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CommentWelcome all vulvodynia.com visitors to the 19th guestbook. Thanks for your continued interest and participation. Please keep in mind the email broadcast lists and the chat room for direct communication and sharing of information.
CommentI must have the most years of experience with vulvodynia as anyone who has written in these journals...for my seiges began 20 years ago at the age of 35! I was diagnosed with interstitial cystitis and treated with painful DMSO treatments and stretching of the urethra by a urologist. From there it has been downhill all the way. My symptoms are the same...(as I write this I am sitting on a pillow on my computer chair because of pressure and I have just tossed aside the ice bag I was using to relieve pain.) My treatment by at least 10-15 GP's and gynecologists has been the same...total disbelief and denial that I could really be suffering with such symptoms. I have always walked away from these office visits with great anger and frustration. Now, as I find myself with a year's leave of absence from teaching and the time to do so, would like to offer my services as a professional writer and endeavor to write a book for all women who suffer with this condition. To hold out for a cure is our ONLY hope, but until we make our voices heard, we will continue to be plagued by inadequate knowledge and resources and physicians who are groping in the dark to find a cure for what is indeed the "plague" of the century for us as women. For months the idea to write a book (I have authored four adult books and 1 children's book--and I have a master's in counseling) has haunted me, but after reading the latest entries of this month, I feel committed, if I am needed, to conduct research and work with knowledgeable professionals AND those who are suffering to present a viable and intelligent case to the American Medical Association and medical researchers and plead with urgency for instant answers. I would be proud to stand tall and speak for all women who suffer in silence...whose marriages have fallen...whose lives have come unglued like Humpty Dumpty...and who have borne this burden with dignity. We cannot wait any longer...this life is not a dress rehearsal, and we need to live it to the fullest and enjoy the gift of each and every day. Surely somewhere there is some combination of practices and medicines that can wipe out this curse. Those in control of this web site and Dr. Glazer, please feel free to contact me at the above address. Anyone else who would like to have some input into this idea, let me know. We are sisters; we are joined in our pain and suffering and I feel so close to each and every one of you. One candle can start the flame that could make a difference in the cure for vulvodynia. God bless you, my new friends. Gayle
CommentGayle: The email you provide in the above posting to the guesbook comes back as undeliverable. Just wanted you to know that I have a book due out in the stores and on amazon.com this August. You can see info about the book by going to the homepage at www.vulvodynia.com and click on the icon on the right side of the page which takes you to amazon.com's page on the book. I would be happy to speak with you directly or by email if you would like to contact me. Howard Glazer Ph.D.
CommentCould anyone tell me what Active Release Therapy is? Do you go to a therapist for it or do you do it yourself? What kind of things are you supposed to do in this treatment?
CommentDid anyones pain "start" from having intercourse? Not from an infection that made it hurt to have intercourse, but that their pain started from intercourse? Maybe with a new partner but did not get any STD's?
CommentI apologize for the fact that my letter got repeated so many times. Is there any way to remove all but one?!!!!!!! My email address is operable now. Sorry for the inconvenience. I look forward to hearing from some of you.
CommentHi, I used to be on the VPD (vulva pain disorders) list, but lost the address for it. Can anyone tell me how to locate the list again? I miss the support from the members...any help would be appreciated. Thanks! Linda
CommentGayle, happy to see you are so inspired to be a voice for everyone. I too have often thought about writing, but it sounds like you have the time the connections (a publisher), and the determination to do it. A little suggestion...you might donate a small amount of the revenue to vulvodynia research, even if it just $1.00 a book. Jennifer
CommentHi! I'm 18 and I have had reaccuring UTI's since I was 14.. I've had about 24 or so. My former docter would actually culture my urine overnight before contacting me, but this one does it in about an hour.. which I don't really like... Anyway, she won't refer me to a urologist because my UTI's aren't 'reacurring', which she believes only happens when they don't clear up completely between times. I think if she had only a few weeks between occurances, she would think they were reaccuring. However, this is not what I wanted to talk about, just wanted to share a little background to perhaps help the next story. Okay, well soon after moving out with my boyfriend I began having sex a lot more often and got two yeast infections in a row. We decided we weren't being clean enough (he's not circumsized) so we fixed that up. Then about four months ago I had this really STRANGE occurance. I was in a lot of pain, like I had a yeast infetion. Sex was unbearable, but like always, I went straight to my doc. She did a culture on me and said I did not have a yeast infection, but I looked bright red, almost scalded inside. And any kind of touch down there was unbearable. They then prescribed me something and it wasn't right, so they prescribed me something else.. anyway, that's beside the point. I never did find out what was wrong with me, though it did clear up and hasn't reaccured. Are there any ideas? Could it have to do with my succeptibility to bladder infections? Also, with my bladder infections, I'm up to 1000 mgs of antibiotics a day to kill them off.. its tearing up my stomach! Isn't there any other way besides upping or doubling the dossage or prescription. I seem to only respond to the same dosage and prescription once and then it must be raised...
CommentI am trying to get an appointment with A dr. William Ledger in NY. It is very difficult to get an appointment with him. His earliest appointment is August. Does anyone know anything about him and his treatment.
CommentSM - My pain started with intercourse - never had an infection, etc. Mine actually started after being married for 5 years. Haven't found a treatment that has worked yet - but I'm still trying.
CommentM Good luck with the interferon shots. I also had the shots few years ago and completely understand how you feel for the next few hours. It's certainly not pleasant, but the side effects seemed to lessen a bit after the first couple of shots - so hang in there!
CommentJoy - Can you please give us the details on your interferon shots? How long ago? Who did them for you? Where did you (physically) get the shots? And, how are you now? (I take it that you are not recovered . . .) Thanks!
CommentLaura, did the UTI's start when you became sexually active (even if it is just oral sex)? Were the original UTI's just painful in the urethra, or all the way back in the bladder? Let me know if this does not make sense to you. I think it is important that they culture you, and not just do a quick test AND that an antibiotic works the first time and then needs to be upped the second time, makes me think that you actually should try a different antibiotic and you should probably assume whatever it is, is being passed between your boyfriend and you. And I think it is all related. Just my opinion, I am not a doctor. Jennifer
CommentMy symptoms started shortly after marriage over 20 yrs. ago. Thankfully, I haven't been suffering for awhile now.
CommentI have noticed improvement in my symptoms by using wet cotton wool pads instead of toilet paper and drying thoroughly (with hairdryer if possible on cool setting) after bath and urinating - obviously only able to do this at home. I have suffered for 20 years and feel my vulvodynia is to do with eczema and moisture (tap water or urine) being trapped in 'crevices' of vagina and causing skin irritation. My symptoms have improved significantly though not disappeared. Has anyone else had any success with above?
CommentI was diagnosed with vulvar vestibulitis about 9 months ago and it has been a terrible ordeal. I had about a year of unpainful intercourse and then, one night everything changed. It began with a sort of discomfort that turned into the most unbelievable pain I had ever experienced. I just got married two months ago and sex has been almost out of the question. I feel so terrible for my new husband...like I have done something wrong and am cheating him out of the typical life of a newlywed. If anyone can recommend a doctor in the San Antonio area, I would really appreciate it. Also, any suggestions....I don't want to have surgery this early in my life...I am only 23 and don't want to risk future problems. I use Xylocane right now and it provides some temporary relief during intercourse, but not for long. This site has been very helpful. Thanks.
CommentHi, I have suffered with vulvar vestibulitis for about 7 years now. Sexual intercourse is painful and sometimes just sitting is painful as well. I finally found a gynecologist who new something about this disorder. After use of steriod cream (relief was only for about a month) she finally opted to do surgery. I just had a vestibulectomy last Friday. Has anyone out there had this done? Was it successful. What was your recovery time? It has now been 6 days since my surgery and it is still painful to sit. I would value any input and encouragement. Thank you.
CommentHi everyone, I feel I am just beginning to develop the sort of symptoms many of you have been suffering from for years. I am trying to piece together the events - because they are still very close. Maybe I can find a connection. About a week ago I started to feel this burning, mostly in the vulvar area, but internally also. It's been with me on and off. I went to see a doctor 4 days later - they did not find bacteria in the urine, and took a vaginal culture. I have no discharge, if anything, much less than usual. I have taken to sleeping without underwear and daytime also, as much as I can. I am afraid I am just going down the same road as many of you. I am trying to catch it before it develops - not sure how. The only things I can relate it to is a gynecological exam 3 weeks ago, badly rinsed laundy a day or two before, and tight pants. It was a very stressful day, when this started. I also just had a slighly abnormal PAP test and I am going for colposcopy. Can there be a connection? I also had trouble for the last two years with the anus area skin, always raw, itchy and broken. Maybe it's the same thing. I am suspicious of the toilet paper now. Any comments appreciated. Thanks.
CommentHi - I had vulvodynia about 9 years ago and I'm here to say that there is relief out there. Back in 1994, vulvodynia wasn't very well known and the internet was still young, so I suffered silently having to take 6 months off of work because of the pain. I spent my days in bed with an ice pack between my knees. Eventually I came upon Dr. Foster at Johns Hopkins University Medical Center and he gave me desipramine. It took several months but finally relief came slowly and finally went away altogether after over a year. However, over the years I still have reoccurent bouts of "nerve tingling" in the vulva area, particularly around my urethra making me feel like I have to empty my bladder. It is the most annoying thing i the world. Eventually it goes away, but I was wondering if anyone else out there is experiencing anything like that. Best wishes to everyone experiencing vulvodynia.
CommentJeanne, I'm glad that your symptoms have cleared up so much. What kind of medication was the prescription that you took? Did you feel any relief early on or was it all after a year? Did you have problems sitting. This is my biggest culprit. It excruciating and I have a desk job. It's pure hell. Anyway, in regards to the feeling around your urethra. I don't know how to describe it but it's like a "puckered" feeling I get there. I don't have to go and it doesn't feel like an infection, it's an irritating feeling. Sometimes it feels like I'm building up to have to go or like I have a few drops left. It's just a really strange feeling that is very hard to describe. I get really upset when I get the feeling because I don't want there to be multiple things wrong.
CommentM - I got the shots at the recommendation of Dr. Benson Horowitz in CT in 1998. I live in MA and didn't want to travel to CT each week, so by gyn agreed to do it. It is a series of shots into the vulva. I would basically sit on an ice pak for about 15 minutes to try and numb the area and then she would give me the shot. Each week was a different side of the irritated area so it would have time to heal. The shot was the easy part - the side effects were that you basically felt like you had the flu for the second half of the day (fever, aches, etc. ) but subsided by bedtime. It wasn't that bad that it kept me out of work. Unfortunately for me it did not work, but Dr. Horowitz has had patients that reacted very positively to the treatment. So the search continues - but I certainly will never give up hope!
CommentIs anyone else from San Diego? I think it would be nice to start a support group.
CommentI have a question. Do most people's problems with vulvodynia come on fairly suddenly? I had an episode with pain in my buttocks and some in the vulva in October. Then it went away. In mid-December, I had a reoccurence of the pain int he buttocks and then a sudden onset of vulvar pain. I reacted strongly, assuming I had herpes or something of the such. I had a slight temperature, heavy discharge and my vulva was red and raw. The doctor put me on an anti-viral medication for herpes and I was left to deal with it. I've stayed on the medication, but the pain continued. In the meantime, no tests were coming up positive for herpes...blood tests, culture test etc...Anyway, my main question is how sudden was the onset of your symptoms? I'm quite stumped and scared and now they have me on neurontin which doesn't seem to do anything but make me gain weight.
CommentSue, I live around San Diego. Maybe we could meet sometime. Or atleast email buddies! my email is julkiemama77@msn.com Julie
CommentI just would like to say that yes my pain started suddenly and got worse when I was pregnant. Now that I delivered I still have symptoms but not as horrible. I was tested for everything under the sun and everything showed negative but I still believe my vulvodynia is due to some kind of infection. Just my gut feeling. What's your feeling about it?
CommentI just found out that I won't be able to use Estrace cream during pregnancy because estrogens are known to cause birth defects. I am so disappointed! I'm not pregnant yet, but we're actively trying, and I guess that means I should stop the Estrace now so that there won't be any chance of hurting the baby. I have only been using it for the past month and have already had amazing results. Of course I don't want to do anything to endanger my child, but I'm so frustrated that just when I start to get relief from vv, I have to give up the only treatment that has worked.
CommentHas anyone elses pain been associated with bacteria??? I am now a pateint with Dr. Stewarts rnp. She did some cultures and found some bacterias. For 2 weeks i have been taking antibiotics and am feeling so much better, but it still hurts to touch. I guess since i have been in pain for 5-6 months i cant expect to have 100% relief in 2 weeks.
CommentIs it possible to have yeast on the inner vulva area and not inside the vagina? I have a thick white discharge on the upper vulva area and am burning and slightly itching. The rest of the vulva is red with some pain.
CommentSomeone please help me where do I go from here?? My Lady has sufferred from Vulvadynia since 1996, she only suffers pain during intercourse and irritation from tampoons. How we have managed to stay together defies logic. Just like many of the cases I've read here it started after a bad case of thrush. She saw 3 gynos whose diagnosis ranged vaginismus to the irritating "it's in your head see a shrink". The pain started and our sex life deteriorated and after 3 years of pretending it would just get better by itself I happened upon a segment on TV that described exactly what she was sufferring. We happened upon this site were reffered to a therapist who used bio-feedback after 12 months with no improvement we finally found a Gyno who knew about vulvadyina. She has had 2 treatments using a flash pump that has also been unsuccessful. We are now at a crossroads..as I am sure many partners of suffers of vulvadynia will know the continual and protracted rejection of any phsyical advances destroys the spark that led to the relationship. My partner has zero libido as sex equals pain. She says no sex is not a problem as she has no libido thus no need to continue to try to find a resolution to the pain. The Dr has recommended removal of the Bartholin glands and some of the affected tissue he is confident of a successful outcome. However my partner is fairly adamant that she will not undergo any intrusive surgery. I do not wish to be a monk for the rest of my days, I have been 100% faithful and comitted I love her but the abscence of intimacy is sometimes too much to bare. I work away 6weeks on and off and to come home to rejection is destroying our relationship. I have always been the one who has sought to find a cure to her pain so we can once again enjoy each other but I no longer have the enegry to continue. She now says what if the pain and loss of libido is just because of me. I was really choked when she said this, I know that the pain has an undefined organic origin and I understand that she could not possibly want to engage in sex while it causes pain but what am I to do now? So if anyone sufferer or partner has ANY advice please speak up.
CommentPaul, you have articulated basically what I have always feared. I think your feelings are very justified. Many women, including myself continue to have sex, even though it is painful, and we have lost our libido, because we believe most men will simply hate their life without it. In a way I want to thank you for your honesty, because now I know it is not just in my head...my fears...and we vulvodynia patients hate being told things are just in our head. However, I will say that you might be coming accross as unsupportive to your partner, which will lead her to feeling LESS sexual towards you. You have to stop feeling rejected, and realize she has a physical problem. Put yourself in her place. What if your penis hurt all of the time, and when it was touched it was like someone was pushing pins into it? Would you want her to stand by you? Not sure how old you are, but over time you will learn that life is not easy. You think other men are just screwing their partners all of the time, and their lives are perfect. Well, maybe some of them are having sex all of the time, but not everyone is. Maybe they just got let go from their job, and are about to lose their house, or maybe (God forbid) their marriage is great, but their child just got diagnosed with Cystic Fibrosis. Maybe this is why the line "for better or for worse" is part of the marriage vows...not so you are stuck, but so people think about the fact that there might be bad times (not sure if you are married). Why don't you see a therapist who understands living with people with chronic illness? Why does your email have 69 in it?
CommentThis is my first posting and i just want to thank all of you for spending time and posting what you have tried, who you have seen, etc etc. You cannot underestimate how powerful your words of advice and personal experiencex with this disease are! so thank you! My vulvodynia came about in a wierd way. It all started jan 2000 with a uti that never went away. it then developed into interstitial cystitis, which was absolutely horrific. i thought i was doomed as IC is as "uncurable" as vulvodynia. i was lucky to, through the internet of course!!, stumble across an acupuncturist in the los angeles area that specializes in IC and through treatment with her, have been able to cure myself of the IC! i had severe yeast and bacterial problems and it took 2 years to detox. but i can finally say i feel like a normal human being again! the bad part, about 10 months into the IC nightmare, i started having vaginal symptoms; mostly swelling. at that time i was pretty sure it was yeast related becuase it went away for a few days and i ate some sugary stuff and bam, it was back. however, as the months progressed, the swelling got worse and i started to have "nerve" problems of tingling and extreme sensitivity in the vagina. i dont seem to have the "typical" vulvodynia symptoms of burning and skin irritation. mine feels like a more internal/deep issue. i dont know if this should make me feel good or bad!! anyway, while my acupuncturist still thinks she can help, i feel we have hit a brick wall. that is what got me looking for help again via the internet and i stumbled across these guest books. i am going to make an appointment with dr. gordon davis as it seems like he may be one of the experts out there that is actually helping people. the way i see it, i had IC which was "uncurable" and i cured it so eventhough i now have the "uncurable" vulvodynia, i will get through this as well and get my life back! one piece of advice i do have though is for everyone to be extemely careful about the use of antibiotics and antifungals. since they are synthetic substances, their chemical structures are not as complex as natural occuring herbs and supplements and yeasts and bacteria have an easier time becoming resistant to them than they do to more natural and complex herbal substances. i think what got me into this whole mess was a string of one antibiotic after another for 2 months to clear up the uti that never left! i too understand though that we got to do what we got to do, but my advice is to make absolute certain that using the antibiotic or antifungal would have a good chance of success due to tests results, etc. i was able to successfully rid myself of systemic yeast (and therefore getting rid of the IC) with my acupuncturist by using all natural yeast killers. just trying to be helpful, not preachy! i will try and post as my appointments progress so any info and progress i make, i can share and hopefully help others on this list like you have all helped me! take care and hopefully i will be posting soon with some good news! Julie
CommentTo All: Please be wary of the sales people on this site. They push so called cures like" Colloidal Silver". No one knows what causes Vulvodynia and while some may get relief from any number of treatments don't fall prey to scams. The doctors are still treating an illness with no known cause or cure. Imagine the desperation to justify surgical removal of vestibular glands, that's like removing a patient's foot because you cannot find the cause of the foot pain!!
CommentMy email has 69 in it cause that's the year I was born and micko was already taken, though I did declare 1998 the year of the head job. As for being seen as "unsupportive" I completely understand that if sex caused me pain then I too would not be interested in it. We have not continued to have sex for this very reason and have not had any intercourse since 1999. This I can cope with but for the last 12 months there has been just about zero sexual contact of any sort. We are not married. If it was me who suffered impotence that was caused by a something that I could endeavour to "cure" then I would put 110% effort into it. When my partner knows that she can do something but choses to procrastinate or ignore her problem then who is the commited one? I have and will stand by her but it has to go both ways. Like all life's tribulations and you'll have to excuse the pun you can take it lying down or put up a good fight, you can not expect to find cure's by ignoring the problem. Whether other men are getting laid is irrelevant to me I love this lady and want to share all of my life with her and that includes my sexuality. V V has robbed us BOTH of quite a few years of sex and at the same time has allowed us to grow and work out stuff that we may not have confronted otherwise. Now though we have to work on ridding her of this pain and try to recapture the magic part that we did have and I pray, will again. Once again any advice on where to go next? Some seem to think surgery is a good direction yet others seem more than wary? If the pain is very localised and only caused by intercourse or tampoons then would not the surgery be the next step?
CommentJust a reminder that the guestbook is for those new to the vulvodynia.com website to leave comments on the site. The guestbooks are not meant as a mechanism for exchange. If you wish to connect with others then please use the mailing lists at http://www.vulvodynia.com/mail.htm or the vulvodynia chatroom at: http://www.vulvodynia.com/chat.htm Thanks for your cooperation. Howard Glazer Ph.D. Vulvodynia.com owner
CommentI've seen several posts where people are using a cream called Estrace for treatment of vulvar vestibulitis, and I saw it listed as a treatment option by the AAFP. That wasn't even mentioned by my doctor who specializes in this disease - I'm going to a university research center for crying out loud. I also did not see tricyclic antidepressents listed as a treatment option for vestibulitis, but for other forms of vulvodynia. Has anyone else had sucess with the tricyclics for this specific form? This is so frustrating. When I started seeing the doctor I was hoping that I would be quite a bit better by my wedding and now here it is 4 weeks from the wedding and I'm only about 20% better after a year of treatment. No matter how great my fiancee is being about my situation that I am still getting more and more frustrated and doubtful that I'll ever get better.
CommentPaul, I just want to tell you that I think you have been wonderfully supportive w/ your girlfriend. I have had VV for almost 2 years, and I know the effects it has on my boyfriend, even though we are completely in love. I think you are very brave to post on this site, and I think your girlfriend is extremely lucky to have you. I am struggling w/ a low libido as well, although I am not sure whether it is a result of my medication or the stress this condition causes. I have posted in the past few web sites always as "D." Like I have said before, I had one of the worst cases I have ever encountered, and I am now feeling SO MUCH better. If I can get better, everyone can! However, I have been very very aggressive in treating this condition, and I have found the following to help a great deal: active-release therapy, bio-feedback (w/ Dr. Glazer), Desipramine, Celexa, massage, boric acid capsules, and using dilators to slowly stretch the area.I tried many many meds before I found some that worked--so don't give up if the first or second one doesn't work. My advice to you is to have your girlfriend come visit some experts in the US (or are you already from the states?). We could all suggest different specialists across the states. Make sure your girlfriend tries some tricyclate anti-deppressants and some SSRIs for the nerve pain (an expert knows which ones to prescribe). Also, she should rule out any infection or virus. These steps should be done before surgery. I would also suggest you join the National Vulvodynia Association (NVA.COM), because you can buy all the back newsletters which contain interviews w/ different vv. specialists. I got almost all my info from those newsletters. I hope this helps. I can completely understand your girlfriend's desire to just ignore this and hope that it will disappear. But please try to convince her that by being very active in her own recovery, she can really speed up the process! Vulvodynia makes every relationship so difficult, but you can really move beyond this tough period.Again, don't be too hard on yourself. This must be very very hard for you as well.
CommentTo Paul: I'll give you my thoughts hope you don't get offended. I've been married almost twenty years and up until two years ago I was still having sex with my wife between one and three times a day. I'm not bragging, not joking, not complaining that was my reality and that part of our life was great. We have two daughters and lost a third daughter to a genetic disease. Then my wife started getting a recurrent tear upon intercourse. We have sex once every couple of days now and we take it very gently. We also have oral sex and do other things sexually together. Life sometimes stinks for those who suffer from illness and those close to them. Make up your mind one way or the other. If you feel your love will not get some kind of help and will not be sexual in other ways you can either remain in the relationship and keep feeling neglected and frustrated or move on with your life. There is a chance that she wants you to move on, this would relieve the pressure of either getting treatment or having some other form of sex. Life goes on one way or the other. Do what feels right. Do you want to be a lover ,a father? Talk to this lady and be honest. Stop being a martyr, stop being unhappy you have not made a commitment yet. I love my wife and if the frequency of our love making was less I would deal with it, if it was non existent I really don't know what would happen. I do not wish to offend any Ladies here, just being honest...........
CommentHi there everyone. I have been reading this guest book for a while, now, just silently "taking everything in". I have a very similar story to everyone, it is amazing. I was diagnosed with IC approx. 2 years ago. Through various treatments, and a restricted diet, I thought I was actually beginning to tolerate it and manage it. However, just as I was feeling better, I had what I thought was a yeast infection, then a vaginal infection, etc. etc.! I was on terazol, monistat, antibiotics, cleocin, cipro....diflucan. you name it! then, finally, I was diagnosed with VVS about 2 months ago. I plan to start taking estrace and a steroid cream, to see if that works. But like others out there, i have a wedding coming up in 8 weeks, and this has been very difficult on both my fiance and myself. He was very supportive through the whole IC ordeal, and is trying to get through this...but the lack of sex is very trying. Lots of nights spent crying, and feeling guilty, inadequate. I just hope it passes soon! Does anyone know what the estrace is supposed to do for VVS and why it works? Thanks for listening and writing, and keep positive!
CommentJulie, What's your acupuncturists name? I live in LA too and would like to check her out? Does she work with diet too? Thanks
CommentJulie, What's your acupuncturists name? I live in LA too and would like to check her out? Does she work with diet too? Thanks
CommentKaren, the estrace cream toughens and increases bloodflow to (vascularizes) the vulvar skin. According to some research, the estrogen is not absorbed into the bloodstream; it simply works in and around the surface of the skin. In short time (only a few weeks for me), the irritation down there will hopefully fade to just a bad memory. Good luck!
CommentThis is my first entry on this web-site. I have had vestibulitis for four years now. I have also been to many Dr.'s and have found for me Neurontin,Prozac, and an ice bottle have helped.I would like to respond to Gayle's comments about writing a book I think the words she used PLAGUE OF THE CENTURYshould be the title.Gayle you certainly seem qualified to write about and represent all women with this awful disorder. What is the next step? How can we bann together to get research and answers for ourselves and all the women in the future that are going to be diagnosed with this painful disease? Gayle please comment on website again . I would like to give you a phone number where you can reach me.P.S.Does anyone think Oprah or Dr.s Berman & Berman would do a show on this? We need to get public attention on this who knows how many women are suffering in silence!!May God give strength and hope to every woman to bear this until we find the answer.
CommentTo D.J.: Regarding Oprah and the Bermans; They did a show on such things as libido when the word vulvodynia was mentioned Oprah gave a big chuckle and moved on. She won't touch the topic, no one in the media seems to want the words vulva, vagina and pain spoken at the same time. Still no known cause for vulvodynia, symptoms are treated with a let's try this method. Real research needs to be done, could be several different illnesses causing these symptoms. Like headaches, many different causes and treatments. Best of luck and stay strong.
CommentRegarding who wanted to know about my acupuncturist, her name is Matia Brizman. She has really helped with the IC, i am basically 99% healed with that but we seem to have hit a wall with the vaginal problems. yes, she does do diet! hope this helps.
CommentPaul...is your partner failing to see a doctor because she has already seen doctors who have ignored her, and treated her badly? If you tell us where you live, we might be able to suggest a doctor who will at least validate her pain and have some experience with this. Many women go through months or years not addressing the vulvodynia with a medical professional, because it seems as though nothing is helping, it is unfortunatly very common from what I have observed. I will say that it is nice to see you trying to get help. My husband kind of left the whole thing up to me, took no initiative to help find a cure, and it was one of my dissapointments. He has stood by me and has helped when I have been very direct and very specific in the help I want or need, but never jumped on a website or went to a medical library to try and find an answer. I hope your partner knows how thoughtful you are.
CommentForgot to say that for me surgery would be the LAST resort. In fact, I don't know if I would have ever have gone there, and I did finally find a "cure" for me. Once you do the surgery, there is no going back, that is very scary to me. Has she really tried a myriad of things before giving in to surgery? My husband thought just getting surgery should do the trick also, like it was no big deal to him. Does your girlfriend have a gut feeling about what caused her pain?
Commentfor some reason, I keep gettting an OOPS , you're not a member of the vulvodynia group. I thought i was, that is how I got to this web site. Any suggestions? I would like to view list of docs, since I suffer from vulvodynia. Thanks, mara
CommentHi all. For the woman who wont be able to use Estrace while pregnant: try pure vitamin e oil, but sparingly or you may itch at first. I am here to ask what type non-irritating maxi pad to use, since I am taking progesterone to bring on a period I have not gotten in 2 1/2 years (going thru fertility). Thanks! laurel
Commentgot list, thanks
CommentHello, I have been suffering from Vulvodynia for 2 years now. I was diagnosed less than a year ago. I live in the Dallas, Fort Worth area in Texas. I have had no luck in finding any help. If anybody knows of doctors in this area who treat Vulvodynia, please let me know. Especially, if any of you have been personally treated. I do not have an email address to give ta this time. But I soon will. Thanks!
CommentI might be on the right track to at least relieving some of the pain if not curing it. Through my daughter who is a nurse in New york, I got an appointment with a pain management speicalist. The head of the pain management center in a New york Hospital. I went to see him Monday. He is giving me some new medicine and a special cream that he had the lab I formulate just for me. You cannot get it in a phharmcvy. It hasn't come yet. I will let you if this works.
CommentI might be on the right track to at least relieving some of the pain if not curing it. Through my daughter who is a nurse in New york, I got an appointment with a pain management speicalist. The head of the pain management center in a New york Hospital. I went to see him Monday. He is giving me some new medicine and a special cream that he had the lab I formulate just for me. You cannot get it in a phharmcvy. It hasn't come yet. I will let you if this works.
CommentHi there everyone. Does anyone know of a good physical therapist in the s. florida area? Miami or Ft. Lauderdale? My doc just started me on the estrace and vagifem, and is hopeful that it will work. However, I think some physical therapy should also be helpful. Thanks and good luck to all! :)
CommentKaren, I cannot rememeber the name of the physical therapist I saw in Miami, but Dr. Betty Bellman was the person who had reffered me to her. Dr. Bellman and her office are generally very helpful and I am sure if you explained that a former patient of hers recommended you call, that they would try to help you. Dr. Bellman is a dermatologist who specializes in vulvodynia in Miami, actually I think she is on Miami Beach now.
CommentFirst...Laurel...I have vulvar vestibulitis and was told to get pads at a health food/natural foods store. They have no dyes or perfumes added. I just received a sheet on vulvar care from my mom's doctor which said things like: remove purfumed items from your daily livings such as: laundry detergent, fabric softener, soap, shampoo, lotions that aren't 100% perfume and dye free. These items are very hard to find and expensive. Has anyone had luck with this method? I am skeptical because it came on all of a sudden and I've always used these products. Why will it make the pain go away?
CommentThankyou Frank and Jennifer for you thoughts. Of course surgery would be a last resort but it seems that many of the other remedies are less than successful what specifically worked for you Jen? Regards Paul
CommentI'm from Australia and have had VV for about 2 yrs. After reading some of the experiences of others, I've realised I am very lucky in that I don't have the 'burning' that everyone talks about - mine only hurts when I try to have sex. I do have a fairly severe vulval itch now & again which my gyno says may or may not be connected. The itch is also in the anal area & tends to be worse right after my period (due to the irritation of pads?) & when the weather is humid. Like many others, I had the usual history of numerous thrush treatments (Canestan; Monistat...even tho found out later I actually never had thrush in the first place). Then a few months after my diagnosis of VV, i had a UTI, which was cleared up with antibiotics, but then I kept getting the symptoms (with no infection present) for 6 months afterwards, including severe urethral pain, i could hardly walk or sit. Thankfully a good urologist eventually put me on some muscle relaxant tablets which worked straight away. Now & again I get the bladder symptoms again but I just take half a tablet & then it goes. After going to heaps of doctors i finally found a gyno who diagnosed the VV but her manner is awful, no sympathy at all & everything she has tried has not worked (topical estrogen cream; steriod cream; Diflucan etc. She also tried iodine, yucky red stuff which you insert & it leaks all over the bed. Nothing worked & I got fed up with her attitude & stopped going, although now I'm thinking i may not have given the treatments enough time to work. When I was single it didn't matter so much but now I'm with a great guy & we can't have sex, it's soooo frustrating, luckily he is so supportive but I feel so upset & angry. However, I've now decided to try alternative treatments before i go back to the horrible gyno (she seems to be the only doctor who treats this in my city). What I've started is some aromatherapy treatments (I've studied this area formally but only an intro course) - too early to say yet if there's a big change but I definitely feel better in that area & thought I;d mention them if anyone else is interested in the natural approach - every night I mix Niaouli & Lavendar essential oils (great for treating vaginal infections generally) - 2 drops of Niaouli (make sure it's CT1 cineole type; this is a close relation to Tea Tree oil - don;t use any more as this oil can be toxic & affects your hormones too) & 6 drops of lavender - dilute with half a cup or so of water, I insert some of this (not deeply) using an applicator and also dab the outside area with the water on a flannel. I do this at night before bed. It is very soothing; kindof tingles a little at first. Then every morning I am using Centella infused oil on the area, just a little massaged into the vestibule area. This oil is renowned in India for its healing properties on wounds etc - there are heaps of wesbsites on it. Again, I have to say that no-one has suggested these treatments to me, I'm just sortof experimenting myself. Hey - it can't be worse than the medical treatments!! Also this week I am going to a chinese herbalist & maybe trying acupuncture. I am determined to beat this!! I believe a lot of this condition is partly due to emotional stuff; I always had a bit of a problem with sex even before all this, I had to use dilators for months before i was able to lose my virginity as I was so 'tight', so I always had a bit of fear about the whole thing - not saying this applies to everyone but in my case it seems like more than a coincidence. I'd give anything now to go back to that (short)time of pain-free sex that I had several years ago! Also another thing that I've been doing for months which hasn't helped the actual VV but has certainly helped with the external itch is sitting in a bath with some green clay in it(available from aromatherapy shops-it also has some essential oils in it & is used by women after childbirth to heal their tears etc) and sea salt; I do this every second day for at least 15 mins. I am also going to try calcium citrate but the low-oxalate diet info is very confusing and contradictory, and quite restrictive. I personally feel this problem is partly due to a hormone imbalance as I have always suffered with bad PMT, really sore breasts & period pain, which is why i'm hoping the chinese herbs may help. I already take Dong Quai & this is helping me heaps with my period pain etc. As even my gyno said to me: "In eastern medicine they would say there is something wrong with your energy in that area". Why is it that the rest of my body is in perfect health except for this problem?? I never get colds or other illnesses, so for me, I feel it is something out of balance somewhere. I cried when I read Katie's story a while back...I pray she is okay as that is one of the worst things I;ve ever heard - the poor woman should be in hospital receiving around the clock medical care for such severe symptoms. No-one should have to live like that & I get so angry that this is such a silent epidemic just because it's a taboo part of the body. You can guarantee if there were heaps of men who suddenly had painful sex, it would be big news & millions would be spent on researching a cure. Sorry this is so long, it's my first time. Also just wondering if anyone has used the anaesthetic type creams during sex & do they work?? Thanks for your help.
CommentPaul, what worked for me was intravenous antibiotics. I had noticed that certain oral antibiotics magically made me better, so I finally did an IV of the antibiotic that had helped and it worked. I am not 100% but closer than I ever dreamed I would be. I don't have pain during the day, and sex is not painful, although it is not as enjoyable as when I was 20. Anyway, this does not work for everyone. I was pretty certain mine was infectious, because it started with a new partner, and I had visible redness (which by the way 10 doctors said I had no inflammation, finally one said I did, and then I started looking at myself with a mirror along with my husband, and we realized I was very read exactly where my pain was). On the meds the redness diminished and the pain went away. You can see a lot of my posts in Guestbook 16. This does not work for everyone, I think vulva pain can happen for a lot of reasons. You'll notice that a lot of vulvodynia sufferers BLAME antibiotics for their pain, personally I think this is very rare...the majority of these women talk about taking antibiotics for UTI's, or a vaginal infection, or anti-yeast creams, and the truth is almost nobody, nobody I can remember, complains about this coming on after antibiotics from an ear infection, or strep throat. This means to me that the UTI's and the vaginal infections were the beginning of the vulvodynia. Just my opinion, no formal medical background.
CommentHi everyone - I've just had my third week's shots of interferon. Of course I have no results to report yet because it doesn't work that fast, however each week my side effects have been less. I'm at work and will post in more detail when I have a bit more time to write. Quite a few posts ago, someone posted about UTIs, and problems with reoccurence. I just wanted to share something quickly. My sister, who is now 51 years old, had this problem when she was first married (at 21). She had always been perfectly healthy, never any problems at all. She had a few doctors put her through hell with things like urethral dialation, etc. She finally went to a new gyno who explained to her that some women are simply more prone to UTIs than others. She was just married, and just having sex on a regular basis for the first time. (She and her husband had only ever been with each other). The new doctor explained that just the way women are set up - urethra between the clitoris and vagina - sex, of course involves repetative friction over the urethra - and if you're prone to it, you wind up with a UTI from pushing bacteria into your urethra. His treatment - be sure you empty your bladder right before or right after sex. He also gave her a prescription for Macrodantin (sp?) and told her to take just one right before she has sex (if she knows it's going to happen!) or if not, right after. Well - no more dialation or torture treatments. It worked just fine and as I said - she is now 51 and this was never an issue again in her life. I know that this is not the answer for everyone, but I thought the information might be helpful for some.
CommentThanks Julie, Yes, I will contact her. It's great having this available. Sharing information is crucial! Wishing everyone a speedy recovery!
CommentMy wife is a vestibulitis sufferer. Perhaps I should say we both are. We were both virgins before we were married. She had never experienced any pain when using tampons, etc. She went on the pill about two months before we were married. We discovered her pain on our wedding night and honeymoon. So, in some ways it is particularly hard on us because we've never actually been able to make love. But, on the other hand, since neither of us have ever had sex before, sometimes I'm grateful that we don't know what we're missing and don't have memories of prior sex with other people. We tried estrace cream (although inserted, not applied directly to the area -- is this other peoples' experience?) bio-feedback, surgery to remove specific spots (Dr. Mikelwicz in Boston -- his manner is beyond pathetic. Don't see him.), the low oxalate diet, and probably a dozen other things I'm not remembering. Then we moved to Alabama for my job. In the last year she has been seeing Dr. Perry in Birmingham. He is a Christian and has been very helpful to us because he understands the spiritual aspects of this for us and wasn't suspicious when we told him that we were both virgins before marriage like the other doctors have been. He treats this by first eliminating all possible visceral pain. He thinks pain signals from the bladder, etc. may overflow the spine and reverse back out to the tissues. He found that Samantha had some intersticial cystitis (not bad), a slight bladder infection, and some very slight endometriosis. He treated her for those problems and put her on several different medications, and tried kenalog injections once and the pain has decreased. However, she still has level 4 pain (on a 1-4 scale) in four places on contact, making it impossible for us to have sex. The next step is alferon injections. She begins next week. After that, were down to vestibulectomy unless we find out about something else (or God intervenes). Any wisdom from those of you who have been down these roads before?
CommentTo Casey: Welcome to the site. The surgery you mention is serious and may not help. Read back guestbooks 13 to current you can skim through them. Doctors do not know what cause these symptoms so the treatments are a shot in the dark. Be wary of those offering a cure!! Research , patience and emotional strength will help the best in my opinion. The kind of pain she is experiencing must be intense, be aware of the emotional pressure she is under and watch what you say. I wish you both the strength to stay together and see this to a happy conclusion.
CommentCasey: Here are some of my experience as it relates to your wife's condition... Estrace inserted into the vagina probably won't help vv pain, since that is only in the vulva. Doctors usally tell patients who have internal dryness with intercourse (atrophic vaginitis--usually associated with menopause) to insert the cream. For us vv sufferers, the docs usually have us apply to the irritated/inflamed areas of the vulva, and that often does the trick. At least it really helped me. I totally applaud you two for waiting to have sex until marriage (my husband and I did that too); we also discovered the vestibulitis shortly after our honeymoon; I also had just started the pill two months prior to our wedding in Aug. 1997. Fortunately we've been able to have sex for the past 5 years (with off and on discomfort), but I'll pray that you two can share painless sexual intimacy like that too (we're Christians too). How did the surgery work out? I've tried to the low-oxalate diet a couple of times, but could never stick with it long enough to see results since I love chocolate and caffeine way too much! Please let me know if that works for your wife, though. I also have interstitial cystitis, which I believe is somehow related to the pain of vv. Hope this helps!
CommentDana: Thank you for your response. The doctors have had Samantha insert the estrace cream. It obviously ends up on the problem area overnight, but since she has pure vestibulitis and no pain inside, inserting it didn't make a lot of sense to me. I'll show her your message. And we both really appreciate your prayers. Frank: Which surgery do you mean? The vestibulectomy or the other laser/dye surgery to remove specific points. We've tried the latter with no results so you're right there. It seems that a lot of the research is positive on vestibulectomy for people who only have vestibulitis. Either way, we plan to try everything else first. To everyone: Samantha started the pill two months before our wedding (when she first had pain). Could there be any connection between the pill and vestibulitis?
CommentTo Casey: I don't live on this site but I do check it out when sit at the computer. I was referring to removal of the vestibular glands. I wanted you to read past guestbooks to seen what women who had the surgery thought. Off the top of my head I can remember just a few some not happy with the results and I believe one or two got relief. You can get very frustrated trying to figure out what is causing this illness, genetics, antibiotic use, injury, sexual contact, additives in food the list of possibilities goes on and on. My wife had surgery to repair a small reocurring tear. The Gyn said he had not seen this in thirty years of practice. The surgery did not correct her problem. There is always hope with the right attitude, just don't expect too much for the moment.
CommentCasey: I have often wondered too if there's a connection between the pill and vv. I have asked that question on many boards like this, but no one has really said much about it. Since my symptoms started soon after starting the pill, I would think there's a connection, but then again, that's also when I started having to take a lot of antibiotics/anti-yeast meds which could have also set it off. For me I think that beginning sexual activity was really what set it all off because that was the first time I'd ever gotten an infection or any problem "down there". Maybe this is all circular, but I wish I knew the answer. Please encourage your wife to check out this board. Of course you're more than welcome to post here, and I know that you are looking for answers too. But she too could probably use the support that this board provides. She can email me personally any time if she has questions or just wants a fellow Christian/vv sufferer to talk to!
CommentThanks to both of you. I will have Samantha check out this site. Samantha has no tearing, and not even any visible problem of any kind. Just pain in 4 spots with pressure. The vestibulectomy would remove the skin around the vagina and replace it with other tissue. We've tried basically everything else (except interferon which she is about to start). We're going to try everything before surgery (including perhaps acupuncture which she hasn't tried). One observation that I think everyone should keep in mind: I think the people posting on this and other similar sites are going to be disproportionately negative in their views on different treatments. That's because the people who post here are more often than not going to be people for whom treatments didn't work. I would like to think that I would be on here posting away for twenty years after Samantha is healed, but the reality is that if and when that day comes I'll probably be less and less interested in coming to sites like this. It's like a congressman changing his mind on a vote based on phone calls. Who calls to tell him he's doing a great job? So, all that to say, I think we should all realize that just because a treatment didn't work for people in this guestbook, it doesn't mean that it won't work in your case. Not that people's warnings aren't helpful -- they're very helpful and provide much better information about these treatments and things to be wary of than most doctors-- but the people on any message board like this are not going to be a scientific sample. Just my very unexpert observation. God Bless you all.
CommentThanks to Kristy: Will do!
CommentRe Dr. Glazer's 6/3/02 comment: I know that he wants us to use the vulvodynia chatroom (http://www.vulvodynia.com/chat.htm ) instead of this board for our regular exchanges, but every day I go there and no one else is ever there. I guess we'll just have to keep using this board until people get the hint to migrate over the chatroom. Thoughts anyone?
CommentAbout the comment on UTI's....of course it is true that you should empty your bladder after sex to try to avoid a UTI, but my personal experience is I had sex almost every day for 6 years with the same man and never had a UTI. Then I had sex with two others, no problem. Then I had sex with a third and I got a UTI, and later found out he had cheated...luckily I took a week of meds and got better. Everything was fine until the fifth guy, and then I got a UTI that started a little differently this time, and then began my story of vulvodynia. Moreover, when I had the first UTI that got cured and I had no problems for years...that one cultured with tons of bacteria...the one that developed into vulvodynia hadn't cultured. I just think there is some specific bacteria that caused mine. Now, the people who were virgins on their wedding day, it is obviously highly unlikely that her pain is caused by infection.
CommentTo Paul: I like your positive attitude try to maintain it, I myself do my best to not get depressed with how this illness has changed my wife and our relationship. Your thoughts on the folks who post here make sense, if my wife was cured I would write a final post giving the details then move on with my life. I firmly believe there are many different specific illneses causing these symptoms . Some women just have an almost constant pain, others experience pain upon intercourse, a certain percentage have a thinning of the skin and tearing, etc. . Since there is no definative cause or causes. Exactly what cure or cures have been discovered? If a woman has a period of symptomless life what is that attriduted to? Treatment of some sort, change in life style, intervention of God? I'm bothered that research to find out exactly what is happening has not taken place, these ladies are left at the mercy of doctors who do not know what is going on or how to resolve it. I do hope your wife and others hit on something to change their pain and enjoy the life they deserve. Please use extreme caution when considering surgery, you cannot undo certain things so don't push for that miracle treatment. Do read past guestbooks. When my daughter died from a genetic illness I understood how helpless medicine is at times. I believe after posting here for a couple of years that vulvodynia is unresolvable for the majority of ladies given current medical treatments. Best of luck and keep an open mind.
CommentDoes everybody notice that the band of muscle just inside the vagina toward the back is a hard as a rock? And painful? I am so aware of the tightness there and I'm sure that's why the biofeedback works to the extent it does. Maybe the botox is the magic bullet. Is a paralyzed muscle a relaxed muscle? Maybe it wouldn't matter that it only lasted three months because by then you'd have gotten out of the habit of doing it. I wish it didn't sound so scary. If anybody tries it, I'd love to hear. how it goes. all like to hear.
CommentBy saying the muscles are tight, do you mean you feel less elastic?
Commenthi everyone, just wanted to update my last post from the beginning of june. as mentioned, i went to visit dr. gordon davis in phoenix and wanted to share my experience. first of all, this guy KNOWS his stuff. he is hands down an expert. i was asking him a bunch of quesitons about all different types of treatment for vulvodynia, and he knew the latest about each. not only was he knowledgeable, he had great bedside manner, my appointment start to finish lasted 1.5 hours and i never felt rushed. and the REALLY exciting thing is he actually found something! my first problem is that i have an incompletely ruptured hymen. (he is the first gyno in 2 years that saw this! the very first gyno i went to when i was 18 said i had a very "tough" hymen and it might be a problem but none of the socalled gyno specialists i have seeing during the last years that i have been having these problems ever mentioned anything!) part of the skin is still intact and makes the opening smaller thus more painful and more likely to cause tearing and lead to infections of all types. secondly, my symptoms always get better during my period. when i told him that, he said that was significant becuase it has to do with a change in the pH of the vagina and in extension, the bacterial flora. he did a wet prep culture and found i have absolutely NO good bacteria. i dont have any lactobacilli so the bad bacteria is "winning". he thought that this was my main problem. my periods have also been unhealthily light lately (3 days or less with hardly any bleeding) so he also thought hormones could be playing a role as well. so for me, it seems like a combination of things. what he prescribed was macrogel once a week, estrogen creme intravaginally 2/3 times a week, use of a dialator each night and an estrogen patch. he said i would start feeling better in about 90 days. so while i dont know for sure that his treatments will work, i wanted to share my story becuase maybe it might give others some ideas about what might be causing their problems. one thing i do want to note though is that my vulvodynia symptoms consist of swelling and tingling/sensitivity, not the typical burning, so i am not sure how much my particular issues and treatment wil match others with burning. but heck, we should leave no stone unturned in getting well! i will keep on posting as i start the treatment and hopefully, i will have good news to share! one thing for sure though, davis is good and i definatley think him worthwhile the trip. i came from california, which isnt that far relatively, but it was worth every second of the 7 hour drive!
CommentJulie, that is SO wonderful to hear about your successful doctor's visit! Thanks for the info, and please keep us informed of your progress.
CommentIn response to posting by Eva 5/29/02 I also have soreness and bleeding in fold of buttocks. I became aware of this some time after my vulvodynia symptoms started. I have had this diagnosed as eczema, though steroid creams do not actually get rid of it completely. There is always a red line there. At least this can be seen whereas my vulva appears normal. I also years after vulvodynia started, began to develop slight eczema on other parts of my body and now have the same problem developing between my breasts as between my buttocks. I am therefore convinced that in my case the vulvodynia is part of a general skin condition. I also at the same time the vulvodynia started began to suffer an 'irritable bowel type' condition. I think this is again to do with sensitivity and inflammation of the skin maybe actually within the bowel. I have been thinking of trying to get some tacrolimus ointment prescribed for the vulvodynia. As it is supposed to be a new breakthrough treatment for eczema without the side effects of steroid creams. I don't know if it is available in England yet, though I know it is in America. I don't know if I will be able to get a prescription or if doctors will prescribe it for vulvodynia. Has anyone been prescribed or tried it? Also toilet paper definitely makes my condition worse.
CommentMarie, As far as toilet paper i agree it seems to make the symptoms worse. i buy flushable moist wipes. they have aloe and vit e on them and no alcohol. walgreens has them for cheap! my days of TP are over. I wish we could all hear more success stories. i am getting despondent.
CommentAfter 12 years of suffering,I eventually found a dr. who knew about Vulvodynia!
CommentI have been suffering from some form or another of vulvodynia for about three years now. I have been to 14 different doctors, including infectious disease specialists and dermatologists. Originally I had pain internally and during intercourse, but that has gotten considerably better during the past year. Right now I have pain along the left labia and the clitoris. Also, the skin around the vaginal openning gets very irritated and red and feels dry and parched. I have no idea what caused this and I think the doctors are pretty much taking a shot in the dark with their treatments. My latest doctor has been helpful--I just finished a course of Augmentin and I feel a bit better--but nothing has affected the pain in and around the labia and the clitoris. My next step is the intravenious antibiotics. Has anyone gone through this and can they tell me what I should expect? Also, regarding the pain on the left labia and to the left of my clitoris--upon inspection I often find that the skin is covered with what looks like toilet paper lint. I went to the doctors once while this was occuring and he said that when he looked at the area under the microscope he could see tiny, tiny uclers. I have had the blood test for HSV-1 and HSV-2 and both have come back negative. Also, the ulcers aren't red and they don't blister--it almost looks like something just scooped out the skin--the area isn't red or inflamed. Has anyone had anything like this? My doctor says it could be caused by a bacterial infection or that it could be viral. Any insight would be greatly appreciated.
CommentTo Christie: Please don't be offended that a guy is responding to your post, just in case no one else writes here are my thoughts. My wife has various symptoms also, she was getting raw areas on the clitoris. When your doctor says it could be bacterial or viral he is saying I don't know. I pleaded with my wife to make some changes to here routine and there has been some relief with the raw areas. To begin with forget what you see on T.V. and read in magazines, femine odor and staying fresh are advertising words. Use mild soap if you must, wear cotton only panties, do not wear panty hose, drink plenty of water and don't hold yourself when you feel the urge to urinate. These sound like simple things but think about it. Natural fiber clothing against your skin probably is a good idea and panty hose doesn't allow your skin to breath. Drinking plenty of water and not holding yourself flushes toxins out of your body rather than letting them cause problems. Basically be good toyourself and strengthen your own immune system by getting plenty of rest. You might look into probiotics they replace the good bacteria that all the antibiotics destroy. You have to be your own advocate with this illness because the doctors know so little regarding vulvodynia. Good luck......
CommentI have been suffering with Vulvodynia for about 4 years now and I just wanted to share what has been working for me in the past 8 months or so. I am seeing a wonderful doctor at the University of Michigan by the name of Hope Haefner. Before going there I had been on high dosages of Elavil and each time they increased the amount I would feel better for a little while and then the pain would come back. At U of M they reduced my Elavil to 100mg a night and put me on 50mg of Zoloft a night as well. Apparantly taking these two together have a stronger effect. Anyway, since then I have been almost pain free. It acts up here and there but I can finally start living a normal life again. My husband and I want to have children soon so I have been weaning myself off of the Elavil and so far so good. I am down to 60mg and will reduce by 10mg a week until I am off of it. Another interesting fact is that I also stopped taking my birth control at the same time I started reducing my medicine. I always wondered if the birth control could be contributing to my condition and this seems to support that but I can't be certain. I just wanted to share this with all of you in the hopes of helping someone else out there. Be strong and take care of yourselves.
CommentChristie - Has anyone checked you out for Lichen Sclerosus? It is a dermatosis that can sometimes start with tiny ulsers.
CommentJennifer: I have never hada UTI and have taken a lot of antibiotics in my lifetime. I took them as a child for repeated strep throat and right before my vv onset for sinusitis. I too have no medical background and cannot claim that the anitibiotics CAUSED my vv, but I wanted to add my info as an example of a woman who took a lot of antibiotics for something other than UTI's. Paul: I think you are right about the positive attitude. I don't have one anymore bec of dealing with a huge amount of crap from the medical system and some docs in particular. I hope your wife gets better care than I do.
CommentChristie, during my vulvodynia I had what seemed to be TP lint stuck in my clit (I have an inny, a small space where stuff can get trapped) and it would get cought under the skin of the labia nearest to my clit and look like little cysts. It sounds awful, but these areas where very painful to the touch, and somtimes I would tug at them and the white stuff would come out and finally it would heal and I would have some releif. The cysts where VERY small.
CommentI do understand that a few men are here in support of their wives and girlfriends - but any man telling us about hygiene, odor, and cotton underwear, etc. has gone a bit over the line. For may women, this is a hard enough subject to discuss without the men reading on and adding their comments. I understand reading the site and looking for information - asking questions and so on - but perhaps it's time for the men to start a support group of their own. Any woman who has ever searched the web for "Vulvodynia" knows all about hygiene and cotton underwear already! Where are your wives? Why don't they post? And if they don't want to deal with their problem - stop giving advice to the rest of us. Sometimes men looking for information is ok, but it is starting to feel like some of you are just lurking around!
CommentTo anonymous who questioned men posting here: First, let me say that I understand why you would have a problem with men discussing such intimate details and giving advice on them. If I was you, I would probably feel the same way. We men should be careful in posting here not to "go over the line." However, you completely discredit the good point you just made by insinuating that the men who post here are somehow getting some thrill out of this. Um, what?! I know there are some pretty demented human beings out there, but I can't imagine being so sick as to enjoy conversations on this topic. I'm looking for answers and trying to help others by letting people know what my wife has tried. My wife's vestibulitis has effected me almost as much as it has my wife. I've been encouraging her to post here, but she hasn't yet. We don't have home internet access and she doesn't have it at work. So, I'm trying to be proactive and find some answers for her. I understand and take to heart your point that we should be mindful of the difficulty of hearing some things from men, but it turns my stomach that you would even hint that any of us are getting some enjoyment out of reading and posting here. A mens' support group is a great idea by the way, but I'm afraid it would just be a pity party instead of a place to discuss treatment options since none of us would be getting the treatment. And believe me, I would give my left arm if this was a problem with my body and not my wife's. I understand your basic point and we should be sensitive to that, but please be sensitive to what we go through as well and don't add insult to our injury.
CommentRegarding the post I wrote on cotton panties etc. I am not lurking around or getting sexual kicks here. Many Women do not realize the pressures put upon them by the advertising industry. The suggestions I made may seem very basic to someone who has suffered for a while and gotten a thorough education on this subject, but what about the woman who doesn't know where to start. She is told it is in her head or is given a multitude of medications to mask the symptoms. My wife is with me sharing with our home and children, she does not post here or even read here because she feels nothing can be done. I do want to stay involved on some level. One point on closing, if we can't as a people get beyond the stigma of sexual issues and problems what chance do we have for resolve? Sure it is a most private matter but it has to be made public. I am not fantisizing while reading these letters, I'm thinking is this woman getting sound advice, is what she doing causing more harm, can I suggest something that may help if even a word of support. Please don't take offense because a man or men visit and post here, we are in this together. Open your heart and mind to the support and contribution that it offers. I'll agree few men care but that must change along with the women who do not suffer and do not care.
CommentCasey and Frank - Please re-read my post. If you found some insinuation of "sexual kicks," you completely misread! I did not say anything of the sort. Casey, I know you are new here, and obviously seeking information. But Frank - giving out advice on women's hygiene is offensive! (not sexual - but offensive!) If someone is on this site, these guestbooks are certainly not the first thing they came upon. It' s bad enough the constant repeating of the fact that there is not known cause or cure, and that we are all being experimented on, etc. But it feels at this point that you are trying a little to hard to relate. You really have not idea what this is like!! You may be the most sympathetic man in the world, but you don't live in a female body, and you'll never really know! I think it would be great if you want to start a support group for men who have partners who are suffering with this problem. But there is a point where you should back off and leave it to the women who are trying to exchange information here. Sorry Casey - I understand why you are here right now. But if a year from now your partner is not actively trying to find herself some help and you are still posting here I would feel the same. I don't mean to offend anyone - but this is hard enough to talk about as it is - but for some women it may feel it's too difficult to talk freely about the specifics of their symptoms, etc. without some level of "female" privacy.
CommentTo The Mystery Lady: I'll back off to satisfy you but I don't agree with you. Women are bombarded by the advertising industry regarding hygene and as a result you use chemicals that may irritate or infame sensitive tissue. I mentioned the cotton because synthetic materials can cause skin problems. You assume all new ladies here know these things. I think of this illness and compare it to pregnancy and labor in an way, you sacrifice privacy for the greater good of a healthy birth. I firmly believe the longer this problem stays hidden the longer meaningful treatments will take. I am regretful for the repeated mention about causes and cures, I say that because some doctors and holistic healers promise the world and cannot deliver. I'm not trying to depress anyone here. I'll shut up now but I do wish you would open you mind to the importance of taking this issue out of the shadows. Regarding a men's support group I can't imagine where or how that could come to pass if women will not openly discuss vulvodynia. I still see Oprah laughing at the word, that is insulting and sad and damaging. I won't respond so have the last word, if shutting me up helps you so be it.
CommentWHAT HAS HAPPENED TO THE POSTINGS HERE? THERE ARE NONE FOR JUNE?
CommentJennifer: Thanks for responding to my message about the random lint and ulcers and the pain in my labia and clitoris. I'd love to talk to you about the condition further--could you please post your email address or send me a message at: cdm3192@yahoo.com? Thanks.
CommentFor anonymous: Frank has been posting here for some time, and while he may not always have new information, I have to say that he is far more supportive than my hubby is. My husband can't be bothered by it anymore. I think he has become more selfish each year that goes by and no cure has come. In fact, he doesnt even realize how selfish he is when it comes to me not being able to have sex. I am guilty enough about the issue without his unsupportive attitude. At least Frank has heart and listens in earnest. I think that you are showing insensitivity on your part. It affects men almost as much to a degree when they have to see a partner go through an excruciating illness. And while many choose to suffer in silence, I have had mine for 2 decades, and you know what? I dont care who knows. Spreading the word is so impotant. All of my family and friends, both male and female, are aware of the siuatuion and are extremely supportive. So please, dont insult people on this site, save it for the chatroom.
CommentTo whom it may concern: So, apparently I have a year to look for answers for my wife and then I'm out? Thanks. I have a lot to say, but it's not worth it. Dealing with this illness is enough. I realize that you're going through everything she is, so I'm not going to blast you. Frankly, no one here needs anything else on their plate right now. I'll try to limit my posts to occasional questions and just read what everyone else says if it makes you more comfortable. God Bless.
CommentDoes anyone's pain really get bad from sitting? Or a soreness after intercourse? If it weren't for sitting, I don't think I would feel so bad. Sitting makes me so sore in one area. If I don't have that point pain with a q-tip but really get sore in one spot, could I be a candidate for surgery? Does anyone have an suggestions or experience this type of pain? I don't really have that burning that most experience on a constant basis. Any suggestions?
CommentIn regard to men posting on this site, I'm very thankful that you do!!! A few months ago (a year ago? I'm not sure how long) there was a man who posted and was very cruel w/his comments. THAT is the only male posting that I've ever seen that shouldn't have been here. My husband chooses to believe that it's my fault that I have this disease and that I've not tried to correct it. So here I am, I'M the one with the pain and I'M the one that is supposed to be supportive for him. He WON'T read this web site and I wish he would since he chooses to believe that I've either made this up or haven't tried to get rid of it. Isn't it interesting to lash out at the wounded party here? Anyway, one time, ONE TIME, I got my husband to look at this site for about 5 mins. It so happened he read THE ONLY post I've seen here that was from the rude man I mentioned above. The post stated that he lost his wife (or girlfriend?) to another man and her vulvodynia miraculously went away with the new man. My husband has used this to stab me in the heart. The sad thing is I don't want to be with anyone else--so that's not the issue at all, but it's a convenient way for my husband to support his ideas. All this said, I think it's wonderful that there are men out here who care about their wives and empathisize w/our plight. I also don't find it offensive referring to feminine hygiene--as a matter of fact, I thought it was put extremely tastefully and to make us NOT FEEL GUILTY or think that in some way we have this because we're not clean. Thank you, Frank, Casey, and any other of the wonderful men who care enough to post. God bless.
CommentHi, Im a rather young girl of age 16. I have been having pain off and on for about 5 years now. You can imagen it doesnt help me in my teenage life. When I have pain it is usually a pressure of some kind and burning of pain at the opening of the vagina, but not on the surface but behind the skin, making it impossible for a general physician to figure it out. I just recently when to a new doctor and she says that I might have vestibulitis, and something about the nerves and becoming inflamed. But I am not sexually active nor that I have ever been molested or anything of that such. I dont know if it is possible to be born with it or not to be the carrier of it. Im basically clueless. All I know is that it affects my mood and keeps me from doing the things I love and being around people I love, I become tired and annoyed by everything. I have a lot ahead of me in my life, and I dont want to be suffering all my life. If anyone has anything they can tell me, or ask me questions that could maybe expand my experiences with this problem. Please Please email me. Im to young to go through something like this. Thank you very much. Great health to you all.
CommentI think anyone who has hung around on this site for a while knows that Frank only has the best of intentions. Plus I firmly believe that all of these products made to cover up feminine odor every day pantyliners etc., are to capitalize on women that have BV and other problems that have gone undiagnosed.
CommentI also firmly support Frank & Casie's presence on this site. I think it's good to get a male perspective.
CommentFor Livia: I too, went through the same thing at about your age. Of course, I had it as a child too. A gyn that was a friend took a look when I was in my teens and said there was nothing there. I kept saying that the pain was behind the skin. I really had no redness at all, just uncomfortable pain. You may want to have a specialist in vulvar pain take a look. When I went to see Dr Davis last November, he did see some redness on meticulous examination. None of the MANY doctors in 15 years before him ever saw that. It is nearly invisible. You are so young and that may work in your favor, I do hope that you will seek the right doctor until you find relief. Dont ever give up. best, laurel
CommentFor Laurel: I haven't seen you post in a while before tonight and would love to hear about your progress with Dr. Davis's treatment. I too went to see him and unfortunately did not get any help. He did do a thorough exam, and stated that he believed the problem was coming from my cervix. But I could not tolerate the Amino-cerv cream he wanted me to use, and his only other answer was to put me on birth control pills. I was already on birth control pills when this whole mess started! I really can't fly from the east coast again to see him, but I would love to hear about you. I just want to say to the men - of course anyone can post here, it's the internet! I too like to hear men being supportive of their wives, but I do see the point from the above post that men's involvement in the discussion may be making it difficult for some women to get personal in a way that they may need to in order to get some help here - and let's be sure that the women remain the priority. I don't think that the person that posted about the men was saying anything about "keeping it in the shadows", but women do need to feel that they have a safe space to get graphic about some of this stuff. Like I said, we all know it's not private - it's the internet - everyone is welcome. But have some respect for women dealing with a very difficult problem. Support from men is always good - but advice may (I do mean may) seem intrustive to some . . .
CommentI have een reading through the posts regarding your presence. There was a situation like this on one of the listservs i subscribe to. Sigh... I don't know what the answer is. I do know that there are some women who really feel that they cannot discuss vulvodynia in the presence of men. However, the men who want to gather nfo for their lady loves are stuck for a place to post. There IS a men's support list, but as Caey (I thnk) pointed out, it is mostly a pity party. My hubby joined it and mostly he got messages from men who just complained about how they weren't "getting any". My hubby isn't like that. He is the most supportive person on the planet, and not just around vulvodynia. Anyway, I am just rambling and I have no real solution to offer except for everyone to try to remember that we are all dealing with a painful, sensitive issue. Perhaps for the women who really don't want a male response, they could put "no men please" in their message and the men can just respect that.
CommentHello M! I miss chatting here but want to reserve the much needed space. Dr Davis is wonderful. My problem is different than yours, unfortunately yours seems harder to treat. I have cytolytic vaginosis from lack of estrogen. I am sure I would be far better now, but my proctitis he discovered is far worse than first imagined. I will most likely have to see a specialist in my area for that, and hopefully all will imporove from there. I feel the v.v. wont get much better until the proctits is treated first. And mine is not confined to just the rectum, which is the most common form of proctitis (ladies with rectal symptoms please have a rectal exam, the colon and vaginal areas are lying on the same nerve). I have more of an ulcerative (proctitis is a form of colitis) type that extends the length of the intestine. I can feel it as far as my 2 lower ribs between the stomach, all on the left side, ergo my v.v. is left sided. When this all started in '92, it was from a bacterial infection. Proctitis is caused by 2 things: STD's and antibiotics. Since the v.v. started from one of those, I dont doubt it all happened at one time. The unfortunate thing is that they have to find the root of the proctitis. If it was from the STD they treat with doxycycline, if from antibiotics, sulfur meds. So, I am weary of making the v.v. worse, but feel there is no choice. I am also currently seeking fertility! its been trying here the last few months. But in any case, I am upbeat, and the estrogen Dr Davis had put me on has kept flare ups less frequent and severe. My heating pad is wonderful too! Thanks M, I will post when I have any new info. Bless you all, you are all continually in my prayers, laurel
CommentThanks Laurel - one more question, how did you find out that you had proctitis? Colonoscopy?
CommentFor M: He had some sort of speculum and orginally saw it in the lower rectum. When I went the next time, he went up as far as he could and saw redness and inflammation, and said no wonder you arent emptying (I have IBS, always constipated for days, followed by a bout of diarrhea, then the cycle again)! A local Doctor in Mass. will probably want to do a colonoscpy for a more thorough exam, but I dont think I want to be sedated and go through that. I am hoping he'll take Dr Davis' word and prescribe something. I have been putting myself through enough, and need a break! Good luck to you M, I hope you find relief soon. laurel
CommentHello Everyone. Frank, you may or may not remember me. I haven't posted in quite some time, but I do believe you have every right to be here. Most of us don't even post our names or email addresses and should in no way fear what anyone has to say. I think you as well as Casey have contributed quite a bit to the sit, and I believe that you should continue. No one is hear to "bash" anyone. We are just looking for answers. My husband like you, is very much interested in helping me find a way to help this disease. Although it is hard for all of us, this is the internet, and anyone can post. I have no idea who you are, and you have no idea who I am. I have been a sufferer for only 2 years, but I have to learn to talk about it. That is the only thing that keeps me sane. I hope everyone continues to post and gives new ideas. That is what this site is intended for.
CommentTo Stephanie C.:Thanks for the support. We don not know who we are speaking to on the net, I say I'm a forty nine year old guy but I could be a twelve year old kid, I wish! I respect the wishes of the ladies here they are the ones suffering and if they need privacy to share then I'll back off. I had hoped we could go beyond the shyness and uneasy feelings. I can't force someone to feel at ease and I will not insult my way to prove a point. I still think openness will do more for the masses here than keeping vulvodynia a secret among a few sufferers and their families. I'll still read the posts, wonder if anyone is doing harm or neglecting something that might help a bit but unless a question goes unanswered I'll stay quiet. You would really have to know me to understand the kind of guy I am, while I have not shared your pain I'm sensitive to it. Thanks again and my best to you all including the lady who thought I was "LURKING".
CommentI am glad to see husbands posting on this site. I only wish my husband were interested enough to do so. Mine cares about what I go through, but he feels helpless. He's a shy person and would never think to post here or anywhere else.
CommentI have been plaqued for the last six years with burning and itching. I was diagnosed with lichen schlerosis by one doctor who prescribed a testosterone that helped the itching some. Then I stopped using it after the severity of the itching went away. Another gyn said that I did not show signs of lichen schlerosis. In the past 15 years I have had a lot of yeast infections and have not liked to wear jeans or tight pants for 25 years now and I am 44. I used premarin for about a year but did not see any improvement in the burning, itching and tearing of the skin. Now I'm using clobesterol whcih gives me some relief. My condition not only comes about when I have intercourse. I can just be going along fine for a couple of days and it just starts up, without any intercourse. My husband is very understanding about the situation. Sometimes flare ups are worst than others and I use more clobesterol, so I have now sarted to use Vaseline for baby's diaper rash treatment and it is cheaper and works great. I probably itch and have slight burning 25 days out of a month. The tearing doesn't come as much now because I can feel when it is about to happen and we change positions. Please e-mail me if you're having the same problems or even better if you used to have them. Thanks and we are all doing as Romans 4:17 says to .....calleth things that are not as though they were. Thanking the Lord for our cure. Yours in Christ, Glory Slater
CommentGlory: I have had much the same experience as you. Lots of us here have. From my personal experience I would avoid steroid creams, like I think clobesterol is. They have only caused me more problems. Have you considered topical estrogen cream? It has worked wonders for me. I am also a Christian and appreciate the encouraging words you spoke in faith that the Lord will heal us eventually (whether it be in this life or the next).
CommentGlory - I too was checked for Lichen Sclerosus about a year ago. I wanted to tell you that my doctor took a vulvar biopsy and had it sent first to the regular lab, then to a dermo-pathologist. Fortunately, I do not have that disease. Aside from the redness and irritation that I always have - what made my doctor suspicious of Lichen was that I was covered in tiny ulsers. Turns out that the ulsers were from Terazol 3, which I had been given the week before my exam by another doctor for a very bad yeast infection. The little ulsers (too small for me to see myself) cleared up on their own in about 2 weeks. While I was waiting for the biopsy results I did some digging on my own and well as spoke with my doctor about the details of Lichen. While "Vulvodynia" really only means "vulvar pain" which we all know can come from numerous different sources - Lichen Sclerosus is an identifiable disease. It's tough to treat, and may always need to be maintained - but unlike those of us who don't know why we are suffering - Lichen's definately is treated with Temavate (sp?) brand clobetasol steroid ointment (my doc said that the base of the brand name is better than the generic) and perhaps some testerone cream depending on the severity of the situation. So, you have to find out if you really have Lichen, then if you do, Temavate is it - if you don't, you may consider staying away from steroids like the rest of us. I hope this helps.
CommentI just wanted to add that by biospies were done by a gyno-oncologist at Pennsylvania Hospital in Philadelphia. He is not a vulvodynia doc, so I don't want to post his name, but he was definately a reliable place to be for a diagnosis like LS.
CommentJennifer. I am curious to know how much your insurance company paid for your IV drug therapy. And were you and your husband both treated at the same time or did you try it and then it worked and then he was treated? I think you said that you had to be treated twice. Were you charged twice? I would appreciate the info. Thanks......
CommentHi all, I have been in a relationship with my now fiance for 4 years and because of my vulvadynia sex has been much too painful to engage in. I was reading about the use of Lidocaine to numb the area before sex and would love to hear about your experiences. I am a bit nervous to use it since it says inside the box that it caused cancer in lab rats but hopefully they are talking about using huge quantities.
Commenti have just read your post christie -i can't believe your symptoms are just like mine!! I had a bad bacterial infection(e.coli and some other stuff) that went away with some cipro. the bacteria was in the hood and was so painful. That cleared up, but i still have "ulcers and lacerations" it looks like and is soooo painful. It also looks like there is tp lint around the lips, even if i have just rinsed!!!it sucks but i am so glad to finally read something that sounds like what i have. My doctor does not think it is vulvodynia, but a skin problem and the next step is a biopsy. I am so scared, has anyone had one of these??? I also was told last year that i had herpes, because i had some sores and redness. i thought it was impossibel since i had only been with my boyfriend for the past 4 years! Anyways i never had my blood checked until this past week, my doc wanted to rule everytinh out and get this-the blood for herpes wasNEGATIVE. I have lived the last year of my life thinking that i had that disesase and i DO NOT!!! I am sooo angry, and my relationship was almost ruined and was very hard for me and my boyfriend to work things out, but we did and are still very happy, he is so sweet to wait for me to get better....anyways, i would like to know more about lichen or any other disease that causes symptoms like ours, this is so hard to go through , anyone please feel free to e-mail me. Thanks!
CommentI did do two IV's. The first time my husband and I did it together. My doc found bacteria he did not like in both of us, so we both did it. This IV helped some of the vulva pain, and got rid of most of my other body symptoms....It got rid of my sore lymph nodes, and the bad vaginal odor. The second IV I did first, and then once it worked, my husband did it. We did not engage in any sexual activity for 6 months getting through all of this. I am not sure how much the insurance paid, I think it was around $2,000 of the $3,000 for each IV, but I am not sure. The first IV's Dr. Toth wrote a letter to my primary, and she ordered it so it was free. The problem was I had an allegic reaction, and she did not give a shit! She did not return my calls, I swear I was afraid I was going to die! I had my mother-in-law sleep in bed with me, because my husband was out of town, and I was terrified, but not terrified enough to stop taking the meds. I was so desperate I was ready to die or get better. It is so awful. The second IV was no problem, I did it with Dr. Toth, and he asks that you call him every day so he knows how things are going....what a difference. There are doctors who care.
CommentSo the first IV was done with your primary physician and not Dr. Toth and the second was with Dr. Toth? Did you immediately start to feel better with the IV therapy and would you say you are close to 100% better? How was your husband through all of this. Did you stay home with the IV or were you able to go out of the house or work? Sorry I am asking so many questions at once.....
CommentI have been taking atarax and estrace cream for 3 months and haven't noticed a change although my doctor thinks i experienced less pain with q tip test this time. did anyone try the combination of these two and have success and if so how long was it before you noticed any improvement? Also does anyone know if VV causes fertility problems? Thanks
CommentI have two questions for anyone who can offer any answers: 1. My wife tried Kenalog injections recently. The doctor gave her one set of shots, did a q-tip test two weeks later, and said she hadn't had any improvement so he discontinued that treatment and we moved on to interferon injections (currently). Was this enough time for kenalog injections to be helpful? Has anyone had kenalog injections and had little or no improvement at first, but more improvement later? 2. My wife is using a squirt bottle to wash off after urination and believes that she doesn't need to avoid oxalates because she is washing away any oxalates and keeping them from irritating her skin. Any thoughts on this? Also, does anyone think that maybe oxalates can be a problem apart from the skin irritation after urination or that perhaps something else common to many of the high oxalate foods is really the problem? She tried the low-oxalate diet for about 1 1/2 to 2 months and saw no improvement so she stopped and is hesitant to start again. Understandably so. Any illness that takes away both sex AND chocolate must be of the devil.
CommentHi all - I just had my 4th set of interferon shots. The side effects that last for a few hours after the shots (flu-like symptoms) have lessened a bit each week, but they definately still happen. Susan Spadt in Philadelphia really has all her irons in the fire as far as vulvodynia and related conditions are concerned - she always has new information about treatments everytime I go to see her. If you live around Philly, I recommend her strongly. I have been noticing that people are asking a lot of questions about things that I personally have already tried. I've been to Dr. Toth in NYC and to Dr. Davis in Arizona - both very kind doctors - but with no success whatsoever. But I do think for many who post here that these doctors may be helpful. BIOPSIES: I've had three vulvar biopsies, they are not fun, but if you need one - JUST DO IT!! They will give you a needle to numb the area first - a little painful, but quick. After that you don't feel a thing. A biopsy is really important if your doc is suspicious of any vulvar dermatosis. I'll answer any questions if anyone would like to e-mail me directly, but I don't want to take up too much space here. If I told my entire story - guestbook 19 would be refered to as M's guestbook!!
CommentMiri: I've had the same great results as you with Estrace. But I've never heard of atarax. What exactly is it? Also, vv does not cause infertility or pregnancy complications, according to my doctor.
CommentCasey: I agree about the oxalate issue. I just rinse after urination since the diet never seemed to work for me either. I hope it does the same thing as never eating the oxalates in the first place, but I have no evidence. I agree that the chocolate restrictions is over the line too!
CommentDana, I'm saying that I haven't had any noticeable results from Estrace. Atarax is an anti-histamine. haven't noticed any real changes from either. anyone out there have success with the combination?
CommentHi everyone, this is my first time on the site and have read so many of your conditions and medications that are working for you and aren't working.I think this is a really great site and will continue to write.Just to tell you alittle bit about myself, I'm 41years old , have the greatest husband on this earth and I was diagnosed with vulvodynia 2 years ago.Like all of you I had been from doctor to doctor before one could tell me I had vulvodynia.Unfortunately my doctor knew what the condtion was but didn't know how to treat it.I had been on all of the creams ect. ect. until I finally talked to a women on the web who helped me become totally pain free. I call her my internet angel because the regiman truly has cured me of this debilitating condition that soo many women suffer from.I really hope this helps so many of you!!!! The first thing my doctor did was put me on Paxil (not because your crazy) but because the Paxil relaxes the nerve cells that are around the vagina.For some reason!!!!! these cells have changed and became thin. Also along with taking the Paxil, I take 10 Citracal tablets a day. The combination of these 2 drugs have totally changed my life.!!!! When you start out on the Paxil you have to start out slow at 10mgs because the drug is so powerful.I took 10mgs for the first month, then the second month my doctor increased it to 20mgs and the next month to 30mgs and finally the forth month to 40mgs.Each day you take the Paxil and 10 tablets of the plain Citracal ( not the Citracal with any vitamins like +D) You can get the Citrcal at any drug store or Walmart.I found that Walmart was the cheapest.It took me 4 months to get to the point where I was pain free and it may not take that long for some women.It may not even take that strong of dosage of the Paxil, you just have to see what works for you. In my case it took the 40mgs and the 10 Citrcal tablets to cure me.I hope this is helpful information to so many of you.If you'd like to email me to talk more about it please feel free to.I really want to help as many women as I can. Thanks and good luck to you all you'll be in my thoughts and prayers. Shelly
Commenti have just learned today that i have to wait until the middle of juily to have a biopsy and go another month of not knowing what is really wrong with me, it really sucks
CommentShelly: is it your opinion that the Citracal has worked because it reduced the oxalates in your urine that irritated your skin? I definitely want to try Citracal because it's so easy to take (and beneficial to your bones), but I wonder why you recommend not taking the kind that has the vitamin D in it? Did you find from experience that it didn't work as well as the plain kind, or did your doctor recommend it?
CommentDana,Sorry I guess I didn't explain about the Citrcal so well,I found that if I used the + vitamins it really irritated the vagina even more. In fact I don't take any kind of vitamins for that reason, only the plain Citracal. Hope this helps. Take Care, Shelly
CommentMy husband was great woth the IV's and everything. He never went out of his way to research for me, but when I told him I wanted to try something to try and remedy my problem, he did whatever I askes, including flyiing to NYC, and taking meds. Now, I do want to say that I personally only recommend the IV if you have had significant improvement whike taking oral antibiotics. What I mean specifically is that you see that you are much better while taking the antibiotics, even if you are horrible after stopping. What is important is that you were great while on them. My improvement on Augmentin and doxycycline were miraculous. There was no question about it....many of us will think some treatment seems to be working, but we are not sure, or at first we thought it was helping, but now we are not sure....non of that iffy stuff, it helped me period! The reason I say this is because only about half the people I know who have done the IV's see an improvement, and I hate for someone to go through that without a good outcome. Moreover, I think that it is important to see what drug is working for you, to try to tailor your meds on somewhat of a subjective basis. To answer your question the first IV was administered by my primary, but on the advise of Toth.
CommentI have been diagnosed recently with this condition; I feel burning and itching; it's ruined my sex life totally; I've been given a cortisone steriod cream; and have to change to a second cream in a couple of weeks; I haven't noticed much improvement; I'm hoping someone might have come across an herb or herbal cream that gives some relief
CommentRegarding the Lidocaine.....After not being able to have sex for a long time, I decided to try the Lidocaine. My doc prescribed it. It does work! Just rub it on, and in about 10 minutes, the painful area get numb. It really takes the pain away. Karen
CommentThanks for writing back. My question is would you have been better off if Dr. Toth treated you the first time (in your opinion)? And as far as you say with the antibiotics that you should use the one that feels best for you. How would you even know what one to use unless it was prescribed for a certain bacteria that was found. I was given flagyll originally and it felt like it was working but I think I am going to need a totally different antibiotic altogether. Because flagyll does treat some bacteria but I don't think it is as potent as some other antibiotics out there. Anyway thank you for your info and am glad I saw your writings on here because you helped me alot.
Commenti have recently started the estrace (1 1/2 wks ago) and now have a constant burning, from the cream. is this supposed to happen? how long does it take for the burning to go away, and for the estrace to start to work? thanks!
CommentKaren, i had burning intially from the estrace as well. it lasted a few weeks. i put vitamin e on the area too and that seems to help. Miri
CommentCasey, Question#1-I had successful treatment with interferon after a 6 to 8 week course of treatment. I do not know the normal length of the Kenalog for when I went thru this they did not know that Kenalog worked for someone with this disease at the time. Question#2-Oxalates is a strange bird, but I can tell you this. There is this doctor named Clive Solomon I believe whom does the urine test proper. A gal in the clinic with me had very succesfull treatment on the diet and taking calcium citrate with D. She is completely healed as far as I know with an occasional flare up. The hard part is were all very much the same, but many different things work for different people. Hopefully one day they will figure this whole deal out so we can all get successful help. Good Luck to your wife and All Vulvadynia sufferers.......
CommentFlagyl is actually very effective when it is prescribed for the correct bacteria. Something about how it works on the bacteria's cellular structure or something. The thing is, if the bacterium that is the problem is not susceptable to that drug, it does nothing. Toth is very willing to admit that he may not be isolating the actual problem bacteria. The broad spectrum drugs that he prescribes might accidentally be catching a bacteria that he did not isolate. It is so frustrating. That is why I think how we "feel" on oral antibiotics really matters. When I did the first IV with Toth, I was hesitant, but he had found a mess of bacteria, which he believed would have a bad effect on fertility. I had had 3 miscarriages at the time, and thought I might as well go for it, it was his prescription for my fertility problem, and we both hoped it would help my vulva pain. A while later I had two ectopics...I finally had surgery to see what the hell was going on in there, and the surgeon found tond of adhesions, a mess, as he called it. He detached my falopian and ovary from being adhered to my colon on my left side (the side where the found ectopic was) and said it looked like scarring from a long standing infection! Following surgery I had horrible bright yellow discharge, like I had never seen. The surgeon prescribed Augmentin and Flagyl together...the symptoms got better, and then a few days after stopping the meds, I was sick again. That is when I went to Toth again, for the second IV. As a side note, the surgery fixed the majority of my digestive problems. I had been diagnosed with inflamation of the colon, and possible reflux (but was not willing to do the upper GI, because I would not believe all of a sudden my stomach was nopt working right) and all of that discomfort went away for almost three years now. I am just starting to get some on and off mild symptoms back, but I continue to think that this is scar tissue problems.
CommentJennifer: I am really interested in your case. I always assumed that antibiotics were responsible for my v.v. I did let a bacterial infection go for a long time, which was part of the problem. When I finally did get it treated with flagyl, I felt great for 2 weeks, then regressed, so my gyn retreated with flagyl (I got worse). I dont think I needed the second round, I was never tested but since I had the all the same symptoms we just figured it was back! Now, I too, have inflammation of the colon. It is severe, and since that whole episode was in 1992, I have been living with colitis or proctitis and all the while was believeing my rectum pain was just part of the v.v. But reading about my proctitis, it can be caused by the bacterial infection itself, or by the antibiotics used to treat it. In either case, I have a 50-50 chance of making my vulva worse, but am left with no other choice. I think that both the infection as well as the proctitis contributed to my state. I have read that flagyl or sulfa family drugs can clear up proctitis, but since I got worse on that regimen, I am going to try the other avenue and seeing that it helped you, am going to attempt the doxycycline which is the other drug mentioned that may help. I hope this works, but cant get in to see my new PCP until July 8th. But it was nice to see that you, too, have a similar situation, so I feel there is some hope. Do you stil have colon symptoms? The cure rate for colon disease is not 100%, but manageable through diet, which is fine by me. Thanks for the info. laurel
CommentThis is my first time on this site. I live in upstate NY, and I am 26 years old. I have had vulvodynia or vulva vestibulitis for 2 years now. I have been seeing one of the best and well-known specialists for a year and a half and he has tried a variety of pills and creams, none of which worked. I had a vestibulectomy last year. It was a long, painful recovery and unfortunately did not work for me. The area around the vaginal opening is now all scar tissue, and the inflamed area relocated just above the vaginal opening and all around the urethra. I have also had the steroid injections-very painful and also had no effect. The specialist gave up on me, and reminded me there is a 10% failure rate. I am now trying a holistic method and talking to a NP in Maine. She has me on different vitamens and minerals and is putting me on diets to see if I am having an allergic reaction to certains types of foods. Lidocaine response: Lidocaine is the only reason I can function each day. I had to have a special cream made for me because the usual Lidocaine cream had a base that burned me. I use it every few hours so that I won't have pain when I walk or sit. I also use it before sex. It helps during, but I still burn and sting after sex. To Kristy: Like you I am young, and I am engaged to be married. Our sex life has been almost non-existent for 2 years now. Whenever we try, it is a huge process: applying cream ten minutes before, going very slow, and pausing so that I can mentally relax my muscles that automatically tense up and spasm in defense. My fiancee does not pressure me, but I do feel very guilty and inadequate. I know that he is not satisfied. He also does not show me affection like he used to. No more hugs, or kisses, or holding hands, etc. I know he also feels like my medical bills are a hassel, and therefore I feel like a burden. I am hoping that I get better this year, because I am not sure we are going to make it to the wedding next summer. I think we may go see a counselor together. I can understand what you are going through.
CommentLeanne, or anyone else who can answer: How long did it take for you to start noticing improvement with the interferon injections? Was it gradual or all it once? If anyone else has any thoughts about the normal treatment period for kenalog injections or just rinsing after urination instead of foregoing oxalates I'd love to hear from you.
CommentA question for everyone: How many of you have had your uterus seriously looked at? Has anyone had an endometrial biopsy? I kind of feel like it's the bit that gets skipped in all of my doctor visits . . .
CommentKaren, you can get Estrace cream made up special. They remove the ingredient that causes the burning. I am going to ask for this on Friday when I go back to the doctor. Casey, the doctor told me to eliminate (7) oxilates and to rinse also. She said to eliminate them all would be too overwhelming. She said don't look at the internet about oxilate diets because it's too scary. Eliminating the 7 she gave me was devastating enough. She says you can eat them in moderation. It's kind of hard to eliminate them all together. They were, (1) Spinach, (2) tomatoes, (3) berries, (4) caffiene, (5) citrus fruit, (6) chocholate and (7) brocholli. All the things I LOVE and that are SUPPOSED to be good for you.
CommentBec, Can any pharmacy make up the "special" Lidocane creme without the burning ingredient? Am I to understand that it is alright to wear everyday? Sitting at work causes such pain.
CommentA little more info....I had terrible anal pain along with my vulva pain. It was red, inflammed, and felt less elastic similar to my vulva. That has recovered as well after my treatment. I had had a colonoscopy back over three years ago, and that is when the doc said that I had inflammation and that my rectum looked like it had reduced blood flow, he said he never expects to see rectums like that unless it is someone over 70 years old! The doc said there was nothing much to do about it, and that I should avoid foods that seemed to aggravate it (for me that was foods that were very crunchy--raw veggies, nuts). The thing is the colonoscopy does not show ehat is around the outside of the colon. What might be tugging on it. I had all of those adhesions and some endometriosis sticking all over the colon. Doxicycline made me feel much better too, in fact the doc that prescribed that for me, said many of her vulvodynia patients seem to improve while on doxicycline.
CommentJennifer: I appreciate the information. I hope it will be of some help. I, too, am extremely inflamed in the colon. I can feel the swelling from the rectum to the top of my stomach between my ribs, left side. I think I have my work cut out for me. The same foods seem to irritate me. Yes, raw veggies. So I understand why now some of the allowed foods on the low ox diet were aggravating me! Now, I have to incorporate the two diets and its murder. I have been trying to get pregnant also, and my mom read that proctitis can cause all sorts of fertiltity problems. I have to take the doxycycline anyway for a procedure so if those 3 days help, I will seek further treatment. I did not now that doxycycline helped some with vulvar pain. Very interesting. Of course, I will be taking Diflucan along with it just in case. Thanks again for the helpful info. Wish me luck... God bless, laurel
CommentRe M.'s question, I had my first ultrasound today (transabdominal and vaginal) because of the weird pelvic pains I was having. Doctor thought it might be a fibroid tumor in my uterus, an ovarian cyst, endometriosis or PID. Turns out I have only a small cyst on my right ovary. They're going to check it again in 3 months to make sure it isn't growing. Everything else was normal, but it was so weird to see my uterus on TV! Plus, having to have a full bladder during the exam was awfully uncomfortable.
CommentI am glad I found this website, I hope to learn and understand more about this fixable problem
CommentHow did you feel with the clindamycin intervenous drugs? Would you say that if you didn't have the surgeries you wouldn't have needed the second IV with other antibiotics.. When you were on the IV's were you also prescirbed oral antbiotics and was that the only course of treatment that you were administered or was there something else. I hope everything works out with your pregnancies. See the thing is that I also had a tubal pregnancy and miscarriage before my first baby but was lucky to conceive three times after with no problems. One more thing, I would hope that Dr. Toth is experienced enough to find a particular bacteria and treat it specifically. He is an infectious disease specialist if I am not mistaken.
CommentCasey, The Interferon shots took time. I slightly noticed after 6-8 weeks that some of the areas in pain would feel better a couple hours a day....then somedays seemed better than others....then the good days out weighed the bad....then It took a full year till I completely healed because I had been fried as I would call it from other doctors and sick for a little over 2 years before receiving this treatment....As far as rinsing off. I always did that because it helped, but for the gal I spoke of earlier she did the diet for oxalate and rinsed and within 6 months she had everything under control...but she also had been instructed from this clive solomons on when to take her calcium citrate with D during the day and stayed away from chocolate, caffiene, berries , and other foods at the same time...Good Luck to Your Wife and You. M...Endometriosis is best diagnosed with a laproscopy done with a biopsy...That is how I was diagnosed with it....they lasered it off to get rid of it...I refused Depo Provera shots to get rid of the problem. I also had strep-B vaginally with this as well. I was a walking medical nightmare thru this whole thing... God Bless to you all...Im here for Support If anyone needs anything. I wish more recovered people would come on here and donate a word or two to give everyone help.
CommentThe good thing about the surgery was that it got me back to Toth to do the second IV which was the thing that left me pain free. I probably would have live with the somewhat improved state from the clindamyacin IV, if the surgery had not caused bad discharge symptoms. I think that the discharge may have been one type of bacteria and the vulvodynia was another, because the pain was not any worse after the surgery. The bad thing about the surgery was that since it, I cannot conceive, when previously I did almost every time I tried. I think now my tubes are probably scarred in a way that prevents fertilization. A very mixed bag of good fortune and bad. I don't want to take up a lot of time on this site talking about the fertility issues.
CommentOh, I forgot to write that Toth is Infectious Disease and has one of the best labs, and will isolate anaeorobic bacteria, mycoplasma, and chlamydia when others cannot, but you should know that many of the bacteria's he thinks are pathalogical mainstream medicine thinks are just fine. Chlamydia used to be thought of as fine. It is not like you just take a culture put it in a dish and you grow everythin (you probably know this, but I'll continue). See when you go to the doc he takes a culture. The basic cultures are put on various mediums and stuff grows. If you need to check for Chlamydia or gonorhea he has to take a seperate culture that will go on a specific medium, and specifically order that culture. Same with Mycoplasmas, they will never grow unless it is specificaly ordered by the doctor. Anaerobes basically do not grow in most commercial labs, because the culture is taken from the patient, sits around for a while, until the lab picks it up. During this time the anaerobes are dying of. Moreover, Toth lets the cultures grow over a week, the commerical labs wait about two days. Toth's office is at the lab, so the culture is in a anaerobic chamber within a half an hour. Getting back to the specific bacteria...it is still possible that Toth has not discovered the right medium and environment to isolate the vulvodynia bacteria for those of us who seem to have vulva pain caused by bacterial infection. A lot of it is a shot in the dark, and that is why I try to emphasize that you should listen to yourself when it comes to why you think this started and what has seemed to be effective for you, even when doctor's are disagreeing with you.
CommentLeanne and all - When I asked about having your uterus looked at - I had something specific in mind (I should have said that). Even though I am currently doing the interferon shots, my doc wants to check me for something called "Endometritis" (not "Endometriosis") which is an infection of the uterine lining that often involves a heavy growth of beta strep. Anyone been looked at for this????
CommentM., my R.E. wanted to do an andometrial biopsy for progesterone reasons, but at the time I could not stand the thought of a procedure. Although later, during my surgery he did observe my uteris and sai it looked perfect. I do not know whether a biopsy had been done? My guess is no, because the surgery is done in the beginning of the cycle, but there was supposedly no visible inflammation. I know that Toth had done an endometrial biopsy on one of the vulvodynia people from this site at their request. I do not know the result, but I assume it was not significant or he would have mentioned it. I would assume that if there was significant problems with the endometrial lining, you would have bleeding between periods? I had bleeding after sex when I had chlamydia. I actually am thinking aabout getting a biopsy myself, but it should probably be Toth so that he can check for progesterone levels and bacteria, but I doubt I will get up to NYC. Morever, for a fertility test I would have to be there a particular day of my cycle, and it is a pain to time the whole thing. My vulva biopsies always showed inflammation and sclerotic tissue, but the result meant nothing in the end, because I already had said I felt inflammed, raw and stiff. Although, this would be hard to tell about your uteris, and might supply some inteersting info. I firmly believe that the infection, if it is an infection, is all over the reproductive tract. The question is, if they find it is inflammed, what are the chances they willl actually identify the correct bacterium? Let us know what your doc finds from your biopsy.
CommentDee: Not every pharmacy can make up the special lidocaine cream. I had to go to an apothecary or the pharmacy at a hospital. The base of the cream is more like a brown gel substance, instead of the usual white cream. And yes, it is okay to apply it 4 to 6 times a day. It usually numbs for about 2 and a half hours.
CommentHi: I was interested in knowing if Lynn ever posted what type of meds she was placed on for her problem. I believe it was an anit-fungal. She said in her previous post that this cleared up the burning she was having. Lynn, if you are out there please let us know, because you have beaten this syndrome and maybe we could benefit from knowing about the medication All my best. Donna.
CommentHello, I have been to two top Dr.s (well that is what they say) and have had no relief. I'm currently taking Effexor (anti-depressant) . I have good and bad days. I really think that there is no help out there no matter who you see. I think this is something that the Master can only take care of. And I know someday we all will be pain free. I guess he is testing our patience. I have had this for 8 plus yrs.. I'm only 38 and believe it or not I can't wait until I go through my change of life, because that is when I think this will disapear. Good luck all
CommentHello, I have been to two top Dr.s (well that is what they say) and have had no relief. I'm currently taking Effexor (anti-depressant) . I have good and bad days. I really think that there is no help out there no matter who you see. I think this is something that the Master can only take care of. And I know someday we all will be pain free. I guess he is testing our patience. I have had this for 8 plus yrs.. I'm only 38 and believe it or not I can't wait until I go through my change of life, because that is when I think this will disapear. Good luck all
CommentIs this working??
Commentwhere is everybody?
CommentRan out of things to say!!!!
CommentThanks to Sarah, Rebecca and Frank for your thoughts, but unfortunately my partner now says that the problem is not the pain. She is convinced that her lack of libido is becuse "we have lost the spark" I am devasted, she agrees that we both love each other immensely but that it can no longer be sexual. Please are there any ladies out there who can relate to her mindset and broke out of it how did you do it? She wants to "set me free" but I don't want that I want to reignite the passion that was killed by V V.....anyone?
CommentTo Paul: I believe my last comments to you may have offended some ladies because I suggested the possibility of moving on with your life. I'm just a guy who has considered the many facets of this illness and the impact it has on us. The last time you mentioned no sexual contact for quite some time and no attempts on your ladies part to seek treatment. I hate to sound negative but you can't force someone to get help and in this case help may not be available. That seems to be the reality of Vulvodynia. If the pain was truly not the problem then there is intervention in the manner of counciling but both parties need to be willing. I won't go on you sound like a very loving and dedicated man and I wish you success in saving this relationship just don't torture yourself or the lady you love. Best of luck and love.
CommentFor recovery from vulvodynia I would like to highly suggest you see: Weiss, Jerome M MD - Center For Pelvic Pain 1199 Bush St # 650 San Francisco, CA (415) 441-5800 I suffered from vulvodynia for the past 15 years and endured all of the barbaric and useless treatments those of you in the guestbook "speak" of. Dr. Weiss uses physical therapy (outside and INTERNAL as in inside the vagina) along with biofeedback and psychological therapy. I feel the physical therapy (especially internally) was the most important facet. After not having been able to enjoy intercourse or even have intercourse for most of the past 15 years I can now have pain-free intercourse. I still use Estrace but prior to Dr. Weiss it only helped reduce the burning and itching and I still had a lot of pain when we tried intercourse, which wasn't often at all. The following is an oversimplification but what I've gathered is that this ordeal probably started from a long-lasting yeast infection which then caused the vaginal and related muscles to tighten around the nerves which then perpetuated the whole thing, causing more burning and itching which caused more tightening of muscles, etc. Please, even if you're from across the country, call Dr. Weiss's office. It has been a completely validating, life-affirming experience. He does not take any insurance but it has been worth every penny to get this sexual dimension of my married life back. FYI - I went thru anti-yeast, acid, 5FU, Interferon, lots of anti-biotics, and surgery that did not work. Estrace, low-oxalate diet, and citrate made life barely tolerable. I talked to another vulvodynia sufferer in my area who had success from Dr. Weiss and followed through. I've seen him for 5 months with remarkable improvement. I knew about physical therapy as a treatment but it sounded far-fetched to me and I put off looking into it for years. For all of you suffering, PLEASE do not put off looking into this therapy. I have heard that Dr. Weiss is very good at ruling out other conditions that the physical therapy will not help. He performed a very thorough exam on me the first time to determine whether or not his care would be beneficial. He and his staff are truly caring and in it to help as their primary motivation. This same therapy is useful for IC, which was a component of my illness very strongly in the beginning and less later. In fact, he has published a medical Journal paper on it but I don't have the title handy now. In my opinion, it would be worthwhile to fly a great distance to get care from Dr. Weiss to eliminate vulvodynia from your life. When I was still suffering I would read these guestbooks and weep. Now I just want each and every one of you who suffer to get this help and LIVE!!!!!!!!!!!!!!!!!!!!!
CommentTo W: Wonderful news that Dr Weiss has helped you get relief from your symptoms but he cannot help everyone. Vulvodynia caused by yet unknown or undefined things such as bacterial, hormonal, genetic with symptoms including discharge and tearing of the vulva will not be "cured" by biofeedback and physical therapy. If his approach can help ladies with similar onset causes and symptoms as yourself then the trip would certainly be worth it but others should weigh carefully the value of such an investment. I am also saddened by his not accepting insurance, why do the doctors who can supposedly help the most make themselves so inaccessable? What you have described does not sound ground breaking and should be affordable. Best of luck to all of you who may find relief with this method of treatment.
CommentI also wonder why Dr. Weiss doesn't accept medical insurance. Because of that, I wouldn't be able to afford to see him.
CommentPaul, yes I can relate to your wife. She is depressed. Dealing with pain every day with no hope in sight is depressing. She has lost her libido, probably first because she has pain in her sexual organ, second as a defense mechanism, and third because she is sad. She is mourning her identity as a sexual woman, her expectations of an intimate partnership, probably feeling like a big fat failure. The expectations she puts on herself and the guilt is probably overwhelming for her. Most woman are raised and socialized to be nurturing and giving, and she cannot give you a basic part of an adult relationship. In her own head she might be thinking that she is a burden, and she does not want to feel that way, so the easiest thing is to let you go. She is probably sad enough about life that she feels like the loss of you would just be another terrible painful thing, but she is in pain anyway and it would be less complicated. I think the truth is she is REALLY NEEDING your reassurance right now. She NEEDS to know that you still find her sexy and beautiful, that the food she cooks is delicious, that you love being with her, that you behave similar to when you were dating, etc. (i'm not sayiing that you do not do these things, but I am speaking from my own relationship, and ASSUMING a lot about yours. I hope I do not offend you). Hopefully, you can give her back some of what vulvodynia is robbing from her psychologically right now, and maybe she will want to feel physically close to you. Obviously, you have been extremely understanding in the past, and sincerely want her to be well and happy, but you have also voiced your frustartion at the moment, and I am sure she is aware of your patients running thin right now, which probably ads to her feeling unworthy. This is so complicated because I do not think you should just sit back and wait forever. Not for your sake or hers. If this was your daughter, what would you do? Wouldn't you start setting up appointments, calling around, reading up, and going to doctors with her, helping her feel powerful against the medical establishment? I have no way of knowing if you have done this already, or if she is the kind of woman that would appreciate this (again assuming a lot) but maybe she cannot mentally muster the stregnth to try to get treatment, maybe she needs you to do a lot of the work, and she is not asking? If you are going to leave her if things do not change soon, then you must think of a way to change the normal routine when it comes to this, you must act differently, and then maybe she will. Sounds like you have nothing to lose? Not that you should become mean or angry, or the antithesis of what you have been, but simply try to handle things differently. Just some ideas, hope they are helpful.
CommentFirstly to Paul- I am brand new to this forum but I red what you wrote about your wife. I had a similar thing in my relationship. I was a virgin when I met my husband. I had already had symptoms with pain using tampons, etc, but I had wrongly assumed they were due to my virginity. I was honest about the pain with him when it seemed to never stop. At first I thought after time, but it never improved. Then finally, I was depressed, and felt like I was holding him back from experiencing a normal sex life. I spent literally years trying to hide the fact I was in pain when the Dr's were telling me there was no physical reason for the pain. I thought I was frigid, and tried therapy. Eventually I tried to make him leave rather than suffer with guilt along with the rest of my own pain and problems. He was patient,kind, loving, understanding, and I felt far more deserving than what I could possibly give him with my sexual problems. What finally helped was that he had a short bout with performance anxiety. I think we really connected on the idea that we are not always in control of our bodies reactions, reguardless of the level of desire. We also went for about a year without any vaginal intercourse. Opting instead to explore ways of giving and receiving non-painful sexual pleasure. If nothing else, it did a tremendous amount of good in improving our comunication and improving the amount of intimacy in our realtionship. It wasn't "my problem"....it is ours. SECONDLY- to everyone else....I couldn't be happier to find you. I have not yet been diagnosed as having vulvodynia because I have had a bad run with doctors, but I am sure I will bw when I find an educated OB/GYN. I have suffered as long as I can remember from pain and irritation and have always been made to feel like a pat on the head should fix it. Doing my own research I have found that certain products (soaps, sanitary products,etc) have helped considerably with the irritation but not with the pain. I actaully feel like I have ridges (like rings) inside the vagina that are painful to be passed over during intercourse. Does anyone know if this is in fact a problem with the muscle? I have had absolutely nothing helpful ever from a gynecologist and I have seen now over 6 gynecologists and 2 MDs about this. I am hopeful though because I have an appointment in 2 months with a new DR I have heard good things about.
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CommentHello, Because I do not have vaginal pain but instead constant stinging, burning and the feeling of electric shocks in the pubic area, (labia, and any where there is pubic hair) I have not sought physical therapy. I have this strong feeling that if I could only calm the nerve endings I would be fine. Numbing them with EMLA works pretty well. Does anyone else experience these symptoms and have you had any physical therapy that worked? I have tried all drugs. I would travel anywhere if necessary. Thanks for responding. Jean
CommentAbout Doctors and Insurance: The answer to why some don't accept is simple - insurance companies are in business to make money and to pay as little out to doctors and consumers as possible. Doctors don't have to accept insurance, it is really only a courtesy. For example - I saw Dr. Toth in NYC - just for an office visit and cultures, not an IV. His bill was near $600.00 and he does not accept insurance. My insurance - Blue Cross/Blue Sheild Personal Choice (supposedly one of the "good" ones) reimbursed me $12 and change for the visit. Imagine if he accepted my insurance and got paid $12 for all the work and tests he did for me - he'd be out of business!! Complain to your insurance companies and your gov't officials - not your doctors - it's not their fault. One more thing - I am currently paying for interferon out of pocket because it's not covered by my prescription plan. $90.99 a week for 8 weeks - because my employer decided not to include "high-end injectables" in our coverage. Nice, huh?!!!
CommentHi, I'm 33. After trying over the counter yeast infection stuff, diflucan, flagyl, multiple STD tests, an antifungal cortisteroid, I got an appointment with Dr. Marquardt in Brookline, MA and was diagnosed with vulvar vestibulitis. He prescribed Desonide Oint. .05%. This was on Friday. Since then I have been reading Web information and getting increasingly depressed and freaked out. I'm in Gloucester, MA. Any suggestions for books, references, support groups, docs, etc. appreciated.
CommentWelcome B: Dont get discouraged yet. Everybody's case is different so dont lose faith. The Vulvar Pain Foundation is a great place to start (vulvarpainfoundation.org). You should join. Also, you may benefit from a suuport group like the one I joined not too long ago. Her name is Karen Vandell, and her email is kpvandell@erols.com. She is located in Somerville, Ma. I plan on going this saturday at 2:00. It helps a lot to talk to others who know exactly what you are going through. If you cant attend, she usually holds a meeting the last Saturday of each month, and she plans on having her second partners' meeting in August, which is great since I missed the last one. Everyone who goes is wonderful, and she is very good about answering her emails. Drop her a line, and good luck, laurel
CommentJean, I was experiencing tingling around the hair area too. i still have VV with burning and pain but the tingling is gone and i'm pretty sure it comes from the physical therapy i've been doing. it's internal pelvic floor muscle therapy. check it out. if you're in So. Cal. i can give you my phys. therapists name.
CommentJust an observation: Note: this is just a vent: I keep seeing this fact thrown around on vulvodynia/ vestibulitis pages: "As much as 15% of women suffer from this disease." That number is on virtually every vulvodynia website. From what I can tell, the only place this "fact" comes from is an Oregon gynecologist who noted that 15% of the people who came into her office over 6 months had vulvodynia. The fact that this anecdote is cited by doctors and even the National Vulvodynia Association just goes to show how little attention this condition receives and how poor the research is. An Oregon gynecologist's observations about the people who come into her office in a 6 month period is hardly a scientific sample, and, honestly, probably grossly overrates the percentage of women with vulvodynia. Obviously, people going into a gynecologist's office are going to be more likely to have a gynecological problem than the general population, and a doctor who knows what vulvodynia IS is going to be more likely to have vulvodynia patients come see her. (Because, as we all know, it's difficult to even find someone who knows the problem exists.) It's embarrassing that people who pride themselves on the scientific method keep throwing that figure around as fact without even inquiring about its accuracy. Certainly, a lot of women suffer from this, and many more than I ever thought; this guestbook is evidence. But, 1 in 7?! If that were the case, virtually everyone with vulvodynia would know someone else with vulvodynia. Even more frightening, it goes to show how little doctors know about this, and how large a grain a salt should be taken with their opinions on this disease. If they are so haphazard with that fact, which other ones are they just tossing around carelessly?
CommentCareful Casey your observations may lead you to the conclusion that no doctor really knows what the cause or proper treatment is for Vulvodynia. Some find this to be depressing, I think the truth will set us free and lead us to the realization that much needs to be done. Public awareness, acceptance and conversation in an adult progressive manner. You write as an intelligent person hopefully you will make some meaningful contributions. Keep up the interest and keep digging the answers are out there somewhere.........
CommentMy name is Lindsey, I am 18 and I have been diagnosed with Vulvodynia. I have been to countless doctors and all of them send me away saying that i create my pain and i need to teach my self to relax. My last doctor diagnosed me and then told me to get on the internet and find a specialist in the area. I live in Austin, TX. and i am in desperat need of help. This has been going on for two years and i want to get rid of it. I am willing to drive or fly to get some help. Currently I am taking an anti-depresant that my doctor gave me before i left. Please help me, e-mail me if you know of a specialist in my area. I am happy to know that there are other women fighting this, we all need someone. i know i do. thank you and best wishes!
CommentI was wondering if anal burning goes along with the vulva burning as I have both.
CommentCasey has some very good points! There is a lot of unscientific stuff flying around about vulvodynia. Maybe 15% isright, maybe it is way off. Who knows what this doctor in Oregon used as parameters in diagnosing vulvodynia? It is not a random sample, but a specific sample of GYN patients. It is like when Cosmo takes a quiz on sexual habits. Their readers are much more likely to be liberal about sex than good housekeeping. Cosmo can not generalize about women in America, only Cosmo readers. Having said that, the thing that cured me was not a scientifically proven method of treating vulvodynia, so thank goodness for doctors that adventure outside of the scientific medical box. Not that it is o.k. to just try any medication or procedure, there must be a certain amount of logic and medical science behind prescribing a medication or remedy, but sometimes it has not been proven yet. I also think that what Casey has says can wake us up to the fact that doctors DON'T KNOW most of the time what is really wrong with the vulvodynia patients. We want them to just know the cure, but it seems it is rarely that easy. It is the lack of knowledge of science and nature that hurts us, and bad science hurts us just as much as no science.
CommentI have had vulvadynia for over 5 years. Recently I have experienced some wonderful pain free days. I have adhered to the Lo Ox Diet and take NAG along with Effexor XR and Ativan (for bad flare ups) I was really thinking that I had just about recovered, when I have experienced a real set back. I had felt so good that I began having a normal diet of foods that I love. Salads, Coffee, beans, chocolate, lots of soda etc... I got away with not feeling too bad for a while, but it has caught up with me. For one week now, I have been burning with internal burning and burning in the labia. It is terribly intense and it reminds me of how I used to be. I pray that I will start feeling better soon. I am feeling better right now, but who knows what tomorrow may bring. Living with intense pain is awful. I go through the motions of my everyday life and no one would know that I'm hurting, but day after day wears me down. I pray that any woman that is living with this kind of pain will try the low ox diet and drink lots of water and stick with it. I can really tell the difference when I eat the wrong things. Anyone ever experience anything like this? How long did it take for the buring to subside? Thank you
CommentI have suffered with vulvodynia for about 10 years now and have contributed to the Guestbooks on and off for a number of years. The last time I wrote was about 12 months ago when I started getting Active Release Treatment from my chiropractor (I had tried all the creams, diets, hypnotherapy etc without long term results). The ART really helped and so long as I had a session once a month, it seem to keep the pain in check. For the past 10 years I have also been getting a rash every three to four months. Years ago it would occur down both my shins, on my stomach and rib cage, and on my shoulder blades. For years I tried all the different creams and saw a skin specialist and allergy specialist who couldn't work out what was causing it. At the beginning of this year, I got really annoyed at this rash keep coming back and so I went to see another allergy specialist to see if after a few years I might be lucky and find what was causing it. All the usual allergy tests were done and extensive blood tests, but all that came out was that one part of my immune system was really, really low. The doctor suddenly thought I may have shingles (the adult form of chickenpox) as my rash was in the classic area of one side of my stomach. After telling him about all my other symptoms (ie. vulvodynia), he felt that as the herpes virus lives in the nervous system it could be the cause of the pain I was feeling throughout my genito-femoral nerve. I had never linked my rash and the vulvodynia symptoms to being from the same cause, but after doing some research on the Internet about shingles, I can now see the connection. I am nearly at the end of a 30 day course of Zovirax tablets and the rash is 95% gone and the pain I get before and after the rash, has disappeared. Hopefully I may have found the cause of the pain. Even though I will get more outbreaks of the rash (like coldsores, once you have the virus, it will never disappear), at least I know I can get the tablets right away and that should lessen the severity and length of all the symptoms. Apparently it is quite rare to get recurrent shingles, but I thought if any of you may also be getting a rash, it might be worth discussing it with your doctor. Take care all. Di
CommentLindsey-Please join the NVA...They will send you a whole list of doctors in your area with the membership. Plus you receive really good information every month in the mail....Even if you call them, they will refer you to someone if you cannot join the membership. Rachel- It is not unusual to have a flare-up. Once you have gone for a while pain free you can get a flare-up...Then you will re-gain control of the situation and then the flare-ups get less and less over the years. I was initially a vulvadynia patient 9 years ago...My first 3 years were the worst...Then I had a flare up once in 5 years..It lasted one month..I took elavil during that time...Good Luck.. Dont freak out...I know I freaked out....It makes it worse...You'll be fine.... Ladies in General....Please stay away from the surgerys for this disease. I read a lot about this in the guestbook...A lot of women that went thru the clinic I did got better and then it came back on again...Once you elect surgery...A lot of the other standard treatments cannot be used after that....So try them first....Use surgury as a last resort...Believe me I wanted the fastest cure first as well...Good Luck....
CommentCasey: Keep this in mind - 15% is not a large number to start with. If anyone comes on this site, reads what you wrote, then decides that, if it's actually less than 15% that hardly amounts to anyone - then why should the medical industry work so hard to try and help?? Commenting that this condition is even rarer than thought by the current statistics won't push to get any of us, including your loved one, any cure. There are some studies (I can't quote them here, but they are available on the net) that show an estimated 40% of women who visit OBGYN offices suffer from some form of "Vulvodynia" at some point in their lifetime. Remember the word, by many doctor's definition, only means "vulvar pain or discomfort that lasts for more than three months." Undercutting 15% will only make more of the medical community turn their backs on us - why should they try to help if there is hardly anyone with the problem??
Commentv.v can cause rectal burning and vice versa. Get a complete rectal exam to see if their is inflammation of the rectum or colon (proctitis, colitis). Getting that treated alone may help the v.v.
CommentLet me clarify: All I'm saying is that the fact that this anecdote got passed around by doctors and published on medical websites as fact says something about the level of knowledge from the medical profession about vulvodynia. I'm not saying that doctors are worthless, just that very little is known about vulvodynia, including the most simple statistic, how prevalent it is. To M: I realize that it is good for publicity to say that 15% of women have vulvodynia, but if that's not true, all it does is undercut our arguments. No researchers, drug companies, etc. are going to see a website saying that 15% of women have x disease, and, without checking that number out for themselves, toss a few million dollars at research on it. They're going to see for themselves what the market would be. If it's significantly less, what do you think that does to the credibility of the doctors who can tell them something about it? But, in the grand scheme of things, this is a very minor point, and it's not going to get anybody cured or improve anyone's quality of life. I was just doing some web research and kept seeing that, and had to say something.
Comment15% seems like a big number to me. I think it is something like 20% of the U.S. population has diabetes, and everyone knows about that, and seems to be worthwhile researching. I agree that the docs that deal with this must be credible to be taken seriously. Breast cancer is about 12%. Hell, breast cancer gets tons of attention and it is heart disease that affects just over 30% of the female population! Sometimes the attention a disease gets is not logical. It needs to get attention from a famous person...like Christopher Reeves with spinal cord injury or Liz taylor with AIDS. There has to be famous people affected with this?! It would be nice if they would speak out.
CommentTo Jennifer: I agree that a celebrity spokesperson would help greatly. Unfortunately celebs don't often risk their marketability. Richard Roundtree( Shaft) had breast cancer and did not speak up for quite some time. Then there are those who fight for their cause. Probably are several well known ladies suffering but for one reason or another will not go public. Right here there are ladies who suffer terribly but cannot speak openly of their pain. Society has got to open up to this topic, we can start with loved one and close friends. I'm more of a blabber mouth for a guy if I did suffer from sexual disfunction I'd probably blad about that too. I respect the personal choices of all who read and post here I just feel the word has to get out..
CommentI agree 100% Frank. Unfortunately for celebraties their career depends upon how the public perceives them. If Pamela Lee had vulvodynia, it would "tarnish" her on screen personality. Usually the celebrities that come forward about things are either related to someone who was affected or the disease/injury is so obvious to the public eye you might as well talk about it. But, things can change. Previously actresses were very unlikely to say they had a breast removed, but now they feel more comfortable and people do not cast a judgement on breast cancer...I believe because it is talked about so much. This argument applies to everything, health conditions, lifestyle, mental illness. I personally know three other people with vulvodynia, before I ever found this sight, and the only reason I found out they suffered was because I confided in them or a friend of theirs that referred me to them.
CommentPamela Lee already had Hepititis C - can we get back to the point here??
CommentHep C goes along with her image, it is a negative circumstance but it just shows she is part of or near to drugs and sex (not saying that everyone with hep c is permiscuous or doing drugs). With vulvodynia she cannot enjoy sex, and her whole image for men is that she wants to screw them and that she craves sex and that she enjoys every little thing a man would want to do sexually! But back to the subject.
CommentHave any ladies used Estrace cream topically during pregnancy? I read that somewhere that it can cause birth defects, but then I also read that topical application allows only a minimal amt. of the estrogen to be absorbed into the skin and bloodstream. Any thoughts or experiences?
CommentQuestion for the group. I have been experience extreme pain and some swelling laterally down the left side of my vagina. The pain is between the left labia minora and labia majora and runs from the left side of my clitores to the bottom of my vagina. It kills to sit--any pressure on this area kills me. I also have some swelling there. Anyone else experiece this or know what it is. My dr. thinks I have nerve damage but I keep wondering if this is something else
CommentTo Elizabeth: I know you asked this questions of the Ladies but I just couldn't helped giving my thoughts. I have learned that even concerning things like this doctors disagree. Several years ago my wife and I asked her gyn for a prescription for topical testosterone cream a doctor Berman on Oprah said it helped libido. I asked the gyn if it was systemic or not and he fliped back and forth on the answer. Several months ago we saw an endocrinologist, my wife's hormone levels appeared to be in normal ranges and when we told him of the repeated use of Estrace he seemed concerned about how it had affected me. Bottom line your skin absorbs everything so when they say it is non systemic and if applied locally stays in that area, beware. Go on other sites, ask other doctors, be your own best reference. There is too much misinformation out there and if a healthy pregnancy is at risk don't stop asking questions and getting answers. Best of luck and sorry for butting in.
CommentThank you, Frank, for your response (you're not butting in! you're welcome here!). I agree with what you said, and I'm doing lots of research about Estrace (by the way I'm not pregnant yet). Nothing is more important to me than a healthy pregnancy, but I don't want to be ignorant and end up being miserable for 9 months without the Estrace and then only to find out it was perfectly safe and non-systemic. Anyway, I'll be my own reference, like you said. You've encouraged us all so much on this board, and I want to say a big THANK YOU!
CommentI have a 75 year old aunt suffering and her husband my uncle is her carer. He wonders if there is a support group in Australia
CommentI have a 75 year old aunt suffering and her husband my uncle is her carer. He wonders if there is a support group in Australia
CommentTo Australia: I found this on another Vulvodynia web site: GAIN is not just about gyn cancers but also pre cancerous conditions. Gynaecological Awareness Information Network Kath Mazzella Ph: 08 9378 3307 Australia E-mail: mazzella@bigpond.com - It might not be exactly what you want, but it might be good to contact her for a start. Also - contact the NVA. Their newsletter is distributed in Australia and they could probably give you some good advice. Good luck!
CommentI have been diagnosed with vulvodynia 12 years ago. I have read alot in the guestbook and I have yet to come across anyone suffering from a more localized pain. My pain is very intense in the clitoral area and not so much in the vaginal opening. I am starting to wonder if I might have something else. The pain is very "nervy" and feels like someone is poking the area with razor blades. It happens suddenly with sometimes no warnings. I also suffer from lower back pain as well. I have had steroid injections and biposies of the clitoral area. I have been to 30 plus doctors and have been told I was nuts. I am married for 10 years and needless to say, sex does not happen often enough. This pain is so intense sometimes I want to just die. I have two small children that I need to be able to take care of. I want to be healthy. Does anyone know of the pain being localized like that or have any other suggetions. Please feel free to e-mail me. This is my first posting and I pray for a cure someday soon. Lisa
CommentI'm not sure which came first, the chicken or the egg, but half way through my first pregnancy I developed a UTI - pretty common from what I had read. The problem was that the report came back stating the type of infection I had could only be treated with and antibiotic that was not safe to use during pregnancy. So for almost the last 20 weeks of my pregnancy I was on antibiotics that weren't helping. During this time I was so uncomfortable because of the UTI that my husband and I didn't have sex. I'm not sure if I had VV at this point maybe steming from the infection or the long term use of antibiotics. After the birth of our son I could not have sex because of the extreme pain. Maybe the VV was caused after the vaginal birth. I suffered for years trying all of the things you mention in your comments. Finally I added Pamelar (generic Nortriptyline 50 mg. ) to other things I had taken and in 3 weeks I was 99.9% cured. I was taking Elival (generic Amitriptyline 100 mg.), acidophalus, calcium citrate. For about two months our sex life was wonderful and I would cry not from the pain but from the lack of pain. I thanked God. But recently this past 1-2 months I have been experiencing some pain again. I'm not sure if my body got used to the new medication and I need to get a stronger dose. I will contact my doctor on Monday. The frustrating thing is my husband and I would like to have another child (our son is 3 years) but it is not save to get pregnant on these medications and I'm afraid if we start to wean off of them the sex will become painful again. Or maybe it will go back to being so painful we won't be able to have sex which obviously wouldn't help in trying to conceive. I just wanted to tell you which combinations of drugs worked for me even if it was only for a short time. We are still blessed with one healthy child and blessed to have each other along with the re-connection of our sex life even if that was short lived too.
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Commenti haad gone in for a biopsy and saw Dr. Stewart, not the rn, and she said there was nothing to biopsy! She didn't do one and said i have vulvodynia. I have been on nortriptyline for about a week now and i think iam feeling better, she also gave me ultrabate to use for 2 weeks, and but me back on a high estrogen bc pill, since i told her that it hurts the least right in the middle of my cycle. i have an appt with Dr. Glazer the end of the week and i cant wait to starrt bioffedback. best to all
CommentPam-& any others suffering a flare-up...-When we get the correct combination which leaves us pain free it is not unusual to have a flare up as I call it off and on during the first year the correct combination worked. I went thru the same thing. I felt great then would have a flare up of the condition. It would never be the same as the first horrific experience when it first came on...Then the flare ups become less and less. After one year when I would say i healed. I did have one more flare up after a 5 year spread of no pain...Please keep the faith....Leanne
CommentHas anyone taken Serafem? if so, please let me know how it was. the estrace alone isn't working so well. Now my doc wants me to take estrace, serafem and kenalog cream. any ideas? he says the serafem is much better than the elavil.
CommentThis is my first time posting. I read through most of one of the articles - a little tough since it's medical - but found the results with the EMG a bit encouraging. I noticed pain during intercourse over a year ago and thought it was "in my head", that I wasn't relaxed enough, distracted etc. I finally got the guts to see my doctor and then a gynaecologist who confirmed that I have vestibulitis and that vaginitis, which I also have, frequently accompanies it. For the vaginitis, I was given a presciption called flag--- sorry, can't remember the name of it. But they are ovules that I insert into my vagina at night time for 10 nights. It came back and I was again prescribed the ovules. I'm experiencing itching again outside of my vagina, on my vulva and sometimes my clitoris hurts, too. I don't want to go back to the ovules since they don't seem to work plus it's $30 for each prescription. My gyn. told me that vaginitis tends to recur more frequently when the medication doesn't work. In regards to the vestibulitis which I just had checked out a few weeks ago, it was very painful when the gyn. poked around in me with what looked like a long Q-tip. My gyn. prescribed a cream called Premarin to be 1-2 times per week. I insert 1 gr. of this cream into my vagina and also rub a bit on my clitoris. My clitoris, she says, is quite small and looks like it's at a teenager's stage of development. The cream should open it up. She told me if no changes occur in 2 months, then book another appointment with her. She also told me that vestibulitis has a very low success rate of being fully treated and that different things work for different women. This has been quite disheartening. The last time I tried intercourse with my boyfriend a few months ago, it was terribly painful, more painful than a year ago. The vestibulitis is in the first 1" of my vagina, beyond that there's no pain. I will continue to research vestibulitis and vaginitis but really, I feel like going to a medical intuitive (someone like Carolyn Myss who has written books on the connection between body-mind-soul and actually "sees" people's medical problems simply by looking at them and "reading" their energy. She can also provide people with what the source of the physical manifestation is which is always a spiritual dilemma which the person needs to heal.) I would like to take a holistic approach to this whole matter and I'm hoping to see some success stories of women who have cured these conditions.
CommentHow old are you Alice? How long have you been sexually active? If you have been having sex for years painlessly and all of a sudden someone tells you your clit is small, and that might be a problem, I think that is crap. Flagyl is what you used for what the doc thought was BV, did it help? Premerin is hormone treatment.
CommentI can't wait to spent more time in this website. I am a very frustrated 40 year old, who has suffered for about 3-4 years with symptoms. After all has failed, I had a vulvarvestibulectomy and have to say it has helped with the everyday pain I used to have. However, I still have flare ups and get very discouraged. I use temovate and estrace daily. I am trying to get by without the zoloft I was on. I have a very hard time during my period and for a long time after as I get so irritated from the pads. I also feel very alone as I do not feel comfortable with my doctor. Any one want to talk I'm happy to.
CommentAnn, any possibility that your period is irritating, and you would be better off with tampons to keep the blood off of your vulva?
CommentBec - about the lidocaine, My doctor thought it would really help me, but when I applied it, the burning was unbearable. I thought my entire vulva was on fire. What is the component in the commercially available product that the compounding pharmacy can leave out?
CommentTo All: Reading the last post reminded me of my trip today to a local chain pharmacy with my family. We are going on vacation and went to pick up some various items. I noticed a display shelf near the front of the store with several different items, among them in plain site was a product offering hightened sensitivity and sexual response for Women! What was the wonder ingredient? Well mostly water and preservatives and to help cure insensitivity...caprylic acid(spelling) it is what makes pepper hot. They put an irritant in this stuff to make Women more sensitive! Unfortunately there will be more ladies suffering with painful symptoms thanks to products like this. I noticed many skin applied cremes, hormone, anti-itching, etc. contain alcohol and other very irritating ingredients. The pain of applying these things to raw skin must be terrible. Best of luck .
Commenti am very very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very veryvery very very thin
CommentFrank- I would just like to say to you that women whom are in severe pain.....The last thing they would look for is any product which would bring "Heightened Sensitivity"...A woman with vulvadynia could take 100 spanish flys and it wouldnt help because your in so much pain that sex is absolutely the last thing on your mind....Are you really married with a wife with this condition???????????And why would you be looking for a sexual dysfunction medication for her anyway????????????
CommentHello Please can anyone help me! I live in England and have been suffering with vulvodynia for 8 years now, iam now 23 years of age.At first doctors thought i just had yeast infections and gave me many creams and antibiotics.They took the thrush away but i was always left with extreme inflamation that never went away and unbearable pain and discharge.I can not be touched at all in that erea, even having a swab is torture.At the time i had a boyfriend and i became increasingly frustrated,as a normal relationship was impossible.He finaly left me after 4 years.In this time i had seen many gynecologists who did not know what was wrong with me,or what was causing the constant inflamation.I have had biopsys,allergy tests,pain blocking tablets,antibiotics,creams,all to no avail.Then about 5 years ago i started having problems with my bladder, frequency to go and enough urine as though i had been waiting for hours,which i had not.I need to go about every 15-30mins,i also wake up about 4 times in the night to go.I have pains in my back and my sides due to this and i was tested for kidney stones which i did not have.Iam not seeing any gynecologists now because they say they do not know where i can go to get any help and they do not know a lot about this illness.Iam now in the urinery department who think as well as my diagnosed vulvodynia i may have Interstial cystitis. Iam waiting to have the camera to have another look.With all this going on for all this time my my emotional health has suffered.Iam currently on the sick i can not work,i have had only two boyfriends in my life,i have not got a good social life or many friends because i just dont feel "normal" and iam sensitive to other young people who are living normal lives.This condition effects women more that doctors sometimes give credit for.I have had counciling to help deal with it and am feeling a lot better.But iam feeling like there is nowhere left to seek help and i want to start living my life. Iam adding my story to this page because i think this site is exellent.And to ask if there is any one who can help with suggestions of treatment they have found to help eg.Natural remedies,diets,anything you think suitable.Also to ask if anyone knows of any practices in England that deal with vulvodynia.I would be most thankful and i have given my email address to help with contacting me.Thankyou. lisa x
CommentWow talk about being misunderstood, yes I am married and my wife does suffer with tearing and some of the other symptoms, no I was not "looking" for a sexual stimulant for her. I am observant of my surroundings and that product was in plain sight of myself and my children. I was disturbed at how any company could put such a product into the market place and possibly cause many Women pain and harm. I posted the information to point out how unsuspecting Women who do not suffer as you do could end up having a problem. I love my wife and daughters I'm concerned about their future I wish more was being done to bring this illness out into the public where it would get the attention it deserves. I assume the person who questioned my motives is a Woman in great pain who has been emotionally hurt by a Man. I don't expect to sway your impression of me because you don't know me but there are Men who are not cruel and who could be a great asset. We will never meet, you will never know the kind of guy I am but that's not important what is important is sharing experiences, words of encouragement and working together in whatever way possible to bring about meaningful treatment.
CommentHey - does anyone here remember when these guestbooks used to be for exchanging important information and trying to help ourselves and other women with VULOVDYNIA - rather than a site for blowing smoke and preaching to the choir?????? We used to be able to come here and ask questions of women who are suffering the same symptoms and find out what they have tried so far to help themselves. When I log onto this site it takes about 20 minutes to load up on my old computer, but I don't want to miss anything important that I may use to help myself. After not looking here for a while, today I found Pamela Anderson, a thin guy, and more rhetoric from Frank that is not helpful at all. I think I'm done here - it's become a waste of time, and that's a shame. Where did all the WOMEN go who were always posting information about the doctors they have seen and the medications they have tried. That was potentially the most helpful information here. Too bad . . .
CommentReesa wrote a post asking what the burning ingredient in Lidocaine was. That seemed like a valid question! No one else answered it so I gave it a try, maybe I wrote too much but it was in response to a question. The only reason I wrote again was to try and put to rest the post which kind of attacked my motives.
CommentFrank: I can't speak for Reesa but I see the point in the above posts. If you were really responding to her question, it got lost in the story. If I were Reesa, the response I would have found helpful would have gone like this, "The burning ingredient in Lidocaine is ________" (I don't know what it is), and "yes/no a compounding pharmacy can/cannot do that." Wife or no wife, it feels like you don't really get it. I too would like to get back to the point. I've never looked into it, but I know there is on-line access to chat groups here. Has anyone done it? Is anyone interested? If so please post and let's stop waisting space here. This junk is really taking advantage of the opportunity Dr. Glazer has given us to have a place to exchange information.
CommentOn 7/2 Reesa asked what the ingredient in Lidocaine was that was causing her burning. No one else responded so I gave it a try. What is not useful about that? What did someone else not give that lady an answer? The only reason I responded to that other post was that it seemed to be a personal attack. You are right it does take a long time to read the site but I'm not trying to waste anyones time. The skinny post was from disturbed individual and of course has no place here. Do you have anything constructive to offer in place? I would much rather read informative posts than contribute or be insulted. Try to be positive, that's what we need here and get over the guy bashing!!
CommentM.... I would be very interested in the on line chat but im really not sure how to do that....Any ideas... You are also very correct that this site has gotton off the beat and track for what it is meant to be....I for one do not want to waste space here just to hear myself talk .... To the lady from England. There is an organization called the NVA (National Vulvadynia Association) Im not positive, but maybe they can refer you to a specialist in England. They do here for the woman in the United States. To the frustrated ladies.- Please do not give up on this site....lets get together and post our thoughts and what has worked. Or what hasnt. Especially for our newcomers, We dont want to chase them away.... Ok---Ill start. I had vulvadynia for 3 years. I went to Robert wood Johnson University Hospital In New Brunswick New Jersey. I had been on the yeast diet, oxalate diet, every creame and medication known to man and did not get any better until I used a Dr. Bohdan Mahlic whom gave me interferon treatments with elavil (10 milligrams a day). It took a full year to heal and I had to stay away from all chemicals and used clear dye free shampoo, soaps, etc. I always washed with water after using the bathroom to stay very clean.. I have a very rare mild flare up once in a deep blue moon. Different methods work for different people. Please join the nva for news letters and different methods and just take one step at a time....Good Luck...Any questions?????????
CommentI hope that Dr. Glazer will step in and tell us if the direction of this guestbook taken a wrong turn. I'm very concerned that it has become more destructive than constructive.
CommentYou know, sometimes Frank gets on my nerves too, but I welcomed his comment about what he saw in the store. I agree with the fact that there are so many chemicals out there for different things for women. I get so angry when I see the commercials for yeast creams and they are badmouthing diflucan. If only the doctor had given my diflucan when I requeated an oral medication for my yeast infection,instead of a cream, I probably wouldn't have vulvodynia right now. I wish there would be more awareness of how these chemicals can do permanent damage.
CommentI have vulvodynia and I also have extremely sensitive and sun sensitive skin on my face. I got a sunburn on my lips last summer and they still have not healed properly. Does anybody else have this problem?
CommentRe. Lidocaine burning There was an earlier discussion about this, on this page. Here are Bec's postings: I had to have a special cream made for me because the usual Lidocaine cream had a base that burned me. Not every pharmacy can make up the special lidocaine cream. I had to go to an apothecary or the pharmacy at a hospital. The base of the cream is more like a brown gel substance, instead of the usual white cream. And yes, it is okay to apply it 4 to 6 times a day. It usually numbs for about 2 and a half hours
CommentHi there--I just found this page, and the one thing I've noticed is that there is very little info about the surgery for vestibulitis (vestibulectomy). I just had one 2 weeks ago. I don't have any "results" yet, but I figured I'd share my experience for anyone considering surgery. A lot of people cringe at the word, and I figure information makes things less scarey. -- First of all, I'm 28, married 5 years, and I think the pain started somewhere back with the breaking of my hymen when I first had sex (marriage), because I bled several times. I think I've had some pain since that time, though I only went to a gynecologist this year because (a) it only hurt at intercourse, and I could still have sex; (b) I'm lazy. Anyway, I was lucky enough to hit the right doctor on the first try. (I live in Quebec, Canada.) He immediately did a Q-Tip test, and when I told him I didn't think it was psychological, he believed me right away. My pain was very localized in one spot--definitely not one of the more severe or complicated cases I've read of here! He prescribed Lotriderm (antifungal cortizone cream), which I used for a few months. It didn't do a thing for me. His next suggestion was surgery. I now see that a lot of people see this as a super-last resort, but my area of irritation is quite small, so I didn't think it could hurt. He is also going to refer me to a specialist if the surgery didn't work. Anyway, I'm not saying women should run out and get surgery--I don't even know if mine worked. This is just FYI. ---- SURGERY: (First of all, let me add that I was very open about both my condition and my surgery with many friends. It helps when you can talk about it, believe me. )Paid for by health care, in Canada. 15 minute procedure. I went to the hospital the week before for a blood test. I brought a urine sample to test for pregnancy on the morning of the operation. My husband and best friend sat around with me; I had my blood pressure taken a million times; I got to wear one of those dumb blue nightgowns. When they CAME for me, I was nervous, but I was left in the hallway for 15 minutes, so I was able to calm myself down (pray etc.) I was wheeled into a COLD operating room, filled with super nice, majorly friendly staff. They threw heated blankets on me; attached one arm to the blood pressure machine; attached the other to the IV which contained a relaxant; cold suction cups were attached to my upper chest, and something cold on my thigh (??) Using the blanket, my view was blocked, and they put my feet in stirrups. My doctor gave me local anasthetic via needle, and I swear, it was exactly like a dentist needle. A small sharp pain, but nothing you can't handle. He rubbed iodine on the area (COLD); made the incision, which I didn't feel at all; then cauterized the blood vessels a bit, which was HOT, but not painful. Then he stitched me up with dissolving stitches, and ran off to deliver a baby. The worst part of the surgery was being cold from the ribs downwards, which made my un-fit legs shake in the stirrups. I didn't like shaking... afraid it would throw off my doctor! Trying not to shake was the worst part of the whole thing. This posting is long, so for my recovery... see my next exciting posting!
CommentMABEL'S RECOVERY! -- I was wheeled back so soon, my husband and friend hadn't returned from the cafeteria yet. The nurse told me to ask for a pain killer when I needed it. I read. My doctor eventually came to visit, told me no sex for three weeks, to see him in two weeks; he prescribed Empreset, but told me to get off it quickly because it constipates--to take Advil or Tylenol thereafter. I was told to do the sitz bath in sea salt and water 3 times day for about a week (I forgot how long the nurse said, actually!!), and she gave me a little plastic bottle to rinse myself off after going to the bathroom. No antibiotics. An hour later I was allowed to eat (forgot to mention--had to fast midnight onwards--that was the OTHER worst part of the surgery!!!), and then go home. Walking was better than sitting; for sitting, I sat more on one thigh or the other. I took the Empreset 1.5 days, then switched to Advil which worked great. The pain for the first five days was a burning sensation (I was given Lydocaine, which also burned when applied... but that burning stopped after five minutes--anyway, I didn't use it much). I was told I could return to normal activities after one day of rest. I went back to work, bringing with me my water bottle (portable bidet!) and pain killers in a discreet little purse. I had bleeding for the first few days, and wore panty liners; then I got my period around day 5, and used nice fluffy pads, which felt nice and cushiony! I started experiencing different pain--this time, shooting sensations, like sharp needles. The Advil worked, except for the momentary pain from (a) bad sitting positions; (b) passing stool! I had no trouble sleeping. I used the sitz bath three times a day for the first week, and twice a day the second week. I'm still using it (going into week 3)--can't hurt, and it feels lovely. I sit and read a book. (My friend makes fun of me that I'll never be able to give it up. As I've said, I share these things with my friends so they can laugh at me and make me feel better!! And sympathize with my husband...) The little water bottle makes me feel super clean all day! ;-) The sharp pains have stopped, I'm taking no pain killers, and I just feel a little discomfort at times (like not inserting a tampon all the way). Like I said, it may not have done the trick--but the surgery itself, on a small area, for V V, was very un-traumatic.
CommentA note on husbands. Even a mild case of V V, like mine, makes the ole libido decrease. I have sex 1-2 times per week, and often have a warm bath after. I've found a position that's the least painful for me , and my husband is considerate--conscious that I'm having pain etc. For "my turn", we just focus on other things. I definitely can't be spontaneous, because I need to be in the right frame of mind--a few hours of "warning" (requested, of course, not demanded) is good. Now here I'll say something that might offend some people (except those women who told their husbands to go have affairs...!) ...about a year ago I agreed to my husband buying some porno videos. Man, I love those videos, because they take a lot of pressure off me! It's not the same as real sex, but I still think it's better than a divorce. And because my husband isn't as frustrated, less emphasis is put on sex, which makes me relax more, and enjoy it when I DO have it. (Not an orgasm, but just enjoy the experience.) Well, that's my contribution. ____ By the way, turns out hot pepper may not be so crazy after all, for a vaginal cream ingredient--peppers are used in several creams because, though they burn for a bit, they deaden the nerve endings, and act as an anaesthetic.
CommentI post every so often, but sometimes I like to give info to the women who have just joined and might not have read my old posts. I am also 23 and have been suffering for 2 years. I had a horrible case of vv--terrible pain during intercourse and intense burning/pain all day long. After trying different meds (and at different amounts) I found that Desipramine and Celexa really helped. My recovery has been slow. I have also been doing Glazer's Biofeedback for about 6 months. Now, I have just a little irritation all day long---so much better than last year! I can travel, exercise and enjoy life again. I know that I will only continue to improve. Intercourse is not nearly as painful, but it is still tender. I know as I continue the bio-feedback that this will also improve. It took me a year to find a combination of therapies that would even begin to relieve the terrible burning. The recovery was so gradual, first my worst symptoms ocurred farther apart, then I wouldn't feel them ever. This happened over several months. I just forced myself to remain positive about my gradual improvement. I also found Active Release Therapy and shiatsu/massage very good for calming my muscles down. I would also take pain killers during my worst points in the day. Dr. Stewart in Boston prescribed them to me because, as she explained, the most important thing to avoid is clenching. If you feel less pain, your body won't clench your pelvic muscles as much. I know that surgery has really helped some. I would caution women to think about it seriously. Both Dr. Ledger in NY and Dr. Stewart told me that it is very hard to treat a women for whom surgery hasn't worked (for whom the surgery actually makes them worse). Yet there is a good chance it might work. If I were to get surgery I would get it from Dr. David Foster at the University of Rochester (716.275.4004). He is on the board of the NVA, and he is just about the best surgeon out there for vv. he is also the leading researcher for this condition. Don't get a surgery from your local doctor who might not understnd all the subtlties of this condition. Only trust the top doctors---this is your body! I guess I try to write frequently to give other women some hope. In the beginning I was suicidal and extremely depressed the pain was so bad. I dropped out of school and moved back in w/ my parents who had to do everything for me: cook, laundry, drive me to a million doctor appointments. A year later, I am so much better now! I live in the city w/ my boyfriend(who has stood by me the whole time even though I would yell at him to get a "normal" girlfriend!) and I am back in school. My advice: 1) join the NVA! I found out about all the possible therapies out there (I tried every one) and who the best doctors are. Buy all their back issues---its the best thing you can do for yourself. 2) Find a really good psychofarmacologist: I found a brilliant man who, although he had never heard of vv, was an expert at treating chronic pain. Therefore, we experimented w/ different meds (anti-depressants) before we found one that helped the nerve pain. 3) go to NY and see Dr. Glazer, I think biofeedback is extremrly helpful.4)make sure every cream a doctor prescribes for you is compounded in a neutral base: estrogen, lidocaine etc. FINALLY: please don't lose hope! just keep trying new therapies! sorry I wrote so much, it just all came out....
CommentHi, I'll try to be as concise as possible. These are my comments about the Web site: 1. Thank you so much. I've had a vulvar condition for over one year now and this is the first Web site that really addresses the issue. 2. Could you organize the guest-book in a way that is searchable? A streamed discussion board would be really great -- it's self-organizing. 3. Would it be possible (or medically ethical) to place some answers to the questions posted? I felt my problem was voiced by other women, but there's no answer forthcoming in the postings -- hence my own posting. 4. The information about symptoms could be more detailed, especially considering the fact that there's apparently so much misdiagnosing going on. The fact that women go misdiagnosed for years does not give me much confidence in the final diagnosis -- sounds like a general "unknown" category to me. It seems many vulvar diseases look or feel the same, so that information about how to tell them apart would be critical. Perhaps even a table for comparison. I have found no Web site that does this satisfactorily. I have found NO Web site that mentions anything about discharge related with vulvodynia, and yet find many questions to this effect in your guestbook. These are questions for myself: I had bacterial vaginitis in May 2001. Since then I've had vaginitis about three times and overall mid-cycle itchiness and discomfort, with a weird stringy clear to green discharge (in addition to overly abundant "normal" white "oozy" discharge). My inner and outer vulva areas are now extremely thin, so that they bleed when I wipe with a tissue after urination. The doctor keeps telling me everything is normal and to use aquafor, which helps some. After reading from this site, I'm convinced I'm not a hypochondriac, even if it's not necessarily vulvadynia. Any thoughts? Please write to me at stefwef@hotmail.com with mdhelp in the subject (otherwise it will automatically get deleted as junk mail). Thank you! -- Stephanie
Comment1. Sorry I caused such a ruckus with that lidocaine question. I guess nobody knows the burning ingredient. 2. Question for D.: What are desipramine and celexa? I have tried numerous medications over the last 4 or so years and haven't heard of these. 3. For the woman in England., I belong to a listserve where we discuss plenty of treatment issues, but also many emotional issues tied to vv. If you are interested, you can check out some of the archives at www.thewebpaige.com -reesa
CommentReesa - I just realized that everyone is talking about lidocaine "cream". I've never actually seen it in a cream form! I've only ever seen it in a clear gel - and I've used it and it has never irritated me. Someone mentioned a brownish gel, but mine is completely clear. I have been getting weekly interferon shots - which I will post more information about when I have a bit more time to write - and they put the lidocaine on me every week before the shots. The bottle I have says it is a 2% oral solution, so I guess if you can put it in your mouth, you can put it anywhere else!! I did get it by prescription, but it was cheap! Ask your doctor for it.
CommentHas anyone had good, bad experiences during pregnancy. I'm planning to become pregnant next month (lord willing) and am nervous about the vulvodynia. I am on elavil now and that has pretty much controlled it, but I know it's not gone. Any advice would be appreciated.
CommentFrank has been contributing to this site for a long time and most of us enjoy his posts. It is nice to get a male's perspective on vulvodynia.
CommentI started to take 1 magnesium supplement (250 mgs) a day and have noticed a difference in pain. Taking Tylenol (2 regular strength) with breakfast and dinner helps prevent a flare up for those sensitive to food. Of course, it is important to check with a physician to see how long that regimen can be followed. Good luck!
CommentIn the 18th guestbook one woman mentions Dr. Monica Peacocke (646-672-0528) as a wonderful resource. I also think that she can be an extremely valuable doctor to consult. I am not completely cured yet, but she has helped me so much so far that i can actually imagie alight at the end of the tunnel. Call her.
CommentHi, These guestbooks have been really helpful to me. First, I want to give hope. I've had vulvar pain for one year and I'm not recovered but I'm so much better. I take imipramine and effexor. I have 2 questions I'd love some help on... (1) I see that Dr. David Foster is doing a study with desipramine. I read in the nva newsletter that he prefers this drug of all the tricyclics. I know it works a bit differently. Anyone out there have any ideas or experience to share? I would switch if I thought i might do better. (2) My flares occur right before and at the very end of my period. I confess to being pretty ignorant about my hormones. Since the flares are so predictable, does anyone think birth control pills might help me regulate them? I've never taken them before. Thanks for listening. Lia
CommentMy doctor says I have a bacteria called ureaplasma. A lot of people have this bacteria without any symptoms but since I have vestibulitis my doctor thinks I must treat it with antibiotics (doxycyclin) Has anybody heard about ureaplasma?
CommentP: Yes, ureaplasma can cause some VV symptoms. I was check for it a couple of times and eventually treated with an antibiotic called Zythromax (I tested negative, but just in case . . .).
Commentp: Could you please post and let me know if you have any luck with doxycycline? How much and how long? I have proctitis along with v.v. and that is one of the drugs that is supposed to be good for the proctitis if steroidal drugs cause hypersensitivity (which they did for me). Since the two diseases can be related, I would like to see if you are helped. You may want to ask about taking Diflucan to avoid yeast. Thanks and best of luck to you! Laurel
CommentM., I have 5% lidocaine gel - it is clear and it does not say "oral lidocaine" - maybe that is a more pure form of the lidocaine. What I used burned like crazy though. I'm seeing Dr. Ledger on Friday and I will ask him about it. -Reesa
CommentRegarding DOXYCYCLINE: Sorry to keep posting bit by bit - but other posts make me think of things I want to share. This time last year I went to a Dermatologist for the VV. She tried to treat me with Doxycycline (which, for me, did not help). She wanted me to stay on it for at least 3 months with 1 Diflucan weekly to protect from yeast. I inquired as to why so long a treatment. She explained that Doxy is the one antibiotic that also has anti-inflamatory properties as well. That's why it's popular for acne - it kills the bacteria within a few weeks, but the inflamation from some skin conditions can take months to calm down. Perhaps that's why it's good for proctitis (?) and maybe helpful for some with VV that stems from bacterial infections. The treatment did not help me, but it made me no worse for trying - so nothing lost but a little more time . . .
CommentFor M: No, I am glad that you posted the info for me. It makes me less nervous to try it now. Appreciate all comments! laurel
CommentI cried when I found this web site. I'm 26 years old and have been suffering from this illness for a year and a half. I had six steroid injections last year, all of which helped slightly but none made intercourse or tight clothing possible. Last month I underwent surgery for the condition. Currently I am still recovering and I don't know what to expect. Yesterday the site of my incision swelled up and became hard and bumpy and painful again. I don't know if this means that the condition has returned, or that the surgery has made it worse. I have to admit I feel so jealous of 'normal' women, all of my friends are enjoying a normal sex life while I am unable to tolerate it. I can't imagine what sort of toll this may take on my relationship; we waited five years to even try and now it seems like it will never happen. I do not know what healthy intercourse feels like and I don't know how this will affect my future in terms of marriage/children, etc. My heart goes out to Katie, who posted a few months ago - I do not have daily pain that limits normal activity, but I am afraid that the surgery may cause that to happen. I think I'm just very frustrated, but this site and reading the guestbook has made me feel so much less alone. Thank you.
CommentI was posting here for awhile and have been busy like you all trying a million things to get better. although it has only been a month, i am noticing that i am slowly but surely recovering do far. i want to share with you everything i am doing cause i am not sure which thing it is that worked for me. first off i have vv and i was developing an annoying case of proctitis. i believe this might have come about from a bad reaction to vaginal antibiotic and then from the topical yeast infection medicine. to treat it lately i have been going to an acupuncturist who is treating me for yeast (that's what he believes the problem is), i also go for chiropractic adjustments once a week and go to a physical therapist who specializes in pelvic floor problems. i started doing a lot of walking to strengthen the leg and stomach and pelvic muscles and am also using topical estrace cream and atarax (an antihistimine) daily. i also apply vitamin e oil every day and only wipe with vitamin e and aloe wet wipes (available at every pharmacy). from the pelvic floor muscle therapy i learned that my muscles were extremely tight so i started working on my breath. using my breath to help the muscles down there loosen up. it took a few weeks of experimenting but once i had it figured out i swear that has REALLY helped. i am by no means better but just feeling incrementally better every week is so awesome that i want everyone who might have a similar situation to mine to benefit from my experience. please email me if you have questions. wishing everyone courage to keep trying new things and a speedy recovery
CommentI was posting here for awhile and have been busy like you all trying a million things to get better. although it has only been a month, i am noticing that i am slowly but surely recovering do far. i want to share with you everything i am doing cause i am not sure which thing it is that worked for me. first off i have vv and i was developing an annoying case of proctitis. i believe this might have come about from a bad reaction to vaginal antibiotic and then from the topical yeast infection medicine. to treat it lately i have been going to an acupuncturist who is treating me for yeast (that's what he believes the problem is), i also go for chiropractic adjustments once a week and go to a physical therapist who specializes in pelvic floor problems. i started doing a lot of walking to strengthen the leg and stomach and pelvic muscles and am also using topical estrace cream and atarax (an antihistimine) daily. i also apply vitamin e oil every day and only wipe with vitamin e and aloe wet wipes (available at every pharmacy). from the pelvic floor muscle therapy i learned that my muscles were extremely tight so i started working on my breath. using my breath to help the muscles down there loosen up. it took a few weeks of experimenting but once i had it figured out i swear that has REALLY helped. i am by no means better but just feeling incrementally better every week is so awesome that i want everyone who might have a similar situation to mine to benefit from my experience. please email me if you have questions. wishing everyone courage to keep trying new things and a speedy recovery
CommentMiri & Laurel: Would you please explain the symptoms of proctitis? - and - What was the onset like? Before or after the onset of VV? I too am having trouble in that area and would very much appreciate some information before I discuss it with my doctor. I'm sometimes afraid to bring up new symptoms as I worry it will take focus away from the original issues - you know?
CommentJD, I have not had a child while dealing with vulvodynia, but I do have a question about you being on Elavil. While I was taking Elavil, my doctor told me NOT to even think about getting pregnant. What dosage are you taking, and how long have you been on it? Please be careful with taking this medicine when considering having a child. Make sure you consult with your doctor, and good luck.
CommentM- I was having rectal pain and bleeding. the area was dry and itchy and felt inflamed. i never went to a GI although i had an appointment. so far those symptoms have been gone for almost a month since i have been doing the whole plan that i described in the other entry.
CommentReeza- you mentioned going to Dr. Ledger Fri. Have you been to him before? Can you let us know about your appt. He seems to be doing some good research on vulvodynia regarding genetics. Have you been tested for the gene? I want to get tested. It seems those who test positive for the gene have a good chance of being cured someday.
CommentKate! Don't give up on your sex life! The more of these V V web sites I've read, the more sad stories I've heard about relationship problems developing out of sexual problems. Don't get too depressed, because it will just cause a downward spiral, until you don't even feel like trying to work on your sex life. Get sex toys, read erotica, buy manuals--anything!! We put too much emphasis on the importance of intercourse itself, and with no "cure" in site, this is not logical. It sounds like I'm in the same boat as you--not daily pain, but pain ever since my first intercourse. I've already decided that if this pain gets worse, or I can never have intercourse again, I'm not going to let it ruin my marriage. Eeek! Good luck with your recovery.
CommentHave posted once before with my story, I'm 29, from Australia & have 'mild' VV (pain only on intercourse) & just wanted to reply to Curly from 6/23/2002 re your 'ridges' or rings inside the vagina that hurt you during intercourse - this sounds like what I had a few years ago when I was still a virgin (& before I got the VV), I had pain when trying to have sex, went from dr to dr who all said there was nothing wrong, finally found a great gyno who said I was very 'tight' & he could feel a 'ridge' inside me, he at first suggested surgery but I was not keen so he gave me dilators to try, you start with a finger-width one, insert it every night & leave it in for about 15 mins, then when you feel ready you move onto the next size (use each one for a week or so, this slowly stretches the hymen). By the end of it, I could insert the biggest one & then went on to have glorious, pain-free sex with no problems at all. Just my luck though, I fixed that problem & then I get diagnosed with VV a few years later! (sometimes I wonder if I was just not meant to have a 'normal' sex life!!) However, I'm now going to go back to that gyno, as I'm starting to wonder whether it's possible the dilators may help me again with this condition, as to me the pain on intercourse now feels exactly the same as it did back then when I was a virgin (it's like there's a hard, painful 'barrier' right inside the entrance, which I guess is the inflamed vestibule but I'm now wondering if it could be this 'ridge' thing again). I am also having acupuncture (1mth so far), too soon to tell yet if it's helping as I still have pain if I attempt sex, the doctor said it will take about 3 months to help. It can't hurt & it has certainly helped me let go of heaps of anger & tears that were buried deep down inside. Also wanted to urge everyone to stay hopeful & also to NOT let this thing take over your life, you can get a bit obsessed looking on the internet for different treatments etc, but sometimes I think you have to focus on all the good things in your life & not get obsessed with this or it will really bring you down. Yes it is a horrible, unfair condition that causes so much pain & distress (not to mention a HUGE strain on intimate relationships) but if you have a good partner (like I luckily do), focus on all the good aspects of your relationship & like others have advised, there are lots of 'outercourse' stuff you can do which is just as satisfying in the meantime (...we WILL be cured of this one day!) I used to tie myself in knots with anger at the drug companies etc that might have caused this with their thrush treatments, chemicals in pads etc, but the thing is, without proper research, there's no way we ourselves can prove such a connection, so there's no real point in getting angry about all the possible causes & looking to blame someone. This will only hurt you, not them. One day they will figure out the cause, we just have to focus on getting better. Also I agree that people should leave Frank alone, what ever happened to freedom of speech? If you don't like what he says, then don't read it! This site is here to help, not for everyone to criticise others. Also, don't know if this helps, but I read in an Aust magazine from year 2000 the other day about vulvodynia & food allergies, this girl had really bad symptoms plus recurrent UTIs & she had an allergy test where they found she was allergic to the main component of ALL fruit & vegies (ie, not just oxolate), it began with s, can't remember the name but basically as soon as she changed her diet her symptoms all disappeared completely!! Only problem obviously tho is how do you maintain good health without fruit & vegies?? Good luck to everyone.
CommentI asked my doctor if she would prescribe Lidocaine for me because sitting at work is soooo bad. She did not want to give me an ointment or cream. She prescribed a liquid form that I put on a cotton ball and put it where it hurts and let it stay there for about ten minutes. It's not a cure, but it has made a hell of a difference in the tolerance of sitting at work. It does not burn me, but I can't say what it would do for others. It's effects seem to last about 3-4 hours for me and then at lunch time at work I apply it again for the rest of the day. Some of you might want to ask your doctors about this. It's actually called Lidocaine Hydrochloride. It also seems that if your not feeling the pain, then I don't clench so much to make me hurts in even more places, so if anything it kind of helps with the "stress" "down there". Also, has anyone been told how long they can use Estrace cream for? I find the "stretchabilty" of my skin better when I use it and if I stop using it, the feeling of tearing comes back. I don't think this is something we can use indefinitely is it? I would also like to know if anyone could tell me when they have acupuncture treatments what is done? Where is the doctor working on you and what is the procedure like? Also what is Active Release Therapy? How does it work? Is it exercises one does at home or does the doctor do this to you? Thanks for any help.
CommentMiri - Sorry to get so personal, but I have a few more questions: When you say rectal pain and bleeding, do you mean "rectal" as in from the inside, or "anal" as in the outer tissue?? Did anyone diagnose you with Proctitis? Thanks!
CommentHi Jennifer. Just want to let you know that I went to see Toth and he found this bacteria actiamyces which he said needed IV therapy. Well I am currently recieving IV and don't really see a significant improvement. Well I am on my fifth day and praying that this works, if not my husband is going to ring my neck........... and if this does not work I guess I am going to have to live with this because I don't see anything else I can do. I am very discouraged and sooooo stressed out. Anyway Dr. Toth keeps on telling me that this will work. He seems to be soooooooo sure of himself. I don't know. Five more days and I will see........
CommentTo Dee: Thanks for your post, I will ask my doctor about the Lidocaine, Do you know how long you may use the lidocaine without any ill effects? I am sorry but I do not know about how long you may use Estrace. Thanks again for your post, I hope it will help me too.
CommentWould anyone be able to refer me to a doctor in the New York Metropolitan area? I have this condition for 2 years now. I recently went off Elavil cold turkey, because it was not helping. I've been following the low-oxalate diet, but have cheated in the past 3 weeks, and I am suffering because of it. I am frustrated with seeing these docs who just want to give you pills, and would love to hear of holistic alternatives if anyone has any. Also, is anyone receiving acupunture for this, and is it working? Please e-mail me with any advice, or just for some support. I am feeling very frustrated and depressed lately.
CommentWould anyone be able to refer me to a doctor in the New York Metropolitan area? I have this condition for 2 years now. I recently went off Elavil cold turkey, because it was not helping. I've been following the low-oxalate diet, but have cheated in the past 3 weeks, and I am suffering because of it. I am frustrated with seeing these docs who just want to give you pills, and would love to hear of holistic alternatives if anyone has any. Also, is anyone receiving acupunture for this, and is it working? Please e-mail me with any advice, or just for some support. I am feeling very frustrated and depressed lately.
CommentJennifer from Alexandria - Be careful with Toth. He told me I had Actinomycies (sp?) as well, but tried to treat it orally. When I got no results after two different prescriptions for Antibiotics I went back to my Gyn who said that, unless I had at some point left a tampon in too long and got toxic shock, or at some time had an IUD - I had never had either - that it was basically impossible to have that bacteria. I'm suspicious that Toth's office is not particularly clean . . .
CommentI am a long time vetera of VV. I have post in the earlier guest books. (Like the 1st and 2nd ones) I have also post later on to. I am a surgery success story also. I went down all the other paths of treatments. I was reading Mabel's story, How are you healing? It took me a good 6 months before I felt totally normal. I have been pain free since December of 1994. This treatment is what worked for me. However, my surgeon was killed in an auto accident in May of 2000. I was so glad to have found him, and devestated when I heard of his loss. My advice with Doctors is that, go with your gut feeling. Just because they have MD after their name, doesn't mean they know your body. My Gyn listens to me now, because after being in pain for so many years, you'll know when something is wrong/right. I just start laughing especially when a male dr. starts tell me how I should feel, esecially when it comes to PMS. No offense to male drs.
CommentHi I saw a few posts about Dr. Toth. I would appreciate hearing more about any experiences with him. I have been having extreme vaginal pain, swelling and redness for about a year. I just went to see him ($610!) to see if my gyno missed some bacterial infection. I am awaiting my culture results. All vagina's have bacteria--that is natural. I wonder how he determines an overgrowth versus normal. I agree with the previous poster, he seemed very sure of himself
CommentHello. I am being treated by IV right now because Toth found this actiomyces bacteria and is soooo sure that this will work. I hope soo. I feel a little better not alot better. I know that Jennifer who has posted on this website has been treated with success by Toth. He is a very nice man and very interested.
CommentOh I also wanted to ask you what do you think that he was very sure of himself? Did he tell you that he felt like you had a bacterial infection of some sort.. Oh about the actiomyces bacteria... I went over and over with him and asked him if this was part of the normal flora bacteria and he said no. He said when he cultured it that mine had actually over grew. So again, I am trusting that he is a specialist and has been around for a while............ but will soon let you know how I feel in about a week................. I am anxious to hear about your symptoms. I have some discharge (no odor) and my outer area is very sore and irritated for about a year and a half now......
CommentI am very interested in hearing about you. My symptoms started about a year ago too and have so much of the same symptoms. I have a stringy discharge and also soreness and redness that sometimes bleeds in the same area. I have been to several gynos that would culture and say oh everything is fine but it wasn't obviously. How are you feeling today. Are your symptoms disabling. When I got pregnant my symptoms were horrible. Since having my baby they are better but still bad...................
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CommentI saw Dr. Toth, but he did not find anything and so did not treat me. I have spoken with 2 women who believe he cured them, so I was hopeful... I liked Toth, though I found some of his ideas a bit far out. He asked a lot of questions about my mom. The implication seemed to be that I could have inherited bacteria from her. That was hard for me to understand. I don' t regret doing the tests. I wish he had been more helpful after the tests came back negative, though. He told me over the phone and wasn't really receptive to questions I had about what other treatment options he recommended. I definitely felt that he is only interested in the bacterial cases. He did, however, express his opinion that my problem is of a limited duration--that is, not forever--and I have held onto that. He told me that he thinks I "insulted" my nerves with one or more topical creams (I did use way too many of them) and that eventually that insult will subside. He said the nerves have memory and it takes time. This seems to me as good an explanation as any and I continue to hope he's right. I saw him about 6 months ago.
CommentVery nice and usefull site. Found you on <a href="http://www.yahoo.com">Yahoo</a> dir.
CommentA great resource! Thank you!
CommentTo Donna, I don't know how long you can use the Lidocane before there may be side affects. The doctor told me that I can use it as often as I like. Several times a day if necessary. Good luck. Like I said, it's not a cure but it can really get you through some rough days. Does everyone know that there is a new book available from Dr. Glazer and Dr. Gae Rodke called "The Survivors guide the Vulvodynia" (or something to that sort). You can get it on the Amazon.com website. Go to books and in search, put in vulvodynia and it will bring the book up. It's a paperback and is under $12.00. They also recommend other books that may be helpful.
CommentDid anyone see this book yet? It's called the V Book by Dr. Elizabeth Stewart. Here is a link. I think I'm going to go buy it after work. http://www.randomhouse.com/bantamdell/catalog/display.pperl?isbn=0553381148
CommentRe: The V Book, I strongly disagreed with much of what the doctor said in her book. Not necessarily about vvs, but about the everyday gynecological issues women face. This is the first time that I felt more educated about my condition than a doctor. Dr. Stewart needs some major feedback, so everyone should check out this book, and let her know if they disagree with what she wrote.
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CommentI have not posted to the guestbook in a long time but I find it so helpful to me, especially on those really bad days when you feel like you just cant go on with this pain any longer. I am not sure how many of you live in the Phoenix Arizona area but I would like to get a support group together. I think it would be helpful for any of us in the area to get together and talk about our pain and how it affects our lives. If you are interested in this please e-mail me. I have never done something like this before and my husband thinks it is a wonderful idea, it is hard to talk to people about vulvodynia that are not going through it themselves. Even if we meet once a month... I think the support we could find within eachother would be wonderful! Please e-mail me with any suggestions you may have. I look forward to hearing from you. P.s anyone read Dr. Glazers book yet? I ordered it today and I am anxiously awaiting its arrival!
CommentJust a reminder...Toth does not claim to be a vulvodynia doctor, he is Infectious Disease GYN, and will not know much about using elavil, tricyclics, kenalog, oxalates, etc. He is for the women that feel strongly that there is a bacterial component to their problem.
CommentI also ordered Dr. Glazer's book. It got RAVE reviews at amazon.com, so I'm very excited to read it!
CommentI just read the "V" Book by Dr. Elizabeth Stewart and loved it. I thought this is one book every women should own. Had I read this a year ago, I probably would not be in the position I am in today!!!
CommentDid anyone else see the article on the internet about estrogen only use causing ovarian cancer? That's just great since I use Estrace cream for vulvar pain. It's the only thing that's given me any relief. It also relieves my hot flashes somewhat. The study involved women who used estrogen for 10-19 yrs. I haven't used it that long, but if there's no cure for Vulvodynia, what are we supposed to do now?
CommentHello, If you are interested in reading some in-depth approaches to the Pharmacological treatment of vulvodynia I highly recommend ordering the Spring 2002 NVA News letter. The article is authored by Dr. Justin Wasserman. You can find out how to order it by going to their web site. Use connect with others to get there. I go to Mayo Clinic next month and look forward to hearing what they have to say. I will report back anything new. Best to all. Jean
CommentJustine--It's been 4 weeks since my operation. The spot stings when I urinate, so I'm still using the little water bottle, and I try to do the sitz bath once a day. I saw my doctor last week, and he said it appears to be healing well. He said there isn't a scar forming, which was my biggest worry. I'm definitely not having sex until I touch the spot and don't feel pain! I'm glad to hear your operation is was a success--I've read of so many women in so much pain, over in the chat room. http://groups.yahoo.com/group/vulvodynia/ If you have time, you should pop in on that site. There are a couple of women considering surgery, and they're looking for advice/experience of others who've had it. I don't feel qualified to speak, since I'm not out of the woods yet!
CommentI have to report that topical Estrace cream has revolutionized my sex life. For the past 4 years suffering from vulvodynia/vestibulitis, my husband and I have just about given up on sex. It was just too painful, and none of my doctors could help me. Finally I found this board and discovered how Estrace cream had helped other women regain the normal sexual function. Around the end of April 2002, I started applying the cream every night to the areas that were irritated and red, and just about 3 weeks ago I was finally able to have pain-free sex for the first time in 4 years! This is truly a miracle! I can now have sex every day if I want to. I don't know what I'd do without Estrace. I encourage every vvs sufferer to give this med a try!
CommentOver the weekend a frined of mine read an interesting article to me - I think it's from a magazine called Women's Health - She is going to send it to me and I'll post the exact name at that time . . . Anyway - It was a short blip about vulvodynia. A researcher at Yale University has said that this is a long term result of having had Chicken Pox - that vulvodynia is related to shingles - and that the biggest problem is that it is never identified on time. If identified within 2-3 days of the onset of redness and burning it can be treated completely with drugs like Zovrax. If not caught within a few days it becomes a permanent problem and can perhaps be controlled with tricyclic antidepressants. I don't know if I buy it, but just out of curiousity - Who here has had Chicken Pox? I didn't have them until I was 25 years old!! Anyone else have them as an adult?
CommentThat's an interesting theory. I had chickenpox as a child and shingles when I was in my late 20's. That was quite awhile ago so for sure no one knew what Vulvodynia was at that time. Sue
CommentReesa: Here is what it says on my specially-made Lidocaine bottle, maybe you can bring it to your doctor and ask them to make it up, it does not burn: Lidocaine HCL 5% Anhydrous Plo Gel TO Kate and ALL: There has been a lot of talk about surgery recently on this page. I had extensive inflamation and my SURGERY was not a success. It was performed by Dr. Foster. I was in the hopital overnight. The recovery was painful and took 8 weeks. After my surgery: the "new" skin is still tender, but the inflamation relocated and is worse than before. Dr. Foster tried steroid shots on me--very painful and didn't work. He told me he had no more suggestions and I have not heard from him since! I wish that I had researched more and tried other things before following his advice of getting surgery. Specialists tend to look at things in one way. THey also never talk about the emotional aspect of living with this condition either. I have also tried Desiprimine through Dr. Foster as well, it did not work for me. I am seeing a woman now at the clinic Women to Women in Maine. SHe took stool samples and discovered I have yeast in my intestines and a bad bacteria as well. I am on medication and yeast/sugar free diets. Cross your fingers...
CommentTo bec: don't forget that everyone has yeast and "bad" bacteria in their intestines. That's normal. Don't let them start treating things that don't need to be treated. You can end up going to far! Good luck!
CommentI just wanted to add to bec's post: I have recently completed a series of interferon injections. It is too soon to tell if they will give me any relief; however I did have to see a few different doctors to coordinate my receiving the injections. During a consultation conference call at Robert Wood Johnson Hospital - I was specificly warned never to let anyone perform surgery or use any kind of laser to treat my vulvar area. This makes me think again, that we suffer from different causes, because it has worked for a few. I would like to hear from those who have had surgery after a year or two has gone by . . . Also bec - how do they plan to treat the yeast and bad bacteria? Is Women to Women Christiane (sp?) Northrup's place?
CommentTo M: Regarding surgery and Vulvodynia. I know there are several different procedures for several different areas of pain. My wife had surgery to repair a recurrent tear, six o'clock position. The surgery did not resolve the problem and the tear persists with or without sex. Just my opinion, whatever is causing the tear, thinning of the skin; surgery does not help. To anyone not familiar with my previous writings my wife did see an Endocrinologist who said her estrogen levels blood and cell were normal. Sorry if I upset anyone because I am a man but my wife refuses to get involved.
CommentFrank - Not so long ago a woman posted here about that same type of tear. I'm not sure if it was in this guest book or #18, but she saw Susan Kellog-Spadt, at Graduate Hospital in Philadelphia after many other doctors had been unable to help her. Susan did Kenalog shots (I think that was the treatment) and now this woman is fine. I don't remember her name - but she named Susan Spadt in her post and gave all the information about her treatment. If you did not see it before, you should definately comb through and read the post. It caught my attention because of Susan's name - she is the one who has just done my interferon shots, and though I am still hoping for the best and not knowing the results - Susan has been a God send to deal with through this whole mess.
CommentTO M: To answer your questions: The clinic is called Women To Women and it's located in Yarmouth, Maine. They take a holistic approach--look at what's going on with your entire body and see if there are any connections, and they also look at the emotional aspect. They work with women all over the country for numerous conditions and problems. She put me on difloucan for a while for the yeast, Ultra Flora to replace the acidophilus in my stomach (I was on antibiodics a lot before all of this and they wiped out my natural bacteria in my stomach) and a couple of other herbal medicines in the pill form. I have tried everything else for two years and nothing has worked. THis is a new way to approach the problem, hopefully it will help.
CommentTo M: Thank you so much for the information, actually I have read of other Women taking those shots. My wife has an appointment for Sept. with a new gyno and I think she may try that treatment. I only wrote that post because whatever is going on with the skin tearing and thinning, surgery did not help. Thanks again..
CommentDr. Glazer's book, "Vulvodynia Survival Guide" is an excellent book. Very practical and lots of great info. I'm very reassured about my condition already. It's very reasonably priced, so I urge you all to buy it!
CommentAfter a year of intense pain during sex and a few tries at antidepressants with too may side effects and no relief, I am entering a study my doctor is conducting that involves a botox injection. After reading the postings on this site, it seems that this may be my only shot (no pun intended!). I'd be interested in any input people may have as I'm getting a little nervous and the shot is next week. I just want my normal life back!
CommentTo Karen: Botox has become a cure all treatment for all sorts of aliments. One thing to be aware of it works by causing temporary paralysis of the muscles injected. That in mind if the doctor injects muscles that are spasming and causing pain a good result should take place, if however the botox reaches a muscle such as the sphincter think of the problems. Best of luck.
CommentTo All: Sorry to post so often but I was surfing the net to find out more about Kenalog. I got onto the "Steroid Warning Network" I don't know how many posts I read on injectable Kenalog but only one of them was positive. This medication is a steroid, folks take it for Asthma and allergy relief and some doctors use it for dermal abnormalities like freckles. Many of the posts complained about cottage cheese or deep indents at the site of the injection. Some talked of joint damage and tumors. I would love to have my wife free of the tearing problem but I don't want her to suffer from any of these complications. Did not mean to write something negative but we need to know the down side. Thanks.
CommentFrank - There isn't a drug on the market that doesn't have a downside. What did you think you'd fine on the "Steroid Warning Network", good news? I just looked that site over and most information there is related to misuse of steroid drugs. In addition, lots of drugs, even when used properly, have side effects that you simply have to "get through" in order to achieve the benefits of the medicine. Heck, look at chemotherapy . . . Don't write a treatment off simply because you can find a horror story about it. There is no such thing as a completely harmless drug, everything has it's risks, make your choices wisely.
CommentI just wanted to take a moment to share some of my experiences over the last several months. i have ic and vestibulitis. i have had extremely painful sex, both associated with the bladder and the vulvar pain. the gynecologist i am seeing here in miami has me on a program, which seems to be working, but slowly. i feel a bit of improvement. I am taking Sarafem antidepressant, with little to no side effects. In the beginning, I felt very "foggy", but after about 3 weeks, I feel pretty much normal. I am also using Kenalog cream 2x/day, and Estrace cream every night with the Kenalog. I have the estrace compounded by a compounding pharmacy, to remove the glycol, and it does not burn anymore. I also have Lidocaine gel, again compounded, to remove the glycol. The Lidocaine really helps with the sex issue. Finally, I have consulted with a nutritionist in Chicago (by phone) (nutritionalconsultants.com) who has me on a low acid, low oxylate, low sugar and low yeast program, along with vitamin b complex and magnesium and acidophilus. I am actually enjoying the foods I can eat! I am hopeful that I will continue to improve, though not sure. but if anyone can benefit from this info, or needs information regarding treatment in south florida, please feel free to contact me! Good luck to all who are suffering. :). Karen
CommentHello, I am 20 years old and have been suffering from what I am positive is vulvadynia for a little over a year now. Like everyone else, it started out with what was supposedly a yeast infection, only the cultures almost always came back negative. I have been going to the gynolcologist up to twice a month until just recently...the problem hasn't stopped but I've become sick of paying for prescriptions and doctor's visits for my gynocologist to keep on telling me it's a yeast infection. The cultures always come back negative...how could it be yeast. I have tried every yeast infection cream and treatment possible, including terazol and a regimen of diflucan (one pill every three days for a month) and nothing has helped. My gyn prescribed me clobetasol and for a while that seem to help ease the itching and redness, but it didn't really do anything for the swelling of my bartholins glands or for the discharge. This has been really rough on me. I am a college student and I work part-time, so it's impossible for me to avoid stress. I feel somewhat lucky compared to the other women on this sight because I am not always in excruciating pain, more like extreme discomfort.I haven't had sex for over a year because when this all started I became convinced I had an STD, although now I've pretty much ruled that out since I've been tested for everything about a hundred times. This condition interferes with everything...my social life, school, work...half the time the whole situation gets me so depressed that I Just don't even want to go out. I am not in a relationship right now and have not been in one since this all started, but I can imagine how difficult it would be to have a normal sex life with this condition. I have not been diagnosed with this, but I am almost positive its the problem. I asked my doctor if she could refer me to anyone who specialzed in this, and she said that she couldn't and that we should just keep on treating it like a yeast infection...but no I"m sorry I'm not doing that anymore. So I guess I just have a few questions for any one who can answer: My main symptoms are constant swelling of the bartholins (when it gets really bad they get rock hard) and an almost constant thick whitish or clear discharge(I know discharge is normal..but ALL the time?and so much of it?)Does anyone else have these as their major symptoms and what treatments do you recommend? ALso my periods have recently become incapacitatingly painful(the first day or two anyway)...might this have anything to do with my problem? Also I notice that often times when I urinate I feel a pain right around where my ovaries are, like someone is pushing down quite hard...sound familiar to anyone? I do all the underwear stuff I'm supposed to and I don't use soap down there and all that...any other recommendations? I've read about this oxalate diet...if anyone has more info on that I would appreciate it. I know this condition can't really be cured completely but if I could get a certain amonut of relief I really think that it would help me a lot...I just want to have a normal young adult life again!!! Thanks for listening to me vent...and any info would be appreciated...Laura
CommentLaura - Have you been tested for any other bacterial infections, such as Gardnarella, or Beta-Strep (many docs say Strep does not produce symptoms, but I have read of many women that disagree)? Have you been checked for a low-grade bladder infection? There are a number of curable infections, have a frank conversation with your doctor and insist on being tested for EVERYTHING, don't give up after yeast. Good luck.
CommentDoes anyone know Dr. Klein? He is a pain clinic MD in Florida.
Commentto Laura...i am also 20 years old and know how hard it is for someone our age to go through this. I am also in college and i don't know how i got through last semester, everyday i was in terrible pain, but all my doctors said it was yeast, then a bladder infection, etc etc. It was not any of these, although my new doc had me on diflucon once a week for 6 weeks. Anyways, i went through 3 doctors until one finally referred me to Dr. Stewart in Boston. The first 2 doctors just kept giving me yeast creams like terazol, which burned so bad, and antibiotics , even though cultures came back negative for both. I just want to offer you some hope because it is out there, you just have to find a doctor who knows about vulvodynia. I have only been on treatment for about a month now, I am taking nortriptyline(a tricyclic antidepressant/nerve blocker) and using ultrabate 2 times a week(its like clobetesol) topical estogen cream is helpful to most women , but i could not tolerate the last kind they prescribed me, and I've started biofeedback w/Dr. glazer. I have only been doing biofeedback for 2 weeks now, but i can already tell that it is helping a little and will help more and more as i do it. The first thing to do is find a good doctor, because many of them don't know what the hell theyre doing and are really stupid and shouldn't even be practicing. Anyways, this site can be helpful in finding a doctore near you, and finding some support. I've been on treatment for only a month and can already see a difference. When this all started i didn't want to hang out or go anywhere, but slowly i've been feeling better enough to do things. This has also been hard on my boyfriend, but he has stuck by me and understands that this will take time. Don't give up hope, it will take time but you will get better
CommentLaura, yes I had symptoms similar to yours. I am the Jennifer obsessed with thinking that many times vulvodynia is an infection. I absolutely think you should give up on treating this as a yeast infection, I completely agree that you need to stop listening to your current doctor, because obviously she is not helping you, I do not think you need to be tested again for STD's...you have been tested for those enough. Although, you could be tested for mycoplasma, most doc's don't test for that one. I have a question...did this start with a new sex partner? Also, have you only tried meds for yeast, or have you tried for bacteria also? Trust your intuition.
CommentOne more thing...FRANK, I had Kenalog shots years ago. They helped somewhat and I did not have any negative affects from them.
CommentTo M & Jennifer: Point well made regarding harmful effects of medicines and yes that site was pointing that out. Jennifer did you take the shot because of pain and inflamation or thinning skin? Also were the shots given at one time or several times? I would hate to support my wife getting Kenalog shots only to have the skin thin out and tear even more, right now the tear is like a paper cut painful but not very deep. Jennifer I remember some of your posts and your beleif that in some cases Vulvodynia is caused by S.T.D. or infection, do you think it is possible the infection if not yet discovered has other modes of transmission. I know I have not had other sex partners and I believe the same of my wife. I keep an open mind to any possibility even stress triggering something in the body. Still baffles me why the skin would thin out just in that area? I know symptoms vary and many sufferers do not get the tears but rather pain and a combination of burning , swelling, plus several other conditions causing discomfort and disability. But regarding the thinning and tearing, could a doctor with the right research tools looks at some of these skin cells and figue out what is missing? I read someone here is considering Botox, how about collagen to sooth and repair the damaged skin? Few of the doctors we have seen can handle this illness and talk openly and at ease so I can't imagine running this by a skin doctor. Sorry to go on it is one fifty in the morning and I"ve taken a muscle relaxant and sleeping pill for my neck and back so I'm a little out of it. Thanks again..
CommentJust popping by as I do every so many months to see if someone new can be helped as I was: February 14, 2000 (New York, NY) -- The cause of Vulvar Vestibulitis Syndrome (VVS) has long been a mystery. Now, two Weill Cornell Medical College researchers may have discovered the root cause behind the chronic inflammation and pain that plagues women with VVS. In results published in this week's American Journal of Obstetrics & Gynecology, Dr. Steve Witkin and Dr. William Ledger of Weill Cornell's Department of Obstetrics & Gynecology have shown that a rare form of a gene, called the 2,2 allelle of the Interleukin-1 Receptor Antagonist Gene, provides the first physical explanation of VVS and holds the first promise of a cure for the disease. BACKGROUND & MAJOR POINTS OF VULVAR VESTIBULITIS ARTICLE 1. Vulvar vestibulitis is a syndrome characterized by an inability of a woman to have sexual intercourse or insert a tampon into the vagina without considerable pain. The pain is due to an inflammation of the four small vestibular glands, two on each side of the vagina, that secrete lubricating fluid. Physical examination in most cases is unremarkable, so that the disease is very hard to diagnose. 2. It has been estimated that as many as 15% of women seen by a general gynecologist have this problem to some extent. 3. The cause is unknown and there is no uniformly successful treatment. In many cases, surgery is employed to remove the vestibular glands and the inflammed vulvar tissue. 4. Many women see a multitude of physicians as well as psychiatrists seeking an explanation for their symptoms. Discovery of a cause for their disorder would offer considerable physical and emotional comfort to many patients. 5. The chronic inflammation associated with VVS is induced by the production by white blood cells of the chemical Interleukin-1. The activity of Interleukin-1 is inhibited by another chemical produced by the same cells known as the Interleukin-1 Receptor Antagonist. The relative production of both of these chemicals keeps the inflammatory response in balance. 6. The gene coding for Interleukin-1 Receptor Antagonist is polymorphic, i.e., there are small differences between individuals in the exact genetic sequence of this gene. A rare form of this gene, called the 2,2 allele, is present in less than 10% of the population, and is associated with more severe and more chronic inflammation. This is due to an imbalance between Interleukin-1 and Interleukin-1 Receptor Antagonist production. 7. In their latest study, Drs. Witkin and Ledger now report that more than 50% of women with vulvar vestibulitis have the 2,2 allele of the Interleukin-1 Receptor Antagonist gene. This suggests that their symptoms are due to an immune imbalance in the regulation of inflammation. It provides, for the first time, a physical explanation for their problem, and suggests further avenues of research to end their suffering. ----------------------------------------------------------------------------------- SUMA (found at GNC and other health stores) has been shown to reduce inflammation IF you have the gene. One other thing, if you have the gene and get pregnant you should consider having an amnio to see if your unborn child carries the gene. If he or she does, there is a greater risk of premature labor, which may be prevented with the use of certain medications. For me, I am 100% sure that there was never an infection. My doctors were more than thorough and are in fact GYN's specializing in infectious disease. Also, I miscarried at 6 weeks back in March and the products of conception were tested for infection -- NEGATIVE. Turned out it was a chromosome issue (trisomy 16). I am now 12 weeks pregnant, hoping that this one is healthy! Good luck to all. If 50% of the women affected by this disease do carry the gene, that means some of you have it!
CommentI have a question about NEURONTIN. I just started taking it for vulvodynia. Has anyone here had success with this drug? Thanks, Lisa
CommentYes, I have seen Dr. Klein in Orlando for pain. Please feel free to email me directly with any questions.
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CommentI have vulvodynia with extreme stinging and burning. I've been feeling this way for the past ten months. My doctor tried a treatment of invection around my vulva and a topical lidocaine 2% and benedril pill to rule out and allergy. To no avail the treatments made me worse. My Doctor doesn't know where to refer me. I would like info on any doctors in Miami, Florida or within traveling distance that may be able to help me. And also, I would like to know if anyone can give me info on any treatments that may have worked for them. Please help me I don't know where to turn.
CommentI have had vulvadynia for 5 years. Mine is the type that is helped by avoiding high oxalate foods: coffee, chocolate, beans, vegetables, fruits, tomato sauce... very difficult I am trying to use estrace to help build up my vulvar tissue. I don't have any tears or skin problems, just want to strengthen the tissue to try to avoid burning. Estrace alone burns me. Does anyone use a hormone cream that does not burn them. I have an excellent pharmacist who will mix any compound, but I'm not sure what to ask for. If anyone is having success with this regimin, please post as soon as possible. Many thanks!
CommentMaria Eva: Did you read my entry 2 posts up regarding the gene? I am so frustrated that no one seems to listen. Sorry for the cranky tone, but the discovery ended my misery and I just don't understand why people won't test for the gene to at least rule it out. Instead everyone wants to keep on trying new meds which could possibly cause even more problems! This is frustrating enough not to want to post anymore, but I'm still hoping to help at least 1 person lead a normal existence. Need Help: Most vaginal creams contain propylene glycol (spelling?) which vulvodynia patients are HIGHLY sensitive to. This ingredient WILL cause worse flare-ups. Have your pharmacist mix the meds without using the p.g.
CommentIn response to some questions, yes I have been tested for bacterial infections...always negative. And yes this did all seem to start after I had sex with my last boy-friend...that's why I was so convinced it was an STD for awhile. What is biofeedback by the way? I am going to a different doctor this Tuesday, but he is still in the same medical group. I'm trying to stay within my HMo because going outside it costs precious moolah! However if this doctor doesn't tell me anything new I will be seeking specialist help...so if anyone knows of any doctor specializing in this in the L.A./ Ventura County area, I'd like to know their names and how to get in contact with them. Also I know I had someone(jennifer) say that she had the same symptoms as mine...what helps with the swelling and discharge (my god that sounds disgusting!)Sorry to be so graphic...but I need to know!...thanx...Laura
CommentTo Susan regarding the gene: You never really said it, but do you have the gene? Have you used the SUMA and has it helped. I agree, before trying any other treatment that could cause side effects, everyone should be tested. I called Dr. Ledger's office, you don't even need to travel to NY to be tested. He said contact Dr. Witkins lab at 212-746-3165 and he can send a kit to me and I can bring it to my Dr. I think they just swab the inside of your mouth. Could other people who have been tested give some feed back on this. Thanks
CommentTo Lisa... Be hopeful about the neurontin. I myself could not handle it--too sedating. BUT... this is supposedly a very atypical response. I have had 2 specialists tell me it is their drug of choice to treat vulvodynia. FYI, both of them told me that sedation is often a problem because of improper dosing. They said that 100 mg at night for a week is the place to start so you build a tolerance. More than that and you may be uncomfortable. Give it a shot and be careful not to titrate up too quickly. And if you can't tolerate it, there are innumerable other options. Good luck.
CommentTo Lisa... Be hopeful about the neurontin. I myself could not handle it--too sedating. BUT... this is supposedly a very atypical response. I have had 2 specialists tell me it is their drug of choice to treat vulvodynia. FYI, both of them told me that sedation is often a problem because of improper dosing. They said that 100 mg at night for a week is the place to start so you build a tolerance. More than that and you may be uncomfortable. Give it a shot and be careful not to titrate up too quickly. And if you can't tolerate it, there are innumerable other options. Good luck.
CommentTo Susan (or anyone) regarding Ledger and the gene... Does one really need to do the test? Couldn't one try SUMA as an experiment? I have done that--500mg 3X a day as Ledger suggests with no relief. So I'm thinking I don't have the gene. Is it reasonable to draw this conclusion? If I were "positive" the SUMA would help, right? Any insight you have would be great. And thanks for posting some good news!
CommentKaren: Sorry, I thought it was clear that I do indeed have the gene. The SUMA works like a charm for me when I have occasional flare ups. It calms things down completely within a couple of hours. Note: I had 24 hour a day excruciating pain for about 2 years before finding Ledger. Interesting enough, my pregnancy is supposed to be a great help in keeping things in check. Dr. Ledger says the "swirl of hormones" acts as a natural anti-inflammatory. So far, so good. Thank God! Lia: Not sure how to answer the question. I suppose you could still have the gene and not react to the SUMA. With any disease, each person may react to a different med. I think it may be safe to assume that you don't though, because most people seem to react to the SUMA in the dose you mentioned. Ledger mentioned that one woman, who was not able to have sex in 3 years, suddenly became "very well" within days and her husband called Ledger to thank him. Seems she was very happy to be able to have sex again and pretty much attacked her husband several times a day. A happy ending to a horrible ordeal... I would imagine that any lab that does genetic testing can do the test for you. As a side note, the gene also explains my constant nasal congestion which no one could ever explain to me. Interesting, huh? Good luck to all.
CommentLaura....what helped me get really better was intra-venous antibiotics. BUT, what helped relieve the symptoms quite a bit, if you are not ready to take antibiotics, was rinsing the vulva with water after each urination, and soaking in a tub of water for five minutes at night. If this helps (if you are religious about it you should be helped significantly within a weeks time) then I think it is not muscular...don't you?
CommentFrank, sorry I have not answered your questions. I just read back and see you wanted to know why I had the Kenalog shots. During all of my doctor visits, only one doc said I had thinning skin, and I question it, because I think some of these vulvodynia docs say the same thing over and over. My chief symptoms were redness, inflamation, and stiffening of the vulva tissue. I did not have much tearing per se, but I guess if your wife tears, it may be because the tissue is sclerosed in that small area, similar to what I had all over? Anyway, your thought process seems logical to me that if her tissue is very thin, she might have mal affects from the shots. Has she tried Kenalog ointment? I had two rounds of shots, about six each time (not very painful).
CommentTo Jennifer: Thank you for the reply. You mentioned exactly what I was thinking, maybe try the ointment first. I don't know, hate to repeat the same thing over but something happened to the skin in that one area. In addition to the tear in that six o'clock spot one of her labia looks kind of okay and the other is very small and adhered towards the bottom almost as if it is disappearing. Like I said she will see a new gyn. in sept. I think she may mention the Kenalog I just don't want her to get worse. Yes sex is important to us but as I have said sometimes she tears just moving a certain way. When she had surgery in an attempt to correct the tearing her gyn reattached some muscle tissue cut during several episiotomies. We thought that would strengthen the area but it is the very top few layers of skin that tear. Sorry to be so descriptive I just want to be clear. Thanks again.
Commentmariaeva....try dr. poliakoff in south miami. i have had some luck with him! karen
CommentSo, I just got back my results from Dr. Toth and it says I have some unusual bacteria called Actinomyces Israelii. In his note to me, he says it can't be treated with oral antibiotics. He also says he is not sure this is causing my pain but it is unusual--I love a guy who hedges his bets!! To the women who was being treated by Dr. Toth, please email me directly--I have some questions. Many thanks
CommentLia.....Were there any other side effects other than the sedative effect from the Neurontin? I am currently taking 40mg of Prozac(anti-depressant) and 15mg of Buspar(anti-anxiety), and one or two Oxycodone-5 APAP(Percocet) a day. I weigh less than 100lbs. and am 48 years old. I have had Vulvodynia for over eleven years now and have tried just about everything including four surgeries. My doctor mentioned the Neurontin as a possibility on my last visit. My family wants me to seriously consider this. I just don't know anymore what to do. Thanks!
CommentBasically, Satan doesn't wanna lose his power. This site makes all the lights in his 'house' go off. A blackout. And that's exactly what God's trying to do to oppose Satan, thus, to bring the Son back into the world. Dude... the MOST important decision of our Finite Existence is this: Where shall I spend my eternity? There's only 2 places to go after death and 1 of 'em AIN'T too cool. Check out my HUGE, killer URL (sign the guestbook): Hardcore, raw, rude, yet, quite benevolent if thou gots a brain... May God Almighty flagrantly bless you with massive discernment, friend, and may He fill your indelible heart with the fruit that'll never perish. Satan's nothing but a short, slimy 'tete du merde', America: That BigLoser lies like ROADKILL. DON'T be like sheep standing by in thy 'calm complacency' (Eze. 16) while our nation falls to destruction due to homosexuality and abortion. There's only ONE Supreme Being, folks, the Most Magnificent, Magnanimous Maverick: God Almighty. All the rest are idolatrous: Cars, clothes, cash, calumny, conDUMBS, or... that filthy noun for a female's genitalia. PEACE. LONG LIVE CHRIST the KING.
CommentJust what this site needed another person who knows "GOD" on a personal level and is willing to interpret for us. Please don't let this kind of post stop you from exchanging information. We are living in the here and now, none of you are being punished, none of you deserve this illness. My own opinion, if you pray to any GOD good for you that's great but don't stop voicing your symptoms to your doctors and loved ones.
CommentThanks Frank, you are right! And I wish there was some way for these posts to be screened before they appear. There's been some pretty disturbing stuff posted lately. Perhaps a filtering system for bogus posts can be implemented. I notice that it takes quite a few hours for my posts to show up, and I wonder if they *are* being read/screened/filtered or if the system is just slow?
CommentNext God or Thin Man post that shows up here should be followed by someone starting their next post with, "Anyway - back to my latest dr. appopntment information . . ." In other works, completely ignore it and don't waste space with an acknowledgement. That being said - I won't waste this kind of space again myself. Back to it - I have been wondering if anyone has been troubled by persistant Beta-Strep (vaginal b-strep) since the time of the onset of their other symptoms. Beta-Strep is a colinazation rather than an infection. Drs. say that it doesn't produce symptoms, however I find the considence of the presence of Beta-Strep overgrowth and irritation remarkable. Anyone else??
CommentIt is an interesting coincidence. I have been diagnosed with Beta Strep many times over the years, yet treating it with antibiotics never made my vulvar irritation symptoms get any better. Actually I think being on antibiotics/Flagyl/monistat for so long is what set my vvs off to begin with. I'm just hoping that some day my body will return to normal. In the meantime, I find topical Estrace and rinsing after urinating to be my best defenses against burning.
CommentThe question is - did the antibiotics clear, or significantly reduce the strep?
CommentYes, the cultures would be negative for B-strep for a while after using antibiotics. But it'd always return within a year. Symptoms always remained the same.
CommentTo Kathy... I was on neurontin for a matter of days and I was too sedated to continue. But I'm atypical! I take a relatively high dose of desipramine (150) with no problem. My doctor can't believe it because he says all his patients complain about desipramine and everyone (except me, apparently) tolerates neurontin just fine. I'd give it a try. Just go slow. Good luck! (PS I'm small too--115 lbs. In my experience with antidepressants and anticonvulsants, body weight doesn't seem to correlate to dose. I took 80 mg of Prozac years back for depression which is considered upper end. I know one woman who takes about a fifth of the desipramine I take and has her pain controlled. I think doses are idiosyncratic and individual. So... small person doesn't mean small dose. That's a personal beef of mine... I think a lot of people "fail" treatment because docs are afraid to push doses. Just a theory.)
CommentGuess what, I no longer have any problems with vulvodynia. I had been diagnosed with it almost a year and a half ago. My Dr. and I tried all of the things in which I see everyone trying, however none of those worked. I too have yeast infections at least 1 every 2 months due to all the sugar that I consumed, and urinary infections due to sodas and not enough water. The vulvodynia however was created by none other than good ole depo provera! Yes ladies the birth control shot. How did I find this out? Well I had to come off of it for 12 months. The pain started to subside 10 months after I stopped the injections. The moisture came back that we all need so badly in order not to have nerve irritation or inflammation (vestibuls). In that whole period of time I could not use condoms or lubricants with alcohol in them. So we used vegetable oil which was perfect and a vibrator to stimulate manually in order to get the maximum lubrication out of my body. If you can orgasm over and over until you are soaked it helps greatly. How did I not get pregnant? Well to be honest the pull out method and watching the calender to try to pin point the safer days. The male can stop before he gets the urge and then pull out and manually stimulate himself outside of you to orgasm. Then as time goes by when the pain decreases and sex starts to feel pleasurable again you can then use condoms. Be sure to lube the condom up with the vegetable oil as well, soak it in fact while it is on the penis. If you have any questions feel free to contact me. Good luck and I wish everyone well!
CommentGuess what, I no longer have any problems with vulvodynia. I had been diagnosed with it almost a year and a half ago. My Dr. and I tried all of the things in which I see everyone trying, however none of those worked. I too have yeast infections at least 1 every 2 months due to all the sugar that I consumed, and urinary infections due to sodas and not enough water. The vulvodynia however was created by none other than good ole depo provera! Yes ladies the birth control shot. How did I find this out? Well I had to come off of it for 12 months. The pain started to subside 10 months after I stopped the injections. The moisture came back that we all need so badly in order not to have nerve irritation or inflammation (vestibuls). In that whole period of time I could not use condoms or lubricants with alcohol in them. So we used vegetable oil which was perfect and a vibrator to stimulate manually in order to get the maximum lubrication out of my body. If you can orgasm over and over until you are soaked it helps greatly. How did I not get pregnant? Well to be honest the pull out method and watching the calender to try to pin point the safer days. The male can stop before he gets the urge and then pull out and manually stimulate himself outside of you to orgasm. Then as time goes by when the pain decreases and sex starts to feel pleasurable again you can then use condoms. Be sure to lube the condom up with the vegetable oil as well, soak it in fact while it is on the penis. If you have any questions feel free to contact me. Good luck and I wish everyone well!
CommentHas anyone ever tried Prelief? It neutralizes acid in foods and make them more tolerable to sensitive individuals. I am trying it right now. I have vulvadynia and foods really do contribute to my pain. Prelief is an over the counter antacid. Anyone have any luck with this or use it regularly? Will check back to see if anyone posts. Thanks
CommentBillie, you are certainly not the only one who got her symptoms from the depo shot. That's why it's so frustrating that there is so little knowledge about the risks involved with this type of birth control. I can't believe some women in other guestbooks who ask whether it's safe or not to go on the shot as a contraceptive since the pill gave them vv or vvs symptoms. Apparently their doctors recommended it! This makes me so mad I wish I could just go to their offices and slam some information in their faces how much pain has been caused by their ignorance. At least in the Nordic countries where I live it seems that all doctors/gyns care about is that women don't have unplanned pregnancies. As long as this doesn't happen it's fine to take whatever pill or shot, even if it's destructive to your body. What's so wrong about good old fashioned condoms? It's safe and easy to use, yet my gyn looks at me like I need to have my head examined when I explain I "still" use them at age 30.
CommentTo Miskes: If you and your lover agree to use condoms there is no problem, but speaking for myself I hate condoms. I have been married twenty years and always been faithful to my wife, the few times in our marriage I did need to use them were after pregnancy before my wife could resume birth control pills. To be honest I may sound spoiled but there is a loss of sensation and I would rather not have sex than use a condom. I had a vasectomy so that my wife could stop the pill and not go through surgery herself. I think in general men dislike the "feel" and maybe doctors don't think guys will use them faithfully in order to prevent pregnancy. If I could go back to the beginning of my relationship with my wife I would have had my sperm frozen in order to have children and my wife would never have taken any kind of birth control. I agree Depro Provera, the Pill could have contributed to the onset of Vulvodynia in many women.
CommentKaren, Thank you for the info.. I would like to know what type of treatment you did with Dr. Poliakoff? Did the treatment work and did you still feal pain? I just started taking Elavir. Thanks, Maria Eva
CommentSusan: Hi Thanks for the information.Sorry for my bad inglish,i speak spanish.I'm learning. The number for the test (gene)is:212-7463165?Do you have other information? Thaks.Bye!
CommentD: you are the ONLY person I have ever heard of who had a good experience with Dr. Stewart. Can you please tell me more about how you got good treatment from her? I hear so many horror stories about her (and had some of my own) and it would be great to turn those into positive experiences for other women. Anything you can tell me is mucho appreciado!! It's so great to read that you are doing so much better!! I remember reading some of your early posts so I know some of what you have been through!! Nini
CommentHas anyone had any success with acupuncture for their vulvodynia? If so, any leads in the NY/NJ area? My husband and I are researching this avenue on the web but there is not much to be found. Many thanks! --Lisa
CommentHi- I am emailing on behalf of a friend who was diagnosed with Vulvodynia. She is now pregnant and extremely worried about the medications she was using affecting the baby. Also, she is concerned about vaginal delivery.. does anyone have a story to share about being pregnant and having Vulvodynia, or about the birth of your child? I have not found much on the Internet regarding pregnancy and birth! Thank you! lthurston@arrow.com
CommentTo the last post: Your friend's obgyn should be able to answer the question regarding medication and the fetus. Chances are topicals pose less of a health risk than ingested. If you go back through the last five or so guestbooks you will read several posts regarding pregnancy and vaginal delivery. Doctors go along with H.M.O.s insurance and unless there is an overriding problem they will not give the woman a choice of delivery procedures. Give the folks here more information if you want a better response. For example what meds does she use? Is this her first child? Best of luck.
CommentI've been treated by Dr Monica Peacocke/dermatologist in NYC for vulvar pain and just wanted to put a warning out for others who might be referred to her. She's an absolute fraud ( and an expensive one at that, she takes no insurance). She's the pits - BEWARE!!!!
CommentI saw Monica Peaquack (oops I mean Monica Peacock) too. She was by far, the most disreputable Dr. I have ever seen. She is a rubber stamp practicianer and a horrible diagnostician. She only ever prescribes one regime--no matter what you've got. I actually considered sueing her at one point. Please, cross her off your list of resouces for this disease and your body will thank you
CommentHere is my 50 cents on pregnancy. Make sure you have an OBGYN that will do a c-section if you feel you need it. I have found that about 50% of people are fine even sometimes better after doing a vaginal birth and about 50% are worse. Not to mention that sometimes birth seems to trigger chronic vulva pain for some. You need to know before delivery time that the doc will do what you want if you become very afraid. Also, look up the medication in the PDR. They are categorized B, C, etc. The letters stand for if they are o.k. during pregnancy. This is what your doc is basically going by as well, you might as well get familiar yourself with these things, so you can double check him/her. Tertrogenic affects (affect on the fetus) are what you are looking for in the PDR or you can just get the insert from the medication. Frank, just wanted to say again that I had sclerotic tissue that Smithkline and Labcorb never picked up on in biopsy. I had to send the tissue to UF where there is an expert in examening vulvar tissue. I have a close relative with scleroderma, and her skin cracks open easily, especially on her hands. Anyway, I just cannot help making the connection that maybe your wife's skin is not thin, but sclerotic (stiff) so it cannot bend. Like a twig will snap apart, but rubber would just bend.
CommentLisa... I live in New England and I've had some relief from acupuncture. My recomendation: Go to www.vulvodyniasupport.com and look at the medical directory. I've been in touch with Lauren, the woman who runs this site, and she has had great help from her NY acupuncturist, Michael Gaeta at Hands on Health. He's on the resources page. Good luck! PS, to Nini, I'm another unhappy ex-Elizabeth Stewart patient. It's actually heartening to me that I'm not alone and not crazy. She gave me no hope and her nurse is a sadist. I'm doing better now with a doctor who believes I can be well.
CommentTo Lisa about acupuncture - I don't want to be negative, but I tried it for nearly 2 mths & have had to stop, as it actually made me feel worse in that it seemed to irritate my bladder. It sounds wierd, but I had a bad UTI 2 years ago with months of symptoms after even tho the infection had gone, & the acupuncture brought all those symptoms back. It took me a while to realise it was the acupuncture causing it (at first I thought it was the enormous amount of chinese herbs I had to take) & since stopping my bladder is back to normal. The treatment also had no effect whatsoever on my vestibulitis, altho the acupuncturist did say it would take about 3 mths to get results. But I couldn't live with the painful bladder thing in the meantime. It did help with PMS symptoms (sore breasts etc) but overall I wasted thousands of dollars on it. I'm not saying it won't work for others, & of course it depends on the practitioner (even though the guy I saw had a good reputation & was a genuine Chinese doctor), but just a note of caution. Also, it actually made me feel very depressed for the first few weeks, I was teary & lots of anger came out, which is meant to be good, but it wasn't much fun at the time & I nearly thought I was going mad! I was extremely heartened to read about Susan & the gene/Suma thing. This is an amazing success story & has given me so much hope of a cure for this thing. I am going to get tested for the gene, but I agree with the lady who suggested trying the Suma anyway, I can't see how it could hurt, at least it's natural & surely can't be worse than all the meds some people take. Has anyone had any side effects from taking it? Unfortunately it doesn't seem to be available here in Australia, I'm going to get it over the web from US. The only thing is I read on another website that it can interact with other medications like antidepressants so I guess you'd have to be careful with it if you're on other stuff.
CommentDo many of you with Vulvodynia also have IC? I was diagnosed with IC in April, but my discomfort/pain (besides the urinary frequency/urgency) is in the Vulva. And my clitoris feels "hyper-stimulated". Sometimes I feel like i have been kicked in the crotch & everything burns, aches is sore, etc. Also, how many have sacroilliac dysfunction/low back problems? Is there a connection? Should I go to a physical therapist or chiropracter? Thanks! Please feel free to e-mail me.
CommentA few questions -- Jennifer: what is UF? -- There used to be a woman here, Becky who was seeing Dr. Peacock. Becky, if you still read here, would you please post in reference to her? Thanks!
CommentDoes anyone know of any gynecologists in Columbus, Ohio who know about Vulvodynia and Vestibulitis?
CommentI need to know who can help me in the Salt Lake City area....thank you Wanda
CommentUniversiry of Florida is UF, sorry I was not clear. I live in Florida and of course think that everyone's frame of reference is the same as mine. I am sure there are other scientists who can specialize in these things. All I wanted to point out is that if your doc sends a biopsy to a commercial lab, the lab will look for what she/he specifies. It will probably be a guess like HPV. A specialist in analyzing these tissues will look at the tissue and report everything they see as abnormal. The guy at University of Florida was Wilkons or Wilkonson or Williamson or something like that. Dr. Betty Bellman in Miami was the person who sent my biopsy there. Jennifer
CommentIs there someone who has experience with the APS therapy in case of Vulvodynia? It uses "Action Potential Simulation" and is advised for many kinds of chronic pains.
CommentThanks Jennifer!
CommentHello, I am not claiming a total success, but I have been dealing with vulvodynia (not vestibulitis) for three years trying many, many different meds. I have had the terrible burning, itching, stabbing nerve pain, and general rawness almost non-stop. About three weeks ago I started taking 100 mgs of desipramine and using EMLA(a numbing cream) along with hydroxyzine and Elmiron for my interstitial cystitis. I am having great success with this combination. I am keeping my fingers crossed that it will continue. You can read about EMLA on the net for the specifics. I will go to Mayo's this sunday in Rochester for a full physical and hope to have some other feedback on why they think this is working for me. I thought I would never find anything that would work. I now have hope. Jean
CommentThis is an email I tried to send to Dr. Glazer but it was returned with a message that his email address had a "fatal error." I haven't seen alternatives to birth control discussed in a guestbook yet, but I would love it if others would share their knowledge with me. You're probably sick of getting "history reports" so I'll just ask my question and if you need further information then you can ask me for it. I've decided that the pain is less when I am off birth control (and think that it may have triggered my sharp and steady increase in symptoms but don't think it's the cause since my problems with peeing- painful urge to go but never able to etc. started when I was around 8 or so.) When it comes to sex (if I'm ever able to engage in it) I don't want to take any more chances than I have to. I was on the depo-provera shot for about 2 years just because it was .1 percent more effective than birth control pills. But the first thing they tried for my pain was to switch me to the pills. I tried Mercette, then was sick of being nauseaus all the time (plus I wasn't having sex since my boyfriend lived 12 hours away.) When I came home for the summer I had unprotected sex. It was hard to be mad at myself about it because for the first time it felt good. It felt good the next two times, then I realized I was being reckless, went in and got on Loestrin (whichever version has the least estrogen.) I waited until I got my period, waited another week to let the drug start working, and then tried again. It hurt and I was pissed. At least I got that one week. Damn, I'm ending up giving you a history anyhow. Well here's the question: If I can't use birth control then what do I use to prevent pregnancy (STIs are also a concern, but I have only been with my boyfriend of 4 years who has been tested several times and having sex with anyone else is not even something I want to think about right now.) Condoms are not an option. They hurt. I don't have much of a sex drive left due to the pain history, but if I ever am in the mood I would like to know that at least I was protected. Thank you
CommentTo Emily: Please don't get offended that a man replied. The birth control thing is a tough one. There are different condom materials so you might try that. I don't know how serious you and your boyfriend are concerning a future together but I'll tell you what I would do if I could turn back time. My wife used birth control pills for years before and after our children were born I think the pills added to her condition, anyway I would have donated to a sperm bank so that I could have a vascectomy and still have kids. I know this may not be anything to consider, right now you are not married and I would not blame your boyfriend a bit if he said no way. If you are considering all options then there is the scenerio where you have your eggs frozen and you undergo some form of permanent sterilization. All this stuff is extreme but the alternatives may cause you continued pain. Best of luck to both of you.
CommentEmily - Freezing eggs and steralization is ridiculous! (Sorry Frank, but be for real!) We already have enough problems with our bodies - so let's try some unnecessary surgery??!! Haven't we all learned enough here to realize that condoms are necessary? Can any woman here afford to expose herself to any more problems, infections, etc.?? A huge percentage of men who carry things like HPV and Herpes don't even know they have it. It's not their fault, but that's life. Emily - tell your boyfriend the condom comes off when the wedding ring is on!! (And yes, I know things can still go wrong when you are married, but at least, if everyone is honest you have the backup a a seriously committed relationship). Latex condoms in particular can be troublesome for women (including me) - try AVANTI brand condoms, they are polyurithane (sp?) and use LOTS of Astroglide lubrication. It's a really good brand, much better than KY and vulvodynia docs often recommend it because it doesn't have a lot of the chemicals that are troublesome for those of us with irritation. Ladies - In my opinion - if your boyfriend just really doesn't like condoms - he just really doesn't need to have sex! A little loss of sensation is nothing compared with what women who suffer with Vulvodynia have to go through! And just for the record, I have been off of birth control pills for 1 1/2 years now, and my symptoms are MUCH worse than when I was on the pill (Demulen 1/35).
CommentHmmm not quite the replies I was looking for. I'll clear this up now: it's not my boyfriend that has a problem with condoms (although he would prefer not to, I really don't care since I would prefer not to have a child right now.) I am the one that is hurt by them. While I may try Avianti like M suggested, I certainly don't expect that to be the magical trick. Astroglide was obviously the first thing I tried for painful sex, but no matter how much I put on, there is still that pain that makes it a horrible experience instead of an expression of love. I don't understand at all why my only pain free sex was that week inbetween birth control pills, but I feel that that is a sign that I should not continue to take them. If it came to sterilization then that is what I would do, but there would be no freezing or storing either. I take my vulvodynia as another reason why I should choose adoption. There are so many women who post on this site, what are you all using for birth control? Another question that I have is: What do you all use when you are on your period? I've always used tampons because frankly I really don't have a choice. Super plus tampons are painful (I figured out that they're not supposed to feel like that once I discovered what I had was vulvodynia), but they are neccessary. Does anyone know of tampons and pads that are made with materials that wouldn't irritate me further? And where can I get this Dr. Bronner's Soap that this site recommends for washing underwear?
CommentTo M: Ridiculous? Extreme without a doubt, but I am serious for myself I am so sorry my wife ever took any kind of birth control pill or shot. I was hoping someone else would respond after I wrote that post and I wasn't trying to be stupid. The few times I used condoms I hated the loss of sensitivity, we had no idea back then of the possible problems associated with the pill or depro. If a married couple can't use birth control and condoms are out of the question what is left? Granted if someone told me when I was twenty have a vasectomy and your wife can be inseminated I would have told them you are nuts! But seeing her suffer now because of all those chemicals would change my mind. Please don't consider the withdrawal method as reliable or practical. I was not suggesting mass sterilization of women with vulvodynia, that is a terrible thought. I just think before a person is driven to give up love making indefinately and suffer from depression they should have more options. What are the options beyond condoms and birth control?
CommentThank you both for your comments on acupuncture. Also, Lia - thanks for the comments about Eliz. Stewart. I am reading her book and thought she sounded great. I have had enough of HORRIFIC doctors to last me a lifetime....all of whom are in the NY NJ area.
CommentHi Ladies! I sit here in tears reading the suffering that is going on with this condition. My story: I have had an unexplained itch around my clitoris, in the folds of my labia, for 7 months now. I have been tested and examined for everything...all is negative. I went to a vulvar specialist who gave me topical oitment. It does help, but I want to know what is going on with me! I feel pretty good in the morning, then around midday, after I urinate (which does not burn or hurt) my clitoral area gets annoyed. The urine does NOT touch anything..but yet I feel the correlation of the "itchiness" after urination. My urine has been tested..all is clean. Is this part of vulvadynia? I am really getting obsessed with this. I hope everyone feels better soon!
CommentHi Lucy - There is a lot of good information here, take some time and read through some of the recent books. Though I have never tried it - the way you described your situation made me think of the oxalate theory. If you're not familiar with it check the National Vulvodynia Association's site and the Vulvar Pain Foundation's site as well. The oxalate theory is from a Dr. Clive Solomon. Maybe Laurel could weigh in on this? . . .
CommentIf you are afraid of birth control pills, because of the hormones, you are probably also afraid of the MEGA hormones you take to produce bunches of eggs for retrieval, let alone that the procedure is invasive, and you must take antibiotics for it. Not attacking you here Frank, I know your suggestion comes from caring about your wife, and the women on this site. I do agree that if you are past the age that you want kids, and are married, your husband should go get a vasectomy. My husband would rather jack off with the computer than use a condom. IUD is probably the most logical idea, no creams to be allergic to, etc. Here is a suggestion a lot of people will hate?I did not have sex 3 days before or 3 days after ovulation for years, and never became pregnant. When I finally decided it was time to have a baby, I got pregnant the first month I tried. In fact, I became pregnant 5 times out of the 6 I tried (before my surgery). I always got my period 14 days after I ovulated almost to the hour, my cycles were regular, and I knew I wanted children. Moreover, RU486 is now available in the states (I know there are people that will feel this is ?abortion used as birth control?) if you are regular you will know when the embryo is just two weeks and 1 day old. This is about health, pain, and sanity, taking a little risk seems o.k. to me. But remember I was very aware of my cycle so I was taking VERY LITTLE risk.
CommentTo Jennifer: We are here to exchange information and I myself am always learning. I don't mind being corrected when I'm wrong and it takes more than insults to hurt my feelings. I appreciate the smart ladies like yourself who give your time and input. To any guys reading this the vasectomy procedure is painless, recovery isn't too bad takes a couple of days and plenty of ice packs. My best to you all.
CommentI think Dr Solomons has a good concept with his oxalate theory. Many do respond to the low oxalate diet, while others need the citra-cal (he has to test your urine and time it for you, citral cal w/o vitamin D), and/or HTO, glucosamine, and Ox absorb. Some find they have to decrease or cease using the citra cal because too low oxalate level can cause the body to produce it naturally and burning resumes (yes, me!). Some dont respond at all to oral treatments, and some give up before seeing results which can take 1-3 years. Personally I take 3 ox absorb with each meal or 9/day to prevent total absorption of food and pass it into the intestine. Its all natural made from sea vegetation and I who am sensitive to all things, can take this no prob. It also aids in IBS, and constipation. I found great relief using it. I think those with colitis or intestinal problems will benefit, as it had reduce pain immensely due to my proctitis. If anyone out there has rectal symptoms, they may find that the proctitis (or colonic/intestinal dysfunction) is causing the v.v. Thats what I am finding out, so please urge you to get a full rectal exam as I have said many times before. Also, some find Ox Absorb does burn them, so I guess it depends on the individual. In the 10 yrs I have had this, I am just finding out that thats what was causing all of this thanks to Dr Davis. Too bad it took so darn long. Anyway, good luck to all, and if anyone wants to order Ox Absorb, its available through Needs.com. Also, seek testing through the Vulvar Pain Foundation and Dr Solomons, it may save you a lot of misery. Best to all, laurel
CommentHas anyone used Atropine cream/ointment? Did it help and what was the strength?
CommentJennifer- IUD is the conclusion I came to today, but I will have to research it further because the idea of sticking something in my uterine wall that will stay there for 10 years is pretty scary (the hormonal version lasts for 5 years, but obviously that would present the same problems as the birth control pills and depo-provera. I would love to be able to avoid pregnancy the natural/family planning way using a calendar, but I'm just not regular enough to be that in tune to my body's cycles. Laurel- At first I got some relief from citracal combined with the low-oxylate diet, but then it was back to normal. Do you think that maybe my oxylate levels are too low now? I do have rectal problems, or at least anal, but have never gotten to have a thorough discussion with anyone since I self-diagnosed myself with vulvodynia (this summer, after about 12 years of thinking that everyone felt like this.) So I obviously haven't had my urine tested, or the proper timing set for me. I talked to a specialist over the phone who told me to try the elavil, low-oxylate diet, citracal combo first. One to three more years?! Should I really stick it out or try to find relief with some other method?
CommentI was recently diagnosed with vulvodynia by Dr. Horowitz in CT, and he prescribed Neurontin for me. He said I had some kind of neurological disorder and that by taking this for about a year it should go away. Has anyone used this? And what were your feelings on it?
CommentTo Tiffany: I'll probably get yelled at for this but here goes. My wife saw Dr. Horowitz about two years ago. He asked many questions and said she had vulvodynia. Although when he examined her there was no visible yeast he said she had a full blown infection and prescribed boric acid suppositories. He wanted her to take Elivil, increasing dosages until as he said it would be ineffective. He said it would calm the nerve endings. My wife was suffering from a recurrent tear at the six o'clock position and still does. She did not want to take this medication because of all the problems associated with it, weight gain , drowsiness, etc..That doesn't mean some women haven't gotten relief from their symptoms using such medications. I myself have used neurontin for herniated disc related problems. Everyone is different and can tolerate drugs different. Consider your present health and best of luck.
Commenti am writing because i have seen dr. stewart since june and am seeing some relief. I have only been on treatments for a little over a month, but i am getting somewhere with it, but her nurse isn't very good-she told me she thought i had lichen sclerosis and to come in for a biopsy, i went in and dr. stewart was going to do it, but when she looked she said there was no reason to...i was really glad but at the same time really pissed because the nurse does not know what is really going on...i have had only bad experiences with nurse practioners and do not trust them at all, but dr stewart seems ok to me
CommentEmily, As you can see you haven't gotton many responses to your question about birth control. I can only speak for myself, but I think for most of us birth control isn't an issue because sex is out of the question. Regarding neurontin. I take it. It doesn't help my pain but it does help me sleep. I also have fibromyalgia and have problems sleeping. One of the reasons I think it doesn't help me is because I can't tolerate it in the really high doses you need for maximum pain control. In the smaller doses it really doesn't have any of the side effects as all the other drugs they give for vulvodynia.
CommentThat makes perfect sense. I don't know why I didn't think of that. Dr. Glazer says the ultimate goal of treatment is to be able to resume enjoying sex, but for women who have suffered for years just wanting to feel better some of the time is enough of a goal. I guess at age 19 I'm just not ready to admit to myself that I'm not going to be able to do the dating thing the way everyone else does. I've got myself fooled that I need to be on birth control when at the moment I can't even tolerate being touched. Thank you for explaining the obvious that I couldn't see though. About protection for periods (because I have lots of periods ahead of me) I found these sponges that you throw out every six months and, unlike The Keeper, they look like they would mold to your particular shape to avoid the kind of discomfort you would experience with something more than 2'' across. Anyone use these? I'll let you know what I think.
CommentTo Emily, re: birth control... I'm not advocating natural birth control because I myself haven't done it, but... a friend gave me a book called "Taking Charge of Your Fertility" by Toni Weschler. I think it's an amazing book. It really shows you how to know when you're fertile. It's helped me a lot even though I don't use it for birth control. A lot of the book is about using vaginal secretions to know where you are in your cycle. This helps me predict when my highly erratic period may arrive. And there's a lot in the book about what "normal" discharge is. At the risk of sounding really ignorant, I didn't know about how discharge changes cyclically. I've been very enlightened and reassured by this book. Maybe you should check it out. Good luck!
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CommentThis is horrible to be suffering from. I have the same symptoms and some worse than discribed. My Dr's never listen to me as I try to tell them that my symptoms come and go. I feel like it is some form of fungus as it always gets worse when sitting in the car for long trips or heat.Fungus loves warm moist areas. Dr's should look futher into fungus other than yeast and I bet we would all be cured as the symptoms are simular to jock itch. Yeast meds seem to dry and further harm delacate skin. Of corse when us girls urinate it would naturally sting and if it is fungus and they have not looked into that as the problem then we would never heal. I hope we find help soon as this is hard to deal with. Good luck to all
CommentHi, I'm suffering with vulvodynia and after reading through these guestbooks I'm astonished about how many different forms of vulvodynia there are. I'm looking to correspond via e-mail with people in my area (NYC, Westch., CT, north NJ) to exchange information regarding providers (the good & the not so good). I'm also looking to correspond with people whose symptoms are similar to mine: I've got vulvodynia, not much vestibulitis (tampons are not a problem but wearing pants is out of the question), burning, no itching, my skin is red & irritated, no discharge, cultures negative. My symptoms usually improve dramatically during my period. At the moment, I rely heavily on ice packs. I've had vulvodynia on and off since I was a teenager. There was a time in my early twenties where I was in pain every day, all day for 19 months. That was followed by 9 years totally symptom free. Please feel free to e-mail me. Looking form friendships & share information. Katy katydid917@yahoo.com
CommentKaty:I also have relief when I get my period. I haven't found anybody else who gets relief then, most people get worse during their period. I also have no discharge which is also a little unusual. How did yours start? Mine started with the use of a yeast infection cream, not the infection itself, but the cream. I didn't even know I had a yeast infection. I went for an yearly pap and they called and said I had an infection and to use this cream. I was always fairly sensitive and got irritated from time to time but nothing like that. That was 7 years ago.
CommentThis is my first post so bear with me. I am a 36 year old female who was first diagnosed with vistibulitis in October 2001. One day after urination, I discovered a large "fleshy lump" near my vaginal opening of the right labia minora. I went to the nurse practioner in my ob/gyn office who prescribed me an antibiotic. After the antibiotic there was no change in the size of the lump, and pain did occur during the exam. I then saw my ob/gyn who said I should wait until my annual pap exam because some times these lumps do disappear. Well, I had my annual pap test in Jan 2002 and it did almost disappear with no pain during the exam, etc so I thought it was nothing to worry about. Well, now I again have the lump - it came back as quickly as it disappeared. I also have the same redness and swelling that I had in October. The only thing my ob/gyn provided was something that would help with pain during intercourse. My ob/gyn has referred me to Dr. Hope Haefner at Univ of Mich. I had my appt on friday and will try to connect with Haefner this week. Here are my questions: 1. Is this "fleshy lump" a typical manifestation? I am concerned about malignancy. 2. Since the birth of my 2nd child in Sept 2000, I have had a reoccuring problem with constipation then diarhea - could this be related? I know it is a big no no to use laxative (mind you I am not addicted), but it is often the only way I get relief. Is problems with bowel habits related? 3. Over the years, prior to the lump discovery, I have had problems with "shooting pain" in my vagina. Frankly, it has occurred sporadically and it has never been something that caused me to miss work, etc. - But I wondered if this is something that others have experienced? 4. I feel fortunate in that I do not have the ongoing, chronic pain that some people describe. Yet, over the years I have noticed a problem with strong "pressure" when I lay on my stomach. I always assumed it was due to a full bladder, yet emptying my bladder did not provide relief. Any thoughts or connections? 5. Does the use of birth control pills increase or decrease symptoms? Interestingly, I did first have the symptoms only after going on a birth control pill (cannot remember the name!) that allowed me to continue breastfeeding my daughter. FYI - I am no longer on the pill. 6. Also after my second pregnancy, I developed a latax allergy. At that time, I had to switch to 100% cotton underwear, use of non latex condoms, etc - any connection? Also - does anyone know of good doctor in OHIO? My ob/gyn is a wonderful physician but says this condition requires a gyn specialist - of course this is scaring me too. Thanks for any help - tried to go to the chat room but no one was in.........
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CommentI wrote a few weeks ago about input regrading a botox shot. I had it two weeks ago as part of a research study my doctor is doing. She said it would probably take about 3 weeks to work but today, for the first time in almost 2 years, I had sex with almost no pain! Besides a bit of pain during the shot, there have been no side effects at all. I'm looking forward to week 3. Maybe there is some hope after all...Just thought some of you may want to know.
CommentEmily, I have had some improvement with the Natracare brand of pads and tampons. They are all natural, and not full of chemicals. Stay away from the Always brand, my own Dr. told me they are very allergenic. I feel they started my whole problem. I have lichen planus, but for the last 5 months it has been much improved due to my vitamin intake and also I did two treatments with the steroid cream and Cleocin cream. I talked to a holisitic doctor,and she said I should use Gynatren to put the good bacteria back in the vagina. I did that for a month and now I rarely have a symptom. Occasionally a little burning. I also switched to Seventh generation laundry detergent and it seems to rinse cleaner, and has no fragrence. I developed another problem though which I believe was from the use of he steroid cream. I broke out on the labia, along the hair line with what I thought was poison ivy. I suffered for 6 weeks, went to my doctor, and it had improved so much he couldn't say anything to help me. You know how you have to wait two weeks to get in!!!! We went on vacation it was fine, when we got back it flared up again, but I also walk 2 miles a day, and it has been very hot and humid this summer. So, I went back and he said it looked like a fungal infection of the skin or hair follicle. So now it is cloritrimizole cream combined with the steroid cream or two weeks. Always something!!! I just know the steroid cream that I used for my lichen planus caused this, but you know the doctors, they will never admit it. I hope this cream will solve it. I am 85% of normal for being intimate with my husband. I also take 4000mg of evening primrose oil for my skin, and women's formula which doesn't add hormones, but utilizes the ones you have in a favorable way. My skin feels marvelous with the primrose oil. I also have cut out all sweets, I think candida plays a role for me. I started taking Moducare which regulates the immune system, since lichen planus may be immune related.The holistic doctor says some doctors think that lichen planus is yeast connected. Thatis maybe why the Gynatren helped to control the yeast. Frank- I hope your wife takes evening primrose oil. I heard on a holistic talk show the doctor talking about skin tears and how EPO strengthens the skin. It wouldn't hurt her. I believe alot of our troubles are due to hormones in the 40 plus crowd. I am 41, and had my troubles start at age 39. Does she take a women's formula? I enjoy your opinions, keep posting.
CommentThank you Frank and Jennifer for responding to my post a week ago regarding my pregnant friend. Just a quick update.. she has transferred to a more receptive clinic and hospital and likes the new doctor. This doctor will be with her through pregnancy and delivery, and has said the choice is hers whether or not to have a vaginal delivery. This is her first child. If anyone has stories to share of a vaginal or cesarean after diagnosis with Vulvodynia, or an opinion on which she should do, please contact me at lthurston@arrow.com
Commenthi- I've had this for 2yars now.
CommentK - That is great news about the botox. Would you please take a few minutes and post exactly what your symptoms are like without the shots, how long it's been going on, etc ?? Thanks!
CommentTo Donna: Thanks for the thought, my wife started taking some vitamins again and I am very happy she did. I see no harm in checking out the E.O.P. oil. She doesn't have a skin condition that we are aware of, cuts and scrapes heal very well as does that recurrent tear I talk about. Whatever is causing the skin in that one spot to tear it is beyond any doctor who has examined her and there have been several. I don't blame her for bringing that fact to my attention. She is forty two and the endocrinologist said it was definitely not hormonal. Painful for her frustrating for me, I'm kind of an inquisitive guy I need answers and this illness has few to none. Glad you are getting some relief, best of luck.
CommentTo Ohiowoman: I had the bump you refer to. It was a Godsend in the end. I read the book "The Camera My Mother Gave Me" which is about the author's problems with her vagina. The second time I read it I caught the word vulvodynia in there. Eventhough she didn't think this is what she had I decided to look it up. And lo and behold on the list of symptoms along with burning, itching, stinging etc. was a bump- the only physical manifestation recorded yet for vulvodynia sufferers. That doesn't mean you have to have the bump to have vulvodynia, but for me it was the proof I needed that it wasn't just all in my head. Burning and itching I accepted as normal for so long, but the bump was just too weird to be ignored. The irritable bowel you talk about is also highly correlated with vulvodynia. I have that too. And feeling like you have to pee but you don't, yep that's another common one we share. You should really look this site over top to bottom and read anything else you can get your hands on. Educating yourself can protect you against doctors who are positive they have all the answers (the most dangerous kind.) If it is at all possible I would go to the U of M. I happen to live a half an hour away, actually on the list of professionals who specialize in this Chelsea, MI is 2nd (where I live.) Imagine I live in the same town as one of the few specialists in the world and I had no idea until I was going away to Massachusetts for school. That tells me just how much women are kept in the dark about this. Just a little tidbit to really make your vagina burn: I read in U.S. News and World Report today that medicare pays for penile implants. $20 million for 31,953 operations in the last 5 years. So when men can't get it up the reaction is "My God that's a travesty, man was made to have sex, that's just unnatural, we have to find a way to let him get back to his pleasure!" But when women who are in PAIN on a daily basis voice their concerns it's "It's probably just in your head, did you try lots of lubrication, you probably have an STD, probably HPV, I did detect some yeast, you should try relaxing, don't tense up it will just make it worse, you're probably causing the pain by expecting pain, don't stop having sex then it will just hurt even more." I hope vulvodynia doesn't turn me into a man-hater because I'm getting closer every day and every time I read about the shitty deal we get sent. If this was penildynia there would already be hundreds of researchers tackling the problem with a cure fast on it's way. As if I wasn't bitter enough before my vagina turned against me. I'm grateful that I at least have somewhere to vent where women like me understand what I am saying more than any best friend ever could.
CommentI'm glad Emily mentioned "The Camera My Mother Gave Me". It's a wonderful short read about a woman's battle with our condition. It's very informative, yet peppered with wit and whimsey. I highly recommend it.
CommentFor anyone from Australia who is interested in trying the SUMA (Brazillian Ginsing) that Susan mentioned, it is unavailable in Australia & you can't even order it from the US. I tried everywhere but it has not been approved yet for use here. Apparently the closest herbs to it (same family) are Black Cohosh or Sasparella - I am trying the latter 3x day. Susan (or anyone else who's had success with the Suma) - can you please clarify whether your pain was due to burning etc, or pure vestibulitis? Does the Suma help when it's purely pain with intercourse? Has anyone else been tested for the gene that Susan talked about? My doctor doesn't know anyone in my area who can test for it. I don't understand why the Suma only works for people with the gene. Thanks.
CommentEmily, I cannot believe what you read in U.S. News and World Report! How upsetting. I think many chronic pain sufferers with no outward signs are tortured by doctors, friends, and relatives that "question" the validity of their pain. Let alone people just do not want to hear the same complaint for more than three days. One thing vulvodynia did for me was make me a better listener and friend to people who suffer daily. I agree, it is easy to start hating men through this whole thing, but I hate the doctors more as a group. Since they are scientists, they are trained not to believe anything until it is proven to them, a double edged sword.
CommentTo Emily: Great post. Please don't hate men, change us! I'm a son, husband and father of two daughters. Why should women pay more for clothes and earn less for the same work? There are plenty of men who see the double standard. I've been writing here and pleading with my wife to challenge the doctors. Don't let them drug you into silence, demand answers. I also think if there was a male equivilent to vulvodynia the reasearch would be very agressive. The men with many sexual conquests are macho the women are looked down upon for the same thing. Many battles to be fought for equality, this one is a good one. I hope I'm wrong but I think with all the food additives, pollutants and prescription medicines pushed on women the number of sufferers will increase. There would be plenty of men with complaints if we had to trim pubic hair and use chemical deodorants on genital parts. The advertising industry has drilled into the publics minds that women need to have perfect skin, slim bodies with big breasts and no feminine odor. Has any of that improved a woman's health ? I'm constantly trying to deprogram my daughters from this brainwashing. If more women stuck together and did not buy into this crap the advertisers might lighten up and go after us guys. This stuff bothers me too!
CommentHi Krissy, In response to your post about Dr. Stewart (below) , may I ask what treatment she is providing you? You mentioned that you are experiencing some relief. Many thanks! Email: KRISSY42042@AOL.COM Date: 8/9/2002 Comment i am writing because i have seen dr. stewart since june and am seeing some relief. I have only been on treatments for a little over a month, but i am getting somewhere with it, but her nurse isn't very good-she told me she thought i had lichen sclerosis and to come in for a biopsy, i went in and dr. stewart was going to do it, but when she looked she said there was no reason to...i was really glad but at the same time really pissed because the nurse does not know what is really going on...i have had only bad experiences with nurse practioners and do not trust them at all, but dr stewart seems ok to me
CommentI just read your post re: Neurontin. I was just prescribed this medication by Dr Moldwin in Long Island (nice guy but the office is a disaster - I waited 2 hours for a cystoscopy after driving 2 hrs to get there (on time) and then was told the equipment would not be ready for another 1/2 hr because one was broken and it was being shared between two doctors! - I walked out without having the procedure. I then wrote him a letter after he called to see why I left. It was very empowering to leave I am tired of being treated like garbage by doctors I don't care how 'expert' they are or what their reputation is.) Anyway, I am on about 800 mg Neurontin now and maybe seeing some improvement. He said it is not that it takes a long time to work but it may take a while to find the right dosage that works for each patient. So I am being patient and will see what happens. No side effects yet as far as I can tell. I am hopeful about this treatment. I do think it is important to see a doctor that is an expert in this treatment so he or she knows how to ramp you up the right way. Good luck to all of us!
CommentFrank- I think the evening primrose would be beneficial, maybe it would strengthen the skin for her and it wouldn't tear. I guess anything is worth a try. My doctor tells me also that it isn't hormonal but I don't believe him. I tell him I miss a period, or go 44 days between, something I never did in my younger years and he says it isn't hormonal. There is such a thing as perimenopause, and hormones start changing. I have a friend in Holland who is a Doctor and she says that my condition lichen planus is often due to low estrogen. So go figure. That is never said by my Doctor. My husband is so supportive to me like you are Frank to your wife, but I know it is hard for him to cope with all of this, but he never complains.I don't think a lot of men open up and talk about it either. Does anybody have any idea about how to get rid of a fungal infection in the groin area( Women's version of jock itch) without using steroids and chlortrimazole cream? I think it was brought on by my use of steroid cream for my skin condition, exercising in 96 degree , humid weather. I have used the cream the doctor prescribed for two weeks , but it doeasn;t seem to be totally gone in one spot. I was thinking of tea tree oil as a solution.Any advice would be appreciated.
CommentHas anyone out there experienced tortuous itching after having oral sex.My man has no infections in his mouth and since this occurred about two weeks ago I took diflucan which if anything made things worse.I decided that there must be bacteria in the mouth which is not friendly to the vulva even ehen oral infection is not present.I decided to use a very dilute solution of mouthwash to bathe my vulva in and ive had alot of relief from the pain.The cold sensation definately helped.Anyone had anything similar?
CommentAfter having oral sex I had the most tortuous itching .It started about 9 hrs later and has driven me crazy and made me feel very down.Inspite of being told to the contrary ive decided that there must be bacteria which live happily in the mouth which the vulva doesnt like.I took diflucan which im sure made things worse.I decided to use a very very dilute solution of mouthwash to bathe my vulva in and this has taken the intensity off the itching.Things are not better however .This is only part of my story unfortunately as ive suffered from vestibulitis and urethral syndrome previous to all this.If I had to think of things which may have started this originally I would have to consider sperm allergy ie my partners semen would literally burn me,repeated BV for which I had to take Flagyl for many years ,oral sex,and possibly having intercourse before I was ready and allowing it to go on ,.longer than I wanted.Like many other women I used lots of anti fungals and these may have played a part.Has anyone else had problems after oral sex?
CommentTo Maddy: Just because your man doesn't show signs of an infection in his mouth does mean his mouth is germ or bacteria free. Even in a healthy mouth there are huindreds of different anerobic bacteria. Politely request he rinse with listerine before and after oral sex, can't hurt. Regarding the burning after ejaculation this is a very common result.
CommentTo Donna: I don't know if your insurance would allow but an endocrinologist could better tell you about the hormone levels. The doctor my wife saw said having a period was a good indication estrogen was sufficient, he took a blood sample then did a cell scraping from her vaginal wall on a swab. He said the swab test would show estrogen at the site as opposed to circulating in the blood. Maybe some day we will get better answers.
CommentRe: Oral Sex - Here is a crazy story that is actually the reverse of what has been discussed above. I just thought it would make a good point about how bacteria effects some people and not others. A few years back I had a friend who never wore underwear. I always thought that was nuts - we live in the city and just the idea of going around in the summertime, walking around city streets, in a skirt - God knows what you might kick up and expose yourself to. Anyway - she got into a new relationship which apparently oral sex was a big part of . Though she never had any trouble at all herself, her boyfriend developed a nasty rash around the inside edges of his mouth! His doctor, through lots of questions, actually figured out the problem and gave them both meds to clear the infection. That was the end of that. So, if it works that way - I'm sure it can go the other way as well!
CommentOne more thing - I've heard that Glabrata yeast is more common to the mouth than Candida yeast is. If you have Glabrata, Diflucan won't do a thing to help you - you would need a prescription for Nizoral. Ask you doctor to culture you for atypical yeasts!!
CommentJust FYI Torulopsis glabrata, usually reffered to as T. glabrata, is synonymous with Candida glabrata. It is different than Candida albicans, but it is all Candida. Some are more resistant to certain meds, true, but I thought you might want more info, so that when you talk to doctors you know what you are talking about. Check the web for more clarity.
CommentAlso, just to reinforce what M is saying. Two people can have the same infection and one might have no symptoms, and the other be VERY ILL.
Commentmy name has showed up connected to this website through a search engine, please Dr. Glazer remove me. also this is a very personal info we are sharing. isn't there a way to keep this info off the search engines? Please Please remove me! i am linked here Name: Miri Email: take out the stars and that is my email *k*e*e*t*v*u*l*e*e*@*h*o*t*m*a*i*l.com: 6/4/2002. Comment. ... www.vulvodynia.com/guestbk19.htm - 101k - Cached - Similar pages
CommentHi,Are you sufferring from Herpes, HPV, HIV, HSV,AIDS or something and feel lonely ? Are you eager to meet new STD friends for romance, dating, friendship in your city or all over the world? You will find that all right here.And you will never feel alone!! Just check it out!! http://www.positivesingles.com
CommentHey Audrey, if you are a real person do you have any idea of the nature of this site? The women here are in pain, suffering. They are not discriminating against people with S.T.D. , but they don't need a dating service. Please go take up room somewhere else.
CommentHey Adrews,this site is serius.Please leave. En este site nos ayudamos mutuamente con nuestra enfermedad, no es para que lo uses comercialmente en tus intereses.
CommentAudrey : here we are bad,in alot pain.We need solutions , no your date services.
CommentTo OHIOWOMAN...I ,too, am from Ohio! I have same symtoms as you. I have never had itchng with my burning and pain as others do. If you find a good dr in Ohio who possesses knowledge of these vulvalar disorders, please let me know. To EMILY...I totally agree with you! I am so sick and tired of research being done on male disorders while female problems are left on the backburner. I cannot tell you how irate I was when I heard about the invetion of Viagara! There are so many more horrible diseases and unkown "syndromes" out there on which to be spending research money. I am to the point where if there is such a thing as reincarnation I want to come back as a man!!!!!!!! I have developed a severe phobia of doctors, especially male doctors. You go in with a problem and they think you are either pregnant, have STDs, or are crazy. WE ARE NOT CRAZY!! Noone goes to bed one night deciding they are going to wake up the next day deciding they are going to have a burning painful vulva and/or vagina. I am fed up with th treatment I get from doctors. I am tired of feeling as though I am nothing more that dirt under their shoes. Tired of leaving a doctor's office more depressed than when I went in. "You seem like a very stressful high-strung person." Of course I am! Who wouldn't be when they have chronic pain and cannot sit for more than 20 minutes! (I am standing as I write this)! To MIMI...I agree with you. Health websites of such a personal nature where people express their feelings and symtoms should NEVER be allowed to show up anywhere else. It is an invasion of our privacy. Now if someone gets on this website and reads this stuff, fine. But for our names to show up elsewhere with these posts is sickening. I hope someone can do something about this !
CommentJust for the record - M. is of course not my name. Everyone should start using an initial or something else - just so we can follow each other's posts with some ability to identify each other. Go to hotmail - make up some dumb address - don't use your real information - and you're in business!! I would never even post my first name here, let alone any e-mail address with which I can be identified!!
CommentBenell, Thanks for saying what you said about Viagra. I too was horrified and pissed off when Viagra came on the market. I couldn't believe that I was suffering from this 'unknown' painful and debilitating disorder and researchers were spending their time and money making sure some 80 year old can get his 'bleep' up! Its easy to be angry about it but truthfully I was hurt and depressed about it. It made me feel as though my problems, my pain, just are not important to anyone. But we can't give up -- there are those few that care and we have to search them down no matter the cost.
CommentThrough the vulvodynia listserve I have received lots of information on magnesium, and how it might possibly be connected to vulvodynia. I'm not sure if I buy this, but the symptoms of magnesium defiency fit me well enough for me to be suspicious. I'm wondering, if calcium prevents the absorbtion of magnesium then why would citracal be the initial thing that many doctors try? Taking citracal gave me unbelievably painful constipation and I read in the FAQS part of this website that taking magnesium oxide would clear that up. It did, within a day. I'm starting to suspect the citracal may be doing more harm than good. I'm also on elavil. I'm up to 75mg and haven't seen lasting improvement. Dr. Reed, the specialist here says some people have to go up to 200mg, but isn't that the dose prescribed for depression? I'm already taking 150mg of Effexor for depression and have been for 4 years (except the dose was doubled to 150 just recently.) It seems to me that if elavil was going to work at all I would have seen some improvement by now, but I don't want to give up prematurely on a drug that could alleviate my pain in the long term. I'm also trying to follow the low-oxylate diet, but I haven't been able to find anything in writing describing it. Dr. Reed's assistant told me to not eat chocolate, spinach, tea, rhubarb, nuts, wheat bran, beets, or strawberries. But I have heard many of you refer to the low-oxylate diet and then go on to detail all the foods you avoid, which is a lot more then the 8 I have listed above. If I cheat every once in a while am I negating any positive effect I would receive from the diet? I completely abstained from those foods for about 3 weeks, but then so much shit happened and all I wanted was chocolate. Since then it's been a little snippet there and a chunk here. Does white chocolate count? Do peanuts count as a nut since they're not technically a nut? Sorry for all the confusion, but these are questions that have been building up and since I don't have a physician or specialist to consult on a regular basis I've just been trying to figure it out for myself.
CommentFor Emily: I would suggest joining the Vulvar Pain Foundation. They have a wonderful and informative newsletter and their low oxalate cookbook gives great recipes, as well as foods to eat and avoid (located in the back of the book low, medium, to high oxalate). What you have to do is to test foods yourself, because some have no problem while others agonize for days. Everyone's reaction is different. To answer your question, I would avoid chocolate altogether. As for nuts, they are troublesome, but some find they are able to tolerate walnuts (the amount of foods makes a difference too, dont overdo it). Be your own detective! There are a ton of foods on this list too long to describe, but I did list most of the books in an earlier guestbook if you have the patience to go through them all. As for magnesium, I found relief also, but cannot tolerate something in it as I am chemically sensitive with the fibromyalgia. Perhaps it is suggesting that you have a gastrointestinal problem that exacerbates v.v. symptoms. Be especially aware that those with IBS or some type of stomach ailment, especially the left side of the abdomen, or left sided v.v. may take this into consideration. Making the link, I have improved conbsiderably taking the Ox Absorb (prevents complete absorption in the intestine) instead of the magnesium with just as good a result. Hope this info is helpful. Had I known I had proctitis (they told me it was IBS, as the symptoms do tend to mimic one another) before last year, I am sure that I would have been vastly improved by now as I have been with this for 10 years now. Essentially what is happening is that foods consumed are irritating the lining of the intestines, and causing swelling, redness, and inflammation, which, in turn is pushing on my vaginal wall, and causing burning on the left side of my labia, sometimes right side too if the flare up is bad enough. Some have no idea they even have a problem. If Dr Davis hadnt done a rectal exam, I would still be in agony 24/7. I do have flare ups here and there, but they are usually quick to pass, and tolerable. Best of luck all! laurel
CommentI do think I have IBS and my pain is on the left side. In fact my anal pain used to be worse than my vulvar pain, now it all burns. I have an anal bump like the bump I had on my vulva (which gradually disappeared once I started taking the elavil.) I've just never said anything about my anal symptoms because, frankly, I thought going to the bathroom was painful for everyone. So you're saying Ox Aborb instead of the magnesium oxide?
CommentEmily: My mistake was that I thought the vulvodynia was aggravating the anal symptoms, when in actuality it was the anal pain creating the vaginal pain. When I learned this, I was able to read up on colitis, IBS, and proctitis, and Dr Davis putting the speculum inside saw all the irritation. I never even mentioned the rectum the first couple of times I went because I thought it was the v.v. causing it. When I told him, I had rectal pain, he did the exam, and voila! He said proctitis causes v.v. a lot of times. Its so important to mention even the things we dont think could trigger it. I strongly suggest having an exam just to rule it out. These stomach conditions can be caused by candida, yeast, or antibiotics. Dont ignore the anal symptoms. I find OX Absorb to be very helpful, but if you are ok w/ magnesium, do take it. By the way, magnesium helps colitis and proctitis, so do check it out, you just may have irritation in there. Best, laurel
Comment7 months and counting..waiting for this itch in the folds of my labia around my clitoris to go away. I have been tested for EVERYTHING...went to Dr. Marinoff at George Washington University. He said I had vulvae pruritis and prescribed Triamcinolone ointment. It helps..but I know it is merely a band-aid for the problem. I am 42. No kids..no meds -only progesterone cream the last half of my cycle (by prescription!) for the last year. I lived on Monistat in my 20s and of course, used the diaphram and spermicides in my 20s. I am horribly allergic to all that stuff now! This is my question: I am a herpes sufferer but my Acyclovir has not helped getting rid of this itch so I know this isn't an outbreak. I am NOT red, raw, nor have sores...just itchy with an odd clitoral sensation at times...and a feeling of puffiness on my right labia...BUT IT IS NOT SWOLLEN!. I am on unscented EVERYTHING...white undies..but my husband switched us to TIDE UNSCENTED just before this itch started. I had only used All Free& Clear...of course, we tossed the Tide once this started Does anybody think this is a flare up of the nerve endings due to the brief encounter with Tide Unscented...or could this be the herpes without the sores? I am at my wits end. Any comments...please send to my personal email. I hope everyone feels better soon.
CommentLaurel and Emily: Thanks for all that great information - I'm right there with you guys!! My pain that is related to IBS is lower right quadrant though, not left. I was diagnosed with IBS 15 years ago, and while not perfect, it didn't really take a big toll on my life - until now!! Funny thing is, two day ago I bought Magnesium sups. myself. How high a dosage do you find helpful? Also - just started using an herb called Marshmallow Root. I'm taking caps now, but will buy bulk root this weekend to make a tea. It's an old root very commonly used for inflamed mucus membraine. It's been researched and approved my Germany's Commission E (I think that's what they are called), which tests the effectiveness and safety of herbal meds. Cooking the root and adding sugar to make throat losenges is actually were Marshmallows (the candy kind) came from. There is tons of good information about it on the web - do a search. It is supposed to be excellent for IC as well. I'll let you know how it goes. Also - tomorrow I will pick up a prescription for Traumeel suppositories. (Do a search on Traumeel as well and see what you think) It's another antiinflamatory and a compounding pharmacy is making them for me in a non allergenic base. They make them specificly for women with symptoms like ours, but you do need a prescription. My doc has used them for a few VV patients and has had very encouraging results so far. I will use them for 10 weeks while I am carefully monitered. There is always a new treatment on the horizon - so there is always hope!! .Name:
Commentthanks M: I will look into your info. I do love and appreciate the info sharing! Will post if any new leads come up!
CommentThis is my first posting on this website. I stumbled across this site on an internet search last week and now I finally feel like I'm not alone. I was diagnosed with vulvodynia 3 years ago. After the initial onset of pain, I saw many doctors and was prescribed one medication after the other (for yeast infections, bacterial infections, tricylcic antidepressants, lidocaine, Aldara - essentially the entire kitchen sink). I finally found a physician who recognized the problem as vulvar vestibulitis. I opted for the sugery and had a vestibulectomy 2 1/2 years ago. Until 3 months ago, I had been living pain-free. Now I am having inflammation of additional vulvar tissue and I'm miserable! I cannot have sex with my husband (of 3 months) and I'm again having burning pain every minute of the day. I feel like I'm cheating my husband out of a normal sex life. I see people walking down the street and think how lucky they are, as they can probably have uninhibited intimacy with their husband. I know this is irrational, as no one has a perfect life, but it still is a struggle. Today my doctor prescribed me estrogen cream, so that is my next attempt to feel better. He said it will take at least 4 weeks to get any results. Has anyone else had success with this? Not for a minute to I regret having the surgery, as it gave me 2 wonderful years and I have no visible scar tissue. However, this current pain is devastating, as I now realize that this will be a chronic battle. I am writing now in the hopes of just talking to others who have this problem. Aloneness is the worst thing and I'm so grateful for those of you brave enough to share your stories. Thank you so much for your candor! Kari
CommentThe estrogen cream will probably work for you! I had the same symptoms as you, and since I've been applying Estrace topically for 4 months (to the vestibule only~~not internally), my pain is almost gone. I got 50% relief within 2 weeks, and it just keeps getting better every month. I can finally have pain-free sex with my husband again. I had tried everything out there for 3 years, and finally I found this board and read up on Estrace and got the Rx from my doctor. Thank God I did! I hope it works for you too!
CommentThank you so much for the response about the Estrace. It finally gives me some hope! I will let you know how it works...Thanks again!
CommentI have tried everything I can think of for this problem, nothing is working, the floor exercises, the estrogen creams, antifungal meds. etc. Some days are just unbearable, other days bearable, I pray alot for patience, and I thank God for an undrstanding husband.
CommentJoyce, I wanted to respond to your post! I was just diagnosed with vulvodynia and I am on my first treatment for it. My dr. is treating me with clobetasol for six weeks with one week breaks every two weeks. Did you ever try that? I have not had any improvement yet but like you I have unbearable days and others are pretty good! I thank God for every good one too and for my VERY understanding husband! He is a true gift from God! He never ever pressures me about sex even though I know it's been hard on him! I hope you get some relief soon! Hang in there andGod bless you Kathy
CommentKathy, I sincerely hope that you have success with the clobetesol cream, but I would feel terrible if I didn't share my own experience with that treatment. I recently used the clobetesol for 1 week (twice a day) then another week (once a day). I waited a month, then used it again (twice a day) for almost a week. Essentially this was only 3 total weeks of treatment. It improved my symptoms significantly during the first two weeks I used it, but during the most recent use I developed thinning of the skin. This has made the condition so much worse and I really wish that I never used the cream. Now I'm dealing with inflammation that is twice as bad as I started with. I don't know if other's have had success with this treatment, but my experience has not been postitive. Clobetesol is the strongest corticosteroid available, so it has great potential benefit (and potential adverse reactions) due to the high potency. You should do what you feel is the best decision for you, but I just wanted you to be informed about the possible side effects. Have your doctor monitor you closely. I exhibited no thinning after the first two weeks, but the third week was where the problems erupted. I hope you find an answer to your pain...my thoughts are with you... Kari
CommentHi, have a great week, come sign my guest book http://1homepage.homestead.com/index.html
CommentHi everyone I have had this problem for over 3 years.Since I have been on Elavil 25mg a night and low oxalate diet I've been doing so well. But to tell you the truth I think the low oxalate diet what helps me.Because if I eat chocolate it flares it up.I hope everyone finds a solution to their hurt. I know what everyones going through.
CommentHi Kari, Thanks for sharing your experience about clobetasol with me. I have been using it for 1 week now and it has not help- ed at all. I will keep an eye on things to make sure they do not get worse. My dr. did tell me that it can thin the skin and make the problem worse. That's why he wants me to take breaks every 2 weeks and he talked like he wouldn't prescribe it again after I was finished with it. I am trying other things on my own, like calcium citrate and I might try that diet everyone talks about although I have NO will power and it's hard for me to stick with anything! But if it helps with the pain I'll do it! Thanks for the advice and I hope you are feeling well! God bless Kathy
CommentAfter being married for seven years and never being able to have sexual intercourse, I was diagnosed with vaginismus and vestibulitis. Dr. David Foster of Strong Memorial Hospital (Rochester, NY) put me on desipramine and gave me lidocaine cream, neither of which seem to do anything for me (I only have pain/difficulties when attempting intercourse and have no other health issues). After he saw me three times over the course of six months, he referred me to a physical therapist. A year later, I do not feel that anything has changed. I have considered seeing the two doctors who run the Women's Therapy Center in Long Island, Dr. Ditza Katz and Dr. Ross Lynn Tabisel, yet their intensive two-week clinic is extremely expensive. If anyone out there has any information about them I'd appreciate you passing it on. Thanks.
CommentTo Lorie: Since you are willing to go to Long Island, NY you might consider seeing Dr. Benson Horowitz in Hartford CT. Give him a call and see if he is familiar with your diagnosis. Best of luck.
CommentHas any one ever used replens? It is a vaginal moisturizer that you insert. It is helping me tremendously with the burning pain both interior and exterior. My doctor had me use estrace internally, but I had terrible burning with that product. The replens is an over the counter product that can be used as often as needed. I am very sensitive to EVERYTHING and this doesn't cause me any stinging and it lubricates the wall of the vagina. After a while, you only need to use it 1 or 2 a week. I hope this helps someone.
CommentReplens will likely cause excessive thick grayish discharge that can be alarming to some women. It's not harmful at all, but be warned that you'll probably need to wear a pantyliner after using it. Also, why did your doctor have you use Estrace internally? Most vulvodynia patients (like me) apply it only locally to the inflamed vestibule/vulvar areas. Menopausal women insert it to relieve vaginal dryness and thinning of the skin. Inserting it really wouldn't help vulvodynia symptoms. I'm sorry you had burning with Estrace. Did you look into getting your prescription compounded in a non-burning base like vitamin E? There's lots of info about that on the internet. Good luck!
Comment
CommentJust wanted to say I tried Amitryptiline (generic for Elavil) and it worked for a little while. After I went up to 25 mg and then 50 mg I gained weight, was constipated and therefore ended up feeling depressed. So much for it being an antidepressant. Now I'm doing a homeopathic approach. My homeopath has said that I need to avoid sugar, breads, and dairy which affect thelevel of yeast in my system and also the digestive process. Although I have tested negative for STDs in traditional Western medicine tests, he said I have herpes and gonorrhea in my system which I either inherited from my parents, or got it through intercourse. We're dealing with those STD's right now. I improved a little (had sex twice, once for 5 minutes, and then another time for 10, which is pretty good for me) but he said it may take up to a year to get rid of the stuff in my system. I'll post again if I improve. Hang in there, everybody!
CommentRe: Replens My doctor prescribed Estrace to be used both internally 1x weekly and on the exterior. I felt much better and had much more lubrication when I used the Estrace internally, but I couldn't tolerate the product. I can't even tolerate vitamin E applied to the skin, that's why I feel that the Replens is such a help. I know that my pain is connected with foods also. If I have coffee or high acid foods etc... my pain flares up. There is also a hormonal component to my pain. When I have my cycle, I feel fine. I have read that there are other women with my symptoms, others have more pain during this time. I have had improvement since the onset of these symptoms, so I am grateful, but I pray that one day it will disappear just as quickly as it came.
CommentHas anyone had any experience (positive or negative) with the following center in NY? Your feedback would be most appreciative. Thanks! The WOMEN'S THERAPY CENTER , Devoted To Women's Physical and Emotional Health. The doctors are: Ditza Katz, PT, Ph.D. and Ross Lynn Tabisel, CSW, Ph.D. and they are located at 54-A Sunnyside Blvd., Plainview, NY. Thanks.
CommentHas anyone had any experience (positive or negative) with the following center in NY? Your feedback would be most appreciative. Thanks! The WOMEN'S THERAPY CENTER , Devoted To Women's Physical and Emotional Health. The doctors are: Ditza Katz, PT, Ph.D. and Ross Lynn Tabisel, CSW, Ph.D. and they are located at 54-A Sunnyside Blvd., Plainview, NY. Thanks.
CommentJennifer: I am curious to know what exactly th IV antibiotics are (i assume IV means intravenous)How long/often did you have to have them?Did you say that DR Toth had a website?What is the address?I feel my problems are due to either yeast or bacteria.For years I had BV infections almost every month with my period so not only was I itchy with bladder problems but also felt very smelly.I took tons of flagyl.Incidentally did all the antibiotics you took cause you to have yeast infections? Now I have vestibulitis ,itching and bladder problems and of course depression!!!It just doesnt make sense that something so damn painful doesnt have a logical cause. Thanks Maddy
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CommentA GOOD NEWS STORY!! I was able to have pain-free sex today for the first time in over 2 years and consider myself 'cured' of vestibulitis, if in fact I ever had it to start with! This is written to anyone out there that just has the painful sex part of vulvodynia, not the burning vulva, thin skin etc, (which I believe is a different condition altogether). I want to warn anyone diagnosed with pure vestibulitis that you may not even have this! I now don't believe I ever had it to start with. There are many other reasons why sex can be painful, as in my case. In brief, my 'condition' has been cured in just 3 weeks by the simple use of a vaginal dilator every night for 10 minutes! I urge others like me to at least try this out! You can go back to earlier posts & read my story; basically I had to use dilators years ago when I was a virgin, as I found penetration too painful & the gyno could feel a hard 'ridge' inside the hymen. After using the dilators every night for several weeks (starting small- finger sixe & working up to penis size), I was then able to go on to have normal, painfree sex. After a break from having sex for 1 year when I was single, I then started getting a vulval & rectal itch, & discovered the pain had returned when I attempted sex; I went to a different gyno than the first time (who was meant to be the best in my city), who diagnosed me with vestibulitis after doing the q-tip test. When I told her of my previous history with dilators etc, she said that was not connected & was something different, she was was so negative & said it may not ever be cured, I used to cry after seeing her. Well she was wrong!! I went back to my original gyno a few weeks ago (on a hunch) who said her diagnosis was wrong, to forget it completely - he said you could poke any woman with a q-tip around her vagina & it would hurt somewhere. He examined me & said it felt the same way it did when I was a virgin, just a bit tight, & gave me the dilators to use again. I was a bit doubtful, as having been labelled with the horrific VV diagnosis & having been through hell by the other doctor (painful STD tests, estrogen creams, steroid creams, medications) as well as trying acupuncture, natural herbs, etc for the past 2 years, I couldn't believe it could be fixed so easily. Well, 3 weeks later & I had painfree sex today & my boyfriend is over the moon! We have been together 6 mths & he was starting to lose hope we would ever be able to do it. I am so happy & want to give hope to others in the same situation. I don't know why, but somehow my vagina seemed to tighten up after a few months of no sex, but is easily stretched with the dilators. If this is your only symptom of VV, you may be like me, & be able to easily fix it!! It could also be vaginismus, where the muscles tighten up through anxiety. Please look at other options before you try the more severe treatments! I was nearly at the point of having the laser treatment etc, I was so desperate to have sex. Thank God I didn't! I am SO angry at the gyno who wrongly labelled me & has basically wasted 2 years of my life for nothing. For anyone who is doubtful about the dilators, I have also been taking calcium citrate daily for the past few weeks & sleeping on a magnetic underlay that is meant to alleviate any inflammation in the body, but I honestly believe it is the dilators that did the trick. I hope this helps others. Please don't give up.
CommentHi all. My name is Stephanie. I am 35 years old and have been suffering with what I believe to be vulvodynia for the last 7 years. I can remember the exact day that I began having pain and as I'm sure everyone else has I have been on a roller coaster ever since. Doctors, creams, doctors, biopsies. I'm sure that you get the picture. I have been taking Elavil pretty much since the beginning as much as 75mg but only 25mg for quite a while now. The 25mg seems to take the edge off but I cannot say that I have had a day that I felt 100%. As I am writing to you I am in the week before my period so I guess that you can all imagine how I am feeling. I am in a wonderful relationship which I have been in for 8 years. Two of them married. And at the present time we are talking about starting a family. I have been informed by my doctor that I absolutely cannot be on Elavil whil I am trying to conceive or are pregnant. Needless to say this same doctor is the one who put me on the Elavil and gave me prenatal vitamins without mentioning this at the time. I only found out that I am supposed to stop the Elavil because I called the office and asked if it was ok to take. Nice huh. Does anyone know of a good Dr. that is familiar with vulvodynia in the South Florida area? Or has anyone continued to take Elavil while pregnant? At the present time I am not pregnant and am still taking the 25mg of Elavil per day. Any comments/advice would be appreciated. Thanks Stephanie
CommentToth's site http://www.fertilitysolution.com/ the IV was 10 days the first time, and 12 the second. I do believe that if oral antibiotics do not make you feel better, it might not be worth it to try the IV. The second IV was the miraculous one for me. We used the medication that made me feel better in the intravenous form, and I believe that is what did the trick. Although the first IV did take away my lymph node swelling and the mal odor from my vagina. I do think that his cultures are worth while, and if he sees something he considers pathological it is worth treating for the health of the reproductive tract, but I do not feel as though he has necessarily isolated what caused my vulva pain specifically.
CommentI read Rose's story and got all excited. Rose- how did you get the dilators? Was it through insurance or did your doctor just give them to you? I also only have painful sex, none of the other symptoms that I read about. I'd love to hear from you how you got the dilators and what exercises did you do? Thanks.
CommentTo M - yes I got the dilators from my gynaecologist. The first time around I had to pay a small amount as a deposit, I started on a finger-sized one (made out of glass, like a test tube type of thing) and then every week or so would return it and get the next size up. This time around I had to buy the dilator from the doctor's surgery (about $25 (Australian) dollars), it's a new type made out of rubber/plastic & you actually blow it up with air yourself through a tube so you can adjust the size. I just used it for 10-20 minutes each night when I went to bed, you just insert it and leave it there while you read, relax etc (my doctor told me to move it in and out but I found this caused some discomfort). I sometimes used some vegetable oil as a lubricant. The longer you do it, the easier it gets to insert it until eventually it doesn't hurt at all. It just gradually stretches the vaginal opening over time, you don't notice it all at once. They work wonders!! Only a month or so ago I tried the Lidocaine gel before sex but still we couldn't do it as it hurt too much. I'm kicking myself I didn't just try this sooner. I hope this works for you too, it is certainly worth a try. If you can't get them from your doctor, they are readily available on the internet or I guess you could even try a sex-aid type shop if all else fails.
CommentI am in England and have had problems for 18 months. My problems started after a days walking in tight trousers and I noticed I was sore on the left side of my genitals. In the following months it got worse and at its worse I had burning pain, numbness in thighs and buttocks and my immune system was bad - illness after illness - intense pain near clitoris, and on left side to entrance of vagina. I have been treated by my GP, a genito-urinary consultant, psycho-sexual counsellor and gynacologist. There is never anything to see - which has made everyone believe it is all in my head - but my sex life has dwindled, though I have always had soreness on and after penetration. I have had thrush treatments and have been on Aciclovir (Herpes treatment) for over 6 months as "it might be herpes" although no tests prove this and I have not slept with anyone other than my husband for 15 years. I don't use soap products, wear cotton pants etc... I think the medical profession do not know what it is and keep sending me to different departments at my local hospital to no avail. I get very "sad" - no sex - very understanding husband - but for how long! Any thoughts does it class as vulvodynia? Also are there any UK chat room/guestbooks as the UK do not seem as ahead with these types of condidtions as the US.
CommentI have written before one time while suffering with the same symptoms as everyone else. I have also been from Dr to Dr. with no cure in sight. This is my cure... if I even get posted as many people profit from sights like this. The cure for me was to quit useing any kind of soap at all. That sounds gross but if you, as I did used yeast meds to cure this problem your skin around that area has been sacrificed. I also suffer from OCD which means I obsessed about being clean. Also watch what you wash with your clothes with, because if your like me you used wash rags with anti bacteral soaps to cleen your counters. Washed with undies, sets up a feeling like you have a yeast infection. Of course you go ahead and use a yeast cream to stop the burning which futher drys the tender skin which makes our whole problem. Many people make money offf these sights so You may never get my info. I pray you will because It has only taken 3 days to be cured. Lots of love l
CommentIf my post helps you please leave a response. Happy now l
CommentWatch what you wash your clothes with. When you clean the counters do you wash the rag with strong detergents? Not all that strong stuff gets washed out with the rinse. Keep washing with no soap as ALL saops are drying as are yeast meds. Keep up the faith l
CommentI have the cure and I guess this so called Dr. glazer is taking cures off the posts. The cure... do not use any soap at all. The body fights soap and the whole problem is caused by this. I belive Dr, glazer has taken off my posts of a cure before
CommentI HAVEN'T POSTED IN AWHILE. I HAVE HAD VESTIBULITIS FOR 15 YEARS.MY LAST SURGERY WAS IN MAY TO REMOVE A BARTHOLINS CYST AND TO LOOSEN A MUSCLE THAT HAD BEEN TIGHTENED IN A PREVIOUS SURGERY AND TO HAVE A VESTIBULECTOMY. I HAVE TRIED TO HAVE SEX ONCE SINCE THEN AND IT WASN'T POSSIBLE. I TOO AM NOW USING THE DILATORS. I HAVE 4 OR 5 DIFF SIZES AND HAVE TO WEAR THEM ALL NIGHT LONG. READING THE PREVIOUS POST ABOUT THE POSITIVE RESULTS FROM DILATORS BEING USED FOR 10 MINUTES WAS ENCOURAGING. IF 10 MINS WORKS THEN ALL NIGHT SHD REALLY MAKE A DIFF. I STILL TEAR SOME WITH THE DILATOR. MY DR. ORDERED THEM FOR ME. THERE IS A SPECIAL GEL THAT HAS TO BE USED WITH IT SO YOU DON'T GROW BACTERIA LEAVING IT IN ALL NIGHT. IT IS CALLED TRYMO-SYN. I WILL KEEP YOU POSTED ON ANY PROGRESS. GOOD LUCK TO ALL.
CommentThe Dr, did leave my earler posts. Sorry I just don't trust Dr's anymore, as they have NEVER GIVEN ME A CURE> I hope someone like you would understand something like that; l
CommentThe Dr, did leave my earler posts. Sorry I just don't trust Dr's anymore, as they have NEVER GIVEN ME A CURE> I hope someone like you would understand something like that; l
CommentI have a question regarding the use of vaginal dilators. Doesn't it hurt? I have pain with a small tampon so I am confused as to how one with vulvar or vaginal pain would be able to keep something of this size in the vagina. Please explain the entire process to me. Thanks a lot.
CommentWe should not be angry that doctor have not "given us a cure" yet. I feel that being stuck with this disease is a real tragedy, but I don't blame anyone for it (i.e. God, the devil, Monistat-maufacturers, etc.). Everyone has awful stuff to deal with in life. We can either choose to get bitter and stop living a normal, trusting and open life, or we can accept this challenge for what it's worth. It will not kill us. It will make us cry and scream sometimes, but we are still in control of our lives. We are all learning profound things about ourselves by coping with our pain. I, for one, didn't think I could endure years of pain like this, but I have, and I'm a lot stronger of a person because of it. I'm not saying I would choose this or like it, but I believe attitude is everything. The support and love we can give each other here is priceless. Let's remember that there's no use wasting our energy on being mad at anyone!
CommentSometimes it's hard not to have some anger. It would be one thing if this disease just happened to us, but in a lot of our cases it was the fault of a doctor. I went for a routine pap and was told I had a yeast infection and was given a cream. I asked for diflucan and they wouldn't give it to me. The cream caused my skin to be raw and irritated, then I was given cream after cream. Then when the doctor reviewed my records she said, "I don't think you ever even had a yeast infection." I live my life the best I can I have a great husband, family and friends and a lot to be grateful for, but I do have anger toward the doctors who cause these problems and then act like it's all in our heads and I think I am justified in my feelings. Sometimes people just need to vent and feel comfortable doing it here and I think it's wrong to tell people not to.
CommentTO L. YES THESE DILATORS DO HURT. AND WEARING IT ALL NIGHT IS NOT COMFORTABLE. BUT, WITH THE HOPE THAT THE SKIN WILL STRETCH ENOUGH FOR PAIN FREE SEX IT IS WORTH IT. SOUNDS LIKE DILATORS COME IN MANY DIFFERENT FORMS. MINE ARE MUCH DIFF FROM ROSE'S. SHE ASLO DIDN'T MENTION THE TRIMO-SAN GEL THAT I HAVE TO USE. THAT ALSO COST $20. A TUBE. I AM GOING TO GIVE IT MY BEST TRY. I WOULD CHECK INTO IT IF PAINFUL SEX DUE TO SMALL OPENING OR TEARING SKIN IS YOUR PROBLEM. GOOD LUCK.
CommentI wanted to respond to the last post. I too, was given a medication that harmed me, metrogel. I never ever in my life experienced the incredible pain and burning from this gel. It has taken me over a year to feel less burning from the 2 applications I stupidly used. My doctor's schedule was too full and her physician's assistant examined me. What a mistake to have accepted an appt. with this person, rather than wait a couple of extra days to see my doctor. Of course, no one is going to accept blame. I just hope that some day I will recover completely from the gel and not have to live with this forever.
CommentWell, I"ve done my fair share of venting here, and I'm not saying it's wrong to vent. I'm just trying to give some perspective on the situation. I was also concerned that someone was lashing out at Dr. Glazer just because he was a doctor, and I wanted to point out that we can end up going to far in our anger. Our first battle is within, not with the world around us.
CommentI for one am not mad at doctors. I'm mad that so many women are constantly self-medicating with OTC meds like Monistat. It's created a cottage industry of ignoring medical attention and using whatever is cheap & convenient. But using that crap whenever you feel an itch will kill your vulvar skin. I did that way too often, so I'm mad at myself too. :-(
CommentRose- Thank you for the information. I'm looking forward to talking to my doctor and dicussing this with him. Meanwhile, I may just use a small dildo (I hate that word) that I bought years ago. I'll definitely post if I get better. Granted, having a sexual partner would make it easier to assess progress, so I'll have to work on that, too.
CommentDoes anyone else wonder if using yeast infection meds was the root cause of their vv? I think that's when my problems started. I'm afraid to use them now, but sometimes they are necessary.
Comment
CommentI have had vulvodynia for around 4 years now and my doctor had me on Elavil and Zoloft with much success. I recently had to wean myself off of the Elavil because I am now trying to get preganant. Just recently I have had itching and slight pain returning but I tested negative for a yeast infection and Diflucan didn't do a thing. Now I have been prescribed a cream called Zonalon. Has anyone heard of this? I have been using it for a few days and today I am having constant burning and am wondering if anyone else had problems with this cream? Any information would be greatly appreciated. Thanks!
CommentYES! I had a very mild case of vulvodynia where intercourse and tampons were possible. I was then diagnosed by Gae Rodke in NYC as having a major yeast infection. She put me on many different topical yeast meds. The burning and pain was unbelievable...insufferable! I stopped all meds. over 6 months ago but I have never been the same since. I have spontaneous burning, pain, and am unable to use tampons or have intercourse. I am not saying that yeast meds. are the cause for everyone nor am I saying that they won't help...just beware. If anything topical gives you a lot of burning, I would encourage you to think carefully before continuing to use the medication. I let the burning and discomfort go on much too long before quitting the regimen.
CommentTo LORIE I can relate to your last post. Please read my post from 7/23/02. An update from that post: the diets didn't work either. i am now going to take myself off of my BC pill because other women have said that that has helped. I am also getting a referal to Dr. Horowitz in Conn. Good luck to you.
CommentI completely believe the girl that said she was basically cured by a dilator, but let's not foget that she had pain only with sex. If you have pain all day long, I doubt you are just tight, children with intact hymens do not have pain from just walking around.
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CommentHi !!! It is so refreshing to find a web site on VV. I have now had it for 7 years. I have tried everything from creams to low oxalate diets. Nothing works. I just read an article on Chirapractors and have found one I am going to contact. It is worth a try. I still think they should set up some more specialised clinics in the UK. More and more women seem to be suffering from this terrible pain that ruins your life. Why dont the Medical profession do something about it!!! Men's erection problems are being recognised now - why cant this be!!! It is unfair that us women are rummaging around in the dark to try and find a cure. It has got to be something to do with chemicals in our body or an allergic reaction to some sort of medicine. If only they would do some specific trials to find out what it is. Sorry, just feel sometimes that we are not treated at all seriously. God bless all of you in pain.
CommentI have been taking elavil for about 7 months now and I feel like it's just bringing me down. I am not the same person I used to be before I had all of this vulvar pain. It really wipes you out. Its always on my mind from the time I wake up to the time I go to bed. I just left my job, I am becoming very lazy and feel like I cant snap out of it. I dont keep in touch with my friends any more b/c I feel like I just always complain I used to feel like I always had a bladder infection or a yeast infection and I think taht just got tired of me complaining. People really dont understand about this disease unless the have it. I dont really go out anymore b/c i have gained about 15 pounds and just feel gross. The thought of putting on a cute pair of jeans or pants makes me cringe!!!! Everything they sell now is sooo tight I would die!!! And the fall is coming and you really cant wear a skirt everday anymore. Sorry if I am boring anybody but I just want to be the same person I used to be. Its really depressing to know that I am taking anti-depressants that are making me even more depressed.
CommentCan somebody tell me how many tablets of SUMA Dr. Ledger recommends per day? Thanks
CommentIf the Elavil is making you more depressed, please see your doctor. There may be something they can prescribe to counteract those effects. Anyway - make sure you tell someone and see what th ey can do. Don't suffer in silence!
CommentWHO IS DR LEDGER AND WHAT DOES SUMA DO? I HAVE HEARD OF A MUSCLE RELAXER CALLED SOMA? IS THAT THE SAME THING?
CommentTo J- I had the same side effects from the Elavil (although I took the generic). I was fine with the 10 mg dose, not as good with 25 mg, and really unhappy with 50 mg. I was bloated and miserable. Nothing fit and I cried a lot. Wean yourself off once you talk to your doctor and try something new. I have now switched to 10 mg of Pamelor (generic is Nortriptyline) but it's only been a week. Someone else recommended you ask your doctor for something to combat the depression. I am on Celexa (not for VVS but because my sister just moved and I was really sad) and have not had any side effects, I feel pretty good. For the person who was asking about SUMA. I get it in liquid form from a health food store. I consulted with the lady there (and later with my homeopath) and I take about 2/3 of a dropper twice a day with juice (otherwise it tastes terrible). I have not seen much difference in my body but I haven't been taking it regularly. Hope this helps.
CommentThank you to Rose for posting your response. I also wanted to say that some of my irritation problems were helped some by a low-oxalate diet and for sure by using Fels-Naptha soap to launder my clothing (for those who are unfamiliar, its an old soap my grandma suggested with no perfume or dye). I just recently saw a new Ob/Gyn and was told yet again that I have nothing wrong. He also wasn't too interested in listening to what my concerns were about Vulvodynia and said that its just a diagnosis when there is no explanation for the symptoms. HELP!!! I was really feeling hopeful for help and now I could just throw myself on the floor for a good cry. If there ia anyone who knows of a good doctor in the mid-Michigan area, I could sure use some direction here. I went to this Dr. by a recommendation (by someone with a different problem) and was told how nice and concerned he was about her issue. I do understand that there are people suffering much worse out there, but right now I'm just feeling so low. This is at least the 8th doctor I've talked to about this (at this point I've lost track) and I really need to find one who will at least TRY to help me. At this point I don't even care what they suggest as long as they take me seriosly. Thanks.
CommentTo Curly: Regarding your latest gyno, my wife like many sufferers has been through the same thing with these doctors. She is disgusted with their ignorance and lack of caring. I suggested she ask either the doctors receptionist or nurse if the doctor is familiar with vulvodynia prior to making an appointment. Vulvodynia is real and while there may be several causes for these symptoms it should be unacceptable for you as a patient to allow your doctor to deny that fact. He may be right in a way that this term "Vulvodynia " is used to describe symptoms the cause of which are not known. Does this excuse him from acknowledging the existence of your pain and addressing it? Stay strong and best of luck!
Commentwas reading an interesting post and thought others might be interested in doing so, especially if you think the cause of v.v. may be yeast related or from antibiotics. And by the way, the book Bill speaks of is excellent! www.icsuccessonline.com/Bill.htm
CommentI have just returned from meeting with a specialist at the University of Washington Medical Center Women's Care Clinic in Seattle Washington. After 5 years and 1 month of suffering from what I learned today is called vestibulitis, I have found a treatment for this miserable condition. In addition to Dr. Glazer's suggestion that vulvodynia occurs as the result of pelvic floor muscle dysfunction, I learned that there is another contributing factor. The pain that I have began following a severe yeast infection. The nurse practioner I saw today told me that she has found, after studying this condition for over 20 years, that in some women's genetic makeup, the body's immune system over responds to the yeast infection, and in a way similar to body's response in asthma or allergies, the tissues become inflamed and irritated, only for some reason the tissues around an area where the Bartholin's glands are located stays irritated and inflammed..somewhat of an autoimmune response. These glands are located on the side walls of the vagina, near the vaginal opening at the base of labia majora. This inflammation results in PAIN at the entrance of the vagina, and PAIN upon penetration during intercourse as well as a multitude of other symptoms in that area. My pain has been constant making it difficult to sit, with intermittent sharp stabbing pains. It was also pointed out to me that vaginal muscle spasms occur because of the pain in the area, and the muscle tightness causes more burning and pain...similar to, say, if you pull a muscle in your leg, how it burns... As Dr. Glazer recommended, treatment includes pelvic floor muscle exercises with a biofeedback protocol with a physical therapist who understands the condition. There are other types of treatment suggested, and according to my healthcare provider, there is only one other clinic that she knows of other than the UWMC that does the most effective treatment. Seattle is a 6 hour drive away from where I live, and the treatment plan will be rather disruptive to my schedule, but she assures me that she has seen between 80 and 100% resolution of the pain. Enough said...worth it me! If you want to hear more, please email me. I have tried soooooo many different things, and this is the first time that I have felt hope and certainty that this will work. If you have an overactive immune system, ie: allergies/asthma, and your vulvodynia started after a yeast infection, (or if neither of these apply) please, email me. I feel so hopeful...as a nurse myself, what I learned today makes medical sense as does the treatment suggested. I was so excited to hear that this is not a condition that is in my head, I actually cried! God is good! Judy Kidd maddkidd@theofficenet.com
CommentDr. Ledger is the doctor at Cornell who discovered many women with vulvodynia have a gene that causes inflammation. SUMA is a natural substance, you can get at GNC, that is supposed to help the inflammation. Thanks to the person who gave the answer about the liquid form of SUMA, but I have capsules. Does anyone have an answer to how many capsules Dr. Ledger recommends?
CommentRegarding Suma... I have read that Dr. Ledger recommends 1 capsule 3 times a day. The capsules are 500 strength.
CommentSusan: I have just discovered that I have the 2;2 allele, and would like to ask you some more specific questions by email. You seem to know a lot about it and I am just begining my research. My main problem is getting my doctors here to help me because while they admit this theory makes sence, they have no experience with it. I am thinking of going to see Dr. Ledger but I live in Tucson so I am hoping it will be worth the expense. I have seen so many doctors with no results.... Please email me if you feel comfortable. I have seen the discusion of the SUMA product and will try that. Just to comfirm, is the recommeded dose one capsule three times a day? Also to comment on the issue of men on the website. I can see how that might be uncomfortable for some women, but for those of us whose husbands suport us by taking an interest in this problem, it is a blessing because they too can take comfort form other men who deal with the same issues in their relationships, and this helps us in the end.
CommentHi, I am new to this group and new to this awful problem.About 7 wks ago I started having a constant pain and burning and except for a couple hours it has not stopped. I wemt to my gyn. who said I had vag.dryness and put me on a esring and a combipatch. 2 weeks ago I started neurontin and effexor. I going to start watching my oxolates and have an appt with a pt. I am trying to cover all bases.I feel desparate to get this under some kind of control. My husband and I took early retirement and were planning on moving to Costa Rica in Oct. It was going to be our dream. We have sold our house and cars and are living with a friend. Then this happened. I dont want to go to a another country till I can get some kind of relief or treatment plan that I know will work. I desparately need help from all of you to tell me how do you cope with going on with your lifes...how do you distract yourself from the pain, work be with other people, etc. PLEASE any suggestions are welcome.THANKYOU all and I pray for all of us all the time. Marsha osta Rica
CommentTO LIA: No, you are not crazy!! Dr. Stewart is a wonderful researcher and writer, but she tends not to practice what she writes. The trick to dealing with her is to do the research on your own and then just request treatments from her. TO MARSHA: RE: effexor. Are you having any side effects from it? When I took it, I had HORRIBLE side effects, but the important thing is that they DO PASS!! Who is your doctor? What part of the country do you live in? Just a little update on myself: I am now off all meds bec we are trying to get pregnant. I can't say my pain is really any less, but I have reached a point where I am able to deal with it. I went through a horrible time trying to get care from doctors, etc. I just decided one day that for me, it wasn't helping to spend that much time/energy on trying to cure myself. When I did that, I found that I had so much more energy for every day living. I am not suggesting this for anyone bec I know others have much worse pain than I do, but this has helped me. As for treatments, right now I am sticking with my PT ex's and doing regular massage and body adjustment to keep things stable. I will pursue things more post-baby.
CommentTo Carli:Thankyou for the mention of support regarding men on this site. I have posted quite a bit, maybe too much and I am sorry if any women were uncomfortable with that. I never could understand how a man could be a gyno. and seperate his sexual drive from professional manner, I do now. No I'm not putting myself in league with professionals but I swear reading this site and the intimate sometime sexual content is NOT any kind of turn on. I read these posts and think of the pain the women are enduring the strength they exhibit to carry on and the loss of intimacy and sexual pleasure for both themselves and their loved ones. I admit there are probably men reading this site and getting some kind of thrill from it, don't let that sick reality stop you from sharing and helping eachother. Thank you..
CommentI was diagnised with vulvadynia 2 months ago after having had numerous drs appointments to resolve and test for HPV. I had 3 exams in 1 month and after that, boom, constant discomofort and pain. I take brith control, have migraines, am in pain in some part of my lower region all the time and am ready to give up. i am 23 and they said i am healthy there, but still in pain. I am not sexually active but cant even get a tampon in, tried steroid cream hurt worse, used A&D everyday and will likely start TCAs, will start chiropractic care and take all the vitamins suggested. i am ready to give up. AT 23 i feel i am no longer a woman and afraid I will never get married bc I will not enjoy a normal sex life, Prior to this i was sexually active and had painless sex, now if someone were to touch me or God forbid i have to go to they gyn, i almost pass out from pain, My doc said there is little she can do for me and I am about ready to give up and end the pain myself- this is not fait for any of us to have live like this. I just want to be normal and I fell like all the cards are stacked against me- I am very pretty but very overweight and every doc says lose weight- u try working out when your genital feel like they are on fire. I do the no oxalate, not even low, and no relief yet. Docs out there please I am begging you for my sanity and my life to please find something that will help this, PLEASE
CommentI have just read the 19th book. I am not surprised how many letteres have been entered here-with GREAT sadness. I last posted a letter about a year ago. I am 41 and have had vulvar vestibulitis for 14 (yes14) years. I have never had an enjoyable sex life. I am married and divorced(not just because of this), but looking honestly-it was a contributing factor. I also have 2 children, but it was VERY painful getting them. I love them dearly!!!! The only thing that worked for me was the cheapest and easiest remedy I tried (in 14 years I have tried many things). I take calcium citrate 1 or 2 a day. I also rinse all the urine off my skin every time I urinate-if I don't do this my symptoms get worse in hours. I do take Diflucan every 2-3 months for a yeast infection (which I attribute to eating to much sugar). At this point I am 99% symton free!!!!!!!!!!!!!!!!!!!!!!! But, I haven't had intercourse since my divorce-I don't think my vestibulitis will ever be gone, but 99% free is awesome. Hopefully I will meet someone and have a married life again-but it will have to be someone who fully understands this problem. Good luck everyone and God bless.
CommentI just posted a letter about calcium citrate and rinsing, but forgot to ask this. I have a dear friend who is suicidal because of her vulvodynia. She has been on many drugs, including fentanyl and Tramodol now- she can barely function and feels she would rather be dead. Has anyone tried acupuncture for vulvodynia? I am trying to suggest short term goals for her until (hopefully) some relief is in sight. We belong to a support group in WI.Thanks
CommentDoes anyone know of any doctors in north Jersey that actually specialize in vulvar disorders? I am desperate to find help. Not only do I need help in this area, but its so sad that I am sure some of us just fell so depressed and helpless. I went to the movies the other night, and just sitting there caused so much pain. I am only 23 and have my whole life ahead of me but I am dreading it if I cant go out and enjoy things like I used to. I feel that all I do now is sit home with an ice pack and eat. Thats real healthy right!?
CommentI have suffered with vulvodynia for the past eight years. i have had some relief during that time, however for the majority have remained in pain. the longest time without pain was for about the last year and now all of a sudden it seems to have "flared" ten times worse! I have always tried to watch my diet and have used vitamin oil topically and have taken anti-depressants as well but there really has been no change this time around. I was so exited when I decided to log on to my daughters computer and found this page. I feel I do not know what to do anymore. I absolutely hate taking pills and have stopped. I figure they aren't helping anyway, so why? I have been unemployed for the most part this year due to emotional stress becoming overwhelming in the workplace, and I strongly feel that the frustrations of this disorder are majorly responsible. I have recently started another job in a completely different atmosphere and I really, really, would like for this to work out. I have a teenage daughter who has grown up watching me suffer with this and has probably not seen me happy as much as she deserves. She is completely informed of the situation but is unsettled with the conclusion that there is nothing to be done about it. I have no health insurance, so of course financially I am not capable of even seeking routine treatment, and certainly not specialized treatment. well, I feel a little better writing what I go through and knowing that the ones who read this actually know what I am talking about. I think what Dr. Glazer has discovered is a blessing from God and anyone able to take advantage of his treatment will benefit greatly. God Bless you!
CommentI just complete an entry and faile to complete my email address.
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CommentIn reading everyone's postings I never hear of anyone whose pain started the way that mine did and I was wondering if anyone could tell me if this is how it started for them. I feel very alone because no one seems to have derived their pain the way I did and all these different things to try don't ssem to work for me. I tried Dr. Glazer's exercises. I admit I did it faithfully for about a month and found NO relief. I know that you are supposed to do his program for nine months, but I would have though that I would have seen at least a tiny bit of difference. I've read where other women who it has worked for started to notice a differnece in a few weeks. Not me. Should I try again or is it a waste of time? Any suggestions? My pain is a soreness that I got right after having intercourse a few times on the same night. I hadn't had intercourse for a few years and probably less that 30 times my whole life up until that point. I got very sore and I now get very sore from sitting, after intercourse or too much touching in that area. I feel like I wore out my skin. Like there is tissue damage. Did anyone's pain start in this way? Dr. Glazer told me I have dysthetic (however spelt) vulvodynia because I don't have the pin point pain that you have with vestibulitis. If all else fails, could I still have surgery to remove the bad skin? Does anyone have any thoughts, etc. Thanks for any help. I've been very depressed. I'm going on my third year of this. I've really been hiding my depression but inside it's killing me. My "new" husband is very understanding, but I can't show saddness all the time. Who wants to be around a person who is like that all the time! Sorry for venting, but can anyone help me with some input?
CommentTO BB: YOU TALKED ABOUT REMOVING THE AFFECTED SKIN AND I WOULD TELL YOU TO " N O T " NEVER, EVER DO THAT. I HAVE HAD 3 VESTIBULECTOMIES AND EACH TIME I HAVE GOTTEN WORSE. I CANNOT HAVE SEX AT ALL NOW. MY LAST SURGERY WAS IN MAY AND I TRIED ONE WEEK AGO AND IT WAS THE WORSE PAIN I HAVE HAD EVER. I CRIED FOR HOURS LATER. DO NOT LET THEM CUT ON YOU UNLESS ABSOLUTELY NECESSARY. IF YOU THINK YOUR SKIN IS BAD NOW, JUST WAIT AND SEE WHAT IT DOES AFTER IT IS CUT AND SEWN AND THEN TEARS AND HEALS AND TEARS HEALS AND SO ON FOREVER. BIGGEST MISTAKE I EVER MADE 15 YEARS AGO WITH MY FIRST SURGERY. DO ANYTHING ELSE SHORT OF BEING CUT ON. THAT CAN'T BE THE ANSWER. GOOD LUCK LIZ
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CommentJust curious .Did the antibiotic treatment you had cause yeast problems?Had you in the past had anything like BV? Thanks Maddy
CommentPlease tell me a way to get rid of vericose veins. I am only 19 and have them. I cant afford surgery. Is there another way? Please help. Thank you.
CommentTo Gina : You're in the wrong place asking about varicose veins, but here goes. A skin doctor will tell you there are several options one involves injections another uses laser to vaporize the vein. You are young see a good nutritionist maybe it is health related?
CommentThis past year I have used emu oil which has helped tremendously. I can stand to be touched there now. Recently, I have started using Aloe vera gel purchased from GNC, tea tree oil, and emu oil when I itch along with the burning. My pain has gone from a 10 to a 1, 2, or 3. I still can not wear jeans or most other pants because then my pain increases. Mostly I wear knit pants purchased from Lands End. If I wear anything else when driving I am in real trouble. I am beginning to think I have nerve damage from the pre-cancer cells I had last year which I treated with Aldara. Or maybe the nerve damage was caused by a difficult child birth (result was a severely disabled child who was stuck in birth canal for 11 minutes before he was able to come out). However, I did not start having problems until 5 years ago. Child is now 19. Who knows. I want to be able to wear jeans again and drive without discomfort. I want to not be conscious of my vulvar area constantly. Besides these other problems, I had a bartholin gland cyst that burst on its own after about 7 months of diagnosis. After this happened I could sit in chairs comfortably. I feel I am allgeric to certain chemicals, too. I have a regime which I have posted on here previously that has helped too. My question is will Estrace cream help someone like me? I am 48. My doctor gave me some to try, but it had the chemicals I am allergic to in it so I did not try it. (My doctor does not have alot of knowledge about this. I am the one who told her I had read about it on the internet.)
CommentYou can have Estrace compounded in a neutral base that will not irritate your skin (I think vitamin E is preferred). Please search the web for specialized pharmacies that can compound prescriptions. I have not needed my Estrace compounded differently, so I don't have the name of one, but I'm sure that some women here have done this. So, ladies, if you have any info, please let cc know. Thanks!
CommentFrom what I have written about myself, do you think Estrace is what I need if I have it compounded?
CommentYes, I think Estrace will help you. Your symptoms are similar to mine, and my gyn said I was an excellent candidate for it. Good luck!
CommentI'm glad I found this web side. I haven't had a formal diagnosis. I have been to three different doctors, six times. They all said I was normal, one said the pain was in my head. My pain started a couple of days after an episode of intercourse with a new partner and lasted a few months before settling down some. I hadn't had sex in a long time before that. I also have had numerous yeast infections over the past two years. Now I have good days and bad. I can't ride by bike, the horse, wear tight jeans, shave the pubic area, etc. I have tried all the home remedies but I still have flare-ups. I'm getting depressed over this. I really need to find a doctor in the Raleigh, NC area. Can anyone help me?
CommentTrish: Contact the Vulvar pain Foundation. They are in your area, and can probably reccommend someone. Best of luck. As for estrace, it can be compounded eliminating propylene glycol. You dr should be able to contact a compounding pharmacy, it will cost more, but its well worth it. As for it taking away the pain, its not a cure all. Works for some, does not for others. Use sparingly, as it thins skin over long term use.
CommentTo anyone who's tried Acupuncture for Vulvodynia, where did the Acupuncturist place the needles? Did you get any relief?
CommentCan sciatica cause pain in the pelvic floor muscles or around or under the area where the Bartholin gland is?
CommentFor those here who say they are severly depressed and suicidal I know the feeling. If sitting, wearng certain types of clothes, sex etc is uncomfortable it just seems as if there is nothing left of life. I feel worthless as a person. I am tired of cold packs and everyting else. I feel there is a cause and cure (or at least a successful treatment) for every type of pain. This is absolutely ridiculous to have to go through this horror. And if that isn't bad enough you can't even tell your co-workers why you are limping or almost in tears. People who aren't going through this don't understand. They more than likely have never even heard of it. You won't unless you get it. I am as a leper and feel I should be banned to an island where everyone is like me. The aloneness and knowing sex will never be a pleasure again is just too much to deal with. Chronic pain is debilitating and it is an crime that there is not one doctor out there who can help us. I find that unacceptable and unbelievable. If this is test, I'm flunking big time!!!!!!!!!!!!!
CommentBenell, You post is EXACTLY how I feel. I identify with a lot on this website, but none as much as what you wrote.
CommentTo Trish: I am so sorry you have this horrible disease. I know this will sound crazy, but it's good for me to know there is someone else in the state of North Carolina, also near my area that has this "devil in disguise". I have read all the comments from others in northeast states and the western states that seem to have right many sufferers, and I wondered if there were just not that many here in the south. I even thought about trying to attempt a trip to some of the northern doctors because I thought maybe they were more aware of this disease, but as you know, you and I have none other than Duke Medical Center right out our back door, along with Bowman-Gray, N.C. Memorial, and the ECU School of Medicine, and of course the Vulvar Pain Foundation in Graham. With all that available, it was a doctor in Tarboro who told me on the very first visit what was wrong, (this was after nine other doctors didn't have a clue). Unfortunately this was eight years ago when I found him, and he retired last year! No, I am not cured, even after all the things I endured have done to me, but at least this doctor gave me the will to live and the strength to carry on. His partner is still practicing medicine and might could help or,since it is closer, I talked to a doctor in Goldsboro that had been to a seminar about Vulvodynia and he was really interested in gathering more information because unfortunately there is more and more of this being seen now. I have seriously thought about calling him and asking how he's doing in his research and maybe, just maybe going to see him. Right now, I'm just "resting", catching my breath, taking a break, whatever, you want to call it until I start to fight again. Best of luck my friend.
CommentEstrace (like all estrogen creams) does not cause thinning of the skin with long-term use. In fact, it does just the opposite--it builds up the skin, vascularizing the area, increasing bloodflow. Corticosteroid creams are what thin the skin and should be used sparingly.
CommentBenell - You know you are not alone. Something that is really difficult for me is wearing jeans or even anything a little tight while I'm driving the car. I'm constantly having to pull at them. And then of course when I get home I have to take them off immediatley! I take a lot of baths with baking soda which is very soothing. I also have some problems with my low back/sciatica. I go to a chiropractor who says those symptoms can radiate into the urinary/vaginal area. I think it might be true because I also have urinary symtpoms, something that feels like spasms, but no infection. And I get more relief with him than the regular doctors!
CommentKathy - I am sorry you have had to suffer for so long. I have only had this for a year. It's frustrating to know there isn't any help in the area and that we have to travel so far to get some! I'm glad you found someone to help you for a while, even if he did retire. My doctor told me it was all in my head. At least I could find someone to give me some support. Let't hope that doctor in Goldsboro starts doing some serious research. Good luck.
CommentWhen women write that they can't "tolerate" elavil, what exactly does that mean? I'm used to tolerating most things- constant headache for 7 years, debilitating back pain, muscles in constant spasm mode, vulvodynia for 12 years etc. Name a body part and I can give you something that is wrong with it, but I still remind myself how lucky I am. I've never had such bad side effects with a medicine (and I've taken dozens) as I do with elavil. But I almost feel like now the effects are not as severe as when I was on a lower dose, or maybe I'm just becoming used to feeling lethargic all the time. Then there is the shaky hands, dry mouth 24/7, constipation and diarrhea, out of control bruising, inability to exercise due to muscle fatigue, and sometimes blurred vision or random jerking of my legs. I think these symptoms have lessened as I have gone from 25mg to 100mg of elavil. I want to keep going up, but my mom is too worried. I'm 19 so I guess I still take her opinion as final. I guess I'm worried too because some doctors have told me that the elavil is in such a small dose that it won't matter that I'm already on Effexor for depression. This site was the first place that I read of women with vulvodynia using effexor. So if I'm already on 300mg of Effexor and now 100mg of elavil should the doctors be telling me "It's fine, some women need to go up to 200mg of elavil." That dose is what they would treat depression with, and believe me I don't get the enjoyment of being the happiest person alive. If the "stopping the pain messages with tricyclic anti-depressants" approach was the right one for me would I be seeing dramatic results by now?
CommentHi there, this website is great to read through. It's like suddenly having a new group of friends to chat to who really do understand you. I have pure vestibulitis and after many creams and antidepressants, I am going into hospital next week for a vestibulectomy but I'm quite confused after reading that it does not seem to work for several of you. Does anyone have any good tips for me. How long did you have off to recover? How long was it before you could have painfree sex? I'm hoping to try for a baby after this operation and would like to hear from others in the same situation. I am based in the Midlands, UK. Also what's this low oxalate diet? Does it make any difference to pure VVS? Look forward to hearing from you.
CommentHello, I have been reading this guestbook for some time now but have not yet posted anything. Everyone seems so sad that I thought I should share some good news with you all. I have had vulvodynia ever since I reached puberty (about 7 years now). It wasn't a real problem until I became sexually active, and still wasn't unbearable until just a few months ago. But to my surprise I have been making progress recently, and although I'm not completely pain free, I am very happy with the results I have been getting. I have done some research and have recently started taking some vitamin suppliments. I take 1000mg of Calcium Citrate (with magnesium) a day. This is supposed to neutralize the oxygen in my urine (not to mention help prevent bone loss later in life). I am also taking 1000mg of N-acetyl glucosamine (NAG) a day. This is an amino suger which helps build ligaments and mucous membranes (e.g. the vagina) in the body. I am happy to report that after only a week of taking these the pain during intercourse has been significantly reduced. I'll keep you guys posted with my progress. Hopefully this will help some of you as well. =)
CommentI'm not sure if this is my case or not. However, I have had a chronic yeast infection for the past year and a half. I have always been prone to them. Between Sept 2001 to March 2002, I visited by OB/GYN about 10 times. I lost my job last August and initially attributed it to stress. As precautionary, I was tested for STD's, HIV, early menopause, thyroid, diabetes, glucose levels, etc. Nothing. I am waiting for insurance so that I can test for food allergies. I came across an article for vulvodynea and found a book called, "The 'V' Book". Some symptoms are similar, but not constant. I want to find a doctor in my area so I can either rule it out or find the problem. This causes a strain to my relationship and not to mention the fact that it is uncomfortable. Can anyone offer help/solutions?
CommentThere is a book available at Barnes and Noble for about $18.00. Its the most informative book, and I really urge anyone out there to buy it, or go to the store and read it. Its called the Yeast Connection and the Woman (all types of yeast infections), and what it does to the immune system. It includes a chapter on vulvodynia, and frequently describes symptoms of vulvar pain, vaginitis, IC, chronic yeast infections, UTI's, you name it. It mentions that yeast can be a problem even though tests show the opposite. It also goes on to connect fibromyalgia, chronic fatigue, headaches, hormones, this list goes on and on. I cant say enough about the book. I think it will give insight to a lot of sufferers. Hope this info helps, bless you, laurel
CommentTo All: My wife had an appointment with a new gyn. this friday. Tonight at seven in the evening she got a phone call from the doctor's office, the receptionist told my wife her appointment was canceled and rescheduled for the end of the month. I was yelling in the background I was so mad. My wife said she had waited all summer to see this new doctor and the person said she could see a nurse practitioner. My wife said she wanted to see a real doctor and that her painful condition warranted just that. The person just about came out and said delivering babies was more important. My wife said she would go elsewhere. You can choose to accept the bad treatment by these professionals or speak up and be heard. Maybe the next doctor will be the same, maybe not. My wife was very upset she said if your not having a baby they don't care, it's the big money for them. She had a previous doctor for two of our daughters and he was great. Delivered the babies and saw my wife for follow up visits. Then the vulvodynia began, he prescribed some medicines referred her the the expert here in Ct then just turned his back on her. No more babies and a problem he could not resolve so she became someone he did not want to look at. His failure and my wife's loss.
CommentI'm told that the Bartholin Glands secret fluid when a woman is aroused to create lubrication. Does anyone know if these glands could be infected (and might need to be drained) even if they still lubricate? I don't have a problem with "moisture" when I get aroused but the swelling I get afterwards seems to be more than what I would think normal is. If I push on the spots where I think these glands are it feels really hard and can hurt, but only after being aroused. I don't feel any lumps under normal conditions, except when I sit, sometimes it feels like I have lumps at 3 and 9 o'clock (different from the Bartholin Glands). Is this just swelling and inflamation or could they be clogged in some way anyway? I should mention that immediately after this happened to me, I no longer have a normal everyday discharge like I used to. I never show signs of any infection except yeast sometimes but I don't get yeast infection symptoms, burning and itching. I just have pain and soreness. Forget the day after intercourse. It's usually ended with tears. Does anyone know more about these glands or anything?
CommentHi Sue: There's info at http://familydoctor.org/handouts/235.html Hope this helps.
CommentJust something to let everyone know. There is a better blood titer test available now for Herpes that can identify and differentiate between types one and two. Up until now the blood test could only tell you that you've been exposed to Herpes, but not what type. If anyone is wondering if they are carrying the virus, and having burning and irritation rather than blisters, I recommend it. Me, I've just had it and I am completely negative for both types, which is a relief - but back to the drawing board for the VV. Frank - Don't overlook the nurse practicioner!! My OBgyn actually set me up with his nurse practicioner because she knew much more about VV than he did!! She is wonderful!
CommentI was wondering if anybody's symptoms began with a certain kind of birth control pill. I am currently taking the brand alesse and feel like this pill is just making me feel dry. I no longer have the discharge I used to. I cant stop taking the pill because its keeping the cysts I develop under control without bursting. I was wondering if most of you are on birth control and if you feel it is one of the causes of vulvar pain and itching? I also have really bad allergies including fruit allergies and I think that this too has alot to do with this whole vulva mess!!! Has anybody else gained weight due to being depressed over all of this??? I also dont even want to keep in touch with my friends anymore - my whole life has changed because of this. I just want it to GO AWAY!!!!!
CommentIt's hard to tell whether my vv was caused by the pill or recurrent yeast infections. It's also hard to tell if I gained my extra 30 pounds from the pill or from being depressed over vulvodynia. There are a myriad of triggers for this disease; everyone's different, but one thing is the same...once you get it, it takes over your life, that's for sure. We know what you're going through. We're all in this together! (((hugs)))
CommentDoes anyone else have any of the other symptoms (conditions) mentioned on the vulvarpainfoundation website? You can find out these related disorders by going to www.vulvarpainfoundation.org/effective_treatment.htm then scrolling down to Related Disorders. I have the burning mouth , red blood cells in urine and most of the other condtions mentioned.
CommentHi Benell: I get burning mouth sometimes, microscopic amounts of blood in my urine, urgency and frequency occasionally, etc. I'm sure we're not the only ones, but this whole thing sucks. I'd like to have a sex life with my husband, but that's a pipe dream!!!!!!!!
Commentbirth control pills promote yeast overgrowth. look into candida.
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CommentThey may seem completely unrelated but it's bothering me so I thought I would ask. In all the depressing reading up on sex I've done (most before I realized that what I had was vulvodynia) I've come across a condition called clitoral foreskin adhesion (also called buried clitoris, adherent prepuce, and clitoral phimosis.) I never questioned my clitoris until I read this, and now I wonder if I could have this and that might be contributing to the pain. Of course when I tried to search for it online all that came up was male or female circumsision (mostly male.) If I don't see a picture than I won't know if that describes what I have. Just a shot in the dark- Does anyone know of a site where I might be able to find information on this?
CommentI'm sorry but at a time like this - the last thing that we want is our husbands or boyfriends chasing us around after they had just popped a viagra pill !!!! OUCH!!!! : )
CommentEmily - If ANY tissue has adhered to itself you should look up something called Lichen Sclerosus. Best of Luck.
CommentI just looked up lichen schlerosis and when I finally found something on it it sounds like vulvodynia. How do you know if what you have is lichen schlerosis or vulvodynia? Anyways, I don't see how that has anything to do with clitoral foreskin adhesion (as in I have to pull back on the skin and even then just the top of the clitoris peeks out somewhat.) Anyone know what the hell I'm talking about?
CommentTo Emily: My wife thought she had lichens but her gyn took a cell sample and said it was negative.I have written before that her labia on one side looks normal and the other seems small and adhered to the side. If you can arrange to see a endocrinologist you might be able to exclude hormnes as a problem. The one my wife saw said lack of estrogen will of course cause some of the symptoms such as tearing and atrophy. Her levels were normal but she still had and has these problems. Vulvodynia is all these unexplained things, I can't understand why they can't figure out what is causing the skin tear. Something must be lacking or inflaming the skin suddenly. Is the adhesion you talk of something new or something you just noticed? Like many women my wife could not even properly see where the tear was or how her genitalia was changing. Her old gyn seemed uninterested in her complaints of pain and didn't take a close look to find out. I don't want to sound rude in any way but we must recognize what normal should look like and from Gray's Anatomy to adult publications there are plenty of pictures available. Best of luck and sorry for the intrusion in this very personal matter.
CommentHey Emily, Check out"The clitoris.com" site talks all about clitoral adhesions and releasing them.
CommentHi everyone, I have been aware of this website for about 6 months now. My problems started about a year and a half ago when i met my current partner. I noticed that i had a burning sensation that never went away, i thought it was a yeast infection, although they where always usually itchy. I was prescribed pessaries, creams etc, which made the problem worse. I could not understand this so i had several swabs, a couple came back saying there was yeast present, a couple came back saying nothing was wrong. I also tried diflucan which did nothing. This went on for months, and caused me severe depression, i was also suffering from severe backache and ibs. I had to go on anti-depressants (prozac at the time), luckily my partner is brilliant. I could not bathe or wash in anything. I decided to go to the local std clinic to see if they could help me as my doctor could not. He immediately diagnosed vulvadynia, hence the reason for me knowing about this website. I have spent the last few months experimenting with different things. I personally believe that it is a combination of different factors that cause vulvadynia/vestubillitis. Here are some of the things which have really helped me if this helped one person it would make me happy. I went back to my doctor and asked for nystan pessaries as i had tried them once before, and had no burning after three days. They are wonderful, i don't know why but they work. She did not want to prescribe them as my swab was showing no yeast but i was about to go on holiday and was ready to cancel as i was in so much agony with severe swelling and burning. I now wash with original mint source tea tree and mint shower, This has natural oils in it, tea tree and lavendar. It is really soothing. It is the only thing i can use, even washes from the doctor where no good. The doctor at the std clinic gave me some epaderem which is made from emulsifying wax and yellow soft parrafin. I ground some of the pessaries in a pestle and mortar melted the epaderem in the microwave, mixed them together and use this on my vuvla which is always very red and inflamed. I usually find my problems worsen after sex, i dont know why. I have read scores of books in the past year and a half, and have persuaded my doctor to refer me to the coloposcy clinic. She done this in June and it is now Sept. I have not even got an appointment yet (i live in the uk,Scotland) I have asked her to do this to check for hpv infection as this can cause repeat yeast infections, vaginitis etc. I have also been tested for food sensitivity, and wheat and dairy where the two main foods which i had severe sensitivity to. This has also made a big difference to my health. It is worth getting tested for this. A good book to read is womens bodies, womens wisdom by Dr christiane Northup. There is a lot of excellent information in here. I have now been using nystan pessaries for about 4 months constantly. Life in unbearable without them. My doctor cannot understand why they take the pain away but i intend to stay on them until i found out exactly what is causing this. I also take a good probiotic everday and a timed release vitamin. This is especially good if you suffer stomach problems as well. Thanks for reading this and good luck to everyone. Keep experimenting with different things, as eventually you will find something to get you through the days. I have now given up anti-depressants as they where just masking the problem not getting rid of it. I am determined to beat this, but know how unbearably frustrating it is. Just try to stay positive. Love from Donna Marie.
CommentI am 24, and have had vv for over 3 years now. This all started when I had a c section 3 years ago, and then nursed my baby for 13 months. I kept complaining of having severe vaginal dryness, and was told that after I quit nursing everything would return to normal. Needless to say, it didn't. I have basically tried everything from elavil, estrogen, progesterone, testosterone, herbs, vitamins, steroid shots, and even had the area excised. I only have pain when my husband and I attempt intercourse. The pain is really bad during, but much worse immediately after. I will swell to the point that my insides feel like they are on the outside. I just want some relief from this disease. My husband has been supportive, but is now getting to the point of wondering if we will ever be able to enjoy our selves again. And to tell you the truth I am at that point too. We would love to have another baby, but right now that is out of the question, because the pain is unbearable. Every time we try, I end up in the bathtub for up to 3 hours in agonizing pain. If anyone has any suggestions please email me and let me know. I will gladly accept any advice. Thanks
CommentI just want to add a few comments about what has helped me. I had been diagnosed with lichen planus after 3 years of discomfort, burning and some itching, painful intercourse. I went the steroid, antibiotic route, which only helped briefly. After talking to a holistic doctor, she said there is some thought that lichen planus is related to yeast. So, I did a month of gynatren to put the good bacteria back in the vagina, and I also take Healthy Trinity which is one of the best probiotics on the market. I also take a multi-vitamin, Vit C, and evening primrose oil which helps a lot with vaginal dryness. I take a women's formula of red clover, Dong Quai, and Black cohosh. These utilize the hormones that you have, but does not provide hormones like hormone replacement therapy. I have been 90% free of symptome now for 5 months. I have occasional mild burning for a few hours after intercourse, but the act of intercourse doesn't hurt anymore. Sometime there isn't any burning. There is a part of this that has to be addressed that helped me the most. I was taking the steroid cream, etc., and still not eating the healthiest diet. I believe that sugar plays a big role in this. I used to eat a lot of cookies, candy, etc., and when I cut that out, my condition improved so much. Now I bake with stevia powder , and use it in my tea. I only have table sugar on a special occasion like a birthday. I think that for you women that suffer with the yeast you can't just take the diflucan, monistat, probiotics, and then eat sugar a lot. I know because I did that and my condition didn't improve.Just think on that. I believe that it really played a roll with me. I would pass the cookie jar, and have one many times a day, or chocolate. So, if you are going to tons of doctors, and spending all that money, but not looking at your diet, than you may never improve. The hardest thing for me is baking things for my family, and not being able to eat it. But, I feel to good to eat it, it isn't worth what I felt like before. I eat fruit, even bread in moderation. There are stevia cookbooks, and while it doesn't taste like sugar, it satisfies me and my sweet tooth. I also use basis soap, and wash my underwear in Seventh generation free and clear soap. I have been reading all these entries about yeast infections, and I thought I should address this issue. Sugar can alter your immune system, do you know that when you eat table sugar it paralyzes your immune system for 2 hours? So if you eat sugar all day long, your immune system can't function , and other disease processes take over. My lichen planus is caused by an over active immune system, and possibly yeast overgrowth in which the table sugar probably played a big role. I hope this helps any of you. I know it can up to a year of taking probiotics to get full improvement, and sometimes I have a small setback, but I am moving forward. I hope the same for you.
CommentThese two recent comments about diet, sugar, dairy, wheat, etc. are very interesting. Today I began something called the Specific Carbohydrate Diet - you can find lots of information about it on line, but I recommend the book "Breaking the Vicious Cycle". The diet is aimed at intestional disorders, but explains how certain carbohydrates and sugars feed intestional yeast and bacteria - and I am starting to think that leads to a host of disorders (not just intestional). I wish you all would look into this and post what you think about the theory behind this kind of diet. Coincidentally - the diet is very similar to that which is recommended for interstitial cystitis. IBS, VV, and IC all have a little too much in common to ignore!
CommentJust attempting to garner as much info. as possible! I've been living with this pain for over four years and have been through over a dozen doctors. I'm exhausted.
CommentJust curious: does anyone out there know of any disability attorneys in New England, preferably Massachusetts, who specialize in vulvar disease, not just chronic fatigue and fibromyalgia? thanks.
CommentFor those of you in the NJ/NY area, there is a very good study being done through UMDNJ in the New Brunswick NJ area. It has several phases including diet, self management (intra vaginal massage, positive thinking, support group with psychologists, etc, and medications (ie steroids). I suggest you call Ms. Joan Hammond at (732) 235-7799 for more information. I am not cured having gone through it but I have developed coping strategies and met other wonderful women with vulvodynia. It was well worth it! Good Luck and good health to all of us. (PS I have heard that there are 5 or so studies taking place throughout the US but I am not sure where these are happening. Perhaps check with major medical institutions in your area or contact NVA or VPF for details.)
CommentI have recently been experiencing 'some' relief from my constant vaginal burning. For the past several weeks I have been on an ultra low low oxalate diet and have eliminated all irritants from my diet (chocolate, carbonation, vinegar, citrus fruits, alcohol) and anything containing these items. I have also started spritzing off the vaginal area with cool water after each urination. At first I thought that would be a pain since I urinate so much but it's not. And the coolness of the water actually feels good. I still have some burning and intercourse hurts but I have gotten some relief and wanted to share. Thanks! Lisa
CommentWhoops, I forgot to mention that along with the low oxalate diet I am drinking TONS AND TONS of water. That really seems to help even though I am going to the lieu all the time! Also, I write down every morsel and sip that enters my body. That way if something bothers me I can see what it was without having to guess. I also track my pain and burning levels to see how food/drink intake correlates with that.
CommentI would like to join a live chat about vulvodynia, however upon clicking on "chat" i am forwarded to a yahoo group solicitation, I have on numerous occasion tried to use Yahoo groups. It is so complicated that it is of no use. And no one to contact about what the problem might be. Please a plain and simple chat that works!!!!
CommentI agree with Dottie. The chat feature is useless!
CommentAmen to that. I did all of the sign up stuff, and receive all of the emails containing recent conversations between participants but when I try to put in my two cents it says I am not a member. But when I go to sign up it says I'm already a member! Perhaps we should be talking to Dr. Glazer...
CommentI was hoping to get in touch with Laurel. I seem to match your symptoms exactly. How is treatment and where is your doctor located. I am in Southern CA and would love to know of a doctor who has successfully treated this. I had my first bout with this a year ago when I was really stressed. It has come back exactly a year later. My Gyn doesn't have a clue as I am seeing is quite normal after reading many peoples comments. I responded well to Flagyl but it makes me really sick. I am willing to be really sick for a couple of days to get over this!!! Please email me privately if you want. I would appreciate your help. Thanks!!!!
CommentDoes anyone know how I might go about being tested for the gene that is often associated with VVS? I live in California.
CommentThe only doctor I know of that tests for this gene is Dr Ledger in NYC. Perhaps you can call his office and get a referral??? Good luck, Lisa in NJ
CommentTo the one that asked about being tested for that gene, please check out two entries, one on 7/27/02 from Susan and one from 7/27 from Karen. I hope this helps. I want to check out what Karen said myself.
CommentTo the one that asked about being tested for that gene, please check out two entries, one on 7/27/02 from Susan and one from 7/27 from Karen. I hope this helps. I want to check out what Karen said myself.
CommentDoes anyone know what the gene is called? Thanks Lisa
CommentThis is my first time posting. I have been suffering from this disorder for about 15 years. It started with my first sexual partner. I was treated for yeast infections in the beginning which did help at the time. Just about 4 years ago, I went to my Gyn for this condition, he never saw anything and I would leave feeling really depressed. Finally, he put me under a microscope and did a biopsy. It came back positive for HPV. He said most of the time it is invisible and can only be seen under a microscope when a vinegar solution is applied. He said I could have had this for 20 years or longer and it could have rested dormant. He then applied an acid solution to burn the tissue. This never really helped. Last year I had a baby and I was great for about 8 months afterwards. I have recently gone back to him because my symptoms were starting again. He told me that he hears this everyday!!!! Women come in complaining of burning pain. I asked him what is was and he said it is this virus. He said it is in epidemic proportions. It weakens the tissue. He also said the immune system has a hard time getting to the skin's surface to kill it. The race is on to find a vaccine for it. This vaccine will kill the virus if you have it and will protect against it if you don't. He said Merck is doing clinical trials now on a new drug and should be on the market in about 5 years. Just a few weeks ago, I was at the hairdresser's and we started talking about our Gyn (we go to the same one) and she said I have to talk to him about this burning pain I'm having. I couldn't believe it!!! It is a lot more common than what we think, people just don't talk about it. I have exhausted every resource concerning this. If anyone knows that they have HPV, maybe you can get involved in a clinical trial in your area. There are none going on in my area. I would love to know if this vaccine will be the cure.
Commentjust wanted to add one thing about the HPV. When my pain started in 1992, i had every test known to mankind including a painful colposcope, and nothing was found. Then he checked for HPV, and said that yes, I had it but they never saw it before because there were only a few, and they were deep within the (internally) vaginal folds. So from then until November 2001, I thought that was what I had. Then I went to see Dr Davis, and after a full exam and cultures, he was confident that's not what I have. He said absolutley not. You do not have HPV. So, while some may, I think many of us are told thats its viral when there is no other solution. I thought I had this for 9 years so make sure that there is an actual test that is positive before you go ahead with any kind of treatment.
CommentThanks Laurel for your input. I would love to think that this isn't viral, but if it is the invisible flat kind it can only be detected under a microscope and then biopsied. A regular exam and cultures won't pick it up. I went years before it was found and every culture and every exam came back normal. But, I hope you are right!!!
CommentThanks Laurel for your input. I would love to think that my problem isn't related to HPV, but deep down I know that it is. When the vaccine comes out I am going to be the first one in line!!! Anyway, you said that you were cleared from having HPV. But I know from my own experience that if it is the invisible flat kind it can only be detected under a microscope and then biopsied. A regular exam and cultures won't show it. Mine went undectected for years and I have had many many exams and cultures. But, my doctor told me that some women can fight it off or it can go into remission.
Commentfor cassidy: you are right. I recall being told many people had it without ever knowing it. I am sure that there are different strains of it. But if you do have it, its very passable to partner. Some people remain always in remission. I think that its important to be careful. When I was told I had it HPV, I never thought it responsible for my v.v. I think its all the years of antibiotics ruining my immune system (I think mine is candida), giving me the proctitis, and with that foods are an aggravator. Always my pain is worse after a big meal, or certain foods even if its low oxalate, the burning usually starts within 2-6 hours, and I just have to wait it out until it passes through the stomach. Water is a huge help, and it usually passes within a couple of hours. During a flare up, it can last for days. I wish you well in your course of treatment! laurel
CommentI was wondering if anyone has had experience with the Kegel Exercises. I have had problems with burning with intercourse, but sometimes we don't have intercourse for a month or two, and then when it occurs I get this soreness. I am wondering that from the lack of intercourse that my PC muscle is really out of shape and could be causing the soreness when we are intimate. I also experience incontinence if I have a bad cold and cough. If I do a series of ten or twenty kegel exercises sometimes the area just inside the vagina is sore or burns. I am wondering if this could all be related. Any thoughts? After all when you don't have sex you aren't using those muscles.
CommentTo D: I definitely don't buy the theory that more sex equals less pain. If you are experiencing pain while doing kegel exercises that is probably an indicator that your vagina/vulvar tissue is sore in general. Back when I was trying to pretend I was normal, I got over ambitious and started a crusade of teaching myself how to orgasm during sex. Kegel exercises was a big part of this. But when the exercises just made me hurt more I took the hint. Just wondering- Do you get a nervous feeling when you do the kegel exercises? If so, that means that your PC muscles are not toned, and no amount of exercise will get you that (since the exercises are for strength.) I'm thinking my vulvodynia may be related to weak and untoned pelvic floor muscles, in which case biofeedback would be the treatment to try, but I don't want to think about going down such an expensive route right now. Your gynecologist can actually test you and see if your pelvic floor muscles aren't performing correctly. I think I'll be getting that test soon. On another note- Does anyone know if the frequency with which you take tri-cyclics affects their effectiveness permanently? I was getting progressively better as I went from 25 to 100mg of elavil, upping the dose every 2 weeks. Now I have been on 100 for at least a month- It's lost its effect as a pain reliever but will that be true if I up the dose? I can't right now because no one is monitoring my meds. Oh, and if you miss a day or two are all benefits washed away, or will I just experience more pain during those days and then experience the same amount of relief when I pick it back up again?
CommentFrank...I have not been on this site in a while, but I just read your post about your wife's OB cancelling the appointment. Although I understand why you were so angry and upset, you saved mney and time. The doc's specialty is delivering babies, not taking care of women in pain. I think most of us like to think that a doc familiar with gynocology can treat everything to do with that area, but it is not true. If a woman has ovarian cancer they see an oncologist, they don't keep seeing the same old GYN. Although it is possible that an OB can be well versed with vulvodynia, the truth is OB emergencies ARE more important...they can be life and death and your wife has been in pain for years, one more month won't kill her. I am sure you are right that some of it is money oriented (not only delivery, but the fear of being sued). I know that is awful, and I should probably word that better. Anyway, it is obvious this doctor does not specialize in vulva pain, because the doctors that have really cared for me, had a staff that really understood the condition as well.
CommentTo Jennifer: Thank you and yes we saved time and money and frustration. I am also upset that the doctors who specialize in vulvodynia are so expensive and many do not accept insurance. I feel they take advantage of the suffering and desperation these women experience. How much can they even offer? I read the posts regarding H.P.V. and what that dr. said. Both my wife and I were checked and both were negative. There has got to be something else causing the thin skin and burning and so forth. I sure hope research is being done. I read here every day and my heart goes out to all who suffer. Someday Ladies, stay strong!
CommentFrank - Not to be too personal, but exactly how were you and your wife checked for HPV? What tests were done?
CommentNothing here is too personal. I can only speak for myself right now. Last year my wife saw a different gyn who wanted me to be checked. I saw the same urologist who performed my vasectomy, he visibly examined me for genital warts, took blood and swabbed the inside of my penis which is very painful. From what I remember he said he checked for the warts and venerial disease. Nothing came back positive regarding S.T.D. or anything else he checked for. Now if there is some other test done for H.P.V. that I am not aware or if there a new test out I would like to know about it. I have only been intimate with one other woman in my life and my wife has just been with me. Nothing to either brag or complain about. I don't think for my wife H.P.V. or any other S.T.D. is at the root of her symptoms. Maybe these things have nothing to do with any of vulvodynia sufferers. We are doing our best to come up with causes such as the ones mentioned and all I've heard here including on set of symptoms coinciding with a new sex partner, anti biotic use and birth control drugs. The urologist said I didn't show any signs of any disease, can I believe him? Right now I think he did all he could and unless something was missed I guess I'm alright.
CommentI've always been told that HPV cannot be detected in men except when there is a flair up. I was also told that condoms do not prevent the spread of HPV. Was I lied to by someone who wanted me to be scared to have sex or was Frank's doctor acting like he could detect HPV without really knowing what the hell he was doing?
CommentI would like to add one more thing about HPV. It is microscopic and resides within the tissue. A biopsy of this tissue and it examined under a microscope is the only way it will be detected if there is no obvious papule. It will not be seen to the naked eye or by cultures. Unless a biopsy was done, HPV cannot be ruled out. I was also told that men are not affected by it the way women are. Men's skin is a lot thicker.
CommentI have a question. If someone has HPV and it is as they say "under the skin" and not visible, even with the vinegar test, what can be done about it? I was told I have HPV but I'm a-symtomatic. Could it still be what is causing the pain? Dr. Glazer said it wasn't.
CommentI do not know if I suffer from vulvodynia, however, I think I might because I have some of the symptoms. Sexual intercourse has been painful for years due to constant irritation of tissues. I always thought it was because of yeast infections (chronic) or the occasional bacterial infection. I do not have muscle spasm, but I have pain on entry, tenderness and swollen tissue. I cannot remember having normal intercourse without some itching, pain or tenderness afterwards. I have started using Estrace topical estogen which my gynocologist gave me when I told him I was desperate for some relief as my vagina was always torn up. He thought the skin might be too thin. I have had open sores that were tested for herpes but the tests came back negative (my fiance has herpes, however, I have never seen a breakout) I am a redhead and I have heard we have thin skin. The estrace has helped with some of the syptoms. I was recently treated for yeast infection, altho the doctor found nothing when the smear was sent to the lab. When I had sex about a week later, the itching was gone, but there was pain on entry and tissue tenderness for the next few days. Is this vulvodynia? I am desperate to know if this is a life sentence or if there is help out there. I live near San Diego, CA. Thank you for your helpl
CommentI feel as if I`m intruding `cause everyone knows everyone here! I have a question: Is there anyone out there with Vulvodynia that was caused by surgery? I had vaginal ulcers that was removed, with tissue implants and a vaginal skin graft. And I`ve suffered from excruciating pain ever since. As a last resort, my dr. referred me to a neurosurgeon, and a Rhysotomy was done. That is an operation were the spinal cord is opened and nerves are cut through to stop the pain. And that did`nt help at all, only thing that happened is that I`ve lost all nerve and muscle tone in my lower body.I ended with an Colectomy (removal of the colon) and I now have an Ileostomy as a result of that. But the most tragic thing about all this is that I still have the pain. And I cannot use medication for it as I have Porphyria. Thank you for listening!
CommentI am currently taking the pill called allesse and feel very dry from it. I have been told to use mineral oil for moisture. Has any body had any reaction from this? I also was wondering about astroglide? I have vulvodynia and have diagnosed myself with IC, after reading all of the posts I definitly feel that I have IC too. Will either of these two ointments bother my IC? I just cant stand this dry, itching feeling in the folds of my labia!!! OUCH!!!! HELP!!! Oh yeah - has anybody actually found a dr. in New Jersey that was helpful in this area? So far I havent : (
CommentHere's what I know, but I am not a doctor. It does help to wear a condom to prevent HPV transmission. The warts are on the skin, and skin to skin or skin to mucousal tissue can spread the infection. Bacterial infections like chlamydia are inside the genital tract, so it is in the semen, and transmitted that way,,,if you cover the penis it is less likely to transmit HPV, BUT if the warts/virus is on an area that is not covered by the condom, well you get the picture. False positive come back on biopsies all of the time....inflammed tissue looks like HPV, and it is important to get a DNA hybridinazation if you are told you have HPV and have vulvodynia. Some vulvodynia sufferers are red and irritated and are told that they have HPV at the microscopic level and they don't (this happened to me). Initial research/work on trying to find a cause for vulvodynia tried to find a correlation between HPV and vulvodynia, but this theory has basically been dismissed for years now.
CommentIt has been 3 years that my pain has been gone. I have 2 children, and the horrible pain that I had lived with for 6 long years just faded away during my second pregnancy. I had seen so many doctors...It was so frustrating!!! Well on Sept. 13th my pain (itchy, burning, inflamed bright red...yeast-like symptoms) came back. It is strange, because hours earlier I had an old tattoo on my arm redone (a 3 hour long session). I only have 2 tattoos...Anyways, I just find this to be extremely strange. Could my nerves be reacting to the pain???? I had 3 years of freedom from this horrible curse...why now..is it back! About 7 years ago I used Estrace, steroids, elavil, acupuncture, homeopothy, lydocaine..... The last place I went 3 years ago was Stanford Med Center...the docs gave me a device that I inserted into my vagina and practiced tightening the muscles. I thought that that was helping, but I also got pregnant, so this could have triggered the loss of symptoms too...??? I had the pain with my first pregnancy though. I have been wondering if any women have MS that have this pain...My sister has MS, and I have had some other strange symptoms of MS in my life time. I can really say that vulvadynia feels like shingles of the vulva without any sores...all I can see is complete inflamation and redness. My mother also had this vaginal pain for 6 years. She was diagnosed with vulvodynia. She is also manic-depressive and takes meds for that. She swears to me that her symptoms went away a few years ago when she started taking Depecote..Is anyone familiar with this drug?? I am just so scared right now, I am not ready to face this again. I have new insurance and have to start at the bottom again with the docs. I hate the system. I have gone back 3 times in 1 week in tears and looking for any answer or treatment to relieve my discomfort. They put me on diflucan for a week and gave me steroid cream, that didn't work...and the last time I went there he said he'd call some people and get back to me later that day. It has been 2 days and no call back. I have evn called there and left messages!!! It is so frustrating to be ignored or turned away when you are in so much pain...How can you function??!!! I would really like to talk with some other women in this area that are dealing with this. I am in the San Francisco area..Does anyone know of support groups???Thanks
CommentJennifer's information on HPV is good - but everyone should stop using the word "warts" when talking about this virus!!! There are only two types (6 and 11) out of about 70 that actually make warts. Most types are transient - then there are those types that are more likely to result in cervical cancer (about 1% of cases). Whether or not HPV is being overlooked as a cause of constant burning remains to be seen . . . In the mean time - it is true that you need a biopsy to determine if you have ever been exposed to the virus or not. (That is if it is not showing up on a pap or via warts, etc.) A normal Pap smear only means that, if you have been exposed to it, it is not active now, or your body own immune system has taken care of it. If a biopsy is taken, the lab will look for something called "Koliocytosis," which is a appearance of a "halo" around the nuclei of the cells in the tissue that they are examining. If you have koliocytosis - you've been exposed to HPV. If not - you either don't have it, or they biopsied tissue that does not contain any of the virus. If you do have it, you should have a Digene Hybrid Capture which will tell you if it is one of the 15 more dangerous types. A negative Digene does not mean that you don't have HPV either, it just means that you don't have any if the types that that test can detect. Before anyone gets freaked out - remember that estimates are that 80% of the population has been exposed to HPV. You are likely to have been exposed to it if you have had more that 4 partners. MOST of these cases are whipped by your own immune system. MOST of the time - it's more akin to having something like Chicken Pox rather than Herpes. Know what I mean?? One more thing - to the girl that has had sores that tested negative for herpes, even though her partner has herpes - Insist on a test called a blood titer for Herpes types 1 & 2. The blood test has been around for a while, but the ability to identify types 1 & 2 specificly is new in the last year. If you have been exposed to herpes your blood will have antibodies for the virus.
CommentI have had a hard time dealing with this disease that I initially knew nothing about! This site has helped me understand what is wrong with me and what I can do to help it. I just decided to stop taking the birth control pill because of what I've read about its contribution to vulvodynia. I believe that's one of the reasons that I developed this. In February '02, at 18 years old, I became pregnant and reluctantly decided to have an abortion. Immediately after, i went on the pill and that is when the pain started. Now, 9 months later, I'm still struggling with it. It doesn't happen all the time, but lately it's been hurting a lot. I know it has to do with either going on the pill or what happened last year. I first went to my gynecologist who seemed very willing to help me. He knew all about vulvodynia because his wife's friend had it. He told me to go to a dermatologist and get cortizone shots. i thought it was strange that he would refer me to a dermatologist, and why he couldn't do it himself. So I went to the dermatologist and he put me on yet another cream, consisting of nystatin and a couple other things. Just like I knew, it isn't working. It just creates more of a pain for me. I'm hoping that going off the pill will reduce some of the pain and I can be normal again, but I need suggestions as to what else I can try and if I should stop going to the dermatologist and find a gynecologist willing to help me.I can't take it anymore and I don't want to live one more day like this. I've also been on depo before, which I think may have contributed as well. Does anyone have a similar story? I'm only 19, i'm in college and trying to hold down a job, i don't need this large expense and this huge problem waying down on my shoulders. I actually think I'm becoming depressed because of this. I need help!
CommentI have had a hard time dealing with this disease that I initially knew nothing about! This site has helped me understand what is wrong with me and what I can do to help it. I just decided to stop taking the birth control pill because of what I've read about its contribution to vulvodynia. I believe that's one of the reasons that I developed this. In February '02, at 18 years old, I became pregnant and reluctantly decided to have an abortion. Immediately after, i went on the pill and that is when the pain started. Now, 9 months later, I'm still struggling with it. It doesn't happen all the time, but lately it's been hurting a lot. I know it has to do with either going on the pill or what happened last year. I first went to my gynecologist who seemed very willing to help me. He knew all about vulvodynia because his wife's friend had it. He told me to go to a dermatologist and get cortizone shots. i thought it was strange that he would refer me to a dermatologist, and why he couldn't do it himself. So I went to the dermatologist and he put me on yet another cream, consisting of nystatin and a couple other things. Just like I knew, it isn't working. It just creates more of a pain for me. I'm hoping that going off the pill will reduce some of the pain and I can be normal again, but I need suggestions as to what else I can try and if I should stop going to the dermatologist and find a gynecologist willing to help me.I can't take it anymore and I don't want to live one more day like this. I've also been on depo before, which I think may have contributed as well. Does anyone have a similar story? I'm only 19, i'm in college and trying to hold down a job, i don't need this large expense and this huge problem waying down on my shoulders. I actually think I'm becoming depressed because of this. I need help!
CommentJENNIFER: I don't know if you remember me, but we corresponed last year re: Dr. Toth. I tried to email you at your old address, but it was returned as 'non-existant". I wanted to ask you if it is ok to give your email to another woman who is interested in seeing Toth? Can you either post your email again or email me personally and give me your address? I included my email above. THANKS!! Nini
CommentI have been suffering with vulvodynia for three + years I was told by my doctor that it was associated with my Intersitial Cysitits (IC) does anyone else have both of these problems? I have found a medication that has helped me greatly with my vulvodynia called Nortriptoline. It really started to work for me after about a month!
CommentI'm 21 years old and have had Vulvadynia for about eight months. My prior relationship ended due to my condition and the unbelievable stress it caused our relatrionship. I saw six doctors before I was diagnosed. I was perscribed amitriptyline to block nerve pain (it's an antidepressent) and temovate. The amitriptyline worked for about three weeks, so I thought I was getting better. Unfortunately, I relapsed three days ago and have been in so much pain I haven't left my house. This condition has cost me a relationship, my part-time job and has greatly interferred with my collegiate career. I have been disheartened even further to hear of so many of you that have had this condition for decades-plus. I live in Oregon for school, but my family still resides in the Northern Bay Area region of California. Does anyone know of specialists in either of these areas? I'm losing hope fast. I've always had a high pain tolerance from sports etc., but this is one pain issue that has worn away that stoic wall.
CommentTo Hilary: Please describe your pain maybe one of us can suggest something. Internal, external, burning, itching?
CommentHas anyone ever tried colloidal silver as a treatment for vv?
CommentTo Lindsey: Don't waste your money on colloidal silver, this illness is beyond that!
CommentMy pain is intense burning and an overall stabbing feeling. It occurs right inside and the immediate opening of my vaginal opening. Nothing releives the pressure; changing positions ice, nothing seems to help. I don't have pain constantly. I call the pain "attacks" because they will come on all of a sudden, seemingly unprovoked. When they occur, they can last anywhere from an hour to five or six days. The worst ones usually occur 24 hours after sex. This has made me avoid sex altogether. I'm not sure what other self-medication to try. I feel as though I have tried every hair-brained idea to see if anything will work. Ultimately, I am reduced to riding out the attack. I would really appreciate any further ideas anyone could offer me.
CommentTo Hilary: I hope you get some good suggestions here. I have been reading and posting for a couple of years now and I have read that trauma to the pelvic area sometimes causes nerve impingement( Spelling?) the pudendal nerve travels through that area. The only reason i mention this is because you wrote of being activve in sports and having a high tolerance to pain. Think back even to childhood, if you have had such an injury then maybe treatment focused on that may offer some relief. Women here talk of nerve entrapment and different therapies which sometimes help. Stay strong and best of luck.
CommentHi Everybody, After reading various posts of late regarding shingles and herpes, I was wondering if anyone has tried l-lysine therapy. I've been reading about lysine and noticed some correlations between the action of lysine on various herpes viruses and some of our therapies. The low oxalate diet and the one for herpes were very similar ie no coffee, chocolate, nuts, wheat, these are also high arginine foods which the virus needs to replicate. Lysine also has some fundamental role in calcium absorbtion. With the lingering pain from shingles and the zoster thing, the treatment is anti-depressants. So maybe while the viruses are lying dormant in the nerves, they're causing that ripping sensation. I didn't get chicken pox until I was 15, and I get the occasional cold sore so I know I have some of the virus. The lysine is cheap and seems safe enough, but there is a problem with it if you are pregnant. The viral approach is one I haven't tried. I posted awhile back trying ketonozole for yeast, which started out promising and then worked less while I was taking it, and I feel terrible about not writing that I ultimately bombed on that. I think the combination of my desperation and the financial burden make for a powerful placebo effect. My rite-aid also has a cream, super lysine+, which has all the cool ingredients, A,D,E, olive oil, goldenseal,echinacea, tea tree, zinc, with the lysine. Very soothing. I've been going with this for ten days now, 1000mg lysine, 3 times a day. Redness down. I'm going to do this for three weeks and I'll write. I know some of you aren't down with the do-it-yourself thing, but what I do pales compared to the crap shoot that's been done on me over the years. Has anybody tried this?
CommentTo M: That was excellent information!! You sound as though you have a medical background and a lot of knowledge in this area, in particular. Do you know anything about the HPV vaccine? I believe it is being overlooked as causing this problem. How can something that isn't meant to be there invade the body and not manifest itself in someway? After all, other viruses that invade other parts of the body cause some type of illness, right?
CommentI'm having a hard time understanding how drs can tell someone with this condition that they see nothing unusual and/or no abnormalities as they have me, when you know darned well you are beet red. Isn't being beet red considered unsual? Surely they have to know that all women do not look this red?
Comment!GREAT website with lots of usefull and ineresting info. Easy to navigate - and the design is nice too. Another great website is http://www.a3-viagra.com and http://www.a3-viagra.co.uk where you can buy viagra online. Also, take a look a http://www.aabaaca-penis-enlargement.com
CommentMary, what is the name of the stuff you get at your rite-aid? Is is just called super lisine+? Thanks.
CommentPamela nonone here needs viagara you idiot. You need to be posting on a a website for men's problems.
CommentTo Benell: I agree with you, my wife complained about pain after sex and her gyn saw nothing. He prescribed several creams and still the pain and he saw nothing. Then she said to me do you see anything and pointed to the six o'clock position. I saw what looked like a paper cut tear, I had to point it out to her doctor. I'd like to know what is with these folks, are they just too busy? This is the same doctor who when my wife went to his office for a mamogram saw her in the hallway and turned his back without even a hello. She had ben his patient for twelve years.
CommentI have suffered with Vulvadynia for over 25 years. I've tried a million remedies and medical experiments, nothing worked. I've dedicated myself to figuring out what causes Vulvadyia. I've always felt that Vulvadyia is a "modern" illness. What within our lives within the past 30 years or so has caused this epidemic? Without going into my verrrryyyy long history and what caused me to come to this conclusion----I would like you all to try this: Avoid all food dyes. Yes, no Koolaid, soda pop, any drink with any dye. No cereal or cookies, etc. with dye. NO ANYTHING with dye in it. I also eliminated all makeup (a really tough one to do I'll admit) because the dye soaks into your skin and your body does have to deal with it internally, even nail polish. I just began this regimen last month and have seen a marked improvement with my vulvadynia, almost 99% relief. Please, please give this a try. It can't hurt and might possibly help. God Bless! Dee
CommentHi, I am writing as a person who has suffered from "vulvodynia" for over 4 years. I have seen countless doctors and my wonderful parents have spent thousands of dollars trying to find me the magic pill. It all started when I was 19yrs old and one day it burned when I had sex. All of a sudden there was something wrong and after going through numerous medications and diagnosis, I have finally begun what I believe to be a path to getting better. I have been on Elavil, Neurontin, every anti-fungal (topical and oral), biofeedback therapy, manual stretching of my vaginal canal and vulva (2 times!!) and interferon therapy. Besides the biofeedback therapy which helped relax my abused musles, nothing worked. In addition to being diagnosed with "vuvlodynia", I have also been diagnosed with interstitial cystitis and pelvic floor dysfunction. The IC was later recanted after I had the procedure which can defintively tell you if you have it or not and then the pelvic floor dysfunction was determined to be the problem from all of the stress down there!!!! I spent all four years of college miserable and feeling inadequate and hopeless until finally this Spring, I told my mother that at 23yrs old I was going to have to quit work and move back home bc I was going to jump out of a window. That is when out of desperation she called her reg gyno and he told me to call Dr. Peacocke. I went to see Dr. Peacocke and she confirmed what I had been suspecting all along. I was taking a low-does BC pill, LoEstrin, and it had dried me all up making me more susceptible to bacterial/yeast infections, etc...Every single doctor I had seen over the years had outrighted refused this theory!! Finally I felt someone understood. I have been seeing Dr. Peacocke since June and I am 80% better. The first week I felt like a million dollars after taking the oral antibiotics and starting VagiFem, a tiny estrogen pill that is placed in your vagina. However, I have had problems keeping the bacterial/yeast balance...but I am hopeful. I am not writing this to make every woman who suffers from vulvodynia rush out and see her. I use "" around the word "vulvodynia" simply because it is a generic term that has been coined to refer to patients who have unknown burning/pain. However, and unfortunately, it is up to you to figure out with the help of the medical community what is causing your pain and that is why some women have amazing success with a certain doctor while others perhaps get worse on that specific treatment plan and Dr. Peacocke is no exception. I know this because I have read things from other women that swear by the anti-fungal route with Dr. Gae Rodke and have found success - that route however left me red, raw and miserable. Unfortunately for us there is no secret pill to this upsetting condition, but through supportive and informative posts on websites like this we can share the information that we have labored for and help each other one at a time.
CommentI have a very hard time believing that nail polish can be absorbed into our bodies. I don't think eliminating makeup and dyes is going to help. These are the few things that make me feel like a woman, and after suffering with this disease and not being able to have sex for years, I'm not giving up the things that make me feel feminine. Maybe some of you will want to try the dye-free idea, but not me!
CommentBelieve it, your nails are porous!
CommentErin: It's great to hear you're doing so well after suffering so long. One question... Were you infection prone? Did doctors routinely take vaginal cultures from you? I'm curious because my cultures never show anything amiss and I don't get infections so my instinct is your solution wouldn't work for me. But I thought I'd ask. Thanks, Lia
CommentI have been diagnosed with Vulvodynia for 4 months and it has been the worse 4 mths of my life. I am very discouraged and depressed. I feel like I will never be cured. Does anyone truly get cured. I have spoke to 2 doctors who believe I will get cured. Is this false hope? Veronica
CommentHi, For whomever wrote about the L-lysine+ cream, it's in my rite aid with the coldsore stuff. Made by QUANTUM. Small 7gram tube was around 6.00. But you don't need much. As far as the tests go, they're too expensive and I don't trust them. Also it seems there is plenty of people with all kind of yeasts, bacteria etc. that don't have that ripping. Funny about the redness post. Eighty percent of the doc's I saw claimed not to see it. It was so obvious to me. It made me not trust them right off.
CommentDoes anyone else here have their pain level and redness increase as the stress level in their bodies escalates? I have this increased burning when I am under a lot of stress or in an argument. Also, regarding oxalates, when you pass urine, is it because the urine has a high oxalate content that it burns the skin or is it because the oxalates are in your system??? I find that rinsing after urination helps but does not eliminate the problem. Please post if you can offer some information regarding this question. Thanks
CommentErin: Does the VagiFem have to be prescribed or can you get it over the counter. I do was on loestrin- the form of birth control with the least amount of estrogen- after being too nauceous for too long on mircette (2nd lowest estrogen-wise.) This is after 2 years on depo-provera, though, and I'm pretty sure that is what fucked me over the most. Would applying estrace provide similar relief? And in response to the post about stress: Oh my God do I sense a difference when I am under stress. I was doing so well, comparitively, at the end of the summer but since I have been back at school I am experiencing my worst pain yet. It even happens with sudden stress like being nervous, worried, on edge, overhearing an argument, writing a paper, being frustrated, even being sad makes it worse! I'm thinking this may mean biofeedback working with relaxing the muscles may be the route for me and possibly for you too.
CommentI recently (July-now) starting wearing nail polish on my fingernails and toes, and I haven't noticed an increase in vulvar pain at all---actually this summer has been the most pain-free time in the past 5 years! I also switched lipstick colors and am wearing a darker shade than before (more dye!). I don't buy the dye theory personally.
CommentErin - what birth control pill are you now taking? I too, am taking a low dosage pill and i swear it has sooo much to do with the dryness. I get my period for only about one full day - i dont think thats normal - can you recommend a different birth control pill to me? thanks!!!!!
CommentI'd like to comment on the nail polish thing. I remember reading somewhere about women using nail polish with lead in it and the lead got into the blood system. Also something about certain things thinning the thickness of the nail thus allowing the body to absorb whatever is in the polish. I don't know if any of this is true maybe polishing your nails does just the oppostie and protects them.
CommentHi, I am writing in response to a couple of questions that were directed to me. Lia, before I started the BC pill, I was never really infection prone at all, but that is because, I believe, the vaginal environment was at proper levels. I started taking OrthoTriCyclen as my first pill and later switched to LoEstrin due to mood swings and weight gain. I had experienced a few minor bladder infections and perhaps one bacterial and one yeast infection before LoEstrin. I believe that I have had a bacterial infection/minor yeast infection for years. The last couple of doctors would actually refuse to culture me telling me that I did not have a bacterial infection and the last one before my current doctor would only focus on yeast. I believe that you can have a level of bacteria/yeast that will cause you discomfort even if the lab says it is in normal range. But I definitely warn you not to keep focusing on those meds or that solution if you are not seeing any results. You may also want to try estrogen therapy. I would like to also note that twice during the past 4+ yrs I stopped taking LoEstrin. The first was early on when one doctor, who I would later recognize was completely right, told me to stop taking it and start taking Ortho again bc I was all dried out and yeasty and raw. I eventually went back on it again per direction of another dr!! Not too smart. And then again early this year I stopped taking the BC pill altogether on inklings I had that it was the source of my supposed yeast problem, although my dr advised against it. I was correct in stopping the pill, however, I also needed antibiotics/antifungals at the same time which I never received until this summer. Emily, VagiFem is a prescription. It is one of the most amazing meds in the world, personally for the results, but also because it is a tiny pill that you insert and you never even know it is there!! unlike the messy creams that can also irritate or so I have heard. Jen, I am not currently taking any BC pill right now. It is a pain bc when I do have a boyfriend I need to use condoms which I am sensitive to as well, but lots of good lubrication helps out with that. Which comes to another point - Women who are very sensitive and need lube should really look at using AstroGlide and not KY - I found KY to be my enemy - just a sidenote, not sure if it will help anyone else. I don't plan on going back on the pill until everything has equalized and I know that I can handle it. I need to be able to tell when I start taking the pill if I am experiencing problems due to the pill and currently I have not reached that level yet. It is a long road ahead to undue the environment that the pill has created for me, but any girl who is taking the BC pill should look into this as a possible cause for your pain and discomfort, especially LoEstrin. I have had two friends who have complained of discomfort during sex and both have had amazing results by switching pills or stopping the pill altogether. All of my problems started with the pill if I look back and think about it. Just something to keep in mind. Please respond with any questions if I can be of any help. It is my so close to my heart that I can share with you all that I have been through and all of the things I have learned and doctors I have seen. And Veronica, yes you may have a long road ahead of you, but you will get relief. Don't give up - it is hard and it sucks, but you will get there. My advice to you is to do all of the research that you can and then find a doctor who is kind and listens. You may need to guide them as well, but through this sort of investigating what has happened to you in the past and what is happening now you will find comfort. Stay Strong!!!! Sorry this was so long.
CommentI wasn't going to post until I'd been taking the l-lysine for three weeks but I read some interesting stuff last night and I'm hoping someone will post who's tried the virus acyclovir route. Did it work? What do you think? Alot of the stuff was medical journals and difficult to read but I hope my intent is clear. It seems with this zoster thing, after you have chicken pox, the virus goes up in your nerves and pretty much stays there unless you get shingles. It happens to older people with winding down immune systems but can occur after a traumatic infection. Then there's all kind of symptoms. There is something called zoster sine herpete, or herpes without lesions. Also Allodynia or other pain. Pain is described as specific sensitive area with burning and a tearing sensation. Cystitis as well. I'm forever trying to come up with something that ties us together and the ripping seems to be the one. Alot of women harbor various organisms and don't rip. I'm sure if Dr. Toth could get a healthy non-ripping woman to pay him $600, he'd find all that obscure stuff. I would venture that, we all rip, we all had chicken pox, and alot of us came to this on the heels of some infection. It could explain why the girls who are virgins have it. How would they know? I don't rip if I don't have sex. I'm wondering if the post childbirth group all had some infection or difficulty involved. The problem is that the vestibule is never mentioned in this context. I don't know why, herpes loves openings. I realize this is reaching, but do you guess since we all saw gyn's, they were only trained to see herpes in their context, so allodynia becomes vulvodynia? The whole straight medical world is a 'forest for the trees bunch' to my mind. In the 20 years I've had this NOT ONE would venture an explanation for my conviction that this began after nearly dying from an IUD infection and the yeast infection that followed. The other problem is l-lysine, with it's proven track record isn't meantioned as therapy. But again, the stuff I was reading was all coming from the straight camp. I can't count the number of times I would try to talk up an alternative therapy and the absolute condescending smugness I would be met with. Even after six visits, with no relief, when the Dr. would be getting too ashamed to charge me anymore and had to tell me I was nuts. I'm far from saying I'm right but I would like to know why I'm wrong. It would follow that there would be no such thing as a herpes sufferer on l-lysine maintenance, with vulvodynia. If there is, pop this theory now. It's going great. You know how, when your trying something new, and you spent alot of money, and your desperate and nuts and you wake and debate whether your in pain? This morning I didn't wonder a bit and that's never happened.
CommentThis is for Erin--thank you so much for making me realize that I know where all my pain is coming from--the birth control pill. Last night I was laying in my bed and I remembered when I was on the pill for a brief period a couple of years ago. I had itching, and irritation which I thought was a yeast infection, so I went to the doctor. She told me then that nothing was wrong with me and gave me cortizone cream. I eventually stopped taking the pill for other reasons and eventually, the irritation stopped. I never even realized until now that it was probably the pill that was causing that. Because a couple of months ago when I started the pill again, that is when the pain and irritaion stopped. I would bet money that when I stop taking the pill, the pain will go away. I am stopping today! Just a question--how long do you think it will take before I feel reliet?
CommentThis is for Erin--thank you so much for making me realize that I know where all my pain is coming from--the birth control pill. Last night I was laying in my bed and I remembered when I was on the pill for a brief period a couple of years ago. I had itching, and irritation which I thought was a yeast infection, so I went to the doctor. She told me then that nothing was wrong with me and gave me cortizone cream. I eventually stopped taking the pill for other reasons and eventually, the irritation stopped. I never even realized until now that it was probably the pill that was causing that. Because a couple of months ago when I started the pill again, that is when the pain and irritaion stopped. I would bet money that when I stop taking the pill, the pain will go away. I am stopping today! Just a question--how long do you think it will take before I feel reliet?
CommentThis is for Erin--thank you so much for making me realize that I know where all my pain is coming from--the birth control pill. Last night I was laying in my bed and I remembered when I was on the pill for a brief period a couple of years ago. I had itching, and irritation which I thought was a yeast infection, so I went to the doctor. She told me then that nothing was wrong with me and gave me cortizone cream. I eventually stopped taking the pill for other reasons and eventually, the irritation stopped. I never even realized until now that it was probably the pill that was causing that. Because a couple of months ago when I started the pill again, that is when the pain and irritaion stopped. I would bet money that when I stop taking the pill, the pain will go away. I am stopping today! Just a question--how long do you think it will take before I feel reliet?
CommentThis is to Erin---Thank you for making me realize what's causing this pain--the birth control pill! I was laying in bed last night and I remembered that a couple of years ago when I was on the pill, I had this irriation and burning, and my doctor told me nothing was wrong with me. Eventually I went off the pill for other reasons and I hadn't even realized that it was then that the irritation stopped. When I went on the pill a couple months ago, that's when the pain started, but I thought it was coincidental. I'm on a low dose pill called estrostep, but I've stopped taking it. Just a question--how long do you think it will take until I feel relief?
CommentHi all - just wanted to respond to a few of the recent (and really good!) posts: ERIN - I hear what you're saying about Birth Control Pills, but before everyone gets all psyched up to blame the pill - I think there is one obvious thing that needs to be pointed out that is constantly over-looked: If you are on birth control pills - aren't you having unprotected sex???? So many say this all started with the pill - when you are on the pill, isn't so you can be in contact with a man with no barrier protection?? I don't have a medical background - but I have been searching every piece of information I could find over the last two years. What I know about HPV I have found for myself - but ALWAYS confirmed my information with my doctor. I was on BC Pills for 15 year with absolutely no problems (Demulen 1/35). My problems began 7 months after a new partner (though HPV can lie dormant for years, average time before it shows up is 3-8 months). If you use Google to search on HPV vaccine, information about numerous vaccines comes up. The article I found interesting was on MSNBC and delt with a Dr. Tristram in Wales. Not only was the vaccine working, but it was stopping cancerous cells in their tracks. The catch is - for this to ever be taken seriously as a possible cause of VV - we would all have to have biopsies and if HPV is found, have it typed. I would love to know if those of us who have it have similar types that are also not cancer or wart types. That would be interesting to find out!! To MARY: I don't think we all tear with sex, I have never had that happen. I am just constantly red and irritated. You can have blood work done to check for zoster viruses, maybe you should look into it. To whomever wrote about Dr. Peacock - I have not been to her myself, but have spoken with women who have. If you look higher in this book (or it might be book #18) You will find some not-so-flattering information from numerous women who have seen her. I'm the first one to say try ANYTHING that you think may help, and the same thing will not help all of us, but proceed with caution!!
CommentStephanie: I am glad that you were able to pinpoint what was going on with you - I was in the same boat as you and all the creams did was make me redder - I am still working on trying to get the balance between good/bad bacteria/yeast straight. I would definitely suggest that you go see a doctor along with quitting the pill. I had tried simply quitting the pill before but I needed meds to kill the infection and I also need estrogen to produce good moisture. I am not saying that you have a definite infection, you could find relief from just stopping the pill as you experienced in the past, but I would definitely have some cultures done - Good luck!! Erin :)
CommentSomething I forgot to add: Thanks for the Lystene information - I'm going to look into it. I completed a series of interferon injections in mid July. I have had no fabulous improvement, but then again I don't feel as crummy as I did this time last year either. I'll post if anything changes. I saw Dr. Toth last year and the antibiotics he prescribed me sent me into yeast hell!! To whomever said this is a modern disease - cases of vulvar burning and tearing with no fixable cause have been recorded for at least the past 100 years. You will find that if you do a thorough search for VV information - it probably has become more prominent because more women are talking about it, and by comparason to 100 year ago, being taken a bit more seriously (I know we have a long way to go on the "taken seriously" part.). Honestly, can you imagine your grandmother going to the doctor to say her vulva burns? I can't!! To follow up on my post from above - I would love to hear from anyone who is on birth control pills and also 1.) is still a virgin, 2.) has only ever had sex with a condom on top of being on the pill, 3.) Who got on the pill and starting having problems before they ever had sex. And yes ladies, oral sex counts!! God only knows what lives under men's gums!! This is really about what has been in PHYSICAL CONTACT with your crotch and when, not about virginity! :)
CommentTo M: Good post. I read that there are something like 600 different bacterias in the mouth. One other thing I used to tell the new guys who worked telephone construction with me to clean their finger nails and wash their hands before being intimate with their spouse or girl friend. We come into contact with so many chemicals, irritants and bacterias and germs and if we don't take the time to clean our nails and hands where do they end up? I myself am guilty of not being agressive when it came to oral hygene and yes it is sloppy and unhealthy. For years now I have been playing catch up and doing a good job of flossing brushing and rinsing with listerine. Did I cause any of this with my wife? I don't know but I do my best not to contribute to it now. Speak up Ladies, tell whoever wants to be intimate with you to clean up their act. Best of luck.
CommentI like you M. Sorry Toth was a negative experience for you. You had suggested the HSV blood tests for someone. It will show if she is positive or negative, but she could have become positive when she was 4 years old, from some other school child. Although, if it is negative, then it is negative! I agree it is worth doing for peace of mind. I personally think a link between HSV (herpes) and vulvodynia doesn't exist. Certainly, Herpes causes vulva pain, but this ongoing all day, for years and years doesn't make sense to me. To amnswer someone elses question I tried Lysene and Zovorax and it did nothing.
CommentIt seems like some people didn't understand my post. It's not a new herpes infection causing the pain, it's stress or another infection (why were you taking those antibiotics that caused that yeast) which causes your chicken pox virus (dormant all these years) in your nerves to emerge. It's well documented that it last for years, comes and goes and vary in intensity. I've never seen Dr. Toth, I just know what he's up to reading this. I wasn't the one suggesting tests. I haven't seen a doctor for five years after leaving vanderbuilt with my basically $500, 3 visits and tests, tube of cortizone and lidocaine. 15 mostly white guys looked at me and I HAD TO PAY. I did for 15 years though. Probably 70 pelvics. Don't you get that by this syndrome being sidelined there is a permanent gravy train of possibilities and medications?
CommentM: I agree one hundred percent with the idea that some people's problems could come from HPV or other infections and that some women have not had great outcomes with Dr. Peacocke. However, I must note, as I noted in my original entry, that everyone needs to do their own investigation and find out what it is that is truly causing their pain whether it is the pill or HPV or something completely unrelated. I believe that there is a huge relation possible to HPV considering the numerous amounts of women HPV affects and how silent it can be. Taking the BC pill does not mean that one does not use condoms. I have continued to use condoms with all of my new partners when I have attempted intercourse in the past even when certain doctors told me to stop using them because they were irritating. I suggest all women affected by this problem to find a doctor and a financial way to get tested for EVERYTHING out there. Put all of your guesses to rest and be your own detective.
CommentHi again all - Regarding the Herpes blood titer test: It will sort out and tell you if you have been exposed to types 1 and/or 2. Let's hope if you have been exposed to type 2, that it wasn't when you were 4 years old!! I agree that for most of us, Herpes probably has northing to do with this - I have never been exposed to 1 or 2. Usually shingles happen on or about the site that the original zoster virus breaks out, so if you had chicken pox all over your body - why would nerve pain come back and attack only your crotch?? There is a horrible after effect of Genital Herpes (type 2) called "post-herpetic neuralga" (spelling??) which can definately present as vulvodynia-type symptoms. If you are not sure that you don't have herpes (and no, you don't always get an outbreak of blisters) go get the test! I noticed that no one answered the birth control pill question - so ladies, which came first after the birth control prescription - sex with no barrier protection - or vulvar pain???
CommentOne more thing - sorry Erin and Mary, just rereading your posts and wanted to clairfy a couple of things: First I couldn't agree more that different things work for different people - so more power to anyone who has the will to keep trying. To anyone who wonders if I get it that a sidelined illness creates an endless "gravytrain" for doctors to have us keep trying medications with no results - My out of pocket, yes after insurance, last year for prescriptions alone was over $1,000. This year will be even higher because my insurance didn't cover the $800 that the interferon cost me. Then in the past two years I can add in my flight from the east coast to Phoenix to see Dr. Gordon Davis - my trip to NYC to see Dr. Atilla Toth - and my numerous trips to Drs. like Paul Nyirjesy, none of whom take insurance! Then, when they do take insurance there is a $20 out of pocket for each visit. Then there is the Chinese herbalist, actupuncture, herbs I've tried on my own, physical therapy - I could go on and on!!! I am very seriously broke because of this!! But to get angry about it here is a waste of time. Treatment for this problem sucks - and don't we all know it!! But I'll be darned if I'm not going to keep trying - anyone who wants to give up and complain about the fact that no one has found a cure yet is free to stop trying - but realize that we are just one group on a long list of undertreated, underrecognized, and even incurable diseases. So they are making money from us - what would you suggest we do - "I'll show those doctors - they won't make any more money from me - I'm going to learn to live with it!" - I really don't consider that an option for myself. Credit card debt is nothing compared to chronic pain!! ERIN: I see what you are saying about sex and BC pills. But really, for the point of my question, it doesn't matter if you use condoms with your new partners now - it only matters at the beginning of your symptoms. Birth control pills or not - what I'm asking everyone is did you have sex, or any other kind of contact, with no barrier protection BEFORE you started having symptoms? What are the possibilities that you caught something and just happened to be taking BC pills, so you decided that they were the culprit? I'm just asking, I am really curious. I wish everyone would weigh in on what they have done and not done in their lives up to the day their symptoms began.
CommentOOOPS!! Important correction to my last entry!! Drs. Gordon Davis in Arizona and Paul Nyirjesi in Philadelphia DO INDEED TAKE INSURANCE - just not mine. Don't want to discourage anyone who is thinking of trying to see these guys. My point was really the burden of my own expenses - not to complain about insurance. Last post tonight, I swear!! :)
CommentTonight I read about 'leaky gut' syndrome. It's when you take a big dose of antibiotics, your intestines become permeable, lots of large particles and toxins enter into your general circulation, stimulating your immune system into over-activity. Fibromylagia is thought of as connected. Doesn't all this fussyness to everything touching us suggest an inappropriate immune response. Is there anyone out there who didn't get a major or prolonged dose? The herpes thing needs such a ticket to come out of the ganglia. Has there been an explanation given for why anti-depressants remain a consistent success? I don't know it. They told me it just effected nerve pain. That's all. I would also add that this is a plausible explanation for the disparity between race and vulvodynia. It's strictly economics. That black or latin sister just didn't have the money had to either tough out that infection or maybe die. I can't complain. They saved my life. . Sometimes I'm confused by the unflagging loyalty to the medical world and 'tests' On what success is this based? I must thank Dr. Glazer here. That he provides a forum for us to basically 'tell' is truely radical. He's also right on the money with the clenching thing. His theory permanently downgraded my burning and discomfort to a tolerable level. But he never says why we clench. I just figured with all those nerves there, you'd of course start clenching. Probably make it worse. Oh well.
CommentMy vv pain started in Sept. 1997, 2 months after I got married and had sex for the first time. I had been on Ortho Tri-Cyclen for 4 months by then. I was also on Claritin, which I've heard can dry you up. I got a lot of yeast/bacterial infections in the next few years (never had one before marriage), which I think were because of semen disturbing my vaginal pH. So, I was on an endless Monistat/Flagyl cycle for a few years. I'm off the pill completely now (OTC and Claritin), have been using Estrace for 5 months and am 75% pain-free. I guess I'll never know if it was the pill, the drying effects of Claritin, Monistat, sexual activity, etc. that caused my vv. I'm just glad the pain is almost gone!
CommentTo Erin and Stephenie: I definitely correlate my pain with birth control, not meaning that I'm pain free without it, but meaning symptoms are worse when I'm on it. I think my vulvodynia started when I was about 8 so I definitely don't think that getting on depo-provera started anything, it just exacerbated it. It was easy for me to see the correlation. On two separate occassions I was birth control free for two weeks- one week each time. It was the first time I enjoyed sex (I had been having sex for 2 years with my boyfriend for 4 years who is my only sexual partner ever.) The pain came back once I got back on birth control.
CommentMy sister was recently diagnosed with vulvodynia and I was wondering if anyone knows of a doctor in the Metro Detroit area. Also my mother has been diagnosed with fibromayalgia. Are there any links between these two diseases? Thanks for all your help. Melissa
CommentM: The reason why we clench is that it is a guarding reaction. When we hurt any part of ourselves, the muscles around it clench to guard the injured part. After a while the clenching itself causes pain which causes more clenching and it becomes a vicious cycle. Hope that helps!
CommentHello everyone, I find some strength from reading your stories and advice in dealing with this hideous condition. I am 27 years old and live in Australia. My battle with Vulvodynia began in September 1999 when I was 24 years old. I faced the usual problems which seem to be a recurring theme. I had just come out of a 2 year relationship when it started and was not having intercourse. I had never experienced painful sex before, or had any STD or even a yeast infection, so to suddenly have such agony from just walking, sitting and doing those things we take for granted was very confusing and distressing. I went to an incredible number of doctors in Brisbane and was prescribed everything from anti thrush medications to steroid creams to oatmeal baths-all of which seemed to make the condition worse. By October, my vulva was extremely swollen, I could not wear underpants and I was starting to feel like no one in the medical profession believed me. I lost my social life and my ability to be gainfully employed- I mean I just couldn't walk let alone work! I lost more and more weight and became extremely depressed. Eventually I was referred to a dermatologist- the only one in my state who knows anything about the condition. She was sympathetic but apparently the medical profession here is still not completely convinced about the condition. In the end, I realised that my recovery was going to be up to me. With the undying support of my family and mother in particular, I worked at making myself phsically stronger and fighting the pain. By December 2000 (more than 12 months later) I was working part time and starting to resume a normal life. In 2002, I moved out of home and started at university. Today, I am well in the sense that I am not depressed and can do most things most days. I still have pain but I have learnt to accept it and live with it because I still have a lot of living to do. I keep the area clean and dry, wear loose underwear and rarely wear trousers. I try not to do activities to aggravate the area. I guess I have largely pushed the awful episode out of my mind. The legacy is that I have not attempted intercourse in this whole time and run away from any prospective intimacy with men. This is my greatest sadness and loss- the fear that I will be rejected because I am not normal. I would like to know more about people who have had the various treatments available and the success or otherwise of them, particularly anyone in Australia who has the condition. It is so hard to explain it to anyone else. Thank you for reading my long story and I hope that all of you are coping. Hannah.
CommentThanks for sharing your story. You are not alone. I felt so "not normal" for years too, living in shame and agony (physical and mental). But there comes a point when you decide to get back to living no matter how much you hurt because it hurts more to let the disease win over your life. We are all struggling to find our way out of the madness that this disease causes. For years, I resented my rebellious and contrary genitalia for dictating the clothes I could wear, the ways I could sit, my sex life (or lack thereof), and ruling out fun activities like biking. But I eventually grew tired of hating my own body! You've come a long way, and I'm applaud your candor and your resiliency. We are just about the same age, and I'm glad that we're learning to face this monster head on while we're still relatively young. Like you said, we've got a lot of living to do!
CommentHannah, I live in Australia too and I pleased to tell you that there is the most amazing doctor ever in our little country. I am 19 years old. I was diagnosed with vulvadynia about a year ago after sex bacame so painful it was simply impossible. My local GP recommended me to a sepcialist gynocologist called Dr Reid who has basically changed my life. I underwent surgery about 4 months ago, which sounds scary I realise. But Dr Reid said that I was pretty a severe case, and that most people can be cured without surgery. It wasnt actually all that painful to be honest, and everything looks how it should (if you know what i mean...) Aaanyway, after the surgery i have started biofeedback, which i have to do for 6 months. I have been doing it for 3 months and already things are better. Not up for sex yet, but an improvemnt i would not have believed possible a year ago. Dr Reid is really amazing. I urge you to look up his work and track him down. He is based in Sydney, but its so worth it Hannah. It really is so important.
CommentI have had vulvodynia for 14 years. I live in the Detroit area. The only specialist that I am aware of is Hope Haefner at U of M in Ann Arbor. It is a good place to start. I have been through many different treatments. I am currently taking 40 mg of Prozac a day to raise my pain threshold. I still have pain mainly after intercourse (for days after), so I try to avoid it at all costs. It is really tough on the marriage, though. I have to drink lots of water and I make sure that I eat fiber every day so that I don't get constipated. Constipation really makes my pain flare up too. I have been through the biofeedback as well, which seemed to help somewhat. Right now, I am tired of trying different things and am just living with it. If the pain is really bad on certain days, I use Lidocaine to numb the area and that helps.
CommentHi, M, in response to your question about unprotected sex, yes I was in a longterm relationship with someone when I began the pill and that was our only form of BC. It had been nearly a year of completely normal intercourse with either condoms or OrthoTriCyclen and my problems began when I started taking LoEstrin, that is why I am convinced the low-dosage pill is the main culprit for my problem. I have also been testing for STDs numerous times, although I have only had one biopsy down and that was 4 years ago when all of this began so I can not give a definitive answer or any guidance on HPV. However, I was treated with interferon injections 3x a wk for one month in Spring 2001 since my doctor at the time thought it might be something that would help...unfortunately it didn't. I am so glad to finally be involved in this dialogue - Stay Strong :) E
CommentHey - there are two Ms here . . . I'm the one who has done interferon and has been talking about HPV, BC pills, etc. From now on I'll use M1 to spare any confusion. That said - I am VERY interested in what the other M had to say about Leaky Gut, etc. In the last month I've read three books on interstitial cystitis, one by Amrit Willis, and two by Catherine Simone, and one that I've mentioned before called Breaking the Vicious Cycle by Elaine Gottschall. I read about IC because I believe that these disorders are very similar - and no one who has recovered from Vulvodynia has written a book (yet!) - so I figure IC info. is as close as I can get! Though these are not my primary problems by far - everyone should know by now that there are a bunch of illnesses that are frequently lumped together: Vulvodynia, Interstitial Cystitis, Irritable Bowel Synderome, Fibromyalgia, etc. It's very interesting to find that anyone who has recovered - and has written a book - has done very similar things diet-wise. For the past week, I have been following something called the Specific Carbohydrate Diet - which (this is the short version) is supposed to starve off the yeast and bacteria in your digestive tract. This is not a new diet!! Doctors have been using this for Celiac, IBS, IBD, Ulserative Colitis, and Cystic Fibrosis for years with very high success. Check it out. I still am a strong supporter of the viral theory - however, if this is not a virus, then something has to be fundamentally off with our bodies - and lets face it - what you eat is the very basis for your health. I had IBS (very mild, mostly constipation) for 14 years, and chronic urethral irritation (which I was told was IC, but I don't agree) for 12 years before the vulvar irritation began - and I KNOW I'm not alone with those sort or symptoms. Who else has other sympotms beside VV? It would be great if there was a section on this site where we could sort of "check-off" a list of other symptoms, medications, birth control pill use, and is which order we used/began to suffer with these things. Not just a survey for doctors, but one that we could all look at to see how our similarities stack up against one another. I feel like it may help to sort things out.
CommentHere is a posting for a new research study Married Women with Vulvodynia/ Vulvar Vestibulitis Help us learn more about the impact of this pain condition on women and their relationships. If you are interested in participating in a study on quality of life, marriage and the experience of vulvodynia/vulvar vestibulitis, please contact: Susan Theve-Gibbons, MS, PT University of Connecticut doctoral candidate Family Studies program 860-768-4851 or Gibbons@hartford.edu Study requires only about one hour for you and your spouse to fill out surveys. All results are completely confidential. You must have a current diagnosis of vulvodynia or vulvar vestibulitis, be between 20 and 50 years of age, and be currently married to qualify. No financial cost or payment to you is associated with participation in this study.
CommentTo Melissa: At the U of M, under the Department of Family Medicine, there is a Vulvodynia and Vulvar Vestibulitis section. Dr. Barbara Reed M.D. is the head of it. She is actually one of about 3 U.S. specialists listed under the professional registry on this site. You can get a hold of her at (734) 475-1321. I don't remember if that goes directly to her or if you have to ask whoever answers for Dr. Reed. No matter what you will receive an answering machine where you just leave your name and number and your primary concern and they will get back to you (usually within the day.) Then you can set up an appointment, but I have to warn you that it is extremely hard to get an appointment and there will probably be months waiting. I was leaving for school (oddly enough away from the specialist that I never knew about) so they couldn't schedule me in, but Dr. Reed's assistant was so helpful. She was the first person to take me seriously. And yes, there is lots of overlap between vulvodynia and fibromyalgia, amongt many others.
CommentHere's what I think...Leaky gut is interesting, never heard of that. I tend to think that the reason Black and hispanics are less likely to get this is because I think it is caused by infectious disease (not always) and white people seem to more often sleep with white people, and so for now, it has traveled in the white population more than others. In fact, hispanics, especially if they were raised for some of their childhood in Latin America, took tons of antibiotics, took them many times incorrectly, and could just walk in any drug store and by them. When I was in the Dominican Republic they sold them by the pill, not as a full prescription. (I don't want to offend anyone, half of my family is from Latin America). I also think that statisticly Black and hispanics would be much less likely to report vulvodynia for cultural reasons. When I said you can have HSV (herpes) when you are 4...I meant that HSV 1 and HSV 2 can both be found on the lips and on the genitals. I'm sure we all know people that have cold sores on their lips, and this is found on children too, I did not mean that a four year old had sex. The thing is the blood tests do not tell you when you caught it. As for Shingles it is very painful and can last for months. I think someone did point out that most doctors that say this is caused by herpes are talking about post-herpetic neuralgia...and I just don't think that is the problem for most of the people here. Varicella and HSV are not the same virus. I actually had zoster on my buttocks a couple times during the vulvodynia years...it took a long time to get rid of it, and I had to take antibiotics because it was infected...nightmare.
CommentHi, Someone had mentioned these NY/PA doctors in a previous email. What type of doctors are they? Did they provide you with any relief? Thx!
CommentI have been in a monogamous relationship with the same guy for two years. We live together, and I'm 99% sure he hasn't cheated on me, we're together all the time. Plus, I constantly get checked for STD's, so I don't think that's the problem. My pain started sporadically when I began the pill. To Erin: I was put on a low-dose pill called estrostep, so I wouldn't gain weight. You mentioned that a low dose pill affected your vulvodynia, that could possibly be my problem. But what is in low-dose pills that affects the vulva? I've been off the pill for a couple days and the pain has already gone down!
CommentI began having this condition after a sudden infection in my fallopian tubes. I had alot of antibiotics. If I had this leaky gut and some candida got into my circulatory sytem, then maybe forever after I'm going to react against yeast. If a normal vagina contains a 'soup' of bacterias containing some yeasts, then when I take all these tests and cultures and they come back normal, I am normal, I'm just allergic to myself now.
CommentMy pain is gone from my vulvar area, but unfortunately has moved into my urethra. The way I got rid of it on my vulvar area was by taking diflucan and using over the counter yeast medication in large amounts morning and night for weeks. It burned when I used it, but I kept at it. It eventually went away and if I didn't have this pain in my urethra, I would be perfect. The only problem is, diflucan alone doesn't do it and I can't get cream into my urethra. I saw a prior posting from M that said she had chronic urethral pain. I was wondering how you got rid of it?
CommentHi - Re: Urethral pain - Unfortunately, I have not gotten rid of it. I've had it for 12 years. It's not a constant burning or itching. But a frequent spasm/stabbing kind of thing. I was told it was Interstitial Cystitis (which I have no other symptoms of, and, at this point in time do not believe I have). But - you sound like for you - you might be on the right track. My gyno has given be diflucan for urethral stuff in the past - you can get yeast in your bladder. I don't know how you get checked for that - maybe you should talk to your doctor, try something anti-candida from a natural food store, or try an anti-candida diet. But don't give up!! It's good to hear that something seems to be working for you!
CommentAlso (from above post) I also want to make clear that though I've had the urethral stuff for 12 years - the vulvar irritation has only been for the last 2. The urethral stuff, while not enjoyable, did not really effect my day to day life at all. Sex, bicycling, etc., was just fine and did not seem to have any effect on whether I got a little "stab" or not.
CommentI have the same urethral problem that M1 and someone else are talking about. It used to seem like IC, but now I'm convinced it's not. I can tolerate it more than I could the vvs symptoms, and it doesn't stop me from living my life. Drinking lots of water so that I urinate more often and taking a cranberry pill every day has helped. :)
CommentI have never been on birth control pills and have nevr used nail polish (nails too short to matter!). I have no idea what caused my birning. It is not just the vaginal area but theentire vulva. It strated out aas a slight burning and about a week later escalated into what I would describe as scalding feeling. Dr thought UTI and those pills that make your urine orange. It was awful! I don't know which made me worse but the burning became worse than scalding! Myurine test came back showing no UTI. After that it was other tests that came back negative. Meds for vaginitis (which I never had) and boy did they burn like heck. I stay very red yet am told nothing looks abnormal or out of the ordinary. I'm no Dr but I'm not an idiot. Being this red is not normal. I gave up on drs. I just didn't want to go through invasive disnostic procedures and more meds that might make me worse. As one Dr told me "You'll just have to learn to live with it." Boy, that's a real professional answer in an age o f modern medicine! Wonder how he would learn to live with severe buring and not being able to stand,sit , have sex ....seems like we can't give up on us just because the drs have swept us under the rug. Anyone been to a naturopath? I'm now thinking alternative meds may now be the route.
CommentForgot to add that mine, too, involves the urethra. At first it didn't, but after that first round of Cipro I now have burning and strange pains there from time to time. More times than not, to be exact.
CommentMy daughter age 25 lives in Los Angeles. She has just been diagnosed with HPV and vulvar dsyplasia. In addtion she may have Vulvodynia of which I have been a sufferer for 17 years. She has been given Aldara cream and is in tremendous pain. I understand that can also cause VV. I have read that some people have been helped by it but my daughter can't stand the pain. I am looking for a specialist in the Los Angels area who can help her with this. Can anyone reccommend someone or share a similar story with some hope. Thank you, Karen
CommentLE: I saw that you asked if anyone had been to any doctors in NY - I have been to: Dr. Glazer for biofeedback, Dr. Rodke for vuvlodynia, Dr. Peacocke for vulvodynia and Dr. Moldwin for IC/pelvic floor - Hope that helps. Stephanie, in response to your question about what it is in the low-dose BC pill that causes the burning...The low dose refers to a low amount of estrogen and if you do not have enough estrogen, then you are not properly lubricated and dry and burning...Then you also have created an environment which your yeast/bacteria levels go out of control and sex hurts and causes infections. It is very similar to women who are going through menopause and they experience similar symptons and take similar meds to bring the estrogen back up. Hope this helps!!!
CommentYou might want to do an internet search on something called "Estrogen Dominance" before you start playing around with your hormones - the symptoms are very interesting. Upping your estrogen with out keeping it in check with progesterone is NOT a good idea. That's part of the reason why drs. are now realizing that HRT may not be such a good thing.
CommentTo Erin: I thought the low-dose of estrogen birth control pills were mainly a problem not due to dryness but thinning of the skin due to lack of estrogen. I can remember times where I would be dry but it seems like mostly I was too wet. And doesn't a wet, warm environment lead to yeast infections more than a dry, itchy one? I'm confused.
CommentTo Emily: The difference is your personal wetness or lubrication and that which is external like a wet bathing suit. Also warmth that comes from being trapped in clothing that does not breathe like pantyhose and many synthetic materials. Cotton rules!
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CommentMy good news: My baby (I am 6 months pregnant with a girl) DOES NOT have mommy's vulvodynia polymorphism! Dr. Ledger & Dr. Witkin tested for it a few weeks ago. I am so happy my little girl will never have to suffer like I did before I was diagnosed. Also, my risk for preterm delivery disappeared since she doesn't have the gene. I know this information is always ignored when I post it here, but it changed my life. Hoping one person will pay attention! WEILL CORNELL RESEARCHERS FIND RARE FORM OF GENE MAY BE CAUSE OF VULVAR VESTIBULITIS NEW YORK, Feb 18 -- Vulvar vestibulitis, inflammation of small glands in the vagina, is the most common cause of painful intercourse in young women. Because a physical examination does not usually find anything abnormal, the problem is difficult to diagnose. A new study from New York researchers suggests that a rare gene plays a role in this syndrome, a finding that may lead to new treatments -- and reassure patients that their problem is physical, not psychological. A study by Dr. Steven Witkin and colleagues at Weill Medical College of Cornell University may have solved the riddle of vulvar vestibulitis syndrome, a condition that has long puzzled both doctors and patients. Their report is published in the American Journal of Obstetrics and Gynecology. "Vulvar vestibulitis, characterized by chronic vulvar pain and painful sexual intercourse, has been shown (by our team) to be associated in about half the cases with a rare form of a gene that regulates inflammation," Witkin explained to Reuters Health. The gene implicated, called the interleukin-1 receptor antagonist gene, is involved in regulating inflammation, the body's normal response to any type of irritation. The study suggests that women with vulvar vestibulitis have inherited a rare form of the gene. "When an inflammatory response is triggered by any means, women with this form of the gene have difficulty ending the response even after the initial stimulus is gone... (with) the result (being) chronic prolonged inflammation and pain," Witkin said. Witkin had previously been studying a possible association between a viral infection and the interleukin-1 receptor antagonist gene using samples obtained from several gynecologists. Those received from study co-author Dr. William Ledger yielded strikingly different results than the others, prompting a closer look. After analyzing the curious finding, Witkin and Ledger "discovered that many of the samples Ledger sent us were from women with vulvar vestibulitis," Witkin said. Of the nearly 70 women with vulvar vestibulitis evaluated in their study, the researchers determined that the particular variant of the interleukin-1 receptor antagonist gene was present in over half of them. Based on their understanding of the gene, the investigators think effective treatment options can be developed to control the problem. Witkin also points out, "women were often told that the problem was in their heads, that they had a sexual problem and that they needed psychiatric care." These study findings "will be reassuring and comforting to many women that there is nothing psychologically wrong with them," he said. For women who have the problem, or suspect they might, Witkin suggests they "need to (be examined) to rule out an infectious cause for their symptoms. In the absence of infection, a genetic analysis... may provide an explanation for the problem." ...........AND SO IT DID FOR ME. I GOT MEDICATION AND ALL SYMPTOMS VANISHED... SOURCE: American Journal of Obstetrics and Gynecology 2000;192. ABOUT DR. WITKIN: Infectious Disease and Immunology The Immunology and Microbiology Testing Unit is a referral center for the immunological and microbiological evaluation of male and female partners of couples with fertility problems. Testing includes comprehensive morphological sperm assessment, quantitative antisperm antibody evaluation of sers, semen and cervical mucus and dection of Chlamydia trachomatis, Neisseria gonorrhoeae, Ureaplasma urealyticum, Mycoplasma hominis, and aerobic and anaerobic bacteria in genital tract samples. The Laboratory's emphasis is the diagnosis of difficult cases of "unexplained" infertility by employing state of the art techniques under strict laboratory supervision. Dr. Witkin is a recognized and respected authority in the field of reproductive immunoly and gynecological infections. Steven S. Witkin, Ph.D.
CommentTo Susan, I was always liking the gene stuff. but since I live in the middle of nowhere, KY, that approach is out of reach for me. Can you tell us what the medication was?
CommentMary: Just have your doctor gets in touch with Dr. Ledger or Dr. Witkin. You can test for the gene from anywhere in the world...even in the south. :0) They can fill your doctor in on the meds.
CommentThanks Erin, that does clear it up for me and explain to me what's going on in my body! It all makes sense. What kind of medication should I go on to bring up my estrogen level? I will keep you updated on my progress.
CommentHi, Susan. The gene theory...does this mean if we all get tested we will all probably have this gene? If so, then I really don't consider it "rare" since so many women have this problem. Also, what is the medication you were given that cured you? I can't see where it would hurt for you to tell us that since if it was by prescription only we couldn;t run out and start taking it without a drs prescription. I'm not trying to be difficult, I just don't know why you cannot give the name of the medication...that we need to see this specific dr who will test us and then treat us. I'm not running off to any dr until I know the name of the meds he prescribes for this so I can do research on it. Going to him completely unawares of his treatment does not sound like something I would want to set out to do. To not want to mention his meds and to say we need to go see him to find out sounds a bit questionable to me. If I had been cured by some meds a dr had given me I would race to this website and spell out the named of themeds in capital letters for all of these women so they could go to a dr in their own town and mention this type of medication.
CommentHi, Susan. The gene theory...does this mean if we all get tested we will all probably have this gene? If so, then I really don't consider it "rare" since so many women have this problem. Also, what is the medication you were given that cured you? I can't see where it would hurt for you to tell us that since if it was by prescription only we couldn;t run out and start taking it without a drs prescription. I'm not trying to be difficult, I just don't know why you cannot give the name of the medication...that we need to see this specific dr who will test us and then treat us. I'm not running off to any dr until I know the name of the meds he prescribes for this so I can do research on it. Going to him completely unawares of his treatment does not sound like something I would want to set out to do. To not want to mention his meds and to say we need to go see him to find out sounds a bit questionable to me. If I had been cured by some meds a dr had given me I would race to this website and spell out the name of the meds in capital letters for all of these women to see so they could go to a dr in their own town and mention this type of medication.
CommentI believe in one of Susan's earlier posts she mentioned the herb SUMA as the medication that cured her. It is a type of Ginseng.Susan also stated it only worked for those who had the rare gene. Which means that if less than half of us have this gene, then what has cause this dibilatating condtion in the rest of us? Also, after Susan's first posting about the rare gene thing, I tried to do a search on Dr ledge and Witkin to find out more about the rare gene and treatments but all I could really find these drs did was to perform vulvectomies on women suffering from vulvodyna and vesitbulitis. . Please check out website www.nycornell.org/news/press/1997/ledger.html Just wanted to let you be aware of this before you get your hopes up as I know what it is like to go to yet another dr hoping for that miracle cure only to be let down. I am not being disrespectful toward Susan's drs here but please read this website I gave as it really does state that the most effective treatment for this is surgery. I don't want to be mutilated unless I have cancer and it is to save my life.
CommentTo anyone that this may help: I had a Vulvectomy done back in 1996, and the vulva area does not look any different than it did before the surgery, meaning it does not look mutilated or freakish. I wasn't sure if some of you thought that it would look disfigured or repulsive, it doesn't. Hope this helps!
CommentKathy, I wasn't thinking of how the vulvectomy would look, I was thinking of how it cannot possibly feel right. Removing all of that area sounds as though it would be more uncomfortable sitting than the burning is as more of you "down there" would be exposed.
CommentTo Susan: Please let us know what the medication is. And how do we tell our gyn's to test us? What does the test involve? Does it hurt? I have been taking the SUMA twice daily. Not 100% regularly but I'm trying. I still haven't noticed a change. That's in combination with homeopathic meds to try and get rid of the candida in my body. Of course, since I haven't found the way to give up chocolate, I'll probably never be rid of the candida. But since I can' t enjoy sex, I see no reason to not enjoy chocolate. Sometimes I lose hope and just cry because I feel so defective. Other times I just hope that one of the methods I'm trying will miraculously work. The website helps me realize I definitely am not alone. I really hope Susan can give us more information.
CommentDr. Ledger never once mentioned surgery to me, besides telling me that it wasn't a good option when I brought it up. Maybe they performed the surgery years ago, I don't know... But they certainly have not been doing it over the past 3-4 years. Dr. Ledger was the only doctor to help me -- period. I am also aware of 4 other ladies who now feel completely normal after not being able to have sex for YEARS. And those are just gals I met in the waiting room. I am not being difficult by not posting the medication, it's just that it will not help you if you don't have the gene, so it makes sense to get tested for it first. It's a simple blood test, that is all. Any lab can do it. Just show the article I posted to your doc for his/her interpretation and see what he/she thinks. You don't have to see Dr. Ledger if your doctor can read. Your doc knows how to contact other doctors who have been published. That's my advice.................you can take it or ignore it. I just don't comprehend the resistance to getting tested. It seems everyone is willing to try all sorts of evasive medications, yet no one wants blood drawn? I am 100% against blindly self medicated oneself. I think it does more harm than good.
CommentWell Susan you are one of the lucky ones who can afford to go to Dr. Glazer. Most doctors don't really know much about vulvodynia I feel that most of us know more than our Doctors. I know that the six doctors that I went to are not going to give Dr. Galzer a ring to see what they can do for me. LIke I said - you are fortunate that you were able to go to good doctors.We educate ourselves so much in this area by looking on the internet everyday. Most Doctors don't think that it is genetic and won't test most of us. All that we are asking for is just some insight on what kind of medications you used. I am sure that we are not going to run to our doctors tonight and ask to have a prescription for what you have used. Most of us are scared to even wash the area or try any drug. We are just wondering what helped you . Nothing makes us happier then hearing that someone is pain free from this. It just lets us know that there is hope.
CommentI disagree with your reasons for not sharing the name of the medication that helped you. We are not going to self-medicate; we are not "afraid of blood tests", etc. Please tell us what it is!
CommentSamantha: I'm sorry if you didn't read my post in its entirety or somehow confused me for someone else, but I've never been to Dr. Glazer (although I respect him for having this wonderful site and for giving a damn about a small percentage of the overall population). Were you speaking to me when you said I could afford him? Please re-read. I think I gave very valid reasons for not wanting people to self medicate. Please just print out the article, hand it to your docs and ask for the test. If you have the gene, there is help available. I know because *I* have been helped. If you don't have the gene, I personally don't have any answers. Just don't give up hope -- there has to be an answer for everyone. I went through more than a dozen doctors before I found mine. Good luck to each and every one of you. I will NEVER forget that pain as long as I live, and that's why I come back here every few months....to post my article in case it helps someone else.
CommentThat medicine she is referring to is probably the same one being used for fibromyalgia it is found in some over the counter expectorants it is pronounced Gwyfenasin. Am I right?
CommentEveryone, please, scroll up a bit to two of Susan's postings. One on 7/26 and the other on 7/28. She gives the name of the medication. It is a herb called SUMA, a type of ginseng. Something does not seem right here, though. In her most recent post she claims she was cured. Yet in her other two posts I have mentioned, she claims to have "flare-ups" and takes the SUMA again which seems to help "a bit". I guess I am confused by her miraculous revelation. Was she cured or not? Cured, to me, is never having this burning/pain ever gain. Cured is not having relapses or flare-ups. She is angry that we do not rush right over to our drs and demand this rare gene test. Trust me, Susan, it is not because we are afraid of "a little blood work." We are talking here about many many MANY of our drs who have, nor had, no idea what vulvodynia and vestivulitis even was or is! Some of us have STILL, TO THIS DAY, never been "officially" diagnosed! So, honestly now, let us speak real world here. If these many drs had no idea what Vulvodynia and Vestibulitis was and would not believe in it even when shown articles after article about it, do you , in your heart, honestly believe they will fall for the rare gene theory even if we took article after article to them regarding this? Even if we asked them to get in touch with your drs? We are not being stubborn by ignoring the gene theory. We are being realistic. We have lived through humiliation from drs. Most think we aren't carrying a full set of marbles, if you get my drift. I don't know about anyone else, but if this gene is so rare that only a small percentage of us will have it, what then? One step forward two steps back? And do not get down on those of us who have been left with no alternative but to "self-medicate" ourselves. When you run into brick walls you turn to alternative methods. You will try just about any non-conventional method to try and alleviate this burning pain. Most of already know that prescription meds have done us more harm than good. Some have caused the burning to escalate instead of ease off. We are working here with a bunch of drs who , really, have no clue what has caused this nor how to treat it. When that happens we become guinea pigs being given one prescription med after another and even resorting to horrible invasive procedures only to find out it did not help the burning. As I said, something does not ring true to me with Susan's postings. Were you cured or not? And since you already posted the herb SUMA that "cured" you why the big secrecy now? I said it before and meant it. If I were given something that completely cured me I would run to this website and post the named of the mediation in HUGE LETTERS so these women could maybe have a chance to start living normal lives again. Postings such as yours ,Susan , make me sit here and wonder what is really going on? Did you really have vulvodynia and/or vestibulitis or are you getting a commision for every woman whose dr contacts the dr you mentioned? My mother always told me to go with your gut feeling. And I swear, whenever I read a post of yours my gut feeling tells me that something is amiss here. For those of you who do not know of what I speak, go back, like I said, and read her posts. PLEASE! and a word of caution here: Suma, which is a type of Ginseng elevates estrogen levels. Therefore it is highly advised in all herbal books that women who have or have had breast cancer or are in a high risk group for getting breast cancer should not take Ginseng. Also women already taking some form of estrogen should not take this herb .
CommentI especially agree with "since you already posted the herb SUMA that "cured" you why the big secrecy now?".
CommentTo Ruby: Thanks for sharing your story and information. Could you please tell me Dr Reid's full name and his contact details? I actually live in the NT so as you can imagine they are not exactly up to date with the latest technology up here. I am glad to hear that you have had some relief from surgery and biofeedback. Surgery sounds very scary and radical. What exactly did your surgery involve? Also what does biofeedback involve and is that done through Dr Reid too or a different doctor? Hope things are continuing to improve for you.
CommentTo Ruby: Thanks for sharing your story and information. Could you please tell me Dr Reid's full name and his contact details? I actually live in the NT so as you can imagine they are not exactly up to date with the latest technology up here. I am glad to hear that you have had some relief from surgery and biofeedback. Surgery sounds very scary and radical. What exactly did your surgery involve? Also what does biofeedback involve and is that done through Dr Reid too or a different doctor? Hope things are continuing to improve for you.
CommentTo Ruby in Australia: Thank you for sharing your story with me. Could you please tell me Dr Reid's contact details and full name? Also what did your surgery involve and what does the biofeedback you are doing involve? I hope things are continuing to improve for you. It's good to hear some positive outcomes.
CommentRE: Estrogen. Symptons of low estrogen are thinning of the tissue, dryness, and many more - Stephanie, I am taking VagiFem, but advise you to see a doctor to take care of this and get tested for any infections as well.
CommentI contacted Susan after those posts back in July (or whenever it was). She was indeed treated with SUMA which is sold at the GNC chain and other natural food stores. Suma is actually a root called Brazilian Ginsing, which is not a true Ginsing. You can find interesting information about Suma and it's anti-inflamatory properties in the internet. I also cannot afford another blood test so I just purchased the Suma and took 500mgs. 3x a day - which is what Susan said she took. It didn't do a darn thing for me, but it's cheap, and harmless, so it's worth trying. But to Susan - shame on you for trying to withhold that from other women who are suffering! Who are you to try to make decisions for us about how we should go about things??
CommentDoes anyone have a sensation on their skin like they have a "sunburn" for lack of a better term. I have vulvodynia both at the opening of the vagina and in the anal area (burning stinging pain). And recently, I've noticed intermittent burning (sun-burn like feelings) on my shoulders, under my butt, and on my face. It seems to come and go and I guess I could call this allodynia... but this is weird. And it scares me b/c I wonder if this vulvodynia is spreading to other parts of my body. Does anyone ever experience this? Thanks!
CommentHi BK - except for the other areas that you commented on the vulvar anal "sunburn" is exactly what I have - Isn't that what most of us have??
CommentTo B.K.: I, too, have the "sunburn" feeling. Mine is on my arms, and I also get the burning on my lower buttucks and down the back of my upper legs. This started before the vulva burning. Also, for as far back as I can remember the palms of my hands and the soles of my feet burn occassionally. When this happens they look very red. But the burning on my arms, upper back legs and lower buttocks do not look red. Does yours?
CommentAnyone with half a noodle can figure out that no medication in the world is going to take a polymorphism of a gene and make it normal again. Maybe gene replacement could, but the medical world is not at that stage yet. So, on the rare occasions that I still have flare-ups I take the medication and the medication makes it stop. And no, it's not "shame on me," it's shame on the people here who recommend that other women run and and try all sorts of stuff that didn't work for whoever is recommending it! The anonymous poster who doesn't "get" why medication cannot fully cure a defective gene also said that the SUMA I spoke of months ago (and luckily they are researching and introducing other medications all of the time) said it herself that some women can't take it. So why wonder how come I wouldn't want to mention it again? Because there are many women here who would run out and try it WITHOUT GETTING TESTED and WITHOUT KNOWING WHETHER IT IS GOOD FOR THEM. Look at the number of people on these 19 pages of guest books who will try ANYTHING without knowing whether or not it's safe for them. One woman sat in a tub of bleach! Some people can't stomach certain meds, that's why they should always seek the advice of a doctor before self medicating. They may have a pre-existing condition that will not react well to it. Unless you're a pharmacist, you should seek medical help. I have said time and time again that you don't have to see Dr. Ledger or Dr. Witkin (read my recent post for crying out loud), but that you should present their study to your own doctors, so accusing me of being their pitch person is arrogant and stupid. Oh well, that's what I get for trying to help just 1 person...I get attacked by a bunch of women screaming because they think I am being devious. Good luck to all of you. I'll take my advice elsewhere where it is wanted.
CommentWe don't need your negativity here. Good riddance!
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CommentI need help. I don't know if I have vulvodynia, so please tell me if my symptoms sound like it. The pain is in the mucous membrane between the clitoris and opening of the urethra. Even when gently touched with a q-tip it hurts so bad it makes me scream! The area has some red blotchy spots, but no cuts, blisters, ulcers, etc. My dr. also said there is are white spots that are abnormal. I have looked and I can't see anything but redness. The area only hurts during intercourse and immediately after and while urinating. I have also been reading about this condition extending to the anus or perinium. I have a lot of pain at the opening of the anus. There is even some bleeding. The dr. said I have anal fissures. Is this caused by vulvodynia? My dr. has prescribed a cortosteroid cream and I apply it to the vulvar area. It does not seem to help. How long should I continue using this cream?
CommentWhat in the heck is going on here? I feel like I'm in alloy.com, some teeny bopper site I visited when I was 15. Enough already. Instead of the pointless back and forth, if you think that someone is a suspicious flake then just don't respond! New topic: Has anyone who experienced an increase in pain from taking depo-provera or low-estrogen birth contol pills found that their symptoms improved (or at least remained steady) with taking birth control pills with medium to high doses of estrogen? I don't think I can stomach it but I can work through the nausea if it means that I won't have to get sterilized.
CommentSUSAN - and anyone else here who offers hope without COMPLETE information: Just for the record I did already check this study out with my doc. The study itself mentions no treatment. I can be checked for the gene - but even if I do have the gene - my doc had never heard of SUMA! So it is true that anyone can be checked for the gene - but it doesn't mean that their doctor will have a clue what to do if it comes back positive - and we can't all afford to go to New York! It would be more helpful if I could have also told her what the treatment being used was! We all need to share thorough information about our treatments - what is helping and what is not. If someone here was actually dumb enough to sit in bleach - that's their own problem! You can't stop stupid people from doing stupid things. Don't deprive the rest of us who already have a clue - and I think lots of women here do - from information that may help us. Gee Susan - maybe if the woman who sat in bleach had known about SUMA - she would have tried that instead!
CommentPshew! Hi Everybody, So I got all bent on my zoster virus thing, because when I read about the the 'leaky gut', that seemed to meet all the same criteria (for me anyway) When I first got this, and they looked at a slide sample of me, they only noticed white cells, which I guess indicated a battle of some kind. All tests clear. I probably took ten more courses of various antibiotic. So for now I'm going off on the auto-immune approach. I know there are practictioners that treat with various anti-histamines. Has anyone tried any of the natural 'histamine regulators'? Some of them are tumeric, nettles, devil's claw and quercitin? I'm going to study on this for awhile. I also wrote Dr. Weil. You can be sure I'll tell. Gee Susan,since I'm in the 15 year plus club, I proceed from the belief that I am being responsible, no more going to the doctor without a specific documented approach and full knowledge of the medication involved and it's effects. Hang in there everyone. I usually don't write here, and mostly just try and accept this condition as best I can, but every now and then I go on a 'binge'. I'm on one now.
CommentYour pain in the mucous membrane between the clitoris and opening of the urethra is where I used to have my worst pain too. I remember the qtip test, and it hurt so bad! I hope that you can get some relief. What finally worked for me was using topical estrogen (Estrace) cream in that area. Please talk to your gyn about this med, and hopefully it'll work for you too! Good luck!
CommentTo Emily: My wife took Ovcon 35 for seventeen years, within one year of stopping she started to tear. She did have recurrent yeast and bladder infections since the beginning of our relationship. I think there is some relationship between stopping the Pill and the onset of the tearing. Yet many women believe their symptoms began with birth control. The endocrinologist she saw said her estrogen was normal. Something caused this? I had a vasectomy so she could get off the pill and avoid any negative effects. Of course I also did not want her to have surgery . Sure would be nice to find an answer someday. Good luck.
CommentTo Hannah I used to see Dr Reid when he was in the US in Michigan. He is a very caring doctor. He is in Australia now and I have a website that he is part of: http://www.vulvarpain.net/ To all: Now I have a comment about the 'susan' report. My insurance is an HMO and I cannot just go to the doctor and ask for a blood test especially a gene test (I bet that is expensive). I recently asked to have an x-ray taken of my tailbone, because I thought an old injury might be adding to the vulvodynia symptoms and the doctor wouldn't do one. He said 'everyone' has trouble with their tailbones. I am in the process of trying to find a new doctor, but that doesn't mean that another doctor won't say the same thing. I agree with most of you when you say that if you don't want to share the information about what is helping you, then don't mention it at all.
CommentEmily: Re-BC Pills. I have not yet tried a medium-higher estrogen BC pill as I am still trying to get everything stabilized down there, but I have spoken to my doctor regarding this and she said that eventually we will need to find the right pill for me, so there is hope. It is very important if you think that the pill has been causing your problems, that you see a doctor and get tested for infections bc until they are cleared up as well, you will still be uncomfortable. I was on OrthoTriCyclen for a little while a few years ago and that seemed to keep me in better shape down there. Best of luck and don't give up - you will work this out!!
CommentI have been diagnosed with vulvodynia. My gynecologist (a specialist in vulvo vaginal) disordered believes my pain is due to nerve damage. He believes that years of horse back riding has caused nerve damage and is causing the extreme pain I feel in my bladder, urethra and vaginal area. I have read on the National Vulvodynia website that some people with this disorder have responded well to active release therapy. This goes on the theory that scar tissue has formed around the nerve and is entrapping the nerve and causing constant referred pain. I have tried unsuccessfully to locate a chiropractor or physical therapist in Jacksonville, FL that is familiar with active release therapy. I tried the activereleasetheray.com website to try to locate a provider in Jacksonville but wasn?t successful. Would you be able to assist me in finding a provider in my area? Thank you so much for you time, Jennifer Teagarden
CommentWith all this talk about leaky gut, yeast, candida, and yeast growth promoted by the use of birth control pills, getting a copy of the Yeast Connection and the Woman by William Crook is really informative. I hate to beat a dead horse here, but I cant stress it enough. But I also wanted to let readers know that Crook has a website also that's fabulous with lots of links, but his Q & A page may urge readers to look into yeast as a possible trigger of vulvar disease. Take your time reading through his site, I hope this info helps you. The address is www.candida-yeast.com. Smart man! Bless all, laurel
CommentI was just wondering if anyone has tried prednisone or any other type of oral steroid. I know that some have said that the topical steroid burned or didn't work. I think there may be other ingredients in the topical cream that may be irritating. I am going to the doctor next week and will ask for an oral steroid. Has anyone tried it? Thanks.
CommentIf you are sensitive to yeast infections, be careful with oral steroids, they can make it worse.
CommentDoes anyone here get flu shots? I have a friend who insists I am having this problem because I have taken had a flu shot for the past 4 years. She even printed off material from websites for me that lists some of the toxic chemicals listed as ingredients in the flu vaccines. Such as: Ethylene glycol (antifreeze), Phenol, also know as carbolic acid (this is used as a disinfectant, dye), Formaldehyde, a known cancer causing-agent, aluminum, which is associated with Alzheimer's disease and seizures and also cancer producing in laboratory mice (if used as an additive to promote antibody response), Thimerosal (a mercury disinfectant/perservative) can result in brain injury and autoimmune disease, Neomyicn and Streptomycin (used as antibiotics) have caused allergic reaction in some people. More is said concerning this at www.mercola.com/2000/nov/26/flu_shots.html. Any takes on this theory?
CommentOn that website address I gave for flu shot info, leave the "L" off of HTML, otherwise it will say PAGE NOT FOUND. www.mercola.com/2000/nov/26/flu_shots.htm
CommentTo Bennell: You would probably need to take several shots a day for years to have a negative effect from those toxins. We are exposed to several hundred toxins everyday. There are cleansing regimins if you think it is a concern.
CommentHi M1 and Bennell, I guess we all have that "sunburn" feeling in the vulvar and anal areas (as well as in the pubic hair area). But I was referring to this intermittent feeling that I get on my arms, shoulders and under the buttocks that I get that feels similar to the vulvar feeling. To answer your question Bennell, no there' s no redness... like my vulvodynia, nobody can see ANYTHING... which drives me nuts. I just saw my doctor and asked about this feeling that I also get (again intermittently) on the arms, shoulders etc. and she suggested I get an MRI of the brain to check out my nerves. I know, it's a long shot... but the point that I'm trying to highlight here is that I'm afraid that this damn problem is speading to the rest of my body... could that be? One more thing-- I unfortunately recently had a miscarriage. But while I was pregnant, the pain went away totally (in the vulvar, anal, arm, shoulder etc.) areas. Granted, it was only for 6 weeks, but it totally went away. Have any of you had this experience? I wonder if pregnancy helps it; is this a hormonal issue? There are too many questions and no one knows the answers... Thanks for listening! BK
CommentTo the person who posted about cleansing regimens regarding flu shots...what are the cleanising regimens? Thanks! Myself, I had not even considered the flu shot causing all of my burning problems. But I only recently told this friend about my problems and she immediately jumped all over me about the flu vaccines. She said she told me if I kept getting them they would eventually cause me health problems. It *has* now made me wonder because it was in Oct '98 that I got my first flu shot and it was April of '99 that my burning problems began.
CommentTo Bennell: I didn't post my name because some ladies here don't appreciate a guy reading or responding to this very personall subject. A couple of weeks ago I saw a T.V. program that dealt with toxins in our environment, they were pushing a book by L. Ron Hubbard called Clear Body, Clear Mind. Check out similar books or sites on the internet. There are diets and supplements that are used to accomplish this, I'm not going to play expert here I just wanted to point you in a direction that would answer your question. My wife never took the flu shot and I'm sure many of the ladies here didn't either but who knows, maybe you are onto something. Best of luck and I hope you were not offened that I gave my thoughts.
CommentTo Amy: I have had anal fissures before and they are not fun. I don't know if they're related to the vulvodynia b/c I got them 2 years ago and I've had vulvodynia for about 8 years. Keep using the cream, it really helps.I also used Anusol (which I think is the type of cream that your Dr gave you) and it was very helpful. Also, use hemorrhoidal pads (like Tucks) to cleanse that area anytime you, you know, use that body part to go to the bathroom. I actually bought T.N. Dickinson's Witch Hazel pads, they were actually cheaper and the ingredients were more natural. Hope this helps. Everybody else, the whole Susan thing was weird. So it was SUMA she was talking about? I've been taking it for a few months and have seen no results. The clenching thing that people referred to is totally true. I've been trying to use the vaginal dilators (remember the woman from Australia who swore by them?) Let me tell you, some nights it hurts and other nights it just glides in. I really think that area is so traumatized that it clenches just at the idea of something going in there. The nights that it's easy, it still burns a little. So if it hurts with a small plastic thing, I sure as hell don't want to try having sex. I'll let you know if I improve by the end of the month when I see my gyn again. I'm practicing 3-4 times per week. I wish it were every day but some days I just can't face doing it. Keep sharing, please, it really helps, even if it's just to give us some hope.
CommentTO MARISA: I AM ALSO USING THE DILATORS. MINE CAME IN 4 DIFF SIZES AND I HAVE WORKED UP TO THE SECOND SIZE. I AM WITH YOU, SOME NIGHTS I JUST CAN'T DO IT. I AM SORE FROM THE NIGHT BEFORE OR MENTALLY I DON'T WANT TO DEAL WITH IT. I REALLY NEED TO GO TO A LARGER SIZE (SO I KNOW IT IS WORKING AND STRETCHING THE SKIN THERE). I THOUGHT I WAS READY FOR SEX AND TRIED IT AND CRIED FOR HOURS. IT HURT SO BAD AND RIPED A TEAR 1/2 IN ONE PLACE AN BLEED FOR DAYS!!!!!!! I HAVE TRIED TO USE THE THIRD SIZE DILATOR BUT IT IS TOO LARGE AND HURTS TOO MUCH. I NEED SOMETHING IN BETWEEN. MY DR SAID THIS COULD TAKE UP TO A YEAR AND I HAVE ONLY BEEN DOING THIS SINCE JULY. I GO TO DR. NEXT WEEK AND WILL REPORT BACK. THIS IS THE MOST FRUSTRATING CONDITION. I HAVE HAD IT SINCE 1986. WITH EVERYTHING ELSE IN DAILY LIFE AND IN THE WORLD TO DEAL WITH IT WOULD BE NICE NOT TO HAVE THIS AND BE ABLE TO HAVE A SEX LIFE AND FEEL NORMAL. GOOD LUCK AND KEEP POSTING ON YOUR DILATOR PROGRESS.
CommentThis is my first time visiting this site. I am 37 years old and have been married for 17 years, and I've been suffering with recurrent vulvar pain for 17 years. In May of this year, my doctor finally diagnosed me with vulvodynia. I have seen at least 5 other doctors. I've had several biopsies with no diagnosis. My doctor has suggested that I check out this website, and I'm so glad I did. I'm grateful that there are other voices out there experiencing the same thing. Maybe together we can figure this out. My doctor started to treat me with Elavil, but it knocked me out so badly that I can't take it and still function in my daily activities. I had a hysterectomy a year ago, and my symptoms aren't as severe now. Now I mostly only have pain with intercourse. When I am experiencing symptoms, I have tried Preparation H gel. It gives quick and cooling relief. Makes it easier to tolerate. It seems to reduce swelling and relieve any itching and burning. My doctor has me using Estrace cream at night and taking Cal. Citrate 4 times a day. Now I only have pain with intercourse. But at least the flare-ups have reduced considerably. Has anyone found anything that helps you to be able to tolerate intercourse?
CommentHello All, I read this site almost everyday and usually find some new point of view on our plight. I have also found some good suggestions. I believe I have one for those suffering with the burning, stinging, pulling feelings on the non-mucous membrane areas (i.e. large labia and pubic hair areas) I have mentioned it on this site before. It is a numbing cream called EMLA. It is a perscription ointment used for numbing skin prior to medical procedures such as needle insertion, (especially for children) numbing for a babies circumcision and so on. It numbs for a long time when I use a small amount. I have used it for 2 years with no bad side effects. I have also found I can order it directly from Canada at a cheaper price directly off the internet with no perscription. They sell it as an over the counter medicine in Canada. I order from Global Drugs.com and receive it in about 6 days. This may not be for everyone but it has saved my sanity many times. If you decide to try it and it works please comment on this site and let everyone hear another opinion. My gyno, urologist and neurologist are aware that I use it and have no objections. I hope it helps someone else like it has helped me. Good Luck, Jean
CommentVery informative article for people with fibromyalgia, thyroid, yeast infections, food allergies, and chronic fatigue. Go to thyroid.about.com Where it asks for search, type in candida and thyroid (you dont have to have a thyroid at all to benefit from it). Click on the first article Candida (Yeast) and Thyroid, then read the interview with Dr Michael Mc Nett. At the bottom of the article, click on the his link, and it gives a great Q & A. Hope this opens up a new line of thinking for you!
CommentI met with a new gynocologist today. She says don't go above 150mg of elavil (what I am currently on.) Told me to use estrace and get back to her in a month. Said we would try neurontin if it didn't work. Is this an appropriate route to take? I thought neurontin was a substitution for elavil, not something that could be used in combination with. If that doesn't work she wants to send me to a specialist. I can tell she doesn't know what she is doing, but at least she doesn't claim to know and she is taking the approach of learning while treating.
CommentTo Frank: Thanks for the info. I'll check out the book you mentioned and also search the internet. To Jean: Can the EMLA be used on the mucus mebranes as well?
CommentTo Linda: I also use estrace cream at night. This has helped me have pain-free intercourse. It may take a while (weeks, months) for Estrace to start helping, so don't give up yet. To Benell: Last year my gyn prescribed EMLA for me to numb before intercourse, and she said it was fine for use on the mucous membranes. I guess it can sting a little at first, but after it goes numb, it's fine. I don't know since I never got up the nerve to use it. Estrace has helped me so that I don't need numbing anymore. Good luck to both of you!
CommentHi! I was told by a well known urologist in NYC (Moldwin) to go on Neurontin for the vulvar pain. It is completely different from Elavil -- it is some type of anti-convulsant where Elavil is an anti-depressant. I am not sure how it works and I am not sure that the doctors know either. An article at this website talks about it: http://www.medicinehouse.com/guidepages/PRvulvodynia.html You can also just type Neurontin and Vulvodynia into your web browser and several articles will come up as well. I stopped using it for other reasons before seeing any relief but will be trying it again if my current treatments do not work. Good luck!
CommentI have taken very high doses of Prednisone (oral steroids) and via IV (intraveneous) for my ulcerative colitis. It has never improved my vulvodynia. Just figured I would let you know my experience. Oral steriods, by the way have major side effects, such as bone loss, glaucoma, increased weight, water retention, and other complications.
CommentI felt "knocked out" too when I started Elavil, but after about a week, I was fine. Your body should adjust to the medicine after those first few groggy days. How long did you take it for?
CommentI have had vulvodynia for the past 8 years. Anywhere from 2 to 5 times a year I will have intense burning with extremely red and inflamed vulvar tissue. A wet mount under the microscope brings a diagnosis of BV. However, I have no discharge, no fishy odor, no itching. I take a 5 day course of metronidazole and it will gradually subside over the course of 2 to 3 weeks. I am concerned that the repeated antibiotic use may develope into a yeast problem. I also don't know why I continue to get the BV. Can anyone shed any light on this matter? And does anyone know how to help prevent BV? All I have found is the same treatment info. Anything would be appreciated, I am growing weary of this circle of symptoms. Thank you.
CommentI got worse (my vulvar pain) after treatment for my BV, and I am sure it was the antibiotics! Its so simple to avoid if you demand an antifungal like diflucan while on treatment. You will save yourself A LOT of grief. let the doc know you are yeast prone.
CommentTo Benell, if I remember correctly EMLA says on the insert to avoid mucous membranes, but people do put it there. I put it there when I had a biopsy, the doctor didn't want me to feel the shot for the biopsy (EMLA is usually prescribed for needles). Anyway it did take away all feeling there, but it stung a little at first and then my vulva got so swollen and beefy, who knows what that is doing. I'm not trying to scare you. Just because the insert says it is not approved for that use, does not mean it is not o.k. I always say read the insert. Update on me...If you remember I was having green discharge that was also crusting up on my hairs (gross, right?) after I went through the IVF. Well, I went back to Toth a while ago and he said I have a ton of some bacteria that is usually harmless and said I can try Zithromax. I avoided doing anything, because of fear, I hate the idea of taking another antibiotic, I hate that I might take it and nothing will happen, I had tried flagyl (recommended by a different doc) and that did nothing, I always have the fear that I might take an antibiotic and get the vulvodynia back, even though I basically do not believe that antibiotics cause vulvodynia (I also know I can be wrong). Well, I went back to Toth again a few weeks ago, because I finally mustered up the courage to try something. It was an interesting visit. He told me that he had one other patient that was in pre-term labor that showed basically the same results on culture as me. He read her a passage from a text, which he read to me, saying that the belief by this author was that typically when this bacteria is present in large numbers it can be covering up underlying "bad" bacteria and he said he put her on zithromax and the pregnancy continued just fine. He admitted that he doesn't know for sure if it was his meds or not. He said that it seemed impossible to him that my culture went from so many bacterias to just this one. I asked if he wanted to do another culture, and he said that it would probably not affect how he would treat me, and decided against reculture. Well, I finished taking the zithromax one week ago, and the green discharge is gone (I had it for over a year). I still am getting a little sticky by late afternoon, so maybe there is one more step for me. I continue to be very happy with the care Toth has given me. I know he does not have all of the answers, and I do not expect him to, but I like that he is a partner in my health care, rather than a condescending doctor.
CommentQuick question: It is highly recommended that we don't wear underwear, but before I found out that what I had was vulvodynia I could never have imagined doing this and didn't understand those who did. The relief I get from it is significant but women wear underwear for a reason....and I can't be cleaning my pants as much as is necessary when using this method. What do you all do? Could I use a pantyliner without panties? But that would just create another irritant....hmmm sometimes it's alright but when it's not I'm usually not in a situation to do anything about it.
CommentYou could buy some men's white boxer shorts and wear them under long skirts.
Comment...not sure what happened but my posting was posted before I finished...I still have some slight burning with urination and intercourse is NOT pain free but I am definitely better. Just wanted to pass this along and will post more as time goes on. Thanks and good luck to all of us. (PS I ahve had vulvar pain for 10 yrs with 1 yr of severe spontaneous burning with out provocation). LE
Commenttook survey......quite awhile celebet....hard to remember LOL
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