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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. |
