Guest guest Posted January 8, 1999 Report Share Posted January 8, 1999 Dear I too am mostly a lurker...... more because i type with two fingers and it takes me so long to write a post ..... So i read and read and cry sometimes at the pain that we are all in ....... AS im writing this im sitting here in more pain then i have been in in a long time... This flare is really starting to tear me apart .. I 'm at my wits end .. the worst of it is i;m going in for A possable hystermectomy on tues .. i'm am so scared that they are going to fing something ... and i don't know what i will do if i have to go on antibotics ... almost all the things that have happened to you have happened to me i felt like i was reading my own story.. what you should do is come in every once in a while if you need to talk ... It really helps well don't stay away long... Jeannette Sythe wrote: > > > Okay, Heidi, you've brought me out of the woodwork with your urge for > lurkers to post. I wasn't going to post at all because I'm not going to > stay on the list. It's more email than I can handle, even with the digest, > and my vulvodynia as such is not a big problem for me now. I also joined > the old vulvodynia list long ago, but quit soon for the same reason. I'll > stay on until next Tues. (after that I'll be travelling), and I'll tell my > story now in case it is helpful to anyone. > > My vulvodynia started almost 23 years ago (I'm 48), immediately after > childbirth, with one small sore spot, a little pain with sex, not a big > deal. In retrospect, I think it was minor nerve damage. Then I started > having yeast infections. Also took antibiotics 5 or 6 times, and nobody > told me they cause yeast infections (I've refused all antibiotics for about > 15 years now). After 3 years, the " yeast infection " wouldn't go away. I > was constantly treating it, and it took me a long time to realize I had > become hypersensitive to yeast medications. A longer time to realize I was > hypersensitive to basically everything. After another 5 years or so the > yeast infections went away, and I haven't had one in about 15 years. > > For many years I had various degrees of pain, itching, infections (including > trichomonas once, staph once, and probably herpes), sore spots, etc. It > settled down a little when I stopped using soap and even tap water. I used > distilled water only (was sensitive to " purified " water), and didn't shower > often, to minimize exposure. I was mostly functional, and managed to keep > working. Eventually, maybe 8-10 years ago, it calmed down enough that it > didn't hurt all the time except during flare-ups (and always during sex, but > not always badly). My worst problem was some very uncomfortable mights > unable to sleep feeling like I had to pee. > > Then about 4 years ago that urinary " urgency " symptom took over. It became > very intense 24 hours a day. Medicine helped for a few months, then didn't > help. I became nonfunctional for months, couldn't sleep, couldn't work, > extreme discomfort all the time. I wasn't sick, felt fine otherwise, and it > wasn't pain, just intense discomfort. Since then it's slowly gotten better > and some months I feel almost normal. Meanwhile, I can now wash with tap > water and shower as often as I want. I still have the original sore spot, > but the vulvodynia per se is mostly gone. > > My urinary system appears to be normal despite my symptoms. And I realized > at the worst of the urinary symptoms that the sensation had moved from the > urethral area to the clitoris. Meaning, my doctor and I think, it appears > to be a pudendal nerve problem (the pudendal nerve has many branches and > nerve endings). > > So, in hindsight, I had nerve damage during childbirth, yeast infections at > least partly caused by taking antibiotics, and local chemical > hyersensitivities caused by overexposure. Also I was exposed to DES (a drug > my mother took while pregnant with me) and I wonder if that caused my > tissues to be susceptible somehow. And I still have a nerve problem, but I > can live with it for now. > > Through all this, I never got much help from doctors, and I've been to many. > Vulvodynia wasn't recognized 20 years ago, so I got a lot of doctors > thinking the problem was all in my head, except when they could identify an > organism, but I was stil a hysterical female because I got emotional in > their offices. One doctor, a woman, came out and said my problem was all > psychological and I needed to go to a sexual dysfunction clinic. A few > realized it was a physical problem, but nobody could help. I figured out > the hypersensitivity and what to do about it by myself. Luckily, by the > time one doctor said I had HPV and needed laser surgery, I knew that I > should avoid any more invasive treatment and found an expert, who found I > didn't have HPV. I went to the expert again when my current doctor wanted > to do laser surgery for " dysplasia, " and avoided that too (my doctor > recommended the expert and concedes to his opinion). > > I'm not saying nobody should have surgery, but I've heard more than a few > stories of women damaged by unnecessary invasive procedures. Doctors are > eager to do *something*. I'm sure the tricyclic antidepressants help > people, and are worth a try for many, but I took one dose of Elavil and it > knocked me out--I'd have to be in real bad shape to try again. Never tried > the low-oxalate diet, but I am unable to take Vitamin C (major flare-up) and > I mostly avoid citrus fruits and other acidy foods. Haven't been able to > establish a connection with any other foods, except some Chinese medicine an > acupucturist gave me (acupuncture didn't help a bit, and the pills caused a > major flare-up). > > Anyway, it looks like " vulvodynia " is a catch-all for a number of conditions > with similar symptoms and different causes. So any " cure " or helpful hints > will only apply to some of us. > > Heidi, I think you're doing a great service my maintaining this email list, > and doing an excellent job with it. Your viewpoint is reasonable, tolerant, > and caring. All this despite your health problems--I'm in awe. Thanks. And > everyone else--what a brave bunch of women--having so much trouble, and > reaching out not only for help but to help each other. I wish I'd had this > resource when I first had the problem. I never even knew anyone else had > anything similar. > > -- > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 1999 Report Share Posted January 9, 1999 I'm so sorry you are in so much pain. Please tell us more about your situation if you can manage. Thinking of you, Carolyn Re: Intro > > >Dear I too am mostly a lurker...... more because i type with two fingers and it takes me so long to write a post ..... So i read and read and cry sometimes at the pain that we are all in ....... AS im >writing this im sitting here in more pain then i have been in in a long time... This flare is really starting to tear me apart .. I 'm at my wits end .. the worst of it is i;m going in for A possable >hystermectomy on tues .. i'm am so scared that they are going to fing something .. and i don't know what i will do if i have to go on antibotics .... almost all the things that have happened to you have happened >to me i felt like i was reading my own story.. what you should do is come in every once in a while if you need to talk ... It really helps well don't stay away long... > Jeannette > > Sythe wrote: > >> >> >> Okay, Heidi, you've brought me out of the woodwork with your urge for >> lurkers to post. I wasn't going to post at all because I'm not going to >> stay on the list. It's more email than I can handle, even with the digest, >> and my vulvodynia as such is not a big problem for me now. I also joined >> the old vulvodynia list long ago, but quit soon for the same reason. I'll >> stay on until next Tues. (after that I'll be travelling), and I'll tell my >> story now in case it is helpful to anyone. >> >> My vulvodynia started almost 23 years ago (I'm 48), immediately after >> childbirth, with one small sore spot, a little pain with sex, not a big >> deal. In retrospect, I think it was minor nerve damage. Then I started >> having yeast infections. Also took antibiotics 5 or 6 times, and nobody >> told me they cause yeast infections (I've refused all antibiotics for about >> 15 years now). After 3 years, the " yeast infection " wouldn't go away. I >> was constantly treating it, and it took me a long time to realize I had >> become hypersensitive to yeast medications. A longer time to realize I was >> hypersensitive to basically everything. After another 5 years or so the >> yeast infections went away, and I haven't had one in about 15 years. >> >> For many years I had various degrees of pain, itching, infections (including >> trichomonas once, staph once, and probably herpes), sore spots, etc. It >> settled down a little when I stopped using soap and even tap water. I used >> distilled water only (was sensitive to " purified " water), and didn't shower >> often, to minimize exposure. I was mostly functional, and managed to keep >> working. Eventually, maybe 8-10 years ago, it calmed down enough that it >> didn't hurt all the time except during flare-ups (and always during sex, but >> not always badly). My worst problem was some very uncomfortable mights >> unable to sleep feeling like I had to pee. >> >> Then about 4 years ago that urinary " urgency " symptom took over. It became >> very intense 24 hours a day. Medicine helped for a few months, then didn't >> help. I became nonfunctional for months, couldn't sleep, couldn't work, >> extreme discomfort all the time. I wasn't sick, felt fine otherwise, and it >> wasn't pain, just intense discomfort. Since then it's slowly gotten better >> and some months I feel almost normal. Meanwhile, I can now wash with tap >> water and shower as often as I want. I still have the original sore spot, >> but the vulvodynia per se is mostly gone. >> >> My urinary system appears to be normal despite my symptoms. And I realized >> at the worst of the urinary symptoms that the sensation had moved from the >> urethral area to the clitoris. Meaning, my doctor and I think, it appears >> to be a pudendal nerve problem (the pudendal nerve has many branches and >> nerve endings). >> >> So, in hindsight, I had nerve damage during childbirth, yeast infections at >> least partly caused by taking antibiotics, and local chemical >> hyersensitivities caused by overexposure. Also I was exposed to DES (a drug >> my mother took while pregnant with me) and I wonder if that caused my >> tissues to be susceptible somehow. And I still have a nerve problem, but I >> can live with it for now. >> >> Through all this, I never got much help from doctors, and I've been to many. >> Vulvodynia wasn't recognized 20 years ago, so I got a lot of doctors >> thinking the problem was all in my head, except when they could identify an >> organism, but I was stil a hysterical female because I got emotional in >> their offices. One doctor, a woman, came out and said my problem was all >> psychological and I needed to go to a sexual dysfunction clinic. A few >> realized it was a physical problem, but nobody could help. I figured out >> the hypersensitivity and what to do about it by myself. Luckily, by the >> time one doctor said I had HPV and needed laser surgery, I knew that I >> should avoid any more invasive treatment and found an expert, who found I >> didn't have HPV. I went to the expert again when my current doctor wanted >> to do laser surgery for " dysplasia, " and avoided that too (my doctor >> recommended the expert and concedes to his opinion). >> >> I'm not saying nobody should have surgery, but I've heard more than a few >> stories of women damaged by unnecessary invasive procedures. Doctors are >> eager to do *something*. I'm sure the tricyclic antidepressants help >> people, and are worth a try for many, but I took one dose of Elavil and it >> knocked me out--I'd have to be in real bad shape to try again. Never tried >> the low-oxalate diet, but I am unable to take Vitamin C (major flare-up) and >> I mostly avoid citrus fruits and other acidy foods. Haven't been able to >> establish a connection with any other foods, except some Chinese medicine an >> acupucturist gave me (acupuncture didn't help a bit, and the pills caused a >> major flare-up). >> >> Anyway, it looks like " vulvodynia " is a catch-all for a number of conditions >> with similar symptoms and different causes. So any " cure " or helpful hints >> will only apply to some of us. >> >> Heidi, I think you're doing a great service my maintaining this email list, >> and doing an excellent job with it. Your viewpoint is reasonable, tolerant, >> and caring. All this despite your health problems--I'm in awe. Thanks. And >> everyone else--what a brave bunch of women--having so much trouble, and >> reaching out not only for help but to help each other. I wish I'd had this >> resource when I first had the problem. I never even knew anyone else had >> anything similar. >> >> -- >> >> ------------------------------------------------------------------------ >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 1999 Report Share Posted April 22, 1999 Stacie, After reading your post I'm reconsidering Estrace cream. You are so young to have endured so much. It's interesting that your flare was at Christmas. The high oxalolate foods may have contributed, and you can almost be sure that stress did. Holidays do have stress. Not necessarily negative stress, but definitely stress. Thank you for sharing your story. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 1999 Report Share Posted April 22, 1999 Stacie, After reading your post I'm reconsidering Estrace cream. You are so young to have endured so much. It's interesting that your flare was at Christmas. The high oxalolate foods may have contributed, and you can almost be sure that stress did. Holidays do have stress. Not necessarily negative stress, but definitely stress. Thank you for sharing your story. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 1999 Report Share Posted April 22, 1999 Welcome Stacie- I too am a new member and I am just so relieved, in a weird way, to find I am not alone. I truly hope your treatment is successful. Stacie S. wrote: > I know this was long, I'm not usually so loquatious, but this isn't a story > that is appropriate to tell in most settings, you know? It feels good to > have a place to talk about it. You know, it was practically getting to the point where I felt like telling anyone who would listen. And now that Ive found this list, I see how important it is to tell as many people as possible. I'm blessed with a virtual inabilitiy to be embarassed, and not everyone is going to feel like doing this. But Ive told my father, and I'm about to tell a friend of ours (my husband's and mine) since I know it will be on my mind and I won't feel like hiding it. Anyone who can stomach the embarassment *others* might feel at hearing it should take courage and tell the story. But yes of course, it doesnt seem or feel appropriate in most settings, and , sadly, sometimes not even at the gyn's. My gyn's acted like my inability to have sex was just some minor inconvenience. Charming, isnt it? Believe me, they are going to hear from me about this. I am not going to them anymore and they will receive an unemotional factual letter expressing the unacceptability of the fact that a practice with their reputation should have been so uninterested in getting to the root of my problem, while cheerfully charging me for increasingly " complex " visits, which lasted about 5 minutes. Rant. Grunt. Snort. (deep breath) And all I wanted to do was make you feel welcome. Sorry Stacie!!!! > _______________________________________________________ > Get your free, private email at http://mail.excite.com/ > > ------------------------------------------------------------------------ > Did you know that knowledge is power? > http://www.ONElist.com > Join a new ONElist e-mail community and strengthen your mind! > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 1999 Report Share Posted April 22, 1999 Welcome Stacie- I too am a new member and I am just so relieved, in a weird way, to find I am not alone. I truly hope your treatment is successful. Stacie S. wrote: > I know this was long, I'm not usually so loquatious, but this isn't a story > that is appropriate to tell in most settings, you know? It feels good to > have a place to talk about it. You know, it was practically getting to the point where I felt like telling anyone who would listen. And now that Ive found this list, I see how important it is to tell as many people as possible. I'm blessed with a virtual inabilitiy to be embarassed, and not everyone is going to feel like doing this. But Ive told my father, and I'm about to tell a friend of ours (my husband's and mine) since I know it will be on my mind and I won't feel like hiding it. Anyone who can stomach the embarassment *others* might feel at hearing it should take courage and tell the story. But yes of course, it doesnt seem or feel appropriate in most settings, and , sadly, sometimes not even at the gyn's. My gyn's acted like my inability to have sex was just some minor inconvenience. Charming, isnt it? Believe me, they are going to hear from me about this. I am not going to them anymore and they will receive an unemotional factual letter expressing the unacceptability of the fact that a practice with their reputation should have been so uninterested in getting to the root of my problem, while cheerfully charging me for increasingly " complex " visits, which lasted about 5 minutes. Rant. Grunt. Snort. (deep breath) And all I wanted to do was make you feel welcome. Sorry Stacie!!!! > _______________________________________________________ > Get your free, private email at http://mail.excite.com/ > > ------------------------------------------------------------------------ > Did you know that knowledge is power? > http://www.ONElist.com > Join a new ONElist e-mail community and strengthen your mind! > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 1999 Report Share Posted April 22, 1999 Welcome Stacie- I too am a new member and I am just so relieved, in a weird way, to find I am not alone. I truly hope your treatment is successful. Stacie S. wrote: > I know this was long, I'm not usually so loquatious, but this isn't a story > that is appropriate to tell in most settings, you know? It feels good to > have a place to talk about it. You know, it was practically getting to the point where I felt like telling anyone who would listen. And now that Ive found this list, I see how important it is to tell as many people as possible. I'm blessed with a virtual inabilitiy to be embarassed, and not everyone is going to feel like doing this. But Ive told my father, and I'm about to tell a friend of ours (my husband's and mine) since I know it will be on my mind and I won't feel like hiding it. Anyone who can stomach the embarassment *others* might feel at hearing it should take courage and tell the story. But yes of course, it doesnt seem or feel appropriate in most settings, and , sadly, sometimes not even at the gyn's. My gyn's acted like my inability to have sex was just some minor inconvenience. Charming, isnt it? Believe me, they are going to hear from me about this. I am not going to them anymore and they will receive an unemotional factual letter expressing the unacceptability of the fact that a practice with their reputation should have been so uninterested in getting to the root of my problem, while cheerfully charging me for increasingly " complex " visits, which lasted about 5 minutes. Rant. Grunt. Snort. (deep breath) And all I wanted to do was make you feel welcome. Sorry Stacie!!!! > _______________________________________________________ > Get your free, private email at http://mail.excite.com/ > > ------------------------------------------------------------------------ > Did you know that knowledge is power? > http://www.ONElist.com > Join a new ONElist e-mail community and strengthen your mind! > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 1999 Report Share Posted April 22, 1999 Hi Stacie, I am so glad you shared your story. You are the only person I recall in the eight years that I have suffered with vulvar pain whose onset sounds similar to mine. My pain also started during a pregnancy. I was about five months along. I had just finished taking a round of antibiotics and of course developed a yeast infection. I had gotten yeast infections before from antibiotics but this time for some reason the antifungal creams did not help. I took lots of tubes of cream and just assumed I would be okay after delivery but here it is eight years later and I am still suffering. Good luck with the low oxalate diet. I have never been able to see any correlation between what I eat and my pain level. What is the Pain Project? Is that Dr. s' program of testing your urine for oxalates? I am a member of the VP Foundation and I have been through that and although my oxalate levels were found to be high the citrate and low oxalate diet are not the answer for me. I am inclined to believe yeast is a factor for me although I have not found the correct medication yet to help me. " Stacie S. " wrote: > > > Hello, > > Having looked for a list like this one for a year now, i am very happy to > have found you all. It is such a relief to be able to share my story with > people who might understand, finally. My name is Stacie, I'm 25, married to > with two young children. I have had vestibulitis a little over a year > now... > > It all began in February of '98, the 7th month of my 2nd pregnancy, when i > developed what i thought was a yeast infection (itching, yeasty odor) but > since i had never had one i wasn't positive. I called my Dr. (an FP) who > suggested over the phone i try an OTC yeast cream, so i bought a 3 day > " cure " to start that night. Well, apparantly i had a sensitivity to this > stuff, it gave me intense burning and itching that was very hard to bear. > Still, like a fool, i thought, " i'm not going to go through all this without > getting rid of that yeast infection! " so i grit my teeth and stuck with it > for the whole 3 days, awful as it was. I sure was relieved when those 3 > days were over, so i could start feeling normal again (well, as normal as > possible in the huge pregnant state i was in but-- That burning from the > yeast cream just didn't go away and didn't go away. The days turned into > weeks, and at my next prenatal visit i complained to my doctor about my > pain. He took a look and observed, " yes, it does look sore... The cream > should have cleared it up if it was a yeast infection, it must just be a > sensitivity from the pregnancy hormones... " So i waited. > > On April 6 of 98 i delivered my son. The dr couldn't see because i was > standing and holding on to derek while i delivered, so he kept checking the > baby's station with his fingers as i pushed. Even through the pain of > childbirth i kept telling him, " Stop touching me! I have a sensitivity, > remember??? " to which he tactfully replied, " Well i don't want the baby to > fall on the floor! " I was very eager to have my own body back after the > baby, and especially to have that pain be gone. > > But the days turned into weeks again, and at my 6 week post-partum visit i > complained again about the burning soreness. " Hmm. Looks like a yeast > infection, " he decided, gave me some tubes of a different yeast-killer, and > home i went. I was not amused. Obviously he didn't know what was wrong > with me, he was just an FP after all, but i tried the cream anyway (at least > i tolerated it well). When it didn't work i went to a GYN (well, her > physitian's assistant) and finally was put through the gamut of tests, still > expecting a cure by tomorrow. You all know the shock and horror as those > words sink in, " we can't find anything wrong, so we just call it > vestibulitis...no cure...i'm sorry. " > > I was crushed completely. Would i never have sex again? What about my > marriage? How could i care for my children dealing with this pain forever? > I felt like i had lost my sexuality completely, that i was ugly and > undesirable. It was a very dark and isolated time for me. But then on the > net, after lots of bad news, i finally found the Vulvar Pain Foundation's > home page. It wasn't exactly what i wanted (i want a cure, not a > foundation) at least they offered hope in some non-violent therapies. I > didn't feel up to the low oxalate diet, changing my whole life around after > i'd already lost so much, you know? But the estrogen therapy sounded like > something i could do > (http://www.vulvarpainfoundation.org/topical_estrogen_treatment.htm) so i > summoned all my optimism and gave it a shot. After six weeks i was having a > little improvement, and after several months the change was wonderful. The > pain wasn't all gone all the time, but sometimes it was. Even during > flareups the pain was managable, affecting primarily my urinary tract rather > than my entire vestibule. I could have sex sometimes! I was almost all > better! > > Then over Christmas i had a terrible relapse, worse than ever, that didn't > let up for a couple months. In retrospect it was probably because chocolate > and nuts were at the bottom of the food pyramid over the holidays, but i > wasn't watching oxolates at the time. I dug out the papers i got from the > VP foundation when i joined (the stuff i couldn't bear to even read at the > time) and really read it, especially the stuff from the Pain Project. I > immediately began cutting out the high oxalate foods and taking calcium > citrate while continuing the estrogen, and i'm planning to _do_ the pain > project soon. I'm getting the pain under control again, finally, feeling > like i'm over the worst. But i still hope for more improvement. Has anyone > on this list had success doing the pain project? > > I know this was long, I'm not usually so loquatious, but this isn't a story > that is appropriate to tell in most settings, you know? It feels good to > have a place to talk about it. > > Stacie > > _______________________________________________________ > Get your free, private email at http://mail.excite.com/ > > ------------------------------------------------------------------------ > Did you know that knowledge is power? > http://www.ONElist.com > Join a new ONElist e-mail community and strengthen your mind! > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 1999 Report Share Posted April 22, 1999 Stacie, We're here to talk, listen, and share information and support. Glad to here that the estrace and diet have helped you. Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 1999 Report Share Posted April 23, 1999 Stacie, Welcome to the list.! Remember you can share anything you want, ask any questions you want. I have decided to go the Pain Project myself. I will let the list know what happens. I am also on antidepressant (Nortriptyline) which has helped some. I started Estrace 4 weeks ago and will see what happens. Take care. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 1999 Report Share Posted April 23, 1999 Stacie: Welcome to the list. I found your intro very interesting. It must have been such a hard time for you during your pregnancy to have this pain. I too wanted an instant cure. I too went through so many gynos shaking their heads, not knowing what was wrong with me. Me leaving the office wanting to cry and going home still in pain. This list has helped so much, if anything it's a place where you can talk about this with people who have what you have. Glad you posted, Lainey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 1999 Report Share Posted April 23, 1999 Stacie: Welcome to the list. I found your intro very interesting. It must have been such a hard time for you during your pregnancy to have this pain. I too wanted an instant cure. I too went through so many gynos shaking their heads, not knowing what was wrong with me. Me leaving the office wanting to cry and going home still in pain. This list has helped so much, if anything it's a place where you can talk about this with people who have what you have. Glad you posted, Lainey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 1999 Report Share Posted April 23, 1999 Stacie, et al: I'm usually just a lurker, (maybe 'cause I'm not ready to accept that this pain could last a lifetime) - but something in your story struck me and I just had to write. Let me introduce myself (finally)! My name is also Stacey, and I have had vestibulitis off and on for about 3 years. Here's my story. It's alot like yours. Let me begin by saying that I was date-raped at the age of 15 (I am now 32). So I have issues already, not to mention those associated with vv. I've been through counseling, though. I've been married for almost 4 years now. I had my 1st child in 1996, after a very hard pregnancy. It seemed that my body just didn't like the hormones! I was on bedrest for 5 weeks with preterm labor and preeclampsia (while in my 1st year of law school, no less -- talk about STRESS). About 12 weeks after my C-section, I got brave enough to try to have sex ( I was restricted during the pregnancy). Since I was breastfeeding, I decided to use a spermicide with a condom, rather than the pill. The spermicide was a suppository. After I put the suppository in, I experienced the most excruciating burning sensation I have ever felt in my life! I douched (dumb- but anything rather than go to the hospital), but the burning didn't go away. After about 1-2 months of irritation, redness, vaginal tissue swelling, I went to the doctor. I just assumed it would heal, but it never did. My doctor noted that it was a serious chemical burn from the contraceptive, and prescribed lots of different steroidal creams and even a prescription diaper rash cream. YUK. I toughed it out (no sex) and breastfed my baby until she was ten months old, at which time I weaned her to my frozen breastmilk in the bottle (until 1 year). By this time, it was August 1997, and the pain seemed to have vanished around that time. In October 1997, I conceived again (I was trying to get childbearing out of the way - sick, huh?). After 25 weeks of bedrest with preterm labor (again), I had a scheduled C-section, after which I noticed severe burning sensation in my vagina, again. About 12 weeks after the birth (and breastfeeding still) (Oct 1998), I bravely tried to have sex with my husband, but it hurt like heck! I went back to my doc (who is an excellent OBGYN) and she said that I may have vv, and pelvic floor tension myalgia (can't relax the pelvic muscles). She referred me out, as this was not her area of specialty. Here's the horror story. The doc she referred me to was horrible! He is supposedly the only doc in town who knows anything about vv - and he has a serious attitude. So serious, in fact, that I walked out on him and his arrogance in the 1st 5 minutes of the consultation. As I stated earlier, I've already got issues, I don't even go to male docs unless I have to. I knew immediately that this man was not the man for the job. My OBGYN said my vv might be related to breastfeeding hormones (or lack of hormones thereof), and advised me to wait until after weaning to treat the vv. So I just weaned one month ago when my son hit 9 months (I have 3 months of frozen breastmilk stored, so I'm happy with my decision). Now I'm ready to go for the gusto. My son's pediatrician told me it was time to put myself 1st, so I weaned. The pain has lessened over the last month, but it really flares up around the time of my period. Some days are better than others. I have Estrace Cream, the only cream that I dug out of the reject pile that seems to help. I hadn't been using it much during breastfeeding, but now I am going to use it twice a day and see what happens. I started biofeedback today, so I have no idea what will happen with that. I'm interested in learning everything I can about citrate and oxylates, etc. I occasionally use lidocaine 2% cream, but I haven't had sex since that one time in October 1998. I finally decided that I couldn't wait to live my life " when I'm better " but instead I need to work " through " the vv, in case it never goes away. My husband, on the other hand, was so convinced that it would go away, that he was willing to wait until I weaned to " begin living " again. Moment of truth: One night, last week, I decided to try sex, but my husband was so afraid of hurting me that he couldn't get his mind off that possibility. After that night, I/we began seeing a psychotherapist, because I realized that this was not just my problem, it was my husband's as well (poor sweet man). I saw the therapist Monday, he is seeing her Saturday, and we might go together after that. We have a wonderful marriage, besides the fact that we can't have sex (but that's a pretty big problem!) Anyway, now that I've poured my heart out telling my story, I really do feel better. Enough lurking! I started a list for vv partners last week on onelist. I don't subscribe, my husband does, so he's sort of the moderator there. Have your partners check it out, it's just getting going and has about 12 subscribers. They need an outlet too. Love in Him, The 'other' Stacey _________________ Stacie S. wrote: > > > Hello, > > Having looked for a list like this one for a year now, i am very happy > to > have found you all. It is such a relief to be able to share my story > with > people who might understand, finally. My name is Stacie, I'm 25, > married to > with two young children. I have had vestibulitis a little over > a year > now... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 1999 Report Share Posted April 23, 1999 Stacie....do you think the spermicide was the cause of your vv problems? I'm asking because years ago (20 to be exact) I also had that kind of reaction. I used some kind of suppository & it burned like crazy. The doctor told me many women are allergic to them. I was fine after that, but of course, never used them again. Also, I had pre-eclampsia in the last weeks of my pregnancy & had a c-section. I experience burning, itching & irriation which only started 5 yrs. ago so I can't blame the suppository. I'm scheduled for a vulvar biospy in May. I'm also having blood work done to check my hormone levels since I believe I may be starting menopause & that's part of my problem. Hopefully, my doctor will prescribe estrace. I was just curious whether you relate your problems to the suppositories. Take care....Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 1999 Report Share Posted April 23, 1999 Stacie....do you think the spermicide was the cause of your vv problems? I'm asking because years ago (20 to be exact) I also had that kind of reaction. I used some kind of suppository & it burned like crazy. The doctor told me many women are allergic to them. I was fine after that, but of course, never used them again. Also, I had pre-eclampsia in the last weeks of my pregnancy & had a c-section. I experience burning, itching & irriation which only started 5 yrs. ago so I can't blame the suppository. I'm scheduled for a vulvar biospy in May. I'm also having blood work done to check my hormone levels since I believe I may be starting menopause & that's part of my problem. Hopefully, my doctor will prescribe estrace. I was just curious whether you relate your problems to the suppositories. Take care....Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 1999 Report Share Posted April 23, 1999 Diane: I have no idea whether the spermicide was the cause of vv, or whether it just brought the vv to light. I am clueless! I am beginning a vv onslaught today. Pelvic exercises 3 times/day, heat on tender left side of vulva 10 mins/day (wierd- Bartholin gland?), Estrace cream twice a day, calcium citrate 3 times/day, plus lots of homeopathic supplements. Of all the stuff I've tried, it seems like the herbs have done the most good (not for the vv, but for my mental state). I was on a low-dose of Zoloft for depression, but I replaced that with St. s Wort and 2 Ginsengs. I was on daily Valtrex for recurrent genital herpes, and I replaced that daily dose with an immune system building herb - so that I only take Valtrex if I feel I'm developing an outbreak. Having 2 small kids is wearing on one's energy, especially if one is an insomniac, so I now take Melatonin 1/2 hour before bedtime, and I sleep like a baby- So even though I have the vv, I am better able to cope during the day. I thought my OB would shoot me when she found out about all the herbs, etc, but she applauded my willingness to try alternative medicine! So I'm very glad I did. Anyway, enough of my rambling! By the way, since there are 2 Stacies/Staceys (I'm the second one - the " other " Stacey) - I will now call myself Stacey2! I am the one who used the spermicide! Stacey2 _______ DMDi1@... wrote: > From: DMDi1@... > > Stacie....do you think the spermicide was the cause of your vv > problems? > I'm asking because years ago (20 to be exact) I also had that kind of > reaction. I used some kind of suppository & it burned like crazy. > The > doctor told me many women are allergic to them. I was fine after > that, but > of course, never used them again. Also, I had pre-eclampsia in the > last > weeks of my pregnancy & had a c-section. I experience burning, > itching & > irriation which only started 5 yrs. ago so I can't blame the > suppository. > I'm scheduled for a vulvar biospy in May. I'm also having blood work > done to > check my hormone levels since I believe I may be starting menopause & > that's > part of my problem. Hopefully, my doctor will prescribe estrace. I > was just > curious whether you relate your problems to the suppositories. Take > care....Diane > > ------------- > ---------------------------------------------------------- > Did you know that we add over 1,000 new e-mail communities every day? > http://www.ONElist.com > Explore a new hobby, discover a new friend, laugh at a new joke! > ---------------------------------------------------------------- > ------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 1999 Report Share Posted April 23, 1999 Diane: I have no idea whether the spermicide was the cause of vv, or whether it just brought the vv to light. I am clueless! I am beginning a vv onslaught today. Pelvic exercises 3 times/day, heat on tender left side of vulva 10 mins/day (wierd- Bartholin gland?), Estrace cream twice a day, calcium citrate 3 times/day, plus lots of homeopathic supplements. Of all the stuff I've tried, it seems like the herbs have done the most good (not for the vv, but for my mental state). I was on a low-dose of Zoloft for depression, but I replaced that with St. s Wort and 2 Ginsengs. I was on daily Valtrex for recurrent genital herpes, and I replaced that daily dose with an immune system building herb - so that I only take Valtrex if I feel I'm developing an outbreak. Having 2 small kids is wearing on one's energy, especially if one is an insomniac, so I now take Melatonin 1/2 hour before bedtime, and I sleep like a baby- So even though I have the vv, I am better able to cope during the day. I thought my OB would shoot me when she found out about all the herbs, etc, but she applauded my willingness to try alternative medicine! So I'm very glad I did. Anyway, enough of my rambling! By the way, since there are 2 Stacies/Staceys (I'm the second one - the " other " Stacey) - I will now call myself Stacey2! I am the one who used the spermicide! Stacey2 _______ DMDi1@... wrote: > From: DMDi1@... > > Stacie....do you think the spermicide was the cause of your vv > problems? > I'm asking because years ago (20 to be exact) I also had that kind of > reaction. I used some kind of suppository & it burned like crazy. > The > doctor told me many women are allergic to them. I was fine after > that, but > of course, never used them again. Also, I had pre-eclampsia in the > last > weeks of my pregnancy & had a c-section. I experience burning, > itching & > irriation which only started 5 yrs. ago so I can't blame the > suppository. > I'm scheduled for a vulvar biospy in May. I'm also having blood work > done to > check my hormone levels since I believe I may be starting menopause & > that's > part of my problem. Hopefully, my doctor will prescribe estrace. I > was just > curious whether you relate your problems to the suppositories. Take > care....Diane > > ------------- > ---------------------------------------------------------- > Did you know that we add over 1,000 new e-mail communities every day? > http://www.ONElist.com > Explore a new hobby, discover a new friend, laugh at a new joke! > ---------------------------------------------------------------- > ------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2001 Report Share Posted February 27, 2001 Hi, I'm shar. I've been a type 2 for nearly 5 years. I'm a retired RN, worked on surgery mostly in hospital but then did Home Care nursing for a number of years. I was the first contact for many new Diabetics. I was diagnosed because of a yeast infection. My bs was very high 12mmol[Canadian]. the Lab called my MD at home and she called me. She said to me afterwards, how come I didn't know. Well, I was thinking it was all menopause!! and being thirsty all the time went along with the hot flushes, right. Pretty dumb for a nurse. Being Diagnosed really floored me and I realized how little I knew. I started on meds for diabetes as well as highBP, they seem to go together. I started walking and lost over 30 pounds. In less than a year I joined a walking club and walked an hour a day during the week and 2 hours on weekends with the club. Loved it. Then 2 years ago I developed a herniated disc which has left me with nerve damage now 1 leg and foot drop. Lots of pain when I walk. My bs went up and we've had to increase my meds. I've gone through a period of depression because i can't walk like I did but feel I'm over it now. Sorry this is so long. I'm enjoying all the posts. Shar Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2001 Report Share Posted February 27, 2001 Hi Shar, I don't think it's so odd that you didn't diagnose yourself. Diabetes kind of creeps up on most of us (type II's that is) and the gradual increase in symptoms doesn't seem so odd. It was fatigue that first took me into the doctor's office. I was just so tired, particularly my legs. My doc just said I was a "borderline" diabetic (ha, like being a little bit pregnant, eh?). Told me to lose a little weight and watch the sugar. So I just dieted a little and didn't worry about it! Then about a year later I ended up in the ER with a heart rate of 215 and bg over 200, and bp of200/110. Back to doc who put me on Verapamil for bp, glyburide for bg's and a 1500 cal ada diet. I felt awful! The glyburide caused extreme lows, the verapamil made me feel yucky. It was a bad time. He took me off the glyburide after 1 week because of the lows, but never suggested I see an endo, or get a meter, or go to diabetes classes. I found out most of what I've learned on the internet, got a meter and started taking charge of myself. Discovered a low carb diet controlled the bg's best. Sometimes doctors make me see red And I work with them all day every day! Fortunately, I found a new doc who supports low carb and is great. I'm sorry to hear about your HNP, laminectomy wouldn't help it? No wonder you went through some depression. I'm glad you're feeling better. Meenie Hi, I'm shar. I've been a type 2 for nearly 5 years. I'm a retired RN,worked on surgery mostly in hospital but then did Home Care nursing for anumber of years. I was the first contact for many new Diabetics. I wasdiagnosed because of a yeast infection. My bs was very high12mmol[Canadian]. the Lab called my MD at home and she called me. Shesaid to me afterwards, how come I didn't know. Well, I was thinking it wasall menopause!! and being thirsty all the time went along with the hotflushes, right. Pretty dumb for a nurse. Being Diagnosed really floored me and I realized how little I knew. Istarted on meds for diabetes as well as highBP, they seem to go together. Istarted walking and lost over 30 pounds. In less than a year I joined awalking club and walked an hour a day during the week and 2 hours onweekends with the club. Loved it. Then 2 years ago I developed a herniateddisc which has left me with nerve damage now 1 leg and foot drop. Lots ofpain when I walk. My bs went up and we've had to increase my meds. I'vegone through a period of depression because i can't walk like I did but feelI'm over it now. Sorry this is so long. I'm enjoying all the posts. Shar Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2001 Report Share Posted March 1, 2001 At 10:06 PM 2/28/2001 -0500,Bob Litty wrote: >Great going Louie! Stay after it. I hope I will be off insulin after next visit. How are you doing? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2001 Report Share Posted March 1, 2001 Great going Louie! Stay after it. Bob Luan Pham wrote: > I should post here while back, but got busy after change ISP i got > busy. Now my last three month HbA1c was 6.5. > > ------- > Luan Pham > mailto:luampham@... > ICQ: 30489826 > > " In the middle of difficulty lies opportunity. " > --Albert Einstein > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2001 Report Share Posted March 1, 2001 Welcome Back, Luan Keep up the good work Meenie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2001 Report Share Posted March 1, 2001 At 09:05 AM 3/1/2001 -0500,Meenie wrote: >Welcome Back, Luan >Keep up the good work Thank!!! How are you doing? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2001 Report Share Posted March 1, 2001 Doing well, thanks We just got a treadmill so are exercising like little rats in a wheel <G> Meenie At 09:05 AM 3/1/2001 -0500,Meenie wrote:>Welcome Back, Luan >Keep up the good workThank!!! How are you doing? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2001 Report Share Posted March 3, 2001 At 01:23 PM 3/1/2001 -0500,Meenie wrote: >Doing well, thanks We just got a treadmill so are exercising like >little rats in a wheel <G> Sound good.. I try to exercise at least four days a week. Quote Link to comment Share on other sites More sharing options...
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