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CommentAs co-designer (along with Dr Perry) of the Vulvodynia web site, I am happy to see theenormous response. I hope that people continue to enjoy the site and find the informationthey need quickly and easily.
CommentJust testing to make sure the new guestbook is working. Wishing everyone Happy Holidaysand a pain free New Year.
CommentHi- It's been quite awhile since I wrote in here, but I saw my gyn lately (actually thenurse) and she prescribed a topical ointment called Nystatin and Triamcinolone AcetonideOintment, USP. My main symptom with vulvodynia is itching a I use the ointment when I getflair-ups. Also, these last few months my peroids have been more intense: heavier andcramping for longer, even cramps when I'm not on it. I'm only 20, but I think I may haveendometriosis. I also get constant yeast infections, which is another symptom. I will seemy gyn in 2 weeks. I'm wondering; is endometriosis common in women with vulvodynia? Doother women with vulvodynia have constant yeast/bacterial infections and/or intense,painful periods?
CommentHi, I have suffered chronically from vulval pain and a burning sensation for almost ayear now.I have had so many tests that its beyond a joke now. Also I suffer from lowerback pain and am currently being treated for this condition as well. I have had treatmentfor thrush even though the smears were negative, been on anti-candida diets, months ofNizoral and tryptonal to try and alleviate this horrible condition. My local doctor put meonto this website on the hope that I may find out some more information on vulvadynia. Ihope someone out there can give me some good tips. I am desperate!!! If there is anyoneout there from Sydney Australia with the same problem please conttact me.
CommentI have been dealing with pain and recurrent bladder infection all of my life. I am 45years old and in the past few months have gone to the gyn and urologist over and overagain. It all started with a rx of penicillen given to me for an infected tooth. Now Ihave been diagnosed with a third bladder infection with yet another bactria, I can't evenspell (clipsiellia?). This one is not sensitive to anything but cipro or macrodantin. I amallergic to macrodantin I get violently ill. So I have to try yet another round ofcipro.(very expensive)I also had a bx of my vulva and it tells a story of lichen simplex.I have it on my scalp and my vagina. I wonder is this something you can transmit toanother and can it get worse. What is the right course of tx. I dont' want to test a bunchof things and all make it better only to later make it resistent. Any answers I wouldreally appreciate them.
CommentHello, everyone! Every time I read those guestbooks, my eyes are full of tears. Butit's the only way to be informed. My story is quite similar to the most of posted. I havebeen suffering from vulvodynia for one year, so I didn't get to the antidepressants phaseyet. The only thing that worked (but temporarily) for me was boric acid. My first relieflasted for about 3 weeks. It was in July. The second relief, which is just ended(unfortunately) happened after I used Gyno-Travogen Ovule (Isoconazole nitrate 600 mg).This anti-fungal is only used in Europe, as far as I know. Again this incredible,exciting, unexplainable piece of happiness only lasted for 2 weeks. I have severalquestions, maybe somebody has the same specific problems: 1) Has anyone experienced somerelief from acyclovir, famvir, etc. What regimen, if so? 2) Nobody tells about clitorisarea and it seems to be the worst spot (ironically) of pain for me. I have a strange smallred bump and red swollen surrounding area on one side. It located just below clitoristowards vagina. It appeared first after I had Doxycycline about 10 months ago. When I haverelief this area turns to look more normal, but it still there. What can it be? 3) My pain"travels". Sometimes it feels mostly in this red area (see above), sometimes itshifts completely down to the opening. I also experience very devastating pain around myanus and deep inside the rectum. Who has any connections with hemorroids? Maybe it is somelink? My last question for this time is about doctors? Does anyone know the best ones inNYC/Brooklyn/Long Island area? I am really proud of your strength, patience and energy tofight with this awful condition. Where do you get some? I am afraid to loose the hope.Thanks to anybody who answers my questions.
CommentI am 21 years old and have suffered from vulvur burning and extreme redness for fivemonths. I have been to 5 drs who have ruled out yeast infections and STD's. I have had onebiopsy which was "unremarkable" but am having a second biopsy done tomorrowbecause the first biopsy was not taken from the right area. I have two questions. Do mostvulvodynia sufferers have extreme redness in their entire vulvar area?, and does anyonefind that their pain worsens as the day moves on, especially when the area is damp? I havefound that Gold Bond powder keeps the area dry which minimizes the pain. Please write meback, if you get a chance.
CommentI recently discovered your web-site when I was complaining to a friend of mine that hashad terrible vulvar problems. She informed me about different web-sites with informationand told me that my problem was not psychological and that I needed to know that millionsof other people are experiencing the same thing as me. My situation began about 8 monthsago when my boyfriend and I were in Hawaii on vacation. We had a very active sex life andit had always been pain-free with everyone I had ever been with. Never ever had a problembefore and had a very high sex drive. However, I began getting urinary tract infectionsafter intercourse (which I had always thought was because I didn't go to the bathroomright after sex), so I decided to get a check up to make sure I didn't have a largerproblem. I took the over the counter urinary tract medications to stop the immediateburning sensation and then thought that was it. However, when I went to Hawaii, we triedto have sex and it was incredibly painful. This had never happened before so I didn'tunderstand why. I thought maybe I had a sist or something large blocking the area becauseit felt as though there was no possible entrance for my boyfriend to penetrate me. When Iwent to the doctor she said everything was fine with me and that we should continue tohave intercourse. We have tried and tried and almost every time it is incredibly painful.I don't know if I actually have the problem that has been referred to here, but itcertainly sounds like I have some of the symptoms. I don't have pain any other time butduring intercourse. We try lubricant and it helps but not good enough. I feel very raw andincredibly tense right before he is about to penetrate me. I am not sure if it is nowpsychological - I started questioning if my boyfriend even turns me on anymore. There weretimes at the onset of the problem where I had pain going to the bathroom where it wasn'tas easy urinating as it used to be. I kept thinking that it was stress or that I didn't goto the bathroom often enough which made it more painful than other times. My doctor is nohelp and she doesn't know what to say. All she told me to do was look for information onthe web. I guess that's how I got here. I really need to find a doctor in the L.A. areathat is familiar with this problem so I can at least speak to someone else and get asecond opinion. Do you know of any support groups or doctor's in L.A., Beverly Hills,Brentwood, or nearby. Thanks for listening. I wish all of you out there with much worseproblems lots of love and prayers for a cure. If any one has a similar problem where you are only in pain during intercourse, pleaselet me know and I'll check back here over the next month. Thank you for your help! Jodi
CommentMy problem seems to only occur after sex with my husband. Then I have excruciatingpain,lasting for weeks. The last time we had sex was about 10 weeks ago.and I am just inthe last day or so- pain free.I have given up taking baths. Only take showers now, I pourwarm water over my vaginal area after urinating, usually cannot wear panties.I have cometo dread the next time we will have sex. I have seen 2 doctors so far. The first one, wasNo help. He said he saw lesions and blisters, and assumed I had herpes..which I did not.He never even bothered to call me and talk to me about what the problem might be. I neverheard from him again. So I saw another Dr.She seemed to know a little bit aboutVulvadynia. Although, I get the impression, I know more than her,just from reading thisweb board.She wants to do another test,called a Colposcapy.But I have read that the testis NOT conclusive, so have decided against having it.She prescribed Zoloft ,to be used asa pain inhibitor..I had a terrible response to that. I would never take that drug again.So now I am so distraught over what to do now.I feel like there are no answers for me. Icannot find a doctor who seems to care or understand. I am beginning to believe that I amgoing to be this way from now on. My husband is great about it all. But it is Not fair tohim- or anyone!There needs to be a definitive answer to all this. I sithere,depressed,angry,and confused. What did I do to deserve this?? What did any of us doto deserve this?? I have seen others mention prior tail bone injuries- I have that too.Also it was mentioned that perhaps there may be a connection with this and Hemmorroids- Ihave those too.I will continue to read this board and hope for the best
CommentI think I may have vulvodynia, my gyn. is not familiar with it. I've been tested for aninfection,Neg., but I still have irritation. I'm trying to stay on low oxalate diet,taking calcium citrate, ox absorb etc, Dr. Solomon's. Does anyone know any Drs. in thePhila. Pa. or Atlantic City N.J. area?
CommentMessage to Jodi (no e-mail address). If you get an address, e-mail it to me. I haveinformation for you. We can talk. Barb
CommentHi everyone, I am a 27 year old female from Wisconsin. I have been suffering from Vulvodynia for ayear and a half. I fooled around with many doctors and regular OB/GYNs before I finallyfound a specialist in Vulvar Disease. Her name is Jessica Thomason, and she is located outof Columbia Hospital in Milwaukee. I was diagnosed with a skin disorder called LichenSchlerosis. This disease causes chronic burning and itching in the vulvar area. I also hadVulvar Vestibulitis, which caused intense pain with intercourse. I am wondering if many ofyou with constant irritated skin don't also have Lichen Schlerosis. I haven't heardanother person mention it. But many of you sound like my story. Lichen Schlerosis can onlybe detected through biopsy. So, don't let someone just inspect your vulvar area and tellyou you don't have it (I made that mistake). There are many causes for Vulvodynia LichenSchlerosis is just one of them). If anyone has further questions, I'd be more than happyto help you. We really need to rely on each other for support. This is so devestating forall of us!!! We all go through the tears and the questions of WHY ME??? Thank you Dr.Glazer for this site. Now I know on my "low" days, that there are others outthere who can truely sympathize with me and provide me with answers. Hope I have helped atleast one of you out there. Nicole
CommentI have had vulvodynia since l980. I had a terrible time getting a diagnosis. One doctorbiopsyed me and afterwards I was unable to have sex. Found a very good doctor whopreformed perioneoplasty on me and the condition improved but seemed to move to the upperpart of my vulva and presented itself as tissue burning and pain with orgasm. I was thenput on elavil which has been a god send. I am symptom free, no pain or burning. My problemis I was diagnosed with BREAST CANCER. There are many tests I need to have and am going tohave because my life depends on it. But I am scared. I have to have a colonoscopy and aendometrial biopsy and am afraid even though my vulvodynia is well controlled it couldaffect it. I recently spoke to a doctor at Johns Hopkins in Baltimore in regards to thecolonoscopy and was told she herself did not know. Some things affect some patients andsome things don't. So I am in a bad position. She advised me to proceed with my tests andI am. Are there any vulvodynia patients out there who are also breast cancer survivors? Ifso I would love to hear from you so we can exchange notes. I would love also to hear fromanyone who has also had any of the tests I am talking about.
CommentI have had vulvodynia since l980. I had a terrible time getting a diagnosis. One doctorbiopsyed me and afterwards I was unable to have sex. Found a very good doctor whopreformed perioneoplasty on me and the condition improved but seemed to move to the upperpart of my vulva and presented itself as tissue burning and pain with orgasm. I was thenput on elavil which has been a god send. I am symptom free, no pain or burning. My problemis I was diagnosed with BREAST CANCER. There are many tests I need to have and am going tohave because my life depends on it. But I am scared. I have to have a colonoscopy and aendometrial biopsy and am afraid even though my vulvodynia is well controlled it couldaffect it. I recently spoke to a doctor at Johns Hopkins in Baltimore in regards to thecolonoscopy and was told she herself did not know. Some things affect some patients andsome things don't. So I am in a bad position. She advised me to proceed with my tests andI am. Are there any vulvodynia patients out there who are also breast cancer survivors? Ifso I would love to hear from you so we can exchange notes. I would love also to hear fromanyone who has also had any of the tests I am talking about.
CommentI am 20 years old, was diagnosed with vulvodynia a year and a half ago, and I am havingsurgery on Monday. I would love to talk to someone who has had surgery before then. Pleasewrite me, Thanks, ANA
CommentWell I am here to moan and groan again. I cannot get this pain to stop for very long.have totally giev up trying to find a doctor familiar with this problem. I have no healthinsurance.The one doctor I thought might be of help to me didn't seem to know any morethan I do. And I have only learned by reading Dr. Glazer's site.Thank God for Dr. Glazer.The dr. I saw wanted to perform some weird biopsy on me, which was going to cost $450. andI read about it and found that that particular test is almost never conclusive- so whatsthe point?? She had me try Zoloft(although I had never seen that drug mentioned on thisboard) Well I tell you-Zoloft does Not work well in my system. It was an awfulexperience!! After waiting 10 weeks since having sex with hubby- tried again and it wastooo painful! And just from a moment of that- I am now once again in Pain!!! I am about togive up! I am so tired of this and don't know how much more I can take.Have triedeverything I have seen mentioned here to try or to avoid. Even tried the Astro glide - butnope! Didn't work. Feel like a freak of nature at this point. I mean I don't know anyother married women friends who have this problem. They sit back and talk of their activesex lives with their husbands and I don't understand how or why this happened to me.Notsure what i am going to do..but hope some of you are finding relief from your pain . Andperhaps are having good luck finding a doctor with knowledge of this condition.I am at mywits end!!!
CommentMy problems started about 2yrs ago. I had an awful burning sensation after intercouse,on a regular basis. Usually my problem would show up a week before my period. At first Ithought it was a urinary infection, got tested and was negative. This went on for alomosttwo years. Used many different yeast infection meds with no relief. This Sept. I startedwith this and it hasn't gone away. I experienced burning, itching, dryness, pain in mybutt and legs vaginal rashes, I can't sit, stand, have sex, anything! I have been readingwhat everyone else is writing and think I may have found what my problem is. I was alsodiagnosed with endometriosis about 4 yrs ago. I have had so many different symptoms I notreally sure what I have. I would appreciate it if you, Dr. Glazer, could list all of themany symptoms you have heard of. Thanks, Tired of this problem in PA
CommentMy problems started about 2yrs ago. I had an awful burning sensation after intercouse,on a regular basis. Usually my problem would show up a week before my period. At first Ithought it was a urinary infection, got tested and was negative. This went on for alomosttwo years. Used many different yeast infection meds with no relief. This Sept. I startedwith this and it hasn't gone away. I experienced burning, itching, dryness, pain in mybutt and legs vaginal rashes, I can't sit, stand, have sex, anything! I have been readingwhat everyone else is writing and think I may have found what my problem is. I was alsodiagnosed with endometriosis about 4 yrs ago. I have had so many different symptoms I notreally sure what I have. I would appreciate it if you, Dr. Glazer, could list all of themany symptoms you have heard of. Thanks, Tired of this problem in PA
CommentTo my fellow vulvodynia sufferers, I am posting this in hopes to help those of you whoare dealing with this painful condition. When you are down and feel as if you cannot go onplease refer to this message on PEACE: How Would You Visualize A Picture Of Peace? There once was a King who offered a prize to the artist who would paint the bestpicture of peace. Many artists tried. The King looked at all the pictures, but there wereonly two he really liked and he had to choose between them. One picture was of a calm lake. The lake was a perfect mirror for peaceful toweringmountains were all around it. Overhead was a blue sky with fluffy white clouds. All whosaw this picture thought that it was a perfect picture of peace. The other picture had mountains too. But these were rugged and bare. Above was an angrysky from which rain fell and in which lightning played. Down the side of the mountaintumbled a foaming waterfall. This did not look peaceful at all. But when the King looked,he saw behind the waterfall a tiny bush growing in a crack in the rock. In the bush amother bird had built her nest. There, in the midst of the rush of angry water sat themother bird on her nest... perfect peace. Which picture do you think won the prize? TheKing chose the second picture. Do you know why? "Because", explained the King,"peace does not mean to be in a place where there is no noise, trouble, pain or hardwork. Peace means to be in the midst of all those things and to still be calm in yourheart." As we deal with the pain and tears of Vulvodynia let us all try to be like the motherbird and be peaceful in our hearts no matter how much physical turmoil we may be in. Keep the Faith, we will be VICTORIOUS over Vulvodynia one day. God Bless
CommentI AM A 35 YEAR OLD ALSO SUFFERING FROM THIS UNKNOWN VULVA DISORDER. I SAW MY GYN-OB FORA ROUTINE PAP SMEAR. I MENTIONED TO HIM AT THAT TIME I HAD SOME EXTERIOR ITCHING. HEPRESCRIBED ANTI-FUNGAL. DAYS WENT ON AND MY ITCHING SYMPTOMS WERE NOW BURNING SYMPTOMS. IWENT BACK TO HIM . HE MENTIONED I HAD A BAD REACTION TO THE MEDICATION. HE THEN PRESCRIBEDANOTHER TYPE OF ANTI-FUNGAL. THE SYMPTOMS AT THIS POINT WERE UNTOLERABLE. WENT BACK TO SEEHIM AGAIN. HE NOW PRESCRIBED HYDROCORTISONE FOR THE SEVERE BURNING. THAT ONLY MADE THINGSWORSE! AFTER THREE MONTHS OF CONSTANT BURNING HE WAS PUZZLED. HE RECOMMENDED THAT I HAVE ABIOPSY DONE. THIS WAS DONE WITHIN A FEW WEEKS. THE TESTING CAME BACK WITH CHRONICINFLAMMATION. HE SAID HE DIDN'T KNOW WHAT TO DO FOR ME. AT THIS POINT IN TIME I WENT TOTHE INTERNET TO GET SOME INFORMATION--THAT IS WHEN I FOUND THIS WEB SITE. I ASKED HIM IF IWAS SUFFERING FROM VULVADYNIA. HIS RESPONSE WAS NO. I ALSO WANT TO MENTION THAT I ALSOSUFFER FROM FMS. IN ALL THE YEARS THAT I HAVE BEEN SEEING A GYN-OB I NEVER HAD A YEASTINFECTION NOR HAD ANY TYPE OF VULVA BURNING OR ITCHING. I TRULY BELIEVE MY VULVA SYMPTOMSWERE FROM OVERUSE OF ANTI-FUNGAL CREAMS. I THEN WENT TO SEE ANOTHER DOCTOR WHO WAS ALITTLE MORE FAMILIAR WITH VULVA PAIN. I HAVE BEEN ON TESTOSTERONE CREAM ONCE A DAY, LOWOXALATE DIET, AND CALCIUM CITRATE. I ALSO WENT TO SEE A HERBALIST WHO HAS PUT ME ONKAVAKAVA , A NATURAL ANTI-DEPRESSANT. SHE HAS ALSO MADE UP A FORMULA CREME THAT CONSISTSOF ST. JOHN'S WORT, CALENDULA CREME & CORN STARCH. I AM HOPING THAT I WILL BE ON MYWAY TO RECOVERY! MY SYMPTOMS HAVE DECREASED AT LEAST 50%. IF ANYONE OUT THERE NEEDSINFORMATION, PLEASE FEEL FREE TO E-MAIL ME. GOOD LUCK TO ALL! LOIS
CommentI have been suffering from vestibulitis for 1 and 1/2 year. At first I thought it was ayeast infection, like everyone else here. I used monistat and it only made the itch worse.I went to my GP, who did cultures and found nothing either. He gave me flagyl, which madethings worse. I also tried diflucan, got worse. Finally went to a GYN who knows aboutvulvodynia and things improved. He prescribed Lidex, to use twice daily for 2 months.Things got pretty good with that but I still had burning about a week prior to my period,and during the first couple of days. As the weeks went along, my symptoms improved, I hadalmost no symptoms. However, I had my yearly pap smear 2 months ago, and there wasinfection on my cervix. I was treated with flagystatin, and it got everything startedagain real bad. The burning is very painful with intercourse, which I did not have before.I went back to my GYN, and he has me using Lidex again for 2 months. I find that thingsare improving once again, but I dont wear underwear and only loose sweat pants when I'm athome. If things are not better in 2 months, he will do injections in the vestibularglands. I was wondering if any of you had success with the injections and if it waspainful and for how long? Keep smiling, I know its hard but things will improve slowlyover time. Frustrated.
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CommentHello, I am new to this sight and have been reading the many letters from the othersuffers out there and I'm amazed at how many there are of us out there. I have hadvulvadynia for about a year and it has been the longest year of my life! I'm 31 and feelas though my life has been taken away from me. My pain started after using vagastate onefor what I thought was a yeast infection. It burned soo bad I called my OB at 3:00 in themorning. He told me to douch and use cortizone cream. Both made matters worse. Since thenI have been on different anti-yeast medications and anti-biotics which only make mattersworse. The pain is also rectal and makes sitting very painful. I have been on Dr. Solomonspain program but have had a hard time with the citate because of constipation. I amcurrently using the NAG. But have not had any results yet. My OB recently prescribed anestrogen cream (premarin) but the burning was untolorable after the first three hours Iuse it I have not tried it since. I have heard Estrace is less irritating but have not hadthe nerve to try that since the experience with the premain. I have no sex life and canhardly stand wearing underwear or pants. Has anyone had any of the same symptoms with theestrogen cream? Recently I have found blood on the tissue after I wipe. Does anyone knowof and Dr. in the Cleveland, OH area? I hope someday soon they find a cure for this!! Myheart reaches out for the many women who suffer from vulvar pain. We can all draw strengthfrom each other and hopefully help each other deal with the pain.
CommentThis is in response to Sylvie - I have had the shots of interferon in my bartholinglands and it did not help me. The case may be different for you because vulvodyniaaffects each woman differently. If you do get the shots, make sure that they use thecorrect size needle because the first few shots I had were given to me with a needle thatwas too large and those shots hurt terribly! I almost jumped off the table when they gavethem to me! I have found the most help by taking Amitriptyline, soaking in Aveeno oatmealbaths, and applying ice to the areas that are most affected by the burning irritation. Andof course, Prayer does help too! Good Luck to you, I hope the shots will help you. Shari
CommentHello fellow vulvodynia sufferers, My husband and I have finnaly been able to haveintercourse without the intense pain, burning, irritation, rawness, etc... (well it is notas intense) a few times in the past month. We are trying to get pregnant. Since it is sohard to have intercourse due to vulvodynia I am asking for advice from anyone who wassuccessful in getting pregant even though you have vulvodynia. Did you use the "basiltemperature method" or another type of method which helped to determine when you wereovulating? I have a 35 day cycle and need some advice. Please E-mail me with anysuggestions or information. Thanks! God Bless
CommentI hope someone can answer this, is lichen simplex chronicus considered vulvadynia? Isthere help for this problem, I have seen a dermatologist and the ointment is not helping.Someone please answer. Thank you in advance.
CommentI have been on Doxepin (an anti-depressant) for two years with minimal improvement. Ihad one two-month period where the vulvodynia actually went away, but then came back witha vengence. In the past year I've had 5 bladder infections (hadn't had one of those for 20years) and a few yeast infections. I also tried boric acid suppositories that made theburning worse. I guess I'm fairly lucky, I can have intercourse but pay for it for 2-3days after. I really think there is a hormonal connection here. Around the time ofovulation the burning gets worse and there's red inflammed skin around the opening to thevagina. I have an appointment in February with a doctor at Mass. General Hospital,recommended to me by Dr. Glazer. I had been feeling quite depressed when a GYN told methere was nothing she could do to help me. (A dermatologist was the one who put me on theDoxepin- she says it's stress related). I'll post again after my February appointment. Inthe meantime anyone wishing to talk, please feel free to e-mail me at the above address.Take care.
CommentHello folks, I've been suffering for 10 long years. I've tried so many differentthings. Only success was withCROMOLYN cream. It is topical and helps a little while using.A little relief is worth it, but I am (as are you) SUFFERING.
CommentMy dearest friend has been suffering with this disease for approximately 8 years. Ihave watched her become debilitated by pain and her life nearly consumed by the effects ofthe disease. I pray that the day will come soon that she will be free to live again.
Comment(our e-mail address is in my husbands name) Hello, this is the first time I havewritten. I have been reading all the letters posted on your site. I am amazed at thenumber of wemen that are suffering in so many ways. My problems all started almost 6 yearsago. The first gyn. I saw misdiagnosed me and did unnecessary surgery which I may neverget past emotionally. I was such a basket case at the time and I put my trust in someonewho I thought would know what to do to fix things. I will never be so trusting again. Ittook me almost 4 years (and being told it was all in my head) before I insisted on seeinganother gyn. who was finally able to help me a little. I thought I was going to go out ofmy mind trying to live with all the sensations my body was putting me through. I hadalmost constant tingling, stinging, some itching, sharp pains, feelings like pin pricksrunning throught the labia minora and the outer folds. It felt like there were marbles inthe opening of my vagina, the skin around the vaginal opening would get red and sore,almost a raw and burnt feeling at times and sometime the skin would crack like a littlepaper cuts and they would be so sore and I would feel swollen. At times it would feel like"air bubbles" were moving through the skin. I really thought I was going crazy,I had never heard of such a thing. When I had intercourse everything would be worse for 2or 3 days or more. I became so depressed at times and was having anxiety attacks everydaywhen I awoke (if I was lucky enough to get some sleep) that it became almost impossible toface each day.I still don't know where I found the strength to keep going and I don't knowif I have the strength to see this to a "cure". I feel like a different personsince this all started. I would give anything to be the old me. I haven't had a normal dayin 6 years and I know I don't want to grow old feeling like this. I have had some prettyscary thoughts but some days I am just so worn out physically and emotionally that I justwant it to all stop. It's hard to appear normal to everyone around me (it is too personaland embarassing to tell to many people). I even have a hard time talking to my husband (Ijust break down) I have cried many a tear alone. I do have one friend who knows what Ihave been going through but I don't like to burden her with my problems so most of thetime I keep it all inside, and it is not easy. I have recently joined the VP foundationsin hopes something in their literature will be of some help to me. The doctor I startedseeing in 97 has helped some. At least he acts as if I have a real problem and doesn'tmake me feel like it is all in my head. He said he didn't think I had vulvodynia. He did abiopsy which showed a thickening of the skin cells (it is hard to imagine that this wouldcause so many sensations). I tried a steroid cream which did help to reduce the sensations(my air bubbles went away). They weren't so constant or intense. I also tried anantidepressant which didn't seem to help much except I slept great but I was tired tillabout noon each day. I am now trying Estrace cream which is helping a little. I have onlybeen using it for a few weeks so I have to give it some time. I read it is supposed tostrengthen te skin and make it less prone to inflamation. I hope it works. This allstarted so suddenly. One day I felt great. I had just lost some weight and all was well. Ihad intercourse with my husband and the next morning I woke and everything in my genitalarea felt like it had changed. All the sensations I mentioned above were happening. Hasanyone else had there probems start this quickly? Everything looked normal but it suredidn't feel normal. It has all been very frustrating because the doctors really don't knowhow to fix it. I know I have been going on and on but it is great to get it off my chest.Thanks for the chance. I have a question for Dr. Glazer if you read this. Could you tellme about the prudendal nerve. I read something about it that said a problem with the nervecan cause tingling, itching and burning all ao which I have had. What could cause thenerve damage? How can you tell if there is a problem with the nerve? Can it be fixed? Wellthat is it for now. Thanks again for the web site and a chance to vent and letting me knowI'm not alone in all this.
CommentHi everyone! I am happy to report that my surgery went well on the 28th, and my doctor(Stanley Marinoff) seemed pleased. I am just taking it easy now, I will be in bed untilnext week when I go back down to college. I was wondering if there are people in theMiami/Ft.Lauderdale area who would like to form a support group. I go the U of Miami, andI know that it would be great to be able to talk to people when I go back down. I want tosay thank you to everyone who wrote to me before and gave me wonderful advice andsupport!! I am 20 years old and I have been suffering for about a year and a half. My painis strictly with intercourse, and then I feel this horrible buring pain, like I am beingripped open. But I think you all know what I am talking about. My pain then would lastabout 2 weeks. It was a horrible cycle, and I sort of felt like - I am young, I have mywhole life ahead of me, and I don't want to be like this forever. I tried theAmitriptaline, a numming topical cream that I can't remember the name of, and then theInterferon shots. Unfortunatly none of them worked for me. So I went ahead and had thesurgery. Hopefully this will be the cure I have been looking for, but right now all I cando it sit back and try and heal. I think this sight is wonderful, everyone is reallyhelpful. Well, thats it - I wish everyone the best!!!
CommentI have vulvodynia, pudendal neuralgia, interstitial cystitis and endometrisos. I havehad 2 Csections, a laproscopic tubal ligation during which my endo was diagnosed andadhesions were taken care of, a hysterectomy, and a cystoscopy to diagnose my bladder. Mybest relief has come with antidepressants to deal with my vulvar burning, itching, andrawness. I am currently using Elavil(starting 6 weeks ago) and am gradually increasing mydose up to 125 mg per day and have been takin Elmiron since my IC was diagnosed in July1998. I also soak in the tub twice a day for at least twenty minutes, blow dry myself toavoid the discomfort that even patting myself with a towel can cause, and am usingvaseline as a barrier to allow my skin to heal and protect against further irritation. Idon't eat chocolate, nuts, coffee, tea, soda, anything with caffiene in it, artificialsweeteners, most spices, onions, citrus, dairy, and fruits and vegatables that are high inoxylates. Even with all of this, I am not symptom free with respect to either thevulvodynia or the IC. I'm hoping that I will continue to improve on the Elavil. I can notengage in sexual intercourse with my husband and get very uncomfortable when I sit formore than 30 to 45 minutes or so. My symptoms also increase over the course of the day andare most noticable in the early evening. I can tell you what has not resulted inimprovement: long term treatment for chronic yeast infection with mycolog II, terazol, anddiflucan, treatment of bacterial vaginosis with cleocin, treatment of the tightness andirritation with estrace cream and then a topical cortisone cream. The antidepressants seemto offer the best relief ( I was on Paxil last spring and was feeling better but wasreluctant to stay on it long term and am now on the Elavil). Let's hope I continue toimprove as I do not want to have yet another surgery.
Commenti am 29 and have had this on and off for about 5 years. Can anyone tell me of anysuccess stories? Also, I would like to know how much calcium citrate i should take. Doesanyone know of any good doctors or support groups in the SF area? I feel like killingmyself.
CommentHi again my dear friends, I have a new E-mail address. It is StayNprayr@aol.com I hopeeveryone had a happy new year. We can hope that this new year will be a year of improvmentfor all Vulvodynia sufferers and a year in which more research will lead us to a cure. Wemust keep the faith and not give up. Above all we must stay in prayer, for prayer changesthings! Please feel free to E-mail me whenever you want to. It's always nice to hear "Yougot mail" and to open it up to see a message from someone just like me! God Bless you all! Shari
CommentI am a married 22 year old, who has suffered from vulval pain for 3.5 years. My husbandand I only had 6 months of unpainful sex before I was forced to see a doctor. I am gettingpretty tired of seeing all these doctors, without improvement. Am I going to be like thisfor the rest of my life? If so, I am going to start researching about vaginaltransplants!!!! I would like a new one - as would my husband:) p.s. dispite all of this, Iam still very optimistic. I hope that all the other women here can stay that way too.(Read the peace story presented by another woman)
CommentI was curious to know if there are any Australians out there with these problems? I'mfrom Brisbane, and it would be comforting to write to people in the same country as I am.I am finding it very comforting to write to others in a similar situation: "22 years old, married for 4 months, frustrated, upset, angry, annoyed, sad,generally pretty emotional about the topic" I only experience pain during intercourse and if I wear tight jeans (for which I amgrateful). My pain over the past 3.5 years has been up and down, but mostly down. I havehad a Fentons procedure which had some success, but I think I still have a long way to go(the bottom of the vestibule is cut and repaired in horizontal stiches). I have triedpelvic floor exercises, EFUDIX cream, numbing cream, antidepressents and more that I can'tremember. I feel at a loss at the moment. Any suggestions for treatments I could discusswith my doctor at next week's appointment would be greatly appreciated. Thank you to allwho have written. Your support is invaluable.
CommentThis is my first post and I feel so relieved just having found the website and someinformation. I have been through the yeast infection test/treatment/no relief syndrome,Premarin topically and internally/no relief syndrome, Astroglide (ouch!), etc., andthought perhaps I was the only woman on the planet who had suddenly and mysteriously“grown together”, or so it feels. Intercourse is absolutely impossible for me atthis point, and I’m wondering if anyone has experience with using a topical numbingagent in order to have intercourse. I’m seeing my OBGYN on Thursday, and would liketo have some kind of plan. I’m in the San Diego area, so if others out there haverecommendations or suggestions, I’d like very much to hear from you.
CommentTo the person who wrote to me (caroline.smith@nationsbank.com), I would love to sharemy surgical experience with you but for some reason my local server will not let me sendyou any e-mail at your e-mail address. Any other way we can communicate????
CommentHi, I am 24 years old, and have been suffering some of the symptoms that have beenlisted by those who posted: they include-- vulvar pain (especially and mostly on rightside), swelling, (no redness), pain when touching pubic hair even lightly, whitishdischarge, and lots of pain when sitting, driving, or wearing jeans. I have tried icepacks, heat, and vitamin E. I am undiagnosed, but I feel these symptoms correlate to theones I have seen described. Oh yeah, and I also have pain that is terrible (on the rightside, again) when I have an orgasm. I am in desperate need of support, and would very muchappreciate any responses or e-mails in regard to this puzzling problem. Does anyone knowwhat my problem could be?? Please e-mail me at: Tiffsdoubl@aol.com Thank you very much,and good luck! ~Shannon
CommentI have suffered for 5 1/2 years with vulvar vestibulitis. After countless specialists,painful treatments, creams, medications, etc., I was finally referred to a surgeon ofgynecologic oncology. I am going in tomorrow, January 13, for a total vestibulectomy, withvaginal flaps and reconstructive surgery(this is not laser!). The success with the thissurgeon and the procedure are very high. I will keep a diary of this beginning tomorrow.The recovery period quite length, but it will all be worth it, to be pain free and normalagain. Has anyone had this operation? Or, if you would like to know the outcome, please e-mailme at click64@hotmail.com. My prayers are with every woman who suffers from this awful condition. S
CommentHi, is the first time I get into this site and I discovered that exist sites aboutvulvodynia only a couple of days ago. I live in Italy and I did not find any sites thattold about doctors in Italy so i was wondering if anybody of you heard of one or even ifthere is any italian woman who have the same problems. I have the so-called vulvarvestibulitys syndrome (hope the spelling is right and sorry if my english is not perfect)from the 1996. It seems that my VVS was caused by a candidiasis that affected me for ayear, even if is weird no one doctor or gyn could help me to solve the candidiasys until 2years ago when I went to a dermatologyst instead of a gyn and he helped me. He solved theyeast infection but he could not solve the VVS, I still go to him because was the only onewho, at least knew about the VVS, and I tried a cortisone cream (no results) and twoantidepressants (results in the first weeks and then pain again). I used a wonderfulA-vitamin-gel-cream that refreshed the affected area and took away any pain I could haveafter intercourse but the company which produced it stopped the production (nice, eh?).The only symptoms I have are the ones listed by Jody :painful sex and pain after I try tohave sex and some burning while urinating.If I avoid (!) sex I can live as a woman with nosuch problems and reading the others messages I consider myself lucky because I can walkand sit and wear jeans! I've red about the low oxalate diet: did anyone had improvementwith this? Any other tips? I really wish you future days of pain freedom, peace Chiara
CommentSIX YEARS AGO I HAD LASER SURGERY TWICE TO GET RID OF MY VULVODYNIA, WHICH WASEXTREMELY PAINFUL. I LEARNED TO JUST DEAL WITH IT,USING ALOE VERA GEL AND EVENING PRIMROSETO LESSEN IT. SOMETIMES ITS NOT AS BAD AS OTHER TIMES, BUT I STILL HAVE THE BURNING. IUSED TO HAVE MULTIPLE ORGASMS, BUT EVER SINCE I CAME DOWN WITH THIS, I ONLY HAVE ONE,WHICH I'M THANKFUL FOR. BUT, I JUST DON'T UNDERSTAND WHY OUT OF THE BLUE I COME DOWN WITHTHIS. IS THERE ANY WHERE IN OKLAHOMA CITY TO GO FOR YOUR TREATMENT. THANK YOU
CommentDear Friend, I've searched for all of you for the last 10 YEARS!! My problem started at 32 years old. I had what I and my doctor thought was a yeastinfection. I used femstat for two weeks. No relief. I had serious burning pain, red,swollen and a feeling of pressure in my lower abdomen. Urinating was excrutiating and sexwas out of the question. He prescribed femstat cream for me for the following TWO years.Everyday. The pain was tolerable while I used the cream. I proceeded to see 14 doctors inthe last 10 years and all have said although quite red there seems to be no problem. I wastold to just not think about it and it might go away. I have cried, I had shut myself offfrom all friends and family for a while and even had a few drunken spells . I knew thatthis was not in my head and obviously time was not the answer. There was one doctor who atleast believed me and said he had heard my exact symptoms from many women but was honestenough to say he did not know what to do about it. He did give me strange advice thatalleviates some of the pain TEMPORARILY. It's called Instant Ocean and you can get it in apet shop or fish shop. It's actually for fish tanks. It's a high salt solution that hasalot of characteristics of the dead sea. He said to put a cup in a small amount of warmwater in the tub and sit in it for half an hour. I was needless to say very apprehensive.But it gives me relief during the day. I can at least travel now and function at work. Butas day wears on the pain does return. Seems worse before my period. Last year considered amarriage proposal from a wonderful man. I spoke to all my doctors and asked about myproblem. They said get married I'm sure all will be well once you're settled. I knew in myheart the severity of my problem but for once in my life used my heart instead of my head.My husband knew the problem before marriage and I was extremely clear about the severityand the years in which I have had this problem. So we married. But in almost two yearstime we've had sex six times and I'm not happy. I'm extemely attracted to him , love himand cannot continue this way. I also desperately want a child and evey doctor says thereis no problem. Well if you can't have sex you can't make a baby. I will be 42 years oldand afraid that my chances might have passed me by. I live in Queens, New York and willgladly talk to someone else. If anyone knows , please send me names of who is working withthis problem either in Long Island or in New York. I owe it to my husband and to myself. Iwill be eternally grateful for any help some one may offer me. Your comrade-in-arms, MiMi
CommentDear Friend, I've searched for all of you for the last 10 YEARS!! My problem started at 32 years old. I had what I and my doctor thought was a yeastinfection. I used femstat for two weeks. No relief. I had serious burning pain, red,swollen and a feeling of pressure in my lower abdomen. Urinating was excrutiating and sexwas out of the question. He prescribed femstat cream for me for the following TWO years.Everyday. The pain was tolerable while I used the cream. I proceeded to see 14 doctors inthe last 10 years and all have said although quite red there seems to be no problem. I wastold to just not think about it and it might go away. I have cried, I had shut myself offfrom all friends and family for a while and even had a few drunken spells . I knew thatthis was not in my head and obviously time was not the answer. There was one doctor who atleast believed me and said he had heard my exact symptoms from many women but was honestenough to say he did not know what to do about it. He did give me strange advice thatalleviates some of the pain TEMPORARILY. It's called Instant Ocean and you can get it in apet shop or fish shop. It's actually for fish tanks. It's a high salt solution that hasalot of characteristics of the dead sea. He said to put a cup in a small amount of warmwater in the tub and sit in it for half an hour. I was needless to say very apprehensive.But it gives me relief during the day. I can at least travel now and function at work. Butas day wears on the pain does return. Seems worse before my period. Last year considered amarriage proposal from a wonderful man. I spoke to all my doctors and asked about myproblem. They said get married I'm sure all will be well once you're settled. I knew in myheart the severity of my problem but for once in my life used my heart instead of my head.My husband knew the problem before marriage and I was extremely clear about the severityand the years in which I have had this problem. So we married. But in almost two yearstime we've had sex six times and I'm not happy. I'm extemely attracted to him , love himand cannot continue this way. I also desperately want a child and evey doctor says thereis no problem. Well if you can't have sex you can't make a baby. I will be 42 years oldand afraid that my chances might have passed me by. I live in Queens, New York and willgladly talk to someone else. If anyone knows , please send me names of who is working withthis problem either in Long Island or in New York. I owe it to my husband and to myself. Iwill be eternally grateful for any help some one may offer me. Your comrade-in-arms, MiMi
CommentI found this site as I was trying to help my good friend who has been diagnosed withvulvadynia. She is suffering terribly. DOES ANYONE KNOW OF A DOCTOR IN THE KANSAS CITYAREA WHO IS KNOWLEDGEABLE ABOUT THIS CONDITION???? If anyone can help please e-mail me soI can pass this information on to her. Thanks!!
CommentIs there anyone who suffers from vestibulitis due to an injury to the pudendal nerve? Ibelieve that is what I have pudendal neuralgia. Has anyone received treatment for this?Has anyone tried neurotonin for this?
CommentJust wanted to post a message when I am feeling good,for a change. Usually I post whenNOT feelin go well. So though I would let everyone know there can be days when you arepain-free. I have been feeling quite a bit better for about 2 weeks now.No thanks to thehelp of any doctors. As I have given up hoping to find one to help me. I decided to trythr Prayer method of treatment, as well as a sort of trial and error way of determiningwhat does or does not help me.So I will give a lot of the credit for my feeling better toGod.When I was totally at my wits end I turned the problem over to God and asked forhelp.I have found too, that drinking lots of water and limiting my intake of soft drinksseems to help. NO baths now- only showers,and only Ivory soap.I try to only use NorthernFree toilet tissue,but I find it hard to locate in grocery stores. So when i cannot finit- I DO make sure to buy at least a name brand,fragrance free type.I wash my clothes(allof them now) in Ivory of Dreft Baby detergent and still rinse twice.Have not yet tried towear any denim again at this time. Am slowly adding pants back into my wearables.Duringthe worst times I had with the burning and pain- I restricted what I wore at all times tolong dresses or skirts with NO underwear AT all. As I stated, it is all trial and errorfor each individual. Am happy to report that Hubby and I were actually able to havepain-free intercourse(after a 3 month wait).So far, no signs of the burning pain I hadbeen experiencing either during or immediately afterwards. Keepimg my fingers crossedthough.Feel as though we will never get back to a truly normal routine of that aspect ofour lives. Had to wait a good long while before trying it again. we made sure I had beenpain free for at least 2 weeks before attempting it.we did Not use the Astro-glide thistime since the last attempt with using it seemed to cause an immediate sensation ofburning.May not do that to others though.Well, that's all. I had whined on here so much inthe past that i thought for once I would offer some encouragement to others.I know I willhave bad days as well as good ones. I don't feel that I am cured by any means. I am hopingthat I am at least,for now, getting things under control.Will report back again as to howthings are going.Still hope to one day find a doctor like Dr. Glazer, in my area,butrefuse to go to anyone else that is so unfamiliar with this problem that I have to S P E LL Vulvadynia for them!!!Wishing everyone suffering from this awful disorder the very bestof luck . Guess all we sufferers can hope for are a few painless days.I really appreciatethose days now!!
CommentI had itching and burning in the vulva area for three months and I thought I was goingcrazy because I couldn't figure out what was causing it. I narrowed my problem down to thecalcium supplement I was taking, it had too much oxalate in it. I stopped taking it andthe itching and burning(urine) went away in three weeks. I wonder if other women with thisproblem tried changing their calcium supplement their problem would go away as mine did.
CommentI am 30 yrs. old. Have been suffering from vulvodynia since August. Elavil worked forme, but the inflammation didn't go away. I have been unable to have sex with my husbandsince late July. My doctor did "vascular laser of the vulva" on 12/28. He treatsothers with this condition and has had much success. I would like to hear from anyone whohad this same procedure done and it was SUCCESSFUL. Dr. says it may take months before weknow if mine was a success. He said I was a good candidate because my inflammation was sowidespread. PLEASE DO NOT WRITE if yours is a bad story. I need reassurance and hope --especially since my recovery has been so difficult. Praying for us all-- Jennifer
Commenti've just found the site - it's comforting (?) to know there are so many other peopleexperiencing what i am! i feel somewhat freakish and less than a whole person; i've beenmarried for a year and am unable to have sex with my husband. he is patient andunderstanding but is getting very frustrated! we have not experienced pain free sex foralmost two years; i had less than 6 months of pain free sex before this developed... they thought i had thrush and put me on course after course of treatments. i changed mydiet but nothing worked. thrush never showed up in my swabs. i have had three biopses andthe doctor wants me to have another. i have not been back since he said that. i have had problems also with lichen simplex chronicus and with lesions on my labia. ithink it maybe due to latex or lubricant; i'm not quite sure. i have been takingPolaramine (anti-histamine) which has helped a great deal with the itching and has madethe lesions disappear. however, the pain continues. I'm using advantin, a steroid, which ihope will help. some days are better than others but i am losing hope. i never feel sexually arousedand my husband thinks it's his fault!! if there are any other young women in this situation in Australia, please contact me. iwill try a few of the things i've read here today but if anyone anywhere has helpfuladvice i'd love to hear it.
CommentI was diagnosed with vulva dynia about 2 months ago. I complained to my doctor severaltimes about my symptoms. She kept telling me to use a lubricant or to have more foreplay,and I kept telling her that that wasn't the problem. Finally after about 5 visits she sentme to a gyn. He diagnosed me in about 5 minutes. From the reading I've been doing, I thinkI got pretty lucky. I only started experiencing pain during sex, I knew something waswrong because I used to be able to have sex several times a day if I wanted to. Suddenly,I had this intense pain during sex, and it would last for several hours after intercourse.I am only 21 years old and don't want to live with this condition for the rest of my life.My gyn put me on a cream called viaderm, which is part hydorcortisone and partantoboitics. This cream seemed to work at first, but not any more. I am going to see mygyn tommorow. I have a lot of questions.
CommentThis is to Jody(no e-mail). I have experienced the similiar pain during intercourse. Ialso started getting chronic bladder infections. Please e-mail me. I would love to talk.Anyone else who has experienced the same pain. I would love to talk
CommentLike all of you I have been through all of it. Doctors who have no clue, misdiagnosisetc. I have had this problem for almost 2 years. I have been taking Elavil since Augustand went to PT for 2 months (all my insurance would cover). I'm not sure if I will ever betotally NORMAL, but I am definitely doing much better. My specialist Dr Elizabeth Stewartis located in MASSACHUSETTS. Her number is 617 541-6646. If you live in the area CALL HER,she knows what she is doing and can refer you to some execellent physical therapists.Don't let another quack treat you like a guinea pig. GOOD LUCK!
CommentHello everyone. Saw Gayle's note above and realized I hadn't posted in awhile myself.Still no sex but the 24/7 pain has subsided. I have horrible flare-ups during my menstrualcycle and even volunteered for a study being done at Johns Hopkins regarding vulvodyniapain and your menstrual cycle, but I haven't heard what the results ending up being. I have had sex 3 times in the last 2 years and must admit I have one of the mostunderstanding husbands. However, I feel like if it wasn't for this website that we wouldhave been divorced a long time ago. He knows he's not the only one "doingwithout" and understands my pain also. Just wanted to let you all know that most of my "good days" have been due tothe fact that for one solid year I did absolutely nothing. No exams, no drugs, no creams,no special soaps, etc., no sex -- nothing. It was at the end of this year that my husbandand I attempted to have sex. It didn't hurt during, however, the pain afterwards lastedfor weeks. Something else that I found helps is a good psychologist. I was nearly suicidal lastyear (had just been diagnosed with fibromyalgia along with the vulvodynia and interstitialcystitis) and my primary care physician referred me a doctor in her office. He hasexperience in sexual problems/painful intercourse, etc. However, he had never heard ofvulvodynia before I came along. It's been a great experience on both of our parts and Ireally feel like he has saved my life. I have met with him on numerous occasions, but myhusband and I together have never had the chance to see him. That is my goal -- I think itwould really help him also. I would just like to end this by suggesting besides the only meaningful treatment otherthan prayer is to stop all of their so-called "treatments" for awhile. I thinkyou'll be surprised at the results. I found that the creams/ointments etc. just made thepain worse and being drugged all day from the tri-cyclics was no way to live. Besideswhich it didn't even help the pain. I'm on anti-inflammatories for the fibromyalgia and Ihaven't noticed a difference in the vulvodynia pain. Even the Astro-Glide burns! Everytime I had an exam I would hurt for weeks. I've been dealing with this for years and mybest days have been the ones where I wasn't doing anything for the pain. Keep the faith sisters! I know one day a female gynecologist will be diagnosed withthis "syndrome" and then we'll get our cure! Until then we're stuck with allthese male doctors who could care less.
CommentI am feeling better than I have in two years and just wanted to share what is workingfor me. I have had VVS for 4 years and have tried everything, including a vestibulectomy.Currently I am taking Nuerontin and Elavil and doing stretching exercises, probablysimiliar to bio-feedback. I still have bad days, but overall am 80% better. My Dr. saidthat in 3 months, he will start cutting back on the medicine. If anyone wants morespecifics on the treatment, just write. Also, I am in AL so if someone wants the name andnumber of my Dr. let me know.
CommentMarcia, I agree with your last statement regarding the male doctors. If men wereexperiencing the same problems that come with this "syndrome" there probablywould have BEEN a CURE by now! Until the cure is found we just have to Stay in Prayer!!!!!
CommentAfter reviewing the previous guestbooks I haven't seen anyone cured from thismysterious illness. Has anyone been cured regardless of what state or country you may befrom. I've been suffering for over 7months now. My vulvadynia was caused by overuse ofanti-fungals. I thought by now that I would be feeling alot better. They diagnosed it ascontact dermatitis. But it has been 7 months, with very slow improvement. Please e-mail meor post it on the site if ANYONE has had a complete recovery. I will travel ANYWHERE!!!!Keep up the prayers & faith maybe someday there will be a simple cure. L.C
Commentby far the most comprehensive info I've found on the issue. Many thanks. MA
CommentFirst of all I would like to congratulate Dr Glazer on providing such a great site,where we can all express our frustration and tell each other our own story. Finding thissite has truly saved me from ending up in the ‘nut house’. Thank you, thank you,thank you. I have a detailed list of treatments I have tried in the last 5 years if it isof any help to your research. I’m a 23 years old Australian and have been suffering from this extremely painful‘problem’ for the last 5 years. I experience severe burning and sometimes abruised feeling on the outside and about 1” inside in the areas of 4 o’clock and8 o’clock (Bartholin Glands) of my vulvar. Sex is nearly impossible as it is sopainful and the muscles seem to be so tight around my Bartholin Glands that it is hard formy husband to enter me. We tend to stick to foreplay most of the time, but it’s notthe same, we both miss that closeness you feel when two people become ‘one’.It’s a natural thing when you love someone so much, you want to be as close asphysically and emotionally possible. It really hurts to know that we can’t experiencethat feeling……yet. My problem started more or less overnight. It became really painful to urinate whichalso made my vulvar burn. I bet you can all guess what the doctors said – thrush! Ihave had so many treatments for a yeast infection and not one of them has given me anyrelief. This is one of many different treatments I have tried; one gyno/proffessor thoughtI maybe allergic to my own hormones. He did a test by injecting small amounts of hormonesjust under the skin on my under arm. A few flared up and he suggested having a needle– Depro Provera which would stop these hormones from producing. I had the needle inMay 98 which lasted 3 months and didn’t notice any changes. In summary I have been tonumerous Gyno’s, Urologist, Naturopaths, Homoeopaths, Chiropractor, Skin Specialist,Acupuncture, Chinese Herbs, and numerous diets. Until 6 months ago, I didn’t have aname for my problem. For 4 ½ years I thought I was a freak of nature – knowing thatthere are other women out there experiencing my pain and helplessness makes me feelstronger. I was beginning to think I would have to travel to America to find a doctor who hasexperience with Vulvodynia until finally I found a Doctor in Australia through searchingon the Internet. He works with Dr Glazer doing the Biofeedback, but asked me to beprofessionally diagnosed by a Dr Richard Reid before I started the program. Dr Reiddiagnosed me with having Severe Vulvodynia. He has told me to try the biofeedback, but hethinks because I have Severe Vulvodynia that I will have to have my Bartholin Glandsremoved. After reading and talking to a woman who has had this surgery, my husband and Ihave decided against it. I have been doing the biofeedback exercises for nearly 5 weeks.To date there has been no change, but they say it usually takes about 8 weeks before anychanges occur. I will keep my fingers, toes, legs and arms crossed!! Well this has ended up been quite long. Although if I wrote down the details of everytreatment I have tried it would end up been a book! If there is a woman in Australia whohas found a cure or some type of treatment which gives a little relief please email me asa lot of the treatments that are suggested in the guestbook aren’t available inAustralia. If anyone would like to contact me, please do I would love to hear from you. Lets all hope that 1999 is going to be the year we can all start living normal livesagain.
CommentTo: anyone HELP! I've been suffering for 9 years with this unknown chronic disease.Tried all the antihistamine & antidepressant drugs. They help for a short term. Theonly free time is at night, I find I must lay down to get relief. Very depressed. It hastouched every part of my life ie: my chldren, husband, work sleeping, etc. I'm in Texas.Does anyone have name of a specialist in or around Austin? Look forward to your response.
CommentI am talking on physiotherapy treatment for vulval pain. If anyone can tell me aboutyour experiences with healthcare professionals - that would be very useful. The group I amtalking to is multidisciplinary so I hope to have an effect. I am speaking in England, andwould really appreciate anyones experiences in the UK
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CommentI am from England, and I have been suffering from vestibulities for almost two years, Iwould be grateful if I could hear some success stories as I am only 20 and would love tohave sex with my boyfriend again in my lifetime. I would love to hear from anyone who cangive me some encouragement as at the moment I feel like I have tried everything, fromcreams and tablets and nothing gives me any relief. Feel free to write.
CommentI had some success with Premarin cream in reducing my symptoms. However, I think Icould get even better. I have severe pain during intercourse, and though my husband isvery patient, I wish I could enjoy intercourse without all the pain. I would be veryinterested in a referral to a doctor in the Twin Cities area who specializes in thetreatment of vulvar vestibulitis.
CommentDr. Glazer, Great Web Site! I started with this late summer of 1997. Finally got to aDr. that specialized in vulvar pain. He suggested PT , but my insurance (HMO) wouldn't letme go to his referral. But am going to pay out of pocket for it, because she is the onlyPT in this area that specializes in this kind of PT per my Dr. with bio-feedback. When myvulvar pain gets worse I also have urine retention. I'm not sure if having multiplesclerosis has contributed to my condition or not, but I continue to do lower backstrengthening exercises and walk a mile at least 2 X Q wk. As you may have guessed mysymptoms started with repeated UTI's and the cycle of antibiotics and yeast meds. I wouldlike to know the percentage of people biofeedback has helped and what percentage surgeryhas helped... realizing every patient and doctor are quite different. Your"feedback" might help me. Thank you. Jojo
CommentI have been suffering for the past 6.5 years with Vulvar Vestibulitis Syndrome I havebeen to a least 4 different gyn. I have had laser surgery to the muscle around the open ofthe vulvar which cost a pretty penny but with still no luck. I have tried nizerol and manyother tablets and creams. I have suffered from thrush since I was little. About a year agoI was refered by my lastest gyn to a doctor who specilised in this area of womensproblems. She was very good and we tried a few things finally I went on calcuim citratewhich has to be order from America (I live in Australia) this has help quite a bit , ithas not cured me but life is a lot better. It is nice to find that I'm not the only onewith this problem. Lokking forwarrding to hearing from anyone.
CommentI have been suffering from this disease for 5 years, I have done a lot of research, butnothing works. I am free of the burning sometimes for 2 weeks but then it comes backagain. I also have sore spots, which I treat with vaseline. I take an anti-depressant-Serzone, and a tranquillizer - Lorazapam. I pray everyday for a cure. Marina
CommentHi! This is my first visit to this site and I am thrilled to find a connection toothers with this awful problem. I developed severe symptoms 4 years ago that forced me toquit my job and change my lifestyle. After diagnosis, and two biopsies, 7 doctors, andmany tears of frustration, I got the low oxylate diet from The Vulvary Pain Foundation,and after nearly 3 and 1/2 years on the diet, I am finally finding relief. I just want tosay to anyone who is treating this problem with the low oxylate diet, stay with it, itdoes work. I tried several other test programs and had either allergic reactions or noreaction, so just stuck with the diet. My pain level is much lower, I can walk for over anhour, now, still can't sit at all. If there's anyone out there that had an earlyhysterectomy and no estrogen replacement therapy and has vulvodynia, I would love to hearfrom you. Actually, I would love to hear from anyone who is suffering with this problem.Deb
CommentHi to everyone out there. This site is so helpful to read when you are having a badday. It helps to know there are others out there who are having the same problems as I am.I have been diagnosed with Vulvodynia for 3 years now. I have been to countless differentdoctors to no avail. I am still miserable everyday. I have tried so many different creamsand medications I can't remember them all. Has anyone out had any luck getting rid ofchronic yeast infections? I feel that if I got this under control, it would go a long waytowards relieving some of my symptoms (burning, itching, pain). I would also love to finda support group in the Dallas/Fort Worth area. If anyone else is interested, please e-mailme. Be strong.
CommentI am a 27 year old who has suffered from Vulvodynia for a year and a half. Aftercountless doctors I finally found a specialist in gynecology and infectious disease. Ihave been diagnosed with Lichen Schlerosus and Vulvar Vestibulitis. I had chronic everyday burning and pain with intercouse. Once the chronic burning was controlled, I was stillhurting with intercourse, so I opted to have a vulvar vestibulectomy last February 1998.The area where the vestibular glands were no longer brings me pain with intercourse, butnow its deeper inside. On my last visit a few weeks ago to my specialist she told me I hadweak pelvic muscles. They spasm during penetration and this is what is causing my pain.Next week I am being sent to someone who is going to try biofeedback with me. I waswondering if anyone else has had success with this and what exactly is involved. Pleasecontact me! Thanks!
CommentI would like to say hello to everyone . I recently found this site and it is nice toknow I am not alone. I too have had painful symptons. It's actually started a few yearsago with bladder infection, chronic yeast infections and painful intercourse. I neverthought twice about these things because they would come and go and I could live with it ,However in the past 6 months I have been in severe pain almost every day. Some days it'sjust annoying other days it's horrible. I have several symptons that I have read here, I have the itching and burning in thevaginal area . The burning is constant and it feels sort of like a painful tingling orlike an electrical charge feeling. I also have a problem around the tailbone. My lowerback gives me alot of pain and every now and then I get sorenes in the rectal area nearthe end of the tailbone. Somtines this soreness becomes so sensitve I can not touch thearea and it makes sitting so unpleasant. Another sypmton I have which I thought wastotally unrelated is a pain in the leg. I read that someother people experience this aswell. I've been to many many doctors and they all think I'm nuts. I would tell them all mysypmtons then I would say that they are all on the left side of the body . None of thesepeople have helped me. Several doctors have said that I have several diffferent this and they are not related. I believe otherwise. I finally did get alittle help believe it or not I went to plannedParenthood. ( I figure they must see everything , as far as std's or vaginal problems. )So one of the doctors there said it sounds like vulvadynia, She didn't know much about itbut she sent me in the right direction. As far as the rectal problem I've noticed thatBalmex seemed to help alittle . I have deceided not to give up though and I will find something out there to help usall. We should not have to live with this pain. If there is some help someone will find itand hopefully they can share it with all of us. If there is anyone that would like to email me feel free. And I wish the best toeveryone !!!!!!!
Commenti have been suffering from itching, burning and pain since September. I am 47 and atfirst my doctor thought that I was just suffering from vaginal dryness. I have been onPremphase for 3 months and I feel better in all other aspects, but the vulva problem didnot go away. I am having a biospy next week and I hope that something will finally beresolved with this procedure. Does anything really work for these problems? It sounds likefrom reading the guset books that no one ever gets better. I feel that this has turned mywhole life upside down. I have a wonderful husband and I feel that I am wrecking his lifetoo. I don't know what happened to me, one day I was fine and the next I was like this. Isthere any hope for us?
CommentIf anyone in San Diego would like to communicate, please e-mail me. I've found reliefwith Estrace cream, hot baths with tea bags, and Vitamin E oil applied to the Vulva.Sitting for long periods of time aggravates Vistibulitis. Often I feel like I have tourinate, but I really dont, and it's not a UTI infection, because I've had my urinechecked. I'm tired of feeling like a freak too, and wonder what I did to deserve thissuffering. I have to keep telling myself that there is hope for a cure for this disease. Sue
CommentI am so glad I found this page. I have been having this burning sensation for a whilenow, and I have been having vaginal dryness. I seem to only have the burning sensationafter intercourse, then it does go away. It lasts sometimes hours or days at a time. Itonly occurs after sex however, I don't have a constant pain, but I think that this mayjust be what my problem is. I have just been to my doctor for my usual check up, I am onthe Pill so I have to go every six months, he did a PAP and it came back normal. He didnot notice anything wrong. Like i said i have vaginal dryness, and now this pain aftersex. Could this be a resault of being on the Pill? Is there anyone else who is on the Pilland has these symptoms? I have been readig about the different things to try, but do theyreally work? Does anyone have any advice for me, what works to stop the pain? Or am I onlyhaving this pain becuase of the vaginal dryness? If you can help and want to email me,please do. Thank you and good luck to us all.
CommentI was diagnosed with vulvodynia a year ago. It has been the longest year of my life. Ihave been to many doctors. I tried to take Elavil but the side effects were worse than theburning. The gyn doctor referred me to Dr. Glazer who I went to see for the first time inDecember. He explained to me the proper way to use the biofeedback machine and a protocolto follow. Prior to seeing Dr. Glazer, I went to a local physical therapist and had experimentedwith biofeedback. When I first saw Dr. Glazer, he immediately advised me that I had notbeen using the equipment correctly and not following a program that would lead toimprovement. I took Dr. Glazer's advice and instructions and I went back to see him a month later.Based on his testing, I had improved in both vaginal muscle strength and relaxationcapacity. I have had less burning since beginning biofeedback and using it correctly. I seem tohave more good days and the burning is less intense. I feel that I am on my road torecovery. I have tried many of the creams and other treatments, including medications andhave not had the success that I am experiencing with this approach. I did not realize that we had a place to enter our comments and I am glad that Dr.Glazer has given us this opportunity. I will write back after my next visit in three weeksand let you know if the burning continues to improve. I wish that I had started this method of treatment a long time ago.
CommentDr. Glazer, I'd like to thank you so much for having this web site. I am 32. I've hadvaginal pain and burning for the past year and a half. Since I didn't have any vaginalwarts or anything visible, the doctors dismissed this problem for months. I went from onegynecologist to another. Finally, I went to a doctor who had heard of these symptomsbefore, and she sent me to a doctor who knew about vulvodynia. The treatment helped me alot. I haven't been able to continue as my doctor would like, however, because my HMOdecided that I'd had enough treatments. I didn't know, until I read on this site, thatvulvodynia tends to accompany such problems as migraines, back pain and irritable bowel.After a car accident, I had all of the above mentioned problems and also a urinary tractinfection for which I was given Cipro. I really didn't have any vaginal burning untilafter my 3rd dose of Cipro. What bothers me most of all are my food allergies which I'vesuddenly developed. I immediately feel vaginal burning if I eat something which for somereason disagrees with my body. Is there any way to get over this? Is my body just notbreaking down food properly? One more question. I was, at the time of the accident,working in an environment that made me ill. I was working around chemicals and metalswhich I found out I was allergic to. I broke out in hives on my second day at work. I'dnever had them before. I was told that hives can damage your nerves. Can this have a partin this whole vulvodynia matter?
CommentI am 25 years old and have been having symptoms of vulvar vestibulitis for one year. Ihave been married since May of '98 and my husband and I have only been able to have sex ahandful of times. This is very distressing, as we used to enjoy an active sex life. Now, Iassociate having sex with pain and he associates having sex with inflicting pain on me. Heis extremely understanding, but this is very frustrating! I also have the sensation thatmy vagina is too "tight" or somehow blocked when he tries to enter me (is this apsychological phenomenon)? I have been diagnosed with "recurring yeastinfections". My doctor is aware of vulvadynia, but says that the pain in the entranceto my vagina is caused by the recurring infections. I am a bit confused about this. Do Ihave vulvadynia? I have taken many antibiotics and yeast infection creams. I am also usingAci-jel twice a week which seems to help. My only symptom is that I have pain duringintercourse (and discomfort upon inserting tampons) and occational burning when I sit forlong periods or wear blue jeans. I am saddened to read of all the women who are sufferingfrom constant pain. I can't help but think that if men suffered from a similar disorder(i.e. one that interfered with their sex life), the entire world would be informed andworking for a cure. Instead, in this situation, women are suffering and many doctorsaren't even aware of the disorder. I am glad to see the various web sites dedicated tocreating awareness of this problem. I welcome any comments or suggestions.
CommentMY ROAD TO RECOVERY If you are reading this, you are, no doubt, facing a desperate situation. For more thana year, I scanned hundreds of websites, hoping to find an answer to my chronic pain. It began in 1997 as a yeast infection. I'd never had one before and tried to treat itwith an over-the-counter medication. Despite my self-treatment, nearly two weeks passedand I was still feeling a burning sensation. I visited a local "quick-care"clinic for diagnosis. After examination, the physician determined my yeast infection wasstill present. He prescribed a week of oral anti-fungals, and the yeast infectiondisappeared. The debilitating burning sensation, however, did not. I was a healthy, active, professional, 27-year old woman. There was no reason tobelieve I was facing a year and a half of chronic pain, depression and hopelessness as theresult of a yeast infection. But that is exactly what happened. Before long, my life was consumed by my pain. No matter what I tried, I could not findrelief. I could not walk, sit or function without thinking about how badly I felt. Theburning sensation was unbearable. I soon turned to a litany of doctors for help. I startedwith my regular gynecologist. He told me the burning was the result of my stubborn yeastinfection. For a three month period, he prescribed weekly anti-fungal pills and steroidcreams. I later found out that this misdiagnosis only made the problem worse. When thepain still would not go away, I began to get desperate. I visited four more doctors,including a dermatologist. Not only could they not find the cause of my pain, they beganasking me if it was psychosomatic. One doctor even had the nerve to ask me if I wasimagining the pain in my vulva to avoid having sex with my husband. The chronic pain, coupled with my sense of hopelessness, began having dramatic effectson my personal life. One of the hardest things I had to face was avoiding sex with myhusband because the pain was so intense. Although he understood my health problems, weboth missed our intimacy tremendously. This translated into a magnified sense of guilt onmy part. I wanted to be close to my husband again. I wanted to share myself with him. Yet,I couldn't because the pain was so unbearable. After months of tears and emotional breakdowns, my husband said he was determined tofind a doctor who could help me, no matter what the cost. Together, we scanned the WorldWide Web, looking for anything that would explain my intense burning and pain. Over andover, we ran into the same ominous word-Vulvodynia. And, let me assure you, thedescription and outlook were even more depressing than the pain I felt. That is, until I stumbled upon one web site which offered help. It referred to aVulvodynia specialist, Dr. Stanley Marinoff. A month later, I was at his Washington, D.C.office undergoing extensive testing, biopsies and blood tests to determine the etiology ofmy pain. Dr. Marinoff determined my problem was indeed a chronic condition calledVulvodynia. The entrance to my vulva had become extremely irritated and inflamed-and myprognosis was unknown. Dr. Marinoff prescribed a low dosage of antidepressants to help block some of my nervepain. In addition, he recommended soaking in the bathtub for 20 minutes a day and rinsingafter trips to the bathroom. Most importantly, Dr. Marinoff referred me to Dr. HowardGlazer, a clinical psychologist specializing in biofeedback therapy. Although I wasunfamiliar with and unsure of biofeedback, I was ready to try anything. For 20 minutes, two times a day, I now practice strengthening and relaxing my pelvicmuscle with the help of a special sensor inserted into my vulva. The exercises are helpingme gain stability and control, and miraculously, the technique is alleviating my pain. I have been practicing biofeedback therapy under Dr. Glazer for nearly six months andam feeling like my old self again. I go for days without experiencing pain and Dr. Glazerassures me that in a few more months, the burning will completely disappear. I am startingto exercise again, have sex regularly and function normally. Most importantly, Dr. Glazergave me my spirit back. I can finally see the light at the end of the tunnel. The love between my husband and me is deeper than ever. I now realize how important thevow "in sickness and in health" really is. Thanks to Dr. Glazer's constantsupport and care, my husband and I are looking forward to a short road to recovery---and along road of happiness together. Dana M. Newport News, Virginia 2-4-99
CommentI feel like a rookie at this compared to some of you. I've only had the pain andburning for about 2 months, but it seems like an eternity. My doctor seems to have givenup and his last recommendation was Aveeno oatmeal baths, which I haven't tried yet. I'm 40years old and never had any major gynecological problems except an occasional yeastinfection. After taking antibiotics for strep throat almost 3 months ago, my symptomsstarted. I was diagnosed with a bacterial infection (Klebsiella-?) and a yeast infection.I was given Metronidazole twice and Keflex once(7 days each time), while using anantifungal cream. Next I was given Diflucan, then Lotrisone, which is an externalantifungal plus cortisone. None of these things helped and some made the symptoms worse.The last culture I had was negative, so I'm desperate at this point. Sex causes great painand burning for 2-3 days afterwards. I am amazed at the number of women out theresuffering from this disorder and it seems that so few doctors have any clue as to how totreat it. I'm going to try calcium citrate and a low oxalate diet, and am even thinkingabout an antidepressant, although I've heard some horror stories about side effects. Ialso have hemmoroids and rectal pain, as some women have mentioned. Is there a connection?I may go to a Naturopath to try some alternative treatments. At this point what do I haveto lose. To all of you out there suffering from this disorder, I pray you find an answer.
CommentTo Paula who wrote on 2/4, I tried to write back to you, but your e-mail address didn'tgo through. Please write to my e-mail address if you need any help or advice. Sue
CommentI am delighted to find this information. I believe that I have been suffering from thissymptom for the past two years. I was fine until I had vaginitis and then I experiencedalmost all of the symptoms associeted with the ailment. The doctors have not been able tohelp me and I'm hoping that as I take this information to the OBGYN he'll be able to referme to someone in CT for help. Thanks for this site and the great information you provide.Until yesterday, I thought I was going insane.
CommentG'day. I have posted my details before, but I had heaps of questions that I wanted toask. I have tried a miriad of therapies and treatments, and have only just figured outthat one of them was biofeedback (I think) It was with an Australian physiotherapist, andshe told me I had very weak pelvic floor muscles. I had to rent this equipment ($70 permonth), which "buzzed" a lot to help me strengthen the muscles. Is that the samething???? I did find that I was having success with the treatment at the time, but thatwas over 2 years ago, when I was demanding results and it just wasn't good enough. Istopped doing it for a number of reasons, but the main one was that I was told not to doany impact sport. I love netball, jogging, cricket etc. All which were impact sports. Ihad to give up all of these things and I was wondering if this is correct? I probablywould try it again if I could continue being an active 22 year old. This "thing"has already turned my life upside down in so many ways. I'm still not ready for that kindof sacrific (I'm wanting to join our army reserve here too, so I couldn't avoid that kindof impact activity there). Does everyone out there trying biofeedback have theserestrictions? Please write if you have any info. I am so desperate for help :(
CommentI am happy to have found this website. I have been suffering from this condition forover 2 years and I am 34 years old. I have been to numerous doctors and none of them seemto know what all this burning and itching and red swollen vulva area is all about. I also was diagnosed with extensive endometriosis and had laproscopic surgery 2 yearsago. Still don't feel any better. I was wondering if Dr. Galzer could tell me ifvulvodynia and endometriosis are connected in any way?? I have lower back problems, and Iwonder if this is connected to my Vulvodynia. I find that some floor exercises stretchingthe muscles of the back sometimes relieves the burning. Also, an OBGYN I went to fivetimes prescribed oinment called mycolog cream, also called nysistatin trimelyecone cream(not sure I spelled it right). This is an anitinflamatory antifungal cream and sometimes Iresort to it for relief of the sever burning and redness, and it does help sometimes.Also, after urinating, wiping with a wet toilet tissue sometimes helps. These things help,but the burning never really seems to go away. I would be interested to seek a doctor inNortheast Pennsylvania, Scranton area, or New York, or Northern New Jersey who might beable to help. Anyone have any suggestions? Thanks for listening.
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CommentDr. Glazer, I am going to go out of network to a PT on your list recommended by a vulvaspecialist in Cincinnati. My insurance paid for 3 trips to this specialist (out ofnetwork) . My HMO has no out of network benefits. Anyway what would be your suggestion fortrying to get my insurance co. to pay for the "machine" (can't remember thename) that the PT will probably want me to take home? Will be paying out of pocket for thePT, would rather not for the machine ... think it's around 1000. Please respond. Thanks.Jojo
CommentI have been diagnosed with vestibulitis. Have had it about a year. I have been takingelavil for about 6 weeks. I have not noticed any difference. How much elavil does it take?If anyone can help me out, I would appreciate it.
CommentI have also been to several doctors with no help.I was told it could be in my mind.Iexperience burning when I have intercourse and it has been hard for me to get pregnant.Iam glad I heard about this and now I can have my doctor check me for it.Thanks everyonefor your comments. Donna
CommentHello everyone! My story is the same as most of yours- no libido, pain duringintercourse, general irritation of the vulvular area, endometriosis, dysmennorhea, andlast but not least cervical dysplasia. Of course, all of my previous doctors that i have been seeing in the past have told methat i am just sensitive and need some KY and therapy. Luckily, my healthcare plan changedand i met my current doctor who was able to diagnose the problem. unfortunately the onlyspecialist she knows of is located in Washington, DC (an hour away). i lve in Annapolisand work in Baltimore and have been searching the web for referrals in these areas. i havescheduled a call for tomorrow with a staff member at Johns Hopkins- they are conducting astudy on vulvodynia! I will let you all know how it goes and provide the info i have onthis study to anyone who wishes to email me. Take care!
CommentI havejust been told that I have vulvodynia and am going to the U of M clinic for help.I have to wait until August for an appointment, so I would like to hear any input on thisdiease. Has anyone out there had success with any treatment? I have only had this a shorttime, but it is a very hard thing to accept for the rest of your life. I would like anyinformation that any has on this problem.
CommentI hav esuffered for about five years. The thing that helps me with the pain during sexis Lidocane. It's a prescription and numbs the painful region. It does not interfere withtthe actual feeling of sex. At least I can have sex that is not painful, it feels great!
CommentTerry, I went to see Dr. Sevin(I think)at UM. He was horrible. I would never go tot himagain. He told me to have a surgery and diagnosed me with things without a biopsy. You maywant to look into other people. This is not my computer so please don't send info here.
CommentThis is a miracle that i found this site. I can't believe some of the things that I'mreading. I'm in so much physical and emotional pain. Just recently diagnosed withvulvodynia.
CommentHi, like everyone else here I'm suffering from vulvodynia and it's the same old story -unsympathetic doctors, treatments for yeast infections and urinary infections that I don'thave, wondering where the hell I can find someone who will listen to me and help me. I'm25, have had problems with this for EIGHT years (have never had pain-free sex and am nowengaged to be married so would really like to finally experience making love without theagony), and have had the constant pain for 18 months now. For many years I thought I was afreak, it's a relief to know at least I'm not alone, and I hope together we can find acure for this. Some days I do feel desperate though as it is affection my daily life nowand I don't know what to do, the pain seems to get into everything I do at the moment, Ican't even forget about it. I'd love to hear from anyone in the UK who has any advice asobviously treatments etc are different over here. Especially is there anyone out there inSCOTLAND as I've just moved here a week ago? Take care all of you, I'm hoping we'll allget through this.
CommentDr. Glazer and anyone else in the guestbook, I saw you briefly through Dr. Rodke in NY.She is no longer on my plan and is so busy it takes days to weeks to get an appointment orto even get called back. I am looking for recommendation for any doctors in NYC who arefamiliar with the condition and it doesn't take months to get an apoointment. Anysuggestions would be greatly appreciated.
CommentHi! I've written before. I have been diagnosed with Vulvodynia 1 1/2 years ago but havebeen suffering for 2 1/2 years. I used to be really bad, but I am finally feeling a worldbetter! I can wear pants again (still not jeans), I can even have sex! It isn't verypleasurable yet, but it atleast isn't exruciating pain anymore! I beleive that BORIC ACIDevery night helped me and a low-sugar and low-carbohydrate diet. If you are burning andraw, you must first get rid of the bacteria and than the yeast. This is how my doctor tookcare of me. But you still have to be patient, because the i didn't feel results with theboric acid until after 1-2 months. my wedding is this June, and I am hoping to reallyenjoy my wedding night and my honeymoon! I know that it is hard, but we have to keep upthe faith! WE ALL WILL GET BETTER WITH THE PROPER HELP AND WE MUST TAKE CARE OF OURSELVES.GOOD LUCK AND GOOD HEALTH!
CommentThank you so much for creating this website. It has provided me with not only a greatdeal of information on a condition that my physician has failed to diagnose but with somehope that some day more medical professionals will become aware of this condition. It tookme 1 year to find anything about this condition and I educated my physician. Reading theguest registry has made me realize that there are many other women who can relate to thephysical and emotional pain I have been suffering for 3 years. I hope a cure is found forthis debilitating condition which too few medical professionals are knowledgeable aboutnor care about. Perhaps it is not life threatening in a physical sense, but it certainlyis in an emotional sense as I have been through hell with this condition. I pray and hopefor all sufferers that one day a cure will be discovered and I thank you for your work inthis area.
CommentHi,it's been awhile since I posted but have been reading all the new posts and continueto be dismayed at the number of women continuing to suffer.I am doing very well,and havebeen virtually painless for almost 2 months now.Although I occasionally feel some of theburning sensations and the feeling that perhaps I am about to get another bladderinfection.When this begins I immediately begin drinking lots and lots of water to flush mysystem. I then analyze the situation as to what else could be contributing to theburning;such as using toilet tissue in public restrooms,what I may have eaten,etc.I findit very important to take only showers and I use a very mild soap to bathe with(such asIvory)I always resist the urge to soak in a tub.Even when I really would like a long soakin a tub of Aveeno.I notice a lot of the women make mention of soaking in a tub of Aveeno.It's so important to remember though,that no matter how clean your tub may appear to be-there is always the residue of soaps or cleaning products on the tubs surface.So I wouldrecommend only showers!!!The only change I made in my eating habits is that I really cutdown on my soda intake.I wash all my clothes in detergent made especially for baby'slaundry.My husband and I found that for us,any of the lubricants(even Astro-Glide)simplymade the burning during or after intercourse,worse. So we don't use any of that now.It'salso important,I have found, to wash the vaginal area,immediately after sex.This is veryimportant.And of course use unscented toilet tissues(try to stick to the same brand allthe time) These are just a few of the trial and error tips I wanted to pass along. I havetotally given up on using any doctor for treatment After making that decision,I seemed toget better.I think because I knew I had to help myself and that I alone had to beat thisthing.Maybe it's a combination of mind over matter as well as the above mentionedthings.All the tests and swabs and cultures in the world were Not helping with the pain-so I said to hell with all of that. I wish all of you good luck and hope if you decide tohave any of the surgical procedures done,or for those of you who have already hadprocedures done, that it will help you.And perhaps one day this dreadful disorder will bea thing of the past.God bless everyone.
CommentHello everyone, so glad to have this forum to vent and for the chance to get helpfulinfo. It is important to know that I am not alone. I have had vulvar pain for 20yrs. Ithink now that it started when I was about 18yr old and had a severe pelvic infection. Iremember having yeast infections when I was in my early teens but also remember havingburning when I was a little child. I did not experience pain with intercourse until afterthe pelvic infection. My first Dr. tried several things from Burrows soln soaks,testosterone cream, antifungals, heat lamp treatments etc with no help. After a year or sowith out relief, I went to another physician for a 2nd opinion. He mainly thought it wasin my head, or vaginismus. Needless to say I returned to my prev. Dr. who diagnosed mewith "chronic vulvitis". She was sympathetic but felt she could do no more. Istayed with her mostly because she was kind and there were few choices of Gyn's in myarea. I tried for years to "doctor" myself. At times it subsided and at othertimes I felt like raw hamburger meat, but it never went entirely away. I just tried thebest I could to deal with the pain and the marital problems it caused due to veryinfrequent sex. For a while I would have sex with my husband in the dark while biting mylip and crying in silence. Then one day I decided that I shouldnt subject myself to thatkind of pain for anyone, and stopped that insanity. So the emotional stress of constantpain and irritation combined with marital discord over lack of sex brought me to clinicaldepression. I am in therapy for that and am doing much better at accepting myself, and notviewing myself as "flawed". Last year during therapy, I decided it was time totry something new and went to a new Dr.She tried me on birth control pills and premarincream alternating with cortisone cream. No relief! The only other thing she said she coulddo for me is surgery. I'm not ready for that yet, and my research here has led me tobelieve that it prob wouldnt help much if any. I cant seem to get that Dr. to try anycultures, blood or urine tests just to rule out anything. The last few months I havestarted a so-called biofeedback treatment, but it is really pelvic floor muscle rehabusing electrical stim. Its not fun but I am enduring it for I don't seem to have muchother hope. If anyone out there has tried this treatment, please email me with detailslike how successful it was, how long it took etc. 20 years is way too long tosuffer..........
CommentHello I was diagnosed with vulvar vestibulitis last September after having 2 yeastinfections earlier during the year. I had never really had them before and I was 26. Aftercuring those, I was still having pain when trying to have sex. She told me that there wasnothing else she could find wrong with me. I changed doctors (one that a friendrecomended) and was immediately diagnosed by him to have vulvar vestibulitis. . I also hada uti in November and another yeast infection. I have tried the low oxalate diet with notmuch improvement. I have been taking Elavil and have gone off the birth control pill(which my doctor said could not be related to vestibulitis-but I think it could) for abouta month. I had painless sex once two weeks after I stopped the birth control pill. Thenwhen I tried again it was painful- but less than usual. My current doctor has told me hecan not do anything else for me (after trying only the oxalate diet) and wants to send meto a surgeon. I am not ready to take that step. I am not sure what caused me to have vv, but I think it has to be connected to theyeast infections. I do not have pain all the time, only when I have sex or insert atampon(which I do not do anymore). I have read that a couple of people have had successwith Diflucan and would love to hear from anyone with information on it. I am alsoconsidering biofeedback--but I am trying to find an experienced doctor in ATLANTA, GA. Ifanyone can recommend anybody I would greatly appreciate it. Good luck to you all. It is agreat support vehicle to read all of your stories. Reesie
CommentI've been suffering with VV for the past year. Tried numerous types of creams "ofno Help". Has anyone out there had any success with alternative medicine such asacupuncture! Please post if you had some success. I would also direct a questions to Dr.Glazer, Are you doing any research for this condition? If so, what may it be? Keep of thefaith your not alone. L.C
CommentHere I am again and still the same. I would like to hear from anyone that has taken ortakes Evaril. I hear that is the best bet for this at this time. I have read the diseeffects and am curious if anyone has experenced severe ones or just the usual. Pleaseemail, we all need encouragement from each other. HJoping for a cure. Terry
CommentI have written before, just wanted to say that after a year of a very uncomfortableskin condition I have finally been diagnosed with thrush - it is in the hair follicleswhich is why they have not found it till now - four biopsies later. I am feeling prettybad as I have tried many anti-yeast treatments before and none have seemed to work. Thepain won't get better if I keep getting recurring infections. Is there anything anyone canrecommend?? Please write if something has worked for you.
CommentI just had my second biopsy yesterday and also just found this site. I wish I had somegood information to share, but my story sounds like most of the ones I've read here. Ihave had pain and sores at the opening of my vagina for about 10 years. I don't reallyknow how it started, but I've gone to more doctors than I can count and tried many"treatments". Nothing has helped so far. I have heard many guesses as to what Ihave (herpes, sexual abuse, anxiety) none of which are right. The anxiety could be true,but only as a result of not knowing what's wrong with me. I'm 28 and have been married for5 years to a very understanding guy, but I feel bad for him, because we almost never havesex. I've been told by one doctor that my pain is all in my head and I should relax andhave a glass of wine before sex. She made me feel stupid and embarrassed for coming to herfor help. Reading about all the women who face this problem makes me feel like I'm notcrazy. If anyone wants to email me to share any info, I'd be happy to hear from you.Thanks!
CommentI would like to direct my questions to Dr. Glazer and/or others who have had similarrecommendations. My doctor, Dr. Libby Edwards, has currently referred me for biofeedbacktreatment after taking anti-depressants for 7 months. Is it necessary that I continue totake medication while undergoing the biofeedback treatment? I have been told that I wouldneed to take these anti-depressants or a drug known as neurontin in conjunction with thebiofeedback. I would like to not have to take medication or if so, a low dosage only, as Iwas on 150 mg. Also, any suggestions on how to get insurance companies to pay forbiofeedback therapy and/or the apparatus would greatly be appreciated. Thank you.
CommentI am a 21 year old college senior who has been suffering from vulvodynia since Augustwhen I was diagnosed with a yeast infection. Like most of you, I was put on an anti-fungaland the yeast went away, but the burning continued. I have visited numerous doctors andhave been put on 20 consecutive days of Nizoral, Premarin, cortazone creams, and zincoxide (just to protect the area). I had a biopsy in November, but unfortunately it wastaken from the wrong area. I feel like I may finally be in the right hands, as I am seeingtwo doctors here in St. Louis who are knowledgable about vulvodynia. Right now I am onNizoral because I read a book called The Yeast Connection and the Woman which talked abouthow vulvodynia can be cause by a yeast hypersensitivity, and the only way to be pain-freeis to kill all the yeast. Also, I am going to start the low oxalate diet, Estrace, andbiodfeedback. I would like to hear about people's experiences with treatments. I wouldlike to know if you got results from these treatments, and if you did, how long did ittake to feel any improvements? Also, did your symptoms get worse when you first startedEstrace? Since I haven't been able to tolerate anything topical yet, I was wondering whythis cream would be any different. Since this has all started, I feel like a completely different person. In the pastmonth, I find myself crying all the time. I can hardly sit through my classes, and havecontemplated dropping out, but since it is my last semester, and I have a job for nextyear, I will stick it out. One more question...has anyone ever found out that a food allergy can cause vulvodynia?I have a long history of food problems and am wondering if this is the way my body isreacting? ANYONE>>PLEASE EMAIL ME IF YOU HAVE ANY SUGGESTIONS AND STORIES ABOUT VARIOUSTREATMENTS THAT I WILL BE TRYING
CommentI was diagnosed with vestibulitis after the birth of my daughter 10 months ago. I washaving pain during intercourse and thought that I was just not "healing"correctly. I have been to my ob/gyn several times and even to a vaginal specialist. I havebeen on antibiotic and antifungul treatments for 30 days and have been on Zoloft for 6months. The dosages have ranged from 50mg per day to 150 mg per day. Nothing has helped. I have even tried the lidacaine cream prior to attempting sexual relations with myhusband but with no success. My husband is very understanding although this has been a rough year for us with havinga new baby and no sex for nearly a year. I feel very inadequate and guilty and have sincebecome extremely withdrawn and not affectionate with my husband. He wants me to try to bemore affectionate but I do not see the point as it cannot even go anywhere like it usedto. I read on one of the emails that accupuncture has helped someone named Kristin. Sheemailed me that she went 5 times and was cured after 3 but went 2 more times just to besure. She said that she is pregnant with her second child so maybe there is something tothis method. I have an appt with my ob/gyn on monday and she wants me to have another surgery. Ihave had one surgery about 2 months after my daughter was born and found that it did nothelp at all so I am not ready to take that step. I am going to make an appointment with an accupuncturist to see if there is some helpthere. If so, I will keep everyone posted. If not, I am ready to fly anywhere, even to NYto meet with Dr. Glazer. I am willing to do anything to stop this problem and save mymarriage. I feel that I am lucky as I only have pain during intercourse and initial penetration.As I read through everyone's email, it seems that some people have it 24/7 with burningand itching. Fortunately, I do not have those particular symptoms. My heart goes out to everyone experiencing this horrible problem. My thoughts andprayers are with you and hopefully I will be able to write back with wonderful results! will keep you posted.
CommentHi again. I haven't written in a while. I am 27 and have had Vulvar Vestibulitis forabout 7 years. My husband and I are trying to get pregnant, so at the advise of my doctorI stopped taking Elavil. She said I could remain on low doses, but I decided not to takethat chance. Instead, I started calcium supplements - Citracal and started the Low Oxalatediet. The diet seemed to help with the daliy irritaions. However, I think the Elavilfinally flushed itself out of my system, because all of a sudden the symptoms of VVreturned. I can not use the topical cream that helps because it is a class "C"and it contains steriods. The other cream prescribed burned so intensely, I immediatelyhad to get in the shower to rinse it off! I could not stand it anymore and called mydoctor to see if there was another cream I could try. She was all excited and begantelling me about Neurontin. A drug I can take while being pregnant. A drug intially usedto help patients with convulsion. It has been found to help VV patients more the whom itwas attended. I have been on this for only 3 weeks and I have already noticed a tremendousimprovement! I even made it through my menstral cycle without severe pain. I have anotherimprovement to report! When I first started having sypmtoms of VV, I could no longer usetampons during my cycle. Then it progressed to no sex. Well, I have been experiencingmajor pain related to pads. On my last cycle, I decided to try tampons again (which Ihaven't used in 3-4 years). I used my Xylocaine to numb the opening, and I was fine! Ifound I could only use Pla-Tex. It has something to do with the shape. I tried Tampax, butI had to remove it almost immediately because of the way it was positioned. Each day getsbetter...I pray for help everyday. I thank GOD for my understanding husband. I hope oneday I can describe in words how much he has helped me.
CommentI am so happy I found what I'm suffering from! I've searched the net many times,but today I thought I'd type in "vulvar burning" (I always used vaginal) andthere it was! Reading all the letters brings tears to my eyes, and I'm shocked tosee that so many people suffer from this. I started getting the symptoms inJuly. Right when I quit my job of 19 years and relocated half way across thecountry. At first I thought I was allergic to a new and improved make oftampons. But Johnson & Johnson, assured me that they only added morecotton. The woman suggested that maybe the move, and having my life turned upsidedown screwed up my system. Well, I went to doctor upon doctor searching forhelp. They would do tests and never phone when it was negative. (She's inpain, it's not herpes..... oh well) (She's in pain, it's not a yeast infection.....oh well) Unbelievable!! I HATED this city for having incompetentdoctors! They really didn't care. One doctor said "All the tests arenegative, I can't do anything for you." I did find a doctor that gave me acompound of westcort/lamisal and I was pain free for 3 whole wonderful days. Now I'm going to say something that is really off the wall. I've convinced myselfthat I'm allergic to my new home. Crazy huh? It was built in the 70's, couldit have been a formaldehyde insulation house? We did have a sewer gas leak, andsince then I've taped the cracked pipe. Could that be the problem? I plan onmoving in June and I'll certainly write again if the symptoms go away. I quit goingto doctors in November, throwing in the towel and facing the fact that I may have tosuffer the rest of my life with this. But, I have a high pain tolerance, and justknowing that it's not terminal does help. If anyone's pain started in a new home....write me. Good luck to all of you!
CommentATTN. RACHEL_RICARD@BC.SYMPATICO.COM I am trying to respond to Rachel's entry - but Ican not connect with the e-mail address given. Please contact me at jdean@cac.net.
CommentMy four year old daughter has suffered from vulvar pain over the past year and a half.She has been to 5 different doctors for treatment, all the normal stuff has been ruledout. I am interested in learning more about the low oxalate diet, can anybody point me inthat direction?
CommentI've e-mailed a lot of you over the past several months with tips for relief ofburning, etc. but now I wish that some of you would reciprocate and e-mail me with somemoral support. I'm bummed out right now and am feeling sorry for myself. On one side of myvulva it feels like I have a fissure or crack that is causing burning and a feeling ofswelling. I just applied some vitamin E oil to that spot and hope it will relieve theirritation. I would like to get support from someone who knows what I'm going through andwho would like to write to me. Thanks. Sue
CommentTo Sue,who last posted on 3/2/99 I did try to email you but it came back as the emailbeing incorrect. Please verify the email address and repost and I will be glad to sharewith you some of the things I have found most usefull in helping me on my really baddays!!
CommentTo Gayle who posted on 3/5 and tried to e-mail me - I tried to e-mail you too and minedidn't go through either. Please try again or post on the website. I know my e-mailaddress is correct because I've gotten other e-mails since I posted the other day. Thanks.Sue
CommentThis is for Gayle who is trying to e-mail Sue. Maybe you are mistaking the 1(ones) inher address for l's (L's). They look a lot alike on my keyboard. I just e-mailed her andhad no problems with it going through. Hope this helps you reach her. ~Terry
CommentThis is for Gayle and Sue. Gayle, I thought my letter to Sue went but I just realizedthat it came back so I guess maybe those aren't ones in her address. If you read this SueI'm sorry I wasn't able to get through to you but I would like you to know you are notalone and I will be thinking of you. I'll try again soon to e-mail you.
CommentTo Terry and Gayle who tried to e-mail me, the first part of my address is anL(l),marxen1(one)@san.rr.com. Hope you guys can e-mail me now. Thanks. Sue
CommentI have been struggling with vulvodynia for about 5 years now. I have used everymedication imaginable and had surgeries including a vestibulectomy and two flash pump dyelaser surgeries with Dr. Reid in Detroit (who has now left the country without aforwarding address!). I am currently in the middle of an extemely painful"flare" of my condition and am unable to work. Of course, sexual intercourse isalso out of the question. I need to find a doctor who can help me overcome this terriblecondition. My "concern" with vulvodynia is that the medical establishment doesnot take it seriously enough. I hate to sound bitter, but I bet if males had a problemwith their penises getting red and burning, all hell would break loose until a cure wasfound. I have been to so many doctors, and I always reach the "end of the line"with a doctor, when the doctor tells me there is nothing more he can do for me. It'sdisheartening, discouraging, and it's enough to make anyone consider suicide.
CommentI am a white female, 23 years of age. My gyno. diagnosed me with vulvar vestibulitistwo months after my wedding. The topical ointment (Betamethasone Valerate) has not helped,nor has the Zoloft. Is there anything out there to relieve the pain during intercourse?
CommentI've had vulvodynia about 2 1/2 years now--the generalized skin/sitting problems type.I had mild improvement with elavil, but recently began looking into B vitamindeficiencies. I did this because of a variety of other symptoms, which included a newlydeveloped "burning mouth syndrome". Almost all of my symptoms have been relievedsince beginning to take B supplements a few weeks ago. I am a vegatarian who had not been properly following B supplement recommendations.Most B deficient people, however, eat plenty of B vitamins, but aren't absorbing themcorrectly. Please look into this if you think there's a chance this is your problem. Gettested BEFORE changing your diet or supplement intake. You may have a more serious problemrequire injections of B12 rather than oral intake. I also want to point out that while this guestbook is a fantastic idea for which I amvery grateful, if also presents a misleading image. When I first read all these storiesfrom people unable to recover from this problem, I believed it incurable. The truth isthat the people posting here or on the vulvodynia mailing list are those that have hadmore severe problematic cases of vulvodynia, or who have had misdiagnoses or ineffectivetreatments. The success stories only occasionally drop by to give the rest of us hope.
CommentI have a 10 year old daughter who has just been diagnosed with vulvodynia. She has hadthis since age 3 . Originally, I found pinworm one night in her vagina when she wasyelling and in so much pain. She has continued to have this pain, but there is no pinworm.If anyone else can relate to my story, please contact me. I know it's rare for children tohave vulvodynia, but there are cases. Thanks-mjelk
CommentI would like to know more about control with an anti-oxalate diet. Please point me tofurther information. Thank you.
CommentI have read that 100% flannel undyed menstrual pads are the best to use. Does anyoneknow where you can get these at or if you make these yourself? Thanks, Ondreaonctd@aol.com
Commenti am 32, and self-diagnosed as having vulvodynia and ic. i am using st. johns wortsalve on my vulva, topically, as an herbalist i dated recommended using it. i'd love toknow about any vulvar pain specialists in the albuquerque area. im also curious to hearfrom other dykes with this. i believe the onset of my symptoms started shortly aftertaking flagyl, and am wondering about links between flagyl and these illnesses.
CommentUnlike many comments I've read, I have a supportive family doctor who gave me this siteaddress. I haven't read about anyone with my particular problem but I'm hoping somebodycan help. I have twin boys who are 8 months old this week. I have enjoyed being able tobreastfeed very successfully. My doctor suggests that because of nursing twins that myprolactin levels are very high and my estrogen has depleted causing my tissues literallyto shrivel like a menapausal woman. She feels that the pain that I have will get betteronce I finish breastfeeding. My pain is at the 3:00 and 9:00 positions on the labia, forthe most part with attempted intercourse. It's also uncomfortable to have a bath and I'vefound that I have more pain in the evenings after wearing clothes all day. It was so goodto read about similar cases on this site. I have been using a bit of Premarin but amreluctant to use much of anything that will deplete my milk supply. Any suggestions? Mymain question is: Has anyone else experienced vulvodynia while breastfeeding only toreturn to normal after weaning? Thanks.
CommentThank you to the people who have written to me and told me about their experiences, itis very much appreciated. I'm now at the end of the line. I've tried every non invasive treatment and now feel Ihave only one thing left to try - removal of my Bartholin Glands. I have heard some goodand bad results. I'm really scared because I know there might be a chance of me ending upworse. But I can't stand the thought of having this for another 5 years or more! I've madean appointment to see Dr Reid at the end of March to discuss the surgery in more detail.If anyone has any information about this surgery, good and bad please email me. MY EMAILHAS BEEN CHANGED. IT USED TO BE maysearthmoving@bigpond.com BUT HAVE RECENTLY CHANGED ITTO THE ABOVE. Thanks again.
CommentIf anyone has seen Dr. Glazer with successful results regarding the treatment ofvulvodynia, I would be very interested in hearing from you. Please contact me atKlumpkin5@aol.com. Thanks.
CommentHello I am 25 and have been suffering with pelvic pain for the last 8 months,it startedwith a burning stabbing pain and also these weird musle spasms in the vaginal area Ithought it was a urinary infection i could not get over finally the pain was so bad i wentthe the er, there was no bladder infection and they diagnoised me with pelvic inflammatorydisease after running test for STDs nothing came up except a bacterial infection I havebeen treated with 4 antibotics with no success still having buring stabbing irritation myGyno did a laporoscopy which also came up neg she then saidd my problem was notgynocolgical and sent me to a gastroentroligist i has seen him for 2 months with no help,basicaly i am despert i feel my Dr.s are not listening to my symptoms i wake up in paineveryday no Dr.s have even tried testing me for VVS I found out about my looking on theweb, Why is there such a lack of awarness about this disease. I was surprised to see therewas so many women suffering the same as I am.PLEASE if any knows of any Dr.s in theAustin, TX. area that can help me let me know , my heart gos out to all of you.
CommentHi...My heart goes out to everyone of us who suffer every day with this horriblecondition. My story began much like most of you...About a year and a half ago, I wasreally sick, deathly ill with strep throat..I was given a course of antibiotics and I wasnever the same. About a week later I felt a twinge inside my vagina, I went to the doctorand my tests came back negative..At first I was able to continue having sex..but nowsexual intercourse is impossible..because of the intense burning...I have felt every badpain imaginable in that area..Stabbing pains, burning flames, shooting pains.. After 6doctors and a urologist..I was finally diagnosed with Vulvar Vestibulitis...Currently, Iam taking 50 mg of Pamelor..For those of us taking Anti depressants..Make sure you aretaking one that is in the tricyclic family..such as Pamelor and Elavil. Any way I haventseen much improvement..I am pretty much against using any creams because i have found thatthey just give me false hope and exacerbate the problem..I am so lucky to have a wonderfulboyfriend and supportive family...but as you guys know this takes its toll on everyoneafter awhile.
CommentHi again...I dont know if my last posting went through..I am 24 and suffering fromvulvar vestibulitis..I would like to hear from other women who have had vestibulectomy(good and bad) and also hear from other women who have been successfully treated with biofeedback..As a feminist, I am outraged about how we all have been treated by doctors andthe medical community. This is a growing problem..And one often not discussed due to somewomen's embarrassment...You dont just go to a coworker and say "My vagina is reallyon fire today" when you are hanging out by the water cooler. Well..I hope to chatwith some of you soon...Wishing you all pain-free days!!
CommentIt's been a long time since I last posted. Still trying to get pregnant without anysuccess. I am happy to say that I am finally able to have intercourse occasionally so ican at least try to get pregnant (although I still cannot have intercourse regularly but Ihave been given a website that helps to predict the time of ovulation and the best days tohave sex in order to conceive). I have had success with elavil and since Dr. Reid is nolonger in the country I am not seeing anyone who is very knowledgable about Vulvodynia.Does anyone know of a doctor in Ohio who specializes in Vulvodynia? Better yet if anyoneknows of a doctor in Columbus, OH who specializes in Vulvodynia please e-mail me at:StayNprayr@aol.com Still keeping the faith
CommentIn 1995, I began to experience chronic vulvar burning. Later that year, I was alsodiagnosed with obsessive- compulsive disorder and depression. The psychiatrist whodiagnosed me had previously been a gynecologist. She prescribed the antidepressant Luvox(fluvoxamine) for my OCD and depression, and told me it might also help with the chronicpain as well. Over several few months, the chronic pain began to decrease, and a yearafter the initial onset of symptoms, the chronic burning was gone. However, I still hadvestibulitis, which made any kind of penetration very painful. I really didn't know whythe chronic burning had gone away, since I had tried a dozen treatments, but, although Istill had vestibulitis, I found it much less disabling than the chronic burning. Since 1995, I have been taking Luvox 300 mg/day. Recently, a new psychiatrist took meoff of it. A week after being off the Luvox, I started to experience vulvar burning.Horrified, I called my original psychiatrist, who said that I was having a "reboundeffect" after coming off the Luvox. I'm not a doctor, and I'm not trying to give medical advice. But I wanted to share mybelief that Luvox gradually caused my chronic burning to stop, and that when I went offit, the burning returned. Nothing I've done (Estrace, vigilant biofeedback, anti-yeast diet, Elavil, Pamelor,Neurontin) has helped with my vestibulitis. But, again, I found that the end of thechronic burning gave me my 85% of my life back.
CommentAny information would be appreciated. I have Sjogrens plus Fibromyalgia but now myUrologist diagnosed hypotonic bladder. Had foley catheter in for three weeks, now doingself catherization after voiding to measure risidual. Am taking pryidium 200 mg threetimes a day and Proloprim 200 once a day. I will not be seeing him again until May. I alsouse a Viaderm cream a steroid for the inflamed vaginal area. Any advice would beappreciated. Please remember I am a novice on the internet so I hope I have given a goodcase history.
CommentAny information would be appreciated. I have Sjogrens plus Fibromyalgia but now myUrologist diagnosed hypotonic bladder. Had foley catheter in for three weeks, now doingself catherization after voiding to measure risidual. Am taking pryidium 200 mg threetimes a day and Proloprim 200 once a day. I will not be seeing him again until May. I alsouse a Viaderm cream a steroid for the inflamed vaginal area. Any advice would beappreciated. Please remember I am a novice on the internet so I hope I have given a goodcase history.
CommentAny information would be appreciated. I have Sjogrens plus Fibromyalgia but now myUrologist diagnosed hypotonic bladder. Had foley catheter in for three weeks, now doingself catherization after voiding to measure risidual. Am taking pryidium 200 mg threetimes a day and Proloprim 200 once a day. I will not be seeing him again until May. I alsouse a Viaderm cream a steroid for the inflamed vaginal area. Any advice would beappreciated. Please remember I am a novice on the internet so I hope I have given a goodcase history.
CommentI haven't posted for a while, but I have another gyno appoint this Thursday, so I amtrying to be prepared. I have been on testosterone cream for 5 weeks with no (positive)results. I think my next step is a steroid cream. I am starting all the treatments againfrom scratch with the new doctor. The last doctor said he couldn't help any more andreferred me to Dr Chenoweth. I was annoyed at first, but I'm optimistic now, as he is anexcellent doctor. He says he's never lost a patient or given up on a patient withvulvodynia. It is always so great (but at the same time terribly sad) to hear of all theseother women in my same situation. It makes it much easier to deal with knowing that I'mnot the only one. Thanks for the opportunity to write about my problems. I would like to hear from anyAustralians or women who have seen a sex therapist ( I have, but did't have a goodexperience). I am really in need of counselling in this area as 3.5 years withoutcomfortable sex is a lot for a newly married 22 year old to deal with sometimes :)
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CommentHi. My name is Dana, and I am 24 yrs. old. I've been suffering, as all of you are, withVulvodynia. What horror! For almost two years, I've itched like crazy! Visited all thedoctors--did the natural/herbal thing, but no relief. I had been using Vagisil five or sixtimes a day to control the itching or at least keep me sane. I think, though, that Vagisilhas been the problem. Apparently, I was having an allergic reaction to this stuff. Whatwas helping me was hurting me--tremendously. I've been off of it for about a month and I'ma little better. Can your skin continue to itch after the allergen has been removed? Howlong? I think I had an initial yeast infection, but the Vagisil has continued to make meitch. Any advice? Let's be encouraged! Without hope, we have nothing. Dana
CommentI have syffered from vulvodynia for approximately 1 year now. I have the complete vulvaarea cauterized and that only stopped the pain temporarily. My gyn doctor is going to do abiopsy to see if the lesion is precancerous. I just want some relief form the constantpain.
CommentAfter reading about Dr Glazer's treatment, I've tried doing my own pelvicexercises. Within one week my pain had subsided. I've suffered for 9 monthsand this relief is wonderful. I'd certainly recommend this very easy exercise to all ofyou suffering from this. Hey, it's free! Just tighten the muscles in yourvulvar area and hold it for as long as you can. A count of 5 can be worked up to acount of 10 in no time. I do it standing in lines at grocery stores, driving in mycar, watching TV.... After all, isn't this technique really what the biofeedback isall about? Except that you can do it all the time? Good luck to you all!
CommentI suffered from vulvodynia in early 1994. At that time, i would have given ANYTHING tohave the kind of support that has grown over the years for this disease. Fortunately, Iwas referred to Dr. David Foster, head of gynocology at Johns Hopkins University Hospital.Dr. Foster perscribed a tri-cyclic drug called Desipramine and I am here to say that I amliving a normal, full life completely PAIN FREE. I am horrified at how many women subjectthemselves to unnecessary surgical procedures in order to alleviate the pain. Please,please, please -- do your research and try several avenues before you turn to surgery!!
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CommentHello. I posted a letter earlier in this guestbook. I would like to thank everyone whowrote me afterwards. The letters got me through some rough days - it is nice to know I'mnot alone and someone understands how hard this is. I have been having a few very baddays. I was sore and red yesterday and today the sensitivity is just about driving mecrazy. Does anyone out there have extreme sensitivity and if so have you found anything toprovide relief? My period is about to start so maybe it is my hormones out of whack andI'm hoping it will pass in a few days. It is just so hard to live with. I'm really feelingblue, I'm tired of crying and it is hard to keep looking forward. If anyone has anysuggestions I would love to hear them. Thanks. ~Terry
CommentI am taking Elavil and I was wondering if anyone out there has found that it worked forthem? I have no bad side effects and am feeling some better, but it's only been two weeks.I would liketo know if anyone has found long term relief<
CommentI do not have an e-mail address, so I will just leave a message here. I wrote a commentearlier in the guestbook( I don't remember which one). I have been taking Elavil for aboutsix months and have had a good level of improvement. I took about 6-8 weeks before I feltany better. It is no longer extremely painful to sit for long periods of time or to wearblue jeans. My husband and I have even been able to make love a few times with usuallyminimal pain. I just thought I'd leave this message for anyone who wonders whether Elavilworks or not. I know every person is different, but I hope it will help others like it didfor me. I am not cured but is easier to deal with now
CommentHi Dr. Glazer -- I was just revisiting your website and I wanted to write and let you(and anyone else reading this) know that I am still pain free after my visits with you. Isaw you 2 years ago and I credit not only your method, but also your personal advice to myhusband and me with my recovery. I have had no setbacks since my last visit 2 years ago! I was reading DANA's entry of 2-4-99 and wanted to say that I had a similar backgroundand success with Dr. Glazer's protocol. I know not everyone has access to NYC, but I wouldrecomend trying biofeedback through a PT in your area. You might be feeling thatbiofeedback does not give immediate relief, or costs too much, but when you add up all theother treatments and the time invested in them, it is not so out of the question. And itis not invasive. If you even have a question about whether or not you might be helped by biofeedback youshould try to e-mail Dr. Glazer and get his opinion and a list of PT's he may have trainedin your area. He is very committed to helping women like us who suffer. Good luck to all.
CommentThanks Amy for writing. It is encouraging to hear that Elavil worked for someone.Anyone else out there that has had positive results from Elavil. I am hoping that itdoesn't stop working after I have been on it for a while. Also does anyine know of anyonethat has ever been cured of this condtion? Please e-mail me as I need to hear somethinggood for a change.
CommentIt has been a few months since my last post. I have seen alot of improvement. I lastwent the the GYN in Dec. and he tolt me to use Lidex on the vestibular glands twice daily.It helped alot and also what I think has helped the most is that I started depo-provera onDec.1/98. I dont know if some of you are familiar with it, but its a contraceptif shotgiven every 3 months. I have had 2 shots so far, and have not had a period, only spottingwhich is normal. I noticed when the spotting is heavier, the burning starts real bad, andwhen it gets lighter, it stops. I will continue with it and the spotting is suppose tostop along with the period. I really believe this is what has helped me because it wasalways worse when my period was about to start. I'm not a doctor and I'm not saying youshould use it but it could be a possiblity if you need a contraceptif. I can now finallywear blue jeans and be comfortable which I could not do before the depo-provera. I am onlytelling everybody this to offer some hope for this awful condition. Good luck to all!
CommentI can't leave an E mail address at this time as I do not have one, but I'm hoping thatif anyone can help with my inqiury that they will leave a message for me in this guestbookand I will check back. My case history would seem to be the same as so many of the other women in this book.I've been misdiagnosed again and again but finally received a diagnosis from a doctorwhile on vacation in the UK. I was diagnosed with vestibulitis. My symptoms are not assevere as many in this book. My main concern is that I have terrible pain duringintercourse to the point that it has become impossible. My husband is very understanding,but we want to solve the problem, as we hope to have children in the future.....difficultif you don't have sex!!! I know I have vestibulitis, but what I need to find is a doctorin the Los Angeles area who is knowledgeable about this problem and is willing to help mewith varying treatments until we are able to find one that works for me. Can anybody helpme with a suggestion of a great doctor? I would also just like to say that it is so good to have found this website. You feelso isolated when you have this terrible condition, especially when doctor after doctorinsists that there is nothing wrong with you physically and you know there is!!! Hang inthere everyone there is a cure out there....we just have to find it!
CommentI would like to know of a doctor or support group in the Atlanta, Ga area who can helpme with my daughter. I know she suffers from this condition. She is only 16 and reallyburns and also she has the stabbing pains. Please if someone can help, please e-mail me atphess1@mindspring.com thanks, elizabeth austin
CommentI too have vulvodynia. I believe mine started with a yeast infection. I then had abacterial infection and a urinary infection which my gynocologist kept prescribingmedication after medication. The burning just got worse and then came the pain. I couldn'tsleep. I then saw an infectious disease doctor who found another yeast infection. Shepresribed diflucan and advised that all the topical creams were just adding to theproblem. When my problems persisted she recommended another doctor that had treated herfor other problems. Well I now have relief. I hope some of these tips will help youbecause I now what you are going through. To alleviate burning when urinating, punch ahole in the bottom of a bathroom dixie cup. Place the cup over the vagina and urinate.This keeps the urine off the skin. Do not use these products - you and your husband -mouthwash, handcreams,nail polish remover. Use only Dove soap for sensitive skin. Ivory istoo drying. Fragrence free detergent, no liquid bleach, double rinse all underwear. Wearonly white cotton underwear, microwave for 20 seconds to kill yeast before wearing. Alsostretch cotton underwear before wearing so it doesn't rub skin. Use 100% vegetable oil asa lubricant. It's pure and won't cause any irritation. Use the same shampoo all the time.I find that some foods make it worse so jot down what you suspect and avoid it. I alsotake Claritan when I feel it getting really bad. Claritan is for allegies. These tips haveimproved my symptoms. I do have some pain free days. But the pain,itching and burning doesreturn after sex for a day or two and them calms down to mild or pain free. I also haveflare ups without any explanation. I take calcium citrate twice a day and a Tums once aday. I thank God that mine has improved over the past two years, but am fearful that itcould get worse again.Thanks for this website. It's helpful knowing we are not alone.
Commenthi there I recently saw Dr Glazer in Ny and was started on his protocol sometime inOct. I am not yet pain free but do see an improvement I take Calcium citrate twice daily,diflucan, and baclofen for pain. I have also had one caudal nerve block and am going to goin for another in a week or so Sex is still pretty damn painful but I can exercise a bitmore and not focus on the pain so much. Unfortunately I am not good at sticking to dietsbut each day I plan on sticking to the low oxalate diet and a low sugar low carb diet toprevent yeast I do feel like my problems started from parasites that I had in my body plusmany antibiotics given to me. I have tried everything and Glazer's approach helps a lot.In addition I feel that my otehr medications help as well I also use Estrace in the areatwice daily and boric acid douches twice a week What a regimine! If there is someone in LAwho needs a doc or info please email me. I recently moved out here but have found a goodPT and doctor out here :Jodi" had posted sometime back but did not leave her email soJodi if you read this I can give you some info in the Bev hills /Valley area Hope all iswell and take care everyone Jill S  |
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