BONE OR SPINE INJURY. I AM WORKING WITH A CHIROPRACTOR WHO IS TRYING TO STRAIGHTEN MY TAIL BONE. AT FIRST WHEN I STARTED TO RESEARCH MY PAIN, I DISMISSED THE TAIL BONE THEORY BECAUSE I HAVE HAD THIS PAIN IN ONE FORM OR ANOTHER SINCE BEFORE I WAS SEXUALLY ACTIVE, SUCH AS JEANS WOULD IRRITATE ME AND SITTING ON A CUSHIONY SEAT WAS ALSO UNCOMFORTABLE, AND MY MOST RECENT TAIL BONE INJURY HAPPENED ABOUT 10 YEARS AGO, BUT THINKING BACK I REMEM-BERED FALLING OFF OUR ROOF ON TO A STUMP BELOW DIRECTLY ON MY TAILBONE. WHEN YOUR 15 YOU HEAL QUICKLY AND MOVE ON. I BELIEVE THAT IN MT OF MY EARLIER POSTING I MENTIONED THAT I WAS HAVING MY TAILBONE FIXED. IT IS A PAINFUL AND UNPLEASANT VISIT TO THE DOCTOR BUT AFTER MY APPOINTMENT IS OVER THE ABDOMINAL PAIN IS GONE AND THE BURING GONE BY ATLEAST 95%. IT DOESN'T LAST LONG BECAUSE MY TAILBONE IS SMASHED SO BADLY THAT IT IS ALMOST PARALELL WITH MY SPINE AND THE LIGAMENTS HOLD IT TO TIGHTLY, AND THE MUSCLES ARE TIGHT AROUNG THE LIGAMENTS, AND OFCOURSE THE MUSCLES IN THE PELVIC FLOOR ARE IN CONSTANT SPASM, DOING A JOB THEY WEREN'T INTENDED TO DO. MY THOUGHTS ARE THAT IF WE CAN REPOSITION THE TAILBONE THEN THE MUSCLES CAN THEN RELAX, AND THEREFORE NO MORE SQUEEZED NERVES, THEREFORE NO VULVADYNIA. MY CHIROPRACTOR IS THE ONE WHO BROUGHT TO MY ATTENTION THE DIFFERENT KIND OF PAIN THAT A BROKEN TAILBONE COULD CAUSE. I'M SORRY I AM BEING SO WINDED BUT I JUST WONDER IF ANYONE HAS EVER LOOKED INTO THEIR TAILBONE INJURY AND WHAT THE RESULTS WERE. IF YOU HAVE ANY INFORMATION OR ADVICE I WOULD REALLY APPRECIATE IT.
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CommentHAS ANYONE ELSE OUT THERE TRIED TO FIX THE TAILBONE OR SPINAL INJURY? IF YOU WOULD LIKE TO RELATE YOUR EXPERIENCE AND RESULTS I WOULD REALLY LIKE TO TALK TO YOU.
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CommentHAS ANYONE WITH A TAILBONE INJURY TRIED TO HAVE IT FIXED AND WHAT WERE THE RESULTS. IF YOU HAVE ANY ADVICE FOR ME I WOULD REALLY APPRECIATE IT.
CommentFor those of you whose doctors are prescribing steroid creams, please be careful. I know of one woman who has been significantly helped by steroids, and many (including myself) who have suffered long-term worsening of pain because of them. They act as anti-inflammatories, but they also thin the skin and can make sensitive skin much more sensitive. Also, to Tammy who was considering surgery--again, be careful. Some women are helped by surgery, but the reportedly high cure rates are often inflated. Many women who have the surgery feel better for a while, but in a year or two the pain often comes back--and if the doctors don't keep track of their patients' well-being long-term, these women are included in their "cure" rates. My advice is to be wary of the "if it hurts, cut it off" theory, which strikes me as incredibly primitive--and something that no doctor would be likely to suggest to a male patient! Try non-invasive therapies first, and only go for surgery as a last resort.
CommentFor the past two and a half years, I have been having intense itching, inflammation, redness and pain. This problem began nine months after I had my son. I had gained a lot of weight when I was pregnant so I strictly dieted after that to lose the weight. I barely ate anything in an attempt to lose the weight. I began having a heavy discharge with intense itching and inflammation. I went to the doctor and began treatment for yeast infections and bacterial infections for one and a half years. Nothing helped. I have been to four different doctors all together and none of them have any idea what is wrong with me or what is causing this problem. All tests have been negative and all of the treatments have not helped. I think they just made the condition worse. Like everyone else I have tried everything that I could think of to get rid of this problem. Avoiding certain foods, no soaps, no detergents, etc. Nothing has helped me at all although not using any soap gives me a little relief. About three weeks ago I found a vitamin book I had and I looked up vaginal itching. In that book it indicated that vaginal itching could be caused by a deficiency in vitamin B-2 (Riboflavin). I figured it couldn't hurt so I bought a B Complex as well as B-2 caps. I have been taking both of them three times a day now. It has been approximately three weeks and I cannot believe the difference. The itching, inflammation and redness are drastically improved. I have not consulted my doctor regarding the supplements and I have been taking them three times a day and the recommended dosage is only once a day but I was desperate. However, after taking the B vitamins I feel about 90% better. I am going to continue taking the supplements and I hope that it cures the problem completely. I am going to talk to my doctor about the dosage but the book said that there was not really a toxicity problem with taking Vitamin B because the body does not store it but everyone should probably check with their doctor before trying it. I am not positive that this was my problem but after two and a half years with this problem, this has been the only thing that has helped me. I have also been taking a supplement called Damiana which is supposed to bring oxygen to the genital area. Perhaps a B vitamin deficiency could be causing this problem for others. I have found this guestbook to be very helpful - just knowing that others share this terrible problem made me feel better so I wanted to share this discovery. I hope it helps.
CommentI was put on Cipro for 6 days for a uti, then thought that I had a yeast infection. I treated myself with over the counter meds for 5 days as directed. I went back for a urine check and it was clear. However, the pain, burning in and around my vagina was really bad. The creams made it much worse. I then went to my gyn who said that the antibiotics had passed through the urine and had caused all the pain. Now 3 weeks has passed and I do not think this is the case. I beleive that I may have vulvodynia. I would like to know if anyone out there has had a smilar experience with antibiotics or yeast infection creams? The pain gets worse at the end of the day, and I am not sure where to turn now. The gyn tested me for all sorts of things, I do not have herpes, yeast, or an std. Any help out there. Thank you again
CommentThanks Dr Glazer for this opportunity to make contact with other women. I live in Perth Western Australia the most isolated capital city in the world and I read this website I felt absolutely isolated. I'm 56 two children 1971 and 1974, laproscopic sterilisation in 1976. I remarried in 1978 and up until November 1997 had an extremely active and fulfilling sex life. Early 1997 I began using Yam cream to up my Estrogen levels but no real difference after 11 months. In November 1997 Pap smear was positive and underwent laser treatment by Gyno on cervix. Tried to resume sex in February/March 1998 but very uncomfortable. Felt that one small area just inside of vagina was very sore but perservered. By August 1998 visited Gyno but nothing obvious on vaginal wall and certainly no discolouration. Pain worsened and raw feeling within vaginal area. Feeling very frustrated I visited a sexuality clinic to see if they had any answers. Doctor said I was so raw vaginally she would not use a speculum but rather examined me found I was bleeding from vaginal walls thought it could be hormone related and referred me back to my Gyno. I saw him in February 1999 and he said I was lacking Estrogen needed HRT and was being further irritated by a odourless milky copious discharge. By this time my ESR blood level that had been around 50 (way over accepted levels) had now reached 70. Prescribed Flagyl (first of three courses in 10 weeks) discharge returned within days of finishing each course. Began taking HRT in March had bad reaction (many of the women I know swear by HRT but for me it was a problem). I had headaches, fluid retention, mood swings, swollen engorged breasts, and began bleeding ten days after commencing HRT I then discontinued HRT after 15 days but continued bleeding and clotting for 28 days. I had elevated blood pressure circa 125/195 which continued for for some months. By this time my whole vulva was red, raw, sore stinging and itchy. More Flagyl for discharge but did not help. By April/May 1999 I had urine which was brown cloudy and foaming (Irish Doctor said it looked more like a beer or Stout). I was then and am still now drinking around 10 pints (5 litres) of water every day. Yet the dark coloured and very irritating urine continued. This caused even further irritation with the vulva area. I now have 90 ESR levels, blood pressure improved now 90/175, but a out of control coloured constant odourless discharge and far worse problems with labia, clitoris, vagina and perineum. I have recently visited another Gyno who was recommended to me by my fantastic new General Practitioner. The male Gyno is sensitive and choase not to use the speculum as he could see the problem in the Vulva area and the redness and swelling around the vagina. He prescribed pessaries Ovestin Ovula (usually given to lactating mothers as it only works in the vaginal/vulva area and I am told is not systemic). I have persisted with the Ovula but within minutes of inserting I experience a burning sensation and that continues for an hour or so. My ESR levels are still 90, the vulva is an absolute mess and so am I. I like many of the other women I read about in these guestbooks have reached the end of my tether. I did say that I would trial the Ovula for a month and the Gyno has suggested that I be referred to a Vulva Specialist (who I believe worked for some time in a dedicated vulva clinic in another state of Australia). As I write this today my urine is still a problem although not so dark but certainly very irritating and I have just learned that I have a couple of "harmless" cysts on my left kidney - now is what has been causing my kidney pain. To cope with the urine irritation I too like many of the other women use warm water to wash my vulva thoroughly after urinating. My whole vulva is raw sore stinging and I have a horrific itch which is a little relieved when I pour over the warn water. Sometimes I get up during the night a do this once or twice. The main area where I feel I have cuts is around the clitoris area but this is extremely itchy and also sore. Where to from here I really don't know as I have lived a celibate life for two years which of course is very difficult for both of us - I and my husband really would like some answers. I was sent a copy of the letter from the Gyno to my doctor and it began with "Densie has a complex yet uncommon problem which I would hope may be resolved but it certainly at this point certainly does not look too promising". I suppose I should be pleased that this Gyno has given the name of a couple of specialists in the vulva diseases/gyno area to my Doctor. Love to hear from other women who have experienced a similar story as we can learn so much from each other and break the feeling of isolation.
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CommentTo Katherine- Believe me I have had all the tests, and surgeories I am ever going to have. What my chiropractor is doing is very uncomfortable, not to mention embarassing, but he actually goes into the rectum, and pushed the nerve away from the area, which he says is very swollen and irritated, once he does that he tries to manipulate the tailbone into it's original position. I go once a week. Immediately after the appointment I feel total relief, if I miss a week I feel it in my abdomen, and the burning is worse. Because the tailbone has been in this possition for so long it is going to take awhile to undo the damage. All of the surgeory I had done before was exploritory, except for the hystorectomy, which I'm glad I has done because they found three seperate things wrong with the uterus. Not to mention I certainly don't miss mt period at all. I still have my ovaries, so I have no estrogen problems. I am very hopeful that this burning pain will go away after my tailbone is fixed, (without surgeory). If anyone else has had there tailbone or spine worked on please, I would really like to talk to you.
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