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CommentHi Lois: I had HPV also and had them removed by laser, but my burning all startedBEFORE I had the warts removed. I'm also in menopause now and that doesn't seem to helpmatters either. I hope you find the help you need for pain relief soon.
CommentWelcome all guests to the eleventh vulvodynia guestbook. Thank you all for yourcontinued interest and support of the vulvodynia.com website Howard I. Glazer Ph.D. vulvodynia.com site owner
CommentLois, My symptoms started after I was treated with an acid for supposed veneral warts.I was never the same after that treatment. I unveiled my history a few messages back if you are interested, but I had left offwhat I thought the cause was. Thought you might be interested.
CommentI have had vulvadynia for 3 years. I have been taking Effexor and following the LowOxalate Diet, but recently, I discovered Prelief on this Guestbook and tried it. It hashelped a great deal!!! I even tried having foods that I know cause burning and so far, Ihave not had any burning. I take two caplets before meals and I have been feeling verygood. It's worth a try. Prelief can be purchased at most drug stores. It's by the samecompany that makes Beano. It's the only supplement that has helped me in 3 years. Maybe itwill help another sufferer.
CommentI have had vulvadynia for 3 years. I have been taking Effexor and following the LowOxalate Diet, but recently, I discovered Prelief on this Guestbook and tried it. It hashelped a great deal!!! I even tried having foods that I know cause burning and so far, Ihave not had any burning. I take two caplets before meals and I have been feeling verygood. It's worth a try. Prelief can be purchased at most drug stores. It's by the samecompany that makes Beano. It's the only supplement that has helped me in 3 years. Maybe itwill help another sufferer.
CommentIn May 1999 I was diagnosed with Vulvar Vestibulitis. I am grateful that there isinformation on the Web. This is the only place I've been able to find extensiveinformation. Thank you.
CommentThe website for Prelief is www.prelief.com It includes letters by IC sufferers who sayit helps, I tried it for the vulvar burning and it has helped me.
CommentThis message is to anyone that is considering surgery, whether it be laser,vestibulectomy, whatever! Please, please do your research before you make the decision tohave surgery. You need to really think it through, and be aware of all the ramificationsthat surgery may bring. Research the doctors and medical facilities that will be involved,and get plenty of feedback from previous patients, if possible. I have heard plenty ofaccounts of women that say that they are healed from vv as a result of surgery. However,there are also many women that are either developing vv as a result of surgeries, or arehaving surgeries that are only making the vv worse!!! I wish I had done my homework before I decided to have laser surgery in 1993. At thetime, I had not yet been diagnosed with vulvodynia, although I was constantly havingproblems with what they thought was yeast, etc (although nothing would show up on theslide). I was, however, diagnosed with HPV (warts) and was told the best way to rid of theprecancerous cells was with C02 laser surgery. I thought that this GYN doctor was anexpert in the field, and I even consulted with the medical director of the medicalfacility to get his opinion. Unfortunately, I went through with the surgery, and it endedup being "botched." The doctor ended up burning off more tissue than he neededto, and as a result, I have pinkish-red strawberry spots of tissue that have never healed.This particular doctor could not figure out why it was not healing, and passed it off asemotional stress. When I finally was diagnosed with vv in late 1993 (by an excellent specialty GYN at UCSanta Barbara), it was thought that the laser procedure that was done 6 months earlier maynot have been necessary. Other procedures could have been used. In fact, much like Lois'entry above, I too would have to agree that the laser was THE BIGGEST CONTRIBUTING FACTORTO THE WORSENING OF MY VULVODYNIA. It is hard to say whether I had vv before the surgeryor not, but the laser is what really set the vv symptoms off!!!!!! In fact, I had such badsymptoms while I was at UCSB (raw, burning vulva, torn perineum, "paper cuts "invarious areas, stabbing pains, etc) that my doctor recommended two other possiblesurgeries, vestibulectomy and flash pump dye laser. It has been nearly 6 years since that recommendation, and I am still in debate as towhether I want to go through with another surgery. Luckily my symptoms are somewhat mildthese days. However, it is my personal belief that the laser surgery is what set my vv offin the first place, and I do not think that I will ever be able to put myself in that kindof a vulnerable position again. It breaks my heart to see us women struggle on thisguestbook everyday, trying to make these life-altering decisions while there is not enoughresearch out there yet to substantiate many claims!!! There has to be an answer other thansurgery!!!! FYI: I will be emailing Oprah Winfrey soon...if enough of us yell, maybe someone willfinally listen!!! Take care...my heart goes out to all of you!!!!!
CommentLois, I wanted to tell you that my vulvodynia started with an acid treatment forveneral warts. I was never the same after that treatment. I put my history out here about a week ago, but I didn't put in the cause. I am not cured yet. Hope this helps.
CommentI have been diagnoised with vestibilitus for one month,I have been suffering from thisfor the last year. It is nice to know I am not going crazey , there are others just likeme.
CommentWhere is the 10th guestbook?
CommentFound the 10th guestbook! Yeah! I was wondering if anyone else can tell almostimmediately that your VV is going to be much worse. I have some good days and then all ofa sudden within a few minutes, I can feel it coming on and within a few hrs, I am backwhere I started. It seems so strange. Good luck to all of you out there!
CommentTo Lois (above). Don't despair. I had similar problems going from Dr to Dr and notbeing believed. What I did was print out all the information I could find from the Net, aswell as a couple of pages from this bulletin board, and took it to my Dr and made him readit. He admitted that he had never had a patient with vulvodynia before and seemed verysceptical about it all until he'd read all the info I gave him, then he changed his tune!Ask your Dr to refer you to someone more specialised (he can make enquiries for you, oryou can phone around to hospitals, clinics, etc. yourself) - you will find someone whounderstands. Take your info from here with you. Don't give up. I am the same age as youare, and yes, a fulfilling sex life should NOT be over for us at this age! Good luck.
CommentTo all- I am 21. I was diagnosed a month ago. I have dysesthic vulvodynia. I was toldthat this is the type that most women in premenopause or postmenopause get. I have hadthis for 1 1/2 years. In that time I have found a few things that sometimes help with painrelief. At first, I was using a lubricant like KY jelly. I now am using Vagisil. It islike a natural lubricant. It has aloe in it. There is also Astroglide and it has the samestuff in it. In my shower I sometimes use Summer's Eve body wash. I use Summer's Evefeminine wash everyday. Sometimes after I use the restroom. I use the Summer's Evefeminine wipes. I do not drink pepsi or anything like that. I habe noticed that gives meburning. I usually drink milk, tea or water only. Please don't give up I hope. I hopesomeone finds a cure or some relief for us soon. Like Most all of you I would like to makelove to my soon to be husband. We just have to speak. And be heard by dr's. I tried totell my dr. I had IC. She would not listen to what I had to say. So make sure they listento you. It seems to be like we all are trying to help ourselves.
CommentI'm surprise with the number of people that have my same dissorder and pain. I'm fromArgentine and during the last two years I had visited about six doctors and anyone couldgive me a diagnostic. Recently on December I found a doctor (and professor at theUniversity) that diagnostic the Vulvodynia. Now I find that my situacion is worst that Iimagine, but I know what is the problem. Thank you for the information and I think it willbe useful a page or a site in Spanish with the information. Marina.
CommentEnjoyed your site...!. The mine is the best. www.altogallego.com
CommentI have been suffering from Vulvadynia since July of 1999; One month after my 28thbirthday I began to suffer from it and was diagnosed in September of 1999. What I wouldlike to know is what reasearch is being conducted to actually try and find out what causesthis problem. While it is great that everyone writes to these guestbooks, and tries tohelp each other with what knowledge they have come by through their own trials and errors,I want to know what causes this problem. It seems that no one knows and I am not satisfiedwith that. I am about to start my own website where women can come to read information onwho to lobby and how to do it. It seems to me that is lacking severely!!!!! Why are thereso many hundreds of thousands of women who have this and yet no one is trying to find thesource of the problem. All of these so called treatments are worthless if they aren'trelated to what actually causes this "disease". Isn't there anyone else outthere who is tired of living they way they are forced to live. I am tired of being aguinea pig to all the doctors theories??? If you are intersted in being more involved inlobbying the research companies and pharmacuetical companies as well as the NIH andCongress to demand that they start funding for research for a cause and cure forVulvadynia please feel free to email me. AOL has a silly little rule that no body partscan be used in the screen name you choose. Hence the funny spelling in the email address Ihave posted. Please email me at vulvodyniapain@aol.com. I will answer every emailsent.-Lauren
CommentHello again ladies!! I posted an entry in the last guestbook a while back, but I wanted to write again andshare my story of what I've been thru in the last few years. I have both endometriosis andvulvodynia. Living with the endometriosis In Nov of 1996 (at the age of 25) I was diagnosed PCOS, and about 2 weeks later Istarted having very intense pelvic pain that I thought was due to a pulled muscle. Thepain continued for several months and after having gone to my family dr they thought itwas ovarian cysts. As this pain continued to get worse, and to the point that I couldn'tsit or stand without intense pain. The way to describe this pain is that it was ten timesworse than a normal menstrual cramp. I was laid up in bed for several months while tryingto get the answer to this pain. This pain would make me feel like plastic was being pulled away from my skin whenever Iwould get up from a chair after sitting too long. The endocrinologist that treated myovarian cysts suggested that I should see a gyn but for several months after he made thatrecommendation I didn't do it b/c I was of the opinion that I was too young to go. In theSpring of 1997 I went to a GI dr who wanted to run tests to make sure that it wasn't GIrelated but I canceled the tests b/c the pain that I was having was too low for where theywere saying it was. By June of that year I went to my second gynecologist. She and a ReproductiveEndocrinologist took me in for my first laparoscopy, and I was diagnosed with endo on Aug8, 1997. Five weeks after that surgery the RE put me on continuous bcp. From that time onI had a hard time trying to find the right pill to keep the breakthrough bleeding down. I went almost 2 years without any pain from the endo, and when it started it affectedmy school attendance at the college that I was attending to become a medical secretary. Ittook some time to make the teacher understand what was going on, and in June of 1999 I hadmy second laparoscopy under the care of a different dr (a regular ob) who is so caring,and understanding. It has been almost 9 months since that second laparoscopy, and I'm painfree from the endo, and hoping that I can go along time without the pain. Life with the vulvodynia In March of 1998 when I went in for my physical with the last gyn that I had I told himthat I hurt at the opening of my vagina, but after I told him about it he just told methat I probably had a tender cervix, but I knew that something was wrong with that. Then when my second lap to check for the endo was scheduled for June of 1999 I startedto notice something quite different. I had some very intense pain my vulvar area the nightbefore that second lap and was confused as to what was going on, but I knew that when Itried to insert the tip of the douche bottle that I was required to use in preparation forthe surgery it hurt a bunch. I did manage to get the tip inside of me but it took a greatdeal of effort. Two weeks after that lap I let my ob know that this pain was happening, and I thoughtit was b/c of the catheter that I had during surgery. Well from that point on I startedgoing thru several rounds of infections. The cycle of infections since Jul of 1999 hasbeen yeast infection, UTI (urinary tract infection), Bacterial Vaginosis, and Vestibulitis(Diagnosed in Sept). During that month of Sept was when I was diagnosed with vulvodynia. The thing that frustrates me the most about these infections whenever I get them is Ihave some very intense pain, and in recent months I would always feel it in my groin area. I did have a break from the infections for about a month before it started all overagain in Nov, and has continued in to this year that included two kinds of bacterium thatdidn't go away until the second course of antibiotics that I completed back in Feb of thisyear. I was really hoping that the year 2000 would be one where I didn't have to spend timein the dr's office but starting in January I've been back to my ob due to the vulvodynia.I've been in constant pain since from the vulvodynia for almost 3 months straight startingin Dec of 1999. Now in March of 2000 I have no infections but tons of vulvar pain, and the reason forthat is b/c the level of my pain has gone to a new level and I don't have an infection atthis time. My hope is that there will be a cure for both of these very painful, disabling, andfrustrating conditions. In the mean time the only thing that we can hope for is ways totreat the conditions as far as suppression and relief from pain. I have had both endo and vulvodynia for 2 years, but in the case of the vulvodynia ittook exactly 2 years to be told what I had. My goal from now until there is a much neededcure for both conditions is to educate as many people in the public, and to offer as muchsupport as I can to all ladies who suffer from one or both of these conditions at the sametime as I do. I try my best to cope with each of these conditions, but sometimes the things that comeup while I try to cope doesn't always make it easy for me but I try to take it one day ata time. Taking it one day at a time will always be a challenge for me, but in the end Iknow that I will succeed, and to those of you who read this story please know that you arenever alone. Please feel free to e-mail me directly if you need support, or have more questions forme. I also want to let you know that I had sent a note back to the owners of a site calledobgyn.net (they focus on women's health providing information for both doctors andpatients, and medical industry such as the pharmaceutical companies) to ask them to pleasedo something about vulvodynia. I got a note back from the editor of the site yesterdaysaying that they would be doing something on vulvodynia, and would I mind telling my storyabout what it's like to live with both of these conditions. The story that I sent in to them is the one that I just posted here. I wanted to giveyou all a chance to read it before it got posted next month. As soon as it is posted alongwith the other info about vulvodynia I will write again to give you the link. In the mean time if you would like to check out what this site for women's health hasto offer when it comes to other aspects of women's health just go to: As far as treating my vulvodynia my dr and I decided on Tues that it would be ok for meto try the Premarin and steroid creams for a spell to see if it helps my symptoms.Thankfully this time around I don't have any infections. I'm tired of them, and going thrutwo rounds of infections was real rough on me. I will let you all know how I do with this regimen. I really want for it to work b/cthis thing has controlled my life very tightly for more than 6 months, and what is worseis that now I know that the vulvar surgery I had in 1997 to correct a problem with oneside of my vulva has caused this thing that I will have to always live with until thatcure comes. I wish everyone a pain free rest of the week. Also please know that anyone is free toe-mail me privately at any time. I am always available for those who just need to talk. Please take care everyone.
CommentHi, Ladies--This is my second entry in the guestbook since writing about a year and ahalf ago...I used to live in the Austin, TX area and want to share some information withthose of you who live there and are needing help/relief from your vulvodynia symptoms. To give you a little background, I have had vestibulitis/vulvodynia problems since Iwas 19 (I am 26 now). I think the problems began with Monistat 7, but I also think thatabnormal vaginal muscles contributed a lot. I had a vulvectomy (not laser) when I was 19and that helped. When I was 24, I had a reoccurence of vulvodynia--it was awful and I canempathize with everyone who sits in constant pain all day long and has problems withsexual intercourse. I was lucky enough to get an e-mail from someone who read about me onthis Web site, so now I want to help you. It was recommended that I go see Stephanie Hahn, a physical therapist in Austin who hasa support group and does specific work with vulvodynia patients. I had my regular gynorefer me to her and my insurance covered the visits--which was very lucky. When I began,my vaginal mucles were very tight and painful to touch, but with Stephanie's help over thecourse of a few months, they began to relax and the pain to subside. I think that peoplewho have very tight leg/back/thigh muscles might be prone to vulvodynia and may notrealize that the burnign is caused by these tight muscles. Long story short, it worked wonders. I got a biofeedback machine that I usedreligiously and still use occasionally. I have been able to have pain-free intercourseagain and am very grateful to Stephanie for her help. I highly recommend talking to herabout your options--her staff members are also very nice in dealing with insurance issues.You can contact her at 512-458-1183--maybe she can point you in the right direction if youdon't live in the Austin area. I pray every day that my problems do not come back, but with biofeedback I really thinkthat there is a way to control vulvodynia. Good luck to all of you women out there--don'tgive up on getting better!
CommentTo Melissa in WA State -- where are you located? Email me directly with your locationand the kind of specialist you're looking for. I've seen all sorts of people for this andmight have some names to give you.
CommentMy vulvodynia began when I experiencing great stress in my life. During that time Inoticed vulvar burning which I feel was purely psychological in origin. Has anyone elsehad such burning, that they feel is directly linked to stress? And if so, besides retiringfrom life which itself is stressful, what have they done to eliminate the burning?
CommentI too am very glad to see that other women are experiencing the same thing I am. I am24 and have had volvodynia pain for about 3 years. I can't really say what I think mighthave started mine, but I sure wish they would find a cure. I have some good days, but morebad days. I recently got married in Feb. 1999 and I am very thankful that my husband is sounderstanding. I really haven't found anything that makes a difference with me, it seemsthat the days I do feel good, I can't link it to anything particular. I have anappointment to see Dr. Glazer in April. HAS ANYONE ELSE BEEN TO SEE HIM AND RECEIVED HISTREATMENT? If so, please e-mail me I would really like to know your outcome. I live inTennessee and would hate to drive all the way to New York for nothing. I pray for everyonewho suffers from this horrible disease. I wish everyone the best in finding something thatwill work for them.
CommentI too am very glad to see that other women are experiencing the same thing I am. I am24 and have had volvodynia pain for about 3 years. I can't really say what I think mighthave started mine, but I sure wish they would find a cure. I have some good days, but morebad days. I recently got married in Feb. 1999 and I am very thankful that my husband is sounderstanding. I really haven't found anything that makes a difference with me, it seemsthat the days I do feel good, I can't link it to anything particular. I have anappointment to see Dr. Glazer in April. HAS ANYONE ELSE BEEN TO SEE HIM AND RECEIVED HISTREATMENT? If so, please e-mail me I would really like to know your outcome. I live inTennessee and would hate to drive all the way to New York for nothing. I pray for everyonewho suffers from this horrible disease. I wish everyone the best in finding something thatwill work for them.
CommentI have written in before. I have had vulvadynia for about 1 1/2 years. I stronglybelieve that it is linked to stress. When it started I was 6 months away from my wedding,starting a new job, buying a house and stressed about leaving my Mom alone in her house.It was just me and her since I was 14. She is older (72) I am 28. My father passed awaywhen I was 14. My sister and 2 brothers are all in their 40's. They were all married andmoved out ages ago. I do not handle stress well at all. In fact, when I was graduatingcollege at age 23 I got the shingles from being so stressed about tests etc. I have foundthat amtriptyline 25mg a day has helped me a great deal. I also avoid acidy foodsespecially tomatoes. I also find that shampoo is irritating. I use J&J baby shampoo.Glycerin soap, but only water in that area. Northern toilet paper. I have found thatEckerd Drug brand zinc oxide helps a great deal. A very thin amount every day. Only wearcotton underwear and pants. I have stopped using tampons. I used to only use tampons. Ialso stopped having relations with my husband, we usually used latex condoms. I amthinking of trying lambskin. I tried birth control pills, but I feel it made the burningmuch worse and my mood was awful. Latex can cause allergies. I actually met a woman whereI work who had this same problem for a year and a half. She said it went away. She swearsit was from stress. She was going through a divorce at the time. Her doctor gave herpremarin cream. I have not tried it yet, but she said it helped. I feel better knowingsomeone that had this and it went away, so I wanted everyone to know that there is hope.
CommentI HAVE HAD THIS HORRIBLE CONDITION FOR FOUR YEARS WITH NO RELIEF.IT IS NICE TO FINDSOME INFO ON IT FINALLY. I HOST A CHAT ON AOL ON WED AND SUND. FROM 7-9 EASTERN TIME PM.ANYONE IS WELCOME TO COME, IT IS AOL PRIVATE CHAT, TITLED VULCHAT. HOPE TO SEE SOME NEWFACES
CommentI don't know if this is what I have or not. I was looking on the net for vaginal painand I keep coming to this condition. I have pain in my vagina, whether I'm having sex ornot. I also get very, very, very itch right after my period for days! It drives me insane!Sometimes the itchiness really hurts as well. I was diagnosed with HPV in the fall. I hada biopsy and then she (gyno) had to freeze my cervix to remove the dysplasia from mycervix. I also have recurrent urinary tract infections and yeast infections. I don't thinkI'm as severe as some of the women who posted on here, but if someone can please tell meif this is what it sounds like. I don't want to go to my doctor and say this is what Ithink I have and not have it! She just rushes you in and out as it is, so I'd like to besure of my facts before I see her. Thanks
CommentLISA NOTE THERE IS ALSO A YAHOO CLUBS SITE FOR VULVODYNIA(CLUBS.YAHOO.COM/CLUBS/VULVODYNIA) WHICH ALSO HAS A CHAT ROOM AND YOU CAN POST THERE TOO.HOPE TO SEE YOU THERE SOMETIME!
CommentHI. I'm not too sure if this is what I have or not. I've been getting pain for a whilenow and I've looked up vaginal pain on the net and this is what keeps coming up for me.I've had HPV, one wart, which she scraped off. I've had the colopscopy, the biopsy, andthe freezing of the cervix. I get very, very, very painful itchiness after my period everymonth! Sex does hurt, I'll be in pain for a couple of days after wards, which is veryuncomfortable! If this sounds like any symptoms can someone please tell me? I want to goto my family doc, but I want to have the facts straight before I go to her. I sometimesfeel like she thinks I'm wasting her time or something!
CommentI just had a second visit with a "specialist" with regards to my previousdianosis of Vulvar Vistibulitis. After an exam, she prescribed a cream "cromolyn 2%in a glaxal base". It's the cream form of the medication that asthma patients take toreduce the inflamation in their lungs. Has anyone ever tried this medication?
CommentHi Everyone, GOOD NEWS I NO LONGER HURT! After years of suffering with burning,stinging, painful sex, irritated vaginal and anal area, sensitivity, etc. I've foundsomething that has helped/saved me! I'had been using premarin vaginal cream, premarintablets, anti-depressants, pain medication, anti-inflammatories for Fibromyalgia. As youknow, vulvodynia is only one of the painful side effects. My symptoms were getting worse,two GYN's could/would not help. One female gyn actually said she didn't want to talk aboutit! In desperation, I spoke to my pharmacist; she suggested ESTRATEST H.S. which is ahormone, but also contains tostesterone. The dose I'm taking is supposedly not high. Mypharmacist was very encouraging and said there was no reason I should be suffering. I sawmy G.P., a wonderful, very open doctor. He said, yes, estratest H.S. would help my labido(I had fear of pain). Well, this not only helped but has actually healed me! It takesabout 2-3 weeks to kick in. Of course I've had to give up all dairy products. I've beenable to cut my medications in half. For the first time in many years I no longer hurtafter having sex with my husband! I enjoy it! He loves it! It's a whole new experience forme! I hope this helps other women that are suffering - I've had this condition off and onsince I was in my 20's and am now 53. I had breast cancer 7 years ago and skin cancer twoyears ago in the area between the vagina and anus; I'm convinced the second cancer was dueto the thinning of the skin and because of all the irritations I've suffered throughoutthe years. I'm still going in for checkups every six months. I'm not afraid of thehormones. Good luck to all of you.
CommentHow do you know if you have it? I have endometriosis,irregular bowel syndrome,and lotsof yeast infections with lots of pain so what does that mean?
CommentAlthough I only developed vv about 1 1/2 ago, I had been diagnosed with fibromyalgiatwo years previously. However the pain in my arms/wrists etc. from the fibro seemed likenothing compared to the severe vular pain and burning. Within two months of beingdiagnosed I began taking guaifensin. It took another month to find my proper dosage and Icycled fairly hard for another two months with the vv and off and on for much of thesummer. But for the last 6 months I have been largely pain free and when I do cycle itusu. lasts for only a few days and it is VERY slight compared to the pain I was firstexperiencing. For anyone who thinks their vv is related to fibromyalgia I would stronglyrecommend trying guai. I did not recover instantly, it has been a very slow process and Iam still cycling, but I feel like I have my life back-- something I did not have a yearago.
CommentI have just finished drafting a letter to a doctor who said it was all in my head. Idon't think I can send it, but I thought you'd all enjoy it. If anyone thinks I shouldmail it, please let me know. I think I'd have to take out the "fuck you,"although that part is my favorite. Dear Dr. C., For five years I was your patient, and forfive years I complained of pain during every pelvic exam. You would have to coax me totowards the stirrups and plead with me to open my legs just so you could perform the exam.When I finally asked you about it you prescribed estrogen cream, and two months later youcharged me $100 to tell me that you had known all along that I had vulvar vestibulitis andthat the condition was caused by stress and not treatable. Let me now explain to you why Iwill not be visiting your office anymore. First of all, if you had been up to date in yourreading, you would know that the as early as 1993 the American Journal of Obstetrics andGynecology published an article suggesting the pain on contact seen in vestibulitis wasoften caused by myofascia of the pevic floor muscles. The Journal of Reproductive Medicinepublished an article in 1995 documenting the success of biofeedback therapy on the pelvicfloor; this approach has been shown to reduce the pain caused by vestibulitis by over 80%.Shall I continue? Last July I went to see Gae Rodke, a gynecologist affiliated withColumbia Presbyterian who has published articles on the treatment of vulvar vestibulitis.The first thing she did was to take a culture to see if I had a vaginal infection. I wasso surprised by what she told me that I had to look at the slide for myself. There were noyeast buds; I was overrun with bacteria from the acidophilus capsules I’d been takingfor years to rid myself of the chronic yeast you had been supposedly diagnosing on sight.She prescribed a treatment exactly the opposite of the treatment for yeast (antibiotic, noacidophilus capsules and less yogurt, baking soda douche) and I immediately found somerelief Dr. Rodke immediately referred me to Dr. Howard Glazer, a pelvic floor specialistwho is affiliated with Cornell Medical Center. Dr. Glazer used surface electromyography toassess the contractile strength and resting tension of my pelvic muscles and found thatthey were drastically abnormal. In addition my vulvar area was full of cuts that were toosmall to see. Dr. Glazer treated me according to the protocol he and Dr. Rodke publishedin the 1995 article on treatment of vulvodynia which I mentioned above. After severalmonths I have been able to have sex without crying out in pain. No doctor knowseverything, and if you had just told me you weren’t sure what we should do and agreedthat it was important to help me I would have been happy. Instead, I told you that I hadNEVER experienced sexual intercourse without pain and I was desperate to feel normal andbegged you for help and you laughed and said I should relax and the pain would disappearalong with the stress. I was suffering so badly that even having you touch theBartholin’s glands with a Q-tip sent me screaming. Why didn’t you listen? Was Inot important enough to you or were you just so unsure what to say that you turned it intoa joke? Maybe you just really have not picked up a journal in the last decade or you skipthe articles that don’t involve people who can sue you. Maybe you just hated me.I’m not asking for answers, just that you never ever turn someone away with chronicvulval pain by telling her it’s stress or imaginary. When you became an OB/GYN youmade a commitment to women and the care of women. You let me down considerably, you mademe feel like a freak, and to top it all off you charged me ridiculous Park Avenue pricesfor substandard care. Please learn from my experience and take every patient seriously andtreat her with the care you would give someone who was personally important to you.Knowing you, I am sure you are reading this and laughing and thinking I am exaggerating orthat I don’t know nearly as much as you because you have been through medical school.If that is the case I have nothing to say except go fuck yourself. Maybe if you causeyourself pain you’ll take the rest of us seriously.
CommentTO DK: I SAY SEND THE LETTER. THAT BASTARD DR. DESERVES EVERY WORD OF WHAT YOU HAVESAID. I CAN'T EVEN COUNT HOW MANY INCOMPETENT DRS. TOLD ME THAT THE VULVAR PAIN I WASEXPERIENCING WAS ALL IN MY HEAD!!!!!!!!!!
CommentTo DK: I say send the letter, it will make you feel better. I don't think that thedoctor will ever see it. He probably has someone review his/her mail before he/she readsit, so it will be stopped there. I sent letters to all my previous doctors, not as strong as yours, because I wanted tomake sure that they knew what the diagnosis was. This was partially for me, but also fortheir other patients. I never received any feedback from them that they read it, but itdid make me feel better.
CommentTo DK, I agree with the others. Send the letter. Even if the letter never reaches the doctor,you just never know what may happen as a result of your sending it!!! Maybe someone willlearn something new or discover that they know someone with the same symptoms!!! You justnever know...and I believe, as sufferers, it is our responsibility to educate as manypeople as possible about this condition!!!! GO FOR IT!!! Also, have you considered emailing Oprah Winfrey? Many women that post to this sighthave sent her email requesting that vulvodynia be considered for a show topic!!!
CommentDk, Do send your letter when I read it that reminded me of all the incompentent GP's andGyns I've seen through the past year not one of them has been able to diagnose my vulvarpain. One of them said it was a syndrome and I had to live with it! I live in the UK and Idon't know how the doctors are in America but here they are pretty bad. When I carried onbeing in pain after having been treated with yeast infection, they gave differenttreatements and creams, antibiotics, yeast infection treatments, clotrymazole, steroidsthat made things worse I could not even wear underwears because I was in so much pain. Thelast gyn I saw gave me oestrogen cream that is helping me a great deal though I stillcan't wear jeans, pants, tights and I cannot have intercourse with my boyfriend. Though Imust say that my pain is not that bad compared to all the stories I read on this site. Iadmire you all for being so brave!
CommentDk, Do send your letter when I read it that reminded me of all the incompentent GP's andGyns I've seen through the past year not one of them has been able to diagnose my vulvarpain. One of them said it was a syndrome and I had to live with it! I live in the UK and Idon't know how the doctors are in America but here they are pretty bad. When I carried onbeing in pain after having been treated with yeast infection, they gave differenttreatements and creams, antibiotics, yeast infection treatments, clotrymazole, steroidsthat made things worse I could not even wear underwears because I was in so much pain. Thelast gyn I saw gave me oestrogen cream that is helping me a great deal though I stillcan't wear jeans, pants, tights and I cannot have intercourse with my boyfriend. Though Imust say that my pain is not that bad compared to all the stories I read on this site. Iadmire you all for being so brave!
CommentI was diagnosed with vulvar vestibulitis 1 year ago. My doctor has sent me to a urogynspecialist. This new doc has prescribed clobetasol, a corticosteroid used for lichensclerosis. I wonder if anybody elses doc has prescribe this for them or any other steroid.So far the med has not worked at all and I've actually gotten worse. Please tell me ifsteroid therapy helps or hurts this situation and your experiences with it. The doctorthought this was going to be the miracle cure for me and so far it has been a total flop.
CommentOk Ladies you aren't going to believe this one. I had an email exchange with a reporteryesterday and today. She is from WebMD. She tells me that the NIH was offered funding forresearch for Vulvadynia and turned it down. Flat out said NO, we only want to do researchon life threatening diseases. I don't think I need to express my thoughts on this one.Please send me email if you are interested in a mail campaign to bombard the NIH withpersonal letters telling them that they have no right to turn down funding, that they haveno right to pit one medical problem against another, that they have no right to turn downmoney when we suffer so greatly on a daily basis. As well I am attaching a link that willtake you to the page where you can send email to a producer at Oprah's TV show. I sent anemail today. I told them about the NIH refusing to conduct research and turning awayfunding that they were offered. If they get enough email from us (at least 1000 emails)within a weeks time, they will have to take notice and will be interested in running ashow on this topic. Please send an email to them. You don't have to give your full name.You can choose to leave only an email address to be reached at. But I ask that you arebold and are willing to talk to someone if they want to call you. If they decide to run ashow on Vulvadynia they will change your name on air if you decide to be interviewed oncamera, and they can block your face and change your voice. But ladies, this is nothing tobe ashamed of. The media of Oprah's calliber is very respected. You need not feel worriedthat your name or phone number or email address will be used without your persmission. Please email me if you have decided to send an email to Oprah, as well as if you wouldlike to help with the mail campaign to the NIH. Let them hear our voices!!!!!!!! Silent nomore! http://oprah.com/email/reach/email_reach_askstaff.html Lauren
CommentTo DK, It's a great letter. Send it as is. Don't take the "fuck you" out. Hemost likely won't read it, but it will make you feel better, it will make me feel better,and may make most of us feel better. I'm currently doing Dr. G's biofeedback. Had my first follow-up visit this week andfeel encouraged that I'm doing well with it. Don't know if it will work, though. Could sure use moral support with this horrible disorder. If there is anyone who livesor works in the NYC area and would like to meet for coffee, please e-mail me. You'd neverknow to look at me what I suffer from. I'm sure same is true for all of us. Who wouldguess??? So long for now, Love, Abbie
CommentHi All, I have left a message on this site before. I wanted to share with everyone again, a wayto be PAIN FREE!!!!!!!! OXYCONTIN. This pain reliever has been great. No severe sideeffects, No strings. It is a twice a day little pill to end all the horror you suffer. Ihave had this pain for two years. Since I take the Oxycontin life is great!!! My sex lifeis back, my freedom is here. I wear what I want, wash with what I want. No ointments, nodiets, nothing!!! I sleep great, wake up in the morning refreshed and excited about theday. I urge anyone out there living with Vulvodynia to try it. Try to remember what lifewas like before you got this horrorible affliction. I know again what life is like with NOPAIN!!!! It's wonderful. I feel like a woman again, started showing my husband how fun Ican be again. We shouldn't have to hurt all day and night.
CommentTo Elizabeth: I tried the ointment you are using and it relieved the burning for a fewdays and then I hurt more. The vulvar pain specialist I went to said that steriod creamTHINS the vulvar skin, but that Estrace cream thickens it. Ask the specialist aboutestrogen cream instead. It's done wonders for me. I hope you find some pain relief. Sue
CommentShannon, What is that product you're talking about and where do you get it? Is it overthe counter or by Rx? Thanks. Sue
CommentHi everybody: I received the Natl.V.Assoc newsletter yesterday and there is notice thatthere will be a special on CBS on Body Humas: love sex and the miracle of birth and of theshow segments features an NVA member who suffered from severe vulvar pain. I
CommentSorry, I got cut off. The CBS special will be broadast on Wed. April 7th at 10pm ET/PT.And I urge you all to contact Oprah Winfry. Hulda
CommentSorry, I got cut off.the CBS special will be broadcast on Wed. April 7th at 10 PMET/PT. And I urge you all to contact Oprah Winfry. Hulda
CommentSorry, I got cut off.the CBS special will be broadcast on Wed. April 7th at 10 PMET/PT. And I urge you all to contact Oprah Winfry. Hulda
CommentSorry, I got cut off. The CBS broadcast on VV will be shown on April 7th at 10 pmET/PT. Hulda
CommentHere is some information on Oxycontin Oxycontin is the controlled release form of oxycodone (Percocet). It is a painmedication approved for moderate to severe pain for patients who have to be on painmedication for more than a few days. This product is made by Pudrue Pharma L.P. ofConnecticut. For the right patient with pain it may make a significant difference in hisor her life and certainly takes some of the misery from pain out of their lives. Itreduces the ups and downs of having to take pain medication several times during the dayor night. Oxycontin has advantages over the other pain medications. These include: 1. Nosignificance drowsiness or drug effect in most patients 2. Generally well-tolerated Themain disadvantage of Oxycontin is its price and that in some patients it may loseeffectiveness over time. Using the right amount of Oxycontin, staying with dosingschedule, and selecting the right patient is very crucial as to avoid side-effects anddrug dependence. This is where the experience of doctor prescribing this medicationbecomes very important. Like all of the other narcotic pain medications Oxycontin has alist of side-effects and it may be habit forming and cause addiction. You can look at thelist of side effects by consulting Physician Desk Refrence or ask your pharmacist for aprint out. The side-effects can be avoided if the doctor selects the patient carefully,choose the proper dose of medication, and educate the patient about these medications, howto take them, and their side-effects. This drug should be prescribed only by doctors whotreat painful conditions on a regular basis and are familiar with the use of narcoticmedications.
CommentDK...I say send the letter to your Dr, but do what I did when I sent one to mine -I putpersonal/private on the envelope.He got it alright,cause he called me!Nipped that in thebud. My complaint wasn't about him-it was about one of his witchy receptionist.
CommentI have vulvar vestibulitis/ vulvodynia but I also have some other symptoms and I don'tknow if they are related or not. I know that some of you have mentioned this before - butI am just wondering if anyone else out there gets PERIODIC PAIN IN THE GROIN. Every oncein a while I get pain on the left side of my groin and I can't link it to anything inparticular - i.e. infections, etc. If anyone else has experienced this, can you let meknow. I also get occasional PAIN IN MY LEFT BUTTOCK. It feels like muscle pain because Ican stretch it out, but then it comes back. Has anyone else had something like this?
CommentA friend of mine suggested that we not only email Oprah's producers, but that we callHarpo Productions in Chicago and speak to a producer on the phone. Does anyone else wantto do this too? I wonder if they'll actually connect us to a producer though.
CommentChristie, Regarding your groin pain--I too get pain that travels down from the vulvararea into my thighs or buttocks. I was told that was due to a muscle spasm from the painor possible nerve damage. I'm not sure that is what you are experiencing but I hope ithelps you.
Commentchristie- not only do i get terrible pains in and around the vulva which are sometimestabbing pains and sometimes feel like a charlie horse, but for years now i get a charliehorse that is so strong that when i get them i am stuck in what ever position i am in whenthey hit. it usually runs from my right side right around the hip bone and it radiatesdown and across my entire my pubic bone and into my bladder area and sometimes even downthe inside of my thighs. i have had every type of test and seen every type of doctor andwent so fars as to have a hysterectomy trying to get rid of the pain. unfortunately itwasn't until after my hysterectomy that i found a vulva specialist who told me that thepain was also associated with the burning. my problem is definately due to two separatetail bone injuries and so is nerve damage. i am so thankful to talk to others with thisproblem but equally sorry that you are in this kind of pain. i pray for each and every oneof us. to DK- definately send the letter! it is for each one of us who have beenhumiliated, misdiagnosed, scared, made to feel like a freak, not to mention been called ahypocondriac. please post and let us know if you get a response.
CommentChristie and Diana, I get pain in the left groin area also and I determined that the only time that I getthis groin pain is when I have infections going on. I wish I knew what causes me to getthat pain only with infections and not at other times. I hope that this is of some help to you. Also feel free to drop me a line any time.
CommentMy first entry; but I have been following this site for a couple of years. I too am apatient of Dr. Richard Reid. He offered hope at the lowest point in my 16 year battle withthis horrible disease. He is no longer available for those of us in the US, having movedto another country after losing a lawsuit to Jeffrey Fieger. I continue to search for acure--not just treatments. Has anyone read the book by Dr. St Armand about Fibromyalgia?Although I am drastically better since treatments with Dr. Reid, the symptoms continue toreturn and haunt me psychologically and physically. Sex is still rare and frightening tocontemplate. I recently purchased Dr. St Armand's book and was impressed by his knowledgeof the integral diseases associated with Fibromyalgia. Although I had only just begun tosuspect I had Fibromyalgia in addition to Vulvadynia, his book led me to believe I havesuffered a variety of diseases--not just VV. After reading the book a few times over, Idecided to try his treatment. Unlike most of the other treatments I have tried over thepast 16 years, his seemed simple and without risk--so why not. I'm 40 days into it, andeverything has progressed exactly as was predicted in the book. Much of what he wrote hasvalidated my years of suffereing. My question to all is this, has anyone successfully usedthe guaifenesen treatment for FM or VV? I would encourage anyone to read his book andconsider what he says. He makes such good sense, and though it may not be a cure-all orfix for all of us, to me, it offers real promise to many of us who have little else totry. I will try to update this mail as I continue my treatment. I am about 45 days into itand I have committed myself six months before I throw in the towel. So far the FM symptomshave gotten so much worse, I now believe I have had it all along--but focused on the worstaspect of this disease--the VV. According tothe book, this escalation of symptoms is agood sign. The VV has gotten somewhat better at times, but since Dr. Reid, it has nevergotten as horrible as it was when I first saw him. Regards to all of you who like me aresearching for answers and solutions. Again, I highly recommend the book. More info isavailable on the VV web sites. L
CommentFor Regina C.- Often we have a chemical sensitivity to the base of medications. Somepeople have been successful with estradiol formulated in vitamin E oil. I have made muchrecovery with the guidance of the Vulvar Pain Foundation. I have been on the low oxalatediet for 5 years, timed calcium citrate for 4 1/2 years (thank you Dr. Solomons), N-AcetylGlucosamine 3 years (Solomons), tri-cyclic antidepressant, Zyrtec antihistamine, 1800 mgGuaifenesin(Dr. St. Amand), magnesium. Pain meds and muscle relaxants for fibromyalgiahave helped the VP too. With careful management- comfortable clothes, A&D ointment,drinking lots of water and following the low oxalate diet, I have become more and morehealthy. I am grateful that I never went the surgical route. So many women have told me that they are "never the same down there"following the surgery. So many of us have fibromyalgia symptoms- this is a complexmetabolic disorder for most of us. Surgery gives relief for a limited time. Then oxalicacid builds up in the remaining tissure and a person is worse off than when they started.
CommentIn response to MLD's entry on 1-12-00 about her vulvular vestibulitis: I was diagnosed3 years ago and had it a year prior to that. I ended up at the University of Iowa Women'svulvular and vaginal disorder clinic in Iowa City. I still have some pain almost everyday,but not as bad as in the begining. I was given a topical cream to use that was in a teststudy. I also ha the vest. ducts burnt shut. This helps some more than others. I use allwhite toilet paper w/ no chemicals/scents, baking soda soaks, Crisco liquid oil to protectthe inflamed skin, all white cotton underwear and All free & clear laundary soap-nofabric softner. It has been a hard road w/ dealig with this and there is nothing to makeit just go away. I am better off than many, however, the pain effects my life in so manyother ways. I know it's hard to do, but I find reducing stress also helps keeps flare-upsdown. Hope this helps!!
CommentI have had my vvs/vulvodynia successfully treated by a combination of surgery andphysical therapy. It was NOT laser surgery, which I hear should be avoided. I had sufferedfor about three years previously, since use of monistat for a yeast infection. The surgerycured the vvs painful points (with no scarring or anything at all) but not the burningvulvodynia-type symptoms. I live in the Boston area and would be happy to refer anyone toeither the doctor or the physical therapist (a physical therapist specializing in women'shealth issues who has treated lots of vulvodynia patients. Dr Glazer referred her to mewhen I emailed him - she is great). It is so wonderful to have experienced virtualcomplete relief of these problems which had bothered me substantially for many years. I amfully enjoying my marriage and am expecting my first baby. Please email if you're in theBoston area and would like more info. There is hope out there!
CommentI sent an email to OPRAH about 2-3 weeks ago and have heard nothing. Has anyone elsesent one? By the way, is this show on CBS on Wednesday OR April 7 at 10 pm? Anyone know? BecauseApril 7 is a Friday.
CommentI am happy to have read comments from others dealing with the same stuff/pain/crap Iam. I am undergoing INTERFERON injections currently into my vaginal wall to"treat" my Vulvadynia. My pain is between 2-5 o'clock inside my vagina. I havetremendous pain during intercouse (which no longer takes place) with tissue that feelslike is has tears. I was recently diagnosed with it after doing MY OWN research andeducating my doctor about it. I want to know if anyone has received this type oftreatment? Side effects? Did it work?? Any suggestions? I emailed OPRAH too!! Let's hope everyone tries to do their part to educated othersabout Vulvadynia. I look forward to chatting with you all! Lisa
CommentDoes anyone have Roseaca and/or scalp problems along with vestibulitus?
CommentVestibulitis
CommentI am back. Just wanted to let you all know that I just now emailed Oprah Winfrey. If Ihear anything, you ladies will be the first to know. I suggest that every one that readsthese postings send her an email. If we all do our part, we will be heard!!! I gave her abrief summary of what we vv sufferers have to endure!!! PLEASE, PLEASE DO THE SAME!!!Thanks......
CommentI've emailed Oprah twice and wonder if we'll ever hear back from anyone. Sue
CommentTo Lisa W: I went through interferon injections in 1998. I got the injections in the morning andfelt like I had the flu for a few hours in the afternoon. The injections themselvesweren't bad (I put ice on the area before the injection to numb it a little). Towards theend of the inections (#10 or so) I developed some small sores (which are common). Theywould sting when urinating, but cleared up after a week or so. Unfortunately, theinjections did not work for me. I'm crossing my fingers for you!
CommentAfter suffering from vulvodynia for 3 years, and seeing many Drs., having lasertherapy, biopsies, steroid creams and other medications, I was referred for acupuncture asmy latest Dr. said the pain seemed to be related to the nerve endings themselves, andacupuncture can help that type of pain. I have had acupuncture twice a week for 7 weeksnow, and the pain is almost all gone. It's wonderful to be able to exercise again, haveintercourse with my loving and supportive husband, and feel that my life is not beingtotally ruled 24 hours a day by my vulvar pain. Has anyone else had success withacupuncture?
CommentI was wondering about acupuncture, how do you find a reputable doctor? Anyone have anyideas?
CommentI started suffering with all the same syptoms as everyone lists after my first childwas born. It took me a year-and-a-half before a friend of a friend diagnosed me afterantibotics and yeast infection medicines never cured me. I started the low-oxalate dietwhich worked great for me. When I became pregnant with my second child I deviated from thediet and found that I had no more symptons. It was great eating all the chocolate Iwanted. After she was born I continued to nurse for one year and still had no symptons.The month I weaned her, the symptons reappeared. I am wondering if there is a hormonalcorrelation, and if so, what could I take to keep these horrible symptoms away?
CommentCatherine- Have you tried estrace cream applied topically to the area according to Dr.Wilhelms' protocal. The info. is at the Vulvar Pain Foundation website.
CommentCatherine, I also wonder if there is hormonal component to this disease. I use theCombipatch for hormone replacement. My doctor just happened to check my hormone levels anddiscovered that even though I showed no symptoms of menopause, my hormone levels were low.I have also started using Prelief. It is a supplement that can be purchased at most drugstores and grocery stores. Take two caplets before eating anything off the Low OxalateDiet and I have had good success. I actually feel better than I have in 3 years. My doctoralso prescribed Effexor XR 37.5 mgs twice daily. Recently, I began using Claritin forallergies and I notice that I am doing so much better. I'm not sure which of these medsmake the most difference, but all 3 seem to be an answer for me. Good Luck.
CommentThe CBS special on Wed. April 7th is at 10pm.Title is Body Human 2000;Also: I e-mailOprah Winry and got a confirmation within the hour. the e-mail adress that sent t heconfirmation was : topicalert@oprah.com Hope this helps.
CommentThis message is for Marilyn and everybody else that wants to watch the CBS specia.First of all, I got the info from the Natl. Vulvodnia Assn. newsletter and clearly saysWed. 7th. However, since the 7th is a Friday, something is wrong here. A phonecall to theAssn. is in order. But it could have also been in the year 1999? it is not clear from thenewsletter> I apolgize for the confusion. Hulda
CommentI really don't want to put my name on this. I feel like this is a personal struggle. Ihad vestibulitis for three years following a low dose prescription of tetracycline forwhat I was told may be the beginning of rosacea. After that, I thought I had a yeastinfection so I treated myself with an otc medication. It made the itching and pain worse,so I made my first of many trips to the doctor. I was given a stronger medication for ayeast infection. That didn't work. I tried a sulfa drug and was extremely allergic to it.All the while, the burning and itching and pain continued unabated. I switched doctors afew times, was given medication for vaginities, was referred to a psychologist, andfinally found a doctor who actually gave it a name. It wasn't until I stopped takinganything for it that it actually let up for a while. (not immediately) I recently used atopical antibiotic (on my face) and the symptoms of vestibulitis have returned. I reallyfeel that antibiotics (bad reactions to them) are one cause of this. I also feel that Ilearned from the last time NOT to go in for all the medications doctors like to prescribeuntil they get so frustrated with you that you feel as though they are angry with you fornot improving. I am going to try the B vitamin supplements, stay away from jeans etc. Ihave come to the conclusion that stress does play a role, the time in my cycle, and mostimportantly I will avoid antibiotics. Reading these messages makes me really sad.
CommentTo the lady who didn't put her name on the post prior to this one.... I totally agreewith you that antibiotics do stir up trouble in the vaginal area and one should take greatcaution about any medications BUT please be advised that Vitamin B and B Complex willcause the Vulvodynia to re-occur or become worse.Trust me.....I found out the hard way onthat. I've since told others who suffer about my experience with those vitamins and oncethey stopped taking them they became much better....as in less pain and inflammation. TheB vitamins are excreted through the urine and it will aggravate the condition.As far asnot waering jeans,etc. that is a good idea.I try to stay with loose fitting cottonpants-IF I wear pants at all.I mostly try to wear long dresses and skirts.Mainly I wantedto respond to the part about your taking the B vitamins. No need to go through what I andothers did if you can avoid it.Good luck!
Commentthe cbs human body special was broadcast last year. if you read the old guest booksyou'll see they discussed it last march.
CommentI take a B complex daily, and it doesn't affect me adversely at all. Not everyoneresponds to things the same way. But I also cannot take antibiotics with experiencingsevere burning and urinary symptoms. Sometimes sex causes pain and sometimes not. Everyonehas to find out for themselves what causes problems for them.
CommentRe: Sue......you know everytime I post something here-you have a derogatory comment tomake about it.Is it just ME you have a problem with? Just curious.I rarely post anythinghere anymore -mainly due to people such as yourself and most probably won't post hereagain.I've found another support group in which there are no problems with suchrudeness.Exactly how many woemn have you spoken to who use B complex vitamins anyway? I'vetalked to many and after they stopped using them-their symptoms abated dramatically.
Comment1st time site user. this is great! well, i have had vvs for about 2 - 2 1/2 yrs., age27 now, diagnosed very quickly b/c a friend told me about it & i asked. i have beenusing cortisone( my savior!) from the start & been on amytriptilene for about 7 monthsnow. it worked great. i was pain free for about 4-5 months. but recently i had a flare upagain. i was very discouraged. i think w/ me sress plays a role. my dr. told me it willcome & go in cycles. he also mentioned about the diet thing this time around.. cananyone please give me more information about this oxalate stuff?! what, why, and whatfoods? it wasn't until this flare up that i started doing more research. the clinic gaveme info about the nva newsletter, & here now i found this site. i too have a verysupportive partner, but i feel so guilty sometimes. i hated going from someone who wasvery active sexually to now only when i can handle it. i've tried using xylocaine forintercourse, it's great during, but when it starts wearing off- look out! should isubscribe to the newsletter? should i visit a support group? i guess i can check here moreregularly. please feel free to e-mail me. just put vvs in the subject so i don't think itsspam & delete it . p.s. do i have to give up chocolate?
CommentDr. Glazer, I've been going to GYN doctors for years explaining my symptoms and upuntil now, I was not believed. My husband wasn't too understanding either. My new GYNdoctor did all the routine tests to rule everything else out, also did biopsy. That wasmore than any GYN has done to help me. Everything came back fine with the exception ofinflamation on the biopsy. I was given Elocon to use for the inflamation. The pain isslightly less after using cream but I am weary being more aware of this part of my bodyevery second in my thoughts. I am tired of hurting. My doctor has talked to me, explainingabout Vulvodynia. I've never heard of this before and I am angry its happen to me. This isa womans worst nightmare! I want to help myself and others by volunteering forexperimental therapy / treatment. I know I must hurt pretty bad, there was no differencein my pain right after having a biopsy. My doctor told me I would feel sore after thebiopsy. I felt the same pain from my biopsy. I couldn't tell the difference in the pain.My doctor has talked to me about antidepressants. I am already on Prozac, have for years.The difference between Prozac and what my doctor wants me to take has been explained. Iwould like you to be more candid with me on all the different treatment methods. I readall that I could on this, with the latest from 1998. Has there been a breakthroughtreatment since 1998? My understanding is, as a last resort, removing that area completlywith surgery. What does that do to a woman's sex life? Is there any sensitivity sexuallyafter such an invassive surgery? Does this take away the pain and leave you with no sexdrive or orgasams? Sometimes I feel I'd rather do the invassive treatment of what needs tobe done and skip the long term of trying less invassive treatment if nothing new has beenfound in this research. I am in my sexual prime age, at least thats what I have alwaysheard. I know you get hundreds of letters everyday, I hope my letter, in some way, really doesreach you. My emotional feelings are wearing thin, I am so tired of hurting in my mostprivate, intimate part of my body. Please reply soon, I am depending on your support. T.C.
CommentGAYLE; WHAT THE HELL IS YOUR PROBLEM? I'M NOT CRITICIZING WHAT YOU SAID. I'M SAYINGTHAT B VITMAINS DON'T BOTHER ME. I'M NOT SAYING THAT THEY DON'T BOTHER OTHER WOMEN WITHVULVODYNIA. . Gayle: You obviously have a problem. I'm not saying that B vitamins may notbother other women; I'm saying that they DON'T bother ME!! GET A LIFE!!!!!!
CommentJulia, Lauren,Sue, Your stories touched me, When women are so overwhelmed with thispain, there are never enough words to express what we go thru. I WOULD in a heartbeat showmy face on Oprah, because I want the pain I feel associated with a name and face. I am notjust another satistic. I am a real person just like all of you. I am strong with myconvictions for what is right and fair. Tell me what I can do to help this group get thepublics attention. Oprah is a great start, she is compasionate and people watch her.Please include me in your support group, up until now, I was alone and did not know whatwas wrong with me. I really thought I was the only person going through this. This is sucha relief for me to know you all are at the touch of my computer. I read alot of yourletters and I wrote as much down as I could in regard to medications. I plan to ask my GYNabout all of this. Until there is a cure, I want to get some relief from pain, just tofeel close to normal again. Sex, the thought turns me off so much. My husband tries tounderstand, but when I was dignosed with this a few days ago, my heart sank because I wastold there is no cure. I want my life back, and going public is a long shot, I'm ready totalk to anyone who will listen. All of you ladies reading this, please write to me.Knowing that your here makes it a little easier trying to cope. Terry
CommentI have visited this site several times in the past two years as a way to remind myselfthat I am not alone. Thanks.... I am a 22-year old college student who has been dealingwith this problem for approx. two years. The symtoms have evolved like this: Four monthsafter my first sexual intercourse experience, I started off getting yeast infections alongwith UTIs, then I started having pain upon primary penetration of sexual intercourse,(This made me think that my partner was too large and my skin was not elastic enough), Ihad the little cuts that made using the restroom something that I dreaded because it wouldburn so badly that tears would come to my eyes. It ruined my relationship because I was paranoid about my partner's fidelity, too latefinding out that it was not him at all. I was tested for diseases over and over... Guesswhat?...disease free! There are many times when I wish that I had had one of the STDs thatthere was a quick cure for because then I would not still be dealing with this. I havesince had a second intimate relationship. At this point, the problem would exist duringintercourse too but was more internal. It was as if the friction would make the wallsinside of my vagina extremely hot like an oven. The burning during urination was stillthere, too. My main problem with this besides the physical pain is the mind/bodyconnection. I feel like whether I want to or not, I resent the person who"seems" to be causing this pain. I can have sex sometimes but after a while itbecomes more difficult and duration is a problem. When I am having a bad day with it, Iwish that my partner could read my mind and not bring sex up so that I don't feel soguilty, but this is an unrealistic expectation. Since I don't feel that this is fair to meor my partner, I have decided to focus on other things in my life like my career andschool and put intimate relationships on the backburner. I have tried almost all of thethings suggested to help this problem. I recently met with a doctor in Jacksonville, FLwho Dr. Glazer referred me to. His name is Guy Benrubi M.D. He assessed the problem and acure that he says has an 80% success rate being that I am considered to have secondaryvestibulitus, since there was a time that I could enjoy sex 100% pain-free. He suggestedremoving some tissue (I wish I knew what exactly he was speaking of) because I supposivelyhave some overactive-vestibules that are attacking an unexisting problem in the painfularea. he also said that my hymen is still intact. I am wondering if: -you has been treatedby him and your experience. -if anyone else has heard of primary and secondary cases. -ifsurgery is a good option. -if this assessment was too quick. -if you have had the sametype of pain evolution. Lastly, a little encouragement. There is definitely a sense of pride in knowing thateven though you have a great disadvantage that many others do not understand or even knowabout; you can get through it. Pain is weakness leaving the body. When you do finally getthrough this like we all will, you will have a better understanding for others in general.There are people around us everyday who look happy on the outside, but have problems thataffect their everyday lives that you couldn't possibly fathom. I know because I am in asimilar situation to all of you submitting your experiences. I hope and pray that somemedical advances will be made soon to help us all! The more understanding you are toothers; the more understanding they will be of you.
CommentI must agree that people making remarks to others posts are not necessary,especiallywhen the person was trying to be helpful.It's not just always better to let others sufferFirst when someone else who has been through the trial & error of things can let themknow what seemed to cause them problems. I always appreciate the advice of others who havealready found the cause of their discomfort.So for someone to say-let them find out ontheir own if certain things bother them-well that is just wrong.Arguing and bickering andcursing at others will NOT help anyone.I propose that if someone here doesn't like whatanother has posted....rather than comment against what That person has said.....simplyignore the post or post a comment without being rude to anothers opinion.I read the postsI'm referring to and I think the person who posted first was trying to be helpful...atleast it seemed that way to me.I was in fact taking B vitamins too and having terribleburning and am now going to stop taking them and see if I get better. I researched on thenet and did indeed find that the excess B vitamins are excreted through the urine,as theperson indicated,so it makes sense that it could cause problems.Anyway....I had notvisited this site in a while and if this is the type of support women get here-cursing atothers and such,well I won't be back and will tell the ladies I recommended this siteto,not to bother either.It seems that this chronic pain is getting to some of us-and someshould try to control their tempers and not be telling women in pain to get a life! Imean.......really....
CommentI have had vulvodynia for 11 years. I really believe that it is tied to hormones andhave said that to my doctors. The doctors say that not all women have the pain cyclically.Well, now that I am 41, I have the pain all the time and I still think it is due todeclines in estrogen. When I was pregnant, 5 years ago my symptoms disappeared. The doctors put me on a low dose birth control pill to try to regulate my hormones. Itdoesn't seem to be working and I have noticed that some women say that birth control pillsmake them worse. I swear if it weren't for my daughter, I would really think about ending my misery. Iam already on an antidepressant and I don't know what to do now. I am being treated at U of M hospital, but it is all trial and error and I am sick todeath of trying things that don't work. I am thinking of asking just for some painmedication to try to cope better as long as it doesn't turn me into a zombie. Also has anyone heard of GHR 15, it is a human growth hormone releaser and supposed totake your body back up to 20 years. Check out the web site GHR.COM. I will let you know ifI decide to try it and if it works. Thanks for listening.
CommentHi, I'm a little afrais to give my e-mail address at this time. I've been sufferingwith this problem for 4 years. I am 42 years old. I have always been a little sensitive,not just physically, but emotionally. As I near menopause, my naturopathic doctor told methat it often gets worse (I suffer from anxiety). Geting back to vulvar pain, though,initially mine was very painful, I saw Dr.Benson Horowitz in ' 96 and he diagnosed me. Iwas on Nystatin for awhile, found to have yeast all over my body (though, not any vaginaldischarge, oddly), and gradually I felt some relief. I've used Estrace cream, but havegone from using it twice a day to maybe once or twice a month. Something I recently tried,without even thinking it would help the vulvar pain, was the Atkins diet. I was on it forabout a week, but during that time, although I felt a little Blah in my stomach (I'veheard that that passes) I had total relief from the vulvar pain, as well as little aches,pains, and discomforts I never gave my heed to! With a large family to feed, it's hard toresist sugar and starches, but I am going to try to go back on the diet. I had so muchebergy, too, and lost weight! Just wanted to know if anyone else has tried the Atkinsdiet. Thanks
CommentHi! I have GREAT news! There really is hope for women suffering from chronic vulvarpain! i had constant burning and itching for months last year at this time, and wasmisdiagnosed several times that it was a yeast infection. i ended up making what startedinitially as irritation a million times worse by actually burning my skin withantifungals. anyway, it is a year later and i am totally cured. i used estrace creamnightly for six months, and realized that most of this was completely stress related. iwas at a transitional time in life (college to the real world, with other roadblocks) andbetween burning my skin, worrying that it was a recurring yeast infection and stressingout that it may be something serious, i ended up almost doing it all to myself by being sooverwhelmed when the drs. kept telling me there was nothing wrong, but the burning anddiscomfort persisted. the day i was officially diagnosed with vular pain, my paindecreased nearly 80%! just the fact that my fears were at ease. WHATEVER YOU DO, do NOTtake Elavil, it totally changed my personality! and it was the lowest dose possible.anyway, i know i am rambling, but there is hope, you just have to find out what is causingyour pain, and just keep praying, there is hope for all of you too! best of luck, liz
CommentI need advice from women who have had vv before or during their pregnancy. I amcurrently 2 months pregnant, and have had vv for about 6 months. I need to know howvaginal deliveries have affected anyone - if it has made the problem worse, or possiblyeven better? Feel free to write to me at the e-mail address I've listed. Thank you somuch, and good luck to everyone!
CommentHi all- After being diagnosed last month. I was put on amitriptlyne. I was on it for 5days. I noticed a difference in my emotions and I was noticing the pain more. On March 5,I began taking Sam-e It is a natural medcine that is used to promote emotional well beingand to help for joints. I took one pill (200mg) for a week and a half. Then I startedtaking 2 pills (400mg) one in the moring and one around 8:30 pm. I am taking this for thepain. I feel relief. I notice if I do not take the med. I have burning. Has anyone elsetired this? I purchased this at wal-mart. It is Nature Made brand. It is a $1.00 a pill. Ithink it is worth a try for anyone out there.. Also, to all the women with pain in there buttocks and thighs-- Is this a sharp pain,muscle ache, etc? Please let me know. Thank you. Unfortunatley, I belive I am experencingthat now. Keep your spirits up..
CommentExcuse me, but if someone like Sue can't say anything without you guys accusing her ofcursing (and if you guys think "what the hell" is cursing you need to get outmore) then there is a real problem. Wouldn't any of you react the same way if some weirdoaccused you of attacking her personally because you made a comment about B vitamins?
CommentThank you Ally. I couldn't believe I was attacked either for having an opinion otherthan Gayle's!!
CommentShannon, Regarding thigh and buttock pain For me it can differ. Sometimes it feels likemuscle pain, sometimes like a burning and other times prickly. Sometimes it feels like thenerves are exposed and any contact just makes it worse. I know that doesn't help much butI can't explain it either. Diana
CommentDr. Glazer,I think the very uncalled for remarks made by Ally and Sue(who I believe areactually the SAME person) should be removed from this site.Cursing at someone AND callingthem a weirdo is THE most immature thing to date that I have seen on this site.And thoughI don't post often,I have thus far enjoyed the infor. I've gained from your site.But thosepost need to be removed.Obviously every woman reading this site is in emtional andphysical pain and to be called names and ridiculed is a line that this person just steppedover.
CommentI was wondering if there was anyone in Australia who has this problem and if they knowof any doctors willing to treat it. My pain isn't as bad as the other women on this boardso I am reluctant to seek medical advice as I've heard that misdiagnosis can worsen it.And I doubt many doctors here know about it. Does anyone have pain in cycles. So far it seems that with me it starts some daysbefore my period is due and continues through it and for some days after and then stops. Idon't think oxalates have anything to do with it as I have eaten high-oxalate foods attimes when I don't have pain and nothing happens until maybe a week or two later when Iwas expecting the pain anyway. Does that make sense? Or does oxalate sensitivity take thatlong to show up?
CommentTrace, I agree with you about it being hormonal. I used to have symptoms similar toyou. About a week before my cycle, I would have a couple of bad days. Then once I startedit was pain during that week. Then about a week after my start date, I would have a coupleof bad days. The other reason that makes me think it is hormone related is that my symptomsdisappeared totally when I was pregnant. They reappeared once I had the baby and myhormone levels went back to normal. Also, since I turned 40 (I am 41 now), it has been sooooo much worse. I can't describehow much pain I am in daily. I went on Birth control pill to try to regulate my hormones,but it has not helped and I am having a heck of a time with breakthrough bleeding. I havean appointment next week and I am hoping they will come up with something new and excitingfor me to try. I sent you a personal email about a great doctor I know in Australia. Good luck to you.
CommentI forgot to mention this when I posted last time, but for you women that have mentionedthe muscle pain, like buttocks etc., have you looked into fibromalgia? I have heard ofwoment that have had both fibromalgia and vulvodynia, I don't know if there is a linkmedically or not. Also, I am not totally familiar with the symptoms of fibromalgia. It is just a thought. Hope that helps some of you.
CommentThis is for Liz - Congrats, so glad to hear you are pain free - can you clarify for me,did the Estrace contribute to you being pain free? Thanks.
CommentTO GAYLE AND SUE. Listen, we blow up. I do. I've been at this for 12 years. We'rebasically all in the same boat. Some things work for some and not for others, but we'rereally are trying to help one another. We're disgusted, frustrated, and it's all we thinkabout. REMEMBER, WE NEED EACH OTHER. WHO ELSE IS GOING TO LISTEN!!! Now. Make up.
CommentHi Dr. Glazer, You may remember me, I'm not sure...I was a patient of yours inCambridge, MA at The Marino Center from 1996 -1997 where we practiced biofeedback. At thattime I was referred to you by Dr. Michlewitz. Once you no longer practiced at The MarinoCenter I continued to see Dr. Michlewitz on a regular basis with unsuccessful treatment ofmy Vulvodynia/Vestibulitis symptoms. At the end of 1998, being at my absolute wits endwith my burning and painful symptoms, my OB/GYN referred me to Dr. Elizabeth Stewart in W.Roxbury, MA. It was there where some light was FINALLY shed on this life alteringcondition of mine (and so many other women). After (another) extensive physical andemotional exam, during discussion I was reminded of an injury I had had to my hip justabout 5 months before I began having vulvar pain. At that time, I saw a physical therapistwho then confirmed that I had rotated my hip (that I was 'malaligned')...The 'problem' wassupposedly treated and cured with therapy and exercises...Little did I know that 5 monthslater when I began having vulvar pain was probably a direct result from that very injury.I literally was walking around for 5 years with my lower back/pelvis out of line (orrotated);thus causing a referred pain to the ever so close nerves of vaginal area! I wasimmediately referred to Physical Therapist Holly Herman in Cambridge, MA who confirmed ourtheory...I am suffering vaginally from a 'hip rotation' and have been undergoing weeklymassage and physical therapy to 'keep me in line' and lessen my vaginal pain. I have beenwith Holly now for over a year and have seen signficant results. I am also taking Elavilat the same time. 'Significant results meaning, longer periods of feeling pain free....ButI do suffer from time to time with extreme pain and feel instantly as though I'm again atmy wits end all to quick. 6 years into suffering from vulvodynia or vestibulitis, and Ihave little confidence that I will ever feel 'normal' again forever. This 'disease' hasnot only affected me and my lifestyle negatively, but my marriage as well. I have beenfortunate enough to have 2 healthy children through it all and they and my supportivehusband are honestly what gives me the drive to keep on fighting this. Anyways, that's myupdate... Please feel free to e-mail me at TMDMcPhee@AOL.Com anytime with any updates andor information regarding all of the above.
CommentI'm back AGAIN. Went to see a "specialist" I was really excited about this.Gave me some cream for the inflammation and Lidocaine. Cream is helping. He took a culturebecause my chronic infections of 12 years may be mimicking something else. P.S. culturecame back--no mimicks--just the regular bacterial infection. DO YOU FIND YOURSELF NOT ONLYEMBARRASED TO BE GOING TO THE DOCTOR AGAIN, BUT TO THE SAME DRUGSTORE. I guess I'm justdepressed right now. Was kind of hoping that this "culture" was going to be apromising lead. Thanks for listening.
CommentHi Lois: I'm sorry you had a disappointing Dr. visit and I understand your depressionabout it!! I hope you get relief from the cream and lidocaine. Sue
CommentMy name is Cindy and I have had vulvar vestibulitis for 10 years. When this firststarted in 1990 no one knew what this awful condition was. It took about 2 years tofinally get the right diagnosis. I have had many bouts with yeast infections, bacterialinfections, irritation and excruciating pain. Treatments that I have tried includesurgery, low oxalate diet, anti depressants, creams, antibiotics and Inferon injections.Of all the treatments I have received in the past, the only one that has given me somerelief are the Interferon injections. In fact I am starting them again in about a week. Iam also very lucky that I have a very wonderful husband who I have been married to for 16years. Our sex life is basically non existent. I am also lucky to have a 15 year olddaughter who is very understanding . I am in pain almost all the time. I am glad I foundthis sight and hope and pray that a cure is found for all of us that are suffering on adaily basis.
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CommentWow, so many things to respond to... Looks like I've had Vulvodynia since about 1998. More on that later, though. I'mcurrently living in New York City where I've been misdiagnosed a couple of times alreadythis year. I haven't been able to find any doctors at all who would take me seriously, oreven schedule an appointment less than two months in advice. I can be just as pushy asassertive as the next New Yorker, and I work in a hospital, so you would think I wouldhave networked with a decent physician by now. Does anyone know of an M.D. anywhere inManhattan or NJ who specializes or is even well-versed in vulvodynia? I am desperate for arecommendation but keep reaching belligerent secretaries, harried doctors, and beauracrticHMO's. Suggestions anyone? Stacy, your story sounds very VERY similar to mine. I know where you're coming from. VVstarted up for me at the beginning of my junior year. I graduated with an English major asintended, but I've since begun pre-med work because of my experiences with misdiagnosis.It seems like medical knowledge is too important not to acquire first hand. I am no longertrusting jaded doctors to give me the "facts." Trace, there are several reproductive health clinics in Sydney that can be quite goodfor recurrent problems. They never managed to diagnose my VV, but they paid a lot ofattention and tried thinking outside the box. They were the only doctors I everencountered that were willing to concede that diagnosing it as a contagious STD was not aproductive way to handle the mystery problem.
CommentFYI. A while ago someone mentioned that the NIH had refused money to researchVulvodynia. I went to their web site and found some contacts and asked the question ifthey had discontinued research because they only wanted to research fatal illnesses. Hereis the resulting response from NIH: Dear Ms. Schmidt: This is in response to your e-mail regarding vulvodynia research. The NICHD has astrong commitment to women's health research and we are very interested in vulvodyniaresearch. Last year we invited researchers to submit grant applications for vulvodyniaresearch. While not all the grants were funded, one was particularly promising and theresearchers are working closely with NICHD staff to clarify the research objectives. Earlier this year, we again asked researchers to submit grant applications that willlead to better understanding and better treatments of this condition. These applicationswill be received shortly. They will be reviewed through the normal NIH review process andwe anticipate the grant applications will result in a robust investigation into the causesand treatments for vulvodynia. You might want to look at these web sites for additional resources, if you have notalready: . http://www.tldp.com/isue/166/166vulvo.htm I hope this information will prove useful and informative. Carol Florance Public Affairs Specialist National Institute of Child Health and HumanDevelopment .
CommentHi, my name is Tammy. Yesterday I posted here for the very first time. As you probablyread from my first post, I have been suffering from this awful 'thing' for just about 6years now. I have never wanted to talk about it with ANYONE in my life, never mind overthe internet! But after reading all these posts for the very first time, my heart reallygoes out to all of you (and me too!) This really sucks and it is so not fair. I'm sureeveryone knows 'it could be worse', but this is BAD. I plan on continuing to read theseposts and keep on posting myself as long as I'm welcome. Thanks for listening.
CommentMarylin, In regards to your post today I must tell you that this is simply not the case. Sinceyou chose not to leave your email address, I am forced to say this publicallly. You havebeen lied to by the NIH and you bought their line of crap, hook line and sinker. I havebeen contacted by a WebMD reporter who has been working on an article for a long time. Herresearch, will will be out in about 2 weeks more, will show that while the NIH has aposting on their site claiming to be giving money for Vulvodynia research, they have yetto give one damn dime out. There always seems to be some reason why they turn down aproposal. Perhaps you should ask Dr. Ledger of Cornell University in NYC, the BOBYN-InChief why they felt he was not qualified to run a study and conduct research with theirmoney. You can easily find his phone number on Cornell's website. Any women who want hisinformation so you can learn more about Dr. Ledgers findings-please feel free to email meat vulvodyniapain@aol.com. I smell a rat. And I am not buying the company line! Lauren
CommentMaybe I should have said earlier where in Australia I am. I'm in Perth, WesternAustralia. It seems like most of the clinics where doctors would know about it would be inSydney or Melbourne. My pain seems to be unrelated to oxalates or nerve damage (as I've never had any spinalinjuries). It seems to be hormonal, flaring up just before I get my period and lasting afew days after I finish. I know if I went to the doctors they'd probably want to put me onthe Pill and I know from reading other people's posts that it can make the problem worse.And if creams can make it worse and anti-depressants cause weight gain what other optionsare there? That's why I'm reluctant to see a doctor about it - in case treatments make itworse. I can't believe that there is no cure for vulvodynia. If Viagra can be invented why nota cure for this???
CommentHello friends, Its been awhile since I visited here. I have pick up some guestbookemail friends and enjoy communicating through our direct email address. It is more privateand a personal bonding grows from this. Wouldn't give that up for anything. These friendsthat have wrote to me on their own accord, after my first visit on this site ended upbeing my closest confidats. Thanks, you know who you are! Now, as for me passing downwhats happen since being diagnosed last week. I can say with confidence ( its been oneweek I was diagnosed correctly). This was a milestone for me. But a tease of cruelty also.To be told that there is no cure, and researchers are more cluless than imagined onfinding the culprit . I am ready to fight for my rights and make reasearchers do the jobthey were hired to do! Fight anyway you can people! Use those fingers and put our womenpower to work. I am starting some pain medication called Toradol, my doc said no when Iasked for Oxycontin. She wasn't comfortable giving me narcotics due to the risk ofbecoming dependent with increase of dosage to keep me out of pain. She did howeverprescribed me some form of pain medication and that is a start. I asked her to put me onEstratest, after reading in here that many were having improvments from this. I am keepingmy fingers crossed that I this does take the edge off my pain. I am so angry that womenwere left to stay ignorant to this disease and most doctors never heard of this. Howunfair when it comes to women medical issues, its never as important as medical issueswith men,why? We are taken forgranted in every way in society. I think everyone shouldwrite their own govenor and push the vulvodymia issue as close to home as you can. Thereare others like us being misdignosed every day and some ashamed to confront a doctor atall. I am a strong person to commitment in what I believe in and is fair. I hope everyonebomboards doctors into getting educated more on this disease for all women sake. I can goon forever,and yet never say enough. I have so much anger inside me because of treatmentoptions, there isn't a real one and we are grasping thin air for releif of pain. THE CUREIS THE ONLY WAY TO GET OUR LIFES BACK. Terry
CommentRe: Oxycontin, beware of any postings on health related sites that claim anything is acure-all with no side effects. I've heard some pharmaceutical companies often post falseaccounts on health-related bulletin boards with fake aol or hotmail return addresses. Yourdoctor is right to be concerned if the product is potentially addictive. 2. Sue and I arenot the same person so please put that one to rest.
CommentLauren, Is that Dr. William Ledger? Gee, if it is, I saw him about 10 years ago.
CommentHello! My name is Marie. I am 24 years old and live in Sweden. I have been sufferingfrom vestibulitis for 4 years. I can not use trouses, sit on a chair or walk longerdistances without very much pain or even bleeding wounds. I want to have contact withother women in the same situation. Please mail to runa@gotland.mail.telia.com Goodbye!
CommentLong time reader (and contributor) of this site. Just wanted to give you an update ofwhat I've been trying. After reading the story about Lupron, and after much discussionwith the insurance people, my doctor and I talked them into 3 injections (one a month).They decreased the pain approximately 85%, but 2 weeks after I stopped the injections thepain returned. My doctor then tried birth control pills. After 6 weeks I stopped that --the pain was not any better. Then I read about the Estratest, so now I'm going to start onit the 1st of April. April Fools day -- hope this treatment doesn't end up being a joke.I'm don't much feel like laughing. Still taking 40 mg Prozac every day just to keep fromcrying all the time. The fibromyalgia flares and goes away. Taking Vioxx and Soma forthat. Seems to working better than any other combination we've tried. Still have the mostpatient husband in the world! Thank goodness we've been together 13 years. Can't imaginehaving this in a new relationship. Sent off my e-mail to Oprah last week. Let's keep ourfingers crossed that all of us reading this website do the same. Just wanted to send mylove to all and let you know that many, many prayers are being offered up for this illnes.There's a reason for this -- just haven't figured out what that reason is yet. Take care.P.S. I've been seeing the Chief of Staff at Baylor Family Medicine here in Houston for thepast year. He is not a gyn "specialist". I stopped seeing them a long time ago.They all had the same answers and were not willing to try other alternatives. Just asuggestion, find yourself a good family practioner that's truly interested in getting youwell. I'm much happier than I've been in years. Also for all the women with the muscleaches/pains/tingling, go and see a good rheumatologist. That's who can diagnose thefibromyalgia. Mine says most of his patients with fibro also have vulvodynia and/orinterstitial cystitis.
Commentwell, it has been far too long since I have checked the guestbook. I see there has beensome less than polite interchanges and at least one request for me to remove theseinteractions. Let me make a suggestion. For direct communication you are much better offusing the broadcast email list vulvodynia@onelist.com than the guestbook. Secondly I thinkwe do need to be respectful to one another. However, I feel in the real world thatdisagreements do occur and they are often expressed disrespectfully. While I dont condonethis type of interchange it is part of real life and I think it is best left to stand onthe guestbook as is rather than having me act as in the capacity of a censor to remove it.Continued thanks and best wishes to all those who support the vulvodynia.com website andits guestbooks. Howard I. Glazer Ph.D. vulvodynia.com website owner
CommentLadies, please advice! My doctor tells me I have bacteria... that might very well be true, but now of coursehe wants to put me on antibiotics, wich I'm not sure I want to go trough with. As Iconsider you people being the experts on this subject, what should I do? Wait for it to goaway by itself - if that does happen, maybe that's not possible. Demand further testing?Or do you have any tip on how to get rid of the bacteria without taking antibiotics? I'vethought about maybe doing some douching with grapeseed oil or tea-tree oil and water. I'veonly had this problem for a couple of months, so far no pain or anything like that, justitching and irritation and swollen glands (the swelling is gone now after two months, I'mhappy to say...)... so my problems aren't really that severe but reading your stories hasmade me scared of possibly making it worse. By the way, judging by my symptoms, could it be herpes? I haven't tested for that yet.So many questions, I hope someone has an answer for me, please post here or to my adressif you have any insight.
CommentI have a single, recurrent blood blister at the 5 o'clock position. The blister itselfisn't painful, but I have extreme tenderness and slight swelling at the same site beforethe blister appears. Drs. think it's herpes, but cultures are negative. Has anyone hadsimilar symptoms?
CommentGreetings. AFTER SUFFERING FROM VV FOR 1 1/2 YEARS I HAVE BEEN PAIN FREE FOR 5 MONTHS -THIS TREATMENT MAY HELP YOU TOO. It is called Active Release Technique (ACT for short) andis practised by specialized chiropractors. What's on your list?: high acid diets (ourcaffeine culture), antibiotics, childbirth, tailbone/back injury, the pill, yeast, toxicsoaps & detergents, tampons, lack of excersize, stress, stress and more stress - andmany women carry stress in the pelvic area....SO, the muscles in the pelvic area cancontract so tightly that they pinch all the nerves feeding into the bladder, uterus,vulva. A.C.T. is a deep massage-like procedure that loosens the muscles to unpinch thenerves. AFTER SIX 10 MINUTE SESSIONS MY PAIN WAS SIGNIFICANTLY REDUCED. AFTER 2 MONTHS OFBI-WEEKLY SESSIONS I WAS PAIN FREE. I continue to be treated once per week for"maintenance". My Chiropractor has also treated 2 women I know with the samesuccess. There is a Centre in Colorado Springs which will refer you to qualified A.C.T.Chiropractors or Phsyiotherapists in your area. (They MUST by credentialized in spinalwork.) The number of the Centre is (719) 473-7000. Hope this information helps. Mary. Note to Melissa: yes, I too suffered from Roseaca and scalp problems which are alsoside effects of high stress. Since starting ACT treatment my scalp is now back to normaland the Roseaca has slowed considerably.
CommentFor more information on the Active Release Technique, you can check out this website:
CommentHi all, Its been awhile on this site. I see that Glazer appeared breifly since I waslast here. The one thing I can agree on is the ONElist.com. I joined last night and Its awonderful site. There is alot of information not yet explored on this site, yet, by nofault of anyone, but onelist is by far the most informative site to enhance your treatmentoptions and information. I think the reason for them being so informative is that a largersupport group exsists there. I now have more than twice the information to learn from.Actually, more than three times the information rate to learn from! I know I can use allthe information and support I can find and get. I want you all here to have it too. I needpain relief while waiting for a cure and I know that is what you all are striving foralso. The other attractive plus is the use of passwords so only we who are in the pain arethe only ones having access. We are somewhat exploited in a sense, if any man on the netcan read our most painful, intimate, personal and most private female disorders we arefacing. I hope to see each of you there, best, best regards to all of my friends here. iwill still be here too! Terry
CommentI am posting this for my wife Jan. At some point, when she is better, I'm sure she willwant to follow up on her own. This site is a Godsend and we have read many of themessages. But doing so has been a bittersweet experience. It helps with the "I'm notalone" part, but there is so much pain, frustration, and suffering. We feel verysorry for all those who are going through these problems. Jan has fibromyalgia, CFIDS, and likely MS (though the latter may well be dormant atpresent). Last fall, after some dental problems (antibiotics) and what appeared to theflu, she started to have some mild vaginal discomfort. She called her ObGyn (who she hadbeen seeing for 31 years) only to learn that he had passed away a month before. He was agood man and a caring doctor who saw her through many female difficulties. In remorse Janwent to a referral Gyn – a completely disastrous visit which seemed to set us off ona long and frustrating medical odyssey. What followed was an endless round of doctors andemergency room visits, complete with non- diagnoses, mis-diagnoses and lost time andeffort. No one seemed to know what was going on and either blamed Jan for the problem orreferred her on to someone else. All the while Jan was getting worse. She had pain in thevagina, vulva, urethra, bladder, and other parts of her abdomen. Her pain was gaining inintensity and over one month period I don't think she got a total of 5 hours sleep. Shespent most of her time pacing thru the house. Medications prescribed along the wayincluded diflucan, prednisone, and various antihistamines, analgesics, creams andointments. These were either ineffective, made matters worse, or had horrible sideeffects. Eventually a female dermatologist said Jan had vulvodynia and referred her to a vulvarspecialist. Unfortunately, he could not see her immediately. In the mean time, on a chancevisit to a urologist the urethra pain was getting bad), we encountered aNurse/Practitioner who specializes in IC and vulvodynia. She diagnosed Jan withvulvodynia, candidiasis, and problems with the muscles in the abdomen and vaginal floor.She has been treating Jan now for some two months. The results have been mixed. Theintense pain is gone, due (we think) to a combination of Doxepin (a tricyclic) andTylenol. But, since Jan had all the symptoms of a systemic yeast infection, she alsoagreed to take Nystatin. This was done with reluctance, since Jan's past experience withanother antifungal (diflucan) she credits with putting her in the emergency room. Bothdiflucan, nystatin, and most recently nysoral seem to be ineffective. And, all of themhave resulted in SEVERE INFLAMMATION AND SWELLING in the vulvar, vaginal and rectal area.This swelling is not only very uncomfortable (Jan cannot sit, stand, or walk), but hasprevented her from going up to dose levels that are therapeutic (at least by the standardsof the Nurse/Practitioner). In the midst of all this, a B-strep infection was discoveredand antibiotics prescribed. As expected, the antibiotics have made everything worse. What would be helpful at this point is for anyone out there who has had SEVERE SWELLINGassociated with this disorder to post a response and relate your experiences. We don't seemany postings which mention it, or if they do it seems to be a minor problem in theoverall picture. Jan's concern is that there is another problem going on that has not beendiscovered. If SEVERE SWELLING is, or can be, a side effect or reaction to anti-fungals,it would be nice to know it. The N/P first said that swelling is not uncommon with thesedrugs, but it would go away with time. Jan's swelling didn't go away, it persisted and, infact, increased every time the N/P increased the dose level of the anti-fungal. Our lifeis a mess at this point. All Jan wants to do is feel normal again.
CommentHi Jan and hubby, You are such a supportive husband and I admire that. I can not sayfor certain, but I truely believe that it is the medication. I am also prown tointolorence with this medication. My main problem was I could not function on a dailybasis. I stayed in a dreamlike state. I DO know that I suffered a lot of swelling therealso in general. I can relate to how she is feeling and nothing can be worse than to beswollen along with the pain. If she is swollen I am sure she is irritated and red also.The only thing that helped a little with the stinging and swelling was to soak in a fulltub of water along with 2 cups of applecider vinager. Sounds like this would hurt, but itdoes soothe. I also litterlly put ice in a cloth and layed in bed with that on too, I'drather feel numb from the ice than feel the pain. That helped with the swelling. Most ofall, I would recondider taking this medication. Everyone is affected differently by any ofthe suggested treatments and advice, no matter what kind. I'm not sure if she should eventry my advice in fear of worse results. I would be in the hospital if this was happeningto me for this long. The swelling is not a good sign, its an allergic reaction. PH's arein the dark just like us, we would have a cure if they weren't. But they are doing thebest they can with very little known right now. Any treatment is a gamble withmedications, creams and ointments. Remember that we women are in great pain and this isall we have for hope right now, I feel desparation every second of the day. I am reachingalso to doctors for at least some immediate pain relief while I gamble through themedications for a long term end to this pain. I do hope that she gets relief soon, thisbreaks my heart to hear how you two are fighting so hard. Your support is the best thingyou can do, Please keep me informed on how she is doing. My warmest thoughts are with youtonight. Terry
CommentI just wanted to share a site on About.com: 1.-Its easier to just do a search with thewords( Vulvodynia Bibliography. ) 2.-click on Vulvodynia Information Web Portal 3.-fromthe web portal, click on Vulvodynia Bibliography Everyone reading right now! Take a look. This is so far, the most extensive up to dateinformation from authors and researchers I have found and is very informative. You shouldlook this up. Happy looking! Terry
CommentHello everyone. I know I have said it before but it never hurts to say it again. I feelfor all of you suffering with this horrible condition. I myself have been living withVestibulitus for about 2years now. I know how depressing it can be and how sometimes youfeel that you can't live like this anymore. Just know that there are many of us out herewho know what it is like and that you are not alone. To the husbad who wrote a few daysback, I applaud you for the support that you are giving your wife. It is wonderful to seethat you are taking such an interest in getting her better. I have a very understandingfiance who supports me throughout it all and I know that without him, this would be MUCHmore difficult to deal with. Now to my question. I have currently gone to see a specialistworking out of a Detroit Vaginitis Clinic. His name is Dr. Sobel. I am just wondering ifanyone has ever heard of him or has gone to him before. I have only been there for onevisit and he took me off all medication except the anti depressants. For a six week periodI cannot do anything to irritate my vaginal area. This includes sex, excercise, tightclothing, etc. He also has me putting Vegetable Oil on the area twice a day. Since I havestopped all of the ointments and creams etc. I have felt much better but the pain is stillthere. When I go back to see him after this six month period, if I am still in pain wewill try something else. I am losing hope in ever finding a cure for this. I have alsosent a email to Oprah but have heard nothing. I surely hope that we will eventually beheard. To all of you out there battling this condition, I commend you. You may not feelstrong now but just the fact that you have this and go through each day, you are VERYstrong. We will get through this. If anyone would like to email me for support, pleasefeel free. If it takes awhile for me to respond don't think I'm ignoring you...I just haveproblems getting connected through my account sometimes. Take care of yourselves.
CommentI promised Dr. Glazer that I would leave a note in the guestbook so here I am. Isuffered with vulvar pain, itching, and irritation for over 6 years, ever since I hadsurgery (marsupialization) of a Barthalin cyst at age 23. I tried everything: yeastinfection creams, tar soaks, that oaxalate diet thing, Elavil, steroid creams, meditationetc. Nothing worked for a long time until I went to the New York Center for VulvovaginalPain and was seen by Dr. Glazer and Dr. Rodke, the gynecologist at the office. Theydiagnosed me with pelvic floor muscles that were something like 6 times tighter thannormal, as well as a series of infections. I've been doing biofeedback twice a day sincelast July, and let me tell you, although it is time-consuming and inconvenient, it hasWORKED. It is worth every penny of the ridiculously high prices charged in the office (noinsurance accepted). But since I am fortunate enough to have the money to lay out, I havehad the incredible great fortune of having been helped SO MUCH by this treatment. Mypelvic floor muscles are now almost normal and I have stopped having so many recurrentinfections - one tip from my husband: don't use soap of any kind! Your skin down theregets very sensitive and the best thing to do is just rinse it with water, your vaginacleans itself so don't worry about not using soap, especially if you eat healthy. I can'teven describe how much better my life is. Sex used to make me cry, I would burn for hours,it was tight and impossible and miserable and depressing. Now it's almost always not aproblem! I still have some discomfort around my period, but the best news of all: I havebeen so liberated to have sex that now I'm pregnant! I can never say how much thistreatment has changed my life. It is really a miracle. Thank you Drs. Glazer & Rodke!And nurse practitioners Abbe and Donna! After six years of crappy treatment this was arevelation.
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CommentWhere can I find a list of practitioners who offer biofeedback?
CommentLeft off part of my email address on my previous posting looking for a list ofpractitioners that offer biofeedback.
CommentHi, Where can I find out more about Dr Benson Horowitz's study on vulvodynia being agenetic disorder? Someone mentioned it in the first guestbook. Am curious because I havebeen suffering from anxiety for longer than the vulvodynia ,fatigue also, depression, andthere's a history of migraines in my family. Also, my brother has fibromyalgia. Pleasedirect me to anything on this theory.
CommentBarbara, Don't know about Dr Horowitz but do know about the Drs at Cornell U working on agenetic link. Check out website www.nycornell.org/news/press/vulvar/html Hope that helps you somewhat. Diana
CommentAfter reading so many stories about Biofeedback success, I am also wondering where Ican find a list of specialists who offer it. Dr. Glazer, Do you know of the nearestspecialist who offers this?
CommentHello Ladies, hope all are doing well. Just wondered, for those of you out there whoare sensitive to soaps, detergents, etc.., do you find you have to change your laundrydetergent every year or so? It seems just when I find a detergent that is really mild andnon-irritating, and use it for a while, it starts bothering me again. I was using SA8which is truly supposed to be one of the best detergents out there for not leaving behindresidue, but I think that even this is starting to bother me. What's next? Plain water? Ihave sensitive skin anyways, I can't wear jewelery, some make up bothers me, I even had toleave dentistry because I could not find gloves that did not make my skin break out inhorrible in rashes and swell up. What detergents do you all have luck with? Another thing,when your in the shower, how do you avoid getting soap and shampoo from getting downthere? I guess I'm not very inventive. I need advice. feel free to e'mail me, or just posthere, I check it often. Best of luck to you all! Rebekah
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CommentCould someone please advise email me kellish@ivillage.com as to how I can access thecurrent guestbook as book 11 only goes up until March 11. When I search for book 12 I getno result. Many thanks
CommentI found your site very interesting. I can't afford to come and see Dr. Glazer but itwas nice to know I'm not the only one going trhough this pain. I've took lots of medicine,had a partial vulvectomy, had a trigger point injection and I've had two epidural blockswith more to come. I take neurontin three times a day. Nothing has helped. I feel like Iam at the last resort of treatment.
CommentHas anyone had any success with calcium citrate supplements? I read a brief summary ofan article claiming successful remission from symptoms after a woman began taking thesesupplements. When she stopped taking them, the symptoms returned. Just wondering if anyoneelse had tried this. I figure, it can't hurt to try since most of us should take calciumanyway.
CommentI just wrote yesterday but I've read so much since then. Someone mentioned Rosacea, Iwas on Metrogel and now on Metrocream for my face for three years now. I use Proactiv thatyou order off the t.v. and I don't have to use a antiobiotic for the condition. I've nothad a broken tail bone but the bones seem abnormal. One sticks up further than normal. Idon't know if any of these things have anything to do with the pain, but I just wanted tolet people know that I do have these problems to go with my vulvar pain.
CommentjJust a short respones to Sarah. I take Citracal Calcium Citrate along with my othermeds. It seems like since I started the Citracal I don't burn as much. It wouldn't hurtfor you to try it. I also wanted to let you all know after reading these pages, I sent ae-mail to Oprah. I got a short note back from her staff acknowlegeing my request. Istarted reading this guestbook about 9 months ago. I have gotten alot of helpfulsuggestions on how to deal with this condition. What works for one may not work for all.But I wouldn't want to see this site taken off because of a few mistaken words by a coupleof women. I think we are all looking for the same thing. A CURE!
CommentM.J. What happen awhile back is done and forgotten. Misunderstanding. I haven't seenanyone come to visit this site since you opened a healed wound. Ladies, please come back,and let that last entry before mine just roll on off of us! Terry
CommentI have suffered from what I now understand to be Vulvodynia for the past 12 years atthe time of my first experience with sexual intercourse. I have burning pain withintercourse and some irritation off and on throughout regular life. My husband isextremely understanding and we've tried to make the most of our sex life with everythingbut intercourse. I think this website is GREAT. At the time I first started suffering, Iwas in college with little experience and no support, and when I tried to find out moreinformation, I found nothing. I went to several doctors and to no avail. Most said it wasall in my head and not to worry about it. Yeah, right. I also had recurrent bladderinfections, yeast infections and urinary tract infections. Later I got up the nerve to trypsychotherapy/sex therapy which also didn't help. I'm also on Prozac for mild depression.One doctor suggested Xylocaine, which I believe is just attempting to mask the problem andit didn't even do that anyway. Another doctor who seems knowledgeable in VV perscribedEstrace when he discovered I had low estrogen levels, similar to those of a young girl ora post-menopausal woman. I'm 33. Estrace did not help. I have also gone through pelvicfloor physical therapy (not biofeedback) but it also didn't show any change. Now I'm inbiofeedback physical therapy and although my physical therapist thinks that my muscle toneand control can be improved with biofeedback, she's not too sure about the burningsensations. And that is the majority of my pain. I have heard about the low-oxalate dietwhich my doctor says are very restrictive. Are they as terrible as I'm lead to believe?I'd like to try to take Calcium Citrate or an "anti-oxidant" first. Are thesetwo "drugs" the same thing? Also, I am coming to New York in May and amwondering if I should visit Dr. Glazer or if I'm on the right track doing the biofeedback,here which is in St. Louis. Does anyone out there know any doctors in St. Louis whospecialize in VV. Once again, thank you for this site. I think it's a wonderful way toconnect with others, not feel so isolated in our misery and learn about new treatmentoptions. PS: I wrote an email to Oprah asking her to address VV on one of her shows.
CommentBack again! Just curious. When many of you say you have chronic yeast/bacterialinfections, but tests came back negative, what were your symptoms? Were they the"usual" burning, itching, discharge? This is what confuses me about theinfection part. Isn't an infection, an infection. I notice, sometimes, when a culture insent to the lab, it comes back negative. When my doctor looks at it in his office, he saysI have an infection. Symptons are always the same.
CommentI have found no remedy that works. I use Estrogen Cream, Have tried localized painointments both prescription and over the counter - all increase my pain - includinglodocaine ointment. Sitting increases pain. I have no sex life at all. I am anxious tofind something that will at least reduce the aqwful pain so that it is more bearable. I amresearching your method and may make an appointment to see you in NYC.
CommentFirst off, Lois, I never had the classic yeast infection symtoms when I was diagnosedwith vulvodynia, and cultured to find that I had yeast. No discharge, just the raw burntfeeling, sensitivity, stabbing pain, of vv. Secondly, I also e-mailed Oprah's staff andgot a "form letter" type response. when are they going to respond? Has anyonegot any real interest out of them yet?
CommentI finally got an email from Oprah's show the other day, but it was to promote her newmagazine called O.
CommentHello, fellow Vulvanites! I have suffered with this horrible disease for 10+ years now and have felt all thehorrors that many of you have written about. Lately my biggest problem is doctors withtheir heads stuck in their ..... well, enough of that sort of thing! Needless to say, Ihave had the most awful experiences with doctors/hospitals/treatments. I also believe thedisease itself has to do with soaps, pads, dioxins basically. So far precious littlerelief has come my way, but I have recently come up with the low oxalate diet and calciumcitrate suppliments, which seem to be helping. Epsom salt baths are also good. Xylocaineto numb the area out. And washing the vaginal area a great deal to keep it clean (no soaps- just plain water - I'm lucky enough to have a natural underground spring for my watersource where I live, so no need to use distilled water, but even the thought of puttingchlorinated water on my 'bits' makes my teeth hurt) Folic acid also seems to help. And, asI'm a chocoholic, I've had to cut out all forms of chocolate. Ouch! I would very much liketo hear from someone in British Columbia, Canada, with the same problem. Just a buddy totalk to once in a while, and so I can be a buddy to someone who may need a shoulder oncein a while. I am 37, married 11 years, and have two wonderful sons. Of course, my sex lifeis almost non-existent ... and now it seems I have begun the signs of fybromyalgia.(another disease the doctors, at least where I am, think is an 'imaginary illness') I musthave the best imagination in the world, 'cause I sure seem to amass these 'dreamt up'illnesses. Let me tell you, if one of these doctors suddenly woke up with a lesion on theend of his pee-pee that made it impossible for him to pee or have sex with his wife ...and if said same doctor came up with fatigue and sore joints ... suddenly these 'imaginedillnesses' might become a very real issue in the medical community. If these doctors wereactually in the medical profession out of caring for fellow human beings who are sufferingit would not be possible for them to be so cold and callous about these horrendousillnesses. Looking for a vulva-buddy out in British Columbia (smile) Colleen
CommentHi all, Hope everyone is having a good day. I haven't heard anything back from"Oprah" but I did get an email back from Goodhousekeeping. They have donearticles on vulvodynia in '93 and '94 so I thought they might be a place to start. TheConsumer & Reader Services person--Susanne Williams-- said she would pass the email onto the Health Editor for review since it had been quite a while since they had coveredthis. I thought maybe some other women would like to email also. I thought the more peoplewho write, the better chances something will be printed. I just signed onto their website www.goodhousekeeping.com and clicked onto the contactus area. They were very prompt with their reply. Hope everyone is taking good care of themselves. Diana
CommentTouche'Colleen! We should really emphasize the point about if this were a man'sproblem, something would be done about it. I wrote to Oprah that "vulvodynia would bea household word" if this were a man's problem!!! You'd think a woman concerned withwomen's issues would go for our cause, wouldn't you? Also, I read an article years ago inGH too, long before I had the vv symptoms. Regarding the low oxalate diet: it is myopinion that the diet is not the answer, there may be some good suggestions, ie: nocaffeine, but if you look at the recipes offered in the low oxalate cookbook (put out bythe VPF) they're all not that healthy, there's a lot of bisquick usage. I firmly believethat the real key is SUGAR, including simple carbs. Sugar is an "invention" ofmodern times. The body cannot process it properly. I believe that it affects most, if notall people in different, but equally destructive ways. I'm hooked on it! I try to gothrough the day without it, and by evening I've caved in for cake, cookies or ice cream.On the rare occasions that I've avoided it, my symptoms, and aches and pains, disappeared!Yet I cannot give it up, I'm a real junk food junkie! If anyone agrees or disagrees, I'dlove to hear your story. Best wishes to all you fellow sufferers.
CommentHey, ladies, I hope Springtime is brightening spirits and hopes. Every once in a while someone askshow to get to a certain guestbook that may not be listed at the current time for somereason. It's easy to get to another guestbook. Look up at your address bar, see where itsays guestbk11? Just change it to guestbk10, or 9, or whatever, hit enter, and voila,there you are. Hope it's helpful. I was wondering, does anyone else out there NOT have the stabbing pains? My onlysymptom is and always has been (since I was 10) is itching where there is hair. That's it.I don't believe my muscles are tense. The only problem is itching. After I had my baby, Iwas terrified that I was starting to get the stabbing and burning internally that I readabout, but it went away after several months, I believe it was just from a vaginaldelivery. I don't know how women live with that horrendous stabbing pain all the time. Iam thankful that my problem is less severe than so many. Anyways, my instincts tell methis is just nerve damage, I can pinpoint the exact event that started it all. It wouldmake sense that it is nerve damage. I was wondering if anyone else out there has similarsymptoms, and what might work. It seems accupuncture would help, but where do they stickthe needles? That kind of freaks me out. I have found a med that helps. 'caine drugs. Iused vagisil (which is benzocaine cream), but was informed that it has a severe reboundeffect. I am about to go to the pharmacy to pick up another 'caine ointment prescribed byUniversity of Michigan's Center for Vulvar Diseases. I can't remember the name of thedrug, I think it's either lidocaine or xylocaine. These 'caine drugs actually provide 95%relief for several hours. This is great, but I'd like to be free of it all the time withno gross ointments. Don't get me wrong, I am very thankful that I get such great relief, Ijust want to be normal again. I don't remember life without this. I'm so darn sick of it. Best of luck to all of you wonderful ladies. Rebekah
CommentAfter reading alot of the letters from you all, I was wondering if any one knows ifFybromyalgia is inherited? My mother was told she had this disease about 2 months beforeshe passed away. Now that I think of it she always complained about burning pain when shewould go to the bathroom. It just seems to me she probably had Vulvodynia too. I hope thisis not passed on, as I have a daughter. And I wouldn't want to see her suffer the way Ihave in the last 2 years. I was just interested if anyone knows about the two illnessbeing passed on from mother to daughter. Thanks. I am wishing and praying for you all tohave better days.
CommentM.J. According to Dr St Amand, Fibromyalgia is inherited. You can find more information atwww.guaidoc.com He has been working with Fibro for years now and he has a book that tellshis protocol and theory. Hope you get the information you need. Diana
CommentM.J., I hope that this disease is not inherited because I have a daughter as well. If this helps, my mother is 68 years old and has never had vulvodynia nor fibromalgia,so if it is inherited where did I get it from? My mother has had alot of other problemslike ovarian cysts and infected fallopian tubes when she was younger (she had ahysterectomy at a relatively young age). I pray that it is not inherited.
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Commenti first posted around 3/26/00. i am posting again to say a few things i just read. i amprobably "catching up" w/ the site 1x/ every 2 wks. or so. rebekah, i went foraccupuncture this week & he said i have liver problems, but not like the drinking mansdisease. my accupuncturist speaks broken english and is hard to understand. i asked himwhat he meant, but he didn't answer. i had 12 needles in, one in the top of ea. foot, onthe inner right leg, i had 3, & left leg, 2, one in each knee,one on either side of mypelvis, & one in the back of my neck to the left. they do not hurt at all. i feel thecirculation. it's very relaxing!! i always fall asleep. i go regularly for neck pain. hetold me i should only need a few tx's, and should be able to go off med's. i'm not so sureabout that, though. he told me no sex for a week so the swelling can go down. i'll let youknow more later. i only have pain immediately after sex, sometimes maybe the next day,sometimes when i urinate. like i said on my previous posting, i take amytriptlene, &use a cream. it comes & goes, really. lately i have been w/out anyway. i have noticeddsince reading this site that most of you have herpes, or fibromyalgia (sp?) or somethingelse. i don't ever get infections, never did! but i do have HBV. but that is all. i first"got" VV as a result of being sensitive to something my boyfriend drank whichcame out in his semen that made me sensitive. ever since then, pain always. i wasdiagnosed early on thank goodness. anyone else have any ideas about the liver thing? iread about the oxalate diet, but i can't do it. love tooooo much of the bad foods. it'sway too hard for me. i'm hoping the acupuncture helps. my gyn doctor told me when i get tobe pain free for a significant amount of time i can go off the amytripilene. no such luckyet! please feel free to reply to me with ideas and suggestions. thank you.
CommentLisa, hi, I am very much interested in anyway if this accupuncturist is helping. Itested negative to every test avalible, biopsy shows cronic inflamation with no evidenceof viral, bacteria or or cancer. The inflamation does not show inside the vagina or outside either. Only under the skin. My wet prep showed high white boold cell count in thevagina. I am still struggling since recently dignosed but had for a long time. Who istreating for the meds? Terry
CommentI posted a note a while back about the Guai Protocol. Since then I have started theprotocol and it has all gone exactly as described in the Dr's book and by numerous otherson the support list. I thought all along I was fighting only vulvadynia--I have done itall, interferon injections, creams, antidepressents, xylocaine creams, and numerous lasersurgeries, bladder tests and surgeries, etc... I now believe I have had Fibromyalgia(which is inherited in many cases) and am hopeful that if I hang in there and sufferthrough the reversal process that it will reverse the VV as well. I encourage anyone topursue this treatment for the Fibromyalgia before it progesses to the point that thereversal process takes years instead of months. I have to believe that it is stronglyconnected to all the VV symptoms and pray it will relieve much of this as well. Since thetreatment is entirely benign, I cannot understand why anyone would not try it. You havenothing to lose basically except your pain and disabilities. There is no money in it foranyone--not the drug company nor the Dr. Looking back at all the really horrible years oftreatments, surgeries, ya da ya da ya da, this has been the easiest thing to commit to.Good luck to all, I will continue to post every few months to keep up on any progress thatI make. First, with the FMS and more importantly with the VV. L
CommentHello to all. To Jan and Hubby, I too had a lot of the same symptoms. I too paced thefloor day in day out. I was getting depressed and didn't care if I lived or died. But, youforce yourself to get up everyday. I won't let this stuff beat me! That was over a yearago. I still have pain, but my bad days are better than before. I was on a yeast free dietfor candida for 10 mos. I lowered my yeast levels but still had pain, itching etc. My gooddays are not perfect, but I can sit for awhile. I have been on Amitriptyline 30mg a nightfor some time. I believe it has helped (at least with my sleep). At this lower level it issuppose to help nerve pain. I also use AVEENO Anti-Itch Cream. Comes in a small tube(Aveeno puts out many different products, get the very small tube). Also Aveeno SoothingBath treatment helps a bit. Make sure you follow directions and not over use. This is veryhard to face evry day for all of us! Good luck to you Jan and you can be very thankful forsuch a wonderful husband. I'm 53 and married 31 years, thank God sex isn't evrything! Ihope some day there is a cure and we can celebrate! Everyone take care and good luck! Vernie
CommentI've been reading the guestbook for a straight four hours. I have realized that what Ihave is Vulvodynia only after reading your letters. The cause I believe was two back toback doses of antibiotics followed by a third for a supposed UTI. I have had burning onurination, pains in the thigs, burning tongue and mouth, yeast infections symptoms (wnegative results), pains in lower abdomen and anal pain. The Dr. sent me to an OBgyn Dr.who said I had "nothing wrong but probably a urinary tract infecion, the cultureresults were negative. I called to ask him what to do about the pain and he advised me togo to another specialist. After reading the guestbooks I think going to see Dr.s is awaste of time and money they don't know and they don't care. I've been on a food allergydiet for years and have been "cheating" on it, I'm allergic to all thenightshades (tomato, peppers, peanuts, tobacco, eggplant etc.) I am also highly allergicto sulfa both the drug and sulfite foods. I think that these things contribute to thisdisease. I am going to try many of the things suggested ie., citracal, Johnson and JohnsonBaby Body Wash, washing hair in sink, Vitamin B2 in addition to B50's 3x a day, avoidingoxalate foods,even calamine lotion. I have had this before but mainly in the mouth tongueand gut and usd to wonder WHY this burning sensation suddenly started and was so relievedwhen it disappeared. I found that 2 tablespoons of olive oil morning and night andsometimes at mid-day relieved the burning as did liquid Aloe which I would drink rightfrom the bottle in the refrigerator since when this starts you don't really care if you'rebeing polite. I find that foot reflexology helps a little too. I have only had thesesevere symptoms since February when I was sick with bronchities and took antibiotics butit got so bad I was bleeding from the vulvar and was so red and inflamed I couldn't standit. I was floored when I found this web site by accident and feel so horribly sad that somany women are suffering, and this is the worst suffering, with hardly anyone helping. I'mnot working now, have no medical, and wonder if I can work again with this horriblefeeling, leaking urine sometimes and the pain. I have a boyfriend for the past six months,the first most wonderful decent guy I've met in the sixteen years I've been divorced andNOW what happens? When I feel like crying or get depressed I take my flower remedies whichworked before for depression. When I think back I've had these symptoms off and on formany, many years. But never this acute. I found it very heartening to know that you areall out there and that some of you have offered suggestions that have helped you. Go withGod.
CommentI forgot to say that this incident was also precipitated by eating beets, chocolate,sitting in wet grass in tight jeans weeding, extreme stress, the antibiotics, and possiblytaking MSM which contains sulfites. Hope some of this helps. I'm expecting to get rid ofthis by trying many of your suggestions and using some of my own. I've been into healingmyself for a long time because Doctors never understand what's going on with women halfthe time. I take vaginal estrace and feel it has made the condtion worse for now. I amgoing to try putting it on my wrists instead of inserting it vaginally. If anyone has anycomments or suggestions please feel free to email me. Does anyone know of any Biofeedbackperson in the Tampa or Clearwater area of FL? Thanks and God bless you all.
CommentHi everyone, I've posted here only a couple times (just started last month). I have had vulvodyniafor over 6 years now. To avoid repeating myself you can read my posting toward the end ofMarch, I'd say. Anyways, the reason I am posting again is easy...I strongly recommend any of you whohaven't yet already to visit a physical therapist for a body structure evaluation to seeif you have any structural abnormalities which may be contributing or just might be thecause of your vulvar symptoms. If I had been advised to do this over 6 years ago at myfirst onset of vulvar pain, I very well might not have been here right now!I do notunderstand why at this point any GYN's after finding 'nothing' having to do withinfections, irritattions, etc. don't automatically refer patients for a PT evaluation. Iam livid. This is such a simple thing to do...please do it on your own ...it certainlycannot hurt!! All the best, Tammy PS I have been seeing a wonderful PT for over a year now -Holly Herman. My hip is'rotated' - the guilty culprit of this wicked vulvodynia. I recently visited achiropractor who is 'amazed' at how 'tight' my back, lower back, abdomen muscles, thigh,hamstring..they should not be.....this is all connected to your pelvis, girls. To readmore on chiropracty, refer to Mary's post on ART (dated around 4/1).
CommentHi everyone, I just want to say that some of the burning of vulvodynia can bepsychological. I say this because although I have had vulvar pain, I never experiencedburning in the vulva until recently when I was under great stress. I know the stress wasthe cause because at the time of my greatest stress, my vulva burned intensely. This isnot to say all burning is psychosomatic, but there definitely is psychological component.I am now trying to reduce stress in my life as much as possible. Good luck to you all.
CommentMimi ... I read your note and I can tell you this is one of the most difficult things Ihave had to deal with. I have been in the emergency room twice since this started inDecember 1999. After six blood tests plus an autoimmune test, I came up negative.Fortunately, I found a nurse practitioner in Maryland who treats Vulvodynia and she did aculture, broth method, type of urine analysis, but it too initially came up negative. Whenshe first looked at me she said I has "Strep" and was quite shocked when theuranalysis didn't show it. She decided two weeks later to run the test again and it cameback positive for Escherichia Coli and Strep Group D Enterococcus, which unfortunately Ihad to take an antibiotic for. I am in less pain then I was, but I have lost 30 pounds in three months. I have had noappetite in five months. I have MS, CFIDS, Fibromyalgia, TMJ, Asthma, numerous allergies(trees, grasses, pollen, eggs (white/yellow), tomatoes and corn). I couldn't help noticing in your note that you had burning of the gums and mouth. I amalso dealing similar inflammation and burning. I was checked for Strep in the mouth andnone was found. My mouth, gums, and throat are red and burning. How long did thiscondition last for you (I have had it for at least a month)? I will be seeing a dentist,as well as a throat specialist, to look at this condition. I too take olive oil, two tablespoons at night, but for keeping regular. One thing that has helped me tremendously for the burning urine is to I take ˝teaspoon of baking soda with 8 to 16 ounces of water twice a day. This is to"neutralize" the urine. I plan to go to my rheumatologist on April 17, 2000 in the hope that there is aconnection between Fibromyalgia and Vulvodynia. If you or anyone out there has been to arheumatologist, I would appreciate knowing their experience. I too am not working now. I cannot imagine how you are handling this alone. I havetrouble sitting, standing, walking. Fortunately my nurse practitioner has gotten my painvery much under control. I still have pain but nothing like I had. By the way she was thesixteenth person (doctor) I had seen. I was told about plastic vaginas, you cannotimagine. I had blisters down below for 3 months. I am still very red, raw and swollen. Itoo believe I had this for sometime. This started with tingling down legs and lower backpain. I went on an antibiotic for a triple root canal and all of a sudden all hell brokeloose. I have only been dealing with this for five months I cannot imagine dealing with thisfor years. Hang in their and keep the faith. God bless you and everyone on this site. Ibelieve we will get an answer, but until we do, let's go on communicating with each other.
CommentI empathize with all of you. I know your pain. What's so difficult about this diseaseis you can't share it with just anyone. It's hard to tell your colleages--"No, Idon't feel well today because my vagina's itching or burning." If we had a broken armor allergies or some other dibilitating problem, it would be easier to share withothers--and perhaps gain their understanding. But with this problem, I keep it bottledinside. Only with a select few do I share this. How disheartening! How wonderful it is tohave this site--to be able to vent and share with other women who understand, who care. I've been itching vaginally for almost three years. No pain really. Just intense deepitching. I've tried everything. Had every STD test. Nothing. I am hopeful, though. I amgoing to see a Dr. who specializes in diseases/problems of the vulva/vagina. I pray thatGod directs him and gives him wisdom. This trial is breaking me, forcing me to realizethat it will make me or break me. I will give up and give in, or I will fight. I encourageall of you to fight. Don't give up. There's hope, for without hope, we have NOTHING. If any of you have any advice for me, please e-mail me at danaclark2@hotmail.com God bless.
CommentHi Ladies, Just wanted to share my story briefly with all of you. After suffering badlyfor a year, I finally found out what was causing my vulvovaginal pain. After countlessvisits to various Gyn's, I finally found a wonderful doctor at Cleveland Clinic Florida.His name is Steven Zimberg, M.D.Cleveland Clinic Florida is located in Fort Lauderdale.They have an 800 #. I urge to give Dr. Zimberg a try, if you live near the area. He foundfecal matter in the vagina. The cause was a very small recto-vaginal fistula.(hole). Hethinks I might have diverticulitis which caused this. I also have vaginal atrophy. I'm avery young(in spirit) 61. I had always refused to take hormones because of all the cancerin my family. He convinced me to try a vaginal cream. I had been through a number ofcreams,mostly with disastrous results. It has been three weeks, and I feel much better. Heassured me that the cream would not impact the bloodstream, thus allaying some of my fearsabout cancer.The name of the cream is Ortho-Dienestrol. I use one-half applicator fulltwice a week. Dr. Z. says it will take 4 to 6 months to close the fistula. If it werebigger, I could have opted for collagen glue or stitches. By the way I also haveFibromyalgia. I fell on my backbone about 13 years ago when I was hiking. The pain fromFibromyalgia and the backbone was Nothing compared to the vulvovaginal pain. I am urgingall of you to ask your docs about the possibility of recto-vaginal fistulae. I knowvulvo-vaginal pain can have many causes, some unknown. I also urge you to e-mail, write,or call Oprah Winfrey. I just finished e-mailing her. If we all bombard her with ourdesire to have this problem aired, I think it will come to fruition. If you are too sickor weak(as I once was), get a friend or relative to do it for you. Remember there isstrength in numbers, and hope out there.I don't believe I would ever say this. Much loveto all of you. May God bless all of you Thanks also to Dr. Hope Haefner at U. of Mich. forputting me on Neuontin. That helped with the pain, but not with the cause. I am eternallygrateful to these two dedicated and competent physicians.
CommentDear Dr. Glazer, Please consider adding Steven Zimberg, M.D. to your list. He hashelped me so much. He is not only extremely competent professionally, but is kind,compassionate, and really listens to the patient and the family. He is currentlypracticing at Cleveland Clinic Florida. It is located in Fort Lauderdale, FL. The 800 # is1-800-359-5101. His credentials are most impressive. He does not even know I am doingthis. I am not related to him or his family. My husband and I think he is the greatest. Iwould also like to recommend Dr. Hope Haefner at the U. of Mich. Also, great. Thank you.Your website is really helpful.
CommentDear Dr. Glazer, Please consider adding Steven Zimberg, M.D. to your list. He hashelped me so much. He is not only extremely competent professionally, but is kind,compassionate, and really listens to the patient and the family. He is currentlypracticing at Cleveland Clinic Florida. It is located in Fort Lauderdale, FL. The 800 # is1-800-359-5101. His credentials are most impressive. He does not even know I am doingthis. I am not related to him or his family. My husband and I think he is the greatest. Iwould also like to recommend Dr. Hope Haefner at the U. of Mich. Also, great. Thank you.Your website is really helpful.
CommentHi ya'll, Today is my 29th birthday and I just found out that I have vulvarvestibulitis. Wow, what a birthday present. In the Dr.'s office I was shocked....I hadfinally found someone who could tell me what's been wrong with me for the past 4 years,but it was also depressing as the doc told me that we can't fix it. I've been having theyeast infections and vaginosis for so long. Every time I would go to the doc they wouldsay "it's yeast...here's a cream" or " it's bacterial...here's anantibiotic". When I finally got them to realize they weren't fixing me, they wouldgive me antifungals and antibiotics at the same time. Still no resolution. One doctor evensaid, "Well, this discharge and itching may just be Normal for you. Don't worry aboutit..just use an itch cream." WHAT?? NORMAL??? Excuse me, I know MY normal and thatwasn't it!!! I'm still trying to absorb all this information and I'm getting kindadepressed. I just want to be better. And what's up with this low oxalate diet?? I'm fromGeorgia, I can't give up grits. I'll die. Anyway, I'm so glad that I found this site. Somany of you have gone thru my exact situation and it makes me feel better to know that I'mnot a freak. I would love to talk to anyone who wouldn't mind sharing. I have really beenfeeling alone in this....WHAT IS THIS THING I HAVE???
CommentWelcome Lisa, Happy Birthday!, not so great a gift, but you have a name. I was sittingin your shoes 2 months ago. Believe me, I know the feeling going so long misdiagnosed forover 6 years and I was shocked to hear those very words too. FROM MY GYN: "You havevulvodynia, unfortunately we can not find the cause and there is no cure, we can send youto a pain center, but there are support groups, you are not alone, there's nothing to beembarrased about and you are not imagining the pain. Here, take these pamphets home andread them. I don't know what else to do for you." I have been under a lot of stress from pain for years now and for those 2 secondshearing a name to this pain sounded great, I thought I was one step from recovery. Thenthe BUT came and I was crushed, devasted. My GYN didn't know about this debilitatingdisease before me, I was number uno, I should of won a million dollars for this. AnotherGYN working with her was asked for her advice and she remembered vaguely about hearing ofthis. I would of walked away not knowing anything that day. I am scheduled to see a urlogydoctor Thursday. I am so much hoping for more answers than " yep your in pain "A name doesn't change anything, I need a break from the pain. Just a week would make mehappy. Oprah just isn't getting this, and I am sad because she could make a difference.But I want you to know that if you read way up the list, my first entry is there and I wasalone too. You have all of us here and every little bit of information may help. We arewomen who don't give up! Where would we all be if we gave up? Hang in there, I know itstruly hard. You can write me anytime you wish. I feel your pain. Terry
Commentface it ladies,unless OPRAH happens to get this terrible disorder too-she is going todo NOTHING unless it benefits her!Have as much luck getting help from Jerry Springer asfrom Miss "Thing".
CommentI've had Vestibulitis for about 8 years now. Through anti-depressants, creams andNeurontin, I have experienced some relief in my pain. Last May, I became pregnant and hadto go off of the Neurontin (the only medication I was on at the time). Being pregnantactually helped my Vestibulits - I still had some minor symptoms, but nothing like before.It helped having a specialist who was also my OB. I had my baby the end of January of thisyear via C-section because he was breach. I was concerned the entire pregnancy abouthaving a vaginal delivery in fear that my Vestibulitis would worsen. Needless to say,there was nothing to worry about. It's now been about 3 months since delivery and I stillam feeling "good." I just wanted people to know that it can improve...hopefullyI will be able to stay medication free for a little while because I am also nursing...anexperience I would not give up for anything (not even the pain). I have a check-up in acouple of months where I will undergo a complete physical and exam...I'm praying thevestibulitis will "disappear." I'm happy to share my experiences with anyone whomay need to talk or to have someone listen ...I know all to well what you're goingthrough. God Bless!
CommentI was just finally diagnosed with vulvar vestibulitis. My dr., who doesn't seem to knowtoo much about this condition wants me to try applying vegetable oil or Vaseline. She alsoprescribe lidocaine cream. I have read some of the messages in the guestbook but have notread about this treatment. Has anyone tried this with any success? I wish my doctor knewmore about this. She mentioned another patient who is on the low oxalate diet. She wantsme to try that next if this current treatment doesn't work. Any advice is greatly appreciated!
CommentTo Lisa and Terry (above posts) I have posted here before, a few weeks ago, as I toohave had great relief from acupuncture and urge others to try it. Lisa, the acupoints thatwere used to help me seem to be the same you used, but not my neck, only the lumbar areaof my spine. It took +/- 12 sessions to become pain-free, and I have now had no pain sincemy last treatment approx 3 weeks ago. I had never had acupuncture before but was willingto try, and am obviously extremely pleased with the result. I am also on the low oxalatediet (sort of!) and would kill for a chocolate bar right now! Also use Vitamin E oil dailyand am on antidepressants, so it's likely that these other measures are also helping me,but I feel the acupuncture was the turning point. If anyone contemplating acupuncturewould like to know the acupoints my Dr used, I have them written down and would be glad toshare them with you so that you can pass them on to your acupuncturist. Good luck.
CommentI fell upon this website browsing through Dr. Drew's site. I have been suffering for 3almost 4 years with these exact symptoms, I have beent told countless times that it is allin my head and basically came to terms with it. By finding your website it has given mehope that I can be cured. The next visit to my gynocologist I am bringing the informationprovided by your website so they can accurately diagnose me. I still have not beendiaganosed with vulvodynia, but feel this is what I've been struggling with for years.Thank you for providing such great relief and information to those who suffer.
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CommentJust wondering if anyone out there has been pain free for a subatancial amount of time.I don't think I hve quite as a severe case as some of you and of anyone with a less severecase has had success in treatment. I'm scared to death that I won't be able to eliminatethis problem. From every thing I've read 80 percent of patients with this condition neverget better or they get considerably worse. I shudder at this thought. I have recenlty readof a docter who used topical estrogen creams along with calcium citrate and biofeedback.The success rate was around 70% of women being pain free as long as they used this regimenover a long term period. the dosages were high at first for the topical estrogen and thencut down to every other day which maintained a pain free level. Has anyone with a lesssevere case ever tried this and had success???? Also has anyone ever had success withsteroid creams??? I sure don't want to escalate the situation by using such a cream asI've most using this don't have any success at all. I havent started any therapy yet. I amgoing for a biopsy next week, but the doctor mentioned a steroid cream. Can anyone help meout with any info on this subject????
CommentHello, I am a sophomore in college and was diagnosed with vestibulitis about 3 monthsago without ever having had prior problems of any kind. It is extremely frustrating notknowing why this happened to me but it is good to know that I am not the only one outthere dealing with this. I have tried a few treatments so far with little success and Iappreciate everyone who writes in about what treatment(s) are working for them, I willdefinitely be asking my doctor about them on my next visit. This is a very upsetting thingto go through and I hope we all continue to offer moral support to each other. Thank youall. good luck, Lauren
CommentFor Colleen (post above) re: steroid creams. I was using various steroid creams over a2-3 year period and didn't get much relief from them, but have since been told that theyare not a good thing as they thin the skin and make it more delicate and therefore moresensitive. However I recommend you discuss it further with your Dr. This is just what Ihave been told and you would need to confirm it. It makes sense though. Get a few moreopinions before you try it I think. Good luck.
CommentHello everyone....my heart goes out to you all as I too suffer from vulvodynia. I wasdiagnosed last August but have had an irritated vulva now for over 2 years so it took ayear and a half to get correctly diagnosed! Like many of you, I went through GP after GPand finally onto the gyno merry-go-round. Locally, I was being told by practitioners that'I was focussing on it too much' and basically it's all in your head! But you know yourown body and when you are in pain! I am 32 years old, live in Australia and actuallydiscovered this site after I was diagnosed which was such a relief as finally my conditionhad a name. Thank you for all your contributions. I thought that before I found this site,I was the only one in the world that had the problem! How self-centred of me! I am onlybrave enough now to contribute as I am not as embarrassed to talk about it publicly and inorder to get a solution, we must not hide it! Maybe my experiences might help someone andI am also hoping to meet up locally with someone else that has this problem (I'll rephraseas I'm trying to be positive - 'challenge'). For 1.5 years, I went through hell in tryingto get a diagnosis and had to use all sorts of creams both in my vagina and externally andwas even being mistreated for HPV (nothing showing externally). I also had a laparoscopyas well as excisions of skin and still nothing, except for heading towards poverty! All ofthis only made things worse. I was also on anti-depressants for 8 months but am pleased tosay that I no longer use them. To get my diagnosis,I had to travel to Sydney and am being treated by Dr Richard Reid.Last November, I had surgery (removal of Bartholins glands/hymenectomy/vaginal flapsreconstruction). I am happy to report that the surgery went well and the pain experiencedafterwards wasn't as bad as I thought but I also believe that I was in excellent hands.The surgery actually did not make me feel worse but slightly better. From the beginning ofJanuary this year, I started using biofeedback (through Marek Jantos who travels to Sydneyonce a month from Adelaide - Marek is VERY understanding & helpful and I recommend himto anyone)and feel that it is improving. I normally constantly suffer irritation but withthe biofeedback,I am experiencing 'gaps' in time (albeit small) where I don't experiencesymptoms as much. But even slight improvement is a joy to behold! However, there is aniggling problem that I think is hindering the biofeedback and that is frequent dischargewhich has been diagnosed as bacterial in origin (I've had abnormal discharge for 2 yearswhich is not as severe now but still exists). I don't think I am suffering as badly as some on this site nor as mildly as others. Itseems to be such an individual thing that there are so many different symptoms andtreatments that I believe not one thing will help everybody. I am happy to discuss eitherhere or separately by email about the surgery and/or biofeedback. Before the surgery, mypartner and I had not had intercourse for 14 months. In the last couple of months, we haveresumed relations about once every 3 to 4 weeks so something has worked! I experience moreintense pain afterwards for 3-4 days (burning/irritation/soreness) but then it subsidesinto the normal vulvodynia irritation. I had tears in my eyes when Marek told me that somecouples had never consummated their marriage while another couple had not had sex for 11years! Like Lauren (8/3/00), I think the cause/s must be determined to get to a solution(we need publicity. Someone famous who has this would definitely help!) With me, I believeit has been the anti-thrush creams used over the years but then I also fall into thetypical vulvodynia patient category as I suffer from allergies (pollen, dustmite,cockroach) and have just finished 4 years of injections for this (they worked). Many ofyou have suggested tailbone injuries - I too had one of those when I was a child. It mayeven be what we are consuming...the list of possibles is endless. I notice too thatfemales of all ages can be affected - the youngest I heard was 11 years of age and likemany women I am scared that this could be an inherited condition for our daughters. I am living and hoping for a cure but until then I am learning to live with it bettereach day. I am trying to be positive and am looking at positive things associated withhaving this condition, eg. the slight improvements I've experienced; I have even taken upgolf which gets your mind off everything (I know now why so many men play it - one oftheir secrets I discovered!) This was also for exercise as I found that any type ofvigorous exercise made the symptoms worse! I would otherwise have never taken up golf!!Another positive I want to establish is to make new friends. If anyone out there lives inthe Wagga Wagga or surrounding areas and has vulvodynia (or thinks they may have), wouldyou please let me know via this website. I promise I will monitor it and write to you sowe can get some sort of network of support going for each other. In a town of nearly 60thousand, I can't be the only one! In the meantime, use your close friends and partner for support (I am lucky as I havean understanding partner). The most difficult thing about vulvodynia is that on theoutside we look alright and can't go around answering 'Good thanks, except for the pain Iam experiencing in my vulva' when someone asks how we are at work or elsewhere! If it werenot our most intimate part (such parts that people don't talk about but use often), thenit wouldn't be a problem to chat about! I'll leave you with something funny. Recently, I saw a GP and told her that I hadvulvodynia. Of course, she had never heard of it. I then got charged a double consultationfee for educating her about it! Everyone, please hang in there, there is hope, especially if we fight this thingtogether! Take care.
CommentTo Leanne (above post). I thought I would share with you that I too have taken up golfas I couldn't do the normal exercise and sport I used to do because of the pain. I'menjoying golf but am totally useless! However, it's so good to be out walking in the freshair and not sitting at home feeling sorry for myself. I would like to email you andcompare notes, as I come to Sydney occasionally (I'm in NZ) and although I am currentlypain-free after a course of acupuncture, I don't know if I'll need treatment in the futureif my pain returns, and it's good to know that there are Drs. there that have helped you.Please email me if you want to make contact. Enjoy your golf!
CommentTo Colleen, I let a doctor do a biopsy on me years ago and it made me worse. They did it at the 6 oclock position and stitched it up. Intercourse ripped that scar open every time afterthat. I had to have subsequent surgery to repair that awful scar tissue. The only thing the biopsy showed was that the skin was inflamed and irritated. DUH!! Icould have told them that without a biopsy. It is up to you whether you have the biopsy, but I just wanted to let you know myexperience with it. Good luck.
CommentWas just wondering is anyone else was trying acupunture and if so can you tell me yourexperiences. I am trying this method and I want to see if it is in line with what myacupunturist does for me. Please tell me the theory your practitioner told you about andwhere he/she places the needles. Has it helped? How long you have been doing this? Are youtaking herbs as well? Thanks, Lauren vulvodyniapain@aol.com
CommentSue....you seem to write in the guestbook often so I'm hoping you'll read this too.Your description of pain on the left side sounds like pudendal neuralgia. The pudendalnerve is on the left side and when damaged can cause burning that is stronger on the leftside. Is this what your doctor says? You should look into pudendal nerve blocks. DrMetzger at Stanford in California does these. I've also found that BANANA BOATSOOTH-A-CANE ALOE GEL helps a lot to relieve my immediate pain. It burns at first from thelidocaine setting in but afterwards is wonderfully soothing.
CommentThis is a message for Leanne from Australia who posted here a few days ago. Leanne could you please email me as I would like to hear from other people in Australiawho have vulvodynia. I don't know of anyone else who has. Maybe we could think of ways ofraising awareness of vvd here. I was thinking of writing to Cosmo and Cleo or the weeklymagazines and asking them to do an article on it. They might be more helpful than writingto HRH Oprah.
CommentThe April, 2000 issue of Mademoiselle (the one with Courtney Love on the cover)features a letter in the Sex Q&A column from a woman who complains of burning everytime she has sex. She wants to know if maybe she could be allergic to her boyfriend (isn'tit funny how we rationalize these things?). The response, supposedly from an expert, tellsher that in the absence of infection the cause is probably an allergy to spermicide or--SURPRISE-- insufficient lubrication. Nowhere is vulvodynia discussed even as a remotepossibility. It brought me right back to how frustrated I felt before I was diagnosed. Ifeel Mademoiselle has done a disservice to people reading the magazine and I'm going towrite and tell them that they should be sure to tell this woman and any woman who might bereading and sympathizing that there may be another cause for her suffering. If only Iwrite, they'll think I'm crazy, but maybe if other people write thoughtful letters they'llrecognize the validity of the content and print one of them. I know it's not the New YorkTimes, but lots of women turn to those columns for help and they shouldn't be giving outincomplete information. If anyone else sees the article and wants to write in, the addressis feedback@mademoiselle.com. With luck, we can reach someone out there. Maybe they'lleven run a story on it if enough people write in, but I doubt it honestly.
CommentDK Wanted to let you know I just sent a letter off to Mademoiselle to let them knowthey didn't go far enough with their reply. Hopefully they will notice a few emailsregarding this. We have to get the word out any way we can. I think it is a great idea towrite as many "women's" magazines as possible. What is that old saying--thesqueaky wheel gets the oil. I have already written Good Housekeeping and gotten a replyback, so at least I know they listened. Now we just have to get more listeners. Diana
CommentDK Wanted to let you know I just sent a letter off to Mademoiselle letting them know theirreply didn't go far enough. Hopefully if they get several emails they will pay attention.We need to get the word out any way we can. I think we should write as many"women's" magazines as possible. What is that old saying--the squeaky wheel getsthe oil. I have already written Good Housekeeping and gotten a reply. Now we just have toget more people to listen. Diana
CommentDear Diary. I'm back at work today. This is the first time in 12 years I missed workbecause of "this." The pain was real bad. I'm seeing the doctor Wednesday. Thecortisone cream he gave me helped a little, then my husband and I thought we would"try." This is the worst I've been. The burning around the opening has subsideda lot over the years, still get infections, although at this moment I don't think I havean infection, but the pain near the clitoris is unbelievable. I don't remember how longthe doctor said before the cream would help, or even if he said it -- it's been a month. Ineed to ask him Wednesday. I wish I could think of something else, but it's not easy whenyou're hurting. Sometimes I dream that my husband and I are making love and there is nopain. I need to go now, my boss is coming back and he's in a crummy mood because he had todrive his wife's Mercedes instead of his Jaguar, and here I am wishing I could cross mylegs and wear underwear. Go figure! Talk to you soon.
CommentDoes anyone have experience taking neurontin? Has it worked for you? If so, how much doyou take, and for how long did the sleepiness last?
CommentI have been suffering from chronic yeast infections. I just recently started douchingwith 2 tablespoons of boric acid in 2 quarts of water. It has helped, but the infectionreturned. Please, if anyone out there has ever douched with boric acid, or inserted boricacid capsules vaginally, can you tell me how long you did it for? And if it was effective.Trust me when I tell you I have tried Terazol, Monistat, Diflucan, Acidopholius, GarlicPills, etc... This is about my last hope.. Thanks so much, and thanks Dr. Glazer. I am still going strong after my biofeedbacktreatment. I have been 95% pain free now for 8 months now. And the 5% that occurs veryinfrequently is "liveable"!!!!!!!  |
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