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CommentWelcome to the fourteenth vulvodynia guestbook. We open this new guestbook along with the inauguration of a new email list for vulvar sufferers, their support networks and professionals, to share information and provide mutual support. To join the group please go to: http://www.vulvodynia.com/mail.htm and follow instructions to join the vulvodynia-support email group. Thanks for all of your continued interest and participation in the vulvodynia.com website Howard I. Glazer Ph.D. vulvodynia.com owner
CommentI am fairly new to this guest book, but I did finally read all the entries in the thirteenth book. It was very valuable information but it took me three hours to get through it all. I have three small children and get many interruptions. I was just wondering if anyone had ever suggested some way to summerize the books. Especially the drugs, treatments and doctors that have proved helpful. If anyone has any ideas or thinks this could be possible, please bounce them off me. Thanks
CommentI was glad to find this on the internet. I am a newly married woman--6 months--and have never had sex except with my husband. Sex is very painful and discouraging to us both because of the pain. This information will help as I learn more about this all...THANK YOU!!!
Commenthello, i am sitting here in tears reading others stories about this condition. i am 22 and have only be married for 2.5 years. i started expriencing pain during intercourse about a year ago. i was just diagnosed with vestibulities 1 month ago(thankfully, this was the first time i went to a obgyn and he diagnost me with this), and have been put on the cream Clobetasol...i don' t know much about this condition, but i do know that waiting for 20 to be with a man and then have your sex life be disrupted 11/2 years into our marriage really disheartens me...because from what i see there seems to be no end in sight. i have gotten to the point where it hurts to urinate as well. thankfully it doesn't hurt all the time, and i feel for those that it does. i just want to thank all those who have written in this book so that others will know that they are not alone, and that we all owe a big thank you to our wonderful, patient husbands, who are willing to go through anything and still love us and be with us...and maybe someday we won't have to deal with this anymore...Isaiah 33:24 " And no resident will say ' I am sick ' "
CommentLike Kathy, I'm wondering just what it is about soy that aggravates vulvodynia in some women. If I took soy isoflavones in supplement form, would this aggravate the problem as well? Or is the high oxalate-content of soy the culprit? If anyone knows the answer to this question, please enlighten me! P.S. Julie - Dr. Glazer has an excellent FAQ at http://www.vulvodynia.com/faq.htm
CommentThanks Allison and Stephanie for writing back. I was on acutane for stubborn facial acne. Now my face is as clear as ever. As for it being a cause of vulvodynia, every doctor that I have seen and mention that to says absolutely not. But how can they know for sure?? It is a fairly new drug. However, it is the only thing I can pin the beginning of my problem to.
CommentCandice -- Doctors always sound so adamant, even when they don't have a clue. e.g., I'm sure no MD initially thought a diet drug could cause a fatal heart valve disorder. Or that Biaxin and Seldane combined could kill you. They only catch on after several well-publicized cases. Look at all the drugs that have been approved, only to be taken off the market. MD's change their minds (or stay clueless) all the time. Maybe the makers of Accutane have a registry for possible side effects of Accutane. Maybe an acne website would know of people with the same symptoms. I still have vaginal dryness, but no pain. These are probably all ideas you've thought of already. Good luck in your quest. Try not to let narrow-minded MD's bring you down; you have lots of support here. -- Alli
CommentInteresting about the Accutane. I didn't notice a connection between the two timewise, but it is definitely a possibility. Actually Roche does take it's cases like this semi-seriously. I read somewhere that there could be a link between Accuatane use and IBS. I have read here that many other women suffer with IBS also. Could just be coincidence since 1 in 5 women suffer from Irritable Bowel Syndrome. So I called the company and they got right back to me. They took all of my complaints, (probably just to protect themselves). I for one noticed a link between my Vestibulitis and monistat/yeast infection. Actually, I had been following a great doctors recommendations. I posted them in a previous post. I was BETTER/NORMAL for over six months. I seem to have had a relapse, and am going back to the doctor within the week. Perhaps it's because I wore tight clothes a few weeks ago, or used a scented soap at a friends house, but I am definitely suffering a again. i feel like an idiot posting my success story (for 6-8 months) and then having a relapse. It is very discourageing both for me and my boyfriend. We love each other very much, and want to get married, but we have never had a normal sex life. I feel like breaking up with him just so that he may enjoy the pleasures of a real sex life. I get so depressed sometimes at the lack of positive treatments. I will go see my doctor, and see what he has to say. Does anyone know about the surgery to remove the affected skin??? Is this bad/ good? Here is another possible cause for me... a few years ago, I dyed my hair a bunch of times rinsing it in the shower. My doctor says this is definitely a possible cause, any thoughts? Stephanie
CommentTo Stephanie: Hi, I'm sorry that you've had a relapse. According to the Dr. I went to for a diagnosis, every woman will Vulvodynia will have occasional relapses. I also dye my hair and rinse it in the shower, but I myself haven't had any problems with that. Of course I read on Dr. Weil's site that hair dye can cause cancer. Terriffic!! I hope you get some relief very soon.
CommentNow that we have a new guestbook could the format PLEASE be changed so that the newest entries appear first. I don't mind the scrolling down as there are shortcuts but it's waiting for the page to load that takes forever. It's not so bad now as it's a new book but after a couple of weeks it becomes a bit of a pain. Sorry for the whinge but I thought maybe it was something that could be kept in mind for future guestbooks and would make this site a bit more user-friendly.
CommentDoes anyone know of a good doctor who will treat vulvodynia in Michigan? I have been suffering from vulvodynia for several months now, and am desparate to find a good doctor. I have seen many doctors who can't help me (you know how that goes.) If you can recommend someone, would you please e-mail me back or post a message? My husband's e-mail address is listed above - we both use it. Thank you so much!! I am so glad I found this site and no longer feel like I am alone.
CommentMallory: regarding your plea to change the guestbook. Sorry but when I started the guestbooks a couple of years ago the software in use at that time presents entries sequentially from the oldest to the newest. Even as the books become longer, and if you are using a slow modem, it only takes 20 to 30 seconds to load up the largest guestbook. To get to the most recent posts at the end of a guestbook just hold the "Control" key and hit "End". The few seconds wait and a couple of key strokes will have to do for now. If you want more immediate interaction with others you should join the vulvodynia email lists or the vulvodynia chat room. For information on the email lists go to: http://www.vulvodynia.com/mail.htm To reach the vulvodynia chatroom go to: http://www.vulvodynia.com/chat.htm Thanks for your understanding and continued participation in the vulvodynia.com website. Howard I. Glazer Ph.D. vulvodynia.com website host
CommentHi Ladies This is my first time writing in the questbook. I have been dealing with this discomfort for over a year and a half. I have seen numerous doctors, and have been diagnosed with VV. I have gone through many, many treatments. I have tried Biofeedback, and it seems to have taken most of the pain away. However, there is still this dryness and irritation. Especially when I wear tight clothing. I am currently using vitamin E, but it does not seem to be helping all that much. The discomfort is most often on the left side, where I did have a blister at one time, and I am on Suppression medication for Herpes, even though the test results were inconclusive, as my Dr. sent over the specimen in an expired vial!! One thing after another.... I have alway had strange sensations in my vaginal area. It feels as though sometimes it "falls asleep". The tingling starts and then it wakes up again. A few years ago, the area would wake up and be just fine. But in the last year and a half, I had been treating myself for a yeast infection with Monistat, and then the pain really heated up. I went to see my dr. and it turned out the I had a bacterial infection all along. I was killing all of the yeast and creating more bacteria. I feel that I somehow changed the skin area around the vaginal opening with the Monistat cream and now I cannot get it back. Any suggestions? I would really like to be normal again.
CommentHi Ladies This is my first time writing in the questbook. I have been dealing with this discomfort for over a year and a half. I have seen numerous doctors, and have been diagnosed with VV. I have gone through many, many treatments. I have tried Biofeedback, and it seems to have taken most of the pain away. However, there is still this dryness and irritation. Especially when I wear tight clothing. I am currently using vitamin E, but it does not seem to be helping all that much. The discomfort is most often on the left side, where I did have a blister at one time, and I am on Suppression medication for Herpes, even though the test results were inconclusive, as my Dr. sent over the specimen in an expired vial!! One thing after another.... I have alway had strange sensations in my vaginal area. It feels as though sometimes it "falls asleep". The tingling starts and then it wakes up again. A few years ago, the area would wake up and be just fine. But in the last year and a half, I had been treating myself for a yeast infection with Monistat, and then the pain really heated up. I went to see my dr. and it turned out the I had a bacterial infection all along. I was killing all of the yeast and creating more bacteria. I feel that I somehow changed the skin area around the vaginal opening with the Monistat cream and now I cannot get it back. Any suggestions? I would really like to be normal again.
CommentHi, I've been suffering from vulvodynia for two years now. After getting very little help from the first two physicians consulted, I finally had to figure out for myself what was wrong with me - thank goodness for the internet! I've now been referred to Dr. Benson Horowitz, but have not yet made an appointment with him - partly because I have to travel a significant distance to see him and partly because I don't relish discussing my "problem" with a man. Up til now, I've seen only female physicians. I was so happy to discover this questbook yesterday - I've been in such despair recently and it helps to find I am by no means alone! I am 41 years old, mother of three, married 16 years. I have some degree of burning almost constantly. Its mostly on the left side on the labia and internally it feels like it extends up into my vagina along the left side. Physicians tell me there is no visible sign of inflamation in these areas. What often bothers me almost more than the burning, though, is the feeling that my left labia is swollen. This makes wearing pants, and sometimes just sitting, uncomfortable. I first noticed my symptoms about two years ago after a twelve hour car trip. I sometimes wonder if I caused some kind of nerve or circulatory damage by sitting in jeans for so long. I just remember at times during the trip having the sensation that my left labia had "fallen asleep" and I would have to shift position. I'm not positive that my problems began that day, or whether they were just very evident because of all the sitting. Like many of you, I've tried to think of any other possible causes in my diet, environment, etc. Reading through the questbooks has given me some new ideas to investigate as causes. I also plan to try some of the many home remedies suggested....since I suspect I'll have to wait awhile for my appointment with Dr. Horowitz. If anyone out there has been to see Dr. Horowitz and could tell me what to expect or maybe reassure me a bit, I'd appreciate It! Also, has anyone ever considered a possible link between this problem and the wearing of acrylic nails? The liquid that acrylic nail powder is mixed with is basically Crazy Glue which can't be good for you. I've recently stopped having my nails done to see if it has any effect and I wonder if anyone else has thought of this. I apologize if this topic has already been addressed - I haven't read through ALL the questbooks yet. Anyway, that's more than enough for today. I'm sorry that all of you share my pain, but thank you for being there!!!!
CommentHi I'm 25 and have vulvar vestibulitis for about 4 years but was diagnosed a year ago I have had only one intercourse in my life .Besides that I'm desperate depressed and my life is a big ruine I'm angry at myself that I did not make love before I developed v v.
CommentAs far as I remember I got it after vagistat to.
CommentIn response to Laura's entry on 8/14/00. I've been thinking all along that perhaps this problem is associated with soy or soy bi-products. No, I actually believe the problem with me is associated with soy. A year ago, I had no idea that soy was in soo many products. Some of the foods listed on that "diet" bother me, but there are others as well. I feel that anything with soy messes me up "down there". For example, I never knew that soy was used in body soaps. Certain soaps bother me, as well as foods. I don't know but I can't figure anything else out. I just know that if I avoid soy, I am fine. Even now, if I eat soy in moderation I am okay, but if I over do it, I'm awful. I've been really watching what I eat lately and I've been fine. I still have slight burning at times with urination but not as much as I used to. I'm no longer inflammed, itchy, or sore. I no longer feel like I have "chapped lips". Anyway, it has been helping me. I can't say it helps others, but hey it is worth a shot, after all else fails. I don't even have problems lately with my IBS. Who knows. All I know is that I no longer fear the pain of intercourse and I don't cry all the time. I no longer am stuck taking Prozac or soothing myself with Lidocaine. I feel pretty lucky lately. I just hope I stay this way for a long time. I'd like to hear more about what you think. I'm glad someone else is trying out this soy thing. I'd like to learn more about soy. I do know it is good for your body but I don't think it is good for mine.
CommentAs a follow-on to Jess's comments and my earlier posting -- for the last week I've been incredibly diligent about not eating foods with hydrogenated soybean oil and my pain has been substantially reduced. More just tenderness, than the burning, raw pain. Don't know if it really has anything to do with the soybean oil, but for now, I'm not touching it. (Also, now that I've read alot about it, it's horrible for your body anyway. One of the worst kind of fats you can eat. So am hoping my arteries will benefit too.)
CommentThis is the first time that i've been here so forgive me for asking stupid questions.all of the stuff that i've been reading sounds like some symptons that i have but i haven't been diagnosed yet.the itching,burning,constant yeast infections,bladder infections.i've been to 2 different doctors and have expressed my concerns and all they do is give me antibiotics.i only learned of this site because girl at work said her sister has the exact same problems.I have gained 30lbs in the last 6 months or so and all the doctor says is to keep excercise more......4 days a week isn't enough???????????? what else can i do to have the dr check further into this???? e-mail with advise
CommentIn response to Kathy, 8/19/00. I'm glad that someone else out there is trying to cut out the soy. I hope that you continue to write in the guestbook, because it good that someone else is experimenting with soy limitation. I will continue to be interested in how this works for you. I know I've been doing so well (after everything else I tried failed me). Maybe, soy eventually builds up in the system (just a guess) and creates reactions in some people. I know at first I couldn't eat anything with soy, but lately I've been slowly re-introducing it into my diet again. However, very small amounts. I've been doing extremely well. I can't wait to hear how you progress. Maybe, this may have something to do with Vulvodynia. I'm glad that you responded. Good luck, and I hope that cutting out soy works for you Kathy.
CommentOne last thing Kathy! When I first started avoiding soy, my vulvodynia got a lot worse before it got better. So, don't give up if the vulvodynia gets a lot worse before you feel better. It will take some time just with anything.
CommentDoes anyone know of any doctors in Utah who have experience treating this awful problem? I have been in some degree of pain nearly every day for 5-1/2 months now. It started with a yeast and bacterial infection (at the same time) where the pain didn't go away after the infection did. I've since been told twice more that I had yeast, after being told 3 times that I had NO infection. My current gyn has heard of vulvodynia, but says he doesn't think I have it (maybe because oddly enough sex isn't painful--I just have pain to some degree virtually every day). I am sick of treatments that don't help--the latest is boric acid capsules since I did test positive for yeast, and I've gotten worse using them. The only cream I've found helpful is called Panthoderm, which cools the skin off for a couple of hours or so. Feel free to e-mail me with any suggestions or just to vent about this.
CommentTo all who avoid SOY--- Is there a special place to look on the internet about foods/products without it? Or have you guys just been reading labels? This "thing" we have is horrible, and I have been off birth control pills for 2 months now, just to see if it would help any, I have noticed some slight improvement, but not 100% i now have yeast infection from Amoxil 875mg 2x day for sinus infection. Yuck! You can't even bee sick without something else horrible happening! I have also read somewhere in one of these archives that Evening Primrose Oil helps. I take it every so often ,and it seems to help somewhat. Anyhow, good luck with whatever you try, and if it is something new, please write it here so we can see if it will work for any of us. Good luck!!
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CommentResponding to the soy conversation, I too, have read a lot about it being an irritant. My question is, like someone else before me, how are you ladies avoiding it to the point that you can actually make the comparison? I see soy on every label I read. Is there a website (or any resource) that compares amounts of soy in various products? (cereal, for example) Thanks for your help. I wrote earlier that 20/20 did a show about the mal-effects of soy earlier this summer. It was really, really interesting. They might have references on their web site.
CommentI am 21 years old and I have had Vulvar Vestibulitis for about a year and a half. I got it after having Bacterial Vaginosis multiple times. I have been on Amitriptyline off and on. The longest period of time I was on it I found some relief, but it caused me to have absoulutly no sex drive so I am off it now. The only thing I have found that has given me almost pain free sex is extra strenth Ambesol. I know that sounds weird but it contains 20% Benzocaine which when applied to the painful area, numbs it for about 10 to 15 minutes. If anyone has any other ideas for longer lasting relief please let me know. My husband and I are determined to find a cure for this.
CommentI would like help in finding a treatment for vulvodynia for me. I was diagnosed in April and I have not been able to find relief.
CommentTo the last 2 entries: Get a prescription for Xylocaine from your doctor. You can use it as much as you want to numb the area. I am sure that it would be stronger than anbesol. Also, my doctor is trying something new for me. It is a cream made from Elavil and a muscle relaxer. I have just now started on it, so I don't have anything definite to report as yet. I will keep you informed.
CommentRegarding the elimination of soy--at this point, I have been relying on food labels to minimize soy in my diet, which is frustrating. Many of them say "contains one of the following: hydrogenated soybean oil, cottenseed oil or rapeseed oil." (I don't understand how food producers get away with that--I thought the idea behind food labeling was to identify what's in the product!!) Anyway, I've been avoiding ANYTHING that even mentions soybean oil--whether it's listed as an ingredient or a possible ingredient. It's really hard -- pretty much means you eliminate any commercially baked foods, other than expensive artisan breads, gourmet cookies, etc. (The good news, however, is that unlike the low-oxalate diet, this approach does let you have chocolate!)
CommentI had an entry in the last guestbook and I wanted to update everyone on how I am feeling. First of all I too took Accutane when I was 17 years old for acne. I am 25 years old now and my main problems for the past several years have been recurrent yeast infections, which finally seem to have gone away. Along with the yeast infections I have always had vulvar irritation. I am unable to wear tampons and sexual intercourse is painful. I was put on birth control pills at the age of 17 to regulate my period, but was taken off several months ago by the doctor. She thought this could be the cause of my yeast infections. Today I go back to the gyn doctor and I still have vulvar redness and irritation. Also last time my gyn dr checked my hormone levels and my prolactin level is elevated. I am getting very frustrated with the irritation and would like to know anyone who has had surgery or any other suggestions, please feel free to e-mail me.
CommentWell, it sure looks like there are a lot of us out there. Since I am new to the site, I hope that you will indulge me in asking a few questions--I have so many things going on "down there" that I really don't know what is symptomatic, or stress related over the concern of the whole thing. So, my list as follows: back pain, bruised-feeling sit bones, burning near and around vaginal opening--sometimes it feels like I've been wearing tight jeans too long (again a bruised feeling), burning after urination, but not all the time, rectal pain and itching,"skin crawling" feeling around vaginal opening, vaginal itching (sometimes severe like a yeast infection, but there isn't any kurd-like discharge,painful entry with intercourse--that can continue on throughout, numb/tingling in the clitoral region and vulvar region, sore pubic bone and occasionally back pain. Whew. I know that we are none of us physicians, but if anyone has combinations and or all of these, please write to me. I've had some luck with Dr's (mostly women) who have at least heard of this disease and are interested in what I have to say, but trying to pin-point symptoms that aren't always around, or only one or more are present. I've read most of these postings in all of the books (extensive!) and there are too many similarities, so I'm trying to narrow it down. Recently the discussion has been about soy--I was a strict vegetarian for 6 years and ate a great amount of soy burgers, granules, etc.. Additionally, I took an enormous amount of antibiotics when my wisdom teeth were infected--I waited too long to have them out and then tried to put it off, and off, and off...In any case, I hope that someone with some insight as to what to tell Dr's is reading this--any help trying to end this would be greatly appreciated. Take care, all of you.
CommentI would like to ask whether any of you have PCOS (Polycystic Ovarian Syndrome) as well as Vulvar Vestibulitis. I have had both for at least 10 years. Just wondering if there is some connection between the two diseases. How about Lichen Sclerosus? When I had a vulvar biopsy several years ago, I was diagnosed with that, but my current GYN believes I have Vulvar Vestibulitis. Has anyone noticed an increase in pain over time? When I had my first intercourse at 19, it hurt, but not like it does now (age 27)! Well, good luck everyone. I'm waiting for the day when one of the hundreds of remedies I try will cure my symptoms so I can write about it here!
CommentI am so grateful for your website. Doctor's so far have not diagnosed me correctly. I have tried steriod creams on and off for about two years! I have had this condition in the past. Once nystatin worked and once betamethasone worked. Now I have been on hydrocortisone 2.5 and it works great, but as soon as I stop. It flares up again. I am know only going to try an anti-infammatory that does not contain steriods. I got the names of some off of your list. For this I am grateful. Thank you
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Commenthey there--- I have been trying to get my girlfriend to write to this for a while and she HATES the web. Regardless, I want to help her uncover exactly what is happening to her body. She thinks it is Vulvodynia, but we are unclear of the exact symptoms. She has pain on the outside, like rugburn she says, in the whole area, and aches like cramps on the inside. Sex hurts, peeing hurts, and it flares up after any meal regardless of ingredients. We have been trying to stick to the low-oxalate diet and it has had some good results, but she still has days where she can't walk. I was just reading of the "no-soy-anything" approach and it makes sense. Any other suggestions? Also, we are in San Francisco... are there any specialists, support groups, resources, etc. in the area that anyone can pass on? Thanks alot and good luck to all!!
CommentI don't think this sounds like such a rare disease. I have had the recurring yeast infections, bladder infections, pelvic pain, back pain and too many others to mention for 5 years now. I took info form vulvodynia.com to my Dr. (the 3rd one by the way) and she said she had heard of this disease but it didn't occur to her that this could be what was wrong with me. This was after ruling out everything from diabetes to hiv. It's not bad enough to be in pain but having to be humiliated and made to feel like you are imaging it all is a bit much to say the least. I have found some relief by not eating yogurt and whole wheat bread, which the Dr.s feel is the cure for yeast infections. I just couldn't eat them any more. This might just be a fluke. I still have pressure and inner pain but the itching and vulvular pain is gone. I am afraid I am just exhibiting different symptoms. I live on tylenol and use a heating pad quite often. I can't take alot of meds because of migraines. My doc wants me to go to a infectious disease doctor in another state. I am up to my arm pits in Dr. bills already without getting any better. I really think it helps to have a good support group. My husband is great and I hope to talk more online also. I know everyone is going to freak on this subject but what about hysterectomy. Is there total relief even after going this far? I also have ovarian cysts on both ovaries, a fibroid tumor and they think the beginning stages of endometriosis. I am only 32, but how much has to be wrong with a person before the insurance company will ok a surgery such as this? Good luck everyone. I hope more Doctors will take note of our suffering.
CommentHi Tammy: Unfortunately my hysterectomy many years ago had no effect on my Vulvodynia whatsoever. I had Vulvodynia before the surgery and I still have it. So, if I were you, I wouldn't rush into surgery unless it's absolutely necessary. I hope you find some relief soon.
CommentHi again, I am sandra,I am 30 -31 in sept. I have just lost another job because of this sh-t......... I am not to happy, we are about to lose our house ,cars and what ever else they want to take,,..,.,. we can't get any help and i have been turned down for disability for the 4 time. they say that this sh-t is not disabaling,,,,,,,BOY WHAT I WOULD GIVE TO SEE THEM LIVE WITH THIS and knowing that there is no cure.......this is just not right that we have to sit back and watch our lives get trashed because of this. and we can't do a thing about it....I AM REALY STARTING TO HATE MY LIFE....BUT I HAVE TWO KIDS THAT I HAVE TO LIVE FOR. FOR WHAT LIFE I HAVE, CAN'T BIKE RIDE, SWIM,NOTHING I AM ONE BORING MOTHER,,, WE CAN'T EVEN GO ON TRIPS CAUSE I AM AFRAID I WILL FLARE UP THIS SUCKS
CommentTo Eric (and his Web-hating girlfriend...) You can find a ton vulvodynia resources at http://www.edae.gr/vulvodynia.html which might help you learn about symptoms. But there's a good, concise description of the broad range of symptoms at http://www.vulvarpainfoundation.org/vpfabout.htm, the site for the Vulvar Pain Foundation. (It's a page that brought me huge relief, as it was the first place I found that EXACTLY described the wierd assortment of symptoms I had. At last I was able to put a name to the puzzling condition.) FYI, this group also has support groups, organized by member volunteers that might be of help to you. On side note: speaking as a very lucky woman with an incredibly supportive partner who participates with me in dealing with this problem -- I hope you know that your support and initiative with this is probably more helpful to your girlfriend than you can possibly imagine...
Comment8/25/00 Hi Ladies, I have suffered vulvodynia for eight years. I am from Spain, here no doctor knows anything, neither they investigate. I want to thank to all of you because I have learnt a lot reading the guestbook. I would like to ask you a favor, when you write the medicines´ name that you have, please, write the ingredients that they have. These medicines are sold with other names in other countries, in this way we will be able to tell our doctors the medicines that we have to take. For instance: amitriptyline it is called Elavil in USA, in Spain it is called Tryptizol. Estradiol it is called Estrace in USA, in Spain it is called Ovestinón. This will be very helpful for the women who suffer vulvodynia and who don´t live in USA. Marcy, Guestbook nº 13, 8/11/00 What ingredient has Neurotin got?. Has it got Gabapentine? Thanks to all of you, best wishes from Spain.
CommentI continue to believe that soy could be the culprit. I do read labels, and that is the only way I know if soy or soy bi-products are in a product. As I continue to think about soy allergies or soy sensitivities, I reflect back on, you won't believe this, one of my dogs (everyone will probably get upset with what I'm about to say). I know, people are not dogs, but just stay with me for one second. I know that dogs, when allergic to soy can develop hair and skincoat problems. This sounds really stupid, I know, but I remember my dog being very itchy and miserable. The vet said to change his diet. NO soy! Well, long story short, my dog got better. I've heard that food sensitivities, allergies, can present themselves at any time, especially when the body is continually introduced to a substance (that it doesn't like) over time. Everyone is different and maybe not everyone is allergic or sensitive to soy. I just know that the vet also suggested that I put my dog on a "homemade diet". How much processed food do we eat? A lot! I know I'm definitely not a doctor, and I don't have a cure for vulvodynia. I just think that doctors are missing something. I wish there would be more research into soy and if it could cause symptoms of vulvodynia. Who knows what we would find out? Yeah, soy is supposed to be good for our bodies, but what happens if our bodies don't recognize soy as a good thing? I just know that avoiding soy for me works. I really don't know what I'd do without this site. This web site is like a breath of fresh air because it keeps me thinking, learning, and reaching out for hope. I am no longer alone nor am I as depressed as I used to be. I am finally able to reach out for new ideas and helpful hints. Thank you for allowing me to ponder my thoughts and giving me new ideas and input.
CommentFor those of you out there who believe the problem is soy could you please give us your symptoms? The reason I ask is so many of us have different symptoms which leads me to believe there are many causes. If we could know exact symptoms it would be easier to know which cures would work best for us. Thankyou all for your input and support.
CommentDoes anyone have any suggestion for types or brands of underwear that don't irritate VV? I know to go without at home, but can't bring myself to do so at work or other public places. I tried cutting the elastic off the legs of my cotton hi-cut briefs, but that just makes them ride up more. I've even started eyeing my husband's jockey shorts! (They look pretty comfortable.) But I'd feel ridiculous wearing them, I think. Also, has anyone noticed that the pain gets better (or goes away) while lying on your stomach? This seems to transfer it to my back, though. What a strange and depressing condition this is! I feel like I have less and less of a life every day. Someone said they were turned down for Disability because of vulvodynia. I've been told you should emphasize DEPRESSION and ANXIETY caused by the condition--as long as you don't mind being labeled "mental." (Geez, who wouldn't be, dealing with this?) I may go this route myself, as sitting at a desk is becoming torture. I also have frequent urination and burning. I keep telling the dr. the pain is on the OUTSIDE, but they just give me more antibiotics, despite the fact that an infection rarely shows up. Now they want to do a urethral dilation. I can only imagine what kind of trauma that would cause. The dr's reasoning is: "Well, sometimes it seems to help." Save me from uninformed doctors!
CommentDoes anyone know of a good kegel exerciser? I have seen a couple of different types in catalogs but they don't really explain what the differences are. Has anyone tried any of these products?
CommentCathy, you wrote in on July27/00 asking me about the use of 'Apple Cider Vinegar'. I am sorry it has taken this long for me to reply but I was away. Yes I use it topically, just like Callie in Florida who found 'Borrough's Solution' helpful and laid in the tub and simply poured it on from a small container. I also use 'Apple Cider Vinegar' in my bath as it helps adjust the PH balance of your skin. Make sure this is the real uncommercial vinegar with the 'Mother' still in it as it is the real thing. You can purchase it at health food stores. I am still using it and as well I take 1 tsp. in a glass of water three times a day. I am so thankful I found that old book with this information although I now notice quite often apple cider vinegar is mentioned to do with irritation, inflamation and itching in articles that I have read. I find that more and more articles on why are drugs not working any more. I honestly think we have to go back to natural remedies. After all that was the basis for all medicinal remedies at one time until they began to make all these synthetic and chemical so-called cure-alls. Anyway I hope you have had the success I did, I now only have to use it topically occasionally. but I still faithfully take one tsp. in water three times a day so perhaps that also helps keep it at bay. Sincerely, Sorry I took so long to get back to you, OLIVIA
CommentFor six LONG years I have suffered with vulvodynia(took me almost a year just to get diagnosed most doctors just thought that I had a bad yeast infection) . I get some relief from taking Elavil but not nearly enough. I am a single mother of a beautiful daughter and I feel like her life is so limited by how awful I feel most of the time. I can't do the normal everday things with her that I used to...sometimes just walking with her is enough to really aggravate my symptoms. I hate this so much. It does help to know that I am not alone. Thank you so much for sharing your stories...it means so much! I have had a difficult time of finding a doctor in my state that specializes in treating women with vulvodynia . I live in Maine and very few physicians have heard of this condition. Ugh...why is there no cure for this it is so depressing. I am trying to hold on to my job but just sitting at my desk full-time is beginning to be very painful. I need help!!!!!
CommentHello ladies, I have not posted for quite some time. As stated before I am totally disabled from IC and Vv and now I have Sjogren's. I was approved for Soc. Sec. after being denied twice and was about to appear before an ALJ when my file was intercepted by a reviewer who immediately approved my disability and even back dated it to when I began chemotherapy (DMSO instillations) for the IC. I stopped (was fired. I am a NURSE!!) working in 11/98 but they backdated my disability to 6/98 as I could only work part time after the DMSO. I can't remember where I saw the following web site listed, if it was this Vv group or the other one (VPD), but I recommend everyone check this out. It is called INVISIBLE DISABILITIES. It is wonderful! I never even thought to do a web search for this. It is run by a wonderful woman named Sherri. She deals with all the comments (well meaning) I'm sure we're all tired of hearing, such as,"You don't look sick," or "Gee, you look great," etc. Check out her web site as it is very comforting and refreshing. No one knows how much we suffer unless they read all the guestbook entries and join the egroup. I do have a suggestion: GET EVERYONE'S PERMISSION AND PUT ALL GUESTBOOK ENTRIES INTO BOOK FORM AND DUMP IT ON CONGRESS'S LAP. I have never read so much suffering in all my life. The guestbooks are the best documentation of how Vv destroys lives, families, relationships and careers. Maybe then Vv will get attention to get more funding for research and better treatment options. In our country our gov't approves which diseases get attention and which don't. The INVISIBLE DISABILITIES web page is: www.invisibledisabilities.com. I hope this site helps some of you.
CommentHello ladies, I have not posted for quite some time. As stated before I am totally disabled from IC and Vv and now I have Sjogren's. I was approved for Soc. Sec. after being denied twice and was about to appear before an ALJ when my file was intercepted by a reviewer who immediately approved my disability and even back dated it to when I began chemotherapy (DMSO instillations) for the IC. I stopped (was fired. I am a NURSE!!) working in 11/98 but they backdated my disability to 6/98 as I could only work part time after the DMSO. I can't remember where I saw the following web site listed, if it was this Vv group or the other one (VPD), but I recommend everyone check this out. It is called INVISIBLE DISABILITIES. It is wonderful! I never even thought to do a web search for this. It is run by a wonderful woman named Sherri. She deals with all the comments (well meaning) I'm sure we're all tired of hearing, such as,"You don't look sick," or "Gee, you look great," etc. Check out her web site as it is very comforting and refreshing. No one knows how much we suffer unless they read all the guestbook entries and join the egroup. I do have a suggestion: GET EVERYONE'S PERMISSION AND PUT ALL GUESTBOOK ENTRIES INTO BOOK FORM AND DUMP IT ON CONGRESS'S LAP. I have never read so much suffering in all my life. The guestbooks are the best documentation of how Vv destroys lives, families, relationships and careers. Maybe then Vv will get attention to get more funding for research and better treatment options. In our country our gov't approves which diseases get attention and which don't. The INVISIBLE DISABILITIES web page is: www.invisibledisabilities.com. I hope this site helps some of you.
CommentI was first diagnosed with endometriosis in 1991. Never had painful sex until after vaginally delivered my daughter in June of 1998. Now, all the time. Also chronic bacterial vaginosis and yeast infections. Nothing helps. Redness, itchiness, pain. Dr. called it "chronic pain syndrome". Had laparoscopy in May, 2000--StageII/III endo--cul-de-sac totally obliterated. Pain has improved, but even taking alleve, cbcps and celebrex, have pain/problems with sex. And the infections are still there
CommentTo Mª Teresa in Spain: yes, the generic name for Neurontin is "gabapentin."
CommentHaven't put anything into the guestbook for a while now, so I thought I would give an update. I began the problems with VV a little over two years ago. Thru the use of Elavil and no jeans, sex, etc., I'm able to pretty much live a normal life (but really how normal is it, when I can't do these two normal things). Well, anyway, I just sort of deal w/vulvar pain all the time. You know the scary part of this? You get so used to it, that you don't even realize when something else is happening. I took vacation in early July of this year. I had been hurting more than usual for a few days, but that day flying and later being in scorching heat, made the pain much worse. I just thought it was a vulvodynia flareup. A few hours after being off the plane, with a great deal of pain, I used the restroom again. When I wiped, there was blood on the tissue. I knew it was a bladder infection (because there was no way it could be coming from the uterus, as I've had a hysterectomy). Went to ER (what a fun way to start vacation), and got checked and got antibiotic and Diflucan. After completing medication, I saw my doctor at home (by then I was back from vacation). My urine tested fine. Well a few weeks later, I noticed some pain and an unpleasant odor "down there". Went back to doctor - another bladder infection. I had been taking good care of myself, and couldn't believe this was happening again. So back on antibiotics again and Diflucan. See, one of the things I find the most frustating about this is you can be sicke w/a bladder infection and not even know it because you're used to having pain. I've decided to keep a good check on this and not let this happen again. Oh, one other thing, when you do a urine specimen at the doctor, be sure and tell them to send it off to be cultured. Many times the "dip test" that they do in the doctor's office won't show what's really going on like a urine culture will. Well, here's to better days for us all. God bless you all, ladies
CommentHi Ladies, In response to the soy comments ... I think we may have a problem with soy becasue it is high in yeast ... please go to the Karen Tripp web page - I'm not sure of the exact address but if you search for "Karen Tripp" it will come up - She cured herself of "candida" by eliminating all yeast and carbohydrate type products ... We may have a problem with an overgrowth of yeast in our intestines which is causing the vvd. Search for "candida" and read all the web pages ... I think you will find them interesting to our disease... I have started the Candida diet and I am starting to feel much improved (And i have the classic case of VVD) ... I have ordered some anti fungal herbs called SF 722 (It's called something like that - you'll see the name on Karen Tripps's and other candida web pages) and some acidophilus. I will begin taking that soon and for the next 30 days ... I'm probably not explaining this very well ... but check out the web pages.... by the way I also took acutane, 15 years with anti-biotics and childhood bladder problems... Good Luck all... DD
CommentHello Everyone. Back in one of the previous guestbooks I told all of you that after seeing Dr. Sobel in Michigan I started feeling normal again. He put me on 50mg of Elavil and Diflucan once a week. I have felt completely normal for the past 3 months and until recently did not have any pain. I am now starting to feel the pain again. It started to hurt after urination in two spots where I have it the worst and then last night it started hurting all over again. The only thing I can think of that I did different is start taking Slim Fast due to the weight the Elavil is putting on me. Could this product have Soy in it? I read the label but nowhere did it mention Soy and then I remembered some of you saying that it isn't always listed in the ingredients. Does anyone out there happen to know if this is one of the ingredients of Slim Fast? Anyway, I have stopped taking it and am waiting to see if there is any improvement. The only other thing that might be attibuted to this is that I started drinking pop again. For awhile there I quit drinking all pop except Sprite and only drank juice. So I'm back to that as well. It is just so depressing having this pain back again. I have felt so wonderful these past few months. I was able to play softball again and to work out at the gym without any pain. I don't know if I can go through this again.
CommentTo Kathy, 8/28/00 Thank you, you have helped me a lot.
CommentTo Heather I was afraid of weight gain so I took myself off Elavil pills. I am treating through U of M and they prescribed a cream made up of Elavil and a muscle relaxer. It has made a difference for me and no weight gain. I am only on a very small amount and was told I could use it more often. I will keep you up to date. They use a pharmacy in Southfield that creates this medicine for them.
CommentMy story is the same as the many I have read on this guest book I am sad to say. I have had vestibulitis for 12 years, and was correctly diagnosed after 8 of those years in 5 minutes by a nurs practitioner. I think I saw 6 different doctors,tried several antifungals, and became desperate. I have never had an enjoyable sexual experience--guess I don't know what's so great about it- I suppose thats good, or I would be even more sad. This problem did not cause my divorce, but was certainly a factor- but I do have 2 wonderful children to be thankful for--they were very worth the pain I went through to get pregnant! My symptomsw started immediately following a course of antibiotics for a sinus/ear infection (ceclor). I came to find that Monistat made me worse-you all know the rest of the story. Has anyone had good results with calcium citrate, guafenisien, or glucosamine. When I first started them I was symptom free for a week (WOW), but now I seem to be getting worse and can't tell what is what or what helps and what doesn't. Any ideas how to meet sensitve caring men who don't like intercourse (YAH RIGHT). Please help. I am so glad I found this website-guess it's not all in my head, cause "It sure looks normal down there." Thanks,Lisa
CommentHi there, I'm 35 and my VV symptoms developed after I had a hysterectomy, maybe due to drastic lowering of estrogen levels. I have tiny bumps around the vestibula and I also have very low abdominal pain that seems associated with the vaginal pain which is inside my vagina and around the entrance. Does anyone else have these symptoms? And any suggestions which might help. Thanks
CommentHi, I forgot to say that filter coffee seems to make my symptoms worse, anybody else the same? Arabella
CommentTo all of you just beginning the research.... This is a wonderful site, it was where I "began" 7 months ago. I have learned much, and one thing I would like to say is that you will not find succinct, comprehensive information here on the guestbooks. One thing I did was to join the Vulvar Pain Foundation. I ordered every one of their back issues of newsletters, and this helped me tremendously. They have included, in fact, Dr. Galzer's method and story in their literature.. You can visit their website at vulvarpainfoundation.org Their website is nice, but the REAL information is in the newsletters.I was tested by their research facility and found that I have abnormal amounts of oxalate in my system.(ANYTHING can set this off, trauma, surgery, antibiotics, or nothing in particular...) I have begun a diet avoiding the high oxalate foods, and taking simple calcium supplements TIMED to my own personal test results.(I had tried on my "own" to take the supplements with no effect.). After the test cost there is no financial output here, no one making any money....just helping the women. Another thing I did was to find out about pelvic floor dyfunction, and although I beleive Dr. Glazer is on to a solution for many with the relaxation/biofeedback, there are others out there who do more with physical therapy and INTERNAL massage that is extremely helpful for those with nerve damage or entrapment. I am seeing a wonderful PT who is focused on the mechanical component of my pain, and we are making real strides. Please remember, there are MANY causes, and many things to try. Be very careful about long term topical steroid use, its a first choice for many dr.s and can be devastating. My case seems to be two fold, and I have had my bowel tested and have found exessive glabrata yeast, so may be THREEfold. What works for one may not work for another. I was one who would try anything I read here in desperation. Be careful about trying someone elses cure. And remember that those who are trying to help have their own prejudices. My physical therapist is leery of the diet and supplements I am taking. I talked to Dr. Solomons of the VPF's pain project, and he is doubtful about the PT in my case, because of the lab results. These people are experts on their particular interest or field, and have a harder time seeing the other components, although they can help in their expertice. Get some concrete tests done. Don't "wonder" if you have abnormal oxalates, get tested. Don't' wonder" if you have pelvic floor dysfunction, find out who is best and closest to you who specializes in PF inujry or dysfunction. Ask you gyn if they know what glabrata yeast looks like, and if their microscopes are powerful enough to see them. Ask your gyn to take a look under that big magnifing mirror to see if you have fine tears or papercuts in your skin, Estrace cream could help you. Chart your pain, is it cyclical? This is a big clue and can define your diagnosis as well. I am still in pain, although something is working, I actually had sex with my husband for the first time in many months, and am not regretting it for increased pain. My heart goes out to you all. Don't give up. collect information, you can find out TONS in one spot by joining the VPF. Hope this helps some of you out there. C
CommentI have just read the entry by "C" regarding the helpful newsletters and do concur that they are very good resources. My question to "C" is, are you a sufferer of VVD or generalized vulvodynia? I have no pain involving the vaginal opening, just general burning, stinging and itching mostly wherever there is pubic hair. I have wondered how the diet would be of benefit to me. When we post to this site it would be very helpful if we were more specific about the type of symptoms we are experiencing. I check this site almost everyday and it keeps me feeling somewhat positive that all of us are contributing and offering suggestions. Thanks, Jean
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CommentIn response to Debby 8/29/00, thank you for bringinig this up again, I know that for myself yeast was the primary triggering factor. I have/had VVS, I had pain at the base of the opening of the vagina and burning up the insides of the labia. I now only have mild discomfort along one side of my labia. I have been yeast free and sugar free along with antifungals and antiparasitic drugs for 13 months and can now enjoy sex with my husband. I keep hearing over and over on this site about yeast infections, antibiotic use, bacterial vaginosis and endometriosis and interstitial cystitis all connected with this disease. I had all but the last, although I did have urgency when the VVS was at its worse. I have written before about the doctor I see in Michigan that treats yeast related illnesses. He treats all these problems because he believes and I do to that they all stem from yeast and parasites. I'm glad to hear another entry talk about cleaning up our diets. Get rid of the processed food, it's making us all sick! When I can collect the research on these other parasites, I will be back to share it. Meantime take care all of you and may God touch those of you with young children, you are still a great Mom with a lot to offer your kids. And they love you no matter what.
CommentFor Jean, I have general vulvodynia, with 24/7 pain. My pain began with burning and stinging and now seems more sore and bruised than anything. I have zero problems internally. I can use tampons, etc, and have no lubrication problems whatsoever. My tissue appears perfectly normal. No redness, or sores, now, but at the onset I did have slight redness and a couple of "almost" sores. One of the most interesting things I had ever read in one of the VPF newsletters was that of accounts of women who have had to have their bladders removed, for whatever reason, and their vulvar tissue STILL experienced the burning and stinging pain. So for some, the mechanism is obviously internal, not having to do with urine on the skin. I too check this site frequently, and the most disheartening thiing is that it seems like lots of women here are stabbing in the dark. I wish somebody would have written the post I just did when I first began looking how to help myself. Another thing I would like to mention is that there is a wonderful support group called VPD (Vulvar Pain Disorders) at egroups.com that you can join.. There are some very savvy, educated and experienced women ther ready to answer any question and provide emotional support. I urge you to check it out. C C
CommentC and Jean, I agree with everything you both said. When I originally posted on this site, I tried to be very specific about my symptoms, so that my suggestions would hopefully only be heeded by women who seem to be in the same boat. Vulvodynia is EXTREMELY broad. It is necessary to be more specific when you are recommending treatments. I had posted before that I had responded well to antibiotics, specifically Augmentin and Doxicycline. I was miraculously better during the course of meds, just to become horrible after stopping. I finally went over a month ago to Dr. Attila Toth in NYC to get an I.V. of antibiotics. I feel much better. Previously I could not stand to have my vulva stimulated digitally, and now it is no problem. I am very hopeful that I will continue to stay well, because previously I was sick again within a few days of stopping antibiotics. It has been well over two weeks now. My symptoms had been: change in discharge, change in odor, intense redness and inflammation at the opening of the vagina on the vulva plus some redness throughout. Originally felt like itching and pain, the 4 years into it the itching subsided. The pain felt like rawness with less elasticity. Sometimes I felt like I had cut glass there or acid running accross my vulva. I alsi at times had burning pain on my skin, especially my thighs. I will keep you up to date on my progress. Jennifer
CommentOne more response, mostly for Jennifer, Yes it is so broad, so many symptoms, so many causes, so little comprehensively written. I want to just make one more point about the oxalate theory: Those who were helped or cured by this method, DID NOT ALL HAVE THE SAME SYMPTOMS. Every BODY responds differently. Some had itching, others severe redness, others normal looking skin, others open sores. You cannot make your own diagnosis by comparing symptoms. Seems like you should be able to, but it is too simplistic to do this The worst thing any of us can do is to hide this problem, this horrible pain. Too embarrassed to say vulvodynia? Say "pelvic floor pain" use the word chronic, too. For the sake of all those who come after us, for our daughters, do not pretend there is nothing wrong. To do that hurts us all. C
CommentAlthough I agree it is dangerous to self diagnose. I went through 20 doctors who did not believe it could be a bacterial infection, when I strongly believed it. I was sick over 6 years before I found a GYN and a rheumotologist who agreed with me, but even they did not know what to do. How much meds? They are the ones who helped encourage me to see Toth. The problem is the vulvodynia community of doctors and specialists are of the mind that it is NOT and ongoing bacterial infection. When I have posted on this site before, I have received emails from women who seem upset I would even suggest it. I have also received mail from women that completely agree. Most of the women I talked to who agree have most or all of my symptoms, started the symptoms with a new sex partner, and many have found that certain antibiotics "cure" them only to have them feel sicker after a few days after stopping, then within a week or so the pain levels off again. Many interpret this as the antibiotics not working or leaving you sicker. I argue that the antibiotics were WORKING. That you feel sick AFTERWARDS because the meds were not in high enough doses or not for long enough. Remeber it is important to take antibiotics in their full prescribed course to kill off all the bad bacteria. I think the few times doctors prescribe for our condition it is woefully undermedicating us. I primarily post this for the women that strongly feel that theirs is infectious. So, if they would like they can contact me and I will tell them the whole story, and all of the treatments I tried, because I know they are consistantly hitting doctors that say it is not an infection, they keep dumping drugs into and onto their bodies that are not working, and no one is listening. I will listen.
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CommentI went to Boston to see Some Dr's who have knowledge about vulvodynia They put me on premarin cream, testostorone cream, acidophilous, L- Arginie and lidocaine cream. I recommend these dr's to anyone. Once again, I thank Tonya who has given me the the dr's name. Anyone who would like to go see them email me and I will give you their info. They are out of Boston, MA. It has been since May that I have been using the Testostorone & premarian cream. I stoped using the other meds like after a month. I use the testostorone cream for sex and it really helps. The dr also had me get off the pill cause my testostorone levels were low. I have not had them checked yet, but I believe that the pill has caused me to have these problems. I was on it for a long while for regulating my periods, then got off of it and 6 months later I had this pain. Has anyone else tried these creams? Vagisil lubricant also helps for the pain.
CommentI thought Jennifer's comments about this possibly being a bacterial infection were interesting, because that was what I originally thought when I first visited a dr. for this condition. There is a theory about interstitial cysitis also being an infection with an as-yet unidentified or hard-to-culture bacteria. However, there is also a counter-theory that, because antibiotics have an anti-inflammatory effect, that is why some people feel better taking them, only to relapse when they are discontinued. I have also wondered if vulvodynia might some kind of virus that doctors are not aware of yet. Some of us have discovered that yeast exacerbates our symptoms, which contradicts taking antibiotics. I have also heard that having TOO MANY lactobacillus--i.e., "good bacteria"--can cause symptoms of an infection. Again, antibiotics might help this by reducing the number of these, but might leave the person vulnerable to yeast or another bacteria. I'm afraid I'm raising more questions than I'm answering, but I'm glad to see people discussing various theories, because sharing what we've learned can be very helpful. (Keeping in mind that, as someone said, not everything will work for everyone.)
CommentTo the question asked on 8/26/00. At my worst, my symptoms were like those described in the guestbooks. When I first noticed my symptoms, I was red, raw, itchy, and had intense swelling down there. When I had to urinate it was like pouring salt into paper cuts. I thought I had a very bad "yeast infection". I treated myself and had no relief. I saw so many doctors and all of them gave me tests, and gave me advice, but no one could tell me what was wrong. I had one doctor ask me if I had been raped (bless her heart, but I hadn't). Anyway, a lot of doctors thought that I was having psychological problems, but I wasn't (no, I was, because I didn't know what was wrong with me). I felt horrible because I was having a hard time mentally, but at the same time my doctor wanted to refer me to a psychologist, yet my career is psychology. Funny isn't it? Anyway, I know myself mentally. I knew that wasn't the problem. Thankfully, I had one doctor who told me what was wrong, vulvodynia. I feel bad because I think soy is the culprit. It does seem too simple. However, if I had yeast overgrowth, wouldn't it show up? I've been checked so many times for yeast and bacteria, but there is nothing. I know everyone is different. I would still like to know if anyone has been feeling better by eliminating soy? I am so interested because this is the only thing that has been making me feel "normal" again. I know it is hard, and sometimes labels are misleading. I've been just eating basic foods. So far, I've been doing extremely well. I just wanted to hear your comments and address the question from 8/26/00. If in the next year, this soy thing doesn't work for me, I'm glad that this site is here. It sounds like a lot of women with vulvodynia have a lot of ways to make themselves feel better "down there". There are a lot of good ideas. Thank you, Jessica
CommentI placed an entry approx 1 year ago regarding my successful treatment of vulva vestibulitis that I had been suffering for approx 8 years. I reached a stage where I could no longer have sexual intercourse as the pain made me cry. I, like others was incorrectly diagnosed which delayed corrrect treatment for many years. Finally and thankfully I was correctly diagnosed and underwent treatement to rehabilitate my pelvic floor muscles. I was advised that unstable pelvic floor muscles can cause the vulvar area to become hypersensitive inflamed and painful . This treatment for vulvodynia allowed me to to heal these muscles by strengthening and stabilising the muscles as they monitor their own progress with Biofeedback (IE electromyographic - EMG) .. I thought my pelvic floor muscles were strong. I had been doing the pelvic floor muscle excercises recommended after having children. I was sure my condition was something to do with the soap I was using. When I first saw a reading of the muscle's strength through EMG I was surprised how low the reading was. And then, in the normal relaxed state, the reading was unaccountably high, meaning my muscles were in a state of tension. Overall my treatment took about 8 months of daily exercise. At times it was very difficult to find the time with two small children. It was very encouraging from the start though, so I was motivated to continue. The article I read was by Dr. Glazer (New York), but obviously, I did not see him, but another guy in Sydney. I have had nothing at all to do with Dr. Glazer. Good Luck anyone visiting this web site.
CommentZiggi, I believe that IC and vulvodynia are probably the same infection. Generally the bacteria you find in the vaginal canal you will find in the urethra. I think it is our genetic make-up that determines where the pain is; rather, certain parts of the body may react to the bacteria while others don't. That is part of the reason that I think that this may be why it is difficult to identify the antagonistic bacteria. What if it is considered normal flora, and in most women who harbor it they have no bad symptoms? We see this in bacterial infections all of the time of the reproductive tract. Chlamydia, gonorhea, some women have no symptoms, some have life threatening absesses and fever, and then every possibility inbetween. Your right that some antibiotics are thought to have anti-inflammatory properties, currently I don't think Augmentin is one of them. It is the tetracycline family, and some believe Flagyl also has those properties. I don't know about you all, but it seems like strep throat of the vulva to me. Pain, redness, inflammation, difficulty swallowing (being touched), soreness. Ziggi also pointed out the use of the antibiotics can allow yeast to grow, and others bacterias to thrive. All true. That is why I reccommend Dr. Toth. I simply wanted an I.V. of the Augmentin, which is given as Ampicillin Subactum (AS), but he saw high growth of a bacteria that was resistant to that so he started me on Mefoxin first. He had seen also that I had some yeast living up there, this is one of the reasons he was reluctant to give me the AS because it is a penicillin, which allows for yeast growth (not all antibiotics are the same in terms of giving space for yeast to grow). But, in the end he switched me to the AS because I was not feeling much better on the Mefoxin. He trully worked as a partner with me, admitting that even he may not be isolating the exact culprit of the pain. I think it is important to know that the medical community at large will never say it is bacterial unless the bacterium is actually identified, or hundreds of women are cured on antibiotics, which is unlikely to happen since very few think it is bacterial. I have given these examples before, there are many diseases that no one thought could possibly be infectious but are: Rheumatic heart disease, stomach ulcers, Lymes Disease, etc. I don't think haphazardly trying antibiotics is good, in fact I advise against it. But, I am giving you a specific antibiotic to try, Augmentin 500mg bid. Have your doctor look for yeast under the microscope, and do a culture for yeast first. Then while taking the meds also take diflucan every other day to keep the yeast down, otherwise you won't know for sure whether you feel better or not. This is not randomly taking antibiotics YOU ARE SICK!!! For a long time I might add. The problem with my little experiment I just suggested is that it will probably not cure you, you probably need an I.V., like long term Lymed Disease sufferers. But you will see if you respond favorably to the antibiotic before you go through the time and expense of an I.V. Also, you will feel much worse shortly after stopping the meds for a few days, and then it will go back to your usual pain. I just want to give you guys the real deal, and not candy coat it. Jennifer
CommentI am trying to find a Dr who knows about vulvodynia and has successfully treated women in the Tacoma Washington area. I have been seeing a great PT which has been very helpful but really need a knowledgible physician. My internist is great about working with me and reading the information I bring in but I am the first vvd patient he has seen. I would appreciate any information on OB/GYN's, Dermatologists, Naturopaths, etc any one has. Thanks and I wish all of you a painfree weekend. Diana
CommentTo Diana in Tacoma: I don't know if it's possible for you to get up to Seattle to see someone, but several vvd sufferers in the area go to Sylvia Berry at the UW Women's Clinic. She's a nurse practioner that specializes in vulvodynia. Unfortunately, she only see patients on Fridays, so it takes forever to get an appointment. But I think it was worth the wait -- I've been doing better since seeing her. Good luck.
CommentYes, I was diagnosed with a type of vulvodynia. I had been misdiagnosed for a long time (18 months). What really has helped me to heal up has been to go off sugar, really sweet fruits, things with yeast in them. I take acidopholus, vitamin C and e. I drink lots of water and eat lots of green leafy vegetables. I took medicine to kill parasites in me. I feel 70% better and it has been a couple of months to get here. I still have trouble around the end of menstruation. A book that really helped me was "The Yeast Connection". It is by William G. Crook. Also, The Candida Wellness Center will mail a free book. 1-800 869 1613 or 1800 644 1612 All of my doctors said that it wasn't a yeast problem and did biopsys and all. But, the book explained a lot of things about yeast being in your intestines and carrying on to the bloodstream. Please do not think this is a quack. It has really helped me and I want other women to be helped by it. I am in no way conncected to the writers if these documents. If you don't believe it, will you at least publish this email on your viewers lists so that they can experiement for themselves? Thanks so much! Andrea
CommentI've known for about 6 years that I had a prolapse uterus and would probably need a hysterectomy sometime in my 40's. Looks like the time is near. My GYN and I are planning the surgrey in the spring of 2001. My uterus has dropped quite a bit in the past few months. I have asthma and cough alot which may be causing it to drop more. I have been leaking urine from my bladder due to the pressure. For about 8 months I have been having more burning from my vestibulits. It's just been in the past week that I have connected it with the urine leakage. My panties have been extremly moist and have strong ammonia oder. I decided to try wearing a pad and most of my burning is gone. I think this was very irritating for that sensitive skin down there. I have extremely sensitive skin everywhere anyways the genital area not excluded. This problem of leaking urine isn't the whole of my problem with vestibulitis just one of the contributors. Maybe this will help some of you who may be experiencing burning and leaking of urine. It's not something that I had thought of to be one of the contributors until I realized this past week that I don't have to sneeze or cough to lose urine, I lose it on it's on and wasn't relising it. Where has everyone been? It's been weeks since anyone has written in. I use to check the site nightly since I found it back around the 4th of July. But no one has written in such a long time that this is the 1st time I've checked in a few weeks. I,ve gotten lots of info from this site and you ladies. I've tried a few things that some of you reccomended and some helped some didn't. Hope we don't all stop supportting each other. Take care!! Have a great Labor Day Weekend everyone. Chris
CommentI have been referred to Dr. Libby Edwards in Charlotte, NC. I have been placed on the waiting list. My GYN said they would not even give her an estimate on how long I would have to wait. If anyone has gone to her, please give me an idea of how long you waited to be seen. I am getting married in November and can only hope it is possible before then.
CommentHi, I made an earlier entry, thinking everyone stopped writing. Feel pretty silly. I have the 13th guestbook in my favorite places so it would be easy to find. Didn't dawn on me that a new book had been started. Just finished reading or at least skimming most of the entries. Kind of worries me when I've read that women who had hysterrectomies either seemed to get vulvodynia or things didn't get better after the surgrey. I am worried that it couldmake matters worse. But I am having so much back pain and abdomanial pain and cramping and other problems. Might help one problem just to make another one worse. Seems like you can't win. I keep wondering if I'm meant to live the rest of my life out in pain. Will I be alittle 80 year old women who will still be in chronic pain? If so God please take me at an early age. I've already lived the past 20 yrs with this I don't want to live anothe 40 like this. Hopefully they will find a cure or some kind of relief for us soon.
CommentI wrote my 'story' several guestbooks ago but I wanted to make a few follow up comments. I am on my third year with this disease. This past year, I spent 6 months in New Zealand. My regular routine has been application of vitamin E oil daily for both preventive and healing measures. Life w/ the E oil is better than before BUT it is not a guarantee. While I was in New Zealand, I did not have a single flare-up! This was by no means a vacation being there - I was under a great deal of stress for weeks on end and averaged 4-5 hrs of sleep a night sometimes for extended periods of time. My E oil which never leaves my side was put in the back of my closet and forgotten about. Since my return, I have had a really bad flare-up (during a stressful few days) and there is the presence of both cuts and pain. I have been paying a great deal of attention to the soy issue. After my experience, I am starting to question external factors in this disease - food being the major one. I never paid close attention to ratios of soy content in the foods I consumed there but it might be worth investigating. I am yet to approach any Dr. about this - I want to make sure that the Dr. I do go into detail about this with understands and does not take me down the psychological path...I have been through enough Dr. trauma already (i.e. being misdiagnosed). My best to you all as always - we are real people and not alone.
CommentHi, Has anyone ever investigated varicose veins as a cause for Vulvodynia? I have enlarged veins on my upper inner thighs and I'm wondering if there could be enlarged veins in my left labia (which tends to feel swollen and sore) and up into my vagina where I have a burning sensation. I wonder if the veins themselves or just poor circulation because of them may be causing my problems? Anyone else ever thought about this? Thanks
CommentI have had this problem since I was a kid. I was so glad to find out that these symptoms were "not in my head" as I was told by my family doctor, but they were real and treatable. It's too bad more G.P.'s don't know more about these symptoms - they just simply have to look it up on the computer, just like we all did. It must be too much to look up info such as this. But to tell me that this was all in my head was the worst feeling of dispair and insecurity I have ever felt. Thanks to such sites as these, I feel better knowing that there are people who care and are willing to help. Thanks.
CommentLinda, regarding your comments about varicose veins, I have acquired something since the early months of vulvodynia (2+ years ago). On the front part of my left thigh, I now have many of those purplish to reddish spider veins. I never had any of these before, and it's interesting that it only happened on the left thigh; my right thigh has none. When I first got vulvodynia, I'd sit real strange (leaning to the left to take pressure off the vulva). Often, I'd sit w/one of my legs under me because I couldn't tolerate sitting for more than a few minutes at a time. I thought maybe the spider veins occurred because of sitting wierd, but after reading your comments, it's made me curious. Well, just another of those strange and illusive occurrences that seem to be happening since this monster (vulvodynia) reared its ugly head. And Chris regarding your comments about urine leakage causing increased pain, I have the same thing. I don't know why I leak like this; my estrogen levels test out fine at the gyn. It's so strange.... .... but then this whole VV thing is quite a mystery.
CommentVericose veins were discussed with me by a doctor I once saw, Dr. Betty Bellman in Miami Beach, FL. She considers it possible for vericose veins in the vulva to be an antagonist to pain. I just wanted to comment that I still feel remarkably well following my antibiotic I.V. My husband still needs to go for treatment. I have almost no pain at all now, just a little overly sensitive near my clitoris.
CommentI have been suffering from vestibulitis for about 7 years and and was only diagnosed a week ago after repeated visits to various doctors. I also have had a cystitis problem for even longer. That is kept under control by amitriptyline, however the pain from vestibulitis is no better. I hope that by reasearch and web sites such as this, sufferers and their partners will be able to lead a normal life. Thanks for the web site and keep up the good work.
CommentJust to add to the last couple of emails; I don't know if there is a connection but during a laparoscopy 3 years ago, I was diagnosed with varices (varicose veins throughout the pelvis) I also had endometriosis. I had a hysterectomy a year ago and I now I have vulvodynia.
CommentJust to add to the last couple of emails; I don't know if there is a connection but during a laparoscopy 3 years ago, I was diagnosed with varices (varicose veins throughout the pelvis) I also had endometriosis. I had a hysterectomy a year ago and I now I have vulvodynia.
CommentHas anyone tried taking Guaifenesen(?) for vulvar pain? I have just started taking it and have had some good days. Just curious of anyone else takes it and how it is helping you. I will post my name and e-mail address when I see how this protocol works. In the mean time, if you do use this, please post your experiences. Thank you!
CommentNow this whole varicose veins thing is getting interesting. I had a hysterectomy 5 years ago due to endometriosis. The vulvodynia started 3 years later. As I've thought back though, it was showing the infant stages of the disease maybe a year or so after the hysterectomy. It was a bladder infection, yeast, and bacterial vag. infection that brought the vulvodynia to a head. But I do remember sometimes getting very raw when wearing jeans and feeling sore during sex before this. So again, it makes me wonder about the hysterectomy and endometriosis being major contributing factors, and also wondering how much of a part varicose veins may play into this. Does anyone else have any thoughts on this varicose vein thing? Or on the hysterectomy, endometriosis thing?
CommentI wrote in this guestbook awhile ago and just wanted to update. I read about using Magnets in a previous guestbook and so I decided to try them. I have been wearing them for about a week now and haven't really noticed any difference. Of course I had different symptoms then the other girl had. I have vulvar vestibulitis and only notice pain when I have sex with my husband. I used Amitriptilyn for awhile but as soon as I got off the pain came back. I am very interested in the theory that this could be gene related. I do have problems with nasal congestion (I get sinus infections regularly) and also the women on my dads side of the family have problems. My grandma had a miscarraige and pain with sex when her uteris tilted. One of my aunts had a miscarraige, irregular bleeding, pain and had to have a histerectemy. My other aunt had cronic yeast infections since the age of nine and has pain with sex when her uteris tilts. So I think that maybe female problems runs in the family. I wish that someone was doing research on this. I believe that my problem stemmed from have bacteria vaginosis 3 time and cervixitis all within 2 months time. I think that my vestibule glands became inflamed and now the inflimation just won't go away. I feel deeply for all of you who have this worse than I do. At least mine is bareable and I don't know anything is wrong until I have sex. I hope that there is an end to this soon. And I agree with the person who said we should dump these guestbooks on congresses lap so they can see how many women are suffering. God bless you ladies!
CommentHello. I contributed to one of the guestbooks about a year ago, and now I am writing again. I've suffered with chronic vaginal itching for almost three years now--been tested for everything, tried everything. I was just wondering if anyone had any ideas about how gaining weight contributes to this problem. I've gained quite a bit of weight since it all began, mainly because I've been so depressed. Also, I have intense nasal itching, like never before. I wonder if it is all related? The itching is so bad some days, I almost wish I were paralyzed from the waist down. I know that is a terrible thing to say, but I I think it would be better than this suffering. Will it ever end?
CommentI believe that I suffer from vulvodynia, and have to ask this question: does anyone have severe itching (resembling a yeast infection)and burning with urination the day after intercourse? I also feel "battered and bruised" about the sit bones, and around perianal areas. It just feels sore and raw to the touch. Please let me know if anyone else experiences this after intercourse--I realize that we're all not able to do that because of the extreme pain, and I hope that you don't take offense to my questions. Thanks so much.
CommentPlease ladies ... Knowledge is power ... As I read all the entries I can't help but think how much our problem is similar to Candida. Please search for "Candida" on the internet and start reading the sites. The Karen Tripp webpage is very valuable. If you read mothing else on Candida - just read every inch on her site. It will explain why we have problems with soy, sugar, caffeine etc. Good Luck in the fight! Debby
CommentHas anyone considered going to a Chiropractor? I have my second appt tomorrow morning. Lsat week he said that the nerves can cause "female problems" You know how they can manipulate your spine and stuff, maybe our backs are outta wack or something! Anyhow, I am trying this and I will see if it helps at all and let you guys know. Also, i read all this stuff about Soy, has anyone gone the an allergist to see if they are allergic to Soy? Maybe this is an allergy to some food and this is how our bodies react to it. Some allergens cause sneezing others cause rash, others cause itching, others cause burning....do these sound familiar?? When I was young, I went to an allergist and found that I was allergic to corn, etc. But corn is in alot of things, coke, chips, etc. Look for corn syrup or anything else that sayd corn... so I was put on allergy shots for a while. then when I was 14, I started having yeast infections, but I was no longer thaking the allergy shots...I don't know, maybe I am "stabbing in the dark", but reading all that you guys put in here helps alot. Maybe my input will help someone else too! Let me know what your thoughts are! Tammi ps- Callie in Florida--where do you live? I too am in FLA
CommentAlthough I think allergic reaction is a possibility for some people, overall I don't think that is it for most. I had a vulva biopsy that showed eosinophils in the tissue. Eosinophils are produced by the body during allergic reaction. People with hayfever would show eosinophils in the tissues of their sinus and nasal passage. Doctors LEAPED at that saying it must be my soap or something in the air. For a while I bought into it, but in the back of my head it made no sense to me. My deep redness, inflammation, and pain, was the worst at the entrance to my vagina on my vulva. If I was allergic to my laundry soap it would have been the outer part of the lips I reasoned. I do know that allergies can develop over time, but I had never had any allergic reactions that I knew of. I do feel that certain foods can aggravate the system, or even make urine more acidic, but I believe we find some relief from changing our diets because we are taking away an aggravating antagonist. I do not believe it causes our syndrome. I compare to putting salt in a wound. The salt did not cause the cut on your leg, falling down did, but oh does that salt make it hurt. Anyway, since my doctors saw the eosinophil I went for both dermatological skin patch tests (it tests for chemicals directly on the skin) and allergy tests (pollen, foods, dust, etc.) Not one allergy. NOT ONE! I switched back to the laundry soap I liked, and stopped making myself feel more obsessive compulsive with rinsing twice, etc...I never saw any difference in my pain anyway. I should mention that I finally spent a day at the NIH medical library, and eosinophils can be sent by the body for other invaders such as bacteria and parasites. Not to say that changing your diet and being healthier is not a good thing, it is. But, when it makes us more mental than we already are, enough already! If eliminating something from your diet helps, great, but if it doesn't I am not surprised. My vulva looks better than ever, almost no redness. I really feel the I.V. antibiotics did the trick. I know I am just another posting on here, but those of you that complain about infection after infection, and then eventually developing vulva pain, have you ever thought you never really got rid of the infection? That this is the way the infection progresses.
CommentI have been on your registry for a couple years but unfortunately the phone company has changed my area code from 612 to 651. I couldn't find a way to correct my info, so I submitted another page.
CommentTammi, I live in Orlando.
Commenthi, i'm 19 and i've just been diagnosed with vulvardynia 5-6 months ago. i've had the pain (stabbing and itchiness) since as long as i can remember... even as a little girl, and when i had my first sexual experience it was sooo painful, i knew something was wrong. my boyfriend and i have tried to have sex in the past and it just wasnt happening because it was too painful and so i went to a few doctors who diagnosed me with psychological problems associated with sex and vaginal infections. i was really lucky to find a doctor who knew exactly what i had so soon in my life. i love this site and how i can read other people's experiences with vulvadynia. i thought i was the only one for a while, i mean i KNEW there were other women out there with this problem... it's just i felt so alone. anyway, i will be calling back at this site often. thank you all for sharing things. and thank you to my boyfriend... he's the only 21 year old i know who can go to bed with a girl and not expect or harrass her for sex! i love him so much, he puts up with a lot. anwyay, this site is choice, see you all around.
CommentCAN ANYONE TELL ME IF THE SYMPTOMS I HAVE MAY BE WHAT YOU ALL ARE TALKING ABOUT.RECURRENT YEAST AND BACTERIAL INFECTIONS.PAIN DURING INTERCOURSE.STINGING, ITCHING.IT ISN'T 24/7 PAIN BUT WHEN IT IS HERE IT IS PAINFUL AND ANNOYING.DOES ANYONE KNOW OF A DR IN STL THAT KNOWS OF VULVODYNIA?
CommentHi, this is my first time writing on this website. I have been struggling with vuvlvodynia for about 5 plus years. I have been taking Elavil to help with the pain but am still in pain almost all the time. About 3 years ago I also developed incontinence. It used to only happen when I laughed or coughed. Now it happens all the time. I had a baby in December1999. Before my pregnancy I was taking 50mg of Elavil a day. During the pregnancy the pain got much worse so I had to increase my dose to 75-100mg a day. I was apprehensive about this because research studies have show some abnormalities in animals, no human studies yet, for animals that have taken Elavil while pregnant. I did have some complications, my amniotic fluid became too low and I had to be induced. Now after pregnancy, I am in pain constantly and have increased my dose of Elavil to 125mg a day. It isn't helping very much. We want to have another child but I can't bear to be in more pain than I am now. Has anyone developed incontince after being diagnosed with vuvlvdynia? Any suggestion would be helpful. Also I just found a dr. in my area who was on the registry. I am going to make an appt as soon as possible. I'll keep you updated. Thanks for reading!! Dawn
CommentTo CALLIE I live in Lakeland, but I did live in Orlando for a few months. Please email me, I would like to find out who your doctor is and what they say to you; I still go to see my GYN in O-town! Maybe we see the same one! thanks...
CommentTo: Joane, Callie,Maria Teresa, To Joane: I have IC and V V and I experience all the pain you describe 24/7. Those "sit down" bones that you describe throb and ache constantly, like right now due to sitting at the computer to long. I am 46 now and have not been able to have sex or arousal in any way, shape, or form as the pain is so hideous it causes me to pass out. Sometimes up to 7 days after on sex act. It's just not worth it, so, I am a medical celibate. I have not had sex or even been touched since 1995 and it looks like I'll be that way for the rest of my life. The beat up, battered, bruising feeling you described is both "normal" for IC and V V, with or without sex. The sex just makes everything worse. I take opiate narcotics for the unbearable pain and I am totally disabled and unable to work at all. You can try to get a prescription for Lidocaine Jelly 2% or Lidocaine Ointment 5% to numb the hell out of every orifice in your body before you engage in sex- but in my case when it wears off, the pain just roars its ugly head even more with a vengance. You can't trick IC/V V. Give that a try and get a prescription for opiate narcotics (stronger than useless Darvocet or Vicodin) and see if that helps. To Callie: There have been a flood of articles about Pelvic Congestion Syndrome on all the women's sites on the Net lately. I think Dr. Glazer or Perry even had a posting about this. Pelvic Congestion is definitely caused by varicose veins in the pelvic area and they can do surgery on these to relieve the symptoms. There are numerous women's health web sites regarding this particular topic. To Maria Teresa: Yes, Neurontin is gabapentine. If you don't live too far from the UK, you might try to see a doctor there. There are web sites for vulvodynia strictly for people who live in the UK (Inglaterra). And England has a large community of people from espana. The ICA has a pamphlet on IC in Spanish, but I don't think they have any translated into Spanish about vulvodynia. There are software programs you can buy that can translate English information into Spanish. I hope this helps. Buena suerte (la familia de mi madre viene de cuba y puerto rico). Laura RN (enfermera)
Commentbefore you even think about taking oxycontin check this site out www.oxycontinNightmare.homestead.com
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CommentWow! I am so excited that I stumbled onto this website. I was researching Estrace and here I am. I have been having major pain with intercourse for the last two years. Of course this happens to be the first two years of my marriage. It is really awful and has been a TERRIBLE strain on my marriage. No one could tell me what was wrong until a doctor at Planned Parenthood two weeks ago thought that I might have vestibulitis. I had never even heard of that and believe me I have been searching. I have felt completely crazy, that this was all in my head and that I must be turning into one of those hysterical sex hating women. I have always enjoyed sex (who wouldn't if it doesn't hurt...) and have (had) a truly amazing sex life with my husband. I have felt a loss like the death of someone with the dissapperance of my sex life. Sometimes I feel like I am not a real women anymore and have noticed this carrying over into how I feel about myself even in the most trivial areas. I am really lucky to have the husband I do, but at the same time I feel guilty that his sexuality has been dampened and he didn't even do anything. Does anyone else feel this way??? We really want to start a family and on top of sex hurting and making it a chore rather than a blessing, I am scared to take Estrace because it has explicit warnings that pregnant women should not take it. My regular gyn told me that it was fine (topical use only) and would not cause birth defects but I am skeptical. Does anyone know about this? Thanks to whoever started this site, I am sad that there seems to be no cure, but just knowing that I am not the only person that feels this way makes me feel much less isolated. I am sending a a huge hug to all of you who have written, you have know idea how your stories lifted this load of worry, depression, and isolation. Take care.
CommentI'm just wondering if there are any information as to what type of symptoms are most like to be helped by biofeedback. I have constant burning in the vulvar area, as well as burning when I urinate or have a bowel movement. Sex is out of the question. Has anyone with these specific symptoms been helped?
CommentI'm just wondering if there are any information as to what type of symptoms are most like to be helped by biofeedback. I have constant burning in the vulvar area, as well as burning when I urinate or have a bowel movement. Sex is out of the question. Has anyone with these specific symptoms been helped?
CommentI first got vulvadynia about 4 years ago. It took many doctors and treatments before they realised what I had. When they said it was incurable I cried for about 2 days. I had the vvd for about 1 year and a half, when I split up with my boyfriend it simply went away. I have now been with my boyfriend for about 1 year and this horrible thing has raised it's ugly head. I don't want to go through this again. I strongly think it's very sexually orientated for me. What I can't figure out is how can I not have it one day and the very next day I've got this terrible burning which makes me feel like bawling. Please someone write with ideas!
CommentHello fellow sufferers of VV This is my first time writing here. Today is my 30th bday and I all I thinking about is how much longer will I have to deal with stinging and burning after every time I urinate! The entire area feels raw. Ouch! I don't have IC or another bladder condition. I finally found out last week from a uro-gynecologist that I have VV after going back and forth between gynecologists and urologists for months. I am sure there are SO many more people out there suffering but that they just don't say they are in pain since it is such a "private" area or their physician just doesn'tcheck for VV. My doctor said to try the low oxalate diet, take calcium citrate pills and apply a topical cream and see if that helps before discussing other treatments. I can tell from all the people on line that many of them don't seem to find relief from those things. I know to wear cotton, use unscented things etc.. I have always had allergic problems with perfume etc.. so I don't use any. I just wonder if we will ever have some relief from things. I am a teacher so you can imagine how difficult it is to run to the restroom in between cla |
