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CommentVulvodynia guestbook 17 is now open. Please excuse the period of time duringwhich the guestbook was unavailable for postings. I would like to make some suggestions toavoid such problems in the future. The vulvodynia guestbook was set up with the storageparameters of a guestbook which are fairly limited. The guestbook was for initial visitorsto post entries regarding their condition and their experience in visiting the site.Ocassional posts from those returning were expected. However, the guestbook was not set upas a bulletin board for continuous interchange between visitors. For this type ofinterchange I set up the vulvodynia email lists which have archives to allow all previousposts to be viewed without taking up storage in my local server. On the email lists thestorage is performed by the service provider, in this case yahoogroups.com. In order to avoid future episodes of overfilling the guestbook I would ask you all to engagein ongoing communications by using the vulvodynia email lists or the vulvodynia chat room.To join the vulvodynia email lists/chatroom just scroll to the top of this page and clickon the left-side highlighted words "Mailing List" and follow the instructions.There are several hundred members of the email broadcast lists. The email lists alsopermit you to communicate privately with each other by exchanging email addresses. Once you have signed up on yahoo for the vulvodynia email lists you will also have accessto the vulvodynia chatroom which permits realtime interaction amongst visitors. To accessthe chatroom just click on the highlited words "Real Time Chat" that appear onthe left side at the top of this page. I hope that this clarifies the situation andcontinues to meet your needs. I thank you all for your continued participation in thiswebsite and welcome any suggestions you have.
CommentHello, all--I wanted to issue a call to action from this guestbook to respond to anepisode of HBO's "Sex and the City" last night (6/3), in which Charlotte isdiagnosed with vulvodynia. The issue was handled in such a cavalier way, basicallysuggesting that taking an anti-depressant for a week and screwing up your courage to lookat your vagina in the mirror will take care of the problem. The most painful part--scenesfrom next week's episode, in which Charlotte and her ex-husband Trey have sex on thekitchen floor. I've written a letter at hbo.com (under "Talk to HBO) and I urge you all to do thesame, insisting that if the show is going to raise an issue like vulvodynia, the leastthey could do is present it in a way that isn't insulting, misguided, and utterlyupsetting from those of us who suffer from this terrible problem. Thanks so much, Holly
CommentHi, I saw the episode of "Sex in the City" too and thought the mention ofVulvodynia was a double-edged sword. On the one hand I thought "wow - finally thiscondition is getting some attention as a problem that does affect lots of women" andthen I thought "but for people to think it's just a little itching that ananti-depressant will take care of and then you can go about your normal life" hurtsus rather than harms us! I wish they would show Charlotte unable to have sex b/c of thediscomfort or something more realistic. But all in all, I think HBO deserves some propsfor even mentioning it. After all, they show Charlotte's husband unable to"last" for more than a minute and make a joke of it! As far as writing to HBO though - I think it's a great idea. Maybe they'll at least putsome info out there via public service announcements.
Commentdoes Johns Hopkins have info. on Vulvodynia?
CommentDr. Glazer, Thank you for setting up the seventeenth vulvodynia guestbook. I agree thatwe probably shouldnt clutter the guestbook with posts when we can use the list serves. Iwould like to say that I have noticed that there are many people who post regularly on theguestbook that I do not hear from on the list serves (I am on 2). I like to use theguestbook to ask questions from thease people, and share information in hopes that theywill contact me off the guestbook. I also like to respond to peoples questions or comentsleft for me regarding something I posted. I think that there are people who use the guestbook who would not normaly spend thetime to use a list serve, or who only have a computer at work, or who are too embarrasedto have anyone know who they are but are seeking answers( I have noticed alot of poststhat are anonomous). It would be great if the guestbook where set up in such a way that it could be used inthis way without the problems you spoke of. Christina
CommentI would like to use the lists to communicate with others, but I do not now how toaccess them. Could someone help me with this matter. I have currently been suffering fromVulvodynia for 31/2 years. Thanks
CommentDon't know how well this will copy paste, but here is theinfo from Lauren that Frankmentions in the last guest book...this info kind of fits with my theory of the bacterialinfection...and also, I wanted to mention that Jen had said that she thinks maybe it isviral...there are many reasons to think that by judging the way it behaves, also it couldbe prions, or some other microscopic thing we don't even know about. It is just hard toignore that there is a subgroup of people that began this hell with a new sexual partner. Here's the article.... Bacteria Hide in Urine After Antibiotic Treatment NEW YORK, May 29 (Reuters Health) - Bacteria may be able to survive antibiotictreatment for bladder infections by reverting to an inactive state, according toresearchers from the University of North Carolina at Charlotte. Presenting at the 101st meeting of the American Society &n! bsp; for Microbiologyin Orlando, Florida, Hadley Hartwell explained that bladder infections caused by E. coli,a common bacterium, return in as many as 30% of women apparently cured by antibiotics.Until now, the reason was not always clear. &! nbsp; Hartwell, along with Dr. ToddSteck, studied the ability of bacteria to survive exposure to antibiotics typically usedto fight bladder infections with a test that compares survival with the reproducingactivity of the bacteria. According to their laboratory experiments, the number of &nbs! p; bacteriareproducing dropped to zero within several days of antibiotic treatment. Not all the bacteria were killed, though. The test showed that about 3% of the bacteriawere still present in a dormant state after treatment with ciprofloxacin and about 7%lingered ! after treatment with trimethoprim-sulfamethoxazole. Even after a month of antibiotic exposure, 10 million of the original 1 billionbacteria remained, the researchers report. The investigators conclude that antibiotic treatment does &n! bsp; not successfullykill all the bacteria participating in the infection and may, in fact, encourage many ofthe bacteria to persist in a resting state. Current treatments for bladder infections, they sduggest, may, therefore, not beadequate and this phe! nomenon may account for many of the repeat infections.
CommentHi all. I'm glad to see we're up and running again. I saw Sex and the City as well andI really didn't know how to feel. I'm glad they brought awareness to the condition, butthey did it the wrong way. They joked about it as if it was no big deal and as if it canbe cured. But we all know better. I don't want to waist my time talking about that show. I've just been diagnosed with having a UTI. I'm a little worried now because the doctorhas put me on "SULFAMETH/TRIMETHOPRIM" which is an intibiotic and I don't wantto get any yeast infections. I'm worried you guys! I'm very prone to yeast infectionsthough I havne't had one in 2 years. Please offer some advice if any. Thanks much! I'mgoing to stay away from sweets and milk for the next 2 weeks.
CommentI noticed a post concerning use of the broadcast email lists. If you scroll to the topof this page, on the left hand side, highlighted, you will see both "Real TimeChat" and "Maling List". Just click on them and follow the instructions. Iwould be happy to co-ordinate specific times for group chats on specific subjects, or tocome and answer questions myself at specified times. The email broadcast lists are anideal medium for ongoing communication, and now have over 800 members. I most certainly dowant to keep the guestbooks active as they are the most frequently visited part of thewebsite, BUT....for ongoing communication the email lists and the chat room are muchbetter suited.
CommentI did not see the Sex in the City episode, but my sister-in-law watched it for me.Correct me if I am wrong...we don't know if she is just going to "just becured". Most people in the beginning don't understand that this will go on--mostlikely forever--interfere with relationship, and send you into anxiety and depression. Theonly thing that seems very unrealistic to me is that the doctor new right away what itprobably was, and prescribed the anti-depressants, which typically is prescribed by docsthat are very familiar with chronic pain/vulvodynia. Rarely would a typical GYN get all ofthis. For all we know she will begin to get very upset in following episodes, and begin tobehave like us, and share more and more vulvodynia info. Do you think I am way off base with this? I am very interested in your opinions.
CommentRegarding Sex and the City, I heard that next week Charlotte will be having sex on thekitchen floor. That seems very unrealistic to me since antidepressants don't work thatquickly and any of us know that intercourse is extremely painful to downright impossiblewhen you have Vulvodynia!!!!!
CommentLynn: If you must take the antibiotic, please consider the following precautions: areputable probiotic (usually containing a high quantity of lactobacillus *AND*bifidobacterium. Yogurt may cut it for some ladies, but I believe vulvodynia patients arealready suffering from a weakened immune system, and need those extra beneficial bacteria.I would also approach your doctor and discuss the possibility of taking Diflucan whileyou're on the antibiotic. If this isn't an option, start supplementing your diet withgarlic. I've read that 2-3 cloves a day should keep yeast growth to a minimum. These areall merely suggestions. I will certainly be following these precautions if I'm everprescribed antibiotics again. Also, regarding the UTI--has your urine been cultured? I certainly hope so! That is theonly way to correctly identify the bacteria causing the infection. Many urologists are nolonger following the 7-10 day course of antibiotics routine anymore. Ask your doctor ifyou can come in for another urine test 3-4 days after taking your antibiotics. Otherwise,you may be taking them for longer than necessary. If you get a chance, read "YouDon't Have To Live With Cystitus", by Larrian Gillespie. It's a very enlighteningbook, although she really doesn't discuss the possibility of yeast causing a lot ofwomens' woes. I think it's gonna take a few more years before that research takes place!Hope this helps. Jennifer and all: I watched the "Sex and the City" episode. I noticed MichaelPatrick King wrote the episode. He's also one of the producers. The episodes always seemto follow a theme, and "taking a good look at yourself and accepting what yousee" or "are you really what you see in the mirror?" seemed to be what hewas exploring in this episode. I really don't have a clue where he may be going with thevulvodynia story, because I noticed the next episode has Charlotte having sex with herhusband, as some other ladies have mentioned. Soooo, about the way the entire issue washandled...well, I can honestly say it didn't upset me much. Charlotte asks Carrie if sheknows of a really good gyne, and Carrie asks, "Why?" Charlotte scrunches up hernose and says she thinks she has a yeast infection but it's sorta different. Then we see ashot of her face during the examination. The gyne snaps off her gloves and is verymatter-of-fact. She says it's not yeast (this I think is realistic, how many of us haveactually had an accurate yeast culture? Hands up? I don't expect many...) She tellsCharlotte she has a whole file of women with the same symptoms. Antidepressants will helpwith the symtoms. She also wants her to keep a journal. The gyne is VERY matter-of-factand not the least bit approachable or forthcoming with any additional information, such assupport group, optional treatments, etc. I thought this part sounded a lot like what manyof us have gone through! The scene in the deli where Carrie, Miranda, and Charlotte didn'toffend me either, because it seemed Cahrlotte didn't realise the seriousness of hercondition (due to lack of guidance from her gyne). Miranda and Carrie were kinda teasingher, but I think that's probably what friends would do if you weren't crying sand upset, Iflet they were kinda trying to cheer her up because they felt the antidepressants wouldcure her and life would go on. Oh, and about HBO, they actually have a little blurb on the"Sexa and the City" web-site under that particular episode write-up aboutvulvodynian and how you can contact the NVA for more info, so I thought that was greatthat the NVA got through to them and made them realize that would be a very good PR move! Sandee
CommentTo Lynn: Please consider using some type of Pro-Biotic supplement. These are availablethrough a good health food store. One such product is PB8 their site iswww.nutritionnow.com . The anti-biotic kill bad and good bacteria, this product helpsmaintain the balance. Best of luck.
CommentHi, all--I have read with interest the discussion about the "Sex and theCity" episode. I think my first reaction was a little extreme, but this is because Ithink the show is dippy and I felt that the way the issue was raised was shallow. PerhapsCharlotte will realize the seriousness of her condition later on, perhaps not, but I dothink the omission of sexual issues just doens't fit with what 99.9 percent of women withvulvodynia experience. And kudos to HBO for putting up the link on their website, but Iimagine there are some women who have painful intercourse and gyno exams but no constantitching and burning and won't be helped by it. I will be patient though and wait to seehow it is treated in future episodes. Meanwhile, I've heard about using magnets for chronic pain help. Is this just for backpain, or has anyone tried it for v.v.? Thanks, Holly
CommentI am from Canada and I cannot find a doctor close enough to me that can prescribeEastrace cream. I have heard many good things about it and would really like to give it atry. Does anyone know if you need to have a prescription for this cream in the UnitedStates? I live very close to the border so going over would be no problem. If so, how doesone get a prescription when their OB/GYN and family doctor fail to give you one.
CommentSandee, thanks for your impression of the Sex and the City episode. Sounds like we kindof think the same way about it. Even on the off chance Charlotte is all of the suddenbetter, at least the name of the disorder is out, and hopefully if all of a sudden she isbetter, they will at least acknowledge that it probably was not vulvodynia and discuss alittle how horrible it would be to suffer with that type of pain all of the time.Charlotte having sex next week does not mean much when it comes to the vulvodyniathing...how many times have people had sex when it hurts, just to bring some normalcy to arelationship....I did it for years! We have heard Frank share that his wife wants to havesex, even though she gets cuts, etc. So I still think that the show could go a variety ofdiffferent ways with this. I wanted to talk about the probiotic thing. I do not have a strong opinion about usingthem, but I wanted to share that two of the women with vulvodynia that went to Toth had anovergrowth of lactobicilli. One confirmed that she had taken tons of acidopholous. Thereis a condition, cannot remember the name, that entails TOO MUCH lactobiccili. I know thisis probably the last thing people want to hear, that now you have to worry about too muchof a good bacteria.
CommentStephanie--A prescription is needed for Estrace cream. :( I hope you find someone whocan prescribe it. Note to all: I didn't see the "Sex and the City" episode but think it may notbe completely bad--there are so many different levels of vulvodynia. Mine has been treatedfairly successfully. By that, I mean that after lots of different treatments I'm finallyat the point where I can usually have sex with very little pain, if any. I'd like tooutline the various components of my treatment, but I also want to emphasize that I knowthese don't work with everyone. I'm well aware that many of you have tried everything Iwill mention and still aren't doing better. So I'm NOT someone who says, "Oh, here'sthe easy answer; it will definitely work." But maybe a few of you have vv that iscaused by the same thing mine is caused by (whatever that is!), and perhaps thesesuggestions will work: 1. Medications: I'm on Serzone (antidepressant), Estrace cream, and Estrace pills. Wordto the wise: Take Serzone at night; it can have some nasty daytime side effects (fromfatigue to dizzyness.) 2. Cheap-o lubricant: I use plain shortening several times a day,and it has helped a lot. I used to have no problem with dryness, but when I got vvsuddenly I'm VERY dry. I'm sure a lot of you know what I mean! Make sure you wear apantiliner if using the shortening--it can seep through panties and pants. I find thatshortening really stays there, unlike water-based lubricants. 3. I don't wear jeans, tightpants/shorts, or pantihose anymore. Skirts and loose pants or shorts are okay--skirts aredefinitely best. Thigh-highs are good, or, if you're really feeling risque, get somecrotchless pantihose at a lingerie store. 4. God--I know not everyone believes, but I'msharing what's worked for me--and just knowing He's there has helped, even though it maynot help the pain itself. I hope this helps some of you. I know that many of you have tried treatment aftertreatment and haven't been successful. I've been fairly lucky, but I hope that HBO choosesto show a case that's really tough to heal, or even chronic. I'd prefer for America to seea bad case than an easier one so that they know how serious this condition can be. BTW, I signed up for the listserve the other day, and it's pretty cool, and easy tosign up for.
CommentOne more note: Instead of tampons or pads I use Instead, the little cups that fit overyour cervix. You can wear it longer, and it doesn't dry you out, so it can be lessirritating than a tampon. And it's made of good materials, no latex or anything. They havea website, www.softcup.com, and you can even request a free trial package. (And if youhave a day with less pain, you can even have sex with it in!) It's been a lifesaver forme. If you've got specific questions, please e-mail me. I'll get them faster.
CommentHello everyone - This is my first post, and I actually don't have too much to say about my symptoms, asmy symptoms have already been stated by the rest of you many times over. I have been in touch with Jennifer and have been to see Dr. Toth in NYC. I have not hadany success yet, but promise to share every detail as soon as I do. I am posting this in response to Sandee, who on 5/25 complained about"pimples" along her jawline and elsewhere while taking antibiotics. I have thesame problem with some antibiotics, especially if I have been in the sun. In my case, it was actually yeast, but on the surface of my skin, along my jawline andacross my shoulders. The same thing happens to my sister. She told me what to do and itworked perfectly: Get Head and Shoulders shampoo in the NAVY BLUE bottle (not the regularstuff) get the plain shampoo, no conditioners or anything. Use it in the shower, lather upsome in you hands, cover the affected areas, wait about 5 minutes, then rinse off. This always does the trick for me, hope it helps. I hope I can post some good news so share with everyone soon!! Christine
CommentSEX AND THE CITY: I have been talking and reading alot about the show since it was onSunday night. I have been told it was a good thing that vulvodynia is finnaly getting someTV time, but thats all I know is how it made me feel. I went through a range of emotions...From I can't believe someone is finnaly going totalk about it to crying when they all started making jokes. Now its not that I can't takea joke and I often use humer in tough situations. But the fact that there was not one bitof concern, really upset me. There are so many levels of pain and different symptoms that women may have it ispossible that Charlotte will be able to have sex next week. But they must also realizethat they just gave her a life altering condition, a chronic pain illness. And as all ofus know it can really get you down at times. Which is probably why I started balling whenthey were all making jokes and her doctor brushed her off. Anyway, I still don't know if it was good or bad. But I do know that I feel like I gotpunched in the stomach Sunday night. A blow that has put me in emotional downer and I hadbeen doing pretty good lately. take care all
CommentI haven't read all of the posts and I can't comment on Sex and the City beyond I do notsee it but at least they bring up the condition. Sometimes good comes out of bad, this misinformed mention might turn into something positive. Lastly Jennifer mentioned somethingworth looking into, the overuse of good bacteria. I have not heard of this condition in myreading but that does not mean anything. People often think more of a good thing isbetter. Use good sense when considering anything you read here. Jennifer sounds like abright person and I'm sure she is correct. Take what you read here and investigate foryourself.
CommentCheck out the NY Daily News this Thursday June 7th - www.nydailynews.com. There's goingto be an article on Vulvodynia. I don't know what section it's going to be in.
CommentThanks Frank and all for your advice about the probiotics. The doctor that prescribedit to me is not my vulvodynia Dr. I'm so scared to take this antibiotics. But I have to socan get rid of this UTI. But I'm going to go buy some PB8. Can anyone tell me where I canget it from? I have something else to say about "SEX AND THE CITY". I HONESTLY don'tbelieve that Charlotte will ever experience on going pain since she was SUPPOSEDLY treatedfor the codition. Her doctor specifically said to her, " You have Vulvodynia. Don'tworry about it. A lot of girls have it and complain about the itching, the burning etc..I'll give you some antidepresants that will take care of the problem" Right theretells you that her condition is normal and isn't anything that can't be treated. Thenafter all that, she went and told her freinds what her doctor said about her having tokeep a journal of her Vulva pain. All her freinds laughed (and so did she) as if it wasreally not all that serious. It was like a big joke to them. Well my opinion is that sheis SUPPOSEDLY CURED now and I don't think that she will ever experiece any more pain. I don't know why the producers of the show picked our condition to make a big joke outof it. Perhaps someone, or so many people actually wrote the show and asked that theybring awareness to this condition. They probably got tired of getting letters and Emailsand just finally decided to do an episode about it. Perhaps they think the codition isstrange(which it is) so they made jokes out of it and at the same time, they brought aLITTLE BIT of awareness to it. They didn't take the condition seriously obviously. I AM SOSURE THAT CHARLOTTE WILL NEVER HAVE ANY MORE PAIN AGAIN! That's all that I have to sayabout SEX AND THE CITY.
CommentHi everyone. I've posted here many times before; but not recently...I have a very long story that Iwould rather not repeat. Instead, once I do repeat my point to my very long story, I willleave you with the dates that I have posted in the past if you'd like to read more. Insummary, I began burning in March of 1994...After seeing specialist after specialist (for4 1/2 years...); being prescribed you name it, I was on it...topicals and orals (steroidcremes, yeast cremes, antibacterial creams, antidepressants, anticonvulsants, Myofascialrelease, Biofeedback etc...etc...etc...Sound familiar?) I began seeing a GYN who doesroutine yeast exams when I see her and based on her findings (which are none in my case)never prescribes anything of the antibiotic sort. She explained the whole goodbacteria/bad bacteria thing and how so many (of my ) Dr's were (obviously) dumfounded bymy symptoms, and would prescribe 'stuff' anyways!!! Nobody (including my very own self)knew that this burning is directly related to an injury to my hip I had 5 months before myburning actually had begun! In December of 1998 (yes, 4 1/2 years later...), I saw a PTwho confirmed that my body was out of allignment; thus making all my muscles in my hip andlower back area in spasm...thus causing burning in my vulvar. She has me do exercises tokeep my hip/back in allignment and she does deep massage therapy and myofascial release.This makes sense but what I found out in April of 2000, makes even more sense. I beganseeing a chiropractor who is licensed to practice Active release technique...This is NOT aroutine chiropractic adjustment. This is a hands on manuever/massage technique. Heconfirmed that the muscles in my hip flexor were a 'mess'...scarring andadhesions...etc...The scarring has entrapped my genitofemoral nerve (which runs rightthrough your hip flexor into your vulvar. He has been working at eliminating this scarringfor over a year now. I have had more periods of being pain free for longer and longerperiods of time...Initially, I saw him 2-3 times/ week for about a month and then for oncea week for almost a year...Now I am able to see him every 7-10 days. I go even if I ampain free...and If I'm having an acute episode, I see him 2 times per week and it'susually gone within that week. This is it. This is my cure. I need to share it (again)with you. I will not preach, just advise...but girls, unless you KNOW for sure that youhave bad bacteria and/or yeast and anything else surely abnormal down there, stay off themeds. Go get checked out by a Physical therapist and/or chiropractor. Honestly, I had noidea (obviously) I had hurt myself so bad...It is so hard to get 'caught up' in thegynecological aspect of this. I know...I have been there. Sometimes I 'go back'...Lastweek I was in the middle of a bad episode and convinced myself that I had an infection ofsome sort. NOPE...nothing. I am so thankful I have found the right doctors. Again, I dounderstand that some of you do have legitamite (sp?) abnormalities in cultures downthere...But for those of you (and I know there's still quite a few) who have heard"There's nothing abnormal showing up; Everything's 'normal'....But I'll prescribethis and this..." PLEASE get help outside the GYN world. Here's a list of the pastdates I posted if you're interested; feel free to e-mail me. I hope I've helped someone.11th guestbook 3/28, 3/29, 4/1 (mary re ART) 13th guestbook 6/27 14th 10/9 and 15th1/15/01, 1/16, 1/18, 1/29, and a couple more... Best wishes. Tammy
CommentI wanted to be clear that when I talked about the probiotics, I do not have an opinionone way or the other, I just thought I should share what I know. I went ahead and got alittle info for you... "Cytolytic vaginosis (CV) is the current term for a conditionof lactobacilli overgrowth. It is a little recognized but common cause of cyclicvulvovaginal complaints in women of reproductive age. CV is often misdiagnosed ascandidiasis and most women have tried many antifungal medications both conventional andalternative, with little or no relief." The thing that is confusing to me is that I doubt that this condition is what startedthe vulvodynia pain in the first place, and most vulvodynia patients have a very low countof lactobiccili, but there could be a subgroup with actual overgrowth which is compoundingthe problem. I never really pursued reading about this so my knowledge is limited, but Ifigure if you are interested you will look it up for yourself.
Commentforgot to put the website I got that quote from
CommentThank you Jennifer as well for your opinion as well. But I had to go take Franks adviceand I just went and bought some PB8. I'm so scared to get a damn yeast infection! I camethis far and I'd hate to deal with anymore pain. But I thank you again and I'm only goingto take it for 10 days (which is how long I'll be on my antibiotcs) Bye now
CommentTo Jennifer: Thankyou for the education, I printed out the article so I could read itover more thoroughly. I'm willing to bet not many Gyn offices check for this condition. Ithought I was pretty well informed on things such as nutrition, supplements and issuesconcerning my wife's gynecological health. This proves once again there is so very much tostill learn.
CommentLynn, my gut feeling is that it is a wise decision to use probiotics such asfemadophulous, or other lactobacilli products while taking antibiotics...the question inmy mind is, "is it wise to use these on a consistant basis?" Many women do, andI think it is very interesting that the article states that this condition can mimic ayeast infection due to its cyclical nature. How many sufferers complain that they feelmuch better once their period comes? This same group has many times been told that theirdoctor did not find yeast. The conversatiuon Frank and you were having sparked me to sharethis info. I never read much on this, because I had a low to moderate lactobacilli count and I wasmuch worse during my period. Glad you found the info interesting. I hope I did not cause you more anxiety aboutworrying about too much lactobiccili.
CommentI wanted to say that most of what I write about comes from reading Medical texts. Ihave one that I consider my vulvar disease bible (I will get you the name when I am hometonight). I get quotes and post websites from the internet for convenience for myself andeveryone here, but I do not really take something as fact, or to heart unless I read in amedical text or from medline and even then in can be bad info. As you surf the web becareful. I think we tend to take anything in writing as fact (when I say "we" Imean people in general about everything from what the best type of corn syrup to use inpecan pie to vulvodynia) and people basically can write down whatever they want with nofacts supporting it. I am especially weary of information that is followed by what product you should buy,which is seen a lot with herbal/natural remedies. Pharaceutical companies as well dothis...there advertisements in magazines seem like informative help for what ails you, butin the end they are pushing their product. Medical Texts are based more on ClinicalObservation and studies...going to a medical library for a few hours one day can be veryinformative (and stressful). Regular libraries will not have these types of books. It is awhole different world in a Medical Library.
CommentFrank, I have read your postings intermittently and want to say what a great guy Ithink you are. Hang in there no matter what. Your wife is lucky to have you. I too amfortunate to have a wonderful and supportive husband --even though we've not had sex forfive years. To everyone else, I want to say that getting a custom-made cushion might bethe answer to your problems. I am going to a rehab institute tomorrow and they are goingto do a computer map of my derriere. I hope this will allow me to work pain free. (I'vebeen off work for 3 1/2 months but am slated to return June 18th.) Unfortunately, I have aseverely pinched inferior gluteal nerve as well as pudendal neuralgia --a douoble whammythat makes sitting an even bigger deal for me. BTW I wrote HBO about that Sex and the Cityepisode (Executive Producer, Sex and the City, HBO, 1100 6th Ave., NYC, 10036). I hopeeveryone else writes, too.
CommentWhere has everyone gone? I just wanted to add that along with my low-oxalate diet, I amtrying the anti yeast or candida diet and now I am convinced that that is the route of theproblem. I have eliminated all sugar and dairy, except for eggs and american cheese (nottoo much cheese) which do not seem to bother me so much. Also, the melon that I wassupposed to be able to eat has been bothersome. Very high in sugar and I was eating it onan empty stomach. The book says it is ok to eat watermelon, but wait 30-60 minutes after ameal. I find that is okay for me. I guess it is all in timing. Also, don't go for the agedcheeses! Use lemon or lime juices for zing to veggies and fish, etc. Those are okay toconsume (avoid the peel and rind). Butter is okay if it is minimal. I have an anti candidabook, which says Arrowhead Mills brown rice flour is okay to use and vegetable glycerine(Starwest Botanicals) in place of sugar in recipes. I tried that yesterday after orderingthe glycerine on the web for pancakes and it was not bad at all. Of course, I willprobably not make them everyday just to be sure. The flour I get at Wild Oats. The bookhas some great recipes for those who believe they have atypical yeast that does not showup on the lab tests. I cannot tell you how much I have improved over the last 2 weeks. Ihave still not found the right dosage with the thyroid meds, so I believe it is due mostlyto the diet. Just thought I would share my last week close to pain free. Regards, laurel
CommentI've been surfing the web, and check this out....
CommentThis is for Holly who posted on June 5 who asked about magnet therapy in vulvodynia. Ithought it was all a bit hippy but having read a lot on the net about the use of magnetsin pain I am convinced there is something to it. And since I have started using them formyself over the past fortnight I can honestly say I think that is why I've recentlymanaged to have sex with my husband for the first time in ages! Okay, so you may feel a bit daft with a magnet pinned inside your knickers...! I alsohave a magnetic bracelet which I have been wearing every day. Some may say it'spyschosomatic, but if it works, who cares?! If you are interested in looking into magnets further can I give you three bits of infowhich might fire your interest. One is this piece of research from Nashville - ************** Static magnetic fieldtherapy for pain in the abdomen and genitals. Holcomb RR, Worthington WB, McCullough BA, McLean MJ. Department of Neurology, Vanderbilt University Medical Center, Nashville, Tennessee37212, USA. Two adolescents with debilitating, medication-resistant, chronic pain of the low backand abdomen with intermittent pain of the genitalia were diagnosed with intervertebraldisk disease at spinal cord levels that correlated with their signs. Both patients hadundergone multiple evaluations by physicians of different specialties and both underwentappendectomy without relief of their pain. The history of the onset of pain was importantin determining the affected levels. The pain of both individuals was mimicked andlocalized by percussion of the vertebral spines at the level of disk protrusion. Thismaneuver and careful review of the history were important in making the correct diagnosisin each case. In both patients, treatment with novel magnetic devices provided rapidrelief that was sustained for more than 2 years. These cases highlight the need forcareful evaluation and correct diagnosis of abdominal and genital pain in young patientsto avoid costly and unnecessary medical intervention and the stigma of painful debility.********** Interesting on two levels I thought. One is that the magnets can heal pain in thegenital area but also it touches on the subject discussed on these pages about thenerves/pudenal nerve/old injuries being involved in vulvodynia. The second is on this site - www.medicinehouse.com/magneticcenter.html#Supplies. They mention only around 15 types of pain which magnets can be used for but two areinterstitial cystitis and vulvodynia. So rare that people even know what they are! The third site you may want to look at is - www.tnp.com/therapy.asp?ID=1. It also hassome very interesting info about the use of magnets for pain. I have been using a little one for the past couple of weeks and the inflammation I havehad seems to be going down a little. I am going to buy a larger one which is said to begood for penetrating deep into the tissues. The company I am going to buy from says youuse it for two hours a day max. If you want to try magnets, then there are few health warnings attached - don't usethem if you are pregnant or have a pacemaker.
CommentGood advice from Jennifer. To Beth: thanks for the compliment there are times my wifewould disagree. I may not be a prize but I do love her and intend on staying put.I wantedto mention that several days ago my wife was irritated and seemed to be getting a yeastinfection, the clumps of discharge. I asked her to take the probiotics for a few days tosee what would happen. Now four days later her discharge looks milky white almost exactlythe same as when she was using the boric acid suppositories. I wish she would go in for aproper check of what this is. I wonder if things are getting better or if thelactobacillis is too much?
CommentHello Everyone! Laurel, I'm still here. I'm glad to hear you are doing good. I hopethat the honeymoon was wonderful. I just got back about a week ago. I haven't had any goodnews lately, and I'm so tired of being negative. The next thing that my doctor wants me totry is biofeedback. Has anyone had any success with this? Please message back or email me. How's it going Lynn? I hope you are doing okay. I'll talk to you all later.
CommentDear Dr Glazer, sorry if we've been using this Guest Book in the wrong way. I havetried to use the email list and other chatrooms. Maybe I am just dumb but I can't figurethem out and the system won't let me link my email address. I realise these Guest Booksclog up your server. Perhaps the old ones could be taken off? Just a thought. Thank youfor your ongoing work and concern in this area.
CommentI'm currently trying to figure out if I have vulvodynia. I've been to several doctorsalready and they are running out of answers. The waiting is driving me crazy because Iwant some answers. Has anyone been diagnosed with this condition, and then had a baby andhad the condition worsen? Or in general does it worsen over time? It is not painful for meto have sex now, but I'm afraid that it may be in the future. Does everyone with thiscondition have painful sex or perhaps I have something else. My main symptoms are it feelsdry/swollen/almost like a chafing when i'm walking or it feels like I'm getting a yeastinfection. It changes almost daily. The area is red and somewhat tender. I just alwayshave some feeling in that area. Has anyone gotten better with treatment? Does it ever goaway or are the symptoms decreased? Thanks for your help.
CommentI was wondering if anyone ever goes to the chat room to chat? I have been in there manytimes and now one else was there. I was wondering if anyone would be interested in settingup a regular time to chat and share our experiences and possible ideas that might helpsomeone else? I am new to this website and was wondering if anyone could tell me how thee-mail list works as opposed to posting in the guestbook?
CommentHi Stephanie C. Girl, I was so depressed today! I was at work crying because I was in alittle pain again. The Dr. just told me that I had a UTI. So now I'm taking antibiotics.It's the 3rd day since I've been taking them, but I can feel that it's bothering me. Itook Frank's advice and went and bought some probiotic stuff and I'm hoping that helps meto not get a yeast infection. Also my husband is getting upset at me always complainingabout this condition. He says that he loves me and that's why he listens to me talk to himabout it. But he's getting tired of me coplaining. I'm so depressed still! I'm eatingCookies & Cream icecream. I hate this having to watch my diet crap!!!!!!! It's drivingme crazy! I've never tried Biofeedback but I'm thinking about it as well. I've never been in the chat rooms. I tried to a while back but just couldn't getthrough. I haven't tried after that. Does anyone out there lives in Arizona? I want to get as many people with thiscondition together so we can try to bring awareness to it in our state- we can put it onthe news and go from there. If anyone's interested, please let me know
CommentAre there any other sufferers out there with no yeast? I had a comprehensive vaginalprofile/culture (great smokies laboratory test) and it came back w/ Bacteria: Escherichiacoli, gamma haemolytic streptococcus, and staphylococcus aureus; Yeast: No Growth! Mydoctor said she had never seen anyone w/ no yeast growth before. She put me on ahomeopathic protocol including vitamin A & C vaginal suppositories and also aprobiotic (one to insert vaginally and also another probiotic supplement to take orally).This did not elleviate my symptoms (itchy, burning, sometimes crawling feeling, painfulsex, etc.) The next vaginal culture came back w/ Bacteria: gamma haemolytic streptococcus,alpha haemolytic streptococcus, escherichia coli, proteus mirabilis, and lactobacillus;Yeast: No Growth! I do understand that some of these bacteria are good, but in balance w/yeast. On the commentary section of the vaginosis profile, it states that vaginal bacterialinfections are often associated with intestinal bacterial dysbiosis. Failure to normalizefecal flora balance often impedes normalization of vaginal flora. So . . .I took acomprehensive digestive stool analysis (Great Smokies Lab) which came back w/ some normalbacterial flora, some imbalanced bacterial flora, a pathogen called Bacilllus cereus (atransitory germ associated w/ food poisening) and very small amounts of yeast (not Candidaalbicans). I'm thinking maybe it's lactobacillosis? I am so confused. I have my first appointment with Dr. Anita Blanchard, vulvularspecialist, @ the Univeristy of Chicago next month. I was pretty excited to see that UIChas done research on bacterial vaginosis & lactobacillus viruses. Thanks Jennifer forposting that web address! Hopefully I'll get some answers. Thanks for listening.
CommentGlad to see a new guestbook. Problem was I was still on the 16th! A message for Lynn.Please try the anti yeast diet. I fear that you will have pain from the cookies and creamand don't want to see you suffer. I know it is hard to follow all of these strict diets,but the fact of the matter is that we do not have that choice. And yes it is very hard tosee everyone around me eating whatever they want, but you will never get better if you eatchocolate and God knows what! Please don't give up. I am confident that all of us togetherwill eventually find a cure. Get rid of the sugar too! You have come so far with thesurgery and you can make thast recovery! Hi Steph! I have included my email address ifanyone needs questions answered or needs some moral support. For Stephanie C, you shouldtell your gyn that the estrace cream is to be used topically and that may help you get theprescription you need. That is what I did. If that does not work, I find that theingredients in the Vanicream are very close to that of the estrace. In fact, I have hadbetter luck with the vanicream. Your pharmacist can order it if they do not have it instock. The estrace contains estrogen I believe, but I have found that it does not help norhurt me. Talk soon, laurel
CommentThis is for Sabrina. The symptoms you were talking about are basically the samesymptoms I've had for the last 20 yrs and more so for the last 11yrs. I to can have sex attimes where it doesn't bother me to much, but low and behold that one time that we do havesex and I'm in pain with burning and itching and swelling again. Sometimes I think it's myown secretions, sometimes my husbands semen, or maybe just from the friction, who knows? Ijust recently had a complete hysterectomy with bladder suspension surgery. I had both aprolapsed uterus and bladder. Also had cysts on both ovaries and one on my uterus. Luckilythe pathology reports came back ok. I had urine leakage and it was aggrivating myvestibulitis. I just had the surgery 3 wks ago, so hopefully this will help some of myproblems with the vestibulitis. I'm not fooling myself into thinking this will cure myvestibulitis, but I hope it will help some of the symptoms. I already notice I'm nothaving as much burning and not as much pressure form the swollen vulva glands, since Idon't have my uterus sticking about an inch outside my vagina. I am now on hormonereplacement therepy, since I know longer have ovaries. I notice I'm not as dry as I wasbefore and that seems to help with some of the irritation. On my own I am using Bag Balmon my vulva. You can buy it at Walmart in the pet supply dept. It's in a green square can.It seems to help with the irritation. It was origanally made for use on dairy cows uddersor teats. My husband kind of brought this product to my attention. Alot of people use itfor excema and other skin irritations. I have posted in the past. My 1st posting is aroundJuly 4, 2000, if you want to read it, it goes more into the problems I've had over theyears and some of the different treatments I've had. Will post later on to let everyoneknow how the hysterectomy went. It has now been 3 wks since the surgery and I am up andaround and doing real well. Ready to go back to work. Suppose to be off 4 to 6 wks. Seethe dr next wk for my post-op ck. Take care everyone and hope we all have better and painfree days ahead. Chris
CommentThanks Laraul. I just feel so bad you know? I'm getting frustrated with this wholething! I want you all to know that once I make it to the big times and become a celebrity,I'm going to let the whole world know about our conditions and bring awareness to it. Are anyone of you part of the vulva pain foundation? I have a question- What are theydoing to raise money and bring awareness to the public about this condition? And why iseveryone so HUSH HUSH about it? It's out there and it's time that we all let people knowwhat's going on with us women! I'm going to make copies of a flyer and post it up everwhere go. The flyer's going tosay " VULVODYNIA/ VESTIBULITIS"- IT'S TIME FOR WOMAN TO STOP HURTING AND FOR USTO FIND A CURE! WWW.VULVODYNIA.COM. That's what I'm going to do this weekend. Everywhere Igo, I will post on buildings and walls and all that. Does anyone else have anysuggestions? Please let me know.
CommentHas anyone had surgery and found that the vestibulitis came back?
CommentHi Lynn. I just wanted to urge you to join the VP Foundation. They are a great sourceof info and support. Joanne who is founder and runs the foundation is extremely busy, butshe still finds the time to contact me personally (as do I) to say hello or let me knowwhat is going on. They are doing the best that they can as far as funding is concerned,and no one wants to get the word out about vulvodynia or vestibulitis more than she does,but it is vey hard. She urges people to order the cookbook and she and other members walkfor the human race, to raise money and awareness. I donate for that and periodically sendmoney just because. Still, it is difficult to get the word out, but I feel confident inthe next few years we will see a lot more on the subject, but have to sit tight for thetime being. I know that she has solicited companies to support the cause as well. Byjoining the foundation, you can get all of that info in the newsletter (magazine) as wellas the things she sends out. There are so many members now that it is hard for her to doall of this with the few volunteer workers in the office. And just mailing out all of theissues is an expense in itself. Joanne sent some a letter requesting that we writesomething on behalf of the foundation to get a grant. Hopefully that will be approved.Lynn, I think that you would be fabulous in giving her ideas and spreading the word tothose out there (especially those who have no web access) and have no idea what the heckis causing their suffering. Please join if you have not, I mean all of you that read thesecomments. They truly are a wonderful organization and there is no way I would be at thepoint I am at today had it not been for them and Dr Solomons and his wife Ruth. Sorry togo and on. And a very HAPPY 70th BIRTHDAY to Dr Solomons! regards, laurel
CommentHello everybody. Lynn, I know it is very difficult dealing with this. My husbandlistens to me, but I don't think he understands me. When you start a conversation withyour mate and it ends up with vulvodynia. I hate that! We are all here to listen to eachother, no matter what. Try to hang in there with the diet. You have come too far to turnback now! Do you every post your email address? I tuly understand that you want to shoutthis out all over the world. I DO TOO! Laurel has really said some very comforting thingssince I have been on this website. We are all in this together. I may be in a conferencein Phoenix in a couple of months so post your email address so that I can tell you more.Stay STRONG!
CommentThanks Laurel, I've been wanting to join but I never got around to filling out allthose papers. But I will do that eventually and then I'll let you know when I'm in.Thanks!
CommentDid anyone else read the Vulvodynia article in today's NY Daily News? It's available toread online. Also, on June 13th, the Chicago tribune will be running an article onVulvodynia in their women's section. That article will also be available online. At leastVulvodynia is starting to be acknowledged as a real disorder.
CommentLynn, There use to be a support group in Gilbert, Arizona for vulvar pain thru the VPFoundation. I think you said you live in Phoenix I might be wrong about that sorry if Iam. Lauren is right maybe if you join the Foundation they will let you know where thesupport group is. It is nice to have support and be able to talk to women with thiscondition. So good luck on starting one or joining one....... Mary
CommentThe NY Daily News article was pretty good. Here it is for those interested
CommentDoes anyone else suffer with a rash on their inner thighs with their vulvodynia? I havehad mine virtually constantly since my vulvodynia started. I think it's probably yeastinfection but cannot find anything which will get rid of it. Siometimes it's just a fewspots, other times (like today) it is hundreds of sore spots and angry red areas. I'm guessing it's yeast because it started when I had had the undiagnosed thrush fortwo weeks which then turned into vulvodynia. Please help! Have tried creams, tea tree oil,Hibiscrub, oils, powder etc.
CommentYou are welcome Lynn! Thanks for the article Jennifer, and for the kind words StephanieC. As for kate in the uk, yes sounds as if you have a nasty yeast. You know each time youget a yeast infection, it worsens if the yeast has not been eradicated from the previoustimes, and voila, vulvodynia over time. So kate, I suggest you go on the strict yeastdiet. There are many books available on the subject. But, along with that, you need to beprescribed either Diflucan or Nystatin (which some have had a problem with). Many seeresults in a month, depending on the degree of severity. Please try, but the meds alonewon't help if the diet is not adhered to properly. Then, you will be able to wean foodsback into the diet, provided they are allowed between the low oxalate and the yeast diets.You have your work cut out for you, but it can be done if you have the will. I cannot tellyou how much improvement I am seeing by following all of these measures. By the way,although meats are allowed on both diets (except for ground beef on the yeast), I findthat ground beef in general as well as chicken irritate me unless consumed minimally. I amtelling you, hamburger just sets me off! The chicken is a little less irritating and Icannot figure that one out, perhaps the skin or what is being fed to the animal, organicmeat or not. Thought I'd share. Take care girls and guys-laurel
CommentThanks Jennifer for posting that web address on the New Times article. I just read itand I feel so much better knowing that somone actually spoke the truth about ourcondition. I've made a print out of that article and I'm going to make lots and lots ofcopies and distrubute them out to public places and try to bring as much awareness andsupport for all of us. As Stephani c says, "We are all in this together" and Iwant to help out any way I can.
CommentJust to give credit where credit is due....thank you LS for letting us know there wasan article printed by the Daily News in the first place.
CommentKate, if it is a yeast infection inside your thighs, then I have somesuggestions...after bathing dry the area well by patting with a towel, and then use a blowdryer on cool to completely dry the area. Some people suggest corn starch powder, in placeof talc powder to keep the area dry during the day. Also, do not where skirts/dresses.This is just something I have come up with myself, no one ever told me this, but unlessyou are very thin, and keep your legs parted when you sit (somehow I doubt that) yourthighs are constantly touching getting hot and moist, so cotton trousers, and no pantyhose(but panties are fine) make sense to me. Having said all of that, I am pretty sure they can try to culture your infection, butyou need to be off of antifungals for at least two weeks to get accurate cultures (I thinkI would go to a dermatologist for that). I think Sporonox for a week is probably your bestbet, along with Nystatin cream to apply topically. Not sure if Sporonox is called the samein the UK. It is a Janssen product http://www.janssen.com/which is approved for toe nail fungus, but testing is being conducted for vaginalinfection, and other uses (of course it is already being prescribed for vaginal infection.And it is very possible that in the UK it is already approved for that). It is thought tohave a much broader spectrum than diflucan. There is a black box warning, so be sure thatyou are not taking any of the meds that are contraindicated with this drug. I know manypeople that have taken this drug, and had no side effect at all, including myself. Good Luck, Jennifer
CommentJennifer, thanks for the acknowledgement. I've also heard that the Chicago Tribune andthe Chicago Sun Times will each have an article on Vulvodynia sometime in the upcomingweek. It's about time that things are starting to happen for us..
CommentHere's a press release that I just read. www.nva.org/press3.htm.
CommentYou can learn more about the media coverage of Vulvodynia by going towww.vulvarhealth.org or www.vulvodyniasupport.com They both have information on whatpapers are printing articles. The women who created these sites have compiled a jointpress release and been in contact with many newspapers, websites and television stations.I also want to add that Dr Koop has added some information to his site. Read it at
CommentI've finally been diagnosed with something...vulvodynia and vulvar vestibulitis. Forthe past two year's doctors have been telling me that nothing is wrong with me and that Ithink about my vagina too much. At least now I don't think I'm crazy, but now I don'treally know what to do. I've been put on anti depressants and I have a numbing cream, butI want to get to the root of the problem and correct the problem. I'm twenty years old andI've been depriving my poor boyfriend of sex for a year and a half. Any suggestions??Natalie (Ontario Canada)
CommentHey everyone, I tried to submit this earlyer but the list serve was bussy being updated. But I sawthat I actually saved it so I am sending it again. I have been resting up so I haven’t been on to see whets new in a while.From whatI see I have new reasons to not like talk show hosts. It seems to me that they rarely talkabout anything too serious anyways. To Lynn, I am sorry if I confused you or anyone about my religious rant post:). I am aChristian myself and I actually welcome anyone’s prayers or support. However I havenoticed that not everyone else feels the way you and I do. I thank you very much for yourprayers and for your husband’s prayers. I find it comforting to have that supportduring times like this. When I typed that I had just read a bunch of posts from muchearlier (earlier then your post too) where people where upset that people were sayingthings like blessings or I will keep you in your prayers. I was saying that when peoplesay these things they are wishing well, and that it is not meant to be offensive inanyway. I was also saying that there are so many other things out there worth getting madabout that we should let things like this pass. In other words if you don’t like itand it is not meant as an attack ignore it. There are as many people on this list whoappreciate that kind of support, as there are who dint. Maybe I wasn’t very clearwhen I wrote that. I typed it immediately after I read these things and I may have stillbeen a little irked:) I am thankful for the support everyone has given me. Jillian, I have been tested for Herpes, Syphilis, Gonorrhea, HPV, and HIV and justabout everything else under the sun. I tested negative for everything. I have had only onesexual partner and that is the man I married (so I would hope I would be clean or someonewould be in trouble :) ). As for my recovery, I think I am doing pretty well. I did break a couple of stitchesthe other day, but I called the office and the nurse there didn’t think there wouldbe any problem healing normally still. My biggest problem has been constipation. I have already had to use a fleet once. I wasready to use one again today even though I am taking 6 stool softeners a day. Ididn’t have to though. Just after breakfast today I began having really bad abdominalgas pains. They got worse while I was using the bathroom. I was able to make a bowelmovement, and the stools were not to hard (I hope I am not being to graphic), I was justhaving a hard time of it. The gas pain was incredible! I haven’t had that sort ofproblem with my IBS in a year. I am sure it is the Morphine from when I was in thehospital slowing down my colon even more. They warned me that could happen. But WOW thepain. The last time I had that happen last year, I had to have my husband stay home and belate for work to make sure it wasn’t my appendix or something. Fortunately I stillhad some Dicyclomene left that the doctor prescribed for my IBS last time I was havingthat kind of pain. I almost passed out! I was sweating cold, and my muscles just felt soweak. I really hope that crap isn’t coming back and that it is just the narcotics.Otherwise I am recovering pretty well. Josh(my husband) whent out and got me all sorts of crafts to keep me occupied that Ican do lying down in bed or on the couch. He dosent want me breaking any more stitches.Josh has been an absolutly wonderful husband. I am truly blessed. I had my post op on tuesday and the doctor said everything is looking great. She wantsto see me again in 3 weeks to determain my exact back to work date. She told me that shemight want me to stay home 2 weeks more because I stand up all day at work and because myglands were 4 inches deep, and I had alot of scar tissue. She told me that the LS she found in early stages shouldnt need to be treated untillmenopause if I dont breast feed if I have a baby. She also told me that because of how much scar tissue and how deep my glands were andall she wants me to deliver babys by cesarean. She told me she would type up a letter formy OB when I decide to get pregnate. I had some of the stitches removed because they were not disolving as quick as my bodywould like. I must say it feels much better to have those out. I'm now alowed to go out and visit as long as I stay reclined (still cant sit), andlimit it to 2 hours max. I'm going crazy stuck inside. Christina Bunny Thanks everyone for your support Christina
CommentHi Christina. I am so so happy to hear from you. I know I don't know you personally,but you're always in my thoughts because you went through what I've gone through-makingthe hard decision to have the surgery or not and then to have it and deal with all therestrictions, that is just too much! So I think of you and wonder how you're doing and ifyou feel better or not. Now that I know that you're doing fine, that makes me feel better.I hope I don't upset you or offend you in anyway. But I'd feel guilty If I allowed you tothank me for praying for you. I don't pray Christine. I don't feel good about prayingbecause It seems that whenever I pray, things will end up being worse. I stopped prayingmonths and months ago. But I was saying that I have my husband pray for you. He prays 5times a day and I asked him to pray for you each time. And he does. I don't believe thatpraying works for me. But to others (like my husband) praying is a very powerful tool.Take care and be sure to post often so you can let us know how you're feeling. Thank you to the girl whom originally informed us about the article in the paper. I'msorry I don't remember your name. And since I'm thanking people, I thank Laurel, Stephanieand all the rest of you who offer your advice and support. You all teach me a lot aboutour conditions and I really do appreciate everyone's input.
CommentI have suffered from VV for over 6 yyears now and while I'm able to pretty much keepthe symptoms under control,the price I pay for doing causes more mental anguish than I canbear.Then for the tv execs at HBO to have the nerve to portray the condition as they didreally gets me peeved. If any of you get the chance you should go to the women's healthboard on MSN and read the harsh comments left there by women in response to a post left bya fellow VV sufferer. It will shock and sadden you.I didn't leave a message in response tothem,but now that I'm thinking about it, I am about to pop back over there and do so.
CommentTo Rose: I have just posted a response at MSN. I mentioned ignorance and indifferencein the attitude of some people. Until more people understand the illness that is the kindof response you will see. They either cannot or do not wish to educate themselves onVulvodynia, all they see is their favorite show under attack. Ignorance is bliss,obviously they are insensitive and self centered. The Word is getting out on Vulvodynia,as it is spoken more and more it will be better understood. Collect your thoughts and posta response or post something to inform . Good luck .
Commenthello. i have similar symptoms and stories to many of you: i'm 32 and i've had thisstuff for about 8 years. i took desipramine for several months and then went off it andcontinued to be pain-free for about a year. thensuddenly the pain came back. this wasabout 2 months ago, and the desipramine is not working this time. ( i should mention thatmy live-in boyfriend and i broke up also about 2 months ago, and i was very sad andanxious.) here's the other thing: one doctor told me my vaginal pH was too low (3.5, andit should be 4.0). then i read on the internet about cytolytic vaginosis. i decided to trybaking soda baths and they helped A LOT, but only for about a day. so i tried douchingwith baking soda a couple of times. now i just feel really raw down there. has anyone hadany experiences similar to this? it is making me really sad. i was planning to go tomexico in august to teach esl, and stay there for a while. but i'm afraid to go if i'mstill in pain....
CommentHas anyone ever heard of a relationship between vulvar vestibulitis and blood in theurine? I have had a variety of tests and ultrasounds to determine the cause for blood inmy urine, but everything has come up negative. My doctor sees no sign of infection and I'mstarting to think it's my vestibulitis. Thank you.
CommentTO JILL: Yes, I've had blood in my urine from Vestibulitis. It wasn't visible to me,but my Gyn. saw it in my urine test. I then went to my Urologist who checked my urineagain, and this time there was no sign of blood. It all correlated with my burning pain.Hope this helps. Sue
CommentHi Frank, could you tell me what is that web address for MSN? I'd like to check outwhat was commented about the Sex and the City. Thank you very much. Also I just want youto know that I'm doing fine. Those Probiotics you suggested must be helping me because I'mnot feeling any worse or anything. I'm doing just fine(as long as I stay away from the badfoods)
CommentTo Lynn: I'm very glad the probiotics are helping, remember what Jennifer said and justdon't overdo them. I just typed in msn.com and the site came up, then I chose the Womentopic and then boards and Womens Health. I eventually got there. The comments on Sex andthe City and Vulvodynia are around page six I think. I posted there and at one in themorning last night I posted something on the most current page one. I hope you continue tofeel well, take care.
CommentI've posted a couple of times before here, but not for quite awhile. My 27 year olddaughter is the sufferer and has had vulvodynia since she was 20. It disappeared for threeyears in the middle there, only to reappear a year and half ago simultaneous to a new sexpartner. We live in California, but she went to see Dr. Toth at the end of April. He foundan overgrowth of lactobacillus -- she'd taken some orally on advice of a local doctor totry to control severe vaginal strep -- and also Chlamydia trachomatis. I wanted to postthis primarily because she had been tested for chlamydia on many other occasions and hadalways been told she didn't have it. Her partner had taken all the usual tests prior tostarting sexual relations and he also came up negative. So it's scary to me to think thatone or both of them have it, after all. She will finish oral antibiotic treatments on June19th. Has finished a course of Zithromax and is now on Augmentin. She's still having updays and down -- at present the results are inconclusive. One other thing I wanted to add-- she's a grad student and the doctors in student health have told her on numerousoccasions that they are seeing SO much of this these days. There could be lots of reasonsof course, including just greater awareness, but this could also support the STD theory.
CommentI have extreme burning during sex and left very sore after, also it hurts insertingtampons. Any suggestions, as it's too painful to have sex!!
CommentLook at this guys. Lauren sent this out to her mailing list I went ahead and just copy pasted for everyone below, so you don't need to actually getonto the site.. WESTPORT, CT (Reuters Health) Jun 04 - Researchers from Vanderbilt University, inNashville, Tennessee, have evidence of a potential link between Chlamydia pneumoniae andinterstitial cystitis. In a presentation at the American Urological Association meeting in Anaheim,California, Dr. Jenny J. Franke reported that 14 of 17, or 82%, of patients withbiopsy-confirmed interstitial cystitis had tissue cultures positive for C. pneumoniae. Incontrast, only 1 of 6, or 16%, of control patients without interstitial cystitis werepositive for C. pneumoniae. "Our institution has investigated the association of C. pneumoniae andinterstitial cystitis using two separate techniques. Previously we used polymerase chainreaction (PCR) and our current study used cell culture. Both techniques have shown astatistically significant correlation between interstitial cystitis and urinary C.pneumoniae infection," Dr. Franke said in an interview with Reuters Health. This implies that C. pneumoniae may be involved in the pathogenesis of interstitialcystitis in certain patients, the researcher said. "A patient's geneticsusceptibility and C. pneumoniae strain virulence may play important roles and requirefurther investigation." She cautioned that the findings need to be validated by similar studies at otherinstitutions, with evaluations performed following response to appropriate antimicrobialtherapy. I was suprised to see the post just before this saying that Toth found Chlamydia in asecond patient, what I mean to say is I was aware he had found it, but shocked at thetiming of the post, and me coming upon this article. Just in case any skeptics are thinking that Toth probably always finds Chlamydia, thatis not the case at all. I know 6 people that have gone to Toth, and two have grownChlamydia in cultures he has taken.
CommentLynn: I'm sorry I missunderstood you, thank your husband for me for keeping me in hisprayers:) Its good to find other people out there that understand what I am going through.My friends and family are very supportive, but they dont really know what I am goingthrough. Diana:: Thank you fro posting those web sites that will tell us about vv articals in thefuture. That is very informative. Jill: I have vestibulitis, and I have had blood found in my urine during a UTI. My doctoralso diagnosed me with Atrophic Vaginitis. Blood found in the urine is a symptom foundwith that problem. Hope that helps. Rose: Thanks for mentioning the MSN board. I will be sure to log on to that and express myoppinion. Christina Bunny
CommentHi Frank, I just want you to know that I've just spent the last 2 hours reading thosepost on MSN. I've read your post and others and thank you for REPRESENTING for all of uswomen. I've made about 6-10 post so you can go read them if you'de like. I'll talk toevery one later. Christine, I forgot to tell you that after I had my surgery, I was always constipated!But I eventually got over it about 3 months later. But now I've been constipated again forthe past 2 weeks.
CommentTo Lynn: I read your post and you sure didn't hold back. My wife read mine earlier andshe read a little of the one Rose wrote but it got to her and she started to cry. We havehad such a strong sexual relationship before this started and it is a lose. I think whenpeople grow old together there is a suttle change in lovemaking. This is very sudden anddepressing. I can accept as fact that we may never have the physical part like before. Imiss it but I have memories and hope for the best. I think my wife feels less of a Womanbecause she cannot make love like she once did. She knows I have a strong sex drive and Ithink that adds to her feelings. Hey sorry to get so deep with my thoughts, we are goingthrough some tough times.
Commentdoes anyone else's vulvodynia feel like this -- sort of like you've been slapped inthat area; not exactly a pain or a burning and certainly not an itching but more of atingling but not exactly a tingling....i would love to hear from somebody who has the sameexperience, maybe we could compare notes and come up with some answers...
CommentJennifer -- any idea what the difference between c. pneumonae and c. trachomatis is?
CommentOkay, I too, am sorry that I have had to use this website to respond after difficultyin getting in the chat room. Perhaps my browser cannot support it. But I just wanted tosay that due to the thyroid and the fibromyalgia, I have had constipation for years. Notonly is it bloating, but painful as well to the v.v. And this is my theory. My pain USEDto be the entire vulva. Eventually through all of my diets like the ow oxalate, it isresigned to the left side, unless the flare up is so severe it would be both (but that isnot often) sides. My pain is largely up inside of the vulva, so it is not visible to theeye. Now, it may take me up to 2 weeks to move my bowels, and what a terrible feeling thatalone is. Thus, the stool inside of me (obviously the left side) is building up andpushing on something in there. Ergo, Pain! I notice a relief in pain almost immediatelyafter going to the bathroom. And the stools are hard (sorry to be graphic), so it ispossible that just by going I am injuring the tissue inside. I have been using thevanicream in the vagina and the rectum, and it does help. I have just started to takemineral oil orally for the constipation, that is until the meds clear up the IBS. So, ifthere are some of you out there who can make that same connection, please let me know.Afetr feeling well for a couple of weeks, I have had some pain the past 3 days. I know assoon as I can get myself to go (and it is extremely difficult), the pain and swellinginside will subside by the next day. But, eventually the cycle wil start over again. Thatis just a theory for those who have pain up in their left side.
CommentJennifer, I wanted to know if I could trouble you into making a list for me here that Ican print out that will show the various tests that I should be asking my OBGYN to haveperformed on me by the lab when I go to see him for my annual. Like I said before, he sawall kinds of flora a few years back, but tests came back negative. But, I know there issome kind of yeast in there and I want to know exactly what it is I am dealing with. Andif you could help, I would appreciate that so much! And I remembered that when my son wasborn 5 years ago, he had thrush about a week later, and I recall the nurse saying it was ayeast carried by me that he got during childbirth. But I have not had a yeast infection inabout 10 years, so I was definitely not treated for one at that time. But, I had spent agood part of my teen years on antibiotics for a nasty strep infection that took me yearsto get rid of because I built up immunity to all the anti's. Then, I had a bacterialinfection in my early 20's that set this whole thing off chronically. So, I don't doubtthere is something in the body that is there and does not want to leave. Any info at allthat you can provide will be most helpful. I think my gyn will be educated by this too, soit could help others! Thank you in advance, Laurel
CommentExcellent question Karen. I was thinking late last night that I probably made it soundlike these Chlamydia's were the same thing, and they are not. Bacterias are such a weirdthing. C. trachomotis is the bacteria that is consistantly talked about as Sexuallytransmitted, and many times leads to PID and infertility. C. Pnemonia has recently beenimplicated in heart disease (the more you let me talk about infection, the more you willsee that doctors should not be dismissing an infectious theory for any disease out ofhand) I found this website, and I only read the first paragraph, but it seems to explainthe heart attack connection... www.heartinfo.org/news98/clmydpneu120898.htm. They are nowtreating heart attack patients with zithromax in the hospitals, especially when they areyoung, and seem to not have typical risk factors. The discovery of the C. Pneymoni in the Urinary Tract is very interesting to me, onlybecause I like the idea that scientists are looking at bacterial infection more and moreas a possible source of these problems. I have said before that I and a couple of doctorsthat I know feel it is possible that sexual transmission of bacterial disease could be astarting place for other, what seems unrelated diseases (scary, right) remembering thatthis is just theory, none of that is documented anywhere. I think that this would explaina lot why certain diseases are on the increase. If they are contagious and not beingtreated, eventually the numbers would go up in alarming rates, but this is a tangent thatI probably should not go down. Anyway, this leads into Laurel's question about what tests to have ordred at you nestGYN appointment. The truth is you need a lab that can grow anaerobes, aerobes, yeast,Chlamydia and Ghonnerrea and micoplasma and then have them report everything that grows,and then I can send the result to Toth if you want for an opinion, but I think you willhave a lot of trouble finding a good lab. Where do you live Lauren? If your culturesusually go to Labcorp or Smithkline, they will just report back normal flora, they won'teven report back what did grew, so you can at least have that interpreted by Toth!Actually, it is worth it to have your doctor do the micoplasma/ureaplasma urealyticumculture, she will need to find out the labs that do this, and have it sent there, minecame back positive from one of these specializes lab, so I trust it a little more. Thereis a good chance she already tested you for Chlamydia and Gonerrhea, but it is worth itfor me to say here, that that is a specially ordered test that is NOT done in normalcultures at your yearly appointment. It needs a special type of medium to grow. Lauren Idon't think I was very clear, because I don't have much faith in the cultures done bycommercial labs, and I don't want you to pay for a bunch of tests that will not result inanything. Of the stuff I mentioned above...mycoplasma, gonnerrhea, chlamydia, anaerobesand yeast, what have you already been tested for?
CommentLaurel, I too notice that my symptoms are much worse when I am constipated, and unfortunately,since I am on so many meds, it happens frequently. I have been using Doxidan for a coupleof months. In the beginning it helped immensely, but now less so. I think I will switch tomineral oil since it must be better for the body than even more meds. it seems naturalthat if one is constipated, it will put harmful pressure/tension on the pelvic floormuscles and surrounding tissue. Pain free days to us all!!!
CommentForgot to mention that constipation can be a side effect of many meds. It is definetlya side effect of narcotics, and especially for people that just had surgery...anesthesiaslows down the body systems and it can take a while for the intestine to wake back up. Ithink I have mentioned before that I started having constipation in my 7th year ifvulvodynia, along with colon pain, and when I finally had a laproscopy done they foundtons of adhesions (from infection) and on my left side the colon was adhered to my ovary.Now that it has been separated, my digestives problems are 95% resolved. It is also worthmentioning that if you have had surgery in the past, you can develop adhesions from thesurgery that can leave your digestive system screwed up too.
CommentLaurel, I thought I would type it out a little clearer...I am concerned with... Mycoplasma/Ureaplasma Urealyticum Chlamydia Yeast But, in general I beleive that standard treatments for these will not cure vulvodynia.The thing is if you have an infection of one of these things, you at least have to havethe standard treatment, and many people are not even getting these diagnosed. Lastly, I would want to know the anaerobes and aerobes, but I do not think that anystandard lab will give this to you, they will just come back with normal flora. When I was in my late teens I had strep throat 4 times. They wanted to take my tonsilsout. They called it four times, but thank goodness I insisted on seeing another doctor,and Infectious Disease doctor, and he concluded that I was not getting enough of a strongenough med, and he gave me a new script of antibiotics and I have never had strep throatagain. I never had a minute of vaginal discomfort or yeast infection during these monthsof antibiotics, and I had sex almost every day! I am convinced something significantentered my body, something pathogenic to cause such a screw up in my vagina. I tend to notthink it was simply that I became unbalanced.
CommentThanks for the info Jennifer. This whole thing is not only frustrating, but socomplicated! I am in Massachusetts. I am so close to NH, that my doc is in Salem, NH. Ihave been thinking about calling Dr Stewart in Boston, and I know that must be somewaiting list. I will do it though tomorrow, but I do not know what she will be able to dofor me. I have managed to get better educating myself since few docs can offer any newinfo! I believe the lab is Quest Diagnostics. They are the ones who said my 3 thyroidtests were negative, but my new doc found it on lab tests in the Boston area, so thattells you the faith I have in them! I have been tested for chlamydia (i had it in theearly 90's) but that was supposedly negative. I am not exactly sure what I was tested for,but the bacterial infection I had that I feel brought it on wasn't gonnorhea, but I thinkthe name had a similarity. I do have a mild form of HPV, and those are way up inside. Iguess there are only a few (but there nonetheless). You know in the late 80's my behaviorwas less than desirable, so I really can blame myself for a lot of the infections. Here Iam 30, married, and alive thank God. But, this is one of the worst things a woman has tobear. It pains me to think that people are getting this each and everyday, all races,ages, and they have no idea what a long haul it will be. Thank our supportive spouses forsticking around and helping us through the loneliness and sad times. Jennifer, do youstill have all the symptoms? Or do you consider yourself near to cured? How long have youhad this? You seem to know your stuff. Sounds like Dr Toth takes the time to sit and talkwith you. Gives me the strength to call Dr Stewart. I hope that I can get these labsapproved? Would Dr Toth really look at them? Thanks a million for the reply. I will takethis info to my gyn and see if he will do it. If not, I will hound my primary. I am sickof being sick. Lynn is right. Time to take action, and I have gone from shy to persistent(nice way of saying bitchy) with doctors and will continue to do so until this can beeradicated for all of us. I am thankful for all of the help and ideas that evryone on thissite has. And for Frank, I am praying for your family. I hope things look up soon. Talksoon, Laurel
CommentLaurel, so did I hear you right? You had an STD and then all of this vulva pain crapbegan? Don't blame yourself...thank goodness we are all alive!! I lost many friends toAIDS. Nothing to be ashamed of, I know you have heard me rant about how I cannot stand theprude uptight group of people that cannot bear to think it might be an infection. Havingsaid that I hope if I have a daughter ever, that she has three types of vibrators anddoesn't let a man near her until he has been tested for everything by Toth, and then whenshe is married they have my permission (just kidding, sort of). You know the gaypopulation embraced each other, and came together when they fell sick, the heterosexualpopulation points fingers, and tries to feel superior to the the next guy. There but forthe grace of God go I...plenty of people were just lucky, not careful or prudent! So, we have to know what STD you had? And, I am curious to know what your doctor feelsabout my list of tests. Is your doc a GYN? There is a possibility that he won't even knowwhat Mycoplasma's are, which makes me sick! And, Laurel don't waste your time fighting ifhe is ignorant, go to a doctor that knows already. Well, in the end I will admit that there is no way that I can know what is wrong witheveryone, and I know the infectious theory helped me, but there is no guarantee it willhelp others. Most of the people who went to Toth are finishing up their meds within thenext week or so, so we will start to hear if they are improving once their bodies have hadtime to recover from the medication. This will be important information for everyone.
CommentSorry Laurel...I am 95% better! I no longer have daily pain. My feeling of rawness andless elastic is gone. I do get some irritation/twinges fduring my period, but it is verymild, nothing to talk about. The redness on my vulva is gone also. I can have sex with noproblem, although I usually need a little lubricant just to be safe. I do not feel like Idid before I came down with vulvodynia, but I am amazed at how well I have done after thislast IV. I thought for sure the tissue would have had permanent damage, I had had biopsysaying I had sclerotic cells, and that I had what looked like the beginning stages ofLichens Planis or Lichen Schlerosis, I don't remember which, I would have to look at myrecords. I would bet if I had a culture today it would not show that. By the waySMithKline said I had HPV, and found nothing else!!! I had expensive tests done thatshowed I did not have HPV, and experts at analyzing vulvar tissue told me I had theschlerotic cells, eosinophils and beginnings of the lichens whatever. The labs are crap!This is part of the reason I don't think everyone should go running to have tons of tests.
CommentTo Laurel: Thanks for the good wishes, I think we will be fine. Still this is difficulton a relationship. I agree with Jennifer that the labs are not 100%. Still I would like tohave some testing done concerning my wife. I have had two sex partners in my life and Imarried the second. I'm not complaining or bragging, my wife said I was her only lover andI think there might be more than one cause for similar symptoms. Could be bacterial forsome and genetic or hormonal for others. I hope someday to get an answer to why aftereighteen years of frequent sex together with no problems other than an occassional yeastinfection she starts to get raw areas and the tearing? Maybe I did pass something to mywife from my first sex partner but that would have been many years ago, why would thesymptoms be so severe now? I have thought maybe her immune system is a little weaker .Sure would be nice to have medical experts rule these things one way or the other. Theonly event I recall having a possible impact on this starting is my wife stopping thebirth control pill. Now maybe that has nothing to do with all of her symptoms but it couldbe to blame for some of them. I see no reason to make any judgement on women who aresexually active and get this terrible disease. The same way I don't think God punishedgays by giving them aids. There are diseases that need to be cured plain and simple.Certain sexual practices put us at more risk so education is important. I have twodaughters and I hope they learn to respect their health and understand their bodies.Hopefully they won't have to suffer from Vulvodynia.
CommentThe Chicago Suntimes ran an article regarding vvd and Sex and the City. If you wouldlike to read it go tohttp://www.suntimes.com/output/health/vul11.html
CommentThanks for that article Diane.
CommentFrank, I agree that your wife would have been sick when you started having unprotectedsex, not years later. The only possibility for infection for her, might be during a birthof your children, I don't remember if the vulvodynia started right after a birth? Also,Allison, who posted a couple of weeks ago used to get cuts like your wife, and she seemsto be "cured" with the diagnosis of a pituatory tumour, and medication to helpthat.
CommentJennifer Could i ask -- i went back and read your posts but i don't think you say what treatmentyou did to make you 95% better. thank you!
CommentTo Jennifer: I remember that post her tumor caused symptoms like breast milk to form,an endocrinologist discovered the problem. My wife does not display anything unusual likethat lady, so I don't think there are enough similarities. She had her last pregnancy anddelivery seven and a half years ago and the tearing started one and a half years ago. Shedoes not have the dryness and cracking described by some of the other sufferers. I believeher Gyn is a very learned Doctor but he is stumped and said he had never seen a similarproblem. He was the person who sent us to the expert on Vulvodynia here in Ct. I keepthinking that most doctors are somewhat controlled by the insurance companies to keepcosts down. I just think a Doctor not under such pressure would be a lot more curious asto possible cause and run some tests. I don't expect these folks to be research scientistsbut they could do some thorough blood work to rule out things like hormone imbalance.Certainly diagnostic testing at their disposal could show some clues. Would the Doctortreat his wife or daughter in the same manner? Would he simply say I have examined you andthere is nothing I can do? Or would he run a battery of tests to rule out certain things?I must sound paranoid but I really think cost cutting accounts for their lack of agressiveaction. The H.M.O.s tell them what they can test for, how often to see a patient , whattests they should or should not perform and what drugs to dispense. My daughter wasprescribed a drug for a sinus condition and the H.M.O. did not want to pay for it becauseit was not on their approved list, they wanted the Doctor to substitute something in itsplace. The Doctor told us there was nothing really like it. I think the H.M.O. won out andnow this Doctor no longer prescribes this medicine. Can you imagine that? Rather thanfight to give out what works they give in to the pressure of big business. Sure there areDoctors who would do unnecessary tests from time to time but I think the opposite hasbecome the norm, they are so afraid of spending money things are going undiscovered.
CommentThanks for the info Jennifer. I as well as Amy wanted to know exactly what you weretreated with to get yourself welled. I racked my brain and finally remembered the name ofthe infection was something like gardnarella. After I took Flagyll that was the beginningof the chronic vulvitis. I have never really been red on the vulva, just feels like it is.But inserting the finger just inside, I can feel it is extremely sensitive. The entireleft side. And inside the rectum, the entire left side. The pain may go down the leftbuttock, to the left calf, to the left foot. It really feels like there is a nerve thereas well. Have you heard of such a thing? Possibly the gland? I wish I were close to DrToth, just to see his/her opinion on this. I wanted also to ask you that if I am reallyhaving a setback, it can last days. Then when I am feelin better, the next day, I get thisdischarge that is a very light green. Ni itching, burning, or strong smell, just adischarge after one ot 2 voids and then it is gone. That has been a few years like that.Just sfter flaring up. I asked my gyn and that is the time he tested me. he saw the flora,but the tests all showed negetivity. I think it is a yeast of some sort! Any ideas? Thanksfor all the help! Laurel
CommentHell Dr. Glazer, We have talked before. I have finally found a doctor in my area(Bufffalo) who beleives me, and is somewhat knowledglble about vulvodynia. Although I amin extreme discomfort, I wanted to thank you for telling me about vulvodynia. It it wasn'tfor you I do not know what I would do. The only thing is my vulvodynia keeps gettingworse. Tomorrow am going to have a vulvar bopsy done.I am also going to try the Oxalatediet and calcium. There is another doctor who belongs to the vulvar pain foundation, but Ihave to waist until Sept. to see her. Their is a waiting list !Your web site is great andso are your links. Thanks for your information. Julie Szurgot
CommentGreen is bacteria or parasite period, no other explanation that I can think of.Although, it would be odd that the green discharge goes away by itself? I did an IV for 10 days of Clindamyacin three years ago, that got rid of my lymph nodepain and the intense daily pain on my vulva, plus it cleared up the malaodor almostcompletely. Then after my surgery over a year later I did 6 days of IV Mefoxin, and 6 daysof IV Unasyn, and then 7 days of oral Sporonox. After those meds I feel great! Frank, I agree with you 100%!
CommentThanks for the info Jennifer! I find it so strange about the discharge (very mucousy),but there is no smell to it, nothing! So, the meds you took sound like antibiotics? Thatscares me. Afraid the v.v. will worsen if I take them again after coming this far. But Ido remember Dr Solomons (VP Foundation) saying that orally the antobiotics were irritants,but taken intravenously yielded fewer or few problems. Hmm. Were the meds for a yeast? Orfor the vulvodynia? Very intriguing. Was Dr Toth the prescriber of that method. I don'thave lymph pain perse, but suffer with CFS on top of the vv. Definitely a screwed upendocrine system. This thyroid med is just not woking yet, and the dosage has to be madestronger again. I just wish I would see results soon, as I know my immune system has beenliterally destroyed over the years due to misdiagnosis. I am so angry. Why do all of thesedoctor's have to see hard evidence? You know when there is something wrong. I could noteven get a referral to see the endocrinologist, my doc was so arrogant and hated the ideathat I thought he was wrong and wanted to go over his head. And I was right! I wrote anasty letter a few weeks back, so I don't even know if I am still a patient! Okay, enoughof the ranting. I am just glad to see a success story. Hopefully in the near future wewill see more recoveries! Laurel
CommentI had begged doctors for years to give me IV antibiotics. I thought a couple of timesabout going to Mexico, but I didn't want to do it with no direction, I wanted to betreated by a doctor that had at least an incling of what I was trying to accomplish. Iliterally have in my chart from years ago (my vulvodynia specialist) "patient verytearful today, insists this is an infection and wants antibiotics." Finally, myReferred me to Toth! It wasn't that he told me what was wrong as much as it was that Ifinally found a doctor that agreed with me about what was wrong, and had some experiencewith the whole mess. I think that if you have a PID type bacteria you need to be treated for PID. BV isbasically PID, but supposedly only in the vaginal canal. Chlamydia and other also cancause PID, but they only give you IV antibiotics, or two antibiotics at once for a fewweeks orally if you have 105 fever and are doubled over with abdominal pain. I think it ispossible that the levels of the infection (the numbers) could be the same in each patient,but simply their immune systems react differently. Meaning that they still need the largedose of antibiotics to properly get rid of the bacteria. The problem is that our symptomsare not severe enough, and that is why I am infertile! I'm angry too! Angry and sad! Laurel, I am not positive about this, but I am pretty sure that once you start takingsynthetic thyroid, you have to be on it for the rest of your life, your thyroid stopsproducing whatever it used to. Not that that is so horrible, I know plenty of people whohave been on synthroid forever, but I thought you might want to know this (again my infocould be wrong). It's just that I would want to know this if it is fact, because it seemsit is not a drug you can just "try" and then stop if you want to.
CommentWell, I am going to take all of this great information and see if my doctor willutilize it. Yes, I am convinced that there is something in there, bacteria but of whatorigin? I have never had fever or PID or endo or even abdominal pain, but one of theseinfections left behind something! I do have burning bladder at times, but it isn't severe,just there and it usually passes rather quickly. I notice it a couple of hours aftereating, so that is probably the culprit. As for the Levoxyl (synthetic thyroid), you areright on the money. My doctor says to get used to it, because I have to take it for thenext 70 years. But, I don't mind. My thyroid was so damaged that I was barely producingthe thyroid hormone at all, so it is vital and in that case I can live with taking iteveryday for life. Well, so long as it is working and so far, I have seen little change. Ihave had symptoms for so long that I think it will be a while before my body can adjust.Thanks again Jennifer. I hate to make you rehash all of this. Even for me it is hardsometimes to write here, but if it helps the cause... I will talk soon. Take care all,Laurel Sorry to hear about the infertility. Right now with no periods I want so badly toget pregnant. Before it was a surprise. I guess things work in mysterious ways. My sonsdaycare teacher has endometriosis. She could not get pregnant with all the scar tissue.The fertility doctor she was referred to did a laparascopy to get a good look at thedamage before evaluating what method of fertility to use and voila! She was pregnant! Shedid the same thing again 5 years later and the same thing happened. Last year she thoughtshe had the flu, and just delivered her third child last month! No procedures. Incredible.So, I am hopeful that I will get pregnant if I am patient. I have to wait for the thyroidpills to kick in and eventually the periods will return. So, we'll see! Thanks again forthe help!
CommentDoes anyone understand the connection between hormone levels and vulvodynia? Thehormone level must influence the pain, since a week before my period i suffer so much, andthen the day of my period--it turns back to a relatively normal state. and i have spokenwith women who have said that during their prregnancy they felt no pain whatsoever! i just finished taken a month long estrogen level test. because i was applyingestradiol to my vagina, and i was on birth control, my levels were far from normal--i waspeaking at all the wrong times. i immediately stopped taking the estrogen and the pill. adoctor said it might take a month or two to get my levels back to normal. doctors must have studied the connection between hormone levels and received pain.could we apply this information to vulvodynia? does anyone have any insights? does anyonefeel that a birth control pill might have preceeded their vulvodynia?
CommentTo D: Read the first post on 6/12. My wife started tearing not long after stopping thepill. I think for some there is a connection.
Commenthas anyone ever seen dr. jerome weiss in san francisco? he's a urologist who's allabout biofeedback and stretching or something -- sounds sketchy but i'm at my wits' endand feel it's time to try anything. any thoughts?
CommentD., I, too wonder if there is any connection between the pill and VV. I have had VV forjust over ten years, and it did start not too long after I started the pill. It is sodifficult to find the source of this damn problem. I have had some success with physicaltherapy and biofeedback, and the therapist uncovered the fact that I was having somesignificant misalignment problems with my pelvis. Also, my pelvic floor muscles wereknotted and somewhat disturbed. I suspect that alignment problems are not the only sourceof VV for me, though. When I first started experiencing the symptoms of VV (which for mehave been very painful intercourse, discomfort when inserting tampons, frequent UTI's, andpain in the tailbone area) I started getting an odorless, somewhat sticky discharge thatwas white-ish/yellow-ish in color. Of the many docotors I initially went to see with thesesymptoms, nobody was ever able to say for sure what was causing the discharge. I wastested for many things, and was told at one point that it was bacterial vaginosis. Fromwhat I have read about bacterial vaginosis, it does not sound like what I had/have. Istill experience some discharge on an almost daily basis - I notice that there is muchless of it just after my period. I don't think that it is just the normal, mucous-ydischarge that varies throughout the monthly cycle - when I have not been on the pill thefluctuations in the amount of my discharge throughout the month seemed much more tied tomy monthly cycle. I have learned to live with this discharge, as it is not odorous, and isnot excessive AND no doctor has ever been able to give any kind of conclusive answer. Doesanybody else experience this? Regarding the use of this guestbook, I have to say that I tried the e-groups mailinglist and have not had much luck navigating the process. Also, I received some creepyemails from a man who claimed to have found my email address on the vulvodynia list.Although I agree that this condition needs to be made more public, I cherish the anonymityof this guestbook. I do not always want to be identified when I feel like sharing/seekinginfo. on VV. Also, I feel that using the guestbook is infinitely easier to use than havingto keep up with frequent emails in my in box. Thanks to you all for listening. I consideryou all my support group, and I read this guestbook almost daily.
CommentHi everyone. I just got my Pap test results back and here's what the resuts were; Ihave an overgrowth of "ATYPICAL SQUAMOUS CELLS" and I possibly have HPV. Is thisthe same as an Atypical Yeast Infection? I asked the nurse that and she wasn't sure butsaid she'd ask the Dr, and get back with me. If it is that, do anyone know of any GOODmedications that can be prescribed to me without a lot of side effects? Please, I'd liketo get some feedback from all of you. Laurel, If you don't mind me asking, how is your sex life? Do you hurt durring orafterwards? I only ask because you know so much and I was just wondering about that.
CommentThat nurse is an idiot! HPV is human papoloma virus, more comonl called warts. If youreally have this, it is to be taken very seriously, because HPV is implicated in 90% ofcervical cancer. You should also know that only certain types of HPV seem to lead tocancer, and that the majority of the sexually active population has been exposed to it.You should have a repeat PAP, and then if it comes up positive again, your doctor maysuggest a biopsy, which you should be sure to have a DNA Hybridination done. Now, youcould just have inflammtion of the cells which could be caused by a variety of things,possibly a yeast infection, bacterial infection, irritation froma condom, etc. Laurel, I think it is important while you are telling everyone that thyroid might bethe answer, that taking the meds is life long before they start. There is a chance if adoctor agrees with a vulvodynia patient to prescribe that he will not bother to tell thepatient the ramifications.
CommentI agree with the birth control theory. So many say that starting it, or evendiscontinuing it has brought on the vulvodynia, or at least worsened it. I also think thatit has to do with hormones or estrogen levels at the very least. Lack of estrogen causesall sorts of gynecological problems, we see that predominantly in menopausal women, butnot limited to a wide degree of ages. Lynn, I could go up to a year with no sexualactivity. And that was very frustrating to the both of us. Up until the last year, I hadmore pain than I experience now. But, when I added the yeast diet to the low oxalate diet,that helped significanly. A lot of the time it was the fear of what the next few daysafter the sex would bring. But, I noticed that it was never as bad as I thought it wouldbe. What helped was immediately showering after, having my husband "pull-out" soto speak (in case of bacteria or yeast) unless obviously trying for a child, and applyinga heating pad to the area after. These measures alleviated the pain immensely. I do findthat pain is there on the left side at penetration, but if there is enough lubrication, itis not so bad once entry has been achieved. Also, we have to take it slow, no wildposition or fast movements, or I will regret it! Some days there is less discomfort thanothers, someday I will swell and we stop. Eddie knows that there is always thatpossibilty, but we mange to do alright, once I got over the fear. If I really want to havesex, I will eat something early in the day and fast for the rest of it, as I find foodscontribute to the pain. That helps a lot. And drinking lots of water! How is for you? Hopethis helps, and thanks again Jennifer for the tips!
CommentTo AMy -- Haven't seen Dr. Weiss, but he has a good reputation and has often beenmentioned positively in the Vulvar Foundation newsletters. I would think he was well wortha try --
CommentI just wanted to pass on the information regarding the Chicago Tribune article. You canread it at
CommentLynn, You can read more about atypical squamous cells at
CommentLynn: I'm beginning to have less constipation already, but I am still using stoolsottners and the occasional glycirine suppository. I am off of the narcotics and I am surethat has helped. Frank: I just had to respond to what you said a couple of days ago about your wifefeeling like less of a woman. I feel that way sometimes too. Just after having my surgeryI was also struggling a little with that when I thought about how my vagina no longer hadeverything in it. I felt incompleate. My husband has been verry supportive and has assuredme that he is not in the least conserned about how it is going to look downt there, hesjust hoping to have sex again. It has been so hard on him. The spouse in a vv relationshipsuffers too. Sometimes when I have no sex drive I feel incompleate because I have nodesire for my husband sexualy. When my labido is fine I feel frustrated because my husbandknows I am in the mood but I cant do it!! We do other things, but of course we miss sex. Imiss sex and feel sexually frustrated when I am in the mood and unable to preform. Latelyduring my recovery I have found that I have a problem while cuddling with my husband. Ithas been so long since I have had any sexual stimulis and when my labido kicks in theblood will rush to the area and to the clitoris and ache and throb! The doctor says thisis normal and that it will go away as I heal, but man is it frustrating!!! To top it offlatley I found that when I have sexual dreams my mind remembers that I just had surgeryand incorperates it into the dream so that I cant have sex there either!! Now you wouldthink that my mind would take advantage of that opportunity but no. To stop rambling hear,I definatly understand how it feels to feel like I am not a compleate woman. Christina
CommentI hope you guys dont mind if I remain anonamous, this is an embarrassing question. Has anyone with vestibulitis had a history of Marijuana use? I have had vestibulitis my entire sexually active life, and my doctor belives evenlonger. When I was 19 I began smoking Marijuana chronicly for about 3 years. I was wondering if anyone knows of any connection between vestibulitis and Marijuanause either good or bad. Interestingly enough...for the 3 years I was a hevy user, I had less symptoms. I do know that Marijuana dries out mucous membranes and slows down the immune system.Those would both be things that may have adverse effects. If anyone knows where I could look up information on the effects Marijuana use may haveon vulvar disorders please cut and paste the URL so I can look it up. Any thoughts....
CommentTo Cristina: I hope things get better for you as each day passes. I hope I didn't upsetyou ladies with my comment. This is very frustrating for both of us. The last few days mywife's clitoris has had a raw spot on it. She took Difulcan two days ago and it seems tobe lessening the yeast but she has that raw spot. I always enjoyed giving my wife sexualpleasure and while she accomodates my desires at times I cannot return the pleasure. I amlooking forward to her healing enough to enjoy some good feelings. I think of oursituation and think of all the women in countries where female circumcision or mutilationis performed. What kind of man doesn't want to give his mate all the ecstacy he can? Thereof plenty of things I cannot reason and this is one of them. Thanks for the comments.Frank B.
CommentI, too, am trying to deal with the fact that my boyfriend and i cannot make love. i am22 and met him a year and 1/2 ago. neither of us had made love before. we were able tomake love for only a few short months before i got the yeast infection and immediatelycame down with vulvodynia. we were so new to sex, and had been looking forward todeveloping together. it has now been a year and i have not recovered. we are so much inlove, but he is young, and i feel so guilty that we cannot have a "normal"relationship. Is it too much to ask him to stay with me even though i have no idea whenthis nightmare will be over? have any of you shared my experience? I feel that had we beenmarried, it would be expected he would tough it out. but we have a very new, but deep,relationship. i am just so confused and angry at my luck. FRANK-- i also developed a tiny red sore just below my clitoris that KILLS whentouched. my doctor said it was another little patch of nerves that vulvodynia can affect.sometimes it does not hurt so bad, but we feel so frustrated since it is very hard for myboyfriend to give me any kind of pleasure. i know how hard this must be for you because isee it in my boyfriend's eyes as well. as a male, what can i tell my boyfriend, what doeshe want to hear? i feel so powerless that he is frustrated and i cannot do a thing tochange it. please give me any advice you can. i wish your wife luck.
CommentSmoking marijuana or cigarettes makes yeast infections worse, so it could be a factor.
CommentThanks for the info. Diana Jennifer, I'm going to have to try to get to see another Vulvodynia specialist outhere. There are only 2 of them in this state. But I'm getting tired of my doctor anyway.Myinsurance will renew in 2 weeks. I'll keep you all informed about my conditions.
CommentTo D: I am so sorry you have to go through this at such a young age. I could write onwhat you have asked for hours but I will spare the others. Men think about sex often weare bombarded with it and our hormones remind us constantly, so it is not something thatcan be ingored. To deal with a relationship such as yours takes compassion, humanity and agreat deal of love and sacrifice. I do think there are men out there who would love to bewith a woman regardless of her vulvodynia condition. whether or not your boyfriend is thatman ; time will tell. I don't think you can talk or reason with a guy when it comes tothis illness. I'm older and even though I have a strong sex drive I don't want to cause mywife more pain either physically or emotionally. I will end this with one thought, I hopeyou have the strength to not torture yourself over this relationship, it is so easy forsome people to fall in love. The difficult task is to stay in love, endure what lifethrows at us. Try to deal with your health issues if you can, I have been reading andposting here for months and while I don't see any cures yet I'm hopeful. Be hopeful and bekind to yourself, love that is meant to be endures. Best of luck, best of health and bestof love. Frank B.
CommentLynn, any decent GYN should be able to do another PAP for you, he does not need to be aspecialist in vulvodynia. Did you look at the website Diana posted I think it was Christina who wrote a very good paragraph about how incomplete, andfrustrating it is to not be able to share sex with your partner, and that it feels like aloss to be less sexual (low libido) in the first place. Almost every vulvodynia sufferer Iknow feels this way, they are not happy to have an excuse not to have sex. For this veryreason I was very angry and upset when people/doctors/shrinks implied that it may besomething psycological, because I subconsciously didn't want to have sex...damn them! Alsothe dream thing...that sucks...when I had sexual dreams, I was always fine in them,although I had much fewer sex dreams back when I was in pain. I had horrible night maresof trying to run away or being confronted by a "bad man" that would beat me up,stab me or shoot me. These dream reoccur for me when I see doctors, it is all connected tome frustration with the doctors and how that preformed tests, etc. It has to be PostTraumatic Stress Disorder.
CommentHi everyone. Well, I bit the bullet and met with a wheelchair place and they brought ina custom cushion guy. The cushion is shaped like a toilet seat sort of, in that it's emptyin the center. The cushion consists of inflatable bladders. Fortunately I was able to usethis premade ($360) cushion, which they are going to customize by putting foam under it,upholstering it, etc. I had to bring them my office chair to work with. This whole thingwill cost close to $1000 and I HOPE Blue Cross pays for it. They pay for wheelchairs andcrutches, don't they? Then why not this cushion. We'll see. For those of you who areinterested, the cushion is called a Roho cushion. It really does allow you to sit withoutputting any pressure on the vulva. Hope you're all doing okay and that this info helpssome of you. Beth
CommentPainful Pap smears. Has anyone had trouble with painful pap smears? Mylast one was soexcruciating, I will ask to be put to sleep for my next one. I'd never had painful papsmears before this. My gyno said it was due to vaginismus. Since the exam (2 years ago) Ihave in fact felt unpleasant vulvar sensations when in pain, such as when I get aninjection. Could there be another explanation for my painful pap smear? Can a doctor betoo aggressive in obtaining a smear? I wasn't at all nervous before the exam, so if I wasafraid, it was subconsious. Any comments, anyone? Thanks.
Commenthttp://www.tampatribune.com/Baylife/MGA1PBHOXNC.html Here's today's Vulvodynia article from The Tampa Tribune. Sue
CommentIt would be helpful if the answers to the questionaire could be analysed by an expertto determine whether or not my symptoms are due to vulvodynia
CommentHey. It's Jennifer's friend Allison again, the one who spoke about my pituitary tumor acouple of weeks ago. I thought I'd stop in briefly again, and saw a little discussion fromFrank and others about the connection with VV and the pill. (and also about Frank's wife'scuts). My whole reason for telling y'all my prolactinoma story (and resulting success afterstarting treatment for it) was not to suggest that others with vulvodynia might also havea prolactinoma, per se. My point was that my prolactinoma was throwing off my HORMONElevels -- my estrogen was not where it should have been; my testosterone was not where itshould have been, etc. I think that what "fixed" me was getting my hormones backat the levels where they are supposed to be. That's why I encouraged everyone to get theirhormone levels checked..... If any of you see a correlation of your pain starting with the beginning, or ending, ofbirth control use, or if your cycles are not "regular," then I think you reallyshould look into the possibility that part of your problem might be hormonally related. And Frank, these cuts that your wife is getting might also be hormonally related. Useof Estrace cream always helped cut down on the number of cuts that I would get.Supposedly, when your estrogen level is not where it should be, your vulvar tissue thinsout and is not as strong as it used to be, resulting in skin that splits easily. Eventhough my pain is gone, I am still getting cuts every once and a while, so I'm still usingthe estrace until my vulvar tissue is completely built back up. Maybe you wife should trythat if she hasn't already? Admittedly Frank, I haven't had the time to completely read your wife's story and hearwhat her symptoms are. But if she's getting cuts, and there is some correlation of heronset of VV with stopping BC pills, then it might be worth it for her to get her hormonelevels checked out. If y'all have questions, (since I don't check here all that often), maybe Jennifercould forward them to me? Or at least email me to let me know someone asked a question? :) Take care y'all, Allison
CommentHi- I recently got an email from 'depaola@tgsolutions.com' and I responded with a verylong email. After all of my typing the message came back undeliverable!!! Laura if you seethis, please email me again. You can use this address or the one you used before. :)
Commentthanks to all who post the addresses for the news articles. it is a wonderful help!
CommentTo Allison& Jennifer: My wife did use Estrace for several weeks following surgeryto form a new scar and repair some muscles. Her labia seemed to shrink and she tore uponintercourse. I don't doubt that Estrace helps many women, I just think it makes sense todo blood hormone tests so you know where you are at and what course to follow. A couple ofyears prior to this starting at my request her Gyn checked her testosterone level and saidit was low. He didn't offer anything beyond that comment. I would like detailed testing sothere is less guess work with treatment.
CommentThat makes 3 newspaper articals. Thats great that we are getting some coverage. Itwould be wonderful if someone published one in the Minneapolis Star and Tribune. Christina
CommentFrank, I understand why you want the testing done, instead of happhazardly throwingmeds at your wife. As much as I hate doctors, I think it is tough, becuase there is arange of normal, and each individual may react differently to different hormone levels.Also, just off the top of my head, I know that you can have a good progesterone bloodcount, but still possibly not have enough progesterone in the lining of the uteris tosupport a baby, so the blood stuff doesn't always work, I don't know what that means fortestosterone or estrogen, but I just thought I would throw that outthere. Another exampleis that my vulva tissue was full of eosinophils, fighters from the immune system, but myeosinophil count in my blood was well within the normal range. Very frustrating!! When Iused estrace I felt, what I call pregnant. My boobs hurt and felt hard, difficult todescribe. I tried using it two separate times, and it happened both, I guess that extralittle bit of estrogen that I was absorbing was enough to knock me out of kilter. I agreeyour wife should have some basic tests run, no question, but they may all come backnormal, so I want you to be prepared. Isn't it Laurel who said she had normal thyroidtests forever, but now she found a doctor that beleives she has hypothyroidism. To behonest I am not sure what I think about the thyroid thing, but obviously the whole thingis very difficult and confusing. Won't your wife get some blood tests when she gets heryearly pap?
CommentEstrace cream makes my breasts hurt too. Since you stopped taking it, what are youusing instead? I thought I was the only one who got sore boobs from the Estrace b/c no oneelse every mentioned it before.
CommentThanks for the Tampa vulvodynia article! I responded to the writer with my saga and thesymptoms and invited her to read at this website. Jennifer, I know the whole thyroid thingsounds unbelievable and overwhelming. But, I tell you there is something with a thyroidand hormone and immune system imbalances. I have farigue so badly that I cannot climbstairs. I am freezing if it is below 75 degrees. Of course, I am severe. But the doctorswere telling me that it was hormonal. No kidding! They had no solution to offer. Until Ifound a fibromyalgia specialist. Now I am in the process of being cured b/c my thyroid docsays that my hormone balance after the thyroid is fixed. And the thyroid has evrything todo with the pituitary, I am going to stick with him. Fibromyalgia is general malaise. Eachcase is unique. Something more has to be the cause. I do think there is a correlationbetween the two. The books I have are incredible. Extremely informative and give a glimmerof hope. Just waiting... It knocks down the immune system and that is where I feel theyeast came in and took up residence in my body. My system is just not equipped at thistime to fight what is in there. But, I will post if I see an improvement. I think thosewith or even without fibromyalgia should at the very least look into the possibility.Chronic fatigue and diminished sweating are 2 major symptoms, but not every one has thesame ones. Jennifer, your input is interesting. Hello to all! laurel
CommentTo Jennifer: I have been making the case to my wife for thorough hormone blood testingfor quite some time. I feel that unless I become a doctor she will never trust mytheories. Certainly blood hormone counts are not the end all but they are better thannothing to go on. I wrote several months ago about something I saw concerning hormonelevels. A pioneer in the field of life extension talked about " Optimum Levels",that is a range at which the body operates at its best. So while a low normal oftestosterone in a man my not alarm most doctors, bringing it to the upper safe level mightreturn the patient to a better physical state. I would think in a woman who has estrogenon the low but acceptable level there might be some improvement if the level is raised.I'm of course going on research that is still not widely acceptable. Please do not selfmedicate. So much is available through the internet, I want the doctors to investigatethis angle. What are your thoughts?
CommentHey Jennifer, Girl let me tell you! I spoke to my Dr. today(not the one that performedmy surgery, but his assistant). I spoke to her about being tested for HPV. She told methat she wasn't going to test me for it because even if I did have it, there is notreatment for it so being tested would not make a difference. I told her that I want to betested just so I can know if that is causing my Vulvodynia. I also told her I wanted to betested for an ATYPICAL yeast infection and she told me that my pap came up with no yeastso she doesn't need to test me for that. I told her that I wanted to be tested for bothbecause I need to know for sure what's going on with me. Well once again, she talked herway out of it. I was at work so I couldn't cuss her out like I would have liked to.Anyways, I told her that HPV can cause cancer and she said that that's ONLY a small chanceand that 40-60% have HPV. Girl, she was just pissing me off! I won't be going there anymore! I'm about to change my insurance in 2 weeks, I'm going to try to see the otherdoctor. Oh and no I did not check out that site of the address you guys gave me. I'll dothat later on because right now, I'm about to go play basketball with my son. Thanks forall your advice. I'll post back later. Laurel, I forgot to tell you that I have not been sexually active in 2 years. Me and myhusband are not having sex yet. We're giving my vulva more time to recover since I had mysurgery 20 weeks ago. Thanks everyone for posting those addresses so we can read those articles. I've printedthem out so I can make LOTS AND LOTS of copies of them and distribute them out to thepublic(basically women at the doctor's office and in the gyms). gotta go now!
CommentHi, I am 31 and have had VV for 12 years. The last three years I was doing well about75-80 %. But at the end of my pregnancy, I developed a yeast infection and I have not beenthe same since. Once I stopped nursing, I notice increase in discharge daily. Mynaturapathic doc is helping build my immune system but this discharge is irriating(physical and emotional). I went to a gyn who is also into natural practice and she said Ihad yeast( no surprise) The nystatin didn't cut it) And I may have a bacterial infection.My question is that some people talked about IV antibiotic. Am I mistaken or did someonesay they cause less complications or side effects? Please explain. I have a beautiful 8month old boy and I just want to feel well. Why is that so much to ask ? I am very luckybecause I have a supportive family and husband. SO I have a lot but I always want more, Myhealth !!
CommentI asked a question earlyer about if anyone knew of a connection between vulvodynia andMarijuana use. This is a serious question. I am not posting my name because I amembarrased. If anyone has any information I would really like to know
CommentI just had my estrogen levels tested through a one month long saliva test. i got thekit at an independant pharamacy in my town. if anyone is interested i can give you thecompany's name and address. the results showed that my estradiol levels were extremely high, and were not inharmony with my progestorone (sp?) levels. i am going off the pill and the estradiol(estrace cream), and i want to switch to the milder estriol (also better to use if breastcancer runs in your family). have people had luck with estriol when attempting tostrengthen their tissue? i really only hear about estrace and vulvodynia, however, i wantmy estrogen levels to return to normal. the one thing that confuses me is : wouldn't every woman using estradiol haveabnormally high estrogen levels? so is it good to have high levels of estradiol in yourbody, even if it causes an imabalance? could anyone clue me in? thanks!
CommentCan someone tell me about Dr. Toth who has been mentioned in the guestbooks? Is he inNew York and is he an M.D.? also, has anyone had success with physical therapy forsoreness? Thanks.
CommentLYNN, first I think you should get a repeat PAP in a couple of months, before you doany other testing for your cervix. If the PAP regresses to normal continue to do PAP'aevery three months, until you feel comfortable about doing them less often (remember I amnot a doctor). I do not think the abnormal PAP really has anything to do with the vulvapain, except that it basically shows that you have had unprotected sex in your life time,and anything is possible (although remember I am very biased towards the infectioustheory). LAUREL, I hope I did not sound like I think you are wrong about the thyroid. I justknow very litlle about this theory, and I personally never believed it was my thyroid,although doctors hypothesized that (strange reversal of things). I have told you that myaunt really belives that her thyroid is whacked, she has FM, when doc's won't belive her.I also wanted to say that I am cold when it is below 75, and so is my sister-in-law, andalmost all women who have not gone through menapause. Now, frank brought up a veryinteresting topic... FRANK, I thik that the hormonal thing you brought up about the ideal amounts of eachhormone, instead of just being within the "normal" range is very interesting. Iimmediately thought of the PCOS exampl and the insulin levels. Remember I had posted thatthese women have there sugar levels only slightly off, an amount that usually would not betreated, and is considered o.k., but when they are treated their ovulation/cycles/periodscome back...so there are definitly examples in medicine of what you are saying in yourpost. ABOUT THE BREAST HURTING ESTRACE thing.....when I started estrace within a week Icomplained about my boobs. The doctor insisted it was such a small amount of estrogenbeing absorbed into the body that it was impossible. I used it for about three weeks, andthen stopped. When I saw her again, she was dissappointed that I stopped my treatment, soa few weeks after that, since my vulva was hurting like crazy, I tried the estrace again,and the exact same thing happened....so I stopped!!! Forever! Later, I spoke to some otherwomen that do not have vulvodynia, but used estrace for other reasons, and they had thesame experience. What the hell is going on? This crap happens to me all the time, doctor'sare completely clueless about side affects. This whole thing was over five years ago,maybe six. For the girl who asked about TOTH, look back in the guestbook before this for mypostings. I don't know if I will get around to it today, but I will try to forward you anemail with more explanation.
CommentTo D : Please post the product name and manufacturer of that hormone test. There is ainternet site " Medscape.com " consider registering it is free and their Women'sHealth section is great. Thank you.
CommentJennifer, do you mind if I ask your age or thereabouts? Are you menopausal (pre)? Youseem young. I find it odd about being cold. My body temp is so low, I had told you aboutthe simple basal temp test that gives you an idea if you have it. Do you feel fatigued?Out of breath at all? My hair was so dry and my nails grew so slowly (hair too). And ifelt like I had trouble swallowing along with slurred apeech and movements. God, it wasand is awful. I theorize that I have trouble with digestion. Mainly because I have novulvar pain that is until I eat something, and more especially, when it is a large meal.Also, I notice heart pounding a couple of hours after I eat. I can pinpoint the time whenthe v.v. will start! Exactly 2 hours later. I have to drink loads of water to try to flushthe system. Even if a food is low in oxalate, it can trigger pain if the meal is toolarge. My peak of pain seems to be in the afternoon to early eve. So, if I don't eat, Iseem great. I weigh 98 as it is. I can't starve myself! And I love food too much. Whathelps is eating 2 meals a day. One very early and then dinner. I think 3 would be too muchfor the vulva. Anyone else notice this? If I have yeast, I was thinking of trying Diflucanalong with the anti candida diet, but am afraid it may aggravate the condition. I welcomeany feedback on the medication or some other anti fungal that may help. Thanks.
CommentJennifer, I just read your posting about estrace and how it made your boobs hurt. Ijust had a complete hysterectomy a little over 4 wks ago and before the hysterectomy myboobs hurt almost all the time, in fact the mornign of the surgery they hurt so bad andhad been for a couple of months I could hardly stand it. I had started my period when Iwas 8 1/2 yrs old and had always had a problem with this. Anyways, what i'm getting atthat after the surgery the 1st thing I noticed was that my boobs weren't hurting anymoreand when I left the hospital my dr put me a low dosage of estrace and I haven't beenbothered with the tenderness in my breasts. Unfortunalty I think they are going to have toput my on a larger dose, cause I'm having hot flashes and night sweats. Hope when theyadjust it, it doesn't cause any breast tenderness. I've also had a problem trying to getin the chat room,,,,I can't even figure out how to get into it. anyone else having aproblem? Chris
CommentLaurel, I am 33, and as you know I have said many times that "all symptomscount" but there is a possibility you have two things going on at once, or of courseit is possibly that you have FM and it includes vulvodynia as well, cannot be sure.Anyway, I want to suggest to you that low iron can cause many of the things you describe,being cold, out of breath, do you have low iron, or any type of anemia? You wouldn'thappen to be from the middle east/sephardic/southern italian? I doubt you are, your namedoesn't suggest that, but you never know. Or, there is the possibility of electrolitesbeing out of kilter, which can be very dangerous, causing heart trouble, etc. Of course,there is the possibility that I have some of the same symptoms you have, and ten yearsfrom now I will suffer like you have, maybe it is progressive? About the low temp, I didnot look back at your posting but I do remember your temp being very low. I am usually97.7-97.9, and so is my boss who is 48 (has not gone through menopause yet) and mygirlfriend who was trying to figure out when she ovulates. Many many women are"low". Temperature also has a range for normal, and I assume that 98.6 was a mantemperature, because that standard has been around forever, and we all know that all testswere based on men until recently (I am just guessing here).
CommentTo the person who uses marijauna, I don't know if that has anything to do with yourcondition. I've smoked it a few time before but that was about 3 years prior to when Ifirst got this condition. So I don't have an answer for you. Jeffefer- Yes I sure will have a repeated test in 3 months. But of course, it'll bewith another doctor.
CommentWell, I can't believe it. When I read the post regarding the possibility of an std, Iwas apalled. I have been suffering for 5 years from constant burning, tingling, and oddsensations. Never any sores or blisters. I was finally "diagnosed" withvulvodynia, which I now know is not a disease but a symptom. I have had pelvic floorphysical therapy, chiropractic care, all kinds of cultures etc...including herpescultures. Apparently, cultures and most lab blood tests are not accurate. Well, to mysurprise, I learned many of the blood tests they use are not specific for the herpesvirus. My dr. finally did some research and suggested a reliable herpes test called thewestern blot. This test is only available through the university of washington...drsoffices can NOT perform an accurate blood test for herpes and he had to send my blood workto this lab to get this done. I tested positive for hsv 2...my husband of 12 years hasnever shown symptoms. My dr. is sure now that my problems all stem from herpes irritatingthe nerves and I am starting on antivirals to see if they help. I would have neverbelieved it. Also, I have learned that screens for stds do not include herpes...that infact, the only way one can reliably test for herpes is through this western blot and maybethe type specific POCKit test that I have read about as well, but my dr. isn't up to speedon that one. Drs are sadly misinformed of this illness and how to test for it. They alsodo not want to tell patients things they don't want to hear. I don't know how to feel.
CommentJennifer, I am 1/2 Irish, 1/8 italian (sicilian), 1/8 french, 1/4 english. I suspectthat my symptoms stem from my dad's side (irish, english). I tend to think the thyroid isrelated to the v.v. simply because my dad shows all the classic symptoms (he has fm) ofthyroid and his tests are not coming up either, but also my sister has the same conditionand had vulvar problems until she was cauterized (I have always been more severe thanher). It is very sad. My dad's side of the family is extremely fair skinned, most are redheads and all but 2 or 3 of his siblings have blue eyes (my dad has hazel). I tan prettyeasily, have medium brown hair and green eyes. The temp test has to be done as soon as youwake up, and not during ovulation or the first 3 days of a period. You have to hold athermometer under the pit for 10 minutes with no movemment. If the reading is below thenormal 97.8-98.2 (we have lower temps in the morning), the chances are strong that athyroid exists. While it can be either sex, most people who have thyroid are women. Thesamegoes for an overactive thyroid (hyperthyroidism). if the reading is above 98.2, theindication for overactivity is strong. The test is so easy. Readings should be taken for7-10 days and then come up with an average. My reading s were consistently 96.0-96.6. Myendocrinologist thinks that 60% of the population has it and has no clue. Perhaps evengreater numbers. My periods are irregular and absent for months. But, heavy periods arecommon, or the early onset of menstruation or very late like me (18 years). it is believedthat hysterectomies could be avouided if more doctors knew to look for a thyroidcondition. Yes, my iron has been tested several times. I thought that was what I had. Theonly time it dipped was when I was pregnant. I came very close to anemia, but deliveredbefore they put me on iron supplements (as if I am not constipated enough!). Let me knowif you have any other ideas. I welcome them. Thanks for the info! Laurel
CommentJennifer, I am 1/2 Irish, 1/8 italian (sicilian), 1/8 french, 1/4 english. I suspectthat my symptoms stem from my dad's side (irish, english). I tend to think the thyroid isrelated to the v.v. simply because my dad shows all the classic symptoms (he has fm) ofthyroid and his tests are not coming up either, but also my sister has the same conditionand had vulvar problems until she was cauterized (I have always been more severe thanher). It is very sad. My dad's side of the family is extremely fair skinned, most are redheads and all but 2 or 3 of his siblings have blue eyes (my dad has hazel). I tan prettyeasily, have medium brown hair and green eyes. The temp test has to be done as soon as youwake up, and not during ovulation or the first 3 days of a period. You have to hold athermometer under the pit for 10 minutes with no movemment. If the reading is below thenormal 97.8-98.2 (we have lower temps in the morning), the chances are strong that athyroid exists. While it can be either sex, most people who have thyroid are women. Thesamegoes for an overactive thyroid (hyperthyroidism). if the reading is above 98.2, theindication for overactivity is strong. The test is so easy. Readings should be taken for7-10 days and then come up with an average. My reading s were consistently 96.0-96.6. Myendocrinologist thinks that 60% of the population has it and has no clue. Perhaps evengreater numbers. My periods are irregular and absent for months. But, heavy periods arecommon, or the early onset of menstruation or very late like me (18 years). it is believedthat hysterectomies could be avouided if more doctors knew to look for a thyroidcondition. Yes, my iron has been tested several times. I thought that was what I had. Theonly time it dipped was when I was pregnant. I came very close to anemia, but deliveredbefore they put me on iron supplements (as if I am not constipated enough!). Let me knowif you have any other ideas. I welcome them. Thanks for the info! Laurel
CommentJust a quick question, after reading the Daily News story last week, and researchingthis condition, was interested to learn how this effects a woman's sex drive, andwondering how much more, or less receiving oral sex is for a woman suffering from thisdiagonsis compared to vaginal sex. I was blessed with Chrons disease.... Good luck!
CommentI would like to answer the last question by Suz. My wife has vulvodynia, her symptomsvary currently she has a raw spot on the tip of her clitoris and is a little raw on theinside of one labia. I want very much to give her pleasure but how can you perform oralsex on a woman who has these raw areas. This would only further inflame and damage analready irritated area of skin. Try to imagine a topical skin scrape it's not bleeding butthe skin is rubbed off a bit , now imagine rubbing that area? This condition stinks, itaffects not only intercourse but oral sex as well. Not to mention the burning , itchingand for some pain!!! Research is needed because the number of women suffering is on theincrease, it is onset at different ages so there isn't a safe escape.
CommentLIZA, I am not a doctor, but I do not think your problem is herpes. I do believe thatyour test was accurate, but I do not believe it causes your pain. Herpes is a greatdiagnosis for doctor's to latch onto to explain vulva pain, but they latch onto it becauseTHEY feel like they finally have an answer. First, if you have never noticed a herpesblister you could have HSV on your mouth and not your vulva, the blood test just says youhave it somewhere (a huge percent of the population has this virus). You could have gottenit when you were 10 years old, before you were even sexually active. Don't be freaked out.MOST women have had some sort of STD.
CommentThe burning is terrible. I have cut my pubic hairs short to try to avoid the stingingand itching. The biggest problem I have is with my clitoris. It seems to always throb,pull, and burn. A great deal of the time it is purple, as though the blood supply is beingchoked off. The left side of my clitoris, when the hood is pulled back, has what seems tobe a growth. GYN says it seems normal. When I used Nystatin, it caused severe pain runningfrom the clitoris up into my abdomen, but only on the right side. It sometimes appearsthere is a white tip to my clitoris. On the underside (looked in a mirror) there seems tobe two ridges that are unbearable sensitive. The ridges run 3 to 9 o'clock and do not meetin the middle. Does anyone else out there have the same problem?
CommentI Had VERY PAINFUL little white bumps near my clitoris, that when I would break themopen, the white stuff seemed to me to be like the white stuff gathering on my vulva(discharge). I also had ingrown hairs at or near my clitoris that were very stiff, andcaused a lot of irritation, sometimes I felt like a pin was in me. My husband or doctorused to pull them for me, and the releif was incredible.
CommentFor TJ: My pain is 99.9% the left side, bith outside and in, mostly inside. I havenoticed that just on the inside of the vulva ther seems to be an extra piece of skin. Itlooks as if I was cut there at one time and was sewn up incorrectly, that is the only wayto explain it. It is just a jagged piece of skin. If my flareup is bad, I cannot go nearthe area at all. If my pain is gone, I can touch it all day long. I have had my husbandlook all around there to see if the area gets red and irritated, but he says that justthat flap of skin is there. I don't know what to make of it. Best wishes to all! Laurel
Commenthello. i've had vaginal pain for about 8 years, but i was pain free for over a yearafter i took desipramine for several months. unforunately i hadn't taken it for about ayear when the pain returned, and i've been taking the desipramine again but it isn'thelping. does anyone have experience with a tricyclic helping at first but not helping asecond time around, and trying another one? also, can anyone recommend a dr in the san francisco area -- or the chicago area (mysister lives there and i'm thinking of relocating, esp. if there's a good dr.) thank you!
CommentI want to thank the two people who have responded to my post where I asked about anyconnections between Marijuana use and vulvodynia. If anyone else has any input on this Iwould apreciate it. When I try to look for information on the web I cant find anything. Iam sorry I dont post my name. I still find this all embarrassing. I know you all have beenon the guestbook for a while and are more comfortable discussing thease things. I havealot of respect for that. Untill I am too, I apreciate everyone who is taking my questionsseriously.
CommentTo TJ : My wife had a white tip or outer skin on her clitoris, it looked like when yourfinger is in water too long. She took Diflucan several days ago for a yeast infection atleast that's what we think she had. Symptoms were clumpy white discharge but she did nothave it checked so we are not positive. The medicine seems to have stopped the dischargebut she still has a raw spot on her clitoris. That white looking skin is not there justthe small raw tip. Doesn't seem to be getting any better . How can they blame nerveinflamation for these skin problems. I can understand the pain connection with inflamednerves not the raw areas or skin tears, I just don't understand.
CommentTo aeliz: I don't know any doctors in San Francisco, but there is an OB/GYN that Ireally like in the East Bay (Walnut Creek area). Her name is Janette Walker and her phonenumber is (925) 945-6600. She is the doctor who (finally!) diagnosed my vestibulitis afteryears of being misdiagnosed. She's knowledgeable, staightforward and compassionate. Goodluck!
CommentFrank, I'd like to know if your wife is still taking the vanicream and if so, how is itworking for her. Also you had mentioned that you don't understand how could the nerveinflamation effects ones skin. That's a mystery to me. But what I don't understand is howcould what we eat causes us pain and discomfort in the vulva or even through out ourbodies when most people don't have that problem? That just doesn't make any since to me.I'm on the Low Oxolate diet so that's been helping me keep the pain under control. Butsometimes even when I drink a glass of water, I'll feel my nerves tingling all through myentire body(it doesn't hurt though). It's just so crazy to me. To the person who has the marijuana problem, since you are not getting enoughinformation, I'd suggest this; Perhaps you should read more about marijuana and how it caneffect your body. See if the effects have anything to do with sex drive and all that. Justtry to do more research on it and see if you can some how find a connection with that andyour symptoms. If you don't mind me asking, how old are you? And what is your race? I knowsome people who smoke weed for so long, for years and years and years. But none of them(as far as I know) have this crazy condition. I'm the only one that I know with it(exeptall of us on this site). But anyways, good luck to you. I hope you find some answers.
CommentTo Lynn: I know you and some of the other ladies have had good results from theVanicream but it hasn't helped us. My wife applied it twice a day for several weeks andmaybe it was the power of suggestion because she thought she was better but the tearingwas still there and the rawness. She occassionally gets these raw areas towards the insideand clitoris, looks like the skin has been rubbed raw and I haven't gone near her. Shesaid she doesn't want to put anymore creams on it, says they just make her feel yucky. Sheis waiting to get some records from her Gyn so she can see another Dr. but I don't knowhat that will accomplish. I've been pushing her to do just that for months but to behonest I think the change will have to come from research.The best I can hope for is a Dr.who will test her different hormone levels and put our minds at ease regarding that. Seemsthe Diflucan pill has resolved the yeast like discharge she has recently. The raw skin ?We haven't had sex in awhile so at least she isn't tearing. She and I are just veryfrustrated and upset with not being able to be intimate. Feel better and thanks for thethought.
CommentI am glad that I found this group. I was diagnosed with vistibulitis only a few weeksago. I suffered the most horrific pain after an episode of herpes. This was very strangebecause I have had that disease for over 10 years. My husband and I were trying toconceive our first baby. We were married less than a year ago. The pain caused my to cryat least 4 times a day. I am currently finding SOME relief with neurontin and tegratol. Iwas told to use estrogen cream, but that made the burning even worse. I was THEN told toput it internally. I am stil recovering from pain internally (which I did not havebefore!) This has been a horrible nightmare, as I am sure it has for many women here. Ihope it is alright that I join, as I do not have vulvodynia (at least I don't think so). Iam waiting for tests to see if hpv caused this to happen. I feel awful and of course withthe medication, we can no longer try to get pregnant, at this point. I don't know whatwill happen if I try to get off the pills. I am waiting to hear from my "team"of doctors..a obgyn, a neurologists, and an internist. Thank you for letting me share my story. Any comments or advice would be wonderful!Thank you!
CommentLynn: To answer you question, I am white of German decent and I am 27 years old. I startedsmoking marijuana when I was 19 and smoked hevely for about 31/2 years. I quit when Irealized what it was doing to my motivation and I began haveing more brochitis. I stillimbibe every once and a while, but I think I can count the times on my 2 hands that I havesmoked in the past 5 years. The interesting thing with this is that I have had this disorder before the marijuanause and after, but during use the symptoms were minnimal. I will say that when symptomsreturned they were much worse then before. The things I know about use that may relate is this. Marijuana affects how the brainsends signals with the nerves, paticularly in comunication with the hippocampus. I knowthat it drys out mucos membranes, it decreases sex drive over time, and it suppresses theimmune system. Thease all sound like reasons that marijuana could have made things worse,but during use I actually felt better. Hovever that could be because of the pain releafaspect of it. I am actually working up the nerve to ask my doctor about marijuana use and myvulvodynia when I see him next. Maby I will get some answers from him. I have just beenhesitent because use is so frowned upon that I am afraid that he will lose respect for meand that respect is so very important when your trying to get answers out of doctorsregarding vulvodynia. It took years just to be taken seriously. Normaly I would think thatif I cant talk to the doctor about it then I have the wrong doctor, but doctors who knowabout vulvodynia are so scarce. Anyways thanks for your help.
CommentTo the lady who smokes pot: Think of the millions of women who smoke pot and don't havevulovdynia. I see some common thread in these posts and that is trying to think back atwhat started it all. The women who have had multiple sex partners may somehow feel aconnection between the two. My wife and I made love frequently and I wonder if it isresponsible for her problems. You are looking to the pot and thinking " Did thisstuff cause it or make it worse"? Doctors are people, in order to understand andtreat they need all the facts. Don't be shy about it , you are paying for a service not alesson on morals. There may be dozens of causes for these symptoms, stop blaming yourself. Best of luck.
CommentLIZA.... Are you having any luck with the anti-viral meds??? How long does the Dr.think it will take before you feel relief???
CommentHey girls and guys! Had a rough day yesterday (for the past week) and yes, it is aletdown. Today, I got myself up, and went to church. There, I sat selfishly and prayed formyself for the hour. My mom saw me last night at dinner and knew I was having such a roughtime, especially when I walked in the restaurant with a pillow, do you think that was deadgiveaway or what? I said, mom, it has been 9 years and I just can't take it anymore. Ithink that made her think I was going to do something drastic (which I would never do). Iwas just tired,angry and somewhat depressed. I have been having days of feeling great,then all of a sudden, BAM, I am in pain for days and just can't figure out why. I seem tobe following all of my diets and medications. What gives? Well, my mom must have been upall night on the web looking for anything she could to help (she is the most wonderfulwoman in the universe). Today she showed up and brought me an article that gives me aglimmer of hope, and yes, it has to do with antibiotic use and the yeast it left behind.Thanks mom! This is a success story, so I hope that it will bring hope to some of you.Some of you may have read it already, but to those who have not, please do. By the way,the docter treating is Dr Gordon Davis in Arizona. His website has changed and I cannotfind it at all. If anyone is familiar with his web or email can you please post it? Iwould love to get in contact with this man. Thank you. I have tried to provide the link toclick on, but cannot do it correctly. Sorry to make you type in this lengthy web address.Jennifer, are you familiar with this particular yeast in the article (T. Glabrata)? Frank,Happy Father's Day! Talk soon, Laurel www.angelfire.com/hi/HeidiHomePage/index11.html Bythe way, my mom said that one woman who posted said after she got the deprovera shot herburning was so bad that she thought she was going to die. Please do not use that!
CommentTo Laurel: Thanks. I printed out that Heidi article then researched the strain of yeastit mentioned. I found an article at the J.A.M.A women's health site. " Treatment ofTorulopsis Galabrata Vaginosis". If I understood the article this yeast is resistantto most over the counter stuff, but they mention boric-acid vaginal treatment. My wife hashad two courses of the boric acid suppositories, now she is has used Diflucan. This maynot be the cause of her problem but certainly if the Dr.s will properly diagnose thestrain of yeast it will lead to proper treatment. I hope this works for you and many otherladies. With this kind of insite progress will be made.Good luck..
CommentI have just used a new ointment on my vulva and it has helped a great deal. I believe Iread about it on this website, but if not, it is called Bag Balm. It is sold at Walmart orperhaps another drug storel. It is actually for cow udders, but it works very well forother things... I thought this might be of benefit to another lady who is suffering. I also have discovered that potatoes,coffee, too many fruits or veggies cause burningfor me. Also dried beans, Bar B Q Sauce, ketchup, tomatoes etc... Hope this helps.
CommentFor Debbie, yes, you have discovered many high oxalate foods. I think you should orderthe low oxalate cookbook through the Vulvar Pain Foundation. It helps a great deal. Ifnot, I listed all the irritants and okay foods in the 16th guestbook. Print it out. It canavert a potential disaster. You are welcome Frank. Hope things are better at home. Talksoo, laurel
CommentI wanted to respond to the marijuana smoker: I have never used marijuana in my whole life(I am 42 years old) and I have hadvulvodynia for 13 years. I know that each seems to have a different cause for each person,but in my case it is definitely NOT marijuana or any other street drug use. Good Luck!
CommentFYI. I want to let everyone know what is going on with me. I have improved quite a bit recently. I told you all that I went for biofeedbacktherapy and myofascial release. I have also been taking 40 mg of prozac for depression andalso to raise my pain threshold. Whatever I have been doing it seems to be working. Ireally think the prozac is working, because I had an abcess tooth last week and I justfelt pressure no pain. I went to the dentist and he told me it was an abcess and needed aroot canal. I have had that kind of thing before and been in alot of pain. So my thinkingis that the prozac has indeed raised my pain threshold, because I really no longer havedaily pain from the vulvodynia. There is occasional pain, but not constant like before. Give it a try. What have you got to lose?
CommentI had Torulopsis Galabrata the seconf time I went to Toth. The first time I did nothave yeast overgrowth. Although I do believe this yeast infection can cause vaginal pain,and should be treated, I do not think it is the end all answer to vulvodynia. It would beimportant, as Frank would say, to get the proper test that shows you actually have a yeastinfection, because in the end antifungals change the balance of the vagina likeantibiotics do. Toth gave me Sporonox for a week, and even after the Sporonox I still hadsome yeast grow, but I feel good, so we made the dicision not to continue to treat. To the girl who asked about the MARIJUANA, I think you think people are ignoring you orjudging you. In my case I never smoked marijuana, and I know many people that did, thatdon't have this problem. I guess it is possible it might have contributed to your problem,but I do not think your doctor will know anything more than you do on the subject. Also, Icannot help wondering whether most people did not respond, because they themselves did notsmoke weed in the past, which would mean there is not correlation to pot and vulvodynia.Save yourself the conversation with your doc, I have a feeling it is not related, and ifit is there is not much to do about it.
CommentHey Debbie, Glad you tried the Bag Balm. It was me who wrote about it. My husband useto pick up milk at the Dairy Farms and he is the one who suggested it to me. It doesn'tcure it , but it sure does help. I was at Walgreens the other day and they are alsoselling it there now. I found it where the hand and body lotions are at. I also found atWalgreens an ointment called E Ointment at Walgreens by the musclepain relief ointmentsthat also is very good. Pain Free days to all of us. Chris
CommentHeavy marijuana use dampens the immune system, I've read. Since VVS is an immuneresponse, there might be a connection. Seems like it would make things better rather thanworse, though.
CommentI just found out about something that might interest some of you. After a few weeks ofpanic, thinking I had found a wart, I finally got to the doctor and the two little whitebumps I have on my vulva are called Molluscum Contagiosum. They are related to chicken pox, just a surface virus. If I had not just had themtested and removed, they would have cleared up on their own. I know some of you complainabout strange lumps and bumps, you should check this out at Such a relief to know it's not a wart!
CommentI guess it is a relief to know it is not a wart, because molluscum has not beenimplicated in leading to cancer, but it is still caught basically by intimate contact andit is still a virus, that can continue to come back, and you can still blame some guy forhaving it, ignoring it, and giving it to you, and you can still be angry that the doctorsare idiots. I know you are relieved, and I am sorry if I sound very angry, and evensuprised at your relief. I caught molluscum from the same guy that gave me chlamydia in college....two STD's atonce!! Sex is dirty! This coming from me, a VERY LIBERAL minded person.
CommentHas anyone experienced changing symptoms over time? In the past few months I have gonefrom feeling completely dry and swollen to feeling what seems like one spot that isitching and tender and red all over. It also used to be very uncomfortable to sit, but nowthat seems to be gone. Is anyone else experiencing changing symptoms over time?
CommentTo Laurel and Chris, many thanks for posting. Sharing information is so important.Laurel, I have the low oxalate cookbook and have been trying to stay on it. The one thingthat I really miss more than anything else is coffee. I've tried the low acid coffees, butit still causes me burning. I am interested in knowing how long you have been on the dietand how it is helping you. Chris, thanks for the Bag Balm tip. I have tried endlessointments and this is the only thing that seems to help me. I can't use Vanicream or anydiaper preparation, I am too sensitive, but the Bag Balm seems to really help. Are youdoing the low oxalate thing too? To the lady who takes the Prozac for the pain, how long have you been on it and howlong have you had the vulvar symptoms? I am interested because, I have been prescribedEffexor and it hasn't helped me
CommentHey Laurel, I can get you the phone number for Dr, Gordon Davis if you like. I'll haveit and post it tomorrow. Bye now!
CommentTo Liza again...I am very interested in the connection of herpes being mistaken forvulvodynia. Am I understanding correctly that you did not have blisters (typical symptomof herpes)??? 'Just' burning (and itching?) in your vulvar region?? Did you have cultureafter cultures done as well?? All coming up 'normal'?? I am considering having the POCkittest done just because your post interested me and I'm wondering if this could be what Ihave after all of these years? Or if I'm just grasping...Everything I've read though aboutHerpes says there is usually blistering; Did you have that? I don't. Thanks.
CommentTo Debbie: I started on Prozac at 20 mg a day about 6 months ago. The 20 mg did not help with thepain, but my doctor increased it to 40 mg a day about 2 months ago and I would say about 2weeks into the 40 mg dose I started feeling better. I have had vulvodynia for 13 years and am 42 years old. I have been on almost everymedication listed including Paxil, which did nothing for the pain. I have very baddepression and have even contemplated suicide at times, however I have a 6 year old that Iwould miss terribly. My marriage is a shambles, because I don't want sex or any kind of closeness anymore.This whole thing started because my husband got venereal warts 3 years into our marriage(the doctor said they could lay dormant for a while so that he probably wasn't unfaithful- who knows?), but then my gyn thought she saw some start of it on me. So she used somekind of acid treatment on me and I was never the same after that. Every time I had sex after that I had this burning like a yeast infection, but nodischarge. I went to doctor after doctor who said that it was 'all in my head'. Some guyeven said that I had Herpes, even though I tested negative for it. Idiot!!!!! Anyway, I am feeling better either due to the Prozac and/or the biofeedback.
CommentHello everyone. Lynn, have you been feeling okay? I'm not doing all that well. I wassupposed to be starting the biofeedback method this week, but my husband has been sick andI was unable to go to my doctor. I hope all is well with you. Nothing seems to help thisburning. Even though the Vanicream did not help the burning, it provided moisture. I havecut back on a lot of different foods that I never thought I would have, but I just want tofeel better. Laurel, I have tried to follow the low-oxalate diet for almost a full monthwith no relief. I now think that this will always be a part of my life. I'm tired ofthinking about it and talking about it. In every conversation my husband and I have,vulvodynia is mentioned. I just don't know what else to do. Do you suggest getting off thepill? I have been on the same pill for 5 years (OrthoTri-Cyclen). I just don't know whatcould have brought this on. I keep going over and over in my head, but nothing comes tomind. My last culture came up fine, no yeast. I guess I'm going to try the anti-yeast dietnow. Back to the book store I go! Take care.
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CommentMarilyn, thanks for sharing your story. I'm happy to know that you have found somethingthat has helped you. My problem seems to be food and hormone related. When I eat some ofthe high oxalate foods, I can really feel it. Also, my doctor has discovered that myestrogen levels were very low. He presribed the combipatch and also estrace 1mg. orallydaily. Since the addition of the hormones, I have felt much better. The hint that it couldbe hormone related was that when I would get my cycle I would feel great. Afterwards, thepain would return. So far, I feel good as long as I stay away from the foods that are highin oxalate. Also, my doctor prescribed Lorazepam for days when I am in intense pain. Hefeels that the sedative works directly on calming the nerves anywhere in the body. I take1/2 mg. up to 1 mg for pain when needed ( it also helps you sleep) Stephanie, I have felt like you describe. My poor husband would have to hear about my"problem" every minute of the day and night. Please don't give up on the oxalatediet, it does help. It takes time for your body to rid itself of all of the oxalate acidthat causes the burning. I cannot take the calcium or nag, because it causes me to muchconstipation. I just stay on the low ox diet and use bag balm when I feel dry oruncomfortable. Keep trying and don't give up. You might ask your doctor about theLorazepam, it really helps when you are at the end of your rope. I'll continue praying for all of us.
CommentDon't give up Stephanie C! You can't just start feeling fine after a month on the lowoxalate diet! People in the Vulvar Pain Foundation have gone more than 1 year beforeseeing a change. Give the body time to get used to it. Listen, you are having pain anway,so just stick with it. Have you joined the foundation yet? I owe them for getting me tothe point I am at now. if you only knew how I burned a few years back, I wished most daysthat I was dead, and I am not that kind of person. Are you taking the Citracal? It has tobe timed or may make things worse. Do not self medicate. Please have Dr Solomons test yoururine. Also, I think the anti yeast diet is a great idea. Remember to cook veggies. No rawfoods! Yeast thrive on it. Please report back and let me know how you are doing. You willget better, but time is the most important thing. Be patient and you will see results.Take care and don't give up! laurel
CommentThanks, Debbie. I will continue on with the low-oxalate diet. Maybe some relief willcome along soon.
CommentHey everyone, Just wanted to update on my life. I have been recovering well from my surgery. I have arecheck apointment with my doctor on the 26th. A couple of days ago I started gettingchapped and sore on the left side on my labia. This is on the area where the graft ishealing. I really hope that clears up. Lynn have you ever had that happen? Anysuggestions? I plan on calling the clinic if it dosent clear up in a couple of days or ifit gets worse, otherwise I will just ask the doctor when I get there. I am starting to beable to sit again which is a really nice thing to be able to do. Sex would be even better,but I'm willing to wait just knowing that things seem to be improving. This week has been rough though. My husband hasnt been doing the best job keeping upwith the budget since my surgery. I dont blame him. Most nights he has been comming homeat 8pm working late and running errands and he has been doing all the chores that I wouldnormaly take care of. But I had to borrow $150 from my mom last night to make sure thatour checks dont bouce. That gives us about a week to come up with about $800 to break evenat the end of the month. Still trying to find the hat, I hope theres a rabbit in it. Thishas been very hard on my husband who is working so hard to take care of me and make all ofthis work out. I havent been able to work full time in 3 years. I sure wish you couldcollect disabillity on the B.S. but I guess it would be a miricale just to get our familypractitioners to take this seriously much less the government.LOL. Sorry to complain...itsjust been rough latley. To the marijuana user. I'm sorry I think the reason no one responded the first time isbecause we just didnt have any information for you. I use to smoke marijuana a littlemyself when I was younger and it didnt occure to me untill you posted to think there mightbe a connection. I had vvs before I smoked pot and after and it didnt seem to make thingsworse in anyway to me if that helps any. I didnt smoke it nearly as much as you didthough. Christina
CommentFor Christina. What a hassle it has been for me trying to get disability, actually SSI(supplemental security income). I think after6 months of no work, you have to refile fordisability. Because thet were going to find out I had the fibromyalgia, I had to tellthem. They hate to give disability for FM, because there is no blood test to prove it andit is widely disputed. I really was trying to get it for the vestibulitis, and theydisregarded half the things I applied for b/c of the FM. That pissed me off. So far I havebeen denied once (they hate to give disability to the young), and am waitingreconsideration. If denied again I ahve the option of hiring an attorney who get 25% ofback pay. If we lose, I owe nothing. have you tried also? It is awful! As if this diseaseisn't bad enough! Best wishes and I hope things work out for your family, laurel
CommentThis is my first entry into the guestbook. I have just recently been diag. withvulvodynia by my gyn. He did refer me to a specialist here in the area. I am so frustratedwith this condition and the problems it causes. My heart goes out to those of you who havehad this condition for years. My prayer is that ALL of us can someday be pain free andhave our lives back. I am drawing my strength from God and my Bible. When it gets tooverwhelming ladies, open your Bible and read it. It will bring relief from that pain.Let's pray for a cure for this debilatating condition.
CommentJust wanted to say welcome Belinda. Although there is no cure for the pain, I havefound comfort in corresponding with the others here who know exactly how debilitaing thisdisease truly is, and finding answers to questions that even my own doctors have no clueabout. I think it will be helpful to you. Best wishes, laurel
CommentI haven't 'visited' in a few weeks. I'm feeling so much better these days I just had toshare with you! I've been taking 100mg of Desipramine (an antidepressant) for the past fewmonths. Previously I was taking Elavil (for 1 yr), then got taken off that and put onanti-convulsents which made me very sick. When I was off Elavil, my symptoms got worse.The dr. switched me to Desipramine. I've increased the dosage and am now trying 125mg. Ihad a difficult time sleeping on the Desipramine (I'd fall asleep fine, but wake up in themiddle of the night unable to sleep). I bothered my family dr. on a weekend and hesuggested taking 10 mg of Elavil along with the Desipramine. It works great. I can sleepall night, but it doesn't make me 'out of it' like the higher dosage of Elavil did.Somehow I feel like everything sort of 'clicked'. I'm not completely without pain. But for the past 3 weeks I've felt pretty normal---Iactually don't think about the vulvodynia for long periods of time because it just doesn'thurt. AND, I HAD SEX WITH MY HUSBAND TWO TIMES IN 1 WEEK! YIPPEEE! Instead of the weeklong pain afterward, I had a little bit of 'not feeling quite right' for about 3 hours orso afterward. After that, I felt completely normal! I wish I could say for certain what "worked" for me. I also have reallyfocused on washing with NO soap and NO washcloth---just water and my hand. I had beenavoiding soap, but still using a washcloth. I think the change has really improved thesituation! My own personal belief is that our bodies have the abilitiy to heal. Sometimes we getso wrapped up in having to take antibiotics, antifungals & creams, we don't realizethat we don't HAVE to take anything. In fact, I recently found out that some doctors don'tprescribe for a bacterial vaginal infection! Now, I have to say that I had a bacterialinfection about 2 months ago and I most certainly got on antibiotics right away! But, I dothink that maybe laying off the creams is a good idea. I know I feel the most pain reliefby avoiding contact with the vulva as much as possible. For me that means, minimaltouching with toilet paper, no creams, no soaps or washcloths, no tight clothes andavoiding situations that make me hot and sweaty which seems to make me feel much worse. Anyway, just wanted to share what's been working for me.... -Cheryl
CommentTo Laurel, I just wanted to say-hang in there hon with the Fibromyalgia disabiltyissue.My husband has FM and of course was denied disability by the SS the first timearound.So we immediatly hired an atty. he apparently knew "just" what paperworkto file and the forms he had my husband's Rhuematologist complete seemed to be just whatwe needed.We never even had to appear for a hearing,as our atty. had said is the norm. Wejust got a letter from a judge who had read over everything and ordered the SS toImmediately begin his SS payments and back payments for the year.I do think the fact thatmy husband had worked first in the Air Force, then at his same job for 25 years really hada huge impact on his getting the disability. Even though I still consider him to be prettyyoung to have received it-he's 45 now(was 41 when he filed for it).I'm not sure of yourage or your work history,but great strides have been made in how the SS admin. viewsFibromyalgia.Now if we can get them or anyone for that matter to take THIS VV seriously wewill be on a forward route.
CommentDear Discussion Members, RE: Vulvodynia Awareness in Australia. As a clinician I hadthe opportunity to train and work with Dr Howard Glazer from 1994 onwards. After myinitial work with Dr Glazer I commenced work in a Sexual Medicine Unit in Canberra,Australia with a great Physician who wanted to help women suffering with vulvodynia. As aresult of seeing hundreds of cases we continued to research and publish our findings withDr Glazer. Year after year we would visit together on either side of the Pacific, keenlypursuing our interest, sometimes at a high cost to ourselves, but with a strong desire tofurther develop our understanding of vulvar pain conditions and to treat them moreeffectively, thereby bringing relief to sufferers. In many ways this has preoccupied ourprofessional lives, but as many of you know progress can be slow, but the rewards havebeen satisfying even though we still have some ways to go. This year, partly inrecognition of my work, I was invited to speak at a national conference of Gynecologistson the topic of “Clinical Mangement of Vulvodynia”. This invitation was precededby an earlier national symposium I convened in Sydney in 2000, on the same topic. Morerecently I was nominated by some of the Gynecologists to participate in a nationaltelevision production – Good Medicine, to speak about the treatment of vulvodynia.The program will screen on Australian networks tonight on Channel 9, at 9:35 pm. I wouldencourage all Australian discussion participants to view the program and perhaps providethe TV networks with feedback for being willing to open the discussion. It is possibly thefirst public screening of a program addressing the issue of vulvodynia. Some of mypatients will be interviewed and a live biofeedback session will be shown. I’m hopingto follow this program up with magazine articles, knowing that women’s magazines thatwere previously resistant will be more open on account of the TV program. I sincerely hopethat those of you in the US and elsewhere around the world may have similar opportunities.If our experience can in anyway encourage you in that direction, I will be very pleased.In Australia we have now established a Professional Society specifically interested inVulvar Pain. It consists of approx 40 specialists and will focus on the promotion,education and provision of better care to vulvodynia patients. May I encourage you not toget discouraged, but continue to work at it. I again wish to thank Dr Glazer for the greatwork he is doing in the US and Internationally and to thank the Gynecologists in Australiawho are committed and doing great work with Vulvodynia sufferers. Marek Jantos MA
CommentI just want to tell all of you that there was a fascinating cover article in the NewYork Time's tuesday science section this week about the role of hormone levels inautoimmune diseases. Researchers now realize that 80% of people with autoimmune illnessesare women, mostly because hormonal levels play such a critical role in the body's abilityto heal itself. My doctor, dr. Elizabeth Stewart in Boston, believes many cases ofvulvodynia, are caused by an autoimmune disease in the female body. Although the articledoes not mention vulvodynia, it gives terrific insights into what we might have. I reallyurge all of you to read this article--I think it is a real breakthrough. FRANK, I will get you tonight the address and name of the company that tested myhormonal levels.
CommentLaurel, Thank you. You always have some encouraging words for all of us. I have notjoined the Vulvar Pain Foundation. Really, I don't know what I'm waiting on. Laurel, Istopped taking the Citracal. I know this sounds stupid, but I am tired of taking all thismedicine. I used to never take anything but my birth control. I was hardly even sickbefore now. My blood pressure is up now, and I think it is because I worry so much aboutthis disorder. I had to get on a diuretic to help control that. I'm getting so frustrated.I am going right over to the Vulvar Pain Foundation website and get some information onjoining. My life has just really changed, and I seem to be @ my wits end. What do you meanby timing the Citracal? Maybe I was taking it too close together or too far apart. Whatabout raw vegetables like salad stuff? Thanks for all that you do, and all the informationthat you have given me.
CommentI have not read the article, but I have said for years that vulvodynia should beconsidered autoimmune...that is why I sought a rheumatologist, and thank goodness mydoctor found it reasonable and gave me the referral, so my insurance picked it up.Autoimmune means the body attacking itself, obviously our bodies are doing somethinghaywire. (although I should say that I tend to believe that many autoimmune diseases couldbe triggered by infection...are you sick of this song?...Many rhumatologists buy intothis. There have been improvements observed with schleroderma, rhuematoid arthritis,chrohns, and other skin conditions using antibiotics. Also, diseases previously thought tobe autoimmune have been proven to be infectious, rhutoid heart disease, lymes disease,etc.)
CommentTo D: I'm glad you saw my request, I asked my pharmacist but she did not have aclue.Thanks so much. The diflucan seems to have knocked out any yeast , there is novisible discharge. Still there are the raw areas including a spot on the clitoris. My wifeis really mad at me for not wanting to be intimate but I can't see doing anythingconsidering the condition of her skin. She has finally requested her medical file from theGyn and says she will pursue further treatment. Maybe we are chasing rainbows, I have readof the many ladies here who have had extensive testing done with no resolve. Still I thinkthorough testing for S.T.D and complete blood hormone levels will clear up alot ofquestions. I felt at a loss not being able to offer more constructive advise concerningyour relationship. Things are difficult enough for a young couple without this illness. Inmy mind the most important thing is getting well and keeping your sanity. The stress oflove and trying to keep the other person happy adds to your problems.He will either hangin there and be supportive or he will succumb to other feelings and thoughts. I sometimesfear my wife will want to end our marriage thinking I would be happier with someone else.Too many negative thoughts . Thanks again and best of life.
CommentFrank, I thought it was very interesting that you fear your wife will want to end yourmarriage. I bet she worries about the same thing from you. I assume she wants to have sexto 1. feel normal, and to 2. keep you happy so you won't leave. It is sweet. I wonder ifmy husband ever felt that way. It would have been comforting to know that, to know that wewere BOTH feeling insecure. I would have felt more united with him emotionally. To behonest, I don't think he ever felt like you, you are an exceptional man.
CommentTo Jennifer: Thank you for the compliment. I'm emotional and try to be insiteful.Believe me I did not fit in well with my macho lineman buddies. Understanding what my wifeis thinking and sorting out my own thoughts is a small reward. I want us to survive thisillness together. Sure I'm sexually frustrated, so is my wife. I don't have thoughts ofcheating because I think she would remain faithful if the situation was reversed. I don'twant to take up alot of space here with my thoughts , I just wish kids were raised to bemore respectful of eachother, and I wish as adults we had more time to just stop andreally think beyond the moment. Get a bigger picture of our brief time here. Enough of mydelusions. Maybe your mates have similar thoughts, I talk too much. Bye.
CommentIn response to the response about Molluscum: While the virus is sexually transmitable,getting upset about where it actually originated, or stating that sex is "dirty"is really not helpful to anyone! The virus is shared by skin contact, that is true, but it is most common in children,like chicken pox, pin worm, etc. (and yes I did get chicken pox from my boyfriend when Iwas 25) To get upset about it's sexual transmission is really somewhat fruitless. It canalso survive and be passed on via towels at the gym, swimming pool areas, etc. Like manyviruses, it will run its course and, while it can be treated, it can usually go away onits own. And yes, I'd rather find Molluscum than herpes or warts! My boyfriend has numerous nieces and nephews, and we will check them out. If he playedwith the kids then used the bathroom, and they have it, bam!, it's his then its mine. It'snot necessarily malicious, or dirty, and it's fixable. Another possibility: I've been in contact with doctors more than my boyfriend thesedays, and that's another possibility for transmission. Maybe I should be worrying that, ifwe find it on his skin, that I gave it to him! Anyway, I think we need to remember that there is the "you have it forever andit's going to mess up your life" stuff, then there is the "acknowledge and moveon" stuff. With everything I'm already dealing with (vulvodynia or whatever it is) Ican't afford to get twisted about the fixable. It is very important to be smart and careful about what you do, but we can't live in aplastic bubble.
CommentI agree that the NY Times article on autoimmune diseases is very interesting. You canread it at
CommentWow! So many good issues and supporters out there today. Thank you to R.S. for the infoon fibromyalgia. It is hard enough having the illness, but then a group of people who knownothing about you came along and decide how you feel. That irritates me to no end! Allthey cared about was the FM, hardly the vulvodynia! When I reapplied for it, I blastedthem in a 5 page letter. So I may have burned my bridges, but it felt so good! And I willhire an attorney (I wasn't going to at first) to make a statement, and for spite ofcourse. in my original denial letter, they said that while there was no doubt I hadchronic pain, I still had the ability to lift 10-20 lbs! Most days I can't even sit anddrive, but hey after I drive to work and am dying why not lift 20 lbs? I am sure that willhelp the situation. We have to get the word out about how debilitating vulvodynia andvestibulitis are. Especially to the Social Security Administration. I guess there aren'tenough of us out there yet, so the SSA has little to go on. The FM is just a small factorin the whole issue. There are so many other symptoms I have, and one of the worst ischronic fatigue. I can barely climb my stairs without losing breath and having to sit fora long period of time. I walk everyday (it helps the FM and the v.v.), but the smallest ofinclines and I have to turn back home. But, for some strange reason, I hold out hope thateventually I will find the answers to my illness. I think that they are all connected.Surley, one cannot have all these symptoms and not have them connected in some way.Definitely has to do with my immune system, probably from the thyroid. And to think I justturned 30! I have worked at the same job for 9 years, so I hope SSA counts that assomething. And for Cheryl, I was wondering where you went. Best wishes and I am so happyfor you. For Stephanie C, the citrate did not help me, except at first. Eventually itcaused more burning, even with Dr Solomons timing. But that is not usually the case. Buttiming is crucial. I am glad you are joining the foundation. You will love thenewsletters, and they have tapes of previuos seminars that are great. Jennifer, canatypical yeasts be tested by an allergist in the office? Like when they test for pollen,etc and the areas on the arm turn red to a positve reading? Thanks, laurel
CommentTO MARILYN: You mentioned an acid treatment your doctor applied for warts that seemedto bring on your condition. The acid may be pedophilon (uncertain of the spelling). I hada similar experience, never been the same since... TO LAUREL: I also have that extra piece of skin. The pain has been localized aroundthis area for several years and I believe may have something to do with what I mentionedabove to Marilyn. I actually had it on both sides and I had a doctor who removed the oneon the left because the pain was greater on that side. By the way, the removal, ifanything, made it worse. To the marijauna user : I have used it heavily in the past and had no odd experiences.I can't really say the two are related. To everyone: My discomfort is definitely affected by hormones and my period. I havepain primarily around that time especially the days beforehand and towards the end when itstarts to slow down.
CommentTo the person who wanted to know about my herpes symptoms: I have never had blisters. After doing research, I find that the statistics are about85% of people with HSV NEVER have a "classic outbreak". In fact, many have NOsymptoms whatsoever (those are the ones who infect everyone else!). Mostly, I have burning...like raw skin feeling with salt being rubbed in it. At first,maddening itching..but I haven't had that in over 3 years. Now, the burning. Sometimesstabbing pains in the buttocks, cramp muscle feeling in the back of the thighs. Mostly,the burning is in the genital area and around the perianal area. Antivirals only seem tomake the other symptoms worse (the leg pain). They have no effect on the burning so far.
CommentFRANK--- hormones test Diagnos-Techs, Inc. PO BOX 58948, SEATTLE, WA 98138-1948 TEL: 425 251 0596 i really hope you can buy it straight through them. good luck!
CommentHi everybody. LIZA: I have the EXACT same symptoms! I have the burning (never itching) around all ofmy labia. I have a cramp in my butt and thigh. I also have a horrible burning pain thatruns through my pelvis. I have had the herpes virus for over 10 years. I have had burningand pain for over 4 months. I am going to see my 5th doctor. Have you had this for years?I am so worried that I can't be treated. We were trying to start our family. I am glad that I am not alone. I spoke with one doctor tonight that said I had BOTHvestibulitis and vulvodynia and possibly interstytial cysitis (spelling). What had helped you so far? Thank you, Alison
CommentP.S..LIZA: I just read that you were diagnosed with herpes2 and they said that yournerves were irratated. Same with me! What kind of hope did they give you as far asrecovery? How have you lived with it over 5 years? I feel it has affected my life in only4 months. I am on antivirals, neurontin and tegratrol. I still feel burning and the othersymptoms I already mentioned. Thank you..I am glad to see somebody else with similar symptoms. 2 doctors said stressis causing my problems..go figure!! Alison
CommentHey all. I'm a 19 y.o girl from Australia. This is my first post on this site. I wasrecently diagnosed with focal vestibulitis, over 2 years after my first sexual experience.Im not sure if this is the same as vulvodynia but I need some information on recovery. Iwas told to go on a low oxilate diet, and take calcium citrate tablets, and I waswondering if anyone knows of this diet on the internet?? I know there is a low oxilatecookbook but I'd rather have a copy at home. I was also wondering from some of yourexperiences if my chances of getting better are likely. As you can imagine i'm slightlyoverwhelmed, not to mention scared about this. I'd appreciate any advise. Thanks :O)
CommentTo the person who wrote about MOLLUSCUM. You are right I should not have been sonegative, and I should not have said sex is dirty, I apologyze. It is just that I get veryfrustrated with peoples inability to acknowledge that there are a lot of sexuallytransmittable diseases out there. I want us adults to be VERY AWARE, so we let ourchildren know. The only way to slow down the transmission of the viruses is to useprotected sex, or no sex. Of course, the bacterias are scarry too, but at least they areusually treatable if you are lucky enough to have symptoms. I have been upset many timesby the fact that people, including doctors, seem to be very ignorant of STD's. I agree, Molluscum is better than HPV if I am going to pick. And, I had been askedbefore at this site why I am not very angry at the men that have given me STD's. And forthe most part it is because they were asymptomatic. I myself, have unfortunately had manySTD's...you think I would have learned after the first one to always use a condom, butthen I got one from my husband. It is rampant! I have only been with 6 men, not a highnumber, and I had HIV tests with the last two, including my husband, trying to be carefulnefore having unprotected sex. My reality is I put myself in harms way by having unprotected sex. But, no one hadreally explained to me how often STD's occur, or that they can lead to cancer. Adultsdon't come right out and say, "I had an STD, and it was a nightmare, or still isbecause the herpetic outbreaks can be very painful, etc." It is hush hush, and thatis a problem. I had sex ed three times in school, but some how the message was not reallythere, AND my parents who are very open liberal people only worried about gettingpregnant, and later AIDS. Tell your children. Enough of my soapbox. Again, I am sorry.
Commentto the 19yr old from australia-- to get a copy of the low oxalate cookbook, please goto the vulvar pain foundation web page. you can become a memeber, order the cookbook, andget a lot of info. if you cannot find it, go to the 16th guestbook, and Laurel wrote mostof the foods down in her entry. also, please ask your doctor about biofeedback, and anti-depressants, which retrainyour nerves to stop feeling the pain and burning. check out this web page and the web pageof the National Vulvodynia Association(nva.com.) good luck! i know you will be fine in the end!
CommentThe Low Oxalate Cookbook is also available in many libraries, but I don't know about inAustralia.
CommentHello, I have been reading all of the comments from all of you and would like to tellmy story with the hope that it may help some of you. I was diagnosed with Vulvodynia inSeptember of 2000. I had extreme discomfort and pain for about a year previous. My doctorkept treating me for yeast infections with the cream that you insert into the vagina. Iwas also treated with a steroid ointment. Bad news! Both treatments made the problemworse. I had a biopsy done that indicated a thicking of the whole vulva area which madeeveryday normal activity unbearable with pain. My doctor refered me to another doctor whois an expert in the field of vulva pain (Dr Stanley Gould). He first changed my estroginfrom pills to a lower dose patch and then started me on a masive regiment of antibioticsfor 28 days. Since then I have been on Elavil which was helping untill I couldn't stayawake at work. Also my husband and I had gone to Maui for vacation and I jumped into apool without thinking. Bad news again! Blisters for the rest of the trip. A real bummerfor a second honeymoon. I did however find out that salt water from the ocean is verysoothing...to bad we couldn't take it home with us. Now I am taking 1500 milligrams ofnuerontin and 150 milligrams of Zoloft a day. The left side is cleared up but I still havea problem with the right side and tip of the clitoris. I have faith that this treatment isgoing to continue to work. Also I have found that keeping every kind of chemical away fromthe area is very important. No soap,fabric softner,yeast medications,ointments, perfumedtoilet paper,hot tubs, pools or pantyhose. This condition is certainly a life alteringproblem. But I also can't believe how far I've comein one year. I'm lucky to have asupportive husband and family to help me cope and I hope all of you do to. Good luck to you, Connie
CommentLaural: I havent actually tried to apply for disability, I was mostly just having a badday because finances are so rough. My thoughts where that if I cant get the doctors totake this seriously then I dont have a snowballs chance in hell with the government takingit seriously. So I havent even tried. Untill my surgery my husband and I have been justfine with my working part time. Right now we are having troubles because I havent beenback to work in a month, and we have had all sorts of expenses we didnt count on or didntthink of. It will be even tougher when the hospital bills come in. Usually we make duealright though. I hope everything works out for getting disability for your fibromyalgia. Christina
CommentThanks Christina. It is very hard with this and then along come all the the problemsassociated with it like bills and money or lack thereof! I am in Massachusetts. I guesseach state has their own qualifications for disability. Many in the VP Foundation havegotten it, no problem. Why not call the number and at least apply? I sat down and wrote aletter to the SSA after my appointment. It wasn't so bad. Just the denial. I should behearing any day and I will let you know if they deny me again. But it can't hurt for youto try. If you do get it, it would be nice receiving a check each month. It does get billspaid. After all, life goes on no matter what. Good luck and the best on your recovery.Laurel
CommentHi everybody! I'm posting from Ireland. I have been suffering from vulvodynia for thepast two years.I do not have burning, stinging or rawness. However my pain is intolerable.It began suddenly when I had a bacterial vaginosis infection.I am forty two yrs old and amthe mother of 12yr old twins. I have tried Amitryptiline before and at the moment I amtaking 100mg-150mgbefore bedtime. Very little is known in this country abou vulvodynia.Biofeedback is not an option here. Could somebody tell me what is 'Aveeno? Brand names arenot the same here as they are in America. Any other advice would be greatly appreciated.Thank You.
CommentANNE, aveeno is just a brand name for a company that makes oatmeal based products. Theymake soap and oatmeal powder to put in the bath, etc. I know peopl that got DISABILITY for fybromalgia, almost all of them needed a lawyer. Iremember a few guestbooks back, a woman spoke of how she got disability forvulvodynia...she said that the judge (is it a judge) was so grossed out by the descriptionof everything, that he said "enough" and gave it to her. You actually might havea better chance with non-medical people to get some understanding.
CommentFor the woman in Australia: This is the site with the low oxalate cookbook.
CommentTo Connie, I believe that I have been a patient of Dr. Gould. He was in Florida at thetime. Is he still in Florida? I called his office and they said they he had moved toanother state. He helped me some, although he didn't believe that foods had anything to do with mysymptoms. I can tell you that in my case foods do make the pain worse. Have you tried thelow oxalate diet? It may help you get over the last of your pain.
CommentHi all! I'm so sorry that I haven't been on in a few days. Stephanie C. you asked how Iam doing and to be honest, Everything's going crazy right now! I'm not talking about myvulvodynia- I'm doing just fine there! But just my personal issues. I'm about to get layedoff in 3 weeks. I was offered this new job, but after they check my driving record, theymay not hire me! I just got pulled over today and got another ticket! My 3rd one thisyear! This time, I was innocent and I will go to court and tell the junge my side.Anyways, on top of all that, my ingine is going out on my car and I need a new car soon!All this mess is happening all at once and I'm so pissed! Now I've got to go car huntingthis weekend in my car with the engine dying out! I won't go on about me and my personalissues. I just wanted to check in and let you all know that I may be gone for a while butwhen I'm back, I'll let you all know what's going on. Laurel, sorry girl! I'm sorry for taking so long with that info on Dr. Davis. Okay, sohere is his phone # 602-265-1112. His address is 300 W. Clarendon suite 100 Phoenix, AZ85013 and his web address is www.arizonavulvaclinic.com I hope this info helps you out. Ireally have to go now. I'll chat back in a day or to. Later Christina, I didn't read all the post cause I didn't have time to. But I did read yoursand I haven't forgotten about you. I'm glad to hear you're getting better. But I don'thave time to tell you about my recovery and all that right now. But give me a day or twoand I'll have all the time in the world to tell you all about it. I gotta go now. Sorryfor the rush. But I really got to go. Bye all
Commentit's been about a year since i last viewed the guestbooks. it upsets me so much to readthe comments, some are good, most discouraging. i don't know what upset me the most. thesex and the city stuff (i immediately wrote the producer a letter) even though i don'teven get hbo, the stories of young women just getting the news they've got vulvodynia (V)or they think they might have it and aren't sure. i stopped belonging to the vp foundationbecause the newsletters upset me so much. it was all calcium citrate and oxalate and i'mglad those women have been helped. but i have to say i've had V for almost 10 years. for 8of those years, i've kept a journal - all foods eaten, weather conditions, how i felt, #bowel movements, what they were like, supplements taken, creams applied, blah blah blah -i cannot for the life of me make any connection between foods and pain or anything else.which brings me to diets. i'm glad some women can eat clean and feel better. i've tried.over the years i've avoided everything at one time or another. no yeast, no dairy, nogluten, no oxalates, no nightshades, no meats, no sugars, no fruits...the last straw camewhen i was seeing a so-called "medical detective" in nyc who said to go on anallergy-free, yeast-free, gluten-free, oxalate-free, arthritic-free diet. do you know whatthat left me? water and meat, and a few vegetables. i don't like meat but i tried forseveral weeks. even if i felt better (which i didn't) i just can't eat like that. i admirepeople who can, maybe if i felt better i'd be more inclined to stick with it, but havingdieted like this for months and months at a time over the past decade - i can't do itanymore. if i'm gonna hurt, i'll have my bisquick pancakes, to heck with the wild riceflour and soy milk. i can recall years back, an n.d. put me on 175 pills/herbs/homepathicsa day. he said eat what you want, just take your pills ($600-700 month). so i ate atmcdonalds on my way home - fish filet, french fries and a vanilla shake - you know thenext morning i awoke and felt good? and i eat fast food maybe once a year. but my hope inwriting this is if someone out there can relate to something i've gone through, or savetheir $ and avoid what i've wasted my $ on, its well worth it. V stemmed after antibiotictreatment for skin. cyst like pimples mostly on the left side of my face and neck. 1stdiagnosis, yeast - nothing helped, bacteria - creams hurt, allergy - to what?,virus-liver-environment-chemicals-cfs-oxalates-toxins stored in tissue-weak pelvicmuscles-poor body alignment-bad blood-fibromyalgia-past life exp.- back to yeast and onand on. is it any wonder i'm confused and scared? i was a young woman of 33, now i'm anold bag at 43, the burning flares, constant inflammation and soreness 24/7. mostlyleft-sided. i hold my body stiff because of the pain, have developed bad tendinitis inarms, muscles in legs and hips hard to stretch, not flexible and very tight. i exercise,do my pelvic stuff, jog, eat in moderation, don't drink or smoke. pain level has beenmaybe as low as a 4 in the past for whatever reason, only to flare back up the scale to an8 or 9. i'm also scared of the probiotics, i took a bifidus powder and after 3 days i wasburning to high heaven, i've taken others since without that reaction but some i feel havemade it worse, others no effect. thousands of vitamins, herbal supplements, homeopathics -i'd flare, i'd calm down, i'd flare - no rhyme or reason. contact reflex analysis - don'twaste your time - i spent 6 years with this nonsense, taking all the crap and finding adifferent reflex every time. dr. said i had liver stones, take these pills - 45 pillsevery 15 minutes - so i did, puked out my friggin nose after about 2 hrs and what happenedto the V? bad as ever. he says oh you should have taken this other pill with it, then youwouldn't have gotten sick - give me a break - don't waste your time with CRA. a lot ofpeople mention constipation. this has been a problem also for the past 3 years. stool hardas rocks, like i'm a big rabbit or something and i drink water, eat fruits, vegetables andbeans - no reason for it. so dr. has me taking turkey rhubarb and a Shaklee productHerb-lax - no longer constipated, poopin up a storm, but i wonder if it is making me burn- again the oxalate theory. oxalate tested a little high by Solomons, but normal severalother times. calcium citrate made me burn severely when i tried. mentioned diet earlier -nothing. one thing i did notice was chiropractic. too embarassed to tell him about V, buthe'd work on my back, hook up those muscle stims, turn it on and sometimes if he placedthem on spots of my lower back, i felt the stimulation affect the V which made me thinkthere is something to it being a physical problem as opposed to a biological one. saw arecommended physical therapist, trained in pelvic floor, did it help, hurt - i can't eventell you, like you all know, sometimes its worse than other times, yet its always bad. i'msingle haven't had any kind of relationship in maybe 12 yrs. i'd be so afraid, how wouldyou tell someone, oh i have this little problem with V. who would ever understand, whocould even imagine that such a thing exists? one woman gets cured in a chlorinated pool,another cannot tolerate chemicals, one gets helped by a diet, others don't, some know itsyeast, one supplement might help some, not others. i just feel like i'm not part of thisearth. like i died several years ago and i'm just existing in a shell, observing how"normal" people live. getting married, having children, buying a home, takingvacations, party's with friends, living life. i observe and imagine what it must be likeand it makes me feel bad because i've tried my best to do what i can but its too much forme to handle anymore. the constant soreness i can deal with it, but burning, heat andinflammation i cannot. i contacted the hemlock society because i really felt my only wayout was to kill myself. a woman contacted me back and put me in touch with a dr. who livesin my area but he told me he had treated women with V and had good results. again diet,supplements, thyroid medicine, antidepressants, but i'm trying and feel horrible, is itsomething i'm taking, is it something leaving my body or is it just the nature of V? whoknows? i can't figure it out. all i really want is enough pills to do myself in when i'mready. oral antifungals made no difference. vaginal creams can make it worse. maybe ishouldn't exercise but i stopped that for a period of time too in the past and nodifference. i've had treatment with an acuscope probe - no change - maybe worse. when iwas laying awake last night thinking of what i wanted to say i thought a lot of makinglight of my situation, but i can see that what i've said here may discourage some, thatsnot my intention, because so many women seem to have been cured or made better, its justthat i haven't hit upon anything and i think there must be something wrong with me. am inot trying hard enough? am i crazy for real? what is wrong with me? a program on 3am aboutthe buddhist monks and the amazing things they can do with their bodies throughmeditation. i've tried imagery, now picture yourself lying on a nice white sandy beach andyou hear the waves gently washing ashore in the warm sunlight, yeah but my V hurts likehell, and picture a white light shining down from above, it enters your brain and slowlytravels throughout your body cleansing and nourishing your head, shoulders, arms, and waita minute, my V is burning like hell, oh yeah, the light continues to ....it hasn't helpedme. i keep hoping that when i awake it will be gone, like a bad dream, on the other hand ipray that i don't wake up, just let me die already will ya? use my body for medicalresearch. do an autopsy on my V. find a friggin answer to this hellacious diseasesomebody. to the outside world i'm completely normal, if they only knew. oh your life mustbe so great, your thin (try scrawny), single (who'd want me?), attractive (why do i eventry?), rolling in dough (paid to ama), life on a string. if they only knew.
CommentDear Buttercup: I'm so sorry for what you're going through. I can relate b/c I've beensuffering with Vulvodynia for over 20 yrs. I can't find a pattern to my pain either. I canfeel fine one minute and then be burning badly the next. I'm married and we can't have sexb/c of the excruciating pain. I can't ride a bike, wear jeans, sometimes not underweareither. It doesn't matter what I eat or don't eat either. I was in remission for over ayr. and now the burning is back. I'm depressed too b/c my life is ruined by this disorder.Why can't Drs. figure out what's going on with us? I've said this before, but if I were acelebrity, I'd be on every news show, have articles in EVERY major newspaper in the world,and on every talk show. Believe me, there would be a lot more research going on by now!!!I wish that the 2 of us could get together in person and talk. Maybe we could help eachother cope. You'll be in my thoughts and prayers!!!!!!!!! Try to keep the faith and prayfor a cure.
CommentButtercup, we all understand how you feel. I know I have felt very desparate andhopeless at times. You can post here anytime, and let your feelings out, and you know thatthere are people here who understand. Hvae you tried to see a pain specialist? They aretypically anesthesiologists or neurologists. They sould probably give you an epidural ofcortizone and pain killers (a treatment used for RSD). When I had vulvodynia I desperatelywanted to know the root of the pain, I was not looking to just be out of the pain, but Ithink for you, at least temporarily, you need some relief. If you want info on a doctorthat does this type of work in your area...let me know where you live...and I will try tohelp you.
CommentFor Buttercup: Wow!! I (probably many of us) can relate to the flow of dispair you have shared withus. I'm so sorry you're in such a horrible place! But, at this point, please share the technical bits as well. Have you ever beendiagnosed with anything? Where are you from? What doctors have you been too? I know youmust be so SICK of this but maybe one of us can respond to your information in a way thatwould help. What if we all posted very complete information about ourselves right from thebeginning of the problem in a "just the facts" sort of way? How old we are, how and when our symptoms started, EXACTLY what we have been checkedand cultured for, what doctors we have seen and where they are, and what medicines we haveused. What do you all think?
CommentI want to thank everyone for responding to my post. I think maby I am looking to hardfor the cause of my vulvodynia. It is a relief to hear that no one else on this guestbookhas noticed a connection between vulvodynia and marijuana. I am thinking I may justmention it to my doctor just to get it off my mind. You have all been a great support tome.
CommentWell I guess I will be the first one to start. My name is Jewel, and I am a 27 year oldAfrican American. I was diagnosed with vulvodynia 10 months ago. Before then, I used toget constant yeast infections but was able to get them under control with Diflucan. Iseldom have pain with this disorder only constant burning. I am able to have sex, but Ihave lost the will. I have been married for 1 year, and my poor husband has been here forme. I live in Memphis and have been going to a specalist here. I have NO IDEA what broughtthis about. I can't even imagine. My lifestyle didn't change, and I had the same sexpartner for 5 years. I do feel he has been faithful to me, so I don't know what else tothink. It has been times I have just wanted to cry in front of people, but I didn't wantto be embarrased. This has TOTALLY changed my life. I have tried several creams,low-oxalate diet, anti-depressants, etc. Nothing has helped this burning. The only time Ihave relief is when I am sleep which I wish I could all day, but I have to work. I hopeone day that we can find the "root" to this problem. Any suggestions wouldgreatly be appreciated, but I probably have tried it all. I see a lot of you really doyour research on this disorder. I don't think that I do enough, but I'm so sick and tiredof discussing it with my doctor, husband & family (who really doesn't understand). I'mhoping that one day we can all get some type of relief from this.
CommentYesterday I was diagnosed with vestibulitis. I have been married almost seven years andmy husband and I never have been able to have intercourse. We spent thousands of dollarson sex therapy after being told I had vaginismus (perhaps because of being aChristian?)--all to no avail. Anyway, I can't tell you how I feel to know this isn't allin my head! I am overwhelmed by all the information out here and scarely know where tobegin. Your suggestions about the most important things to know and what to read firstwould be appreciated greatly.
CommentSomeone was asking about the low oxalate diet a few days ago. Here is a web page thathas an exerpt of the foods from VPF cookbook. http://www.branwen.com/rowan/oxalate.htm Also, take this with a grain of salt, but...I've been eating a lot of bananas lately,and I've been feeling a little better. They aren't on this list so I went searching tomake sure they are low oxalate. They are, but I also found that they help body rid itselfof oxalate. These are from a kidney stone sites: Foods rich in magnesium and vitamin B6, likebananas, are used by the body to convert oxalate into other substances. Bananas are high in vitamin B6, which helps the body dispose of oxalate harmlessly.
CommentThank you for the info!!!!!!!!!!!! I could not locate Dr Davis' website. Hope thingspan out for you. When it rains, it pours doesn't it? Sit tight and things will fall intoplace. laurel
CommentThe website Lynn gave for Dr Gordon Davis is very informative, and I think that itshould be read. While there is not a cure for the disease, it gives a lot of goodinformation, and does talk about splitting in the 6 o'clock area (for Frank). I just wishthis man was in the New England area, as it sounds like he has had a lot of experience inthe field of vulvar pain. The site is www.arizonavulvaclinic.com and then clicking ontowhat else? ... vulvodynia. Take care, Laurel
CommentHi...I just wanted to post my new e-mail address just in case anyone wished to get intouch with me (regarding) Active Release Technique (or anything else). You can refer to mylast posts... Take care all. Tam
CommentTo Laurel: Thank you for that great site. My printer got stuck on page 27 of thirty.Dr. Davis has compiled quite a article, certainly the most complete I have ever readconcerning Vulvodynia. I will need some time to digest all of it and I highly recommendeveryone read it. I did find one contradiction so far. The Dr. mentions as do some of theLadies who post on this site the avoidance propylene glycol. I think it is a preservativelike in anti-freeze, anyhow later in the article he says to use astro glide or KY Jellyinstead of vasilene. They contain that substance. I have read the labels on all theselubricants and they all have it. If it is such an irritant why don't they find analternative. I still think the article is fantastic, this guy has not ignored the problem.Please visit the site and check it out.
CommentLaurie, I am glad you finally KNOW that it is not all in your head. How awful tha theyblamed it on your Christianity. I hope this site is helpful for you.
CommentFrank B. - Where did you find the 30 page article? I went to the site, pickedvulvodynia as a topic, and it brought up a bunch of videos to open. Where was the article?Thanks
CommentButtercup: I have not had V. for as long as you have (only 4 years) BUT I know exactlyhow you feel and I planned to end it all also a few times. I had set dates and the EXACTway I was going to do it too. But I am feeling a little better now and I am glad i didn'tdo it. I know you must be going out of your mind with the pain but PLEASE DON'T GIVE UPeven though you have tried all of that stuff. There seems to be a renewed interest inwomens health right now and there are more studies than ever on autoimmune diseases, newideas on bacterias and pathogens and more people taking us seriously than ever (eventhough Sex and the City DID NOT take it seriously at least the word "vulvodynia"was said in the mainstream media). I agree with Jennifer than you just need relief fromthe pain right now and not necessarily the cure. You said your pain has been as low as a4. So there are times when you can feel less in pain and there is a reason why even thoughyou don't know it yet. Please keep researching. Stay on this guestbook. There is more andmore practical info everyday that is leading to help for us - I CAN FEEL IT!!! All of thearticles and products that are mentioned here are steps to US figuring out what is goingon. Keep venting here...it helps deal with the pain!! If you want to vent to me personallyjust let me know - I will give you my email address. We are all here for you, you are NOTalone. Hang in Buttercup.
CommentI can't get to Dr. Davis's website!! I get a technolgy firm or something. Could someoneplease give me the exact address??!!! I am very interested in reading this info. Thanksvery much!
CommentFrank, I wholeheartedly agree. This particular doctor has come the closest I have everseen to identifying the exact causes and possible treatments. I love the fact that for aman who has never experienced the pain of vulvodynia, it seems as if he knows what we aswomen are feeling. He has obviously taken the time to categorize each person's symptoms,put them in a particular group, and treat accordingly. Very time consuming. All of us onthis site have some form of v.v. or vulvodynia, but our symptoms are all unique in someway. I like the fact that Dr. Gordon will treat each individual differently. Not all of usrespond to the same treatment. He is clearly educated on the issue, probably from years ofgathering information from sufferers, and no doubt years of trial and error. But it seemsas if he is as close as anyone to discovering a future cure. Today I made some progress. Imade an appointment with Dr Elizabeth Stewart in Boston for the end of the summer.Tomorrow at my request and the info from Dr Gordon, my GYN and I decided to try theNizoral for a month to try to kill the yeast in my body. I am praying that this helps, butit gives hope nonetheless. Best of luck to all of us (and our families and loved ones whosuffer just as much) in a cure soon. Any patient of Dr Stewarts, has she helped you atall? Thanks, Laurel
CommentI couldn't find the 30 page article on Dr. Davis's site either. How did you guys findit?
CommentThe web address is http://arizonavulvaclinic.com. Once i got in I went to articles by the Doctor, that is where I found the one onVulvodynia. Try again it is worth the effort. I think my wife will read what I printedlater tonight. She got a few pages of her records from her Gyn. They charged her almosteleven dollars to copy and send twenty or so pages, that's their way of saying thanks forbeing our patient for ten years. Since taking the Diflucan last week she is still yeast ordischarge free, unfortunately the raw areas are still there including the spot on herclitoris. This has got to be one of the more cruel illnesses.
CommentThanks Frank. I found the article and copied it. I agree that it's the most informativearticle I've seen on Vulvodynia. I wish there were more Drs. like Dr. Davis. I hope thatyour wife and the rest of us will find some relief very soon. Sue
CommentJennifer, Thank you for the explanation of Aveeno. I am posting this at 04.00a.m.!Ihave just spent a very long time printing Dr. Davis's epic. It is really thorough.
CommentSince being diagnosed with Vulvodynia last Dec. 2000 when I was about 3 monthspregnant, I decided to try safe ways of relieving my rawness, blisters, pain, etc. that Iexperienced for about 2 1/2 years. I read many of the entries, cried a lot, and did thefollowing: 1) no underwear at night 2) wash underwear in Ivory Snow/Dreft (separately) 3) appliedPURE ALOE VERA AFTER SEX (and for days afterward if I still had burning) 4) no shower buffor scented bath gels (I used to use Bath & Body Works stuff for years) -- only Ivoryor Dove soap and not applied on the area 5)no colored toilet paper - only white 6)noshaving bikini area with anything other than Dove or Ivory soap -- no Barbarsol (sp)7)applied KY jelly EVERY time before sex I must say that I have been 90% better for the last several months. I feel like a newperson. I used to cringe at the thought of sex, how sore I would be for days after, butnow it's been somewhat like it used to be. Someone had mentioned (approx last Nov-Feb)that ALOE VERA really made a difference in their life, so I tried it. I used Fruit of theEarth 100% aloe vera gel (pure - no color added) and I also feel that it really worked amiracle for me. I hope that doing these things has really helped me and that I am not justin some type of "remission". I'm having my baby the day after tomorrow and hopethat symptoms don't return after wards. It seems to me that all my problems began after myfirst baby was born. We'll see, I guess. Any other success stories out there that usedALOE VERA ???
CommentHi all. I'm finally back! I have not read most of these postings since the 18th. I'veread only a couple and that's it. I've been busy as ever trying to get things done andall. I just want to update you all on my condition and answer a couple comments. First off,I'm doing just great! As long as I remain on this low oxolate diet, all is going justwell. But there is one problem; I seem to get constipated every other week for the past 5months( since my surgery). I've been taking some stool softner laxatives - just 1 pill aday every other day til the constipation goes a way. That helps a lo, but when I try topass a bowel, it'll hurt afterwards. It'll hurt for about 1-2 days off and on. But when Iget constipated, I try to eat much of anything and only drink plenty of water. So that'swhat's going on with me now. I'm constipated again but it seems to be going away. To Staphanie C. I don't know what to tell you. The creams not working, the diet isn'tworking, I just don't know! Laurel mentioned that it takes a while for your body to getuse to the diet. I think it only took my body about 1 month to get use to it. It's workingjust fine for me. I don't know how severe your case is but if you are not getting anybetter, perhaps you should try having surgery.
CommentHi Christina, Good to hear you're doing fine. To answer your question, I'm not surewhat you mean when you say that your skin was chapped. I don't know what you mean by that.The only thing that I can tell you is that, well the surgery I had was a partialvulvectomy. Part of that surgery consisted of him cutting open the top left and right sideof the vulva and he removed some tissue out and then he stitched it back up. Both thoseareas where hurting a lot at first and it was red and swolen. But the doctor said it'llclear up in due time, and it has cleared up about 1-2 months ago. The other part he cut meat is in the perinium to remove those glands. That doesn't hurt no more. The only time Ihave pain is when I eat some irritating food. Then I'll only hurt underneath my clitoris.And I'll hurt all around my vulva when ever I pass a bowel when I'm constipated. But thepain there is a different pain.It's not as great as the pain I'll get if I eat irritatingfoods. That's all I can tell you I guess. Also, my surgery has been a successful one andI'm very thankful for that. But of course, the surgery can't do it alone. You have to havea good diet, stay away from irritating fragrances and all that. But I tell one more thing.The greatest pain I've had with this condition, has been cut out and I'm so happy forthat. I hope all goes just as well for you. I have to go now. I'll read the postingsperhaps tonight and then get back with everyone later. Bye now
CommentHi Christina, Good to hear you're doing fine. To answer your question, I'm not surewhat you mean when you say that your skin was chapped. I don't know what you mean by that.The only thing that I can tell you is that, well the surgery I had was a partialvulvectomy. Part of that surgery consisted of him cutting open the top left and right sideof the vulva and he removed some tissue out and then he stitched it back up. Both thoseareas where hurting a lot at first and it was red and swolen. But the doctor said it'llclear up in due time, and it has cleared up about 1-2 months ago. The other part he cut meat is in the perinium to remove those glands. That doesn't hurt no more. The only time Ihave pain is when I eat some irritating food. Then I'll only hurt underneath my clitoris.And I'll hurt all around my vulva when ever I pass a bowel when I'm constipated. But thepain there is a different pain.It's not as great as the pain I'll get if I eat irritatingfoods. That's all I can tell you I guess. Also, my surgery has been a successful one andI'm very thankful for that. But of course, the surgery can't do it alone. You have to havea good diet, stay away from irritating fragrances and all that. But I tell one more thing.The greatest pain I've had with this condition, has been cut out and I'm so happy forthat. I hope all goes just as well for you. I have to go now. I'll read the postingsperhaps tonight and then get back with everyone later. Bye now
CommentOne more thing guys, can anyone recommend a good car for me to buy? My engine just wentout and they said it'll cost $2500-3000 to get it fixed. I'm going to buy a brand new car.I'm thinking about a Dodge Neon or Chevy Cavelier. I got to go now. Bye
CommentHi everyone, so sorry to hear about those of you still suffering with this horriblecondition. I've about had it with the whole thing. Seriously comtemplating suicide afteryet another treatment has not worked on me. Some background, I was a virgin when firstmarried, had one year of normal happy sexual relations and then suddenly with noexplanation....vulvodynia crept into my life. That was 13 years ago and I have been toover 20 doctors and been given every treatment you can find on this board and then some. 5years ago I got severe ovarian cancer (my oncologist feels that this was due to all thetopical steroids, and other drugs that I was bombarded with as we have no history in thefamily and I have never smoked or drank). Had to have emergency hsterectomy and chemo tosave my life (wish I hadn't now.....what life??!) Now I am 100 times worse. The pain isexaccerbated by the fact that my vulvar tissue is so extremely dry. I take the highestdoes of estrogen therapy but still so dry it's unbelievable. Why do all the estrogencreams, vaginal lubrication creams and products like canicream contain alcohol? I can'teven use them....they sting my raw skin so badly that I almost end up with 3rd degreeburns...then my skin is even dryer. I can barely walk. I don't know if anyone else hasthis problem but when I walk it feels as if my vagina doesn't walk with me. It is so dryit literally feels like the walls are chaffing each other and I come home to dab up theblood and pieces of shed skin. I haven't sat in months...way too painful and even lyingdown hurts. I stand in one place for so long that my legs are cramping, swelling and goingnumb. The latest thing I tried was accupuncture....I actually got worse. They say the lordwon't give you more than you can bare....it was more than I could bare 6 months ago. I tooam married with a very supportive husband but I feel guilty and often beg him to leave meand get a new life so that I don't feel like I'm ruining 2 lives instead of just my own.He is a musician and has girls all over him all the time. I'm sure he would have noproblem finding a replacement. I feel I am only living for my family members but notreally for myself. They can't understand why I don't want to attend family barbecues andevents....and tell me just to take a tylenol and join the fun (will they everunderstand....how could they). I'm not afraid if dying....just of living another day withthis excruciating pain and dryness. Am I the only one who has such incredible dryness. Ifigure I'm about done with this whole mess. Maybe there's another life for me after thisone. The physical and emotional pain has taken it's toll. I really hope one day they canfind something to help women with vv, so that hopefully the young girls of today willnever have to experience this hell. Good luck to you all.
CommentHi everyone, so sorry to hear about those of you still suffering with this horriblecondition. I've about had it with the whole thing. Seriously comtemplating suicide afteryet another treatment has not worked on me. Some background, I was a virgin when firstmarried, had one year of normal happy sexual relations and then suddenly with noexplanation....vulvodynia crept into my life. That was 13 years ago and I have been toover 20 doctors and been given every treatment you can find on this board and then some. 5years ago I got severe ovarian cancer (my oncologist feels that this was due to all thetopical steroids, and other drugs that I was bombarded with as we have no history in thefamily and I have never smoked or drank). Had to have emergency hsterectomy and chemo tosave my life (wish I hadn't now.....what life??!) Now I am 100 times worse. The pain isexaccerbated by the fact that my vulvar tissue is so extremely dry. I take the highestdoes of estrogen therapy but still so dry it's unbelievable. Why do all the estrogencreams, vaginal lubrication creams and products like canicream contain alcohol? I can'teven use them....they sting my raw skin so badly that I almost end up with 3rd degreeburns...then my skin is even dryer. I can barely walk. I don't know if anyone else hasthis problem but when I walk it feels as if my vagina doesn't walk with me. It is so dryit literally feels like the walls are chaffing each other and I come home to dab up theblood and pieces of shed skin. I haven't sat in months...way too painful and even lyingdown hurts. I stand in one place for so long that my legs are cramping, swelling and goingnumb. The latest thing I tried was accupuncture....I actually got worse. They say the lordwon't give you more than you can bare....it was more than I could bare 6 months ago. I tooam married with a very supportive husband but I feel guilty and often beg him to leave meand get a new life so that I don't feel like I'm ruining 2 lives instead of just my own.He is a musician and has girls all over him all the time. I'm sure he would have noproblem finding a replacement. I feel I am only living for my family members but notreally for myself. They can't understand why I don't want to attend family barbecues andevents....and tell me just to take a tylenol and join the fun (will they everunderstand....how could they). I'm not afraid if dying....just of living another day withthis excruciating pain and dryness. Am I the only one who has such incredible dryness. Ifigure I'm about done with this whole mess. Maybe there's another life for me after thisone. The physical and emotional pain has taken it's toll. I really hope one day they canfind something to help women with vv, so that hopefully the young girls of today willnever have to experience this hell. Good luck to you all.
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CommentTo Jennifer, I've been doing a lot of research for the past 3 hours and I've beenlearning about HPV. There is suppose to be a treatment for it called"Beta-mannan". Have you or anyone heard of it? It says that there's a 95% chancethat it'll kill the HPV if you have it. If anyone knows anything about HPV of thistreatment, please let me know. I was on Yahoo and just keyed in the keyword HPV and then Ijust clicked on the posting that said it was a treatment for HPV. So I guess for anyonewho wants to know more, just go find out more. I got to go guys. Please anyone withinformation, respond! Thanks!
CommentTo Lynn: I read about Beta-mannan months ago while researching H.P.V. . There is a siteAlotek .. just type in beta-mannan.com and you will get there. The stuff is a concentrateof Aloe-Vera plant, supposed to work miracles..Sounds too good to be true. To Shae; soundslike you have been through a nightmare and it is still not over. There is no fairness orreason for what you have been through and those who don't suffer chronic pain just don'tget it. You mention your hopes that in the future women will not have to suffer from thisillness, my hope is that you continue to find the strength to go on. I don't say this tobe " Deep " but where there is life there is some hope. Maybe this Dr. Davis inArizona can offer some help, or maybe you can get some better pain management locally .Please don't give in to the pain just yet. The older I get the less sense life makes but Iwant to be around long enough to figure it out. Good question as to why they use alcoholin a substance meant to sooth. I know it is a preservative like proplyene glycol anotherirritant. Don't assume you are ruinning your husbands life either. Given the choicebetween a sex life with no problems including a partner with a great body and stunninglooks or a life with the lady I love, there is no tough decision to make. Give yourhusband more credit, like myself he stays not out of guilt ,dwelling on what he is missingout on. We stay because we love you, don't take that away. At the risk of offending thosewho do not believe or have given up on the thought of God I will pray you get reilef fromyour pain and enjoy a better quality of life. It is six o'clock in the morning here and mywife is still sleeping I'm going to give her a big hug... Priceless...........
CommentHello eveyone. I would like to invite you to my web site which I opened up about 5months ago. I have just made some major changes in the site and I have included a sectionon My Story (IC, Vvs, Pudendal Neuralgia, Chronic Intractable Pelvic Pain, to name a few).I am 47 and I have not had sex since 1996. I will not be able to for the remainder of mylife as all treatments have failed. This is called MEDICAL CELIBACY and that is what myweb site is dedicated to. My goal is to offer a safe place for other "Medcels"to support each other and network and share coping skills as we live a "sexless"life. The site is open to men and women, married or single. Some of the stories are justheartbreaking, as are these on Dr. Glazer's site. I also have an extensive Links Page withresources and referrals. (Dr. Glazer's site is listed as one of the Links). I have postedhere many times and I was on the e-group but became too overwhelmed by the volume of email. I can't sit for long periods of time at the computer -I'm sure you can all relate tothat. My site is: MEDICAL CELIBATES NETWORK, OR MCN: There is also a brand new web site that just opened June 1 for SINGLE PEOPLE. It iscalled PLATONIC PARTNERS. This was formed to assist those who cannot have sex but stillseek a loving, close, and meaningful MARRIAGE. There is a careful screening processinvolved to keep out the "looky-lou's" and the curious. If anything, this siteoffers that wonderful 4 letter word; H O P E. You can reach PLATONIC PARTNERS at: I hope this info is helpful to some and please come by and visit my web site. You maypost a message on my Message Board/Guest Book anonymously, if you wish. Wishing you many pain free minutes, hours, days and weeks. Medcel-Siena
CommentThanks all for your help...i found the book in a library. I dont know if it is justAustralia but its not very accomodating for this. Now im having problems finding thecalcium citrate tablets. Owell. I'll get there. Thanks again and goodluk to all. I cantbelive how many people have this. Its amazing. Makes me feel so much stronger to know imnot alone, and considering some of these stories, I'm quite lucky that i've been diagnosedso young and theres so much info out there about it. Thats encouraging i guess xox
CommentLynn, I'm sorry, but I really do not know much about treatment for HPV. I do know thatthere is some sort of chemical/acid, and I hate to think that women have that put on them,whenit is not necessary....which brings me to this point...you still do not know that iswhat you have. When I sia that HPV needs to be taken seriously, I did not mean to upsetyou. Wait for the next PAP. Be sure not to have sex several days before the PAP, and if itever comes back positive, and they do a biopsy, be sure to have the DNA test before you doany treatment. My main point is to avoid treatment until it is trully confirmed that youhave HPV. Strangely, I am afraid that you are reading a lot on this HPV treatment thingand possibly upsetting yourself? I don't want you to get more wound up. (I say that isstrange because I am always the one telling everyone to read). I had a strong reaction toyour doctorsoffice, because the nurse said so many ignorant things, and your doctor seemedto be dismissing you, instead of talking to you, and adressing your fears. Wait for the next PAP, don't jump the gun. Also, most doctors now believe that HPV doesnot cause vulvodynia, and I tend to believe that as well.
CommentHello, I am looking for any information about finding nonlatex nonlubricated condoms.
CommentFirst I want to thank you guys for telling me about that informative artical from Dr.Davis. I saved it and will print it out later. Laural: How do you apply for disability? Do you need a letter of referal from a doctor? How doyou go about it? Lynn: My issues havent gone away yet, but I am thinking it may just be a vaginal infection. Iwill ask the doctor when I go in to see her on Tuesday. I started spotting a couple ofdays ago from a missed BC pill. That just made things worse. Yesterday I had to just siton the couch with nothing on from the waist down and let myself air out with a fan. I wasjust plain sore and sticky. Shae: I read your post and my heart goes out to you. It sounds like you may have AtrophicVaginitis complicating things. Estrogen replacement would be the right treatment for that.You can get Estrogen cream compounded through a compounding pharmacy that mixed withsomething other then alcohol. There is a gal on one of the list serves I am on that canttolerate the Estrace or Premarin ether because of the alcohol. Also, has your doctor triedthe vaginal Estring? It is a vaginal ring that secreats estrogen continuously into thevagina. I use both that and the Estrace cream, but then the alcohol is not bothering me. I sm still having trouble with our finances, on friday our radiator whent out in ourcar, and I had to borrow another $500 from my parents. They are getting really sick ofthat. It always seems like financial issues come in clumps. Well the clumpping needs tostop so we can catch up! I still have the hospital bill to pay when that comes in themail. Christina
CommentI noticed within the past few day's postings at least three poeple mentioned pain onthe left side, or more severe discomfort on the left. I would have to say the same thingfor myself. Just noticed this small trend and thought it was worth mentioning.
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CommentHow do I post a question regarding vulvodynia to seek information on treatment?
CommentHi, I just found your web site and guestbook. I have been scrolling through the entriesand I wanted to share my story. Approximately 10 months ago I went through an extremelystressful period in my life. I started loosing weight and had several yeast infections. Atthe first sign of the yeast infection I saw my GYN. I had already started over the counterantifungal medication (Monistat). However, things continued to get worse and I triedeverything out there and Diflucan. Eventually the yeast was erradicated, but thevulvodynia was horrible. My doctor and two others after that were unable to correctlydiagnose my condition. I went through painful GYN exams for every disease immaginable,biopsies, and steroid creams. Everything came up negative and nothing worked. About threemonths ago I found a physician through Johns Hopkins Hospital who specializes in VuvlarPain. His care and concern has helped tremendously. I am on several different medications,including a tricyclic anti-depressant, sterin/lanolin cream, clariton, and sitz baths. Inaddition to the medications, I am also going through physical therapy. Overall, I amfeeling much better; some good days and some bad. My story is actually much more detailedthan this, but for the sake of space I have condensed as much as I can. My main reason forposting this is because the psychological effects as a result of this have been extremelydamaging and painful. I have always been very upbeat, optomistic, and care-free. Now, Ifeel at times that I am among the living dead. I am not suggesting that I want to die,because that is not so. I want very much to live, get married, have babies, and so on. Butthis has taken a huge toll on my life. My female friends think this is in my head, myemployer thinks I am crazy, and I fear getting into a realtionship because what man wouldunderstand this condition (I was diagnosed with Vulvar Vestibulitis). Does anyone outthere have any encouraging words or stories they would be willing to share? I wouldgreatly appreciate your time, words of wisdom, support, and knowing that I am not alone inthis battle.
Commenthi guys! My 2nd day on Nizoral (much stronger than the diflucan or nystatin). Much tooearly to say if ity is working but the burning is less severe. I hear that if it doeswork, after my 30n days are up, symptoms may return, especially if sugar is in the diet(OUCH! I love the stuff!). But a small price to pay. If the symptoms do come back, I mayhave to take a diflucan once a week for a long long time. But it has cured many who have achronic yeast problem. If it does work for me, I will post so it can help others. I thinkthat a lot of you will notice more burning after something high in sugar is consumed. Thatis the connection I made. Christina, I think the website is www.ssa.gov, but I am not sure100%. Once you log on, you can click on to disablilty. I got the 800#, and the woman gaveme a telephone appointment. I had to be home at a certain time, and they did callpromptly. The woman took all of my info and sent me information to fill out. I got all ofmy records, but if you don't they will send to your docs for them. I also wrote my ownletter stating how debilitating it was on my life. I also had close family and freinds andan employer do the same. This helps. Also, Dr Solomons even wrote a wonderful letter forme! I sent everything in and the waiting is usually 3 months. I think it would be worththe effort to do. I went to the office after the phone appointment with all my records(they ask you to bring in some financial info) and they took some more info. It really isnot that hard, so I urge you to do it. I have no doubt that you would probably getassisitance, especially with the surgery. And you deserve to recover without having toworry when your next bill gets paid. Good luck and let me know how you make out. laurel
CommentTo Kim, It was so long ago that I had that acid treatment, I have no idea what it was and Inever went back to that doctor either. Sorry.
CommentThat is interesting because my pain is definitely and always has been on the left side,not the right.
CommentThanks Laural:) I will check out that web site and see what I would need to do. I hate to do it unlessI have too, I rather earn it myself, but its just really rough right now finacially andits not fair to my parents to have them keep bailing us out like this. I am still hopingthat we can get out of this situation on our own. To the person who asked about non laytex non lubricated condoms: What I used for a long time was sheep skin condoms. Unfortunaltly they are lubricated,but not with nonoxinol 9 or anything icky like that. I have a laytex allergy myself andthease helped a great deal. They wont protect you from STDs and they are not that good atpreventing pregnancy, but they will keep your partners semen from burning your vulva ifthat is what you are needing them for. Once I found those I no longer had to sit and soakin the bathtub after sex (on the good days when I could have sex). Christina
CommentChristina: I know what you mean. But you are ill and deserve to get well, just likeanyone else. And if you feel that it is like receiving charity (or embarassing), thenremember that a large chunk of money was deducted from your paycheck for this exactreason. It is time for them to pay you back. You have put in many years of hard work, notto be cast aside. That is the way I see it. No one should ever feel bad for getting sick,especially when they feel bad enough as it is. Just get better for us. :o) laurel
CommentThere are non-latex condoms that are not sheepskin, I will find out a brand name frommy sister (she is allergic to latex). My pain was much worse on my right.
CommentAVANTI condoms are made with polyurathane (sp?). They are the only thing I use and I'venever had any problem with them.
CommentThanks Laural. I need to hear that. I just feel so helpless about the situation. I seeour finances go in the toilet and all I can think is that we wouldnt be in this situationif I could work full time. At the same time I feel that it isnt fair to an employer tocommit to working full time when I know that I am going to need all this time off fordoctor appointments in another state as well as doctor appointments hear for IBS andgastral reflux. I'll see my husband call in sick because he has a cold. I wish I couldcall in sick because of a cold! Christina Bunny
CommentYour welcome Christina! I couldn't help but ask, are you fibrolmyalgic or have athyroid? I, too, have IBS, and bad. Although I am much more constipated than havediarrhea. My thyroid doctor says that the medication can take up to a year or more beforeit works. Boy, is that an uncomfortable feeling to feel so bloated and frankly, fat. Callin for a cold? If life were that simple! HAHA. Because of the vulvodynia, I have anextremely high pain tolerance. I can have dentistry work done with no anesthetic. I had myupper arm broken in 3 places, and they prescribed Vicodin. I never took even an advil andI had a cast for months. The last time I took an aspirin or ibuprofin was probably 6 yearsor more ago. I am sure that a lot of you are the same. One reason I won't take any kind ofpainkiller is because if it is working and then I sit the wrong way or too long, I amafraid that the pain will be worse when it wears off. I was supposed to have a nerveblock, but that just masks the pain. I refused because it was not fixing the problem inthe long run. Hopefully this Nizoral will do something. It is my belief that we hurtbecause there is an infection of some kind in the body, like over use of antibiotics ourimmune system isn't equipped enough to handle. I tell you that Flagyll is the root of myproblem. I was never the same after that. I hope this gets rid of the yeast in there.PRAY! Talk soon, Laurel
CommentTo the Fibromyalgia Sufferers: My sister-in-law suffers with this auto-immune diseaseand she is trying a new supplement called Bio Choice. You can check it out atwww.biochoice.net I don't know if it will help but I know some of you are very bright andwill have some thoughts on it. I try not to get taken with all the promises and promo butfrom time to time I will try something new.Best of luck and please let us know yourthoughts.
CommentTo Frank & Everyone: Still feeling relatively normal (4 weeks now??!!!) Still estatic. Frank, I really feel for what you and your wife are going through. I'm going to sharewhat I find helpful in the hopes that it helps you and others. First, as far as sex goes, I think you really need to listen to your wife. It soundslike she's saying that she wants some intimacy and that you don't because you don't wantto hurt her. I think you need to find intimate things you can do together that don't hurt.I know, easier said, than done. Having had vulvodynia for 15 years at the onset of mymarriage, I really empathize. I've been there. My specialists at U of M hospital in Ann Arbor are extremely adamant about avoidence ofcreams, particularily steriod creams. They want me to 'leave it alone!' Maybe you couldtry NOT using creams. But give it some serious time--like say 2-3 weeks before ANYimprovement. Avoid contact with the area as much as possible. No aggressive wiping when using thetoilet. A few pats or rinsing with water and then blow drying would be best. When washing, DO NOT use soap. DO NOT use a washcloth. Use your hand and water. I can'tbelieve the improvement I saw from just doing that! If Elavil is making you comatose, try using Desparimine. I can't believe how muchbetter I feel on that. It's still a tri-cyclic antidepressant, but it does not make you sotired. The tri-cylcic's interfere with the brain's perception of pain. By breaking thepain cycle and sustaining that for a period of time the hope is to re-train the body. Ithink that so many of us have been over-treated with antibiotics, anti fungals and creamsthat our bodies are just going haywire. I have been tested for atypical yeast by Dr. Sobel in the Detroit area. It was veryinformative and helped immensely (this was 5-7 yrs. ago). When I went to him, I DIDconsistently test positive for yeast at my regular Gyn. The difference is that I was beingconstantly treated for Candida and I didn't have that type of yeast. So I think it may bepossible that Frank's wife doesn't have yeast if the Dr. doesn't show positive for that. I also double rinse my clothes and use a dermatologist tested laundry soap. I can't emphasize enough how much the washing without soap and washcloth and the'leaving it alone' philosophy have helped me. Hope this helps someone.
CommentHi Cheryl. I am so glad you are doing much better. I think that the bacterial infectionyou got may have helped you in the long run. That is, you got the yeast infection andmaybe the medication for that cleared up most of the problem. Perhaps the next time youfeel something coming on, diflucan or one of those antifungals will get rid of it. Let meknow if you notice a difference. I feel the NIzoral is helping. I have not even had aburning bladder in the last 2 days, and that was something I had just become accustomedto. I don't like to get hopes up, but I do feel a difference. And the smallest ofdifferences makes things that much better! All the best, laurel
CommentRegarding pain more on the left side than the right...Unless you are absolutely certainthat your symptoms are gynecologically (sp?) related (from proof of vaginal (bacterial)cultures)...get yourself checked out (physically) by a chiropractor and/or a physicaltherapist! They will check out your body alignment...I hurt my left side of my hip manyyears before I found the connection to my burning vulva! As wacked as that sounds, pleasetake it seriously. Everything is connected down there.
CommentLaurel, I know a woman who had vulvodynia before any doctors were diagnosing it. Shehad it for 2 years and finally went to a doctor who had just read the "YeastConnection" when it was new. She took Nizoral for 2 months and it cured her. Do youhave a white coating on your tongue? I'm sure my vulvodynia is related to yeast. Mine alsostarted after Metro Gel, which is topical form of Flagyl. Also took antibiotics duringthat time. I had 3 yeast infections in 6 months before this started. I never had onebefore. I know eating foods with sugar really aggravates it. Was in remission for 3 years.Started eating a lot of sweets again, had a baby, and got a Depo Provera shot, which Ithink all started this again. I am going back on the anti candida regimen. Will try tofind an allergist or holistic Dr who treats candidiasis who is in my insurance network,since I don't have much money these days with a baby. I paid for allergy treatment beforeout of pocket. I also use Zostrix topically which really helps. The pain and burning stayaway for about 4 hours with it. I don't apply to the mucous membranes. Only to outerlabia, and it still works. Diflucan didn't do anything for me.
CommentHi everyone - I only posted here a few times, but I have a question. I read some posts aboutBETA-MANNAN. Has anyone tried it? Does it work? I would love to hear from someone who has some information on it. I did look at the website - but it looks a bit like someone is trying to sell a product. Thanks!
CommentHi Maryann. It does sound to me like you would benefit in using Nizoral. I was justpicked up by my husbands insurance, and do not have a card yet. I just wanted themedicine, so I shelled out the 65.00. I will submit it later. I do not have a whitecoating on the tongue, but got a few yeast infections in my day, but was never prone tothem. But I did have some kind of infection. I gave my son thrush in 1996 during birth. Atthat point I was already full blown vulvodynia. I had taken Flagyll for 2 stints, thesecond time b/c we thought my infection did not clear the first time (I got bad vulvodynia2 weeks after finishing the meds the first time). Also, I have never had the cottagecheese discharge one thinks of when they think yeast infection. But after flare ups (evenwhen no pain was present), the next day after urinating I would get a yellow or greendischarge. After that discharge I was fine again. my pain comes in cycles. There was noodor to it, just the discharge. The coating on your tongue signals that yeast is everpresent. The Diflucan does not work for most with an atypical yeast. Neither does theNystatin. Nizoral is usually prescribed initially b/c of it's ability to kill the fungus,then if the woman gets a recurrance of symptoms (important to tell the doc asap), they areusually treated sucessfully with the Diflucan or Nystatin (Nizoral used long term caninhibit sexual desire)in a low dose for an indefinite period. I think I read of on womanwho has to take one weekly to keep the yeast in check. I have also read that one'ssymptoms may come back while on the medication (I had slight burning last night), and thatis common, so don't give up. It shows the medication is doing it's job. Of course, youwould report the burning if it did not subside. Sugar is a major irritant. It is invitingthe yeast to stay and grow, so avoid at all costs if you are prone. I think you should trythe regimen since it sounds like that is the problem. I wrote to my gyn telling him that Iwanted to try it. I am on the medicine for 30 days. I gave a website earlier in theguestbook that shows a successful treatment with Nizoral. It gives the dosages she took,so go back and read. I will let you know if it helps me. Too early right now, but I am noworse. I started 3 days ago. Still have a ways. Maryanne, I hope it will help you too.Best of luck, Laurel I forgot to add, with all 3 of these medicined there is a small riskof liver damage, so always read the warnings before starting.
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CommentI'm looking for a more complete low oxolate diet plan than I've found so far on the websites. Any suggestions? THANKS SO MUCH!!!!!!!!!!!!!!!!!!!!!
CommentTo Marilyn: Hey, no problem. I have a hard time remembering what I did yesterday letalone the name of a treatment I got years ago! I just thought it was interesting to hearanother person comment on a belief that a treatment for HPV led to their discomfort. Ihave since read (on this website actually) that pedophilon in NOT recommended at all forsubclinical HPV (without visible symptoms). It sounded like you didn't have any symptoms.I didn't either when I got the treatment. I do remember that it was a series oftreatments, like once a week for two months or something like that. Regarding the right side/ left side thing - I do actually have pain on both sides inwhat I call 'mirror positions' (the same exact place on each side). It's just that theleft is extremely sensitive and much more severe than the right, which is barelynoticeable at all. I have only had one serious injury to my back and that was months afterthe onset of pain. I'm really at a loss to even guess at the cause and whether or not itis gynecological or of other origin.
CommentCount me as a third person whose vulvodynia was a response to the acid treatments forHPV. Later biopsies showed no sign of the virus.
CommentCHERYL-- i am really interested in the success you've had with Desipramine.i was onelavil for 4 months, nortriptyline for 4 months, and have just switched over toDesipramine--too early to see a change. so, the desipramine was even more effective foryou than the elavil?how long were you on the elavil? i hear that elavil and nortriptylinehave very similar structures, and that desipramine is quite different. I hope i respond aswell as you do to desipramine. i'd love to hear any of your thoughts! thanks.
CommentI'm certain this all began for me when I was treated (laser) 14 years ago for warts.Prior to that, and I'm 55, I never, never had an infection. I feel, and my latest doctor,seems to agree with me that the laser (as he says -- could have) damaged the tissue. Ipositive it did. It's been 14 years of back to back infections and all the symptoms notedthroughout this site.
CommentHi Girls! First time on the site! I've tried to keep this short and I'm a computeridiot so I hope it comes out ok. Here's where I'm at these days. This post is inspired bythe recent 'do nothing' posts. At this time, I intend to address my vv as a strictlydermatological matter. Two things. One, the other day I inadvertenly burned my lips andI've been toughing out the drawn, dry, splitting feeling for fear of becoming a 'chapstick addict' again. When you cruise the net, you can find, chap stick addicts, nose sprayaddicts, eye drop addicts etc. All what should be self-maintaining membranes derailed dueto some OTC intervention. I'm always racking my brain trying to figure out what we allhave in common and I think a considerable percentage of us had occasion to 'put somethingon it'. Someone earlier had picked up on the fact that alot of these meds contain alcoholand who knows what else, the result being a simultaneous soothing and drying effect. So Iam now committed to putting nothing on it. No soap. I have a nipple type water bottle Irinse with after urinate. Two, do you guess there is some kind of eczema thing going on? Ithink with that there is a premature sloughing off of cells under healthy cells. There isextreme itching and redness with this. I had it as an adolescent and no steroids worked.Then I had a doctor that gave me some kind of goopy, oatmeal cream and had me wrap my armsin saran wrap all night for a week or more. The itching was profound. But in the morning,the change in my skin was miraculous. Perhaps the success, or lack thereof, with thesurgical removal of tissue has to do with their ability to 'even up' the tissue. I thoughtit was called occlusion therapy but the only references I can find have to do with eyes.Difficult area to occlude but could be done with female condom. But how to avoid thevaginal infection that would result from all that lack of air and heat and moisture? Maybewith some kind of garlic, sulfur prophylactic. I'm running this one around in my head now.Dr. Glazer is definately onto something with the clenching thing. Sometimes the top of mylegs are so sore it hurts to walk. When I first found the site, I kegaled deligently, andimmediately noticed a lessening of the constant heat that drove me crazy and a markedimprovement of my vaginal flora. But I could only go so far with it. Which is causingwhich anyway? I do extreme abdominal stretching of every muscle in that area. Drink lotsof water. They say the best defense is healthy tissue and maybe like our planet everythingis precariously balanced on one degree and the clenching throws it off. I've read theclenching keeps you from emptying your bladder causing all kinds of irritations. I thinkit screws up the bowel muscles too. I'm in twenty years, having come to this either fromnearly dying from a pelvic infection involving Searle's copper-7 IUD or the horrendousyeast infection following the antibiotic therapy. I am 44 now. I've tried everything, butcame up short of the interferon injections or surgery. I suppose if I had money orinsurance I might have tried that too. I'm not as bad as some of you, just continualvarying degrees of redness and tenderness. I can't afford to see doctors anymore eitherfinancially or emotionally. I think I'm in like 15 grand, 70 pelvic exams, gallons ofgoop, hundreds of pills, blah, blah, blah, you all know the score. I'd love to haveclocked all the hours spent waiting in clinics. I could be wrong, but I'm going this wayfor awhile. It is my hope that we all can 'morphically resonate' and solve this mysterytogether. This past year, being able to come to this site has meant the world to me.Thanks to Dr. Glazer for having it. Best to all. morphic res
CommentI don't even know where to begin! I really did a stupid thing and now I'm paying forit! I was trying to see how it would feel to have sex again. Since my husband is out oftown, I bought me a dill dow and try to put it in. It didn't go in because I wasn't wetenough. So I put vaseline on it and it slipped right in. It didn't hurt at all. I evenused it with a LOT of fast and wild ways(as if I was having WILD sex with my husband). Itdidn't hurt at all. I was so happy because I figured that when we begin having sex, itwouldn't hurt. The next morning, I sat in a tub of HOT water to rinse the vaseline out andoff of me. I know it's not good for you but I didn't use too much so I figured what thehell! Now eversince I got out that HOT tub, I've been hurting so bad! It feels like it'sstarting all over again- the dryness, the irritation, the raw feeling and the feeling thatacid is being pored on top on my vulva. It hurts so bad guys I had to leave work earlytoday. I'm now using the vanicream again and it has helped me somewhat, but I know thatit'll take more then just 2 days to heal me. I hurt and I feel like I want to die! Ihadn't been on in a couple days but I just read Shae's post and I cried for her. She hassaid everything that I have always felt. Sometimes I feel like just dying. I always feellike my only purpose here is to suffer with this condition and then at the same time,staying strong to be there for the family. I have always told my husband that I don'tunderstand why is he waisting his time with me, when I can't even satisfy him the way thatI know a REAL LADY will. He can't understand why I say such things but it's just how Ifeel. And now that I'm feeling it all over again, I really want to go kill myself now. ButI can't because I have to live for the both of them(my child and my husband)! This isnothing but pure hell and I can't deal with it anymore! Shae, what state are you in? Christine, I too am having financial difficulties. My engine just died out on me so I'min the process of looking for a new car. I also have to pay my doctor bills. I'm so angryat myself for being stupid! I can't believe I didn't think before I sat in that tub of HOTwater!
CommentDear Lynn: I'm so sorry for what you're going through. It's not your fault that youwanted to experience sex again. I know that feeling well. Why don't you try sitting onsome ice? I use a bag of frozen peas wrapped in a dish towel. It's very soothing. I hopeyou feel better soon!!!!!!!!! Hugs, Sue
CommentI'm going to get my "official" confirmation that I have vulvodynia next weekwhen I see a specialist. My regular doctor suspects it, and from what I've been readinghere these past few months, I have little doubt. I was going to wait until then before Iposted anything, but I've been reading the entries from the past week, and it seems likeseveral people are having a really hard time lately. I've never seen anyone in the chatrooms, and I think it could possibly be helpful, especially when someone is having areally bad day, to be able to chat real time versus just posting and venting. This way wecan lend more support to each other. Just a thought....is anyone interested? We could setup a regular time or just go there regularly.
CommentI have been diagnosed with HPV. It is on the outside of the vagina. It is a horseshoeshaped area at the bottom of the entrance to the vagina. I have no warts, but I have hadthis burning, raw feeling for 2 years. It is red in that area. I also have dermatitis onthe hair area. I used steriods off and on until I went to a new Dr. and she did a biopsy.She prescribed Aldara cream (she said it was a chemical therapy cream) to use once a weekand twice if I could stand it. I have used it twice and it burned a little, but then 2days after each treatment I felt better all over my body. My question is, is this the acidcream everyone has been talking about? Sex is not painful to me, only afterwards if Idon't use baking soda to rinse the area with. Sometimes, I tear on the area between myvagina and anus more at the entrance of the vagina. It heals and then sex feels fine. I amnever dry down there. We used to need lubrication before I had all of this trouble, butsince I got off birth control pills a year ago I am real wet. Can anyone explain that? Itis uncomfortable to sit and I can't wear jeans or cotton pants. I have to wear cotton knitpants. YUCK! If I wear jeans or cotton pants I get very ill with pain and feel bad allover. Isn't that strange! I am having some good days now that I know what to do, but itkeeps coming back. I can't figure out what triggers it because each time it seems to besomething different. Traveling is a real killer. Driving is a pain, too! I wish someonewould find a cure for us. I am thankful it has not ruined my sex life with my husband. Wehave to do things differently, but I feel lucky compared to most of you.
CommentNo one is ever in the chat room. We need to schedule times so we can chat. I believethat is what Dr. Glazer would like for us to do. People need to post times they areonline. Frank I would love to chat with you.
CommentTo the last lady to post: Regarding the tearing, my wife tears in the exact spot. Ihave been posting here for months and I am sorry to those who are sick of re-reading myentries. We too used a lubricant when my wife was on birth control. I know they allcontain proplyene glycol. Maybe that didn't cause all the problems but maybe some peopleget irritated by this ingredient. My wife had surgery to form a new scar where she tearsbut it did not help at all. Best of luck.
CommentJust wanted to say that I was diagnosed with HPV in 1992. It was the only thing mygynecologist could find when I was complaining of intense pain. of course, no one knewwhat the vulvodynia was at the time. I personally don't believe that there is anycorrelation between the two. He found very few warts and almost did not see them at all. Ithink if we get burning, but can't find what is triggering it, there is an infection thatflares up when the conditions are just right. I am having luck so far with the Nizoral.God, I just hope that this is what I needed to get me over the hump. I had made animprovement but there was something else in there and I had no idea what was keeping mefrom making the recovery complete. I will continue to let you know if things improve.Lynn, I am sorry to hear about your saga. At least you had the courage to try. I don'tthink that the bath was responsible, probably just a trigger after the fact. My doctor isnot keen on baths in general. It is an invitation for those prone to infections. Try cold,then heat to the area for immediate relief. Please do not lose hope. Post so we know thatyou are ok. Why don't you try an antifungal? Maybe there is something in there that needsto be eradicated by means of medication. Read through dr Davis' site again and see if youcan't find a treatment that may work for you. Let me know if you are okay. Laurel
CommentFrank, I know I am allergic to the ingredient you mentioned and others as well in thoseproducts. Now, in foreplay we use vanicream. It works well with no side effects. I don'tknow why your wife tears, but if she wants sex then go for it. It is worth the painafterwards. She will heal. Let her make that decision. It is her body. You make her feelworse when you don't. The torn places do burn, but I rinse with baking soda afterwards andI put a small lamp on me under the covers. The heat speeds up the healing. Clothes make adifference, too. I guess, I am used to pain everyday. Sex makes me forget about it forawhile. At least with the things I do tohelp my problem I can wear certain types ofclothes now and have pain free sex. Maybe your wife needs to see a dermatologist. Not aman, but a woman. The one I use has helped me.
CommentHi everbody. I'm just so agry and I have no one to turn to right now. I want to killmyself and that's the only way out of it. I'm too scared to get in any water. I can't doicepacks because they irritate my skin. I suppose I can sit in a cool tub of water but I'meven afraid to do that. I believe that it was the HOT tub that caused all this. It couldbe that, it could be the vaseline or it could have even been the sex part of it. I don'tknow but I'm just so upset. I called my freind and cried to him but he had his ownproblems going on. He didn't offer me any advice because he knew I wouldn't listen. Hetells me that everyone has problems and I'm not the only one with problems, but I KNOWthat our problem is worse than any others out there. After 2 years of this shit, I think I'm ready to take some anti-depresants. I'm sodepressed and feeling suicidal right now. Anyone knows of a good antidepresent with verylittle side effects that will work for me? Please let me know. I'm willing to set up a chat time with anyone so just let me know who you are and whenyou want to be on. I haven't prayed in forever. All of you already know that I've given up faith and Idon't believe in the power of prayer. But I prayed earlier and BEGGED him to take the painaway and let me feel normal again. I can't believe I prayed because I fear that it'll onlymake things worse. I still don't believe in it but I hope that it helps in some way.
CommentHow do you get into the chat rooms? I clicked on Real time chat but I didn't seeanything about vulvodynia that came up. Is it not working again?
CommentPLEASE everyone, STAY AWAY FROM THE HOT WATER! I didn't realize that it was taking outthe moister I had in my vulva. Now I'm dry and very irritated again. I'll have to rely onmy vanicream and hope that it does the trick for me again. I'm so scared guys! I'm readyto make love to my husband when I see him again but I don't even know if we can without ithurting so much! If the vanicream helps me within 3 weeks, I'll know that it's helped meand then I'll NEVER do that stupid shit again!
CommentWhoever is interested in the chat room, why don't we go there at 7pm and/or 9pm ESTtonight. Then once talking we can figure out a good time for everyone. You have to sign upto be a member of the vulvodynia group (not the vulvodynia-support) to use the real timechat. I also had to get a Yahoo id - I think there is a way around that though. Here'swhat I did to get in there: Go to Real Time Chat on vulvodynia home page. Click to enterchatroom. I didn't have a yahoo id so I signed up for one. After I got my id, it justbrought me to my yahoo email page so I just went back to the vulvodynia homepage. Thistime I signed in as an existing user. It asked me which group I wanted to join - I had todo a search for vulvodynia. once it brougt it up, I then clicked on join this group. Youcan either click on chat in the vulvodynia group page or go back to the vulvodyniahomepage and click on real time chat - it looks like it is the same thing. Sorry if thissounds a little confusing!
CommentLYNN, the intense pain you are in right now will most likely subside within a few days.I know how hard it is, but you probably know that every time it has been horrible, and youcannot stand it anymore, it gets a little btter again after a while. I think cool bathsare a good idea. Just soak for 10 minutes or so. Pat dry, and then use a cool hair dryerto dry the area well. I'm sorry you are suffering so badly, I remember clearly what it waslike. I used to cry, and feel like it was never going to end, and that most people had noidea what it was like to be in pain and not be able to do what everyone else can...havesex. It was such a loss to me. There are a bunch of antidepressants (SSRI) but be awarethat some of them have the side effect of causing anxiety...so if you are anxious anddepressed, you might want to take a benso with it. I personally would rather feeldepressed than anxious. Anxiety makes me crazy! It was one of the worst parts of dealingwith the vulvodynia for me.
CommentI have suffered with vulval pain for a year, not finding any relief. since then I saw ahomeopath with good results from "causticum"-for burns & have discoveredfrom using a product called LACTACYD by smith kline & beehcam -containing lactic acid,that I have a ph balance problem in my vagina-as I now am well!!! i have an occasional"flair up" if I am tired or stressed & this product used daily combats it.It is such a relief to feel well & to have my life back. thank you to all those whoare trying to educate doctors on womens behalf. We do not need to suffer for so long beforwe get any treatment- my last 4 doctors just didn't know how to deal with thisissue...& didn't!
CommentLynn, I am so sorry for you! I think I made a big mistake and got in a pool yesterday.My niece is staying with me for a little while this summer, and she wanted to go to thepool. She doesn't have anyone to play with so I felt like I had to get in too. I havenever burned this bad. The only thing that helped me was a nice warm bath. Have you everhad any problems before with hot baths? It tends to soothe me for a while. I have alreadybeen having a bad week, so I'm just hoping that the pool "incident" will notmake it worse. Like Laurel said, @ least you had the couraqe to try. Sex hardly ever hurtswith me, but I'm scared to have it in fear of hurting. Is that stupid or what? Well. IREALLY hope you get to feeling better. Just hang in there, and whenever you need someoneto talk to, let me know. We're all in this together! By the way, I think I told you that Iwas going to be in Arizona for a conference in a few weeks (if nothing changes). Email meif you like. Take care!
CommentI noticed a lot of people talking about hot baths. This may sound stupid but that isthe only thing that gives me some relief. Should I not take hot baths? I went to a mineralbath house right before the vulvodynia first started. The water was extremely hot. I evenhad the attendant to turn the temp up for me. Does anyone think there was any chanceeither the mineral water or the hot temp was a factor in my vulvodynia. I have intenseburning all day especially when I am sitting.
CommentWhat is the ACID CREAM that some of you have used? Is it ALDARA?
CommentLYNN-- i am not sure why hot water would bring back your symptoms since i always putheat on the vulva and it makes me feel better. maybe you are just sore from using theinstrument, and you will feel better very soon. and when i get stressed or nervous aboutthe pain, the stress and the clenching makes the pain much much worse. and then, ofcourse, you worry more, etc. try to relax and take some deep deep breaths. i am sure youwill be fine very soon. just try not to worry (i have trouble with this part myself!!),but just remind yourself that you have improved so much already. every woman gets aflare-up, but it does not mean that you must start over again. from what i read, thoseflare-ups last a week. not the months and years we have previously experienced. Good luck,i know you will do well.
CommentTo Lynn and the other person who asked about the acid HPV treatments. I copied thefollowing paragraph right out of the FAQ section of this website. These are some of theacid treatments used to treat HPV. "Many of the topical treatments commonlyprescribed for HPV will not work [for vulvodynia, if you don't have HPV], hurt terribly,and can worsen your condition. These include trichloracetic acid (TCA), Efudex, andpodophilox (which is actually absorbed systemically and is toxic). The idea behind TCA andpodophilox is to destroy the HPV lesion -- which won't work if your form of HPV issubclinical (present without visible indications like warts). The idea behind Efudex is tocompletely destroy the top layer of skin of the vulva, to allow new healthy skin to growback. (Efudex is generally the first treatment option for vulvar cancer.) Creamscontaining very low concentrations of Efudex (below 2%) MIGHT be helpful; creamscontaining higher levels have given women severe burns on their labia. Be careful!" Aldara cream is a separate treatment for HPV which you get as a prescription.
CommentI know there have been studies linking HPV to vulvodynia. (And studies finding no link,too.) But I wonder if anyone has considered the fact that the link may be the treatmentand not the virus?
CommentLYNN... I am so sorry to hear about what happened. Please know it isn't your fault. Weare all sexual beings and have needs just like ayone else....this is a cruel andexcruciating hand we've been dealt. I am still in antagonizing pain, crying everyday,asking what i did to deserve this and eyeballing my morphine pills (that have never helpeda bit with the pain), to see if i have enough to do myself in when the time is right. Likeyou, I too have lost most of my faith. I fell almost prayed out. Lately, I have found theonly time I pray is when I ask the Lord to mercifully take my life. I feel like if I prayfor it to be better, I sometimes feel worse (does that make sense?) I don't know aboutanyome else, but I haven't been able to take even a lukewarm bath since this whole thingstarted 13 years ago. Even room temperature water burns my vulva. I have to take coldshowers every day and terribly miss the hot baths and showers I took in my youth. It's notjust dealing with the pain that never ends...it's dealing with the emotions. The guilt,the loss of goals and dreams, the inability to just be who you were born to be. It's purehell. A little over a year ago my doctor gave me an estrogen cream and after applying it Iburned as if I had just pur pure acid on myself. That was the only time I took a lukewarmbath to try and get it off. The water was very drying and got rid of the cream but dryedmy skin out badly. It took about a week but it did get a bit better (well....let's say itjust went back to the normal nauseating pain I always felt before the incident). I toopunish myself for things that end up making me feel even worse. If I even go over a bumpin the car I get worse and then I'm angry at myself for not avoiding it. Basically, you'rejust mad at your own body for betraying you. I know the feeling. My pain just seems to getworse with age. Nothing seems to help anymore and I'm losing all hope. My pain hasintesified over the last 9 months to the point where it is no longer bearable. My doctorsdon't know what to do. They have tried EVERYTHING. If I don't get at least a bit bettersoon, I don't see the point of being here anymore. I don't have children (thanks to thecancer brought on by all my vulva treatments), but my husband would be devastated. That isthe only reason I even try to stick it out. But I'm tired of him coming home to a sobbingmess. I really hope that your pain is just temporary Lynn. By the sounds of it, yourvulvar skin was just irritated and then dried out by the bath. I'm sure it will heal andyou will feel much better in a few days. Give it time. You know this was related tosomething that happened rather than just starting to flare up out of the blue (like minedoes), so chances are it will recover. Take care and try to hang in. HUGS
CommentI just wanted to say again, since there has been a lot of HPV talk...if you getdiagnosed with HPV, have the biopsy sent for a DNA test before you use any of that damnedtreatment on your already irritated vulva. If you have HPV, you will have to treat it, butyou can come back positive for HPV and not have it! A little off the track, a lot of women have talked recently about praying or notpraying, losing faith, etc. I think it is sad that your religious beliefs have let youdown, maybe even made it harder to cope with this. Maybe you were raised thinking that ifyou live good honest lives nothing bad can happen, or that God is punishing you? Or, somesort of ying and yang, life should be just thing? I'm not trying to convert anyone here,but I tend to believe that life is more random, and bad things happen to good people(there is actually a book with that title "bad things happen to good people",I've never read it). We see it every day, young innocent children die of cancer,wonderful, stand up citizens are killed in a freak auto accident. I am not comparing ourplight with these examples, but trying to show another way of believing/thinking that forme makes more sense to my world. Somehow thinking this way helps me, and I hope it mighthelp others. I don't look for the explanation for everything, I don't have to know theanswer to WHY I had vulvodynia, and I don't look to some almighty power to magically takeit away, because I do not believe it magically appeared. Again, I am not trying to swayanyone's religious beliefs, but wanted to offer my point of view as an option to see theworld a little differently.
CommentLynn: I just about started crying when I read your posts. How frustrating and disapointing!!Having gone through the surgery now myself I know how I would feel if the pain ever cameback that bad. I think it may have been the vaseline that did it. You were probably a little swollenfrom the activity that you were not use to and when you went into the hot bath after thevasceline I bet it was just like putting vasceline on a sunburn and going back out in thesun. Normaly a hot bath makes me feel better instead of worse, so I bet if you hadnt had thevascaline on when you took it it wouldnt have burned you. I could be wrong. I would justtake it easy for a little while. Stay home if you need to, dont be a hero at work. Takecool baths and I have found that when I have burning pain an ice pack wrapped up in a thintowle works really well. Please!! If you are having that bad a bout of depression listen to yourself and go infor antidepressents. Even if you only take them till things work themselves out it willget you past this difficult time. Suicidal thoughts are dangerous even if you knowrationaly you will never do it. I know, I have been there. I havent taken this drug, but I have heard good things about Wellbutran side effectwise. That might be a good one to try, and it might help with the burning too. Hang in there girl we are all hear for you. If you need someone to talk to donthesitate to email me. I know your struggling with your faith right now and dont like topray, but I hope you dont mind if I keep you in my prayers. Laural: I have been tested for hyperthyroidism and I dont have problems there. I also havenever been told I have fibromyalgia. With my IBS I also tend to have more issues withconstipation then with diarreah. That gave me some issues during my surgery, but I did mybest to keep my stools soft after I broke a couple of stitches early on. Christina
CommentHey everyone, Just a little update on my recovery from surgery. I went to my doctor yesterday and she told me that everything is looking great. I donthave a yeast infection like I thought I did. It is just inflammation around the scartissue. She prescribed me a leval 2 (weaker then Temovate) steroid cream. I am to take itonce a day and mix it with my Estrace cream. I guess the inflammation is pretty normal andthis should clear it up and make the scar tissue a little more flexable. Dr. Thomason told me I can begin easing into my normal activitys and work again. I havebeen planning to go back in 2 weeks at her suggestion. That should be enough time to getuse to things. I want to thank everyone for their help and support during my recovery. Thanks also toeveryone who contacted me before my surgery to answer my many questions. Christina
CommentI now remember my doctor used an acid treatment on me right before my vulvodyniastarted. I think it was podophyllin? I ended up testing negative for HPV with a biopsy. Ihad a skin tag on my vulva and was concerned it was a wart. My doctor said it wasn't butshe put the acid on it anyway. Then another doctor did a biopsy, actually 3 from differentareas, which were negative. He thought I had HPV because it turned white with the vinegartest, which I understand happens with vulvodynia, even thought there is no HPV. I'm surethere are many with vulvodynia who have been told they have HPV when they don't, becauseof the whitening with the acetic acid Mary Ann
CommentWe used the Chat Room. It was great. I believe we had five people use it. Please joinus. Check it everytime you are online. Someone should be on.
CommentTo Stephanie C, when are you coming to AZ and what city are you going to be in? I'dlove to meet you. Thanks for your Email address. I'll be sending you messages okay? To D, I KNOW the hot water made me feel this way because it dried out my skin- takingaway all the moister I had. I really don't belive it was the sex part of it nor thevaseline. It HAD to be the HOT water. I just started my period yesterday, perhaps thatcould be a reason as well. I use to hurt everytime I started my period but then itstopped. Perhaps it's back again. But I really believe it wat the water To Shae, I swear to you feel EXACTLY how I've always felt from day 1. I know how youfeel about trying to hang in there for your husband. It's so hard and I don't want tofight it anymore! To be honest, now I want to get my entire vulva cut off! Either that orjust die! Someone had said that a while back and that's how I'm feeling now. What is yourrace? And where are you from? Do you mind if I Email you sometime? I called my doctor and he prescribed me some Zoloft- 50mg. I've NEVER takenantidepresants before and I'm very scared to. I haven't gotten them yet. I'm going to waitabout a week to see how I'm feeling. I'll be off my period by then. If I haven't gottenany better by next Friday, I'll take the medication and then scedule an appointment withdoctor Dr Gorgon Davis(he's only 20 minutes away from me) and I'm going to ask him to cutoff as much vulva as he can. I'm serious because I can't keep living like this. Has anyone ever taken Zoloft? I'm wondering if it's any good or not.
CommentTo Jessica, I don't understand how to log on to the chatroom. It so stupid it doesn'tmake any since! What am I suppose to type in when it says, find a group to join? I mean itdoesn't say anything about vulvodynia! It's really agrivating!
CommentLYNN, don't be afraid try the zoloft...you said you felt like you needed something. Youcan always stop, it is not an injection that once it is in your body you have to live withthe long term affects of it, you can just stop taking the pills if you want, but rememberthat if it is something you take in increasing doses, when you stop you have to do it indecreasing doses...don't just stop cold turkey. MARY ANN, thank you for stating that a lot of vulvodynia patients turn white, and itlooks like HPV to doctors. That is exactly right, and even the biopsy can look positivefrom inflammation. That is why I keep going on and on about if a doctor tells you you haveHPV, be sure to get the DNA test BEFORE doing any treatment.
CommentHave any of you heard about having too much normal flora in your vagina ? If so, whatwas the treatment and effects ?
CommentI went ahead and took 1 zoloft last night. It made me drowsy and caused a headache. Nowthis morning, I feel even worse! I called the pharmacist and asked if I could have my $33back and he said no I have to call my doctor. I'm on my way to work and I feel like shit!
CommentLYNN....feel free to email me. I hope you are feeling better today. I too have problemson antidepressants and they have never helped me. Hang in there.
Commentantidepressants never helped, me especially with my vulva pain...in fact the SSRIfamily makes me feel horrible and anxious. BUT, I have friends that have been very helpedby antidepressants, and I personally think that during a crisis full of anxiety thebenso's are a great thing. Lynn, if you feel bad on the Zoloft, of course you can stop, but you might want to giveit a few days, to make sure you are just not having a bad day today with no relation tothe meds.
CommentMY DOCTOR SAID THAT I HAVE VULVAR VESTIBULITIES. SHE ALSO SAID THERE IS ONLY ONE DOCTORTHAT IS FAMILIAR WITH THIS PROBLEM. HE DOESN'T NOT TAKE HEALTH INSURANCE HE WANTS CASH UPFRONT. SO I WAS WONDERING IF SOMEBODY THAT HAS THE SAME PROBLEM REFER ME TO A DOCTOR INPHILADELPHIA OF NEW JERSEY. I BEEN TRYING TO FIND A DOCTOR FOR ABOUT TWO WEEKS NOW. THEONLY PROBLEM I HAVE IS WHEN I INTERCOURSE WITH MY HUSBAND IT HURTS EXTREMLY BAD. PLEASESOMEBODY HELP ME. E MAIL ME AT BILLKELLY1@MSN.COM
CommentVERY interesting remarks on the HPV issue. Anyone who'e been diagnosed with HPV,especially without the presence of warts, should consider a second opinion or the DNA testJennifer reffered to. My HPV treatments definitely had an impact on me. I had some burningduring my period before, which was the reason I was at the doctor's in the first place,but after my diagnosis and the start of treatments, my burning 'changed'. Sounds strange,I know. It moved in location (sounds even stranger) and in the new area, became more of apainful burning. It's now a permanently sensitive/sore spot. But only burns when it'sclose to my period. So be careful with these treatments. It seems that there are a varietyof possible side effects no one is mentioning to us prior to treatment.
CommentI think people should be careful about any topical treatments unless there is a validreason for it. Early on in my VV doctors prescribed yeast medications, anit-fungal creams,and topical steroids even thought they never found any presence of yeast, infection orbacteria. They told me to persist with the cream until the pain was gone (of course....itnever left), even though my tests showed nothing abnormal. I also had the HPV acid testeven though I had no presence of warts and afterwards they also said they never foundanything even remotely like HPV. The test gave me 3rd degree burns. Today, my specialist tells me that steroid, fungal and yeast creams can thin the mucousmembrane and cause the skin to become taut, less elastic and very dry. There is no way toget this tissue back once it is destroyed. She said that those doctors would have beenbetter to do "nothing" especially when I have never had so much as a yeast orbladder infection. My chances of remission have been taken away by these treatments. Iwish I could go back and do it over but unfortunately that isn't going to happen. I justwant to warn people with new cases of VV to make sure that they are diagnosed with anactual yeast or fungal problem before they start taking such topical treatments. I may notbe able to save my own vulvar tissue at this point, but hopefully this will save someoneelses. After having surgically induced menopause, I am now dryer than ever and nothingworks to moisten the skin (most of the moisturizers even burn and sting making it worse).My skin bleeds when I walk and my vulvodynia is just agonizing now. I wish I could go backto 8 years ago. I still had vulvodynia back then, but not nearly as bad as this. I amthrowing up from the pain. Good luck to eveyone.
Commentwhen it says find a group to join type in 'vulvodynia' that should bring you to thevulvodynia group page. once there, click on 'join group' and you should be all set. ithink people are going there around 8pm tonight. post again if you can't get in it.
CommentI went to work at 8 this morning only to have to leave at 8:30 because I felt reallysick and had a bad headache. I came home, slept from 10:30-5 and I feel just a littlebetter. I'm not hurting as much as I was these past couple days but I'm not too happyabout that. I just want to feel as happy and as good as I felt before I got in the HOTtub. My husband called me today and I told him that felt so terrible. He felt bad becausehe couldn't be here to comfort me nor could he take away the pain. He just talked to metrying to make me feel better but I just want to feel completely better that's all. Thanks for the info about the chatroom. I'll try it again some other time. Right now,I'm going to lay down and get some more rest.
CommentI was just checking out that chat stuff, I still don't know how to get into it. I keyedin vulvodynia, but then what? I saw some thing that said , Join group and New group Idon't know how to get through and I'm getting very frustrated! You'd think it wouldn't bethat hard!
CommentTO LAUREL: I have mild vv that seemed to pretty much come under control with Estrace &Serzone--but it's really acting up again. I've decided to buck up and do the low-oxalatething. I've read some of your postings (I read them a lot more often than I contribute)and saw that you are on low-oxolate & low-yeast. I know if I want to do the low-yeastthing I should stay away from sugar & fruits. Right? (That makes me SAD--I am alreadybummed about staying off chocolate for low-ox :) ) What else should I stay off of forlow-yeast? By the way, I am very encouraged by your postings--because you are so encouraging tothe other woment. This stuff is tough, but it's great to see that you manage to helpothers and keep a good attitude. May God bless you! I'll be looking forward to your response! Beth A. (There's another Beth, too, on this site)
CommentFor the chat room, scroll up to the top of this page and on the left you will see RealTime Chat and click on that. Doing this will take you to the chat room.
CommentWill somebody please expalin the difference between Vulvodynia and Vulva Vestibulitis?I thought my doctor said that I had Labia Vestibulitis..is there such a thing? I havehorrible burning and pain only on my labia majora (I think it is called). Thank you in advance. I have been reading many entries to gain information..this is allnew to me! ~Alison
CommentThanks Beth A. for the kind words. This is such a hard disease for all of us. It is soimportant to just hang in there and not to give up hope. I have my crappy days too believeme, but I never think that a cure won't be found at some point. There are people out theretrying for us. You will find relief most likely in the lo oxalate diet. I found evenmoreso with the anti candida diet combnation. I think that a yeast book can better tellyou what to eat. I was noticing that after eating one of my fave things, I was flaring up.Vanilla ice cream, and Breyers to boot. but the low oxalate diet says one can have sugar,milk, cream, eggs, and vanilla. Well, that's the only thing in there, so what gives? Andsometimes after dinner I would notice that I could eat it with no ill effects. Strange. Itries to make the cinnection. What was causing this? Well, in the anti candid book, sugaris the worst thing one can eat. Then, I noticed that there was a pattern. The foods on theyeast list that the low oxalate diet says is ok, were exacerbating symptoms. I was on tosomething. Why wasn't the pain there sometimes? Because after a large meal, one's body hasthe ability to digest much better. in fact, the book states that by waiting about 30minutes after a meal, there may be no effect at all. Of course, serving size has a lot todo with it. I am usually okay with 4-6 oz, even sometimes 8, but anything beyond that andI will fell it a couple hours later. Also, if I tries to eat it more than 1-3 days in arow, the serving size may not even matter. it is important to do a 4 day rotation diet. Ioverdid it yesterday, so I am a little burning today, but the Nizoral that I am on ishelping immensely. I will probabaly feel better in a couple of hours after it passes.Before, it was a couple of days or more! I think you will benefit by looking into thediet, and this medicine. I wish you the best, honestly. I hope that this will urge some ofyou to try it. The books are helpful. Some of the low oxalate foods we think we can haveare no no's in the yeast. By combining them together, I am noticing a difference. However,I needed the medicine to make the real difference. I really should be avoiding all sugarswhile taking this, I will try for the next few days, as my sweet tooth gets the better ofme. I will let you know how things turn out. I still have a few weeks left on themedication. It is possible that the yeast will return if I don't follow the diet later.Many will always need a yeast medication after when they notice it coming back. I thinktat would be 1-2 pills weekly for maintenance. For now, just one thing at a time! Lynn,honey, I am praying for you. Hang tough. Apply heat pack, then ice packs. It will subside.Did you eat anything at the time that may have contributed? Please don't give up. I am offto buying things for my wedding reception tomorrow. I have not been posting so muc, busy!But I am still reading! See you soon, and God bless, Laurel
CommentLynn, Shae, buttercup - don't give up. Anything I have learned to make me better has, Ithink, come from people posting on this site and there is still much for us all to share. I mentioned (on June 6 I think) about magnets in pain reduction and their use invulvodynia. Since then I have been wearing a magnetic bracelet (which has north facingmagnets which are the ones which are meant to reduce inflammation) and occasionally use avery large powerful on my vuvlval area at night when I am watching TV or whatever. I haveimproved no end - the soreness has virtually gone, though I am left with some painfulouter labial areas. But I can live with those for the moment because of the vastimprovement otherwise. Two years ago my vulvodynia was so bad I could barely walk. Like other women, mine haschanged its form throughout that time. The three things for me (apart from the magnets)have been cotton (non disposible) sanitary towels; baths in 2-3 drops of essential oils(esp. chamomile) and using a non bleached toilet paper. Of all of the things I think theloo paper has been the one which has stopped the terrible soreness. Then of course I'vebeen doing all the other stuff we all know off by heart (no soap, low oxalate etc.) But the change with the magnets has been unbelievable. I bought mine from the Internet.Hope this may help someone.
CommentHi Kate: I'm glad you're improving. Can you please tell us which internet site youbought the magnetic bracelet and other magnet from? Thanks. Sue
CommentLaurel, Thanks for the advice! I have ordered a low-yeast cookbook and will be sending in myorder today for the low-oxalate cookbook. I've been reading on the net, and am confusedabout dairy products. Are they okay? If so, which ones are better/worse? I will be goingon vacation on Wednesday and am afraid my books will come while I'm gone. I want to try tostick to this diet as much as possible while on vacation. Thanks! Beth A.
CommentAllison, click on this link: http://www.vulvodynia.com/faq.htm#**2.WHAT ARE VULVODYNIA AND VULVAR VESTIBULITIS?** for the answer to your question. All theFAQs on this website are great! Don't know about labia vestibulitis.
CommentBeth, I am glad to hear you are confisent about the diets. Give them time to work. Ihope you have read The Yeast Connection and the Woman. It had a chapter on vulvar pain,which was very informative. The answer to your question about dairy is that it should beavoided. Especially fat free and light milk. I think cream would be less irritating, butit's so hard to say. Milk is converted to sugar in the body during digestion. Especiallythe low fats. Those have a lot more carbohydrates (energy). The more carbs, the more it isabsorbed as sugar. Following a low carb diet, high protein may help, but you have to watchthe foods you eat. I can eat eggs no prob, but many who are yeast sensitive cannot. I canhave American cheese (1-2 slices), but not the aged cheeses. High in yeast when theyferment. You really have to try yourself. It is tedious, but will probably give you reliefin the long run. The anti candida cookbook I have offers no yeast breads and sugarsubstitutes. It is great. They give websites where to order these products. Good luck! Allthe best, Laurel
CommentI just want you all to know that today has been a good day for me (Knock on wood). Ihaven't hurted at all, just fell a little discomfort. My period is over with as of lastnight( could that have been the reason for my pain? ) I've been using the vanicream againsince I sat in the HOT tub( could that be the reason why I feel better now ?) I don't knowI'm just thankful that I felt better today. I hope it goes on and on. I won't be in anyHOT tubs no more! And I'll continued to use my vanicream for the next 2 weeks to play itsafe.
CommentI am so glad you are feeling better!!! I hope it continues for you too. Good Luck toyou and eveyone with this crazy thing...
CommentHey Girls, Just thought I would say a few things since I have now been researchingVulvadynia. I suffer from the same things that you guys do, but I have gone a step abovejust doctors. I am now currently seeing a naturopath which only they only deal with herbs.I found out alot of info about myself by seeing the naturopath. First thing I was notdrinking enough water. You should cut out all cokes and so forth .....JUST WATER! He hasme on several other things as well and guess what. I have been pain free for at least onemonth. Having wonderful sex and the labido is coming back! All of this is due to detoxingmy system, kidneys and adrenal glands. I also stay away from sugar, bread,starch. If yougo and see a naturopath look for it to cost around $250.00 or more including the herbs. Itis really neat and painless. The test they use is called a computerized electro dermalscreening test. They have a computer that tests you for anything known to man and usuallyit shows how far your system is out of wack. Then the computer tells you exactly what totake. It took 3 weeks for me to see an improvement. You would not believe some of thethings he found. I had a virus and a bacteria floating around besides my adrenals,kidneys, matabalism, thyroid, just to name a few were inflammed. He helped me better thanany doctor so far. This naturopath is here in Atlanta GA and the number is 770-537-3737.His name is Jay. I am also going to see the only docter that treats vulvadynia in thesoutheast and her name is Elizabeth Edwards inCharlott, NC. She has been very successfulat treating vulvadynia. I just feel that if I have her and Jay working together on this Iwill completely heel. I hope you will at least try a naturopath in your area because you have nothing to loseand everything to gain. I wish everyone well and I hope your lives will be changed for the better. Your friend,Bunny
CommentTo Lyn and others who use Vanicream, I have just started using it and am experiencingmild itiching. I have read that its ingredients are similar to estrace and this oftenmakes people itch because of the icreased blood flow and healing it causes, however, Ithought the estrogen in estrace was responsible for this (which is not present invanicream) Has anyone using vanicream experienced this. Thanks
CommentI was reading some of the recent postings about the low oxalate diet. I haven't noticeda change in symptoms when I eat the foods that are high in oxalate. Given that, doesanyone know if the diet could still be beneficial?
CommentTo the woman who asked about the Vanicream and itching. I have heard that itching canbe a sign of healing, so that is a possibility. Perhaps the area just has to get used tothe substance first. I would suggest using the cream sparingly, at least in the initialstages to make sure that there is no adverse reactions. For Jessica, I still think thatthe low oxalate diet will be beneficial to you. It takes time to work, so patience is key.Maybe the diet is not working yet, so that is why the foods low or high in oxalate are notmaking a difference thus far. Stick with it. if you do not notice a difference after a fewmonths, it is probably wise to try the citrate, the glucosamine, and/or the HTO to getfurther results. It is painstaking sometimes, but if you have the will power, there is agood chance you will see improvement! Talk soon, Laurel
CommentVanicream contains propylene glycol a known irritant to some. Learn more about theproducts you apply to your body...
CommentTo Lisa, I have no problem with the vanicream. It has worked wonders for me. It doesn'tbother me at all. I use it plainly without any steroids in it. I don't know what else totell you. To Jessica, the low oxolate diet helps me out. It has made a difference. If I eat anyhigh oxolates foods, I'll burn sooo bad! Does pizza causes any of you pain? Just wondering.
CommentRe: Zoloft or any of the other SSRI drugs-I hate them!! They may help some people but Ishall never take another SSRI drug. In addition to the headache Lynn spoke of,Zoloft mademe feel as though I were on some sort of LSD trip.My gyno had prescribed it as a painblocker. This is the only thing she has Ever done in reference to my vulvodynia.She barelyacknowledges I have it and refuses to do her own research on it.I just handle the symptomson my own-to hell with doctors. I only go to her now if I get the occasional bladderinfection.Anyway-my 2 cents worth on SSRI drugs.If I am dying and the only thing that willsave my life is an SSRI drug-let me die! Lynn-hope you are much better now.Sounds like youhad several realllllly bad days.I know I never sit in tubs anymore.Haven't in over 4years-showers only for me.No matter how clean we think our tubs are there is bound to beresidue from everything in and on the tub.But-I do so hope the pain is lessened andpost,please how you are. Laurel-any updates on the disability?
CommentToday I bought some Calendula cream at the health food store and it relieved my burningbetter than anything else I've tried. I just hope it continues to soothe my skin b/c I'msick of going to Drs. who don't know how to treat Vulvodynia. I can identify with notbeing able to take antidepressants. A couple of years ago I took Serzone for 3 days and itmade me sleep the entire day, I was sweating like a pig, I was more depressed. It was ahorrible experience, so I've never tried any antidepressants to treat Vulvodynia. I keepthinking in the back of my mind that there will be a cure for this unrelenting painsomeday soon!!!
CommentEating pizza is an open invitation to days of burning. Tomatoes are high in acid andhigh in oxalate. I cannot tolerate it any amount. Secondly, if your symptoms stem fromyeasty foods, then the flour in the dough is going to set you off even further. DO NOTEAT!!!!!!!!!!!!!!! For RS: Still waiting on the disability! It has been months sincereconsideration. I just don't know what will happen. I think I should be hearing any daynow... nervous! But, I will go the attorney route if need be. I am going to fight toothand nail for all of us. The more SSA learns about vulvodynia and fibromyalgia, with anyluck, the more it will help future candidates to get the benefits they need and deserve.Talk soon, laurel
CommentSue - I bought my magnets from a company in the UK - their site ismagnetictherapy.co.uk. There are loads in the States if you do a search though. I wear amagnetic bracelet every day and use a 'therapy power block' (which is 6ins by 4ins) on thevulval area some nights for a max of two hours. I started by using little 'ceramic wafermagnets' pinned in a pouch inside my knickers! I am convinced they are working. Really!The research I have read is very convincing too. Just make sure you use the north side toyour skin. Here's the research I posted a while ago if you are interested - Static magnetic field therapy for pain in the abdomen and genitals. Holcomb RR, Worthington WB, McCullough BA, McLean MJ. Department of Neurology, Vanderbilt University Medical Center, Nashville, Tennessee37212, USA. Two adolescents with debilitating, medication-resistant, chronic pain of the low backand abdomen with intermittent pain of the genitalia were diagnosed with intervertebraldisk disease at spinal cord levels that correlated with their signs. Both patients hadundergone multiple evaluations by physicians of different specialties and both underwentappendectomy without relief of their pain. The history of the onset of pain was importantin determining the affected levels. The pain of both individuals was mimicked andlocalized by percussion of the vertebral spines at the level of disk protrusion. Thismaneuver and careful review of the history were important in making the correct diagnosisin each case. In both patients, treatment with novel magnetic devices provided rapidrelief that was sustained for more than 2 years. These cases highlight the need forcareful evaluation and correct diagnosis of abdominal and genital pain in young patientsto avoid costly and unnecessary medical intervention and the stigma of painful debility. Interesting on two levels I thought. One is that the magnets can heal pain in thegenital area but also it touches on the subject discussed on these pages about thenerves/pudenal nerve/old injuries being involved in vulvodynia. This site: www.medicinehouse.com/magneticcenter.html#Supplies. mention only around 15 types of pain which magnets can be used for but two areinterstitial cystitis and vulvodynia. So rare that people even know what they are! The third site you may want to look at is - www.tnp.com/therapy.asp?ID=1. It also hassome very interesting info about the use of magnets for pain. PS Would like to use the chat rooms but obviously not possible with the timedifferences!
Comment2 things I want to say after reading some of the above posts: I mentioned in the last guestbook that a lot of patients with vulvodynia are sensitiveto creams containing propylene glycol. My doctor told me this first hand, and someone elseapparently heard of it since they posted it recently. Be careful... Although when I was inpain it was hard to tell if it was the creams or just another day at the vulvodynia beach. Lynn: Anti-depressants didn't help me "back in the day" but I know a coupleof patients who WERE helped by them. 1 day of Zoloft is not good enough. It will certainlynot worsen your vulva pain and the sleepy reaction to the meds usually goes away in aweek. It did with me... My doc had me take mine at bedtime. Also, if this med is going towork it can take up to a month or 2 to see results.
CommentCan we get an update from some of the people who are seeing Dr. Toth?
CommentTo Jessica: Before continuing on the low-oxalate diet, I would find out for sure thatyour oxalate levels are higher than normal through a urinalysis test. This diet seems towork for a lot of women which is probably why doctors prescribe it but I don't think it'sthe root cause of pain for everybody. My doctor put me on it before ever testing to see ifit was necessary. I have now ordered the 24 hour urinalysis to find out for sure if I fallinto this category. Some women seem to be able to link eating certain foods directly totheir level of pain. But like you, I cannot say for certain that what I eat affects mepositively or negatively. One thing that I found frustrating was conflicting information about what is high inoxalate. I reffered to four different sources for info because it was difficult to find areally complete listing. While all the sources I found seemed to agree on some key foodslike berries, whole wheat products, spinach, etc., they often varied on others. Froexample, one source would put tomatoes in the high catogry, another in the medium. Iactually found one source that stated the oxalates in raw food are harmless to the bodyand it was only necessary to avoid the cooked veggies, fruits and grains that wereconsidered high. I also saw a lot of brand names mentioned. Sometimes a particular brandof a product would be in the high category, while a different brand of the same productwould be in the medium. So it makes you wonder if your brand isn't listed anywhere, is itsafe to use or not? I also wondered about products made or flavored from high oxalatefoods. Strawberries are a definite no-no but what about strawberry flavored ice cream orstrawberry syrup ? I found the diet hard to follow because of these things. Plus, I wasn'texperiencing a noticeable reduction in pain. I think those of us who haven't seen definite, clear results from avoiding high-oxalatefoods should probably focus our attention more on just eating well overall. Rather thanworrying so much about the oxalate levels, I try to ask myself, 'is this good for me?'instead. We all know that chocolate cake with double-chocolate-super-fudge icing is notthe healthiest thing you can eat. Raw fruits and vegetable are healthy. I also believethat the meat and dairy products the oxalate diet advocates are not the best foods aperson can put into their body. My point being - the oxalate diet, like EVERYTHING ELSE,works for some, doesn't do squat for others. Seriously give it a try and give it sometime, at least two months. It is helping a lot of people and it's a non-invasive treatmentand doesn't involve drugs, creams, etc., so it's proabably harmless to try. But if after afew months you don't see results or notice a 'pain pattern' related to particular foods,this is probably not your answer.
CommentFirst, just a hello to everyone. I've been reading this site daily for months, but haveonly posted once or twice when I thought I could be helpful. I am responding to the person who asked about DR. TOTH. I traveled from Philadelphia to New York to see him at the beginning of May. He took athorough history, and cultured me for Mycoplasma, Yeast (though I don't know if thisincluded a-typical), aerobic bacteria, anerobic bacteria, and Chlamydia. The cultures came back showing an overgrowth of Lactobacillis acidolophus,Lactobacillis jensenii, and Actinomyces israelii. Toth said that these are all part ofnormal vaginal flora, but were extremely overgrown, and that could be causing my problems. He wanted to first try oral antibiotics, and if I got any relief with these, we wouldmove on to IV antibiotics to really wipe out the problem. First, I tried Augmentin. I took it for one week, and after I experienced no change inmy symptoms, we switched to Clindamycin. I took that for two weeks with no relief insymptoms. I spoke with Dr. Toth again at the end of that treatment and he said that he did notknow what else to do for me, he was very disappointed that I did not get a break in mysymptoms. He told me to contact him in the middle of my next cycle (which is this week)and see if any thing has changed with me (it has not). In theory, most of what he said sounded perfectly logical. He has some very interestingtakes on bacteria. There were a few things I did not believe, but overall his ideas werefine with me. He told me that the three bacteria that he found are part of normal vaginal flora, andI have found contrasting information regarding the Actinomyces. Also, a lactobacillisovergrowth would typically produce symptoms consistent with cytolitic vaginosis, symptomswhich I do not have. I will try to speak with him at the end of the week and will update here as to what hehas to say at this point, but I get the feeling that there is not much he can do for me. I think REALLY GOOD CULTURES cannot be overestimated for women with problems such asours, and they may be the way to find the exact problems and cure many people, but I don'tthink we all suffer from the same problem, so it won't work for everyone. Oh yes, I should say that I have had my symptoms for 13 months now. They are allexternal: bright red, sore tissue that is always (and I do mean always) irritated, andfrequently burns. It does feel like it should be an infection, but at this point I'veexhausted those routes of treatment. I'll post again if I find out anything else.
CommentChristine, have you tries the Nizoral? I have been on it for 9 days, and am seeingresults. Dr Davis (Arizona) prescribes, 200 mgs for 7 days, 200 mgs every other day for 7days, 200 mgs every third day until finished. My gyn prescribed 200 mgs for 30 days, whichI think is a lot at once, so he is having me try it every other day after the first week.I have had burning for years, and this is helping. I don't know what it will do when Ifinish but it's one day at a time. I may try the Diflucan so many days a week if itreturns. Avoid sugar. I can't tell you the flare ups I get from the yeast in it. It isokay to have it occasionally but overdoing it will never get rid of the v.v. I hope youtry it. I thought it was a life sentence. This gives me great hope. Nizoral is verypotent, so use under a physician's care. I hope that you find the answers you are lookingfor soon. Laurel
CommentTo Laurel and others: Thanks for info on the low oxalate diet. I'll follow it seriouslyfor a few months and see if I notice any changes. Bye, bye chocolate.... :)
CommentLaurel, is there any point in Christine trying Nizoral if Dr. Toth found no yeast?Christine, did you take anything to prevent yeast when you were on the antibiotics? DidToth do only one set of cultures? Is it possible the bacteria overgrowth caused theinitial problem, but now you have yeast?
CommentHi again all - I thought I should share my medication information with you. Since this began, I have never tested positive for ANYTHING except for what Toth found.Right at the beginning I was tested for HIV, Syphillis, Hepatitis, Yeast, BacterialVaginosis (Gardneralla), Trichamonias, Chlymidia, etc. (please excuse the spelling!) Thenthe guessing began: Terazol for yeast, 3 tubes; Flagyl, 1 week course orally; Diflucan,one or two at a time, finally a few weeks course for a total of about 30 pills over thecourse of last summer. Then there was a vulvar colposcopy and vulvar biopsies searching for skin conditionsand HPV. There was inflamation (no kidding!) but no disease. New doctor: Oral Nizoral for 4 months, estrace cream, estrace cream mixed with aloe& lidocane, triple-sulfa cream (at my request because I was insistant that there wasan infection that they were missing). New doctor: Diagnosis, I've been "overmedicated". Elavil, which I increasedto 110 mg daily, and topical steroid cream. Finally, Crisco (yes the stuff you cook with)externally to protect the tissue and let it heal. The Crisco did nothing but ruin myunderwear and the Elavil made me stupid and constipated. New doctor: Physical therapy. Eventually thinks she sees "something" thatdoes not belong there on a wet mount. Cancels the physical therapy and puts me on 2 weeksof oral Cipro, an antibiotic; 2 weeks of Sporonox, an antifungal. Back to the Elavil an Crisco people for one last check. They still think I need asteroid, so we try a new one, Temavate. Nothing. So, new estragen cream. I said I alreadytried that, they said they wanted me to try another brand. Useless. Then came Toth, which I already explained a few posts above. Now I'm with an office at Graduate Hospital in Philadelphia. They believe that this iseither a dermatitis or vestibulitis. First we tried a new ointment called Protopic, itworks like a steriod for poeple who cannot tolerate steroids. It, like almost every othertopical medication I have tried was too irritating to stick with. We have now moved alongto something called Atropine cream, something that the hospital pharmacy makes. I've onlyused it for a few days and so far its not irritating; however I don't feel any bettereither. During the course of the past year I have had both a staph-infection and Molluscum. Atthis point in time I believe they were both contracted in doctor's offices, rather thansexually, as my partner had neither of these conditions. I have been in a monogomousrelationship since just before my symptoms began, and did not become sexually active untilquite a few months into this mess. At this point, I am in contact with doctors and theirinstruments more frequently than my boyfriend, so it's no miracle to me that I've keptthese "secondary" infections to myself. If it sounds just a bit bitter, it's because I am. I'm 36 years old, I'm reasonablyattractive and in good shape. I've never had health problems like this. The past 13 monthshave made a nightmare out of what is otherwise a really wonderful life. Just for the record, I tested everything elimination thing I can think of, triedchanging brands of toilet paper, laundry soap, blah, blah, blah . . . I have no pain, per say, just raw irritation externally. The first few doses ofDiflucan were some relief, but it was temporary. Diflucan can fake you out with the reliefbecause the drug also has anti-inflamatory properties, so its hard to know what is doingthe trick. I also felt better with the triple-sulfa vaginal cream, but only for about 5days, then the symptoms returned before the prescription was gone; same story with theoral Cipro. I do not have flares, the irritation maintains a constant level. I do not seem to beable to do anything to effect it. I am able to have sex but not too frequently; it'suncomfortable rather than painful. I think that's it. I'm definately interested in any feedback you all have. I apologize for the length, thanks for reading.
CommentHey everyone, Just a comment on the magnet therapy. I have been doing the magnet thing too. My motherand law works for Nikken and she has me using a magnetic water filter in my shower ( Ifelt a huge difference water dosent burn anymore), and a magnetic blanket that helpsregulate body temprature and ph. I am also using a magnetic chair coushion and mattresspad. I know that the magnetic water filter is working for me, and I am pretty sure theblanket is doing me good too. Lynn: When you log on to the chatroom and it says the stuff about new groups and stuff, Ithink it is asking you to join yahoo. I had to do that to use the chat room and to vote onvarious polls people created on the list serves. Jennifer: Just wanted to comment on something you said a while back. I feel the same way faithwise. I dont think God is punnishing me, and I dont expect any good works on my part tokeep bad things from happening to me. Bad things just happen. But I do belive that Godanswers our prayers, its just not always the answer we want. Just as you were saying, I amnot trying to offend or push religion on anyone, just wanted to comment on what you said.But no matter what our belifes, giving up hope, and faith can be a sad thing. With outhope what else is there? Christina
CommentWell it has been awhile since I have posted a message, I think since the FourteenthGuestbook. Things have definately progressed in my favor. I have had Vulvar Vestibulitisfor almost 3 years now but it looks like I am almost out of the woods. Right now my doctorhas me on 75mgs of Effexor per night, which at first made me sick but once my body gotused to it I was fine. Effexor definately helped me improve about 40%. I have had lazersurgery once which is no big deal, my husband and I were able to have intercourse the verynext evening. With the help of lazer surgery I have improved about 50%. I am scheduled forlazer surgery again on July 25th. My doctor says it usually takes about 2 or 3appointments before I am painless. My insurance has covered it all so I don't have to payfor anything. I am hoping after this next appointment, I will be fine because my husbandand I want to have a baby. If you want to know more about my lazer surgery or the name ofmy doctor, email me. I live in Washougal, Washington.
CommentChristine, you are very courageous. Also, I like that you are willing to try differentmethods of treatment. I personally think that the antibiotics could be hurting you. I amsorry that the Nizoral did not work either. However, I am feeling better with the Nizoral,but eating the wrong food, especially the sugar and flours, doesn't make a difference evenwith taking the medication. The burning comes back for a few hours, although not as bad.Still discomfort nonetheless. Are you following the special diets? Best of luck. laurel
CommentForgot to answer Karen's question. I was tested for yeast as well, but I think they didnot identify the type I had, since the tests showed nothing. With this disease, it is justso hard to say what the heck is triggering it. But many find relief for some reason withoral antifungals. I just hope that they find something soon. It is frustrating the mostduring the summer months when it is hard to travel. Tomorrow is my son Justin's 5thbirthday. I have to travel to the coast, which is only about a half hour. Then I have towear a bathing suit on the beach, and have to cook myself a special dietetic meal when theothers have hot dogs, burgers, and cake and ice cream. It sounds so simple, yet for us,our well being depends on it. Very sad and frustrating. Best to all of us!
CommentThe next meeting of the Israel Vulvodynia/Vestibulitis Support Group will be on FridayAugust 17 in Tel-Aviv. For information call Judy 02-5631193 or Tamar at 053-387146.L'Hitraot
CommentHi RS, just wanted to let you all know that I'm still doing okay(knock on woods). Thevanicream is helping me. But I'm still concerned with the top of my vulva underneath theclitoris. That part still gets discomforted sometimes even when I don't eat any highoxolates foods. But the burning and the itching that I felt after I sat in that HOT tub,it has subsided for sure. I'm still not completely satisfied though because I still don'tfeel completely as good as I felt before I sat in the HOT tub. Question: Do you all know of any celebrities with this condtion? Do you think that ifthere were some with it, you think they'll speak up and out about it for us? Or do youthink they'd be too good or even too embarressed to even mention it? I can't believe thatus non celebrities only suffer. I hope this is not a stupid question but I just alwayswonder about it. I mean because you'd think that a celebrity would be able to bringknowledge, awareness and support about it, more than we can anyway.
CommentLynn, I have often wondered the same thing myself. If you think about it, there has tobe AT LEAST one famous person with this condition. I mean, we don't know even 1% of whatgoes on in Hollywood. I don't think it has gone public because people will just assume itis a STD. The tabloids would have a field day. I don't think it is the embarrassmentaspect, just ignorance. And the fear of not being able to get a job. It reminds me of aguilty verdict handed down last week in Massachusetts to a renowned allergist. His wifewas murdered last year in a wooded park near their home. He claims they went for a walk,but she went in a different direction. He found her in a pool of blood (the evidenceagainst him was overwhelming). Needless to say he was the prime suspect. It may have madenational news as well. I guess she found out about his goings on with escorts, andstrippers, etc. Supposedly, he murdered her because she found out and it would havetarnished his career. Anyway, not to get off the subject, but he claims he did thisbecause she was unable to have sex with him because it was too painful for her. That's allthat was reported in the media. No details. Kinda makes me wonder if she had vulvodynia orvestibulitis. I almost wished the word vulvodynia got mentioned. Okay, enough. Glad youare better. Happy 4th of July all! Laurel
CommentWell, I can't tell all of you enough how happy I am to have found this site! I likemany of you have been suffering from Vulvodynia for almost 3 years and have not been ableto find a physician who will listen to me! I would like to hear from anyone who alsosuffers from extreme rectal pain in addition to the vaginal burning, pain and itching? Thetwo seem to go together for me and I have not been able to read a lot about this?Estrogencream seems to kinda help.I am 40 years old and had a very bad vaginal delivery 9 yrs agowhich resulted in severe rectal tearing and 2 corrective surgeries 6 months later! I canbe reached at soulmate129@hotmail.com My name is Suad Picardi and I am waiting for amiracle cure, as I don't know how much longer I can continue to live like this! Good luckto all of you!
CommentHello ladies: I've been silently reading lately. Lynn asked if any celebraties sufferedwith vulvodynia. I am willing to bet there are some who do and yet do not go public withit. Richard Roundtree " Shaft " of movie fame suffered from breast cancer, muchless common in men but still a health risk . He had surgery and suffered in silence inorder to work in hollywood. People who depend on the public's perception of theirsexuality and appearance often keep hidden their health problems. Understandable that theydon't want to risk their jobs and at the same time sad because they have the opportunityto reach so many. Mr. Roundtree did go public with his story years later and I'm sure hedid alot of good. Maybe some day one of these brave ladies will come forward, it will pavethe way for others. Don't think anyone is immune from this disease, they just don'tdiscuss it. Best to all.
CommentHi eveyone! Lynn, I bet you money that there is a celebrity somewhere with vulvodyniaof vv. Surely it couldn't just happen to average people. I'm glad to hear that you aredoing better. I'm just hanging in there. My mother and husband are very worried about me.My mother and I live a couple of hours apart, and she has been calling me @ work and homelike 6 or 7 times a day. My husband said for the last couple of months I just haven't beenmyself. I know that I haven't. No one can understand what I go through everyday. My motherblames the doctors, but I keep telling her that there is just no cure for this. She haseven suggested these home remedies that they used to use back in the day. I'm too scaredto use most of it. I'm always hoping that a better treatment comes for this. My whole lifehas changed drastically. I know that I have been down for a few months now because now Iknow that this is just not going to go away. Maybe I need to get back on ananti-depressant. I used to think that I was so strong, but now I'm not so sure about that.It amazes me how one day you can be fine, then the next day, you are burning like hell.Lynn, by the way, I am supposed to be in Phoenix from July 25-27. I keep saying supposebecause I don't even know if I can take the flight. I hate that. I love to fly. Hopefullyone day, something will come along to help me. Like someone said before, without hope whatis there?
CommentMy heart goes out to you, Christine. The steadiness of your pain strikes me as unusualin vulvodynia, but maybe it's more common than I think. Do you associate the onset withanything in particular? Can you find or have you tried a good physical therapist? Thebeauty of this treatment is that he or she can examine you and tell you quickly whetherthey can help you or not, and the relief is pretty immediate, as opposed to all theseother things that take months or never bring relief. The difficulty is in finding atherapist with experience in vulvodynia.
CommentHi everyone, I've only posted once before. Just to let you know, I've just sent arequest on the Oprah website to see if they will submit an article in "O", oreven better do a show on the topic. This condition really needs to be addressed as itruins millions of women's lives. I'm tired of having a condition that I can't discuss withanyone because it's embarrassing and extremely personal. Keep your fingers crossed ladies,they will let me know if they are interested in the topic...
CommentThanks Laurel and Karen for reading my posts. Thanks to Jennifer as well. Yes I have done Physical Therapy with someone trained in pelvic floor disorders, buteven the therapist did not seem to think I had any great problem. She checked me out andhad me do that "Squeeze Thing" with some sort of meter that was insertedvaginally-she actually said my muscles were in good shape. Jennifer reminded me that there is something I should have added. This problem startedfor me in May 2000; and from August 1999 through February 2000, I was having sex with aguy whom I NEVER made use a condom. The problem began two months after I got rid of him. Even though I have tested negative for everything under the sun, I have a hard timebelieving that those 7 months of stupidity are not somehow at the root of my problem. Ihad NEVER in my life had such careless sexual relations with anyone before. And just forthe record, I was not feeling guilty or anxious about that relationship until my problemsbegan. I know about 20/20 hindsite, and that there is nothing I can do but go forward,blah,blah . . . But there are definately days when the regret is unbearable, which I'msure is not helping. So, no I have not tried any special diets. In my case (but I am just speaking formyself) I feel that it is ridiculous that one afternoon I suddenly became allergic tosomething, or suddenly could not tolerate part of my regular diet. And that is just how itall started, suddenly one afternoon, walking home from work. Thanks again for your feedback. Is anyone out there living near the Philadelphia area?
CommentThe way the diet sometimes works, in my understanding, is that oxalates irritate skinif it's already irritated. In other words, you don't become allergic to somethingsuddenly, but, given a previous irritation triggered by something else, high oxalates canprevent you from healing. In these cases, once the tissue has regained its normalcondition, you can carefully reintroduce almost all the foods you eliminated on the lowoxalate diet again without consequence.
CommentChristine, there is no need to dwell on what you did, mostly because you aren't theonly one, and also because no matter what you do, you can't reverse it and do it again.The most important thing is to concentrate on getting well, moving forward. The fact ofthe matter is, the times I did use a condom I was making myself worse. I would literallyswell up like a balloon from the latex or the spermicide. So that was one problem. Theother was that I was so fearful of them, I risked not using them, ended up with abacterial infection, and voila! here I am now. No doubt the flagyll! I still thinkvulvodynia is a resistant yeast or germ of some sort. For some reason, we just can't fightit off. The Nizoral is doing a remarkable job for me so far, but I can't stay on itforever. And as good as I am doing, I still get discomfort, albeit much better, and itgoes away pretty quickly. Sitting sets me off no doubt. I hope that a breakthrough comessoon. Please don't kill yourself thinking about what you should have done. Even marriedcouples get these problems. I hope this helps your spirits a little. Be well, laurel
CommentJoanna: Thousands of women have written to Oprah begging her to do a show onVulvodynia, and she has turned a deaf ear to our pleas. Unless she gets Vulvodynia, Idoubt that she will do a show on it or feature it in O magazine.
CommentTo Christine: I agree completely with Laurel, even married couples suffer withvulvodynia. Safe sex is a great idea but from what we have read and our own experience itdoes not prevent vulvodynia. Try not to dwell on whole sex and morals thing, it's anowhere place. Concentrate on getting better and being as pain free as you can. I wonderhow Oprah would deal with a friend having vulvodynia? Would she just not discuss it? Theday will come. Take care.
CommentHey everyone, I am just posting to let those of you from Minnesota in the Twin Citys area know abouta local support group we are starting. It is a support group for women who are sufferingfrom any vulvar dissorders such as vulvodynia, vulvar vestibulitis, chronic bacterialvaginosis, and Lichen Sclerosis. We will meet once a month on a Thursday at 7:00. Thefirst meeting will be on the 12th. There are 4 of us so far and we are hopeing more will join us. If you would like toknow more about or little group, location, directions, etc...please email me at: christina_bunny@hotmail.com I hope to hear from you, Christina
CommentNicole, I just read your post after leaving my last post. What state do you live in? A group ofgals and I are starting a support group in MN. Otherwise I belive that you can find some support groups by checking on the NVA or VPFwebsites. Unfortunatly there are not many. Thank God for the Internet. Christina Bunny
CommentHi all, I'm glad you guys gave me your input about whether celebrities have thisdisease or not. It just doens't make any since for then not to bring awareness to it. Theyhave more power than we do to bring awareness to it. Stephanie C. Hey girl, I wish you were doing better. You always seem to have nothingbut bad days. I wish you'd getter better at leat a little better. Are you still hurtingfrom when you got in that pool? I hope you do come out here. I'd like to meet you and ifyou do come, then I'll email you my # and we could talk once you get out here( if that'sfine with you of course) Anyways, I'm doing okay. My husband has talked to me and hasconvinced me that if I don't pray and have faith, then things will get worse for me. I'vebeen trying to pray and all that. It's kinda hard, but I'm doing it. I'm doing okay still.I'm just hangin in there. Hey Laurel, I just wanted to tell you that when ever I drink Coke soda, it makes mynerves tingle all throughout my body but it seems to numb my vulva. It does't hurt me downthere at all. That's strange huh? Well I got to go guys. I'll talk to you all later.Goodnight
CommentHello Ladies. Over the last few years I have contributed to this site occasionally withtreatments I have tried and the short-term relief (or non-relief) they provided. I first had signs of V V about 9 years ago. I tried all the lotions, potions, tabletsetc and generally nothing worked. I ended up trying an anti-depressant which completelygot rid of the symptoms but I knew hadn't got rid of the cause. I was on theanti-depressant for about 18mths, and have recently come off them completely as I havecompleted a course of Active Release Therapy (ART). I know a few other ladies which have posted letters on this site have tried ART andgenerally the results have been very good. For me personally I feel the ART has cured me. I know it is early days yet, but I nolonger have any symptoms and I have been off the anti-depressants completely for almosttwo weeks. I know that doesn't sound like a long time, but once before while I was weaningmyself off them, the symptoms flared up very quickly, and that was while I was stilltaking a small dose, so consequently I went back up to my normal dose. The ART has loosened very tight muscles in my back, hips and buttocks which apparentlywere pinching the genito-femoral nerve which branches off into the genital area. As thisnerve was pinched it was causing alot of pain in the genital area and hence all the V Vsymptoms. Apparently only certain chiropractors are trained in ART and unfortunately there isonly one in Australia, who is Dr James Robinson in Canberra (very luckily where I live). I have noticed a huge, wonderful difference since the muscles have been loosened, andto have no symptoms flare up again seems like a miracle. If you have not considered ART, Iwould seriously think about it as my results have certainly been fantastic. I am now undergoing a course of acupuncture to help with keeping the muscles relaxedand getting the energy within my body rebalanced. I know that probably sounds a bit weird,but, hey, it's working, I feel great and I know I am able to treat the problem in anatural way. I will place my email address on the list, so if anyone wants more information, pleasefeel free to contact me. Take care ladies, and please give ART some thought.
CommentChristine, please don't beat yourself up. You know...if you were totally symptomlesswhile with that guy (the one you did not use a condom with) I doubt you "caughtit" from him. Basically you said you became sick after him. Unless he cheated on youthe last few days you were sexual with him, and then you developed this thing from there.Although I do relate mine to a new sexual partner, it started off not so bad and then gotworse...but I knew something was wrong fairly soon after I stopped using a condom withthis one guy. I know I go on about the infectious thing, but then there are many womenthat DO NOT fit that profile. Don't beat yourself up...people every day don't use condoms, some are lucky somearen't. We are all human, stop judging yourself so harshly, no one here is judging you.
CommentHello Ladies: While my wife was at work I got a call from one of the Doctors she hasbeen trying to reach. We live in Ct and this Dr. is one of the top people in Boston. Ispoke to one of his assistants a lady. I wasn't sure who my wife had called so I asked ifthe Dr. was a Gyn and the lady said no he is a Urologist. I briefly explained the problemwith tearing and raw patches of skin, she said the Dr. primarily used surgery to treat theconditon of vulvodynia. That is no treatment in my opinion, surgery to form a new scarwhere the tear occurs did not change a thing. What kind of surgery would resolve all ofthe raw areas? Do you remove the clitoris if it has a raw section? These folks scare me,where is the real research being done? Please be careful with the Dr. you choose and readsome older Guestbooks. Best of luck to all.
CommentHi... I am one of the people who saw Dr. Toth. I know Christine had posted about herexperience, so I thought I would post as well. I was diagnosed with vestibulitis lastyear. The first Dr. I saw was Dr. Marinoff in Washington DC. He put me on amytriptyline,which helped for awhile but my symptoms came back. I then went to Dr. Peacocke, in NYC, who treated me with oral Clindamycin (antibiotic)and Diflucan, and then boric acid inserts. I felt much better after her treatment, so goodin fact that I began having sex with my husband. Then my symptoms started coming back. Idecided to see Dr. Toth because I knew he had a more sophisticated method of doingcultures and he also tests and treats both partners. Dr. Toth's cultures showed that I had an anerobic bacteria, Actinomyces israelii, andmore importantly my husband's culture had 2 anerobic bacteria and chlamydia. Toth saidthat the reason I didn't test positive for chlamydia was because of the clindamycin I tookwith the last Dr. I proceeded to do an antibiotic IV, and my husband took oralantibiotics. I decided to do the IV because I am trying to get pregnant, and I wanted tomake sure I got rid of the bacteria. The antibiotic treatments have definitely helped my vulvodynia. I no longer havedischarge. I can wear jeans now and it doesn't hurt. I am not totally 100%, but Dr. Tothsaid it would take awhile for my immune system to calm down after the treatment, so I amhoping for more improvement. The issue I am currently experiencing is that my period hasgotten lighter, I went from 5 days to 2 1/2 days and I have some problems with dryness. I decided to try some acupuncture as well to see if it would help get my period back tonormal. The acupuncturist who examined me said I have a weakness or deficiency in myblood, and is treating it with a combination of acupuncture and herbs. I have only had onetreatment so far, which was good, so I am going to continue and see if I can get my periodto be more regular and the dryness to get better. I think that Toth's treatment has helped me, but I think that the best resolution forthis problem may come from seeing not one doctor but a combination of treatments. I thinkyou need to try and get your body and your immune system free from bacteria,yeast,whatever and back to health. This is a complicated problem, and it is not going to have aquick fix. Keep trying, and be determined to get some resolution.
CommentPS- I just wanted to add that Dr. Peacocke's treatment did help me very much also...Ijust decided to go to Toth because I felt that my husband & I were passing this backand forth. She also treats with antibiotics, although her treatment differs somewhat fromDr. Toth.
CommentHello, everyone! This is my first time contributing here. My story is similar to manyothers I read - last year I thought I had a yeast infection and used some over the counterstuff. This past January, my doctor said it wasn't yeast, but BV, and prescribed Flagyl.After that, my symptoms got quite severe ( lots of discharge and stinging), so we triedTerazol, which did nothing but cause worse stinging. The next treatment was a long-termtreatment with Cleocin, which initially seemed to help but then I started to experienceburning even during the treatment. I then started doing some research on the web, and learned about vulvodynia.Interestingly enough, I've had a few bouts of sciatic pain down my leg over the last year,and recently read that there might be a connection between that and vulvodynia. At my lastdoctor's appointment a few weeks ago (which I made because of increasing burning), Imentioned to her that I thought I might have vulvodynia. She said that she really didn'tknow a lot about it. She didn't see any BV or yeast, and couldn't really see why I washaving discomfort or burning because everything looked normal. I told her that I'd readthat Elavil sometimes helps, and she prescribed a low dose (which I've yet to take becauseI'm afraid of the side effects). She also referred me to a gynecologist who specializes invulvovaginal infections. I haven't made an appointment with him yet, because I'm not sure if this is the kind ofdoctor I really need to see. I don't feel that I have an infection now - I don't have muchdischarge, even though it seems to sting more when I have what I think is the usualdischarge during ovulation. My symptoms are mainly a feeling of discomfort or chafing whenI sit, and some burning/stinging pain that comes and goes in various areas of my vulva atdifferent times - sometimes my vaginal area, sometimes near the pubic hair area, etc.Usually when I wake up in the morning, I'll feel all right, but as the day goes by I startto feel the discomfort. The week before my period and the 2 or 3 days after (when it'stapering off) are the worst times, but I have some days that are very bad and others thatare semi- o.k. all throughout my cycle. Wearing loose shorts and sitting on soft pillows seems to help. Using A and D ointmenton "chafed" areas provides a little relief at times. Also, Cottonelle toiletpaper is the only kind that doesn't cause extra discomfort for me. I've read about the lowoxylate diet and am trying to follow it. I also read that citrical can help, and I'd beentaking it anyway, so I upped my dose to see if it helps any. I was wondering if anyonecould help me with these questions: 1. Should I see the doctor who specializes in infectious diseases? Would he be avulvodynia specialist as well? 2. Does anyone know of a doctor in the Houston, Texas area who specifically specializesin treating vulvodynia? 3. Why do so many people gain weight while on Elavil? That's the main drawback I seewith it - having this problem is depressing enough without having to deal with weight gainas well. 4. Why do so few doctors know about vulvodynia? Reading the guestbooks here, it seemslike many, many women have it. Well, sorry to go on and on. Finding these guestbooks and reading your stories andcomments really has helped me, because recently I've felt so alone, afraid, and vunerable.My husband has been wonderful and supportive, but it's hard to describe to even him whatit's like. Thanks for "listening".
CommentHey Lacey, I moved to the Houston area from Iowa. I live in Katy and we have been hereabout a yr and half. I haven't found a specialist either that specializes in VV, if youfind one please let me know. My gyn is Patricia Thayer and she doesn't know anything aboutVV either other then it exists. Please let me know if you find a Dr here in Houston. Chris
CommentFRANK-- i just read your last message about the male doctor in Boston rushing your wifeinto surgery. was his name dr. Michaelwizt? (i do not know how to spell his name). i sawhim last march, and he was completely insensitive to my feelings, and he wanted to rush meinto surgery as well. he had no humanitarian nor intellectual interest in the disease, andhe acted as if he just liked to play games with women. he refused to respond to thereasearch i had done, and the questions i had. later, i was talking with some women inBoston with vv, and they said he had the worst reputation around town. please please calldr. stewart instead. how did he get the name of specialist?
CommentHi, I know I am not supposed to be posting questions in the guest book, however, I havetried many times to join your e-mail lists and every time my question is returnedundelivered. So.... I hope someone can answer this one for me. I have both interstitialcystitis and vulvodynia. I have read that yoga is helpful for both problems and would justlike to know if there are specific positions that are most helpful. Thanks, Kim
CommentTo D: The Dr. was Goldstein a urologist. He wasn't rushing my wife into anything,rather his office just explained that surgery was his form of treatment. Like I said in myprevious post how do you operate on raw areas of the vulva including the clitoris? I don'tmean to sound disrespectful but it makes no sense. I can understand if there are somevestibular glands causing pain and surgery seems to be the final step but to use it as atreatment for all cases doesn't do it for me. My wife was really just trying to speak to atop person in the field and get a referral for a Gyn here in Ct. She has decided to get asecond opinion. We haven't been intimate for a couple of weeks and when I looked at hervulva I was shocked at how small her labia have gotten. I have asked her to question anypotential Dr. as to their willingness to perform certain tests. I'm sure hormones play apart in my wife's case. Don't be bullied into surgery or drugs, consider a second or thirdopinion. My best to all.
CommentHi all, just wanted to say that I'm still trying to give this Praying and Having Faiththing a try. So far, I'm doing pretty good(knock on wood). I hope things get better for usall. Thanks for the informationg about the ART. I'm going to consider that if I feel theneed to in the future.
CommentFrank, have you ever been to see Dr Elizabeth Stewart in Boston (West Roxbury)? Shespecializes in vulvodynia. Perhaps she may help you and your wife. If you do call, thereare 2 Dr Elizabeth Stewarts. On is at Brigham and Woman's. I made that mistake, but theywere kind enough to give me her number. Must happen frequently. I heard the waiting listwas well into September, but when I called and told them a bit about myself, they put mefor July 27th. My gyn thinks it is well beyond his capapbilities at this point. I thinkthey just don't want to learn about the condition because it is so puzzling and timeconsuming. Having said that, he really is a wonderful obgyn otherwise, and I will keep himfor future babies! Anyway, I have heard good things about her, so I thought i'd butt in.Hope it helps you. For the woman who mentioned the doctor M? in Boston, you are not theonly one who has had a complaint about him. I have read that a few times now. enjoy theweekend! laurel
CommentTHIS INFO IS FOR FRANK. I found this info and it sounds like what you have describedyour wife having. Hope you find this helpful. Squamous Cell Hyperplasia Squamous cell hyperplasia (hyperplastic dystrophy) is an abnormal growth of the skin ofthe vulva. Two thirds of patients are premenopausal. It has a variety of appearances. Itmay present as a pink or red vulva . It frequently appears as elevated white patches.Moisture, scratching, scrubbing and medications may cause variations in the appearance ofthe lesions. The size of the lesions ranges from small to extensive. The areas mostfrequently involved are the hood of the clitoris, labia majora, outer aspect of the labiaminora and the posterior commissure. Lesions may also extend to the lateral surface of thelabia majora and even to the thighs. When the skin becomes too thick, hardened patches onthe vulvar area may appear. This is related to chronic irritation. A biopsy (a minorsurgical procedure to remove a small piece of tissue that is then examined under amicroscope) is often performed to diagnose this problem. Many things can trigger itching on the vulva. The itching generally stops when the skinheals. Remember that it took a long time for the squamous cell hyperplasia to develop, sodon't expect it to improve overnight. It is often chronic and may require long-termtreatment with steroid creams or ointments. These are rubbed into the vulvar tissue.Squamous cell hyperplasia is sometimes observed next to lesions of invasive squamous cellcancer, although the risk of development of invasive cancer for women treated for squamouscell hyperplasia without vulvar intraepithelial neoplasia (VIN) is minimal.
CommentThankyou so much to the last two ladies who offered some help. I researched the termand found this site Http:news.medscape.com/imng/skinallergynews/19 I hope that gets youthere the article name is Three keys To Treating Vulvar Hyperplasia, and it was veryinteresting. I will pass it along to my wife and hopefully she will show it to her nextGyn. Thank you for the caring. Frank B.
CommentHas anyone used Replens for vaginal dryness? Estrogen cream isn't doing a thing forthat.
CommentHello everyone! Lynn, you are right. It seems that all I have now are bad days. I wentout of town this weekend, and I burned all the way there. It was only a 2 hour drive.That's why I'm so scared to come to Phoenix. I really hate to have a bad trip. I think theplane ride will be about 2 hours. Something good did happen for me this weekend, I wasable to have sex with my husband 3 days straight without hurting. If I could stand up allday long, I think I would be okay. I feel a lot better since I got in the pool. Now, I'mnot so sure if it was the water or not. I just could have been having a "bad "day. Lynn, I will not push my religion on you, but I think right now that is the onlything I have. I pray for all of us that one day this pain will be removed or someone willfind a cure for this. I'm not selfish in my prayers. We all need some relief. I will letyou know if I decide to come to Phoenix, and of course I would love to meet you. Take careeveryone.
CommentStephanie C, your pain is just like mine. You seem to be cyclical too. I can be finefor 3-7 days and then BOOM! And I am usually fine, standing that is. The Nizoral that I amtaking is a miracle drug for me. I am saddened that it will be gone in 2 weeks. I am notyet 100%, but probably close to 90%. And I have had this condition for years. I think youshould discuss it with your gyn. My appointment with Dr Stewart is in 2 weeks, so I amhoping I can take it in small doses after the initial trial, since many find don't findrelief until after several weeks to months. I am also going to see if she thinks Eddieshould take it, so it (the yeast) isn't passed back and forth again. I can't believe thethings I have been eating for the first time in years, like cakes and pastry (nochocolate!), of course not overdoing it, but this truly is a miracle. I think it may helpsome us as well. Hope it gives you hope. Let me just add that I will never consider myselfcured, it will always be in the back of my mind, and a yeast is very hard to get rid of,many times building it's strength up again. But, weekly doses seem to keep it in check fora great number of people. I continue to pray for a cure, and you are all in my thoughtseveryday until we beat this once and for all. Be well, laurel
CommentHi all - Thanks very much to everyone who responded to my posts. I do appreciate yourthoughts. For LAUREL - I just wanted you to know that early on in some of the treatments I wasgiven to try - Nizoral was one of them. Though it did not help me, I do know of someonewho it did help, in fact, cured completely. She had a strain of yeast called T-Glabrata(sp?). It is not in the Candida family and will not present itself on a standard yeastculture. Also, you can have a sub-cutaneous yeast infection which will stay just under thesurface of your skin, and that will not present itself in swab cultures. I've been seeingSusan Spadt in Philadelphia and that is who told me about the under-the-skin stuff. Ihoped she would test me for it, but when she talked about it she said that she had seenenough of it in the past, knows what it looks like, and that it's not my problem. Also, when I was on Nizoral, (Dr. James Lukban, also in Philadelphia) he wanted to keepme on it for 6 months, daily. His thoughts were that you need a very long course of it toclear the yeast from your body; it's easier to clear vaginal yeast, but unless you givemeds a chance to clear it from your digestive system as well, you will simply reinfectyourself. Anyway - this didn't help me, but it sounds like it might be the way to go for you. Ijust thought you might like to hear what I've been told about yeast . . . I hope your success continues - and I hope you get enough Nizoral to clear yourproblems.
CommentChristine, I do appreciate your input, thank you. I know that not everyone reponds tothe same type of treatment. And that is so frustrating. Of course, I knew I neededsomething more than the oxalate diet, HTO, and Ox absorb. I had been on them for years andhad gotten better, but reached a point and was stuck. This seemed to get me over thathurdle. So far, so good, but we all know that we will always have to be aware that it cancome back in the blink of an eye. It is very scary. But, I think the majority of us justlive day to day. If we wake up and have a pain free day, that is a milestone isn't it? IfI never logged on to this site, I may not have discovered that my problem was a yeast. So,I just want to say thank you to all of you for you input, support, and ideas. I appreciateit so very much. Talk soon, Laurel
CommentI everyone, I am new to this website and I think it is great. I was diagnosed withvulvar vestibulitis two weeks ago. It is a huge relief just to have a name for thisproblem that has been baffling my husband and me for just short of a year. It took fourdoctors, but after reading through all your entries in these guesbooks I am completelyconvinced that the diagnosis is correct. Something new, that I haven't read from anyoneelse is this: I have to be tested for diabetes in a couple of days. My doc says thatvulvar pain can sometimes be a sign. I am only 23 and have no family history that I knowof. If anyone can relate to this or tested positive for diabetes along with vulvar pain,please email me sstatkus@hotmail.com thanks.
CommentHello Everyone! Thanks for the information Laurel. I will certainly ask my doctor aboutthe Nizoral. What are the side effects? I know you said that you could only take it for acertain amount of time. I am so happy to hear that you are doing better. Whenever I hear asuccess story, I feel so strongly that something good will happen for me too. Thanks forall the comments, and keep them coming.
CommentFor Stephanie: There are 3 antifungals to use for a yeast infection: Diflucan,Nystatin, and Nizoral. Some don't respond to the first two. Chances are that the yeast isa less common strain like T Glabrata. In that case, Nizoral is used. It is potent. Commonside effects are: nausea, headache, lightheadedness. Less common would be liver damage.Even rarer, anaphylactic shock, obviously the first pill taken. My dosage is 200 mgs/dayfor 30 days or 6 weeks, and then go from there. It is recommended to have liver enzymeschecked periodically. The only side effect I got was a headache, and it went away ratherquickly. The pill should be taken on a full stomach and other than the headache, that wasthe only symptom I had. I strongly suggest giving it a go. You may get burning in theintial stages, which I did a little. It is a signal of a yeast die off. So don't let thatdiscourage you. I really noticed a difference at the 2 week mark. I would strongly suggestgiving it a go, it really can't hurt to try. The Diflucan did not work at all for me, so Ijust assumed yeast was not a problem. Remember to avoid sugary foods, although I can cheathere and there with no ill effects. And stick to the low oxalate diet! Good luck to you.Laur
CommentI just discovered this site although I have had vv for two years this past May. I haveseen multiple docs like the rest of you. this whole thing started with a rare yeastinfection called tropicalis. I saw various specialists in NYC, Philadelphia, andRochester, NY and was put on EVERY imaginable treatment you can guess ranging fromanitfungals, antibacterial meds, antidepressants, muscle relaxers, steroid injections, youname it. Until finally my doc suggested we had tried every medical treatment possibleexcept surgery. I made the decision to have surgery this past February and it has been theonly thing thus far that helped even a little bit. I am still in agonizing pain sometimesand am still very depressed over it, as it is really putting a heavy strain on myrelationship of 3 years; if not for this problem I thinkwe'd be enaged by now. anyway,wanted to know if anyone else has had surgery for vv and how you have progressed so far. Ihave been doing biofeedback and seeing a physical therapist for massage, but I am still ina lot of pain and plan to have additional surgery in a month to remove some other areas oftissue. Please, other surgery patients, write - I'd love to chat.
CommentI wanted to add to Laurel's comment about the different types of antifungalmedications. There are actually more than those three. Two other systematic yeastmedications are Lamisil and Sporanox. Lamisil is a fairly new medication and is mostlyused to treat fungal infections in the nails. But it has also been used for systematicyeast infections. I took Lamisil for three months last year. It helped my symptoms alot,but it wasn't a cure for me. I have also used the Nizoral for three months, and it didabsolutely nothing for me. I have not tried the Sporanox, but I read it is as powerful asthe Nizoral and Diflucan. So far Diflucan is the only medicine I have tried that hasreally worked for me. I've been on it for three weeks now and already my discharge isless, my bottom is less red and irritated, and the pain seems a little better. I didn'tget this condition overnight so I don't expect it go away overnight either. I plan onsticking with the Diflucan until all of my symptoms disappear. And even after that, I willprobably stay on a maintenance dose to prevent a relapse. So, if you're convinced yourproblem is yeast related, then don't give up until you've tried everything. Just becauseone medicine didn't work for you doesn't mean another one won't. I also wanted to make acomment on the Nystatin. Nystatin is not used to treat systematic yeast infections.Nystatin will only treat yeast overgrowth in the digestive tract. Nystatin does not absorbinto the bloodstream and tissues like the other drugs do. So don't use Nystatin alone andexpect it to kill the yeast in your vaginal tissues. I would recommend using Nystatinalong with one of the other antifungal medications. Nystatin is extremely safe and haslittle to no side effects. If you think you have a yeast overgrowth in your digestivetract, then you must kill that or else you will never get better. Yeast from your rectumwill just continue to reinfect your vagina. Just wanted to add my two cents to the yeastdiscussion. Hopefully this information will help someone.
CommentIf you want to chat in the chat room be there at 8pm central time zone. July 11th.
CommentHallo, my name is Martina and I am from Germany. I have had VV for 11 years now. I haveposted in this guestbook once or twice before. Since last year I get yeast infections allthe time on top of the VV. Is that common? Has anybody experienced the same thing? Icannot thake any cremes/ antifungals, only oral medication, but it comes back right away.Another question: Where do you get HTO or the NAG which Dr. Solomons recommended? Myhusband was in the US last month but couldn't find it in any drugstores. I wouldappreciate any comments bye, Martina.
CommentFor Jen B: Thanks for the info. I learned something new! Best of luck. For Martina: Logon to vulvarpainfoundation.org in order to get the medications, it is important ot jointhe foundation. The cost is 40.00 per year and well worth it. You will receive newlettersand updates, and invitations to seminars which are remarkable. Also, you can have yoururine tested by Dr Solomons and he will tell you if the oxalate is a problem and if so,will give you a regimen of calcium citrate. After that, you will receive other methods oftreatment but have to give the citrate a go first. If you want to try the Ox Absorb, HTO,and NAG, he will help you order it, as it can be ordered through him only (except for theOx Absorb). I think he likes to do one thing at a time to see how you fare. He will sendyou a sheet to fill out that tells him what works for you, as each of us has a differentresponse. Also, it is vital to follow the low oxalate diet along with the othertreatments. Patience and one thing at a time, sometimes it can be frustrating b/c you wantto see results quickly, but this is the way to go, so you know which method works for you.Hope this helps and best of luck. Laurel
Comment4 things: 1. I need to find a doctor - of any kind - who knows SOMETHING aboutvulvadynia. I'm from Toronto, Ontario, Canada. If anyone knows anything PLEASE let meknow. My doctor keeps telling me I have vulvar vestibulus even thought I've been tellinghim that my whole vagina hurts! 2. Is it normal to experience pain mostly after intercourse or with ANY friction downthere - even if it only involves a delicate tongue, finger touches, or wiping with toiletpaper or soft towles (I do it so gently and I just pat)? 3. I do get sharp pains shooting up my butt and down my legs ocassionally but apartfrom wearing tight pants there is usually only minor irritation/pain and itching. It onlyREALLY hurts right after and during sex. It doesn't matter when > entering, during,exiting, and lying there afterwards. At the very best I'm slightly uncomfortable. Let'sjust say, both my boyfriend and I are nervous whenever we have sex. 4. You mention something about alkaline vagina fluid. I haven't had myself checked YET,but would the acidity or alklinity of my boyfriends semen make a difference? He's alsodiabetic - would his sugar level have any effect? I hope you can respond soon. Thanks, Susanna
Comment4 things: 1. I need to find a doctor - of any kind - who knows SOMETHING aboutvulvadynia. I'm from Toronto, Ontario, Canada. If anyone knows anything PLEASE let meknow. My doctor keeps telling me I have vulvar vestibulus even thought I've been tellinghim that my whole vagina hurts! 2. Is it normal to experience pain mostly after intercourse or with ANY friction downthere - even if it only involves a delicate tongue, finger touches, or wiping with toiletpaper or soft towles (I do it so gently and I just pat)? 3. I do get sharp pains shooting up my butt and down my legs ocassionally but apartfrom wearing tight pants there is usually only minor irritation/pain and itching. It onlyREALLY hurts right after and during sex. It doesn't matter when > entering, during,exiting, and lying there afterwards. At the very best I'm slightly uncomfortable. Let'sjust say, both my boyfriend and I are nervous whenever we have sex. 4. You mention something about alkaline vagina fluid. I haven't had myself checked YET,but would the acidity or alklinity of my boyfriends semen make a difference? He's alsodiabetic - would his sugar level have any effect? I hope you can respond soon. Thanks, Susanna
Comment4 things: 1. I need to find a doctor - of any kind - who knows SOMETHING aboutvulvadynia. I'm from Toronto, Ontario, Canada. If anyone knows anything PLEASE let meknow. My doctor keeps telling me I have vulvar vestibulus even thought I've been tellinghim that my whole vagina hurts! 2. Is it normal to experience pain mostly after intercourse or with ANY friction downthere - even if it only involves a delicate tongue, finger touches, or wiping with toiletpaper or soft towles (I do it so gently and I just pat)? 3. I do get sharp pains shooting up my butt and down my legs ocassionally but apartfrom wearing tight pants there is usually only minor irritation/pain and itching. It onlyREALLY hurts right after and during sex. It doesn't matter when > entering, during,exiting, and lying there afterwards. At the very best I'm slightly uncomfortable. Let'sjust say, both my boyfriend and I are nervous whenever we have sex. 4. You mention something about alkaline vagina fluid. I haven't had myself checked YET,but would the acidity or alklinity of my boyfriends semen make a difference? He's alsodiabetic - would his sugar level have any effect? I hope you can respond soon. Thanks, Susanna
CommentMARTINA--you said that the oral anti-fungals helped for a bit, but that the yeast cameback as soon as you stopped the medication. my doctor in Boston has put me on anti-fungalsfor the last 10 months since we both believe that a yeast infection triggered my vv. mydoctor wants the yeast entirely out of the picture so that my body can heal. she thinksthat the yeast is no longer in my body now--but she wants to keep it that way. I seem tobe extremely hypersensitive to yeast. maybe, with your constant yeast infections, yourbody is unable to recover. try and see whether your doctor will put you on them forseveral months. Also, try the NAG from Solomons since it has been helping me. Also, ask your doctorabout anti-depressants for the pain. they've been helping so many women that i've spokenwith personally. Try as many therapies as you can because it takes a combination oftherapies to find something that will work for you. Good Luck!!!
CommentHi all . . . Just reading some of the recent posts and wanted to add some info: Susanna in Canada: I have found that some doctors (thought it probably is not the bestidea for clarity's sake) use the the terms vulvodynia and vestibulitis interchangeably. Inmy case, any sort of friction is uncomfortable, though I do not have pain down my legs.And the diabeties question is interesting. I did have my blood sugar checked initiallybecause diabetics excrete higher levels of sugar in their urine, and that can definatelyencourage yeast. I think it would be worth asking a doctor about your boyfriend'ssituation. Also to everyone talking about antifungals: Please go to the WEBMD site and click onDRUGS AND HERBS. Look up DIFLUCAN and you will see the three classes of relatedantifungals which include the brands NIZORAL and SPORONOX. I thought it was interestingthat LAMISIL was not included in this group of drugs; that is a brand for something calledTERBINAFINE. Interesting that it is not an -AZOLE like most antifungals. Perhaps this issomething to look into . . . I'm going to ask my doctor about what exactly the difference is. I'll let you know whatI find. Christine
Commenthi everyone, I'm sad to read about all these girls that have had vv for over 10years...i've had it for 2 now and can't imagine life for that long dealing with thisproblem....is there any kind of support group that meets in NYC?
CommentI had a vestibulectomy in February and am still in a lot of pain. I"m going backto see my doctor in two weeks and I'm wondering if anyone who has had the surgery had tohave more surgery after the first one. did it help? soem people have mentioned havingprobs with thier bartholins' glands. and have mentioned lichens sclerosis. My glands lookreally swollen and red and it absolutely kills in the two areas surrounding the urethralarea. please let me know if you can help. Thanks!
Commenthi....I just wanted to repeat myself again...only in hopes to help another if Ican...Regarding active release technique...quite a few women have in fact e-mailed me andpursued this treatment...so far some success has been seen. I am not going to go into allof this again...my history is posted throughout these guestbooks starting back in April of2000...for those of you who are really questioning the reality of whether or not this isall bacterial/flora/blahh blahh related...maybe it's nerve/muscle entrapment relatedplease go see a chiro. who is certified to do ART...The website iswww.chiropractic-sports.com/reference/ART.HTML! Look into it...It may help and or evencure you! My posts are in the 11th guestbook (3/28, 29, (4/1 - Mary), 4/13 13th 6/27/0014th Oct. 9th 15th 1/15/01, 1/16, 18, 1/29... Please read if you're interested...and feelfree to e-mail me. Oh, there has been a lot of mention of both Dr. Michlewitz and Dr.Elizabeth Stewart...I know them both. I saw Dr. Michlewitz for years and years with noresults whatsoever...He is very friendly with Dr. Glazer. Well, at least he was back whenI was seeing them both... Dr. Stewart, I see now...she is great...I am continuouslykeeping her posted regarding my success with ART and Dr. Gale (my chiro...) She is amazedand so very interested in this whole aspect...she has referred a couple of women to himbut for whatever reason (I can only unfortunately imagine) they have not approached himyet...Good luck all...my thoughts are with us all. Tammy
CommentTo D. I am from the Boston area. Where can you get the NAG??? I have taken the Twinlabsbrand it in the past with much success but they discontinued it due to lack of sales. Iwas devastated. I almost felt like I was in remission while taking it. I would be happy totry another brand - please tell me what brand and where to get it.
CommentTo anyone: Has anyone tried acupuncture to relieve the pain? I have been consideringthat lately. Also thinking about seeing a chriopractor. Has anyone had success with these?Take care, Linda
CommentFor Linda: I think NAG is readily available. It's true name is N-Acetyl Glucosamine.And while you can get it through Dr Solomons, I think most nutritional stores andpharmacies do carry it, including sports nutrition stores. Just see what the ingredientsare first. Some of the excipients are made from shellfish and I had some sort of reaction,so be cautious. Anyway, I went to Google.com and typed in the full name, and a ton of hitscame up. I am confident you will be able to order it rather easily. Hope this helps,laurel
CommentTO FRECKLES: Hi my name is Christina and I just had surgery in May. I had a compleate vulvarvestibulectomy with vaginal advancement and a perinial skin graft. I had all of my minorvestibulary glands removed as well as my Bartholin's glands. The doctor removed the entiregland and not just part of it or just the top layer of skin. Most of my glands were 4inches long, and the Bartholins glands reached the bone. They had fibromas and scar tissueall over them. If you have any questions about my surgery or would just like to talkplease email me at: christina_bunny@hotmail.com I would be happy to hear from you. As for how far I am in my therapy, I start dialator therapy in a week. I probably wontknow for a couple more months how successful this has been though. Feel free to send me an email. Christina
CommentHi all, I'm back! Sorry I havn't posted in a few days reason being is because I've beenEXTREMELY busy these last couple days trying to find a new job and a new car. I found bothso that's good. I bought a new 2001 civic Honda. It's totally cool! Anyways, just to letyou all know, I'm doing just fine! I'm still working on having faith and having arelationship with god. I havn't really been hurting much at all. Sometimes I'll feelshooting pains in my clitoris but it's not too bad. It just comes and goes. I'm notburning anymore and I stopped using my vanicream 2 days ago. I don't want to use it if Idon't have to. Well guys, it's 12:44am now. I better go to bed now. Take care and I'lltalk to ou all later. Stephanie, Hope you get well soon. I'm glad you and your husband had sex 3 daysstraight with no pain. That's real cool! I havn't had sex in 2 years. But I will againsomeday. It's been 5 months and 1 weeks since the surgery. I'm doing good still. Goodnight all!
CommentLinda--i always buy the NAG through Solomons since i have been unable to find it at anypharmacies. i've asked them to order it and they have never heard of it--even when i spellit out for them. i have run out, and i am waiting for a new order to arrive, but i amgoing crazy without it. ALSO, i have tried acupuncture in the past with no success but ihave decided to try again with a different doctor, and so i am going today to my 3dsession. i will let you all know how it is working.
CommentLaurel: Thanks for the info!! I' ll try your suggestions. I do know the full name ofNAG and tried getting it from drugstore.com and healthshop.com, as well as our local GNCstore and no one had it available. But I will try the other resources you mentioned.Thanks again.
CommentLynn and Christina, curious who you had the surgery wtih. I used Dr. Foster inrochester. Still in a decent amount of pain - its been five months. the areas of scartissue are still really painful. phsyical therapy didn't help me at all, maybe made itworse. i'm going back to see the doc again in 2 weeks. anything you'd recommend asking? hemay do more surgery.
CommentHi D. How do you get to Dr. Solomon's web site to buy the NAG? I've been to his sitebefore but for some reason can't get back in. Linda
Commentlinda-- i had to contact Dr. Solomons personaly either by phone or fax, i cannotremember. maybe try faxing the nva and they could direct it to solomons if his personalfax number is not given. i am pretty sure it is. if not, i can hunt around for it.
CommentDear all, Hi I'm from the UK where our condition is little known and poorly treated. Ibumped into a website on which we can sign our names to be sent to pharmaceuticalcompanies in order to raise awareness of our condition and how many of us there are whohave it. Please take the time to sign, it means research and cures. Thank you, get wellall of you
CommentDear all, EVERYONE MUST DO THIS!!! Hi I'm from the UK where our condition is littleknown and poorly treated. I bumped into a website on which we can sign our names to besent to pharmaceutical companies in order to raise awareness of our condition and how manyof us there are who have it. Please take the time to sign, it means HOPE, RESEARCH andCURES. The web address is www.vulvodyniasupport.com. Click on 'Call To Action'. Thank you,get well all of you
CommentOops! Sorry I wrote that twice, I'm not so good on computers. I just wondered if anyonehas had experiences with their condition being connected to allergies. I've got a strongfood allergy so I am prone to others. Maybe it was the contraceptive injection and thepill? FRANK B: I just wanted to thank you for being such a shining example of a supportivepartner! You have given me hope. I have tried many treatments with no effect. I only havepain at the entrance to the vagina but it's chronic and is ruining my life, I'm onlynineteen and have had it since i was sixteen. I've never enjoyed a full sexualrelationship and feel so useless. I feel insecure sometimes in my relationship with myboyfriend because of my condition. I just want to be normal for us both! He is reallyunderstanding and great support but I'm always scared of losing him and even havenightmares about him sleeping with other women! Good luck with your wife's treatment
CommentTo Jessica: Thanks for the compliment and I'll check out that site soon. You are soyoung to be suffering with this illness if there is any upside to that it may be that withmore awareness and research you will enjoy the future. I have posted before that while Imay be supportive that can sometimes be annoying. I have been pushing my wife to seeanother Gyn and she just thinks it is pointless. I have to say at the moment she may beright. You are not alone in your insecurities, I hope your boyfriend appreciates you formore than a sex partner. I think about my wife in that manner. I still get frustratedbecause I miss the active love life we had but things change that are beyond our control.She did not ask for this problem. I think about how you must feel concerning the sex issuethen think about all the folks who are insecure because of their looks or some otherimagined problem. Hang in there and try not to worry it only hurts you. Best of luck .
CommentI was recently diagnosed with VV about a week ago. It's was nice to know that I wasn'tlosing my mind! I have been to three other doctors whose "diagnoses" ranged fromchlamydia to yeast infection to being "psychologically" damaged. It was also agreat relief to my husband. We recently celebrated our 2 year anniversary, although youcan't really call the sex celebrating! He's been so awesome in standing by me andacknowledging that something really was wrong and that is wasn't all in my head. I juststumbled on this site today and was so encouraged reading all of your comments. It's niceto know that I am not alone!
CommentWasn't there supposed to be an article on Vulvodynia in the August issue of Glamourmagazine? All I saw were some questions and answers to the 2 female Drs. who appeared onOprah. One question was pertaining to pain during sex and the Drs. mentioned thatallergies, vaginitis and vulvodynia could be the cause and they said that many of theseare easily treated. YEAH RIGHT!! It was about as helpful as the episode of Sex and theCity!!!!!!!!!!!!!!!!!!!! I'm sorry I wasted my money on the magazine!!!!!!!!!!!
CommentRe: the Glamour "article" (all two lines of it....) I'm so disappointed that more of these young female magazines don't feature afull-length article about vulvodynia. It's sooo sad to read many of the entries here, suchyoung, formerly vibrant and perfectly healthy women struck with such a mis-diagnosed andpainful affliction (not to mention the strain on relationships...Geez!) I hope for betterdays for all of us. Sandee (symptoms began 11 days after beginning a strong course of Keflex (anantibiotic) for a minor bladder infection (thought I'd take care of it in the earlystages, didn't have a culture of my urine taken, oh, how i wish I could turn back time andknew then what I know now!!!)
CommentHi all, well I would really like your opinions. I have yet to be diagnosed withanything but in the meantime I am going crazy with these symptoms. It began on June 29 oflast month. After sex I felt a burning sensation up inside of me. It wasn't that bad so Icompletely blew it off and didn't worry about it. Then the next time I had sex, I felt theburn sensation again. I thought for sure this was like a UTI, yet I had no other symtomsyet. About 4 days after feeling the burning sensation, I began to get horrible menstrualcramps, and low back pain that extended down into my buttock area. All the time I stillfelt the vaginal burn up inside me. I went to the gynecologist and they did a pelvic examon me including taking some cultures for lab tests. I was also put down to have a vaginalultrasound. Monday came and I had the ultrasound, I guess they were looking for ovariancysts because of the cramping feeling. No cysts were found. That night I laid in bed andalmost cried because the burning sensation was so uncomfortable and my back hurt and thecramps kept on. Finally the cramping went away after about 3 days, then the back painslowly went away. I began to feel an ache in my vagina. I kept explaining to my very goodfriend that it felt like someone was either stabbing me with needles in my cervix or I hada catheter or something up inside me. After a couple more days the lab results came back, no infections, no bacteria, no UTI,no STD's (chlymydia, gonnorhea, etc) normal ultrasound, yet I still have this vaginalburn. It's driving me crazy!! I do take Zoloft, and have been on it since January, a 25 mgdose daily. I also have Herpes, but it's a mild case and I have only ever had one lesionthat was annoying but went away and never came back again, at least it hasn't come back in2 and half years. I vaguely remember having vaginal pain on the first and second days of my period. LIkewhen you have a tampon up there, I can just feel my vagina aching. It's this likevulvodynia? No one has mentioned this to me, but I was surfing around trying to figure outwhat is wrong with me and came to this forum. Please email further if you have similarexperiences. I would truly appreciate this. MikaelaM@prodigy.net
CommentHi all, well I would really like your opinions. I have yet to be diagnosed withanything but in the meantime I am going crazy with these symptoms. It began on June 29 oflast month. After sex I felt a burning sensation up inside of me. It wasn't that bad so Icompletely blew it off and didn't worry about it. Then the next time I had sex, I felt theburn sensation again. I thought for sure this was like a UTI, yet I had no other symtomsyet. About 4 days after feeling the burning sensation, I began to get horrible menstrualcramps, and low back pain that extended down into my buttock area. All the time I stillfelt the vaginal burn up inside me. I went to the gynecologist and they did a pelvic examon me including taking some cultures for lab tests. I was also put down to have a vaginalultrasound. Monday came and I had the ultrasound, I guess they were looking for ovariancysts because of the cramping feeling. No cysts were found. That night I laid in bed andalmost cried because the burning sensation was so uncomfortable and my back hurt and thecramps kept on. Finally the cramping went away after about 3 days, then the back painslowly went away. I began to feel an ache in my vagina. I kept explaining to my very goodfriend that it felt like someone was either stabbing me with needles in my cervix or I hada catheter or something up inside me. After a couple more days the lab results came back, no infections, no bacteria, no UTI,no STD's (chlymydia, gonnorhea, etc) normal ultrasound, yet I still have this vaginalburn. It's driving me crazy!! I do take Zoloft, and have been on it since January, a 25 mgdose daily. I also have Herpes, but it's a mild case and I have only ever had one lesionthat was annoying but went away and never came back again, at least it hasn't come back in2 and half years. I vaguely remember having vaginal pain on the first and second days of my period. LIkewhen you have a tampon up there, I can just feel my vagina aching. It's this likevulvodynia? No one has mentioned this to me, but I was surfing around trying to figure outwhat is wrong with me and came to this forum. Please email further if you have similarexperiences. I would truly appreciate this. MikaelaM@prodigy.net
CommentI'm beginning to see publicity for an upcoming book written by Susanna Kaysen andcoming out in a 150,000 print run from Knopf. It's a memoir and according to the NYTimesdeals with her "quest for relief from vaginal pain." 150,000 is a big print runso I'm hopeful the book will really raise awareness.
CommentHi everyone, I just wanted to write to let everyone know that the first meeting for the MN VulvarSupport Group was a success. As of right now we have 5 members in the group and I amhoping to see more. For those who live in MN in the twin citys area, we meet once a month on the secondthursday of the month at 7:00 pm. The next meeting is August 9th. Our support group is for the mutual support and exchange of information for womensuffering from vulvar disorders such as: vulvodynia, vulvar vestibulitis, lichen sclerosisand other vulvar skin disorders, and chronic vaginitis and vaginosis. If you would like to learn more about our little group feel free to email me at: christina_bunny@hotmail.com
CommentSusanna Kaysen is a faculty member of Boston University and I saw her give a readingfrom her new book last November. I was sitting in the audience and I was astounded to hearwhat she read since i had no previous idea that it was about vulvar pain. She describedevery pain and burning sensation that I had at the moment, and I felt as If i were livingin a dream! I wanted to speak with her afterwards because I was convinced that she had vvbut too many people were crowding around her. I am delighted to hear that the book iscoming out. I will try to e mail her to see whether she could help fight our cause. i willlet you know. thanks for the tip about her book release.
CommentTo Jessica Davidson: I too have nightmares about my husband sleeping with other women, even though he hasbeen the most supportive husband I could ever want throught all this. I know this has tobe hard on him. I just had a vulvar vestibulectomy in May in hopes that sex will be easyerafterwards. The dreams can color my mood for the entire day. Just want to comment about the Glamour magazine artical. A friend of mine in my MNsupport group was interviewed for the artical and I know she is dissapointed and let downthat the artical mentioned almost nothing about vulvodynia at all, and nothing at allabout the information she provided at the interview. I think that for once one of theasemagazines could do with one less artical about how to drive him wild, and put somethinginformitive in there for a change. Christina
CommentHave read with interest how Diflucan and Nystatin have not helped, but Nizoral has. Ibelieve I took Nizoral for 1 week 10 years ago when this all began and when I stopped, Ithought my symptoms worsened. I am going to talk to my D.O. tonight about this. Also, Drs.Toth and Peacocke were mentioned. I know Peacocke is in NYC and was considering going toher. Is Toth in NYC also? Are they worth going to see? I have no GYN now as most of themare idiots when VV is mentioned. I know my problem started as a yeast infection and thatis why I always seem to come back to that, I could be wrong, but I feel it is some sort ofyeast/bacteria/toxin that has overgrown due to heavy antibiotics and taken up residence inthose mucus membrance tissues that line the large intestine after being chased out of thevaginal tract by all those chemical compounded vaginal creams. Any info on Toth arePeacocke would be greatly appreciated. And thanks for the info on Nizoral - even if ithelped a little. Also as far as movie stars/celebrities having this disease - they wouldNEVER owe up to it. Their status is determined by their sex appeal to the public. Of allpeople, I would think Elizabeth Taylor would have problems after all those $$ quacks haveput her through, operations, pills, booze, etc...but she keeps chugging along lookinggorgeous. I myself am disgusted by the $$ those people make, always awarding themselvesand being treated like royalty. However, I'd never wish V on anybody. Well I'll get off mysoap box now.
CommentHi all, Just wondering - is there a support group that meets in NYC, or does anyoneknow of a good therapist who deals with chronic pain issues in NYC?
CommentHi all, Just wondering - is there a support group that meets in NYC, or does anyoneknow of a good therapist who deals with chronic pain issues in NYC?
CommentButtercup, I have had vulvar problems since I can remember, but nothing as bad as thebout since 1992. I am on my fourth week of Nizoral and can't say enpough good things aboutit. I am 90% at the present time, maybe even slightly better. And I had all but given uphope of getting to this mark. Each day improves. If you don't see results right away forthose willing to give it a go, it may take months, so don't let that discourage you. Tookme 2 1/2 weeks to really see a difference. On the days I incorporate too much sugary/floury/ yeasty foods, I do notice some burning but it has been tolerable. And goes awayrather quickly.That is from never being able to even have them at all. Rotating dietshelp. Having the same foods every 3-5 days helps. I have an appointment with a v.v.specialist next week. I am going to see if she will continue me on the medicine for alittle longer. Or maintence dosage, as some report a recurrence of symptoms. And mine isdefinitely due to antibiotics. I think it is worth you mentioning. Best wishes, Laurel
CommentTo anyone that thought my earlier entry about diabetes was interesting: I had thediabetes blood testing done at my doc's request since he says that my vestibulitis can bea sign. Today I got the results, and sure enough, my doctor was right to have me tested.My glucose levels were off the chart, basically. Now, I am going on an insulin stabilizercalled glucophage. Appartently, my body's insulin resistance has set off a dominoe effectthat has led to the vulvar vestibulitis, among other problems. It also explains the 35pounds I have gained in one year. I'd would like to point out that I am only 22 andneither of my parents or grandparents are diabetic. However, my doctor says this isgenetic. I now have to watch out for PCOS (Polycystic Ovary Syndrome.) It is the leadingcause of female infertility, one out of ten women have it. It is not safe for me to getpregnant until this gets worked out. Anyone who has had weird out - of - the -blue weightgain along with the vulvar pain, maybe run this past your doctor.
CommentTo anyone that thought my earlier entry about diabetes was interesting: I had thediabetes blood testing done at my doc's request since he says that my vestibulitis can bea sign. Today I got the results, and sure enough, my doctor was right to have me tested.My glucose levels were off the chart, basically. Now, I am going on an insulin stabilizercalled glucophage. Appartently, my body's insulin resistance has set off a dominoe effectthat has led to the vulvar vestibulitis, among other problems. It also explains the 35pounds I have gained in one year. I'd would like to point out that I am only 22 andneither of my parents or grandparents are diabetic. However, my doctor says this isgenetic. I now have to watch out for PCOS (Polycystic Ovary Syndrome.) It is the leadingcause of female infertility, one out of ten women have it. It is not safe for me to getpregnant until this gets worked out. Anyone who has had weird out - of - the -blue weightgain along with the vulvar pain, maybe run this past your doctor.
CommentSara-- I am so sad that you have to now battle against diabetes, as if vv wasn'tenough. many people sufferred from diabetes in my extended family, but, although i takeyearly exams, i do not have it. at least you are young (i am 22 as well) and your bodywill now function so much better since you know how to treat it or manage it. i am reallyhoping it will all work out for you. keep us in touch with your condition! good luck!
Commentdoes any of you have smelling discharge? it's alittle bit fishy and white. it's itchingafter taking the antibiotics for UTI and do you think i have bacterial vaginosis orvulvodynia? i had infection around my episiotomy area after giving birth..so i hadsurgery..they scratched all thecell down there and resotore the episiotomy 3 monthslater..while that happened, it was itching and irritating..Doc said it's a healing processbut after recovering, this spring, i had the itching condition again. I put the estrogencream and came back to normal. now, i had UTI and after taking antibiotics, my down thereagain got itching. i went to see a doc today and they said i have either yeast or bacteriafrom wet mount. what does it mean? from wet mount, cant they tell exactly what i have?anyway, they gave me Tri Gel to cure Bacterial vaginosis. i am afraid to put on this sinceit might worsen my condition. what should i do? help me guys..
CommentTo the last entry; I checked out the Women's Health page at Medscape.com. The articlewhich mentioned "Wet Mount" was about bacterial vaginosis. That is infections byeither yeast or some bacteria causing an odorous discharge. The article was kind ofinvolved and mentioned the chemical causing the odor. The site I just listed is a goodone. Make a list of questions before you visit your Gyn and ask them, you are paying for aservice don't be shy. Best of luck.
Commenti have one question. when you guys had burning and itching sensation af first withoutknowing the existence of vulvodynia , and when you were diagnoised as yeast infecion orbacterial vaginosis, did you get the result from wet mount? i found out from the guestbook that many women were mistreated at first and it made them feel worse. so did the wetmount show that you had REALLY yeast infection or bacterial vaginosis? or they justtreated you with symptoms?
CommentNote of interest: Susanna Kaysen - is it the same Kaysen that wrote the book "Girl,interrupted" about her mental illness that later came out as a film starring WinonaRyder? I guess she's been exposed to some heavy medication in her day so it's notsurprising if she came down with vulvodynia.
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