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Commentwe have just archived our seventh vulvodynia guestbook and started our eighth. Theguestbook continues to be one of the most popular pages of the website. Welcome to all andplease leave us your comments concerning vulvodynia.com
CommentDr. Glazer, do you know of a Gyn. in San Diego besides Dr. Willems who knows how totreat Vulvodynia? I live inland and his office is a long way for me to drive. I'm amazedhow many Gynecologists don't have a clue how to treat this condition. I had to tell mycurrent Dr. how Dr. Willems treats Vulvodynia because he didn't know. Thanks. Sue
CommentI wanted people to know I saw Dr. Glazer for about five months and his treatment reallyworked for me. I went from having a lot of pain to none at all. It's really terrific!
CommentI would be grateful for any information about partners view on the subject ofvulvodynia or any work with couples with this problem area.
CommentDear Dr. Glazer, my life is in chaos since my development of vestibulitus. I was apremed student and a runner but have had to relinquish both. I am moving from Chicago toMiami/Ft. Lauderdale next month and I am broke from my extensive medical bills. Is there atherapist you can recommend in the Ft. Lauderdale/Miami area?Any other suggestions?Thankyou, Gretchen
CommentI wanted to let everyone know that in the NVA newsletter there is an article about aprogram that will be on Wednesday, April 7 at 10 pm. It is called Body Human 2000: Love,Sex and the Miracle of Birth. There will be a story about vulvodynia. Please pass on theword!!
CommentI contracted vulvodynia two years ago February but it wasn't diagnosed until sevenmonths later. I'm happy to report I did NOT have the slice and dice surgery recommended bymy ob/gyn, but sought homeopathic remedies and my own body's wisdom to make peace with mypain. I changed my doctor, my diet, my relationship, my boundaries, my attitude. It wasn'teasy, but today, I'm virtually pain free except when I'm pre-menstrual and very stressed.Will the calm last? I don't know. It's one day at a time. My prayers for your relief fromthis enigmatic condition.
CommentI am so glad that I found this website. I have been suffering from lichen schlerosisfor a lot longer than I have been diagnosed. I recently moved back to Oregon, and I wasterrified about not finding a doctor that knew what this was, let alone what it is like tolive with. I have been using a testosterone ointment and some days are good somedays arenot. I am wondering if there are other options. I was only diagnosed, 9 months ago and Idon't really know a whole lot about it. I don't even no if it is transmittable to otherplaces on my body, or to another person, which has not helped me in dating at all!!! Ifanyone, ANYONE has more information for me, or if you have partners that can give me theirtake on living with someone with this I am really needing information, and wouldappreciate it more than you know. If I can stop crying long enough, I would also like tothank you all for your stories, I didn't get to read them all, but I did read quite a few,and while it won't completely cure my lonliness in this, I don't feel so all alone. If Icould hug you all I would Thank you
CommentIF ANYONE HAS A CHILD WHO HAS BEEN DIAGNOSED WITH VULVODYNIA, I'D BE INTERESTED INCORRESPONDING WITH YOU. MJELK@AOL.COM
CommentIF ANYONE HAS A CHILD WHO HAS BEEN DIAGNOSED WITH VULVODYNIA, I'D BE INTERESTED INCORRESPONDING WITH YOU. MJELK@AOL.COM
CommentIf anyone has any iformation on allergic skin reactions and how long the skin cancontinue to itch after the allergen has been removed, I would be extremely happy to hearfrom you. I've itched for almost a year and a half now. I've been checked for allSTDs--nothing. I just continue to itch. I beg for your prayers.
Commentif anyone knows of a good doctor knowlegable in treating vulvodynia/vestibulitis in theutah or salt lake city area please e-mail me. thanks so much!!!!!!!!!
CommentWhew! Am glad Dr. Glazer started another guest book.The other was really full. Whichjust goes to show how many people are affected my this terrible condition. It is such ashame there aren't more Dr. Glazers around.Keep hoping to see the condition featured onone of the Prime Time News shows.They sure got the Viagra info. on quick enough. For thoseof you who are new to this site it is a good idea to take the time to read All themessages posted so you can get an idea of the things that others have tried,and theprocedures that do and don't work.As for myself- I gave up on trying to deal with thedoctors available in my area.AS I stated before-there are simply not enough doctors likeDr. Glazer around!I had been in constant pain for almost a year.I had fallen into a deepdepression and was full of despair.Tried the Zoloft a doctor prescribed and it was anawful experience for me.Best advise I have to offer is this (A) NO Baths-only showers (B)drink plenty of water-and I do mean PLENTY (C)When possible-pour tap water over vaginalarea after urinating and only use a white name brand unscented tissue (D)I do notrecommend the use of Astro-Glide or any of the other lubricants during sex.Especiallyvaseline.(E)I apparently had a bad reaction to the material condoms are made up of.Because my husband and I suspected semen to be a part of our problem,we tried the condomthing and it made matters worse and I didn't know things could have gotten worse at thattime.It's also important to twice rinse your clothes,especially underwear.And only cottonundies when you do wear them.I try to wear long skirts and long dresses and ususally donot wear undies then.Nothing wrong with that as no one else knows and believe me ithelps.Hot tubs,spas,saunas,pools,etc are all contributing factors in making the pain andburning worse.If and when you use these facilities,Immediately wash your vaginal area.Same is true with intercourse-wash,wash,wash!For those of you suffering at this time andunable to have sex-as I was for almost a year-try these simple things and see if it makesa difference.Of course if you are fortunate enough to have found a doctor-you wouldnaturally follow his/her advise.I grew weary of test after test and with no medicalinsurance I simply could not keep going for more test that seemed to be going no where.Ieven had to spell Vulvodynia to one of the doctors.Another one was just positive I hadHerpes-not!Once that theory was shot down-he was not interested in actually solving theproblem.So I made up my mind to find a solution on my own.I know there is no sure firecure at this time for this dreadful curse,but for the time being I am doing very well.Somedays I feel the familiar symptoms flaring up-so I double up on my water intake and am sureto use water after urinating on the vaginal area.A spray bottle of water works well also.Ido Not find that soaking in Aveeno or Anything helps at all.In fact soaking in a tub is adefinite NO NO for me.Hope this will help some of you...If I can think of something I mayhave left out,I will add on a later post. For now I continue to pray for us all.Pleasekeep the Faith and do not let this condition get the best of you.
CommentI AM VERY INTERESTED IN FINDING A DR. IN PENNSYLVANIA WHO IS KNOWLEDGABLE IN THISSPECIFIC AREA. MY FOUR YEAR OLD IS ONCE AGAIN EXPERIENCING A PROBLEM
CommentHello everybody, I have been reading these guestbooks for months, I thought it was myturn to make a contribution. I have been suffering from vestibulitis for nearly threeyears now: I have burning and pain in my vestibular area (3,through 6 and 9 o'clockpositions) when I'm touched, and also burning, itching and sometimes stabbing painsgenerally. It gets worse a few days before my period and also when I do anything thatincreases my blood flow (eg: drink alcohol). Also I often get mild cystitis-like symptomsbut this may not be connected. When I first went to the Dr. I was, of course, diagnozedwith Thrush although I didn't have any symptoms except the itching/pain. Later I wasprescribed steroid creams which didn't help and might have made it worse. I have foundsome things that really help, so that it doesn't bother me much from day to day, althoughsex is still painful. The thing that seems to have helped most is only bathing the areawith clean, cool water and not allowing any soap, shampoo, aqueous cream etc near it.Don't use any sort of ointments/lubricators either. I also wear light baggy trousers anddouble-rinse my underwear when I wash it; I use an enzyme and bleach-free detergent. Nosexual contact, of course, also helps too. I have tried various diets which don't seem tomake any difference, I haven't tried anti-depressants but feel it's unlikely that theywould make any difference. My symptoms first began a couple of months after a big courseof metronidazole (Flagyl) and I often wonder if this was a contributing factor: lots ofother people signing the guestbook seem to have been taking antibiotics when their problemstarted, too. I would be interested in hearing from anyone else who thinks there's a linkhere. Vicky
CommentI thought I would feel relieved after finding a name for my problem after all theseyears, but instead I'm very upset after reading all the letters. I recently used Terazol 7for what I thought was a yeast infection, but after 7 days I tested positive for BV. ThenI took 7 days of Flagyl for the BV, but I still had pain and severe burning. Then I tookone day of Cleocin but went in to see if I had yeast and needed yeast medication instead.The results showed no BV and no yeast, but they are culturing the yeast now. My doctoralso said that my tissues didn't look irritated. The burning seems to coincide with theacid level of my body. The first time that my bladder went bad (spasming, frequency,urgency, and a blubbling that I couldn't identify as bladder or vaginal) was preceded byacid reflux and acid stomach. I had an IVP which only showed a moderate amount of urineleft in my bladder, and a cystoscopy which showed a normal bladder. I have symptoms of IC,but like I said, the cystoscopy showed otherwise ( the urologist did distend my bladderwith water). I get UTIs about once or twice a year. I seem to constantly have BV or ayeast infection. A few years back, I had two kidney stone passing incidents, each one yearapart. And about a year after that, I had "sand" when I urinated. But soon afterno "sand" was detected. I was diagnosed with Irritable bowel syndrome 20 yearsago (I'm in my 30s now), but as long as I eat enough fiber, I don't have any intestinalpain. My skin is getting more sensitive, and my allergies are getting worse. Last spring Igot hay fever for the first time. My sinuses bother me most of the time. I've had a smallto moderate amount of back problems (sciatic nerve and lower back pain). And since eveyoneelse is mentioning the tailbone thing, when I was in 7th grade, I did a handstand andlanded on my head. I couldn't sit down normally until a doctor put everything back inplace. I have had two children, and I am gaining some weight as I am aging. I think thisis messing up my pelvic floor muscles and causing some of my problems. I notice that tosome degree, my symptoms of pain and burning decrease when I contract these muscles.Severe stress also caused severe burning when my son was hospitalized, but I lead a fairlystress-free life. I have had trouble in the past with panic and anxiety disorder, but thatwas about seven or eight years ago. DOES ANYONE KNOW OF A KNOWLEGABLE AND HELPFUL DOCTORIN THE SEATTLE /EASTSIDE AREA? The two OBGYS's that I've seen haven't given a name to thisproblem. They just say to use basis soap, no fabric softener sheets, and watch thecaffeine and sugar. I've have this problem off and on over 20 years, but it's getting muchworse now. I would very much appreciate any help. Lisa
CommentHi everyone, I am so happy to have come across this website! I have suffered from vulvavestibulitis for 10 years. I was diagnosed in England were I was treated with manydifferent therapies. I will list the treaments I have tried, maybe there will be somesufferers who can benefit from them. I had a course if interferon injections for 14 dayswhich I injected into my stomach. The treatment didn't cure me, but improved my conditionby about 60%. I have used various creams one which I found to be soothing was a herbalcream called calendular. I have used hydrocortisone, but only found mild relief. A doctorin the UK told me to take a 1000mg Evening Primrose capsules, which seemed to help alittle. I have also used lydocain gel to numb the area, which was a waste of time for me.Alongside all this I have been through the whole oxilate tests, doctors found I did nothave a high oxilate level in my body, but it may be worth looking into.It is also a goodidea to get tested for allergies, I was and the Dr's found I wasn't allergic to the thingsthey tested me for. But I am now considering getting tested for other things eg foodallergies. At present a Dr has told me to take 1000mg of calcium a day as a vestibulitispatient found it to give her relief. I also take 400mg of acidophilus daily. This is 100%natural and is what is found in live yoghurt. It helps me have less yeast infections. Theless we have to take treatments for yeat infections the better. I was told that thepreservatives in such medicines can trigger and make vestibulitis worse. I find I gothrough good months and bad months. In 1997-98, I went to work in Hawaii and found I wasso much more relaxed. I was 100%pain free for almost a year. Since moving to Virginia andstress levels rising again I have found that I am now going through a rough time again. Ihad BV then a yeast infection and now I am suffering again. Stress diffinitely makes thisskin condition worse. I have taken up Yoga in hope that it may help. I also tryedreflexology, this treatment seemed to help but was to costly. Has anyone out there got anynew things to suggest? I am interested in the biofeed therapy, has anyone tryed it? Doesanyone out there have any information on the connection between birth control pills andvulva vestibulitis? I find it to make my symptoms worse. Please try to stay as optimisticas you can, I try to focus on positive thinking. I know that if I get upset and stressedwith this that my symptoms/pain doubles. Look forward to hearing from you.
CommentHello!!! I am so happy that I came across this websight! I have been reading everyone'scomments for the last 2 hours. I can't believe so many people are going through the sameliving hell as myself. It is so comforting but also so discouraging. I am 24 years old andhave had vulvodynia for 8 months. My story began when I started itching and burning andjust like most of you I was told I had a yeast infection. After months of taking differentanti-fungal creams my doctor was convinced I had an STD and proceeded to test me for everydisease imaginable. Well, after all the tests came back negative he told me there isnothing he can do for me. At this time my symptoms were unbearable. I had constant pain,itching, throbbing, and a whitish discharge. I then started having burning, shooting painsinto my thighs. DOES ANYONE ELSE HAVE THESE PAINS IN THEIR LEGS? It was then that I wentto another doctor who told me I had vulvodynia but she didn't know how to treat it. I haverealized that if there is going to be some cure for this problem it is going to come fromus experimenting and communicating with each other. It is obvious that most doctors arecompletely ignorant on the subject. I started going to a herbalist and am going to try thelow-oxalate diet and calcium citrate suppements. If any of this works, I will let you allknow. This problem has ruined my sex life competely, I JUST WANT TO BE A NORMAL 24 YEAROLD! If anyone knows of a doctor in the northern N.J. area please let me know. Otherwise,please feel free to write me and vent. Good Luck to everyone!!! KAREN
CommentI believe I am a sufferer of Vulvodynia. After reading on several articles andinformation, I meet alot of the symptoms and past history. What can I do? I am from theLubbock, TX area.
CommentI heard about vulvadynia on a CBS special Body Human 2000. I was so glad to hearsomeone else talking about this. I have suffered from pain for four years and seen 4different doctors, each of them telling me something different. I do have HPV, but none ofthem have been able to tell me whether or not that is causing my pain. I was amazed when Iread about the research of this being genetic. I have a first cousin who is also sufferinglike I am. I am newly married and this is definately causing a problem. Thankfully myhusband is very caring and understanding. But I am willing to try anything to stop thispain. Any advice is welcome!!!
CommentThis is my 3rd entry. I am unfortunately a sufferer with Vulvar Vestibulitis going on 3years. I experience burning pain constantly along with painful intercourse. I haveextensive knowledge on this disorder, as I have read everything and anything, and I haveseen over 20 physicians. I ,too, have tried many things. Lots of creams, antidepressants,anti-epileptics, herbal treatments, calcium citrate and the oxylate diet. My urine wastested by Dr. Solomon (Vulvar Pain Foundation can give you info on him). I was found tohave high levels in my urine. I faithfully tried the diet and calcium for 2 years. I amnot better from it, but it does not mean that you who have not tried it, to not do it. Iam currently doing extensive PELVIC FLOOR work with a fantastic physical therapist whospecailizes in pelvic floor dysfunctions. We also use ULTRASOUND in the vaginal area and Iget pain relief from this. My P.T. recently went to a seminar on Vulvar Pain in San Diego.The take home message from the meeting was that these therapists believe that the pain isdue to nerve entrapment. I was thrown from a horse as a youngster. I landed on mytailbone. So, we are focusing on stabilizing the SI and working hard on relaxing andstrengthening. We use a vaginal sensor that is smaller than a tampon. This biofeedback ishelping. From 1 year to now, I am better, but I still am in pain. So, hopefully thisinformation will be of use. I wrote Dr. Glazer and asked him if anyone is using ULTRASOUNDfor pain relief. To his knowledge, no one. If you are trying ultrasound, please email me.Good luck out there. Oh, and to reiterate on what someone said earlier, CBS put on aprogram tonight called BODT HUMAN 2000. There is a web site BODYHUMAN2000.COM. and theyactually had a segment on VUVLODYNIA. Praise God that the word "VULVODYNIA" wasactually used. It only highlighted how surgery helped her and did not go into othertreatments. At least we got some media on our problem and the show's host James Brolincalled it a DISEASE. We've come along way baby. God Bless and keep fighting for a painfreelife.
CommentI was not aware of this condition until I watched a special called Body Human 2000. Iin fact think that I had this condition. When I was married to both of my husbandintercourse was so painful that I could hardly stand it. So natually it was not enjoyable.I went to a sex therapist and a hypnotist to resolve the problem. I thought for sure itwas all in my head After I was divorced I had a vaginal cuff revision My GYN said that Ineeded it and so I let him do it. At this time it is no longer painful for me to haveintercourse.
CommentI would like to get some feedback from husband's or boyfriends of women who havevulvodynia. How to be supportive in a constructed way and how to deal with the emotionalstress it puts on a relationship. We hope to have children, but we have not been able tohave intercourse for almost a year. My wife is going to a physical therapist once a week.I also have used the technique shown to us by the therapist to massage her vulvar floormuscles. I have not seen any men write in to this guestbook yet I hope I get a reply.
CommentI just learned about Vulvodynia from the show Human Body 2000 broadcast last night. Inever knew such a condition existed. It literally brought tears to my eyes when I heardthis women describing her symptoms and how it has desroyed the intimacy between her andher husband. I too have been plagued by painful intercourse for a couple of years now. Therelationship with my boyfriend (future fiance) is slowly deteriorating. I have been to myob/gyn so many times over the past couple of years with complaints of severe burning andpainful intecourse. After too many cultures, biopsy's, STD workups, and even a cystoscopy{which have all been negative} I am always told the same thing- there's nothing wrong!!!There is something wrong and this isn't just in my head. I am 26 years old and want tohave a normal healthy sex life. My boyfriend and I are so frustrated. HELP- I would liketo find a doctor who knows about this condition in my Buffalo, NY area!!!- if anyone canhelp or would just like to talk please contact me.
CommentHi everyone. It has been a few months since I posted and thought it was about time.There is hope for this awful disease. I can finally say that I am 100% cured. In June of'97 I was on my honeymoon with my husband when my awful ordeal started. Like many of you Iwas on a course of antibiotics for a sore throat. Our second night on our honeymoon wemade love. I awake the next morning with an awful burning sensation. I lay in the bathtubfor hours just bawling. My husband is a nurse and didn't think this was right. We also hadhad 5 good years of intercourse before we were married. We went to a walk in clinic inFlorida and I was told I had a urinary tract infection. I was put on another course ofantibiotics. A few days later we went home and I was fine for about a month. Then Istarted to burn again. I went to see my nurse practioner at my OB/GYN's. Before I had gonein I spoke with my older sister. She started with the same symptoms about 2 years beforeme. After 8 months of suffering she found a specialist in vulvar disease. She wasdiagnosed with Lichen Schlerosis. I took the pamphlets into my doctors office and showedthem to the nurse. She wouldn't believe I had it because my vulva wasn't whitish inappearance. I was RED! She just dismissed it as a yeast infection and sent me home. A fewdays later I was put on more antibiotics because she said I also had another UTI. I onlykept getting worse. Sex began to become very painful. It felt like knives cutting me. WhenI wasn't getting better my sister told me to get a referral to her doctor. I did, and itwas the best thing I could have done. I too after being biopsied was dianosed with LichenSchlerosis. I was placed on Estrace and a topical steroid "Diprolene", to makethe skin disorder go into remission. Once the daily burning stopped, I was still havingpain with intercourse. I found I had vulvar vestibulitis. In February of 1998 I opted fora vestibulectomy. It is a good thing that my husband and I didn't have the internet atthat time because I might not have chosen it had I read all the controversial opionions onit women have posted. I knew nothing! Luckily I had a COMPETANT doctor. I had 11 glands inall that extended an inch and a half deep. They were removed by laser. Then my hymen wasalso removed and my perineal skin was advanced more anteriorly and sewn inside me. It tookabout 5 weeks for the swelling to go down. I looked so gruesome I never thought it would!After 3 months we got the go ahead to have sex again. It was much improved, but still wasa little uncomfortable. Because of the discomfort I no longer had an interest in sex. Wetypically only had sex 1x/month since 1998. I returned to the specialist in January of1999 because my vulvar skin started to burn again. (That is the thing with lichenschlerosis; it goes away with treatment, but will eventually some day start again. When itdoes you just have to be put on medication to make it go in remission again). I was verydepressed because our sex life had gone from very active to non-existant. She said itshouldn't be that way and sent me to an OT for biofeedback. I was very sceptical becauseit just seemed so hokey. After 2 months though, and daily tensing and relaxing exercises Ican finally say I am 100% better. My husband and I have had more intercourse this lastmonth than we have in 5! In this week alone it has been 3x. We are just so thrilled tohave our lives back. I also went back to the specialist Wednesday and have gotten the goahead to start having a family. I just wanted everyone to know that there is hope. I'm not saying that surgery is theonly way to go because I have read others' horror stories. I truely only trust myspecialist. I promise anyone that if you see her she can help you too. We should not haveto accept non existant sex lives and burning vulvas. It is just not acceptable! I alsoemailed CBS tonight and asked them to air a story strictly on Vulvodynia so that themedical community becomes more aware of this condition. I encourage others to do the same.We need to be heard! When I first started with this we didn't have a computer so I thoughtthat I was a freak and what I had was really rare. But, we all know that from reading eachother's stories there are many of us out there. I pray that everyone finds some answersand relief to there pain. I just wanted to give you hope that there are some successstories. You need to remain strong. If I can help anyone I will. I have told others theonly way I can justify being afflicted with something so horrible is to help others whoare in a place as bad as I was. God bless all of you.
CommentAre there any specialists in the Tucson area that can treat this difficult probelmcompetently?
CommentIs there anyone who knows of a doctor in the Akron/Canton Ohio area who isknowledgeable and knows how to treat chronic vestibulitis? I also suffer fromfibromyalgia. My doctor says she has no other options for me but surgery. Forget it!!!! Iwould appreciate any information provided.
CommentHello, I have suffered from vulvar vestibulitis for at least 7 years. I went to manyob/gyn doctors who mostly told me to go home and relax, the pain during intercourse wasall in my head. One even gave me pain killers to take before we made love! I am very luckythat my husband is very understanding. Seven years ago I finally found a doctor who toldme there was a physical problem that could be fixed with surgery. I didn't question, Ijust said do it. My surgery was successful in that the pain is 90% better. My problem nowis how to undo all of the pyschological effects of years of pain. We have been tocounselling several times. Will I ever be able to have a normal sex life?!
Commentdoes anyone know of a compassionate doctor who treates vulvar problems in the SanFrancisco Bay Area?
CommentPlease, I' m a vulvodynia suffer, and I'm looking for friends with the diagnosis inCharlote, NC I would appreciate if someone can help me!
CommentFirst, I would like to thank Dr. Glazer for replaying my e-mail. I really aprreciatethe time and attention you gave to me. God Bless you ! Second, I would like to meet othervulvodynia sufferers in Charlotte, NC pewterrose@aol.com
CommentWell, I'm glad to say that my Vulvodynia is under control with Estrace cream andcalcium citrate. If only I could say the same about my menopausal symptoms! Does anyone inSan Diego want to get together and talk? Let me know. Sue
CommentPlease tell me how ot get the proper diagnosis of vulvodynia. I have spent the past 25years in pain and no one has been able to diagnose my problem. I am desperate for any helpand advice.
CommentI am amazed by this site! I started having problems during my pregnancy in 1997-98,don't remember exactly, i just remember that sex became extremely uncomfortable at onepoint and one of my midwives explained to me how the body, muscles and ligaments willsometimes change suddenly...a very realistic and reasonable explanation. My son will be ayear old on the 28th of this month and it is stillimpossible for my husband and I to havesex....he is very!! frustrated needless to say. I had been treating myself for yeastinfections with OTC meds...thinking that was my problem, this worked temporarily andfinally two months ago I went to see my primary midwife to see if she could help with the2 problems I was experiencing...chronic yeast infections and painful intercourse. Sheswabbed me and it came back negative...the swab just about put me through the roof and shetold me that she felt I had VV....how lucky am I to have someone knowledgeable about it.She gave me samples of Premarin to use and a scrip for Xylocaine (haven't touched ityet...the thought is too painful!). The premarin has been somewhat successful in relievingthe immediate dryness...but definitely not a cure. She also conferred with one of herpartners in the practice (from Britain) and she felt that the symptoms I am exhibiting aredefinitely VV. I have received the name of a doctor at Oregon health Sciences University who isstudying this and what we have decided is that I will try the Premarin for 2 months, thatwill give my birth control (Depo) time to be out of my system...am due for a shot at theend of the month and am not getting it...see how I am responding at that time and thenrefer me up to OHSU if necessary. My husband and I would like to try and have another child in the next year or two...butit seems like a mountain that I am dealing with. I am very blessed to have the son I haveand will be just fine if we can't have another one....does anyone have any suggestions forthis? I feel very fortunate that I have a great relationship with this midwife, that we cantalk openly about this issue and that she is willing to learn more about it and work withme. I know that not all practicioners are like that. I have already sent her some researchthat I found and will be sending her more, including this website. Comments and suggestions are welcome....good luck to all of us!
CommentI am 27 years old and have been suffering with vulvodynia for about 8 years. The onlyrelief I have gotten is with the calcium citrate. However, I am looking into getting thesurgery. I would apperciate any information about surgery. Is there anyone out there whohas had the surgery? Has it been successful? Jillwinter@AOL.com
CommentOkay, my turn to contribute. There's something I've wondered about but too embarrassedto ask. Have any of you, in the more carefree days of sex, (gosh, did they really everexist?) - anyway, did any of you ever use a vibrator? At the time I used to wonder if thiscould eventually cause damage, i.e. chronic vulvar pain. I have had the same kind ofhistory as most of us, frequent yeast infections, irritable bowel, and a hysterectomy 4years ago. I don't remember having the burning until after the hysterectomy. But I passedit off as not enough foreplay or not enough lubrication or something. Anyway, the burningwas present during sex only. But after getting a bad bladder infection in June, 1998,followed by yeast and vaginal bacterial infections, etc. that's when the generalized painreally took off. At first, I had hopes it would go away once the infections were cured.BUT the infections WERE cured, and still here I was w/so much pain that I lost my job,couldn't sit, can't wear jeans. Oh, and sex, forget it. I was in so much pain, I couldbarely stand to touch the area even to put diaper rash ointment on it. Okay, so anyway,see? Yes, my symptoms and the start of it all are very similar to many of yours. But Ihave recently thought about the vibrator and wondered if there is some connection. I meanhow good could that have been for the nerves in that area thats loaded w/sensitive nerves.I'm not signing-I'm too embarrassed, but please, please any of you w/similar experiences,please respond on this guestbook. Thanks, and my prayers are with all of us!
CommentI have had vulvodynia over 7 years and just discovered this site. Two years after theonset, I found out about the Vulvar Pain Foundation in Graham, N.C. phone 336 226-0704.They put me in touch with Dr. Solomons in Denver, who has an ongoing vulvodynia researchproject. He analyzed my urine. This was all done through the mail. He sent a collectionkit for 10 samples in a 24 hr. period. I sent it back overnight. Half of the samples wereabnormally high in calcium oxalate. Dr. Solomons recommended a lot oxalate diet andcalcium citrate taken at specific times of the day. He later added glucosamine. His phoneis 303 388-7140. This treatment provided a great deal of relief but I still had someburnining. About a year and a half ago my doctor prescribed estrogen cream to be appliedtopically to the vulvar skin twice a day. I use ortho-dienestrol 0.01%. This has made themost dramatic improvement. It is very soothing and eventually took the burning away. Ititches at first as the skin begins to knit. My doctor said my skin looks normal now. Adaily sitz bath with warm (not hot) water with Aveeno oatmeal helps. Please contact me ifyou have any questions. Gail
CommentI have severe endometrosis need to find DR in Phila PA area Im in severepain HELP PLZc_manz@hotmail.com
CommentI am 28 years old and have been suffering with vulvodynia for the past 9 years but Iwasn't diagnosed until a year ago. After reading many entries in this site, its comfortingto know I'm not alone. I'm really glad I found this site. My condition started 9 years agoas a major yeast infection after taking 2 antibiotics at the same time. After that yeastinfection, things were never the same again. I started having painful intercourse, chronicvaginal itching and there was always a varying degree of "vaginal irriation anddiscomfort". I was checked for STD's which were negative. My tests kept coming backas bacterial vaginosis and yeast. I was put on every yeast medication and antibiotic forthe "general bacterial infection" out there, but I never truely got relief. Ontop of the vaginal stuff, I kept getting many UTI, so again more antibiotics as well asexplanations from my doctors to avoid soap, tampons, douches (I never did douche) etc..One urologist even put my on preventative antibiotics to be used prior to intercourse.Nothing helped. I started undergoing various medical testing to figure out the "trueproblem", besides the usual cultures and treating for infection. I had a cystoscopywhich was negative, Pap smears, colposcopy, pelvic and abdominal ultrasound, upper GI,barium emema, pelvic MRI and lumbar MRI which were all negative! Nothing found. Oh, I alsohad a vulvular biopsy which showed "chronic inflammation". I was given a steriodcream for that, but little relief. After going thru various urologists, ob/gyns,internists, psychologists, I turned to accupunture and biofeedback, with slight relief.Right now I'm seeing an osteopathic doctor, who dx my vulvodynia to be neurological an"irritable sympathtic nervous system". He put me on high doses of dailyneurontin and prozac (both I've been on for a year) and it's helped some but not a majorimprovement for me. I've also been taking calcium citrate with not alot of improvement.I've recently gone thru 3 sympathetic nerve blocks which again have helped some, but nobig relief. I still have the daily burning vaginal pain and irritation, with urinarysymptoms of burning and frequency and very painful intercourse. I haven't been able tohave intercourse with my husband in 2 years--it's extremely frusturating. Now I'm at thepoint where I'm considering surgery because, I haven't found relief any other way--mycurrent doctor has been suggesting a sympathectomy (remove the nerve roots that feed thevaginal, vestibular area). I'm looking for any other suggestions! One thing I haven'ttried, which I've read is the estrogen cream. I'm considering calling my doctor for that.If any one has suggestions or insight or just wants to share with me, it would be greatlyappreciated! Also, ANYONE KNOW OF A PHYSICIAN WHO SPECIALIZES IN VULVODYNIA IN THENORTHERN VIRGINA/DC AREA?
CommentWhile I have not been diagnosed with vulvodynia, I think I have this condition. I havebeen suffering (like all of you) with pain and burning for about one year. I too have beenwrongly diagnosed with yeast infections and bacterial infections and all other tests arenormal. I have used every cream out there. So far all the doctors I have seen keep gettingfrustrated and sending me to other doctors. I live in the Chicago area and really want tofind someone here who can help me. If anyone knows someone I would appreciate the help.Thanks in advance to all of you for sharing your stories. Holly
CommentI was 19yrs old when I was dx by vulvodynia. I had a wonderful world renown MD. untilhe was sued. His name was DR. Richard Reid. Does anyone know where he is. He really helpedme. After 5 laser surg, interferon inj, ultrasound and many other tx I still suffer fromit, especially during intercourse with my husband. I have yet to find anyone who willtackle this condition in Michigan. DR. Reid was from Austraila and lost his practicebecause of this. The women who sued were just not happy people. He was honest and he wasone of the first MD. to take us on. please if anyone has information about him let meknow. I am a registered nurse and I am afraid to let anyone else touch me regarding this.thanks!
CommentHey gals,
CommentHey gals,
CommentAfter reading the entries in the latest guestbook, I don't know whether to laugh orcry. I am 24 and have had vulvar vestibulitis for over six years now, but like most of youwas diagnosed only two years ago. I have seen several doctors during this time (not bychoice - but due to the fact that I have moved around alot: I am originally from Canadaand am now in the UK). Unfortunately, I've not found a cure yet and am beginning to wonderif I ever will. Sometimes I feel that not knowing was better. It's depressing to know thatthere is a name for this awful disease, yet no cure. Anyway, here's my story: Six yearsago I had several yeast infections one after another. My doctor at that time thought it agood idea to treat me for something (I don't recall the name) that I might be carryingthat was causing these infections. I was carrying this 'thing' albeit that it is harmless,and so began an initial ten day treatment without luck. I then completed a second ten daytreatment before my doctor told me not to worry, I was simply a carrier and there wasnothing that could be done. My VVS began immediately after that treatment. It began asmild discomfort during intercourse. Of course my doctor found nothing wrong when Icomplained of symptoms (discomfort and dryness) and sent me home with a lubricant.Unfortunately, it very quickly became obvious that sex was no longer enjoyable for me.However, at this point I began to think it was me!! I even went to the extreme ofquestioning my sexuality to the point of not dating men for two years! Admittedly, Ididn't have any problems with intercourse! I do however have longlasting emotional scarsthat I'm not sure will ever go away. After two initial years of pain and agony, two yearspassed where I didn't even think about it. Eventually however, when I found myselfinvolved with a man again the problem quickly arose. I had one month of mainly pleasurableintercourse until overnight the pain came back with a vengence! For the last two years Ihave not been able to have any type of penetration whatsoever. I immediately began to seea doctor and eventually found someone who knew about VVS. My first treatment was a sixweek dose of Premarin cream (which now that I know where it comes from will not useagain). After three weeks I tried having intercourse once more and had the most memorableweek of sex ever. I was so elated to be able once more to have sexual relations with myboyfriend that I think we must have had sex at least once every day. My joy was shortlivedhowever, for as quick as the pain went away, it came back. After I completed the otherthree weeks nothing changed. I saw my doctor once more and she was about to prescribeanother cream, but at this time I moved across the country. I was able to see anotherdoctor who I wish I could have began treatment with but again moved before it waspossible. She did however, get me on-line to Dr Glazer's site and it has helped at leastknowing there are other sufferers out there. Since coming to the UK (where I expectedtreatment to be abundant...) I have been a victim of the 'passing the buck' syndrom. Myconsultant here, immediately diagnosed me with vulvar vestibulitis and sent me home withTrimovate cream. However, after only a few doses I began to feel an excruciating burningsensation from somewhere 'down there'. I find it difficult a lot of the time todistinguish where the actual pain is coming from since it is everywhere. We discoveredthat my urethra was extremely enflamed and irritated and was causing this new pain. Forthe past year now I have had daily burning sensations, but not from the vulva!!! My painstems from the urethra and even in the anal area! The only time I ever experience pain inthe vulva is by penetration, and since there is none of that, the pain isn't there.Because of the problems with my urethra however, I was sent to a urologist. Eventually, Ieven had a cystoscopy to no avail of course! I also saw a dermatologist who confirmed thatthe actual skin was healthy. These two referrals took over 8 months of waiting!!! I am sofrustrated because I feel like it was all a waste of time and that I could have told mydoctor who referred me the same thing in the beginning! I am trying to be patient, but Ireally think it's best for me to find another doctor. My current doctor is a researcher atthe Royal Free Hospital, Hampstead, London, UK. Unfortunately, I feel that she is moreinterested in finding a cure for herself than for her patients!! I am despairing but amtrying to find some sort of hope from your stories. My two year relationship did notsurvive the stress of VVS and the last thing in my mind is to even attempt anotherrelationship knowing I have this dreadful disease. I thank you all for listenting to mystory (those of you who actually read it all the way through) as this is probably thefirst opportunity I have had to actually 'speak' to someone who knows what I am talkingabout. I am not really looking for a miracle cure, although one would be nice, but wouldbe greatful to anyone who just wants to talk! Please feel free to e-mail me with yourthoughts! Good luck to everyone! Crys
CommentI am writing with the hope that anyone with a similar problem might get the correctdiagnosis and treatment plan that I have finally found with Dr. Howard Glazer. Mydiagnosis is Levator Ani Syndrom. It is a pelvic floor muscle disorder. I have had thisdisorder for over seven years. I have been to eight (proctologists & O.B.G.Y.N's)specialist whose opinions ranged anywhere from you have a "back problem,""it's just in your head", to having one doctor actually tell me that I must havebeen molested as a child! My symptoms include unbelievable pain in the behind area due tomuscle spasms of the pevic floor. I finally found out about Dr. Glazer using the internetwhile researching what I knew had to be a "real" disorder. At the risk ofsounding dramatic, Dr. Glazer has been a miracle for me and my husband. He has diagnosedmy disorder and devised a plan to try and lessen or stop my pain. More than this, however,Dr. Glazer has been one of the most kind, open, humanistic individual I have ever workedwith. After talking and being examined by so many professionals who were unable to helpme, I had become, along with being in pain, very emotional about my disorder. Dr. Glazerwas so understanding/empathetic about what I was going through. It can be so hard when youonce had a "normal" and pain-free life to continue searching for a cure,especially when professionals tell me they've never heard of such a disorder and cannothelp. I want to take this opportunity to thank Dr. Glazer for all of his work in the fieldof pelvic floor disorders. I can only imagine what a stressful field this is working withpeople who are in a great deal of pain. I especially appreciate what he is doing to helpme. I can't say for sure (it is too early in my treatment) whether I will ever becompletely cured, but I can say I know I am improving, and that this is the first time inover seven years of searching that I have finally found hope through Dr. Glazer and histreatment plan. If you have any personal questions to ask me please email me any time.Thank you Dr. Glazer. Sincerely, Kim Palermo
CommentI am from Sweden. Is there any woman from Scandinavia out there? It feels so greatfinding this page. It means very much to know that you're not alone! This page has givenme so much information! IS THERE ANYONE OUT THERE WHO WANT TO WRITE TO ME? I SUFFER FROMVULVAR VESTIBULITIS. I'D REALLY NEED SOME SUPPORT.
Commenti self diagnosed myself last week after stumbling upon literature for vulvodynia. ihave been tormented by symptoms for 16 months now. i have been glued to this site sincefinding it this a.m. i just wanted to thank everyone that has contributed comments abouttheir conditions. i have new strength and confidence to fight the fight - not just for me- but for all of us.
CommentI'm 16 and I just saw the Body Human 2000 special about vulvodynia. For a few years nowI've experienced burning and sharp pain whenever I attempt to use tampons. I've seen manydoctors and they've all told my it's a yeast infection and that everything else isnormal--but I think something's just not right. I'm beginning to think vulvodynia may bewhat I have since a lot of the symptoms mentioned in the program rang a bell. If anyonehas had a similar experience or has any advice for me I'd appreciate hearing from you.
CommentI recently saw a news program on one of the major networks that featured a couple. Thewoman had vulvodynia. The M.D. featured used surgery to solve her problem. Do you know whohe was? Also, I am a nurse practitioner in gyn. i had never heard of vulvodynia until thenews program I mentioned. The very next day I had a patient with the exact symptoms ofvulvodynia. I wasn't sure where to refer her as she had been put off by quite a fewdoctors. I found your web site and I found it a good place to get her started. Can youalso recommend anyone in Ct.? She lives in new london county or surrounding area. Thanksand the internet is such a help for so many!
CommentHello everyone, its so good to see so many people educating themselves about thisdisorder. And cheers to the only male e-mail I've read on this site This is my second entry. I have been diagnosed for almost a year, but have suffered forover two. I am lucky in that I only experiance pain during intercourse. My heart goes outto the women who suffer with VD daily. If anyone knows of any specialists in BC or AB, I would appreciate you letting me know.Preferably in Calgary. I would also love to know if there is any Canadain literature orassociations. Keep up the fight everyone!
CommentI am so sorry to see that there are so many women who suffer as I do. I have found allthat I have read on this site to be fascinating. There is no cure, no treatment works thesame for everyone, be it therapy, oxalate diet, steroids, or surgery. Some have benefittedfrom surgery and some are worse off from it. I follow a slight oxalate diet, I used asteroid cream Desowen 1% and als mineral oil. No pants, only skirts or dresses and nounderwear at nighttime for sleeping. I got quite a bit of relief. When I got pregnant inOctober all symptoms stopped. The raised skin on the vulva is still there but dormant fornow. I can only use mineral oil for now. I am going to ask my dr. for a cesarean. One doctold me not to have a episiomty but to do exercises instead. I am due in june. So Instead,being that sex and a vaginal exam are super painful I should let a baby rip me apart downthere and make it worse? This is incurable, only hormones have stopped it temporarily, Idon't want to lose the relief I had found by having a vaginal birth. I have read somewomen got vestibulitis after giving birth, and one said she did do it vaginally. But whytake the chance? I'ts my life and my body. Theses docs go home and have no idea what aburning crotch is like, but we do. I am hoping someone who has experiences with pregnancyand birth with vulvodynia will write to me. I need evidence to present to the docs as towhy I feel a c section is necesarry. If the appt doesn't go well I will be contacting alawyer about my rights. I will give updates if any one is interested in the legalitiiesshould it happen. I just can't stand crying everynight in fear of worsening the condition,It's all I think about. Thanks for letting me sound off and good luck to all of us. Maythey quickly find a cure!
CommentHello everyone, I have contributed my story to the guest book before but I now have anemail address and would like to talk to other women with this terrible condition. I amonly 21 years old and have suffered from vulvodynia for 2 1/2 years. It all started withyeast and bacterial infections which started shortly after going on the birth controlpill. I have been diagnosed with HPV though I don't have any symptoms of it. I, like manyof you have been on every anti-fungal, anti-viral, and a lot of other medications that youcan think of. I unfortunetly had the surgery (the doctor removed my vestibular glands)last year. That was the worse mistake of my life. I am twice as bad now. I only did itbecause the doctor promised that I would be 50%-75% better. Wrong. Anyway my boyfriend hasstuck by me the whole time. It is so hard to be so young and yet not normal. I envy myfriends and every other healthy woman. This condition puts so much strain on arelationship and every other part of the womans life. Currently I am on Elavil. I'm goingto get checked for IC soon. My doctor (#15) tells me that approx. 70% of vulvodyniapatients have IC also. Well that's where I'm at right now. I would love to hear fromanyone that wants to talk about this condition, until then keep the faith and take care.
CommentHave you ever heard of getting Vulvodynia from an allergic reaction from IVP DYE andbedadine? I came out of an operating room this way. I Had nothing wrong with the vulvararea before the IVP DYE MY LIFE HAS BEEN DESTROY
CommentHi Trish: I've had IVP's done many times to locate kidney strones. Maybe there is aconnection to the dye and Vulvodynia. I've never thought about it. What are you doing nowto relieve the pain? E-mail me back if you'e like. Sue
CommentHi Trish: I've had IVP's done many times to locate kidney strones. Maybe there is aconnection to the dye and Vulvodynia. I've never thought about it. What are you doing nowto relieve the pain? E-mail me back if you'e like. Sue
CommentHi Sue the dr.s have me on pain med they help to some extent I WOULD RATHER BE DEADTHAN LIFE THIS WAY THERE IS NO LIFE LIVING LIKE THIS I HAVE LOST EVERTHING BECAUSE OF THIS
CommentDr.Glazer, i have read various articles about this condition i believe i may have. myconcern is that i've read about vaginal birth as a potential cure to the pain, but i wantto know what concerns you have about carrying a baby up to delivery for a woman under thiscondition... thanks for your time, Valerie Barton
CommentThis was my first input to the website, so now that I know how it works, I'd like toget more info from anyone. I am 23 and have only been married 6 months. I have not beendiagnosed for this condition yet, but I've been to 5 doctors in the last year who areconvinced it is yeast/bacterial infections that I'm experiencing. After reading materialfrom this website I am convinced there are answers out there for me--Thanks to all of youfor your personal stories that help me to relate to someone. I AM CURRENTLY LOOKING FOR AGYN WHO MAY SPECIALIZE IN THIS CONDITION SO I DON'T HAVE TO START OVER WITH ANOTHER DOCTORON MY HISTORY OF PROBLEMS. DOES ANYONE KNOW OF SOMEONE IN THE STATE OF GEORGIA (where ilive now)OR IN MISSOURI (where my hometown is)??????? I need help and haven't been able tofind a doctor who has ever heard of this before...as many of you also experienced. Thanksfor the help! Valerie
CommentDear Trish: I understand how you feel, but please don't give up hope. Keep in touchwith me and maybe we can give each other moral support. I didn't think I'd get bettereither, but I have. Has your Dr. suggested a Estrace cream or calcium citratessupplements. Write back. Sue
CommentMy suffering began in Aug. 98. I had vascular laser of the vulva in December 98. I amglad to report that I no longer have daily pain and burning. I still, however, have"contact pain". My doctor is recommending a vestibulectomy. He has lots ofexperience, and his success rate with this is above 90%. If you have had this done and itworked for you, please e-mail me. I'm really scared, but think this is my only chance tobe completely normal again.
CommentI am 24 years old and have been suffering from vulvodynia since I was about 15. Ifinally went to a doctor at age 17. Although I didn't find out what I was suffering fromuntil a few months ago. It worried me so much not knowing what was wrong with me. Myhusband was not very supportive at first, but has just now realized what I'm goingthrough. He still gripes alot, but not to the extent as before. I have tried a low oxlatediet and I have been taking calcium citrate, which help at times. Intercourse is stillextremely painful. I also have a lot of stomach pains that I am not sure if they arerelated. I did read that someone with this suffered from irritable bowel, which my doctorsaid I could have. If anyone knows more about some things I can do to treat this that hasworked for them, please e-mail me. I need all the help and information I can get.
CommentI really appreciate the personal comments you all have shared about your experiencesand treatments with vulvodynia. It is helpful to have someone to relate to and validate somany of the feelings I have experienced. My heart goes out to anyone who has suffered fromvulvodynia or vulvar vestibulitis. I have only noticed a few times someone has mentionedalternative treatments. I would like to strongly encourage anyone to check out otheroptions before resorting to the invasive medical treatments(surgery). I was very skepticalat first, but was desperate and my husband encouraged me to try acupuncture. It worked. Iam 99% better. Within a couple months, my vulvar pain is gone and I am able to have painfree intercourse. I would have never hope for such results, just some relief. I feelblessed and want to provide some hope that it can get better. Like I said before, you havenothing to loose with acupuncture, and I feel it was the only thing that worked after 21/2 years of every treatment out there(except the surgery which I had scheduled at onetime). If anyone wants to discuss what was involved with the acupuncture please write me.I truely relate to all of your stories and pray that you all will eventually find somerelief.
CommentI am 19 and have recently been diagnosed with vulvo- vestibulitis. About a year ago Icontracted herpes. Before the outbreak my sexual life was healthy, eversince I have hadthis terrible pain during sex to the point where sex is no longer possible. I am lucky Iguess-I only had to go to two doctors before being diagnosed. My current doctors remediesinclude applying cooking crisco topically, topical steroids, and then surgery. I am stillon the crisco option I have only been diagnosed for 2 weeks now but have had the pain forabout a year. I am hoping to find an alternative answer, I don't think I can handle thesurgery. I am also engaged and have been with him for about three years. It has put somestress on our relationship, but luckily, he tries to understand and is patient with me.Has anybody else heard of this crisco thing? If anybody has comments or wants to chatplease e-mail me. thanks.
CommentI AM FROM CLEAR LAKE, IOWA AND HAVE JUST BEEN DIAGNOSED WITH VULVAR VESTIBULITES. THEONLY RECOMENDATION FROM MY DOCTOR IS EVENTUALLY SURGERY. ARE THER ANY DOCOTRS IN MY AREAWHO CAN HELP WITH SOME OF YOUR SUGGESTIONS?
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CommentI have posted before but I had a few questions I was wondering if any of you couldanswer. I was wondering if anyone else that has vulvodynia has problems with theirnipples? In the past 9 months or so mine have been really irritated. I have asked mydoctor. The only thing she could think of is for me to change my bras or soaps. I havedone that. They appear normal except for tiny red dots. When my boyfriend touches them oreven the water from the shower they hurt and burn. Also, if anyone knows of a decentdoctor in the Kansas City area please let me know. I think yeast play a big role in mypersonal experience with vulvodynia. I'm on Elavil which makes me so tired all of thetime. Well, take care ladies and hang in there.
CommentI was finally diagnosed with vulvodynia today. I was so thankful just to know thatthere was a name for what I had and that someone else had suffered the same thing. I wasbeginning to think I was alone. My problem started a year and a half ago. I started havingsevere lower back pain, then started burning and stinging. I had vaginal burning andpainful urination. After three urologists and two gynecologists, an IVP, cat scan,ultrasound, bladder hydrastention, urethral dilation, bladder biopsies and antiobioticafter antiobiotic for bladder infections and yeast, I am finally diagnosed. I havevulvodynia. I was beginning to be very hopeful. My doctor started me on Elavil today, butfrom what I've read it may not cure me. I have sat and cried for the last hour. I amalmost 28 years old. I have been married for eight and a half years and my husband and Idesperately want to have a child. I also suffer from endometriosis. I want to seekfertility help but see no use since I can't even have intercourse because thisdebilitating disease. It is so depressing. I pray every day for relief. It is good to hearthat I am not alone. I have a very supportive husband, but I have felt that no oneunderstood what I have been suffering through the past months. Thanks for this opportunityto hear from others!
CommentThe website has been very interesting to read. I have not been officially beendiagnosed with vulvodynia but seems I have alot of the systems. I have been seeing a GYNfor the last year, right after I had a total hysterectomy. I have had vaginal dryness andvulvular redness for about the same time. Drs. have rearrange my hormone treatments, hadme on Diflucan, Flagyl, Boric Acid Suppositories and cortisone creams. Next step is to tryestrogen patches. Nothing seems to help the rawness. I also tried to change my diet. Asfar as vaginal dryness I was put on Estratest but after that does not seem to helpintercourse, after a short while I burn and I am in pain. Any suggestions, comments ????thanks
CommentI am looking for a doctor in Atlanta, GA and wonder if anyone out there knows of one.After reading all of these entries, I don't want to go from Dr. to Dr. I am being treatedwith the Dr. McKay/Emory protocol of Diflucan once a week. I have done the no sugar bitwhich really helped. I continue to burn. I do not believe I have VV, because I didn't havepain with the Q-tip test. I would love to hear from anyone with any info on Gyns,chiropractors, therapists,etc. in Atlanta. Thanks for the information contained here andplease add me to your list. PS I have read that one of the national groups is having aseminar here in June. I can't remember which one. Dr. Willems (?sp) from SanDiego will behere.
CommentI am looking for a doctor in Atlanta, GA and wonder if anyone out there knows of one.After reading all of these entries, I don't want to go from Dr. to Dr. I am being treatedwith the Dr. McKay/Emory protocol of Diflucan once a week. I have done the no sugar bitwhich really helped. I continue to burn. I do not believe I have VV, because I didn't havepain with the Q-tip test. I would love to hear from anyone with any info on Gyns,chiropractors, therapists,etc. in Atlanta. Thanks for the information contained here andplease add me to your list. PS I have read that one of the national groups is having aseminar here in June. I can't remember which one. Dr. Willems (?sp) from SanDiego will behere.
CommentHello, I am currently searching for a Dr. in the states of WI or MN that have some knowledgeor specialize in this disease. If you know of anyone, please e-mail me. I think this siteis wonderful. I'm also interested in chatting with others who have this disease so that Ican find out more information. Thank you. Shelley
CommentI did get to see a doctor who specializes in vulvar disorders. I have now beendiagnosed with early stages of vestibulitis. I also had an ultrasound for endometriosisand I am happy to say that my ultrasound was normal. I am now on a steroid cream and havebeen told that there is a 85% chance of this working for me. I just hope I fall into thispercentage. I just wanted to let everyone know that the doctor did not say that surgerywas the only option. If anyone needs to find a doctor in Chicago, I recommend Dr.Sebastian Faro. He seemed very hopeful that I will be cured. I am in much better spiritssince my first entry and I also wanted to thank those who responded to my entry. I wishthe best of luck to all of us.
CommentSomeone mentioned a seminar in June in the Atlanta area. Do you know what this is aboutDr.Glazer?? Where can I find more info on this? Thanks!
CommentI have Vulvodynia and am looking for a doctor in my area who knows about thiscondition. I am from South Central Kentucky, close to the Tennessee border. Wondering ifthere is one at Vanderbilt Hospital in Nashville, or maybe at Louisville. Your help isgreatly appreciated. Thanks!
CommentI am a Vulvodynia sufferer and also have a lot of lower back pain. I am wondering ifthis could be related. It seems that I may burn worse when my back hurts. After I havebeen on my feet a long time my back hurts more and I also burn worse. Could this beconnected? Does anyone else have back pain?
CommentWhat a blessing it was to find this website. Thanks, Dr. Glazer. My VVD is the resultof 18 months of chronic yeast infections secondary to a contaminated water supply. I wasfinally able to combat the yeast infections with Colloidal Silver...it worked like acharm, and then we dug a new well and I have had no yeast infections since. I have,however, had the ongoing symptoms of burning without the presence of actual yeast. Mydoctor has just graduated from med school and she says that VVD is not something that wastaught in depth...she happened across an article in her family practice magazine the dayafter I saw her...so we were able to make a diagnosis right away. She started me ontopical premarin cream, 0.625mg each morning, and DesOwen, a steroid cream, each evening.I really haven't had much luck with this, after three weeks. She also tried Diflucan twicea day for seven days, and I actually had pain-free times during that week. If you live insouthern Washington or Oregon, I'm told that Oregon Health Sciences University has docsthat specialize in the research and treatment of this miserable condition. I'm an RN andhave researched this without much luck. I am willing to try anything...I just got marriedin November. Oh, yea, my doc also started me on birth control pills, OrthoNovum777, toincrease the estrogen and help combat some of that "dry" feeling. I sympathize with you all, ladies. I know what it's like to dread having sex, and thensuffering for days after. My husband is extremely understanding, but, there comes apoint.... Thank you all for your candid input...it really does help to know I am not mental Take care, and good luck Judy K
CommentThe following site lists precise estimates of the oxalate content of some foods:
CommentI am soooooo happy I found this site, great many thanks to DR.Glazer!!!! Reding throuhgolder posts in the guest book I realized I am the "oldest". I know I havevulvodynia for about four, maybe even five yeras. It has become a part of my life I gotused to it, just do not think I "like" it. One thing which keeps puzzling me isthat about two years ago I was tranfserred abroad by my company. I was away from myhusband, my diet was probably the same, but I stopped taking birth control pills (figuredI'd have a rest from them). After more or less 2 months I was totally pain free, I feltALIVE again, I started having erotic thoughts... and than my husband come to visit me. He4stayed for a week, we enjoyed each other, than he left back home, than I come back home,still pain free and within a week of being back home: booom I had all full blownvulvodynia again. My Ddoctor prescribed Novocaine gel, which became the pilar of mymarriage. Currently I am on 100 mg of Diflucan every three days as try and see therapy.What was it that caused total ceasing of symptoms?? Any ideas, anyone?
CommentI am 27 years old and have suffered from vulvar vestibulitis for at least the pasteight years. Prior to having sexual intercourse, I was even unable to use tampons. Afterseveral years and about eight doctors I was diagnosed, but I have still not been able tofind any source of relief. I have tried numerous topical ointments and a low-oxalate dietwith no success. I have been married for almost six years and have probably had sex withmy husband less than 20 times. I have not had sex at all in the past two years and myhusband is about to the point of giving up. I don't want to give up my marriage and Iwould love to hear how some of you have managed to work through these problems. I'm alsolooking for a good doctor to work with in the San Diego area and also a good marriagecounselor to help us deal with these issues.
CommentHi! I'm hoping that some of you can help me with some information. I'm consideringhaving a vulvar vestibulectomy in the Fall. I have a terrific doctor who says that I am anexcellent candidate for the surgery since my pain is only during intercourse and is verylocalized (3-9 o'clock). In the past three years, I've tried many medications, both oraland topical, but with little relief. My doctor has nearly a 100% success rate with thissurgery, but I'm still very nervous. If you have had this surgery, could you please e-mailme with you experiences? In addition, my husband and I would like to start trying to getpregnant as soon as possible after the surgery. I'm curious how long it will be before wemight be able to have sex again. Any input would be greatly appreciated, especially ifyour symptoms were similar to mine. Thank you!
Commentfinally . . . after finding this site and diagnosing myself, my doc put me in touchwith a specialist that confirmed everything. i'm going to start with physical therapy andwill let you know how that is going. i just wanted to pass this on -i suffer with constantexternal burning and have found that refrigerated 99% aloe gel (from a health food store)is such a RELIEF. i use it 3-4x/day, especially at bedtime, and have found temporaryrelief from something that was tormenting me to death. the doc said vulvodynia is a veryrare disorder and i did the math - 2/10ths of 1 percent of american women suffer - a VERYSMALL percentage. this is one reason why we go from doc to doc with no answers. i am on apersonal crusade spreading the word (by FAX, phone, email) to san francisco bay area docs.hopefully other women will not end up on the nightmarish merry-go-round that is vulvodyniaand its related disorders. keep the faith ladies! we will prevail!
CommentHello all. I just found this website and was thrilled to discover this resource. Iwould also like to share my story. Is there anyone in the Anchorage, Alaska area that issuffering from vulvadynia and/or knows of a doctor I can see here????? I just moved hereand am having a bad flare up. Unfortunately this flare up has coincided with a longawaited miracle - I am finally pregnant after years of battling infertility!!! Although Iwas quite joyful with the news I am devasted that my symptons have increased!!! Along withcontinual vaginal burning, I also have burning in the pelvic/stomach area. Does anyonehave this symtpon??? I feel as though my insides are on fire!!!!!! I have noticed that mysymptons flare up during mid cycle and just prior to my period. In the past, once Istarted my period, I felt better. Well, I just found out about the pregnancy last week. Ifeel very premenstrual and am suffering incredibly at the moment. I am feeling so sad!!! Ihad gotten pregnant in 97 and actually felt better for the short time i was pregnant(sadly, I had an early miscarriage). It was always my hope that when I got pregnant again,this horrible pain would go away!!!!!! I have struggled so long to get pregnant and Idecided about a year and a half ago to "live with" the vulvadynia and focus onthe infertility. I did not want to be taken medications while I was trying to getpregnant. I had tried the anti-depressants, but had no luck. I also tried acupuncure, butfound no relief. Again, I was focused on getting pregnant and thought this would resolvethe vulvadynia!!! Now, I am horrified to find that it has made it worse and I never eventhought about the possiblity of a vaginal delivery causing more problems- now i am!!Someone mentioned the shooting pains down the thighs, I have experience that as well. TheMOST painful thing for me to do is SIT!!! Does anyone else feel this way??? It seems thatpressure on this area causes the burning to intensify. I actually do not experience a hugeincrease in pain during intercourse, and actually find it sometimes helps to divert thepain away (although I am usually sore afterwards) . The majority of sufferers seem to haveextremely painful intercourse----is there anyone out there who does not have this as amain sympton? And again, is there anyone out there that has experienced thepelvic/stomache area burning?? Please, if anyone can offer some advice or support. Please e-mail me. I am hystericallycrying while I type this!! I need help.
CommentHi! I wrote yesterday looking for input from anyone who has had the vestibulectomysurgery (especially if you were considered an excellent candidate), however, I didn't givemy complete e-mail address. Here it is above. Thank you again to anyone who can provide mewith some helpful information.
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CommentI am also suffering from this horrible condition. I've had this problem since lastyear. Symptoms have decreased over time. I just wanted to let everyone know that Irecently meet with a nurse practioner in Auburn, MA. I had my routine pap smear. She alsotook a ph level which was very high and abnormal. She said that could be the cause of myburning. My treatment was to add acidity in that area with a suppository once a week forapprox. 8 mths. Has anyone had there ph level tested. She claims most of the patients shesees with vulvadynia have very high alkaline (ph levels) which means the body cannot fightoff infections. Please e-mail if this type of treatment has helped you.
CommentI am looking for a doctor who is knowledgable about vulvadynia in Delaware? Can anyonehelp?
CommentDoes anybody no of a doctor in Perth Australia who treats vulva pain
CommentSound familiar??...itching around vagina...small tears... whitish discharge...worsensaround ovulation... irritation of skin around rectum... Sex is either terrible pain during(like skin rubbed raw) or burning afterwards. I don't even bother seeingdoctor--especially after some of the horror stories I've read. To be dismissed by anon-understanding, unsympathetic doctor after I draw up the courage to go would be morethan I could stand. My husband doesn't even know the depth of this misery. I soak in a hottub of water because it is comforting..but maybe that is causing more problems. It seemsthat everyone has different things that work for them. When I am not "suffering"I am in heaven. I have been having bouts of vaginal irritation for years. At first Ithought yeast infection but I know it isn't that.. After sex, there are small cuts ortears in the skin. I go from gold-bond powder dry it up to the a&d ointment keep itmoist. My husband is a saint to put up with me. It seems that I might as well keep tryingto doctor myself, because I refuse to let the medical establishment humiliate me as it hasothers. If this is in my head, why is my vagina so sore??? I'm new to this website, andhaven't read too many entries but would appreciate any words of advise anyone has--as longas it involves self-help measures that I can use. Seeing a doctor at this point is not anoption. Some say low oxalate diet, but then others are allergic to the food in a lowoxalate diet. How does a person know where to start? The one thing I know for certain isthat ovulation plays some part in my symptoms. Help me help myself!!!
CommentHello there. This problem doesn't exist for me thanklfully but for my younger sister.She's been with this terrible condition for the past 3 years. B4 this I've never heard ofvulvodynia. She has recently moved to Anchorage Alaska and is seeking a doctor. She hadrecently had a miscarraige and presently is pregant. She said she's so uncomfortable nowand me being in NJ I can't offer any help. She's so worried about being pregnant and notfeeling well, I wish I could offer her some comfort. I can't even imagine what she isfeeling.....sounds so terrible. Especially after reading all those letters. There has tobe help out there. If anyone know of anyone or place in Alaska please emailme@tweetypp@aol.com. God Bless All You Women out there with this terrible condition. ThankYou
CommentI have contributed to the guest book before. I have been to University of Michigan andam presently on Elavil. I have been feeling better, but not pain free. They don't promisethat, just that it might be helpful. I take 50mg. per day. Has anyone out there been onthis long term? It has been about 9 weeks and I think that I have peaked. I like the restof you pray daily for a cure from this nightmare. Why this happens I don't know, but I doknow that we can't give up. I was so depressed that I considered some awful things. I knownow that I have to hang on for the people that love and need me. I hope for all of oursakes that a cure is found. If anyone wants to talk or needs a friend that understandsplease get in touch as I know how you feel. Terry
CommentI was diagnosed 2 years ago with vulvadynia after being biopsied and frustrated by manydoctors telling me that it was all in my head. Now that I know what the problem is, I amtrying to deal with it. I have already tried a topical steroid (with absolutely noresults), chickened out of the steroid injections options and I am scheduled to havesurgery on June 10, 1999. CAN ANYONE GIVE MY ANY INFORMATION, POSITIVE OR NEGATIVE ON THESURGERY. It is the same one that was described on the show Human Body 2000 - a partialvulvectomy. I also have burning and itching which seem to originate deep inside thevaginal walls. I too broke my tailbone and had a pilonidal cyst removed in the area in1992. Any info. at all would make all the difference in the world to me. Thanks! Lissa
CommentHello everyone. I was re-reading some of the letters the other day and I had a questionfor Kiernan who posted in guestbook #6. I tried to e-mail you but your address must havechanged because my letter came back. If you read this I was wondering about the test youwere having to test for ureaplasma (which may be secreted from the bartholin gland). I hadnever heard of this and my doctor never mentioned it. Could you tell me how they test forit? How did your test turn out (if you don't mind sharing) and if it was positive whattreatment is available? I hope you have found some relief. I have another appointment thisafternoon with may gyn. I can't keep this up much longer so I hope I'm able to findsomething to make me feel "normal" soon. It is hard not knowing what to expectfrom one day to the next. Some days are bearable and some days just getting up is hard todo. If anyone reads this please send some positive thought my way. I'm so tired of runningto the doctors. I just want my life back. Thanks for listening again. ~Terry
CommentTo Terry who went to the University of Michigan; I tried to send you an e-mail but itcame back. I just wanted to say that I'm glad you didn't act out on your depression and Ihope the Elavil brings you great relief. I've never tried it. Write back if you want to"talk." Sue
CommentHello, I am looking for Gyn Leslie Sedownick could you please help me get a hold ofher? Also this web site has helped me a great deal. Dr Glazer was very helpfull and promptto give me the info i needed. Thankyou. Luv Corrine
CommentCould anyone tell me of a doctor that knows about vulvodynia and how to treat it in theNew Mexico area?
CommentI have be seeing my gyn for problems symptomatic of a yeast/urinary track infectionsfor over a year now. The symptoms cleared up, but recently returned. I keep gettingdiagnosed with either yeast, urinary track, or bacterial infections. Each time my testresults come back positive with slight traces of one of these infections. I take medicine,but the symptoms are still here. My gyn did mention that I may have vulvodynia, but hasn'tsuggested much in the way of treatment options. Lately I have had a lot of what feels like bladder pressure, slight burning, and afeeling of what I can best describe as a feeling of being stimulated. I have also noticedthat my skin condition has changed, I now have breakouts and my allergies have worsened. CAN ANYONE OFFER HELP OR ADVICE? I cant take this any more, this constant discomfort. I have a husband of six years now and lately we haven't had much of a sex . It's notthat sex has been painful, Its just that with these uncomfortable feelings its hard for meto get in the mood for sex. He has been very patient, but I know he misses our closeness. Also, does anyone have information of a specialist in the area of Delaware.
CommentHas anyone tried a new anti-depressant called Celexa (Citalopram)? My doctor just tookme off amitriptyline (elavil) because I hated the side effects, but I was only on 25mg/day, so I may not have given it a chance. Any comments on either drug, as well asneurontin would be appreciated. Thanks!
CommentI am writing this to Renee, who posted a comment a few days ago. I do not have ane-mail address so I will just talk to you here. You said you were scheduled for surgerysoon and are worried about the procedure and it's outcome. I have had a less invasivesurgery done a couple of years ago that I haven't seen mentioned by anyone else in theguestbook. It's called "vulvar fulgeration". My doctor is in Galveston, TX andis a member of a board of worldwide doctors looking for treatments and a cure forvulvadynia. Anyway, for the procedure you will be knocked out so you won't feel any of it.It involves using an electric needle to give the "trigger points" of the pain athird-degree burn, which in turn kills the nerves that are causing the pain. I know itdoesn't sound pleasant, but to me it doesn't sound as painful as having the vulvectomydone to remove the whole affected area. I am currently taking 75 mg ot Elavil a day, butthe "fulgeration" got rid of about 85% of the pain. The doctor said I had about12 of the trigger points and now I only have about 3-4 of them. The recovery time ispretty short so you are only feeling pain afterwards for about a week which is muchshorter than the other surgery. It takes about 2 months before you will know if it hasworked or not. I had the surgery done two times and it has helped me tremendously. Well, Ijust thought I would give you and anyone else who was interested an alternate treatmentthat could be tried prior to the other major surgery. If anyone is interested in thissurgery just write in the guestbook to let me know and I will give you my doctor's nameand phone number.
CommentInterested in corresponding with another sufferer of vulvodynia and vulvar vestibulitisdue to pudendal neuropathy or pudendal neuralgia. Have suffered for 4 years-triedeverything,creams, medications, nerve blocks, trigger point injections, e stim etc. etc.No idea what caused it. Suddenly had the horrible burning feeling like there was a flamethrower inside me. Has anyone ever had the sacral stimulator implant and if so was itsuccessful? Also curious as to whether biofeedback would help for pudendal neuropathy.Been in physical therapy for 3 years for piriformis syndrome, levator spasm, low backpain, irritable bladder etc. So far physical therapy seems to help the most. Burning painis constant and unrelenting, sitting, standing, walking, any physical contact aredreadful. Will not give in to this pain, will continue to search for cure to regain mylife again. My heart goes out to all fellow sufferers. Thank you for this website it helpsus to know there are others who know what it is like.
CommentHello again. I just wanted to thank Kiernan for getting back to me and to Sue for herwords of encouragement before my doctors app. the other day. He had another look anddidn't think the skin looked quite right so he did 2 biopsies. The results should be backin about two weeks so I'm keeping my fingers crossed that something specific will show upand that it can be treated. I'm trying not to get too optimistic but at least it gives mea little hope for the next few weeks. If I get any good news I'll let you all know. ~Terry
CommentI am still making the rounds with doctors trying to determine my problem. I have seenorthopedist for "inflammation around the tail bone" and proctologist forhemmrhoids, and had a complete physical with my internists. Next step is OB-GYN. But Itruly think this may be my problem. If anyone knows an OB-GYN in the Atlanta area thatcould treat this, please let me know. Thanks. And you will all be in my prayers.
CommentI have been married for 18 years and have always had painful intercourse. This site hasso much information. I was first able to put a name to this condition by watching BodyHuman 2000 in which a woman described exactly the feeling I had during intercourse.Putting a name to this has dramatically helped in my own reseach ability and I think givessome credibility to it being a real condition instead of just a girl thing.
CommentI have signed in before but have new information that I wanted to share. After muchresearch I have found a huge connection between yeast and Vulvodynia. I visited airidologist today, this is someone who reads your eyes and treats you homeopathically.This is after seeing 6 doctors over a course of one and a half years, and having multipletests done that has led nowhere. Anyway, this iridologist told me that my eyes were veryhazy and white, this meant that I have a lot of yeast. I already knew there was aconnection and she didn't even know I had Vulvodynia. When I told her that I had beendiagnosed with Vulvodynia she said that yeast was the cause of my problem. She suggestedthat I buy and read "The Yeast Connection", the author's last name is Crooke. Ibought it today and have skimmed through it and already have been amazed at the symptomsyeast can cause. It gets into your body and causes many problems. I suffer from almost allof them, symptoms that I would have never thought to be related. This book also listsVulvodynia as a result of yeast. She also is having me begin a yeast cleansing. I am tobegin taking the herbs Enzydophilus and Candida Formula. She said this will cleanse mybody of the yeast. I only have to take them for 2 months. I will be adding other things asI go along. I also have to go on a yeast cleansing diet. I am very hopeful that this willwork. I thought it was very interesting and some of you may want to give it a try. Itcan't hurt and I am desperate. I will post my results in a couple of months. E-mail me ifyou have any questions and get the book. It only costs $14.95. It has a lot of helpfulinformation.
CommentI am so thankful for finding this site. My husband and I have not been able to haveintercourse without my being in agony for over a year now and I had been to 2 differentdoctors who had no idea what was wrong. I really had begun to think it was all in my headuntil coming here and through this site I found a doctor near me and will be going to seehim in three months. A long time away but I feel hope for the first time in so long. Myhusband and I have been married for almost 11 years and have 4 kids. He was so kind tohave a vasectomy so we didn't have to worry and now this but just maybe it will now getbetter. Thanks for being here!!
CommentI have been trying to get into the chat room now for over 20 minutes and I am justgoing around and around. Could someone please email me back again and help me please. Isuffer from Vulvodynia and would really like to chat with someone. Thank you Kelly Corry
CommentHello, I have had vulvodynia for about 3 years. I'm sure it will come as some relief toother suffers to know that my illness is much under control. I wanted to share with yousome of the things i've done over the past that may have helped me. I do not consume itemsthat have a high oxylate content, except on occasion. I have been eating a pretty healtydiet which includes "Power Bars". No, I'm not telling you that Power Bars curedme, but I feel like something they contain my have helped. Go figure. :-)I cut out mymorning Orange Jucie, and replaced Regular Cola with Diet. I also wash my clothing,including pantyhose with Cheer and run throug the rinse twice. Wash you clothing and bathtowel after each use!I do not use fabric softner. I DO NOT USE pads with dry weave. Thesethings will give me a flare within hours. Tampex tampons and Kotek pads seem to workwonderfully. I had a period of nearly a year where I was almost 100% pain/symptom free. Ideveloped spiritually durning my dealing with the disease which lead to relief of ongoingGastrointestinal problems. I found that prepared Aloe Vera Gel(it is specially made fordrinking) works wonders for developing ulcers! I am a new woman, since i've had thisillness. Sure, I wish i never had it but on the bright side....it made me work on gettingstrees out of my life. When people meet me they would never guess that I'm only 24. I havebeen able to work full time for nearly a year, without taking any sick days related toVulvodynia. I've even told a few friends that i suffer from the disease. Sex becomes a BIGdeal when your dealing with VV! I didn't think about how much people pry into your sexlife and base the quanity of sex on the quality of the relationship. There are plenty ofgood relationships out there, having sex every night doesn't mean the relationship isgreat! There are people out there who are looking for a SOUL MATE and not a bed buddy. Ifyou make a spiritual connection with another soul, you've made the greatest connectionthat can be made. Good Luck to you all! God Bless, MS
CommentThis is in response to Wondering's comments of 4/12/99. I have had vulvodynia foralmost 3 years. I want to warn all women to be careful using vibrators. You can causepermanent damage and vulvodynia this way. I never had any genital pain until Iinadvertently damaged the clitoral nerve while using a vibrator. (At least that is what Ithink happened.) I'd used a vibrator all my life, but had been using a it more in theseveral months preceding (about 3X a month, not just 1X a month). Why? I just feltsexier...my husband and I had some of our best sex in the few months before I hurt myself.My clitoris felt irritated the last few times I used a vibrator, but I didn't think muchabout it as I was still able to achieve orgasm despite the irritation. That was my firstmistake. Then the very last time I used a vibrator, I got careless, pressed too hard onthe clitoris and felt a horrible, sharp pain. I believe this was when I damaged (not justirritated) the main nerve in the clitoris by trapping it against the pubic bone. Theensuing months were a nightmare: tingling, then gradually worsening itching followed bycopious secretions from the glands in the clitoral area; hypersensitivity to touch whichstill persists; then several months of an undiagnosed yeast infection which caused theclitoral hood/clitoris to swell 2-3X normal size; then a round of steroid cream which myold gyn prescribed. The cream almost finished me off, it was so painful. That's when Ideveloped shooting pains up into the womb and pains going down the insides of my thighs.Then I was put on 150 mg. of the antidepressant Elmiron. This caused major acid problemsin my stomach and I had to abandon that avenue (I am now on an acid blocker and havestomach problems as a result). In the past year, I have had to give up vigorous exercisebut somehow manage 2X/week on a stair machine, if I am careful to keep my legs apart onthe pedals. I can't wear underwear, hose, anything restrictive. Ordinary sitting andwalking is difficult. My new gyn thinks I may have interstitial cystitis and is treatingme for it: recent symptoms in the last 4 months include twinges and needle stabs on thefront of my abdomen. (I doubt I have cystitis but will not allow a cystoscopy for fear oftriggering a relapse.) I have also developed vaginismus because of all the pain. Mostfrightening for me at present is I have had sensations of burning around the rectum thispast week. I am devastated and terrified by this new development. I am seeing a therapistin hopes I can learn how to cope with this condition. The remorse and guilt I feel forhaving caused this problem are enormous. I am also looking into biofeedback/meditation.(My therapist, who knows my whole story including the use of the vibrator, thinks stressis contributing to my relapses and new symptoms.) I have not told my gyn about use of thevibrator partly because of the embarassment and partly because I don't see how any doctorcan fix a damaged nerve. At the suggestion of my gyn, I may explore an epidural with aninjected steroid in hopes it may break the cycle of pain. Does anyone know anything aboutthis? I think at this point, my only hope is to reprioritize my life and reduce stress,get enough sleep, exercise carefully, and look into the mind/body connection to reduce thevaginismus if nothing else. I still can't believe this has happened to me and howdrastically it's changed my entire life. I have to learn to accept the fact that I willnever be normal and must somehow learn to manage (not be managed by) my vulvodynia. Ithank god that my husband loves me and only wants me to be pain free (sex is a thing ofthe past). I only pray that I will stabilize and that the burning will subside and notspread. Bless all of you women out there with this condition, regardless of its cause. Mayyou find the strength to find some quality of life and respite from the pain.
CommentThis is an addendum to the comments I just posted. I erred when I mentioned theantidepressant Elmiron. I meant ELAVIL. If you are considering using Elavil or anytricyclic antidepressant to control vulvodynia pain, monitor yourself for adversereactions. I was only on Elavil 3 months last spring but my stomach has never been thesame since. Before Elavil, I had no stomach problems whatsoever. The gynecologist who putme on Elavil told me the drug was not the cause of my stomach problems, so I stayed onElavil when I should have stopped it. If you experience any feeling of fullness betweenthe rib cage or burning in the stomach or esophagus, see a gastroenterologist. Like me,you may be unable to tolerate this class of drugs.
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CommentMabe one way we can get the word out is by writing NBC to do a show on Vulvodynia.Please write. Story Suggestions Dateline NBC Room 510 30 Rockefeller Plaza New York, NewYork 10112
CommentHello! I was diagnosed with vulvodynia two and half years ago. As all of you canrelate, life just hasn't been the same, always constantly in pain. I've tried many, manyforms of treatment and the only thing that worked to dull the pain was the herb, HawaiianNoni Fruit. Recently, I moved to Seattle from Indiana and came across a doctor who specializes invulvodynia and has cured all but one of her patients. She's in the process of treating meand says I'll be pain free within three months. I can't express my emotions...anger forthe doctors in Indiana who didn't care enough to help and absolute adoration for thedoctor who is now helping to cure me. If you're interested in contacting this doctor,please email me and I'll give you the information. And just so you know, she's a dermatologist! What she says about vulvodynia makesperfect sense. Hoping to solve this painful mystery - Jennifer
CommentHello! I was diagnosed with vulvodynia two and half years ago. As all of you canrelate, life just hasn't been the same, always constantly in pain. I've tried many, manyforms of treatment and the only thing that worked to dull the pain was the herb, HawaiianNoni Fruit. Recently, I moved to Seattle from Indiana and came across a doctor who specializes invulvodynia and has cured all but one of her patients. She's in the process of treating meand says I'll be pain free within three months. I can't express my emotions...anger forthe doctors in Indiana who didn't care enough to help and absolute adoration for thedoctor who is now helping to cure me. If you're interested in contacting this doctor,please email me and I'll give you the information. And just so you know, she's a dermatologist! What she says about vulvodynia makesperfect sense. Hoping to solve this painful mystery - Jennifer
CommentMESSAGE FROM A PAST VULVODYNIA SUFFERER - STOP TAKING ANTIBOTICS. I don't know where tostart, but my heart bleeds for all of you. I know exactly what you are going through,where you've been and that you will recover from this. I am now OVER my vulvodynia, Yes,it is GONE. My story is the same as all of yours and when I finally found that my burning,stinging, swelling, irritating, stretching, throbbing symptoms had a name, I cried. I amnot going to bore you all with my long story, of finding Dr's, treatments, a failedmarriage, the re-uniting after 25 years with my high school sweetheart, the love of mylife. One day, now I am well, I'm going to write a book!! But you want answers. Now I amwell, I am angry. Like all of you I was suicidal, at the lowest point in my life and now Icouldn't be happier. But, yes, I am still angry. Like you I was so intent on getting well,that was all I could focus on. But girls, what about the CAUSE of this condition. We areso intent on getting better, we have lost sight of why this happened to us, and how tostop it happening, and destroying other women's lives. My vulvodynia was caused by anallergic reaction to Doryx - a tetracycline antibiotic taken as an anti-marial for anoverseas trip. My vulvodynia started in 1995, when I was 35 years old. It lastedapproximately 2 1/2 years and I have been fine for 18 months. I have just celebrated my40th birthday, and I mean celebrated!! I found a Dr. here in Australia, who specialised inVulvodynia. She told me that a lot of her patients had taken Doryx and that the only thing(aside from taking anti-depressants, which I refused, because of the likely side-effects)was TIME. She said that "it was a 1 step forward, 2 steps back recovery and that thefirst time a had a good day, then the next I would have 2. Then it would be 3 and then 4and then so on. And she couldn't have been more correct. I started to have months where Iwould have good weeks, yes it would come back, but then I would have good weeks again.Until the good weeks turned into months, and the months now into years. She told me if Itook another Doryx I would be back to square one, so I do fear an infection of some sort,I would rather die before I let an antibiotic pass my lips. I stopped creams, lotions andpotions. I did notice that when my body suffered the horrific allergic reaction, thatwhatever things I was eating around that time, seemed to trigger and attack, so I avoidedthem. But now, I can eat anything I want. She gave me a card that said "This is justa passing attack, I will have more good days" which I would read and believe. Thereis a lot to be said for positive thinking and stressing about this condition does make itworse. I also had the same symptoms in my mouth, which also led me to believe that it wasan allergic reaction. My tongue burnt for a year and slowly but surely, just like my vulvathese symptoms left. She told me that it was O.K. to be paranoid about medications afterwhat I had been through. I go weeks without thinking about vulvodynia and the mental scarsare fading. My adivce, be kind to your bodies, let time heal the wounds, both phsyical andemotional, be patient, cherish your good days, think positive, take a deep breath, andremember what my Dr. told me "You WILL get over this, I guarantee it".
CommentI didn't see many comments coming from Australia so I thought I'd add my story, whichhad a GOOD ENDING. I suffered vulva vestibulitis for approximatley 8 years, with symptoms getting worseand worse, ending in a situation where I was unable to continue to have sex - extremepain. I saw a top Sydney gyn. at one point who told me it was purely psychological. Priorto reaching the point where I was unable to have sex, I had two children, through normaldeliveries. I was in a good relationship and I thought that surely after having a baby,things would be better. Finally I was diagnosed with a condition: vulva vestibulitis. Iwas very happy- it wasn't 'all in my head' at all. Bad news though, no effective treatmentavailable. I decided not to give up. I researched and came up with a doctor who seespatients in Sydney and Adelaide. After 8 months of treatment, I can say with certainty,that I NO LONGER have vulva vestibulitis. The treatment I received was based on use of anEMG. Since my cure, I have the sex life I want, and have even started using a diaphram(contractive). I could never have dreamt of using this 12 months ago. My message is not togive up. An Australians reading this message are welcome to contact me for furtherinformation.
CommentI have a question for anyone that has taken Elavil for this condition. I was referredto University of Michigan and there was placed on Elavil after they could find no organiccause for the condition. I started on 25mg per day and advanced to 50mg per day. Myquestion is has anyone out there found relief from Elavil and how much did they need tofind acceptable relief from the itching and stinging? I go back to the clinic in June andI have been thinking that I am not taking as much as I need. I could have gone to 100mgbut held off, because I want to take as little as possible to achieve relief. If you haveany information on this I would be grateful.
CommentMy gynecologist just started me on neurontin (gabapentin) for my vulvodynia, which I'vehad for some time. Like all of you, I've been through some very rough patches. They'reprobably not over yet. Recent studies show that neurontin or gabapentin has been helpfulin treating peripheral neuropathies, such as shingles, and pain from diabetes: see theJournal of the American Medical Association, 1998;280: 1831-1836. It seems reasonable thatneurontin would also reduce pain from vulvodynia, which is just another neuropathy. It'stoo soon to tell, but I'll post my results after enough time has passed. This drug iscommonly used for treating epilepsy seizures. My gynecologist also wants to monitor myblood pressure these first weeks, as the drug can affect the blood pressure. Has anyoneelse used neurontin or had bad side effects from it? Good luck to everyone out there."In the midst of winter, I discover the invincible summer within me" (AlbertCamus).
CommentI wish I had more time to read all of the entries in this guestbook. It's so comfortingto see that I'm not the only person with these problems but yet so upsetting to see allthe pain we are all in. My problem began about 2 years ago. Like a lot of you I thought Ihad a yeast infection but Monistat didn't do the trick. I was diagnosed with BacterialVaginosis by my dr. and took MetroGel but continued itching. I took several rounds ofthese Flagyl, metrogel drugs but continued with problems. It finally went away after a fewmonths and stayed away for about 3-4 months but then came back again. It's been constantsince. I have itching only sometimes now. Mostly it's just pain. I read in another entrythat someone had pain in her legs. I also have that some days. The pain runs down thebacks of my thighs. I've been on antibiotics repeatedly since I was about 13 for streptthroat and UTIs. I was diagnosed with Interstitial Cystitis in 1995 for which I've had abladder distension and took DMSO treatments. I have been catherized so many times I wonderif all of the trauma from these catherizations have caused my problems. The antibioticshave caused the good bacteria levels in my body to be decreased. What could have causedthis? Who knows. I try to watch what I eat and not eat a lot of sugar but I do eat sugarsometimes mostly on weekends and not a whole lot. I don't know if this even helps. I can'tseem to tell. Sometimes a food will not irritate my symptoms and sometimes the same foodwill. Sometimes I'm really stressed out and I don't hurt. Sometimes I'm stressed and I do.Other times I'm calm and still hurt. I have a stressful job and feel this may be acontributing factor but I don't think I could stay at home. I get bored easily lately andthink I'm just a person that needs something to do all the time. I don't have children soit's not like I would have a lot to do at home if I didn't have a job. I went to see adoctor in Falls Church, VA last week who studied under Maria Turner, MD at the NationalInstitute of Health in Bethesda, MD. I really liked him, a very nice man. (WilliamSawchuk) He wants me to take Elavil for the vulvodynia. I've taken it before when I washaving problems sleeping and it also helped my bladder disease, IC. It put my bladderproblems in remission for about 14 months but as soon as I came off 100mg and began takingless my bladder symptoms returned. I actually took the generic Amitriptyline. I stoppedtaking it because it really irritated my stomach and gave me alternating bouts ofconstipation and diarrhea. That's almost unbearable too when you don't know when or whereyour stomach is going to start giving you problems. I'm very hesitant to begin taking thisdrug again because of this side effect that I don't want. Does anyone have any suggestionsfor me? Either to relieve the stomach problems or an alternative drug. I think I'm goingto contact Dr. Glazer because a drug-free treatment really sounds great, especially withthe success rates. Well, that's my story. I think I really just rambled on but when I readother stories that sound like problems I'm having, I feel a little better and not so outthere. I don't have any friends with either of my diseases, IC or vulvodynia. I'm suremost of you don't either. It's kind of isolating sometimes as you all know. All of myfriends are very understanding but it's hard to really know what someone is going throughwhen you have no idea how that person feels. I don't feel like I'm alone after ready theseentries. I hope some of you will feel the same after reading my entry. Let's keep prayingfor a cure or at least an effective treatment and keep praying for each other. :-) Pleasefeel free to email me if you want to discuss our problem. I get a lot of junk mail soreference vulvodynia if you write to me so I won't delete it. Thanks !!!!! Dawn
Commenthi I am looking to find a doctor in Ottawa,Ontario Canada I was pregnant for my fithchild every thing went fine until it was time for the placenta to come out,it took 25 minsand that was with the intern fighting and pulling to get it out.Anyway i was hemoragingfor nine weeks and I had retained placenta for 9 weeks and had to be rushed to surgeryafter convincing my doctor that there was something wrong when they decided to do aninternal ultrasound to discover retained placenta. Now I have another problem vulvodyniasex is unbearable not to mention very frustrating for my spouse I have seen 5 specialistso far and no one knows what to do,I am now trying antidepressants called amitriptyline10mg 3 before bedtime,I have 5 beautiful daughters not to mention one that is a specialneeds child I do not need to be on antidepressants for the rest of my life I am only 34years old and my children need me,I would appreciate any feed back from any one pleasefeel free to email me thank you kathy!
Commentsorry everyone I posted a letter but realized the spelling in my email address wasincorrect it is now corrected sorry about this kathy!
Commentcorrect email address sorry theteck@home.com thanks
Commentcorrect email address sorry theteck@home.com thanks
Commentcorrect email address sorry theteck@home.com thanks
Commentcorrect email address sorry theteck@home.com thanks
CommentI have had vulvar vestibulitis for years now. Although, I didn't know that's what itwas until a year ago. Up until then, I have seen many doctors who diagnosed my conditionas "vaginismus". I could not believe this problem was in my head. I was feelingreal pain! A year ago, I saw a specialist in Palo Alto, CA who finally diagnosed myproblem as vular vestibulities syndrome and recommended laparoscopy surgery. I tried toget a referral from my gynecologist but he was very concerned and didn't recommend I gothrough with this procedure. He felt the success right was much lower than I was led tobelieve by the specialist. This, of course, scared me off. My marriage has sufferedtremendously over this and, in fact, my husband and I are now separated. I desperatelywant to do something about this. I would be interested in knowing if anyone has had thissurgery and what the outcome was. I am also interested in finding someone who specializesin biofeedback in the San Francisco Bay Area. Thank you!
CommentSome words of encouragement for many... I have been treated by Dr. Glazer for the past5 months, and have had an amazing results with the pelvic muscle rehabilitation. I'm atthe point now where there is almost no pain at all!
CommentI am hurting SO BAD tonight--i was really thinking of dying as the only way out ofpain. After reading FAQ, so many things sounded so familiar--it gave me hope. I would alsolike to post the names of 2 good drs. i know of and of 1 dr. who, I believe, made my pain"chronic" with laser "surgery"-I hope I can find where to postthem..Thanks!
CommentThis is the only place for me to vent about this horrible syndrome. To me Dr. Glazer ison the highest of pedestals. I hope he knows what this website means to people who have nowhere to turn. It's hard to deal anymore, the emotional tolls are kicking in and I don'tknow what to do.
CommentDoes anyone know of a support group in Utah?? If so please let me know! Thanks.
CommentI am 27 years old and started experiencing symptoms six months ago. I experience painduring and after intercourse - a horrible burning pain. And it is especially painful whenI uriniate. This problem has negatively affected my relationship. My partner and I aregood at communicating but I'm still hurting emotionally because of it. He is hesitant toinitiate sex. Because of my physical pain we are sexually intimate less and less which onmany levels makes me feel insecure about our relationship. I echo what one woman saidabove, about wanting to be a normal 24 year old. Actually, I am somewhat relieved to find other sufferers here at this website that arein my age group. (Research articles that I've been reading link this condition topost-menopausel women.) Like all of you I went from doctor to doctor until finally agynecolegist at my university's health center diagnosed it as vulvodynia. She prescribedXylocaine and Amino-cerv but I didn't respond to these. (I had my hopes set on thexylocaine but somehow the pain just kept winning in the end.) Finally, my gynecologist prescribed nortryptyline, an anti-depressant, and alsoreferred me to a specialist. His name is Benson Horowitz MD and his main office is inHartford CT (USA). He provided me with some answers to the causes of my condition. Myvulvodynia was a symptom actually of a genetic defect, that (quoting from an article hewrote in the Winter 1998 issue of the NVA News) "vulvodynia is due to a specificgenetic defect in the production of norepinephrine, resulting in a disturbance of theadrenergic autonomic nervous system." This basically means that since since my braindoes not produce enough of this chemical, I don't respond to stress in a normal way. Whenthings get hairy I don't produce enough norepinephrine to handle the shock, I infer.(Maybe it's sort of like being an allergy sufferer, my body in a perpetual state of falsealarm.) In our initial conversation before he examined me and after he had viewed mymedical history, he asked if I had experienced any of the following conditions: migraines,sleep disturbances ("usually characterized by early awakening") anxiety, panicattacks, fatigue or chronic fatigue syndrome, irritable bowel syndrome,fibromyalgia,bladder spasms... I, along with the rest of my family, am plagued by migraine headacheswhich are pretty much only attributed to stress (after experiencing strong emotions, poordiet, or lack of sleep). I have been diagnosed with irritable bowel syndrome. He links allof these as symptoms of this genetic defect. Okay.... I am a stress case. This vulvodynia has actually made me come out of thecloset about this. Over this past year I was working two jobs while being a full timestudent. Simply, I was overdoing it and not taking care of myself. I actually had panicattacks even though I didn't realize it (all the sudden in the midst of my day of rushingaround I'd stop and realize that my heart was beating extra fast and I was short ofbreath). To carry on further (I hope your still with me) personally I have begun to linkvulvodynia with my love life. In retrospect I realize that whenever I was unhappy in arelationship I developed this pain that I now know is vulvodynia. I am particularlyinsecure in my current relationship (I love him desperately but I fear time mighteventually erode our relationship). Wow, getting very personal here with what I'm feeling,but I hope that other's might benefit from my story. Reading through this guest book Ihave noticed that quite a few women have linked stress with vulvodynia, that they noticetheir condition gets worse when they are stressed out. Now I have seen a doctor who seemsto have real medical evidence that vulvodynia can be a symptom of a neurological problem.Maybe our condition is making up look deeper into our lives. Maybe our bodies are soundingof an alarm that things are not quite right in our lives and that we need to take bettercare of ourselves. I'm interested if anyone else has been prescribed nortryptyline and what theirexperience has been. I've been on it for a month now and have not noticed much difference.But I was told that it takes at least a month to notice any changes, so I'm just going towait out another month. I'm considering physical therapy and maybe mental therapy tofigure out ways to compensate for my apparent faulty mental wiring. Anyway, good luck to all of you women. Sigh. It is good that we can share our words andemotions. I'd be glad to hear from anyone.
CommentATTENTION WOMEN: Please do not take any antidepressant drugs until reading the book “ToxicPsychiatry,” by Peter Breggin M.D. These drugs are very damaging and your doctor willmost often deny this. If your doctor tells you that you have a genetic defect and/orchemical imbalance, do not believe it. Please do not believe it! There are no tests forthese supposed genetic defects as the Human Genome Project will not be complete until theyear 2003. The supposed genetics of mental illness and now vestibulitis, fibromyalgia,etc. is being pushed by the multbillion-dollar pharmaceutical companies. Guess why?Obviously money. Prozac, for example brings in over 6 million dollars a day. Even ifvestibulitis proves one day to have a genetic component, I guarantee you that psychiatricdrugs will not be the treatment. Also, just because depression runs in your family doesnot mean that you have a so called genetic depression. Think about it. If your grandmotherwas very depressed because of painful events that were going on in her life she probablymodeled this behavior around your mother who learned to be depressed. You’re motherthan modeled this for you, etc. This is just an example virtually denied by doctors whowould rather push drugs and people who want the easy way out. The fact is depression isoften learned or simply a NORMAL reaction to painful life events such as vestibulitis.Until there’s a cure please be good to yourself by reading the book mentioned at thetop of this page. Also, try visiting Breggins website at www.breggin.com. Knowledge ispower.
CommentI have had vulvodynia for 4 years now. After trying drugs, diet, homeopathy,acupuncture, therapy, and ointments I found Integrated Awareness. My teacher is LindaTumey in Mill Valley, California. I have been seeing Linda for one year and my discomforthas greatly subsided. I will have as much as 2-3 months completely pain free, and if thediscomfort comes back I go see Linda for a session or 2 and I always feelbetter.Integrated Awareness is a combination of therapy and bodywork. The imporovement inmy well being has been remarkable. Linda can be reached at #415-381-1448. For those of youwho have tried everything else and are still suffering I encourage you to call Linda. Shecan help you find an Integrated Awareness teacher in your area if you do not live closeby. Corragio. JoAnn
CommentDear Dr. Glazer, I am a 23 year old women and just diagnosed with Vulvar Vestibulitis.I have been struggling with infections and have been misdiagnosed for years, can youassist me and offer any guidance as to handling this disease and living with it? Stacy Topper
CommentI am 25 yrs. old and have been suffering from VVS for 4 years. I experience great painwith any vaginal penetration. The floor of my vaginal wall actually tears when attemptingintercourse. I have read many of the guestbook entries, but I hadn't read that anyone hasexperienced tearing. I have been married almost 2 yrs. and my husband and I would like tostart a family within the next year, but we have not been able to have sex in MANY months.I have been seeing an OBGYN for 1 and a half years. He perscribed Clobetasol Cream 0.5%and no sex for at least six weeks. Initially, the treatment worked. I had ONE painfreesexual experience. I remembering laying with my husband and crying (tears of joy!) I amnow having horrible reactions to the Clobetasol Cream (raw,painful swelling of my labiaminora) I stopped using the cream and am now looking at other options. I am thankful thatmy pain is only experienced with penetration, but like all of you would like to enjoy ahealthy sexual relationship with my husband. If anyone has experienced tearing of theirvaginal wall, please let me know. Thank you.
CommentI am currently expecting my first child and plan on a vaginal delivery. The thought ofthe pain and healing from a n episiotomy on top of vulvadynia is quite scary. Can yousuggest anything that may make recovery easier.
CommentHi I don't have an Email address so I need to be answered on this page if that ispossible. Well like most of the rest of you I have been diagnosed with Vuldonia andvestibulitis about 1 1/2 years ago. I have just turned 30 (which I have always been toldis a womans prime). I have been on 30 mg. of desiprimene for about 6 months to calm dowmthe vuldonia before I could set up surgery for the vestibulitis. I am from Boston and thedoctor I found 6 months ago through Dr. Glazier is great. He is very optimistic so I amalso trying to be. I am happily married though needless to say this problem puts atremendous strain on my marriage. So anyway, after 6 months I am schedualed for surgerynext week. My doctor says i have a 75% chance of full recovery from the vestibulitis. WhatI am looking for is anyone out there who has both vestibulitis and vuldonia and had thesurgery. Did it help? Although the vudonia has gotten better on the meds I sill havedryness and some iching. Did the surgery help stop this? I would just like to know of somesuccess stries with the surgery since my doctor is so optomistic. If anyone can help meplease write back on this web page and I will check in each day. Thanks and I will keep intouch to let people know how things tourn out for me. SIncerely, Kelly
CommentHi Kelly, I had a vestibulectomy in February of '97. We had to wait three months until we couldhave intercourse again after the procedure. When we did it was much improved, but I wasstill experiencing about 20% of pain. I returned to my vulvar specialist in January ofthis year. She said that my pelvic muscles were spasming and she sent me to an OT forbiofeedback. After 8 weeks of the biofeedback I was totally pain free during intercourse.In the last 2 months my husband and I have returned to having a normal, healthy, andactive sex life once again. You said that you still experience some vulvar itching.Vulvodynia isn't actually a disease itself, it is just a term for a burning or chronicallyirritated vulva. The challenge to physicians and patients is determining the cause of thisproblem. There are many different conditions that can cause vulvodynia. Some of the morecommon are: (these came from my specialist hand out): 1. Vulvar Vestibulitis 2. Yeast vaginitis 3. STD's 4. Vulvar dystrophies 5. SkinDisorders 6. Contact Dermatitis In order to help relieve your daily discomfort, your doctors need to determine what iscausing your vulvodynia. For me it was a skin disorder called Lichen Schlerosis. My doctortreats it with topical steroids and an estrogen cream. Whenever my vulvar skin starts toburn I just go on the medication until it stops. For everyone else who also reads this,you don't have to suffer needlessly. There is hope for a 100% pain free life. You justhave to find someone who knows what they are looking for and how to treat it. If anyonelives near Wisconsin or would like the name of a wonderful doctor, just email me. I amwilling to help. of things. It can be caused by
CommentThanks to everyone for your courage and honesty in sharing. I wonder if anyone has someinsight into my experience. I had recurring itching for three years after intercourse, butnever ever had pain until my Doctor told me to stop using yeast creams and use topicalcortozone. After three days of use I developed horrific pain and have been in pain for 6months now. Anyone experienced this or found a way to help this problem. Thank you and godbless all of you. Maureen
CommentI hope someone can lend some advice. I too have experienced the same symptoms asdescribed by the many women on this site. I am a 28 year old,full time working mother oftwo. I recently became engaged this past Christmas. My fiancee is a wonderful man and hasbeen very understanding through all of this nonsense. It seems I have always been plaguedwith recurrent yeast and bacterial infections. I also suffer from sinus problems. Sowhenever I'd treat a sinus infection,I'd get a yeast infection in return! Then,I'd treatthe yeast infection and sometimes end up with a bacterial infection. It's a nasty chain ofevents. Recently, I was treated for BV and I went through two separate means of treatmentand did not get better. For the past several months I have experienced burning and painafter intercourse. The past month and a half the sensation has been constant. Yet myOB/GYN can't find any abnormalities. I feel frustrated and desperate. I am so glad I foundthis web site. It helps to know I am not the only one who has this awful condition. I havestarted taking calcium citrate and I am watching my diet. I have tried vitamin E oil andhydrocortisone cream but neither have helped. I made an appt. today with a vulvodyniaspecialist in Hartford,Ct. My appt. is a month away. I would appreciate it if anyone couldtell me of a dermatologist that specializes in vulvodynia in the New England area. I feelI should cover all the bases if I can! I just long to be normal again. I feel like I'mless of a women. My fiancee is very supportive but I know he misses making love. I do too!Can someone please help me? I'm tired of this constant pain.
CommentI hope someone can lend some advice. I too have experienced the same symptoms asdescribed by the many women on this site. I am a 28 year old,full time working mother oftwo. I recently became engaged this past Christmas. My fiancee is a wonderful man and hasbeen very understanding through all of this nonsense. It seems I have always been plaguedwith recurrent yeast and bacterial infections. I also suffer from sinus problems. Sowhenever I'd treat a sinus infection,I'd get a yeast infection in return! Then,I'd treatthe yeast infection and sometimes end up with a bacterial infection. It's a nasty chain ofevents. Recently, I was treated for BV and I went through two separate means of treatmentand did not get better. For the past several months I have experienced burning and painafter intercourse. The past month and a half the sensation has been constant. Yet myOB/GYN can't find any abnormalities. I feel frustrated and desperate. I am so glad I foundthis web site. It helps to know I am not the only one who has this awful condition. I havestarted taking calcium citrate and I am watching my diet. I have tried vitamin E oil andhydrocortisone cream but neither have helped. I made an appt. today with a vulvodyniaspecialist in Hartford,Ct. My appt. is a month away. I would appreciate it if anyone couldtell me of a dermatologist that specializes in vulvodynia in the New England area. I feelI should cover all the bases if I can! I just long to be normal again. I feel like I'mless of a women. My fiancee is very supportive but I know he misses making love. I do too!Can someone please help me? I'm tired of this constant pain.
CommentThis is in response to Kelly who wrote on 6-9-99, asking about positive results of vssurgury. Mine is not positive, but I do feel you need to know everything before havingthis surgury. I was dx. with vs in 1991. I was given a 90% chance of success with thesurgury. I had to have a revision done in 1994, because the suture line didn't hold andthe vaginal tissue went back to it's original place. I have been in a chronic painhospital. I have had years of physical therapy, and I remain on medications and could notfunction at all without them, because of this horrible vulvar pain. Since having access tothe internet I have learned myself that yes I probably did have vs, but I also have vv.The vv is the nightmare. This nerve pain is chronic, and the only thing that keeps ittolerable is medication and a lot of prayer and support. From everything I have read fromother woman, surgury is not usually recommended when vulvodynia is involved with thevestibulitis. The chances of successful surgury seems to be when a woman only has the vs.I wish I had this information years ago, because the surgury was a waste of time, moneyand hope for me. My best advice is to do your homework, and get another opinion. GoodLuck. Judy
CommentI have had vulvodynia for three years. I finally got diagnosed after a year of beingtreated for recurrent yeast infections. When I got pregnant the symptoms disappeared andit has been 9 months since the vaginal delivery and still no pain, itching and burning! Iam breastfeeding, therefore I do not get my period and do not use sanitary napkins. I amwondering, could it be the chemicals in the sanitary napkins that is causing many of ussuch problems? I use cloth diapers on my son after reading about the terrible chemicals indisposible diapers. Dioxin is very harsh and harmful. Then I started wondering about theconnection between not having my period and not having any symptoms. I only hope it isthat simple! Has anyone found any information on this? I am ordering cloth menstrualproducts(for when my period does return) as an experiment. Please e-mail if you haveinformation on the irritants in disposible sanitary napkins and vulvodynia. If anyone isinterested, cloth diaper websites offer a lot of information on skin irritants, how tolaunder to reduce acid, bacteria etc.
CommentHello, I've had VV for such a long time. I was diagnosed with VV 10 years ago, but I think Ihad it even before that, as I remember going to the clinic in college for an"infection" and hearing the Dr. say, "it's not yeast," but treating mefor yeast anyway because the doctors didn't know what was wrong with me. It progressivelyworsened over time until I was sore and raw 100 percent of the time. The VV was the mostsevere when I was in an intimate relationship with my boyfriend. It became so bad, that Iwore longer dresses to work with high knee high stockings and no underwear. I sought out agood gyn who recommended the surgery. I didn't hesitate to say yes to the surgery becauseI was so miserable. The Dr. removed some of the tissue around the vaginal opening near thebottom. He told me prior to the surgery that it may or may not work. He said that therewas one other woman he knew who had success with it, so I opted for it. I had 5 years ofrelief completely symptom free. I thought I was cured, and then had a bout of the flue,and a Dr. prescribed antibiotics for the flue I had. Almost immediately, the VV symptomsreturned. I was again really miserable, and opted for a second surgery if anything to get5 more years of relief from VV. The second surgery did not work at all. The 2 surgerieswere performed by 2 different doctors so maybe the surgeries were different from oneanother in terms of what tissue was removed etc. I was really eager for a cure, not evenknowing at the time how difficult VV was to diagnose and treat. I've pretty much tried allthe topical steriod cremes with no luck whatsoever. Recently, I tried Premarin, and thatdidn't help. The Dr. put me on amitryptiline which I take about 100 mgs per day. At firstit did nothing, but after 3 weeks, I have felt some relief and feel grateful for that. I'malso trying accupuncture, and have had my first treatment, but need to go back for 2 moretreatments, once per week for 3 weeks. I've also received a referral from my Dr. to a Dr.in the Milwaukee area who I hear specializes in vulvar pain. I have not tried the lowoxylate diet or biofeedback. They are next on my list. I have not been in an intimaterelationship for awhile, and I'm not nearly as sore as I was when I was in a sexualrelationship. Stress seems to make this condition worse, and I've found that microwaving awet washcloth and using it as a compress gives me great soothing relief if onlytemporarily. I try not to sit for long periods at a time, as pressure makes the sorenessworse. I too, use no fragrance soaps or detergent, and wear cotton underwear which atleast keeps the VV from getting worse. I try to keep myself updated on the latest VVinformation and am very grateful to any doctors or people who work to help alleviate ourpain, or work to find a cure for this awful disease. Thanks so very much. Shelley
CommentHi this is kelly again I wanted to ask Nicole who responded to me is she had bothvestibulitis and vuvadonyia? I need to be optimistic and I am wondering if it flared upthe vv when the sugery took place? The last response made me nervouse but I know this issomething I must follow through. Say a prayer for me and thanks for your responses.
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CommentI haven't been diagnosed, although I have been to 2 doctors. I cannot even diagnosemyself, because I get so confused when comparing my ever changing symptoms to everyoneelses. My symptoms started 1 year ago. It started out as just a sensation. It was not a raw orburning sensation more of a tenderness. I can't explain it any better than that. Thissensation was infrequent, but became consistant within 4 months. The sensation turned intopain that I felt was inside around the area above the pubic bone, but mostly on one side.The height of the pain was getting the head of his penis in. The pain would continue for20 seconds and then it went away or I suppose it could have just been me becoming numb toit. Then it would hurt again when he became soft and his penis was just laying inside ofme. I guess it was just hitting the right spot. I went to my first doctor at this pointand she didn't know what it was, but suggested yeast infection treatment, although I feltno burning and have never had one before. I treated the supposed yeast infection andnothing happened as result of the treatment. Soon after I went 2 weeks without sex (due toa trip) and when I had sex again, I could only feel 1% of what I felt before. Perhaps thetime away was a time to heal. Within three more times the pain started becoming unbearableand I would have to stop sex. I went to another doctor and she suspected vaginal dryness.I took Replens suppositories for about 6 weeks. I don't know if that helped or hindered,because the pain changed. In fact, after my final suppository there was no pain, however,I had greatly reduced the frequency we were having sex. But afterwards, I felt incrediblerawness all over. This raw sensation lasted for a couple of days. My tenderness lowereditself from above the pubic bone to below it (still on just one side). This tenderness andsoreness could now be felt by hand alone. I went to the doctor and found that I had anabbrasion. The abbrasion has been treated with antibiotic cream, it isn't sore anymore butit still is tender. I feel a slight rawness around my lips throughout the day. Ultimately, the one doctor gave up on me and the other one wants to do tests forovarian cysts etc, which I think is ridiculous since that is not where the pain is. I have an appointment with a gynecologist in 2 weeks. I am hoping for better luck withhim, although he is a pelvic pain specialist (not a vulvar pain specialist). Do you knowof anyone who could help me in Calgary, Alberta? I also started taking calcium citrate. I would love to read any comments you may have on my situation.
CommentDear Dr. Glazer, What rate of success have you had with biofeedback? You seem to be thepioneer in this area. What is the cost, how much time is involved? What is your experiencewith medical insurance carriers in covering this expense? Are you taking on any new cases?You must be swamped! I'd appreciate any info you can give me. Thank you. AB
CommentI am a new visitor to the Vulvodynia websites as I am just beginning research on theinternet for my symptoms. It's been an increbible journey for me - including many doctorvisits, treatments and counseling. It also has taken a great toll on my 7 year marriage -which I am currently separated from my husband. I had almost given up hope - but it is sogood to find a forum where I can get get some good information and support. I am in searchof email friends for discussion on this topic. Does anyone know of any "chatrooms" or distribution lists also? I am in the Cleveland, Ohio area. Take careeveryone - email if you care to - please use the subject 'volvodynia' or something similarso I know to open the email. Thanks
CommentHi. It's me again! I just read the E-mail from above talking about sanitary productsand the possible link to vulvodynia. I too have noticed that I am worse around the time ofmy period. I also have been using pantyliners almost everyday because of the fact I alwaysneed to wear some sort of ointment for relief. I wonder if this is a contributing factor?I have looked for all cotton products in the store but I cannot find them. Would anyoneknow where I can find these products? If you do,could you please E-mail me. I would reallyappreciate it.
CommentI have suffered from vestibulitits for 3 years, and have been desparate to end thepain. I have been married for almost 3 years, and my husband and I are at our wit's end.After several failed attempts at treatment (anti-depressants, interferon injections,etc.), I finally decided to have the painful tissue surgically removed. The operation wastwo weeks ago, and I'm dying to know if it will be a success. I'd love to hear from anyonewho has had this procedure done, so I can find out what my odds are. Bless you all.
CommentI just read the message fron kelly. I am schedualed for surgery tomorrow and waswondering how painfl the recovery from the surgery is? The doctor told me I would be backto work in a week but it was 6-8 wks for full recovery. I don't have an e-mail adress sounfortunatly I need you to write back on this web site. Thanks for any information and Ihope all works out well for you.
CommentHi Kelly, Vestibulitis is vulvodynia, so yes I do have vulvodynia. I had extreme pain withintercourse and also the daily vulvar burning that did not stop. The pain with intercoursewas relieved for me by the vestibulectomy and biofeedback. I still continue to have flareups of the daily vulvar burning (2 in the last two years), but that is treatable withtopical steroids and estrogen cream. Because of my skin disorder I will always have flareups of the daily burning, but I can be treated and return to "NORMAL" again oncethe medication starts to work (about) three days. I hope your surgery went well. I was offof work for about 5 weeks. Since my surgery I have often wondered why sex is 100% better for me again and notothers who have said that they also had a vestibulectomy. I have read my vulvarspecialists handouts and think I may have some clue as to why. It says here that lasersurgery superficially to the gland openings does not work and often intensifies the pain.Could this be what some of the women out there had done to them? My specialist removed all11 of my glands to the root by laser. She had even said that if they weren't removedcompletely that they could come back. Maybe this is what happens with repeated use ofantibiotics if enough of the gland isn't removed. My ordeal like many of you also startedwith a course of antibiotics. I am angry with doctors for prescribing themun-neccessarily. They don't know why we get vestibulitis, but research shows that manywomen with VV have a history of taking many types of antibiotics both topically into thevagina, on the vulva, or by mouth. I know the next time I don't feel well and go to thedoctor I am going to demand a culture before given antibiotics again! Some people have had questions about pregnancy and the symptoms going away. I was toldby my doctor that this disease also has to do with estrogen levels. She said that I didn'thave to worry about burning during pregnancy because our bodies produce enough estrogen tokeep it off. I think that is why a lot of us find that the Estrace cream works atrelieving some of the symptoms. She also said that this condition seems to worsen duringmenopause because of the decreased levels of estrogen. To those women who are pregnant nowand suffering that posted on this site, I wonder if your symptoms will get better afterthe 1st trimester? If not, it isn't o.k to use the estrace after 1 month, but I have beentold that it is o.k. to use the topical steroids indefinitely throughout the pregnancy. Ilucked out in finding an OB who's wife also has lichen schlerosis and suffers at timeslike the rest of us. I am glad that when I do conceive, I will have someone who will treatme that understands. I also have answers to some of your questions about the use of pads. My specialist saysthat they worsen the vulvodynia because your irritated skin and vestibular glands rub onthem and cause worse pain. Even though it may hurt to insert the tampon, I think you willbe better off in the long run. When my ordeal started she gave me some info on somethingcalled "glad rags". They are cloth pads that you can use as opposed to theregular ones we're all familiar with. I don't know what company makes them though, becausethat was one of the only pamphlets of hers that I threw out because I didn't want to usethem. I hope I have helped a little. I also hope that I don't make anyone angry who is worseoff because of the surgery. Like all of you, I spend every day just trying to figure thiswhole thing out. It has definitely left it's emotional tole on me as well. I really didhave a knowledgeable doctor and that is the only reason that I am able to relay all thesethings to the rest of you. I thank god every day for finding her. For anyone whosesurgeries did not work, I would really recommend going to see her. It breaks my heart thata lot of you think your going to have to live like this forever, because it's not true. Ifonly we could get enough knowledgeable doctors out there who also knew how to treat this.I know others are sceptical because you have seen so many other doctors, but she reallydoes know how to help women with this and could get you back to normal too. If you canafford the trip to Wisconsin, it would be worth it!
CommentI'm responding to Kelly who wrote on 6/17 that she was having surgery today. Sorry Ididn't get to you before you went in, but my doctor told me the same things yours did. Ihad the surgery 6/3, and went back to work on 6/14. (I missed 7 work days). The pain waspretty severe for the first 3 or 4 days (sitting down was bad), but I found that lyingdown with an ice pack on the area really helped. It has been two weeks, and I feel muchbetter (though I won't be riding any bicycles or horses anytime soon!) I go back for myfollow up appointment next Wednesday, so I'll let you know how that goes. We just have tostay positive, because it sounds like there are a number of women who have beat thisthing. Let me know how you're doing, my thoughts are with you. (To avoid confusion betweenus, I'll continue to use my last initial after my name.) Take care.
CommentI have had what I believe to be Vulvodynia for the past 12 or so years. Intercourse isvery painful, raw, burning feeling, every time. I too have been to quite a few doctors,almost all have talked down to me, telling me to relax, blah, blah, blah. One even told meto get counseling!!!!!!!!! When they examine me they say everything looks fine. Anyway!I'm wondering, has ANYONE found relief trying the low oxylate diet and the calcium citrateand perhaps the Ox Absorb. We can't seem to find Ox Absorb anywhere. The thought ofsurgery scares me and I want to give the diet a good try. I'd realize appreciate any helpANYONE can give me. My current doctor is real good, she just doesn't seem to know muchabout this. Thank so much, Cathy andzuli@ibm.net
CommentI would like to follow-up with info regarding my January 13 surgery. The surgery iscalled "total vestibulectomy with vaginal flap advancement and reconstructivesurgery". I must say, I am thrilled with the results! It is a long healing/recoveryprocess but as of today I feel that the surgery is a success! I know this may not be foreveryone, but after 6 1/2 years of trying every treatment known, many different doctors,and lots of meds, I felt that I had to try the surgery and it worked! I know that I musttake this one day at a time, but I am confident this is it for me. Ladies, I would be happy to answer any questions you may have. I am eager to share myexperience in hopes that it may someone. My e-mail is click64@hotmail.com My prayers are for each and everyone of you suffering from this horrible condition. Sherry
CommentHello all, I am a 22 year old recent college grad. I've had had severe vulvodynia (VD)for the past 5 months though I've been plagued by mild symptoms and irritation for thepast two years. I have know about Dr. Glazer's site now for a couple of months but I havenot yet posted a comment of my own. I wanted to be sure that when I made an entry in thisbook that I would have something positive to say. I have thought a lot about why this hashappened to me, and exactly what might have occurred in my life to bring this diseaseabout. Pamela (entry above) said, "this disease is a call for us to look deeper intoour lives. Our bodies are sounding of an alarm that things are not quite right in ourlives and that we need to take better care of ourselves." This is something that Itruly believe, especially for myself. I know that my case was, if not started by stress,at least intensified by it, as I am a person who has dealt poorly with stress since ayoung age. I never learned how to keep my worrying and stressing in check. Rather thandealing with my stress and trying to eliminate it, I indulged in stress allowing it toconsume me as my body suffered from repeated opportunistic infections and side effects ofceaseless anxiety. The result? A chronic disorder whose cure is unknown, and treatment anongoing challenge. Though I am saddened to be afflicted with such a punishing disorder itis my goal to remain confident that I will find a treatment plan that will work for me.Just think, if you were alone with this problem, solving it would depend on your effortsalone. Even If you and I were the only ones with VD then at least we would be twice aslikely to find a solution. In reality thousands of women suffer from this condition,therefore we can all help each other and the likely hood of overcoming the problem hasbeen greatly increased! Just the other day I was walking home when I saw a young man in awheel chair struggling to wheel himself across the uphill busy intersection near my house.I never considered my self lucky to have VD before that moment. But my disability is notoutwardly manifested, displayed openly on my body for everyone to look at, always. Asidefrom a few loved ones it is my secret to share with whom I must. For the most part we canprotect ourselves from the humiliation, discrimination, and abuse that many disabledpeople likely face everyday as they go about their public lives. Yes VD is painful, it isdisabling, it is life changing. But I am reminded to be thankful for what it is not: It isnot fatal, it is not communicable to our loved ones, it is not a punishment , it is not avisible physical defect unable to be hidden from a cruelly judgmental world. It is notincurable. I have found that the happier I am day to day, the better I feel… It is afavorite practice of mine to copy and paste positive stories and entries from the guestbook into a word document to be printed out. Reading other women's hopes and successstories reminds me that others have gotten better and that this is a TEMPORARY setback onthe road of life that I can overcome, and that serves to remind me right now not to takeanything for granted not my, life, my health, or my disease. I will find my cure for this,I will conquer it, I will beat it. The first step is knowing what it is! I will change mylifestyle! I will not become discouraged, I will not blame myself or anyone else, I willNEVER take my health (or my sex life!!!) for granted ever again. I will continue to learnabout vulvodynia, I will get better, and when I do I will write my success story tocontribute to that growing likely hood that each of us WILL recover from his terrible butby no means conquerable disease. NEVER GIVE UP!!!
CommentI had avery bad experience with the professional diagosis of this condition. When Ifinally took the initiative to discuss this with a mid wife, she tested me for herpes, andthen had no explanation for my problems when the STD test came back negative. I thought iwas just too small for my husband and that sex would always be painful until I hadchildren
CommentUntil today, I had no idea what might be wrong with me. My boyfriend and I werebecoming very worried about the pain I experienced during and after intercourse -- theburning, "razor-cut" feeling like many of you had described. I am calling mydoctor tomorrow to try to get this all sorted out. Thank you for sharing your stories andbless you all.
Commentafter being diagnosed with vulvodynia i have been through all of the treatment evensurgery!!!!!! now a year later i am back wher i started 10 years ago. help!!!!!!! i can'tsay how nice it is to know i'm not the only one with vulvodynia. your sight has givin mesome hope.
CommentI have to respond to Dawn's message from 4/9. I think that getting the medicalcommunity informed about what VD is and how it can be sucessfully treated is only the tipof the iceberg. Once we get everybody "fixed, healthy and pain-free" then whatwill remain? Women all across the nation who for years have not had sex because of thepain that's involved. Even if the medical community learns how to fix our physcial pain,the psychological trauma will remain for many of us. Sex = pain....so after a while youlearn not to need it, and even not to want it. There's evidently a great sex therapy program at Loyola University in Chicago that myhusband and I will be looking into ASAP. My vulvadynia was cured once last year by anexcellent PT in Philly, Erica Fletcher. But like an idiot, I didn't follow the exerciseroutine she gave me to maintain my healthy body and of course the pain came back. So now I'm getting back in therapy in Chicago with Elizabeth (Dee) Hartman, anotherexcellent PT who also treats vulvadynia. Best wishes to all of your for finding a cure for the cause of your pain. If you've hadthis pain for years like I have, unfortunatley, it seems like the real battle comes whenyou're cured and expected to start having/wanting sex again. But it's worth the fight! : )
CommentCan anyone tell me how physical therapy is used to treat VD and why? I've assumed thatVD is skin disorder caused by environmental illness or a stress disorder. It isinteresting to me that most everyone contributing to this page have symptoms that are moreor less uniform. this is simultaneously relieving and distressing; the former because itmakes one feel like their not alone in their suffering and that they're not ahypochondriac, the latter because it is scary because this is still a mystery disease. Does anyone else think that this is a symptom of environmental illness?
CommentPamela, it also struck me as interesting that as I read these 8 (!) guestbooks full ofwomen's stories, the symptoms are ALL similar. On the other hand, here I also read aboutseveral DIFFERENT successful treatments: anti-depressants, electrical stimulation,surgery, lowering stress, drinking lots of water and avoiding certain clothes/foods, etc. However, I haven't heard many health care providers talk about the CAUSE of vulvadynia. Erica Fletcher is a PT in Philadelphia who is regarded by many to be the best in thefield of "manual" physical therapy. Erica determined the cause of MY vulvadyniato be instable feet, which cause my hips to be uneven, which cause lower back pain andalso SPECIFICALLY cause the muscles on my PELVIC FLOOR to be slightly wrenched (as Iwalk). Imagine, Erica told me, clenching your bicept muscle for 7 years, then poking thatbicept with your finger. How much would that hurt? About as much as trying to have sexwhen you've been walking around clenching your pelvic floor muscles for several years! Additionally, due to the poor stability of my feet and the resulting foot pain, I haveled a relatively exercise-free life...and consequently, all the muscles around my pelvicarea and upper leg are also incredibly weak, which feed the entire problem even more. Allthese reasons, Pamela, (to answer your question from 6/26) is why PT was used in myparticular case and in the case of most of Erica's patients. After Erica cured my vulvadynia with her PT program, I began to hear of more women withVD--mostly via this website. When I heard on the CBS show "Life, Sex and the Miracleof Birth" that some were trying to end their pain using surgery...well, to be honest,I was horrified. And when I read on this website that some women seemed to be ONLYtreating the SYMPTOMS of VD(the pain) but not treating the CAUSE, I was confused. If yourvulvadynia was cured without the cause ever being determined, then what's to say it won'tcome back? There really needs to be more communication among health care providers about the CAUSEof vulvadynia. I'm convinced Erica Fletcher has found at least one major cause--if not THEcause. Either way, again, if the cause of your vulvadynia was never identified, how canyou be sure it won't come back? Finally, as one of you suggested (I believe somewhere in Guestbook #8) I am composing aletter to DATELINE NBC's Story Suggestions requesting they report on VD. If this isn't a national health crisis, what is? Hang in there, everybody.
CommentI was glad to find your web site. Having vulvar vestibulitis is hard for other peopleto relate to. At support group meetings people aren't as open because of embarrassment.Vulvodynia and vulvar vestibulitis are very painful and disruptive conditions. It is greatto "talk or listen" to others.Thanks
CommentHi, does anyone know of a doctor here in Sydney, Australia who treats Vulvodynia.Perhaps there is someone out there who can help me. I have limited scleroderma (a verynasty painful type of rheumatoid arthritis) and I went into early menopause at age 35. Iam now 43. I think my problem is due to these two. My pain is not external but internalduring sex. I am now on natural hormone replacement, take glucosomine and chondroitins,grape seed, plus many other herbs, vitamins and minerals. I would really like to start aprogram of pelvic muscle exercises with biofeedback, Can anyone help me. I live in NorthRyde, in Sydney, Australia. Many thanks for taking the time to read my comments. Cheers Myra
CommentHello to all, I need to some advise from Dr. Glazer. I have been dealing with this problem for over ayear & my doctor is now ready to call it Vulvodynia. Have you ever heard of anyonehaving rectal irritation as well as vaginal? My symptoms seem to flucuate between the twoareas. Please advise.
CommentI think I finally realized what is wrong with me! I have been having problems thatmatch vulvodynia symptoms for months, I have been to my Gyn. four times, and have had manytests done...they all came out with nothing! I have strong reasons to believe this is whatI am suffering from. I am going to have a discussion about all of my web findings with mydoctor, and hopefully I will be referred to someone who is an expert in the field. It is acomfort to know that so many women are going through this as well.
CommentMy question goes to Dr Glazer---My vulvadynia came on from over-use of anti-fungalcream prescribed by my OBGYN. After testing-- when symptoms were getting worse I wasdiagnosed of not having yeast. To bad I wasn't tested before my doctor so easilyprescribed me anti-fungal. How can pelvic floor exercises be helpful to me if myvulvadynia was caused by contact dermatitis?? Sincerely, Lois C
CommentAfter reading all of your letters I could cry. I have suffered for 10 years with thisand I'm only 24! I have learned a few things that none of you have mentioned. So heregoes. For severe burning pain try over the counter Uristat or Azo Standerd (medicine forurinary pain relief) it is the only thing that provideds 100% pain relief. Also I stoppedwearing underwear at all and I have alot less flairups! Also when you are sure you have aninfection (bacteria/yeast whatever) try this:Buy vinegar and water douche and add 2 dropspure tea tree oil warm up and use. It leaves a cool soothing feeling and kills bacteria,yeast and others. Do this for five days.
Commentcontinuing from last entry... Do not put anything on your vagina! Just Water. No soap,nothing. Do not take any antibiotics unless you will really die without them. Even if yourdoc. tells you to. Do not use any anti- yeast meds. This all disrupt your system and makeyou worse. Use natural lubricants for sex( olive oil, saliva, ). Above all get checked fordiabetes, thyroid disorders, and any other autoimmune disorders. If you have one and itgoes untreated it can cause your problems.
CommentI didn't konw there was another Beth so I'm the 24 yr. old. HOW MANY OF YOU HAVE EVERUSED NORPLANT OR DEPRO/ PROVERA? There is a connection and I'm trying to prove it. Pleasetell me.
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CommentI have not been diagnosed with Vulvodynia. I have been told by my gyno, who is supposedto be one of the best in my area, that my skin in vulva has been too traumatised and thereis nothing that can be done for me.It is eighteen months since my husband and I have hadintercourse as the pain is too unbearable. My story is too long to relate in one evening,but I have had a history of urine infections, candida, migraine headaches over the lastten years.I am 49yrs. old, have had four children,all caesarean delivery. As much as Ihate to admit this I never had any of these problems until I met my second husband 10yrs,ago. As you can imagine we are both very concerned about this and just wish we knew whatto do . We would appreciate any advice,or if anyone would like to chat to me about this,Iwould be only too pleased to do so. My thanks to anyone reading my problem. Helen
CommentHello, I am currently living in Sydney but have plan to move to the US. Do you know of anyDoctors in Sydney who are able to treat Vulvodynia successfully or is it necessary to cometo the US? I also suffer from T4 Syndrome. I am very interested to read about theconnection with the pelvic floor muscles and wonder whether has something to do with myback problem. I would appreciate it if you could contact me and give opinion on the best course ofaction. Regards Jane Howarth
CommentI have seen two gynecologists for this problem. My first one had no idea what he wasdoing. It appeared that I kept getting yeast and bacterial infections. However, histreatments were not helping. I eventually went to another gynecologist. She performed aculposcopy and found nothing- just chronic irritation. She suggested biofeedback therapy.That did not help me either. My second doctor keeps pushing surgery. I am definitely notgoing back!! I also have seen two different doctors for possibly having fibromyalgia. Mysecond doctor is very proactive-said I do have it. He prescribed nystatin-8 tablets a day.He said vulvodynia is caused by a low grade yeast infection and most gynos don't agreewith this. I have notice a definite decrease in discharge but was still having pain in thevulva area. My doctor tried trigger point injections but they did not work. He referred meto another doctor in his practice. He did a rectal exam and found I have a very loosecoccyx (tailbone). There is nothing to provide stability-my pelvic floor is not stablethen (I think that is the explanation) He has done a rectal adjustment of my tailbone andalso a technique called prolotherapy which will help rebuild the tissue for stabity. Sofar, after the first rectal adjustment, I did not experience burning when going to thebathroom. I will see what happens- I am very hopefull as all of these problems startedafter I fell on my tailbone( each doctor that I saw for this problem was told of this.) Ibelieve this doctor is on the right track. I also saw a chiropractor for this conditionand I believed that also helped alleviate some of the pain. Please seek alternativesbefore considering surgery. There may be an underlying cause to your pain.  |
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