There sure are a lot of us out there. First - thank you. Now, I'm 25, andI started having problems in high school with a discharge and infections that wouldn't clear up. When I was in college, I met the man who is now my husband. When we started having sex (he was my first and only) I suffered from mild(in comparison to now) pain. Initially, I foud relief. THIS MAY HELP SOME OF YOU - My gyn said that my vaginal ph was off, and prescribed Boric Acid vaginal suppositories. That helped for a while, but it was not permanent. Then my gyn tested me for HPV, and that was positive. I have no external signs of it, but she applied an acid treatment thinking that it might help. It didn't. So, now, 5 years later, I'm very frustrated. The most recent attempts to clear this up have been Amitriptilyn 50mgs (hasn't helped), and Lidocaine, which has made sex somewhat bearable, but it still hurts a lot during, and I pay for it the next day or 2. I think I'm going to give the low oxalate diet a try, but I encourage everyone to keep this site up to date. Maybe some doctor somewhere can figure this out. Just for background, let me add I have Crohn's Disease (similar to IBS) and I take Pentasa for that. I also have Spondilolysis(sp?), which is a back problem. When I was 12 I fell down some steps and got a hair line fracture in my spine. Also, my mother suffered from endometriosis. I'll be back for updates, and if I find a solution, I'll surely post it.

I am 40 and have had vulvodynia for the past 3 years. I have just spoken with my doctor asking her to up my elavil dose. She has also prescribed lidocaine. Hope this helps. I am about ready to jump out of my skin. Not only is the vaginal area affected, but also the rectal area, the inside of my thighs and now is also feels like my waist area. I can wait to get home and put on something that isn't tight or binding. Even sitting is uncomfortable because of the pressure on the rectal area. I wish someone would come up with a cure soon.

This is is a great idea! I'm 19 and I've had vulvodynia for several years. My symptoms include mostly itching (intense to slightly annoying). I sometimes have pain in that area but mostly itching. I have also had many reoccuring yeast infections, but now I am taking acidopholous and so far, I've had no more. Fortunately, my vulvodynia isn't too bad right now. I'm taking 3 caps of calcium citrate each day and am moderately following the low oxilate diet. I used to follow it faithfully, but now if I get a reaction, I know what I ate and can avoid it if don't want to deal with the irritation afterwards. For years I've had this problem, none of my doctors could figure it out. This January, I was lucky enough to find a competent gynacologist. She has been a major help for me. I used to think I was the only one with this problem. I greatley sympathise with other vulvodynia patients and can understand your pain and frusteration. If anyone would like to chat with me, please do. I may have some tips on things to do.

Just been diagnosed with vulvodynia. Thanks for this website, at least I have some idea of where to start with treatment. I've noticed the same problems in many. I also had yeast infections and sacroillitis. There must be something to this nerve damage. I hope everyone keeps posting their efforts at treatment and their results. Please add me to your list.

Dear Dr. Glazer,

Thank you for establishing this website! It is wonderful! Please add my e-mail address to your list. I have been a VP sufferer since 1984 and have tried a plethora of treatment options with little or no improvements in my condition. I have recently learned of your work with biofeedback and I am actively searching for a Physical Therapist in my area (Portland, Oregon) who would be qualified to offer treatment.

Thank you again for your work in this field. You are appreciated more than you know.

OOPS! I commented earlier, but put my e-mail down wrong. Here's the correct address.

Hi Howard, Its Cindy Nemser. As you may remember I have burning mouth syndrome, levator ani and now burning, tingling and aching in my feet. I find this web site interesting but since I do not have vulvodynia I am looking for answers to my other problems. To the person whose mother has burning mouth. Contact me as cnemser@worldnet. att. net and I'll tell you what I know but I haven't found the cure.

Cindy Nemser

I just found this web site after my Mom found Vulvadynia in an article and mailed it to me. When I read the article, I felt total relief, that maybe--finally--someone knows what's wrong with me! After reading through this web site, I could just cry! So many of the postings I've read sound just like me! I'm so very glad this web site was started, and Doctor, Cheers to you!

I'm 26 years old and my problem started about six years ago. I began by having a problem with frequent yeast infections. I would notice a terrible burning during intercourse, although being young, I was often able to "block the pain" long enough to reach orgasm. However, immediately after, a burning would begin that was so bad I often would put ice cubes or cold cans of soda between my legs.

I went to doctor after doctor, being treated for yeast infections. I don't remember when, but eventually it seemed that I wasn't even noticing the signs of the yeast infections, except the burning I felt during intercourse. I kept assuming that it was a yeast infection, but often I would be told by my doctor that the yeast infection was "very slight," "hardly even noticable," and if I weren't complaining of symptoms "I wouldn't even bother treating you!" I thought I was loosing my mind! In fact, one doctor even told me that this WAS a condition of my mind, and that perhaps I should spend some time "exploring myself with my own fingers" to get used to things being inside of me! (This suggestion came after I mentioned that I've never been comfortable with tampons or anything else besides my lover inside of me.) Needless to say, I left this doctor for yet another--number 6 I think now.

I have been married just a year, but have lived with my husband for four years now. The problem has progressed gradually in the last four years, and now I am lucky to have intercourse once a month. Although, I can't remeber the last time it wasn't painful.

I haven't had pain in other areas of my life, yet, besdies intercourse, and can only imagine how awful it must be to hurt all the time. For me, the hardest thing has been the loss of intamacy between myself and my new husband. I'm lucky that he's very understanding and caring, and I try to do "specail" things for him when I can't be sexual myself. The problem is that even though sex itself is painful, my desires are still strong, and when I do things for him, it is often very frustrating for me. Most importantly, I miss the kissing and petting that just isn't the same or as frequent without regular intercourse.

I, like many, was diagnosed with the HPV virus at the age of eighteen. The yeast infections began to get more common after that, but didn't seem to get really bad until about two years later. Then I seemed to bounce back and forth between yeast and bacterial infections. Even now, I really don't have symptoms of a yeast infection, but intercourse is painful--so I make an appointment, and usually they find some slight signs of yeast. However, I'm not sure that this little bit of yeast would even be an issue other than painful intercourse.

For the yeast, I've tried Acidophilus (sp?), eating yogurt, insurting yogurt, Diflucan, Teryzol, Diflucan and Teryzol together, treating my husband, abstaining, going off the pill, watching the sugar in my diet, and believe it or not, even microwaving my underwear! I've been tested for Diabetes and AIDS, both negative, and yet the yeast seems to keep coming back. But again, I still wonder if perhaps I will always have some yeast present, but it's not the yeast causing me so much discomfort. Maybe it's Vulvadynia.

My next Doctor appointment is in two days, and I've taken lots of notes from this guest book to bring up with my Doctor. I do have to say that at least now I know that (1) this is a REAL problem, not in my head, and that (2) that I'M NOT ALONE ! I'm so thankful for this web site, and would be open to E-mail from anyone who wants to talk!

Dr. Glazer, thank you for a wonderful website. It is comforting to know I am not alone in suffering from vulvodynia. I was diagnosed four years ago and treated with Elavil with quite a bit of success, however, after the birth of my daughter 17 months ago my symptoms have returned to the extreme especially affecting my bladder and urinary discomfort. I am especially interested in hearing more information or communicating with someone who is also suffering from what I have been told is severe "spastic bladder" related to vulvadynia. I am absolutely miserable at this point and just yesterday was put back on Elavil. I hope the treatment will again be successful in helping my "spastic bladder". I have also suffered chronic vulva burning for at least 10 years (which Elavil did help). I would also be willing to talk with anyone interested in discussing pregnancy and vulvodynia - I have a healthy 17 month old daughter - yes, vaginal delivery is possible! But I am desperate at this point to discuss with someone how the bladder and urinary tract all relate to vulvodynia - this is a new aspect of the disease for me!

I commented earlier but am new at the Internet and flip flopped my signaure and E-mail addess. I will give it another try. Also please add my name and address to your ListServer. Thank you.

Dr. Glazer, thank you for a wonderful website. It is comforting to know I am not alone in suffering from vulvodynia. I was diagnosed four years ago and treated with Elavil with quite a bit of success, however, after the birth of my daughter 17 months ago my symptoms have returned to the extreme especially affecting my bladder and urinary discomfort. I am especially interested in hearing more information or communicating with someone who is also suffering from what I have been told is severe "spastic bladder" related to vulvadynia. I am absolutely miserable at this point and just yesterday was put back on Elavil. I hope the treatment will again be successful in helping my "spastic bladder". I have also suffered chronic vulva burning for at least 10 years (which Elavil did help). I would also be willing to talk with anyone interested in discussing pregnancy and vulvodynia - I have a healthy 17 month old daughter - yes, vaginal delivery is possible! But I am desperate at this point to discuss with someone how the bladder and urinary tract all relate to vulvodynia - this is a new aspect of the disease for me!

I am a subscriber to the Vulvodynia Listserv but have not had anything from them since yesterday so am posting here for anyone who moight happen to look here.

I have been suffering from the symptoms of vulvar vestibulitis for approximately four years. I have had a history of yeast infections since I was a little girl. Therefore I thought that my years of chronic pain were attributed to a chronic yeast infection. I have seen countless doctors including OB/GYN's, Dermatologists, and even Holistic doctors. All of these doctors have come to different conclusions but have never made a firm diagnosis and have never made me feel like they wanted to help me. I have tried several topical steroid creams and antibotics but nothing has fully cured the swelling, itching, or the deep seeded pain. Unlike many of the other entries that I have read on this website, I have not experienced a back injury. I do have a weak back. But I am sure that I can strenghten that with mild exercise. Thank God for my wonderful supportive friends and family. Especially the support of my husband. Our sex life has been " zero" for the past six months because the pain is so excrusiating. Sometimes I cring during the pain of urinating or even bathing. I actually thought that I was being punished for something. I had several scares of cancer, AIDS and Herpes. But was in a very low risk catagory for all of those things due to life style. Now I have been dealing with a general practitioner whom has been GUESSING for two years about my condition. He does not seems to care about the pain and suffering that I have endured.Even so I have followed every suggestion that he has made. Including going through countless examinations with the taking of smears and cultures, several unsuccessful topical medications,and two painful biopsies with him. And still no answers or diagnosis. Yes, I am frustrated. Especailly with the fact that he is relectant to refer me out to a specialist. I really would like to know of any specialists in my area that could help. If anyone knows of any in Southern California, primarily in the Orange County area, please let me know. Or if anyone knows of any medications that I should suggest to my doctor or recipes for low oxalate foods, please e-mail me at ednshell@juno.com. In the meantime, I will research my symptoms and take an aggressive approach to healing myself both physicially and emotionally. Thank you for your helpful website.

I was just recently told there is a name for my complaint called volvodynia. I am going to see a vulva specialist in a week and a half to see what ideas he has. I have had pain with intercourse since I dated my now husband, 22 years ago, with it getting progressively worse. We reached the point 2 years ago of having no intercourse sex, with helped a great deal. But last month the burning and stinging came without sex, just happens especially when sitting. I am glad to have found this sight and confirm the diagnosis is not just a placebo from my doctor. It gives me some comfort to know I am not alone in this. Thanks for providing this service.

Please add me to your list server.

I think your website is a great help to all us vulvodynia sufferers. The only thing is that it can be quite depressing to know that the chances of it going away aren't that good. I have had vulvodynia for 6 years and was recently diagnosed when my friend gave me an article from a woman's magazine about a condition which were the same symptoms that I was suffering from. I had gone to many doctors and had many treatments but was never given a diagnosis. My pain like many others, started after a bout of bladder infections and yeast infections. After switching doctors, I found out I was being treated for yeast infections when I didn't even have any. At first there was just an itchy feeling, like I had an infection and sex was still good. Eventually the pain became burning and hard to deal with. I am now seeing a doctor in Manhattan who specializes in this. I am on elavil, atarax and estrace. I have some relief at times but I never feel "normal". I am 33 years old and single. I take good care of myself physically and have a good social life, but because of this problem I am reluctant to be in an intimate relationship. Sometimes sex can be okay but most of the time the pain can last for a week after. Right now I feel okay but my vaginal ph balance is off, I have a high acid level which causes additional burning. I am using baking soda baths for relief. Dr. Glazer, I really want to know if people ever get cured of this condition. It seems like it will never go away. I have heard about biofeedback and may try this soon. Thanks.

I am 28 years old and I have been recently diagnosed with VVS. I have been taking Elavil (75 mg), Claritin, Calcium citrate, topical creams, and sitz baths (also, I stopped taking birth control pills on the adive of my physician). I have just started physical therapy, biofeedback, and dialator therapy. I am hoping that I will find some relief using this treatment plan. I am also trying to start a low oxalate diet. Prior to being diagnosed I sought treatment for burning upon intercourse and itching (sporadic). I was sent to a specialist a few years ago who told me that I had a jagged hymen ring and so I did Kegel exercises to try to smooth it back out. I did have some relief with this treatment when I resumed intercourse. After that I still had some burning and pain that usually occurred during the week before and the week after my periods. I also had dryness, which was what I thought may have been causing the pain/burning symptoms and which I thought may have been caused by using birth control pill for many years. In October of 1997 I asked my gyn about my symptoms. For a few years I just continued to have intercourse despite the burning and irritation I was experiencing. I am hoping this treatment approach works!! I have an extremely supportive fiancee who is very understanding and who has helped me in so many ways in dealing with this ordeal. Since my diagnosis in October I was referred to a physician in Baltimore who has his own clinic related to vulvar pain sydrome. I like his approach thus far, but I do not feel that he listens or understands my needs and my fiancee's needs. He told me that I have a severe case of VVS and that I will most likely need to have surgery. After reading some of the comments written by others who have undergone surgery, I am very apprehensive and am looking at surgery as a last resort. So far he says that I haven't improved, but I see small improvements. I would like to find a new physician in the Baltimore, MD area, who works with vulvadynia patients. I feel as if my current physician had me pegged as someone from day one as someone who would need surgery. I would like to find a physician who will take the time to listen and try to understand my story and experiences. If anyone knows of a good physician in the Baltimore area, please e-mail me at scarswell@mailexcite.com. This site has been extremely helpful and supportive. At least I know that there are other women out there who can understand what I am going through. Please add me to your listserver.

Please add me to your listserve. I am a psychotherapist/biofeedback certified (BCIA) who did some work with pelvic feedback around 8 yrs ago with a few patients using Dantac disposable electrodes via BioComp. Had great results. I am thinking of getting back into this biofeedback specialty since I have recently begun working with a female intern and have an interested physician. Please let me know of some basic litereature and basic training courses. THank you.

Nice site. Not a current area of practice, just following up on John Perry's comments in PsyUsa.

I am 27 years old and have suffered from vulvular vestibulitis for almost 2-1/2 years. The onset occurred in September of 1995 when I had laser surgery on my cervix and vulva.

I've had vulvular pain ever since and the doctor who did the surgery said it wasn't from that. I've tried various creams, diflucan, calcium citrate and Elavil. The Elavil side effects became too much. The doctors make me feel like it's all in my head because they don't physically see anything wrong. I'm getting very frustrated and discouraged. I was told by a specialist that I saw in Philadelphia that it was nerve damage cause by the surgery and I also believe that. So my question is if anyone has had nerve block surgery. I've heard of it, but from reading letters on-line, no one has mentioned it. Any info would be greatly appreciated.

I am currently off of the Elavil and I am applying Vitamin E topically every night and will soon be trying the 35% H2O2, but more suggestions would be great. Thanks.

Browsing...I've been having burning and pain for some time and my dr, said it could be this illness, but maybe not. Am treating a third infection now--(this time, staph) so hopefully the problems will clear up soon. I have rheumatoid arthritis and am on a great deal of meds so yeast is also a problem here and there and getting a diagnosis for all of this has taken 6 months! (Not great for a "newlywed.)

Hello. First of all I would like to thank everyone and Dr. Glazer for contributing to this wonderful site. I can't begin to tell you how much it has helped me in terms of keeping my sanity. I am 23 years old and have been suffering with this terrible and debilitating situation. I believe it may have come about when I had a terrible allergic rection to a spermicide. Since then I have had buring upon urination, painful and buring intercourse, and vaginal dryness. I have left many good doctors because they could not help me and basically told me it was all in my head. I actally began to think that, I mean how could 5 different doctors not find anything!!!! Well after this site and finding a doctor to confirm my situation, I know know I am not crazy and alone. However, I still have not been able to find any relief. My current doctor is trying however. After 4 years, it is really beginning to take a toll on my mental health as well as my intimate relationship with my finace. Although, he is just wonderful about this whole ordeal. I'm lucky to have someone so supportive. I still find myself crying myself to sleep at night because I feel so helpless and alone. It makes you question yourself as a woman too. I always wonder and hope this will not have any harm on my plans for starting a family and having healthy childen. All these things are constantly preoccuping my mind. I'm 23 yeras old and forgot what it is to enjoy the pleasures of making love to my fiance. I'm always worried about the pain I will exdperience afterwards. How romantic is it to have to run and put ice between your legs after being intimate? Pretty sad huh? If I only had one wish, it would be to enjoy sex- something that comes natural to most people my age. I feel so robbed and alone. If anyone has any suggestions on how to beat this and send it back fron where it came from I would gratly aprecite it. One day I would lile to feel "NORMAL" again!!!

I'm 44 and have had vulvar pain (usually restricted to a small area dorsal to the vaginal opening) for the past 2 years. I have tried topical steroids (several types), hormone cream, Xylocaine, aloe vera gel, vitamin e oil, acupuncture, and physical therapy. Sometimes the pain goes away for a few months, but I can't seem to connect it with anything. Five years ago I was diagnosed with Reflex Sympathetic Dystrophy which affected both knees and thighs. I currently feel I have it mostly under control due to a combination of acupuncture and exercise. I would like to hear from people who have been diagnosed with both RSD and Vulvadynia/Vestibulitis. Also would like to hear from people who are trying calcium citrate, which so far has not worked for me. How much are you taking and do you feel the timing of when you take it are important? Also, would like to hear from people about the pro's and con's of taking baths.

I am living on Vancouver Island, and finding that doctors in this area do NOT understand what is wrong with me. I can't seem to get them to understand the agony I am in, and since I have other medical problems in which they want me to walk more, etc., and this just aggravates the problem they say "I'm unco-operative, and just don't want to get well, and am using this just as an excuse". I also have bronchitis, asthmatic, and am on oxygen and nebulizers, and since I was in a car accident which caused a fractured leg and ankle, I require more walking for my ankle AND FOR MY BREATHING PROBLEMS. I also need to stop smoking NOW... And yes, I admit that I'm using the vulvodynia as an excuse as far as the smoking is concerned, but I get SO ANGRY being nagged about = not walking (which aggravates); still smoking (which helps me keep from loosing my temper with everyone); and a family that does NOT understand what is happening with me.

I have been to Vancouver General Hospital, Women's Pavillion and they don't see anything, say tests are negative (blood, urine, bowel, colin, x-rays, etc); therefore don't know anything that is wrong.

I am currently on 50mg of Luvox and 20 mg. of ampicillin/ once a day; along with 30 mg. of Buspirone, Zanax 4x daily, to alleviate panic/anxiety attacks; which appear to be brought on by the fear of the vulvodynia getting worse.

The only relief I get is by lying down, or lying in a LazyBoy type chair, where I am sitting on the lower spine.

PLEASE, any help.... I can travel with oxygen tanks to any destination that would understand there is a problem. I am 59 years old, accident in 1994, resulting from husband heart attack (he's 60).

I am 24 years old and was searching the internet when I found this site. I was diagnosed with vulvadynia after a series of yeast infections from taking too many antibiotics. I also injured my tailbone when I was young. Living with this chronic pain has been rough and quite secretive, but I am learning to speak out about it. I am feeling so much better than when I was first diagnosed, I am also on amtripilene and citrical. I follow a low oxalate diet most of the time with occasional "cheating." I have also had a dramatic change with accupuncture. My doctor mixed my treatments with a chinese herb tea and some herbal douche. I felt much better after a few treatments with this doctor. I really apperciate this site and would like to be on the server list. Thanks for helping others open up with this chronic illness, it is hard to talk about with people who do not have the problem.

What a wonderful surprise to find this site! I am looking for information on Dr. Clive Solomon's high oxylate diet. Anyone know where I can find it? Thank you and thank you (!!!) for this site!

Lisa

I am exhaustged trying to find a medical practitioner who specializes in Vulvodynia located on Long Island. My 75 year old mother sufferes from this disease and we really need to find someone who can treat her in our area. If you can tell me where I can find out this info. please e-mail me. Your trouble would be most appreciated.

I am interested in Doctor's in the Chicagoland area whoare working in this area.

I recently found this web site and have been checking in on a regular basis to see how others are doing. What a great way for those who are suffering to communicate. I only wish it would have been around years ago. I have suffered for about 4 years, and fortunatly am in a place where I only have occasional flare ups from time to time when I experience major stress. Reading over all of these comments I get goose bumps. Unless you have lived through this strange kind of pain, it can be very hard to understand. I don't think I have read about one drug here that my doctor did not try with me. Creams, anti depressants, Paxil, Elavil, herbs, Citrical, Clive's low oxylate diet, biofeed back, Kegals, etc, etc. The list goes on and on. After one very intense year and no relief, my doctor finally admitted me to the hospital to remove my bartholin gland. Many people are skeptical about this treatment, but I was considered a 9 on a pain scale of 1-10, so I was ready to try anything. I've been virtually pain free for the past 3 years, and I am very grateful to my doctor. I'm not saying that this surgery is suggested for others, because we're all different, I'm just saying that there is hope! I know it seems impossibe when you are in so much pain to think that some day it will actually go away, but in my case it was very much a positive attitude that helped. It's important that you use any resource that you possibly can. If your doctor is telling you this is in your head, don't waste another dime on them. Find another and another until you succeed. For anyone looking in Michigan, please feel free to e-mail me for help.

Thank you for making information about vulvodynia available to everyone. My own symptoms have a very specific cause -- I did not experience vulvar pain until being treated with trichloracetic acid for genital warts. I wonder if the symptoms will fade with time, or if any therapies used on women with non-specific or other causes of vulvodynia/vulvar vestibulitis would work for me. I wish all gynecologists as well as other doctors would warn patients thoroughly about the pros/cons/possible side effects of all treatment before administering it. I understand that the strain of HPV that causes external genital warts is not life-threatening, so I could have done without the acid treatment -- now I am paying with severe pain, depression, and uncertainty about my future.

Thank you for making information about vulvodynia available to everyone. My own symptoms have a very specific cause -- I did not experience vulvar pain until being treated with trichloracetic acid for genital warts. I wonder if the symptoms will fade with time, or if any therapies used on women with non-specific or other causes of vulvodynia/vulvar vestibulitis would work for me. I wish all gynecologists as well as other doctors would warn patients thoroughly about the pros/cons/possible side effects of all treatment before administering it. I understand that the strain of HPV that causes external genital warts is not life-threatening, so I could have done without the acid treatment -- now I am paying with severe pain, depression, and uncertainty about my future.

I would love to talk to anyone who has experienced problems similar to my own. I am very sorry for all who experience such horrible pain, but in my case, the pain is only caused by very specific touching of the lower vestibule--and this is not a problem during sex, so much as that my latest gyn. has noted it. For me, the problem is itching--constant, chronic, acute ithcing, that is like the worst yeast infection you've ever had, but permanent. I'm presently on dr. #12 over a 7-year period, and the only agreement among any drs. is that 2 have decided that my symptoms are caused by HPV--I had laser surgery to remove 2 small areas of my cervix 8 years ago. My favorite gyn. to date found evidence of 2 new strains of yeast causing an infection, and it took 1 1/2 years of various treatments with her before the seesawing between yeast & bacterial infections more or less ended. When she could find no organisms but I still itched--and was obviously red & irritated--she referred me on to the dr. I see now. This dr. concurs with the previous diagnosis of HPV causing the symptoms--which is no relief, since HPV is presently permanent. My husband is very frustrated, as am I, and we both worry about having a child. I'm nearly 32, and we want to start our family in the next 2 years, but worry that we have no sex life. We haven't had relations in 4 months, and we're both getting severely depressed over this. Has anyone out there dealt with this? I'm thinking of trying acupuncture now, since nothing else has helped--I've tried nearly all the treatments I've seen here, and nothing has helped for more than a week or two at the most. Any ideas? *Please* contact me!

Hi:

I'm 31 years old and feel I possibly have Vulvodynia. I have had chronic yeast infections since I was 16 years old. In September 1997 I had my tubes tied and every since then I have had severe yeast infections that my normal medications can't begin to touch. I then went to a bacterial infection and back to yeast. I also need to mention, at the time I had my tubes tied, I realized that night that I had a numbness in my right leg, my OBGYN told me that most likely it was the position that I had been laying in during the operation and that it would go away within a couple of months, it is now March and still I have the numbness and also a burning sensation in my leg. I now have the burning in my vagina that I have never experienced, before, could they be related...I think maybe, even though the burning is everywhere within my vagina, there is one particular spot that feels inflamed and on fire all the time. I have been to the Dr.'s office just about every week for the last 2 months, I have gone so far as to have her check me for STD's, so far they have come up clean. She has heard of Vulvodynia but isn't 100% convinced that I have it. I have heard many of you refer to a diet, could someone let me know what you can eat, I also have found cafeine seems to make the burning sensation even worse. I keep asking my Dr. if possibly herpes that just hasn't broken open and she does not feel that is what I have. I'm going crazy already, I feel for you people that have put up with this thing for months or years. A day is too long in my opinion. Lastly, I have used boric acid within capsules, like suppositories, the drug store made them for me, don't need a prescription, use one per night, I found a 75% improvement overall to the burning, just that one spot that I can't seem to find relief with.

I am 29 years old and have been suffering with vulvodynia for 3 years. It started out with recurrent UTI's and yeast infections. I was on every antibiotic out there for almost a year straight. I'm on my fifth doctor and he seems to understand what I am going through. He prescribed Elavil and a steroid cream. I just started it so I haven't really felt any relief yet. It has been so hard emotionally. My husband is very understanding but it doesn't change how miserable I feel. I just want to get back to a nornal sex life and basically a normal life! It's good to know that I am not alone and that there women out there who know excactly what I am going through. That does make it a little easier. Please feel free to E-mail me anytime. Kris

First, thank you for this wonderful site. I was diagnosed with Vulvodynia a year ago and thankfully have a wonderful ob-gyn in Manhattan that is very "up" on this condition. I was doing very well for 8 months on 50 mgs. of Pamelor, compresses of Aveeno and cold water twice a day, and believe it or not, applying Crisco oil topically several times a day. All of a sudden, I have had a flare up and nothing was working. My doctor just started me on 50 mgs. of Elavil and I was wondering how long it generally takes for the Elavil to begin working. Also, how long do these side effects last, especially the fatigue. I am also in the process of thinking about biofeedback. Do you know anyone in the Rockland County area? Do you suggest going to a physical therapist or a licensed biofeedback specialist? wondering how long it generally takes for it to work

My name is Michelle, last year the doctor removed a tumour from my vagina which I believed was causing my incredible itching. Now the itch has returned and there is a new growth. Do other women with vulvadynia also have benign tumours?

My name is Michelle, last year the doctor removed a tumour from my vagina which I believed was causing my incredible itching. Now the itch has returned and there is a new growth. Do other women with vulvadynia also have benign tumours?

Three years ago, after chronic yeast infections, I was diagnosed with vulvular vestibulitis. The doctor said that there was no known causee, but that it was most likely a virus. I was treated first with premarin which caused intense itching, then antibiotics which didn't help, then I was told that it may go away if I became pregnant. It's been over a year since my daughter was born. The pain during intercourse has lessened, but I now have new symptoms. I have abdominal pain (behind the pubic bone on my right side) which seems connected to pain to the right of my clitoris. These pains are sometimes twinges, sometimes knock me off my feet. What bothered me the most was the intense painful vulvular swelling that I would feel during the heaviest days of my period. Yet to the touch, the area didn't feel swollen at all. By now I had changed doctors, and the doctor I now had refused to acknowledge that I had a problem. I switched doctors again. When I went to the new doctor, I explained the frustration of the disease and not being listened to by my last doctor. He acknowleged that I have a reddened area andgave me only the treatment of surgery, but said there was a possibility that I had vulvular endometriosis. I asked how it was treated and he said sometimes birth control pills help. I asked to try those, and he gave me a 3 mo. supply, saying to let him know if they help. They alleviated the pain during my period. I called to ask for prescription and a letter to insurance so they'd cover the pills. Now he claims that I requested them as birth control. So, once again I feel that I'm not being listened to, but I am very happy that I've found something to help. The pain is not entirely gone, but it's bearable. By using all fragrance free products and wearing loose pants, the pain isn't too bad. Astroglide has helped with intercourse, though at times I do roll over and curl into a ball and cry (my husband isn't very understanding about my disinterest in sex). I've skimmed through some of the comments, and was interested in the "tailbone trauma' theory. I hurt mine badly when I was 12. And I have had incredible pain in my back during pregnancy (worst in the first few months - so that I can't move). I would greatly appreciate any information about vestibulitis or vulvular endometriosis. I am looking for a good doctor in the Rockford, IL area.

SINCE VULVODYNIA IS WORSEN WHILE WITTING, HAVE YOU THOUGH ABOUT DESIGNING A SPECIAL SITTING DEVICE (CHAIR) THAT COULD REDUCE PRESSURE ON THE AFFECTED AREAS??

This is my first visit to your site. I just can't believe how many of us are afflicted with this (I used to think I was the only one because no doctor could find anything wrong with me and seemed very puzzled). I have been on Elavil at 10 mg for about four years and it really has helped. I am really not crazy about staying on it forever, I'm not sure but I think it has caused my appetite to go crazy because I have gained about 25 pounds since being on it. I am also afraid that it will eventually lose its effectiveness. Sometimes when I have a flare-up of the burning, I will drink ice cold water and the burning will subside. I noticed this once and tried it a few more times, and there does seem to be a relationship. I also notice that the majority of women also complained of yeast infections either before, during, or after their vulvodynia symptoms began. Hmmmm..... Thank you ever so much for all the information.

Hello all, I've read some of the comments, and it is good to hear from others but also very depressing because I still have no answers. I actually been suffering with vestibulitis or vulvodynia for far longer than I realized. For some time - can't remember how many years, I have complained to my doctor of burning at the start and end of my periods. He basically shrugged his shoulders and moved on to the next thing. Last I found that if I avoided intercourse for 4 or 5 days after each period, then I wouldn't have the burning. So that is what I did for a long time. However last July the problem became severe. Needless to say after going through what you all have, I ended up with a doctor who told me what I had. He put me on amitriptyline and within a month I started having relief. However, for some unknow reason a month later I was back to where I began and that was in December. I am now trying to find somewhere to have biofeedback done. I need to do something. I live in the suburbs of Chicago. Does anyone know of a contact for me? Thanks for the web page and the constant efforts to find a cure.

I need more info in general. Fortunately, my case is not so severe that I am affected all of the time. But having a normal sexual relationship with my boyfriend is getting very difficult. He is extremely understanding but we need help quickly. I have tried changing by detergent and estrogen cream. It has not helped. Where did this come from?

Does your biofeedback techniques work for someone like me? Burning during intercourse and after unrination can be dreadful sometimes. How will biofeedback help this? thanks.

I so appreciate being able to hear from others who have had to deal with this 'silent' problem (silent because I know I never talked about it to anyone!) Any info I can get I am soaking up...thanks

This is a great web site...at last I feel that I am not going crazy. I am 35 years old and have had external vaginal itching/pain problems for the past 11 years. It actually feels like my pubic hairs are being pulled on at times. The symtoms subsided after being on Amitriptolyne for over a year back in 1988, but has now returned ever since the birth of my second child in 1996. Since then, in addition to all the typical symptoms, I also now have the sensation of "bubble" or air pockets traveling through the vagina. I feel this each time I sit down and walk around (it feels like the "bubbles" go from back to front) . It is not painful, but is very annoying. Sometimes there is discharge accompanying this feeling. I have been examined by a few doctors and everyone says look perfectly normal. I wonder if this could all be related. The last doctor I saw told me to lighten up about it and that was really frustrating because he has no idea how this is effecting my whole physical/mental well-being. Any comments/ideas??? Also, does anyone know of a doctor in the Milwaukee area that specializes in this?

I have finally been diagnosed with Vulvar Vestibulitis Syndrome. I also have interstitial cystitis, irritable bowel syndrome, and endometriosis. This is a wonderful forum for learning about this illness. I am joining the Vulvodynia Email list and encourage anyone to email me for further discussion. I am lucky enough to have a science background and have access to research facilities, so I have read every current article on Vulvar Vestibulitis Syndrome. I am thinking of writing a paper--from the patient's perspective, so if anyone has suggestions as to where to post it, I would appreciate your help. It has taken me three years to have the VVS diagnosed and, thus far, all doctors have told me that there's nothing I can do about the IC and IBS. I have had two laparoscopies for the endometriosis and am interested in finding out if there is a connection between endometriosis and these other disorders as that has not been addressed in the literature. There is a definate connection between VVS, IC, and IBS and I am hoping to find relief for all of them. I am seeing the specialist this week for a discussion of possible treatments, but I have so far had my family doctor prescribe me 50mg of amitryptaline (Elavil). I am hoping to undergo biofeedback although this may pose a financial problem as this treatment is not covered under Canadian health care. I think that it's important to note that there are many many possible causes of vulvodynia and it is important to get a correct diagnosis. At this point, there seems to be some discrepency as to the difference between VVS and Vestibulodynia, which is either a sever subset of VVS or another condition which is related to dysesthetic vulvodynia. Dysesthetic vulvodynia seems to be related to the neural pathways and is best treated through tri-cyclic antidepressants (ie. Elavil). VVS is differentiated as causing pain only during attempts at sexual intercourse whereas the other types of vulvodynia mentioned may cause pain all the time (ie., upon urination, without pressure applied). Initially, I only had pain upon sexual intercourse, but now the pain can persist without any applied pressure, perhaps indicating that Vestibulodynia is a subset of chronic VVS. From my readings, it seems as though surgery (perineoplasty) is the best way to treat VVS. The reason for this is that there is a histologic componenet to the syndrome. Certain chemicals (cytokines) are in association with certain nerve fibres which creates a sympathetically maintained pain response. Surgery removes these fibres and therefore eliminates the physiological component of the pain. In the studies that I have read, as long as a correct diagnosis is made and other causes of vulvodynia (perhaps concurrent) are ruled out, there is a very significant success rate for those who have had surgery. There is some discrepency as to the extent of the surgery. Some researchers has postulated a simplified version of the surgery and have met with success (ie. Martha Goetsche, Portland). I am interested in finding out the various results of surgery for VVS, the extent of surgery, and if anyone knows of surgeons who advocate a simplified approach in Canada (I live in Vancouver, BC but will travel). Also, I would like some feedback on the use of amitryptaline (Elavil, etc.) and its effects on VVS as well as IC. In addition, any information related to treatments for IC and IBS that may be of use would also be appreciated. Finally, the most debilitating effect of VVS is its prevention of sexual intercourse. The emotional strain, the effect on one's relationship, and the psychological effects of not being able to have sex are extraordinarly difficult to deal with. I would appreciate any input as to ways of coping with this problem. My long term partner is very understanding, but being creative for 3 years gets a little tedious after a while. However, precluding intimacy is also highly detrimental. Any creative suggestions are welcome, I've exhausted my repertoire.

I have had Vulvodynia for the past 14 years (since the age of 16). Like many others who have left their comments at this site, I also have been diagnosed with HPV and treated with no visible symtoms remaining. I sympathize with the respondents in the relentless burning and pain associated - many times I have run to a ice cold tub to squelch the pain. Recently, I have acquired buring mouth syndrome and taste distortion and have had no relief since August of 97. Little information is out there on the cause or treatment. I have read that viruses may play a role and can't help but wonder if HPV could be a factor. I spent many nights wondering "why" and I think the hardest part is the thought that I may never find the answer or the cure for these two problem. To say the least, it has left me bitter and angry. I hope that progress can be made and relief can be found...someday.

DOES ANYONE KNOW A DOCTOR IN THE DALLAS,TX AREA THAT SPECIALIZES IN VULVAR PAIN?

slg@win.bright.net Sherry

I just saw my gyn yesterday and received the news that I have one more ridiculous disease. Good grief! Thank goodness for web sites like this one or my information would be fairly sparse. I had a hysterectomy twelve years ago due to endometriosis. I had the endometriosis from the time that I was fifteen years old. Can't remember ever having a period that didn't incapacitate me. About eight years ago I began having symptoms of fibromyalgia. It seems that no matter how well I take care of myself (and I do take care of myself extremely well), the least amount of stress causes me to have a flare up of something. Two years ago I began having menopausal symptoms ( I had kept one ovary). Last year I was put on premarin and about fourmonths after that started having chronic yeast infections which caused my gp to take me off the premarin. My gp sent me to the gyn because she had exhausted all reasoning behind the yeast infections and I started to have negative cultures. At this time I experience itching around vulva and rectal areas, where apparently I have lesions. So here I am. Interetsingly enough, I saw a magazine article at the gyn's office talking about the eight things successful women do to relieve stress. I've been doing them all and more for the past five years. Yoga, walking, friendships...but I recently had a move from one job to another...and a less stressful one at that and it seems that was all it took. Well, that isn't entirely honest. There have been other stresses, but gee golly, I've always felt like I thrived on some stress and anxiety. Does anyone out there have fibromyalgia and this thing too? Also, I would like to know more about how people have tolerated the amitripilene as far as drowsiness goes. And...info on the low oxalate diet. Thanks everybody for sharing,

I also am in the position of nearly all of you.... Vulvodynia... and nearly going out of my mind with pain & itching. I can't seem to find anyone to listen. I've tried so many doctors, and they all say the same, it"s not my field of expertise. And that seems to be the end of the conversation.

I'm sorry for you all, as I live in Canada, and have a list of doctors and medications that almost makes me a physician on this subject. I've had it for four years now after a drastic car accident.

Someone must know, before we all commit suicide with the pain.....

Prayer may be our only answer... (and so far, that hasn't helped me). If you know of anyone in Seattle, or area, or in Western Canada, PLEASE, email me, PLEASE.....

I have been suffering from vulvodynia for three years. I had it mostly under control with a nystatin cream which I applied twice a day. A year ago I went to live in Korea and after a month of being there my symtoms disappeared. About a month after I returned to the United States my symtoms returned. Then three months later I went to Africa on vacation for two months. My symtoms again disappeared within a month. I believe that this condition, at least in my case is related to the high number of preservatives used in the food here in America. I am now starting a new diet based on foods that are freshly prepared and am only drinking bottled water. I have ruled out pesticides on produce, which many of my friends have suggested as a cause, since other countries use as much if not more pesticides in their food production. If my new diet does not work I will be forced to move to another country. I hope this helps someone else.

I have all the classic symptoms of vulvodynia that have lasted and been misdiagnosed for about a year and a half. It started with several severe bladder infections where I took Sulfa on a daily basis. I then started having what was first treated as gardnerella then yeast with very short term results until the next flare-up. Sexual intercourse has become almost impossible as my vulva swells, burns and sometimes bleeds to the point where it is unbearable. When the swelling and pain subsides(which may take days)I still may have burning and sometimes a discharge that makes me feel less than "fresh". I have also become very depressed. I do have other issues in my life that have me extremely stressed. I am willing to try anything to help with this problem if I only knew what was causing it. I copied some information so I could show my doctor and hopefully try some of the suggested treatments otherwise I will be searching out a doctor familiar with vulvodynia. It has helped reading this guestbook and knowing I'm not alone. Ann at gmprior@micron.net

I have read everything posted to this guest book with great gratitude and interest, but also sometimes with great concern when it seems so many women have suffered for years. I also notice that a number of people feel their problems may be related to injuries to their tailbone, but it seems no-one has written in to relate their present symptoms to direct injury to the vulva, as I'm certain mine are. My problems started 18 months ago, a short time compared to some on this list, but the results for me have been so devastating that I'm desperate to hear about anyone with similar experiences. I'm 44 and a State Registered Nurse in an English hospital, with 17 years experience, 6 of them on an Obs/Gyn ward, and yet I still find any kind of information or advice very hard to get.

The pain and trauma that have come close to ruining my life began on my 43rd birthday. I'd been out for a meal with some of my colleagues from work, and was on my way home with bags of presents and shopping for a special dinner I was planning with my husband later in the week, and took a shortcut to get to my bus. The city was full of light and people, and although this street was quiet I didn't worry as there was a group of teenage boys and girls laughing and drinking in a doorway. One of them stopped me to ask the time, and then they surrounded me and started grabbing at my shopping bags. I only started to panic when one of the boys seized my arms from behind and the others were all over me going through my pockets, pulling of my watch. One of the boys grabbed and squeezed my breast. I was almost too overcome with shock to shout out, but as I opened my mouth to try I was punched in the solar plexus and fell back sprawling. Once I was on the floor, they began beating me in earnest. As I put up my arms to protect my face and head, I was spat upon, kicked in the ribs and kidneys, and the boy who had squeezed me literally stamped on my left breast. I started flailing my legs and arms to try to get them off, and now began screaming as loudly as I could. They began to panic and started running off, but in the last second the taller of the two girls involved kicked me as hard as she could in the vulva. I was only wearing light lycra jog-pants, and she had heavy-soled boots on. I have had two eye operations and three children, but I have never experienced such pain. I seemed to feel and remember nothing but pain for hours afterwards, and the intensity of it only got worse with time, only being relieved with opiates at the hospital.

I developed an enormous hematoma, which grew so large that they considered operating on it, and was catheterised for 11 days. Even with the strongest analgesia the pain and trauma of even being examined was truly terrible. Several blood vessels in my clitoris had been ruptured by being trapped against my pubic bone, and full resorbtion of the bruising and clots took weeks.

Medical care of my immediate injuries was of the best, although in my case I had the embarrassment of being examined and nursed by friends and close colleagues. But in a way the worst was to come, as after I went back home and eventually back to work, with all the physical signs of injury thankfully resolved, I still suffered from continuous, burning and sometimes crushing pain in the vulva and especially around my clitoris. It kept me awake at night, and the intensity would fluctuate from a constant nagging reminder to stabbing, shooting pains that made me catch my breath and often forced me to sit down. Walking, or activity at work, made all this worse. The situation is little better now. Worse than all this is that my married life is in ruins. My husband, aside from being in a constant state of suppressed anger that the police investigation came to nothing, has been fantastically supportive and patient all this long time, but each of the half-dozen attempts we have made at sex have been disasters. I find it very hard to become aroused, and if I do it only brings on severe clitoral pain. I worry very much about the future of our relationship.

I have spent many, many hours, and also much money I can ill afford, on trying to obtain treament or help; the results of this have been so depressing, with all opinion agreed that my vulva is now physically completely recovered. Perhaps because I am a nurse, everyone has been very careful to avoid telling me it's 'all psychological', but their minds are not hard to read on the issue. Friends at work, too have made things worse after an initial bout of silent sympathy, by trying to cheer me up making light of things, even asking if I'm glad my sex life has got back to normal. It never has, and I miss my husband very much.

The only person who seems to have understood much is another friend who had a similar (though apparently not as bad) injury to her vulva from a fall onto a chair-back while climbing to reach a shelf. She only told me her story months afterwards, and as an embarrassed confidence. She gets chronic pain in the labia, and I worry all the more as her marriage ended in divorce.

Has anyone out there had an experience like mine? Or any advice? I have to use a friend's computer to send this, but will keep coming back to these pages in the hope of finding someone who has shared anything like my troubles, and who I hope has found ways to deal with them.

Marie --

I'm also a nurse (in the U.S.) and I have had vulvodynia for over 3 years. Mine developed along with fibromyalgia and started with what seemed to be a vaginal infection. I have not specifically heard of vulvodynia being caused by a vulvar injury, but many women have developed it after childbirth, which could certainly cause injury. I'm sure there are also other women out there with similar experiences to yours. I don't see why the treatments usually used for vulvodynia wouldn't work for you. There are so many different possible causes, but most women seem to respond to the same treatments, regardless of cause. I'm married and this disorder has greatly disrupted our relationship. My husband and I are in sex therapy and that has helped quite a bit. I strongly encourage everyone with vulvodynia to seek counseling. No one should have to handle the emotional ramifications of vulvodynia without professional help.

I don't like to post my email address, but it is on my website. Please feel free to email me privately. I am almost pain free from the combination of nortriptyline (tricyclic antidepressants are often used for treatment of chronic pain because of their effect on nerve response), Estrace (.1% estradiol) cream, the low oxalate diet, calcium citrate supplements, N-acetyl glucosamine supplements, and various lifestyle changes listed on my website. Don't give up hope. There are many treatment options. I haven't even tried biofeedback yet, but I've heard many success stories from that as well.

I hope it helps to know you're not alone in all this.

Katie F.

I have just learned so much about vulvodynia within one day by reading this Web Site. I delivered a baby on November 27th. My problems started about the 4th week after delivery. My Ob/Gyn kept telling me I hadn't healed yet, but the pain felt different from general soreness.

Every week I would return to my Ob/Gyn and she would examine me, but never could figure out the source of the pain. It was really frustrating, because she kept focusing on my psychological health, and not the source of the pain. The pain was so severe that I had to hire a baby-sitter to watch my infant while I sat in the bathtub during the evenings. On my last visit to my Ob-Gyn, she saw a stitch which had not dissolved from the tear. She removed it and referred me to a specialist if the pain continued..

Three months after I delivered, this new doctor found the cause of the pain immediately. He used a colpsoscope (sp?) and found a lesion in my vagina. He prescribed Estrace three times a day. Two weeks later the lesion seemed to be getting smaller. For three days, I was pain free. But now I have the symptoms about which I am reading on this Web Site.

If anyone has experienced vulvodynia after delivery of a baby, pleas contact me at trippe@ma.ultranet.com.

Thank you and I hope I am using this guest book correctly.

Barbara

I have suffered 5 years, countless doctors, 3 urologist, 2 gynacologist.After having major surgery for a etopic pregnancy with a epidural nerve block I developed vulvodynia.On top of painful urination one urologist stretched my uretha-totally unbearable. I finally found relieve totally from a woman urologist fresh out of med school with up to date info. I tried Elavil, but it din't work. But IMIPRAMINE HCL 25mg Totally erased all symtoms within a few days. I thank the lord I am better after 5 long years of worrying , thinking I might have cancer, diabeties ect. I wonder if the epidural or surgery caused nerve damage.I highly reccomend this IMIPRAMINE!!!!!!!!!!

My problem stated a month ago. I had a cervical biopsy (that check out ok for now) but used some soap and got a rash on the labia major, doctor prescribed Globetasol Propionate ointment and that cleared up. A few days later a had inflammation in my labia minora (inside lips). It has been five weeks now and hardly any improvment. Last week my doctor found a bacterial infection and I was on Cleocin for 7 days. Things aren't as bad as they were, but still not much improvment. Could soap really cause inflammation on lips that would not improve after 5 weeks? I have done all the no dye, double rinse, ect. that is recommended. I'm hoping after (and if) this clears up I will be done and I'll chalk it down to the soap. They say not to use soap anyway, that you self-clean and you should just use warm wter and your hand to clean inside.

Anyone ever have a problem with soap? Is 5 -6 weeks too long for inflmmation not to get better? Please e-mail me at nickels@dataplusnet.com Thanks!

Hi, My name is Rachel and I am an undergraduate at Brown University. I am currently involved in a project on vulvodynia/vulvar vestibulitis. My group and I are putting together an informational packet on these disorders for the National Women's Health Network,an organization that, among other things, distributes information to women on various health concerns. We are looking to include the personal experiences of women who have been dealing with VV or vulvodynia in our packet. I was wondering if anyone would be willing to correspond with me over email about their own experiences with this problem. I am looking especially for women's experiences with various treatments, what has worked, what hasn't, as well as coping with vulvar pain during pregnancy and delivery. Any information or experiences would be helpful. Thanks, Rachel

After 6 different physicians cervical colposcopy, cervical cryosuurgery and a hysterectomy at 37, I was finally diagnosed with vulvodynia and have been on Elavil 75mgs for 5 months. The relief is welcomeded but not complete. I am an RN and feel frustrated with the lack of medical knowledge and concern of this problem. Lori at rabacon @bellsouth.net

I am 26 years old and have had a similar skin condition of the vulva, it is called lichen sclerosus. This condition causes the skin to be white (like milk), thin, very itchy, and causes many popped blood vessels during sex and when wearing tight clothing. One side of the vulva is now fused together, it looks as though it has been glued or sealed. I was diagnosed at the age of 19, I had a biopsy done on a clotted blood vessel on the vulva. I was instructed by my gyno to use a 2% testosterone cream which I used almost every night for 7 years. I was unaware of the terrible side effects it was giving me, My clitoris and vulva were congested and swollen with blood, it was giving me a turned on feeling everytime I urinated or my clothes rubbed wrong - it was gross

I also began having MAJOR PUBIC PRESSURE and frequency in urinating - all 15 urine cultures over 4 months came back negative. I had a cystoscopy (perfectly normal bladder) and my urethas stretched, 12 days berfore my wedding. NOT A NICE EXPERIENCE. Finally after 6 months of thinking I was crazy, I went to a urologist in NYC who gave me a different pelvic exam - he checked my pelvic floor muscles and found them to be in major spasm. Since January, I have been receiving electrical stimulation at my urologist office and have now started pelvic floor rehabiliation at Kessler Institute. This has helped the pressure and frequency. However just recently I have started having major burning of the vulva. I was told this is due to the hypersensitivity of the skin, because it is thinned out and the pelvic muscles are so tight. I am hoping the continued use of the e-stim and biorfeedback will clear it up. I have purchased the unit from INNOVA so I can use it at home every day.

I get so FRUSTRATED TOO! I am so young, and a newly married. My husband has been so understanding, but it is getting to me emotionally. Sex has been almost impossible, needless to say very tight and painful. And now it has been burning, not only with sex, but when I urinate and wipe. The buring lasts for hours. I have noticed that the last two burning episodes came 1 week before my period and lasted for about 5 - 6 days. Could this be the start of vulvodynia? I am currently using vitamin e liquid every night (no more testosertone), can buy stock in aveeno soap and bath solution, and now have just been given Clobetasol Propionate Cream 0.05% for the burning.

Dr. Glazer thanks so much for this website, it has been so helpful. I can't believe how many people have problems, especially women my age. Could long tem use of testosterone cause pelvice floor problems, or problems when I want to become pregnant? Should those of us in child bearing years be using so many steroid creams?

I recently posted a question to the Fibrojmyalgia newsgroup in regards to Lichen Sclerosus and got a response from a person with Vulvodynia who suggested that I get in touch with this website. I had not heard of Vulvodynia and my dermatologist did not say anything about this ailment. I have had this condition all my adult life. For years, I can remember vulva itching and scrating and getting prescriptions of Kenacomb cream (beginning age 16 or thereabouts). For years menstral pads were awful. They would make my skin burn and itch until I switched to tampons. These however could only be worn on light days and I had very heavy periods for three or four days. I did not get diagnosed with Lichen Sclerosus until the late '80s and the dermatologist did two biopsies. Both came back negative. She did these tests because the veins just inside the lips are very black or dark purple. She tried testosterone in vaseline for a topical cream. It helped for a while. Then this past year, I began having bad itching and burning and my doctor sent me to a new dermatologist, who prescribed betamethasone for about and month, then switched to a 1% cortisone in vaseline. This mixture helps a little, but I find the betamethasone better. The doctor does not like me to use it often as the side effect is that it makes your skin thin. I have also found recently that unless I use a vaginal juice, like Astroglide, I do not enjoy sex. I want to tell you also that I have had Fibromyalgia for about 15 years and just wonder if all is connected by way of the immune system being out of wack. Could you please tell me if in deed, there is a test to determine if I have Lichen Sclerosus or Vulvodynia? Thank you for your time.

I recently posted a question to the Fibrojmyalgia newsgroup in regards to Lichen Sclerosus and got a response from a person with Vulvodynia who suggested that I get in touch with this website. I had not heard of Vulvodynia and my dermatologist did not say anything about this ailment. I have had this condition all my adult life. For years, I can remember vulva itching and scrating and getting prescriptions of Kenacomb cream (beginning age 16 or thereabouts). For years menstral pads were awful. They would make my skin burn and itch until I switched to tampons. These however could only be worn on light days and I had very heavy periods for three or four days. I did not get diagnosed with Lichen Sclerosus until the late '80s and the dermatologist did two biopsies. Both came back negative. She did these tests because the veins just inside the lips are very black or dark purple. She tried testosterone in vaseline for a topical cream. It helped for a while. Then this past year, I began having bad itching and burning and my doctor sent me to a new dermatologist, who prescribed betamethasone for about and month, then switched to a 1% cortisone in vaseline. This mixture helps a little, but I find the betamethasone better. The doctor does not like me to use it often as the side effect is that it makes your skin thin. I have also found recently that unless I use a vaginal juice, like Astroglide, I do not enjoy sex. I want to tell you also that I have had Fibromyalgia for about 15 years and just wonder if all is connected by way of the immune system being out of wack. Could you please tell me if in deed, there is a test to determine if I have Lichen Sclerosus or Vulvodynia? Thank you for your time.

Have any of you been so upset with this condition that your blood pressure has gone way up? I use to have the normal 120/80 but it has gone up to 142/82 and probably still rising. Its like I can't control the stress level! I know this is not a life-or-death illness, but just knowing there is as yet no cure seems to make matters worse. Even reading everyones own problems seems to make it worse as some of you are in much great pain than I am now and worry mine may get worse. Feel free to e-mail me at nickels@dataplusnet.com Mom

I am a 31 year old woman who was diagnosed with so many gynecological disorders it makes my head swim just thinking about it. I have had the burning and itching and excrutiating pain for many years, and no one could ever tell me what it was or why it was happening. I had countless urine tests and yeast infection tests and tests and tests and tests. I have had a total of 5 operations on my reproductive organs the last of which was a total and complete hysterectomy. The burning and pain did not go away.

In tears I went to the gynecologist demanding to be seen after the hysterectomy I had to see the chief gynecologist because my regular gynecologist was off that day. A pelvic exam showed nothing, but then he said it appeared that I was suffering from a little known condition called vesticulitis. He did not give me very promising news about this condition though. I read what little I could on this condition and applied the cream, yadda yadda, yadda.

I do not seem to suffer as much as I used to from it, and do have occasional flare-ups, but I think for me just knowing that I was not going crazy or imagining this pain made a world of difference. I am very scared though as I have recently found out that I am also HIV+, and have been for at least 10 years. I am not sure if the HIV has any effect upon this condition and I truly do fear that the lower and more beaten my immune system become the more intolerable the pain will be. I know, live for TODAY.

I do not take many prescription meds, and treat my HIV with natural therapies and the like. I was taking 40 mgs. of Nortriptyline for chronic pain but have been weening myself off of this medication because of the big weight gain I have experienced. The Nortryptilline has helped tremendously for my chronic pelvic pain, and is also of benefit for the treatment of neuropathy, another condition I am experiencing related to my HIV. Now I read that this medication is beneficial for Vulvodynia, and am afraid that I will be stuck taking this medication forever just to live somewhat"pain-free."

Yikes! I did not mean to rattle on, but I have so much in my head. I am so relieved to find this site and know I will be able to get something from here, and hopefully be able to give something back.

God Bless All of You.

JoAnn

I am 36 and suffering from this horrible disease. I also suffer from severe endometriosis and infertility. I recently stopped using fertility drugs. I used them for the past 2 years. During the past 2 years, I have also used hormonal treatments (Danazol) to help shrink my endometriosis lesions after a laparoscopy.I had cryrosurgery in June '97 on my cervix (due to HPV). Idid an invitro (IVF) cycle in Sept.'97 . My recent experience with vulvodynia began on Xmas morning . I thought I had a yeast infection so I began treating it with Terazol cream. From then on my life has been a nightmare. If I could choose I'd rather suffer the endo pain and even the infertility but this vulvodynia experience has certainly damaged my spirit. I am not the same person I was 117 days ago. I have beeen to seven doctors in the past 4 months. The four doctors I saw in my immediate area were clueless and treated me for vaginitis. I felt like a bother to them. I was originally diagnosed with a yeast infection. Then all the cultures and tests came back normal and I was told that nothing was wrong. Each doctor prescribed a cream to use. They all made matters worse. I suffer from itching, burning, inflamed vestibule,redness,discharges,etc. This is not normal. No one would listen. I then made appointments with doctors at teaching hospitals in Philadelphia and traveled the 90 minutes to seek help. I was again told that my tests were negative. One doctor in Phila. presribed Claritin and Doxipen along with a cream. I cannot use any type of steriod cream. It hurts. I complained that I was not seeing much improvement . I was then diagnosed with a bacterial infection. Cleocin was prescribed. One dose of it and the pain was excrutiating. I immediately discontinued use and was then referred me to a dermatologist . It was the resident dermatologist who suggested that I have vulvodynia. I am continuing to take Doxipen each day. Some days are better than others. The only thing I accomplish is going to work when I don't have an appointment. Other than that I can do hardly anything. I take sitz baths every day. I hop right in after I rush home from work. Iam looking for support and the name of any medical professional who is willing to help me. Any sugesstions of anyone in the Philadelphia and surrounding areas? Iam concern about the cause of this disease but right now I am more concerned with proper treatment. I am also interested in learning if there is a relationship between vulvodynia and 1)endometriosis; 2)fertility drugs (high doses);3) recent surgeries (egg retrieval and cryro);4) HPV .Thanks for listening and your support. Please help me.

Where can I get a copy of the oxalate diet? Is it on line anywhere? Thanks,

Nancy (and anyone else who's interested!) --

My web page includes guidelines for the low oxalate diet. It's at:

Katie

Hmm, Is lichen sclerosis part of vulvodynia? From the comments, I kinda think so. I've had l.s. since about 1978 and over the last few years have had stiffness in my whole body. The latter I can reduce by not eating sugar, not much meat, reducing any acid ash producing foods. Today I have just learned about the low-oxalate diet. Maybe that will help ... as I don't seem to do too good with peanuts, spinich, chard, wheat, etc. Where is a list of the high oxalate foods? The lichen sclerosis is somewhat helped by testosterone cream. When I tried estrogen and cortizone creams years ago, there was no help, if fact, my symptoms got worse. Lichen sclerosis mostly bothers me for a couple of days before I bleed. Lots of itching, dryness, parchment-like skin, and some pain ... Thanks for having the site and comment area ... Kaye

Hmm, Is lichen sclerosis part of vulvodynia? From the comments, I kinda think so. I've had l.s. since about 1978 and over the last few years have had stiffness in my whole body. The latter I can reduce by not eating sugar, not much meat, reducing any acid ash producing foods. Today I have just learned about the low-oxalate diet. Maybe that will help ... as I don't seem to do too good with peanuts, spinich, chard, wheat, etc. Where is a list of the high oxalate foods? The lichen sclerosis is somewhat helped by testosterone cream. When I tried estrogen and cortizone creams years ago, there was no help, if fact, my symptoms got worse. Lichen sclerosis mostly bothers me for a couple of days before I bleed. Lots of itching, dryness, parchment-like skin, and some pain ... Thanks for having the site and comment area ... Kaye

Howard, I would really value your opinion - I have been diagnosed with 3 sacral cysts that are all on the nerve roots, one of the nerves being the pudendal nerve. The cysts are also on the left side. My pain is all on the left side and consists of extreme sharp pain when touched or moved - therefore walking is difficult. Sometimes the pain is also burning. The pain is around the clitoris and around the vagina. My doctors are not 100% convinced that the cysts are causing the pain, but say that it is a strong possibility. What are your thoughts?

Has anyone gotten a 24 hour urine collection test done to check for the oxylate level and the dr says it (20) in normal range? Would "normal still be too high for someone with vulvodynia? Has anyone done the urine testing with the Pain Project (kit is $350) Scientific Connections (Clive c Solomons)?

It seems like all of my problems started after a gall-bladder operation in 1993. I don't know if they damaged nerves in there when they operated or what. They put some of the instruments in thru my belly-button to remove the gall-bladder. A few months later my back started hurting real bad. After two years of doctors not finding the problem, a freind read a magazine article on interstitial cystitis (inflammation of the Bladder walls) which sounded right. A good urologist confirmed this. Sometime after that I started having vulvar burning. All my problems seem to be helped when they're at their worst by a strong anti-inflammatory, but my stomach can hardly stand them anymore. I sometimes find relief by drinking baking soda water. I also suffer from chronic yeast infections which defy all treatments so far and they definitely make it worse. Have tried several herbal things but not much help. My husband is very understanding but sex is very debilitating causing extreme burning and severe fatigue. This burning at times feels like its in my stomach now and sometimes goes all the way down my legs and makes my feet burn like crazy. I also cannot stand to be too warm, like covering up much at night. I also was hoping to find some remedies from this board. Low oxylate diet sounds good but anti-depressants did not relieve pain-I've suffered from depression for many years and have been on different anti-depressants for about 10 years now. Anyway, I'm trying not to let it get me down. Thanks for this board.

Was having a bad time with the constant feeling of pressure on my bladder to the point where it was hurting about 80% of the time. Talked to my doctor, she asked me to give the diet and calcium citrate a try...have been doing that faithfully, however, I also talked with my chiropractor and he sent me to his partner who does the Upledger Cranial Sacral treatments that John Upledger, D.O. teaches. Marvelous results as far as the bladder is concerned. Wow...I had relief in the first day. I have gone back for my second treatment and will go back probably four more times. I still have the discharge and the itching and sometimes the burning, but the pressure was really distracting and probably the most painful for me. It is good that I have found something to ease it or I am sure I would have become worse all the way around. It is so easy to let the stress make more pain, but I feel like I have a handle on this part of it anyway. Just thought I would pass this information along to everyone. And thanks all of you for being here. Sherry

I'm 36 yrs old and have been experiencing burning, itching, pain in the vulvar and anal area for 2 yrs. I was initially treated for a yeast infection 2 yrs ago and have had problems ever since. I was told to buy otc yeast medications (which I did for 1yr, very expensive and didn't help). I was also told that I had bacterial vaginosis. Needless to say I was repeatedly treated with metrogel and cleocin. Regardless of what infection the doctors were telling me I had, nothing seemed to help. After another positive yeast culture I was prescribed terazol for 1 month. No wonder my vulva was sore. For one straight year I injected creams and suppositories almost every day. I finally took myself off of all meds. I'm still having problems and just don't know what to do. I started seeing a vulvar pain specialist about 6 months ago and he thought I might have VV. Saw a physical therapist and she felt that I didn't have VV. I've done it all, calcium citrate, elavil, claritin, etc. The act of intercourse doesn't hurt, it's the day after when my skin becomes inflamed and irritated. Was wondering if any other women felt their vulvar disorder was initially caused by yeast? This website is wonderful. I finally feel like I can communicate with women who don't think I'm crazy.

After suffering with Vulvodynia for three years or so, I've finally found about 75% relief. The relief began when I started to eat yogurt every day; I have not had a yeast infection since then (about one year). Prior to that, I developed a yeast infection each month. The other thing that helped was simply leaving things alone! (Meaning, no sex for six months, no topical medications, oral meds, citrate, biofeedback, or myofascial release). I truly believe that most of the treatments made me worse. Has anyone else had this experience?

This site has been a wonderful find. I wish I found it sooner. I have been suffering for over 4 years, and have tried everything under the sun and have been through too many doctors to count. All with no success. The pain has been extremely bad for the past two years, and my hope and happiness have faded dramatically. For those of you suffering for many years with little or no relief from treatments, you may want to research or ask your doctor about a procedure called a vestibulcetomy. I just went through this about a month ago, and my pain is gone. I'm not going to say I'm cured, I know I need to give it more time to really know for sure. My doctor uses it only as a last option, and has very strict guidelines. He looks for very specific symptoms such as point tenderness, and chronic inflamation. Although my pain was felt through out the vaginal opening, it was stemming from the Bartholins glands just below the hymenal ring. The vetibulectomy removed the irritated skin from around the opening to the vagina, and as I said before, this is the longest I have been pain free in years. While I am not recommending anyone to jump into surgery, I just wanted to let people know about this, because after suffering for over four years, January of this year was the first I had heard about it, and since nothing esle was helping, I figured I had nothing to lose. I only wish I had heard about it earlier. I wish all of you out there the best of luck, and I hope you can find something to help you live a pain free life once again. Feel free to email me with any comments or questions.

I have discovered that my body does not dissolve sutures and instead of my gyn performing a laparoscopy where they remove the sutures/granulomas they have gone in and cut them out with a laser. I've been seeing a neurologist who has diagnosed me with pudendal genito-femoral neuralgia (nerve damage) from the irritation by the sutures, infection of the sutures, and repeated surgical insicions of the vaginal cuff itself. She has put me on anti-convulsant medications (depakot