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CommentWelcome to the Ninth edition of the vulvodynia.com guestbook.
CommentHello, it has been awhile since I posted. I wish I had some good news to report but Istill feel like I'm going around in circles trying to figure this all out. I have yetanother app. with my gyn. in a few weeks but it almost seems pointless to go but I havenowhere else to turn. I am so frustrated, angry, confused, you name it and I feel it aboutwhat my body is putting me through. Does anyone else experience an increase in burning ifthey sit for a long time? My husband was going to Saint John this past weekend to run amarathone and he really wanted us all to go so I was feeling so guilty about never wantingto do much that I said I would go. It is only a 4 hour drive from home but by the time wegot there I was so sore and the redness and burning increased even though I tried to siton a cushion and not put direct pressure on the vulvar area. The next day we drove homeand I was in even worse shape. I had about 4 cracks in the creases of the skin. They stingand hurt so bad. I can't even sit at the kitchen table for too long without having theredness and burning increase. Intercourse does the same thing to the skin and I've noticedmore burning the week before my period. I cannot live a normal life like this, I'm at mywits end. I know I cannot go no like this for much longer. I feel so much guilt because Ican't be the kind of wife and mother I want to be. This has seeped into every inch of mylife and it is taking over. I have been dealing with this for just over 6 years and I havetried to fight the good fight but I'm growing very weary. I am totally worn out by allthis. This just isn't fair - I'm not a bad person, I'd like to know what I did to deservethis. I would give anything in the world to have my old life back before this all started.I am so tired of applying various creams and taking baths that only offer temorary relief.My bathroom is beginning to look like a pharmacy. If anyone else is trying to deal withburnig, red cracking skin I would love to hear from you with any sugestions for relief. Ihave had three biopsies which showed a thickening of the skin and a minimal viralinfection but I feel like there is something there that the doctors just aren't finding. Aperson should be able to sit and not turn blood red and burn and have the skin crack. So Iwould love to hear from some of you if for nothing more than some moral support because asI said I've taken just about all I can. ~Terry
CommentVulvodynia has helped to ruin my marriage. Being diagnosed with HPV finished it off. Idespise these diseases and wish with all my heart that they could be cured. I am verysorry for all of the pain my fellow sufferers have gone through. Best of luck to all ofyou.
CommentHello--I recently posted a long message explaining my experience with vv. It was at theend of the previous guestbook and I thought it might be worthwhile to post another message(in case no one gets to the other one). I have been suffering for over 3 years and seenmany doctors. I had finally found one that was treating me with amitriptylene anddiflucan...only to find out he retired and did not inform his patients. The medications(especially amitriptylene) need to be maintained. I would greatly appreciate anyinformation on doctors in the new york city area. I too am at my wits end and would loveto hear from anyone for support. Take care and thank you...
CommentHi! I would like to receive emails from other women with vulvodynia. I am feeling verydepressed and could use some support from someone who understands. Thank you.
CommentThis is going to be a long one. Sometimes I really need to talk to someone but I reallydon't have anyone who understands, so I write everything down in my journal, and I cry alot, and I fantacize alot, for its my only escape. I've had this VV for just about 8 yearsnow. Started after taking long-term antibiotics and developing a yeast infection. In thebeginning the creams worked, yet the burning kept coming back. After a few tries theburning was back to stay and no cream gave me any relief. So I've been to Dr. after Dr. Ikeep feeling like I had an infection. After the first year, I gave up on the Medical Dr.'sand sought alternative therapies, and that was the first time something I took made anydifference in the constant burning. But it wasn't the answer I was looking for either. I'dfeel a little better, than get horribly worse and on and on, all the while tryingdifferent things. All kinds of vitamins, homeopathy, herbs, creams. I got to a point whereI didn't have the "burning", but I had the pain and it was worse on the leftside. I don't want to bore everyone and go thru 8 years of hope and frustration andsetback, but in just the past month (after doing "OK" - which means I had thesoreness but no severe burning), I started burning again, like an infection. I was takingan arthritic supplement which had MSM in it. Now I don't know if that was the cause ornot, I stopped taking it and went to my local Dr. You have bacteria and white blood cells,indicating infection she says. She prescribed Cleocin cream. So i'm scared to death ofcreams, but I'm burning and I thought, well maybe this will do the trick. The MSM productI had taken was supposed to make cells more permeable, and my crazy thought was that mycells were now releasing all the toxins causing this pain, thus creating an infection. SoI started the cleocin cream last night, I'm supposed to use it twice a day, and I couldswear my vulva area is more swollen, certainly not any better burning wise, and maybeburning even more. Its so hard to tell when you have this every day. I had written to 1girl who made an entry and maybe she didn't receive my e-mail or is just not up to dealingwith a stranger, but if someone wants to contact me and offer any advise, I'll surelisten. I was seeing a Dr. in NYC who feels this is allergy-related, but even avoiding allthe foods and diet, etc. I didn't notice any difference, but it sure did beat feeling thisbad. I don't know whether to finish the cream or not, you get to a point where yourdesperate and I'm at that point right now. Please help!!
CommentHello, My name is Nicole and I have been suffering from vulvodynia for about 4.5 yearsnow. It first started out as what I thought was a bad yeast infection, I was itching andred and after intercourse a few times I would want to scream from the pain, the onlyrelief I could get was filling a bath with cold water and squatting in it. So I let thisgo for a few weeks and just thought it would go away with yeast infection treatment. Butwhen the pain continued I finally went and saw an M.D. and he messed around for a wholeyear before my mom told me that I needed to see a specialist. I am sorry I wasted timewith that doctor, he tested me for HIV and all kinds of STD's and I still had noanswers.and I should mention that prior to my initial painful vagina I had been on amedication for an infection I believi it was Flagyl, and ever since then I refuse to takeantibiotics, because I believe that is part of the reason for my problem. I went and sawan OBGYN and he ran some tests on me and he took a biopsy of my labia and the best hecould come up with was a diagnosis of HPV. He referred me to a specialist at UC Davis inCalifornia, and my first visit with Dr Stice at Davis he told me that the diagnosis of HPVwas ridiculous, he said that most of the females he was treating had been sent to him witha DX of HPV, and in fact he said that most doctors have no clue what Vulvodynia is and sothe best they can dos is diagnose with HPV. So after treating with him he prescribed mewith Amitryptilene which has helped a lot, I also started seeing a Physical therapist forbiofeedback which showed me that my muscles on a scale of 1-10 were a 10 which were makingthe entrance to my vagina tighter and made sex even more painful. So with her therapy Ilearned how to control my muscles and how to do ecercises that would loosen them. I alsogot a list of foods high in Oxalates and I did some of my own experimenting, I noticedthat if I ate the foods on the list I would have bad flare ups and If I did not eat thosefoods, sex with my husband would be so much better. These days I have Pain and on a scaleof 1-10 I range anywhere from a 2-5, before my honeymoon last year I was very strict withmyself and ate none of the foods on the list and I had absolutely no pain on my honeymoonThank God. So basically I am just taking my meds and watching what I eat. If you want totalk or anything please please please E-Mail me.I would love to hear your story andtreatment plan.
CommentI wanted to share some GREAT news with everyone. I've had vv for almost six years. Itstarted just about 1 1/2 years before I got married. It came on fairly suddenly. For abouta year, no doctor knew what I had. Anyway, I've been tolerating & suffering with thepain & burning for appx 6 years. Just 2 weeks ago my husband & I got a pool put inour back yard. Ever since then, I've had almost NO PAIN!!!! It left almost as suddenly asit came. The only thing I've done different that I can think of is swim everyday! I feel99% pain free! And it seems to be getting better. For the last 2 weeks, my husband & Ihave been having the honeymoon that we never had, & it doesn't hurt! I just can'tbelieve it & my biggest fear is that it will come back. So I'm still doing all thestandard stuff: A&D ointment, mycolog, no fabric softner, All Free & Clear, Dove,loose clothing, etc. There were so many times after intercourse with my husband that Ijust bawled out of frustration & pain. I thought it would never go away, but I thinkthis could be it. I just keep praying that I will keep feeling good. I hope that this willgive the rest of you some small bit of hope. I just wanted to share something positive.Hope you're feeling a little better soon too.
CommentI like most of you have been frustrated by the inability to find an effective treatmentfor the pain and burning. But I recently came across a site that talks about vulvodyniaand pelvic pain from a different perspective, as part of a disorder that can cause otherpelvic symptoms as well. The cases reports are quite revealing, and made me realize thatthere may be more to my problem than just vulvar pain. If anyone is interested in thissite, go to www.ppodsyndrome.com. I hope this is of help.
CommentHi-I've contributed many many times here and read every new entry ..well I justfinished reading one from a carolyn about how swimming in her pool seemed to help her.I'mglad if it does- but do not recommend everyone trying this as a means of helping. I saythis because I too have a pool and have been unable to swim in it for 2 years now becauseit makes my burning and pain MUCH worse.I attributed this to the chemicals in the water.I've tried a few times as a test to see if it is indeed the pool water and find that itis.BUT I did also discover on days I absolutely want to get in the pool-I limit my time inthe water and IMMEDIATELY take my swim suit off and shower as soon as I get out.
CommentHi-I've contributed many many times here and read every new entry ..well I justfinished reading one from a carolyn about how swimming in her pool seemed to help her.I'mglad if it does- but do not recommend everyone trying this as a means of helping. I saythis because I too have a pool and have been unable to swim in it for 2 years now becauseit makes my burning and pain MUCH worse.I attributed this to the chemicals in the water.I've tried a few times as a test to see if it is indeed the pool water and find that itis.BUT I did also discover on days I absolutely want to get in the pool-I limit my time inthe water and IMMEDIATELY take my swim suit off and shower as soon as I get out.
CommentWOW!!! I just finished looking at the cases in the website Cathy had found (letter of8/21) and I can't believe it. Some of them describe me, and what I've gone through almostto a T. I took the self assessment questionairre and scored quite high. At least I havehope that there may be another, and perhaps more effective, way to get rid of the pain. Toeveryone still searching, READ THE CASES AND DO THE QUESTIONNAIRE at www.ppodsyndrome.com.
CommentI'm in need of some advice if anyone knows about this. Unfortunately I possibly have abladder infection and am having extreme pain with that. I've tried to hold off until Ifind out my test results which I hope will tell us something, but the pain I'm in isalmost overwhelming right now so my doctor has decided to put me on Bactrim. I am one ofthose believers that antiobiotics have caused my vulvodynia so I am totally upset andstressed out that I have to take an antibiotic. I have a homeopathic doctor who gave me anatural protocol but I believe it will cost around $200.00 to get all the stuff he wantsme to take and I really can't afford that. Has anyone had to take an antibiotic recently?How did it affect you? Does anyone have alternative suggestions?
CommentI recently found out I am pregnet.Can anyone tell me how they got through pregnacy withvulvodynia? Thanks, Jen
Commenti have just been diagnosed with vulvadynia, and my doctor has instructed that i takeboric acid (as a suppository) along with a low oxalate diet. i have been finding all theinfo i can about this disease on the internet, and i have found only one isolated articleabut boric acid. i was wondering if anyone else knew anything about it as a treatment forthis disease.
CommentI have been just recently diagnosed with vulvovestibulitis. I had my second child 10months ago. I had a difficult labor (first child was C-Section) and a 4th degreeepisiotomy. I waited for it to heal month after month, going to my doctor always sayingthat I was having pain during intercourse only. They kept telling me "give it anothermonth". Finally, my doctor scheduled surgery for "revision of episiotomy"even though she was "baffled" and couldn't diagnose me. I went to Boston for asecond opinion and was diagnosed immediately. I am scheduled for surgery in a couple ofweeks. I didn't like the other alternative - the cream you apply to numb the area justprior to intercourses. I have been reading the guestbook and keep coming across "lowoxalate diet" and "calcium citrate". Can someone e-mail me and explainthese to me and what they do. I have searched the web site and can't find definitions ofthem and why they are used for possible treatment. Also, just for information, I was 100%fine until my delivery. I also started the Depo-Provera shot three months after mydelivery. I have not taken any antibiotics in the past year. Also, anyone who has had thesurgery and has any thoughts, please e-mail me. Thank you and I want to express my caringto you all. It is awful to feel in pain during intercourse and to avoid your partnerbecause you know it's not enjoyable.
CommentI have tried various treatments. Some have helped and others have not done a thing. Iwas diagnosed as having vulvodynia about 1 year ago. There are several things that couldhave contributed to this problem. I was working around chemicals, metals (I am allergic tothem), nitrate film. I had a car accident that injured my lower back. After the accident,I started having migraines and irritable bowel syndrome. So many things happened to me atone time. This makes it very hard to pinpoint a cause. The one thing that really sets offmy pain is food. I cannot have salty or acidic foods. I am staying away from oxalates. Mybiggest problem is with proteins. Has anyone ever heard of such a thing? Why is foodcausing me so much pain? Is there anything that can be done about this?
CommentI just discovered this web site and cannot express how much your comments have helpedme. If anyone knows of a good DOCTOR IN THE CHICAGOLAND area
CommentI'm back. My last comment was cut off but I was beginning to ask IF ANYONE KNOWS OF ADOCTOR IN THE CHICAGOLAND AREA FAMILIAR WITH VULVODYNIA. PLEASE PLEASE PLEASE E-MAIL MEAND LET ME KNOW!!
CommentA few months ago I posted a note regarding a new drug my gyn was putting me on,GABAPENTIN. I said I'd let you all know if it helped my vulvodynia. I am happy to reportthat for the first time in 3 years I can sit normally and put pressure on the vulva. I amwalking normally too. I feel pretty much normal most of the time! I am on a dose of 4800mg/day (4 capsules of 300 mg each, 4X day). My gyn has 11 other patients on this drug andthey have all shown varying degrees of improvement. Some have even resumed sex. I havealso had no ill side effects apart from dry eyes which I treat with artificial teardropsseveral times a day. Hope this information helps some of you.
CommentI was wondering if there are any doctors practicing the Glazer protocal in alberta,Canada. I have a friend who has vulvodynia and been to see many specialist, who don't seemto know much about this disease. I would be wonderful if someone could give me a name andnumber for her to see. She pretty much exausted all avenues so far.
CommentHi, all I had to do was read the introduction and it explained a lot of what I am goingthrough. I am glad I found this site. Thank you.
CommentPutting a name on this condition helps a little when at first not knowing why and whatthe problem is. I was starting to think that my boyfriend and I were creating negative chemistry whentogether. I look forward to reading and learning more about this condition and natural healthyways to combat it.
CommentHi, It's been a long time since I have posted any messages on this site. I am trying todeal with VV among other MAJOR problems in my life. I am so sad, frustrated and tired ofhaving to deal with crap in my life. I was attempting to get pregnant and have been tryingsince November 1998 but to no avail. I guess the main reason why is because it issometimes hard to have intercourse with vulvodynia (at times, impossible). I have hadvulvodynia since October 1990. It is very stressful for me right now because my husbandand I had to move in with my mother who has terminal cancer. I am doing the best I can totake care of her but we all know that when stress is high in our lives, the demon I callvulvodynia gets worse. I feel so cheated. I am a christian and I know that God will notgive us more than we can bear but I just don't know how much more I can handle. Pleasepray for me ladies as I feel so weak and tired. :(
CommentI was told that herpes is the only thing that can cause small cuts or tears on thevulvar skin. Is this true? Please someone respond as I am majorly confused. Thank you.
CommentRe:Tamara-I really don't believe Herpes is the ONLY cause for vulva tears. I'm noDr.,but my daughter has had that for several years and has never ever benn told she hadthat! She seems to develop a tear during her periods when she wears pads-she won't weartampons..hope that helps ease your mind.A second Dr's opinion is needed for you I think.
CommentIf anyone is considering acupuncture to reduce the coccyx and rectal pain associatedwith Pudendal Neuralgia, I would suggest attempting to try the acupuncture for severalsessions. Although I am in the process of trying acupuncture, it has not cured the vulvarsymptoms but has to some degree reduced the coccyx and rectal pain . I will attempt 2 moresessions (that will be a total of 6) before I decide to take a new route. I understandthat some women have tried acupuncture many times but the possibility of the acupuncturistnot placing the needles in the right spots could be the reason that the treatment was notsuccessful. If anyone has had success with the acupuncture or other alternativetreatment(s), I would appreciate a response and suggestions or simply reply with yourpersonal experiences related to alternative methods. I also had one chiropractic sessionwhere he did a spinal and lumbar adjustment. I have to say that I think that is when theseverity of my leg tingling and numbness subsided, so there me also be some value in goingthe route of a chiropractor. I am hesitant however to continue with chiropracticadjustments for fear of bone, spinal or other related problems which may occur as a resultof adjustments, in the future. Any comments? (no PPOD comments please). If anyone else hasPudendal Neuralgia and has not contacted me as of yet, I would like to hear from you. Iactually had one day last week where I felt 50% normal for about 7 hours and it remindedme of the REAL me I've all but forgotten. Has anyone else had consecutive hours, days,weeks or months of recovery or near recovery? What do you think contributed to therecovery?
Commentif anyone has had small cuts/ abrasions that come and go in a few days can you pleasewrite in and let me know what they are like and if you know what causes them. i get littlecuts one at a time in different places on my vaginal skin that last about 1 - 3 days.someone mentioned that her daughter get them when she uses pads - how long do they usuallytake to heal? hearing from anyone else who has gotten these cuts would really help. mydoctor said they could be caused by yeast or simply my skin just splitting like dry skinon your lips splits but of course i am fearing much worse!
CommentWell, after reading through the guest book, I feel not-so-alone! I was diagnosed withvulvodynia about a week ago. I feel somewhat lucky because I have suffered for a yearprior to diagnosis compared to others of you who have suffered for so long not knowingwhat was the matter. The most frustrating part for me is the fact that there is noexplanation or cure. I am so very glad for this website where each of you share your infofor treatments as well as your feelings. I have been engaged for 1.5 years. I am beginningto wonder if this won't ruin my future. My fiance', for the longest time, thought I wasmaking this up just so that I didn't have to have sex. How frustrating! I could absolutelystrangle him sometimes! If he could experience one day in my life with this pain....well,we all know what would happen then! I went to my first "therapy" session todayand that is where I was informed of this site. My therapist forgot to give me the infosheet on the foods that I should steer clear of. What are we talking here? Junky foods orwhat? Thank you all for sharing. I must admit, after reading some of your enteries I didshed a tear or two!
CommentHi, I have been diagnosed with vulvodynia just in the past 3 months. It is reasuring toread some of your comments. I am being treated with anti-depresents and HRT. I am 50yeaars old. Has anyone had any luck with this treatment. I haven't been able to beintimate with my husband for 8 months. I am affraid he will lose patience with me. ThankYou All for this website.
CommentChristie and Tamara - those small tears and abrasions you are talking about are thevery simptoms which eventually lead me to be diagnosed with vulvodynia. First my doctorthought it was yeast infections, then tested me for STDs, but eventually came to theconclusion that i had vulvodynia. I get them when i have sex and sometimes when i am on myperiod and wear pads. They usually heal fairly quickly - within a couple of days. hopethat helps. Has no one out there heard of using boric acid to treat this disease? i guessi am the only one, and will let you all know if it works.
CommentI WAS a vulvodynia sufferer and added a letter in the past guestbook. I check in fromtime to time just to see how you are all going. My vulvodynia was caused by taking atetracyline antibiotic, it lasted for 2.5 years and I have been pain free for 1.5 years. Itried everything, but nothing worked, except time. My doctor told me "it just takestime, think positive" and from my experience, if you have one good day, you WILL havemore.
CommentI just wanted to thank the women who wrote to me about their pregnancies and deliverieswith their VV. I fought for my right to a c-section and won!!! I feel great. I am on thebirth control pill to regulate my hormones. I suspected I had a hormone problem when thewhole time I was pregnant the VV went away. It seems so far that I was right I am 90% painfree. I feel like a normal woman again.Your emails of encouragement were a great comfortto me. thank you! I had a boy, Michael, on June 15 1999.
Commenthaven't posted in a while and just wanted to encourage everyone to keep up the fight. ifound out a few months ago my husband cheated on me just before we got married, and when iasked if he would have if i wasn't sick, he said probably not. i wonder if anyone else hashad problems like this? we are still together, and still unable to have sex. i know now heunderstands more what it is like for me, and doesn't put any pressure on, which is great.there is no point feeling guilty about not being able to have sex, all it does is makethings worse. in general, i am feeling a lot better than i have for a while - i have beendoing pelvic floor exercises with a physiotherapist, which are, i understand, the basis ofdr glaser's protocol. please contact me if you are from near canberra and want a physiowho can help. the pain is still here but i feel it is not so bad. i am thinking aboutpregnancy and know i couldn't do it in the state i am now, but am aiming to be better bynext year so i can start practicing the conception! i have read today so many people feeling so helpless and hopeless. i too felt like thatand i don't know what has made the difference - all i know is i feel there is a light atthe end of the tunnel, and i know i can make it there. if we all support each other, weall will get there.
CommentDr. Glazer, We need another guestbook. The information provided only takes us up to 8/16/99. Pleasedon't forget about us. Your guestbook is the only hope we have to speak to others who aresuffering with the same condition.
CommentHello- I scheduled a chat but have been unable to connect and chat with anyone. Pleasehelp me with this problem. Thanks Kay
CommentI am 27 and have had vulvodynia for 10 years - yes for my whole sex life! I didn't evenknow what it was until just a few years ago. I was so relieved to find out it wasn't allin my head and that I wasn't the only one with this problem! I used to cry almosteverytime my husband and I tried to have sex. That made him feel awful and me too. Afterseveral doctors, when I found out what the problem was, I was urged to have a vulvectomy.I was willing to try anything. I'm not sure that was a good idea and don't think it didany good. The recovery was horrible and I had to go on disability from my job for a fewweeks. Then I was put on Elavil. It seemed to help a little which made my husband and Idecide to try to have a baby. It took us a year to get pregnant, mostly because sex wasvery infrequent. Now I have a beautiful 11 month old son. He is the joy of my life. Thepregnancy and delivery didn't seem to effect my vulvodynia other than it doesn't seemquite as bad now. I have a wonderful understanding husband who has stood by me the whole10 years. It seems like the world is obsessed with sex and I get so sick of sex beingplastered all over TV. I used to feel like a freak. I had no interest in sex since it hurtand felt so bad for my husband. I was ready to divorce him so he could live a normal lifebut he wouldn't let me. I hope to see a doctor about Dr. Glaser's protocol. Has anyoneelse done this? Some of the things I notice that irritate the VV are: toilet paper -Northern is the only kind I will use; tight underwear and clothing with spandex; walkinglong distances; my period; tampons ( I never use these anymore); when I do have sex, weuse the pull-out method (except when we were trying to get pregnant)-the semen burned.Things that seem to help a little: keeping the vaginal area dry (after showers I use ablow dryer on cool heat); keeping the area extra clean (but don't use douches - theyirritate). I am no longer taking Elavil - I didn't like the side effects (weight gain, drymouth, drowsiness). It is good to know I am not the only one with this problem. It is aterrible disease and I wouldn't wish it on my worst enemy. I feel for each one of you andhope you all can find the happiness that I have despite the vulvodynia. Please let me knowif any of you have seen a doctor about Dr. Glaser's protocol. I will keep you posted whenI try it. Thank you Dr. Glaser for setting up this website. It will be a life saver formany women.
CommentThanks to all of you who post encouraging comments...Please keep it up. They are fewand far between, but they really help me. It's so important to maintain a positiveoutlook. I especially liked the statement, "IF YOU HAVE ONE GOOD DAY, YOU WILL HAVEANOTHER." We need to fight the impulse to live in the moment of pain and think thatthe moment will never pass. I also appreciated a posting in the last guestbook (I think)that acknowledged our trials but said how lucky we are that this condition, dreadful as itis, is not visible like some disabilities are. Yes, vulvodynia affects the very fabric ofour lives, but our lives can still be rich and fulfilling. We are confronted with sex atevery turn, especially in the media. If you've lead a sexless life for the past few yearsas I have, it can be very depressing to constantly see sex in print, in the movies, TV,etc. One thing that's helped me deal with this is the realization that Americans talkabout sex far more than they do it. We may miss sex, but it is NOT necessary for a trulyloving relationship (that's from my wonderful husband). And who knows, someday we may beable to have sex again. Wishing you all pain-free days....
CommentI have just finished reading through the current guest book, (and crying a little!). Ihave to say, this guest book idea is the most wonderful, encouraging, supportive bit ofinfo I have come across! I am 22 and I was diagnosed with vestibulitis about 2 months ago.I also have seen doctor after doctor, which have been NO help. I believe I have had thisdisorder my entire sexual life, although it has worsened greatly in the past year. I havenot taken any antibiotics, or have had any children, or yeast infections; and to this dayI have no clue to the cause. Although, reading the comments from Erica, I realized that wehave something in common. Depo-provera has been my birthcontrol choice from the beginning,(off and on), but in the last 2 years: on. Do you think this could be a possible cause?Has any one else used depo previous to VV or vestibulitis? Also, to Mary: I trulyunderstand your situation with your Fiance. I have been engaged for about 4 months, I'vebeen with my Fiance for 2 years, and I think your story sounds just like mine! Have youhad any luck getting him to understand it better? We've talked about breaking up, onlybecause of this!!! Thank you all for your comments! Best of luck to you and I! P.S. I am using a friends computer, so I do not have an Email at this time. I willcheck up on the guestbook frequently if any one would like to respond to me. --Thanx!
Commentdear friends.....flax juice may not be the cure...but it will lessen the symptoms in anatural way find the recipe at www.natan.net/flax.htm
CommentI have been dealing with vulvodynia for about a year now. I was very lucky that I wassent to the University of MI. for treatment. There I entered a clinic that treats onlythis problem. I am not not pain free, 100% of the time and I still suffer from a lot ofdepression about this problem. I am taking Elavil an d I have had some success. It is notan overnight cure and the 6-8 weeks is not long enough to really see what happens. I haveexperienced weight but if I could get bettter and stay better, I would never complain. Ihave found so much comfort in my relationship with God and that I know that all thingshappened for some reason, even if that reason is hard to see. so please ladies, keep goingand keep making yourself known because that is the only way we will ever find a cure forthis awful diease. I pray for a cure everyday and I know that it will come.
CommentI have suffered from VV for a few years now. I would experience vaginal tearing andburning with penetration only. I am now working with a Nurse Practitioner in Dallas, TXwho is beginning to help VV patients. I have had 3 appointments with her and I am painfree! She taught me pelvic floor exercises (Biofeedback). I believe that has made all thedifference. The exercises are easy to learn and easy to do. They are basically Kegelexercises. You can do them anytime, anywhere. I have also been taking Anaprox (ananti-inflammatory) and Flexeril (a skeletal muscle relaxant), calcium citrate, and Elavil.I am now stopping the medication to see if only doing to exercises keeps me pain free. Ican't tell you how excited my husband and I are that we are once again enjoyingintercourse. I encourage all of you to try biofeedback. If your OBGYN doesn't have theequipment or knowledge, maybe he/she can refer you to someone who does. Stay optimisticand good luck!
CommentHas anyone here ever experienced sharp almost thorny like pokes in the vestibule ? Isthis a common symptom of vulvodynia or something else? Please respond as I am feelinganxious over this. Thank you.
CommentDr.Glazer,I posted a message about a chat forum on here so we ladies could meet up tochat about our condition since we cannot get the chat room to work here..but you removedmy message.. was I not supposed to post a message like that? I'm sorry if I was notsupposed to-just thought it would be great if we could have a support chat group..we havetried and tried to get the chat forum on this site to operate but can't. Again I apologizefor doing anything wrong..thought it was a good idea at the time.
CommentI discovered something interesting that I wanted to share with everyone in hopes that Imight be able to help at least one person. For the last 7 years of my marriage I sufferedterribly from vaginal pain. After having some very bad yeast infections early on in mymarriage, my vaginal skin would become terribly irritated and red and develop cracks thatsometimes bled. These bleeding cracks sometimes spread all the way to my rectum. I wasmiserable. My marriage was suffering, sex was horrible and I was at my wits end until Ifound this website. Some of the things the women described were exactly what I wasexperiencing (i.e., vaginal burning, bleeding, painful sex, etc.). I subscribed to thelist and started receiving e-mails from everyone about their experiences. I think it'simportant to say that I have never been officially diagnosed with vulvodynia by a doctor.I have only self-diagnosed myself based on what other women reported. No doctor I haveever been to has been able to help me, and I've been to a lot. Every time I went to one tocomplain, they said they saw nothing wrong with me. I had test after test ran on me andthey would all come back negative. I finally gave up. Well, here's what I discovered allon my own. I'm very lucky that my cure turned out to be the simplest of things. I thinkmost of us are so sure that something is terribly, terribly wrong with us that we overlookthe simplest of things. I have been pain free - bleeding cracks and all, for over a yearnow all because I simply quit using soap in my vaginal area. Everytime I would bathe withsoap I would burn like crazy. I always thought that it was the contact of the soap with myopen bleeding cracks that was causing the burning, and it was, but it never dawned on methe reason I had the open bleeding cracks in the first place was because of the soap. So,I would just keep on washing with the soap and keep right on suffering through it. Well,one day while in the shower, I decided to try my 2 year old sons Johnson & Johnson'sBaby Bath for Sensitive Skin. BAM!!!!! Guess what? It didn't burn me when I bathed. I usedit again the next day - same result. After one week, my cracks were healed up and Isuffered no more. Just like that! I couldn't believe that the solution to my problem couldbe so simple and right in front of my own eyes. I couldn't believe that I had neverthought of this before. In fact, my doctor is the one who told me to use only Ivory soapbecuase it was the most gentle. Well guess what? It made my life a living hell!!!!! Idon't use anything other than the baby bath now. My problem is completely gone. I cannottell you what a difference it has made in my life. It makes no sense to me because all mylife I have used regular Ivory soap to bathe with and have never had a problem. Why all ofa sudden after having some yeast infections I would develop an allergic reaction to soapis beyond me. It never occured to me that I could have possibly developed an allergicreaction to something as simple as soap. Sex is wonderful, my marriage is back on trackand we're talking about having another baby. I find it amazing that none of the doctors Iwent to were able to recognize an allergic to soap or even suggest it. I went throughyears of hell being depressed and wondering if I had to live the rest of my life likethat. Now, I realize that this simple solution may not be a cure for everyone, but if Ican help just one person by telling my story - I'm happy to do it. I don't wish tominimize anyone's pain because I sympathize with everyone here. I just know that our painvaries from minimal to extremely painful and perhaps my story can help someone. I wish youall well. If anyone would like to e-mail me personally with questions, please feel free.I'm at mhansen@slk-law.com. Thank you.
CommentHi. I'm a vvs sufferer from Melbourne. I've tried gynos, naturopaths, feldenkreisphysios, massage, and am now trying a Chinese-medicine gyno, with mixed results. Hasanyone from Melbourne got any other leads? Gynos I've seen tend to put down the concept of womens' support groups (one said"they sit around and winge"). I think the ability to share our experiences,disappointments and breakthroughs is of fantastic benefit. I'd love to start a Melbournecoffee group. I've had 4 years of feeling sore and hopeful - now it's time to make the most of lifeas it is.
CommentI am so thankful for this site. I have been suffering for two years now and it came onvery suddenly after a 24 hour flu. I thought I had a bladder infection. Have been to 9doctors and so far nothing has worked. I'm scheduled for a colposcopy but is thisnecessary as I have had a biopsy already. Does anyone out there know of a biofeedbackspecialist in the San Francisco or East Bay (Oakland, Hayward, Fremont etc.) area ofCalifornia? Please let me know. Yes, we need to all stick together and get more researchdone on this. My husband is wonderful, but I have a 35 year old daughter who thinks it'sall in my head. Have not been able to work and the depression does get to you. Doctorswill not give you pain pills. Right now I don't care if it only masks the symptons asnothing else is helping, but can't get any help there. If you have lower back pain thereseems to be no problem getting pain pills but not for this...I don't get it. It forces youto lie, which I haven't stooped to yet. Let's keep talking. Susan
CommentI just posted a few minutes ago but forgot to ask a question. I am 55 and dye my hair.Does anyone know if dye could cause any of these problems...burning and itching. I know itcan go into your bloodstream, but could it be a factor in this condition?
CommentHi all..heres hoping for pain free days to each of us.I wanted to let you know of asite for support I found.Would encourage any and all to visit there.Web address is
CommentI have been suffering from this disese for 12 months now and I am still fighting it. Iwas just told about this site and hope to learn about this problem more and sometreatments. It is a very frustrating problem and it's hard to deal with sometimes.
CommentI wanted to write and give everyone a little hope. I had a baby girl in April '98. Thatis when my problems started. My baby was only 6 lbs 12 1/2 oz and I had only a small tear. When my husband and I tried to have intercourse at the 6 wk mark, it was extremelypainful. I thought that I had just not healed properly. However, even 6 months later, thepain was just as horrible. It took a while to get a diagnosis of vestibulitis. Several doctors, and specialistswere seen prior to actually getting diagnosed. This has been going on for 16 months. I have tried several things, antibiotics,estrogen cream and anti-depressants. I still take the anti-depressants for sanity reasonshowever, I am on a lower dosage at this point. We finally had intercourse the other day nearly pain-free. I still use the lydacane(spelling?) cream for a numbing effect but am going to try to wean off of it slowly. I feel so happy--like a weight has been lifted off of my shoulders. I hope thateveryone can find a cure like this or similar to this. I hope that this email giveseveryone a small ray of hope. I am praying for you all! On June 24 of this year, I was given the same operation that was shown on The BodyHuman:2000 on CBS. I still have some pain when my husband and I have intercourse, but itseems that as I heal more, the pain is much less. The pain is extremely less than prior tosurgery. I feel like a different person. I once again feel like there is a cure for thishorrible disease.
CommentRe:Leisha, please don't call an operation that is not known for having a very highsuccess rate a "cure" for this condition. As it gives false hope to others.Youare fortunate it seemes to have helped you,but I doubt it should be considered a cure. Andany operation carries risks.I've talked to many many women who endured the"operation" and it was not successful.The medical community should be encouragedto keep looking for other solutions to this problem and not resort to carving on uswomen.As has been stated by various women on here-if this were a problem affecting MEN'sprivates-there would be a mad dash for a CURE and I'm sure surgery on MEN would not be theoption of choice.Ladies-let us not give up in Demanding we be treated with the respect wedeserve and allow the medical profession to use operations (like the have done for yearswith hysterectomies and tubal ligations) as the ONLY course of action to help us.
CommentI'm considering acupuncture for my vulvodynia/vulvar vestibulitis. If acupuncture hasbeen successful for you, would you please email me or leave comments in the guestbookabout your experience? I have pelvic floor tension, tight fascia in the pelvic/sacralarea, tightness and irritation at vestibule, dry and tight skin in folds of labia. Thankyou.
CommentI've been recently treated for chronic yeast infections and vulvadynia. I'm currentlytaking amitriptyline, zoloft, provera and most recently added sporanex. My clitoris isvery swollen and sore. I have bouts of itching that are horrible. I was also prescribedboric acid suppositories which will cost me $70. I've spent so much money on medications.I'm also currently on a low oxylate, virtually sugar free and wheat and yeast free diet.Is my doctor diagnosing me correctly? Should I be taking these medications? Help!!
CommentI think the current guestbook is full. How do we start another one? Thank you again somuch for this site.
CommentHi! I just found this site, and it brings me comfort to know that I am not the only onesuffering from Vulvodynia. Sometimes I feel like I am the only one in the world who issuffering and in pain. I am a professional woman trying to cope with career and marriage.I want to know if anyone has been diagnosed with Intertial Cystitis (bladder disease),Doctors have told me that is why I have vulvodynia, apparently they seem to think that oneis related to the other. Any thoughts??? What is this low oxylate diet? Someone please letme know. Does anyone have any tips on making intercourse more comfortable -- I am so tiredand depressed that I can't be the kind of wife and want to be to my husband. I hope andpray that some day all of us can live normal lives. Thanks!
CommentThank goodness for this web sight. I never knew there were other people out there likeme. I'm 22 years old and have been suffering from vulvodynia for about 1 1/2 years. I wasdiagnosed about 6 months ago and haven't really learned much about it until now. My doctorhas not been very informative. When I first starting having problems, doctors keptthinking I had an STD. I was so scared that i had contracted something from someone...butI had always been so careful. When all the tests kept coming back negative, I finally wassent to a specialist. I was beginning to think that it was emotional and it was all in myhead. Some people thought that maybe my body chemistry wasn't compatible with my boyfriendat that time (we've broken up since then mainly because of "initmacy"issues...after 2 years). I've been getting yeast infections since I was 15, but in thepast two years I've had at least 1 every 1-2 months. I also had a constant urinary tractinfection....and then I passed two kidney stones. But what I'm finally beginning torealize is that they're all connected. I was told to have a low oxalate diet because ofthe stones, but I didn't realize that it could help me with the vulvodynia as well. Whatalso seems to help is drinking ALOT of water. I'm using some creams and some medicines,but nothing makes me feel 100%. Some days I look red...some days purple and swollen andsome days I'm just slightly red. But everyday is different. I feel as if my sexuality andfemininity have been taken from me. Why are we the ones that have to suffer with thisdisease? What did we do to deserve this? I don't want to start a relationship with anyonebecause I'm afraid to get to the point where we are ready to make love....and it will beextremely painful and I'll be starting all over again. I don't know if I could takeanother relationship like that. How do your husbands and boyfriends and fiances deal withthis problem? Are there decent men out there that don't care about sexual relations?Please someone respond to me.
CommentThis is in regards to using the word "cure"...obviously, what"cures" one person may not work for another, but I don't think it's a reasonthat person for whom it worked, can't call it her cure. I had vestibulitis for almost 3years, and had a vestibulectomy in May '99. I had tried warm baths and Temovate, had triedinterferon injections. But the surgery worked for me, it was my cure. I have no pain atall, and my husband and I have successfully gone back to having a love life that feelscomplete. I would be happy to talk to anyone who would like to hear more about myexperiences. I understand what you're saying when you don't want to call surgery acure-all, but remember for some people it *does* work. As for me, I was at the end of myrope, there was very little else to try. Good luck to everyone...
CommentI was very sick for 3 years following an abscessed tooth and then root canal. Fromreading the symptoms of vulvodynia and also I believe the last gynecologist that I went tocalled my condition by this name, I had vulvodynia. I was very healthy, hardly ever wentto the doctor before this. I always associated my poor health to the root canal. Afterhaving the root canal pulled the symptoms went away over a period of months. If you wouldlike to talk further, please feel free to send me an e-mail.
CommentI am also glad I found this site. I have been suffering for the last 11 years withreoccuring bladder infections and yeast infections. One doctor told me it was because ofthe birth control pills I took. Because I had an infection about every month . So afterthe birth of my last child I got my tubes tied and went off the pill, thinking that thiswould cure the problem with the yeast infections and the pain. But it didn't. The onlything I notice was I didn't have the cottage cheese like discharge anymore. But I stillhave the itchy and burning sensation in my vaginal area. I also experience pain duringintercoarse about 90% of the time. I use to think it was just me. But I read an article inour local newspaper that described a number of things I have been experiencing for thelast 11 years. I couldn't believe it. I showed the article to my husband who agreed thatthis is probably my problem. I too went into the www.ppodsyndrome.com and I took thequestionaire and I couldn't believe that it said I probably did have this problem. I wouldlike to learn more about this disorder. I also have complained to my doctor about the painI experience and they tell me nothing is wrong or I just have a urinary infection. I wishmore doctors knew about this disorder so that maybe more women could at least be diagnosedproperly instead of being told nothing is wrong so we feel like its just us. That it isonly in our heads. The pains are real so give us a break.
CommentI'm writing in response to chrissches@aol.com, who wanted to know about tearing in thegenital area. I'm now 26, and I was experiencing tearing, as well as burning, itching,etc., for about a year. It began (as seems typical) after a series of bad yeastinfections--the yeast went away, but the symptoms didn't. My college doctor tested me foreverything, prescribed a lot of topical steroids (which only made it worse) and finallytold me it was something I would just have to live with. NEVER believe someone who tellsyou that--or who tries to make you think it's all in your mind! I switched doctors, andfound one I'm really happy with. She blamed the tearing on my skin having been weakened byall the topical steroids, and put me on an internal estrogen cream every day for twoweeks, and weekly thereafter, to help strenthen the skin. The tearing has stopped!! Shealso said I had an unusually high vaginal ph, and advised me to go off the birth controlpill, because it can raise ph. In addition, she told me to start takingAcidophilis--basically, the same bacteria that's in yoghurt, but now I get it at thehealth food store and take it in capsules. Unfortunately, I still have the burning. It'sbetter overall, but it gets markedly worse the week before my period, when my doctor saysthat ph is naturally higher. The next step is to try a low-dose anti-depressant, on thetheory that my nerves just got accustomed to the pain during all those yeast infectionsand are still mis-firing. (The doctor put it better). She says she's not ready to diagnoseme with vulvodynia yet, or to conclude that it's a chronic condition--so I hope she'sright! Good luck to everyone!
CommentRe:Erica's response to someone else saying surgery is not a "cure". I happento agree that surgery should not be called a cure till until it can be proven that it willbe 100% effective.READ the stories on here ladies..have you Not read about the trauma anddisappointment some of these women have gone through who have allowed themselves to usesurgery as a last resort????? I say we ned to ban together and demand the AMA treat thiscondition in a more serious manner and stop experimenting on us as though we are lab rats.IF and I stress IF surgery has been a totally 100% cure for some of you-then I applaud you& your doctor.But let's face facts-we know from the messages left here that surgeryhas proven to be more of a failure than a success story.I just don't happen to think weshould be encouraging women to use surgery at this point.
CommentI left my comments about 9 months ago, and then felt I really didn't have VV, so Istopped writing and reading. I just didn't want to face it. I was given the wrongdiagnosis as many of us are and it just prolonged the agony. Steriods must be the worstthing you can put on an already burning and itchy vagina!!! It took almost 5 months towean myself off the steroids with the help of a wonderful dermatologist. I have been to aurologist so many times I lost count. I kept getting told I had no infections. Well Ididn't most of the time but sometimes I did. I landed in the hospital last May with asevere kidney infection. I think all this started last Sept. when I had ecoli in mybladder and then in my vagina. It went back and forth for 3 months and I was on heavyantibiotics. When I finally got that under control I had VV. Of course I didn't know itnor did my doctor. I have since found a very kind doctor that says it can go away justlike it came. For no reason. He told me to try all the different things out there that we have all tried and goodluck. He said if it gets really bad we can try the antidepressants but he doesn't want todo the surgery. He feels it is to risky, as with any surgery you get scar tissue and addthat to the other problem I may be worse off. I have found that I can intercourse if weare very careful about three days after my period, for about a two week period but onlymaybe every other day and very slowly. I use unscented toilet paper and unscented soap. Itake sitz baths in baking soda when I feel really uncomfortable, and that at least takesthe sting away for awhile. Sex is not like it use to be but for our marriage we both knowthat we love each other for better or worse and we need to stay together. No, sex is noteverything but it is important. I have learned that if you really love each other thereare other ways to love. We take baths together and give each other facials and wash eachothers hair. We hold each other close at night and we care about each other. Somethingcould happen to him that he may not be able to make love to me and I know I would staywith him. You can't leave someone because they aren't perfect. Oh one other thing that really helps me is I have found all cotton tampons and I use alubricant to place them and I push the string up in my vagina so it doesn't rub on myvulva and make it sore. If I do get really sore and the sun is shining and not to cold outI sit with my legs apart and get some sun. That was my husbands idea and it worked. Thiswinter I think I am going to get a heat lamp and if I get sore try it a few times. I alsotake bactrim twice a day and that is the only thing that keeps the bladder infections awayand keeps me from having frequency and burning. I pray it goes away but till then and fornow I have to be positive because negative just hurts to much. If anyone needs a friend Iwill try to be there. Write to me whenever you want. I hope some of my tricks help someoneelse. Try everything one at a time and maybe something will work. Oh I also have a verysore rectum and I use A&D ointment on that area but I try to keep all that stuff offmy vaginal area. We use a lubricant called Slippery Stuff it isn't sticky like KY jellyand it doesn't seem to irritate me. Good luck to us all and god bless. Oh I also haveGraves Disease but it is under control. I had the radioactive iodine treatment last Julyand I am on thyroid replacment and feeling better about that each day. Best to us all, Lyn j
CommentI made a post to this book yesterday. It may have sounded too good to be true. I haveread many of the posts in the guestbooks and I truly can sympathize with those with thisproblem. It is hard to read what others have written, and it is impossible to read withoutbeing reminded of what I once lived with for 3 years. I really do want to help others.Vulvodynia may be caused by different things, and I'm not saying that what helped me wouldbe a cure for everyone. This problem just about drove me out of my mind. I knew if I evergot better that I wanted to help others. It is something I never will forget and hope thatI never have to live with again. Melanie
CommentAfter reading the guestbook and shedding a few tears, I decided to write about my ownexperience. I'm hoping to reach out to other VV sufferes so that they can help mecope,treat and try to understand this disease. I'm 22-year-old student who has sufferedwith VV for over two years. It might not seem long to most but for me these two years haveseemed like an internity. Like evey othe VV sufferer I've have never felt so confused,frustrated and helpless in my entire life. My boyfriend has been incredibly supportive andpatient. We have been dating for over three years and our first year of our relationshipwe wad frequent intercourse. I come from a small town therefore I have not found a doctorwho is familiar with my diseease. My doctors have given me topical creams and insured methat it would probably go away. It has only gotten worse. I began to experience terriblepain during intercourse after I had received laser surgery for the removal of genitalwarts. The whole process was painful and embarasing. I am convinced that the lazersuregery somehow triggered my nerve ending to become extremely sensitive therefore makingintercourse extremely painful. My boyfriend and I live apart because of our studies, I amalso reminded of my disease when he comes to visit. I feel as though I am an inedaquategirlfriend and I am terrified about my future as a wife and caregiver. We are hoping tohave children in the future but I'm scared about my chances of becoming pregnant andproper delivery. Because I am a student my finances are tight, I am unable to visitmedical professionals in the States. I am currently living in Calgary, Alberta and ifanyone knows of a doctor familiar with the disease PLEASE let me know!!! I would also liketo receive any tips from other VV sufferers. Your stories have inspired me and given mehope that we all can cope with this disease while leaving a healthy life. good luck toeveryone my heart felt thoughts and prayers go out to every VV sufferer.
CommentHi everyone. What a relief to find a resource like this! I have been feeling sodepressed and alone. I am 27, and just been diagnosed VVS FINALLY after 6 years of beingbrushed off by doctors, and refered on or told it was in my head. My bf/fiance of 7 yearsis struggling to work out if he can "Put up with being a sexual matyr" forlife...I feel soo alone...Any ideas, suggestions, similar tales???
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CommentI have written in the guestbook before and would like to let anyone interested knowabout a procedure I had that, with Elavil, has taken away about 90% of my pain. It iscalled vaginal fulgeration. It sounds bad at first but keep in mind that you will be outfor the procedure. It supports the theory that of course the nerves in the area arehurting constantly for some reason that for most of us is only guessed about. It involvesan electric needle that is used directly on the affected nerves. It basically burns thenerves and therefore they are no longer there to cause the pain. Before my surgery I hadabout 12-14 of these trigger points and after having it done twice, I now seem to onlyhave about 2. Believe me, it was worth the discomfort afterwards to be able to have apretty normal sex life with my husband again after two years of none at all. I also am onElavil which has helped to rid me of most of the rest of the pain. I no longer hurt whilesitting or walking everyday. I still have a couple of uncomfortable days a month, but itis so much better than hurting everyday. If anyone is interested in my surgery, juste-mail me and I'll try to answer any questions I can. I want to add that this is notanything like the laser surgery offered to us at all. I refuse to have someone cut piecesout of me and make me even worse with the scar tissue. That is why I consented to thefulgeration. It deals with areas too small for just the human eye to see without help andtherefore does not cause large areas of scar tissue. I have recently moved, and my currentdoctor who didn't do the procedure agrees that it has helped me considerably. He said thatit is almost like having plastic surgery on the area. Good luck to all of you. Vulvodyniais something that the world needs to acknowledge and do research to find the cause and acure. At least we have each other to talk to and maybe someday we will be able to helpmore doctors realize that this is a real problem and not something just in our heads.
CommentThere have been a few comments made as to whether or not people should call theirsuccess stories "cures". I don't care to get into that argument but what worriesme is that women out there may shy away from sharing their success stories (or"cures" as they may wish to call them). PLEASE DON'T! I don't think I would beable to stay positive if it weren't for your encouraging comments. I WANT to hear aboutyour cures. I realize that what works for you may not work for others but I'll never knowwhat my options are unless I hear them from you. I have already found some success withthe comments made. I used that Johnson & Johnsons baby bath for sensitive skin afterexperiencing severe burning with the hypoallergenic soap I was told to use, and I feelmuch better. I also read that some women have experienced recurring/chronic yeastinfections. I found that I experience 50% less pain after taking gynelotrimin yeastinfection suppositories about 1/month. This leads me to believe I also have recurringyeast infections. Until I find a doctor knowledgeable about this disease, your commentsare all I have. Thank you all for making me feel normal and not so alone. I appreciate everything youhave to say so please, if you have found a cure for you, it may be helpful to someoneelse. Reading your success stories is what gives me hope that I too will some day find acure for me. Best of luck to you all and please don't give up hope. As long as we continuesupporting each other we'll get through this. Ann
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CommentSince I made the first post a few days ago, I have received an e-mail from a lady whobegan experiencing vulvar pain the same week she had a root canal. If you have a rootcanal or if your pain began around the time of a root canal, please contact me. I would beinterested in knowing just how many women who suffer from vulvodynia have root canals. Toread more about my story, you can visit: http://members.tnns.net/kyarbrough/rootcanals.htmor http://www.com-prod.com/kyarbrough/rootcanals.htm Melanie
CommentFirst I would like to thank everyone for sharing their stories with everyone. Aboutfour years ago I too began having problems with pain in the vulvar area, burning, redness,swelling, ect. I'm 21 years old and just recently married. The pain has prevented us fromany kind of intimacy and too make a long story short it has effected our relationship. Ihave seen numerous doctors over the past few years. They of course do hundreds of dollarsworth of tests that reveal nothing other than an occasional yeast infection. In March Iwent back to my regular physician and he had this brilliant idea that "if you justwant the pain to go away bad enough it will." He sent me home with this thought andKegal exercise and a $200 bill. Neither the thought or the Kegals helped by the way. So myhusband and I started looking for answers on the internet hoping to find something thatwill help us. We found that washing my undergarments alone, once with soap and oncewithout helped with some of the irritation. I also rinse myself with a bottle of luke warmwater each time I use the restroom and then apply Vitamin E oil. This is a very cheep wayto cut out the irritation. ( the bottle was purchased at Wal-Mart in the travel soapsection for around a dollar) Just yesterday I saw another physician hoping for moreanswers he has placed me on Hydrocort 2.5% in Eucerin Cream. (If anyone has taken this youexperience would be appreciated.) The new physician seems to be really good. He actuallylistened and didn't just say it's all in your head. Instead he ran a couple of tests andput me on this cream. If anyone has any sugestions or just wants to talk I would be happyto help in any way I can. Sincerely, Monica
CommentI posted in the guestbook that I had a surgery that has been quite effective in helpingme with this problem. Maybe for some of you I used the wrong word which is"cure". I do not feel that this surgery is for everyone and have even read thatthere are people out there that has had the surgery but no success. I will change my word of "cure" to "success for me" if that helpsanyone. There is no true cure out there as of yet. Yes, I feel that there should besomeone out there trying to locate this miracle cure. I hope that for all of the women outthere that it will be soon. It breaks my heart to hear all of these stories. However, I did want to give some sort of hope to the women that suffer from thishorrible disease. I pray that there is a cure found that will help everyone.
CommentI had written last week about the use of the word "cure", and now I amresponding to Ann's wanting to hear more success stories. When I was trying to decidewhether to have surgery or not, first I read this guestbook to see if there was anythingelse I could try first. I wanted to see what other people were doing. I found many morenegative stories here than positive. Once I decided to have the surgery, I found that Icouldn't read the guestbook anymore; I didn't want to hear about how surgery did NOT workfor people, I needed to focus on my own recovery. I am glad to hear that some of youappreciate hearing the success stories as well as sharing the painful, frustratingstories. I think it's important for all of us to be supportive, and appreciate thesharing, whether it's good or bad. I feel very fortunate that surgery worked for me, and Iam glad that there have been a couple of people who have emailed me and said I have helpedthem by sharing my experiences.
CommentThank you Dr. Glazer for this website. I'm 39 years old, history of bladder infections,tetricylene for 2 years, yeast infection, interstycial cystitis (undiagnosed for 1 year -"in my mind") then VV hit 8 months ago with the horrors that you all haveexperienced. Finally found wonderful Dr. Leslie Sadownik in Vancouver, BC, Canada. Havingsome success with amitriptiline and the IC diet (no acids). Down to approx 2-3 from highof 10. She recommends physio/biofeedback treatments but I can't find anyone so far in myhome town. The depression and fear of sexual pain is so wearing on my spirit and marriage.I'm willing to share my IC information regarding treatments, diet etc. and know I'll learnalot from you all about how to fight VV. Thank you for sharing your knowledge. Informationis power and we WILL beat this.
CommentHi. I am searching for some help for a friend of mine. She has been suffering for morethan 15 years from what is now thought to be vulvodynia. She has seen doctor after doctorand has had some temporary relief, but she is still suffering a great deal. She is nowextremely depressed, and this is greatly effecting her normal day to day life. I now fearfor possibly her life if she doesn't get some relief, she just can't take it anymore.Please, if you have any suggestions, email me at ricknhelen@kih.net . Thank you thank youso much. Helen
CommentI live in Dallas, TX and typed an entry on 9-13-99. I submitted the wrong e-mailaddress by accident and I wanted to correct the mistake.
CommentI haven't been diagnosed with vulvodynia, but I assume that's what I have. I hadrecurring yeast infections since February. At first, the meds that the doctor prescribed,helped and the infection was gone. However, it returned after a few weeks. I made themistake of trying to continue with the cream the doc had given me. This didn't seem tohelp. When I saw the doc again he prescribed more of the same. This did not have an effecteither. I continued to have moderate to severe pain all the time and was unable to sit forlong or wear tight trousers. When I went to see the doc again in August, he said there'sno yeast. A culture he took, also turned out ok. He said there's only a localinflammation, gave me an anti-inflammation cream, and told me not to return again untilnext February. Needless to say, the cream did not help, and the pain and burning are stillthere. Since I knew that's something's wrong, I started searching through the Web, andfound this site. The info in this site and the posts are very encouraging. I've found alisting of a PT in my area who does biofeedback and myofascial release and I'm going toget in touch with her next week. I'd like to hear from women who've undergone thistreatment or are undergoing PT now. Best of luck to everyone.
CommentLadies, I too suffer from VV, but I do not believe that I have as a severe case as someof you. I have found some success with taking calcuim citrate to combat some of the pain.For anyone that has not heard how calcuim citrate works, this is what I understand fromwhat I've read and from what one doctor has told me. Calcuim oxalate is found in manyfoods we eat, chocolate, nuts, spinach, rhubarb, strawberries, etc. Calcuim oxalate is thesame constituent that causes kidney stones. Calcuim oxalate is concentrated in urine, thecrystals that it produces accumulate in the vulva area and produce the pins and needlesfeeling that we feel. Taking calcuim citrate, Citracal, produces a chemical reaction thatbreaks up the calcuim oxalate in your system, therefore not allowing the crystals to form.I believe that it's worth trying for everyone. I started off taking 8 tablets, 1600ml aday for several weeks and watched what I ate (still do). I still take 2-3 tablets a day.It has helped me a lot my pain is not severe as it once was. It's cheap, it's worth a try. Questions I have for you: 1. For those who have tried the Glazer Protocol, is it worth it? Please email me, I'dlike to try it. I live in Northern Virginia. 2. Does anyone have a problem with low white blood cells?
CommentI was diagnosed with this condition several months ago. A year and a half ago I noticedtremendous pain trying to have intercourse during my third month of pregnancy. There wasminimal pain for several months before, and now the pain seems to have increased. It isnot a constant pain, but occurs only with pressure and has recently started burning anditching. I just realized how serious this condition is by looking at this website. I kepttelling myself that we hadn't found the cure just yet but we would and that this wouldn'tbe a long term problem. Well now I am very discouraged. One year ago I never knew thatthis existed. I am relieved to find this site and to find that I am not alone. I amcurrently in the process of weaning my baby so we can start to fight this full force. Mycondition seems relatively minor compared to others of you (with whom I sympathize). Istarted to try the estrogen cream but got scared to continue to do so after looking atthis site. I was inserting it into my vagina and now wonder it that could have futurereprecutions. If anyone has personal experiences with estrogen I would love to hear them.
CommentI haven't been diagnosed yet, but my symptoms seem fairly consistent with all of yours.My heart goes out to those who speak of suffering with VV for years--it's been 6 monthsfor me, and I'm already to the point where I don't want to live any more if it's alwaysgoing to be like this. I'm not a wussy--I've had bad irritable bowel syndrome and lichenplanus for 14 years. (Took 8 years to convince a dr. that it wasn't all in my head and doa biopsy for the lichen.) Used high-potency steroid creams for 3 years, and the horribleitching went away. Then, six months ago, got symptoms of perimenopause and a bladderinfection all at once. I kept telling them that, besides urgency, the pain was "onthe outside." Urine test came back "borderline," but they put me on Cipro,which gave me horrible vag and rectal yeast, but didn't clear up the "bladderinfection." Took Diflucan for the yeast. Then took two more courses of antibiotics,then Flagyl and Flagyl gel. Thing got worse. Was also started on HRT because estrogenlevel was nearly nonexistent. Right now I've been taking Macrodantin antibiotics for the 4weeks straight. Vulvar pain has become intense and constant. The area is dry, red andcracked open, with a few small sores that don't heal. Can't stand to sit, walk or wearunderwear. Dr. acknowledged that I look "horribly red," and prescribed topicalestrogen cream and Terrazol. Both burn like salt rubbed into a wound. I don't have healthinsurance, and I'm spending hundreds of dollars and just getting worse. What a nightmare.
CommentI wrote a message on 9/28/99 and put in the wrong e-mail address. I just wanted to leteveryone know the correct one. Thanks
CommentI was wanting to join the mailing list, but the I keep getting sent to a page that saythis page is not available??? Also has anyone been put on steriods? If so please let meknow what effect they had on you.
CommentI'm glad to know that I'm not the only one and that it's not all in my head fortunetlyI have good doctors. this is an excellent web site and I will be checking in frequently.thank you
CommentI've been dealing with vulvodynia for approximately two years now. Fortunately, I havea very understanding and sympathetic husband. I've been reading over some of thesecomments and I've seen many women commenting on the infamous High Oxilate Diet. In theAugust issue of a magazine my gyno gave me it was said that it has been discovered thatthe diet has proven to be ineffective. I know this little tid bit won't do anything tohelp the pain, but at least knowing this you can eat your favorites again. Food is thenext best thing to sex anyway!
CommentDoes anyone else suffer from symptoms that go away upon lying down? I suffer fromsevere pelvic and vulvar varicosities and have tremendous vulvar pressure and pain. Thispain is relieved by lying down. After a partial vulvectomy, I developed excruciatingvestibulitis-like symptoms. The rawness and burning were eliminated with monthly Luproninjections. I have residual pressure and pain from pelvic congestion syndrome that we justcan't seem to cure. Since the Lupron has been so beneficial, and since hysterectomy isoften a cure for pelvic congestion, I am having a hysterectomy next month. It may, or maynot, cure the pain caused by dilated vessels. I would love to hear from anyone sufferingwith pelvic congestion or vulvar symptoms that are relieved by lying down. To those of yousuffering with rawness, burning etc., my heart goes out to you...the rawness was pushingme over the edge. Please ask your doctors about a trial of Lupron. Estrogen is not myfriend! I will be thrilled to get rid of my ovaries!
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CommentI have severe vulvodynia. I was 17 when I first started having problems & I wastold by a doctor that I had herpes. She did no tests, just listened to my symptoms, took alook, and gave me her diagnosis. For years, I assumed that was my problem, but wonderedwhy it was constant and why my boyfriend, now husband, never had any symptoms - especiallywhen he's the one I contracted it from. After reading through the guestbook, I've seenthat many of you have been tested for STDs which came up negative. Now I'm confused. Was Idiagnosed wrong, or is that what triggered my vulvodynia? Anyone in a similar situation? Iwould appreciate any responses to this situation through this guestbook. Thanks.
CommentJust wanted to say that I am concerned with Michelle's entry of October 4/99 commentingon the low oxalate diet. The low oxalate diet combined with calcium citrate has given lifeback to hundreds of women. My level of pain increases drastically if I eat somethingcontaining oxalate. Some women on the diet have become completely pain-free, and we shouldnot diminish their success on the diet.
CommentJust wanted to say that I am concerned with Michelle's entry of October 4/99 commentingon the low oxalate diet. The low oxalate diet combined with calcium citrate has given lifeback to hundreds of women. My level of pain increases drastically if I eat somethingcontaining oxalate. Some women on the diet have become completely pain-free, and we shouldnot diminish their success on the diet.
CommentI've been diagnosed with VV, I've suffered for about a month now, can anyone tell me ifthey know of a specialist in the Chicagoland area that pracitices Dr. Glazer approaches.Also can someone suggest either a website or tell me what foods I should steer clear from.I keep hearing that I should stay away from high oxalate foods, I just don't know whatthat is. Please help!!! I would appreciate any assistance you can offer.
CommentI am in complete astoundment to see so many contributions. I am filled with so manyemotions I don't know where to begin. This has been a great place for women to tell theirstory and acknowledge their experience with support. I am 24 years old. I have had vulvarvestibulitis for 5 years. I was living in Malaysia for 5 months. While I was their Inoticed I was inflamed and had burning sensations. I came home to the U.S. and describedmy symptoms to my ob/gyn only to be dismissed and given treatment for a yeast infection. Iwent back four more times seeing different doctors each time. I was treated for bacterialinfections of the bladder and vagina. Nothing helped. I was frustrated, and not a singledoctor seemed to care. In total I have seen 12 different doctors, all with differentdiagnoses. The last two have been the most helpful. For the first time a doctor actuallysat down with me before the initial exam and talked to me. Even though I have had vulvarpain for 5 years I was finally diagnosed with vulvar vestibulitis a few months ago. I havetried many different diets, herbal supplements, vitamin/mineral supplements, acupuncture,various forms of massage and bodywork, as well as drug therapies from my doctor. Mysymptoms include fatigue, constipation, low back pain, nerve pain in legs, and pain withtouch and intercourse. Most successful treatments have been acupuncture in conjunctionwith yeast free diet, psycho-therapy, getting off the birth control pill and more recentlyrecieving craniosacral therapy, and visceral manipulation(externally and inter-vaginally).I have a very supportive partner but it has been a tremendous struggle. I think thetreatment for this can be highly individualized. I want to try biofeedback. Improvingone's overall health through a healthy diet of whole foods, inner work-mentally andemotionally, and working with doctors is essential. Most importantly though is having avoice!! Listening to everyone's story was phenomenal. More media coverage is neccessary. Imissed the CBS special, if anyone has a copy or info on how to get one please let me know.I think Oprah should do something. I saw her show on low labido in women and that was veryhelpful as well. I'm interested in starting a support group in my area of Michigan ifanyone has info on starting one or are living in Michigan, please fell free to email me.
CommentI suffer from lichen sclerosus and wanted to know if there are others out there whoalso have this terrible skin condition of the vulva. My condition has just spread from theclitorial area to the vestibule. ANY INFORMATION OUT THERE WOULD BE MUCH APPRECIATED!!!God bless you all. FYI - I have tried Glazer's biofeedback for my vulvodynia and have beenpain free for months now. I strongly believe in biofeedback and recommend you all to giveit a try!!!!!! YOU HAVE NOTHING TO LOSE!!!!! denise please email me atd_dichiara@hotmail.com
CommentI have been suffering from vulvodynia for only 6 months. I was referred to adermatologist. My dermatologist first prescribed and ointment, then a tricylicantidepressant (doxepin). As far as I can tell both of these are normal things toprescribe. But now she has me on Claritin (the allergy medicine). I haven't found thissuggested in any of the research I've done. Does anyone know of this or something similarbeing tried?
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Commenti was diagnosed in 1991 and sought out treatment all over the midwest. i am now prettymuch "cured" except for very rare flare-ups caused mostly by diet. i had laser,barts removed, low oxalate diet, and biofeedback. all of them together got me better! i donot believe one would have worked alone! i still follow diet and still use biofeedbackthat i was taught when needed. i was a pt of dr richard reid in detroit !! he was the onlyone who believed me! i try to keep up on the disease b/c i hope maybe i can help someoneor at least give them hope that they can get better!
CommentThis website is a blessing - I've received more info here than from many doctors. Whilescanning the stories I noticed one that said to stop using soap and switch to Johnson& Johnson Baby's Body Wash. I have been using it now for the past 3 days and my painhas been dramatically reduced. Give it a try - it can't hurt. STOP USING SOAP!! Thanks toall of you for sharing your stories.
CommentHello all, me again. If you haven't already found it - I have just discovered afabulous website. www.vulvarpainfoundation.org that has lots of great information. wishingyou all pain free days...
CommentSomeone was looking for a list of low oxalate foods. I found one at the followingwebsite: www.branwen.com/rowan/oxalates.htm hope this is helpful.
CommentThere has been alot of interest in my posting about the medication, Lupron. It took me8 months to realize my symptoms of rawness, burning, and swelling were present on days3-18 of my monthly cycle, with an excruciating peak in pain for 4 days around ovulation.This indicated there was a hormonal component to my problem. My doctor then turned myovaries off with an injection of Lupron. My rawness went away, only to return when he putme on estrogen replacement. I cannot tolerate estrogen...my own or man-made! As long as Idon't have estrogen in my system I am free of the rawness etc. It appears a hysterectomyis my cure. To those of you suffering, chart your pain/symptoms. A trial of Lupron justmay be beneficial. If nothing else, you won't have a period until the medication isdiscontinued.
CommentMARLENE, I GO TO A VERY COMPETENT DOCTOR IN CHICAGO. HE RUNS A VESTIBULITIS CLINIC FORNORTH WESTERN HOSPITAL. HIS NAME IS DR. LANE MERCER (312) 726-9338. DR. MERCER WAS THEFIRST DOCTOR TO NOT TELL ME THIS PAIN WAS IN MY HEAD. MY CONDITION WAS VERY STUBBORN ANDNOW IT IS GONE. gOOD LUCK AND E-MAIL ME IF YOU HAVE ANY QUESTIONS.
CommentMARLENE, MY A DOCTOR, DR LANE MERCER (312-726-9338) IS VERY COMPETENT. HE RUNS A VESTUBLITISCLINIC FOR NORTHWESTERN HOSP. GOOD LUCK.
CommentI've been suffering from vulvodynia for ten years! I can't believe it has been thatlong. I have tried everything from cordisone nose spray (in the vagina) to antidepressentsto low oxolate diets, you name it. About five years into it i noticed that the paindissapated by about 80%. The only thing i could attribute this miracle to was that I wentback to work full time (after being home for three years raising my twins). I enjoyedabout two years of lesser pain. Well now i am back to full blown agony. I just had mythird child and i am nursing. I only have pain at this point at intercourse, but it isliterally impossible to do it. I feel numb about the situation because i have been throughevery stage of this horrible affliction and now i feel as if i am back to square one. Whycan't they find a cure? I have seen so many doctors and everyone has their own opinionabout what to do. My doctor now wants to remove the vestibule glands because that is wherethe pain is located. Has anyone had success with this procedure? I am so afraid of makingthis worse because a few years ago i could'nt even wear underpants or sit without being inagony. At least now i can function and even wear jeans with out to much discomfort, I justcan't have sex. My husband is wonderful about everything, but i don't feel very good aboutmyself. If anyone knows anything about this vestibulectomy please contact me. It iscomforting to read everyones notes, but it makes me so sad that there does't seem to bemany answers for us. Thanks.
CommentI've been suffering from vulvodynia for ten years! I can't believe it has been thatlong. I have tried everything from cordisone nose spray (in the vagina) to antidepressentsto low oxolate diets, you name it. About five years into it i noticed that the paindissapated by about 80%. The only thing i could attribute this miracle to was that I wentback to work full time (after being home for three years raising my twins). I enjoyedabout two years of lesser pain. Well now i am back to full blown agony. I just had mythird child and i am nursing. I only have pain at this point at intercourse, but it isliterally impossible to do it. I feel numb about the situation because i have been throughevery stage of this horrible affliction and now i feel as if i am back to square one. Whycan't they find a cure? I have seen so many doctors and everyone has their own opinionabout what to do. My doctor now wants to remove the vestibule glands because that is wherethe pain is located. Has anyone had success with this procedure? I am so afraid of makingthis worse because a few years ago i could'nt even wear underpants or sit without being inagony. At least now i can function and even wear jeans with out to much discomfort, I justcan't have sex. My husband is wonderful about everything, but i don't feel very good aboutmyself. If anyone knows anything about this vestibulectomy please contact me. It iscomforting to read everyones notes, but it makes me so sad that there does't seem to bemany answers for us. Thanks.
CommentWow! I wish I'd known about this site years ago! I have been fighting with this for 10years, my entire sexual life. I, too, have had a difficult time obtaining correctdiagnoses and treatments. One source I have found helpful: A Woman's Guide to OvercomingSexual Fear and Pain by A.J. Goodwin and M. E. Agronin I found this on Amazon.com. What I still have not found is a knowledgable M.D. in the San Francisco Area. If anyonehas a recommendation, please let me know. (I'll check back here in a few days.) Thank you.
CommentHello, I'm 22 years old and I also suffer from this horrible condition. It started whenI wash with soap and then a got thrush from taking antibiotics. I was also at the sametime wearing thight cloths,jeans. i had this conditon in last 1 1/2 and i'm starting torealize that i have a long way to go to get rid of this constant pain and burning.Theworst is 1-2 weeks prior to my period and when I'm siting from longer time.I'm onanti-candida diet at the moment and i see how i go with that. I was on Diflucanol andTofanil ,that helped but when i stoped, everything came back. I would appreciate if anyone can give me any suggestions on successiful treatments.I would try anything(especiallyif you tryed new anti-depresants, acunpnture or surgery ) to get rid of pain and burning.MY main condition is reddness, burning and sometimes swelling. I've just started findingabout this conditions,if any one wants to talk about it please e-mail me All the best andnever give up hope!!!
Commentall the best
CommentThank you Colleen C. Do you know if Dr. Lane Mercer practices biofeedback? Please letme know...I appreciate the assistance.
CommentCan we PLEASE get a new guestbook. The current one is quite long. Thank you!
CommentIt seems finding a doctor that is knowledgeable about vulvodynia is very difficult. Hasanyone ever thought of compiling a list of doctors, that people have had positiveexperices with.
CommentIs there anyone reading this who lives in London and has any useful contacts? I've hadvestibulitis for 3 years, had various unsuccessful treatments and am currently trying tofind a counsellor for me and my partner to deal with the problems it has caused. I'm inWest London.
Commenthi, I`m a 23 year old from Northern Ireland, and about 2 years ago, I lost about 2stone and started wearing smaller, tighter clothes. 2 years on I havèn`t been able tohave sex, have had the worst burning and itching sensations ever and my doctors don`t havea clue what is wrong with me. I found this website by chance, and because I`m at my witsend.. I`ve had canesten cream, pessaries, antibiotics for bacterial infections, swabs andurine tests for diabetes, and yet more pessaries, which stung like hell, only for me to goback to my doctor last week, when she checked my cervix and vagina and told me there isnothing wrong with me!? I`m sick of being messed about, I`m only 23, and have no children,and haven`t had sex since I was 19..? There`s something seriously wrong here, which is whyI`m going to try the low oxolate diet myself, I`m determined to solve my own problem..anyone got any advice for me? by the way has anyone ever discovered a cream/yellowdischarge from their navel? I wondering if this is connected?
CommentI want to say thank you to all those who participated in my survey on the quality oflife of women with vulvodynia. I sincerely appreciate your candor and your input has beenmost valuable. The preliminary results show that vulvodynia has a major impact on thequality of life of those it affects. Once the report is finished, I will share the finalresults with you. Again, my sincere thanks.
CommentThanks to Dr. Glazer. He has saved my life! My original entry is in the 5th guest book dated 4/20/98. I have been a patient of Dr.Glazer for 16 months and following his protocol for biofeedback. I have improveddrastically and will never forget the chronic pain,itching and burning I experienced forthe 7 months preceding my initial consult with Dr. Glazer. I have gone from a"10" on the pain scale to a"1"! I have and will continue to bediligent with regards to exercising as prescribed. Biofeedback is the only way Iexperienced any pain relief at all.
CommentHello sisters with vv, I suffered with various symptoms of vv since I married in 1982, mostly constant burningjust in the entrance of the vagina. Went to at least 15 MDs and an assortment ofalternative healers. I am a licensed acupuncturist and MPH. After my divorce in 1993, all of my symptoms disappeared and lots of sex with a newlover didn't make them recur. I had tried almost everything mentioned in the guestbooksexcept the oxalate diet and surgery. At the end I was using a combination of pure aloevera and tea tree oil applied as often as I could--4-10/day, plus a Chinese formula calledClear Heat, Clean Toxins (Isatis). You might be interested in the fact that in Chinesemedical theory, the Liver Meridian runs through the genital area, and so I was trying toclear "liver heat." All of a sudden, my vv returned after 7 years this week. I remember the years of horrorand sleeping with a bowl of ice cubes to insert into my vagina so that I could grab a fewminutes of sleep with the cool water running down before the burning would awaken me. Atage 50, I don't think I can go through this again. So yesterday I started the same herbs, aloe and tea tree oil again, and my symptomsdisappeared by 50% right away. If anyone had dared say it was psychological back then, I would've been furious, butnow that I find myself in another relationship with a component of sexual rejection, Iwonder...since my vv cleared up after my marriage broke up, and now I'm relapsing withinthe context of a very questionable relationship.....does anyone have any thoughts on this? Incredible to find this website, if only I had had this during the Eighties. I spent atleast $5000 on docs and tests to get this info. I have an intuition that acid-alkaline imbalance is involved and would reallyappreciate any info on how to moniter this. Also whether estace cream helps for burning. My prayers and love are with you all.
CommentHi. I would like to know if anyone has tried Lidocaine ointment? I just got aprescription of it today. I am afraid to use it, thinking it might make things worse. Asof now I am taking a Hormone called prempro, a antidepressent, and using a Hormone creamat night. Any info would be helplful. I will look for anyone's answer in the currentgustbook. I check the gustbook about every day, hoping to find something new to try.Thanks again. Wishing you all the best.
CommentI live in Montana and just found a PT that deals with biofeedback, I am going to giveher a try. She deals with mostly incontinence but has done some work with VV. She told methat the women she has worked with do have some success, with relaxing and feeling better.I will be glad to forward her name to anyone that would like it, just email me. Wish meluck. :) Lyn j
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CommentThis is to Mary J. who inquired about anyone who has used Lidocaine. I was given aprescription for it also, about a year ago. It did not seem to help me, but it definetelydid not make me worse. My best results have come from a minor surgery I had (not theterrible laser one) and from taking Elavil. My pain is about 90% better now most of thetime. If you want to know about my surgery, I'd be happy to tell you about it. I hope theLidocaine works for you.
CommentHi everyone, It has been a while since I last posted. I suffered from vulvar vestibulitis and lichenschlerosis. After a vestibulectomy in 1998, sex has been 100% pain free for my husband andI. I still have flares of the lichen schlerosis because it is a chronic disease of thevulva. I have been wondering if anyone would be interested if we were to set up a supportgroup for vulvodynia sufferers. We could meet somewhere in the central part of the U.S. Icould check into getting us a conference room at a hotel for a weekend or some other hall.It would just be nice for others who have this disease to share good and bad experiencesand just have a shoulder to cry on. For those of us who have had success with doctors wecould give out names and numbers. It would just be nice to put faces with our stories andlean on each other for support. Also to know that we are not alone. There are supportgroups for many other diseases, but I haven't found any for this. If anyone is interestedemail me and If I get enough people who are interested, I will check into it. Thank you, Nicole |
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