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CommentWelcome to the twelfth vulvodynia guestbook.
CommentTo Jen regarding neurontin -- I took Neurontin for almost a year. It didn't take thepain away, but seemed to take the edge off of it a bit. It made me more than sleepy -- itmade me extremely groggy and confused. So I only took it at night. And my doctor suggestedtaking it a couple of hours before going to bed, which helped me wake up a little morealert. But I've been gradually weaning myself off of it and now no longer take it. I didn'tfeel it was helping that much and I was nervous about taking that serious a drug for solong. You can also try working up to whatever dose your doctor suggests. I made mine give me100 mg. capsules, in addition to the 300 mg. capsules she initially prescribed, so I couldgradually increase the dosage myself.
CommentTO LOIS- BOY DON'T I UNDERSTAND THE IRONY OF OTHERS COMPLAINTS (THOSE WITH SUCH TROUBLEAS WHICH EXPENSIVE CAR TO DRIVE)! I'M NOT ANGRY BUT I DO SIT ON THE PITY POT FROM TIME TOTIME. AND I HAVE ALSO DREAMED ABOUT MAKING LOVE TO MY HUSBAND IN A NATURAL STATE, YOUKNOW, NO PREPARATION, NO CRINGING FROM THE PAIN, NO JUMPING UP THE MINUTE IT IS OVER TOPUT A COLD WASH CLOTH OR ICE ON MY VULVA.. OH TO BE ABLE TO HAVE SEX LONG ENOUGH TO GETREAL ENJOYMENT OUT OF IT. MY HUSBAND IS SO UPTIGHT THAT HE IS CAUSING PAIN, HE ALWAYS GETSIT OVER QUICKLY. WE USED TO CUDDLE WRESTLE AND PLAY, BUT THAT IS ALL GONE. I HAVE BEENMARRIED FOR 22 YEARS THIS JULY AND HAVE HAD VULVADYNIS FOR THE PAST 17 YEARS, BUT WASNEVER DIAGNOSED UNTIL 3 YEARS AGO AND BELIEVE ME YOU WILL END UP KNOWING WAY MORE THEN THEDOCTORS YOU WILL GO TO SEE AND ALL BECAUSE OF THIS SIGHT. THIS WILL ALSO BE YOUR BIGGESTSOURCE OF ENCOURAGEMENT AND SYMPOTHY, AND YES SOMETIMES EVEN HUMOR. WE NEED TO STAY INTOUCH WITH THIS SIGHT ALL OF US SO WE ALL HAVE SOMEONE TO LEAN ON WHEN THE GOING GETSTOUGHER THAN WE THINK WE CAN HANDLE. I HAVE CONSIDERED SUICIDE MORE THAN ONCE, BUT TRY TOHANG ON FOR THE BIG CURE!!! BE SURE NOT TO FORGET TO POST IF YOU FIND SOMETHING NEW THATHELPS YOU, AND UNTIL THEN CHIN UP, KNOW YOU ARE NOT ALONE, AND KEEP IN TOUCH.
CommentI first told my story (bdewitz) in the second guestbook in July (??) of '97. I was still married for the second time, and still hopeful that there might be somerelief for this wretched VVS. Since that time, I have been through my second divorce, andI have pretty much given up the illusion that I will ever have intercourse again. It hasbeen nine years, and I have learned that it is relatively easy to live without sex, aspain is a pretty potent inhibitor. I rarely ever discuss the problem--no one seems to haveany new information, and even my very closest friends are not terribly sympathetic. Thepain every time I urinate, which is very frequently (it burns like fire) and the fact thatit often hurts just to sit down, are not helped at all by their lectures about how I amlucky that I don't have cancer or some terminal or progressive disease. I have not been treated for VVS for many years now, as there is no one in my area thatmy insurance will cover who even knows what VVS is. If I could afford to pay out of my ownpocket, I could go to Madison, WI, an hour away, and perhaps be treated, but all of my"disposable" income (anything left over after I buy groceries and pay the bills)goes to pay for my 18 year old son's mental health treatment, which of course, is NOTcovered by insurance. (We all know the head is not connected to the rest of the body.) The quack who butchered me in the first place back in 1991 has long since retired, andI have let go of much of the anger that consumed me for years. My condition has remainedpretty stable, although I have some new and very unpleasant things happening. A recent yeast infex that presented no usual symptoms caused such vaginal and rectalpain that my doctor had NO idea what was wrong with me until he physically examined me.Now THAT hurt. An excruciating, intermittent, pulsing pain in both the vagina and rectumlasted two days and sleepless nights, and finally subsided after taking Diflucan for twodays. Can't help but wonder what role yeast plays in this mess, as I have had so very manyinfections over the years, and am now resistant to many treatments. A month on Diflucanfinally cleared up a vaginal yeast infection that eventually attacked my whole system lastwinter. And although my second marriage never included intercourse, divorce was more a resultof my ex's inability to deal with my son's mental illness than anything to do with anincomplete sexual relationship. The lack of intimacy surely did not help matters any,though. Enough rambling. Thanks for being here.
CommentSince you all enjoyed seeing a copy of my letter to my OBGYN, I thought I'd show you acopy of the letter I'm sending to my college health service, which has an online bulletinboard for sex questions. Maybe some of you will want to write to doctors or educators whohave made your search for answers more difficult, and if you do feel free to plagiarizefrom me all you want. Anyway, here's what I wrote: "Why is it that you've got dozensof archived messages from women who have pain during sex and not a single one of youranswers mentions anything other than vaginismus or some sort of infection? Is yourclinging to vaginismus just a sign that you believe women's pain during sex must bepsychologically caused if you can't find an infection, or have you just never heard ofvulvodynia and vulvar vestibulitis? How about lichen planus? Pudendal neuralgia, anyone?Is it because most of your students are white and you think white women are afraid of sex?What are you DOING? By the way, your response to a woman who write in asking is kegelexercises could help her realx in which you tell her they will do the opposite is TOTALLYoff base. Why are you pretending to be an expert when obviously you haven't picked up ajournal in the past ten years? You are probably doing more harm then good and should referthese patients to a vulvar pain clinic and not just the GYNs at Health Services who thinkincomplete or wrong information is better than admitting ignorance."
CommentHi Ladies, Well I have a request. I am asking for as many emails as possible with small bios anddescription of vulvodynia. What I am going to do with them is personally stand by thestagedoor of the Vagina monologues when Donna Hanover Guiliani is in it in May and see ifI can get her to read the emails and I am also enclosing a newsletter and some websites.If she is intersted enough in being in a play about the vagina perhaps she might beinterested in helping us. You don't need to use your main email address. In fact I suggestyou open a yahoo or mail.com account. Lat names are not important. Please sign your firstname and the state you live in. I think this could be the help we really need. having awarm body infront of her handing this packet to her adds to the emotional side of thisdisease. It is a strong way to get some attention and it might just work. Since I live inNYC I am going to do this. I hope I can have some help from you. I canmake no guarentees.But I will do my best and I will make sure this packet gets into her hands. PROMISE! Please send a short email detailing your experience to vulvodyniapain@aol.com I know you all know how to write since you left a post here. Thanks Ladies! Lauren vulvodyniapain@aol.com
CommentHi Ladies, Well I have a request. I am asking for as many emails as possible with small bios anddescription of vulvodynia. What I am going to do with them is personally stand by thestagedoor of the Vagina monologues when Donna Hanover Guiliani is in it in May and see ifI can get her to read the emails and I am also enclosing a newsletter and some websites.If she is intersted enough in being in a play about the vagina perhaps she might beinterested in helping us. You don't need to use your main email address. In fact I suggestyou open a yahoo or mail.com account. Lat names are not important. Please sign your firstname and the state you live in. I think this could be the help we really need. having awarm body infront of her handing this packet to her adds to the emotional side of thisdisease. It is a strong way to get some attention and it might just work. Since I live inNYC I am going to do this. I hope I can have some help from you. I canmake no guarentees.But I will do my best and I will make sure this packet gets into her hands. PROMISE! Please send a short email detailing your experience to vulvodyniapain@aol.com I know you all know how to write since you left a post here. Thanks Ladies! Lauren vulvodyniapain@aol.com
CommentHas anyone tried Neoronton to treat their pain? A doctor friend of mine suggested it asa new treatment for chronic pain that may be neurologicaly based. (His statement was thatthis may be "all in my head," not in a psychological sense, but a neurologicalone.) Anyone?
CommentHas anyone had any gynocological side effects from using Estrace or other topicalestrogens? Several months ago, my gynocologist prescribed Premarin, which helped reduce the pain.But a few months afterward, my periods became really irregular and painful and I developeduterine polyps. My gyn said they weren't related -- that the topical estrogen doesn't getinto the system. But I stopped using it anyway and few months later, things were back tonormal. Recently, I saw a nurse practitioner that specializes in VV -- she prescribed Estracewhich I know has helped many woman. I expressed my suspicions/concerns about Premarin,which she immediately dismissed. So thought I'd give Estrace a try. (At this point, I'lltry anything.) It has helped the pain tremendously, but once again my periods seem to be affected andthis time, my body thermometer seems to be out of whack. I'm constantly too warm and oftensweaty, which is completely unlike me. (A bit like what I assume hot flashes might belike. I'd suspect I'm having early menopause, but this started a week or so after Istarted using the Estrace.) Anybody else have side effects like these? What did you do? kathy
CommentHello Is there any one that can HELP ? All that i have read leaves me to believe that Iwill have this PAIN for the rest of my life ! Is this true or can some one HELP ? Itseemed to start after i had my 2nd child. I kept thinking that the doctor left somethingin the tearing ,or sewed the nerves together ? It`s been 2 & 1/2 years with this pain,countless doctors / specialists. numerous pills creams ect. They seem to pass me back& forth to a GYN to BOWEL doctors to surgery/ tests .I cant count the times i havebeen tested for ALL the kinds of infections...... H E L P ME PLEASE...I`AM GOING CRAZY...............
CommentHello Is there any one that can HELP ? All that i have read leaves me to believe that Iwill have this PAIN for the rest of my life ! Is this true or can some one HELP ? Itseemed to start after i had my 2nd child. I kept thinking that the doctor left somethingin the tearing ,or sewed the nerves together ? It`s been 2 & 1/2 years with this pain,countless doctors / specialists. numerous pills creams ect. They seem to pass me back& forth to a GYN to BOWEL doctors to surgery/ tests .I cant count the times i havebeen tested for ALL the kinds of infections...... H E L P ME PLEASE...I`AM GOING CRAZY...............
CommentIf there is anyone in Australia reading this guestbook who has vulvodynia please emailme. I would really like to discuss doctors, treatments etc with someone in the samecountry. Also do any of you find that your vvd is affected by your menstrual cycle? I think mineis. And is that harder to treat than vvd caused by other factors such as oxalates (you cantry the diet) or tense muscles (you can try biofeedback). Has anyone been successfully treated for vvd caused by hormone problems? What was thetreatment? I would like to know all my options before I seek medical advice as I know thatthe wrong treatment can make vvd worse.
CommentI really enjoy reading your entries as you all offer so much support to me and I canrelate to so many of your entries as I have experienced exactly the same thing! Thank you, Lois, (4/20 entry in previous guestbook) for the entry on the upset boss whohad to drive the mercedes instead of the jag! I had a good laugh. Since I have beendiagnosed with VVD, I often contemplate on how trivial my previous problems were (which atthat time I thought were huge!) Obviously, your boss has never had any serious problemsyet in his life! However, it's easy to be harsh when you compare your situation with otherpeople but it's probably unfair as everything is relative to a person's experiences whichin the game of life are very unpredictable. I am sure that most people at some stage intheir lifetimes experience some sort of heartache that is prominent for them. I try anddeal with them the best way I can. Lois, I remember (vaguely now) the days when I enjoyedspontaneous love-making with my partner. Now they are planned to correspond with when I'mfeeling not as bad down there (which isn't often). To Tammy who posted on the 4/21, YOU ARE NOT ALONE. I am amazed that there are so manyof us and we are now onto the twelfth guestbook which is why something must be done aboutit! If it were not for this site where we can share our experiences, I am sure I would besuffering much more stress. When I am down, I do try and think that I am not alone in thisand that we are all there for each other. Although it doesn't always stop me from having adown time (I tell myself that this is normal when you experience illness/ stress). Onlylast night, I thought to myself that I would love someone to hand me a pill so I couldnever wake up! But this morning when I got up I thought that I was very stupid the nightbefore. In my down moments, it is easy to think of a way out but then I am determined tonot let this drag me down as hard as it is. So, yes, Tammy, I have considered suicide attimes. Another thing stopping me is that my mother committed suicide nearly 4 years ago soI am determined NEVER to do it. It only leaves behind a trail of heartache and peopleclose to the person feeling masses of guilt about what they could have done/or did not doto stop it from happening. I miss my Mum so very much as I know that she would have helpedme cope with VVD. You can't relate to anyone else in the world like you can with yourmother and I don't have her to turn to (although I often walk around at night talking toher as she has shown signs that she is there for me). If anyone else has experiencedsomeone close to them suiciding I would like to correspond with you. Like Barbara, I have also experienced people close to me saying that it's not like Ihave a terminal illness so I should cheer up. At first, when they said this I got veryangry but now I try and turn it around as they are trying their best efforts to cheer meup. They don't think of VVD as being that bad as they do not have it so they don't knowwhat it's like! Last week at work, however, their comments rung home to me as I had ameeting with a work colleague who is losing her battle with cancer. I then thought thatyou need to make the best out of your life with whatever happens while you are here. Thereis always someone worse off than you and Barbara (4/22), my heart goes out to you andeveryone else whose partner has left them because of any vulvo/vaginal problem. Barbara, Iknow you said that it wasn't because of this but you made me feel that I have not got muchto complain about as you cope with a mentally handicapped child as well. I don't think mencan handle times of crisis with all the emotions experienced that women can handle so muchbetter unless they can fix it (just like John Gray's "Men are from Mars..."book) so they walk away. My partner feels very frustrated about my condition as he can'tfix it! Good on you DK who posts here regularly for alerting medical personnel of this andother vulvo/vaginal conditions. It's people like you who inspire us to go on fighting.Thinking of you all...take care
CommentI really enjoy reading your entries as you all offer so much support to me and I canrelate to so many of your entries as I have experienced exactly the same thing! Thank you, Lois, (4/20 entry in previous guestbook) for the entry on the upset boss whohad to drive the mercedes instead of the jag! I had a good laugh. Since I have beendiagnosed with VVD, I often contemplate on how trivial my previous problems were (which atthat time I thought were huge!) Obviously, your boss has never had any serious problemsyet in his life! However, it's easy to be harsh when you compare your situation with otherpeople but it's probably unfair as everything is relative to a person's experiences whichin the game of life are very unpredictable. I am sure that most people at some stage intheir lifetimes experience some sort of heartache that is prominent for them. I try anddeal with them the best way I can. Lois, I remember (vaguely now) the days when I enjoyedspontaneous love-making with my partner. Now they are planned to correspond with when I'mfeeling not as bad down there (which isn't often). To Tammy who posted on the 4/21, YOU ARE NOT ALONE. I am amazed that there are so manyof us and we are now onto the twelfth guestbook which is why something must be done aboutit! If it were not for this site where we can share our experiences, I am sure I would besuffering much more stress. When I am down, I do try and think that I am not alone in thisand that we are all there for each other. Although it doesn't always stop me from having adown time (I tell myself that this is normal when you experience illness/ stress). Onlylast night, I thought to myself that I would love someone to hand me a pill so I couldnever wake up! But this morning when I got up I thought that I was very stupid the nightbefore. In my down moments, it is easy to think of a way out but then I am determined tonot let this drag me down as hard as it is. So, yes, Tammy, I have considered suicide attimes. Another thing stopping me is that my mother committed suicide nearly 4 years ago soI am determined NEVER to do it. It only leaves behind a trail of heartache and peopleclose to the person feeling masses of guilt about what they could have done/or did not doto stop it from happening. I miss my Mum so very much as I know that she would have helpedme cope with VVD. You can't relate to anyone else in the world like you can with yourmother and I don't have her to turn to (although I often walk around at night talking toher as she has shown signs that she is there for me). If anyone else has experiencedsomeone close to them suiciding I would like to correspond with you. Like Barbara, I have also experienced people close to me saying that it's not like Ihave a terminal illness so I should cheer up. At first, when they said this I got veryangry but now I try and turn it around as they are trying their best efforts to cheer meup. They don't think of VVD as being that bad as they do not have it so they don't knowwhat it's like! Last week at work, however, their comments rung home to me as I had ameeting with a work colleague who is losing her battle with cancer. I then thought thatyou need to make the best out of your life with whatever happens while you are here. Thereis always someone worse off than you and Barbara (4/22), my heart goes out to you andeveryone else whose partner has left them because of any vulvo/vaginal problem. Barbara, Iknow you said that it wasn't because of this but you made me feel that I have not got muchto complain about as you cope with a mentally handicapped child as well. I don't think mencan handle times of crisis with all the emotions experienced that women can handle so muchbetter unless they can fix it (just like John Gray's "Men are from Mars..."book) so they walk away. My partner feels very frustrated about my condition as he can'tfix it! Good on you DK who posts here regularly for alerting medical personnel of this andother vulvo/vaginal conditions. It's people like you who inspire us to go on fighting.Thinking of you all...take care
CommentLeanne I understand from your post in the 11th guestbook that you are in Australia too.Could you please email me?
CommentToday the show THE VIEW talked about vulvadynia in the Grill the Gyno segment. ThisGyno validated publically the suffering of vulvadynia patients. Yeah!! Though they did notmention any contact numbers or websites for further info. I just sent them an e-mailsuggesting they do so. Others may want to email them too. ABC THE VIEW. As a long termsufferer (10+ years), who had many of the radical treatments done, (Bartholin glandremoval, vestibulectomy, lasered), I am so glad that this debilitating disease is nowbeing publically discussed. It's not in our heads, it's in our bodies and shame on thosemedical practioners who dismissed us.
CommentJC: I was just going to post the same message you did about The View. I am also goingto email them and urge other women to do the same!!!
CommentJC: What is the email address for THE VIEW? I will send them a message ASAP as well. Also, for the above post about hormones relating to VVD, I have recently (in the last 6months) stopped the Pill, and I have had no symptoms other than right before my periodevery month. I have even had sex a few times with minimal discomfort...although I alwaysuse PLENTY of lubrication. As for treatments, I am not sure. Since I seem to be okay forthe most part, I am not using much at this point, and I have not heard of much to helpwith the hormonal component. Other than stopping the Pill. I have a specialty doctor rightnow that suggests using Boric Acid Capsules, filled 2/3 full, right before bedtime.However, if you are really raw, this may burn in the middle of the night. This happened tome only once, though. My doctor says that it helps to balance out the PH in the vagina. Iguess the VVD messes up the balance in that area. But I do not know if this relates to thehormones or not. Hope this helps. It does help me. Lastly, is there anyone from the Los Angeles/Orange County area that posts here? If so,I would really like to talk. Please email me. Also, if anyone else needs a friend, pleasefeel free to email me as well. I could use the support myself!!! Thanks...take care.
CommentHi to all! I caught "THE VIEW" this morning too. I did not catch all theemail address, but it is abc.com/theview I think. Yes, I was so excited to hear this youngDr speaking about the long-term serious pain we suffer. He also stated that there is nocure. He also mentioned the trips we all take to the Dr where in time, they (Drs) hope wejust don't come back cause they can't fix the problem. I almost jumped up and down to hearVVD and VV on TV. Also, if you get to THE VIEW'S web site they said that if anyone hadanyquestions for this Dr (can't remember his name) that you could email him through THEVIEW SITE. I plan email THE VIEW myself tonight, maybe this is the break we have beenwaiting for. All take care and hang in there! There is hope! There has to be! Vernie
CommentI am twenty-six years old and have had vulvodynia since I was nineteen. Although weshare a number of symptoms I don't think we all have the same thing. I saw Dr. Willems inSan Diego and did the estrace treatment. I know women it helped; I wasn't one of them.Ditto for the diet, ditto for the tricyclics. In my case I think the problem is yeast,even though I frequently don't culture for it. My symptoms began with a course ofantibiotics; they always return when I take antibiotics. Two things made me painfree -- Idon't think either alone would have. The first is a long term use of diflucane. The secondwas physical therapy and biofeedback. I did this with a wonderful practitioner inSacramento named Risa MacDonald.
CommentHello! I just went to THE VIEW site, but had problems getting into the "Ask yourGuest" site. Maybe they are just busy. The name of the gyno is Dr Nicholas Tarricone.I'll try later to email. Does anyone know if you have to register befor emailing orcommenting? Anyway, I could not get through to leave a message. It could be me, I'm notreal good at this computer stuff yet.
Commenthttp://www.abc.go.com/theview/show_recap/health/health_0426.html this is the view segment
Commenthttp://abc.go.com/theview/main.html this is the page you use to send the view an email click send email
CommentHi to Trace (above post 4/26)...I sent you an email last Thursday but it obviouslydidn't reach you. I have forwarded it again today and look forward to hearing from you.
CommentHi Leanne. I still haven't received your email. I don't know why as this IS the correctaddress that I'm giving. I guess the Xoom server must be down. Try trianek@hotmail.com - that's one of my alternative addresses. I look forward to hearing from you.
CommentHello I am from Sweden and I just wanted to say that we "vulva ladies" existall over the world. I have and an operation for my vestibulit and I am feeling muchbetter. Keep on fighting, ladies!
CommentI didn't see "The View" but I did link up to the website. Gee, he saysthere's no cure. I want to contribute something on behalf of all of us, but what do I say-- that I've been to a zillion doctors over the past 12 years, been given upteen pills,perscriptions, treatments, and here he says there's no cure! I am absolutely devastatedand angry because I'm positive that most of these doctors we've been going to thinking"he" might be the one whose going to make us better knew there was no cure. I'msorry. It was just upsetting to read what he said.
CommentAccording to the current NVA newsletter Congress has directed the NIH to move forwardon vulvodynia research within the year. Senators Harkin and Specter are to be thanked.
CommentAccording to the current NVA newsletter Congress has directed the NIH to move forwardon vulvodynia research within the year. Senators Harkin and Specter are to be thanked.
CommentAccording to the current NVA newsletter Congress has directed the NIH to move forwardon vulvodynia research within the year. Senators Harkin and Specter are to be thanked.
CommentAccording to the current NVA newsletter Congress has directed the NIH to move forwardon vulvodynia research within the year. Senators Harkin and Specter are to be thanked.
CommentAccording to the current NVA newsletter Congress has directed the NIH to move forwardon vulvodynia research within the year. Senators Harkin and Specter are to be thanked.
CommentAccording to the current NVA newsletter Congress has directed the NIH to move forwardon vulvodynia research within the year. Senators Harkin and Specter are to be thanked.
CommentWow! I guess I don't quite have the mechanics here down. Sorry to bombard the list -- Ionly meant to send once. To Lois: no, there is no cure. But there are lots of treatmentsthat work for lots of people and, with luck, the symptoms can be managed. I went fromdoctor to doctor for six years until I found Dr. Cox at student health in Santa Barbara.He told me that he thinks any number of irritants can trigger the disease, but for mostwomen, particularly most young women, the problem is yeast. I'd not been treated for yeastsince it never showed up in my cultures. But a hefty three month course of diflucan tookmy pain away completely. Whenever I have a flare-up another dose resolves it. I do knowthere are resistant strains of yeast and I've been lucky not to get them so far. Whiletraveling among doctors I met women who were entirely improved on the diet, others onestrace, and my group leader on Elavil, though none of these worked for me. Does anyonehave experience with capsuican?
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CommentHello everyone! I had suffered from Vulvodynia for 5 years due to a misdiagnoses andlaser surgery that damaged my vulvar tissue. I tried topical creams, elavil, difulcan,changing detergents, oxilate diet and physical therapy all which resulted in failure.Ifelt so depressed because I could hardly have intercourse with my husband. Plus it wasn'tsomething I could really dicuss with people because it's not a disease that a lot ofpeople are firmiliar with. Finally last August I had surgery and have been 100% cured eversince. I had a procedure done where I had the damaged, painful vulvar tissue removed andnew tissue grafted from the vaginal wall. I can't remember the technical name of thesurgery so I hope you understand my explaination. This surgery worked for me because theyknew the cause and my pain was only in the area where I had the laser. I never thought Iwould see the day where I would be pain free again but it happened so PLEASE don't give uphope!!!
CommentHello. A year ago I was diagnosed with VV. As all of you know it's a horriblydepressing condition that can lead to all sorts of life problems. I was very lucky to havea mild case--NOTHING like some of you have spoken of. In fact, reading your letters oftenmakes me feel like crying; both for how aweful I feel for you and how lucky you make merealise I am. One of the most depressing things about this disease is that you feel SOalone. Like you're the only person on Earth that could possibly have such a ridiculous anddebilitating condition. And how do you find others to talk to? It's not a lunch-roomconversation topic generally! I felt lost until I found this web site and people to talkto, and share ideas with. And after reading so much about VV I was dis-heartened to noticehow FEW people seemed to be saying they were "cured" or even that they hadimproved significantly. I made a vow that if I ever got better, or God willing, becamecured, I would write and tell you all. Just to give you some hope that there ARE peopleout there who *EXIST* who've gone into remission. (I hesitate to say 'cured'). There IShope. We DO exist. I'm living a virtually normal life now, only a year later. Like Isaid...i was blessed with a mild case, and lucky enough to be diagnosed immediately. Manyof you have sustained damage from misinformed health practitioners which complicates thewhole issue. I was fortunate. It came on suddenly as a result of a bad yeast infection. In fact, like many of you, Ithought it simply WAS a bad yeast infection until I had run the full gamut of yeast cureswith ever increasing pain. I had the wonderful fortune to stumble across a fabulous GYNwho actually diagnosed me correctly after doing cultures for EVERYTHING and findingnothing. (Her name is Ellen Paige and is in Tucson Arizona if that helps anyone outthere.) She handed me an article and started me on topical Estrace cream. I then went tothis and other web-sites and found out much more about this horrible condition. With myGYN's help and advice I took control of my own treatment and started a course of calciumcitrate, st.johns wort, and n-acetyl glucosimine as well as the estrace cream combinedwith just a little hydrocotrizone. She said to use the Estrace cream sparingly but put iteverywhere I felt pain, including internal to the vagina if I felt pain there. I did thisin the morning and before bed at night. If the pain was especially bad I mixed just alittle hydrocortizone with the Estrace. While many doctors warn against usinghydrocotrizone as it can thin the sensitive skin, my doctor told me that using aNON-prescription strength *very sparingly* could alleviate the swelling and would notcause thinning of the membranes. I am taking about 600-800 mg of Citracal just beforelunch (ON an EMPTY STOMACH), and 600-900 mg of st.johns wort (on a FULL stomach), and600mg of n-acetyl glucosimine (NAG) per day. The citracal supposedly helps with dispersingthe oxcylates in our chemistry (and works much faster on an empty stomach. I found it canalleviate severe burning in about 15 minutes!) The st.johns wort increases the body'stolerance for pain, and has that added "side effect" of being one of nature's"happy drugs" which helps with attitude (and attitude has a LOT to do withhealing). The NAG helps repair smooth muscles, membranes, and connective tissue, and VV isessentially a connective tissue disorder. This condition is definitely (in my opinion) related to hormone levels. I was improvingslightly with the above treatment but becoming depressed with the slowness of it all untilI began to correlate my pain to my menstrual cycle. I seemed to have much more pain justbefore and during my period. So I stopped taking the birth control pills I'd been on forTEN years. Two months after stopping the birth control pills (and continuing my treatment)good things started happening. The daily pain became bearable, sitting was no problem aslong as i got up to walk around every once in a while at work. (And not wearing underwearhelped a lot also). As time progressed and I continued the treatment there were wholestretches of the day that I had no pain at all. Things just kept getting better andbetter. Intercourse was not an option until a few months ago, and then it waspainful...but bearable. Eventually, slowly, as long as we didn't do it very often, itbecame enjoyable again. It's taken this full year, but my symptoms now are barelynoticeable. I've weaned myself off the NAG and i can even go without the calcium citrateand st.john's wort for several days. The Estrace I now use only once per day and if I skipa day there are no ill effects. I've had no side effects from this course of treatment.Now I notice there is about a day of annoying pain when I ovulate, and there is somediscomfort just before and during my period, but it's NOTHING like it used to be. Duringthose times I use a bit more Estrace mixed with a bit of hydrocortizone to reduce theswelling. It has not affected my period or caused other side effects as of yet. I alsofind that if the pain is annoying enough to keep me awake at night, about 400mg ofibuprophen takes the edge off enough so I can get to sleep. I did much experimenting with different diets and foods and found no correlationbetween pain and food. I know a lot of people find certain "trigger foods" thatcause them problems, but with careful eliminating and reintroducing of food (and keepingnotes) I haven't been able to find correlations for me. My current theory is that thiscondition is mainly hormone driven (again...for my body this seems to be the case, all ourbodies are different), and my long use of birth control pills threw my body's naturalbalance off, causing long term damage. I expect to need to use the Estrace cream andvitamine/herbal supplements on at least a maintenance level for the rest of my life, andi'm afraid of what will happen if I ever decide to get pregnant (with all the hormonechanges that includes), but I'm grateful that at least for now my life has settled down toa more "normal" level. I hope you all are as fortunate in the future and if anyone wants to discussideas/treatments etc. please feel free to email me at christen@noao.edu. Support hugs, and best wishes to all of you. Keep optimistic and hopeful (as best youcan). It IS possible to live a normal life again. Don't give up!!! Jenna
CommentLily: Glad to see a fellow GAUCHO on this guestbook!!! I also saw Dr. Cox at UCSBstudent health center. He is one of the greatest specialty doctors around. Unfortunately,you have to be a student there to see him. There was word in 1995 that he was tempted togo into private practice. Although I know he is reaching the ideal population there at theuniversity, a small part of me wishes he could go into private practice. I would make thetrip from Orange County to see him...he is THAT GOOD!!!!! He has many great qualities mostwomen with this disease need...but the greatest gift he can give is knowledge. That issoooo important in anything, but especially with this condition!!! The fact that he isactive in research is AWESOME!!!! I truly believe now, after such an experience with him,that I need to stay connected with doctors that are affiliated with a university-basedresearch team. Currently, I am seeing Dr. Ostergard in Long Beach, CA. He is affiliatedwith UC Irvine. In fact, Dr. Cox is the one that referred me to him!!! Anyway, I agree with what you said about the irritants and yeast thing. It may or maynot show up on the slide or under the microscope, but it usually is a contributing factorto this disease. Almost anything can set it off. Did he ever put you on Gel Caps filled2/3 full with Boric Acid Powder? Curious to know if he did, and if it worked for you. Iwould like to talk to you via email...can you email me at the above address?? That wouldbe great. Thanks. Sheri
CommentAlthough I don't know anything about Vulvodynia, I do know that I lived with a tamponinside my body for the last ten years. Two months ago I started bleeding after my period.I asked the doctor to find out why. During the Pelvic examination he discovered a tamponlodged up behind the neck of my uterus in a fold of skin (making it nearly impossible tosee). He said he could tell it had been there quite awhile. Many of the symptoms you womanare describing is what I experienced long term in varying serverity and duration. I didnot develop "Toxic Shock" and die although the tampon did perforate the vaginallining and probably would have had major complications in the next 30 days. The majorsymptoms were mental confusion, anxiety and panic attacks.. I also experienced extremefatigue and lower body weakness. My whole gastrointestinal system was affected with dailynausea and I had major spasms and contractions every where in my pelvic area and could notdistinquish the origin. I developed chronic constipation (not diarrehea) and nevervomited. Please take this in consideration if you have not already done so and find adoctor who will do a very thorough examination. I hope I can save a life or two or atleast save someone from chronic misery.
CommentDear Trace...I have forwarded my email to your alternative address.
CommentI am 23 yrs. old. I had a baby three years ago. I have been suffering from painful sexfor about 4 yrs now. I have had the same partner for 6 yrs. We both have been faithful the6 yrs we've been together. I am not sure if is suffer from VVD or any of the others listedby many of you, however for the first time in 4 yrs I am not alone! I I have been to mygyne(currently looking for new one. Any suggestions in Chicago?) Anyhow, when I firstaddressed this to my Dr. she said 1. It's because I just had a baby 2. I don't use enoughlubrication(believe me I have had to change the sheets afterwards) 3. The best on is" It's psychological!" For a while there,I thought so myself. Now I know thatit's far more than that. I also have an extremely low sex drive. It was'nt always thatway(from what I can remember.) My boyfriend has been pretty supportive, but this has takena huge turn for the worst in our relationship. I have had many recurant yeast infections,I feel the burning and "tearing" during and afterwards. When I pee after andthen on for a day or two, I have to blot dry. I have spurts of itching on pubic area,inside and around the opening of my vagina. I would love to talk to anyone as I am new tothis. I plan on finding and talking with a new Dr. I will definitely tell her about this.I need help. My relationship is suffering big time. I don't feel lkie a good partner andlike I am weird. Anyone can feel free to e-mail me. I encourage anything. Thank you allfor being there. This is a great site and I wish you all optimism! :) :) AngieAngie613@hotmail.com
CommentHad my follow up visit with doctor "vulvur specialist". Unfortnately, in factI could tell he was also disappointed that the cortisone cream did not improve this spot(size of a pin drop). He prescribed Estrace -- and we will see. BUT -- this pain was sointense he couldn't even touch the area. He put a cream to numb the area and waited about15 minutes and when he came back he was able to examine me. I felt nothing. The cream,which he gave me a prescription for, is EMLA. Let me tell you. I had several hours where Idid'nt feel anything and it was heaven. The Lidocaine he game helped some but this stuffis incredible. It's Lidocaine + Prilocaine. Well, I'll try the Estrace, the Premarin and adifferent antidepressant "Desipramine' which treats depression, compulsive orders and"bed wetting??? I'm sure I fit somewhere in there. Just wanted to tell you aboutEMLA.
CommentFor those of you that read the entries on this site and feel "there is nohope" - just wanted to tell you it isn't so. For about six months I have beenfollowing this site as well as others, including the one for Sweden wich is where I live(I've seen some other swedish girls are posting here too). And I have to say: there are somany women getting better! Even some that have been ill for ten or fifteen years or more!I know that some of you (my heart goes out to you) have gone through virtually all of thetreatments with little relief, but for the most part I think finally most women findsomething that helps them! Whether it is accupunture, estrace, homeopathy, long-term yeasttreatment, the diet, treatment for dermatologic problems, antidepressants, CORRECTLY ANDEXPERTLY PERFORMED surgery or biofeedback (wich seems to be helping so many)... finallymany many women find out what is their cure. This condition is not hopeless! The key seems to be to find the right doctor, or find asupport group or support site that can offer suggestions for treatments that might help.As for the site in Sweden, is has existed for about a year and during this time many ofthose who have been writing in has gotten much better due to suggestions from othersufferers, several have been cured. It is wonderful to follow their progress. For myself,I have had some minor problems that seems to have diminshed considerably thanks to thisand other sites. I am 95% and getting better! Organization and putting pressure on politicians and institutions for funding research,as well as working for a bigger awareness of this problem and informing sufferers thatthere are infact treatments out there will surely help even more women in the years tocome. Everyone on this site should be proud that by sharing what they know and working forchange they DO make a big difference.
CommentFor those of you that read the entries on this site and feel "there is nohope" - just wanted to tell you it isn't so. For about six months I have beenfollowing this site as well as others, including the one for Sweden wich is where I live(I've seen some other swedish girls are posting here too). And I have to say: there are somany women getting better! Even some that have been ill for ten or fifteen years or more!I know that some of you (my heart goes out to you) have gone through virtually all of thetreatments with little relief, but for the most part I think finally most women findsomething that helps them! Whether it is accupunture, estrace, homeopathy, long-term yeasttreatment, the diet, treatment for dermatologic problems, antidepressants, CORRECTLY ANDEXPERTLY PERFORMED surgery or biofeedback (wich seems to be helping so many)... finallymany many women find out what is their cure. This condition is not hopeless! The key seems to be to find the right doctor, or find asupport group or support site that can offer suggestions for treatments that might help.As for the site in Sweden, is has existed for about a year and during this time many ofthose who have been writing in has gotten much better due to suggestions from othersufferers, several have been cured. It is wonderful to follow their progress. For myself,I have had some minor problems that seems to have diminshed considerably thanks to thisand other sites. I am 95% and getting better! Organization and putting pressure on politicians and institutions for funding research,as well as working for a bigger awareness of this problem and informing sufferers thatthere are infact treatments out there will surely help even more women in the years tocome. Everyone on this site should be proud that by sharing what they know and working forchange they DO make a big difference.
CommentI haven't written for a few months, but I have great news to share,I hope it will atleast help one other person from this terrible problem. I have suffered with vestibulitisfor at least 10 years, not knowing about the condition. My doctor wanted to send me to asex therapist to deal with the problem that she thought was mental. After seeking anotheropinion about my endometriosis, I happened to mention that I had painful intercourse, andwondered what else I could try, and that is when I was finally diagnosed. After about 6months of trying Diflucan and estrace, and cortizone. I finally decided to try going offthe pill which I have been on for about 10 years for treatment of the endometriosis. Within 2 or 3 weeks I began having relief, that was in november and for the last few months Ihave had virtually pain free intercourse for the first time in many years! I am sothrilled (and so is my very patient husband!) to not be suffering anymore I am sure it isnot the ultimate cure, but maybe one of you out there has a similar situation. My doctorsaid it seems to be different for everyone. One other thing I mentioned before when I lastwrote, my doctor mentioned that I should stay away from ALWAYS brand pads (since I realizea lot of women cannot use tampons with this condition) they have a lot of chemicals inthem that aren't particular good for you skin. I have actually noticed a big differencesince discontinuing use of this brand. I really have to wonder if they could have actuallybeen the cause of vestibulitis for me, It is hard to say if it was and irritant to theproblem, or the cause. I stopped the pill and the use of ALWAYS at the same time, so it ishard to tell which it was. Any one else had this experience? Someone else wrote theythought I may be on to something. I really may be worth looking into, if enough of us turnout to have been using the product..I am just testing the waters on this, I know we wouldall love to know what is causing this. Good luck to all!! Kelli
CommentSherri, My doctor has prescribes boric acid, except it was special made as asuppository. I think to some extent, its helping. I also bought a cream at the storecalled Vaginex. Although I don't have iching, it has helped with my pain. Also last week Iwent to see a urology specialist, in hope that he could pin point exactly what was wrongwith me. The word vulvodynia is a vague way of saying " yes you have vaginapain" Like we didn't know that already. He did a urine specimen, which is common inhis field. I wasn't expecting him to come back and tell me that I had a big time bladderinfection. I ended up with a shot in the butt, and 3 weeks of antibotics. What puzzled thedoctor was I didn't feel that I had a bladder infection. I didn't have the burning when Iurinated. I did however started having incontienice, and urgency. I would feel like Ididn't need to go to the bathroom, then within seconds, it hits without warning and Icould never make it to the bathroom. I am still in pain with the V V, and will be testedfor IC in two weeks. My pain is not as bad as it was prior to antiboitics. My doctor askedwhat type of lubrication I used and I told him KY jel. He told me that it is the worstpossible lubricant that a woman can use, and that it should be taken off the market. Hetold me to use just regular cooking oil. I haven't has sex in a long time and I decided totry the oil. I was surprised that I was able to let my husband penatrate, BUT, I couldn'thave an orgasm. I would come so close and then the feeling stops short of an orgasm. Thiswas frustrating and I never had problems with orgasms before, I am use to multi orgasms.Did you feel a difference using boric acid? The Vaginex does help soothe and promoteshealing of the skin. My doctor said that I must be in bad pain to not know I had a bladderinfection. I had several infections going on in my bladder. I must of had this infectionfor a long time. I would recommend that all you women make sure you get a urine speimen,when you see your doctors. When you are suffering pain from vulvodynia, you won't feel thebladder infection, it only adds to the pain. This was a reality check for me, and none ofthe doctors I've seen prior to him even did a urine test. My pain is less now, butuncomfortable, and constant. I still have a long way to go, before finding what will workfor me. You are the second person I have heard that was given boric acid. I really do feelmy best when I first wakeup in the morning, due to the boric acid I insert at bedtime. Ithink it does have something to do with your ph balance. I don't think it puts it back tonormal, I think that it shocks the ph that is unbalanced, making your body work harder torebuild a healthy p h balance. Who would of thought that you would put boric acid in yourvagina? Its nice to know that I am not the only person that boric acid is being prescribedfor this. Take care. Terry
Commentjust was wondering what happened to ALLY/Sue???? haven't seen her/them post a messagein a while...geeeeeee-hope she/they are ok!!!!
CommentIn respone to Kellie's post on 4/28 - did your doctor reccommend a different type ofpad to use? I can use tampons most of the time but I also have been using ALWAYS pads.Have you tried another brand that hasn't caused irritation?
CommentMy daughter, too, was a patient of the wonderful Dr. Thomas Cox in Santa Barbara. Underhis care she ended a three and half year nightmare, becoming painfree for the past threeyears. She used the 2 week regime of boric acid suppositories, but got no relief from themI still think they're worth trying if yeast is an issue for you. I've read reports ofwomen for whom they've been the answer and Dr. Sobel published a study in 1997 suggestingthat they may be more effective against the t glabrata strain than topical or oral azoles.My daughter improved on diflucan and biofeedback. I want to mention that she'd triedbiofeedback for a year or more without result, so we had it on our done that list, but itturned out she hadn't ever done it properly. When she changed physical therapists theimprovement was dramatic. She also responded to massage and ultrasound. Unfortunately sherelapsed this Christmas after treatment for a persistant UTI and is no longer getting therelief we'd come to count on from diflucan. So we are back at the beginning again.
CommentHello, I have posted to this site a few times and read it almost every day. I have beenliving with Vestibulitus for about 2 years now and have been on many different treatmentswith no luck. When I was first diagnosed with it I was put on 25mg of Elavil and Steroidcream. I became painfree for a couple of months but after trying to work out the pain hasreturned and has not gone away since. I am starting to lose hope and am becoming verydepressed. I have also thought about suicide during those really rought nights. Last nightwas a bad night. Couldn't walk and the pain was extremely horrific. My fiance has beenabsolutely wonderful during all of this. He tells me that it is "Our" problemand that he would never leave me. He is a godsend to me. Without him I know this would bea lot more difficult to accept. Still, I feel like a horrible lover and I feel terriblethat he has to suffer through this as well. My wedding isn't until next year in June and Ipray to God every day that I will be able to get control over this by then. After readingthrough the guestbooks, I am starting to think that it may be worth quitting my birthcontrol pills. I have noticed many women feeling better after going off of them. Can anyof you that have had this experience tell me what brand of the pill you were on? I amcurrently on Estrostep Fe. I started taking this around 2 years ago because I am ironanemic and was losing large amounts of iron through my periods each month. Since then myanemia has gotten better but now that I look back, it seems as though this may havestarted around the same time I started on the pill. I am also interested in tryingacupuncture or some type of massage therepy that was mentioned earlier on. I currentlylive in Michigan and have no idea where to find reputable acupuncturists or otherspecialists. Does anyone know of any good specialists here? To Karen (above), I noticedyou mentioned Dr. Sobel. Is this the same Dr. Sobel who works out of a clinic in DetroitMI? I am currently seeing him and have heard nothing about him. He currently has taken meoff of everything except the Elavil for 6 weeks. I am still in pain. I go back to see himin a few weeks and plan on mentioning going off of the pill. I'll let you know if there isany improvement. If anyone needs to talk or just wants some support, feel free to email meat the address above. It helps me immensely to talk with others who know what I am goingthrough. I am praying for you all and hope one day that we will all be cured. Hang inthere.
CommentI STARTED WITH THIS PAIN AFTER I WAS DIAGNOSED WITH A VERY PAINFUL RECTAL FISSURE AND ISTRAINED TO HAVE A BM. NOW I HAVE BURNING PAIN AND DISCOMFORT EVERY SINCE FOR 2 MONTHS. IAM SURE IT IS A MUSCLE CONNECTING THE TWO AREAS. WHAT CAN WE DO FOR IT?
CommentI STARTED WITH THIS PAIN AFTER I WAS DIAGNOSED WITH A VERY PAINFUL RECTAL FISSURE AND ISTRAINED TO HAVE A BM. NOW I HAVE BURNING PAIN AND DISCOMFORT EVERY SINCE FOR 2 MONTHS. IAM SURE IT IS A MUSCLE CONNECTING THE TWO AREAS. WHAT CAN WE DO FOR IT?
CommentI STARTED WITH THIS PAIN AFTER I WAS DIAGNOSED WITH A VERY PAINFUL RECTAL FISSURE AND ISTRAINED TO HAVE A BM. NOW I HAVE BURNING PAIN AND DISCOMFORT EVERY SINCE FOR 2 MONTHS. IAM SURE IT IS A MUSCLE CONNECTING THE TWO AREAS. WHAT CAN WE DO FOR IT?
CommentHave anti depressants worked for anyone? I have heard that they can make you put on alot of weight and after that it's almost impossible to lose it. But I've also heard thatwhen they're prescribed for pain relief they're in a much lower dosage and with fewer sideeffects. Is this correct?
CommentI haven't written in the guestbook in a while, but I do read the new entries on a dailybasis. Someone asked about the side effects of the tri-cyclic antidepressants. I amcurrently taking Elavil and have been for about a year and a half. My pain is pretty muchunder control now, so I am slowly having the dosage lowered and I hope to be able to stoptaking it in the next few months. Supposedly, it can repair damage if taken for anextended period of time, and so it may not need to be taken forever. I am a thin person,but when I first started taking the Elavil, I gained 10 pounds in three months. Thatconcerned me a little. I didn't mind the ten pounds, but I was afraid that I wouldcontinue to gain it at that rate. However, in my case, I stopped gaining weight at the 10lbs. so it did not become a problem. I don't know if that info. will help anyone, but atleast there is a chance that weight gain will not be a permanent problem for everyone onthe medication. I have not been taking the pill, because for about two years my husbandand I couldn't have sex anyway. But for the past year or so, my pain is much better. Now Iwish that we didn't have to use condoms because they seem to irritate me. I have heard somany conflicting things about the pill and vulvodynia that I am scared to start taking itagain. Does anyone have any info. for me about whether or not it had a bad effect on them?Most women seem to say that it made them worse. Is there anyone out there who didn'tbecome worse? Also, how about the depo- provera shots? My doctor suggested that they mightbe a good alternative to the pill. Has anyone become worse after the shot? Someone alsoasked about massage therapy. My husband is currently attending the second best school ofmassage therapy in the U.S. He is looking into how massage may help vulvodynia. As soon ashe finds out anything, I will post the info. here. I wish everyone the best and hope thatsomeone can find a cure for this horrible disorder v-e-r-y soon.
CommentFor those of you looking for an alternative pad to ALWAYS. I switched to a bladdercontrol pad called POISE, it seems to hold the moisture away better for me than theregular sanitary napkins. I have also tried GLADRAGS which is a cotton flannel pad. It isvery comfortable, however you have to wash them yourself, which I find disgusting and alsoI have had some accidents (bleed through) kinds of experiences with them. Thank you to all of you who mentioned weight gain from Elavil. I have been on Paxil andnot noticed a weight gain. However, I have just started on Elavil too for pain managementand the doctor never mentioned weight gain. I have put on about 6 pounds inexplicably andthought I was going crazy. I am a former anorexic/bulimic and putting on weight isterrible for me. I really appreciate the mention. I will have to work on anotheralternative. Also, I think that I have found that Diet Coke flares my condition. I don't drink itoften, but I have noticed this in the last few weeks. Anyone else notice that? Thanks again.
CommentI have suffered with vaginal pain for most of my life. I have tried many thingsincluding a change of diet. I now live in Denver, Co. and am looking for a gyn who canadminister the Glazer Protocol. Please advise. Patricia Stewart
CommentLois: I just read your entry in the guestbook and wass wondering how to administer EMLA. Italked my doctor into giving it to me, but he had never heard of it. DO you just rub itinside the vagina or what? And then do you remove it soon. I need an answer by tomorrow ifyou can possible e mail me or write it into the guestbook. I am desperate with the pain.
CommentDolores, In case you're checking here. I'm emailing you right now.
CommentHello everyone, I haven't contributed to this guestbook for a couple of years now, butI thought I would drop a line in now. I have had vulvodynia for 4 years now. It startedwhen I was 18 and 2 weeks after I went on the birth control pill. Two weeks after the pillI started itching, burning, etc. I eventually went off the pill, but did not improve. Thepain started in and eventually it became 24/7 pain. I have tried almost everything outthere from anti-fungals, anti-dep, anti-inflammatories, etc..including the surgery. Thesurgery was the worse mistake of my life. I am so much worse now. My doctor said I wouldbe 75% better at least...Wrong!! I am 75% worse now. I have these scars inside me thatburn and ache all the time on top of my vulvodynia pain that never went away. They arelike little pits inside me. I am so scared and depressed now. I am only 22 and am engagedto be married next year. I like Heather that posted earlier pray everyday that I will bebetter by my wedding. I don't know what to do anymore. I have seen about 25 doctors. Mostof them have no idea how to even say vulvodynia. Does anyone know of any doctors in KansasCity or around here that might be able to help me? Or any doctor that could doreconstructive surgery...I would be willing to travel if a dr could get these scarsbetter. I am a mess. The doctor that operated on me sewed my uretha to my vaginal wall.Well I guess it could have grown back there..can't prove she did it. She shouldn't havebeen cutting up there anyway...Well I am sorry for rambling. If anyone has any ideasplease feel free to email me. I would really appreciate it.
CommentI need HELP. I have suffered with vulvadynia for 3 years and have taken elivil,neurontin, effexor, not to menetion a few others. I am sticking with the Low Oxalate Diet,but I still have pain almost every day. My problem is not with painful intercourse. I donot have a discharge or infection. My pain in the form of burning is in the labia.Sometimes it moves to the rectal area or just around the vaginal opening. I need someonewho has these symptoms to please give me some advice. I have read many stories and myheart goes out to every one of you ladies. Mine seems to be a mild case compared toothers, but believe me, I am in pain all the time. I love to walk for exercise, but itseems to make the buring worse. I can feel perfectly alright one moment and then theburning will start. IS THIS NORMAL FOR VULVADYNIA?? I have had my urine tested foroxalates and have tried the calcium thing, but it never really helped. I do stay on theLow Ox Diet, but whether I eat the right things or not, it seems I still have this burningsensation. If anyone out there can relate to these symptoms, please write back on the Guestbook. Iam hesitant to give out my E-mail address right now, but I am desperate for some advice.Thank you in advance for your help.
CommentTo "viewer," Unless you are in third grade, there is really no excuse forsuch an immature and disparaging message. Just to recap and, I hope, finish this wholeugly name calling thing, we had a woman who gave some advice, a woman who disagreed withthat advice, and the whole thing spinning out of control. I was watching Ally MacBeal andreading this page and I thought the whole thing was funny so I made up the name Ally andhoped my two cents would make everyone relax and see how silly it was to be fighting overB vitamins. I have no idea who Sue is, no idea who Gayle is, and no idea why you as athird party find it necessary to revisit this topic. Will you please let it die or willyou be tempted to have yet another last word?
CommentI have been suffering with VVS for about 2 years now - since my husband and I gotmarried. We have never been able to have sex yet we were longing to have children.Considering the fact that I could be wrestling with this medical concern for a while (likeyears), we tried our own "science experiment" and injected semen into my vaginaon the day I was ovulating. I never, in a million years, though it would work but on oursecond wedding anniversary I took a pregnancy test and discovered I was pregnant. Althoughwe have yet to have intercourse we have a very intimate and satisfying sex life. We willcontinue to look for answers, ask questions and search for results but we thought we'dlike to get our life on the road while we were at it I'm not getting any younger. Hasanyone with VVS delivered vaginally? Did it make your condition worse?
CommentHi! I have lichen schlerosis. I have read several of the guest pages and empathize withall of you. No one,,,,I repeat no one derserves this kind of pain and torment. My"pain" seems to come and go in cycles. The older I get the more severe thepain,,,sorry to say. I am also bi/polar, I take lithium everday and I refuse to takeanti-depressants any- more. It is not worth the side effects. I did try testosteronecream....burnt like hell....My herbologist hase me on two different viral elixers, and itseems to work....If I don't wait too long to start taking it, after a breakout it worksbetter. The elixers are put under the tongue, and that goes straight into the system. Formore info,,,,please contact me I have been ashamed to say anything about this afflictionbefore now....Try to keep the faith, and keep your mind occupied. My worst fear during abreakout in knowing that I will have to go to the bathroom. I have overcome a lot ofadversity in my life...I take my meds,,get good sleep, and try to eat right and drink lotsof water, (that dilutes the urine, and doesn't burn as much... God Bless our significantothers.... There is some reason for this pain, I just hope that we can all overcome thisterrible this trauma, and have inner PEACE. Thanks for this place to vent...
CommentI have a friend that was recently diagnosed with Vulvadynia. As a child, she was acompetitive gymnist until she grew and could not retain the small frame that gymnists musthave. Since it might have to do with muscle structure and function, do you know if thereis a high incidence of Vulvodynia with gymnists or other athletes on stringent excerciseregimens?
CommentHave found your page interesting and made a copy to show my doctor. It just blows meaway how few doctors do not even recognize the WORD..VUL.!!! Must say on your survey YOUDO NOT APPROACH AT ALL THE age of us past menopause. You ask many questions of those stillhaving their M. cycles. nothing of those past menopause. THIS IS SO TRUE OF MOST DR. theyhave no knowledge of women in that age bracket. AND I MUST SAY SEX IS STILL WONDERFULLTHEN TOO.I could find no help locally after visiting 5 dr. here in Ohio, so I lived in ourMotor Home in Colorado for 5 months so that I might visit a dr. in Denver. I found low ox.diet helped me the most. JEEZ why don't dr. find out about this painfull problem!!!!thank-you for the wonderfull web page, for a time I wondered if I were the only one withthis problem. The first 2 dr. I went to told me I had vag. herpes, all test showed thisnot to be true!!!!! if I had not had such a wonderfull marraige this could have caused adivorce. WHEW>>>>WHAT DUMB DR. CAN PUT YOU THRU>>IT IS SHAMEFULL TO THEPROFESSION!!! thanks again marty
CommentTo Sam: I haven't heard this theory before, but my daughter, too, is a vvs sufferer whoused to be a competitive gymnast.
CommentLadies...I suffered from what my MD said was VDyn for 2 1/2 years. Given the history ofthe onset of my condition, and after long research, I refused to believe that I had acondition that has an unknown cause and unknown cure. I also refused to accept my MDsaying..."I just don't find anything wrong...you have VDyn...sorry about yourluck." Even though I am a medical professional, I sought out an "alternativemedicine" option. After describing my symptoms and the history of their onset to a reputable naturopath,he nodded and smiled and said, "You have the symptoms of a systemic yeastinfection." I had mentioned systemic yeast to my MD at the beginning of all of thisand she told me that I would be alot sicker if I had systemic candidiasis, so we did notpursue it at that time even though I have white patches of skin on my face that have beendiagnosed as a yeast infection. My naturopath took a blood sample and sent it to a naturopathic lab to do a test that"has not been cleared by the US FDA." The test was created by a naturopathic laband identifies "Candida Immune Complexes." I don't clearly understand it, butthe lab report does say that elevated results, along with clinical symptoms, indicates acandida (yeast) overload. My naturopath tells me that a candida overload will result inburning of mucosal tissues of the vagina. My VDyn started right after I had a severe (and my first ever) vaginal yeast infection,and I have had recurrent yeast infections ever since, as well as an increase in the whitepatches on my face. Dr. J started me on a 21 day treatment of Nystatin, and some other naturopathictreatments. I have just started the treatment, this is day 2...but I would urge all of youto find a reputable naturopath and question his/her knowledge about VDyn and systemiccandidias and treatments. If nothing else, the naturopath has given me HOPE and encouragement that there is moreto this than "I don't find anything, there is no cure, sorry about your luck." Ilive in the Corvallis, Oregon area and will glady refer you to my naturopath if you areclose by. Good luck, ladies...there is HOPE. Judy
CommentAnyone ever use Ultram for the pain associated with vulvadynia? Can you take Ultram andAntidepressants also? Just starting this regimen. Please respond if you take Ultram.
CommentMary, I too suffer from the on and off again type symptoms that you describe above. Ican feel good one minute and the next minute be in so much pain that I can't walk. Justthe other day I was feeling really good and decided to go see a movie. 20 minutes into themovie I was in excruciating pain. I'm not sure if this had any effect but right before themovie I took an Excedrin for a headache I had. Later on I was reading the ingredients andfound that there was caffine in them. I used to drink pop all of the time, but now I stayaway from it. I am also currently on birth control pills. I am wondering if this has anyeffect on me as well. I go to see my doctor in a few weeks and plan on asking him althoughI am starting to lose faith in doctors. It really is starting to seem that they have noidea what to do for us.
CommentI have just started on 10mg of Amitriptyline per day. Can you still take othermedicines with it? I mean things like pain-killers (Act 3 or Panadol) or evening primroseoil? I'm not sure.
CommentHI there fellow sufferers!! Can someone please tell exactly what "the Diet"is?? I have had this for 5+ years and just been diagnosed this December, just got married,etc, you know, such a sob story. My mother in law told me she just met a person with thisand the diet plus diflucan once a week has worked for her. I really want this to go away,just like the rest of you. My doctor wants me to have cortisone injections, which I reallydon't want, so PLEASE someone tell me EXACTLY what this DIET is. And I do pray everynightfor God to cure me, and now that I know all of you are out there, I will also pray foryou! Who ever knows of this diet email me at the above address THANK YOU SO MUCH!! I doNOT want a shot in my vagina!! ~Tammi
CommentTammi, check out www.branwen.com/rowan. You'll find info about the low-oxalate diet onthat site. Sue
CommentThanks SUE. I checked out that web page, and I am going to try this diet, and also haveanother chat with my OBGYN about weekly diflucan. Again, thanks for your quick response!~Tammi
CommentTammi, good luck with the diet. Hope you find relief quickly. Sue
CommentHello! I am new here to this website, but not new to Vulvadynia. I have been sufferingfor over 13 years, but have had it my whole life. I have suffered every pain from itching(liek right now) to severe burning, to barely able to sit. My husband and I went our firsttwo years of marriage with NO sexual relations. I had a vulvectomy in 1996, and have beenbetter, but nothing like I was 6 years ago. I am fortunate that I have been able to have abeautiful girl (now 2 1/2) and another due in 5 weeks. Sex is a thing of the past now - weonly did it once a month to try to conceive. My biggest problem is that I am pregnant andunable to take most medications. The only thing I can use is Estrace, which seems to donothing for the constant itching and burning. Drives me nuts!! The Low Oxalate diet iswonderful - you all should try it - but it's really hard for me with all these pregnancycravings. I just wanted to meet some other women who understood what I am going through. No oneelse does. Please check out the Vulvar Pain Foundation. I have gotten a great amount ofinformation from them. Juls
CommentJust let me tell you how cool, or should I say comforting it is to know that there areothers out there like me. I can't tell you for how long I have been ashamed and felt"dirty" for doctors always telling me I have nothing wrong with me, but I wasfeeling this way. Not to mention they said I was "nuts". But now it is a thingof the past since I know what is my ailment. So, if anyone knows of anything besides thediet and creams, let me and everyone else know! Thanks to everyone for being here, I thinkit helps us all to know that there is someone else who actually knows how we feel, I willcheck here daily if you just need to vent. ~Tammi
CommentI was diagnosed with vulvodynia in 1997 at age 22. Although it took about a year (andalmost robbed me of my sanity) to be diagnosed. I also, saw many doctors and specialistswho could only tell me "maybe you need some help..., psychologically". Icouldn't believe how degraded I felt. I knew that the burning, itching, and swelling wasnot in my mind ( I couldn't even think about having intercourse). However, I started tothink, maybe I am crazy (afterall, I couldn't see any symptoms). I demanded and took everySTD test in the book (countless times), continually jumped from doctor to doctor, and metwith tons of doctors who couldn't find anything wrong with me. Oh, and of course theythrew me on Prozac because they thought I was depressed (well, I was but because no onecould help me). Finally, I recieved the diagnosis of vulvodynia. At least now I knew Ididn't have an STD, mental health disorder, or anything to be ashamed about. I justcouldn't believe that no one could help me or the ignorance of the medical community. Idon't know what definitely caused my symptoms to occur, but as a teenager I also hadrecurring "yeast infections" and irritations but they never lasted for years.The only thing that I can contribute to causing my vulvodynia was the Lower GI test that Ihad performed on me a month before this all started. At 25, I still struggle withvulvodynia daily (as does my fiance). I am lucky that he was/is supportive of me. Afterthe many unsuccessful treatments, crying spells, and diets, I have found that my symptomsget terrible if I eat anything mixed with soy, or soy bi-product (especially before myperiod). I have been soy free for about half a year and my symptoms have become almostnon-exsistant. I am not a doctor but hey try it, it may work for you. Also, have younoticed that soy is used in almost everything nowadays? Isn't that funny, considering thatvulvodynia is a relatively new disorder.
CommentHi, just joined the list. I"m 38, two kids(High risk pregancies, preterm labour,early deliveries) I've only had the pain for a few months, and already I've felt like I'vetried so many things with very little results. I have cried tears for us all, andespecially those of you whose pain is worse than mine. My history: Many vaginal and yeastinfections, Cervical LEEP in March 1999, bleeding complications from that, pelvic painconstantly since then, and vulvar pain beginning with the new year 2000. I had alreadytried the antidepressants for chronic pain last summer, even before my VV started for thepelvic pain with terrible results. I did the opposite of the expected side effects. I quitsleeping and lost a great deal of weight. I'm guessing its a yeast sensitivity, but dietand a 3 dose dulfican for 3 months try didn't work. I'm going herbal, and have an apptsoon with an acupuncturist. My VV doesn't seem to be muscular. The skin, looking normaljust burns and stings ALL the time. Careful with the xylocaine, I peeled skin just like abad sunburn trying that. I have a tube of Emla, works, but only for a couple hours, so Ichoose now when to be relatively norrnal for a short time.Just today I have a bottle ofboric acid suppositories from my gyn to try. I have only heard once a day, my script says2 times a day for 2 weeks. Does anyone know what a normal ph of a vagina is and how onecan check it? I also had my gyn try a candida blood test, not for antibodies, but fortiters. Anyone heard of that? My best to you all out ther, and hope more of us can say weare pain-free soon. C
CommentHi, I have been suffering with VV since 1994 when I had a partial hysterctomy. I hadacid put on the vulva 3 times, had three laser surg. with Dr. Baggish, and after my set ofthree surg. with Baggish I was unable to even think about making love for years! Thecondition was so much worse with each surgery. Why I ever went threw with the third I willnever know. I wanted to die many times over. I lived on pain killers for a year afterBaggish. We all know that there are diffrent causes for this condition and perhaps forsome one else his Surgery may have worked. After years of being tourtured I joined TheVulvar Pain foundation and started an non evasive methods ONLY. I will not let a doctoruse me as a guinea pig again! I did manage to get to a point of almost being pain freeafter 3 years of a low oxalate diet, calcium citrate, Nag. and taking low dosages ofElavil. I felt I was almost normal and cured. So why am I back looking for help? You arenever cured with this condition and when you start feeling better keep doing what works! Ifeel I relapsed because slowly I introduced foods back into my diet that I would neverhave thought of eating before and a bottle of citrate and NAG sit almost full after threemonths. I also wonder if this also has something to do with yeast! I am taking Diflucan 1tablet every three day's. I was wondering what doseges others have taken and for how long.I think this may also do in some part to yeast because I have recently started making loveto a wonderful man and while using condems I had minimal problems and now with out condemsI am having big flare ups. I have tried the Estrace and find that I get urilogicalproblems with usage. I wonder if anyone else has found this to be true in the begining. Iam so frustrated, but I was better for a while and hope to be again. Everyone who hasgiven up hope - PLEASE keep trying! I know so many times I just wanted give up. Ironicallythe man I am Dating is a Uroligist for children and he did not even know of this conditionuntil he met me. This shows how few doctors are getting the message about us and ourcondition! If anyone has any info. about the Diflucan dosage that helped them it would bedeeply appreciated! Marie
CommentI wonder how many women who suffer from this have had problems like bulimia/anorexea,rosacea (or other immune problems), low self-esteem, etc. I believe these contributed tothis for me. I have successfully ended my struggle with bulimia (many years ago), but(among other normal stressors) have been struggling to help my special needs child withdifficult and challenging behaviors. I feel like my inability to really handle thestresses (even though I appear to to others) causes me to internalize my stress whichtriggers this. I am not saying this is a psychological condition, because believe me, thepain and discomfort is very real. I am saying that there is definitely a mind/bodyconnection and all the drugs in the world will not be effective if I can not allow myselfto find some kind of peace. Is there anyone else out there who thinks this is acontributing factor? I am really intense, worry constantly, but on the outside peoplethink I am really funny and laid back. I find that during periods of great stress, I am inmore pain.
CommentI have read so many theories on this site: sugar (apparently a "moderninvention" even though you can get sugar just from firing carbon atoms at iceblocks), soy, sports, God, etc., and while I completely understand the need to attributethis disease to something other than believing the world could be so drastically unfair(remember religion is the original opiate of the masses), please remember that correlationdoes not imply causation. Otherwise you'll drive yourself crazy trying to figure out why.
CommentHi there again! To SUE or anyone who knows: What is the outcome of cortisoneinjections???
CommentTammi: I don't really know anything about the cortisone injections because I've neverhad them and don't know anyone who has had them. It just sounds very painful to me. SorryI can't be of more help. Sue
CommentHi everybody. I haven't written in this guestbook since september of 99, and at thattime I was at a point where I never thought I would get better. I had been suffering fromthis horrible condition for 2 years and I was so frustrated, in so much pain, and was soupset I didn't know what to do next. I decided in november to take a chance, go to NYC andsee Dr. Glazer and Dr. Rodke. I got an appointment for the beginning of January and I sortof felt like this was my last hope. I wish that I had thought to see them sooner. I haveseen them 3 times so far this year, and in those 3 times my condition has improved atleast 85% and it keeps getting better everyday. I have also NEVER met a team of suchwonderful medical professionals. They actually spend time with you and answer yourquestions. They don't rush you and they give you information without you even having toask them for it! They are absolutely wonderful and I would recommend anyone who hasn'tseen them yet to give them a chance. They devote every Thursday to helping Vulvodyniasufferers. The actual appointment does cost a significant amount of money, but I believeit is worth it. The amount of care that you get from everyone in this office makes itworth while. I truly believe that they can help everyone suffering from this condition andeven if they can't make everyone 100% better, I know that they can help. If anyone has anyquestions, please feel free to email me...I would love to help! Thank you Dr. Glazer andeveryone at Dr. Rodke's office...I finally feel good again!
CommentI am wondering how often and for how long women have had to take a course of diflucanand after how long did you get some form of relief. I live in Canada and I cannot get myfamily doctor or my gyn to prescribe estrace cream or anything else that will help withthe burning that I am experiencing. I seem to be one of the "lucky" ones whoonly has burning and stinging on the exterior, but none the less, it is still veryfrustrating and I wish someone would come up with a miracle cure. Any information ondiflucan treatment would be most appreciated as well as treatment with boric acid (can youdo both treatments at once?)
CommentThis message is in response to Tammi, who was asking about cortisone injections. Itried the cortisone injections last year. They did not help me at all. But, I would notspeak for everyone, because the doctor I went to had one patient who did get releif. I hadit done as a same day surgery procedure with a spinal block. There was some pain andswelling afterward but I guess it was worth a try. It hurt a lot less than the vulvarbiposy I had. To me it was just one more thing to try to get rid of my pain, I had nothingto lose.
CommentI just wanted to express my thanks to all who have contributed to this site. I haverecently been diagnosed with both vulvodynia and VVS and am in constant burning pain. Myheart goes out to all of you that are suffering. Like many of you I have been undiagnosedfor years. I recently saw Dr Stanley Marinoff in D.C. and he suggested that I haveprobably had this disorder since the first time I had intercourse-20 years ago!! I amcurrently taking elavil-25mg./day and have yet to feel any relief. I am scheduled to seeDr. Glazer in a week and hope and pray that he can offer me some relief from this misery.I am curious to know if any of you have a history of allergies and asthma as I do. Also,can anybody suggest the name of a physical therapist who practices biofeedback and theGlazer protocal in the Pittsburgh area? I look forward to hearing from any of you; yourcomments and support mean more than you will ever know.
CommentHello everyone. First I'd like to thank everyone for sharing their experiences withVVD. Until finding this site, I honestly had no idea that I wasn't completely alone onthis. I have only been experiencing symptoms for about 9 months, but they have beenintensely physically and emotionally devastating. I don't really know who I can talk toabout this, as people either tell me "it's in your head" or frankly, they don'twant to hear about my "vaginal issues!" I am 21 and have been dating the sameguy for 2 years. We have not been able to have intercourse because of the pain. He hasbeen very understanding, but in reality, a 21 year old guy in his sexual peak can beunderstanding, but still craving sexual activity as well. I have feelings of sexualinadequacy because I can't offer him the enjoyment of actual intercourse even though I amemotionally ready to take the step with him. Hmm..I'm babbling. I suppose I just need tovent some emotional heartache with people who might understand and sympathize with me! Because I am relatively new to this, I am easily discouraged. I have seen over 15 gynosor Nurse Practitioners and have been misdiagnosed and put on tons of medications that havenot helped. I have recently seen an infection specialist and been put on Pamelor, 25 mg(anti-depressant method). I haven't seen any fellow pamelor users and was wondering ifanyone out there has tried it and if so, what have the results/side effects been? Do theanti-depressants take a while to actually start working? I am eager to saturate myselfwith knowledge on every aspect of VVD so I can be better informed to speak to my doctor! Regarding a question I have in terms of symtpoms that I would REALLY like some feedbackon: Currently i have constant burning, itching, and sometimes I feel a sharp, piercingtwinge of pain in the vaginal area (seems to be triggerred more when I am partaking inphysical activity like running, dancing, anything that causes sweating-as a dancer thishas stopped me from the ability to dance completely-again, rather upsetting!) I also havea symtpom that is hard to explain but I shall do my best--it leads to more discomfort thanpain and it feels like my labia, when i walk or dance, do not adhere to each other in a"closed" fashion, and I feel like there is constant air or rubbing of the labiaback and forth which is very unsettling. It has discouraged me from a lot of physicalactivity that isn't essential. Does anyone know what I'm talking about on this one? Itfeels as though moisture or SOMETHING is stopping the labium from sticking together andblocking out air into the vaginal area. Maybe this is unrelated to VVD, but if ANYONErecognizes this symptom, it has been the most perplexing and emotionally disturbing sinceI don't know how to explain it to a doctor! I appreciate you all taking a look at my comments. Sorry for the verbosity! I would bevery grateful for any feedback on the guestbook or to my personal e mail listed! Thank youall and take care!!
CommentI was diagnosed with Vestibulitis in September 1997. I had surgery for the condition inSeptember 1998. It has not improved, and most days symptoms are worse than ever. There isconstant burning, itching, and discharge. Like most, I have been to several doctors,including a specialist in the field of Vestibulitis. His suggestion, "moresurgery". No way. The first surgery took four months to recover from, and cost me mycareer. Never again will I have surgery for this condition. I try new treatments, relyingmostly on cortisone creams and estrogen creams. They seem to bring the best relief. Thank God that I have a wonderful understanding husband that does not rely onintercourse for our times of intimacy. However, it would be wonderful to be that sexuallyactive again. If anyone knows of a treatment, or has a real success story, please e-mail right away.I would love to find another specialist in the Dallas area that really is enlightened onthe newest treatment and has a sympathetic ear.
CommentThis may seem like a rediculous question, but has anyone suggested or tried PreparationH? It reduces pain, itching, and burning in an area of very tender tissue. I am personallyafraid to try it first, but wonder if anyone else has?
CommentJust wondering if anyone else caught the 11 p.m. (EST) NBC news - they had a segment on"vaginismus" which they described as a muscle spasm making penetration painful/impossible. I was surprised I never saw that word on this page. They interviewed 2 womenwho had the problem and were seeing 2 doctors on Long Island (I think) who treat theproblem both as psychological and physical. I thought they alluded a little too much towomen who have a history of abuse or are otherwise uptight about sex, but at least theproblem is getting some nationwide recognition.
Commentjust wanted to clarify...vaginismus is actually a different condition to vulvodynia,although maybe the conditions do have some shared features. vaginismus occurs when themuscles in the vagina spasm, making any sort of penetration impossible, and yes,frequently occurs in people who have been sexually abused. vaginismus is considered apsychological disorder. it is pain, rather than muscle spasms, that leads to people withvulvodynia not being able to have intercourse, although of course sometimes pain can alsolead to tight muscles, due to anxiety. increasing people are becoming aware apparant thatvulvodynia is a disorder with a physical cause. treatment for vaginismus often involves systematic muscle relaxation, which can alsohelp with vulvodynia. certainly, we hurt more when our muscles are tight, and somebehavioural techniques like biofeedback can teach us how to relax our muscles at crucialtimes. undoubtedly some people with vulvodynia also have vaginismus, but they are not the samething.
CommentI was wondering if anyone out there seemed to have pain worse after lifting and holdinga child. I was feeling pretty good for about a week and just this week I babysat for my 1year old granddaughter, well after only 2 hours running after her and lifting I had arelapse like no other time. I have posted in the guestbook a couple of times before and Ialways got alot of info from you fellow vulvodynia sufferers. I also wanted to say I havebeen taking low dose Elavil for about 10 months, I think it has helping, but I also haveput on about 20 pounds. I am not sure if the weight gain is from the Elavil or is from thehormones I take. I take Prempro. I go to my gyn. next week and I am going to ask him aboutthe weight gain. I can live with the extra pounds for now as long as the pain is undercontrol. Good Luck to you All.
CommentMy current gynecologist, who was treating me for vulvodynia, was killed in a tragic caraccident. I'm looking for another physician who specializes in treating this disorder. Ilive in the Philadelphia, Pennsylvania area. If you know of someone, please e-mail me atthe attached e-mail address.
CommentWould someone be kind enough to advise me per my email how I can access the currentGuestbook. The latest I can access is 11 but it does not show recent postings. Many thanks
CommentHello, this is my first time leaving a message here, and I am looking for as muchknowledge and advice as possible!!! I am 25 years old, and have had Vulvar Vestiblulitsfor 3 years now, but have just been diagnosed and began treatments recently. I have beenthrough it all, like many of you. It began after a Kidney infection when I was givenantibiotics. The burning/pain continued, so Dr.s thought I was having re-occurent bladderinfections, and IC (Intersticial cystitis). Guess what, more antibiotics. Then came theyeast infections, at one point I was colonized with yeast. The yeast was cleared, but theburning/itching/pain continued. The cultures were negative, but I was still treated forYeast. All the while I know SOMETHING IS NOT RIGHT HERE!!! Eventually I didn't know whatwas going on???????? I was tested for every disease and infection known to man, and thecultures and pap smears all came back negative. I was biopsied, given steriod creams,yeast creams, hydrocortisone creams... The list goes on and on. Once my GYN figured outwhat she was doing just wasn't working, she referred me to a vulva specialist. Thespecialist then diagnosed me with CYTOLIC VAGINOSIS/Vulvar Vestibulitis. I am wonderingwho else has had this diagnosis?? He says there is no yeast, or other disease, but toomuch of my good bacteria. The PH is off in my vagina, and it is causing cell breakdown. Hetried baking soda douches and polycitra to alkalinize my PH, but that wasn't tooeffective. Now he has me taking 1 gram of SULTRA 3 X a week for one month to normalize myflora. Has anyone out there tried this treatment as well??? I rarely can have comfortblesex with my husband and feel like that that part of me is slowly dying, which makes mevery sad!!! I am determined to kick this thing. I am tired of raking out money and tryingexpensive treatments that don't work. I am hoping to talk with women who have been insimilar circumstances, and what treatments they have tried, and which have worked or notworked!!!!
CommentHello all, I am hoping for some information and knowledge from you out there!!! I havehad VV for 3 years now I am currently 25 years old. Just recently I have been properlydiagnosed and started to be treated!!! I have CYTOLIC VAGINOSIS. Had anyone else out therehad this diagnosis? My Dr. says I have too much good bacteria, and that my vaginal PH isoff. I feel swollen/burning and rarely have comfortable sex. We have tried baking sodadouches, but that hasn't helped. Now I am taking 1 gram SULTRA (a triple antibiotic) 3X aweek for 1 mo. to try and get my flora normal. Has anyone out there tried this treatmenttoo??? I have been through it all and never diagnosed properly until lately!! I would liketo have as much knowledge as possible of possible treatments out there. Please lend ahelping hand!!! Thank You, CG
CommentTo Rebecca: Hi there! Thanks for your response about the cortisone injections. My doctor wants todo it this May 26, but I see you wrote you had a spinal block?!?! Does that mean totallynumb and you can't drive home afterwards? I live in Florida and my doctor is 1 hour fromwhere I live and I will be by myself that day, is this ok? I am not too sure I want to dothis, but I am willing to try, what If I don't do it and it would have helped?? You see,all of us are so scared not to try something and then scared to try it at the same time!Well, let me tell ya, I have been reading the older guestbooks (and if you haven't, youshould read them) and there are some things there that may help. For example, I haveswitched to Tide Free to wash my underwear, PJs and anything else that touches my vagina,including towels. Then I dry them with no dryer sheets. Another thing that doctors told meto try was Dove soap when I take a shower, but that did not work, so I switched to Ivory.Now, I use nothing but hot water and my hand to wash myself, making sure to get in all thecreases!! Let me tell ya, I have been experiencing somewhat euphoria with this new"cleansing method" You may think it is gross, but I do not feel dirty, I feelclean! Now this is something you all can try with no drawbacks , surgeries, etc. Just buysome Tide Free! I also drink lots of water all day long, and make sure to blot very drywhen I go to the bathroom. Another suggestion is when you go #2, wipe (from front to back,like we ALL KNOW) but also use a Kleenex wet wipe, which you can find on the toilet paperailse. This makes sure you are super clean! i have been doing this for about a week and ahalf now, and I feel better! I am hoping this will also help someone else out there too!!I have tried other things people write, and thought I maybe could help someone else too!!There is one drawback, though, Now that I am feeling about 85% better, I am afraid to havesex with my husband due to the fear of going back to where I was 2-3 weeks ago! Oh well,maybe next week! He has waited this long, why not longer?? hehehehe AND REBECCA-- Let me know about the injection!! Exactly what happens?!?! Thanks! PS- try praying too, I have been doing alot of that! ~Tammi
CommentHi, I am being treated for VVD with a tricyclic anti depressant. I have beenexperiencing tiredness (as my doc told me I would), but I am also very constipated. Isthis normal and if so, any suggestions on how to regulate myself again? I have beenreading about women gaining a lot of weight on the anti depressant method-is this becauseof water retention/constipation or increased appetite? What causes the weight gain,exactly? Maybe someone has asked their gyno?! THANKS!
CommentThis is just to apologise to anyone who might have sent mail to my xoom account. Thereseems to be something wrong with it as nothing is coming through. So if you think Ihaven't replied that's why and in the future please send any email to trianek@hotmail.com. To the person who posted a while ago - I've just started taking 10mg of amitriptylineand so far have had no side effects except dry lips and a strange taste in my mouth. Buteven that has decreased now. I'm hoping that I won't put on any weight and because of thatI'm working extra hard at the gym and staying away from fattening foods. Hopefully that'llwork. But I'm not sure if the antidepressants will help as my pain seems to be hormonal andrelated to my menstrual cycle and I only have it just before, during and after my period.Has anyone else been treated successfully for that kind of pain? And if so what did thetreatment involve?
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CommentHello everyone, This is the first time that I've checked this website and theguestbook. I've had vulval vestibulitis for almost 8 years now. I'm 35 now, and have astory similar to everyone else's. Parade of doctor/it's all a yeast infection/in yourhead/allergy etc. etc. I've been on various doses of amitrityline since November 93, withgenerally good results. Sometimes I even forget I have this thing, although sex is still apretty painful affair. What I wanted to say today relates to pregnancy, as I have a sonwho is now 2 years old. Naturally, when I found out I was pregnant, I wanted to stoptaking the amitriptyline for the duration of the pregnancy. My ob/gyn agreed, although hesaid that amitriptyline represented very little threat to the baby, and that it had beenin use for some 30 years, with very few reports of any problems for pregnant women andtheir babies. Of course, when you're going to have a baby even a .005 percent chance of'problems' seems like too much. So I graduually reduced the dosage and then stopped italtogether. I was fine for two weeks and then the pain and burning came back with avengeance. I was hysterical with pain and fear, and in the week that it took for me togain relief after I resumed taking 50 mg. of amitriptyline, I think I shortened my life(and my husband's) by about a decade. I stayed on amitriptyline at 50 mgs for the rest ofthe pregnancy, and am still taking that dosage, with good results, today. I did elect tohave a caesarean section, though, as I couldn't take the risk of any further nerve damageto the perineum and vagina. My wonderful ob/gyn agreed and I had the section with noproblems. And no regrets and fears for the vestibulitis's worsening. Best of all, though,my wonderful son is absolutely healthy and perfect. There really weren't any problems withtaking low doses of the amitriptyline, even in the first trimester. I say this to allwomen who do manage to get pregnant with this terrible condition, and worry about harmingtheir babies with medications that really are absolutely essential to your functioning asa human being. Talk to your doctors of course, but don't flog yourselves if you find youcan't discontinue medication for the duration of the pregnancy. I can't speak about theDiflucan therapy, as I'm allergic to that medication, or the Estrace, as that isn'tavailable here on the National Health Service (I live in England). We're moving to Chicagothis summer, and I would really welcome emails from anyone in the Chicago area. Good luckeveryone.
CommentI have never posted anything at this site, but finding those suffering as I am withthis dreadfully underdiagnosed condition is a blessing to me. I, too, have been goingthrough the same symptoms of vaginal burning, swelling, rawness and irrition for at leastthree years. My marraige has suffered terribly for it, and I become very depressed overit. I've tried the low-oxolate diet and it has helped to some degree but not much. I spentYEARS thinking it was yeast related but the yeast rarely was diagnosed as the problem andthe medications never worked (both over the counter and presription.) I was even put on a6 month regime of Diflucan but am still not "over it." I was wondering if therewere any listings at this site for physicians that have some expertise in this area in theColorado Springs/Denver, CO area? I haven't had any luck so far in finding anyone that hasa decent treatment plan I can follow, so would apprecitate any advice in this regard. Ialso tried filling out the survey, but gave up on question 100 and something because itseemed like the questions started repeating themselves, sorry. It will really help, Ithink, just to talk to others with the same problem. I hope there is some hope out theresomewhere, somehow. It sure is difficult to imagine living with this for the rest of mylife. Take care all, Barb
Commentyou will find my previous postings to this quest book on pages 3 & 5.Http://www.vulvodynia.com/questbk3.htm Http://www.vulvodynia.com/questbk5.htm I am writingthis now to share with you my discovery of what may have been a cause to all the physicalpain and resulting destruction of my health, my marital relationship, and generally mylife. I went through a complete hysterectomy because of endometriosis and afterwardssuffered repeated surgeries where suture granulomas, and pockets of infection at thesuture site were found. All the sutures were removed through repeated surgeries andfinally laser surgery. I kept having problems with the sutures and infection. I went to aneurologist and was treated with lithium & pamelor for genito-femoral neuralgia (nervedamage to the nerves that run throughout the vagina, vulva, and down the legs). I had allthe classic symptoms of nerve damage..stinging pain, sensations of pins & needles,supersensitivity that I couldn't live with it was so bad. Most of the nerve damage wascaused by the infected sutures and afterwards possibly the repeated surgeries to removethem ....all the sutures had to eventually be cut out with a laser in order to leave nosutures behind from surgeries. There is a strong possibility (according to my medicalrecords) that the sutures that were used were the same ones that were later recalled bythe manufacturer due to a bacterial contamination.....the fact remains that off all thesutures that were distributed & recalled...only a tiny percent were actuallyrecovered. All evidence suggests that I may have been one of the patients in which thesecontaminated sutures were used. My surgery was a complete hysterectomy; cervix included. Iwould like others out there in cyberspace who are desperately searching for answers...ifthey have gone through anything similar to what I have gone through....to know that thereare answers and solutions. The answers I have found is a diagnosis & treatmentgenito-femoral neuralgia (nerve damage). My treatment is lithium & pamelor orallysince I was unable to tolerate many of the anti-convulsant medications that may interferwith the body's ability to fight infection. My answers I found through this website...andat Http://www.suturevictims.com/ I hope this helps any of you who are out there searchingfor answers and possible causes to thier pain. I found this website through a friend whohad heard about what I was going through. I understand what it is like to have your wholelife destroyed because of an infection at the site of sutures And to have that surgerysite be the top of the vaginal cuff due to a complete hysterectomy.....and enduring thepainfull unbearable sensations from the resulting nerve damage is the worst thing I haveever known. I feel that the manufacturer of those sutures and thier subsequent actions areto blame. But in my opinion...when all is said and done....nothing can ever give a patientback...what they have lost ....when that loss is thier health...and the right to be freeof pain. Nothing can ever make up for that. Sincerely, Kendra C.silverdarkprizm@hotmail.com, silvernightnyx@hotmail.com
CommentI am still having problems with infection including the jaundice resulting from theinfection itself and suffer daily. Because of the expensive cost of the few antibioticsavailable to treat the bacteria causing this infection I am forced to look to Mexico as apossible solution to purchasing these antibiotics. Again, I wish you all good luck infinding the solutions to your pain and the resources you need to try to restore yourhealth. http://www.suturevictims.com/ Sincerely, Kendra C. (DarkPrizm) silverdarkprizm@hotmail.com,silvernightnyx@hotmail.com
CommentTammi, You were asking about the injections. I think that different Dr.'s do it theirown way. My particular Dr. chose to have me do it as a Same Day Surgery procedure (I knowthat most do it in the office). I think it was mostly because the injections can bepainful,(my vulva was extremely raw at the time) so she wanted to spare me that part. Theydid a spinal, this numbed me from the waist down. The steriod she used was called Kenlog.What she did was she made a grid like pattern on the vulva and then proceded to giveinjections in those various areas. The whole procedure lasted only about 20 min. They gaveme a medication that wiped any memory of the procedure, which was fine with me. If it isdone this way you have to have someone with you to drive you home, because the medicationmake you groggy. I just had to wait until I could urinate, and then my sister drove mehome. The whole thing lasted from about 6:00am-11:00am. This is because they start an IV,and everything else like a normal surgery, and you have to stay a while after theprocedure. My whole vulvar area was completely numb for about 3 hours after the procedure.I did have some pain and swelling for about 48 hrs. As I said in the previous entry, itpales in comparison to the pain that I had with the vulvar biopsy. I could still walkaround without too much discomfort. Like I said, it did not help me with my pain, and itdid not worsen it. But, to me it was just one more day in my quest of painfree days. Idon't think that I really have anything negative to say about it. You just have to makeyour own informed decision on what is best for you.
CommentI have a question, has anyone out there experienced pain after being with a"well-endowed" partner? That seems to be my problem...I was diagnosed about 8months ago with vestibulities..I noticed it was after I had sex with him, I did notexperience pain with penetration but did have the burning sensation afterward, the painlasted for about 2 months...and then went away on its own. I was pain free for about sixmonths and on top of the world but it has started up again. Let me say that while we hadbroken up I had sex with a different person with NO PROBLEM, NO BURNING, NO NOTHING. Sincethen I have reconciled with my former partner and noticed that the burning is back. Cananyone tell me if they have experienced the same problem? Can I be allergic to myboyfriend? Sounds ridiculous but I can't explain why I didn't have problems with oneperson and do have problems with this one. I would appreciate any response. Pardon myfrankness! share with me if they had a similar experience.
CommentI was just informed about this website (and others) by my doctor. I was diagnosed withthis problem for the first time in 1998. But was told that it was a STD caused by the HPVvirus. I have neve been diagnosed with a STD, therefore did not believe this particulardoctor. I went for another two years in pain. My pain is only during intercourse and rightafter for 4-7 days. I thought that was just how sex was supposed to be. Now I have beenmarried for one year. The sex life consist of one time per month. Needless to say neitherI nor my husband are pleased with that. So I finally decided to get a second opinion. MyOB/GYN sent me to Libby Edwards. She does research in this area. She confirmed thediagnosis but thought the cause might be more related to an accident that I had at 10years old. Now I am on the beginning stages of this struggle. It's good to know there areother people out there that I will be able to talk to. If any one has any advice, I wouldlove to hear it.
CommentI have had vulvodynia for just over a year and my story is so similar to the many"many" other women out there. I have very painful clitoral symptoms. It was my first symptom and has been everconsistent since. It is highly sensitive and very painful, although it looks normal. Ihave now also begun to develop stabbing pain shooting up from my clitoris and I can feelchords (of some sort) that run over my pubic bone and there is one there that hurtsterribly (especially upon touch) and it it runs down to my clitoris! I have many of theother symptoms, but they seem to wax and wane. My clitoral symptom is ever present and SOpainful I could die. I have just started Neurontin, for a vulvar pain specialist I flew tosee in Vancouver said I have nerve related vulvodynia. Anyhow, I have just started, but amnot feeling very optimistic after reading other entries. Are there other women out therewith severe clitoral symptoms? Please e-mail me and give me your thoughts. Also, I live in Canada and would really welcome other women in Canada to e-mail for Ifeel very alone, I feel discarded by my doctors who hate dealing with me and this pain andI feel this is a fate worse than death. How is this for irony.. having something sopainful (vulvodynia) that you actually want to kill yourself, yet feeling so perfect andhealthy everywhere else in your body that you desperately want to live! I feel powerlessand one of the worst coping problems is that I don't have a doctor who knows about this orcares about me. I know I am a problem patient to my doctor who would love to have medisappear. I wish a prominent female of some sort (movie star, etc) would come forward ifshe has this so that we could get exposure and support. My husband is my pillar ofstrength and I am thankful to God for him - but the guilt I feel for having this bloodydisease makes my heart ache. I welcome anyone to talk to me, for I need the support, advice, help, knowledge andunderstanding of other women like me. If I were to win the lottery I would give most of itto research in this area, for it is a rotten shame (really) that we have to suffer likethis, yet the suffering continues... E.
Commentto the posting by Inquisitive Mind! on 5/11, I too experience constipation on tricylicantidepressents. You can try medications or fiber to regulate this but I chose to stop thetricylics as I didn't feel their benefits for me were worth all the side effects.
CommentI too suffer constipation due to tricyclic treatment. I am thinking about going off themeds as I REALLY don't enjoy the constipation and groggy feeling, but are there any otheroral meds that deal with burning pain reduction but don't cause constipation? I don't wantto be in pain but the meds are causing me other kinds of pain!
CommentTo CG, I too was diagnosed with "too much good bacteria" and did the bakingsoda douches and then the antibiotics and when it was cured the pain wasn't one little bitbetter. The baking soda was soothing on cantact but that's it. Ask your doctor if there isa topical antibiotic you can use; you don't want to be taking oral antibiotics if youdon't have to because you'll be selecting for immunities in your body's microorganismsthat might be a problem later. Maybe lots of people have too much acidophilis and it isn'tsuch a big deal but they find it more in vvs patients since they're at the doctor anywaybeing cultured for everything under the sun. By all means get it under control, though,because otherwise you'll never know if that's what's causing YOUR pain.
CommentDK, THANK YOU for writing back, I would love to talk to you about what you havedone/used to get this under control!!! Lucky, my Dr. didn't prescribe an oral anti-biotic,but the SULTRA is a topical antibiotic. I am very much against using anti-biotics unlessit is totally necessary!!! Since I have started the treatment I really haven't felt muchdifferent, even a little worse. I fear that I will go through this messy and annoyingtreatment and nothing will change, just like you said. But I'm not going to give up hope,there must be something out there that will work, or help. I am just happy there issomeone else out there that I can relate to. What do you know about using Estrace? Pleasewrite back when you can Thank You, CG
CommentIn response to Terry's post on 4/28/00...yes, the boric acid treatments that my doctorrecommended did seem to help, as long as I was not having severe irritation to begin with.I found that they seemed to work best when I had mild to moderate irritation. If I was insevere pain, they would just make matters worse. The treatment I was given was for bedtimeinsertion. But if I used them, say, within a day or two after I attempted foreplay or sexwith my boyfriend, it would make matters soooo much worse!!! IT WOULD BURN SO BAD THAT ITWOULD WAKE ME UP IN THE MIDDLE OF THE NIGHT, SEVERAL TIMES!!!!! Also, I have experienced a lot of discomfort after having an orgasm. I can be perfectlyfine for weeks, then my boyfriend would manually stimulate the clitoris to the point oforgasm, and then the vaginal wall area would burn and be irritated for days. This stillhappens. This must have to do with the muscles that are used while having the orgasm.Since all the muscles and surrounding tissues are connected, this probably explains it. Icould certainly benefit from biofeedback and/or massage. Does anyone else experience thisafter orgasm? To Karen: Thanks so much for your post. If your daughter is Shannon, she has contactedme already. Thanks again... Hang in there everyone...Happy Friday!!!!!
Commentdoes anyone know of a doctor experienced with this condition in the albany, ny area? mymain symptons are burning, itching, and severe irritation. my choice of wardrobe is solimiting - i have to buy pants at least a size too big so they are baggy in the crotcharea. and, jeans are out of the question. a nurse practictioner i just saw prescribed acream called cromolyn - has anyone had luck with this?
CommentHi Everyone, Has anyone used Ozone therapy? I was told by an herbalist that it will cure vulvodynia.I've read that it has cured herpes and AIDS? Does anyone know about this? Also, has anyone heard about using a product called collidial silver? (I'm not sure ofthe spelling) Please e-mail me. Also I am going to see Dr. Willens in San Diego in two weeks. I've read on thisguestbook that many people have found success with Dr. Glazer in New York - I waswondering if anyone has been to see both (or either) doctors and what were thedifferences? I live in Los Angeles, are there any support groups in this area? Thanks for any help. Karen K
CommentDon't eat soy, or anything with soy bi-product(s). Yes, it does sound way too simpleand a bit crazy, but please try this for at least a month. I know I have found relief innot eating soy. If you try this, please respond. I really believe this is part of thepuzzle. Nothing else has ever worked for me (Lidocaine, anti-depressants, boric acidinserts, certain diets, etc., etc., etc.,. I know that if I eat ANYTHING with soy in it, Iget swelling and intolerable discomfort. Let me hear what you think. I've beensymptom-free for at least 6-months.
CommentIf an herbalist could cure AIDS he'd be on the cover of the New York Times, publishedin JAMA, lauded by the WHO and probably smoking ganja in Jamaica where he retired aftertrading in his share of the Nobel Peace Prize. Could someone please explain to me howpumping way less ozone into your body than you probably inhale during a trip to thegrocery store in L.A. is going to stop the replication of a virus that relies on the sameenzymes to replicate as our own T-cells? AIDS patients are desperate. Men in South Africaeven believe that raping a virgin will cure AIDS. Are we that desperate that we'll throwmoney at someone who says he can cure vulvodynia the same way as people "cure"AIDS and herpes? Gosh I hope not.
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CommentTo the person who responded to my question on Ozone, I'm sorry that you are so closed minded to alternative treatments. I am by no meansdesparate. I have a background in journalism and news reporting so I do a lot of research. Isuggest you look up ozone on the internet. There are several sites that explain theprocess and several testimonials. Believe it or not, people that come up with cures for AIDS are not popular with thepharmeceutical companies that make a ton of money off of sick people. Ill people are amajor industry in this country. Money controls this country and much of the world - notdoing the right thing for humankind unfortunately. (It's the same type of thing with thetobacco industry. Rent "The Insider" with Al Pacino.) I know you won't agree - but after reading most of these guestbooks I feel ozone isprobably one of the best solutions to look into. Every solution offered so far focuses on covering up the pain. Anti-depressantscertainly don't seem to be a good idea. Just read several of the entries. There areseveral women considering getting on them and the women who have taken them say theyweren't offered much relief. Many of the women are now trying to wean themselves off ofthe drugs. I'm not bashing western medicine - it's just not the only soultion in thisworld. When we feel that pain in our vulva, our bodies are trying to tell us something - weneed to figure that out - not cover it up with medication. If vulvodynia is caused by abacteria, fungus or some sort of virus that western medicine has not been able to pinpoint- the bacteria, fungus or virus will not be able to live in an oxygen rich environment. -(In 1929, Otto Warburg, M.D. discovered that cancer cells could not survive in an oxygenrich environment. He won a nobel prize for this discovery.) I'm not a scientist - like amentioned check the ozone websites for more details. I am saddened by your entry in the guestbook. We have to leave no stone unturned inconquering this disease. I thought pot was supposed to expand your mind? I'm sorry that you did not have the courage to leave your name .. I wonder if you aresomeone in the medical profession who makes money off of all our doctor visits. Karen
CommentSorry for the spelling errors in my last entry - It's late and I hit the submit buttonby mistake - Don't hold it against me
CommentThis response is to DB of the 5/13th entry. Why not try Dr. Glazer of New York, NewYork. I've been to him once in November and he is very thorough and helpful. I too sufferonly from burning, itching & irritation only after intercourse...during intercourse Iam fine, he put me on biofeedback therapy and that seems to help. I haven't been backsince although I should, but its only because I live in another state. I must say hisvisits are rather costly so be prepared financially. Hope you find the help you need...myprayers are with all of you!!!!
CommentMR - thank you for your response. i am going to consider visiting dr.glazer in ny, ny.even though it may be expensive, it will probably end up being cheaper than trying all theother treatments out there and praying for success. i still can't believe that so manywomen suffer from this and no can can really figure it out. doesn't make sense to me....
CommentDoes anyone out there know what Canadian women are doing for this or who they areseeing for this? Is there any Doctor in Toronto (or somewhere) that anyone (or any doctor)could recommend as a good vulvodynia specialist? As far as in the US, is there a general census as to who the prominent vulvodyniadoctor is? If I could pick one, who should I pick? As someone living in Canada, it isoverwhelming to try to figure out what doctor to see, if one were to financially be ableto visit one. Also, is douching with a bit of luke warm water and baking soda bad for the vagina? Imean, is it not recommended or can one douche with that occassionally to relieveirriation, caused by ovulation say. Also, I just wanted to remind us all to give our spouses who love us so much and sufferwith us a big hug. I have the best husband I could have ever asked for and he keeps meliving - literally. They suffer because they cannot help us and I am ever aware of thisand ever thankful for his arms that tell me I am loved regardless of this condition. Iknow you all feel the same... E.
CommentOtto Warburg won his Nobel Prize for showing that NAD and FAD act as hydrogen acceptorsand carry protons to the mitochondrial matrix where the proton gradient drives oxidativephosphorylation. He also showed that cancerous cells are able to survive longer inanaerobic environents than ordinary cells. That is NOT the same thing as saying oxygencures sick cells. I know this has nothing to do with vulvovaginal pain but I just couldn'tsit here in case a young person reading the previous posting on ozone therapy gets amistaken notion about AIDS being curable. Conspiracy theories are popular, but CBS and LeeHarvey Oswald are hardly the same thing as the FDA having a cure for AIDS and holding itback. Did you ever hear how AIDS was invented in a laboratory to kill the black man? Howabout how filling out the census will get you evicted?
CommentTo the question dated 5-4-00 no name: You should not take Ultram w/ tricyclicantidepressants or MAO inhibitors. (increased risk of seizure) or really the SSRI's bothUltram and Paxil/prozac ect inhibits serotonin reuptake. I too have been to many doctorsand have just discovered this website. I am a pharmacist and am willing to research anypossible cure/relief. I have just learned about this condition, I knew it wasn't in myhead. I am gathering information and am going armed to my gyn as soon as I learn moreabout it. Has anyone had any luck w/ interferon injections. And where do you inject them?
CommentI AM POSSIBLY CURED! I first entered my story in one of the guestbooks(3rd?) a couple of years ago. I wasalso on the listserve for a while, but there were so many emails I de-listed myself.Anyway, here is my story. The history I will make very brief since it is the same ol' sameol' 1990 age 27: diagnosed with HPV. Had them frozen off with liquid nitrogen. Here thepain (vulvadynia) started. Didn't know what it was then of course. 1990-1993: Engaged in infrequent very uncomfortable intercourse which would triggeryeast infections. They got out of control then intercourse became impossible. 1994: self diagnosed vulvadynia
CommentContinuing"I AM POSSIBLY CURED". Sorry. I accidently pushed the enter key. 1996: Got married (to a saint who didn't mind that we may never have intercourse) 1997: miraculously managed to have intercourse albeit uncomfortable and BAM gotpregnant. (that was the plan) 1997-2000 Pregnancy, Childbirth and Nursing made vulvadynia even worse. Now we're up to date. After a very long haitus of my period because of pregnancy andnursing my period came back . It had been 2 years and 9 months with no period. So let mesay that possibly the return of my period radically changed my body chemistry and harmonalbalance and effected an immense improvement or it was this: RIFING. I heard from a friendwhose Husband is an acupuncturist here in Austin, TX. She said he had a rifing machine alady with cancer had bought him. Apparently there have been amazing results with treatmentwith this machine from curing cancer to cold sores. I understand the science behind it butit is too much to write here plus I'm not an expert. (However for all those interestedthere is a book written on it and several websites. put "rifing machine" in thesearch engine and you'll find info. Anyway I did it. I went for a treatment (50$) and something happened. I'm not exactlysure what but I COULD have intercourse with my husband!! The frustrating part is that thetreatment coincided more or less with the return of my period, so I'll never really know. I went last week for a second treatment and we had intercourse today and not only wasthere no pain, IT FELT GOOD!!!!!!!!!!!!!!!!!. Oh my God I have been waiting a decade forthis. I want to share news and everything I know about it with all of you , my sisters ofpain. If you want to know more email me. I won't be reading this guestbook so contact mepersonally. I'll correspond with you individually. I'd be happy to talk on the phone too.
CommentHey everyone, I am a sufferer of the dreaded vulvodynia. I have suffered with this painsince I was a little girl. I am now 18 and still suffering severely. I have visistedseveral doctors and was put on a special diet by a naturopath to treat what he said wascandida, but I am still in pain... I have really only found out about vulvodynia, I havetried tablets and creams all my life but I really want to be fixed or relieved of pain insome way!!! I don't know where to start though. Is there any suggestions as who toconsult??? Most people think this problem is psychological, but after researchingvulvodynia myself, I have finally found that I am not alone and this problem is a realthing... I really need help though... Please e-mail me if you can tell me where to startand suggest who to see. I am from Australia. Thank-you...
CommentWell Ladies-I think I have some good news. My GYN told me yesterday after my visit thatshe is going to be conducting research on new drugs with a drug company. She is in a verybegining stage and would like to gather stats from as many women as possible who sufferfrom Vulvodynia. I asked her if she was going to apply for money from the NIH and she saidNO because it takes way too long and she wanted to get started ASAP. We discussed the medsthat are currently available and she feels that right now the side effects out weigh thebenefits. She seems very genuine in this project. The visit was a bit painful as I am sureyou can imagine, but she actually gave me a hug afterwards. How often do you hear aboutthose types of doctors? I myself was shocked. She really cared that it hurt me and she wassweet and sypathetic. Please write to her at the following address. Let her know all thethings that you have tried and when you started having the problem and when you werediagnosed. The more letters she receives the more inclined the drug company will be tocontinue the research with her. Let's face it, they want to make money and they need tosee how great a need the new drug will be. So please write to her and don't getdiscouraged. This is the beginning. Research can take awhile before a new drug can comeout. Be patient and persistant and it will happen! Dr. Marianne Styler 211 Cantral ParkWest New York, NY 10024 f-212-877-2511 You do not need to live in the NY area to particpate. As always feel free to email me. Lauren
CommentTo the person who does not have the courage to list his or her name regarding the Ozonedebate and alternative treatments ... Like I said, I am not a scientist. Read the Ozone websites ... which you obviouslyhaven't. It's very clear to me that you do not suffer from this disease. I suspect you may beone of the sponsors of this website - I realized that when you used the word JAMA in yourfirst entry in the guestbook. Anyone who suffered from this disease would not even use the word"desperate". I'm sorry that you have such a closed mind or maybe you're justafraid of losing your income.
CommentMy question is to Beth of the 5/1th entry entitle "I'm possibly cured" Itried looking up Rifing Machine on my search engine and came back with zero...can you giveme some type of explantation as to what it is? Also to Lauren, entry 5/16, I've taken down the name and address of your doctor, I willsit down tonight and write to her...I'm determined to help in finding out what causesthis. If we all take this attitude, I'm sure we will figure out at least what is thecause, that's a start, don't you agree? GOOD LUCK TO ALL!!!
CommentHi Everyone, I have just written a brief letter to Dr. Styler. I urge all of you reading this to dothe same. Imagine all of our voices combined. Imagine all of our pain combined. Poweralways comes in numbers. Help all of us by writing. Thanks Lauren..... Candace
CommentHi all- I have not writeen for a while. The past couple of months had been hard. Itseems the pain is getting worse over the past few weeks. I have had to leave work. LAstFriday I went to Boston to see Some Dr's who have knowledge about this. They pat me onpremarin cream, acidophilous, L- Arginie and other meds. I recommend these dr's to anyone.I thank Tonya who has given me the the dr's name. Anyone who would like to go see thememail me and I will give you their info,. It took me a month and a half to get in there.Wer all need to be strong. I know it is hard. I ahve troubles being strong somedays.
CommentTo Kate from Australia, Hopefully, you live near Sydney. There is a wonderful doctor who used to practice inMichigan, but moved back 'home' to Australia. His name is Dr. Richard Reid. He is a very caring doctor and very sincere about helping women with this affliction. Hopefully, this info is of some help to you.
CommentHi, I am 21 years old and have been suffering from vaginal pain for 5 years. I have been tomany doctors with no success. I think the last time I counted I had tried 38 differentmedications with no help at all. I always hurt the worst a week before my period and theweek after. It seem like I hurt worse when I am constipated. Has anyone found a connectionbetween birthcontol pills and vulvodynia? It seem like I started having the problems whenI started the pill and became sexually acive. I can hardily remember it has been so long.I have only been with one person and I am still with him. Luckily he has been realunderstanding and patient. I would appreciate any advice on what has helped others outthere. It seem like nothing I try helps. Please e-mail me at Quanahj@hotmail.com.
CommentHas anyone had biofeedback? Has it helped? the dr recommended it to me..
CommentFor those wanting more information on Rifing, search under Rife Technology.
CommentI wish somehow we could form a forum that would show our numbers and our urgency. I wasreading postings from the first Guestbook and here it is 3 or more years later and thosewomen are still suffering, we are still suffering and new women will be sufferingtomorrow. What can we do??? I wrote the Oprah show some months ago and pleaded for her to do a show, but got zeroresponse. Like people have said in the past, our exact numbers are unknown, but ournumbers are incredible I fear. I think the website is a something we need, but the websitewon't cure us - nobody who doesn't have this cares that we vent on this site. How can weget ourselves into the mainstream and into the general population? I don't know, but Iknow there are some real bright women out there that might be able to brainstorm and thinkof something. It is May 2000 and we are still suffering like tortured animals and most of thepopulation, including the medical community is oblivious. I sometimes get so mad at thesituation that I could cry and scream endlessly. What are the names of the labs or medicalresearch companies that are studying this? Are there any? (I am not sure, that is why Iask) Society has figured out that yeast infections were horrific to endure and createdcures for them (hopefully they don't cause the vulvodynia), but here we, THOUSANDS of us,suffer from a medical problem which makes a yeast infection look like a stubbed toe, andwe are disregarded, laughed at (I was), passed over, and told to wait and be patient. Weare burning alive down in our crotches and every day we lose a part of ourselves. Itaffects our functioning in every regard. Why won't someone or a lot of someones help us? I don't get it and I don't know how to get us "off this website", per say,and into action, if you know what I am trying to say. I am 30 years old! I am just a"baby" per say, and I can't go one minute without pain and I can't be intimatewith my husband, I have not been able to conceive or give birth to the three babies Ialways dreamed of and I suffer an unthinkable torture without the real hope of a cure sofar, for the doctors are ununited and research is sparatic and unmonitored. Do we writethe Surgeon General or the President or who? I would do anything, eat anything, not eatanything, take any drug, adhere to any regimen required to rid my body and soul from thiscondition. Why are we not heard? Are we not loud enough because we have not been properlyorganized? There are so many of us that post entries, that belong to support groups, thatbelong to the NVA and VPF, that have tried and sometimes failed at various doctorstreatments and plus think of all the women out there that do not openly participate inanything. Our numbers must be unreal and yet we are not a strong enough group to makechange. We must somehow gather together and figure this out - it may be one of our onlyhopes of a cure and understanding. What can we do to educate people about this disease, even if they don't have it? Justbecause I don't have MS, doesn't mean I don't know about it or contribute funds forresearch right? There are so many bright women out there...please brainstorm and let's tryto figure a way to get us and this horrific disease recognized. Every gynecologist shouldknow about this - nothing else is acceptable really. I BELIEVE WE CAN (IN SOME WAY) CONTROL OUR DESTINY IF WE COME TOGETHER IN A WAY NOT YETDONE AND ACT AND DEMAND ACTION. Breast cancer patients did it, how about us? I don't mean to offend anyone, I am just trying to say what I feel is something toreally think about.
CommentI agree with everything that you've said and I've written to everybody that I can thinkof and gotten no response either. I'm also amazed by how many Drs. don't know about VV anddon't care to know. For years I was told that the pain was all in my head, that there wasnothing wrong, that I needed surgery for an anatomical problem, etc. The only way thatOprah will do a show on Vulvodynia is if she has it or her best friend does. I don't knowwhat else to do.
CommentDon't laugh (OK, laugh because this is pretty dumb, but no worse than Oprah or DonnaHanover), but if Hillary wins, do you think it would be worth writing to her to ask thatshe push funding for rare diseases that affect women? After all, if your husband stickscigars up someone's twat your embarassment factor is basically nonexistant and she mightnot mind taking up our cause. She'll need to appeal to women if she wants to stay inoffice.
CommentThat's pretty funny (the cigar comment that is) but it's worth a try. But seriously Ihate to say it but until one of these high profile women get vvd they will not listen tous. To all the women in Australia who read this guestbook, I will be writing to Cleo andCosmo and all the women's magazines to ask them to do an article on vulvodynia and I urgeyou to do the same. Maybe if we all send them letters they'll realise what a horriblething this is to have. Hey one less article on "How To Have Good Sex" won't hurtthem. Think of all of us out there who can't have ANY sex because of vvd.
CommentA Question to anyone and everyone, (especially those with experience, or thosephysicians reading....) I am going to begin a therapy with both estrogen and testosterone creams, alternatingnightly, to be applied externally, for ONLY vulvodynia, not Vestibulitis. Has anyone hadexperience with this? Does anyone out there fully understand what the effect is supposedto be? I understand the estrogen cream is supposed to thicken the skin, but what about thetestosterone cream? Thank you for responding in advance, Candace
CommentCandace, it's my understanding that the testosterone cream also thickens the skin. Itmay also improve your libido!!!
CommentThank you for replying, whoever you are...Amazingly, I have no problem with libido,just the follow-through! I will keep you all informed of any progress I make with thistherapy. I made a joke about facial hair and a deep voice to a friend, The pharmacistwarned me that mis or over use could do just that. Just think if I used enough maybe Icould sit very still and watch sports on tv....NOT
CommentTo db that left a message (a while back) regarding comolyn..have you tried it yet? Mydr. prescribed it - it's a cream form of an asthma medication the reduces inflamation ofthe lungs. I haven't used it yet but am looking for more information.
CommentLast week someone with "too much good bacteria" asked me what I did for theproblem but I don't have her email address. What I did was do the baking soda douche maybethree times and two ten day treatments of Cleocin cream (I think the generic isclindamycin) inserted with an applicator every night. As I think I said earlier, it didnothing but I have just spoken to a new doctor who says birth control pills can alter thecomposition of discharge which can cause both bacterial overgrowth and skin erosion, inwhich case the bacteria I had would qualify as a symptom, and not a cause. I hope thathelps. I wish I could be more encouraging.
CommentThis is to Karen, the woman out there with the daughter relapsing with Vestibulitus. Myemail account got messed up and I lost everything in it. Therefore I don't have your emailaddress anymore. Went to see Dr. Sobel (in Detroit) and he is increasing my antidepressant by 5mg each week until i reach 50. He is also puting me on Diflucan for about 6months. In the meantime he is reasearching cortisone injections ( I believe that is whatthey were) that would be shot into the two really bad spots I have 3 times a week. If thatdoesn't work he mentioned surgery as a last resort. He also mentioned Biofeedback may benecessary during the next 6 months as well. Don't know if this is going to work but it isworth a shot. Karen, I would like to hear about your daughter and how she is doing. Pleaseemail me if you get the chance. Thanks. I will post with any news. Especially if I feelbetter on this treatment.
CommentLIVE A million stars light This beautiful night This is not a night to die Let me sing anddance Beneath the sky I have such love to give To give! I want a chance to live Live For the one I love Love As no one has loved Give Asking nothing in return Free Free to find my way Free to have my say Free to see the day Be Like I used to be Like a wild bird free With all of life in me Though this world tears us apart We're still together in my heart I want the world tohear my cry And even if I have to die Love will not die Love will change the world I'll love until love wears me away I'll die and I know my love will stay And I know mylove will stay... Live For the one I love Love As no one has loved Give Asking nothing in return (Thought this would be a good anthem for us)
CommentLIVE A million stars light This beautiful night This is not a night to die Let me sing anddance Beneath the sky I have such love to give To give! I want a chance to live Live For the one I love Love As no one has loved Give Asking nothing in return Free Free to find my way Free to have my say Free to see the day Be Like I used to be Like a wild bird free With all of life in me Though this world tears us apart We're still together in my heart I want the world tohear my cry And even if I have to die Love will not die Love will change the world I'll love until love wears me away I'll die and I know my love will stay And I know mylove will stay... Live For the one I love Love As no one has loved Give Asking nothing in return (Thought this would be a good anthem for us)
CommentMR....In response to your "well-endowed" comment, I think that's what broughton my vulvodynia. I had problems with my fiance when we first dated eight years ago, andwhen we broke up the pain stopped. After getting back together a year and a half ago, Ibegan having problems again. After self-treatment for yeast to no avail, then seeing adoctor who diagnosed a bacterial infection, I found this site and knew what the realproblem was. Fortunately, I then found a gynecologist who is well-versed in this (Dr.David Ryker in Tulsa, OK) and was diagnosed just a few days ago. I was really upset withthe diagnosis, even though I suspected it, so I didn't discuss possible causes with him,but have an appointment next week to discuss treatment plans. I hope I can figure out agentile way to ask him about my theory that my partner may be the possible cause, to findout if he has any suggestions about making sex easier. It really bothers me to think of myfiance being the problem (even he has brought it up)...I'm worried that we'll never have anormal sex life. Anyway, I've begun the low-oxylate, high calcium-citrate diet and willdiscuss creams, etc. with the doctor next week. Have you asked your doctor about yourfiance? I'll let you know what mine says next week. By the way, to everyone on this site,It's so nice to know that this problem can be dealt with in many ways and I appreciatereading through all your comments. Thanks and good luck!
CommentI am 41 yrs old and have been through two years of hell with no end in sight. After ayear of a variety symptoms and a hundred different treatments and seeing specialists inBoston and NY, I was diagnosed with Hymenal Fissures. Has anyone every heard of this? Ihad surgery to resect the fissures, only to have another turn up a couple of months later.I had another surgery and that has not seemed to close the fissure. Now I am faced withwhat to do next. One Doctor I spoke with says there is a risk of having a third surgeryaround the hymenal ring in that it could exacerbate my vestibulities. In spite of all theexpertise I have sought, there seems to be no clear resolution. I am at the end of my ropeand sometimes feel suicidal. Where can I get help and answers? Has anyone been to a goodtherapist in NYC to get some support in not losing your sexuality and how do you work itout with your partner? If anyone out there can get me some thoguhtful words, I would be sothankful.
CommentTo Libuse-entry 5/20/00: I think we might have something here...I too didn't have anydifficulty with past partners, but started having them again since I have reconciled withmy ex-boyfriend who happens to be "well-endowed". And to answer your question mydoctor did mention that my VV was not caused by my partner but definitely exasperates myproblem...you see the problem with us is that there is irritation due to the size of ourpartners because we don't exactly "fit". All I can suggest is that when havingsex use sufficient lubrication...my doctor recommended, believe it or not, Criscoshortening, he says its a natural lubrication that will not irritate. Also don't have anyreservations talking to your doctor about your partner or your concerns, that's why theyare there, to address your questions/concerns...as far as medication is concerned, Icurrently take Ultram for pain...it seems to help, however it does have a lot of sideeffects. If there is any other way I can help, don't hesitate to ask...Good luck to youLibuse!!!!!
CommentThis is to Quanahj@hotmail.com. It is strange that you mentioned that it is worse withconstipation. I have noticed the same thing and was afraid to mention it, because itsounded so silly to me that there could be a connection. I guess if 2 of us noticed it, it can't be as silly as I thought. As far as the birth control is concerned. I got better during pregnancy and am steadilygetting worse now, which I thought was due to decrease in hormone (I am 41). The doctorput me on Birth control to regulate hormones and also to skip my period for 3 months at atime, which sounded good to me. I wasn't seeing a benefit from the birth control after 6months and decided to try getting off of them, because alot of people say they get worsewith the birth control pill. I just stopped last week, so I will keep you updated on myprogress. I too have tried many different medications and creams, but to no avail. My next stepis biofeedback, but I need to be able to get a referral from my Primary care doctor anddon't know if they will or not. The physical therapy session is $63 every 15 minutes andmost appointments are a half hour according to the receptionist. I wonder how manysessions you need before you can see a result. It could cost me some big money and not fixa thing. I have been down that road before.
Commenthello everyone, I rarely write anything here because after everything I've been throughI'm just sick of talking or thinking about it. I thought I should finally get it over withand tell everyone my story. I've had vulvodynia for over four years. I've been through almost every treatmenteveryone always talks about. Taking pills, using creams, avoiding foods, endless bloodtests, and painful examinations. I've also been through the countless doctors and thoughtsof suicide and hopelessness. My symptoms were itching on a regular basis and excruciating pain with intercourse(making it impossible). Most recently I've had my three pudendal nerve blocks which seemto have made sex almost painless. This is a procedure where a numbing agent is injectedinto the pudendal nerve. After three treatments it should last forever! Anyway, I still have itching and some pain and soreness during and after intercourse.To lessen these symptoms, I take allegra and I use SOOTH-A-CAINE by Banana Boat as alubricant. This aloe and lidocaine gel works really well to lubricate and sooth the areaeven on a regular basis. Anyway, my next step is biofeedback and pelvic floor exercises totry to relieve the rest of my pain. However, I can't afford it at the moment. Treating mypain has left me and my husband completely broke. The strangest thing is that I have auto-immune symptoms that started at the same timeas my vulvodynia. I have debilitating fatigue, arthritis, and food allergies, and I'm only21. Through many tests my doctors found that I have a high count ofanti-nuclear-antibodies that are speckled and a high count of anti-thyroid antibodies.This all of course is linked to an immune system dysfunction, which I am sure is the causeof my vulvodynia. Has anybody else had these symptoms? So now I'm taking my allegra, synthroid, avoiding foods that I'm allergic to, and usingSOOTH-A-CAINE. I hate having to think about it so much and take medications and worryabout what food I eat and so on. Finally now however I am able to have intercourse with my husband. But it's strange, Ithought that everything would change and I would be happy and sex would be wonderful. Butnow I find myself not wanting to have sex, at least not with my husband? It sounds awful Iknow. But I know that it is only because of all the pain I associate with intercourse. Andsince I only had vulvodynia since I've been with him, it's like I only associate the painwith him. It's just that when I think of sex with him, I think of pain. And I'm hopingthat after a while that notion will go away. But I'm afraid I might need some kind ofmental therapy to get rid of this mental connection. OK, well that's everything I've been through. I just thought I should tell my story.Sorry it's so long. I actually left out the details. thanks Amy
CommentDid someone mention that their doctor said KY Jelly shouldn't be allowed to be sold asit's very bad for you? It's shocking that a company would be willing to dupe women likethat. An alternative to using Crisco oil as a lubricant is to use pure aloe vera, straightfrom the plant. It's not so oily and sticky and feels very much like your naturallubricant.
CommentThis is to those people who said that their vvd was worse when they were constipated. Ifind that sometimes after I go to the toilet I get not exactly pain but more likediscomfort in the vaginal area. Is this what happens to you?
CommentI have been to this site a few times, but this is the first that I have written in it.I started having problems a couple of years ago. THe doctors kept telling me I had nothingwrong, or give me yeast perscriptions. I went to many doctors who misdiagnosed me. Ifinally went to a clinic because I thought I had another yeast infection. he diagnosed mewith Vestibulitis. After two eyars of major suffering, I am finally feeling good again.(knock on wood). He recommended a doctor in the north suburbs of chicago. Actually, I think he may bethe only vest speicalist in Illinois. Anyway, he put me on 30 mg of Imiprimine (Tofrinil).Most importantly, he told me the worst thing you can do for this condition is to putanything on your vagina. He said, for about three months, no sex, no creams (yeast,hydrocortizone, lube, NOTHING.) He said, dont even let the shampoo and conditioner rundown your body. I now wash my hair seperately in the shower. I only use nonscentedNeutrogena soap on my whole body, and never wash inside the vulva. the doc said thatwashing the 'hair' past is enough to get you clean. (women are too obsessed with thedirtyness of their vaginas anyway). He said to change my laundry detergent to Tide Free,and rinse with water EVERY time I urinate. (obviously you can't if you are out). Therewere a few more 'instructions that I cannot remember right now.) The point is, you muststop putting creams on your vagina. Obviously it is getting many people nowhere. I readthese entries, and women keep saying, "i use cream every day", or "I'vetried every cream, and nothing works". WHy not give this a try. You have nothing tolose. ALso, it takes time, i did not see a significant improvement for many weeks. and Ialso felt A LOT of pain without antipain or antiitch creams. I guess I know this soundslike a really 'simple' treatment, but I am just saying what has worked for me. My help mayhave come from the Tofrinil, but I truly believe this advice can help some people. Thedoctor that I saw is out of Northbrook (a suburb of chicago) His name is Dr. Meltzer. Ifyou are in the area, he is very knowledgeable. I didnt belive that these simple obviousinstructions could help me, and I was very skeptical. How could keeping chemicals awayfrom my vagina help this? Well, so far so good. I dare not say cured, but here's hoping! We always thing, "Of course don't put chemicals on such a delicate skin,. . . .but le me put htis cream on ly vagina. . " HELLO< this is a chemcial, right? Please give it a try, and also be patient with it. Stephanie
CommentThis is to answer the question about constipation. In my case, I sometimes don't go for 2 days or more. This is when I feel the vulvodyniapain is worse. If I take a laxative and finally go to the bathroom, the pain lessens alittle. I have pain almost daily and I have not had intercourse for more than 2 years. In fact,I really don't want to have intercourse at all now. I have seen entries where women wantto use lidocaine to have sex --- I use lidocaine just to stop the intense pain (forget thesex). I can really relate to all of you, for I am about at my wit's end, too. If it weren'tfor my daughter (5 years old), I would definitely consider suicide as an alternative toliving like this. I am sure my husband would be better off. Sorry, I had to vent.
CommentHi Marilyn, I'm sorry to hear that you are so blue. I know this can be a very difficult disease. Iam 32 and single. It's not easy. Have you thought about going to counseling with your husband? It might help. Also, when I had a boyfriend, we got creative with sex and it was actually really fun.I felt more relaxed because I wasn't concerned with getting pregnant. I try to look at athe VVD as an oppurtunity to open up sexually. How about trying some handcuffs with yourhusband or massagers? It can be really fun and I'm sure he'd appreciate it. Life is so short. Try to keep focused on the positive. You are lucky to have a husbandand daughter. We never know what tommorrow will bring. Who knows you might win the lotteryand solve this problem for all of us! KK KK
CommentTo Stephanie. Actually I agree with staying away from all creams/pills, etc. I did thatfor the last 2 months, but this weekend had a wicked yeast infection and HAD to see adoctor last night. I mean, how can you not take anything when the itching, burning,discharge is bad. Although I do definitely agree that all these creams are adding to theburning, but when there's an infection, which is real, what choice do we have? I've gotover 12 years under my belt with this. I really feel we're like the "unknownsoldiers." And to top it off, if I don't feel disgusted enough, my husband is actinglike this is something new and he's getting tired and confused about what we have. HELLO,where have you been for 12 years. (Sorry about that. That was the conversation after thedoctor's visit last night). And to think -- before finding this site -- I used to keep allthis inside!
CommentTo Lois: when you have a yeast infection take an oral anti-fungal.
CommentI've posted a couple of time concerning my daughter who's relapsed after a couplereally good years. I'm posting now because I'm upset and angry and don't have anotherplace where people will understand. She just called after a return doctor's appt that shewaited weeks for to tell me the woman spent the entire visit screaming at her. Because shecame in asking the woman to consult with her previous doctor from whom she's moved away,the new doctor said she was being offensive. Because she asked for a prescription forsomething she'd read about the woman said she was being treated like a vending machine.The doctor told my daughter that she (the doctor) had breast cancer and might leave herown daughters motherless and therefore my daughter had nothing to complain about. Mydaughter said she sobbed the whole way through the appointment and was still sobbing whenshe came home and called. I DO NOT understand why, on top of everything else, so manydoctors are just so essentially unkind.
CommentTo another Karen: Your daughter's Dr. is unbelievable. I thought mine were bad. I hopeshe NEVER sees that Dr. again and I'm very sorry that she had to go through that. In myexperience, women Drs. are no more compassionate than male Drs. It seems like they havemore to prove. The Drs. I've been to haven't been necessarily unkind, but just uncaring.
CommentI was wondering whether any of you had an abscessed tooth prior to the onset of thisdisease? The reason I ask is that is what happened to me.
CommentHi everyone, Has anybody had any luck with any treatments for correcting the PH level of the vagina?I have been suffering with VVD and discharge for nearly 2.5 years. The discharge is causedby the vaginal ph level being too alkaline and not acidic. When there is no acidity,bacteria run rampant and this is causing my dreaded discharge. A Dr advised a peroxide douche but I am worried about how much this would sting - doesanybody know the dilution? I used pure peroxide on acne when I was a teenager and rememberit stung like hell so I don't want this effect down yonder. I have been using a cidervinegar/boiled water douche over the past few days and while it has decreased thedischarge, my VVD is burning more than ever. It seems like I can't win! One gets slightlybetter while the other gets worse. To AMY who posted a few days ago. Lately I feel exactly as you do about being so sickof it - it's on my mind most of the time and I am sick of trying to seek relief andnothing works. I bet everyone clearly remembers the time when they were not afflicted withthis! I am sorry to hear that you are afraid to have sex with your partner. Have you heardof a book called "A Woman's Guide to Overcoming Sexual Fear and Pain" by AJGoodwin and ME Agronin? It's very good. Keep on fighting,ladies!!!
CommentAlthough I think that doctor acted unprofessionally (and is probably in no condition topractice at all), let's not confuse her hysteria regarding her own diagnosis with anessential unkindness since we don't know what she's like when she's not recoiling from afatal test result. In fact, reading that entry helped me put things into perspective. Ioften feel like I might as well die if I can't have vaginal intercourse, but imagine beingin our shoes and having every doctor you meet tell you there's nothing they can do, exceptinstead of having pain forever you are going to die. If no one can help us, let's at leastremember it could be much, much worse. Is there anyone out there who would trade thisdisease for a slow, painful, and humiliating death in which treatments to postpone theinevitable were more painful than the disease itself? No way.
CommentTo the anonymous contributer above -- I am considerably calmed down today and, yes, Itake your point. Clearly the doctor was overwhelmed with her own tragedy and clearly hersituation is a tragic one.
CommentTo the Karen with the relapsed daughter: I am so sorry to hear that your daughter wastreated so badly. I was just curious...are you the same person that wrote a few weeks agoabout the daughter who at one time saw Dr. Cox at UCSB? If so, could you email me atslohman@jps.net? I would like to chat. I have suffered from VVD for 10 years and IT is sogreat to talk with people who finally understand what I am going through. Thanks.
CommentTo the lady who was suffering with constipation, I too have suffered with this problemfor years. Just recenetly, I have discovered that if I take a tablespoon of olive oil( iadd a lilttle bit of salt to the oil) in the morning and then another at night before I goto bed, get relief. After you have found some relief, just reduce the amount of olive oilto a teaspoon a day. I have tried laxatives, magnesium, all kinds of treatments, but the olive oil does thetrick. Try it, it might work for you.
CommentHello. I have just visited this sight for the first time this evening. I truly amamazed at how many sufferers of volvodynia and vestibulitis there are. It is veryencouraging to know that there are women out there who have recieved help for thisdisease. I am leaving tomorrow for Madison, WI. (A three hour drive from my home.) Icurrently see a wonderful doctor at the University Hospital. Her name is Barbara Oconnel.I was diagnosed with VV about 4 years ago. I am very fortunate to have a mild case. Dr.Oconnel has prescribed Diflucan (100 mg daily) and a low dose of an anti-depressant. Iremember my first visit with Dr. Oconnel. I had seen three doctors in my area. Althoughthey were great professionals who seemed very concerned about my care, they wereuninformed about this disease. I finally made an appointment (no referrals were offered bymy doctors) with a doctor at the Marshfield Clinic. After waiting three months to get in,the day before the appointment a nurse from Marshfield called to ask questions about why Iwas seeing the doctor. Within 10 minutes of the completion of our phone conversation, thenurse called me back and told me that the doctor in Marshfield wanted me to see a researchDr at one of our university hospitals. By luck, I chose Madison, which led me to DrOconnel. I remember my husband and I sitting with her that first day giving her my medicalhistory. After a very complete exam, she gave us a diagnosis and discussed with ustreatment options for VV. When she mentioned anti-depressants, I began to cry. I didn'tneed to be treated for depression. I am usually a very happy and opptomistic person. Ineeded treatment for this disease, not for depression. Fortunately, I have found somerelief using the diflucan and the anti-depressant. My symptoms do seem to follow mymenstrual cycle. Pain seems to be worse right before and sometimes during my period. I am very fortunate to have a supportive and caring husband. He is understanding ofthis disease and truly makes me feel like this is something we will fight together. Heknows as much as I do that this disease is just that...a disease. It is not in our heads.The pain is real. So many of us have many different symptoms and combination of symptoms that we haveexperienced. I am grateful to have found a place where I can share my triumphs andchallenges that come with this disease. I refuse to let it win. Life has too much in storefor me to give up. Tomorrow our two children, 8 and 11, and I are taking a break from the normal routineof our hectic schedules and making the annual roadtrip down to Madison, WI. I will postany new information I learn from Dr. Oconnel. Best of wishes to all of you. For those of you who feel like suicide is an answer...It isn't! You need to believe inthe power of hope. Surround yourself with those who you love and are loved by. Don't giveup! I know there is going to be great medical breakthroughs in the near future. Thisweb-site is one of the reasons I am confident there will be.
CommentTO THE PERSON WHO WAS USING SOME KIND OF ASTHMA MEDICATION (CREAM) Please email me about the name of the medication and what results you have had. Ihaven't tried it myself but I'm curious to know more about this treatment.
CommentHi Ladies, Just wanted to update you on the letters to Dr. Styler. She has Informed me that theyare coming in and she is very thankful that so many are writing. Please keep them coming.If you don't hace the address but want to write to Dr. Styler to tell her your experienceswith vulvodynia and the meds you have tried, to help her in her research with the drugcompany, shoot me an email and I'll send you the address. She informed me that she willwrite back to all the women who send her letters, so that she can update you when she hasmore information. Thanks, Lauren
CommentHi, I just read about a product that may help woman who also have Interstitial cystitisor find that their symptoms are made worse by foods high in acid. It reduces acid up to90%!! There research found that 70% of IC patients found a reduction in pain and urgency.My significant other is a urologist and has been researching this condition for me and istrying to find ways to give me relief and found this product in one of his journals.www.prelief.com The product is available at Walgreens and I am going now to buy some! Hopethis may help someone. Marie
CommentI notice that a lot of you seem to mention Difflucan. What is it and how does it work?
CommentHi Trace. Diflucen is prescribed for yeast infections. One pill. I'm on it now -- onlyI'm on my second pill. For most women one pill should do it. Although I see from otherpostings, some are given a regimen of it. It helps, but for me the infection will be back.My doctor started prescribing diflucen because the creams just weren't working any more,and I found the burning more intense with creams. I mean after 12 years of thisprescriptions just don't work anymore -- I feel you build up a resistence to them.
CommentI have not written in for a few months. I wanted to share some helpful tips from mylast doctors appt in April. I take 2 Citracals (Calcium Citrate) in the morning and twoaround 4:00 PM. I stopped taking all other vitamins. I have found this to be helpful. Iavoid eating & drinking certain foods - oatmeal, apple juice, strawberries, tomatos(and sauces), soda, orange juice, and chocolate. I also think avoiding too much sugarhelps. I take about 12 mg of amitriptyline at bedtime. I also use a sitz bath with burrowssolution 3 times a week. I got the solution at CVS, the name brand is Domesboro solution.It REALLY HELPS with the burning. Another thing I have recently done is switch back totampons. For about a year I didn't use them thinking they were the problem, but I feelthat the pads made the external burning much worse. I also only use Dove unscented soapand only Johnson and Johnson baby shampoo. I still only wash my all cotton underwear andpants in only hot water. I feel that any type of detergent makes the burning worse. Mydoctor has also given me premarin estrogen cream, but I have not tried it yet. I am doingso much better, but he says I should try a small amount rubbed on externally 3 times aweek. Has anyone else tried this? Even though I am not totally better, I guess I am afraidto mess with the relief I have. I'm sure you all understand. I am going to the VaginitisClinic at Temple University Hospital in July. Has anyone else seen Dr. Paul Nyrgesi there?Thanks and I hope my tips help.
CommentLadies-please write to the following person at lifetime tv. Let her know you are avulvodynia sufferer and write a brief description of the disease and your sysmtoms. Askher to write a piece for the website or put together a segment on one of the shows theyproduce. We have been in touch with her so she is the contact to send email to. The moreshe gets, the more pressure she will feel, to write or produce an on air segment. Get theword out-ladies! Write to Julie Williams-williamsj@lifetimetv.com. Good luck-happywritting. Lauren
CommentIn reply to Sharon from 4/29, and Amy from 5/22 a question-I too had rectal pain at thebeginning, and the doctor found and corrected a fissure, but he didn't think it wasanything big...He believes I also got it from straining, but I had back pain at the sametime as well. I also got a hemorrhoid at the same time, which he did not remove, but sincehave had pain in the vaginal area specifically when I bend or do something physical. Itfeels like a cut on your finger, and when you bend at the knuckle, it reopens. Over thecourse of the past year, I have had pelvic rehab with some success, but the pain has neverdisappeared. Does this seem to be similar to anyone's pain? At first I could manage itwith Ibuprofen, and the "cut-like" pain would be fine. But over time it hasdeveloped into burning and stinging. Lately it seems to be worse, more burning around the vagina and more sensitive to thepressures of clothes, sitting, etc. I am seeing a neurologist who doesn't know of v-dynia but he is now suggesting a series(maybe 3) of epidural (steriod I think?) to calm the lower spinal nerves. Has anyone elsetried this? It is costly (450$ each) but like everyone else I am at my wit's end. I am 33and have had this for about a year. Thanks for this great site and all your words ofwisdom. Hang in there. n.
CommentIs major irritation and bleeding after intercourse a symptom of vulvar vestibulitis?Also does it spread upward into the canal and uturan area? And how many women practicedoral sex before experiencing any symptoms.
CommentHas anyone had success with biofeedback after a REALLY long time (like beyond ninemonths) of doing the exercises? Did you just wake up one morning and it started gettingbetter? Did it last once you stopped (if you have yet)?
CommentHas anyone been told that vulvodynia is an autoimmune disease in which the patient isallergic to her own hormones?
CommentKaren and others, The autoimmune idea makes me wonder. I read in a back NVA news letter that reacting tosay, Monistat, and having an allergic reaction without getting better, is an autoimmuneproblem. This happened to me - the allgergic reaction to Monistat, even though I had usedit for years for y-infections in the past. Two weeks later I had vulvodynia. What is an autoimmune problem and what does the medical community do for it??? My theory is there is "something" that is correlating within all of ussomehow. Although we are all different and have different symptoms and stories, there issomething we all share that is allowing this to happen, for it is thought that vulvodyniais a symptom, not a disease. Now, what the problem really is that makes our vaginal areasreact this way is OF COURSE unknown. You know I go crazy because I have been exposed to so many of the potential"causes" that it makes me sick: chronic yeast infections bruised tail bone as a child been kicked in crotch by a boy asa child herpes 1 from oral sex with husband - the only person I have ever slept with - nooutbreak since have taken my fair share of anitbiotics over the years am fair skined wasvery athletic always have had irregular periods was on the pill for two years in my early20's - then stopped eat a lot of high oxalate foods, as most do used tampons used pads -used Always pads a lot have sat for years at various desk jobs mother has an underactivethyroid probably have an hormonal imbalance have always been rather "senstive"down there - never did the tight pant thing - still don't know how women do this... havebeen having oral sex with my husband for years have not have kids used Neutrogena in andon my vaginal area for years - was always sensitive to anything else reacted to condomlubricants or spermicide prone to constipation had malaria as a child and these are just off the top of my head I have always felt/been healthy, but to be hit with such a painful and undiscoveredsyndrome is unbelievable. It is hard to accept - not because I ever felt nothing wouldhappen to me, but rather because of the ever present pain. Most medical problems do nothave this ever present pain that is so difficult to treat and is so subjective. I know this is not a death sentence syndrome, but one can only play that head game forso long, because again, pain too is subjective and chronic vulvar and vaginal pain is tomany of us similar to a serious and bleek diagnosis. If we didn't feel pain and had toaccept that sex with our partners would be painful or impossible and that having childrenwould be difficult or impossible are both VERY hard, but likely BARABLE. However, to haveperhaps those nightmares PLUS constant and chronic vaginal pain (which I feel is virtuallyundescribable and maddening) is more than any women should have to bear and can at timesfeel like a form of slow death too. Of course none of us want cancer or to be told we havethat type of illness, but this syndrome cannot be downplayed in relation to ANYTHING, Ifeel, for it is a true beast of a problem and daily suffering is horrifying. I trust youall know what I am saying - if not so eloquently. Doctors still have no right to be belligerant like that to any of their patients and itis the cockyness and irritability like mentioned above, that can push some women with thisto suicide, for we have all contemplated it. Why doctors are so hostile towards thissyndrome is beyond me, but the ones who are not should be praised and admired, for theycan be rare. I want to implore all of the women out there who have spouses in the medical field whoare trying to help us - they may be our best hope because they love a sufferer. Why this problem has not been taken more seriously, baffles me, for it is SO painfuland SO destructive to the female psyche and soul. Just sharing my thoughts...
CommentDoes anyone know of doctors in the Atlanta, Georgia area who are familiar with this andwhom you might recommend? What about Libby Edwards in Charlotte NC? Is she an ob/gyn?Thanks.
CommentTo the person looking for a doctor in Atlanta--I'm from Atlanta, but live in Athensnow. I have yet to find a good doctor myself, but I can certainly give you a long list ofdoctors NOT to see. I just heard about a vulvar specialist at Emory University, I can'tremember her name right now, but if you email me, I'll send it to you--I"m planningto make an appointment with her myself. Good Luck!!!
CommentLibby Edwards is reputed to be a top doc in this area, but there's a year wait to seeher. Marilynne McKay used to be at Emory, but has retired. One of the problems with thisdisease is that there are so few knowledgable specialists and the wait to see them is solong.
CommentI reside in Denver Colorado. I have been living with this nightmare now for about ayear. I have often thought of killing myself over this.Benedryl definately helps toreleive my symptoms. And recently I had purchased some vitamin A. I take them orally, andlast night I broke the A capsule and applied the oil to the vulva. This seemed to help,butas we all know we have good days and bad days. I've been on the diflucan now for 2 months.I also see a mental therapist once a week to try and cope.Adovan, an anti anxietymedication seems to help control the "outbreaks", and I have recognized thatanxiety plays a major role in vv.My next step is to try accupuncture, and pelvic floorrehabilitation.My last relationship was ruined by this, and I am so scared,becauserecently I met the most wonderful,wonderful man in the world(I'M 28,buy the way). I doneknow how th present this ti him other than having him log on to this website.I am so sadthat I have this and I truly understand when the other writers say that they are goingcrazy, and to please help.Sometimes I give up hope.It also seems like many of us were onaccutane at one point in our lives, and definately the antibiotics and birthcontrol pillshad something to do with all of this.My psychotherapist says that its an anxiety disorder,and she calls the flare ups breakthrough anxiety.That is why she is treating me foranxiety, and she suggested takinf the benedryl,because when I panic she feels thathistamined are being released to that area, and I have to say that these have beenhelpful.Has anyone truly experienced much luck with accupuncture,or biofeedback?Pleasewrite to me.I need you support,all of you.You're the only one's that keep me going.In themeantime,I'll be praying for us. Sincerely,marybatesko@hotmail.com
CommentThis is a reply to Susan's entry on 5/26/00. My name is Karen. I would be interested infinding out more information about the vaginitis clinic at Temple University. I was apatient of Dr. Howard Kent who was killed in a car accident about 2 - 3 weeks ago. Theonly referral I received was for Dr. Nurijesy. I have an appointment set for September (It was the soonest I could get). Could you please e-mail me at the above email address? Ilike you have applied much of what you described. I have found some relief but no totalelimination of the pain. I would be very interested in corresponding with you if itatleast to get information on the clinic. Karen
CommentHello my miserable company, Here's my sob-story: I found out in December of '99 (now it's almost June, 2000) that Iwas pregnant. I'm 23, and just getting started in my career. My boyfriend was supportivebut would rather have gotten rid of the baby. I was brought up Catholic, so I had majorissues with it. In the meantime, sex was very painful and I associated it with thepregnancy. To my great relief, I found out that the baby had miscarried on it's own and Ihad to have a D&C (dialation and cutterage) surgery to remove fetus and other stuffthat comes with pregnancy. When I was able to have intercourse again, it still hurt. Afterundergoing all the tests to rule out infections or yeast or cancer, my doctor diagnosed mewith vulvar vestibulitis. I did a little research. I came home crying to my boyfriend and said I wouldn't blame him if he wanted to leaveme now. He didn't but we both feel the frustration every day. I've tried the steriodcreams (Clobetasol, etc.) and Lotrisone, the low-oxylate thing, etc. and no results,sorry... I've read a bit about hormonal therapies, though I have not tried them. My logic isthat since it started with a big hormonal change, maybe it will end that way? If anybodyelse has had any similiar experiences, or has had any success with hormonal creames oranything, please email me at soleilmeilanikeoni@yahoo.com Good Luck, Kati
CommentHello fellow sufferers! Well, I have read some people use Vitamin A, but Vitamin Eworks pretty good, I purchased a small bottle of E oil 28,000 IU, and massage it in atnight about 2 times a week, I have felt some relief! Try it, it only costs about $7 and Igot it at the grocery store!! Also, absolutely NO soap down there!!! That has helped alongwith Tide Free!! I see others use this method also, and chemicals do make it worse, as doLubrications. Has anyone tries the CRISCO??? Just curious, let me know, is it hard toremove?!? I have an aloe plant, I think I will try that! Thanks to everyone who haswritten! Don't give up hope, have Faith.
CommentA few months ago, I posted my long story about my experience with Vulvodynia. I have afew specific questions. Does anyone out there suffer from small cut-like irritations on the external parts ofthe vulva. If so, what treatment do you find successful? I'm hestitant to use any cream asit might make my symptoms worse. Does anyone suffer from frequent urinary tract infections? I also suffer from chronicyeast infections and I think I might benefit from taking Diflucan regularly. Has anyone found acupuncture treatments helpful? If so, what kind? Does anyone have any insight into the Rife machine treatment. I did some research onthe internet and it sounds promising, almost too good to be true. Where do I find someonewho practices Rife treatment in St. Louis, Missouri. And last but not least, does anyone know good Ob-gyns in St. Louis that areknowledgeble about vulvodynia. Thanks, keep up the good work. This site is wonderful.
CommentNICKI, You may want to look into pudendal nerve blocks or anti-depressants that numbthe nerves in that area. I had a fissure that was corrected by surgery and hasn't comeback since. I think your original symptoms may have damaged some nerves. If you still feellike you have a cut that reopens, your fissure may have come back. But my burning andstinging has been considerably relieved with pudendal nerve blocks. Anti-depressantsshould be tried first. I hope that helps! About AUTO-IMMUNE disorders. I believe that my vulvodynia is a symptom of anauto-immune disorder. I have anti-thyroid antibodies and a high level of speckled ANA.These are both related to known auto-immune disorders. However, I don't have symptoms ofany of the common auto-immune disorders. If you're tired all the time or have joint painlike me, this may be your problem. Food allergy testing and synthroid may help you feelbetter. I'm still convinced that the VVS is definitely due to an auto-immune disorder. Ihave a doctor who tests for allergies to HORMONES, but I was not allergic to those. Itmust be something else in my body I'm allergic to I think. Well, anyone else feel thisway?
CommentNICKI, You may want to look into pudendal nerve blocks or anti-depressants that numbthe nerves in that area. I had a fissure that was corrected by surgery and hasn't comeback since. I think your original symptoms may have damaged some nerves. If you still feellike you have a cut that reopens, your fissure may have come back. But my burning andstinging has been considerably relieved with pudendal nerve blocks. Anti-depressantsshould be tried first. I hope that helps! About AUTO-IMMUNE disorders. I believe that my vulvodynia is a symptom of anauto-immune disorder. I have anti-thyroid antibodies and a high level of speckled ANA.These are both related to known auto-immune disorders. However, I don't have symptoms ofany of the common auto-immune disorders. If you're tired all the time or have joint painlike me, this may be your problem. Food allergy testing and synthroid may help you feelbetter. I'm still convinced that the VVS is definitely due to an auto-immune disorder. Ihave a doctor who tests for allergies to HORMONES, but I was not allergic to those. Itmust be something else in my body I'm allergic to I think. Well, anyone else feel thisway?
CommentI am moving across country to the San Francisco area. I was wondering if anyone knew ofa good doctor in that area.
Commentith estrogen use do not occur. I have had MANY other treatments.....MANY....but this isthe first time that a gynocologist has suggested...with CONFIDENCE that it would ease thevulvodynia symptoms I experience. Please share any information.
CommentAMY, do you suffer from VVD as well as the VVS? I only ask this because I too am tiredall the time and have joint pain (admittedly the joint pain only occurs when it is cold).I also have very bad allergies (allergic to pollens, dust-mite & cockroach!) and haveeczema. These allergies are also tied in with the auto-immune system and I don't thinkmine is very good! Thanks, Leanne
CommentTo ann- I am from st. Louis. Please email me and I will give you the name of my doctor.
CommentI posted once before (several guestbooks ago). But there have been some recent postingsI would like to repond to. Amy--like you I have a high ANA (1:2500) with a speckledpattern. Also anti-thyrogobulin antibodies. I wonder if there is a connection? Beforegetting vulvar pain, I was dx with lichen simplex, which itched like crazy. Prescriptioncortisone cleared it up, but a year later the vulvodnia started. I also have irritablebowel syndrome. I don't suffer from constipation (actually, the opposite), but I havenoticed that for a couple of hours after having a BM the pain goes away. (But it alwayscomes back!) I also get a lot of bladder infections. I've been told I have chronicurethritis. I think vulvar tissue and urethral tissue are the same, so it's notsurprising, I suppose. Finally, Leanne, I would strongly recommend that you avoid theperoxide douche. Last year I got a bacterial infection, and I used peroxide diluted 1:10with water, and it still burned like fire. My vulvadynia symptoms flared up bad for acouple of weeks afterward.
CommentAnn 6/1: I have external cuts on the vestibule area almost everytime I haveintercourse. I actually showed my gyno. this and she perscribed Premarin, an estrogencreme. It has been a great help for me. However, if I miss one or two treatments it islike starting all over again. Good luck.
CommentTo Mary 5/30 I have also taken accutane and I was on anti-biotics for bladder infections from age 2to 13. I also had several surgeries to stretch a tube in my bladder as a child. I didn't realize until I read your entry that accutane is a common link. Has anyoneelse out there have taken accutane? To the person interested in rifing - I have been reasearching it and I know that it hascured Beth (she originally left an entry on it). I have spoken with her and she is stillbetter after two months. I believe that doctors can not legally use the machines, but youmay want to call an accupuncturist or other professionals into natural healing. Beth saysshe used the machine on her own and ran her about 15-20 different frequencies through herbody that supposedly kill toxins, yeast, viruses etc. As soon as I find out more info I will post or please feel free to email.
CommentQUESTIONS??? Sorry if this sounds gross but, does anyone else have a small spottingthroughout the month as well as all the other common vulvodynia symptoms? Also, has anyonehad trouble becomming pregnant, due to the pain factor? My doctor just mentioned thatinvitro might be an option. All you suggestions are of great help.
CommentI have been diagnosed with vulvar vestibulitis, and I am still trying to learn as muchas I can about this. I have a doctors appointment on 6-7, and I would like to ask as manyquestions as possible, but I do not know what to ask. I am on Estrace, a topical steroid,and I am taking sitz bathes once a day. The surgery has been mentioned, and I will do itif my doctor will do it. I want to know as much as possible before I go the the doctor on6-7-00, so if anyone will email me and give me insight I would appreciate it. THANKS TO ALL WHO CONTRIBUTE TO THIS WEB SITE, IT REALLY IS HELPING ME TO LEARN ABOUTTHIS ILLNESS. GOOD LUCK TO ALL. Also, if anyone wants to just talk, email me. We are all in this together. Thanksladies. ~Crystal~
CommentIt has taken me many years to figure out many of the things that were causing me somany problems. I finally wrote all my problems down in a lenggthy letter to the 3rd gynodoc i was fixing to see. i had been treated for years for chronic yeast infec. he read myletter and said i think i know what your problem is vulvodynia. he gave me the options ofinterferon or surgery. advising surgery. the surgery has helped tremendously. realizingthough that alot of problems creating the symtoms are tampons!!! the food i eat walnuts,strawberries, rough toilet papers, riding a lawnmower seual intercourse 2 days in a row.the help of soda douches!! however this problem has created a very real problem in mymarriage. my husband had to have a circumcision due to the damage of the skin due tochronic yeast infections or could it be from the vulvodynia? i have had many years ofmisery with this conditions thanks to the doc that knew what was going on i'm much better.
CommentSorry to anyone who attempted to figure out my recent posting...don't know whyit nevercame through completely. I am nearing my First anniversary with Pudendal Neuralgia. Mypast letters have reviewed some of the Many therapies and procedures but my most recentexperience is something I would like to share with anyone who may be interested. A recentvisit to a wonderful Dr. led me to question the use of what seems to be a fairly newtreatment with estrogen therapy. He suggested the use of an ESTROGEN RING that is insertedvaginally(like a diaphram)and stays in place for three months. He is CONFIDENT that thisLOCALIZED estrogen therapy would release just the right amount of estrogen to calm thearea of the vulva,labia, rectum and anus.....and whatever the hell else HURTS downthere....ALL OF THE TIME. Has anyone heard of this or tried it? I just underwent surgeryto cut out scar tissue and restore the vaginal canal to its' pre-HYSTERECTOMY state. Rightnow he has me using Premarin cream inside and outside of the vagina as a healing treatmentin that area. Any thoughts? To all of the women questioning(and that must include each andEVERYONE of you), what we can do to be HEARD, I understand your frustrations andconstantly ponder the same question. My husband is a physician and hundreds of other womenare related to doctors....and its clear to me, as someone who has the ability to see anydoctor anywhere at anytime....that there is NOWHERE to GO! Other than staging a rally..aprotest of sorts....to OPEN EYES that perhaps could help us, I'm not sure what choices wehave. Is there a time or place that Mrs. Clinton is expected to be....speaking aboutmedical issues, where we could stage a VERY LOUD and VISIBLE MEETING(SIGNS ANDLOUDSPEAKERS,petition etc...Dr's. signatures included).? Could enough YOUNG...under 40women(I"M 40,SO please don't be offended) write to Lisa LING, on ABC's THEVIEW,letting her know about this disease and appeal to her, as a FELLOW YOUNG WOMAN to doa segment or be OUR representative(PUBLIC) as a spokesperson for VULVODYNIA. How do weknow that SOMEONE she knows personally doesn't have vulvodynia. What if she actually meetssome of these women personally to LISTEN to their cries for help. Perhaps you have abetter idea of a PUBLIC figure who could support our cause and become a VOICE for us outthere. How about a woman who ACTS on one of the MEDICAL T.V. shows...know of any? Let'sfind a way to brainstorm and of course,continue to help each other at the same time. Whydon't we show up in numbers at various Pelvic pain conferencesand related medicalconferences....eucate the doctors and related professionals. Where are the BIG SHOTphilanthropists who want some noteriety? I know they are out there. Just mentioning theirnames and associating those names with the cause of VULVODYNIA should raise someone"santennae to our plight. I hope that we can find something NEW TOGETHER. I don't want towrite to you again on my second anniversary with Vulvodynia.....I have BETTER THINGS to dowith my life.....DON'T YOU????????????
CommentAfter five years of suffering from chronic vulvar pain due to muscular tension in thevaginal pelvic area I have finally found a doctor who identified the culprit. Theligaments were not supporting the pelvic region. In my case the ligaments in the the pubicsymphysis,&sacroiliac joint were extremely lax. The physical medical doc that made thediagnosis treated me with a procedure called prolo therapy. The doctor injected me in thetender places with an injection of dextrose, B-12and anesthetic. This combinationsimulates a chemical injury in the body that causes the tissue to rebuild itself . Newcells are prolifierated. If there are others like me who received some relief but not fullrelief from biofeedback and physical therapy pelvic floor rehab, this could be your ticketout of pain too. I have my life back now as a result of this treatment. If you areinterested in more info, I'll be happy to share with you. You can also do a search underprolo therapy on the Internet to find several sites on this procedure. Although it doesn'tclearly address vulvodynia, the research show that lax ligaments in the sacroiliac andpubic region refer pain directly to the vagina. Word of mouth about this treatment isslowly leaking out. However, if you're still searching for answers it is worth lookinginto. It certainly gave me my ticket out. My hope is that everyone will be delivered fromthis chronic condition. I'll be happy to share more with anyone who is interested. I amrecovered to the point that I get to go river-rafting with friends in two weeks. Ofcourse, it is a blessing to have the opportunity to be intimate with my husband on aregular basis. Take care. Maryann
CommentJust thought of CHELSEA CLINTON or Tipper Gore.....there is a definate emotionalcomponent to our pain...as a RESULT of our pain and frustration, and she is the mentalheath spoksperson of this country. Also, most of us use ANTI DEpressant medication as partof our treatment and I bet Mrs. Gore would be INTERESTED to know and hear MORE about thisusage of these medications that everyone associates EXCLUSIVELY for mental health..WE needto educate EVERYONE!!!!! Who better to talk about and teach others about vulvodynia andthe treatments that DON't WORK....US!!!!!! suggestions? Comments? Anyone??//
CommentI FOUND IT!!!!!!!!!!!!! The June issue of the Magazine SELF has given us an opening interms of getting some NEWS out to the masses. In this issue, there is an article aboutGynocological scares and two of them have to do with VULVODYNIA. One is from a woman whohas Lichen Sclerosis and the other woman has Vestibulitis. If any of you are prepared torespond to the article, I was thinking that if a lot of us write in to the section thatprints LETTERS FROM READERS, and also write to SELF's website with short bios and refer tothe need for HELP from the medical community and also BEG for a PUBLIC FIGURE(we caninclude this in our LETTERS to the magazine....maybe a celebrity will be a READER too!)torepresent our cause. If we make it clear that this disease takes so many differentformsi.e. it can be a skin condition,allergy,neurological, diet,STD related....problem,then we have more of a chance to attract women out there and EYES and ears that will besympathetic to this issue.It may be difficult for some to discuss or be outspoken about anissue that seems to be so PERSONAL and/or private in nature. LET"S TALK ABOUTIT>>>>LOUDLY!!!!!!!!!!!!EVENTUALLY, someone will listen. I know for sure thatevery physician wants his/her day(s) of fame....let's give them the opportunity to befamous for CURING our SELVES. E Mail: SELF.COM to share your BIOS. and send letters torespond to the article to:letters@self.com or write: Self magazine 4 Times Square 5thfloor New York, N.Y. 10036 or fax: 800-228-7353 Include your name address and phone numberwhere Self magazine can reach you. Remember, if you choose to remain annonymous, nobodywill be able to locate you or HELP you....or US. Thanks Ladies.
CommentHas anyone tried swimming (in a chlorinated pool?) for exercise? I wonder if thechemicals might irritate me further, but at the same time exercise seems to be the oneconsistent thing that gives me good relief... As I have a lower back problem, I would liketo take up swimming again instead of just walking, but am afraid of the chlorine. Anycomments? I, too, thank you all for this sharing, caring web book. nicki
CommentHi I hope all of us are going to write to Self magazine. We need to get as muchinformation out there as we can. I am sure there are thousands of women suffering withvulvodynia but have never told any one or have given up trying to find out what they have.If we can get more people aware of this condition we may be able to force the medicalcommunity to find a cure.
CommentIs there anyone living in the Savannah Ga area that is having any problems with vulvarvestibulitis? If so, I just want to know what Dr you are using. Also, thanks for postingthe names of books and magazines that speak of these issues. It helps to know that peopleare more and more alert of this illness.
CommentI want to cross my legs again; I want to be able to sit through a movie withoutfussing; I want to go bike riding again; I want to wear stockings, underwear and skirtsthat aren't down to my ankles; I want to wear jueans again; I want to go the doctor ONCE ayear for my regular checkup; I want to wash me and my clothes with any soap that's on saleagain, I want to make love to my husband without the burning, pain, or getting aninfection; I want to laugh and be happy again, I want to go back 12 years and be me againI want to know what went wrong. I want to know how to fix it.  |
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