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CommentWelcome to the Ninth edition of the vulvodynia.com guestbook.
CommentHello, it has been awhile since I posted. I wish I had some good news to report but I still feel like I'm going around in circles trying to figure this all out. I have yet another app. with my gyn. in a few weeks but it almost seems pointless to go but I have nowhere else to turn. I am so frustrated, angry, confused, you name it and I feel it about what my body is putting me through. Does anyone else experience an increase in burning if they sit for a long time? My husband was going to Saint John this past weekend to run a marathone and he really wanted us all to go so I was feeling so guilty about never wanting to do much that I said I would go. It is only a 4 hour drive from home but by the time we got there I was so sore and the redness and burning increased even though I tried to sit on a cushion and not put direct pressure on the vulvar area. The next day we drove home and I was in even worse shape. I had about 4 cracks in the creases of the skin. They sting and hurt so bad. I can't even sit at the kitchen table for too long without having the redness and burning increase. Intercourse does the same thing to the skin and I've noticed more burning the week before my period. I cannot live a normal life like this, I'm at my wits end. I know I cannot go no like this for much longer. I feel so much guilt because I can't be the kind of wife and mother I want to be. This has seeped into every inch of my life and it is taking over. I have been dealing with this for just over 6 years and I have tried to fight the good fight but I'm growing very weary. I am totally worn out by all this. This just isn't fair - I'm not a bad person, I'd like to know what I did to deserve this. I would give anything in the world to have my old life back before this all started. I am so tired of applying various creams and taking baths that only offer temorary relief. My bathroom is beginning to look like a pharmacy. If anyone else is trying to deal with burnig, red cracking skin I would love to hear from you with any sugestions for relief. I have had three biopsies which showed a thickening of the skin and a minimal viral infection but I feel like there is something there that the doctors just aren't finding. A person should be able to sit and not turn blood red and burn and have the skin crack. So I would love to hear from some of you if for nothing more than some moral support because as I said I've taken just about all I can. ~Terry
CommentVulvodynia has helped to ruin my marriage. Being diagnosed with HPV finished it off. I despise these diseases and wish with all my heart that they could be cured. I am very sorry for all of the pain my fellow sufferers have gone through. Best of luck to all of you.
CommentHello--I recently posted a long message explaining my experience with vv. It was at the end of the previous guestbook and I thought it might be worthwhile to post another message (in case no one gets to the other one). I have been suffering for over 3 years and seen many doctors. I had finally found one that was treating me with amitriptylene and diflucan...only to find out he retired and did not inform his patients. The medications (especially amitriptylene) need to be maintained. I would greatly appreciate any information on doctors in the new york city area. I too am at my wits end and would love to hear from anyone for support. Take care and thank you...
CommentHi! I would like to receive emails from other women with vulvodynia. I am feeling very depressed and could use some support from someone who understands. Thank you.
CommentThis is going to be a long one. Sometimes I really need to talk to someone but I really don't have anyone who understands, so I write everything down in my journal, and I cry a lot, and I fantacize alot, for its my only escape. I've had this VV for just about 8 years now. Started after taking long-term antibiotics and developing a yeast infection. In the beginning the creams worked, yet the burning kept coming back. After a few tries the burning was back to stay and no cream gave me any relief. So I've been to Dr. after Dr. I keep feeling like I had an infection. After the first year, I gave up on the Medical Dr.'s and sought alternative therapies, and that was the first time something I took made any difference in the constant burning. But it wasn't the answer I was looking for either. I'd feel a little better, than get horribly worse and on and on, all the while trying different things. All kinds of vitamins, homeopathy, herbs, creams. I got to a point where I didn't have the "burning", but I had the pain and it was worse on the left side. I don't want to bore everyone and go thru 8 years of hope and frustration and setback, but in just the past month (after doing "OK" - which means I had the soreness but no severe burning), I started burning again, like an infection. I was taking an arthritic supplement which had MSM in it. Now I don't know if that was the cause or not, I stopped taking it and went to my local Dr. You have bacteria and white blood cells, indicating infection she says. She prescribed Cleocin cream. So i'm scared to death of creams, but I'm burning and I thought, well maybe this will do the trick. The MSM product I had taken was supposed to make cells more permeable, and my crazy thought was that my cells were now releasing all the toxins causing this pain, thus creating an infection. So I started the cleocin cream last night, I'm supposed to use it twice a day, and I could swear my vulva area is more swollen, certainly not any better burning wise, and maybe burning even more. Its so hard to tell when you have this every day. I had written to 1 girl who made an entry and maybe she didn't receive my e-mail or is just not up to dealing with a stranger, but if someone wants to contact me and offer any advise, I'll sure listen. I was seeing a Dr. in NYC who feels this is allergy-related, but even avoiding all the foods and diet, etc. I didn't notice any difference, but it sure did beat feeling this bad. I don't know whether to finish the cream or not, you get to a point where your desperate and I'm at that point right now. Please help!!
CommentHello, My name is Nicole and I have been suffering from vulvodynia for about 4.5 years now. It first started out as what I thought was a bad yeast infection, I was itching and red and after intercourse a few times I would want to scream from the pain, the only relief I could get was filling a bath with cold water and squatting in it. So I let this go for a few weeks and just thought it would go away with yeast infection treatment. But when the pain continued I finally went and saw an M.D. and he messed around for a whole year before my mom told me that I needed to see a specialist. I am sorry I wasted time with that doctor, he tested me for HIV and all kinds of STD's and I still had no answers.and I should mention that prior to my initial painful vagina I had been on a medication for an infection I believi it was Flagyl, and ever since then I refuse to take antibiotics, because I believe that is part of the reason for my problem. I went and saw an OBGYN and he ran some tests on me and he took a biopsy of my labia and the best he could come up with was a diagnosis of HPV. He referred me to a specialist at UC Davis in California, and my first visit with Dr Stice at Davis he told me that the diagnosis of HPV was ridiculous, he said that most of the females he was treating had been sent to him with a DX of HPV, and in fact he said that most doctors have no clue what Vulvodynia is and so the best they can dos is diagnose with HPV. So after treating with him he prescribed me with Amitryptilene which has helped a lot, I also started seeing a Physical therapist for biofeedback which showed me that my muscles on a scale of 1-10 were a 10 which were making the entrance to my vagina tighter and made sex even more painful. So with her therapy I learned how to control my muscles and how to do ecercises that would loosen them. I also got a list of foods high in Oxalates and I did some of my own experimenting, I noticed that if I ate the foods on the list I would have bad flare ups and If I did not eat those foods, sex with my husband would be so much better. These days I have Pain and on a scale of 1-10 I range anywhere from a 2-5, before my honeymoon last year I was very strict with myself and ate none of the foods on the list and I had absolutely no pain on my honeymoon Thank God. So basically I am just taking my meds and watching what I eat. If you want to talk or anything please please please E-Mail me.I would love to hear your story and treatment plan.
CommentI wanted to share some GREAT news with everyone. I've had vv for almost six years. It started just about 1 1/2 years before I got married. It came on fairly suddenly. For about a year, no doctor knew what I had. Anyway, I've been tolerating & suffering with the pain & burning for appx 6 years. Just 2 weeks ago my husband & I got a pool put in our back yard. Ever since then, I've had almost NO PAIN!!!! It left almost as suddenly as it came. The only thing I've done different that I can think of is swim everyday! I feel 99% pain free! And it seems to be getting better. For the last 2 weeks, my husband & I have been having the honeymoon that we never had, & it doesn't hurt! I just can't believe it & my biggest fear is that it will come back. So I'm still doing all the standard stuff: A&D ointment, mycolog, no fabric softner, All Free & Clear, Dove, loose clothing, etc. There were so many times after intercourse with my husband that I just bawled out of frustration & pain. I thought it would never go away, but I think this could be it. I just keep praying that I will keep feeling good. I hope that this will give the rest of you some small bit of hope. I just wanted to share something positive. Hope you're feeling a little better soon too.
CommentI like most of you have been frustrated by the inability to find an effective treatment for the pain and burning. But I recently came across a site that talks about vulvodynia and pelvic pain from a different perspective, as part of a disorder that can cause other pelvic symptoms as well. The cases reports are quite revealing, and made me realize that there may be more to my problem than just vulvar pain. If anyone is interested in this site, go to www.ppodsyndrome.com. I hope this is of help.
CommentHi-I've contributed many many times here and read every new entry ..well I just finished reading one from a carolyn about how swimming in her pool seemed to help her.I'm glad if it does- but do not recommend everyone trying this as a means of helping. I say this because I too have a pool and have been unable to swim in it for 2 years now because it makes my burning and pain MUCH worse.I attributed this to the chemicals in the water. I've tried a few times as a test to see if it is indeed the pool water and find that it is.BUT I did also discover on days I absolutely want to get in the pool-I limit my time in the water and IMMEDIATELY take my swim suit off and shower as soon as I get out.
CommentHi-I've contributed many many times here and read every new entry ..well I just finished reading one from a carolyn about how swimming in her pool seemed to help her.I'm glad if it does- but do not recommend everyone trying this as a means of helping. I say this because I too have a pool and have been unable to swim in it for 2 years now because it makes my burning and pain MUCH worse.I attributed this to the chemicals in the water. I've tried a few times as a test to see if it is indeed the pool water and find that it is.BUT I did also discover on days I absolutely want to get in the pool-I limit my time in the water and IMMEDIATELY take my swim suit off and shower as soon as I get out.
CommentWOW!!! I just finished looking at the cases in the website Cathy had found (letter of 8/21) and I can't believe it. Some of them describe me, and what I've gone through almost to a T. I took the self assessment questionairre and scored quite high. At least I have hope that there may be another, and perhaps more effective, way to get rid of the pain. To everyone still searching, READ THE CASES AND DO THE QUESTIONNAIRE at www.ppodsyndrome.com.
CommentI'm in need of some advice if anyone knows about this. Unfortunately I possibly have a bladder infection and am having extreme pain with that. I've tried to hold off until I find out my test results which I hope will tell us something, but the pain I'm in is almost overwhelming right now so my doctor has decided to put me on Bactrim. I am one of those believers that antiobiotics have caused my vulvodynia so I am totally upset and stressed out that I have to take an antibiotic. I have a homeopathic doctor who gave me a natural protocol but I believe it will cost around $200.00 to get all the stuff he wants me to take and I really can't afford that. Has anyone had to take an antibiotic recently? How did it affect you? Does anyone have alternative suggestions?
CommentI recently found out I am pregnet.Can anyone tell me how they got through pregnacy with vulvodynia? Thanks, Jen
Commenti have just been diagnosed with vulvadynia, and my doctor has instructed that i take boric acid (as a suppository) along with a low oxalate diet. i have been finding all the info i can about this disease on the internet, and i have found only one isolated article abut boric acid. i was wondering if anyone else knew anything about it as a treatment for this disease.
CommentI have been just recently diagnosed with vulvovestibulitis. I had my second child 10 months ago. I had a difficult labor (first child was C-Section) and a 4th degree episiotomy. I waited for it to heal month after month, going to my doctor always saying that I was having pain during intercourse only. They kept telling me "give it another month". Finally, my doctor scheduled surgery for "revision of episiotomy" even though she was "baffled" and couldn't diagnose me. I went to Boston for a second opinion and was diagnosed immediately. I am scheduled for surgery in a couple of weeks. I didn't like the other alternative - the cream you apply to numb the area just prior to intercourses. I have been reading the guestbook and keep coming across "low oxalate diet" and "calcium citrate". Can someone e-mail me and explain these to me and what they do. I have searched the web site and can't find definitions of them and why they are used for possible treatment. Also, just for information, I was 100% fine until my delivery. I also started the Depo-Provera shot three months after my delivery. I have not taken any antibiotics in the past year. Also, anyone who has had the surgery and has any thoughts, please e-mail me. Thank you and I want to express my caring to you all. It is awful to feel in pain during intercourse and to avoid your partner because you know it's not enjoyable.
CommentI have tried various treatments. Some have helped and others have not done a thing. I was diagnosed as having vulvodynia about 1 year ago. There are several things that could have contributed to this problem. I was working around chemicals, metals (I am allergic to them), nitrate film. I had a car accident that injured my lower back. After the accident, I started having migraines and irritable bowel syndrome. So many things happened to me at one time. This makes it very hard to pinpoint a cause. The one thing that really sets off my pain is food. I cannot have salty or acidic foods. I am staying away from oxalates. My biggest problem is with proteins. Has anyone ever heard of such a thing? Why is food causing me so much pain? Is there anything that can be done about this?
CommentI just discovered this web site and cannot express how much your comments have helped me. If anyone knows of a good DOCTOR IN THE CHICAGOLAND area
CommentI'm back. My last comment was cut off but I was beginning to ask IF ANYONE KNOWS OF A DOCTOR IN THE CHICAGOLAND AREA FAMILIAR WITH VULVODYNIA. PLEASE PLEASE PLEASE E-MAIL ME AND LET ME KNOW!!
CommentA few months ago I posted a note regarding a new drug my gyn was putting me on, GABAPENTIN. I said I'd let you all know if it helped my vulvodynia. I am happy to report that for the first time in 3 years I can sit normally and put pressure on the vulva. I am walking normally too. I feel pretty much normal most of the time! I am on a dose of 4800 mg/day (4 capsules of 300 mg each, 4X day). My gyn has 11 other patients on this drug and they have all shown varying degrees of improvement. Some have even resumed sex. I have also had no ill side effects apart from dry eyes which I treat with artificial teardrops several times a day. Hope this information helps some of you.
CommentI was wondering if there are any doctors practicing the Glazer protocal in alberta, Canada. I have a friend who has vulvodynia and been to see many specialist, who don't seem to know much about this disease. I would be wonderful if someone could give me a name and number for her to see. She pretty much exausted all avenues so far.
CommentHi, all I had to do was read the introduction and it explained a lot of what I am going through. I am glad I found this site. Thank you.
CommentPutting a name on this condition helps a little when at first not knowing why and what the problem is. I was starting to think that my boyfriend and I were creating negative chemistry when together. I look forward to reading and learning more about this condition and natural healthy ways to combat it.
CommentHi, It's been a long time since I have posted any messages on this site. I am trying to deal with VV among other MAJOR problems in my life. I am so sad, frustrated and tired of having to deal with crap in my life. I was attempting to get pregnant and have been trying since November 1998 but to no avail. I guess the main reason why is because it is sometimes hard to have intercourse with vulvodynia (at times, impossible). I have had vulvodynia since October 1990. It is very stressful for me right now because my husband and I had to move in with my mother who has terminal cancer. I am doing the best I can to take care of her but we all know that when stress is high in our lives, the demon I call vulvodynia gets worse. I feel so cheated. I am a christian and I know that God will not give us more than we can bear but I just don't know how much more I can handle. Please pray for me ladies as I feel so weak and tired. :(
CommentI was told that herpes is the only thing that can cause small cuts or tears on the vulvar skin. Is this true? Please someone respond as I am majorly confused. Thank you.
CommentRe:Tamara-I really don't believe Herpes is the ONLY cause for vulva tears. I'm no Dr.,but my daughter has had that for several years and has never ever benn told she had that! She seems to develop a tear during her periods when she wears pads-she won't wear tampons..hope that helps ease your mind.A second Dr's opinion is needed for you I think.
CommentIf anyone is considering acupuncture to reduce the coccyx and rectal pain associated with Pudendal Neuralgia, I would suggest attempting to try the acupuncture for several sessions. Although I am in the process of trying acupuncture, it has not cured the vulvar symptoms but has to some degree reduced the coccyx and rectal pain . I will attempt 2 more sessions (that will be a total of 6) before I decide to take a new route. I understand that some women have tried acupuncture many times but the possibility of the acupuncturist not placing the needles in the right spots could be the reason that the treatment was not successful. If anyone has had success with the acupuncture or other alternative treatment(s), I would appreciate a response and suggestions or simply reply with your personal experiences related to alternative methods. I also had one chiropractic session where he did a spinal and lumbar adjustment. I have to say that I think that is when the severity of my leg tingling and numbness subsided, so there me also be some value in going the route of a chiropractor. I am hesitant however to continue with chiropractic adjustments for fear of bone, spinal or other related problems which may occur as a result of adjustments, in the future. Any comments? (no PPOD comments please). If anyone else has Pudendal Neuralgia and has not contacted me as of yet, I would like to hear from you. I actually had one day last week where I felt 50% normal for about 7 hours and it reminded me of the REAL me I've all but forgotten. Has anyone else had consecutive hours, days, weeks or months of recovery or near recovery? What do you think contributed to the recovery?
Commentif anyone has had small cuts/ abrasions that come and go in a few days can you please write in and let me know what they are like and if you know what causes them. i get little cuts one at a time in different places on my vaginal skin that last about 1 - 3 days. someone mentioned that her daughter get them when she uses pads - how long do they usually take to heal? hearing from anyone else who has gotten these cuts would really help. my doctor said they could be caused by yeast or simply my skin just splitting like dry skin on your lips splits but of course i am fearing much worse!
CommentWell, after reading through the guest book, I feel not-so-alone! I was diagnosed with vulvodynia about a week ago. I feel somewhat lucky because I have suffered for a year prior to diagnosis compared to others of you who have suffered for so long not knowing what was the matter. The most frustrating part for me is the fact that there is no explanation or cure. I am so very glad for this website where each of you share your info for treatments as well as your feelings. I have been engaged for 1.5 years. I am beginning to wonder if this won't ruin my future. My fiance', for the longest time, thought I was making this up just so that I didn't have to have sex. How frustrating! I could absolutely strangle him sometimes! If he could experience one day in my life with this pain....well, we all know what would happen then! I went to my first "therapy" session today and that is where I was informed of this site. My therapist forgot to give me the info sheet on the foods that I should steer clear of. What are we talking here? Junky foods or what? Thank you all for sharing. I must admit, after reading some of your enteries I did shed a tear or two!
CommentHi, I have been diagnosed with vulvodynia just in the past 3 months. It is reasuring to read some of your comments. I am being treated with anti-depresents and HRT. I am 50 yeaars old. Has anyone had any luck with this treatment. I haven't been able to be intimate with my husband for 8 months. I am affraid he will lose patience with me. Thank You All for this website.
CommentChristie and Tamara - those small tears and abrasions you are talking about are the very simptoms which eventually lead me to be diagnosed with vulvodynia. First my doctor thought it was yeast infections, then tested me for STDs, but eventually came to the conclusion that i had vulvodynia. I get them when i have sex and sometimes when i am on my period and wear pads. They usually heal fairly quickly - within a couple of days. hope that helps. Has no one out there heard of using boric acid to treat this disease? i guess i am the only one, and will let you all know if it works.
CommentI WAS a vulvodynia sufferer and added a letter in the past guestbook. I check in from time to time just to see how you are all going. My vulvodynia was caused by taking a tetracyline antibiotic, it lasted for 2.5 years and I have been pain free for 1.5 years. I tried everything, but nothing worked, except time. My doctor told me "it just takes time, think positive" and from my experience, if you have one good day, you WILL have more.
CommentI just wanted to thank the women who wrote to me about their pregnancies and deliveries with their VV. I fought for my right to a c-section and won!!! I feel great. I am on the birth control pill to regulate my hormones. I suspected I had a hormone problem when the whole time I was pregnant the VV went away. It seems so far that I was right I am 90% pain free. I feel like a normal woman again.Your emails of encouragement were a great comfort to me. thank you! I had a boy, Michael, on June 15 1999.
Commenthaven't posted in a while and just wanted to encourage everyone to keep up the fight. i found out a few months ago my husband cheated on me just before we got married, and when i asked if he would have if i wasn't sick, he said probably not. i wonder if anyone else has had problems like this? we are still together, and still unable to have sex. i know now he understands more what it is like for me, and doesn't put any pressure on, which is great. there is no point feeling guilty about not being able to have sex, all it does is make things worse. in general, i am feeling a lot better than i have for a while - i have been doing pelvic floor exercises with a physiotherapist, which are, i understand, the basis of dr glaser's protocol. please contact me if you are from near canberra and want a physio who can help. the pain is still here but i feel it is not so bad. i am thinking about pregnancy and know i couldn't do it in the state i am now, but am aiming to be better by next year so i can start practicing the conception! i have read today so many people feeling so helpless and hopeless. i too felt like that and i don't know what has made the difference - all i know is i feel there is a light at the end of the tunnel, and i know i can make it there. if we all support each other, we all will get there.
CommentDr. Glazer, We need another guestbook. The information provided only takes us up to 8/16/99. Please don't forget about us. Your guestbook is the only hope we have to speak to others who are suffering with the same condition.
CommentHello- I scheduled a chat but have been unable to connect and chat with anyone. Please help me with this problem. Thanks Kay
CommentI am 27 and have had vulvodynia for 10 years - yes for my whole sex life! I didn't even know what it was until just a few years ago. I was so relieved to find out it wasn't all in my head and that I wasn't the only one with this problem! I used to cry almost everytime my husband and I tried to have sex. That made him feel awful and me too. After several doctors, when I found out what the problem was, I was urged to have a vulvectomy. I was willing to try anything. I'm not sure that was a good idea and don't think it did any good. The recovery was horrible and I had to go on disability from my job for a few weeks. Then I was put on Elavil. It seemed to help a little which made my husband and I decide to try to have a baby. It took us a year to get pregnant, mostly because sex was very infrequent. Now I have a beautiful 11 month old son. He is the joy of my life. The pregnancy and delivery didn't seem to effect my vulvodynia other than it doesn't seem quite as bad now. I have a wonderful understanding husband who has stood by me the whole 10 years. It seems like the world is obsessed with sex and I get so sick of sex being plastered all over TV. I used to feel like a freak. I had no interest in sex since it hurt and felt so bad for my husband. I was ready to divorce him so he could live a normal life but he wouldn't let me. I hope to see a doctor about Dr. Glaser's protocol. Has anyone else done this? Some of the things I notice that irritate the VV are: toilet paper - Northern is the only kind I will use; tight underwear and clothing with spandex; walking long distances; my period; tampons ( I never use these anymore); when I do have sex, we use the pull-out method (except when we were trying to get pregnant)-the semen burned. Things that seem to help a little: keeping the vaginal area dry (after showers I use a blow dryer on cool heat); keeping the area extra clean (but don't use douches - they irritate). I am no longer taking Elavil - I didn't like the side effects (weight gain, dry mouth, drowsiness). It is good to know I am not the only one with this problem. It is a terrible disease and I wouldn't wish it on my worst enemy. I feel for each one of you and hope you all can find the happiness that I have despite the vulvodynia. Please let me know if any of you have seen a doctor about Dr. Glaser's protocol. I will keep you posted when I try it. Thank you Dr. Glaser for setting up this website. It will be a life saver for many women.
CommentThanks to all of you who post encouraging comments...Please keep it up. They are few and far between, but they really help me. It's so important to maintain a positive outlook. I especially liked the statement, "IF YOU HAVE ONE GOOD DAY, YOU WILL HAVE ANOTHER." We need to fight the impulse to live in the moment of pain and think that the moment will never pass. I also appreciated a posting in the last guestbook (I think) that acknowledged our trials but said how lucky we are that this condition, dreadful as it is, is not visible like some disabilities are. Yes, vulvodynia affects the very fabric of our lives, but our lives can still be rich and fulfilling. We are confronted with sex at every turn, especially in the media. If you've lead a sexless life for the past few years as I have, it can be very depressing to constantly see sex in print, in the movies, TV, etc. One thing that's helped me deal with this is the realization that Americans talk about sex far more than they do it. We may miss sex, but it is NOT necessary for a truly loving relationship (that's from my wonderful husband). And who knows, someday we may be able to have sex again. Wishing you all pain-free days....
CommentI have just finished reading through the current guest book, (and crying a little!). I have to say, this guest book idea is the most wonderful, encouraging, supportive bit of info I have come across! I am 22 and I was diagnosed with vestibulitis about 2 months ago. I also have seen doctor after doctor, which have been NO help. I believe I have had this disorder my entire sexual life, although it has worsened greatly in the past year. I have not taken any antibiotics, or have had any children, or yeast infections; and to this day I have no clue to the cause. Although, reading the comments from Erica, I realized that we have something in common. Depo-provera has been my birthcontrol choice from the beginning, (off and on), but in the last 2 years: on. Do you think this could be a possible cause? Has any one else used depo previous to VV or vestibulitis? Also, to Mary: I truly understand your situation with your Fiance. I have been engaged for about 4 months, I've been with my Fiance for 2 years, and I think your story sounds just like mine! Have you had any luck getting him to understand it better? We've talked about breaking up, only because of this!!! Thank you all for your comments! Best of luck to you and I! P.S. I am using a friends computer, so I do not have an Email at this time. I will check up on the guestbook frequently if any one would like to respond to me. --Thanx!
Commentdear friends.....flax juice may not be the cure...but it will lessen the symptoms in a natural way find the recipe at www.natan.net/flax.htm
CommentI have been dealing with vulvodynia for about a year now. I was very lucky that I was sent to the University of MI. for treatment. There I entered a clinic that treats only this problem. I am not not pain free, 100% of the time and I still suffer from a lot of depression about this problem. I am taking Elavil an d I have had some success. It is not an overnight cure and the 6-8 weeks is not long enough to really see what happens. I have experienced weight but if I could get bettter and stay better, I would never complain. I have found so much comfort in my relationship with God and that I know that all things happened for some reason, even if that reason is hard to see. so please ladies, keep going and keep making yourself known because that is the only way we will ever find a cure for this awful diease. I pray for a cure everyday and I know that it will come.
CommentI have suffered from VV for a few years now. I would experience vaginal tearing and burning with penetration only. I am now working with a Nurse Practitioner in Dallas, TX who is beginning to help VV patients. I have had 3 appointments with her and I am pain free! She taught me pelvic floor exercises (Biofeedback). I believe that has made all the difference. The exercises are easy to learn and easy to do. They are basically Kegel exercises. You can do them anytime, anywhere. I have also been taking Anaprox (an anti-inflammatory) and Flexeril (a skeletal muscle relaxant), calcium citrate, and Elavil. I am now stopping the medication to see if only doing to exercises keeps me pain free. I can't tell you how excited my husband and I are that we are once again enjoying intercourse. I encourage all of you to try biofeedback. If your OBGYN doesn't have the equipment or knowledge, maybe he/she can refer you to someone who does. Stay optimistic and good luck!
CommentHas anyone here ever experienced sharp almost thorny like pokes in the vestibule ? Is this a common symptom of vulvodynia or something else? Please respond as I am feeling anxious over this. Thank you.
CommentDr.Glazer,I posted a message about a chat forum on here so we ladies could meet up to chat about our condition since we cannot get the chat room to work here..but you removed my message.. was I not supposed to post a message like that? I'm sorry if I was not supposed to-just thought it would be great if we could have a support chat group..we have tried and tried to get the chat forum on this site to operate but can't. Again I apologize for doing anything wrong..thought it was a good idea at the time.
CommentI discovered something interesting that I wanted to share with everyone in hopes that I might be able to help at least one person. For the last 7 years of my marriage I suffered terribly from vaginal pain. After having some very bad yeast infections early on in my marriage, my vaginal skin would become terribly irritated and red and develop cracks that sometimes bled. These bleeding cracks sometimes spread all the way to my rectum. I was miserable. My marriage was suffering, sex was horrible and I was at my wits end until I found this website. Some of the things the women described were exactly what I was experiencing (i.e., vaginal burning, bleeding, painful sex, etc.). I subscribed to the list and started receiving e-mails from everyone about their experiences. I think it's important to say that I have never been officially diagnosed with vulvodynia by a doctor. I have only self-diagnosed myself based on what other women reported. No doctor I have ever been to has been able to help me, and I've been to a lot. Every time I went to one to complain, they said they saw nothing wrong with me. I had test after test ran on me and they would all come back negative. I finally gave up. Well, here's what I discovered all on my own. I'm very lucky that my cure turned out to be the simplest of things. I think most of us are so sure that something is terribly, terribly wrong with us that we overlook the simplest of things. I have been pain free - bleeding cracks and all, for over a year now all because I simply quit using soap in my vaginal area. Everytime I would bathe with soap I would burn like crazy. I always thought that it was the contact of the soap with my open bleeding cracks that was causing the burning, and it was, but it never dawned on me the reason I had the open bleeding cracks in the first place was because of the soap. So, I would just keep on washing with the soap and keep right on suffering through it. Well, one day while in the shower, I decided to try my 2 year old sons Johnson & Johnson's Baby Bath for Sensitive Skin. BAM!!!!! Guess what? It didn't burn me when I bathed. I used it again the next day - same result. After one week, my cracks were healed up and I suffered no more. Just like that! I couldn't believe that the solution to my problem could be so simple and right in front of my own eyes. I couldn't believe that I had never thought of this before. In fact, my doctor is the one who told me to use only Ivory soap becuase it was the most gentle. Well guess what? It made my life a living hell!!!!! I don't use anything other than the baby bath now. My problem is completely gone. I cannot tell you what a difference it has made in my life. It makes no sense to me because all my life I have used regular Ivory soap to bathe with and have never had a problem. Why all of a sudden after having some yeast infections I would develop an allergic reaction to soap is beyond me. It never occured to me that I could have possibly developed an allergic reaction to something as simple as soap. Sex is wonderful, my marriage is back on track and we're talking about having another baby. I find it amazing that none of the doctors I went to were able to recognize an allergic to soap or even suggest it. I went through years of hell being depressed and wondering if I had to live the rest of my life like that. Now, I realize that this simple solution may not be a cure for everyone, but if I can help just one person by telling my story - I'm happy to do it. I don't wish to minimize anyone's pain because I sympathize with everyone here. I just know that our pain varies from minimal to extremely painful and perhaps my story can help someone. I wish you all well. If anyone would like to e-mail me personally with questions, please feel free. I'm at mhansen@slk-law.com. Thank you.
CommentHi. I'm a vvs sufferer from Melbourne. I've tried gynos, naturopaths, feldenkreis physios, massage, and am now trying a Chinese-medicine gyno, with mixed results. Has anyone from Melbourne got any other leads? Gynos I've seen tend to put down the concept of womens' support groups (one said "they sit around and winge"). I think the ability to share our experiences, disappointments and breakthroughs is of fantastic benefit. I'd love to start a Melbourne coffee group. I've had 4 years of feeling sore and hopeful - now it's time to make the most of life as it is.
CommentI am so thankful for this site. I have been suffering for two years now and it came on very suddenly after a 24 hour flu. I thought I had a bladder infection. Have been to 9 doctors and so far nothing has worked. I'm scheduled for a colposcopy but is this necessary as I have had a biopsy already. Does anyone out there know of a biofeedback specialist in the San Francisco or East Bay (Oakland, Hayward, Fremont etc.) area of California? Please let me know. Yes, we need to all stick together and get more research done on this. My husband is wonderful, but I have a 35 year old daughter who thinks it's all in my head. Have not been able to work and the depression does get to you. Doctors will not give you pain pills. Right now I don't care if it only masks the symptons as nothing else is helping, but can't get any help there. If you have lower back pain there seems to be no problem getting pain pills but not for this...I don't get it. It forces you to lie, which I haven't stooped to yet. Let's keep talking. Susan
CommentI just posted a few minutes ago but forgot to ask a question. I am 55 and dye my hair. Does anyone know if dye could cause any of these problems...burning and itching. I know it can go into your bloodstream, but could it be a factor in this condition?
CommentHi all..heres hoping for pain free days to each of us.I wanted to let you know of a site for support I found.Would encourage any and all to visit there.Web address is http://clubs.yahoo.com/ once there simply type in Vulvodynia Support Group in the box provided..it will take you to the site.
CommentI have been suffering from this disese for 12 months now and I am still fighting it. I was just told about this site and hope to learn about this problem more and some treatments. It is a very frustrating problem and it's hard to deal with sometimes.
CommentI wanted to write and give everyone a little hope. I had a baby girl in April '98. That is when my problems started. My baby was only 6 lbs 12 1/2 oz and I had only a small tear. When my husband and I tried to have intercourse at the 6 wk mark, it was extremely painful. I thought that I had just not healed properly. However, even 6 months later, the pain was just as horrible. It took a while to get a diagnosis of vestibulitis. Several doctors, and specialists were seen prior to actually getting diagnosed. This has been going on for 16 months. I have tried several things, antibiotics, estrogen cream and anti-depressants. I still take the anti-depressants for sanity reasons however, I am on a lower dosage at this point. We finally had intercourse the other day nearly pain-free. I still use the lydacane (spelling?) cream for a numbing effect but am going to try to wean off of it slowly. I feel so happy--like a weight has been lifted off of my shoulders. I hope that everyone can find a cure like this or similar to this. I hope that this email gives everyone a small ray of hope. I am praying for you all! On June 24 of this year, I was given the same operation that was shown on The Body Human:2000 on CBS. I still have some pain when my husband and I have intercourse, but it seems that as I heal more, the pain is much less. The pain is extremely less than prior to surgery. I feel like a different person. I once again feel like there is a cure for this horrible disease.
CommentRe:Leisha, please don't call an operation that is not known for having a very high success rate a "cure" for this condition. As it gives false hope to others.You are fortunate it seemes to have helped you,but I doubt it should be considered a cure. And any operation carries risks.I've talked to many many women who endured the "operation" and it was not successful.The medical community should be encouraged to keep looking for other solutions to this problem and not resort to carving on us women.As has been stated by various women on here-if this were a problem affecting MEN's privates-there would be a mad dash for a CURE and I'm sure surgery on MEN would not be the option of choice.Ladies-let us not give up in Demanding we be treated with the respect we deserve and allow the medical profession to use operations (like the have done for years with hysterectomies and tubal ligations) as the ONLY course of action to help us.
CommentI'm considering acupuncture for my vulvodynia/vulvar vestibulitis. If acupuncture has been successful for you, would you please email me or leave comments in the guestbook about your experience? I have pelvic floor tension, tight fascia in the pelvic/sacral area, tightness and irritation at vestibule, dry and tight skin in folds of labia. Thank you.
CommentI've been recently treated for chronic yeast infections and vulvadynia. I'm currently taking amitriptyline, zoloft, provera and most recently added sporanex. My clitoris is very swollen and sore. I have bouts of itching that are horrible. I was also prescribed boric acid suppositories which will cost me $70. I've spent so much money on medications. I'm also currently on a low oxylate, virtually sugar free and wheat and yeast free diet. Is my doctor diagnosing me correctly? Should I be taking these medications? Help!!
CommentI think the current guestbook is full. How do we start another one? Thank you again so much for this site.
CommentHi! I just found this site, and it brings me comfort to know that I am not the only one suffering from Vulvodynia. Sometimes I feel like I am the only one in the world who is suffering and in pain. I am a professional woman trying to cope with career and marriage. I want to know if anyone has been diagnosed with Intertial Cystitis (bladder disease), Doctors have told me that is why I have vulvodynia, apparently they seem to think that one is related to the other. Any thoughts??? What is this low oxylate diet? Someone please let me know. Does anyone have any tips on making intercourse more comfortable -- I am so tired and depressed that I can't be the kind of wife and want to be to my husband. I hope and pray that some day all of us can live normal lives. Thanks!
CommentThank goodness for this web sight. I never knew there were other people out there like me. I'm 22 years old and have been suffering from vulvodynia for about 1 1/2 years. I was diagnosed about 6 months ago and haven't really learned much about it until now. My doctor has not been very informative. When I first starting having problems, doctors kept thinking I had an STD. I was so scared that i had contracted something from someone...but I had always been so careful. When all the tests kept coming back negative, I finally was sent to a specialist. I was beginning to think that it was emotional and it was all in my head. Some people thought that maybe my body chemistry wasn't compatible with my boyfriend at that time (we've broken up since then mainly because of "initmacy" issues...after 2 years). I've been getting yeast infections since I was 15, but in the past two years I've had at least 1 every 1-2 months. I also had a constant urinary tract infection....and then I passed two kidney stones. But what I'm finally beginning to realize is that they're all connected. I was told to have a low oxalate diet because of the stones, but I didn't realize that it could help me with the vulvodynia as well. What also seems to help is drinking ALOT of water. I'm using some creams and some medicines, but nothing makes me feel 100%. Some days I look red...some days purple and swollen and some days I'm just slightly red. But everyday is different. I feel as if my sexuality and femininity have been taken from me. Why are we the ones that have to suffer with this disease? What did we do to deserve this? I don't want to start a relationship with anyone because I'm afraid to get to the point where we are ready to make love....and it will be extremely painful and I'll be starting all over again. I don't know if I could take another relationship like that. How do your husbands and boyfriends and fiances deal with this problem? Are there decent men out there that don't care about sexual relations? Please someone respond to me.
CommentThis is in regards to using the word "cure"...obviously, what "cures" one person may not work for another, but I don't think it's a reason that person for whom it worked, can't call it her cure. I had vestibulitis for almost 3 years, and had a vestibulectomy in May '99. I had tried warm baths and Temovate, had tried interferon injections. But the surgery worked for me, it was my cure. I have no pain at all, and my husband and I have successfully gone back to having a love life that feels complete. I would be happy to talk to anyone who would like to hear more about my experiences. I understand what you're saying when you don't want to call surgery a cure-all, but remember for some people it *does* work. As for me, I was at the end of my rope, there was very little else to try. Good luck to everyone...
CommentI was very sick for 3 years following an abscessed tooth and then root canal. From reading the symptoms of vulvodynia and also I believe the last gynecologist that I went to called my condition by this name, I had vulvodynia. I was very healthy, hardly ever went to the doctor before this. I always associated my poor health to the root canal. After having the root canal pulled the symptoms went away over a period of months. If you would like to talk further, please feel free to send me an e-mail.
CommentI am also glad I found this site. I have been suffering for the last 11 years with reoccuring bladder infections and yeast infections. One doctor told me it was because of the birth control pills I took. Because I had an infection about every month . So after the birth of my last child I got my tubes tied and went off the pill, thinking that this would cure the problem with the yeast infections and the pain. But it didn't. The only thing I notice was I didn't have the cottage cheese like discharge anymore. But I still have the itchy and burning sensation in my vaginal area. I also experience pain during intercoarse about 90% of the time. I use to think it was just me. But I read an article in our local newspaper that described a number of things I have been experiencing for the last 11 years. I couldn't believe it. I showed the article to my husband who agreed that this is probably my problem. I too went into the www.ppodsyndrome.com and I took the questionaire and I couldn't believe that it said I probably did have this problem. I would like to learn more about this disorder. I also have complained to my doctor about the pain I experience and they tell me nothing is wrong or I just have a urinary infection. I wish more doctors knew about this disorder so that maybe more women could at least be diagnosed properly instead of being told nothing is wrong so we feel like its just us. That it is only in our heads. The pains are real so give us a break.
CommentI'm writing in response to chrissches@aol.com, who wanted to know about tearing in the genital area. I'm now 26, and I was experiencing tearing, as well as burning, itching, etc., for about a year. It began (as seems typical) after a series of bad yeast infections--the yeast went away, but the symptoms didn't. My college doctor tested me for everything, prescribed a lot of topical steroids (which only made it worse) and finally told me it was something I would just have to live with. NEVER believe someone who tells you that--or who tries to make you think it's all in your mind! I switched doctors, and found one I'm really happy with. She blamed the tearing on my skin having been weakened by all the topical steroids, and put me on an internal estrogen cream every day for two weeks, and weekly thereafter, to help strenthen the skin. The tearing has stopped!! She also said I had an unusually high vaginal ph, and advised me to go off the birth control pill, because it can raise ph. In addition, she told me to start taking Acidophilis--basically, the same bacteria that's in yoghurt, but now I get it at the health food store and take it in capsules. Unfortunately, I still have the burning. It's better overall, but it gets markedly worse the week before my period, when my doctor says that ph is naturally higher. The next step is to try a low-dose anti-depressant, on the theory that my nerves just got accustomed to the pain during all those yeast infections and are still mis-firing. (The doctor put it better). She says she's not ready to diagnose me with vulvodynia yet, or to conclude that it's a chronic condition--so I hope she's right! Good luck to everyone!
CommentRe:Erica's response to someone else saying surgery is not a "cure". I happen to agree that surgery should not be called a cure till until it can be proven that it will be 100% effective.READ the stories on here ladies..have you Not read about the trauma and disappointment some of these women have gone through who have allowed themselves to use surgery as a last resort????? I say we ned to ban together and demand the AMA treat this condition in a more serious manner and stop experimenting on us as though we are lab rats. IF and I stress IF surgery has been a totally 100% cure for some of you-then I applaud you & your doctor.But let's face facts-we know from the messages left here that surgery has proven to be more of a failure than a success story.I just don't happen to think we should be encouraging women to use surgery at this point.
CommentI left my comments about 9 months ago, and then felt I really didn't have VV, so I stopped writing and reading. I just didn't want to face it. I was given the wrong diagnosis as many of us are and it just prolonged the agony. Steriods must be the worst thing you can put on an already burning and itchy vagina!!! It took almost 5 months to wean myself off the steroids with the help of a wonderful dermatologist. I have been to a urologist so many times I lost count. I kept getting told I had no infections. Well I didn't most of the time but sometimes I did. I landed in the hospital last May with a severe kidney infection. I think all this started last Sept. when I had ecoli in my bladder and then in my vagina. It went back and forth for 3 months and I was on heavy antibiotics. When I finally got that under control I had VV. Of course I didn't know it nor did my doctor. I have since found a very kind doctor that says it can go away just like it came. For no reason. He told me to try all the different things out there that we have all tried and good luck. He said if it gets really bad we can try the antidepressants but he doesn't want to do the surgery. He feels it is to risky, as with any surgery you get scar tissue and add that to the other problem I may be worse off. I have found that I can intercourse if we are very careful about three days after my period, for about a two week period but only maybe every other day and very slowly. I use unscented toilet paper and unscented soap. I take sitz baths in baking soda when I feel really uncomfortable, and that at least takes the sting away for awhile. Sex is not like it use to be but for our marriage we both know that we love each other for better or worse and we need to stay together. No, sex is not everything but it is important. I have learned that if you really love each other there are other ways to love. We take baths together and give each other facials and wash each others hair. We hold each other close at night and we care about each other. Something could happen to him that he may not be able to make love to me and I know I would stay with him. You can't leave someone because they aren't perfect. Oh one other thing that really helps me is I have found all cotton tampons and I use a lubricant to place them and I push the string up in my vagina so it doesn't rub on my vulva and make it sore. If I do get really sore and the sun is shining and not to cold out I sit with my legs apart and get some sun. That was my husbands idea and it worked. This winter I think I am going to get a heat lamp and if I get sore try it a few times. I also take bactrim twice a day and that is the only thing that keeps the bladder infections away and keeps me from having frequency and burning. I pray it goes away but till then and for now I have to be positive because negative just hurts to much. If anyone needs a friend I will try to be there. Write to me whenever you want. I hope some of my tricks help someone else. Try everything one at a time and maybe something will work. Oh I also have a very sore rectum and I use A&D ointment on that area but I try to keep all that stuff off my vaginal area. We use a lubricant called Slippery Stuff it isn't sticky like KY jelly and it doesn't seem to irritate me. Good luck to us all and god bless. Oh I also have Graves Disease but it is under control. I had the radioactive iodine treatment last July and I am on thyroid replacment and feeling better about that each day. Best to us all, Lyn j
CommentI made a post to this book yesterday. It may have sounded too good to be true. I have read many of the posts in the guestbooks and I truly can sympathize with those with this problem. It is hard to read what others have written, and it is impossible to read without being reminded of what I once lived with for 3 years. I really do want to help others. Vulvodynia may be caused by different things, and I'm not saying that what helped me would be a cure for everyone. This problem just about drove me out of my mind. I knew if I ever got better that I wanted to help others. It is something I never will forget and hope that I never have to live with again. Melanie
CommentAfter reading the guestbook and shedding a few tears, I decided to write about my own experience. I'm hoping to reach out to other VV sufferes so that they can help me cope,treat and try to understand this disease. I'm 22-year-old student who has suffered with VV for over two years. It might not seem long to most but for me these two years have seemed like an internity. Like evey othe VV sufferer I've have never felt so confused, frustrated and helpless in my entire life. My boyfriend has been incredibly supportive and patient. We have been dating for over three years and our first year of our relationship we wad frequent intercourse. I come from a small town therefore I have not found a doctor who is familiar with my diseease. My doctors have given me topical creams and insured me that it would probably go away. It has only gotten worse. I began to experience terrible pain during intercourse after I had received laser surgery for the removal of genital warts. The whole process was painful and embarasing. I am convinced that the lazer suregery somehow triggered my nerve ending to become extremely sensitive therefore making intercourse extremely painful. My boyfriend and I live apart because of our studies, I am also reminded of my disease when he comes to visit. I feel as though I am an inedaquate girlfriend and I am terrified about my future as a wife and caregiver. We are hoping to have children in the future but I'm scared about my chances of becoming pregnant and proper delivery. Because I am a student my finances are tight, I am unable to visit medical professionals in the States. I am currently living in Calgary, Alberta and if anyone knows of a doctor familiar with the disease PLEASE let me know!!! I would also like to receive any tips from other VV sufferers. Your stories have inspired me and given me hope that we all can cope with this disease while leaving a healthy life. good luck to everyone my heart felt thoughts and prayers go out to every VV sufferer.
CommentHi everyone. What a relief to find a resource like this! I have been feeling so depressed and alone. I am 27, and just been diagnosed VVS FINALLY after 6 years of being brushed off by doctors, and refered on or told it was in my head. My bf/fiance of 7 years is struggling to work out if he can "Put up with being a sexual matyr" for life...I feel soo alone...Any ideas, suggestions, similar tales???
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CommentI have written in the guestbook before and would like to let anyone interested know about a procedure I had that, with Elavil, has taken away about 90% of my pain. It is called vaginal fulgeration. It sounds bad at first but keep in mind that you will be out for the procedure. It supports the theory that of course the nerves in the area are hurting constantly for some reason that for most of us is only guessed about. It involves an electric needle that is used directly on the affected nerves. It basically burns the nerves and therefore they are no longer there to cause the pain. Before my surgery I had about 12-14 of these trigger points and after having it done twice, I now seem to only have about 2. Believe me, it was worth the discomfort afterwards to be able to have a pretty normal sex life with my husband again after two years of none at all. I also am on Elavil which has helped to rid me of most of the rest of the pain. I no longer hurt while sitting or walking everyday. I still have a couple of uncomfortable days a month, but it is so much better than hurting everyday. If anyone is interested in my surgery, just e-mail me and I'll try to answer any questions I can. I want to add that this is not anything like the laser surgery offered to us at all. I refuse to have someone cut pieces out of me and make me even worse with the scar tissue. That is why I consented to the fulgeration. It deals with areas too small for just the human eye to see without help and therefore does not cause large areas of scar tissue. I have recently moved, and my current doctor who didn't do the procedure agrees that it has helped me considerably. He said that it is almost like having plastic surgery on the area. Good luck to all of you. Vulvodynia is something that the world needs to acknowledge and do research to find the cause and a cure. At least we have each other to talk to and maybe someday we will be able to help more doctors realize that this is a real problem and not something just in our heads.
CommentThere have been a few comments made as to whether or not people should call their success stories "cures". I don't care to get into that argument but what worries me is that women out there may shy away from sharing their success stories (or "cures" as they may wish to call them). PLEASE DON'T! I don't think I would be able to stay positive if it weren't for your encouraging comments. I WANT to hear about your cures. I realize that what works for you may not work for others but I'll never know what my options are unless I hear them from you. I have already found some success with the comments made. I used that Johnson & Johnsons baby bath for sensitive skin after experiencing severe burning with the hypoallergenic soap I was told to use, and I feel much better. I also read that some women have experienced recurring/chronic yeast infections. I found that I experience 50% less pain after taking gynelotrimin yeast infection suppositories about 1/month. This leads me to believe I also have recurring yeast infections. Until I find a doctor knowledgeable about this disease, your comments are all I have. Thank you all for making me feel normal and not so alone. I appreciate everything you have to say so please, if you have found a cure for you, it may be helpful to someone else. Reading your success stories is what gives me hope that I too will some day find a cure for me. Best of luck to you all and please don't give up hope. As long as we continue supporting each other we'll get through this. Ann
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CommentSince I made the first post a few days ago, I have received an e-mail from a lady who began experiencing vulvar pain the same week she had a root canal. If you have a root canal or if your pain began around the time of a root canal, please contact me. I would be interested in knowing just how many women who suffer from vulvodynia have root canals. To read more about my story, you can visit: http://members.tnns.net/kyarbrough/rootcanals.htm or http://www.com-prod.com/kyarbrough/rootcanals.htm Melanie
CommentFirst I would like to thank everyone for sharing their stories with everyone. About four years ago I too began having problems with pain in the vulvar area, burning, redness, swelling, ect. I'm 21 years old and just recently married. The pain has prevented us from any kind of intimacy and too make a long story short it has effected our relationship. I have seen numerous doctors over the past few years. They of course do hundreds of dollars worth of tests that reveal nothing other than an occasional yeast infection. In March I went back to my regular physician and he had this brilliant idea that "if you just want the pain to go away bad enough it will." He sent me home with this thought and Kegal exercise and a $200 bill. Neither the thought or the Kegals helped by the way. So my husband and I started looking for answers on the internet hoping to find something that will help us. We found that washing my undergarments alone, once with soap and once without helped with some of the irritation. I also rinse myself with a bottle of luke warm water each time I use the restroom and then apply Vitamin E oil. This is a very cheep way to cut out the irritation. ( the bottle was purchased at Wal-Mart in the travel soap section for around a dollar) Just yesterday I saw another physician hoping for more answers he has placed me on Hydrocort 2.5% in Eucerin Cream. (If anyone has taken this you experience would be appreciated.) The new physician seems to be really good. He actually listened and didn't just say it's all in your head. Instead he ran a couple of tests and put me on this cream. If anyone has any sugestions or just wants to talk I would be happy to help in any way I can. Sincerely, Monica
CommentI posted in the guestbook that I had a surgery that has been quite effective in helping me with this problem. Maybe for some of you I used the wrong word which is "cure". I do not feel that this surgery is for everyone and have even read that there are people out there that has had the surgery but no success. I will change my word of "cure" to "success for me" if that helps anyone. There is no true cure out there as of yet. Yes, I feel that there should be someone out there trying to locate this miracle cure. I hope that for all of the women out there that it will be soon. It breaks my heart to hear all of these stories. However, I did want to give some sort of hope to the women that suffer from this horrible disease. I pray that there is a cure found that will help everyone.
CommentI had written last week about the use of the word "cure", and now I am responding to Ann's wanting to hear more success stories. When I was trying to decide whether to have surgery or not, first I read this guestbook to see if there was anything else I could try first. I wanted to see what other people were doing. I found many more negative stories here than positive. Once I decided to have the surgery, I found that I couldn't read the guestbook anymore; I didn't want to hear about how surgery did NOT work for people, I needed to focus on my own recovery. I am glad to hear that some of you appreciate hearing the success stories as well as sharing the painful, frustrating stories. I think it's important for all of us to be supportive, and appreciate the sharing, whether it's good or bad. I feel very fortunate that surgery worked for me, and I am glad that there have been a couple of people who have emailed me and said I have helped them by sharing my experiences.
CommentThank you Dr. Glazer for this website. I'm 39 years old, history of bladder infections, tetricylene for 2 years, yeast infection, interstycial cystitis (undiagnosed for 1 year - "in my mind") then VV hit 8 months ago with the horrors that you all have experienced. Finally found wonderful Dr. Leslie Sadownik in Vancouver, BC, Canada. Having some success with amitriptiline and the IC diet (no acids). Down to approx 2-3 from high of 10. She recommends physio/biofeedback treatments but I can't find anyone so far in my home town. The depression and fear of sexual pain is so wearing on my spirit and marriage. I'm willing to share my IC information regarding treatments, diet etc. and know I'll learn alot from you all about how to fight VV. Thank you for sharing your knowledge. Information is power and we WILL beat this.
CommentHi. I am searching for some help for a friend of mine. She has been suffering for more than 15 years from what is now thought to be vulvodynia. She has seen doctor after doctor and has had some temporary relief, but she is still suffering a great deal. She is now extremely depressed, and this is greatly effecting her normal day to day life. I now fear for possibly her life if she doesn't get some relief, she just can't take it anymore. Please, if you have any suggestions, email me at ricknhelen@kih.net . Thank you thank you so much. Helen
CommentI live in Dallas, TX and typed an entry on 9-13-99. I submitted the wrong e-mail address by accident and I wanted to correct the mistake.
CommentI haven't been diagnosed with vulvodynia, but I assume that's what I have. I had recurring yeast infections since February. At first, the meds that the doctor prescribed, helped and the infection was gone. However, it returned after a few weeks. I made the mistake of trying to continue with the cream the doc had given me. This didn't seem to help. When I saw the doc again he prescribed more of the same. This did not have an effect either. I continued to have moderate to severe pain all the time and was unable to sit for long or wear tight trousers. When I went to see the doc again in August, he said there's no yeast. A culture he took, also turned out ok. He said there's only a local inflammation, gave me an anti-inflammation cream, and told me not to return again until next February. Needless to say, the cream did not help, and the pain and burning are still there. Since I knew that's something's wrong, I started searching through the Web, and found this site. The info in this site and the posts are very encouraging. I've found a listing of a PT in my area who does biofeedback and myofascial release and I'm going to get in touch with her next week. I'd like to hear from women who've undergone this treatment or are undergoing PT now. Best of luck to everyone.
CommentLadies, I too suffer from VV, but I do not believe that I have as a severe case as some of you. I have found some success with taking calcuim citrate to combat some of the pain. For anyone that has not heard how calcuim citrate works, this is what I understand from what I've read and from what one doctor has told me. Calcuim oxalate is found in many foods we eat, chocolate, nuts, spinach, rhubarb, strawberries, etc. Calcuim oxalate is the same constituent that causes kidney stones. Calcuim oxalate is concentrated in urine, the crystals that it produces accumulate in the vulva area and produce the pins and needles feeling that we feel. Taking calcuim citrate, Citracal, produces a chemical reaction that breaks up the calcuim oxalate in your system, therefore not allowing the crystals to form. I believe that it's worth trying for everyone. I started off taking 8 tablets, 1600ml a day for several weeks and watched what I ate (still do). I still take 2-3 tablets a day. It has helped me a lot my pain is not severe as it once was. It's cheap, it's worth a try. Questions I have for you: 1. For those who have tried the Glazer Protocol, is it worth it? Please email me, I'd like to try it. I live in Northern Virginia. 2. Does anyone have a problem with low white blood cells?
CommentI was diagnosed with this condition several months ago. A year and a half ago I noticed tremendous pain trying to have intercourse during my third month of pregnancy. There was minimal pain for several months before, and now the pain seems to have increased. It is not a constant pain, but occurs only with pressure and has recently started burning and itching. I just realized how serious this condition is by looking at this website. I kept telling myself that we hadn't found the cure just yet but we would and that this wouldn't be a long term problem. Well now I am very discouraged. One year ago I never knew that this existed. I am relieved to find this site and to find that I am not alone. I am currently in the process of weaning my baby so we can start to fight this full force. My condition seems relatively minor compared to others of you (with whom I sympathize). I started to try the estrogen cream but got scared to continue to do so after looking at this site. I was inserting it into my vagina and now wonder it that could have future reprecutions. If anyone has personal experiences with estrogen I would love to hear them.
CommentI haven't been diagnosed yet, but my symptoms seem fairly consistent with all of yours. My heart goes out to those who speak of suffering with VV for years--it's been 6 months for me, and I'm already to the point where I don't want to live any more if it's always going to be like this. I'm not a wussy--I've had bad irritable bowel syndrome and lichen planus for 14 years. (Took 8 years to convince a dr. that it wasn't all in my head and do a biopsy for the lichen.) Used high-potency steroid creams for 3 years, and the horrible itching went away. Then, six months ago, got symptoms of perimenopause and a bladder infection all at once. I kept telling them that, besides urgency, the pain was "on the outside." Urine test came back "borderline," but they put me on Cipro, which gave me horrible vag and rectal yeast, but didn't clear up the "bladder infection." Took Diflucan for the yeast. Then took two more courses of antibiotics, then Flagyl and Flagyl gel. Thing got worse. Was also started on HRT because estrogen level was nearly nonexistent. Right now I've been taking Macrodantin antibiotics for the 4 weeks straight. Vulvar pain has become intense and constant. The area is dry, red and cracked open, with a few small sores that don't heal. Can't stand to sit, walk or wear underwear. Dr. acknowledged that I look "horribly red," and prescribed topical estrogen cream and Terrazol. Both burn like salt rubbed into a wound. I don't have health insurance, and I'm spending hundreds of dollars and just getting worse. What a nightmare.
CommentI wrote a message on 9/28/99 and put in the wrong e-mail address. I just wanted to let everyone know the correct one. Thanks
CommentI was wanting to join the mailing list, but the I keep getting sent to a page that say this page is not available??? Also has anyone been put on steriods? If so please let me know what effect they had on you.
CommentI'm glad to know that I'm not the only one and that it's not all in my head fortunetly I have good doctors. this is an excellent web site and I will be checking in frequently. thank you
CommentI've been dealing with vulvodynia for approximately two years now. Fortunately, I have a very understanding and sympathetic husband. I've been reading over some of these comments and I've seen many women commenting on the infamous High Oxilate Diet. In the August issue of a magazine my gyno gave me it was said that it has been discovered that the diet has proven to be ineffective. I know this little tid bit won't do anything to help the pain, but at least knowing this you can eat your favorites again. Food is the next best thing to sex anyway!
CommentDoes anyone else suffer from symptoms that go away upon lying down? I suffer from severe pelvic and vulvar varicosities and have tremendous vulvar pressure and pain. This pain is relieved by lying down. After a partial vulvectomy, I developed excruciating vestibulitis-like symptoms. The rawness and burning were eliminated with monthly Lupron injections. I have residual pressure and pain from pelvic congestion syndrome that we just can't seem to cure. Since the Lupron has been so beneficial, and since hysterectomy is often a cure for pelvic congestion, I am having a hysterectomy next month. It may, or may not, cure the pain caused by dilated vessels. I would love to hear from anyone suffering with pelvic congestion or vulvar symptoms that are relieved by lying down. To those of you suffering with rawness, burning etc., my heart goes out to you...the rawness was pushing me over the edge. Please ask your doctors about a trial of Lupron. Estrogen is not my friend! I will be thrilled to get rid of my ovaries!
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CommentI have severe vulvodynia. I was 17 when I first started having problems & I was told by a doctor that I had herpes. She did no tests, just listened to my symptoms, took a look, and gave me her diagnosis. For years, I assumed that was my problem, but wondered why it was constant and why my boyfriend, now husband, never had any symptoms - especially when he's the one I contracted it from. After reading through the guestbook, I've seen that many of you have been tested for STDs which came up negative. Now I'm confused. Was I diagnosed wrong, or is that what triggered my vulvodynia? Anyone in a similar situation? I would appreciate any responses to this situation through this guestbook. Thanks.
CommentJust wanted to say that I am concerned with Michelle's entry of October 4/99 commenting on the low oxalate diet. The low oxalate diet combined with calcium citrate has given life back to hundreds of women. My level of pain increases drastically if I eat something containing oxalate. Some women on the diet have become completely pain-free, and we should not diminish their success on the diet.
CommentJust wanted to say that I am concerned with Michelle's entry of October 4/99 commenting on the low oxalate diet. The low oxalate diet combined with calcium citrate has given life back to hundreds of women. My level of pain increases drastically if I eat something containing oxalate. Some women on the diet have become completely pain-free, and we should not diminish their success on the diet.
CommentI've been diagnosed with VV, I've suffered for about a month now, can anyone tell me if they know of a specialist in the Chicagoland area that pracitices Dr. Glazer approaches. Also can someone suggest either a website or tell me what foods I should steer clear from. I keep hearing that I should stay away from high oxalate foods, I just don't know what that is. Please help!!! I would appreciate any assistance you can offer.
CommentI am in complete astoundment to see so many contributions. I am filled with so many emotions I don't know where to begin. This has been a great place for women to tell their story and acknowledge their experience with support. I am 24 years old. I have had vulvar vestibulitis for 5 years. I was living in Malaysia for 5 months. While I was their I noticed I was inflamed and had burning sensations. I came home to the U.S. and described my symptoms to my ob/gyn only to be dismissed and given treatment for a yeast infection. I went back four more times seeing different doctors each time. I was treated for bacterial infections of the bladder and vagina. Nothing helped. I was frustrated, and not a single doctor seemed to care. In total I have seen 12 different doctors, all with different diagnoses. The last two have been the most helpful. For the first time a doctor actually sat down with me before the initial exam and talked to me. Even though I have had vulvar pain for 5 years I was finally diagnosed with vulvar vestibulitis a few months ago. I have tried many different diets, herbal supplements, vitamin/mineral supplements, acupuncture, various forms of massage and bodywork, as well as drug therapies from my doctor. My symptoms include fatigue, constipation, low back pain, nerve pain in legs, and pain with touch and intercourse. Most successful treatments have been acupuncture in conjunction with yeast free diet, psycho-therapy, getting off the birth control pill and more recently recieving craniosacral therapy, and visceral manipulation(externally and inter-vaginally). I have a very supportive partner but it has been a tremendous struggle. I think the treatment for this can be highly individualized. I want to try biofeedback. Improving one's overall health through a healthy diet of whole foods, inner work-mentally and emotionally, and working with doctors is essential. Most importantly though is having a voice!! Listening to everyone's story was phenomenal. More media coverage is neccessary. I missed the CBS special, if anyone has a copy or info on how to get one please let me know. I think Oprah should do something. I saw her show on low labido in women and that was very helpful as well. I'm interested in starting a support group in my area of Michigan if anyone has info on starting one or are living in Michigan, please fell free to email me.
CommentI suffer from lichen sclerosus and wanted to know if there are others out there who also have this terrible skin condition of the vulva. My condition has just spread from the clitorial area to the vestibule. ANY INFORMATION OUT THERE WOULD BE MUCH APPRECIATED!!! God bless you all. FYI - I have tried Glazer's biofeedback for my vulvodynia and have been pain free for months now. I strongly believe in biofeedback and recommend you all to give it a try!!!!!! YOU HAVE NOTHING TO LOSE!!!!! denise please email me at d_dichiara@hotmail.com
CommentI have been suffering from vulvodynia for only 6 months. I was referred to a dermatologist. My dermatologist first prescribed and ointment, then a tricylic antidepressant (doxepin). As far as I can tell both of these are normal things to prescribe. But now she has me on Claritin (the allergy medicine). I haven't found this suggested in any of the research I've done. Does anyone know of this or something similar being tried?
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Commenti was diagnosed in 1991 and sought out treatment all over the midwest. i am now pretty much "cured" except for very rare flare-ups caused mostly by diet. i had laser, barts removed, low oxalate diet, and biofeedback. all of them together got me better! i do not believe one would have worked alone! i still follow diet and still use biofeedback that i was taught when needed. i was a pt of dr richard reid in detroit !! he was the only one who believed me! i try to keep up on the disease b/c i hope maybe i can help someone or at least give them hope that they can get better!
CommentThis website is a blessing - I've received more info here than from many doctors. While scanning the stories I noticed one that said to stop using soap and switch to Johnson & Johnson Baby's Body Wash. I have been using it now for the past 3 days and my pain has been dramatically reduced. Give it a try - it can't hurt. STOP USING SOAP!! Thanks to all of you for sharing your stories.
CommentHello all, me again. If you haven't already found it - I have just discovered a fabulous website. www.vulvarpainfoundation.org that has lots of great information. wishing you all pain free days...
CommentSomeone was looking for a list of low oxalate foods. I found one at the following website: www.branwen.com/rowan/oxalates.htm hope this is helpful.
CommentThere has been alot of interest in my posting about the medication, Lupron. It took me 8 months to realize my symptoms of rawness, burning, and swelling were present on days 3-18 of my monthly cycle, with an excruciating peak in pain for 4 days around ovulation. This indicated there was a hormonal component to my problem. My doctor then turned my ovaries off with an injection of Lupron. My rawness went away, only to return when he put me on estrogen replacement. I cannot tolerate estrogen...my own or man-made! As long as I don't have estrogen in my system I am free of the rawness etc. It appears a hysterectomy is my cure. To those of you suffering, chart your pain/symptoms. A trial of Lupron just may be beneficial. If nothing else, you won't have a period until the medication is discontinued.
CommentMARLENE, I GO TO A VERY COMPETENT DOCTOR IN CHICAGO. HE RUNS A VESTIBULITIS CLINIC FOR NORTH WESTERN HOSPITAL. HIS NAME IS DR. LANE MERCER (312) 726-9338. DR. MERCER WAS THE FIRST DOCTOR TO NOT TELL ME THIS PAIN WAS IN MY HEAD. MY CONDITION WAS VERY STUBBORN AND NOW IT IS GONE. gOOD LUCK AND E-MAIL ME IF YOU HAVE ANY QUESTIONS.
CommentMARLENE, MY A DOCTOR, DR LANE MERCER (312-726-9338) IS VERY COMPETENT. HE RUNS A VESTUBLITIS CLINIC FOR NORTHWESTERN HOSP. GOOD LUCK.
CommentI've been suffering from vulvodynia for ten years! I can't believe it has been that long. I have tried everything from cordisone nose spray (in the vagina) to antidepressents to low oxolate diets, you name it. About five years into it i noticed that the pain dissapated by about 80%. The only thing i could attribute this miracle to was that I went back to work full time (after being home for three years raising my twins). I enjoyed about two years of lesser pain. Well now i am back to full blown agony. I just had my third child and i am nursing. I only have pain at this point at intercourse, but it is literally impossible to do it. I feel numb about the situation because i have been through every stage of this horrible affliction and now i feel as if i am back to square one. Why can't they find a cure? I have seen so many doctors and everyone has their own opinion about what to do. My doctor now wants to remove the vestibule glands because that is where the pain is located. Has anyone had success with this procedure? I am so afraid of making this worse because a few years ago i could'nt even wear underpants or sit without being in agony. At least now i can function and even wear jeans with out to much discomfort, I just can't have sex. My husband is wonderful about everything, but i don't feel very good about myself. If anyone knows anything about this vestibulectomy please contact me. It is comforting to read everyones notes, but it makes me so sad that there does't seem to be many answers for us. Thanks.
CommentI've been suffering from vulvodynia for ten years! I can't believe it has been that long. I have tried everything from cordisone nose spray (in the vagina) to antidepressents to low oxolate diets, you name it. About five years into it i noticed that the pain dissapated by about 80%. The only thing i could attribute this miracle to was that I went back to work full time (after being home for three years raising my twins). I enjoyed about two years of lesser pain. Well now i am back to full blown agony. I just had my third child and i am nursing. I only have pain at this point at intercourse, but it is literally impossible to do it. I feel numb about the situation because i have been through every stage of this horrible affliction and now i feel as if i am back to square one. Why can't they find a cure? I have seen so many doctors and everyone has their own opinion about what to do. My doctor now wants to remove the vestibule glands because that is where the pain is located. Has anyone had success with this procedure? I am so afraid of making this worse because a few years ago i could'nt even wear underpants or sit without being in agony. At least now i can function and even wear jeans with out to much discomfort, I just can't have sex. My husband is wonderful about everything, but i don't feel very good about myself. If anyone knows anything about this vestibulectomy please contact me. It is comforting to read everyones notes, but it makes me so sad that there does't seem to be many answers for us. Thanks.
CommentWow! I wish I'd known about this site years ago! I have been fighting with this for 10 years, my entire sexual life. I, too, have had a difficult time obtaining correct diagnoses and treatments. One source I have found helpful: A Woman's Guide to Overcoming Sexual Fear and Pain by A.J. Goodwin and M. E. Agronin I found this on Amazon.com. What I still have not found is a knowledgable M.D. in the San Francisco Area. If anyone has a recommendation, please let me know. (I'll check back here in a few days.) Thank you.
CommentHello, I'm 22 years old and I also suffer from this horrible condition. It started when I wash with soap and then a got thrush from taking antibiotics. I was also at the same time wearing thight cloths,jeans. i had this conditon in last 1 1/2 and i'm starting to realize that i have a long way to go to get rid of this constant pain and burning.The worst is 1-2 weeks prior to my period and when I'm siting from longer time.I'm on anti-candida diet at the moment and i see how i go with that. I was on Diflucanol and Tofanil ,that helped but when i stoped, everything came back. I would appreciate if any one can give me any suggestions on successiful treatments.I would try anything(especially if you tryed new anti-depresants, acunpnture or surgery ) to get rid of pain and burning. MY main condition is reddness, burning and sometimes swelling. I've just started finding about this conditions,if any one wants to talk about it please e-mail me All the best and never give up hope!!!
Commentall the best
CommentThank you Colleen C. Do you know if Dr. Lane Mercer practices biofeedback? Please let me know...I appreciate the assistance.
CommentCan we PLEASE get a new guestbook. The current one is quite long. Thank you!
CommentIt seems finding a doctor that is knowledgeable about vulvodynia is very difficult. Has anyone ever thought of compiling a list of doctors, that people have had positive experices with.
CommentIs there anyone reading this who lives in London and has any useful contacts? I've had vestibulitis for 3 years, had various unsuccessful treatments and am currently trying to find a counsellor for me and my partner to deal with the problems it has caused. I'm in West London.
Commenthi, I`m a 23 year old from Northern Ireland, and about 2 years ago, I lost about 2 stone and started wearing smaller, tighter clothes. 2 years on I havèn`t been able to have sex, have had the worst burning and itching sensations ever and my doctors don`t have a clue what is wrong with me. I found this website by chance, and because I`m at my wits end.. I`ve had canesten cream, pessaries, antibiotics for bacterial infections, swabs and urine tests for diabetes, and yet more pessaries, which stung like hell, only for me to go back to my doctor last week, when she checked my cervix and vagina and told me there is nothing wrong with me!? I`m sick of being messed about, I`m only 23, and have no children, and haven`t had sex since I was 19..? There`s something seriously wrong here, which is why I`m going to try the low oxolate diet myself, I`m determined to solve my own problem.. anyone got any advice for me? by the way has anyone ever discovered a cream/yellow discharge from their navel? I wondering if this is connected?
CommentI want to say thank you to all those who participated in my survey on the quality of life of women with vulvodynia. I sincerely appreciate your candor and your input has been most valuable. The preliminary results show that vulvodynia has a major impact on the quality of life of those it affects. Once the report is finished, I will share the final results with you. Again, my sincere thanks.
CommentThanks to Dr. Glazer. He has saved my life! My original entry is in the 5th guest book dated 4/20/98. I have been a patient of Dr. Glazer for 16 months and following his protocol for biofeedback. I have improved drastically and will never forget the chronic pain,itching and burning I experienced for the 7 months preceding my initial consult with Dr. Glazer. I have gone from a "10" on the pain scale to a"1"! I have and will continue to be diligent with regards to exercising as prescribed. Biofeedback is the only way I experienced any pain relief at all.
CommentHello sisters with vv, I suffered with various symptoms of vv since I married in 1982, mostly constant burning just in the entrance of the vagina. Went to at least 15 MDs and an assortment of alternative healers. I am a licensed acupuncturist and MPH. After my divorce in 1993, all of my symptoms disappeared and lots of sex with a new lover didn't make them recur. I had tried almost everything mentioned in the guestbooks except the oxalate diet and surgery. At the end I was using a combination of pure aloe vera and tea tree oil applied as often as I could--4-10/day, plus a Chinese formula called Clear Heat, Clean Toxins (Isatis). You might be interested in the fact that in Chinese medical theory, the Liver Meridian runs through the genital area, and so I was trying to clear "liver heat." All of a sudden, my vv returned after 7 years this week. I remember the years of horror and sleeping with a bowl of ice cubes to insert into my vagina so that I could grab a few minutes of sleep with the cool water running down before the burning would awaken me. At age 50, I don't think I can go through this again. So yesterday I started the same herbs, aloe and tea tree oil again, and my symptoms disappeared by 50% right away. If anyone had dared say it was psychological back then, I would've been furious, but now that I find myself in another relationship with a component of sexual rejection, I wonder...since my vv cleared up after my marriage broke up, and now I'm relapsing within the context of a very questionable relationship.....does anyone have any thoughts on this? Incredible to find this website, if only I had had this during the Eighties. I spent at least $5000 on docs and tests to get this info. I have an intuition that acid-alkaline imbalance is involved and would really appreciate any info on how to moniter this. Also whether estace cream helps for burning. My prayers and love are with you all.
CommentHi. I would like to know if anyone has tried Lidocaine ointment? I just got a prescription of it today. I am afraid to use it, thinking it might make things worse. As of now I am taking a Hormone called prempro, a antidepressent, and using a Hormone cream at night. Any info would be helplful. I will look for anyone's answer in the current gustbook. I check the gustbook about every day, hoping to find something new to try. Thanks again. Wishing you all the best.
CommentI live in Montana and just found a PT that deals with biofeedback, I am going to give her a try. She deals with mostly incontinence but has done some work with VV. She told me that the women she has worked with do have some success, with relaxing and feeling better. I will be glad to forward her name to anyone that would like it, just email me. Wish me luck. :) Lyn j
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CommentThis is to Mary J. who inquired about anyone who has used Lidocaine. I was given a prescription for it also, about a year ago. It did not seem to help me, but it definetely did not make me worse. My best results have come from a minor surgery I had (not the terrible laser one) and from taking Elavil. My pain is about 90% better now most of the time. If you want to know about my surgery, I'd be happy to tell you about it. I hope the Lidocaine works for you.
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