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CommentWelcome to the fourteenth vulvodynia guestbook. We open this new guestbook along withthe inauguration of a new email list for vulvar sufferers, their support networks andprofessionals, to share information and provide mutual support. To join the group pleasego to: http://www.vulvodynia.com/mail.htmand follow instructions to join the vulvodynia-support email group. Thanks for all of yourcontinued 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 thethirteenth book. It was very valuable information but it took me three hours to getthrough it all. I have three small children and get many interruptions. I was justwondering if anyone had ever suggested some way to summerize the books. Especially thedrugs, treatments and doctors that have proved helpful. If anyone has any ideas or thinksthis 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 havenever had sex except with my husband. Sex is very painful and discouraging to us bothbecause of the pain. This information will help as I learn more about this all...THANKYOU!!!
Commenthello, i am sitting here in tears reading others stories about this condition. i am 22and have only be married for 2.5 years. i started expriencing pain during intercourseabout a year ago. i was just diagnosed with vestibulities 1 month ago(thankfully, this wasthe first time i went to a obgyn and he diagnost me with this), and have been put on thecream Clobetasol...i don' t know much about this condition, but i do know that waiting for20 to be with a man and then have your sex life be disrupted 11/2 years into our marriagereally disheartens me...because from what i see there seems to be no end in sight. i havegotten to the point where it hurts to urinate as well. thankfully it doesn't hurt all thetime, and i feel for those that it does. i just want to thank all those who have writtenin this book so that others will know that they are not alone, and that we all owe a bigthank you to our wonderful, patient husbands, who are willing to go through anything andstill love us and be with us...and maybe someday we won't have to deal with thisanymore...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 somewomen. If I took soy isoflavones in supplement form, would this aggravate the problem aswell? Or is the high oxalate-content of soy the culprit? If anyone knows the answer tothis question, please enlighten me! P.S. Julie - Dr. Glazer has an excellent FAQ at
CommentThanks Allison and Stephanie for writing back. I was on acutane for stubborn facialacne. Now my face is as clear as ever. As for it being a cause of vulvodynia, every doctorthat 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 myproblem to.
CommentCandice -- Doctors always sound so adamant, even when they don't have a clue. e.g., I'msure no MD initially thought a diet drug could cause a fatal heart valve disorder. Or thatBiaxin and Seldane combined could kill you. They only catch on after severalwell-publicized cases. Look at all the drugs that have been approved, only to be taken offthe market. MD's change their minds (or stay clueless) all the time. Maybe the makers ofAccutane have a registry for possible side effects of Accutane. Maybe an acne websitewould 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 notto 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 thissemi-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 coincidencesince 1 in 5 women suffer from Irritable Bowel Syndrome. So I called the company and theygot right back to me. They took all of my complaints, (probably just to protectthemselves). 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 aprevious post. I was BETTER/NORMAL for over six months. I seem to have had a relapse, andam going back to the doctor within the week. Perhaps it's because I wore tight clothes afew weeks ago, or used a scented soap at a friends house, but I am definitely suffering aagain. i feel like an idiot posting my success story (for 6-8 months) and then having arelapse. It is very discourageing both for me and my boyfriend. We love each other verymuch, and want to get married, but we have never had a normal sex life. I feel likebreaking up with him just so that he may enjoy the pleasures of a real sex life. I get sodepressed sometimes at the lack of positive treatments. I will go see my doctor, and seewhat he has to say. Does anyone know about the surgery to remove the affected skin??? Isthis bad/ good? Here is another possible cause for me... a few years ago, I dyed my hair a bunch oftimes rinsing it in the shower. My doctor says this is definitely a possible cause, anythoughts? Stephanie
CommentTo Stephanie: Hi, I'm sorry that you've had a relapse. According to the Dr. I went tofor a diagnosis, every woman will Vulvodynia will have occasional relapses. I also dye myhair and rinse it in the shower, but I myself haven't had any problems with that. Ofcourse I read on Dr. Weil's site that hair dye can cause cancer. Terriffic!! I hope youget some relief very soon.
CommentNow that we have a new guestbook could the format PLEASE be changed so that the newestentries appear first. I don't mind the scrolling down as there are shortcuts but it'swaiting for the page to load that takes forever. It's not so bad now as it's a new bookbut after a couple of weeks it becomes a bit of a pain. Sorry for the whinge but I thoughtmaybe it was something that could be kept in mind for future guestbooks and would makethis site a bit more user-friendly.
CommentDoes anyone know of a good doctor who will treat vulvodynia in Michigan? I have beensuffering 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 recommendsomeone, would you please e-mail me back or post a message? My husband's e-mail address islisted above - we both use it. Thank you so much!! I am so glad I found this site and nolonger feel like I am alone.
CommentMallory: regarding your plea to change the guestbook. Sorry but when I started theguestbooks a couple of years ago the software in use at that time presents entriessequentially from the oldest to the newest. Even as the books become longer, and if youare 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 keystrokes will have to do for now. If you want more immediate interaction with others youshould join the vulvodynia email lists or the vulvodynia chat room. For information on theemail lists go to: http://www.vulvodynia.com/mail.htmTo reach the vulvodynia chatroom go to: http://www.vulvodynia.com/chat.htmThanks 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 thisdiscomfort for over a year and a half. I have seen numerous doctors, and have beendiagnosed 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 andirritation. Especially when I wear tight clothing. I am currently using vitamin E, but itdoes 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 anexpired vial!! One thing after another.... I have alway had strange sensations in myvaginal area. It feels as though sometimes it "falls asleep". The tinglingstarts and then it wakes up again. A few years ago, the area would wake up and be justfine. But in the last year and a half, I had been treating myself for a yeast infectionwith Monistat, and then the pain really heated up. I went to see my dr. and it turned outthe I had a bacterial infection all along. I was killing all of the yeast and creatingmore bacteria. I feel that I somehow changed the skin area around the vaginal opening withthe Monistat cream and now I cannot get it back. Any suggestions? I would really like tobe normal again.
CommentHi Ladies This is my first time writing in the questbook. I have been dealing with thisdiscomfort for over a year and a half. I have seen numerous doctors, and have beendiagnosed 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 andirritation. Especially when I wear tight clothing. I am currently using vitamin E, but itdoes 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 anexpired vial!! One thing after another.... I have alway had strange sensations in myvaginal area. It feels as though sometimes it "falls asleep". The tinglingstarts and then it wakes up again. A few years ago, the area would wake up and be justfine. But in the last year and a half, I had been treating myself for a yeast infectionwith Monistat, and then the pain really heated up. I went to see my dr. and it turned outthe I had a bacterial infection all along. I was killing all of the yeast and creatingmore bacteria. I feel that I somehow changed the skin area around the vaginal opening withthe Monistat cream and now I cannot get it back. Any suggestions? I would really like tobe normal again.
CommentHi, I've been suffering from vulvodynia for two years now. After getting very littlehelp from the first two physicians consulted, I finally had to figure out for myself whatwas wrong with me - thank goodness for the internet! I've now been referred to Dr. BensonHorowitz, but have not yet made an appointment with him - partly because I have to travela 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 sohappy to discover this questbook yesterday - I've been in such despair recently and ithelps to find I am by no means alone! I am 41 years old, mother of three, married 16years. I have some degree of burning almost constantly. Its mostly on the left side on thelabia 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 oftenbothers me almost more than the burning, though, is the feeling that my left labia isswollen. This makes wearing pants, and sometimes just sitting, uncomfortable. I firstnoticed my symptoms about two years ago after a twelve hour car trip. I sometimes wonderif I caused some kind of nerve or circulatory damage by sitting in jeans for so long. Ijust 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 myproblems began that day, or whether they were just very evident because of all thesitting. 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 toinvestigate as causes. I also plan to try some of the many home remediessuggested....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 toexpect or maybe reassure me a bit, I'd appreciate It! Also, has anyone ever considered apossible link between this problem and the wearing of acrylic nails? The liquid thatacrylic 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 ifanyone else has thought of this. I apologize if this topic has already been addressed - Ihaven'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 Ihave had only one intercourse in my life .Besides that I'm desperate depressed and my lifeis 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 thisproblem is associated with soy or soy bi-products. No, I actually believe the problem withme 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 neverknew that soy was used in body soaps. Certain soaps bother me, as well as foods. I don'tknow 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 beenreally watching what I eat lately and I've been fine. I still have slight burning at timeswith urination but not as much as I used to. I'm no longer inflammed, itchy, or sore. I nolonger feel like I have "chapped lips". Anyway, it has been helping me. I can'tsay it helps others, but hey it is worth a shot, after all else fails. I don't even haveproblems lately with my IBS. Who knows. All I know is that I no longer fear the pain ofintercourse and I don't cry all the time. I no longer am stuck taking Prozac or soothingmyself with Lidocaine. I feel pretty lucky lately. I just hope I stay this way for a longtime. I'd like to hear more about what you think. I'm glad someone else is trying out thissoy thing. I'd like to learn more about soy. I do know it is good for your body but Idon'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 beenincredibly diligent about not eating foods with hydrogenated soybean oil and my pain hasbeen substantially reduced. More just tenderness, than the burning, raw pain. Don't knowif 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 theworst 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 stupidquestions.all of the stuff that i've been reading sounds like some symptons that i havebut i haven't been diagnosed yet.the itching,burning,constant yeast infections,bladderinfections.i've been to 2 different doctors and have expressed my concerns and all they dois give me antibiotics.i only learned of this site because girl at work said her sisterhas the exact same problems.I have gained 30lbs in the last 6 months or so and all thedoctor says is to keep excercise more......4 days a week isn't enough???????????? whatelse 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 cutout the soy. I hope that you continue to write in the guestbook, because it good thatsomeone else is experimenting with soy limitation. I will continue to be interested in howthis works for you. I know I've been doing so well (after everything else I tried failedme). Maybe, soy eventually builds up in the system (just a guess) and creates reactions insome people. I know at first I couldn't eat anything with soy, but lately I've been slowlyre-introducing it into my diet again. However, very small amounts. I've been doingextremely well. I can't wait to hear how you progress. Maybe, this may have something todo with Vulvodynia. I'm glad that you responded. Good luck, and I hope that cutting outsoy works for you Kathy.
CommentOne last thing Kathy! When I first started avoiding soy, my vulvodynia got a lot worsebefore it got better. So, don't give up if the vulvodynia gets a lot worse before you feelbetter. It will take some time just with anything.
CommentDoes anyone know of any doctors in Utah who have experience treating this awfulproblem? I have been in some degree of pain nearly every day for 5-1/2 months now. Itstarted with a yeast and bacterial infection (at the same time) where the pain didn't goaway after the infection did. I've since been told twice more that I had yeast, afterbeing told 3 times that I had NO infection. My current gyn has heard of vulvodynia, butsays he doesn't think I have it (maybe because oddly enough sex isn't painful--I just havepain to some degree virtually every day). I am sick of treatments that don't help--thelatest is boric acid capsules since I did test positive for yeast, and I've gotten worseusing them. The only cream I've found helpful is called Panthoderm, which cools the skinoff for a couple of hours or so. Feel free to e-mail me with any suggestions or just tovent about this.
CommentTo all who avoid SOY--- Is there a special place to look on the internet about foods/products without it? Orhave you guys just been reading labels? This "thing" we have is horrible, and Ihave been off birth control pills for 2 months now, just to see if it would help any, Ihave noticed some slight improvement, but not 100% i now have yeast infection from Amoxil875mg 2x day for sinus infection. Yuck! You can't even bee sick without something elsehorrible happening! I have also read somewhere in one of these archives that EveningPrimrose Oil helps. I take it every so often ,and it seems to help somewhat. Anyhow, goodluck with whatever you try, and if it is something new, please write it here so we can seeif 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 pointthat you can actually make the comparison? I see soy on every label I read. Is there awebsite (or any resource) that compares amounts of soy in various products? (cereal, forexample) Thanks for your help. I wrote earlier that 20/20 did a show about the mal-effectsof soy earlier this summer. It was really, really interesting. They might have referenceson their web site.
CommentI am 21 years old and I have had Vulvar Vestibulitis for about a year and a half. I gotit after having Bacterial Vaginosis multiple times. I have been on Amitriptyline off andon. The longest period of time I was on it I found some relief, but it caused me to haveabsoulutly no sex drive so I am off it now. The only thing I have found that has given mealmost pain free sex is extra strenth Ambesol. I know that sounds weird but it contains20% Benzocaine which when applied to the painful area, numbs it for about 10 to 15minutes. If anyone has any other ideas for longer lasting relief please let me know. Myhusband 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 inApril 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 wantto 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 amuscle relaxer. I have just now started on it, so I don't have anything definite to reportas yet. I will keep you informed.
CommentRegarding the elimination of soy--at this point, I have been relying on food labels tominimize soy in my diet, which is frustrating. Many of them say "contains one of thefollowing: hydrogenated soybean oil, cottenseed oil or rapeseed oil." (I don'tunderstand how food producers get away with that--I thought the idea behind food labelingwas to identify what's in the product!!) Anyway, I've been avoiding ANYTHING that even mentions soybean oil--whether it's listedas an ingredient or a possible ingredient. It's really hard -- pretty much means youeliminate any commercially baked foods, other than expensive artisan breads, gourmetcookies, etc. (The good news, however, is that unlike the low-oxalate diet, this approachdoes let you have chocolate!)
CommentI had an entry in the last guestbook and I wanted to update everyone on how I amfeeling. First of all I too took Accutane when I was 17 years old for acne. I am 25 yearsold now and my main problems for the past several years have been recurrent yeastinfections, which finally seem to have gone away. Along with the yeast infections I havealways had vulvar irritation. I am unable to wear tampons and sexual intercourse ispainful. I was put on birth control pills at the age of 17 to regulate my period, but wastaken off several months ago by the doctor. She thought this could be the cause of myyeast infections. Today I go back to the gyn doctor and I still have vulvar redness andirritation. Also last time my gyn dr checked my hormone levels and my prolactin level iselevated. I am getting very frustrated with the irritation and would like to know anyonewho 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, Ihope 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 relatedover the concern of the whole thing. So, my list as follows: back pain, bruised-feelingsit bones, burning near and around vaginal opening--sometimes it feels like I've beenwearing tight jeans too long (again a bruised feeling), burning after urination, but notall the time, rectal pain and itching,"skin crawling" feeling around vaginalopening, vaginal itching (sometimes severe like a yeast infection, but there isn't anykurd-like discharge,painful entry with intercourse--that can continue on throughout,numb/tingling in the clitoral region and vulvar region, sore pubic bone and occasionallyback pain. Whew. I know that we are none of us physicians, but if anyone has combinationsand or all of these, please write to me. I've had some luck with Dr's (mostly women) whohave at least heard of this disease and are interested in what I have to say, but tryingto pin-point symptoms that aren't always around, or only one or more are present. I'veread most of these postings in all of the books (extensive!) and there are too manysimilarities, so I'm trying to narrow it down. Recently the discussion has been aboutsoy--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 wisdomteeth were infected--I waited too long to have them out and then tried to put it off, andoff, and off...In any case, I hope that someone with some insight as to what to tell Dr'sis reading this--any help trying to end this would be greatly appreciated. Take care, allof you.
CommentI would like to ask whether any of you have PCOS (Polycystic Ovarian Syndrome) as wellas Vulvar Vestibulitis. I have had both for at least 10 years. Just wondering if there issome connection between the two diseases. How about Lichen Sclerosus? When I had a vulvarbiopsy several years ago, I was diagnosed with that, but my current GYN believes I haveVulvar Vestibulitis. Has anyone noticed an increase in pain over time? When I had my firstintercourse 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 symptomsso I can write about it here!
CommentI am so grateful for your website. Doctor's so far have not diagnosed me correctly. Ihave tried steriod creams on and off for about two years! I have had this condition in thepast. Once nystatin worked and once betamethasone worked. Now I have been onhydrocortisone 2.5 and it works great, but as soon as I stop. It flares up again. I amknow only going to try an anti-infammatory that does not contain steriods. I got the namesof 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 theweb. Regardless, I want to help her uncover exactly what is happening to her body. Shethinks it is Vulvodynia, but we are unclear of the exact symptoms. She has pain on theoutside, 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. Wehave been trying to stick to the low-oxalate diet and it has had some good results, butshe 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, weare in San Francisco... are there any specialists, support groups, resources, etc. in thearea 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 yeastinfections, bladder infections, pelvic pain, back pain and too many others to mention for5 years now. I took info form vulvodynia.com to my Dr. (the 3rd one by the way) and shesaid she had heard of this disease but it didn't occur to her that this could be what waswrong with me. This was after ruling out everything from diabetes to hiv. It's not badenough to be in pain but having to be humiliated and made to feel like you are imaging itall is a bit much to say the least. I have found some relief by not eating yogurt andwhole wheat bread, which the Dr.s feel is the cure for yeast infections. I just couldn'teat them any more. This might just be a fluke. I still have pressure and inner pain butthe itching and vulvular pain is gone. I am afraid I am just exhibiting differentsymptoms. I live on tylenol and use a heating pad quite often. I can't take alot of medsbecause of migraines. My doc wants me to go to a infectious disease doctor in anotherstate. I am up to my arm pits in Dr. bills already without getting any better. I reallythink it helps to have a good support group. My husband is great and I hope to talk moreonline also. I know everyone is going to freak on this subject but what abouthysterectomy. Is there total relief even after going this far? I also have ovarian cystson both ovaries, a fibroid tumor and they think the beginning stages of endometriosis. Iam only 32, but how much has to be wrong with a person before the insurance company willok a surgery such as this? Good luck everyone. I hope more Doctors will take note of oursuffering.
CommentHi Tammy: Unfortunately my hysterectomy many years ago had no effect on my Vulvodyniawhatsoever. I had Vulvodynia before the surgery and I still have it. So, if I were you, Iwouldn't rush into surgery unless it's absolutely necessary. I hope you find some reliefsoon.
CommentHi again, I am sandra,I am 30 -31 in sept. I have just lost another job because of thissh-t......... I am not to happy, we are about to lose our house ,cars and what ever elsethey want to take,,..,.,. we can't get any help and i have been turned down for disabilityfor the 4 time. they say that this sh-t is not disabaling,,,,,,,BOY WHAT I WOULD GIVE TOSEE THEM LIVE WITH THIS and knowing that there is no cure.......this is just not rightthat we have to sit back and watch our lives get trashed because of this. and we can't doa thing about it....I AM REALY STARTING TO HATE MY LIFE....BUT I HAVE TWO KIDS THAT I HAVETO 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.htmlwhich might help you learn about symptoms. But there's a good, concise description of thebroad 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 itwas 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 beof help to you. On side note: speaking as a very lucky woman with an incredibly supportive partner whoparticipates with me in dealing with this problem -- I hope you know that your support andinitiative with this is probably more helpful to your girlfriend than you can possiblyimagine...
Comment8/25/00 Hi Ladies, I have suffered vulvodynia for eight years. I am from Spain, here nodoctor knows anything, neither they investigate. I want to thank to all of you because Ihave learnt a lot reading the guestbook. I would like to ask you a favor, when you writethe medicines´ name that you have, please, write the ingredients that they have. Thesemedicines are sold with other names in other countries, in this way we will be able totell our doctors the medicines that we have to take. For instance: amitriptyline it iscalled Elavil in USA, in Spain it is called Tryptizol. Estradiol it is called Estrace inUSA, in Spain it is called Ovestinón. This will be very helpful for the women who suffervulvodynia and who don´t live in USA. Marcy, Guestbook nº 13, 8/11/00 What ingredienthas 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 theonly way I know if soy or soy bi-products are in a product. As I continue to think aboutsoy allergies or soy sensitivities, I reflect back on, you won't believe this, one of mydogs (everyone will probably get upset with what I'm about to say). I know, people are notdogs, but just stay with me for one second. I know that dogs, when allergic to soy candevelop hair and skincoat problems. This sounds really stupid, I know, but I remember mydog being very itchy and miserable. The vet said to change his diet. NO soy! Well, longstory short, my dog got better. I've heard that food sensitivities, allergies, can presentthemselves 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 allergicor 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 definitelynot a doctor, and I don't have a cure for vulvodynia. I just think that doctors aremissing something. I wish there would be more research into soy and if it could causesymptoms of vulvodynia. Who knows what we would find out? Yeah, soy is supposed to be goodfor our bodies, but what happens if our bodies don't recognize soy as a good thing? I justknow 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, andreaching out for hope. I am no longer alone nor am I as depressed as I used to be. I amfinally able to reach out for new ideas and helpful hints. Thank you for allowing me toponder 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 yoursymptoms? The reason I ask is so many of us have different symptoms which leads me tobelieve there are many causes. If we could know exact symptoms it would be easier to knowwhich 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 irritateVV? I know to go without at home, but can't bring myself to do so at work or other publicplaces. I tried cutting the elastic off the legs of my cotton hi-cut briefs, but that justmakes them ride up more. I've even started eyeing my husband's jockey shorts! (They lookpretty comfortable.) But I'd feel ridiculous wearing them, I think. Also, has anyonenoticed that the pain gets better (or goes away) while lying on your stomach? This seemsto transfer it to my back, though. What a strange and depressing condition this is! I feellike I have less and less of a life every day. Someone said they were turned down forDisability because of vulvodynia. I've been told you should emphasize DEPRESSION andANXIETY 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 routemyself, as sitting at a desk is becoming torture. I also have frequent urination andburning. I keep telling the dr. the pain is on the OUTSIDE, but they just give me moreantibiotics, despite the fact that an infection rarely shows up. Now they want to do aurethral dilation. I can only imagine what kind of trauma that would cause. The dr'sreasoning is: "Well, sometimes it seems to help." Save me from uninformeddoctors!
CommentDoes anyone know of a good kegel exerciser? I have seen a couple of different types incatalogs but they don't really explain what the differences are. Has anyone tried any ofthese products?
CommentCathy, you wrote in on July27/00 asking me about the use of 'Apple Cider Vinegar'. I amsorry 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 isthe real thing. You can purchase it at health food stores. I am still using it and as wellI take 1 tsp. in a glass of water three times a day. I am so thankful I found that oldbook with this information although I now notice quite often apple cider vinegar ismentioned to do with irritation, inflamation and itching in articles that I have read. Ifind that more and more articles on why are drugs not working any more. I honestly thinkwe have to go back to natural remedies. After all that was the basis for all medicinalremedies at one time until they began to make all these synthetic and chemical so-calledcure-alls. Anyway I hope you have had the success I did, I now only have to use it topicallyoccasionally. but I still faithfully take one tsp. in water three times a day so perhapsthat 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 getdiagnosed most doctors just thought that I had a bad yeast infection) . I get some relieffrom taking Elavil but not nearly enough. I am a single mother of a beautiful daughter andI feel like her life is so limited by how awful I feel most of the time. I can't do thenormal everday things with her that I used to...sometimes just walking with her is enoughto really aggravate my symptoms. I hate this so much. It does help to know that I am notalone. Thank you so much for sharing your stories...it means so much! I have had adifficult time of finding a doctor in my state that specializes in treating women withvulvodynia . 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 jobbut 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 totallydisabled from IC and Vv and now I have Sjogren's. I was approved for Soc. Sec. after beingdenied twice and was about to appear before an ALJ when my file was intercepted by areviewer who immediately approved my disability and even back dated it to when I beganchemotherapy (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 timeafter the DMSO. I can't remember where I saw the following web site listed, if it was thisVv group or the other one (VPD), but I recommend everyone check this out. It is calledINVISIBLE 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 (wellmeaning) 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 andrefreshing. No one knows how much we suffer unless they read all the guestbook entries andjoin the egroup. I do have a suggestion: GET EVERYONE'S PERMISSION AND PUT ALL GUESTBOOKENTRIES INTO BOOK FORM AND DUMP IT ON CONGRESS'S LAP. I have never read so much sufferingin 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 fundingfor research and better treatment options. In our country our gov't approves whichdiseases 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 totallydisabled from IC and Vv and now I have Sjogren's. I was approved for Soc. Sec. after beingdenied twice and was about to appear before an ALJ when my file was intercepted by areviewer who immediately approved my disability and even back dated it to when I beganchemotherapy (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 timeafter the DMSO. I can't remember where I saw the following web site listed, if it was thisVv group or the other one (VPD), but I recommend everyone check this out. It is calledINVISIBLE 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 (wellmeaning) 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 andrefreshing. No one knows how much we suffer unless they read all the guestbook entries andjoin the egroup. I do have a suggestion: GET EVERYONE'S PERMISSION AND PUT ALL GUESTBOOKENTRIES INTO BOOK FORM AND DUMP IT ON CONGRESS'S LAP. I have never read so much sufferingin 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 fundingfor research and better treatment options. In our country our gov't approves whichdiseases 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 aftervaginally delivered my daughter in June of 1998. Now, all the time. Also chronic bacterialvaginosis and yeast infections. Nothing helps. Redness, itchiness, pain. Dr. called it"chronic pain syndrome". Had laparoscopy in May, 2000--StageII/IIIendo--cul-de-sac totally obliterated. Pain has improved, but even taking alleve, cbcps andcelebrex, 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 anupdate. I began the problems with VV a little over two years ago. Thru the use of Elavil and nojeans, 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 partof this? You get so used to it, that you don't even realize when something else ishappening. I took vacation in early July of this year. I had been hurting more than usualfor a few days, but that day flying and later being in scorching heat, made the pain muchworse. 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 thetissue. I knew it was a bladder infection (because there was no way it could be comingfrom the uterus, as I've had a hysterectomy). Went to ER (what a fun way to start vacation), and got checked and got antibiotic andDiflucan. After completing medication, I saw my doctor at home (by then I was back fromvacation). My urine tested fine. Well a few weeks later, I noticed some pain and an unpleasant odor "downthere". Went back to doctor - another bladder infection. I had been taking good careof myself, and couldn't believe this was happening again. So back on antibiotics again andDiflucan. See, one of the things I find the most frustating about this is you can be sickew/a bladder infection and not even know it because you're used to having pain. I'vedecided 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 becultured. Many times the "dip test" that they do in the doctor's office won'tshow 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 itis high in yeast ... please go to the Karen Tripp web page - I'm not sure of the exactaddress but if you search for "Karen Tripp" it will come up - She cured herselfof "candida" by eliminating all yeast and carbohydrate type products ... We mayhave 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 findthem interesting to our disease... I have started the Candida diet and I am starting tofeel much improved (And i have the classic case of VVD) ... I have ordered some antifungal herbs called SF 722 (It's called something like that - you'll see the name on KarenTripps's and other candida web pages) and some acidophilus. I will begin taking that soonand 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 bladderproblems... Good Luck all... DD
CommentHello Everyone. Back in one of the previous guestbooks I told all of you that afterseeing Dr. Sobel in Michigan I started feeling normal again. He put me on 50mg of Elaviland Diflucan once a week. I have felt completely normal for the past 3 months and untilrecently did not have any pain. I am now starting to feel the pain again. It started tohurt after urination in two spots where I have it the worst and then last night it startedhurting all over again. The only thing I can think of that I did different is start takingSlim Fast due to the weight the Elavil is putting on me. Could this product have Soy init? I read the label but nowhere did it mention Soy and then I remembered some of yousaying that it isn't always listed in the ingredients. Does anyone out there happen toknow if this is one of the ingredients of Slim Fast? Anyway, I have stopped taking it andam waiting to see if there is any improvement. The only other thing that might beattibuted to this is that I started drinking pop again. For awhile there I quit drinkingall pop except Sprite and only drank juice. So I'm back to that as well. It is just sodepressing having this pain back again. I have felt so wonderful these past few months. Iwas able to play softball again and to work out at the gym without any pain. I don't knowif 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 Uof M and they prescribed a cream made up of Elavil and a muscle relaxer. It has made adifference for me and no weight gain. I am only on a very small amount and was told Icould use it more often. I will keep you up to date. They use a pharmacy in Southfield that creates thismedicine for them.
CommentMy story is the same as the many I have read on this guest book I am sad to say. I havehad vestibulitis for 12 years, and was correctly diagnosed after 8 of those years in 5minutes by a nurs practitioner. I think I saw 6 different doctors,tried severalantifungals, and became desperate. I have never had an enjoyable sexual experience--guessI 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 2wonderful children to be thankful for--they were very worth the pain I went through to getpregnant! My symptomsw started immediately following a course of antibiotics for asinus/ear infection (ceclor). I came to find that Monistat made me worse-you all know therest of the story. Has anyone had good results with calcium citrate, guafenisien, orglucosamine. When I first started them I was symptom free for a week (WOW), but now I seemto be getting worse and can't tell what is what or what helps and what doesn't. Any ideashow to meet sensitve caring men who don't like intercourse (YAH RIGHT). Please help. I amso glad I found this website-guess it's not all in my head, cause "It sure looksnormal down there." Thanks,Lisa
CommentHi there, I'm 35 and my VV symptoms developed after I had a hysterectomy, maybe due todrastic lowering of estrogen levels. I have tiny bumps around the vestibula and I alsohave very low abdominal pain that seems associated with the vaginal pain which is insidemy vagina and around the entrance. Does anyone else have these symptoms? And anysuggestions which might help. Thanks
CommentHi, I forgot to say that filter coffee seems to make my symptoms worse, anybody elsethe 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 isthat you will not find succinct, comprehensive information here on the guestbooks. Onething I did was to join the Vulvar Pain Foundation. I ordered every one of their backissues 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 atvulvarpainfoundation.org Their website is nice, but the REAL information is in thenewsletters.I was tested by their research facility and found that I have abnormal amountsof oxalate in my system.(ANYTHING can set this off, trauma, surgery, antibiotics, ornothing in particular...) I have begun a diet avoiding the high oxalate foods, and takingsimple 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 nofinancial output here, no one making any money....just helping the women. Another thing Idid was to find out about pelvic floor dyfunction, and although I beleive Dr. Glazer is onto a solution for many with the relaxation/biofeedback, there are others out there who domore with physical therapy and INTERNAL massage that is extremely helpful for those withnerve damage or entrapment. I am seeing a wonderful PT who is focused on the mechanicalcomponent of my pain, and we are making real strides. Please remember, there are MANYcauses, and many things to try. Be very careful about long term topical steroid use, its afirst choice for many dr.s and can be devastating. My case seems to be two fold, and Ihave had my bowel tested and have found exessive glabrata yeast, so may be THREEfold. Whatworks for one may not work for another. I was one who would try anything I read here indesperation. Be careful about trying someone elses cure. And remember that those who aretrying to help have their own prejudices. My physical therapist is leery of the diet andsupplements I am taking. I talked to Dr. Solomons of the VPF's pain project, and he isdoubtful about the PT in my case, because of the lab results. These people are experts ontheir 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 youhave pelvic floor dysfunction, find out who is best and closest to you who specializes inPF inujry or dysfunction. Ask you gyn if they know what glabrata yeast looks like, and iftheir microscopes are powerful enough to see them. Ask your gyn to take a look under thatbig magnifing mirror to see if you have fine tears or papercuts in your skin, Estracecream could help you. Chart your pain, is it cyclical? This is a big clue and can defineyour diagnosis as well. I am still in pain, although something is working, I actually hadsex with my husband for the first time in many months, and am not regretting it forincreased pain. My heart goes out to you all. Don't give up. collect information, you canfind 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 doconcur that they are very good resources. My question to "C" is, are you asufferer 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 havewondered how the diet would be of benefit to me. When we post to this site it would bevery helpful if we were more specific about the type of symptoms we are experiencing. Icheck this site almost everyday and it keeps me feeling somewhat positive that all of usare 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 formyself yeast was the primary triggering factor. I have/had VVS, I had pain at the base ofthe opening of the vagina and burning up the insides of the labia. I now only have milddiscomfort along one side of my labia. I have been yeast free and sugar free along withantifungals and antiparasitic drugs for 13 months and can now enjoy sex with my husband. Ikeep hearing over and over on this site about yeast infections, antibiotic use, bacterialvaginosis and endometriosis and interstitial cystitis all connected with this disease. Ihad all but the last, although I did have urgency when the VVS was at its worse. I havewritten before about the doctor I see in Michigan that treats yeast related illnesses. Hetreats all these problems because he believes and I do to that they all stem from yeastand parasites. I'm glad to hear another entry talk about cleaning up our diets. Get rid ofthe processed food, it's making us all sick! When I can collect the research on theseother parasites, I will be back to share it. Meantime take care all of you and may Godtouch those of you with young children, you are still a great Mom with a lot to offer yourkids. And they love you no matter what.
CommentFor Jean, I have general vulvodynia, with 24/7 pain. My pain began with burning andstinging and now seems more sore and bruised than anything. I have zero problemsinternally. I can use tampons, etc, and have no lubrication problems whatsoever. My tissueappears perfectly normal. No redness, or sores, now, but at the onset I did have slightredness and a couple of "almost" sores. One of the most interesting things I hadever read in one of the VPF newsletters was that of accounts of women who have had to havetheir bladders removed, for whatever reason, and their vulvar tissue STILL experienced theburning and stinging pain. So for some, the mechanism is obviously internal, not having todo with urine on the skin. I too check this site frequently, and the most dishearteningthiing is that it seems like lots of women here are stabbing in the dark. I wish somebodywould 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 calledVPD (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 emotionalsupport. I urge you to check it out. C C
CommentC and Jean, I agree with everything you both said. When I originally posted on thissite, I tried to be very specific about my symptoms, so that my suggestions wouldhopefully only be heeded by women who seem to be in the same boat. Vulvodynia is EXTREMELYbroad. It is necessary to be more specific when you are recommending treatments. I had posted before that I had responded well to antibiotics, specifically Augmentinand Doxicycline. I was miraculously better during the course of meds, just to becomehorrible after stopping. I finally went over a month ago to Dr. Attila Toth in NYC to getan I.V. of antibiotics. I feel much better. Previously I could not stand to have my vulvastimulated digitally, and now it is no problem. I am very hopeful that I will continue tostay 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 andinflammation 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 painfelt like rawness with less elasticity. Sometimes I felt like I had cut glass there oracid running accross my vulva. I alsi at times had burning pain on my skin, especially mythighs. 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 manycauses, so little comprehensively written. I want to just make one more point about theoxalate theory: Those who were helped or cured by this method, DID NOT ALL HAVE THE SAMESYMPTOMS. Every BODY responds differently. Some had itching, others severe redness, othersnormal looking skin, others open sores. You cannot make your own diagnosis by comparingsymptoms. Seems like you should be able to, but it is too simplistic to do this The worstthing any of us can do is to hide this problem, this horrible pain. Too embarrassed to sayvulvodynia? Say "pelvic floor pain" use the word chronic, too. For the sake ofall those who come after us, for our daughters, do not pretend there is nothing wrong. Todo that hurts us all. C
CommentAlthough I agree it is dangerous to self diagnose. I went through 20 doctors who didnot believe it could be a bacterial infection, when I strongly believed it. I was sickover 6 years before I found a GYN and a rheumotologist who agreed with me, but even theydid not know what to do. How much meds? They are the ones who helped encourage me to seeToth. The problem is the vulvodynia community of doctors and specialists are of the mindthat it is NOT and ongoing bacterial infection. When I have posted on this site before, Ihave received emails from women who seem upset I would even suggest it. I have alsoreceived mail from women that completely agree. Most of the women I talked to who agreehave most or all of my symptoms, started the symptoms with a new sex partner, and manyhave found that certain antibiotics "cure" them only to have them feel sickerafter a few days after stopping, then within a week or so the pain levels off again. Manyinterpret this as the antibiotics not working or leaving you sicker. I argue that theantibiotics were WORKING. That you feel sick AFTERWARDS because the meds were not in highenough doses or not for long enough. Remeber it is important to take antibiotics in theirfull prescribed course to kill off all the bad bacteria. I think the few times doctorsprescribe 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 ofthe treatments I tried, because I know they are consistantly hitting doctors that say itis not an infection, they keep dumping drugs into and onto their bodies that are notworking, and no one is listening. I will listen.
Comment
CommentI went to Boston to see Some Dr's who have knowledge about vulvodynia They put me onpremarin cream, testostorone cream, acidophilous, L- Arginie and lidocaine cream. Irecommend these dr's to anyone. Once again, I thank Tonya who has given me the the dr'sname. Anyone who would like to go see them email me and I will give you their info. Theyare out of Boston, MA. It has been since May that I have been using the Testostorone & premarian cream. Istoped using the other meds like after a month. I use the testostorone cream for sex andit really helps. The dr also had me get off the pill cause my testostorone levels werelow. I have not had them checked yet, but I believe that the pill has caused me to havethese problems. I was on it for a long while for regulating my periods, then got off of itand 6 months later I had this pain. Has anyone else tried these creams? Vagisil lubricantalso helps for the pain.
CommentI thought Jennifer's comments about this possibly being a bacterial infection wereinteresting, because that was what I originally thought when I first visited a dr. forthis condition. There is a theory about interstitial cysitis also being an infection withan as-yet unidentified or hard-to-culture bacteria. However, there is also acounter-theory that, because antibiotics have an anti-inflammatory effect, that is whysome people feel better taking them, only to relapse when they are discontinued. I havealso 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 takingantibiotics. I have also heard that having TOO MANY lactobacillus--i.e., "goodbacteria"--can cause symptoms of an infection. Again, antibiotics might help this byreducing the number of these, but might leave the person vulnerable to yeast or anotherbacteria. I'm afraid I'm raising more questions than I'm answering, but I'm glad to seepeople discussing various theories, because sharing what we've learned can be veryhelpful. (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 inthe guestbooks. When I first noticed my symptoms, I was red, raw, itchy, and had intenseswelling down there. When I had to urinate it was like pouring salt into paper cuts. Ithought 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 couldtell me what was wrong. I had one doctor ask me if I had been raped (bless her heart, butI hadn't). Anyway, a lot of doctors thought that I was having psychological problems, butI wasn't (no, I was, because I didn't know what was wrong with me). I felt horriblebecause I was having a hard time mentally, but at the same time my doctor wanted to referme to a psychologist, yet my career is psychology. Funny isn't it? Anyway, I know myselfmentally. I knew that wasn't the problem. Thankfully, I had one doctor who told me whatwas wrong, vulvodynia. I feel bad because I think soy is the culprit. It does seem toosimple. However, if I had yeast overgrowth, wouldn't it show up? I've been checked so manytimes for yeast and bacteria, but there is nothing. I know everyone is different. I wouldstill like to know if anyone has been feeling better by eliminating soy? I am sointerested 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 basicfoods. So far, I've been doing extremely well. I just wanted to hear your comments andaddress the question from 8/26/00. If in the next year, this soy thing doesn't work forme, I'm glad that this site is here. It sounds like a lot of women with vulvodynia have alot of ways to make themselves feel better "down there". There are a lot of goodideas. Thank you, Jessica
CommentI placed an entry approx 1 year ago regarding my successful treatment of vulvavestibulitis that I had been suffering for approx 8 years. I reached a stage where I couldno longer have sexual intercourse as the pain made me cry. I, like others was incorrectlydiagnosed which delayed corrrect treatment for many years. Finally and thankfully I was correctly diagnosed and underwent treatement torehabilitate my pelvic floor muscles. I was advised that unstable pelvic floor muscles cancause the vulvar area to become hypersensitive inflamed and painful . This treatment forvulvodynia allowed me to to heal these muscles by strengthening and stabilising themuscles 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 muscleexcercises recommended after having children. I was sure my condition was something to dowith the soap I was using. When I first saw a reading of the muscle's strength through EMGI was surprised how low the reading was. And then, in the normal relaxed state, thereading 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 verydifficult to find the time with two small children. It was very encouraging from the startthough, so I was motivated to continue. The article I read was by Dr. Glazer (New York), but obviously, I did not see him, butanother 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 thebacteria you find in the vaginal canal you will find in the urethra. I think it is ourgenetic make-up that determines where the pain is; rather, certain parts of the body mayreact to the bacteria while others don't. That is part of the reason that I think thatthis may be why it is difficult to identify the antagonistic bacteria. What if it isconsidered normal flora, and in most women who harbor it they have no bad symptoms? We seethis 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, andthen 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 somebelieve 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 othersbacterias 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 abacteria that was resistant to that so he started me on Mefoxin first. He had seen alsothat I had some yeast living up there, this is one of the reasons he was reluctant to giveme the AS because it is a penicillin, which allows for yeast growth (not all antibioticsare the same in terms of giving space for yeast to grow). But, in the end he switched meto the AS because I was not feeling much better on the Mefoxin. He trully worked as apartner with me, admitting that even he may not be isolating the exact culprit of thepain. I think it is important to know that the medical community at large will never say itis bacterial unless the bacterium is actually identified, or hundreds of women are curedon 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 couldpossibly 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 lookfor yeast under the microscope, and do a culture for yeast first. Then while taking themeds also take diflucan every other day to keep the yeast down, otherwise you won't knowfor sure whether you feel better or not. This is not randomly taking antibiotics YOU ARESICK!!! For a long time I might add. The problem with my little experiment I justsuggested is that it will probably not cure you, you probably need an I.V., like long termLymed Disease sufferers. But you will see if you respond favorably to the antibioticbefore you go through the time and expense of an I.V. Also, you will feel much worseshortly after stopping the meds for a few days, and then it will go back to your usualpain. 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 womenin the Tacoma Washington area. I have been seeing a great PT which has been very helpfulbut really need a knowledgible physician. My internist is great about working with me andreading the information I bring in but I am the first vvd patient he has seen. I wouldappreciate 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 seesomeone, but several vvd sufferers in the area go to Sylvia Berry at the UW Women'sClinic. She's a nurse practioner that specializes in vulvodynia. Unfortunately, she onlysee patients on Fridays, so it takes forever to get an appointment. But I think it wasworth 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 sweetfruits, things with yeast in them. I take acidopholus, vitamin C and e. I drink lots ofwater and eat lots of green leafy vegetables. I took medicine to kill parasites in me. Ifeel 70% better and it has been a couple of months to get here. I still have troublearound the end of menstruation. A book that really helped me was "The YeastConnection". It is by William G. Crook. Also, The Candida Wellness Center will mail afree book. 1-800 869 1613 or 1800 644 1612 All of my doctors said that it wasn't a yeastproblem and did biopsys and all. But, the book explained a lot of things about yeast beingin your intestines and carrying on to the bloodstream. Please do not think this is aquack. It has really helped me and I want other women to be helped by it. I am in no wayconncected to the writers if these documents. If you don't believe it, will you at leastpublish 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 ahysterectomy sometime in my 40's. Looks like the time is near. My GYN and I are planningthe surgrey in the spring of 2001. My uterus has dropped quite a bit in the past fewmonths. I have asthma and cough alot which may be causing it to drop more. I have beenleaking urine from my bladder due to the pressure. For about 8 months I have been havingmore burning from my vestibulits. It's just been in the past week that I have connected itwith 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 veryirritating for that sensitive skin down there. I have extremely sensitive skin everywhereanyways the genital area not excluded. This problem of leaking urine isn't the whole of myproblem with vestibulitis just one of the contributors. Maybe this will help some of youwho may be experiencing burning and leaking of urine. It's not something that I hadthought of to be one of the contributors until I realized this past week that I don't haveto 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 checkthe site nightly since I found it back around the 4th of July. But no one has written insuch a long time that this is the 1st time I've checked in a few weeks. I,ve gotten lotsof info from this site and you ladies. I've tried a few things that some of youreccomended 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 thewaiting list. My GYN said they would not even give her an estimate on how long I wouldhave to wait. If anyone has gone to her, please give me an idea of how long you waited tobe 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. Ihave the 13th guestbook in my favorite places so it would be easy to find. Didn't dawn onme that a new book had been started. Just finished reading or at least skimming most ofthe entries. Kind of worries me when I've read that women who had hysterrectomies eitherseemed to get vulvodynia or things didn't get better after the surgrey. I am worried thatit couldmake matters worse. But I am having so much back pain and abdomanial pain andcramping and other problems. Might help one problem just to make another one worse. Seemslike 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 pleasetake me at an early age. I've already lived the past 20 yrs with this I don't want to liveanothe 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 upcomments. I am on my third year with this disease. This past year, I spent 6 months in NewZealand. My regular routine has been application of vitamin E oil daily for bothpreventive and healing measures. Life w/ the E oil is better than before BUT it is not aguarantee. While I was in New Zealand, I did not have a single flare-up! This was by nomeans a vacation being there - I was under a great deal of stress for weeks on end andaveraged 4-5 hrs of sleep a night sometimes for extended periods of time. My E oil whichnever leaves my side was put in the back of my closet and forgotten about. Since myreturn, I have had a really bad flare-up (during a stressful few days) and there is thepresence of both cuts and pain. I have been paying a great deal of attention to the soyissue. 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 thefoods 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 withunderstands and does not take me down the psychological path...I have been through enoughDr. trauma already (i.e. being misdiagnosed). My best to you all as always - we are realpeople and not alone.
CommentHi, Has anyone ever investigated varicose veins as a cause for Vulvodynia? I haveenlarged veins on my upper inner thighs and I'm wondering if there could be enlarged veinsin my left labia (which tends to feel swollen and sore) and up into my vagina where I havea burning sensation. I wonder if the veins themselves or just poor circulation because ofthem 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 thesesymptoms were "not in my head" as I was told by my family doctor, but they werereal and treatable. It's too bad more G.P.'s don't know more about these symptoms - theyjust simply have to look it up on the computer, just like we all did. It must be too muchto look up info such as this. But to tell me that this was all in my head was the worstfeeling of dispair and insecurity I have ever felt. Thanks to such sites as these, I feelbetter knowing that there are people who care and are willing to help. Thanks.
CommentLinda, regarding your comments about varicose veins, I have acquired something sincethe early months of vulvodynia (2+ years ago). On the front part of my left thigh, I nowhave many of those purplish to reddish spider veins. I never had any of these before, andit's interesting that it only happened on the left thigh; my right thigh has none. When Ifirst got vulvodynia, I'd sit real strange (leaning to the left to take pressure off thevulva). Often, I'd sit w/one of my legs under me because I couldn't tolerate sitting formore than a few minutes at a time. I thought maybe the spider veins occurred because ofsitting wierd, but after reading your comments, it's made me curious. Well, just anotherof 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 havethe same thing. I don't know why I leak like this; my estrogen levels test out fine at thegyn. 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 inMiami Beach, FL. She considers it possible for vericose veins in the vulva to be anantagonist 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 alittle overly sensitive near my clitoris.
CommentI have been suffering from vestibulitis for about 7 years and and was only diagnosed aweek ago after repeated visits to various doctors. I also have had a cystitis problem foreven longer. That is kept under control by amitriptyline, however the pain fromvestibulitis is no better. I hope that by reasearch and web sites such as this, sufferersand their partners will be able to lead a normal life. Thanks for the web site and keep upthe good work.
CommentJust to add to the last couple of emails; I don't know if there is a connection butduring a laparoscopy 3 years ago, I was diagnosed with varices (varicose veins throughoutthe pelvis) I also had endometriosis. I had a hysterectomy a year ago and I now I havevulvodynia.
CommentJust to add to the last couple of emails; I don't know if there is a connection butduring a laparoscopy 3 years ago, I was diagnosed with varices (varicose veins throughoutthe pelvis) I also had endometriosis. I had a hysterectomy a year ago and I now I havevulvodynia.
CommentHas anyone tried taking Guaifenesen(?) for vulvar pain? I have just started taking itand have had some good days. Just curious of anyone else takes it and how it is helpingyou. I will post my name and e-mail address when I see how this protocol works. In themean 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 5years ago due to endometriosis. The vulvodynia started 3 years later. As I've thought backthough, it was showing the infant stages of the disease maybe a year or so after thehysterectomy. It was a bladder infection, yeast, and bacterial vag. infection that broughtthe vulvodynia to a head. But I do remember sometimes getting very raw when wearing jeansand feeling sore during sex before this. So again, it makes me wonder about thehysterectomy and endometriosis being major contributing factors, and also wondering howmuch 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 usingMagnets in a previous guestbook and so I decided to try them. I have been wearing them forabout a week now and haven't really noticed any difference. Of course I had differentsymptoms then the other girl had. I have vulvar vestibulitis and only notice pain when Ihave sex with my husband. I used Amitriptilyn for awhile but as soon as I got off the paincame back. I am very interested in the theory that this could be gene related. I do haveproblems with nasal congestion (I get sinus infections regularly) and also the women on mydads side of the family have problems. My grandma had a miscarraige and pain with sex whenher uteris tilted. One of my aunts had a miscarraige, irregular bleeding, pain and had tohave a histerectemy. My other aunt had cronic yeast infections since the age of nine andhas pain with sex when her uteris tilts. So I think that maybe female problems runs in thefamily. I wish that someone was doing research on this. I believe that my problem stemmedfrom have bacteria vaginosis 3 time and cervixitis all within 2 months time. I think thatmy vestibule glands became inflamed and now the inflimation just won't go away. I feeldeeply for all of you who have this worse than I do. At least mine is bareable and I don'tknow anything is wrong until I have sex. I hope that there is an end to this soon. And Iagree with the person who said we should dump these guestbooks on congresses lap so theycan 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 foreverything, tried everything. I was just wondering if anyone had any ideas about howgaining weight contributes to this problem. I've gained quite a bit of weight since it allbegan, 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. Iknow that is a terrible thing to say, but I I think it would be better than thissuffering. Will it ever end?
CommentI believe that I suffer from vulvodynia, and have to ask this question: does anyonehave severe itching (resembling a yeast infection)and burning with urination the day afterintercourse? I also feel "battered and bruised" about the sit bones, and aroundperianal areas. It just feels sore and raw to the touch. Please let me know if anyone elseexperiences this after intercourse--I realize that we're all not able to do that becauseof the extreme pain, and I hope that you don't take offense to my questions. Thanks somuch.
CommentPlease ladies ... Knowledge is power ... As I read all the entries I can't help but think how much our problem is similar toCandida. Please search for "Candida" on the internet and start reading thesites. The Karen Tripp webpage is very valuable. If you read mothing else on Candida - justread 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 theycan 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 theyare allergic to Soy? Maybe this is an allergy to some food and this is how our bodiesreact to it. Some allergens cause sneezing others cause rash, others cause itching, otherscause burning....do these sound familiar?? When I was young, I went to an allergist andfound 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 awhile. then when I was 14, I started having yeast infections, but I was no longer thakingthe allergy shots...I don't know, maybe I am "stabbing in the dark", but readingall that you guys put in here helps alot. Maybe my input will help someone else too! Letme 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'tthink 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 wouldshow eosinophils in the tissues of their sinus and nasal passage. Doctors LEAPED at thatsaying it must be my soap or something in the air. For a while I bought into it, but inthe back of my head it made no sense to me. My deep redness, inflammation, and pain, wasthe worst at the entrance to my vagina on my vulva. If I was allergic to my laundry soapit would have been the outer part of the lips I reasoned. I do know that allergies candevelop over time, but I had never had any allergic reactions that I knew of. I do feelthat certain foods can aggravate the system, or even make urine more acidic, but I believewe find some relief from changing our diets because we are taking away an aggravatingantagonist. 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 makeit hurt. Anyway, since my doctors saw the eosinophil I went for both dermatological skinpatch 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 neversaw any difference in my pain anyway. I should mention that I finally spent a day at theNIH medical library, and eosinophils can be sent by the body for other invaders such asbacteria 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 somethingfrom 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. antibioticsdid the trick. I know I am just another posting on here, but those of you that complainabout infection after infection, and then eventually developing vulva pain, have you everthought you never really got rid of the infection? That this is the way the infectionprogresses.
CommentI have been on your registry for a couple years but unfortunately the phone company haschanged my area code from 612 to 651. I couldn't find a way to correct my info, so Isubmitted 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 thepain (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 becauseit was too painful and so i went to a few doctors who diagnosed me with psychologicalproblems associated with sex and vaginal infections. i was really lucky to find a doctorwho 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. ithought i was the only one for a while, i mean i KNEW there were other women out therewith 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 agirl 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 TALKINGABOUT.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 KNOWOF A DR IN STL THAT KNOWS OF VULVODYNIA?
CommentHi, this is my first time writing on this website. I have been struggling withvuvlvodynia for about 5 plus years. I have been taking Elavil to help with the pain but amstill in pain almost all the time. About 3 years ago I also developed incontinence. Itused to only happen when I laughed or coughed. Now it happens all the time. I had a babyin December1999. Before my pregnancy I was taking 50mg of Elavil a day. During thepregnancy the pain got much worse so I had to increase my dose to 75-100mg a day. I wasapprehensive 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 somecomplications, my amniotic fluid became too low and I had to be induced. Now afterpregnancy, I am in pain constantly and have increased my dose of Elavil to 125mg a day. Itisn't helping very much. We want to have another child but I can't bear to be in more painthan I am now. Has anyone developed incontince after being diagnosed with vuvlvdynia? Anysuggestion would be helpful. Also I just found a dr. in my area who was on the registry. Iam 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 emailme, I would like to find out who your doctor is and what they say to you; I still go tosee 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 thepain you describe 24/7. Those "sit down" bones that you describe throb and acheconstantly, like right now due to sitting at the computer to long. I am 46 now and havenot been able to have sex or arousal in any way, shape, or form as the pain is so hideousit 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 itlooks like I'll be that way for the rest of my life. The beat up, battered, bruisingfeeling you described is both "normal" for IC and V V, with or without sex. Thesex just makes everything worse. I take opiate narcotics for the unbearable pain and I amtotally disabled and unable to work at all. You can try to get a prescription forLidocaine Jelly 2% or Lidocaine Ointment 5% to numb the hell out of every orifice in yourbody before you engage in sex- but in my case when it wears off, the pain just roars itsugly head even more with a vengance. You can't trick IC/V V. Give that a try and get aprescription for opiate narcotics (stronger than useless Darvocet or Vicodin) and see ifthat helps. To Callie: There have been a flood of articles about Pelvic CongestionSyndrome on all the women's sites on the Net lately. I think Dr. Glazer or Perry even hada posting about this. Pelvic Congestion is definitely caused by varicose veins in thepelvic area and they can do surgery on these to relieve the symptoms. There are numerouswomen's health web sites regarding this particular topic. To Maria Teresa: Yes, Neurontinis gabapentine. If you don't live too far from the UK, you might try to see a doctorthere. 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 apamphlet on IC in Spanish, but I don't think they have any translated into Spanish aboutvulvodynia. There are software programs you can buy that can translate English informationinto Spanish. I hope this helps. Buena suerte (la familia de mi madre viene de cuba ypuerto rico). Laura RN (enfermera)
Commentbefore you even think about taking oxycontin check this site outwww.oxycontinNightmare.homestead.com
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CommentWow! I am so excited that I stumbled onto this website. I was researching Estrace andhere I am. I have been having major pain with intercourse for the last two years. Ofcourse this happens to be the first two years of my marriage. It is really awful and hasbeen a TERRIBLE strain on my marriage. No one could tell me what was wrong until a doctorat Planned Parenthood two weeks ago thought that I might have vestibulitis. I had nevereven 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 sexhating 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 ofsomeone with the dissapperance of my sex life. Sometimes I feel like I am not a real womenanymore and have noticed this carrying over into how I feel about myself even in the mosttrivial areas. I am really lucky to have the husband I do, but at the same time I feelguilty that his sexuality has been dampened and he didn't even do anything. Does anyoneelse feel this way??? We really want to start a family and on top of sex hurting andmaking it a chore rather than a blessing, I am scared to take Estrace because it hasexplicit warnings that pregnant women should not take it. My regular gyn told me that itwas fine (topical use only) and would not cause birth defects but I am skeptical. Doesanyone know about this? Thanks to whoever started this site, I am sad that there seems tobe no cure, but just knowing that I am not the only person that feels this way makes mefeel much less isolated. I am sending a a huge hug to all of you who have written, youhave know idea how your stories lifted this load of worry, depression, and isolation. Takecare.
CommentI'm just wondering if there are any information as to what type of symptoms are mostlike to be helped by biofeedback. I have constant burning in the vulvar area, as well asburning when I urinate or have a bowel movement. Sex is out of the question. Has anyonewith these specific symptoms been helped?
CommentI'm just wondering if there are any information as to what type of symptoms are mostlike to be helped by biofeedback. I have constant burning in the vulvar area, as well asburning when I urinate or have a bowel movement. Sex is out of the question. Has anyonewith these specific symptoms been helped?
CommentI first got vulvadynia about 4 years ago. It took many doctors and treatments beforethey realised what I had. When they said it was incurable I cried for about 2 days. I hadthe vvd for about 1 year and a half, when I split up with my boyfriend it simply wentaway. I have now been with my boyfriend for about 1 year and this horrible thing hasraised it's ugly head. I don't want to go through this again. I strongly think it's verysexually orientated for me. What I can't figure out is how can I not have it one day andthe very next day I've got this terrible burning which makes me feel like bawling. Pleasesomeone 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 ishow 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 finallyfound out last week from a uro-gynecologist that I have VV after going back and forthbetween gynecologists and urologists for months. I am sure there are SO many more peopleout 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 atopical cream and see if that helps before discussing other treatments. I can tell fromall the people on line that many of them don't seem to find relief from those things. Iknow to wear cotton, use unscented things etc.. I have always had allergic problems withperfume etc.. so I don't use any. I just wonder if we will ever have some relief fromthings. I am a teacher so you can imagine how difficult it is to run to the restroom inbetween classes. So, if anyone has advice for somebody who has just started to trytreatment, please let me know. Thanks!
CommentIn going through guestbooks and reading those who take Elavil, has everyone gainedweight? How any milligrams a day were you taking and how long before you started gainingweight?
CommentHi all, I have been living with Vestibulitis for a year. Like many of you I have triedall of the creams, steroids, and home remedies known to man. Nothing worked. I was inpain, unable to have an intercourse with my husband. I would have flare ups twice a month(ovulation time, and menstruation). My doctor suggested I use amitryptiline (Elavil). Irefused until a month ago. I decided to try it. My doctor started me with 25 mg,increasing the dose by 10 mg each week. I am up to 65 mg now, and am PAIN FREE. It reallyWORKED for me. I am able to live a normal life with my husband now. If some of you havebeen diagnosed with vestibulitis (different from vulvodynia), perhaps it would be worth itto discuss taking this drug with your doctor.
CommentTo Shell try using crisco oil or olive oil when having sex instead of lubricate. It'snon drying and natural and doesn't have any chemicals. Sex diffently is an irritant. Seeif this helps. I now it sounds weird, but it does help. My husband thought I was nuts whenI told him my gyn recommended this, but he was suprised how well it did work. Of coursedon't have sex when having symptoms, it will just make matters worse. Good luck!! Chris
CommentI've been suffering with irrititation, burning after sex and itching usually for theweek before and during my moontime. My partner is very understanding, in fact he read theentire current guestbook scanning for similar symptoms to mine! Still, after not quite twoyears I've had more than I can stand.I like the suggestions of natural treatments, as Ihave a sense that this could very well be a PH thing. Some things that I have tried thatprovide some relief: direct sunshine on the affected area for a 1/2 hour daily. Drying outthe sore bit seems to help. Someone mentioned irritation from discharge. My partnerexperienced some skin splitting under the head of his penis one time, when he did not washafter some middle-of-the-night-nookie. Since then, he's kept clean and not had arecurrance. This could be a clue. I did start experiencing this crap after a few yeastinfections, for which I atypically used an over-the-counter treatment. (my usual remedyhad been acidophillus/bifidus milk, increased water intake and sunshine) I don't havehealth insurance and don't trust the medical proffession generally. My planned parenthoodNurse practitioner has been my only source of info. Does anyone else suspect the pill? Itried changing mine, but am wary of going off the altogether, as we have 5 daughters, andthough we dearly love them, that's enough! One more thing, I have recently read that hemptea works well as a topical treatment. Leaves or buds, steeped in hot water. Will updateyou on the efficacy of that method. Goddess Bless!
CommentTo the person who just wrote about the Elevil success, I've heard the side effects of the drug are sleepiness and lack of sex drive or abilityto have an orgasim. Is this true? What symptoms if any have you experienced taking thedrug and how long have you been on it? Thanks for any help. Anon
Commentmy doctor prescribed me Ovestin Cream, and i havent seen it mentioned here.... or i'vemissed it, or it's called something else where youse are at. i was just wondering if anyone else has tried it? it gives me instant relief fromitchiness but i'm only supposed to put it on twice a day. (i'm also on calcium citrate pills and the low-oxalate diet)
CommentTo Lisa, Try pouring warm water on the area while you are urinating. It will dilute theurine and not trigger the pain as much. Also, drink lots of water. It seems to help me. To All: I wrote about a month ago about a new treatment from U of M hospital. It is acream made up of elavil and a muscle relaxer. I will get the exact ingredients and post itlater. I am doing alot better. I was afraid of the elavil pills because I heard of weightgain. I have not tried intercourse yet, but I do not have the pain during my cycle like Iused to before using this cream. I only use it morning and night, but I the doctor told methat I could work up to a larger dose. The only drawback is that it is made by a special pharmacy and I am not sure yet of myinsurance coverage, because I have to submit it to them for reimbursement. I am willing topay for it myself to eliminate my pain. It was $65 for a small tube, but it looks like itwould last me at least 4 months, because I don't use alot each time. I will keep you up to date. Take care.
CommentTo Lisa again: Get a prescription for 5% xylocaine (lidocaine) ointment. You can use it as often asyou need to. You apply it to the painful area and it numbs it. It really works great. Many women have said they use it before intercourse, but I have used it just toeliminate the daily pain. And again, drink lots of water. It really does help. Hope this helps you out.
CommentI am a vulvodynia sufferer and I live in Columbus Ohio. Can anyone refer me to aknowledgable doctor in Columbus Ohio who treats this condition? Thanks for your help and I am continually praying for all of my fellow VulvodyniaSufferers
CommentThere is a survey for women suffering with vulvodynia or vestibulitis. Please take afew minutes and fill it out. You will find it atwww.geocities.com/vestibolite/intro_survey.htm
CommentI noticed that some people commented on Acutane the (acne treatment). I am not surewhat that is or what is in it, but I found it strange because my whole problem started theday after I went to the Dermatologist for facial pimples. He gave me samples of Benzac ACwash and Cleotin T-Gel (an antibiotic gel). I started using them immediately and the nextday I had major burning and swelling down there. Of course at first I thought it was ayeast infection, not thinking it could be anything else. But as time went on (now 2 years)I often wonder if that could have started this whole thing. I continued to use bothproducts for about 2 months, then threw it all away just in case that's what it was. Ofcourse, here I am a year and some later and still having problems and still throwingthings out. Has anyone else ever used these products???
CommentHi Marilyn. Is there any chance that you can get the percentages for the University ofM prescription that you're using. I know you said Elavil and a muscle relaxer, but thepharmacist here wants to know if I can give her percentages for each. I'd really like totry it. Thanks much.
CommentI was wondering if anyone has ever taken steroid medication to treat this awfulcondition? If so, has your condition improved, stayed the same or worsened? For those ofyou who became pregnant I also want to know how your vulvodynia/vestibulitis was affectedby pregnancy. Please e-mail me with your responses or just post them here on the website. Thanks
CommentTO ANON (9/12) I posted on 9/11. I have had good success thus far with Elavil. I havebeen taking it for a month and a half. I am up to 75mg now. For the first 5 days of takingthe medicine I have felt very sleepy. I don't any more. I feel absolutely fine. I didnotice that my sex drive decreased a little. As far as orgasms are concerned, this drughad no negative effects on me. The only side effects I have is dry mouth, and, every nowand again, very bazzar dreams (not nightmares, but just strange). I have not gained anyweight. I must say that I have always excersised 5 days a week, and watched what I ate.Since I started to take this drug I am more consiously avoiding icecreams and such. Ofcourse every now and again I eat sweats, and fatty things, but for the most part I eathealthy. Hope this helps. Lea
CommentHi, all, This is my first post - I was diagnosed a couple months ago - I wasn having a lot ofpain with intercourse, and also some day-in, day-out pain. I though it was a yeastinfection. I believe that my onset was caused by (all in the space of one month) going onand off the pill, having two yeast infections (and two courses of anti-fungals) and abladder infection (and a course of anti-biotics). In addition to pain around the vulvarvestibule, I also have periods of intense burning and itching around my clitoris, and someUTI-like symptoms. I think that different cures work for different people, depending onwhy their vulvodynia came on. I think mine is primarily hormonal, but also a reaction toseveral courses of anti-fungals. So far I have tried cortisone cream (helped a lot but Igot scared about skin-thinning and stopped), dietary changes, and estrace. I'm not sureI've been on the estrace long enough for it to do anything, and I am in slightly more painthan I was in while using the cortisone, but I think that most of my pain has beeneradicated by the dietary changes. THe most important change I have made was to cut outall inflammation-promoting fats. These include margarine, all partially hydrogenated oils,and all vegetable oils but olive oil and canola oil. There is a full explanation for whycertain fats ptomote inflammation on Andrew Weil's web page. It takes about 8 weeks beforeit starts working, but I truly believe it has helped me. I also try to avoid all coffee,sugar, alcohol, and dairy products. It's hard, and it's a pain reading labels all thetime, but I'm willing to try anything to reduce my pain. I also take sitz baths severaltimes a week and take supplements (C, E, a multi with herbs in it from my naturopath,Saint John's Wort, and ginger, which is a natural anti-inflammatory). It's taken me threemonths to start cpoing with this mentally. THerapy helps. It's been particularly hard onmy relationship with my partner, but I think we are finally working towards bettercommunication about this, and about sex (which can be hard to talk about when you'reperfectly healthy). I'm thankful for the people I've met over the internet, on variousmailing lists, and here in the guestbook. I'm always happy to e-mail with others who arecoping. Take care, Erica
Commentthis possible could be what i've had for i can't tell you how many years! Veryinteresting....thank you
Comment9/13/00 Dear Dr. Glazer, I want to start by thanking you for making this website available. It has already givenme much valuable information, and I appreciate the help it provides. I also want to thankyou in advance for reading my story (if you choose to do so) -- I know this will be long,but it helps me organize my thoughts, and it may help someone else out there with asimilar pattern of symptoms and experiences. I am 46 years old, Caucasian, and work as an assistant manager in a busy publiclibrary. I am, frankly, terrified about the implications of this condition (or do we callit a "disease?"), and what it means for the rest of my life. I am single,never-married, and have not been sexually active since 1993, more by circumstance thanchoice. My pain did not begin manifesting as a result of intercourse, but just seemed tocome out of nowhere. It might be important to mention that I was taking Mircette oralcontraceptives (beginning in April 1999) to control severe mid-cycle ovulation pain andbloating. I had no trouble with the Mircette the first year, and was planning to use themlong enough to segue painlessly into menopause. I am a member of a master's swimming team,work out 3 or 4 mornings/week, and am in reasonably good shape for my age. Just today, I was given an "official" diagnosis of vulvodynia. My vaginalpain symptoms began in April, 2000, about a month after I began experiencing sciatica inmy right leg. I was X-rayed and MRI'd in March, and told that I have mild osteoarthritisin my lumbar spine, as well as bulging discs between L2 and S1. My physiatrist (spine andsports medicine specialist) prescribed nortriptyline, 10mg./night for a few months, tohelp alleviate the sciatic nerve pain, and referred me to a PT for about 10 sessions ofphysical therapy, which helped. The sciatic pain gradually disappeared. In April, I developed what I thought was the most intense UTI of my life. My primarycare provider prescribed antibiotics, which (of course) didn't alleviate the pain. Allurine tests have been negative. I then went to my (former) OB/GYN's office, saw anurse-practitioner (the doctor was never available), and thus began a 4-monthmerry-go-round of Terazol, Diflucan, Premarin cream, OTC antifungals, and Replens.Initially, the nurse-practitioner did find yeast, so I really can't say I blame her forany of this -- I believe she was responding by rote to what she thought was a routine andeasily-cured gynecological problem. In early September I decided to try a different OB/GYN, Dr. Steven Waszak, who did moreslides (he saw no yeast, but lots of white blood cells and vaginal inflammation), andrecommended boric acid capsules. He also did abdominal and transvaginal ultrasounds, andsaid my uterus and ovaries looked fine. The boric acid capsules made me bleed slightly--not menstrual bleeding, but a pale pink discharge. He next prescribed Flagyl for 5 days(no change); then a Medrol (methylprednisolone) dosepack, which I just finished on Monday9/11, again with no alleviation of symptoms. When I went back to Dr. Waszak for my follow-up visit yesterday and reported that theburning hadn't abated, he didn't examine me again. He suggested I contact Dr. DavidEschenbach at the University of Washington. Unfortunately, I learned that Dr. Eschenbachisn't taking patients until next year -- he is only available one day/week, so anyimmediate consultation with him is not an option. At that point, I began to break down. I decided to try someone else, got a referralthrough a hospital referral service, and today saw another OB/GYN, Dr. Richard Agress atthe Polyclinic here in Seattle. He did another pelvic, pap test, cultures, and a vulvarbiopsy. An acetic acid wash didn't reveal any whitening, so I think he doesn't suspectHPV. (I have never been diagnosed with an STD, genital warts, or herpes.) He also said myvagina didn't look particularly inflamed. I think Dr. Agress is more willing to work with me on this, but I also think he is,frankly, stumped. When I asked about pain management and mentioned that I had usednortriptyline, he phoned a neurologist in the Polyclinic. She suggested he prescribeNeurontin, and requested that I make an appointment with her tomorrow. Dr. Agress said shemay want to do another MRI, to look at my pudendal nerves. He also said I might need aurological workup, to see what shape my bladder is in. My symptoms are: an intense burning sensation INSIDE my vagina, that radiates downwardto the labia; and a vague feeling of bladder burning and occasional spasms in my urethra.I am terrified that I may also have interstitial cystitis, although I can go about 2 hoursbetween trips to the bathroom, and usually don't have to get up to urinate at night.Sitting is the most painful; walking also hurts, although somewhat less. Being in ahorizontal position at night seems to bring the only relief. I have also been takingAveeno baths, which seem to help, but only temporarily. Based on the research I've done, I realize that there are different types ofvulvodynia. The description that most accurately matches my symptoms is dysesthetic, orprimary vulvodynia, which I've also seen referred to as pudendal neuralgia. I am nodoctor, but this "feels" to me to be nerve pain, similar to the pain Iexperienced with the sciatica. I do not seem to have any vestibular pain, as such --penetration with a Replens applicator, for example, doesn't hurt, although the idea ofintercourse is another matter. My questions to you (assuming you've made it this far, and if you have I bless you): - Are you familiar with Dr. David Eschanbach and his work? Should I get my name on hiswaiting list now, while continuing to pursue help from other providers in the interim? - From what I've read, I think this is more effectively handled by someone with abackground in neurology and neuropathic pain management, as opposed to an OB/GYN. Do youagree? - Finally, I would like to know your opinion of Neurontin; and if you know anythingabout the success rate of pudendal nerve blocks. Frankly, the idea of being numb from thewaist down is an appealing one these days. Again, I thank you for everything. I have the feeling I am in for a long and difficulthaul here. Sincerely, Deborah Bagg
CommentShari, I got a really bad sinus infection in 1999. I'd already had vulvodynia for about6 mos by that time. Nothing would help (I was trying antihistamines and decongestants,prescription and over-the-counter), but I wasn't about to use an antibiotic (another onsetof yeast? No way!!!) Anyway, this sinus infection would not go away; I was so stuffed upthat the only way I could breathe was thru my mouth. Anyway, after several months of this(gee, wasn't the vulvodynia enough?), I finally decided to fill a prescription for asteroid that I'd had but didn't want to have to use . I wished I had done it sooner; I wasbreathing again w/in the first day or so. ....but unfortunately it did nothing for thevulvodynia. Didn't make it worse, didn't help it. For what it's worth, that's it. Sorry!
CommentHi Everyone- I am 29 years old too have been suffering from vulvadynia for about 2 1/2years and I empathize with you all. I have just recently found this site and have beenreading all the postings. I was curious as to if anyone has the same expierience I have inthat during menstruation my symptoms are not as severe (many times I have none at allduring this time)? Could this mean this is hormonaly related somehow? If anyone has anyinfo in this regard I would love to hear from you via e-mail. Thank you! Christine
CommentChristine, I notice that my symptoms decrease and sometime disappear too when I have myperiod. However, my synmptoms only stared to decrease when I stared to use tampons again.I had stopped using tampons when this whole thing started but now realize that they help.For everyone else, I went to see an OBGYN the other day and he told me to start to takecalcium citrate (over the counter) and said that those pills will help absorb some of theoxylate from my diet which might help the symptoms. He told me also to avoid spicy andcitric foods. Hope this helps some of you
Commenthi, i've also just been told by my doctor to take calcuim citrate pills for that samereason (absorbing oxalate)... and have also notice that during my period theirritation/burning/itching is less.
CommentThis is my first time writing and I have been suffering with vulvodynia for about ayear now. This is so awful! I feel like such a reject. All my friends are getting pregnantand I can't even have sex with my husband. I just want to be normal. I tried Diflucan oncea week for 8 weeks with no luck. Now my gyn has me trying boric acid suppositories. Anyonehesrd about them and if they work? I actually just heard that one of my friends wastreated with Interferon injections. Does anyone have any information about that? Anyinformation will help me! thanks
CommentI have so many questions... I dont want this thing to get the better of me. I justfound this website, and its so nice to know that I am not alone, yet sad at the same time.I'm trying to learn more about diet and biofeedback, and what sucess any one might havehad with this. What foods am I supposed to avoid? I've heard the term low oxalate, but Idont know what that mean. Help? Anyone?? Thank you....
CommentI had a moment. I've been going through this for 12 years. My moments are rare, but boyyou feel so good to be alive. Since Sunday (this was an exceptionally long moment) I havefelt like my old self. No pain, itching, swelling, etc. etc. Buying mums and pumpkins,made love to my husband, wore underwear and even crossed my legs. It's a mixed feeling.You feel on top of the world yet sad to remember this is how you use to feel. 12 years ofdoctors. Let's try this - OK doc. Well if that didn't work we can try this -- OK doc.Surgery will cure this -- OK doc. Try this -- OK doc. Well it was a great week. It'swhat's I call "the calm before the storm." Always happens after my moments. Thepinching has started. You get that feeling like you're not sure if something is moving orgrowing down there. Getting that sharp pain in the clitoris. Burning around the opening.Itching in the public hair. So much for crossing my legs. I should have an infectionwithin a day or so. Well, moment over! Who else can I tell this to but to you.
CommentLois, Here's to the moment!!!! I am glad that you at least had your moment if only for ashort time. Hoping that you have another one soon and that it will last longer next time.Look at it this way, At least you made the best of it and savored it while you had it. Youwill have another and hopefully one day that moment will last a lifetime not only for youbut us all !!!!!! Take Care
CommentWe all need to laugh. Well, don't we? Okay, I couldn't resist, someone besides mesurely noticed it. Lois...."Itching in the public hair"? PUBLIC HAIR! Well, I guess w/all thedoctors, nurses, surgeons, anesthesiologists, etc. that have looked at us down there, itdoes feel like a public arena..... {-: Ladies, even though we HATE our suffering, who else but with our sisters that share inthis nasty disease could we possibly joke about this!! On a serious note, thank you, Lois, for sharing w/us. We all know exactly what youmean. And hopefully, our good days will finally be more and more frequent until we cankiss this nasty disease goodbye!!!!
CommentThis is my second posting on the guest book. I have had vestibulitis for twelve years (with a proper diagnosis after 8 of those years). My story is very similar to a lot ofthose I have seen here. I several yeast infections and was on the pill right before thisall started. I have done everything to find a cure that I have seen on the site. Whatdidn't work: creams, boric acid, diflucan, ketaconazole, douches w/ anything, vaseline,powder, crying. Things that have worked a little: glucosamine sulfate (generic,SHOPKObrand), calcium citrate (generic), some low oxylate food diet attempts, antidepressants.What is currently working the best: rinsing with tap water every time I urinate,glucosamine, calcium citrate, tampons only w/ my period (no pads). Right now myvestibulitis is under the best control in 12 years!!!!!!!!!!!! I am currently on effexor(some weight gain),rinse with every urination, taking calcium citrate and glucosaminesulfate. If I skip rinsing even once my symptoms get worse. I don't notice much dieteffect currently. I hope I have helped someone on this site with my message. 12 years ofthis condition is enough to make a person unable to enjoy anything and drastically changeswho you are and what you could be or could have been. I am starting to feel more hopefuland do think there is a STRONG link to the chemistry of the urine in women with thissyndrome. Thankyou for reading my letter and my best wishes to you all!! Lisa
CommentHi, I'm wondering about the effects of wine and other forms of alcohol. Do most of youavoid them all together? I saw a listing where wine was categorized as "lowoxalate" but is it considered an irritant anyway? I'd appreciate your opinions.Thanks!
CommentMy doctor says that the herpes virus causes vulvodynia, and that many people have noidea they have herpes because often herpes does not even cause skin lesion breakouts, butthat the virus itself can be inside the nerves, irritating them and causing vulvodynia.Only 1 in 5 people who have herpes know it, as it is often asymptomatic in the"usual" (ie, blistering) sense and many people never have any breakouts, butthat doesn't mean it isn't alive and well in the nerve ganglion causing pain. Comments?
CommentI have been trying to get pregnant (on the days when I can tolerate sex) and found outthat I am not ovulating due to my progesterone level is too low. I began taking amedication called " Clomiphene" - (Generic for Clomid). I noticed that shortlyafter taking this medication, my VV became worse. I was wondering if any of you have takenClomid before, and if so did it affect your VV? My Gynecologist has told me to double the dose of this medication this time because myprogesterone level has increased but not high enough to hold a pregnancy. If increasing the dose will cause my VV to become much worse, I am willing to sayFORGET IT and just go ahead and look at the adoption option. Any information that can be provided about Clomid and VV will be GREATLY appreciated! Thanks, Shari
CommentTo Darlene: I have never heard of the herpes virus causing vv. I would get anotheropinion and check your md's credentials.
CommentDear Dr. Glazer, by using the internet I found this side. I registrated myself in thevulvodynia-deutsch-group, but there are nearly no informations, only in english. Myschool-english is not enough to understand all these medical articles. How can I or mydoctor get all these informations in german, so that someone can help me here in germany.Is there a chance to to this muscle rehabilitation in germany ? Thanks for furtherinformations and excuse my bad english! (I am 41 years old, have two kids and thisvulvodynia since approx. 6-7 weeks. yours, sylvia kunkel
CommentI've had vulvodynia for almost 2 years now. I was diagnosed about a year ago and alsodiagnosed with lichen simplex. This nightmare started with a course of antibiotics forstrep throat. I proceeded to get a yeast infection for which I used an otc product. Itthen turned into a bacterial infection, which turned into literally months of medications,creams, ointments, etc along with test after test for every std known to man, all of whichcame back negative. Most of the medications helped only slightly or actually made thecondition worse. After awhile I started to take matters into my own hands and after someresearch started using boric acid suppositories. I have to say that this treatment has hadthe most positive impact on my condition, but is by no means a permanent cure. It alsotook 2 or 3 months before I started to notice any drastic improvement, but gradually Istarted to notice that I was having more and more good days. Unfortunately, it alwaysreturns sooner or later. I have almost no sex life anymore, even though I was just married2 months ago. My husband is very understanding, but I still get very depressed at times. I take issue with the notion that this might be an std. Too many women are getting thisthat are in long term monogamous relationships or are still virgins. It doesn't makesense. I've tried Flagyl, again and again, along with many other antibiotics, but theyhave been no help AT ALL and actually make it worse, I believe. At this point I refuse totake any oral antibiotics unless the infection is life threatening. Fortunately, I haven'tneeded any in the last year and a half. I also have Fibromyalgia and have heard these conditions are related. That's why I dobelieve it is neurological or muscular in nature, even though, I DO have the rednessaround the vulva. I'm also interested in any connection between this condition andtailbone problems or hemorrhoids, both of which I have. Someone mentioned topical antihistames, which I think I might try. I'm also curiousabout the relationship between this condition and the pill, which I've been taking foryears. I only say this because I notice that many times during my period, the conditionseems to improve and I'm not sure if this is a coincidence or what. I'm seeing my gyn nextmonth and plan to discuss this issue up with him. Ladies, I know we are in a terrible battle here and I pray to God that someone willhear us and invest more time and money into research for this disorder. How many womenhave to suffer needlessly for years before someone does something. It's verydisheartening. I also think the solicitors on this site are disgusting. We are obviouslySUFFERING. If you know of something that could help us, then share it as any decent humanbeing should. Shame on you. To all the rest, God bless.
CommentHey ya'll, This is to you ladies who have used or are about to use Boric Acid Capsules.In the beginning of treatment about 7 yrs or so ago I was treated with the Boric acidcapsules. I had a severe reaction to it I blistered, had weeping from this blisters thatmade me feel like I was urinating at the time. I swelled almost shut down there.Unfortunatly I have such sensitive skin and have such severe reactions to chemicals thatnot much has not helped as far as the medical field. I do have my good moments thoughwhere I have afew almost pain free days. I do believe this condition can be caused by manydifferent factors such as STDS ( I had HPV, genital warts which I got from my 1st husbandwhen I was 19, I am now 41), I was treated with so many chemicals that it had to dosomething down there. Also the warts are a virus aand can come back at any time. So far Ihave never had another outbreak, but a biobsy in March 99 of my vulva showed the virus isthere. Also I have an immune definicy disorder which my GYN believes contributes to thiscondition. He also believes there are lots of different factors that contributes to thiscondition. Such as medications to treat bacterial infections, recurrent yeast infections,immune system, sensitive skin, etc. I now live in Houston, TX we moved here almost a yearago. We are going back to Iowa for a visit and I plan on seeing him while there. I haven'tfound a specialist here and I perfer seeing someone who knows what I looked like downthere before and that I'm comfortable with. Here is to pain free days to all of us. Oh,almost forgot, I use to get worse before my periods and when ovaluting and would getbetter after I would start, but for about 2 years now I just hurt all the time. Before atleast I would have a week or two of relief,but now I may have a day or 2 of relief.Sometimes more. But I'm in pain more then I'm not. Will let you all know how it goes whenI see the Dr at the end of Oct. Catch ya'll later. Chris PS To the lady that thought that herpes could cause vulvodynia I agree if HPV or wartscan why couldn't herpes. I get herpes outbreaks in my nose and I get severe burningitching and pain and swelling from it. Also shingles is from the herpes or chicken poxvirus and it follows the nerves and is very painful. So yes I do believe this and any STDcan cause this condition or be one of the many factors.
CommentTo Deborah, I have tried Neurontin and it didn't help me, however since each case seems to be alittle different - it wouldn't hurt for you to try it. Also, I discussed the nerve block idea with my doctor and she said they usually only dothe nerve block if the pain is concentrated on one side. Unfortunately, my pain is on bothsides of the vaginal entrance, so they couldn't do it.
CommentTo all, I mentioned last week that I am on a combination cream of Elavil and a muscle relaxer.It seems to be helping me. However, I am having a bad day today and don't really know why- maybe because it's Monday (just kidding). Anyway, the script is written as a transdermal gel with 2% Amitriptyline and 2%Baclofen. I have been on it for a month and I don't think I am using as much as I shouldbe, because the tube was only supposed to last a month and it appears that it will lastabout 4 months. I will need to check with the doctor again about how much to use. Good Luck all.
CommentTo Callie: Oops! Public hair. I better start using spell check. I just typed a memo formy boss "listed below are the dates for the following SEX meetings" Should ofbeen six. His sense of humor doesn't match yours. To Chris. I too had warts and removed by laser and I feel that's what this all stemsfrom. I agree with your doctor. But there are so many women here who didn't have warts.But it does seem we have all suffered from yeast/bacterial infections and I feel forwhatever reason all these creams and oitments and pills have affected us the same way.
CommentHi ladies. I'm going to OHSU tomorrow to see a specialist on vvs. She is one listed onthis website for Portland, OR. It's to bad that since my insurance is HMO and OHSU is notcovered under at HMO, they won't cover me. So I have to go without insurance coverage andthe bill is going to be about $400. But they worked with me on a payment plan. I just hateHMO's...they send you to doctors that can't help you because they are restricted...I thinkthat's rediculous. Oh well at least I am finally seeing a specialist. I will keep youupdated if she proposes any new ideas. Have a good day!
CommentHi- To all of you who rinse with water after urination, how do you go about doing that atwork or when you are away from home?? It is easy to do at home, but I would look funnycarrying a squirt bottle of h2o with me everytime I go pee!! How's it done? Please tellme!
CommentLois, You made me laugh girl. Loved your posts. Who could ever imagine wearingunderwear would be a luxury? I haven't even tried to do that in months. Sometimes I wonderwhat "lesson" I am supposed to be learning from this. I almost felt like I had agreat day when I read about yours. To those discussing herpes. I had "positive"tests for exposure, negative for outbreaks. That scares the living daylights out of me.Herpes "settles down" as I understand it. It does not tend to get worse, butbetter, and how does that match up with 24/7 pain? C
CommentI wish I had access to this website 8 years ago. I was diagnosed with vulvarvestibulitis at age 18. I went through so many different medicines etc. Alot of whicheveryone is talking about on here.( Anti-depressents, topical ointments, steroid creams.)I couldn't wear jeans. It hurt to sit and couldn't even stand to get a gyn exam. I hadsurgery about 2 years after being diagnosed. It was very successful!!!!!! I have had noreacurring problem and it's been 6 years. The only thing that I have battled forever isyeast infections. (Which I notice is really common in women who suffer VV.) I try to stayon a low carb diet. It really seems to help. I've gone atleast 6 months without aninfection. If anyone has any questions feel free to email me. I know what it's like livingin pain.
Commentto those who have notioned that this could be std related: i dont know what caused my vestibulitis but i have had it for as long as i can remember(i didnt realise it when i was little of course but when i read the symptoms.. after beingdiagnosed with this disease at the beginning of the year... i realised that my childhoodmemories of burning/itching/drawyiing sensations coming from 'down there' werent normal(as i had thought they were normal... not knowing any different if you know what i mean).so i've just assumed that i have had this thing since i was born. anyway, my mum told methat she had herpes at the time that i was born....... i dont know if that has anysignificance... but my doctor hasnt said it could be caused by that. my doc just tells me to eat low oxalate, tryu the calcium citrate pills and rinse withwater that is slightly salty after every time i urinate (1 tsp salt in 1litre of water). ialso use estrogen cream. it provides little relief.. it stops the itching at least. anyways, good luck ladies, i'll see you again next time...
CommentTo those questioning whether or not vulvodynia is an STD, specifically, herpes:vulvodynia is a pain condition involving inflammation and sensitivity of the vulvartissues and nerves. This inflammation and sensitivity can have many causes, includinginfections like herpes. Many infections can be transmitted sexually. As an infection of the nerves, herpes certainly *can* cause vulvodynia, and in factmany women with diagnosed genital herpes suffer from the same symptoms as most vulvodyniasufferers. The virus *can* hide in the body, causing pain but not visible outbreaks, andit is definately possible that many cases of vulvodynia are actually cases of"hidden" herpes. Herpes is frequently misdiagnosed or missed altogether bydoctors (they aren't perfect, and it's a sneaky virus!) However, there have been studiesusing very sensitive DNA tests that checked for the presence of herpes virus in women withvulvodynia, and the results show that plenty of women with vulvodynia are not infectedwith the herpes virus. There is now a set of blood tests which can check for antibodies to this virus in yourblood. The tests are now sensitive enough to distinguish between type 1 of the virus(which generally causes cold sores) or type 2 (which generally causes sores "downthere.") Both types can infect either location, actually, so just knowing that youhave one or the other doesn't necessarily tell you where it is if you've never seen asore. If you have vulvodynia, and your blood tests for herpes are positive, anti-viralmedicines might help you. If your blood tests are negative, you'll have to keep searchingfor the cause of your vulvodynia. One more note: obviously, since some infections can remain 'hidden' in the body,long-term monogamy is not a guarantee against infection. You or your partner could havebeen unknowingly infected prior to the relationship. It's a scary thought, but one toconsider, especially if proper treatment will help you feel better. Also, some women gettype 1 herpes on their vulva from oral sex with a partner who gets cold sores, which arevery common. Anyway, that's just my two cents (or ten...!) I found this information throughextensive research (NOT through my doctor, or course!) and marched right in to my gyn anddemanded the blood test. It WAS scary, but the tests came back negative so I couldeliminate that possibility. Of course, I'm still trying to figure out what is causing mypain...!
CommentThis is to all of the people who are avoiding soy. What do you eat? I am trying it andfinding it to be extremely difficult. Any suggestions????
CommentTo those who want to know how to use water when you urinate at work. I would suggestcarrying a bottle of water with you. Like the bottled water that you can drink. I won'tlook funny because alot of people carry drinking water now days. You can either lean backand pour the water while you are urinating or use one with a sport cap and squirt it whileyou are urinating. I know it sounds awkward, but try it. I usually only have the problem with the firstmorning urine, when I haven't had anything to drink yet. Once I start drinking waterduring the day, the urine is not as concentrated. By the way, I drink at least 64 ounces of water per day, so I do urinate quitefrequently.
CommentTo C. I'm glad I made you chuckle. I really had a laugh back a few guestbooks ago whensome guy asks about his "VOLVO" losing oil. VOLVO -- VULVA. Close. I reallywanted to write back and tell him: when he washes his car don't use soap, drive on baldtires, don't cross lanes and most importantly, use Astroglide and definitely don't eatsoy.
CommentWriting for my 2nd time. A lady asked about low oxalate diets. Everyone talks aboutthem like we all know. I don't. What's it all about? I suspect it means giving upchocolate, which hovers somewhere just below giving up sex on my "things thatsuck" list. As i find my worst times to be right before and during my Moontime, Ialways assumed the condition to be triggered by hormones. This theory seems to besupported by the soy ban approach, as soy is laden with estrogen. Also, someone mentionedusing testosterone cream. BUT, my partner mentioned that during the my moontime, when thecondition becomes more and more tolerable,( to the point that I can enjoy sex for a coupleweeks after, before it gets too irritating) I routinely use tampons. This keeps the fluidinside from reaching the outside. WE did a ph test and found my secretions to be highlyacidic. To keep the interior acidity from burning my vestibular area, I've been air/sundrying myself, then putting a natural oil on the skin to protect it, and prevent thechapping that over-drying can cause. Also, using hemp tea has been soothing, but I'munsure of it's benefits beyond that. Still avoiding underwear as much as possible, to keepthe airflow going. I miss my cotton undies., though, and wear them when I'm feelingbetter. The only hassle with getting better, and then worse, is that my hubby wants to doit constantly when we finally get to! I'm as concerned with the redistribution of my owninner acids as I am with the friction of penetration. We usually engage in a lot offoreplay. Now I'd rather use a substitute lubrication and get on with it, as I don't trustmy own "juices". All this fussing is such a drag. I finally got to the point inmy life where our girls are all pre-teens and teens, and need less day to daymaintainence, and I feel like this is taking up time, energy, and health I thought I'dhave for myself and my partner. Also, there are times when I honestly don't know if sexwill hurt or not. I hate to say "yes" and then have to say" oops, I can'tafter all" Sometimes I just go through with sex anyway, to please my veryunderstanding partner. Then HE gets mad at me for not being honest, and because he doesn'twant to hurt me. Round and round it goes. Thanks for letting me vent. Alwynd.
CommentRegarding the discussion about herpes and vvd: I have been told repeatedly by severaldoctors that my vulvar pain has nothing to do with my herpes. But I don't buy it -- myvulvar pain and problems all started two years after my initial herpes outbreak. I had asore, tested positive and the pain just never went away. I've only had a few sores (that Iknow of) since. A few doctors I've seen, however, feel you can get "post-herpetic neuralgia"from genital herpes and that this could be causing my pain. This seems to be a minorityviewpoint, though -- post-herpetic neuralgia usually comes from shingles. Seems mostdoctors don't believe it occurs with genital herpes. But I'm convinced that it is the primary cause of my pain. I think there are are otherthings going on which contribute to the pain -- like the copious discharge that has toomany white blood cells -- but I think the burning has alot to do with nerve pain from theherpes.
CommentHi Everybody, It is about midnight and I am sitting at the computer waiting for the amitriptylene tokick in and help me sleep. I have had a new development with my vulvodynia. I thought Ihad a UTI until they checked my urine and found no bacteria. Up to this point I have hadno involvement with urinary pain or burning. I have been to a urologist and they areplanning to to use a scope and see if I have started to develop intersitial cystitis. Ireally have not had all of the symptoms that IC includes but we must test to eliminate orinclude treatment for it. Has anyone else experienced these symptoms long after they havebeen diagnosed with vulvodynia? I have also seen a specialist in the Kansas City area.They are considering using a sacral nerve stimulator as a treatment for pain relief. Theycurrently use this for treatment of IC patients in some cases. I will post when I getadditional information. Wish me luck on my tests. Jean
Commenti have a discharge which isnt unhealthy (i dont think) but whenever i have it myirritation is increased....... i was wondering if it was normal to have this discharge?sometimes it is clear and sometimes it is cloudy.... does someone have any answers?
CommentIt appears that vulvodynia fits in a pattern of infections and swelling. Colostrum,baby's first food, is designed to build the immune system by providing flora (bifida) andimmunoglobulins against bacteria, yeast fungus, anti-virals, allergies, skin problems, andmore. Colostrum is baby's first food for mammals. When we take anti-biotics the flora inthe intestine are killed off and are overgrown with yeast fungus. The patterns of flora inthe intestine is designed by nature to produce a system of health. Anti-biotics preventsome of the steps in the health system by leaving behind yeast fungus overgrowth. So theimmune system is not working completely. Nature's pattern for health is that the colostrum plants the flora "bifida"followed by mother's milk which plants the flora "acidophilus". This patternwill cause health. It will defend against bacteria, yeast fungus, virus, malformation ofRNA and DNA. It protects agains E. Coli, salmonela, shigela, pheumonia, leaky gutsyndrome, candida and more. It restores bones from osteoporosus. Colostrum was theanti-biotic before penecillin was invented in the 1940's. It is used to restore health toAIDS and cancer patients. It works. To take colostrum begin with 1 capsule followed 1 hour later with 1 capsule ofacidophilus. Expect fungus "die off" which can be a day of depression ordiarrhea on one day. When that passes increase the colostrum to a capsule one morning andone night followed by the acidophilus. Expect another "die off" and expect tohave releif from infections and pain. If you swell and hold water, then return to 1capsule of colostrum for a few days followed by no colostrum a few days until you figureour you pattern. Continue the acidophilus. It stablizes the system. If you experienceconstipation, add at least 1000 mg of vitamin c and drink 8 glasses of water daily. Youwill restore health. It may take about 2 to 6 months. Body builders use colostrum to buildhealty bodies, too.
CommentTo Rebecca, I too noticed that when my pain flares up I start to have a discharge thatis usually cloudy. I also notice that my urine smells very strong. I brought this up to myspecialist and he said that discharge is normal and that was it. I don't agree with himsince the only time I get this heavy of discharge is when my Vestibulitus is flaring up. Iagree with a lot of other women on this site who say to rinse off well after urinating oreven during. I know this isn't much help but I wanted to let you know that I noticed thesame thing.
CommentHello again, My 2nd time here and I have some questions for you all. 1st--I read wheresomeone noticed that most of us have had HPV, I have noticed that also and I had it aswell but it was over 10 yrs ago. Could it possibly have anything to do with this? 2nd--Iread of everyone talking of pain. I have no "pain" My worst symptom is burningusually 2 wks of the month constantly (not the week of my period or the week immediatelyfollowing) but the other two weeks I cannot bare to even try sex due to the paid from theburning. However I do not have any sharp pains in my stomach or feminine areas. Are these"pains" that you are all mentioning, sharp pains or are you talking of pain fromburning? I do remember however that when I first had the HPV, one of the extereme symptomsof that was very sharp pains during sex and a small amount of bleeding also. I was treatedthen (10+ yrs ago) with a "freezing" cryo-something of the area. I have alsoheard of something where the ovaries are hanging down or have moved for some reason andwhen sex occurs they are bumped and that causes extreme pain. After the procedure I wasfine, no pain or bleeding. My sister also hard sharp pains during sex and she was toldthat she had endometriosis and had surgery that seemed to help her.
CommentHello again, I am gonna try this again (PLEASE read and reply with any answers to these??), I use my "tab" key a lot and I think I just sent this without finishing,but I am not sure so I will finish my message this time and THEN send it. I am sorry forthose who read it twice, if it gets there twice. My 2nd time here and I have somequestions for you all. 1st--I read where someone noticed that most of us have had HPV, Ihave noticed that also, and I had it as well but it was over 10 yrs ago. Could it possiblyhave anything to do with this, 10 yrs later??? I do know that HPV is not curable, justtreatable, so it can return. 2nd--I read of everyone talking of pain. I have no"pain" My worst symptom is burning usually 2 wks of the month constantly (notthe week of my period or the week immediately following) but the other two weeks I cannotbare to even try sex due to the paid from the burning. However I do not have any sharppains in my stomach or feminine areas. Are these "pains" that you are allmentioning, sharp pains or are you talking of pain from burning??? I DO remember howeverthat when I first had the HPV, one of the extereme symptoms of that was very sharp painsduring sex and a small amount of bleeding also. I was treated then (10+ yrs ago) with a"freezing" cryo-something of the area. After the procedure I was fine, no painor bleeding. I have also heard of something where the ovaries are hanging down or havemoved for some reason and when sex occurs they are bumped and that causes extreme pain. Ihave also noticed that sometimes my husband bumps my bladder and that causes sharp painsalso, so I am sure to relieve myself completely before sex as "planned" as itsounds, but that helps alot. My sister also hard sharp pains during sex and she was toldthat she had endometriosis and had surgery that seemed to help her. 3rd--I had not reallynoticed it until I read your emails, but I do have to urinate more frequently then I useto. It is not uncontrolable or TOO often, but definitely increased. And I use to drinkmore water than I do now. I know I need to start drinking more again. 4th---I have notenderness in my lower stomach area unless I press on it and then it is as if I have beenholding urinating for a while. Is this the stomach pain that you are referring to orsomething else??? 5th--I have read lots about this muscle massage thing, is this for the"pains" or for the burning???? I dont see how massage can help relieve burning6th--I have realized that I have a definite noticable change in natural lubrication duringsex, next to none now. So my husband and I took it slow last time until I had enoughlubrication (along with some manufactured lubricants) and the burning was next to none. Ithink there may be a link in that with me. Which brings me to a possible link: My burningseemed to start about the time that my natural lubricants became scares...and my naturallubricants became scares about the time that I switched birth control pills. I had startedhaving 2 wk long periods so my Dr changed my BC pills with a different dose of estrogen. Iknow that estrogen changes can really wreak havic on a womans body. So I wonder if any ofyour symptoms could have also started after a change in BC pills or a change inestrogen??? Thank you for reading all of the way through and thanks for your answers ifyou care to share. Best to All.
CommentDoes anybody know of biofeedback centers in Atlanta? Do most biofeedback centers knowhow to do the pelvic muscle treatment?
CommentCan somebody suggest physicians in the Atlanta or Philly areas that deal with vulvarvestibulitis? It is hard to believe that so few doctors deal with this condition. Thanks
CommentTo Alwynd on your question abour the low-oxalate diet -- the following web siteexplains the diet. http://www.branwen.com/rowan/oxalate.htm Or you can get good information on it by joining the Vulvar Pain Foundation. Basically, the diet is addressing one theory about the cause of vulvar pain -- thatsufferers excrete excessive oxalate crystals in their urine, which causes the pain.Sticking to no or low-oxalate foods, combined with taking calcium citrate supplements, hasbeen helpful to a lot of people. I had some luck with it at first, don't think it makesmuch difference now.
CommentJanice. I also had warts. I started with an infection. I had never, never had aninfection before. I was 42. I also found out I had warts. The doctor gave me aperscription for the infection. A couple of months later I had laser surgery. That waswhen this nightmare happened. This December will be 13 years. Since then, the burning hassubsided, except when I have an infection. I can't have intercourse, I mean I can, but notvery often. Always -- always, after intercourse I will get an infection. Infections;yeast/bacterial, have been for me the most difficult to deal with. Years ago the burningwould be so bad around the opening I had to put ice there. That has subsided, but alsoafter intercourse I have a swollen feeling in the whole vulva area. After laser, Idefinitely became very dry. I do feel that has something to do with it. I still think itwas the laser. After the laser I had many many stubborn infections and I was prescribedmega doses of flagyl and months of creams. I feel this too contributed. Since March, I'veexperienced something new -- extreme pain in the clitoris. Seems to last 2 to 3 months.I've been to many doctors over the years and very good ones. It was many years ago adoctor told me, without ever giving it a name, said to me "your quality of life willnot be the same." I'm feeling quite low right now. Last week I had a few good daysand now I have an infection. If you're going to see a doctor, I recommend a vulvarspecialist. They may not know how to cure it, but they hear what you're saying.
CommentLisa, I can highly highly recommend Susan Spadt-Kellogg an NP in the urology departmentat the Graduate Hospital in Philadelphia. She is very knowledgable about pelvic floorconditions. More knowledgable I might add, than most md's I have seen. C
CommentI have struggled with vulvodynia for 20 years, incredibly enough--I had the usualexperience of moving from doctor to doctor, playing guinea pig at a teaching hospital,having laser surgery based on a misdiagnosis, which lead to intensified pain. I figuredout that the majority of gynecologists generally have about five approaches to any sort ofproblem: burn it, freeze it, put a cream or ointment on it, prescribe a pill, and finally,pass along to a psychologist. Hard to believe they've had all those years of"training"... Twelve years later, in 1992, I finally received an accuratediagnosis. That was a relief in itself--I had heard, eventually with great skepticism,various diagnoses--from yeast infection to papilloma virus to lichen sclerosis--none ofwhich seemed to fit when I would read various descriptions or articles about theparticulars. When I read a detailed article, vulvodynia fit--and I even knew that I hadBartholin's gland involvement right from the get go (although my doctor spent about twoyears trying surface laser treatments that didn't help much.) After Bartholin's surgeryand a scar release, and some musclework, I am able to have intercourse. And have been ableto, for about three years. Yes, it burns, yes, there is muscle spasming, redness, etc, butintercourse used to result in actual tearing/bleeding, before it became impossiblealtogether. I guess I am wondering about the women who have this for twenty, thirty, fortyyears--can I expect to go along like this for the next while? Also, after nine surgeries,various injections (some of which were UNBELIEVABLY painful--far worse than surgery), etc.I almost seem to have a phobia about doctors of any kind...haven't been to a gynecologistin a few years, in fact...
CommentAbout the discharge- it is normal to have a clear or cloudy discharge. It is cervicalfluid. It can change colors and consistency's depending on where you are in your cycle. Responding to the question of what kind of pain to people have with vv? I think it isdifferent with everyone. I had the burning all the time, painful urination, couldn't standto be touched in the vulva area. There are alot of people that do experience the sharppains. I personally didn't have that. I think that's why some people respond tomedications and treatments and others don't. Everyone's body is different. I highlyrecommend acidophilus pills to those who have the chronic yeast infections. Also, a lowcarb diet. (sugar feeds yeast so it can keep growing) that is refined sugar andcarbs.(Carbs break down into sugar in your body. My worst time to get a yeast infectionwas right after my menstral cycle. This is because blood feeds yeast also. So you shouldtake acidophilus especially through your cycles. I hope this helps you all.
CommentThanks Heather. I also notice that when my vestibulitis flares up I get more dischargethan normal. I had this thought that maybe it is the body's way of trying to clear/cleanout whatever it is that is irritating the vulva. I'm going to start rinsing with water when I go to the toilet from now on too. Also my boyfriend left me. He says its because he has fallen out of love with me..which may be true, but I think it has a bit to do with us not being able to have sex allthis time. I know I will find someone who will be much more supportive to me and thiscondition, one day...
CommentRebecca, I am so sorry to hear about your boyfriend leaving you. It is probably morehis loss than yours. Hang in there and know that there IS someone out there for you thatwill stick by you through all the trials and tribulations you have to endure due to thiscondition. You WILL meet him one day. I know this for sure because I have a WONDERFULhusband that has been by my side for the 10 years that I (we) have been dealing with thishorrible condition. He loves me more every day and believe it or not this condition hasbrought us closer in so many other ways. As a matter of fact it is out 10th weddinganniversary today. Keep you head held high and know that you are loved. Take Care, Shari
CommentHi All! Something I have been thinking of when I go back all those years when this allstarted and have wondered about. I wonder how many of us tanned in the tanning beds in thenude. And if that could have done any damage? I remember when after I would tan I wouldget a burning sensation in the vulva area and also rectal area. I wonder if that alsocontributed to this mysterious and baffeling disease? Just something I have meant to postin my other postings, but always forgot. What do the rest of you think? I'm sure tanningand in the nude I probably burned that sensitive tissue and didn't relise it. They saythat there is going to be cases of skin cancer in places that there wouldn't have beenbecause of the tanning beds. Of course I know that isn't one of tha causes just wonderingif it could have been one of the many contributers? Saw my GYN yesterday. Had an ultersound and the cysts are still on my ovaries. The planis still to have a complete hysterectomy in the spring. I told her I had been leakingurine now without coughing or sneezing that it just leaks out. She thought I might havelow grade bladder infection and took a urine sample. Will have results next week. Hope everyone is doing well. Chris
CommentHi Everyone I live in NEW ZEALAND! Have been suffering from Vestibulitus for about 1.5 yrs and arenow part of a Wellington Support group. Before joining the group I too thought that I wasgoing crazy - but now that I know there is a few of us, I feel heaps better! I am nowabout to try bio-feedback, and was introduced to it by Dr Ansari - at Wakefield medicalcentre in Wellington. Hands down this has been the best Dr that I have seen to date. Hasanyone else had relief from it using Bio-feedback? Has anyone seen Dr Ansari? If there areany other New Zealanders that would like to join our support group please email me back onthe above address. It is also nice to know that there are others just like you!! Warmestthoughts - Nicola
CommentTo Tammi- I have been rinsing after every urination and have been doing great. I amstill afraid to jump the gun and call myself cured, but I am close. At work I bring asloppy wet paper towel and use it gently to get all the urine off my skin. Then gently dryoff and apply Crisco solid (a light coating to all the problem areas). I put some Criscoin an old small shower gel bottle to keep in my purse. I am currently asymptomatic after12 years of trying everything ever heard of to get rid of this problem. Good Luck, Lisa
CommentThank You Shari, so much... this place has done wonders for me, mentally.... at least inow know I am not alone. Congrats on your 10th anniversary!! I am sure I will find aloving and supportive partner one day.... my exboyfriend was just a big mistake (I onlynow realise). I was wondering if there are any Australians here with this condition? I'm from WesternAustralia and was just wondering if any fellow Aussies have found this site..... Anyway, I will be back soon.... By the way.. the rinsing is fantastic, when I dont rinse I can really feel thedifference...
CommentThank You Shari, so much... this place has done wonders for me, mentally.... at least inow know I am not alone. Congrats on your 10th anniversary!! I am sure I will find aloving and supportive partner one day.... my exboyfriend was just a big mistake (I onlynow realise). I was wondering if there are any Australians here with this condition? I'm from WesternAustralia and was just wondering if any fellow Aussies have found this site..... Anyway, I will be back soon.... By the way.. the rinsing is fantastic, when I dont rinse I can really feel thedifference...
CommentHey ya'll, Woke up early and am making muffins before getting ready for church. Startedrinsing with water and domboros solution mixed with it. Seems to be helping. I seem tohave quite a bit of relief this morning. Hope this will help. Seems to be already. I wasvery irritated around the ureatha area and labia from the urine leakage. After readingabout that a lot of you are rinsing and some of you emailing me that this could help, Idecided to try it. I also place olive oil and zinc oxide on the irritated areas. Today sofar I'm not burning as much. Hope it continues get better. Chris
CommentTo Lisa: please let me know if you find a good doc in the Atlanta area. I am stillsearching. To Christine and others: I too took Cleocin -t get. I am also better on my period. Itjust started being that way during the last three months, oddly enough. To Deborah: I also have sciatica. Please keep us posted as to your progress. Thanks as usual to all the great postings nikki
CommentI never thought I would do this, but I am going to post an entry. Since this is such apersonal topic, I will not give my name. I would like to share my story. To start, I had acomplete hysterectory at the age of 23, due to Endometriosis. I am now 52 and havesuffered with Vulvodynia for 3 years. I have also had low back pain and pain in my leftside for 3 years. Until now, I didn't think that there could be any connection between thetwo. I came across this guest book tonight. I did not realize there are so many women whosuffer with this problem. I have had constant burning for the 3 years in one degree oranother. There were some rare times that it was hardly noticeable and I thought maybe itwas going to get better and go away. But when my husband and I had sex, I knew the problemwas still there. The past few weeks it has gotten worse and the burning is more intense. Ithink it is because we have gotten a computer and sitting here really aggravates it. Butwhat I am to do. I sure don't want to give up my computer time. Sitting anywhere isuncomfortable. Whether it is a hard chair or a soft couch. So Whenb I am sitting on acouch at home or on my bed reading, I put my feet and lean to the side to get the pressureoff my bottom. It doesn't relieve the burning but at least doesn't aggravate it. My GYNDr. had to resign recently due to heaalth problems. I really liked her. She worked with metrying to come up with a solution. Using unscented products. Ointments and creams etc.etc. For 2 years she tried to get me to take Elavil. I was really leery about it. One Ididn't want to be taking some strange medicine, not knowing what it would do to mean. Andtwo I didn't want to gain weight considering I already had a weight problem. I have sincelost 60# and didn't want to be gaining it back. In May I consented and took generic Elavilfor 5 days. Only a low dosage of 10mg. one at bedtime. It made me so groggy, all I wantedto do was sleep. So I stopped taking it. I see one of you ladies said, after 5 days thesleepy effect wore off. So maybe I should give it another try. A few days ago I startedgoing to a new GYN. Prior to that I had tried Gyenelotromin, thinking I may have a yeastinfection. That didn't help. The Dr. said no infection but he did prescribe a yeastmedicine which hasn't helped either. On the 18th of October,I am going in to havesomething called a Colposcopy. Anyone had that? I am nervous about that. Maybe it willshed some light to what is causing this problem. This condition gets to be overwelming attimes thinking it will never go away. Especially after reading about the lady who hassuffered for 20 years. All we can do is have hope that one day there will be a cure. Oneblessing in my case is that I have such a wonderful understanding husband. I feel so badfor the 19 year old young lady who has had it for years already. I am so thankful that ifI had to get something like this, it wasn't when I first got married. But not till I hadbeen married for 29 years. This month we celebrated 32 years of marriage. With thiscondition, I feel like I am letting my husband down and being a failure as a wife. I am atthe point where I don't care if I ever have sex any more. What should be fun is now achore. My husband has willingly cut back to help me out. cominmg across this web site andreading the entries has been helpful. It is nice to know, that we are not alone. Afterreading the entries, I can see that my problem is minor compared to some of yours. Justwanted to share some of what I have gone through.
CommentI never thought I would do this, but I am going to post an entry. Since this is such apersonal topic, I will not give my name. I would like to share my story. To start, I had acomplete hysterectory at the age of 23, due to Endometriosis. I am now 52 and havesuffered with Vulvodynia for 3 years. I have also had low back pain and pain in my leftside for 3 years. Until now, I didn't think that there could be any connection between thetwo. I came across this guest book tonight. I did not realize there are so many women whosuffer with this problem. I have had constant burning for the 3 years in one degree oranother. There were some rare times that it was hardly noticeable and I thought maybe itwas going to get better and go away. But when my husband and I had sex, I knew the problemwas still there. The past few weeks it has gotten worse and the burning is more intense. Ithink it is because we have gotten a computer and sitting here really aggravates it. Butwhat I am to do. I sure don't want to give up my computer time. Sitting anywhere isuncomfortable. Whether it is a hard chair or a soft couch. So Whenb I am sitting on acouch at home or on my bed reading, I put my feet and lean to the side to get the pressureoff my bottom. It doesn't relieve the burning but at least doesn't aggravate it. My GYNDr. had to resign recently due to heaalth problems. I really liked her. She worked with metrying to come up with a solution. Using unscented products. Ointments and creams etc.etc. For 2 years she tried to get me to take Elavil. I was really leery about it. One Ididn't want to be taking some strange medicine, not knowing what it would do to mean. Andtwo I didn't want to gain weight considering I already had a weight problem. I have sincelost 60# and didn't want to be gaining it back. In May I consented and took generic Elavilfor 5 days. Only a low dosage of 10mg. one at bedtime. It made me so groggy, all I wantedto do was sleep. So I stopped taking it. I see one of you ladies said, after 5 days thesleepy effect wore off. So maybe I should give it another try. A few days ago I startedgoing to a new GYN. Prior to that I had tried Gyenelotromin, thinking I may have a yeastinfection. That didn't help. The Dr. said no infection but he did prescribe a yeastmedicine which hasn't helped either. On the 18th of October,I am going in to havesomething called a Colposcopy. Anyone had that? I am nervous about that. Maybe it willshed some light to what is causing this problem. This condition gets to be overwelming attimes thinking it will never go away. Especially after reading about the lady who hassuffered for 20 years. All we can do is have hope that one day there will be a cure. Oneblessing in my case is that I have such a wonderful understanding husband. I feel so badfor the 19 year old young lady who has had it for years already. I am so thankful that ifI had to get something like this, it wasn't when I first got married. But not till I hadbeen married for 29 years. This month we celebrated 32 years of marriage. With thiscondition, I feel like I am letting my husband down and being a failure as a wife. I am atthe point where I don't care if I ever have sex any more. What should be fun is now achore. My husband has willingly cut back to help me out. cominmg across this web site andreading the entries has been helpful. It is nice to know, that we are not alone. Afterreading the entries, I can see that my problem is minor compared to some of yours. Justwanted to share some of what I have gone through.
CommentHi, could someone please help me out here? I know people have mentioned the whole yeastissue.I do NOT have yeast infections, just an abundance of yeast. They are two differentthings. I think that is what is causing the pain. When the yeast goes away, the pain goesaway. i have tried just about everything to no avail. Some days are better than others andit has really gotten me down and quite depressed. Will I have to live with this forever?Will I ever have kids? I spend most of my time stressing out about the pain. When it goesaway all I can think about is whether it will return. Does anyone have a similarsituation??
CommentThanks to "C" out there! I made an appt. with the nurse you suggested at Graduate Hospital in Philly. Iappreciate your help. That same nurse, Susan Spadt, was mentioned to me by another personso she must be excellent. Lisa
CommentFor Lisa, Good luck with Susan Spadt. Maybe I will see you in the waitiang room. :) ForP., My pain is on my left side. Sitting is horrible Sitting forward (at the computer) isthe worst. I have left sided abdominal pain and back pain. My dx has been pudendalneuralgia. All the soaps and creams (or relaxation) in the world will not help entrappednerves or nerve damage. Find a pelvic floor specialsit. If you are near philly see aboveentry that mentions Susan. Good luck C
CommentHi Everyone, I hope you are having good days. I was interested in the postings linkingVULVODYNIA and HERPES. I used to get "paper cuts" in the vulvar area and I oncehad a cut inside my vagina. My doctor tested both for herpes and both times the resultswere NEGATIVE. But I still get itching and pinching under my pubic hair and some generalirritation all over. I suspect that some of the pain is nerve related and I wonder if itis post-herpatic neuralgia. I was just wondering if anyone has taken medication for herpesand if it has helped at all. Thanks.
CommentTo the person who was diagnosed with pudenal neuralgia. I am wondering how werediagnosed with this. I am sure I have it, but no one seems to agree on how it isofficially diagnosed other than a very painful nerve test which involves a shot in nerveitself. Have done quite a bit of research on this, would love to chat with you. Didn't seeyour email address posted, was hoping you might email me directly so we could share someinfo. I have been told different things by PT's and docs. Thanks...Jackie
CommentSorry about the goof up last night. I am still new to the ways of the computer sodidn't think my posting got submitted the first time. Therefore it is in twice. Thanks toC. for the information. I live in Washington so that specialist in Philly won't be able tohelp. I have never heard of Pudendal Neuralgia. I will have to mention that to my GYN nexttime. It is interesting to find someone who has left sided pain similiar to mine. I alwaysthought my back and side pain was a different problem from the vulvodynia. In June of 97 Istarted with the pain in my side. Three months later I started having the burning.Eventually the side pain went to my lower back. I had a colonoscopy and an ultra sound andboth came out negative. Later had my spine xrayed and an MRI all negative too. I use tothink the side and back pain were two seperate things also. My primary care Dr. said theywere connected by nerves. But neither he or my GYN ever said anything about my painshaving any connection with the Vulvodynia. A question for C. Do you know why the painwould just be on the left side? I also get cramping in my lower abdomen. Real low.Possibly that is all connected too. I have noticed lately that my bottom feels like itwants to go numb after sitting at the computer mainly on the left side and the pelvicarea. To the lady who mentioned that she is going to be going to OSHU in Portland. I wouldreally be interested in hearing more about that. What you have to go through and if youfound out anything to help you. My previous GYN kept mentioning about me going to thevulvular clinic in Portland which I put off doing. My new Dr. said it was at OSHU sopossibly the same place you are going to. After I have that procedure done on the 18th, Iwill see what happens. Maybe I will be going there as well. Thanks again C. P.
CommentHi all, I'm interested in the comments about left-side pain. During the second of mythree pregnancies, I started to develop sciatic pain in my left hip. It got severe duringmy third pregnancy....it would feel like a "charlie horse" in my hip and downinto my left thigh. It would be really difficult to get out of bed at night...or to sitdown to go to the bathroom, especially. Six years later, that pain "acts up"occasionally, but now I've got frequent burning and a feeling of swelling/numbness of thelabia ALSO ON THE LEFT SIDE. Seems to me the two types of pain could be related. Is it meor do more women seem to have left-side pain than right? Incidentally, a chiropractor oncetold me that my sciatic pain was due to my pelvis being tipped downward and forward on theleft...quite possibly due to many years of toting babies/toddlers on that hip (I'mright-handed). Does this scenario sound familiar to any of you?? Thanks and good wishes toall!
CommentTo P and LB, and others interested in PN: I really like my GYN, (and trust her, enoughto allow her to do surgery on me) but she knows next to nothing about PN. I know WAY more.They are just not taught this area, and don't think about it. They go through their ownlists of dermatalogical or STD or other infection type problems, and if your problemdoesn't fit, they have no where else to go. Its up to YOU now. I hated that, but it istrue. Use your search engines, you have access to most of the same information the doctorsdo. You CANNOT trust any doctor whole-heartedly. They know what they know, not everythingthere is to know, no matter how competant they seem to be. You can only trust yourself.Why the left side? Don't know. I will say I have only heard of left sided pain, not rightsided, although the ENTIRE vulvar area is affected for me. will ask my PT I bet she has ananswer. She thinks for me it began after surgical LEEP to remove dysplasia from my cervixin March '99. Lower abdomal pain began soon after, but the vulvar pain did not begin until10 months after that. Its all connected. Since PT my hip, back and left thigh areinvolved, hopefully its all being worked through. I will stress this: Do not omit the ideathat your problem could be mechanical. Skin tissues are affected by the nerve system. Ithought and wanted my skin to be the only issue which could be fixed by a cream or maybe apill. It took months for me to figure this out. I also have high oxalates, as found out byDr. Solomons pain project test results.(Funny side note here: PT says"I don't thinkoxalates are the problem, and Dr. Solomons says "I don't think PN sounds like yourproblem") Maybe its the 2 combined that did it for me. Just don't rule anythingout,.I am pursuing both avenues of therapy. I don't know how many really well educatedpelvic floor specialists there ARE out there. I'm just thankful I found one here nearPhilly. I don't think you need a shot in the nerve to find out if the nerve is causing theproblem, just someone who knows how the female body is put together. Good luck to us all, C
CommentI was just wondering when this was going to be updated with the new entries, it's about10 days behind.
CommentHello to everyone on this list, It's been about 2 weeks since I first wrote an entry to the guestbook, and I have hadseveral requests for an update. I do have what I think is a success story to tell...I amhappy for myself, of course, but a part of me also feels bad about this because I haveread so many stories of pain and frustration. But maybe what I have to say will helpsomeone else, so here goes. 2 weeks ago I had another in a long series of pelvic exams, with the usual vaginalcultures, and a (first time) vulvar biopsy. The cultures and the biopsy all came backnegative. The difference this time: my new GYN is an excellent listener, and was willingto consider that my pain might be neurological, possibly related to the sciatica thatfirst manifested in late March/early April. In fact, the most important question he askedme (after ruling out the usual soap/shampoo/detergent/bubble bath/cosmetic/underwearchanges, of which there had been none): "What was the one most significant thing thatchanged for you last Spring, when this vaginal burning started?" My answer: sciatica,caused by degenerative disc disease in my lumbar spine, confirmed by an MRI in April. Itold him that I strongly believed my genital pain was nerve pain, because it felt sosimilar to the intense burning that I had experienced in my right leg. And, God love him,he believed me. He immediately called one of the neurologists in the clinic, who asked him to send meover right away. She is also a wonderful listener and communicator, and paid carefulattention to my entire history, which I had put in writing for both of them. She got mestarted on Neurontin, and within a week I was about 98% pain-free. She ordered anotherMRI, this time a pelvic, which I had done on Friday 9/22. The results were negative --i.e., there is no gross abnormality or mass impinging on a nerve anywhere, and she hasconcluded that my vaginal burning is the result of peripheral nerve inflammation, mostlikely brought on by my bad lower back. Neurontin is an anticonvulsant for people with epilepsy and other seizure disorders,but one of its positive side effects is the alleviation of nerve pain. My neurologist toldme yesterday that she prescribes it much more often for this purpose than as ananti-seizure medication. The optimim dose is 900 mg./day, and I am still working towardthat, gradually "ramping up" to allow my body to get used to it and avoid anyside effects. So far, I haven't felt a thing -- except relief. I have done an extensive amount of research on this condition in the last month. I amnot a doctor, but I think I've read enought to understand that there are several differentcauses of vulvodynia. I have felt all along that mine was the kind called pudendalneuralgia -- a diffuse, non-specific burning that was DEFINITELY NOT helped byanti-fungals, anti-bacterials, cortisone creams, estrogen creams, Replens, changes in oralcontraceptives...I only wish I could upload a picture of my extra-large Ziploc bag full ofhalf-used medications that did nothing for me. But I also understand that vulvodynia canbe a dermatological problem, a pelvic floor problem, a yeast-related problem, an oxalateproblem...that in other cases, it just might be helped by medications or protocols thatwouldn't have helped me. So I'm not saying "Hey everyone -- Neurontin is THE answer." I guess the mostimportant thing I've learned is that it's really important to be persistent (duh -- likeyou all don't know that already). My previous GYN handed me a referral to a specialistwhose first available appointment isn't until early 2001 -- he really expected me to wait,and spend the next 6 months with an ice pack between my legs! If I hadn't been angryenough -- and in enough pain -- to keep fighting, that's exactly what I'd be doing. I feelenormously fortunate to have found these two MDs who were willing to work with me...and Iknow how difficult it can be to persist in spite of pain and the discouragement it brings.Not to mention the lack of knowledge "out there" about this condition. I don't know what the future holds for me. This medication may or may not work forever.I am not curently sexually active, so pain with penetration was not an issue...but itmight be, some day, assuming the opportunity for an active sex life ever presents itselfagain. In the meantime, I wish some famous woman -- a glamorous movie star, for example --would come forward and "claim" this condition as her special cause. Maybe thenit would get the attention, and we would get the understanding, it deserves. My sincere wish is for a pain-free life for us all. Deborah
CommentHi, I've noticed that some of you have said that when you went to a dermatologist for skinprobs that that's when your vulvar pain started. Well i'm wondering whether this could bethe cause of mine.... I've had this condition for as long as I can remember, even as alittle girl (i'm 19 now), and alllll my life I've had eczma and my doctors alwaysprescribed me a cream called Aristocort and it contains a steroid so earlier this year Istopped using it because apparently it brings small capillaries and veins to the surfaceof the skin causing it to look blemished. I hope it is this because I hate the thoughtthat I could have been born with this (I have memories of when I was a little girl.... notbeing able to sleep at night because it felt as though someone was running razors down myvulvar area... I jsut thought it was normal because I hadnt known any different, not untilI tried having sex and realised I couldnt so I went to a doctor and she diagnosed me withVulvar Vestibulitis). Anyhow, just sharing.... I hope you are all having some luck withthis.....
CommentFirst let me tell you about myself. My name is Gino Legacy, I am 23 years old and livein New Brunswick, Canada. Now let me explain how Vulvodynia has affected my family.Shortly after my sister graduated High School in 1991, she developed the symptoms ofVulvodynia. During the 6 years she studied at university she consulted with countlessdoctors. Not one doctor could offer a definitive diagnosis, even after several biopsies.Because the doctors were unable to identify the illness, they recommended she seekcounseling. During my sister’s final year at university, our mother happened to watcha popular TV talk show. The guest for that day discussed an obscure disorder that, for mymother, seemed to describe my sister’s symptoms. She contacted the Vulvar PainFoundation and arranged to have my sister tested. The tests confirmed my sister wassuffering from high oxalate levels in her urine. Since that time my sister has followed alow oxalate diet. Most of her symptoms have since disappeared and she is now able to enjoya normal life. In fact, she has been married for 2 years and is now 16 weeks pregnant withher first child, I'm going to be an Uncle!!! We are unaware of a cure for Vulvodynia; however, with proper dieting, my sister isagain enjoying life. This post is to thank your organization for raising the publicsawareness about this disorder. It seems that Vulvodynia is becoming increasingly wellknown and acknowledged. That would not be the case if it where not for organizations suchas yours. Unfortunately, I have not found any Canadian resources on this disorder, and Iam not sure if our medical community is being educated on this subject. Obviously, thereis lack of funding for research and I do not believe this disorder is being takenseriously enough. Hopefully, your web site, and the many other non-profit organizationsdedicated to Vulvodynia and female disorders, will raise the profile of such organizations& their goals to make lesser known disorders better known within the medicalcommunity. Sincerely, Gino E. Legacy
CommentHas anyone been treated for inflamed Bartholin glands? That's what I think my problemis as they seem slightly swollen (especially on one side) and I can see a small red dot onthe side that is more swollen. I have had some sort of small lump on that side for a whilenow but when the doctor examined me she didn't seem to think that it was abnormal and ithasn't been painful until now. What is the treatment for inflammation of the Bartholinglands? And does it work? I don't feel comfortable posting my email address here so if someone could just answerme in the guestbook I'd appreciate it. Thanks.
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CommentI wanted to tell others that I used the biofeedback of Dr. Glazer''s and that it hasreally worked for me. The pain went away. I had to do the exercises regularly for over sixmonths but it was worth it.
CommentIs biofeedback only good for internal pain? Because it sounds like it would be. I haveonly external pain as there's distinct red and irritated area in my vulva. So I guessbiofeedback wouldn't help that.
CommentThis is the first time I have visited the guestbook. I am a vulvodynia sufferer andhave been searching for some answers for 7 years. When I began reading the stories in theguestbook, I began crying. I realize that I have not been afflicted with this to thedegree that some of you have. My heart goes out to all of you! I finally found a doctorwho knew about my condition and started me on amitriptyline (antidepressent). I have beentaking this drug for almost a year now, and I have not had any success. I am currently upto 30mg a day but I am having trouble operating. The drug has made me very tired andstrangely has increase my acne production. Everytime the dosage increases, so does theamount of acne. Has anyone else had this problem? Most of the discomfort I feel is duringintercourse. It has gotten so bad that my sex life is virtually null! Has anyone else haddifficulty getting "aroused"? I seem to have lost almost all of my sex drive andI'm starting to worry. Even with all the problems, my sweetheart fiance is by my side. Weare getting married next month. I truly can't believe he is still with me, but I'm verythankful. I am seeing a new specialist at UNM hospital next week. I will let you know whatthe outcome is. At this point, I don't care where I have to go to get some help! Pleasefeel free to contact me if you have any comments. I plan to become a regular visitor tothis site!
CommentTo everyone with vulvar vestibulitis! As of my posting on 9/16 I am still having about99% of my symptoms GONE. I am continuing with glucosamine sulfate, calcium citrate,rinsing thoroughly with tap water after every urination and then applying Crisco solidshortening. Besides having a drastic reduction in my symptoms, I have also had a feelingthat the tissue down there is healing and feels different. All this after 12 years !Someone please reply to my message, as I would love to be able to help someone with thisproblem. I do not have vulvodynia only vestibulitis (only, ha!) Thankyou, Lisa
CommentMy story is kind of crazy and strange.I was going out with my ex boyfriend, like for 4years we dated, and we had alots of problems so we didn't work out and we broke up about 4month ago. About a month ago now , next month i found out that he cheat on me while wewere going out and that a month before we broke up he was with this other girl and he gother pregnet, so as the story go my story and is truth that really happend to me, well sheis now 4 month pregnet as they say my exboyfriend and that girl and the employee tha hehave on his business, he own a video store, so they all saying that she's 4 month old.Well my point is and also a question, and i really want an answer from those who arereading this and from those who knows and had babies, that she's already showing, i meandevelop her belly or her big stomach, so those uselly pregnet woman show , develop at 4month or even at 3 1/2 month? you know what i always thought was women develop after 6month or 5 1/2 month, and that's all i'm worry and curious about , because if is truththen he cheated on me along way before not just from a month before we broke up, Right..... thanks for listen to me, and please if you know and can tell me about e-mail me iwill really be thanksfull to you. thrully Adriana
CommentI just tried posting, but I'm not sure if I went through so I'll try again. I've beensuffering from vulvodynia and vestibulitis for about 10 years now (I'm 33) and I've seenabout 8 doctors and tried numerous treatments (diet, Diflucan regime, creams,biofeedback). Through a combination of biofeedback, no-sugar/no-mold diet, and weeklyDiflucan I've been able to keep it under control. Before I was in constant pain. Now, Ifeel okay until about a week before my period starts -- and swell up and experience theusual symptoms for 7 to 10 days. I recently saw a new doctor (Dr. Jessica Thomason) whosaid I have lichen schlorosis. I'm not sure what to make of this diagnosis and therecommended treatment. She told me to use estrace and estring for 10 weeks (which shouldhelp the skin heal) and then I'm supposed to start a steroid cream therapy. She also saidshe'd like to take a biopsy to confirm the diagnosis. I'm nervous that adding newmedications will cause a flare-up and I'm terrified that I won't heal after a biopsy. ButI'm also terrified by her suggestion that if I do not treat this disease immediately itwill cause the vagina and vulvar to atrophy. Have any of you had this diagnosis or triedthis therapy? If so, please share your experiences with me. I find it hard to trustdoctors anymore. Thanks.
CommentRobin, I have vestibulitis. My doctor had to take a biopsy to rule out lichenschlerosis. I can understand your aprihension. The biopsy precedure was VERY painful forme. However, I stopped feeling any discomfort in about 3 days. I healed up well in 2-3weeks. One of the treatments I have tryed was the estrace cream. It did nothing for me. Iheard it is beneficial to people with lichen schlerosis, though. Wishing you the best, -L
CommentLisa, Is Crisco a brand? We have Crisco Olive Oil and stuff like that over here but i dontbelieve I've ever seen Crisco Food Shortening, although I've never really looked out forit. What is the purpose that you apply the Crisco for? Thanks, I have vestibulitis and sofar rinsing with water has brought some relief and I'm not sure about the calcium citratepills yet... I've only been taking them for a month or so, how long does it take until yousee a definite affect of the calcium citrate? Thanks.... :).
CommentFor those of you with Left sided pain. My PT, the best in the world, as far as I cantell, explained to me in detail why, if you have more pain in the left side, how itindicates mechanical dysfunction. The majority of nerve concentration for the vulva IS onthe left side. If your pain is left sided, try to see a pelvic floor specialist. If youare on the east coast go see Susan Spadt and Erica Fletcher in Philly. I have had internalmassage now only one week and I am so so much better. I am wearing underwear today. Thefirst time in months. I only hope this progress continues to normalcy. I wish the same forall of you. C
CommentTo Rebecca, sorry to hear about your breakup-hang in there. The Crisco is simply solidvegetable shortening. It keeps urine off my skin and acts as a moisturizer for me- it isalso soothing to irritated areas. The calcium takes awhile to use, but make sure you areusing calcium citrate not calcium gluconate, there is a difference in function. I alsothink I am having better results is due to the addition of glucosamine sulfate tablets toheal the damaged tissue. Keep me informed and good luck. Lisa
CommentAdriana- you either need a lot of help or you are a MEAN spirited person. The people onthis site are suffering from a very devastating condition. I won't be childish and wishthis upon you, but the thought has crossed my mind. Either get help or GROW UPLOSER!!!!!!!!!
CommentTo anyone looking for biofeedback in Atlanta, Elaine Meadows is a PT who works withsome women with this problem. Although she is not completely "studied-up" on thesubject, she is helpful as a PT and the therapy does wonders, especially just learningabout the muscles and how to relax them. She works with a group called Matrix Rehab --thenumber is 800-633-3992 nikki
CommentThanks Lisa...
Commenthallo, sollte jemand deutschsprachigen Anschlu suchen um sich mit anderen Betroffenenauszutauschen,schaut doch mal rein. http://members.aol.com/frauenschmerzoder:newsletter egroups.de Vulvodynie Liebe Gre Anja form Germany
CommentNeurontin did not work for me, so I don't consider it the 'miracle' drug at all. Also,the low oxalate diet did nothing for me either. I have not tried physical therapy yet.
CommentTo Lisa who reports that her pain is 99% gone: you say that you're taking calciumcitrate. Are you on the low-oxalate diet too, or just taking the calcium?
CommentI have had vulvodynia for 6 monthd with no success. Any recommendations for reliefwould be greatly appreciated.
CommentI have been reading your site with interest. Can someone please explain what highoxylate foods are. Thanks
CommentHello I have a question for any of you who have tried both Estrace and Elavil. Whichone was more helpful (if any)? I have only been diagnosed with VV for 1 month and I knowthat the topical steroidal stuff isn't working. It doesn't seem that those things hasworked for anybody. My urine still burns badly. I want to know what medication I shouldrequest when I go back to the doctor in a month. I am so frustrated. Thanks, Lisa
CommentLisa, You were asking about Estrace and Elavil in your last posting. I have been onboth. My doctor put me on the Estrace because steroid creams had made my skin there sothin. It seemed to help for about a week and then the pain came back just as bad. I havebeen on Elavil for about 2 years now. I started out with 25mg a day which seemed to helpme at first and then the pain came back. I went to a new doctor here in Detroit and heincreased my Elavil to 50mg a day and Diflucan once a week. I was painfree for about 3 or4 months. The pain came back about a month ago and I'm not sure why. I felt so good that Istarted working out again and started playing softball again. I also started taking slimfast. All of these things may or may not have caused the flare up. The doctor increased myElavil to 75mg a day and I have also started taking Calcium Citrate. So far so good. Ihave been feeling pretty normal lately. The only thing about Elavil is that it may makeyou really tired or it may make you gain weight. I have gained close to 25 pounds sincetaking this. But to me, the extra weight is worth being pain free. I hope this helps you.
CommentHeather- Thanks for the information about the Elavil. Lisa
CommentLisa, I have used Estrace cream now for over 2 yrs. & I'm pain-free most of thetime. I've never taken Elavil. I take calcium citrate sometimes, but I don't think thatit's had an effect one way or the other in my case. Some women do well on Estrace and somedon't. You can always try it and/or Elavil and see how you do. Good luck and I wish youpain-free days in your near-future. Sue
CommentKathy- I tried to follow the low oxalate diet, but a lot of the foods are those I enjoyor are otherwise good for you (a lot of the fruits and nuts). I had tried so many thingsin the past that I don't have the will power to follow a diet. I also was told not to usenutrasweet due to high oxalates-well I started to gain weight because I drink a fairamount of diet soda-depressing. Right now I am only taking the calcium citrate andglucosamine and using crisco solid after rinsing every time I urinate. As of this postingI still think I am 99% symptom free, and the few times I couldn't rinse I do feel slightirritation within an hours time. I feel the best I have in 12 years! By the way, chocolateis high in oxalates--now this is going too far!! Take care, Lisa
CommentIn forming a website as an educational tool for persons with sexual dysfunction, mainlywomen with vaginismus. I had the fortunate opportunity to meet Dr. Glazer. I must commentthat his medical professionalism exceeds even high expectations. He is well informed,understanding the complexities & dynamics of being a women with sexual dysfunctionmore then I could have imagined. He made wonderful comments to me on my website approachto women with vaginismus. My best suggestion for all women to educate themselves forbetter sexual health & to do it for yourself. Andrea, the Sexuality Tutor
CommentDoes anyone have experience/knowledge regarding the efficacy pf TENS (transcutaneouselectrical stimulation) in treating vulvodynia --especially pudendal nerve damage?
CommentI am 35 years old and have been a sufferer of Vulvadynia/Vestibulitis for over tenyears. I have seen up to 12 doctors in three major cities, had two partial vulvectomies,tried many creams, lotions and jels, tried interferon shots daily for four weeks, specialdiets, antidepressants for pain management, 5% lidocaine for numbing, and probably othertreatments I no longer recall. I have been a frequent visiter of this site but have nevercontributed. But something has happened in the last month and a half that I would like toshare and ask if anyone has tried this 'treatment'. My family doctor prescribed Tofranil 25 mg for an unrelated problem (frequent urinationat nighttime, that kept me up all night long). He said the medicine was an antidepressantthat is used on children for bedwetting. The med, as I understand it, relaxes the bladdermuscles which eliminates my urge to wake up in the middle of the night. Anyway, it'sworked wonders since February of this year. THE ODD PART, in the last month and a half myhusband and I have experienced normal sexual relations! It's been more than ten yearssince we've experienced it! I was always told that VV might mysteriously 'go away' but Ijust can't believe it. Can it be the medicine? Has anyone heard of it used before? Hasanyone tried it before? Please respond. Thank you.
CommentNancy, Tofranil is an antidepressant also known as imipramine. Several Drs have used itin place of amitriptyline for treating vulvodynia. Glad you are getting some relief withit. I had to discontinue using amitriptyline but I will ask my Dr about the imipramine.Thanks.
CommentI am 19 years old, and have been married for only 14 months. I first felt pain duringintercourse 2 months after I got married. Like many others, I never had sex before I wasmarried, and this was a BIG shock/dissappointment. Thanks to the persistence and patienceof my husband, I have been in treatment for Vulvar vistibulitis for almost a year now. Iam getting ready for shots in about an hour. Really hoping this will take care of it, butwe are also willing to go as long as it takes. I will let you all know how it goes, and ifit works. I am going to the University of Washington Women's Clinnic in Seattle, whichseems to be very familiar with this problem. Thanks for this place to vent, and findsupport in those around us. Any comments or suggestions are totally welcomed if you wantto email me or anything. Let's hear it one more time for our wonderful husbands! -Faith Stevens
CommentThis message is for C.P. I had my first appointment at OHSU with Dr. Goetch. She wasvery nice and she listened to me. She started me back up on Amitriptilyne and I haveanother appointment with her on the 17th of October. She wants to see how theAmitriptilyne works and she said some other options would be to see a physical therapistat OHSU. There isn't a long waiting list (they have 4 doctors now who specialize in vulvarpain). She gave me alot of hope. Feel free to email me. I can give you all the info forOHSU. I hope this helps and to all the ladies suffering, I hope you have more good daysthan bad...We WILL Beat This!!
CommentI personally took care of the little twit puta/pendeja "Adriana" the"crazy cuban girl," as she very accurately calls herself via her e mail. Postingstupid, fake- accented, broken English boyfriend troubles on this site is absolutelyuncalled for. We shouldn't be hearing from her ever again. Trust me.
CommentFor the person that believes in the low oxilate, crisco, water rinse thing, and ofcourse everyone else reading this...I 100% believe that rinsing with water and coveringyour vulva with crisco to protect it would make most of the women here feel significantlybetter. In fact just the water alone would be my recommendation, because the crisco couldlead to the blocking of pores down there, and a pimple on your vulva is no fun. BUT, Iwant to say again that I think many times this is caused by bacterial infection. I believethe rinsing with water is cleaning off your discharge that is making you red andinflammed. That your urine is not the culprit, but that when you urinate it is likepouring salt on an open wound. Also, someone wrote they are taking one of the try-cyclic/antidepresents for this for ayear without much relief. That means it is NOT WORKING. Move on to something else. Don'tstay with a treatment that doesn't work, you will never get better, switch doctors. Mostdoctors are in a little box, with a very closed mind.
CommentLisa, you said something about glucosamine sulfate tablets right? Well the other dayDad was showing me his Arthritis treatment and it was glucosamine sulfate tabs??? Also I have notice significant differences since I started rinsing with water aftergoing to the toilet each time. I've also been using sorbolene cream instead of soap when Iwash in the shower.... that has made a big difference too.
CommentHi everyone, I'm the one who blew up a couple months ago, I got rather upset and I want toapologize. I'm the one who found relief from magnets, in guestbook 13. I've not read any posts since, I quite frankly probably won't. I don't want to readanymore negative comments about me. Anyways, on with my apology. The internet gives us "freedom" and anonominity(sp?) to act and talk in ways we normally would not. I am sorry for any insults I may havedirected toward anyone and for any other negative comments. A close follower of the guestbooks for quite a while, I was getting a little tired ofthe bickering and bantering that had started to invade the site, and when it was directedat me, I got upset and blew up. This is not an excuse I am trying to use, but a reason forwhy I acted the way I did. I hope the judgemental attitudes and "cattiness" hasleft the site. I've been wanting to apologize for a while, and every now and then I think about it. Mycomputer is dead and has been for months. So, the few times I get on the internet, i justhaven't had time. Well, time to go. Good luck everybody!! Rebekah
CommentWell, I had a couple minutes, so I skimmed over a couple entries to get the jist of howthings are going now. I noticed a lot of people talking about "rinsing" afterurination and how to do it. After I had my baby, I was given a "peri-bottle" torinse my perinium because of my epesiotomy. I don't know where you can get these, maybe apharmacy or a delivery ward in a hospital. These bottles would work great, that's whatthey're made for. They're thin plastic, small enough to put in your purse, and aredesigned to squirt right there where you need them to. That's all. Rebekah
CommentHey Everyone! I'm feeling much better. I'm almost afraid to post this in case I jinxmyself. I have been rinsing with water with one pkg of domboro in it. That helped alot thewater alone didn't do anything the burning would start up again.Last Sun I started a dietwith a weight loss program. Right now they took me off all sugars and sodium. About Wed Irealised my burning and irritation are gone and I haven't rinsed since then.I even noticeI'm interested in sex. We haven't tried yet cause I just started my period, I usually haveeven more pain with my periods and I'm not. Seeing as I have problem with yeast I'mthinking that the carbs and sugars ( I ate alot of cereals, crackers, breads and sweets)may have been adding to my problem. I even notice the odor done there is gone. Will keepya'll informed on how I'm doing and how sex is once we do it. Keep your fingers crossedfor me. If I stay pain free this would definitly keep me off the carbs and sugar. And totop it off I even lost 4lbs in a week. Good luck to us all! Chris  |