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CommentHappy and healthy new year to all of you and continued thanks for sharing yourexperiences on the vulvodynia guestbook.
CommentI have been suffering for over 10 years. Am at a point where I am considering surgery.At first I had days where I was normal and just had nsome days that were problematic. NowI suffer all the time. Took elavil and hydroxyzine all these years with only occasionalreleif. Now trying zoloft
CommentI was so excited to see all the entries in the guestbooks. I am shocked to see how manypeople have had all the same things I've had. I'm 31 and have been having the burningsensation for atleast 10 years that I can remember. Off and on, I'm lucky to say that Idon't have it ALL the time, just close to my period, before and after and mostly in themornings after I go pee. I don't know if I have the same thing or not, I don't have theexterior burning, only inside, like up to the second knuckle of the forefinger. This timeit is very bad, I'm wondering if it is seasonal, I've burned nonstop since 4 days ago. Theonly relief has been mega dosing on Advil and also Uristat. It doesn't eliminate itcompletely, but it definitly relieves it a great deal. But boy, when that advil wears off,the burning sets right back in full throttle. It is absolutley one of the mostdebilitating things to have. I'm feeling relieved just to know that others have to go thruthe same thing. I just saw my Dr. yesterday and they found white blood cells in my urine,we're still waiting for the results to the test, whether it is a UTI or not. Meanwhilethey have diagnosed me with BV (bacterial vaginosis)I've looked this up on the internetand have found that I have zero of the symptoms involved w/BV, so here we go again withthe wrong diagnosis. They have me on FLAGYL, which I am worried about, but I guess I'lltake it and see what happens. If anyone knows anything that you think might be relevent toFlagyl and this disorder please let me know. I too have been through lots of Drs. lookingfor the answer. I've talked to others and friends and family and nobody I know hasexperienced this burning thing, itching yes, like w/ a yeast infection, but not thecontinuous burning. I hope and pray for all our sakes that they come up with something torelieve our pain. There has got to be some thing out there that would be a simple commonsense pain reducer, some ph neutralizer or something, If they would devote more time andenergy to this I'm sure they would find a cure. I'm sending some of these guestbookentries to my Dr first thing tomorrow. I wish I could come up with something to solve theproblem, any ideas, feel free to e-mail me.
CommentI have been suffering from vestibulitis on and off forthe past 5 years. I have triedusing allergy-free toilet paper, washing undergarments separately, etc., and still nochange. Most recently, I am using Premarin, a topical cream, but results are minimal. Iwish I knew what was causing this so I could change the behavior. If anyone has anysuggestions, please help! My OBGYN suggested seeing a specialist if things don't changesoon.
CommentMy name is Tracy, and I have been suffering from vulvar vestibulitis 4.5 years. It allstarted w/alternating yeast and bladder infections, then to various bacterial infections.I was treated w/various creams and antiobiotics. Then after about 2 years of variousinfections, I still had redness and burning. I was given various creams for the rednessand pain w/ no success. I ended up having my 1st perineoplasty surgery in Aug. 97. It didnot do a lot of good. I got married in Oct. 97 and got pregnant immediately. Thevestibulitis stayed with me my entire pregnancy, and after I delivered in June 98, Iexperienced some relief from the pain especially during intercourse. I attributed this tomy vaginal area being stretched from the delivery. I ended up having my secondperineoplasty surgery in Feb. 99 at the U of W in Seattle by Dr. David Eschenbach (veryexcellent dr. in this area). This surgery proved to be more successful; however, I stillhave redness and irritation of the vulva. Does anyone have this same symptom? I have beengiven different creams to try along with anti-depressant medication, with no success. Idon't understand why I still have the pain. I seem about 80-90% better where the surgerywas, but I still have discomfort. Now after almost 3 years infection free, I have nowdeveloped another bacterial infection. I have tried 2 rounds of antibiotics with nosuccess. I do not want to start the cycle over again. I need some suggestions on how toget balance in my vaginal area again? I have been eating yogurt, taking acidoliphis pills,etc. I would also love any feedback on what to do for my irritation and vestibulitissymptons. I am very grateful to have found others that understand what I am going through.I live in the Seattle area if anyone else knows of a local support group.
CommentI have sufferred from this very debilitating condition for over seven years. I burnright from my anus to my urethra. It has affected me emotionally as well as physically. Iam currently on the low oxalate diet as well as taking calcium citrate; however, have notexperienced as much relieft as I would like. I am finding my anal pain more debilitatingthan my vulvar pain, and I was wondering if anyone was experiencing the same pain, and ifthey found something that helped with the pain. My thoughts and prayers are with everyonewho suffers from this horrible affliction
CommentLaurie, I have the same problem with anal irritation and pain. It feels very dry also.Unfortunately, I haven't found a solution yet. I've been putting vitamin e oil on thereinbetween the 2 times a day that I put on the Estrace cream. I could use some suggestionsmyself. Sue
CommentLaurie, I too have vulvodynia. I had some anal burning and my gyno thought it might befrom some hemorroids I didn't know I had. I used suppositories for the hemorroids and wascareful not to put too much pressure there when sitting and it went away. This is just athought for you to check out. Hope you feel better soon!
CommentDr. Glazer, What happened to the 10th guestbook? Ever since the new one has beenstarted, the last one has disappeared. Anyone else w/this problem? Thanks
CommentI just want to say thank you for providing such wonderful information about vulvodynia.One of my biggest concerns with having it is that b/c of the infections that I keepgetting I get pain in my groin area on the left side, and end up having to go to the drevery month to get treated for yet another infection. I wish that I would have had theknowledge about vulvodynia that I have now back in Sept of 1999 when I was finallydiagnosed. I just wish that it wouldn't have taken 2 years to get an answer, but I'm happythat at least I have an answer now. I will just be so glad when the day comes that we get word of a cure for it. Please keep up the good work in getting the word out about vulvodynia to everyonearound the world.
CommentI have been prescribed TRIMOVATE CREAM for vulvodynia. Have any of you heard of thisand if so did it help or worsen the problem? I would be grateful for any comments.
CommentPam, are you talking about Temovate cream? I tried it at one point. It helped at first,but then caused more burning. I was later told by a different Dr. that it can THIN theskin rather than thicken it like estrogen cream. But some women find relief from it, soyou may as well try it and see. Everybody responds to meds. differently. Good luck. Sue
CommentFor anyone trying to research this condition on you own, here are some Web resourcesI've found to be useful: National Vulvodynia Association: www.nva.org Vulvar Pain Foundation: www.vulvarpainfoundation.org Center for Vulvar Diseases, U of Michigan: www.med.umich.edu/obgyn/vulva/vulvedu.html Rowan's Resources: (list of oxalate content of foods, general useful info. and links):www.branwen.com/rowan Info. on Dr. St. Amand's guaifenesin treatment: www.guaidoc.com Julie's page (general info., links, medical articles and bibliography):www.vulvarpain.icomm.ca If you're in the United Kingdom: www.vul-pain.dircon.co.uk These are the best that I've found--I urge anyone looking for information to try themall! The amount of information (especially possible causes and reccomended treatments) canseem overwhelming at first, but don't believe the doctors who tell you that it's all inyour head or that there is no cure. People ARE cured--it's just a matter of finding theright treatmetn FOR YOU. Because there seem to be numerous causes of vulvar pain, the sametreatment doesn't work for everyone. Here are some of the major ones: 1) low oxalate diet2) anti-depressants 3) topical estrogen 4) guaifenesin 5) physical therapy 6)diflucan/other chronic yeast treatments I hope this is useful to some people! --Katherine
CommentSUE, Many thanks for your reply. I live in England and I am assuming you live inAmerica. I thought I would let you know that I contacted a Pharmacist today and sheconfirmed that TRIMOVATE and TEMOVATE cream are the SAME thing. Thanks again for yourcomments they were much appreciated. Best wishes to you Sue - perhaps we will speak again.
CommentPam, you're very welcome. Let me know if the Temovate works for you. Estrogen creamusually works well for me. I live in California. Sue
CommentThis message is for Lara. I was misdiagnosed with bacterial vaginosis and prescribedmany types of treatment such as Flagyl. It was later determined by a different physicianthat I did have vulvodynia. I think you have done the right thing by looking into thisdiagnosis. I would express your concerns to your doctor since you feel that the symptomsdo not match. I wish I would have not accepted that diagnosis as the answer. Some of thetreatments can make things worse. Not to discredit your current physician but I think youshould follow your gut reaction about the diagnosis. Good Luck!
CommentThis is for Pam....I was prescribed Tenovate cream by my gyn. doctor about a year and ahalf ago. It was absolutely horrible. It made the burning much, much worse. I had to putcold compresses on the area just to get rid of the effects of the Tenovate. I told the gynabout this, and she said it was probably too strong...but did not recommend anything inits place. She had also suggested Benadryl cream (I don't know what the English equivalentof this would be). It's basically an anti-allergy symptom cream. So, I tried it...sameproblem. It made the burning much, much worse. At the moment I am experiencing asymptom-free period, for reasons which elude me (but I will enjoy it just the same). Iknow that before too long, the burning and redness will return, and life will be hell onceagain. Also, I have noted in many entries that some women get frequent urination andterrible burning with urination. I get these symptoms as well. The other relevant thingwould be that as a child (age 10 thru 12) I had problems with frequent urination andcrystals in the urine...but no actual bladder or kidney infections. Hope this is of somehelp to someone out there. Pam, let me know how you make out, and best wishes to you.
CommentI just got back from another OB/GYN and he said that I have small tears on the vulvulararea along with the hood of my clitoris. I keep getting them in the same area--has anyoneelse had this? I'm afraid that they are being caused by a STD but he says that he seesthem all the time and I have nothing to worry about, but it is very sore. I read somethingabout estrogen cream working to strengthen the skin, but my doctor refuses to prescribe itfor me. Has anyone tried a homeopathic remedy similar to estrogen cream? Please answerhere or e-mail me at yssit@ivillage.com
CommentThis is for Christie...I just read your entry, and I have had very small tears on thevulva and also around the clitoris. It only happened once or twice, and that was over ayear and a half ago. My gyn thought it was being caused by herpes! She tested me for this,along with chlamydia, gonorrhea, AIDS and trichomoniasis, and all tests came backnegative. I haven't had the tears since then, but I figured they were due to all of theirritation and intense burning, along with scratching so much because the itching was sobad. Another time, when I was diagnosed with a nonspecific bacterial infection, I actuallyhad peeling in the entire vulvar area. This looked exactly like when you peel after a badsunburn. It didn't hurt at all, but it was very bizarre. I hope this is of some help toyou! Good luck.
CommentChristie (I think I e-mailed you before) and Regina - I too get those little cuts - butvery sporadically and all my tests came back negative too. I have not been able topinpoint what exactly causes them. my doctor has recommended estrogen cream and as soon asi finish treatment for the yeast infection i have now i am going to start using the cream.it is supposed to strengthen the skin but i think you have to use it consistently for along time. Everyone - does anyone else ever get sporadically really itchy and irritated under thepubic hair area? any solutions? i hope we all find relief soon!
CommentI just wonder is there anything we can do to get research regarding what we have in thefore front? We have helped men with ED, which is what it is called now. They evenadvertise the help on T.V. There are so many of us out here what can we do to have ourproblem looked at seriously. I think about that all the time. Can we go to congress, isn'tthere anyone that studies this everyday. We as women are suffering from something thatseems so unreal. How can we have something that has no cause, and no cure. I think thatthe doctors still think it is all in our heads. We take antidepressants they don't help.We have surgery that is not the answer, how barbaric to cut our vagainas apart. There hasto be a cure. I read this site everyday. I have read all I can read, everything is thesame nothing has evolved to any place that is helpful. We sit in this dark hole and get nowhere. Why? I get so angry sometimes but I just can't think of anything that I can do.Should we write to the big hospitals, to the drug companies? I don't have the medicalexpertise to do that. What would I say, we need someone that has a lot of medical pull inthis country to stand up for us. We need a woman doctor to experience this (god forbidthat this would come to anyone)so she can stand up and scream for research. Well I havevented, enough. All I have left to say, is thank god for my understanding husband. Pleaselet someone come up with a cure, I cant' stand to see all of us trying the same stuff andnothing works. No meds no creams, and steroids should be banned from use on women with VV.It only makes it worse and we sure don't need to have that. I have just spent the lastweek suffering from what seems like a bladder infection and it isn't. If it was then thebactrim would help, but it doesn't. The only thing that helps is pyriduim. Thank god forthat, at least it stops the burning and spasms. We didn't even use to have that. Well ifanyone comes up with an idea on how to push the medical field to see us let me know I willbe the first in line to help. If I think of something I will be right on it. Pray for a cure or even just some meds that really work. Lj
CommentLyn J: I agree with you that more research needs to be done to find a cure. Also, Ihope that all the wives of Drs. who tell us this disease is in our heads end up withVulvodynia and then we'll see what these Drs. have to say!!!!!!!!! I know that soundsmean, but I'm tired of suffering and not being taken seriously. Sue
CommentI forgot to mention in my previous post that I've written to other medical websites,newspapers, magazines, TV shows, etc about Vulvodynia and none of them have bothered torespond. It's VERY frustrating. A friend of mine suggested that I write a book about it,but I wouldn't know where to begin. Sue
CommentThis is the first time that I have visited this site. I have had vulvar vestibulitissince I was 14 or 15. Right now I'm 20 years old. As if college wasn't a big enoughstress! Pam - I too am on Temovate cream. I use about a half inch of it and estrace creamat night. My Dr. recommends mixing them to prevent thinning of the skin. I am also onCortifoam and 2 anti-depressants. The anti-depressants have helped to ease the discomfort,but nothing has helped much. I had a biopsy done, and it turns out that I have a rare skindisease called lichen planus. I have to get a vulvar vestibulectomy in March. I have heardmany mixed things about this surgery and would like to know some thoughts on it. For thoseof who who don't have a skin disorder, another option to look at is the nerves that leadto your reproductive organs. A chiropractor would be a good start for that. You should beable to find some relief. For anyone who has had the vestibulectomy - is it too much totake 12 credits at the same time? Keep up faith!
CommentThank God! I think I finally know what is wrong with me. I have been going to thedoctor for over a year with the burning and itching, pelvic pain, etc. I was treated withFlagyl which did nothing for me but make me sick. I plan to take this info straight to mynext doctor's appt.!! I thought I was going crazy or maybe it was all in my head... Thankyou for all the helpful information and I too will pray for a CURE very soon!!
CommentI was diagnosed with vulvodynia about a year ago - have tried antidepressants, Estrace,lidocaine, yeast drugs... NOTHING works! But my pain is only during intercourse - doesanyone else have it limited to this as well? And if so, what do you do? I'm about to breakup with my fiance because I don't see the point in getting married if the sexualrelationship is nonexistent.
CommentI'm looking for a vulvodynia/VVS support group in SE Pa. Please e-mail me if oneexists. Am astonished to find website and realize prevalence of vulvar disorders...and sofew gyns knowledgeable! The hit-or-miss approach to treatment is expensive and discouragesfollow-through.
CommentHi, this is for Pam in England, where I am too. I'd be interested to hear who you wentot for help as the GYN I am seeing (referred by my GP) doesn't seem to know a great dealabout VDynia. Also one word of caution. I went to the VPS website (based in the UK)hopingfor some help and direction in November sending in a subscription to receive thenewsletter etc. In spite of a follow up letter I have heard nothing, (though my chequehasn't been cashed). There's no e-mail contact or phone number on the site and they're notresponding to letters. The site itself is good though.
CommentDr. Glazer, I'm 22 years old, and I have Vestibulitis for about a year, but it wasdiagnosed 3 months ago. I'm trying a new low Oxalat diet, and it seems to be helpfil. Yourweb site is a greate help to women in my condition, since in Isreal there is not enoughinformation, and even doctors cannot answer all my quastions. Thank you, Maayan.
CommentWhat is a low oxalate diet? I am ready to try just about anything!!! Have tried Ogencream, estriol cream and now just relying on vaseline after each trip to the bathroom.. Itworks just as well as anything else I've tried and is a lot less expensive. Trips to thedoctor are expensive and no solutions... SOMEONE TAKE THIS SERIOUSLY, PLEASE!!
CommentGood to have company, but I am sad to find so many women suffering without a"cure." In June, I developed a small bump beside my vagina; it, and the areaaround it are sore and burn almost all the time. it has been tested and scrutinized,everything negative. My latest specialist has diagnosed vulvodynia. I also experience utisymptoms, but my tests are negative. I also have genital herpes (have had for 19 years)and it has flared for the past 6 months too, but in an odd way. I am now wondering if itis not the herpes, but the vulvodynia. This is the weird symptom, and I would be so very grateful to know if anyone else hasthis condition: I have pain, burning and soreness in the pubic hair area. First one sideof my pubic area will feel prickly and painful, it lasts 2-3 days and then the other sidewill start up. Nothing, except warm baths, seems to help. Since the herpes also uses nervepathways, and there is PHN to consider (post herpetic neuralgia), I just cannot determinewhich it is. Sadly, neither has a cure. I have tried all the anti-virals, and they havenot helped, which makes me suspect it is not the herpes (although in the past anti-viralshave not helped much either). My usual outbreaks are sometimes in the pubic hair area, andfeel the same, and I rarely get an actual lesion. I just don't know which it is, so Iwould really like to know if anyone else has experienced pubic hair pain. I am taking elavil and using Estrace and hoping for improvement. I am also going to seea homeopath next week, has anyone been helped by this?
CommentHelen, I get the burning in the pubic area also and don't know what it's from. I don'thave herpes, just Vulvodynia. It's usually on the left side and I feel swollen at the sametime. I haven't had it now for a couple of weeks. Anyway, you're not alone there. Hope youfeel better soon. Sue
CommentFirst, Sue, thank you for responding. Does your pain in this area seem to come for acouple of days then go for a day then come back again?? I wonder how I am going to get tothe bottom of the "pubic hair area pain." I just can't tell if it's the herpesor the other. Since neither has a cure, i am not so sure it matters! Secondly, has anyone out there had thesymptom that is causing my doc. to diagnosevulvodynia: I have a small bump with a few tiny tracking bumps near the entrance to myvagina. This is the area that causes continuous pain and burning. My gut tells me that ifthey just removed this bump (about 1/4" around) I would feel better (my doc sayssurgery is the very last option, which I understand, but we are talking about a very smallarea). No other areas of my vulva are in pain. My symptoms are the "bump" andthe "pubic hair pain". Can anyone shed any light on all of this, please?? Lookforward to any similar stories.
CommentSue, I read your post from 1/20/00 about writing a book. I do know of two wonderful doctorswho ARE writing a book in which I will be used as a 'case study' in. I have been promotingthem since the day I sat in their clinic in Boston, MA last October. Dr.'s Jennifer andLaura Berman of the Women's Sexual Health Clinic in Boston, MA are the two women that I amraving about. These ladies are making progress in the world of women's sexual health. Ifanyone would like any information on them, please feel free to contact me. After seeingnumerous doctors and therapists and being diagnosed and treated with the wrong medicationsfor 2 years, my husband and I finally were fed up with the bull. We drove 13 hours (fromOhio to Massachusetts) to see these two doctors. Since seeing them in October, my husbandand I were treated with a yeast medication, I alone have taken Diflucan, and am currentlyusing a Testosterone cream along with Premarin cream alternating them every night atbedtime. After seeing so many doctors for 2 years and being wrongly diagnosed, in 5 months(after going to Boston) I am overjoyed to say that I am now pain free!!! I haven't yetjumped the gun to say that I will be pain free forever (I am very much a pessimist) but Iam hoping that under the care of these two women along with the creams, I will hopefullybe able to live a 'normal' life again. It makes me angry to think that I will, mostlikely, have to use these creams for the rest of my life (I am only 23 years old) but itis a heck of a lot better than never being able to be intimate with my own husband. I willnever stop visiting this website, even if I never have symptoms again. I can't telleveryone how this website has helped me get through this horrible ordeal...not to mentionthe low self-esteem and the depression that comes with it. I will keep praying thatsomeday there IS a cure for this and that it will not go unoticed any longer!
CommentMy husband and I are trying to conceive and are worried about the lubrication that I amusing. I am using astroglide and was wondering if this can affect his sperm. We have beentrying for about 7 months with no luck. Is there some kind of lubrication that would bebetter? Please repond if anyone has any ideas. Thanks..
CommentStacey, from what I understand (according to my dr.) Astroglide is the best lubricationto be using and it will not affect the sperm in any way.
CommentFor the woman who was looking for more information on a low oxolate diet...check outthe site for the Vulvar Pain Foundation. I am currently a member and I ordered all of theback issues of their newsletter. I have learned so much about this condition and all ofthe related issues. The VPF publishes a low oxalate cookbook which is relativelyinexpensive. You can order it through them. http://www.vulvarpainfoundation.org/
CommentThis is for Helen...I, too, get little tiny bumps, along with one persistent area ofredness, soreness and swelling, which sometimes appears as a bump, but sometimes appearsonly as a reddened area. The little bumps are tiny and red, only very, very slightlyraised. They are all around the vaginal opening, but nowhere else. They tend to feelirritated and they burn at times. I get these when I am having a VVD flare-up. When I amin "remission", they completely disappear. Also I have noticed that my besttimes (i.e., symptom-free) are mid-cycle, usually just before and during ovulation. Someof my worst times are right before and about three-quarters of the way through my period.This tells me that part of VVD must be hormone-dependent. Also, does anyone else ever getsoreness after intercourse? For me, it's almost like a bruised, battered feeling, and itcan last up to two or three days after intercourse.
CommentHi Regina: I get the soreness, itching, burning and a papercut feeling afterintercourse or even foreplay. Mine can last for days or weeks. It sucks!!!!! Having sexusually isn't worth the pain afterwards. I'm tired of not being spontaneous, having to runto take a hot bath afterwards and then worrying about having urinary urgency and frequencyafterwards!!!!!!!!!! Sue
CommentAafter 3 years of constant yeast infection diagnosis' , vulvodynia seems to be thecorrect one. Though not as serious symptoms as some have, my current Dr. has prescribed alow oxalate diet and the use of a baby product called Balmex for restoring moisture., Ithas given some relief and I post this info hoping to help someone else.
CommentFor the woman looking for info on the low-oxalate diet, the Web sitewww.branwen.com/rowan has the diet information. I've found that some of the foods high inoxalate don't seem to bother me, while others consistently do. Not sure what that means... For the woman looking for a support group in Pennsylvania -- try contacting the VulvarPain Foundation to see if they have one. You may have to join to get the info.
CommentIt is a relief to know that I'm not the only person with this condition. I wasdiagnosed with vulvar vestipulitis about 4 years ago after battling yeast for an entireyear. My OB/GYN sent me to a vulvar specialist and this specialist recommended the lowoxalate diet, no yeast infection creams...oral antifugal medicine only(diflucan), rinsingwith distilled water before and after urinination and amitrypilene(sp) an anitidepresant.Over time this seemed to help me and I finally went 3 years complelety yeast free. I stillhad an area that bothered me, but not a problem. Just recently I started all over again.I've been fighting yeast since October 99 and my other syptoms of buring and irritationhave increased. I don't have the terrible pain that some women are complaining of....soI'm thankful it's not worse. It's still frustrating....it seems to take over your wholelife. My husband and I cannot have a normal sex life. I'm hoping that if I am patientenough to keep up the routine my sypmtoms will subside! I am a christian and I know Godhas me in the situation for a reason. I am praying to Him daily for answers to thisproblem! Some of the other recommendations from the specialist was using liquid saop not barsoap, rinsing the area with DISTILLED water, the oxalate diet, toilet paper unsented withthe least amount of lint(I use Northern), cotton underware, loose clothing and theantidepessant. Currently I am on Diflucan 100mg twice a day for five days, low oxalate diet, lots ofvitamins. I'm praying this will clear things up! I'll be praying for all of you.Philippians 4:6
CommentI have been living with vulvodynia since 1992. I am 38 yrs. old and it began in my 8month of pregnacy with my 2nd child. I went through all the doctors you can imagine, andeliminated everything under the sun, until 1994 when I researched and diagnosed myselfwith Vulvodynia, then I found a women Gyno. who knew somewhat of this disease. I educatedthis doctor with material I found in Medical Journals and material from The Vulvar PainFoundation. I did not take part in any of the experiments, but I do pay dues once a yearand receive The VulvarPain Foundation Newsletters, which allows me to stay current aspossible with this disease. This is just a very brief explanation of what I went throughfor 2 full years. Since 1994 I have been on a low Oxolate diet and take 6 Citracal tabs (2- 3x's a day) and 6 Ox-Absorb tabs (2 - 3x's a day with each meal). This seems to hold theburning at bay. If I go off the diet or skip the vitamins I feel it. For the first 3 yearsafter starting this I would have relapes back to the way it was before and the relapswould last 1-2 weeks. Now relaps last only hours to 1 day, but still I am holding out fora Medical break through to cure this disease. If you can help me with anything furtherplease email me back. Thank-you.
CommentI can't take it anymore. I have had this intense itching for 6 months now and I amgoing out of my mind. I've taken so many medications which all seem to make me drowsy, butno relief for the pain or itching. How are you able to deal with the pain for so long?This is draining me of all my energy. I cry myself to sleep almost every night. What achange from the first 10 years I spent with my husband! What can I do to take my mind offthe incredible itching and burning? Is there any cream for relief of the itching? Help!
CommentI have suffered with vulvadynia for almost 3 years.l My burning is mostly in the labia,but it would move around to the rectum, and internally sometimes. I have been on the lowoxalate diet for over 1 year and had little result. My doctor prescribed Neurontin which Itake 300mg's twice daily. Recently, my doctor prescribed Effexor XR 37.5 mg's. It has madethe biggest difference!!! I take the Effexor once a day. My burning actually got worse inthe beginning, but after about 1 week I began to feel better. I don't have the chronicburning at all. I have to stay away from the high oxalate foods and drink lots ofdistilled water, but that usually takes care of it. I do feel sleepy at times, but I don'thave the horrible burning. I have been on this regimen since December 19, 1999. I'm notsure why this particular medication has helped, but maybe because it is the time releasedtype of Effexor. I had been on the regular Effexor 2 years ago, but I didn't have the sameresult. I pray that this might help another women suffering from this horrible condition.My family has been praying for me and I know that God hears our prayers. Keep the faithand keep searching for answers.
CommentI endured two years of the vulvodynia before finding something that finally worked toget rid of most of my pain. After two years my husband and I were finally able to makelove with only minimal pain. Now that I feel a lot better, I have begun to consider tryingto get pregant. We have a three year old. My vulvodynia started after my delivery. I amtaking 75 mg of Elavil now. I know that I need to be off of the Elavil before I getpregnant. I am so scared once I stop taking it, sex will be too painful again. Has anyoneout there stopped taking the med. to get pregnant? If so, did your pain worsen again whileyou were pregnant? Even if I do make it through another pregnancy, I am afraid that if Ihave another vaginal delivery, the epiosiotomy will never heal properly. I believe that itwas mainly the epiosiotomy that started my nerves to go crazy and never shut off. Myhusband and I would like to have another child, but we're not sure if we are ready tochance me getting worse again and therefore putting us back where we started about threeyears ago. Does anyone have any info. for us? Please e-mail me if you do.
Commentjust wanted to write and encourage you all. i have suffered from vvs for about 3 years,and after peaking in pain, anxiety and depression, i now am feeling a lot better. myproblem was exaccerbated by frequent yeast infections - every month i'd have one all monthexcept for when i had my period. now i haven't had one for 2 months, thanks to mynaturopath. i haven't found any medical treatment has worked but the naturopathic has beensuccessful so far. in terms of pain i have been doing pelvic floor exercises using avaginal probe - like the biofeedback but it is a manual type machine rather thanelectronic. six months ago i couldn't even tolerate a finger without a lot of pain, butnow i hardly feel it, even two is ok. i haven't been able to tolerate intercourse yet buti feel more confident with the progress i have made that i will soon. my husband still wants me to "get better", and so do i, but i am so gratefulthat i have gotten this much better! hopefully this will be the year that it all goesaway. it has been hard work, but i really encourage you all to not just stick to medicaltreatments - none have worked for me. for the yeast i took a medication called"parax", and had a no sugar/wheat/dairy diet. for the pain the pelvic floorexercises (essentially biofeedback), which i did with an excellent physiotherapist. it isworth exploring so-called alternative treatments, because you just don't know what'll workfor you. may peace be with all of us.
CommentI have heard there is a hormonal connection in regard to VV. I have recently been toldthat I have polycystic ovarian syndrome. Is there any correlation between this and VV? Ihave heard that in the majority of women, VV spontaneously goes away at some point. Willthe polycystic ovarian syndrome cause me to NOT be one these women?
CommentHi Ladies, Heather, one of the symptoms of Vulvar Vestibulitis Syndrome (VVS) is painfulintercourse. Usually, that is the only symptom I have. I also take calcuim citrate dailyto combat calcuim oxalate. The only food I have found that really bothers me a lot ischocolate. I know it's hard, I am with you all the way, I have been dealing with this for10 years and I have been with the same man for ten years, through the rest of high school,through college and now my early career. It has almost ruined my relationship...I can'tcount the times. Just a week ago, I went to see Dr. Stanley Marinoff at the Center for VulvovaginalDisorders in Washington DC. He told me that a vestibulectomy cured 85% of 200 women he hasseen with VVS. I am considering it, but I am scared. Dr. Marinoff has been researching andtreating women for longer than I have had VVS. He also writes articles for the NVAnewsletter. So I don't know why I doubt his abilities or his suggestion... Has anyone had a vestibulectomy? I need some advice, please. Lori, what is polycystic ovarian syndrome? Please feel free to email me. Thanks a lot. Tammy
CommentI fortunately have not suffered like so many of you. I have had some pain for the past8 months. I finally went to the doctor and was told that I had vulvodynia. I was put on alow oxalate diet, put on Diflucan, given vitamin b6, told to use oil and to continuallyrinse the area. Have any of the treatments worked for anyone? After reading thru the guestbook it seems like I'm going to have this for years. Do any of these remedies work? How toyou know if a particular food "triggers" you. I have a constant dulling pain andonly tremendous pain when I attempt any physical contact with my husband. I'm reallygetting down, I don't understand how, why, or where do I go from here. Can anyone give mesome advice/help? Right now I feel so overwhelmed and I don't know who to turn to. Thanks!
CommentI cannot tell you the relief I feel after reading about others with vulvodynia. Ithought I was the only one with this condition, and was convinced (and I think my Dr wastoo) that it was all in my head. I am 51 years old and have suffered with this conditionfor 3 years. It followed on from a bad yeast infection. After many many visits to myfamily physician and GYN, changing family physicians (no better), being under the care ofa dermatologist for almost a year with different creams (mostly steroids, which I now knowis the worst possibly treatment), antifungals, etc., I tried homeopathic treatment, butwith no relief there either. I then returned to my GYN in desperation and last April hadlaser ablation to the vulval area. It was very painful but when it healed eventually I hadrelief for about 6 months, then it all started again. I now understand that the lasertreatment destroyed all the nerve endings in the area and that gave the relief, but thenerve endings regenerate and now I'm back to Square One! The area that bothers me most ison one side of the vulva only, about an inch wide and about 2 inches longer, on theborderline of the pubic hair. Before the laser treatment I had a few small blood"blisters" in that area and a prominent blood vessel, but the laser ablated the"blisters" and now I only have the prominent vein (just near the surface of theskin, but not raised). For 3 years I had no name given to my condition (from any of the 5doctors I consulted), until a recent overseas business trip when I was in such agony thatI had to consult a GYN in a foreign country (my GYN at home had put me back onto cortisonecream when my flare-up started in Dec. again, but it wasn't helping anyway). This foreignGYN put a name to my "problem" immediately, and I was at last able to find thesewebsites and get more information and reassurance that I was not going insane. It was atremendous relief. I have stayed away from my GYN as I have no faith in him anymore, andmy family physician seems to be trying a little harder to understand me and my problemsince I've given him all the info I printed off of the Internet. He admitted that he hadnever had a patient with vulvodynia before, and had only heard the term referred to oncebefore at a medical conference, but knew nothing else about it! On reading all thematerial I gave him, he thought that it may be worth trying accupuncture, as there areindications that it is nerve-ending related. I have had 2 sessions of accupuncture (theaccupuncturist said I am the second woman he has treated with vulvodynia and the first onewas "cured"!), and think I have had some relief, but maybe it's wishfulthinking??? I will continue with the accupuncture for awhile and see if there's any morerelief. Luckily I have a loving, understanding and supportive husband (of 28 years),otherwise I think I would've gone crazy. I have tried all the self-help suggestions in thepast 3 years (cotton underwear and loose clothing, no jeans, no soap, washing underwear inboiling water only with no detergents, rinsing and drying the area with a hairdryer afterurination, aloe vera, etc.). In addition to the accupuncture, I am using Vitamin E oil 5-6times a day and taking antioxidents. I am about to read up on the low oxalate diet andwill try that as well. I am joining the VPF to get their newsletters. Does anyone have anyother suggestions or am I doing all I can for myself this way? I would be grateful for anyhelp or recommendations. I would also like to stress how comforting it has been to knowthat I am not alone, and am not psychotic. To all of you I offer my sympathy and love. Maya cure be found and may we all find the support and help we need to get us through this.Thank you for listening.
CommentI suffered from vulvodynia for the entire 6 years before my son was born. Itching,buring and painful intercourse. Nothing helped. When I got pregnant, it disappearedcompletely! I couldn't figure it out but was so grateful. Life was good again! I had avery rough vaginal delivery and I figured that it would come back with a vengence. Itstill was gone. I was thrilled! After 10 months my period returned (due to breastfeeding)and boom! The burning and painful intercourse and itching returned. I figured it must besomething with my period. I had done a lot of research on disposible diapers for my sonand found out they have very dangerous/irritating chemicals in them. I began to wonder ifmy sanitary napkins had the same chemicals in them...and YES they do. Dioxin. Since I wasusing cloth for my son, I decided to try cloth menstrual products.In 7 months, I have hadONLY TWO MINOR INCIDENTS SINCE SWITCHING TO CLOTH. I don't have any scientific proof. I'massuming I'm allergic to the chemicals in sanitary napkins. I just wanted to share withyou some relief that I've found. Maybe it will help someone. It is worth a try. Pleasewrite me if I can help you. I'm sure my vulvodynia is not gone forever, but it is about95% improved.
CommentFollowing on from my long story above, I forgot to add that I have had 2 biopsies ofthe affected area, one showing "non specific allergic reaction" and the other"possible lichen sclerosis". However, I do not have the classic symptoms oflichen sclerosis. Has anyone else had a similar diagnosis, and if so, were anyrecommendations given as to treatment? Thank you.
CommentDina, Yes I was diagnosed with lichen simplex chronicus. Which sent me to adermatologist who put me on very strong steroids. That was hell, I went from a painfulyeast infection feeling to burning and stinging so bad I could not sit down. I just don'tknow what to think anymore. I can't imagine my life this way forever. I just can't. I too stopped using regular pads and tampons and switched like one of the others to ormaybe it was you, I don't know to all cotton. It helps but not to the point of getting ridof the pain altogether. I even bath with only baking soda and wash my hair in the tub. Inever let chemicals touch my vagina. I don't think anything helps. Just to go to thebathroom and wipe it burns afterwards like the skin has been hurt and there is nerveinjury. I just don't understand this. I keep seeing these damn commericals for menserectile problems, well we women want some pleasure too. We have a problem who will listento us? I have tried PT too, I wanted it to help so I kept saying it was helping but reallyit never did. I can't imagine these doctors cutting our flesh off and thinking that willhelp. I wonder in the past did they cut off mens penises when they could not get anerections. NO. Sorry I read these letters and it tears me apart and I hear these women beg for helpfrom each other and there is no help. Here take a pill or let me cut you, these choicesare not the answer. I would think that these doctors that are so knife happy would seethat pretty fast. Has it helped anyone for longer then a year till the nerve endings getbetter? I just wonder, do we hear from anyone that the biofeedback that helped, or is thatjust a hoax too. I appreciate the fact that someone is at least trying but it isn'tenough. Not till we get a cure it will never be enough. Lyn j
CommentFinally, I find people who are going through a similar situation as me. I'm 24 yearsold and have been suffering with vulvar vestibulitis/vulvodynia for over 3 yrs. Mycondition started when I went to Acapulco, Mexico. I had pain free intercourse before Ileft for my trip. When I returned I had intense burning and pain upon intercourse. Ieventually went to the Dr. and found out I had a yeast and a bacterial infection. I'm oneof the few who had a Dr. say that the pain was called vulvar vestibulitis at the firstvisit. But, I was told that after the infections cleared up I would "be better".Well, 3 long years later I still have it. I never had a single vaginal infection beforethis, now I get them all the time, or I feel like I have one all the time! For some luckyreason I have a wonderful man in my life who has been with me since the beginning. We areeven talking marriage this next year. I have been through creams, Amaryl (with the thoughtthat HPV was the cause) anti-depressants, steroid injections, neurontin, etc... I feelthat surgery is the only thing left to try, but I do not want to do it because I hear ofall the horror stories. Thank-you for allowing me to communicate and vent to people likeme. Many tears have been shed over this.
CommentI have had generalized vulva pain for the past 7 years. Tric-cyclic anti-depressantshelped a bit, but I have trouble with the side-effects. Biofeedback with the Glazertechnique has helped ( I was treated by Dr. Libby Edwards in Charlotte, NC), but notgotten me beyond a constant pain level of 3 (1-10 scale) I am currently doing Reike, (energy work), but so far feel this has made the area alittle swollen and therefore a little worse. Does anyone have experience with this? I havedone accupuncture with 2 practitioners, but the only improvement was that my periodtemporarily went back closer to the 28 days that I had always had. Sometime since thevulvodynia started my period happened every 24 days! My most recent period was 28 dayswhich I attribute to the Reike. I am 41 and would like to get pregnant. I would appreciate hearing from anyone withgeneralized vulvadynia who has gone through a pregnancy. Thanks
CommentI am 28 yrs old and from the UK. I have been suffering for eleven years. The first fiveyears I was treated for numerous yeast infections (that were never there). I can remembercurling up in my bed, at seventeen, sobbing because one of the creams stung so badly -then I was told that I 'wasn't helping myself' when I refused to use that cream again. Iwas finally diagnosed as having vestibulitis six years ago and given xylocaine and asteroid cream. Fortunately I have a wonderful husband who has always 'tolerated' my reluctance to beintimate, but who now - after reading some of these pages - truly understands the painboth physical and mental. But it is a strain on the relationship. I feel dysfunctional asa woman and a failure as a wife - that makes me very hard to live with sometimes. After reading some of your messages I decided to go back to my doctor. He hasprescribed me the lowest dose of amitriptyline possible - as a 'last resort'. He actuallyshrugged his shoulders as if to say: it's your problem, deal with it. Thanks doc. Thank goodness the US is taking the problem more seriously - and with web sites likethis I can keep informed. I am saddened that so many women are suffering, but relievedthat I am not crying alone and, most of all, IT IS NOT ALL IN MY HEAD. Thankyou all foryour time. xxx
CommentI would like to talk to anyone who has taken amitriptyline while breastfeeding. I amstarting this medication today and have found conflicting information on its effect on abreastfed baby. My daughter is one year old but still nurses quite often (3 - 4 big feedsmostly at night). PLEASE, PLEASE E-MAIL ME AT LUCRETIAROCK@MYBC.COM. I don't check thisguestbook very often so please use my e-mail address.
CommentI have struggled with vulvodynia for 16 years. I am 34, been married for 8 years, andhave recently started my latest round of treatment. My doctor is my sister-in-law and shehas brushed me off before by saying my pain was "all in my head" or "maybesomething is going wrong with you and your husband". I went to another doctor whotreated me for HPV and made me us that terrible stuff that burned like hell. In 1995, mydoctor did a vestibulectomy but the pain didn't get any better. Over time, I've had pain-free sex and painful sex. It was hard to predict. Itdefinitely has affected my marriage to the point where most of the time now, I try toavoid sex. Anyway, faced with the demise of my marriage and my self-esteem, I decided to try againand demanded that I be heard. She has since put me on Elavil (100mg a day) and she'sreferred me to a physical therapist who will be doing biofeedback. One of thecharacteristics of this disease is an overly taught pelvic floor muscle. At our firstappointment, my PT told me my pelvic floor muscle was weak. Has anybody out there everheard of this? I have exercises that I'm doing to help strengthen the muscle, and I'mgoing to try the low oxalate diet. Any thoughts about these issues would be appreciated.I'm so glad to have someone validate my pain and not dismiss me by telling me there isnothing that can be done for me.
CommentI'm at work and I do not have a private e-mail at home yet so I do not want to leave mye-mail address, but I was wondering if anyone out there has consulted with a Dr. JessicaThomason from Milwaulkee, WI. And if you did or do, have you had good results. I've beenthinking of seeing her but it would be a 6hr. drive each way to see her, so it would be abig committment to follow through with it. I've been through so many Dr's. that I want topick my next one wisely. I would appreciate any kind of feedback out there from anyone whoknows of her or has seen her. Thanks
Commentrebecca
Commentrebecca I saw Dr. Thomason 15 yrs ago- before doctors seemed to know about vulvodyniaor vestibulitis. Although she was not able to help me then, she was the first dr who tookmy complaints seriously. I found her very knowledgeable and extremely empathetic. Shortlyafter I started seeing her she moved to Milwaukee and I stopped seeing her. I know this isnot much help but I do want you to know I thought very highly of her. My own symptomsabated for a long time but did come back awhile ago and I have considered going back tosee her. If you do decide to see her I would appreciate an e-mail telling me whattreatments she is using now. Thanks lisa
CommentRebecca and Lisa, I am currently seeing Dr. Thomason and if you'd like to e-mail me at the above address,I'd be more than happy to fill you in on my experience with her and her staff up to thispoint. They're wonderful people. Kim
CommentI was diagnosed with Vulvodynia about 1 year ago.. I am now pregnant with our firstchild ( which is a miracle because me and my husband never have sex) I have mentioned tomy OB/GYN that I have this disease and he seemed to act like it was no big deal. I haveheard that giving birth Vaginally can cause this condition to worsen, I can not imaginehaving more pain than I already do. Does anyone know anything about this.. and maybe a waythat I can approach my doctor about this. PLEASE HELP.
CommentThis is for Jennifer who was looking for a Dr. in the San Fran area back in October . .. I just saw a Dr. Amy Huibinhoa at the Alta Bates medical center. She diagnosed me withVulvar Vestibulitis and refered me to the Psysiotherapy Associates who do therapy forpelvic floor disfunction and are apparantly very knowledgeable on this subject. You canreach the physiotherapy associates at (415) 346 1611. Does anyone know of any other bayarea doctors that can help with vulvar vrstibulitis?? Help much appreciated!!!!
CommentDr Glazer please put the 10th guestbook back online. These entries contain importantadvice and info that can help us. Please, do this! Thank you.
CommentI don't know where to begin! I'm just glad to know I'm not alone! I have tried so manythings this past year, many of them mentioned in the above guestbooks. My next step is thelow oxalate diet. My obgyn wants to send me to Mayo, but, not sure that will help! Theysuggested cordizone shots to the area. Boy, that was a trip! It made me worse! I have alsobeen on yeast free diet for 10 months, which has not helped. I am 53 years old and thankGod everyday for my husband of 30 years. He understands my pain and even though I know sexis important to him, he has been great! Anyone out there have pain that goes up thetowards the spine and it feels almost like a bruse when putting pressure, like sitting orlying down. When the vaginal area is at its worse, so is the "pain in the butt"!Take care all you VV people out there and thanks for listening.
CommentIt is so good to hear from so many other women who are experiencing some of the sameproblems. I have been married for 39 years and always had a very good sexual relationship.I developed vulvodynia in May of 1998 following surgery for some abnormalities of thecervix. I was diagnosed with vulvodynia in Sept of l998. The Dr. prescribed a topicalanthestic cream to use during intercourse. This worked fairly well. I took paxil for twoweeks, but couldn't tolerate the side effect. I have had diabetes for the past 17 years,and fibromyalgia and bronchiectasis for the past 5. In August of l999, I fell stradle of ahog panel. For those of you non farm people, this is a panel consisting of vertical andhorizonal ridgid wires. I completely lacerated the entire area. I went to the theemergency room and was stitched in the entire area. The pain for the vulvodynia was lessin a matter of hours. The Drs aren't sure if it will come back, but to date THERE IS NOPAIN. I don't think that I would have the nerve to try it again--but it worked for me.Hang in there and don't lose heart.
CommentI'm back again. Thank you for your entries. There are so many of us who suffer insilence. It's nice to know I'm not alone. I have been fighting chronic yeast infections,went on a low oxalate diet, taking antidrepressants and used just about every cream andjelly out there. I have had actual blisters/ulcers form on my clitoris. Ouch! That'spainful. My doctor says it's because my skin is so sensitive. I've been tested for Herpestwice and they have come back negative. Has anyone experienced this and how was ittreated? Please e-mail.
CommentThe survey I just took was kind of hard to do as I am taking a pain tablet called,oxycodone-5mg. I take 2-3 during the day and l hour before intercourse I take 2 of them. Ianswered the questions as to what I was like without the oxycodone. I have never beendiagnosed with any type of name. My gynecologist has no idea as to why it hurts me somuch. He thinks it has to do with my lack of hormones. I use vaginal Estrace. 1mg.everyother night. I also have inerstitual-cystitis and that also was thought to be part ofthe blame, as well as my sexual problems in the past. I also take 30mg. of Paxil and 15mg.day/night Buspar. Even with taking the oxycodone I still have the sharp knife likeshooting pains in my vagina and abdomen. It is at least, tolerable and I am able to haveorgasims. My husband is a very patient man and he is the only man I have had orgasimswith. I have always had pain with intercourse. The last 10 years have been the worse,however. Sometimes I thought I just couldn't take it anymore. I would stay up, at night,until I knew my husband was sleeping. Just so we wouldn't have intercourse. At that timeit was 2 times/month and then I didn't even want it that much. Now with the oxycodone, weare able to have intercourse about 2 times/week. Even though it takes 10 minutes just forhim to enter completely into my vagina, I am at least able to somewhat enjoy it. I reallythought something was wrong in my mind with this problem. My friend gave me an article inthe Womens Day magazine which talked about it. I have always done the Kegel exercises andwas proud of how tight I could squeeze. Little did I know that I was hurting myselfinstead. I have no idea of how to turn the clock backwards and hope that you can give mesome advise. How should I approach my doctor with this information or is there somethingyou could email me to give to him? With the problem of the cystitis I have is there anywayto help me? Also, I have a continent ileostomy. I have had that for 22yrs. 24 years ago, Iwas diagnoised with Ulcerative Colitis. I had it under control until I became pregnant. At2mth. into my pregnancy I ended in intensive care and 20 lbs. lighter and had to have mylarge intestine removed. After my daughter was born I went to Cleveland Clinic and had myrectum removed and they made a pouch with part of my small intestine. I have been happywith the results. Please email me with any advise you could give me. Thank you, I hopethat I can get relief of the pain. At least during intercourse. I don't think people couldreally ever understand the PAIN one goes through with this. Tena Summerville 1228 GrantAvenue Erie, Pa 16505 Email Add: tesumm@juno.com Please Help Me!
CommentThe survey I just took was kind of hard to do as I am taking a pain tablet called,oxycodone-5mg. I take 2-3 during the day and l hour before intercourse I take 2 of them. Ianswered the questions as to what I was like without the oxycodone. I have never beendiagnosed with any type of name. My gynecologist has no idea as to why it hurts me somuch. He thinks it has to do with my lack of hormones. I use vaginal Estrace. 1mg.everyother night. I also have inerstitual-cystitis and that also was thought to be part ofthe blame, as well as my sexual problems in the past. I also take 30mg. of Paxil and 15mg.day/night Buspar. Even with taking the oxycodone I still have the sharp knife likeshooting pains in my vagina and abdomen. It is at least, tolerable and I am able to haveorgasims. My husband is a very patient man and he is the only man I have had orgasimswith. I have always had pain with intercourse. The last 10 years have been the worse,however. Sometimes I thought I just couldn't take it anymore. I would stay up, at night,until I knew my husband was sleeping. Just so we wouldn't have intercourse. At that timeit was 2 times/month and then I didn't even want it that much. Now with the oxycodone, weare able to have intercourse about 2 times/week. Even though it takes 10 minutes just forhim to enter completely into my vagina, I am at least able to somewhat enjoy it. I reallythought something was wrong in my mind with this problem. My friend gave me an article inthe Womens Day magazine which talked about it. I have always done the Kegel exercises andwas proud of how tight I could squeeze. Little did I know that I was hurting myselfinstead. I have no idea of how to turn the clock backwards and hope that you can give mesome advise. How should I approach my doctor with this information or is there somethingyou could email me to give to him? With the problem of the cystitis I have is there anywayto help me? Also, I have a continent ileostomy. I have had that for 22yrs. 24 years ago, Iwas diagnoised with Ulcerative Colitis. I had it under control until I became pregnant. At2mth. into my pregnancy I ended in intensive care and 20 lbs. lighter and had to have mylarge intestine removed. After my daughter was born I went to Cleveland Clinic and had myrectum removed and they made a pouch with part of my small intestine. I have been happywith the results. Please email me with any advise you could give me. Thank you, I hopethat I can get relief of the pain. At least during intercourse. I don't think people couldreally ever understand the PAIN one goes through with this. Tena Summerville Email Add:tesumm@juno.com Please Help Me!
Comment
CommentHi everyone. I am relieved, yet confused after finding out that I have VulvarVestibulitis. I was finally diagnosed about 2 months ago by a gynocologist, though I havebeen having symptoms for about 5 months. Currently, I am on a low oxalyate diet and mygyno prescribed a topical cortisone cream called elocon. It is not helping. I was takingn-acetyl glucosamine and msm with some results. Unfortunately, I think that I was allergicto one of them. I wound up in the emergency room with chronic stiffness in my legs, arms,and vaginal area with strange muscle twitching. I would like to know if anyone else hasexperienced pain and cramping in the legs. I have figured that maybe it was an allergicreaction to one of the supplements because I did not have these symptoms until about after1 1/2 weeks of taking them. The twitching and pain goes all the way to my toes. It is mostchronic in the back on my legs in the area where I sit. I feel very alone with this whole thing and have found it very hard to accept it. Sexwith my boyfriend is very painful, lucky he is very patient and understanding. I feelguilty sometimes that he is with me, due to the fact that we cannot have sex often. I amscared that if we ever break up nobody else could possibly love me with this condition.Does anyone else feel this way. Currently, I see a therapist to help me with theseinsecurities and the loneliness I feel in this. I am 26 and live in Los Angeles. Does anybody have any advice for me, or know of anydoctors who specialize in vulvar vestibulites here in LA? Or physical therapists here whospecialize in biofeedback? Even if you do not know anyone in LA, please write me and letme know what works for you. I would really like to talk to others with this condition. Ifeel very alone and depressed, but I will never give up! Please help. Thank You, Tracie
CommentI suffer from vulvar vestibulitis and lichen schlerosis. The lichen is what causes theburning and itching. I was on Estrace cream, Temovate cream, Zoloft, and Trazodone. I havehad this since January 1999. The medications worked for me, but didn't cure it. I was toldabout a great doctor in Milwaukee, Wisconsin. I had to have the surgery called vulvarvestibulectomy about 6 weeks ago. I am very positive about the outcome. There is no pain,and it is suppose to get even better as I heal from the surgery. I would stronglyrecommend calling this doctor and see what she can do for you. You may not even need thesurgery. Medication may do the trick. If you are interested in the doctor's name pleasee-mail me and I will tell you a little more about it. There is relief out there.
CommentRebecca, I am currently seeing Dr. Jessica Love Thomason. She is a very good doctor. Ihave been seeing her since September, and she tries her best to make me feel morecomfortabe. I am so relieved to hear of someone having heard of her. I have to get surgeryon February 29th, and I didn't know what to think. E-mail me if you'd like to know more.
CommentI am at work and I do not have e-mail at home. I have burning and soreness in thevulvar and rectal area for 1 year and 4 months now. It all started in October of 98. Ithought I had a yeast infection and my gyn prescribed medicine over the phone. When theburning and discomfort did not go away I went in for a check up. Of course he foundnothing at all wrong with me and gave me some cream. I have had so many in the past yearand none of them worked. If anything they just made it worse. I have been to the gyn about11 times, a dermatologist, my family doctor and an allergist. I have had std tests, 3blood tests, urine tests etc. The last doctor I saw (allergist) thinks it is the shingles.I did have shingles when I was 25. It was from stress. I was very stressed when thisstarted as well. (Started new job, planning wedding and bought a new house) My mom alsosaid that I had the chicken pox very bad in the vaginal area. Shingles can cause postherpetic neuralgia of a nerve, so it makes some sense anyway. The acyclovir is making adifference. I have been feeling some relief. Some days I feel fine. Some days it is veryuncomfortable to sit at my desk at work. I have also had antibiotics, antidepressants,many creams , every vitamin under the sun and I try to avoid high oxalate foods. I getscared to eat certain things. I do not use soap, only dove everywhere else. I use Northerntoilet paper, which does make a difference. I wash all my cotton underwear separately inhot water without soap on a double rinse cycle. I hang them to dry. It has been an awfulyear. I got married in June of 99. My husband has been better than great about thisordeal. I feel like I have been on an emotional rollercoaster. Some days I feel sohopefull. Then others I just cry and wonder why? I am going to be 28 next week. I feellike my life has been totally taken over by this horrible disease. I am sure you all knowhow I feel. I also get angry because doctors do not know. I will write again soon. GoodLuck to you all.
CommentIn reference to Vernie's note... I also tried a yeast free diet for 2-3 months along with using oral nystatin andnystatin cream which are antifungals. These did not make a noticeable difference. However,the nystatin cream does sometimes make the area feel better. I notice that I sometimeshave brown spots on the tops of my inner thighs and the cream will take this away. Doesanyone know what these spots may indicate....lichen sclerosis? In regard to pain up your spine, this sounds to me like it would be nerve related andthat you may want to explore biofeedback.
CommentIt's been a while since my last entry and I just finished reading the 11th guestbookentries. I feel so sad for all of those who have either been misdiagnosed, recentlydiagnosed or have as of yet, not found any treatment plan at all. As some of you may haveread in my past entries, I have been in pain since June of 1999 and have sought aninfinate number of treatments from an infinate number of doctors of varying specialties.Thus far, I have not been cured but am quite certain that good days are possible. I havevulvodynia/Pudendal neuralgia and my pain migrates from vulva/urethra to the rectum/anusand coccyx areas. Constipation or gas has consistently brought about increased pain andalmost always resides in the rectum. I take flaxeed each morning and place about ateablespoon in my oatmeal or cereal though I've heard of others who mix it into juice orwater. It is supposed to keep the fibre content in my system high and it's natural. I hadtried Colace(stool softener) for a while but am concerned about becoming dependent onartificial stimulants. We all have enough DRUGS in our systems as it is! I have recentlystarted P.T. with an extremely knowledgeable and caring woman here in S. Florida. Myinitial consultation/exam was a disaster as her internal evaluation caused a SEVERE flareup and I had regressed in symptoms after that. Ever since, we have focused on myofacialmassage, gentle exercises to open the pelvic and hip flexor areas, as well as magnetic,deep heating treatments. Christine reminds me that we have WORK to do and that my pelvicfloor is beyond spasm....it's in a complete contraction and is not even moving at all. Ilook forward to my visits with her, knowing that we have a goal and that she trulyunderstands the fear and apprehension I express in our sessions. I am sorry that there areso few possibilities in terms of us being able to find information and/or hope in ourstruggle to be heard and for us to maintain hope. I too, have benefitted from theguestbook and can recall my initial reaction to reading the very first entry in theguestbook and feeling complete horror, wanting to DIE and end my misery. I've been throughso much in my life and have never felt so disheartened and hopeless until thatday/evening. Many days and nights have passed since that time. So many of you have had somany more years of pain to contend with and your families should be credited with havingstood by you all of these years. I don't know how I could deal with a spouse or mother whocomplains, cries, worries and is so angry at LIFE for ROBBING them of the happiness weSHOULD be feeling ...just because....I am about to go onto a higher dose of Effexor srtonight.150mg. from 75 and will continue taking the 75 Desipramine. I apply Moisturel tothe area after each time I void, use unscented goats milk soap and have actuallyexperienced several good days up until a few weeks ago. Perhaps the higher dose of Effexorwill bring me back. These are the first meds that do not have any side effects and I'llcontinue until......who knows? The libraries do not have books on the subject, the gynos.only know some of what we need to know and the bookstores have zero information(of value)for any of us. I have been compiling letters and notes from women around the country andbeyond and am inspired to compile a book that could provide women like you and I thevalidation and hope we DESERVE. If anyone is interested in sending me theirstory,including both the positive and negative experiences related to treatment and yourpersonal reflections and feelings, I would be willing to present a rough draft..(.witheach submission that includes permission to use your story in the event this should cometo fruition), and use proceeds to further research in Vulvodynia/pelvic pain arenas. Anysuggestions, comments will be wonderful. I am not a writer though I enjoy writing fortherepeutic and personal purposes. I have a Masters degree in Marriage and family therapyand have a particular interest in presenting the EMOTIONAL aspects that are and have beenaffecting women with this problem. I think that dr. Glazer's article in the last NVAnewsletter provided many of us with the realization that Vulvar pain is much greater thansimply a PHYSICAL entity....we need our lives back; sex, intimacy, friendship, socialcontacts...the ability to SIT and talk, watch a movie, go out to dinner. I look forward tohearing from anyone who wants to respond to my letter. Your input is invaluable. Writinghas also been proven to be highly therepeutic for people in expressing feelings etc...related to traumas of varying etiology. Simply writing to friends I have met through thesesites, has helped me cope with the daily obstacles and fears associated with theVulvodynia. Thank you to everyone I have met thus far and I welcome my future friends tomy e mail address. I will provide my home address to those who chose not to sendinformation on the internet and will gladly respond to any mail I receive from you in themail. Good luck to each and everyone of you. You are all trying to the best of yourabilities. Focus on your strengths and be grateful that most of us have the ability toSEE, WALK,TALK and FEEL so much compassion for one another.
CommentDr Glazer please it is possible to put 10th guestbook back online. 10th guestbookcontains the list ( with adresses and phones) of Clinics for Vulvar Desease in USA andEurope. I need the "Europe list". thanks.
CommentTo Jan: Thanks, I have been thinking about biofeedback for pain. I will have to do myhomework and find someone in my area. I am also on Amitriptyline for the nerve pain. Ifnothing else, it helps me sleep. The only after affects to me is groggyness in the am, butsoon goes away once I am up and at'um. A nurse friend of mine suggested Calamine Lotionand actually it helps sooth and cool. It's no cure, but helps for the moment and can beused often. I carry it with me everywhere. My husband and I have decided that when I amreally stressed, I seem to get worse, so maybe the Amitriptyline will help there too.Here's hoping for all of you, some good days! Vernie
CommentHere is a website of Vulvar specialists around the world.
CommentHere is a website of Vulvar specialists around the world.
CommentMy husband and I have been dealing with my symptoms of vulvodynia for most of our 1year and 4 month marriage. I mistakenly thought it was all in my head, since the pain wasusually just when attempting sex. I kept thinking that it would go away. But two monthsago, making love became so painful that we quit altogether. My normally high sex drivedisappeared and just the idea of sex would make me sick to my stomach. I finally decidedto do some research on painful sex and found this site. I went to a doctor yesterday at awomen's clinic here in Eugene, Oregon. I told her that I was wondering if I hadvulvodynia. She examined me (OUCH!) and confirmed it. She put me on Lidocaine andhydrocortisone, telling me if that doesn't work she might try a steroid cream and/orElavil. She has had good results with Elavil on a patient much worse off than I. I triedthe lidocaine before sex today and sex was probably 80% better although I am now sorebecause the lidocaine wore off. I am going to keep up the search for things to help thecause and not just the symptoms of the pain. Any advice on how to deal with all thepsychological stress would be helpful. A big thanks to all of you on this site. If itwasn't for you , I might still think I was imagining everything! Feel free to email me.Any advice is welcome!
CommentIt all started around 5 months ago. I began to itch so I was treated for a yeastinfection then when that didn't work I was treated for vaginosis,.then another yeastinfection cream, by this point I couldn't wear underwear, have sex and walk evensometimes. I was depressed ,stressed out and alone. My relationship with my fiance wasgoing downhill also.He just couldn't understand what was wrong. About 2 months ago my Dr.gave me a paper on vulvodynia and told me to stay away from the foods on this list. I amdoing so at this moment but I'm still in lots of pain! Now its not just an itching , itsalso a burning sensation. What am I going to do? This has changed me horriably. I cryconstantly. I have so many questions and no one to answer them. Can ayone help me? I alsohave stayed away from everything on that list and now I'm run down because there seemsthere is nothing I can eat. Today is Wednesday and Friday I have another app, with my dr.what should I ask for , for some painfree days. This is taking its toll on me and myfamily. I pray and hope for a cure for every person who goes through this pain. Pleaseanyone with any answers and knows of any Dr. in Iowa who specializes in this please writeback. Thanks- daisey23
CommentHI! I have had vulvodynia for 10 years. I had some good years and some horrible ones. Iwas thinking about trying Neurotin. A friend used it for nerve pain and it worked for her.Can you give me any information on this drug and its effectiveness with vulvodynia? PleaseI am really in need for something to work. Thank you for your help!
CommentI have finally after 5 long years been diagnosed with this condition. My obgyn hasstarted me on the antidepressant, oral diflucan for 7 days, vaginal yeast cream for 7 daysand a topical antifungal for the outside. I have read alot of entries and am reallyrelieved and saddened on how many of us have had to suffer so long and to only find thatthere is no cure??? YET!!!!!! I am going to try thr diet and look for a physiotherapistand try the bio-feedback therapy. My symptoms have been the constant burning, occasionalitching, raw and hot. Before I was diagnosed I used replense moisture inserts and foundthat if I used those everyday or every three days, basically constantly, I found the painwould go away or would be bareable enough that your vagina was not on your mind 24/7 ha!ha! No laughing matter I know but I would rather have other things on my mind than theconstant pain. If you guys know what I mean!!!!! I also have had chronic yeast infectionsymptoms although the tests were neg. and have had a constant battle with uti's tests werealso neg. The only thing I found to take away the funny feeling in the urinary tract wasAZO or Uristat. However, I am going to the urologist to be checked for cystitis which canalso be in combo to this condition. WONDERFUL!!!!!! As for my husband, he is understandingto the point that we don't base our relationship by how much sex you get a week! ha! ha!God bless his heart. With this painful conditions he's happy if it is not longer thanthree months. Poor thing! It is stressful enough not to feel normal. Meaning spontaneous,trying NEW things etc. I'm thankful now I can vent to bending ears who share the samediagnosis. LAUGHTER IS THE BEST MEDICINE FOR WHAT AILS YOU!!!! So if we all stay togetherwe WILL HOPEFULLY find a cure. Thanks for listening. Feel free to e-mail me anytime. I'm afirst learner so I could use the support and advice anyone could give.
CommentThis message is to Joanna at teeterbee@excite.com: I was very pleased to get your e-mail and did respond but I can't send or receive anye-mail right now since the system crashes earlier this week. Just wanted you to know thatI wasn't blowing you off. I'll be writing just as soon as I can. Kim
Commentalso had MRI's,Cat scans, ultra-souns, berrium enemas, upper GI tests, a camera insetedinto my bladder, four separate laproscoptic surgeories, was told I needed a therapies, dida year in PT, all to no avail. In sifting through the internet, I found a specialist inthe Boston area, and they refered me to Dr. Benson Horowitz. I love him he's great. Veryopptimistic. I've read a couple of other woman were told the same as I was, that this wasa neuro-fiber transmitor defect, and it could be treated with amitriptiline. I started at25 mg. and am now up to 125 mg. I have had some relief, and I also have my very bad days,around ovulation, just like many of you. My doctor assures me that I will make a completerecovery especially since the medication has already relieved my irritable bowel syndrome,my insomnia, and me panic attacks. The side affects were hard to get used to, especiallynow, because I find myself lightheaded some times, even when I'm sitting still. It is thefirst real hope I;ve had in along time. Most of my pain was associated with intercourse upuntil about 2 years ago, then thought I got a UTI only to find that there was noinfection, and I've been on a very vicious merry-go-round since then. I wish I could offersome hope or explaination, or comfort but I am myself fighting depression because of allthis stuff, but I am very grateful that this guest book exists. I have felt so freakishand loney for so long. It's kind of funny after being told for so many years that therewas nothing wrong with me, that I most likely just didn't like sex, or maybe really didn'tlove my husband and that is the reason having intercourse hurt, you start to believe whatthey are saying, and the funny part is I couldn't figure out how other women actuallyenjoyed sex! I really thought that this was just something that happened after havingchildren, and I could not figure out why others still enjoyed it.
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CommentI got cut off during my first entry. I have compared notes that many of you written,and there is a common link between some of us, and that is a broken tail bone, or injuryto our backs. When I first experience the full blown vulvadynia I too expected the tailbone. I went to my chiropracters. He actually did an internal and found that my tail bonehad healed in the wrong position. We decided to try manual manipulation of the tail boneto bring it back down to where it should be. He also woulds push the sacrial nerve awayfrom the area. When he was done, I would feel complete relief from the burning pain, Anddefinate relief for the abdominal pain. Like alot of you my insurance ran out, because youare only allowed a sertain number of visits a year. I am convince taht my tail bone playsa very big role in my pain and have decided to go back, regardless of the cost. I willpost again and let you all know of the results. Please try to remain opptimistic, I dorealize how hard that is, believe me I've been at this for so long, but I do agree thatthe medical community needs to be educated about what we're going through. Please everyonekeep in touch.
CommentI have also recently been diagnosed with vestibulities.Are there there any cures insight> the ignorance of the OBYGN is un believable. Where can I get help.Even though Igot the diagnose I was not offered treatment of any kind. Only a drug,called Dyclone 1%,which is no longer on the market. It was manu- factured by AstraZenaca, Wayne PA.Is therea MD in the NYC area I can contact. Hulda
CommentI have had burning and irritation in the vulvar region for 3 months. During that time,I went to two obgyns and was treated with metrodizanol and cleocin for bacterial vaginosisand floxin for ecoli in the vagina. The symptoms did not improve. Then I went to see Dr.Stuart Fowler at the Mayo Clinic in Phoenix, AZ. He specializes in vaginal infections. Hebelieves I have contact dermatitis rather than vulvadynia because the pain increases whenI sit for long periods. He gave me this list and said it is helpful for vulvadynia andcontact dermatitis. Hope it helps: 1) Use Oilatum Unscented soap 2) Wear cotton underwear3) Wash underwear in Cheer Free detergent. Do not use fabric softeners. Rinse underweartwice. Do not use anti-cling agents such as "Bounce". 4) Wash hair in the sink.5) Use unscented white toilet paper such as Northern Unscented. 6) Do not apply perfume,powders or spermicide to vulva. 7) Use unscented tampon, pads; preferable 100% cottonpads. 8) Shower in morning followed by blow drying the vulva with hair dryer on coolsetting. Repeat blow drying of vulva in afternoon if circumstances permit. 9) ApplyVanicream to vulva at bedtime. If this stings, stop. 10) Rinse with Domeboro's solution(keep in squirt bottle) after voiding and swimming. This solution provides temporaryrelief of minor skin irritations due to poison ivy, insect bites or rashes caused bysoaps. 11) Use Astro-Glide for lubricant during intercourse. 12) Attempt to"defocus" from vulvar symptoms. 13) Be patient, onset of improvement generallyrequires 4-6 months. He also found that I had a yeast infection so prescribed diflucan every two days fortwo weeks and then once a week for two months. Thank you for all of your stories andinformation. God Bless you!
Commentdoes anyone know of a pt in the vt area or close to it that offers the biofeedback?Iused to go to Keene NH but my therapist left to work somewhere else.
CommentI am from NEW ZEALAND and am currently visiting friends in ORLANDO, FL. for a fewweeks. I have suffered from vestibulitis for about 4 years and was wondering if anyoneknew if there are any specialists in Orlando that I could see. Furthermore, if there areany New Zealanders reading this that know of any specialists in NZ that are worth seeing,please let me know.
CommentTammy, I don't know how far this would be from you, but I know of a therapist at the BostonMedical Center by the name of Laura Berman. She runs a Women's Sexual Health Clinic thereand if you're interested in contacting Laura, her direct phone number is 617-638-8959.
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CommentGOLDILOX THANKYOU FOR THE NAME OF A P.T., BUT I ALSO HAVE ANOTHER QUESTION FOR THOSEWITH A TAIL BONE OR SPINE INJURY. I AM WORKING WITH A CHIROPRACTOR WHO IS TRYING TOSTRAIGHTEN MY TAIL BONE. AT FIRST WHEN I STARTED TO RESEARCH MY PAIN, I DISMISSED THE TAILBONE THEORY BECAUSE I HAVE HAD THIS PAIN IN ONE FORM OR ANOTHER SINCE BEFORE I WASSEXUALLY ACTIVE, SUCH AS JEANS WOULD IRRITATE ME AND SITTING ON A CUSHIONY SEAT WAS ALSOUNCOMFORTABLE, AND MY MOST RECENT TAIL BONE INJURY HAPPENED ABOUT 10 YEARS AGO, BUTTHINKING BACK I REMEM-BERED FALLING OFF OUR ROOF ON TO A STUMP BELOW DIRECTLY ON MYTAILBONE. WHEN YOUR 15 YOU HEAL QUICKLY AND MOVE ON. I BELIEVE THAT IN MT OF MY EARLIERPOSTING I MENTIONED THAT I WAS HAVING MY TAILBONE FIXED. IT IS A PAINFUL AND UNPLEASANTVISIT TO THE DOCTOR BUT AFTER MY APPOINTMENT IS OVER THE ABDOMINAL PAIN IS GONE AND THEBURING GONE BY ATLEAST 95%. IT DOESN'T LAST LONG BECAUSE MY TAILBONE IS SMASHED SO BADLYTHAT IT IS ALMOST PARALELL WITH MY SPINE AND THE LIGAMENTS HOLD IT TO TIGHTLY, AND THEMUSCLES ARE TIGHT AROUNG THE LIGAMENTS, AND OFCOURSE THE MUSCLES IN THE PELVIC FLOOR AREIN CONSTANT SPASM, DOING A JOB THEY WEREN'T INTENDED TO DO. MY THOUGHTS ARE THAT IF WE CANREPOSITION THE TAILBONE THEN THE MUSCLES CAN THEN RELAX, AND THEREFORE NO MORE SQUEEZEDNERVES, THEREFORE NO VULVADYNIA. MY CHIROPRACTOR IS THE ONE WHO BROUGHT TO MY ATTENTIONTHE DIFFERENT KIND OF PAIN THAT A BROKEN TAILBONE COULD CAUSE. I'M SORRY I AM BEING SOWINDED BUT I JUST WONDER IF ANYONE HAS EVER LOOKED INTO THEIR TAILBONE INJURY AND WHAT THERESULTS WERE. IF YOU HAVE ANY INFORMATION OR ADVICE I WOULD REALLY APPRECIATE IT.
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CommentHAS ANYONE ELSE OUT THERE TRIED TO FIX THE TAILBONE OR SPINAL INJURY? IF YOU WOULD LIKETO RELATE YOUR EXPERIENCE AND RESULTS I WOULD REALLY LIKE TO TALK TO YOU.
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CommentHAS ANYONE WITH A TAILBONE INJURY TRIED TO HAVE IT FIXED AND WHAT WERE THE RESULTS. IFYOU HAVE ANY ADVICE FOR ME I WOULD REALLY APPRECIATE IT.
CommentFor those of you whose doctors are prescribing steroid creams, please be careful. Iknow of one woman who has been significantly helped by steroids, and many (includingmyself) who have suffered long-term worsening of pain because of them. They act asanti-inflammatories, but they also thin the skin and can make sensitive skin much moresensitive. Also, to Tammy who was considering surgery--again, be careful. Some women are helped bysurgery, but the reportedly high cure rates are often inflated. Many women who have thesurgery feel better for a while, but in a year or two the pain often comes back--and ifthe doctors don't keep track of their patients' well-being long-term, these women areincluded in their "cure" rates. My advice is to be wary of the "if ithurts, cut it off" theory, which strikes me as incredibly primitive--and somethingthat no doctor would be likely to suggest to a male patient! Try non-invasive therapiesfirst, and only go for surgery as a last resort.
CommentFor the past two and a half years, I have been having intense itching, inflammation,redness and pain. This problem began nine months after I had my son. I had gained a lot ofweight when I was pregnant so I strictly dieted after that to lose the weight. I barelyate anything in an attempt to lose the weight. I began having a heavy discharge withintense itching and inflammation. I went to the doctor and began treatment for yeastinfections and bacterial infections for one and a half years. Nothing helped. I have beento four different doctors all together and none of them have any idea what is wrong withme or what is causing this problem. All tests have been negative and all of the treatmentshave not helped. I think they just made the condition worse. Like everyone else I havetried everything that I could think of to get rid of this problem. Avoiding certain foods,no soaps, no detergents, etc. Nothing has helped me at all although not using any soapgives me a little relief. About three weeks ago I found a vitamin book I had and I lookedup vaginal itching. In that book it indicated that vaginal itching could be caused by adeficiency in vitamin B-2 (Riboflavin). I figured it couldn't hurt so I bought a B Complexas well as B-2 caps. I have been taking both of them three times a day now. It has beenapproximately three weeks and I cannot believe the difference. The itching, inflammationand redness are drastically improved. I have not consulted my doctor regarding thesupplements and I have been taking them three times a day and the recommended dosage isonly once a day but I was desperate. However, after taking the B vitamins I feel about 90%better. I am going to continue taking the supplements and I hope that it cures the problemcompletely. I am going to talk to my doctor about the dosage but the book said that therewas not really a toxicity problem with taking Vitamin B because the body does not store itbut everyone should probably check with their doctor before trying it. I am not positivethat this was my problem but after two and a half years with this problem, this has beenthe only thing that has helped me. I have also been taking a supplement called Damianawhich is supposed to bring oxygen to the genital area. Perhaps a B vitamin deficiencycould be causing this problem for others. I have found this guestbook to be very helpful -just knowing that others share this terrible problem made me feel better so I wanted toshare this discovery. I hope it helps.
CommentI was put on Cipro for 6 days for a uti, then thought that I had a yeast infection. Itreated myself with over the counter meds for 5 days as directed. I went back for a urinecheck and it was clear. However, the pain, burning in and around my vagina was really bad.The creams made it much worse. I then went to my gyn who said that the antibiotics hadpassed through the urine and had caused all the pain. Now 3 weeks has passed and I do notthink this is the case. I beleive that I may have vulvodynia. I would like to know ifanyone out there has had a smilar experience with antibiotics or yeast infection creams?The pain gets worse at the end of the day, and I am not sure where to turn now. The gyntested me for all sorts of things, I do not have herpes, yeast, or an std. Any help outthere. Thank you again
CommentThanks Dr Glazer for this opportunity to make contact with other women. I live in PerthWestern Australia the most isolated capital city in the world and I read this website Ifelt absolutely isolated. I'm 56 two children 1971 and 1974, laproscopic sterilisation in1976. I remarried in 1978 and up until November 1997 had an extremely active andfulfilling sex life. Early 1997 I began using Yam cream to up my Estrogen levels but noreal difference after 11 months. In November 1997 Pap smear was positive and underwentlaser treatment by Gyno on cervix. Tried to resume sex in February/March 1998 but veryuncomfortable. Felt that one small area just inside of vagina was very sore butperservered. By August 1998 visited Gyno but nothing obvious on vaginal wall and certainlyno discolouration. Pain worsened and raw feeling within vaginal area. Feeling veryfrustrated I visited a sexuality clinic to see if they had any answers. Doctor said I wasso raw vaginally she would not use a speculum but rather examined me found I was bleedingfrom vaginal walls thought it could be hormone related and referred me back to my Gyno. Isaw him in February 1999 and he said I was lacking Estrogen needed HRT and was beingfurther irritated by a odourless milky copious discharge. By this time my ESR blood levelthat had been around 50 (way over accepted levels) had now reached 70. Prescribed Flagyl(first of three courses in 10 weeks) discharge returned within days of finishing eachcourse. Began taking HRT in March had bad reaction (many of the women I know swear by HRTbut for me it was a problem). I had headaches, fluid retention, mood swings, swollenengorged breasts, and began bleeding ten days after commencing HRT I then discontinued HRTafter 15 days but continued bleeding and clotting for 28 days. I had elevated bloodpressure circa 125/195 which continued for for some months. By this time my whole vulvawas red, raw, sore stinging and itchy. More Flagyl for discharge but did not help. ByApril/May 1999 I had urine which was brown cloudy and foaming (Irish Doctor said it lookedmore like a beer or Stout). I was then and am still now drinking around 10 pints (5litres) of water every day. Yet the dark coloured and very irritating urine continued.This caused even further irritation with the vulva area. I now have 90 ESR levels, bloodpressure improved now 90/175, but a out of control coloured constant odourless dischargeand far worse problems with labia, clitoris, vagina and perineum. I have recently visitedanother Gyno who was recommended to me by my fantastic new General Practitioner. The maleGyno is sensitive and choase not to use the speculum as he could see the problem in theVulva area and the redness and swelling around the vagina. He prescribed pessaries OvestinOvula (usually given to lactating mothers as it only works in the vaginal/vulva area and Iam told is not systemic). I have persisted with the Ovula but within minutes of insertingI experience a burning sensation and that continues for an hour or so. My ESR levels arestill 90, the vulva is an absolute mess and so am I. I like many of the other women I readabout in these guestbooks have reached the end of my tether. I did say that I would trialthe Ovula for a month and the Gyno has suggested that I be referred to a Vulva Specialist(who I believe worked for some time in a dedicated vulva clinic in another state ofAustralia). As I write this today my urine is still a problem although not so dark butcertainly very irritating and I have just learned that I have a couple of"harmless" cysts on my left kidney - now is what has been causing my kidneypain. To cope with the urine irritation I too like many of the other women use warm waterto wash my vulva thoroughly after urinating. My whole vulva is raw sore stinging and Ihave a horrific itch which is a little relieved when I pour over the warn water. SometimesI get up during the night a do this once or twice. The main area where I feel I have cutsis around the clitoris area but this is extremely itchy and also sore. Where to from hereI really don't know as I have lived a celibate life for two years which of course is verydifficult for both of us - I and my husband really would like some answers. I was sent acopy of the letter from the Gyno to my doctor and it began with "Densie has a complexyet uncommon problem which I would hope may be resolved but it certainly at this pointcertainly does not look too promising". I suppose I should be pleased that this Gynohas given the name of a couple of specialists in the vulva diseases/gyno area to myDoctor. Love to hear from other women who have experienced a similar story as we can learnso much from each other and break the feeling of isolation.
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CommentTo Katherine- Believe me I have had all the tests, and surgeories I am ever going tohave. What my chiropractor is doing is very uncomfortable, not to mention embarassing, buthe actually goes into the rectum, and pushed the nerve away from the area, which he saysis very swollen and irritated, once he does that he tries to manipulate the tailbone intoit's original position. I go once a week. Immediately after the appointment I feel totalrelief, if I miss a week I feel it in my abdomen, and the burning is worse. Because thetailbone has been in this possition for so long it is going to take awhile to undo thedamage. All of the surgeory I had done before was exploritory, except for thehystorectomy, which I'm glad I has done because they found three seperate things wrongwith the uterus. Not to mention I certainly don't miss mt period at all. I still have myovaries, so I have no estrogen problems. I am very hopeful that this burning pain will goaway after my tailbone is fixed, (without surgeory). If anyone else has had there tailboneor spine worked on please, I would really like to talk to you.
CommentHello again, I would like to hear from ladies who tried biofeedback but had severeburnigs and soreness! ALL THE BEST TO EVERYONE!!!
CommentGreat to see education on this subject! I've been sufferring for 15 years, sincegradeschool and am desparate for a cure. Just had my first baby 7 months ago, gotten worsesince then. I am currently a patient of Dr. Haefner at U of Michigan Center for Vulvardiseases. Waiting until I'm done breastfeeding my son to try treatment. Wish me luck!Found your website very informative and interesting. Keep up the good work and getting theword out about this condition. I took the survey, hope it's helpful. God Bless.
CommentThis message is for Kim at shefkim7@naspa.net. I saw your message and look forward to hearing from you!
CommentThis is actually my first time on the web looking for sites regarding vulvodynia. I'm25 and have been suffering for 15 years... Just had my first baby. I have a hunch that I have nerve damage or mixed signals of some sort from an accidentin gradeschool. Since the accident the pain (really, mostly itching and burning) has beenregular, almost constant, and at times unbearable. After many doctors and everything from"It's all in your head" to yeast infection treatment after yeast infectiontreatment" I found a wonderful ob/gyn who took me seriously and referred me toUniversity of Michigan's center for vulvar diseases. My first appointment there was when Iwas pregnant with my son, now 7 months old. I'm trying the usual, no softeners, no soaps,eliminating irritants, until I'm done breastfeeding. Then we'll haul out the drugs. Fromthe sounds of it, I'm apparently in line for a long, frustrating journey throughtreatments. But, at least someone's taking me seriously now! In my early teens, I started using over counter local anesthetic creams -- vaginex,vagisil. I've stopped those and am on a prescription now. Doesn't work nearly as well, butDoc doesn't want me to use vagisil anymore, says prolonged use can make it worse. I hope there's a breakthrough for all of us soon. This is nothing short of "lifealtering". When I was surfing the web today, I found an interesting site..candela.com which makes claims that they have a laser that can treat vulvodynia. Is anyonefamiliar with this? Quite frankly, I would rather be numbed for the rest of my life and never feel sexagain than live with this. Do you feel the same? If anyone is familiar or has heard anything about this laser procedure, could youe'mail me? If you need someone to vent your frustrations to, feel free, I'll listen tothat too. I'm praying for all of you. I know it's agonizing, and pray for a cure for all of us.
CommentThis is for Becky. I have not had time to check the website you recommended about newlaser treatment for vulvodynia, but I thought I would tell you that I had laser treatmentlast year in April to the whole vulval area. It was very painful until the skin healed,but the vulvodynia pain stayed away for about 6-7 months, so I was obviously happy.However, it then returned, and I have now been told that the reason the pain went away wasbecause the nerve endings had been destroyed by the laser, but nerve endingsgrow/regnerate again over time, so that's why the pain relief is only temporary. It makessense I guess. I am now trying other treatments, e.g. low oxalate diet, Vitamin E oil,etc. I also don't use soap, only wear 100% cotton underwear, wash my underwear in boilingwater only, dry with a cool hairdryer after showering, etc. Perhaps you could discuss thelaser option with a few more people before you decide on that treatment. I don't knowwhether it's worth it if you think about the above explanation about nerve endings. Goodluck anyway.
CommentI just have to say that it is quite a relief to finally realize that I am not the onlyone out there suffering from this horrible and debilitateing condition. I have beendiagnosed with Vestibulitus for almost a year now. I was prescribed steroid creme andanti-depressants and was pain free for months. About 2 months ago the pain and burningcame back after working out at the gym the day before. Has anyone else had symptoms afterphysical activity like this. I have been on steroid creams, Estrogen creams, Anti fungalcreams, and Xylocaine. Nothing has worked. Some of them worked for a couple days but thenthe pain comes right back. I live in Michigan and am currently looking for a goodspecialist. Does anyone know of a good specialist to see for this around this area? I amgetting desperate. I cry all of the time and am depressed. Sometimes I look around at socalled "Normal" people and wonder why me? Why us? This is a horrible thing to gothrough and I wouldn't wish it on anyone. My fiance has been wonderfully supportive butsometimes I wonder if it is fair to him. If anyone knows of any support groups out there,I would love to know about them. Feel free to email me anytime. Thank you so much forlistening. I am praying for you all.
CommentHeather -- the Vulvar Pain Foundation (vulvarpainfoundation.org) organizes supportgroups around the country. They are run by member volunteers. You may need to join theorganization to put in touch with a support group leader, but it's worth the reasonablemembership fee. Also, if you might consider seeing a counselor experienced in dealing with theemotional issues of chronic pain, if that's an affordable option for you. I too wasfeeling absolutely desperate and devastated by this condition. Then started on Celexa, ananti-depressant that works well for me, and seeing a very caring therapist who deals withchronic pain. She has helped me develop several emotional tactics that seem to keep thedesperation in check -- and help me get closer to living a normal life, despite theconstant pain. I'm beginning to believe that the emotional aspects of this condition are really moredebilitating that the physical pain and keeping a positive outlook on it is the toughestpart of dealing with it.
CommentI've just found this site and have been reading through the last couple of books. Iwaver between being encouraged and feeling hopeless. I'm 24 years old, have hadvestibulitis for a year and a half, and am single. Its not that I don't get asked, I justdon't know how to date with this condition. Its one thing to want to wait till the righttime in a relationship for sex, its quite another to say that that time will never come.One guy's response was to ask whether he was in danger of "catching" anything. Ican't express how dirty and undesirable that made me feel! Does anyone have any suggestions? How do you bring it up? What do you say? I almostfeel like a walking lie. By flirting, I'm sending off the signal that I'm available, butonly I know that there are limits to my availability. I'm trying very hard not to let thesymptoms and aparent incurability of this condition get me down, but as I try each"cure" with no success, it gets harder and harder to stay hopeful. One of mybiggest wishes for life is to have a husband and children, but that just doesn't seem likeit will be possible...Somebody please convince me that it is!
CommentRachel If you figure out how to date with vulvodynia please share with the rest of us.I have been dating the same person since before my vulvodynia started but now ourrelationship is coming to an end. Now I face the challenge of finding someone to date whounderstands that its possible I'll never be able to have sex with them because its justtoo painful.
CommentWHAT IS THIS ABOUT
CommentDear Rachel and C and everyone else, No. 15, the Summer/Fall 1998 issue of the VulvarPain Foundation's newletter has a cover article titled Sexual Issues and Vulvar Pain. ThoI'm married (over 20 yrs) and have a great husband, we've had no sex since my vulvodyniabegan a few years ago. Too painful. And despite my husband's unconditional love, I worrylike you. If I ever lose him, who will want me? I feel like damaged goods, as lucky as Iam in my relationship. There's no easy answer, but I found this article a rare, succinctcommentary on the emotional/sexual aspects of vulvodynia that are all too often overlookedby the doctors who treat us. Best of luck to you all.
CommentHow amazing to read the guestbooks and find people who can relate to me!! I have hadburning and stinging pain for almost 2-3 yrs. now and was just diagnosed a few weeks agowith vestibulitis (after being misdiagnosed god knows how many times.) Before I saw mylast doctor, I had done tons of research on my own because I was sick of thinking andbeing told "it was all in your head" and thought I had some type of vulvodynia.i didn't tell the doc this though and he diagnosed me within 10 minutes or so of examiningand talking to me...I almost didn't believe him because he knew so quickly. The options he presented to me were to start with a combo steroid/yeast cream...I'vebeen on tons of creams before); alcohol injections; steroid injections; and surgery. hedidn't mention antidepressents although he did briefly mention the low3 oxalate diet. Ifanyone has some input, please e-mail me.. Thank you and god bless.
CommentI can't tell you all how elated I was when I visited Dr. Elizabeth Stewart's clinic inthe Boston area and she finally gave me the diagnosis--vestibular vulvodynia. I'd gonethrough dozens of creams, a minor surgical procedure to excise a small bit of skin from myperennium, not to mention years of humiliation by gynecologists who told me I was"difficult" for saying I had pain at exams, not to mention hallucinating aboutthe ongoing burning and itching itself. It was so validating to have a doctor nod her headand say yes, I see an average of six new patients just like you every week. I'm not surehow long I've had this problem, it's at least 5 years, I'm 25 now. I just got married inOctober to a man who's been with me 7 years. Thank God for him. To the woman who said shefelt getting married wasn't worth it given this problem, I have to say that a relationshipcan be satisfying in so many ways, and sex is not the only one. But that said, I DO wantto have sex with my husband, and have never comfortably done so! I'm on Desepramine, atricyclic anti-depressant, and Estrace cream, which seems to be helping. I'm also seeing a physical therapist. The burning had disappeared since I started themeds, but since I've started doing biofeedback it's initially come back and isuncomfortable. Is that normal at the beginning of PT but may go away again later? Another question for anyone and everyone--I feel like before, I tried every possiblemethod and nothing worked except the surgical procedure, which was really like removing amilimeter of a 3-inch problem. So now I feel like let's skip all this medical stuff andjust do the surgery (vestibulectomy) and get it over with. Someone shed some light please? This service is wonderful--a great resource. I'm grateful for it.
CommentTHIS IS WHAT WORKED FOR ME. I HAD SURGERY TO REMOVE THE CHRONICALLY INFLAMED VESTIBULARGLANDS. AFTER 6 WEEKS OF HEALING I BEGAN WORKING WITH VAGINAL DILATORS TO LEARN TO RELAXTHE MUSCLES AROUND THE OPENING OF THE VAGINA. THINK OF HOW YOU FLINCH IF SOMEONE IS GOINGTO PUNCH YOUR SHOULDER. NOW THINK OF STAYING LIKE THIS CONSTANTLY FOR YEARS. THE PAIN FORME WAS TWOFOLD. FIRST THE INFLAMMED VESTIBULAR GLANDS THEN THE CRONICALLY TIGHTENEDMUSCLES. AFTER THE SURGERY ALL MY DAILY BURNING AND PAIN WERE GONE BUT PAINFULL SEXREMAINED. I HAD NOT READ ABOUT THE DILATORS ANYWHERE SO I HAD A HARD TIME COMMITING TOTHEM BUT ONCE I DID (30 MINUTES DAILY) I REALLY BEGAN TO IMPROVE AND AM NOW ENJOYING SEXWITH MY HUSBAND. I WOULD SAY I AM ABOUT 99% "NORMAL". I EAT WHAT I WANT AND AMNO LONGER TAKING ANY MEDS. I BELIEVE MINE WAS RELATED TO SOAP. I USE IVORY AND THAT SEEMSTO WORK FOR ME. I ALSO STICK WITH WHITE COTTON UNDIES WASHED IN WOOLITE AND RINSED TWICE.IF YOU ARE IN THE CHICAGOLAND AREA PLEASE SEE DR LANE MERCER. 30 NORTH MICHIGAN AVE SUITE607. PHONE 312 726 3917. HE DIAGNOSED ME SITTING IN HIS OFFICE FOR THE FIRST TIME BEFOREHE EVEN EXAMINED ME. HOPE THIS HELPS. DONT GIVE UP. THERE IS HELP OUT THERE.
CommentHI AGAIN EVERYONE I JUST EMAILED OPRAH AND ASKED HER TO READ THIS GUESTBOOK AND SEETHAT SO MANY WOMEN (AND THEIR SIGNIFICANT OTHERS) ARE SUFFERING, MOSTLY DUE TO LACK OFPROPER MEDICAL CARE AND TREATMENT. IN THIS DAY AND AGE IT SHOULD NOT TAKE YEARS TO OBTAINA CORRECT DIAGNOSIS. I SAID THAT PERHAPS IF SHE DID A SHOW ON THE ISSUE MILLIONS OF WOMENCOULD BE REACHED AT ONCE AND MAYBE PHYSICIANS WOULD OPEN THIER EYES AND LEARN ABOUT THECONDITION AND ITS TREATMENT. WHY DONT ALL OF YOU EMAIL OPRAH TOO. THERE IS STRENGTH INNUMBERS. MASS MEDIA WOULD BE GOOD. THANKS
CommentHeather, that's a good idea. What is Oprah's email address?
CommentI wrote to Oprah last night, maybe if we all write they will air something on thisproblem. No cause No cure. I hate those words. It can't be true, I refuse to buy that. It may be that no cure will be found, but just imagine a world where all doctors werefamilar with this disease and we wouldn't have to go to 15 doctors before we find someonethat listens to us. Just imagine having a pap smear and it didn't hurt or the doctor didn't say this is allin your head, hold still or it will hurt more. How is it that we women can be treatedworse then animals sometimes? Shocking and difficult for me to understand why some doctorsstill insist on cutting our vaginas apart to save us from pain. This pain is not just skindeep, so why treat us so barbaric. It is horrible to think that some women indure thatkind of insult and pain to their person. See 20 doctors but don't let them cut you! When the nerves grow back and they will, thepain will be worse or just the same. Anyway everyone write to Oprah maybe we will get heard. Lyn j
CommentHi everyone...My heart aches for all of you. I have been suffering with vulvodynia foralmost 12 years now. It started as a newlywed and I originally thought it was because Ihad been a virgin up to my wedding night. Not so. The pain has persisited through manytreatments and therapies. I have taken anything and everything from steroids, to bacterialcreams (even though I have never been diagnosed with so much as a bladder or yeastinfection ever), anti-depressants, anti-convulsants...you name it. The list goes on andon. I finally ended up with life-threatening ovarian cancer, which I am almost certain wasbrought on by all of the invasive treatments and drugs (topical and internal) prescribedto me by many doctors who literally smirked at me and told me to quit dwelling on my sorevagina and get a life. I wish I could! Anyway, I had to have a complete hysterectomy dueto the cancer and was in the hospital for 7 days. I never wanted to leave that hospitalbed as I was on morphine and it was the first time in years I had ever been free of pain.Once out of the hospital, the pain returned with a vengeance and was made worse by thefact that I no longer had any natural hormones. Premarin doesn't help at all. After muchtreatment my doctor says I am cancer free and one of the "lucky" ones. I knowthis sounds awful, but I was hoping the cancer would take my life and I would at last beat peace from this hell. I can't eat or sleep and I cry all the time. I literally NEVERsmile and find myself thinking suicidal thoughts often. I have a wonderful, supportivehusband but I feel guilty about ruining his life everyday, which only makes the illnessworse. I can't sit or stand. Lying down hurts. I am literally a prisoner in my own bodyand can't escape the pain. I live in Canada and although our health plan is very goodhere, the knowledge and treatment of this condition is pitiful. I have even had a doctortell me that he could see nothing wrong with me and when I begged him to be gentle in hisphysical exam, he rammed the speculum in me as hard as he could just to prove a point. Toall of you who are taking all of the topical medications, steroids, anit-depressants andgetting the surgeries...STOP! Your own body has the ability to heal you more than thedoctors do. I am not trying to discourage anyone, but the fact is that these aretreatments that I have been trying since 11 and 1/2 years ago and they are not new, andthey obviously have not cured anybody. We need some real research and we need a true cure.As long as we all blindly listen to doctors who just want to make us and our problem goaway by prescribing the same old ancient rememdies, this condition will never be cured. Ihave even considered low dose morphine or severing the nerves to the area all together.Has anyone ever heard of this or is it just something I'm making up in my head? Well, atleast I'm trying to think of new options (unlike many of the so-called medicalexperts).This is a serious situation. Will no one help us?
CommentHi everyone...My heart aches for all of you. I have been suffering with vulvodynia foralmost 12 years now. It started as a newlywed and I originally thought it was because Ihad been a virgin up to my wedding night. Not so. The pain has persisited through manytreatments and therapies. I have taken anything and everything from steroids, to bacterialcreams (even though I have never been diagnosed with so much as a bladder or yeastinfection ever), anti-depressants, anti-convulsants...you name it. The list goes on andon. I finally ended up with life-threatening ovarian cancer, which I am almost certain wasbrought on by all of the invasive treatments and drugs (topical and internal) prescribedto me by many doctors who literally smirked at me and told me to quit dwelling on my sorevagina and get a life. I wish I could! Anyway, I had to have a complete hysterectomy dueto the cancer and was in the hospital for 7 days. I never wanted to leave that hospitalbed as I was on morphine and it was the first time in years I had ever been free of pain.Once out of the hospital, the pain returned with a vengeance and was made worse by thefact that I no longer had any natural hormones. Premarin doesn't help at all. After muchtreatment my doctor says I am cancer free and one of the "lucky" ones. I knowthis sounds awful, but I was hoping the cancer would take my life and I would at last beat peace from this hell. I can't eat or sleep and I cry all the time. I literally NEVERsmile and find myself thinking suicidal thoughts often. I have a wonderful, supportivehusband but I feel guilty about ruining his life everyday, which only makes the illnessworse. I can't sit or stand. Lying down hurts. I am literally a prisoner in my own bodyand can't escape the pain. I live in Canada and although our health plan is very goodhere, the knowledge and treatment of this condition is pitiful. I have even had a doctortell me that he could see nothing wrong with me and when I begged him to be gentle in hisphysical exam, he rammed the speculum in me as hard as he could just to prove a point. Toall of you who are taking all of the topical medications, steroids, anit-depressants andgetting the surgeries...STOP! Your own body has the ability to heal you more than thedoctors do. I am not trying to discourage anyone, but the fact is that these aretreatments that I have been trying since 11 and 1/2 years ago and they are not new, andthey obviously have not cured anybody. We need some real research and we need a true cure.As long as we all blindly listen to doctors who just want to make us and our problem goaway by prescribing the same old ancient rememdies, this condition will never be cured. Ihave even considered low dose morphine or severing the nerves to the area all together.Has anyone ever heard of this or is it just something I'm making up in my head? Well, atleast I'm trying to think of new options (unlike many of the so-called medicalexperts).This is a serious situation. Will no one help us?
CommentIt's me again. I started elavil for about a week now at bedtime. I am responding to itvery well, Thankfully, but for how long I'm not sure. Right now I'm just enjoying being"pain-free" at the moment. Hang in there guys. I spoke to my urologists thispast week and he said that there are alot more studies going on that the awareness forthis condition is being recognized and medications are being studied to remedy the pain.If I find out more I'll write back.
CommentKIM- I TOO THINK ABOUT SUICIDE AT TIMES EVEN THOUGH MY PAIN IS GETTING BETTER, WHEN ILOOK OVER MY LIFE FOR THE PAST 15 YEARS OR SO, AND THE PHYSICAL, MENTAL, AND EMOTIONALPAIN THIS CONDITION HAS CAUSED ME, IT'S JUST MORE THAN I CAN HANDLE AT TIMES. BECAUSE ASMOST OF US WITH THIS CONDITION KNOW THE DOCTORS ALL TOLD ME THIS PAIN WAS IN MY HEAD,THERE WAS NOTHING PHYSICALLY WRONG WITH ME, I BEGAN TO BELIEVE WHAT THEY WERE SAYING.INTERCOURSE WAS PAINFUL BECAUSE I REALLY DIDN'T LOVE MY HUSBAND, OR I JUST DIDN'T LIKE THEACT OF SEX. THEY KEPT TESTING ME FOR STD'S EVEN THOUGH ALL THE TESTS CAME BACK NEGATIVE, IHAVE HAD EVERY TEST KNOWN TO MAN, AND AFTER SO MANY YEARS OF THIS MY HUSBAND BEGAN TO TAKEMY LACK OF ENTHUSIASIM FOR SEX PERSONALLY. I WAS SO CONFUSED BECAUSE I LOVED MY HUSBANDVERY MUCH AND REMEMBERED HOW MUCH I USED TO ENJOY SEX WITH HIM, AND I HAD NO SOLID ANSWERSFOR THE WAY I FELT PHYSICALLY. WHEN I FINALLY FOUND OUT ALMOST TWO YEARS AGO THAT THEREWAS A NAME FOR WHAT I HAD AND THAT THERE WERE MANY OTHERS OUT THERE GOING THROUGHT THESAME THING, IT WAS A GREAT RELIEF AND UNBELIEVABLY SCARY, BECAUSE THERE DIDN'T APPEAR TOBE A CURE. MY HUSBAND WAS VERY SUPPORTIVE AND TOLD ME WE WOULD WORK ON THIS TOGETHER, THATWE HAD BEEN TOGETHER TO LONG TO LET THIS COME BETWEEN US AND THAT HE LOVED ME.UNFORTUNATELY NONE OF THIS WAS TRUE. HE ONLY SUPPORTED ME FOR A COUPLE OF MONTHS BERFORE ILEARNED HE HAD FOUND SOMEONE WHO COULD HAVE SEX ANY TIME HE WANTED IT. I'M NOT TELLING YOUANY OF THIS TO SCARE YOU. I'M TALKING ABOUT THIS BECAUSE ALMOST TWO YEARS HAVE GONE BYSINCE MY LIFE FELL APART AND SOMETIMES I HAVE TO LET IT OUT. FAMILY AND FRIENS KNOW WEHAVING REAL TROUBLE AND CONSIDERING SPLITTING UP, BUT OFCOURSE NO ONE KNOWS THE REALREASONS WHY. WHAT I HAVE NEVER DONE UP UNTIL NOW WAS TO WORRY ABOUT MYSELF, I HAVE ALWAYSPUT EVERYONE IN MY LIFE BEFORE MYSELF, AND WHEN I ENDED UP STANDING ALONE AS I HAVE FORTHESE PAST TWO YEARS, IT WAS VERY VERY SCARY, BUT ALSO IT HAS MADE ME STRONGER. I NOW KNOWTHAT A RELATIONSHIP DOES NOT HAVE TO BE BASED ON WHAT YOU CAN GIVE TO SOMEONE ELSE, ITMEANS AN EQUAL AMOUNT OF GIVING AND TAKING, AND I SHOULD HAVE BEEN ABLE TO LEAN ON MYHUSBAND IN MY HOUR OF NEED, BUT I COULDN'T. I HAVE GROWN SO MUCH IN THE PAST TWO YEARS. IPLAN TO MOVE ONTO AN APARTMENT OF MY OWN, AND START TAKING CARE OF MYSELF, AND PART OFTHAT MEANS GETTING THE WORD OUT ABOUT THIS CONDITION. MY ADVICE TO YOU IS, TAKE ONE DAY ATA TIME, LET THOSE AROUND YOU WHO TRULY CARE ABOUT YOU KNOW ABOUT YOUR PAIN, EDUCATEYOURSELF AS MUCH AS YOU CAN ABOUT THIS, AND ESPECAILLY REALIZE THAT CAN BE A TEMPERARYSITUATION, BUT DEALTH IS FINAL. DON'T LET THE DARK DAYS PULL YOU IN, AND HOLD YOU DOWN. IAM SPEAKING FROM EXPERIENCE. I HAVE BEEN WHERE YOU ARE NOW, AND ONCE IN AWHILE I CLIMBBACK UP ON THE PITTY POT, BUT MY VISITS THERE ARE FEWER AND SHORTER THESE DAYS. AS SOON ASI GET A E-MAIL ADDRESS I WOULD LIKE TO CONTACT YOU, AND WE CAN GIVE SUPPORT TO EACH OTHER.
CommentI have both vaginitis and vulvadynia. Currently, my biggest problem is continualvaginal discharge and buring and itching. All genital cultures come back normal exceptthere is an overgrowth of the normal vaginal bacteria called lactobacilli. This conditionhas been called vaginal lactobacillosis or Doederlein cytolysis. My doctor recommendedthat I perform douches with baking soda. I was wondering has anyone of you been diagnosedwith this problem and what did you do to treat it. All comments and suggestions would beappreciated
Commenthi- i'm the one who left the long winded entry and left no name. i don't want anyone iknow to stumble onto this web sight and there is my name. i have tried to protect myfamily (children) from the damage that this has caused me. I just wanted everyone to knowthat along with being able to pass this condition onto our daughters our sons can inheritthis also. My doctor says it's called scrotumdynia! Can you only imagine trying to explainthis to your teenage son!
CommentHello everyone, I just wanted you all to know how to contact Oprah Winfrey to suggestshe does a show regarding Vulvodynia. I went to her website today and made a request. Justgo to www.oprah.com and find the link that says to suggest a show topic. I wish Iremembered the exact name of the link, but it's pretty self explanatory once you're on thesite. PLEASE E'MAIL HER THIS REQUEST!!!
Commentwoops, hit the wrong key, didn't mean to end my entry just yet. Anyways... there'sstrength in numbers, please e'mail oprah and tell her your story and how it has effectedyour life. Tell her about all the other women suffering, and mention this webpage and theguestbook. I think reading all these stories would help the producers see our point. Theway the medical profession treats women with this disease is barbaric. The word needs toget out. Those of you who have been suffering for years hearing "it's all in yourhead" and eventually wondering if you are crazy, how would things have been differentif shortly into your suffering you would have seen an Oprah episode with other women ondescribing your life? I went fourteen years before finding a specialist, 10 years untilsomeone took me seriously! Women are suffering silently out there thinking they're theonly one, just like every one of us did at one point. The word needs to get out! Oprah hassuch a heart for humanity, I know if she gets word of this and hears how women aresuffering, because of a lack of attention and understanding (I think that's the mainreason there isn't a cure or better treatment) she will step up to the plate for us. Themedia, mainstream media, needs to jump on this if we're going to get the attention wedeserve, the attention we need. Best of luck to all of you, I pray for you every night.
CommentMy vaginal problems have been a very discouraging factor in my married life. The besthelp I found was things i figured out on my own. GYN help has been unsatisfactoryand attimes I felt like I was not really taken seriously. I can see how women without any realemotional help could become quite deperate. When the pain associated with this vaginal isat it's worse and sometimes can last for months. I am effected when stress, hot weatherand schedule is to hectic {Christmas, Gardening Time}. November, December and January arealway difficult, also June and July because of added responsibilties.
CommentI am currently on 150 mg of desipramine and topical lidocaine, also working with a phystherapist, chiropractor, massage therapist, and exercising and doing yoga to try torecover from vulvar vestibulitis/vulvodynia. While my symptoms have quieted down and myquality of life has improved, I still have significant inflammation of the hymen and lowervestibule, and I still experience pain at times after urination and bowel movements, or atother times for no clear reason. I do feel that chiropractic adjustments are making a bigdifference in my entire body, and am hopeful for what the chiro. can do for the psoasmuscles. My feet, posture, pelvis, spine have all been off. I suspect a couple ofaccidents and playing the violin for many years may have contributed to asymmetries. I suspect that although it may not be the final answer, I will need a vestibulectomy toremove the hymen that tore in a bad way and has become too scarred after longterm pain.Also, I have had vulvodynia for two years but suffered sporadic urinary pain for at least5 years before that. If you have had a similar experience of needing the vestibulectomy orhave figured out how to cure the urinary pain, or if you can simply relate to somethinghere, PLEASE, PLEASE write in to the guestbook. Although I know that the urethra and thevestibule arise from the same tissue during embryonic development, and that pain in onearea affects the other area, I still feel that urethral or urinary pain is the source ofmy problems. I never had a problem with intercourse up until two years ago. Can anyonegive me any advice? Has anyone had the experience of the drugs not ultimately workingbecause of scarred tissue that keeps the pain going locally? Did the surgery cure you? Inmy case I have only been on the drug for 2+ months so it is perhaps still early to tell. Thank you. P.S. I don't feel comfortable putting my e-mail address here, but if you have a storythat can help and want to respond, please write in the guestbook and ask for it. Thanks.
CommentJust wanted to let everyone know that I too wrote Oprah today about our problem. Ithink it is a wonderful idea and will let you know if I hear anything. I also wanted tothank those of you who took time to write to me. Talking to others who are going throughor who have gone through this helps tremendously. To those who have thought about suicide,I can't say that I haven't had those thoughts either. There are days that I feel like Ijust can't live with this anymore, but we will get through this. Lean on others aroundyou. You may feel alone but your not. I for one will pray for all of you. If we all workin this together, we are that much closer to a cure. Believe me, I'm not always thisoptimistic. Naturally I'm a pesemist and always look at the down side but you happened tocatch me on a good day. The pain is minimal. I take advantage of every low pain minute butI know it won't last long, so this optimistic feeling won't last too long, but while itdoes I want everyone to know that if you need to talk you can email me. I hope you havemany painfree days.
CommentI have been suffering with vestibulities for 3 years now, with good and bad times. Myboyfriend has been wonderful for the 4 years we have been together, however my sex drivehas nearly disapeared. I would be quite happy never to have sex again, however I don'tthink my boyfriend would. My doctor has run out of suggestions for me to try, butsuggested I get some psychosexual counselling, as I have no desire for anything sexual asI guess I am petrified it will hurt. I have finally plucked up the courage to make anappointment for next monday and I was wondering if anyone else has had any counselling ofthis sort and does it help. The whole situation is really bring me and my boyfriend down,I'm scared it will split us up. I haven't included my e-mail address as I have only juststarted on the net and I'm not 100% sure on how to work it! Please reply in the guestbook. Thanks a lot my prayers are with you all, that one day we will beat it.
CommentHi all you fellow sufferers. I have been dealing with the horrible pain of vulvodynianow for almost 2 long years. I too went to several doctors before being diagnosed. I nowtake Oxycontin, a wonderful pain reliever that you take 2 times a day, 12 hours apart. Forthe first time, I can think about other things than the pain. Although the pain doesn'tcompletely go away for the full 12 hours, I get a good 6-8 hours of complete pain relief,without drowiness or other side effects. I suggest to anyone out there to get you doctorto prescribe it. After all there is no cure and nothing else seems to completely relievethe pain. I feel "normal" again. It is 6-8 hours at a time of complete bliss andfreedom!!!
CommentTo all out there with this pain. I am so sorry And I know how you all feel. I am 21years old. And have been suffering with this not even a month after I turned 20. I wasjust diagnosed a few days ago. The dr. told me it was all in my had. She called me thenext day to tell me to come in. She was the only dr. over 1 1/2 years that told me it wasin my had. I ended up going in. I am now on a generic from of tricylic antidepressant. Ithas only been three days. I do not like the medicine because I feel tired. I am lookingfor some homeopathic remedies. Does anyone know of anything?
CommentI think trying to draw media attention vulvodynia is a really good thing. To emailoprah: To get to the suggest show topic, go to www.oprah.com click at the bottom right onemail oprah. Then click on Show Suggestions. Next just enter your suggestion. The mediamay be suffers best help of trying to get a cure.
Commenthello, I've had vulvodynia for over 4 years. I've been through all the usual horribledoctors and treatments and tesing and depression. I even had surgery that despite Dr.Kresch's credibility did not work (we lost this poor doctor to cancer just recently, hedid a lot for women like us). After his death I started seeing this doctor's colleage atthe same center who started giving me PUDENDAL NERVE BLOCKS. The first one worked!!!!!!!The second one worked!!!!!!!! Each time the pain stays away longer. After the third one, Ishould never need them again!!!!!!!! Not all my pain is gone, but I'm able to have sexwith my husband again. I suspect the rest of my pain can be taken care of with somethingeasy like biofeedback or something. I'm in northern California if anyone would likeinformation on my doctor just send me mail!!!Good luck!!!!
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CommentHello all, I first wrote here on 2/5. I keep learning more and more about this"stuff". I just want to say thank you all for being out there. It really doeshelp to know someone really understands me. My doc also mentioned the PUDENDAL NERVEBLOCKS and I have been considering them. Now I am on 30mg of amitriptyline ( I just movedup from 10mg) and have taken for a few weeks. My "good" days seem longer now.It's terrible, but I define good days by how long I can sit down! We have to fly toSanAntonio tomorrow, and I dread the thought of sitting in that darn plane! I hate goinganyplace too far from home. I keep up the fight, and I won't give up! TO SARAH! If youthink therapy will help go for it, but just keep in mind, there are a lot of women outthere like you and it hasn't got a thing to do with sex! Good luck! Take Care and thanksfor listening.
CommentI am the mother of a fourteen-year-old daughter who has recently been diagnosed withvulvodynia. She started having pain about four months ago. She and I would like to hearfrom any other teen suffering from this condition.
CommentI don't know if I have vulvodynia but after reading the simptons I wonder. SinceDecember I've been having a burning sensation in my clytoris I went to an urologist and Iwas diagnose with a urine infection; I was under antibiotics for a month during thisperiod the burning went to all my vulvar area and also having a high sensibility in mythights. Has been a nightmare,every time that I go to my gynecologist he saysthere is ayeast infection and all the test come out negative. During this time I've seen at least 5different doctors; and none of them can tell me what is wrong my life has change I can'tuse thigh pants or underwear and going out it's already a burden. The only thing that Ihave found that help me is keeping the vulvar area dry and also I wash myself with filterwater and boric acid (no soap). However I would like some advice in what should be my nextstep.
CommentI to have suffered from vulvodynia I now take one tablet of folic acid daily and it hasreduced the pain a great deal,I have also been diagnoised with dysplasia which is why Itake folic acid on a daily basis.thanks
CommentSARAH - I was officially diagnosed 6 yrs ago (I am now 28) and was given unsatisfactorymedication that I put up with until a few months ago. I finally went to my doctor indesperation because my marriage was in trouble - I was too scared of the pain to have sex.He told me it was all in my head and suggested psychosexual counselling. It helped me justto be able to talk about sex with someone who didn't criticise me for the way I felt. Shetold me my problem was medical and my doctor was shirking his responsibility by passing meover. I am now starting treatments that I could have tried years ago. So psychosexualcounselling did help me in way. I hope your counsellor knows about this condition and willrecognise that this is NOT a mental problem. Who would want to have sex knowing it isgoing to hurt like hell during and for a week afterwards? Thankyou to everyone out there who is trying to shed light on this - it is important tous all to have support. A personal thanks to Pam for the information (hope you are ok!)and Nicki (I'll write back when I am comfortable enough to sit at the computer for anhour!). Nique xxx
CommentI just wanted to share something that I noticed a few days ago. If I apply astroglide(which is meant to be a lubricant) to the vulvar area, it tends to soothe the pain alittle. I don't know why. Maybe it reduces friction when I walk or maybe it is all in myhead. All I know is that it is helping me and I wanted to share that. If it helps anyoneelse out there just a little, that is what matters.
Commenthello all vuvlodynia sufferers. I relate so much with all of you. I am 34 and have hadthis disorder since about 28. I have always been sensitive in the genital area, but neverto this extent. I am very prone to yeast infections and bladder infections. I have to walkon eggshells: 100% white cotton underwear, charmin aloe toilet paper, dye free detergentand rinse twice any garment that touches genital parts, special soap, 100% cotton pads andtampons... I seem to be acid sensitive. I break out on my chin from too much citric acidor other acid. I am extremely diet sensitive. If I eat spinach, parsley, coffee, red wine,beans, tomatoes, etc., I can experience burning and itching within a couple hours later. Idefinitely think the low oxalate diet helps me, but one cannot always follow that due tovarious situations. I experience burning, stinging, occassional redness, rawness,parchedness, irritation around entire labia. I absolutely cannot put soap (no matter whatbrand) on my vulva. I have been to thousands of doctors. I have helped myself more thanthey have. They are not very familiar with vulvodynia and don't really think it exists. Ihave tried every cream from steroid to fungal to cortazone. The estrace is soothing, but Ihave never used it on a continuous basis. If anyone has please email me with results. I amseriously thinking of doing Dr. Solomon's oxalate urine testing because I am so dietsensitive. Anyone please respond with your thougts on this...PLEASE!!!! I could try andtake citrical (2 caplets 3x day), but I would feel more comfortable with someoneoverseeing me. I have had a biopsy which showed severe inflammation, but no doctor knowswhy. I have had every test possible with everything negative. Sex is painful. I experienceburing upon entry and afterwards. I will take any tips or info. Should I consider Elavilor biofeedback? Does biofeedback help redness. burning and itching? Everytime I exercise Iexperience the dry parched irritation feeling. I go right to the shower after exercise.Tips? Does anyone know a wine that can be consumed without irritation-white, red or rose?I am new in San Francisco CA and I need the name of a doctor specializing invulvodynia.Please let me hear from anyone. I am so appreciative. Take care.
CommentHello everyone. I just ran into this web site by accident and thought I would takeadvantage of it to tell my success story with vulvodynia. I had stabbing pains in myvulva, felt like there was glass in my clitoris, and was unable to have intercoursewithout a lot of pain. I also was bothered by frequent yeast infections, but mostly it wasthe pain. I went to about 4 doctors and was told to get therapy and that there was nothingwrong with me. Finally I found Dr. Jerome Weiss in San Francisco. He told me about triggerpoints that can form in the muscle tissue from postural problems and stress. They measuredmy pelvic tension with a biofeedback machine and my pelvic floor was always tense with norelaxation. Through a combination of biofeedback, physical therapy for posture and pelvicrelaxation, and actual hands-on massage of the pressure points, acupuncture in my pelvicregion, I was 100% cured! I also have to take valium occasionally at night when I have tourinate a lot because I have bladder spasms sometimes (strictly stress related). With theright treatment there is hope.
CommentI cried when I looked over this website. For the past 9 years,since I was 12 years oldI have been suffereing from Vulvadynia. Iwas too embarrassed to seek treatment untill Iturned 18 and finaly was so fed up that I asked my mom to help me find a doctor. Afterseeing about 5 doctors and having no luck, I gave up all hope that this could ever befixed. Finaly, A Nurse practitioner (God BLESS her) suggested to me (while I was in for acompletely different reason) that I look up Vulvadynia on the web. That led me here. Forthe frist time in years I have hope that this can be fixed and that I won't have to livewith this awful pain anymore!
CommentBizarre stuff, this Vestibulitis. Noticed it my sophomore year in high school when myboyfriend's first attempt at manual stimulation was too painful to continue or everrepeat. (never liked the idea of masturbation - what fun is it when there's nobody thereto share it with you? - so I wouldn't know if it started earlier). Since then it's gottenworse, some days being better than others. Thankfully, it's still not too bad. Burningwhen wearing tight pants (although not thongs, oddly enough) or sitting for long periodsof time, and a wierd kind of pain that I have never quite found an adjective for whenattempting to tolerate a tampon, attempted sexual activity of any kind (talk about yourabsolute killjoy), and sometimes for no reason at all. Pain is localized, with two minorspots at the top of the opening and one "oh my god don't touch me" spot at thebase. Within the past few years, bowel movements have become frequently painful. It's alsoeasy to be overstimulated even without attempting penitration (mmm rapidly deteriorates toouch!, much to my would be paramours' chagrins). I'm 20 now, in my sophomore year ofcollege, and was diagnosed this past summer when I went for a routine GYN exam (the mostincredibly painful event of my young life - and I partially tore a ligament in my footonce!). I've never had bladder infections, yeast infections, pregnancies, STDs, abuse, orany other possible cause I've ever heard of, which is mighty confusing. I've triedamitryptaline (on incorrect dosing instructions, so we'll see how the correction I justrecieved from my GYN goes) with no success, and I've begun using Estrase cream so far withno luck. I tried lydocaine on some of my worse days (glorified oragel is supposed to fixthis? I think not...) but got no relief, only some tingling to go with the pain. I've beentold my vaginal opening is unusually small, but "nothing a little sex wouldn'tstretch out" (provided, of course I could actually have the sex she spoke of).Anybody with info on specialists in the Boston or New Orleans areas (home is NH, school isTulane - roll Wave roll!), please let me know if you've found a good one or anyone Ishouldn't touch with the longest pole I can find. Also, anyone with advice on how to dealwith this while dating, info please, because it's hard to meet guys when you know thatkissing and groping is the most pleasure he'll ever be able to give you (welcome back toenforced junior high!). Any tips for reducing pain are also welcome. And anything you"seasoned professionals" (ah, the bitter irony of it) think a newcomer to thecrowd wouldn't know to ask, that's great too! Thanks a lot, ladies! I wish you all lots ofluck (wish me the same!).
Commentto ktartsy@hotmail.com- your symtoms and history sound pretty much like mine. I also donot have a history of any kind of yeast infections, bladder, or urinary tract infections.I began to experience burning pain with intercourse after my son was born. he was mesecond child. I did not have a traumatic birth with him but did with my daughter, firstborn a year earlier. I also suffer from painful bowl movements and the pain withintercourse became everyday pain about 2 years ago and it's been hell ever since. Here ismy theory to my pain and according to my chiropractor and vulvadynia doctor, I may verywell be onto something. At 15 I was trown off a baarn roof and landed squarely on my buttwith the tailbone taking the full brunt of the fall. Yes very painful but quicklyforgotten. Than approximately 10 years ago another, and worse blow to the tailbone.totally broke it, never had it fixed. When if finally found a word for the burning painwhich ofcourse was vulvadynia, I began to investigate, and found that the is a form ofvulvadynia called pudendal neuralgia,which means damaged pudendal nerve which is the nerveat the base of your spine and controls all the feeling to your abdomin and genitals. Mytailbone was smashed and lies paralell to my spine. I am at this time having adjustmentsto it. not a comfortable procedure, and definately not for the shy or modest type. Mydoctors name is dr. benson horowitz, in enfield connecticut. He's is a specialist invulvadynis, very compassionate, kind and funny man. Has alot to say about this problem.. Iam on 150 mgs. of elival(amitriptiline). I started getting some relief at 100 mgs. Theidea is to keep going up until the pain is completely gone then you staqy at that levelfor 6 months and you start coming back down.. He says eventually you are pain free andtotally of the meds. his phone number is (860)236-5431. I am from Vernon VT, and it takesme about an hour to get there, and the appointments are not very often. only been there 3times since last june. Let me know if you decide to go to him and hoe it turns out. when i finally learned the term for the burning
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CommentHi, I am in the process of trying to find out if I have this condition. Looking for asmuch information as I can find.
CommentI thought I would let you all know that I have been having acupuncture twice weekly forthe past 2 and a half weeks, with another session coming up next week, and have definitelyfelt an improvement in my vulvodynia pain. I've had vulvodynia for 3 years, with a 6 monthreprieve last year after laser surgery, but it came back again when the nervesregenerated. I am also following the low oxalate diet, am on anti-depressants, and usingVitamin E oil 6-7 times a day and washing after urination. Whether it's the acupuncturethat's helping, or a combination of the above "extras", I don't know, but I'lltake it whatever the reason! I will let you know how I progress in case some of you feelit would be worth trying acupuncture.
CommentI just wanted to THANK YOU for making such a WONDERFUL web site! It's nice to know thatthere are Doctors out there that really do care and take the time to explain such rarediseases! Thank you for giving me so much information on vulvar vestibulitis. I am totallyrecovered from the vestibulitis after 2 1/2 years! I had a great Doctor, fortunately, thatfound it and treated it! I just like to visit web sites and get info in case it ever doescome back because my Doctor has recently retired. I also like to try to give peoplesupport in chat groups. Thanks again for your info and support! - Heather
CommentI've had this for at least 8 years. I went through hell until I finally found out whatthis was. A horror story. Lots of doctors and being told that it was all in my head,surgerys medications, the whole nine yards. I've been taking calsium, and a antidepressant and a low osalate diet. It has helped alot for 3 years. I'm going to take thisnew information to my doctor and see if I can have a wack with this. Thank you so much forthis website. I will be coming back! Got to go now! Michelle Longbottom
CommentWORDS OF ENCOURAGEMENT. I posted an entry in the guest book almost a year ago reportingimprovements with my vulvar vestibulitis. Like most of you out there I tried alltreatments available except surgery. I began my healing process with acupuncture andexperienced some positive results. However I still believed I could improve even more, soI sought out a biofeedback therapist. I feel this was the break through I was looking for.Biofeedback gave me the control I needed to relax the pelvic floor muscles and continuethe healing process of the vulvar tissue. At my worst it was painful to wear pants and sitfor long periods of time and intercourse was out of the question. Now my vulvar pain isgone and intercourse is now 90% pain free. I continue to use biofeedback and believe Istill am improving. I never expected to have improved as much as I have and I want toencourage all of you not to give up hope. If you have any questions about my experiencesplease feel free to contact me.
CommentI have just tried to send an e mail to Opra but are having great difficulty with it. Inthe meantime I would like to report thaat there was a short story on the 5 pm nws at WABCchannel 7 this past Wednesday, reported by Diana Williams. She called it the "silentdisease". I personally did not see it. but several of my friends did. At least thereis some hope that we might get heard.I urge you all to contact the Opra Winfry show. Ithink this is our best bet. I did locate a doctor in NYC who treats vulvadyniaexclusively, but as luck would have it, does not take any new patients.So what are we todo? Not even on a wait-list . Hulda
CommentAfter suffering constant burning pain since Nov., I have finally been diagnosedw/vulvovestibulitis. This website has been a wonderful help to me--I have felt so aloneand different these past few months, it's such a relief to know that you all are outthere, trying to cope. I'm on estrace cream and effexor(an anti-depressant). So far theestrace seems to make the burning worse, but I'll try it awhile longer b/c my docorbelieves it to be my best chance for a "cure". I would love to communicate viaemail with anyone new to VVS....I am only 24 and can't imagine having to feel this wayforever. I'm a college student, and this condition has really made it difficult to sitthrough a 2 hour class. To Heather who recomended trying Astroglide--THANK YOU, that hasbeen helping so far. Good luck to all--I know I will be checking this site all the time!!
CommentTo the woman who was inquiring about doctors in the San Fran area, there is a Dr.Kresch who practices in Palo Alto. I am not sure of his number or address at this point,but could find them for you. I went to him once after a series of treatments (including aperineoplasty surgery), and he suggested massage therapy, or myofascial release, which washelpful. So my experience with him was more positive than some and I believe he's supposedto have a strong reputation in the area. Also, to the woman who was inquiring aboutbiofeedback possibilities in this area, Dr. Christopher Payne and Dr. Anderson of theStanford U. Hospital's Urology Dept. are supposed to be very good. Their number is650-723-6024. I'm actually curious about the connection (?) between lichen schlerosis andvulvadynia. I've been diagnosed with the latter for about 5 years now and just had abiopsy which reported the lichen schlerosis. I noticed a few women mentioned thiscondition. What's the relationship, if there is one? Anyway, hope above info. is helpful.Also, to the woman who mentioned a conference, I would be thrilled. I'm in the Bay Areaand would also be thrilled if anyone who lives in this area would want to start a supportgroup, or even just meet once to put faces with stories. Thanks for everyones comments andsharing.
CommentHi, everyone. I am curious about biofeedback and acupuncture. What kind of doctors dobiofeedback and do they seem to know about this disease?? I am just curious, because everygyn, allergist, dermotogist, and family doctor I have been to has to be given a run downon this whole disease. I would appreciate any comments. Thanks
CommentTo Susan regarding biofeedback therapists -- after a lot of searching, I finally foundone that focuses much of her practice on women's health issues. She is a PhysicalTherapist, although I know other kinds of health practioners do biofeedback therapy aswell. I found her on a web site and through the Vulvar Pain Foundation, after making a lotof phone calls to various kinds of practioners. When I called her office to make the initial appointment, I confirmed that she dealtwith vulvar pain (and FYI, I've noticed in the insurance paperwork, they are referring toit officially as "pelvic floor dysfunction.") I don't know if this is going to solve the problem, but it is a great relief workingwith someone who is familiar with and extremely sensitive to the problem.
CommentTo anyone with similar symptoms or suggestions: Recently diagnosed with vulvodynia. Notsure diagnosis is correct. I have burning andsharp needle like sensations with physicalactivity. This pain goes from the right side of my labia toward the joint of my right leg.I also feel heat radiating from my right and left sides of my hips. This all began with ahamstring injury which was resolved through physical therapy. I have been looking for ananswer for 11/2 years and feel very frustrated. I do not have trouble with sexualintercourse, but feel the constant burning. I initially thought I had hemroids(Spelling??)and used preparation H on the perineal muscle (I believe that is the correct name. It isbetween the vaginal opening and the anus) Any suggestions or advice I would deeplyappreciate. kathy
CommentI am doing this from work, so I don't want to put my Email on this. I have hadVulvodynia for 12 years. I used to just have burning about a week before my period for afew days, then of course during the period due to irritation from the pads and once in awhile in between. Sex during the 12 years has been painful and was painful for days after.Of course, I went to doctor after doctor who said 1. yeast, 2. in my head, 3. herpes, 4.in my head. I even had one doctor do a biopsy and then stitch me up. The biopsy came backand said skin inflammation (DUH!). After the stitches healed I had a scar at the 6 oclockposition and intercourse would break that open and it would bleed every time. (verrypainful) After many discouraging years, I was sent to Dr. Reid who happened to be inwithin driving range for me. Dr. Reid did 3 laser surgeries on me and at least was able toget rid of the scar from the biopsy, but it did not fix the vulvodynia. I saw Reid back in1991/92. I got pregnant in 1994 and the symptoms were almost completely gone. After thebaby was born, however, I was right back where I started. I am 41 years old now and thevulvodynia is the very much worse. I was wondering since I was better during pregnancy, ifit is estrogen related. Also, that would explain the worsening now, since the older youget the less estrogen there is. I am now treating at U of M Hospital (they have a wholeclinic concentrating on Vulvar Issues). They gave me Neurontin, which provided no relief.This last time, we tried putting me on LOESTRIN (birth control pill) in order to'simulate' pregnancy. I have been on it for 3 months with no relief. They also gave meseveral creams to try, but the creams seem to burn more. I am at my wit's end. My husbandis understanding, but we have gone through alot of counseling because it has gotten to thepoint that I don't want him to touch me at all, let alone have sex. We have not had sex inyears and I feel bad for him. I am on an antidepressant (Paxil) for depression, but I amso depressed right now I don't know how much more I can take. The pain is constant!! Isympathize with all of you and pray for a cure. I just really needed to get this off mychest. Thanks.
CommentI have just begun biofeedback with Dr. Glazer two weeks ago. I'm using a contraption athome called "U-Control" which measures contraction and relaxation of the pelvicfloor muscles, and then strengthens those muscles. Like most of you, I have gone the route of many, many doctors over the past 6 years,all kinds of medications: amitriptilin, nortriptilin, neurontin; acupuncture, injectionsin the spine, all to no avail. I think this is the last course and pray it works. I think this all began when I had a back injury (ruptured disc in lower back). Thegenital pain began at the same time. Can't believe nothing can be done! So, I wonder ifany of you have tried Dr. Glazer's biofeedback and have you had any success? How long didit take? I sure could use some moral support since this is supposed to take nine months ifit's going to work at all. But, after six years, I have nothing to lose. My heart goes outto all of you, and to me, too. Love to all, Abbie
CommentI was reading on the FAQ area of this website and it talked about some supplementscalled Ox-Absorb and Prelief. Both are related to absorption of oxalates. Does anyone know where to find these? I did a search on Yahoo and got nothing on them. Thanks.
CommentI am also looking for information on these 2 products. I am wondering if they areavailable in Canada? Do they go by other names? Anybody have any ideas?
CommentI am so glad to see this site!!! I have read so many of these entries, and have beenable to relate in some way to all of you. My story is pretty typical. I am 29 years old,and live in Southern California. I have suffered through many years of yeast, trichomonas,etc and suffered through many clueless doctors!!! For a solid three years, I was at theGYN office an average of once a month. Because of the HMO system, I saw a different doctorevery time, and each doctor had a different opinion of the tests/treatments I should bedoing. I cannot tell you how many drugs and creams I must have taken!!! Then in early1993, was diagnosed with HPV (by the same clueless doctors!!!) The option they suggestedwas laser surgery - there were precancerous cells on the cervix and vaginal wall. Wentthrough with the surgery..but lo and behold...I was not healing. A few months after thesurgery, my doctor suggested that the reason I was not healing was stress. He asked aboutmy life, and when he found out about the struggles in my life (bad family relationships,school stress, etc), he referred me to a psychologist. However, it was not until 6 months later that I finally was diagnosed. Finally wentaway to finish my degree, and stumbled upon an AWESOME doctor at the student healthcenter. At my first visit, he diagnosed me - vulvodynia. After nearly four years of beingundiagnosed, this doctor put a name to my symptoms. Finally it seemed that there was hope. It has been a long and hard struggle for the last ten years - This condition affectsevery facet of a woman's life!!! Luckily, I have a boyfriend that chooses to not besexually active right now. Thank heaven!!!! I also do the standard things - wear cottonundies, use SA8 detergent (Amway-it is the best!), control my diet, do not use any soap inthat area, etc. There are days when I am pain free, and there are more now than there havebeen in the past. But I feel that there are more things I can be doing!!! If anyone hasany suggestions, feel free to email me. I do have another request. I am interested in knowing how to get through a pregnancywith vulvodynia. I am currently single, but I would like get married and have a child inthe near future. I have seen some of the posts on this guestbook from women that haveactually gotten worse after childbirth, and also accounts of women that developedvulvodynia as a result of a vaginal delivery. Can someone please advise? Anyone iswelcome, but I would also like the opinion of a medical professional. I have confronted mycurrent GYN and his associate about this subject. I have asked both if it is possible torequest a C-Section as medically necessary. They both seem to think that a pregnantpatient would be "hard-pressed" to find a doctor willing to do a C-Section. Ibelieve the idea is that due to mortality rates associated with surgeries, doctorsrecommend a vaginal delivery in most cases. I feel that it should be the patients choice.This condition affects every facet of our lives!!! To be faced with the possibility thatit could get worse is absolutely horrifying!! It makes the choice to have a child a toughdecision to have to make. I do not want to have to choose!!! No woman should have to makethat choice based on what seems to be such ludicrous reasoning!!! Any guidance would beappreciated. Take care to all of you. Hoping for pain-free days for all of us!!!!
CommentSheri, I just saw your inquiry about pregnancy. I had some of the same concerns andexpressed them to my ob/gyn. She knew that I wanted to avoid an episiotomy at all costs.However, when delivery time came around, the baby was in distress and the only way to gether out quickly was episiotomy. It really did not affect the vulvodynia in my case. WhileI was pregnant, the pain was gone. Of course, my husband and I did not really have sexmuch, but the everyday pain was gone. I could not find a doctor or insurance that wouldcover a C section instead of vaginal. I am worse now, because I am 41 years old and think my hormones are dwindling. Let me know if you want any further info. Also, I don't think there is a doctor alive,even the ones that know of vulvodynia that will give you a guarantee that you won't beworse after or during a pregnancy. They really can't because as you can see from thissite, everyone reacts differently.
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CommentMy mother has been suffering with this for more than 30 years. She briefly heard a newsreport on ABC News on 2/23/00 at 4:57p.m. She thought she hears that there have beenadvances made in a cure. Does anyone have any info concerning this newsa item. thank you.
CommentHi, everyone. Has anyone heard back from Oprah yet? Hopefully the producers will seeour points. Anyways, I check this board quite often. I just read someone mentioned theyuse SA8 (an amway laundry detergent) I don't know why I didn't mention this before, butthat stuff is great. Least irritating stuff I've found. To everyone inqiring about pregnancy w/ vvd, I went through a pregnancy with it.Nothing has changed. It stayed the same throughout pregnancy, and has remained the same.Shortly after delivery, maybe for about 5 or 6 months, I was worried things worsened, buteventually things went back to the way they were. I imagine it was just the normal painthat goes along with a vaginal delivery coumpounding the pain I experience anyways. We're going to find a cure girls, it's just a matter of time... Take care.
CommentMarilyn, check out this website for info. on Prelief:
CommentI was diagnosed with vulvodynia in 1994, approx. 6 months prior to my wedding date. Ihad 3 laser surgeries and then I had my bartholin glands removed. I cannot express mythanks and appreciation to you for this informative web site. I received several handoutsfrom my Dr.'s office who was, at that time, completely swamped with patients. I am 100%pain free and have been since my last surgery in Sep of 1994. I have given birth to 2healthy children vaginally and needed a few stitches but have had no negativerepercussions. I must thank my Doctor's publicly, Dr. Reid, Farmington Hills, MI (whocured me and basically saved my new marriage) and Dr. Holan, Pontiac, MI who was aware ofwhat vulvodynia was and delivered my children. This website will SAVE many women fromundue mental, spiritual and physical pain. THANK YOU!
CommentHi all- I was wondering if any of you have heard of or tried SAM-e? It is a naturalanitdepressant. However, they are not cheap. They cost about$1.00 per pill. I was on anantidepressant, but it started to make me emotional. I hvae been off of it for a week now.Well, I will being going to wal-mart to get this and try it. I will let everyone know howwell it works. For mor information go to www.msnbc.com. They had a news broadcast on itlast month. SHERI- I believe that vulvodynia might have something to do with estrogen. Inever had a normal period. I was on the pill. I stopped taking it in Jan 1998 by Aug. 1998I was in pain. Just last month I started the pill again hoping it will help.
CommentThe last entry I read mentioned a Dr. Reid who had performed very successful surgery. Ijust wanted to mention that if the Dr. is Dr. Richard Reid -- he has been sued by severalwomen who made matters much worse. He has now left the States and I believe he lives inAustralia. I am glad that he helped the woman in the guestbook, but I personallycommunicate with a woman who sufferred a great deal from his surgery. Just wanted to letpeople know.
CommentI have only recently begun looking for a specialist in the WA state area. Any ideas?
CommentHello to all: I just found this website a few days ago. Thank God as my life has been a living hell.After more than 6 years I have found out that I am not totally crazy. I, too, have been todoctor after doctor and no diagnosis. I am scheduled for another round of "new"ones next week. I can hardly bear the thought of being humiliated again by theseindividuals who call themselves professionals. I have the most anger of all about the wayI have been treated and ESPECIALLY by several doctor's in large medical centers. I get noanswers to even my most legitimate questions. I have chronic urinary symtoms, which takesweeks to turn into full infections...all the while suffering. No one will do culturesuntil I am almost dead. Also have the vulvar burning. Like all of you, I have beensubjected to every misdiagnosis on earth. The treatments, when they failed, mostly yeastand bacteria and take an antibiotic, infuriated the doctor's I have seen when I returnedin worse shape. Have been humilated by many. The sad part is you break down and cry andthen they confirm their impressions...you need a therapist. There is nothing wrong withyou. Estrogen is the constant "magic" pill as I am postmenopause but I was onestrogen when this started. Only now I can't take it without getting a uti. UTIs causedfrom lack of estrogen but it all goes around in a circle and goes right back to square one- pain and no resolution. When can we get legitimate help for this? How do we get this on the front burner?? Theurologist doesn't do gyn stuff and knows nothing; the gyn doesn't do urology stuff andsends me back and forth, over and over. Of course, the predominate therapy is"mental". I am not coping. One thing I have noticed in urology offices ... isthe immense amount of advertisements for Men's meds. It seems if they have a littleproblem, the entire world swings into gear to find a cause and a cure. Wish me luck. I amfeeling hopeless and tired. Don't want to start again with new Mds but am getting nowhere. Anyone interested in a chat can email. Thanks for listening. Hope we all feel goodsoon!
CommentThank God for the guest books. After more than two years I know I'm not alone. Doesanyone else always have some sort of infection (i.e. yeast, bacterial, or ureaplasma)?Today I got another round of antibiotics, but next time I will still have an infection ofsome sort. If anyone knows of a specialist in Minneapolis/St. Paul, please let me know. Orjust email me if you ever want to chat.
CommentHas anyone seen Dr. Willens in San Diego? I'm wondering what your experience was. I'mconsidering going but the cost is $345.00 just to meet with him. Thanks for any info you can share.
CommentHello, It has been a while since I wrote. I have suffered from vulvar vestubilitissince a teen. I did not really know it until I got married and started having sex. I waswondering why it was never pleasurable and hurt. Not to good for a marriage. Finally afterfour years I found out the name of my problem and got help. The doctor recommended asteroid cream to put on twice daily in four areas around the vulva. It has helped greatly.The only problem is that for the longest time my husband felt that he was hurting me everytime and it has really hurt our sex life. It is non existant even though I am feelingbetter. Now we need help in that area. Getting tired of living like brother and sister.Now I'm wondering what is wrong with ME. Feeling a bit discouraged but there must be hopeand some good counselling out there. Of course i live in a very small town andprofessionals in that topic are non existant. Oh well.. there must be hope. Maybe someonereading this is having the same kind of problem. I would love to hear from you. Andplease.... no sales people.
CommentArashi and others, I have been using SAMe for about 3-4 weeks. During that time I havenot felt improvement. I also tried St Johns Wort in the supposedly more effective tinctureform several years ago (went through one bottle) with no change.
CommentI suffered from vulvodynia for about 12 years before anyone was able to give me adiagnosis for my severe constant unbearable pain. It is a major disappointment to reviewthe information on your site and not see anything about the work of Dr. Richard Reid. Hewas able to cure my condition and give me back my life. There was no way that creams andexercises, which was tried, was going to cure my condition. I beg on behalf of all womenwho suffer from this condition to continue to include all research and keep an open mindto all physicians who know anything about this condition and the surgical procedures thatbrought my relief. I hope I never get this condition again but if I do I hope that thereare effective treatments available including the flash pump dye laser treatments in theU.S.. It is unfortunate that the lawyer who represents Dr. Kavorkian who gives people aright to die caused Dr. Reid to leave his practice here. He was the only one who couldoffer us a chance to live. He was on the right track with his research. I very muchappreciate the fact that Dr. Glaser is interested in finding a cure for this condition butI hope you are not years behind were we really need to be with this disease. Please keepan open mind to others in the field. This is one of those conditions you would have tohave to know just how desperate the patient is for relief from the pain. Thanks for yourtime and keep up the research and treatment as well as the web site!
CommentHi, all -- In case anyone missed it, there was a very interesting article in the2/20/00 New York Times Sunday Magazine entitled, "The Second Sexual Revolution,"which deals with current and soon-to-be-approved medical treatments of male and femalesexual dysfunction. While it doesn't mention vulvodynia specifically, it does mention manyother sexual disorders and the current state of research and treatment. I felt veryhopeful after reading this article because it made it quite clear that WE are not alone,that the medical profession is aware of the many problems involving sexuality that requiretheir attention. And, after such an article appeared in the Sunday Magazine of the NYTimes, doctors would be FOOLS to ignore the problem. You can read the article online(www.nytimes.com/library/magazine/home/2000220mag-hitt9.html); or you can order a reprintby calling the New York Times (don't have the number, but call (212) info. Right now, I've recently begun a program of biofeedback with Dr. Glazer, after havingtaken all the medications currently prescribed, to no avail. After reading this article,I'm encouraged that there will be other meds if this doesn't work. Hope you feelencouraged, too. Would love to get your "feedback" about it. Love to all, Abbie
Commenti think i may have vvd but i'm not sure. i read the FAQ on this site and that too hasleft me confused because although i have a burning sensation in the area it does not hurtto insert tampons and the skin is not dry or torn and nor does it have blisters oranything on it. and i have never injured my back or had sex so i can't say that that couldbe the cause of it either. and i don't know if it could be another kind of vaginalinfection as i have only pain and burning - no discharge. this started at the end of last year when i thought i had a urine infection and tookmedication for it. after that i noticed that i had a burning sensation around my vagina.this lasted a few days and then went away for over a month. then the same thing happened -i thought i had a UTI, took medication and got the same burning again. this time it lastedfor almost 2 weeks. then i had a pain-free week and now it's started again. it startedwith pain near my urethra and clitoris and this time in case it was a UTI i took someherbal cystitis relief tablets. it seemed to work the next day but then i went for anaerobics class and the burning sensation returned. i think maybe the sweat aggravatedthis. it's certainly not as bad as the pain of some of the women on this list. i read theircomments and think that i should be lucky that my pain is not so severe. i haven't been to a doctor though as i really don't know if they'd know about thiscondition. i live in Australia and i never heard of vvd until one day i was having theburning and i got on the net to look up vaginal disorders. in fact reading the horrorstories that other women have told about failed treatments and treatments that made theproblem even worse i'm discouraged from seeking a doctor. as it is i have pain but it'snot unbearable. i don't know what to do as i'm too embarassed to talk to my friends or family about itand anyway they wouldn't have heard of vvd.anyway i'd just like some opinions, anythingfrom people who may be able to help. thanks. sorry for my long ramble.
CommentI sure wouldn't wish vulvodynia on anyone but it's nice to know there are others outthere who can relate to what I'm going through and to share thoughts and sympathy. I havetried everything from loose clothing, unscented toilet paper and allergy free detergent toprozac and HRT. I also suffer from interstitial cystists, IBS, and fibromyalgia. As youcan see, I don't get out of the house much anymore. :o( My main problem is because I don'thave any health insurance, can't work, and husband that has his own health problems, Idon't receive the medical treatment that I should. It's just a struggle to get some painrelief. Same old story that I'm sure many of you can relate to. I would like to hear fromothers as to self-help treatments and stress relief. Thanks.
CommentTrace: You don't have to have discharge or anything visible to be diagnosed withVulvodynia/Vestibulitis. And sweat DOES seem to aggravage the condition.
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CommentSince my first vaginal intercourse at age 19, I experienced vulvar pain. It took me 8years, a dozen gynecologists, useless treatments, biopsies, and thousands of dollars to bediagonosed with vulvar vestibulitis. The most recent treatment recommendation is surgery,which I am afraid to try. What pains me the most is the horrible psychological trauma Ihave experienced when lovemaking. It was intended to be the most pleasurable physical andemotional activity in the human world, and WE will never know what that is like. May therebe mercy for us in Heaven.
Commenti know i don't have to have discharge to be diagnosed with vvd. that's why i said icouldn't have any other vaginal disorder. but do you have to have dry skin there? that'swhat it says in the FAQ on this site and i don't. and i don't feel pain when insertingtampons either. can that happen too?
CommentIt's with mixed feelings that I found this website. I never heard of vulvodynia. Mylatest and newest doctor's visit was because of my newest and latest pain in my clitoris.I explained my history, again, but he didn't like the coloring and was concerning about,maybe, precancerous cells in the "vulva" area. So I started searching the web,and here I am. I started reading ALL the guestbooks, and my God, every sympton, I meanevery. And the medications. Boiling underwear, no underwear, the pain, burning, dryness,painful intercourse. For me, it's 12 years. Had warts, had laser surgery and it all began.I've been to the best doctors. Personally, I feel the laser was the cause. I did think theHPV wasn't helping matters, but many of you did not have warts. I do think that many ofthe creams for the infections definitely don't help the burning. I have constantinfections; yeast/bacterial. I'll get an infection within 4 days after intercourse. I getan infection, no kidding, from crossing my legs. One time I was given 12 flagyl pills, atonce, medicated douches, and some kind of violet dye. I asked my doctor are we talkingnucleur war or infection! Oh it cleared up finally, but a few weeks later it was back. Ihate this whole thing. I hate running from doctor to doctor. And believe me, I've seen thebest. One doctor felt confident this would all pass when I go through menopause. Well I'vebeen through menopause -- I'm 54. I HATE calling for another appt to have the nurse say"again." My husband is good about all this, but when he wants to make love, andI say I have some burning and think I'm getting an infection, I feel he has that look likethe nurse; again! Well like I said, it's with mixed feelings finding this site; I found aname for what I have, but feel there doesn't seem to be much hope. But that hopeless doesgive way knowing, for once in 12 years, when I go to the dr. AGAIN, I'm not alone. I amhappy I found this site, because I found all of you, and I'll be back AGAIN.  |
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