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Vulvar Vestibulitis

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  • crazylady
    replied
    cure for vulvar vestibulitis

    For 22 years I suffered with Vulvar Vestibulitis. I have seen countless doctors who misdiagnosed it and tried EVERY treatment out there with no success. The only way to diagnose it is for a doctor (who knows what they are looking for) to use the cotton swab test. I recently had surgery to remove the vulvar vestible and I am actually cured! It is a miracle. The doctor who performed the surgery is Howard Sharp at the University of Utah Medical Center. Several doctors had referred me there. It has been 6 months since the surgery and the pain is finally gone. After surgery, I also needed to do vaginal stretching and use a cream that was mixed by a pharmacist containing hydrocortisone and shortening to soothe the remaining irritated skin. There is hope!

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  • poetgirl
    replied
    For me, the burning is not constant. It tends to get aggravated by certain things, cyclic changes like my hormones are included. I was feeling a lot of burning the past two weeks, but now that my period is over, the burning has completely subsided.

    If I had intercourse there's a good chance I would experience burning and maybe some urgency/frequency the next day if I wasn't diligent about using lubricant or rinsing the area with cool water afterwards.

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  • Im Colleen
    replied
    thanks poetgirl for your help... Do the symptoms of vulvodynia get worse over time? I have burning that was worse right before and during my period, but when it's over, the burning is still there, but much less so. Does it get progressively worse where I will have the bad burning constantly?

    Thanks,
    Colleen

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  • poetgirl
    replied
    I have been on Elmiron since March and have not noticed any change with the vulvar vestibulitis. Then again, I'm not sure if it's had a lot of impact on the IC yet either (once you start taking a bunch of drugs at once it's hard to say whether one in particular is helpful) but Elmiron does take a while to kick in. I was prescribed Elavil to help with the VV, but instead it seems to have only really helped with my IC symptoms (not that I'm complaining!) I seem to experience the rawness and burning you describe only when the vulvar area becomes inflamed. Certain things, like urine or menstrual blood seem to irritate the vulvar area further.

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  • Im Colleen
    replied
    Does the burning and rawness from vulvodynia improve when you go on ic drugs like elmiron or elavil, or do you need different specific ones for the vulvodynia?

    Thanks,
    Colleen

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  • poetgirl
    replied
    Thanks, all, for the advice. I'm going in for a biopsy on Friday to see what's been causing those lesions. Some days I'm totally OK and then there are other days where the VV starts off a whole chain reaction flare-up. Sigh. Has anyone had their Skene's glands get infected? That's happened to me a couple of times already. What the heck are those glands for anyway?

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  • rubacats
    replied
    Hi Kelly L.

    Two of my docs said that I could continue the desipramine while trying to get pregnant (and I'm on a hefty dose). After becoming pregnant, they said they try to bring folks off of it gradually, but that if it was needed, I could continue it during pregnancy. I don't know about the Elmiron (just started that, and we've decided not to have children, at least not for the time being).

    I can understand your DH's fear about going med-less. My docs said intense pain would be far worse than the meds, which are usually approached with an abundance of caution. So I might get multiple opinions on this one. I know some very beautiful (and healthy) antidepressant babies... baby

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  • KellyL
    replied
    Kelly R--your story sounds familiar. I've had VV since 1991, IC since 1996 and I've had success with Calcium Citrate and now Desipramine (and Elmiron and Detrol LA). This is the first time I can say I feel better in a long time. It's strange because I've been wanting to talk about having a baby and it has been causing some issues between my husband and I. He's like, I can't take another two years of this (off meds for pregnancy and having more pain). Are we totally going to go backwards now that I feel better and go off meds to try to have a baby?
    Poetgirl, I haven't had any luck with estrogen creams, but have tried many things. A&D ointment (like what they give babies with a diaper rash) is sometimes soothing for me. Kelly

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  • rubacats
    replied
    Hi ladies.

    I was diagnosed with VV in 1990, surgery in 1993, and am freshly diagnosed with IC. For me, surgery, desipramine (a tricyclic anti-depressant) and a low oxalate diet were the three things that have helped most with the VV. I can't imagine life without desipramine! Astroglide wink is another great help, and I only use Cetaphil when I feel I must have some kind of soap (yes, I too have been told that it isn't necessary, but there are days...)

    Re the undies, my doc said white cotton, only unscented detergent, no fabric softner, and to run them through two rinse cycles after washing. He didn't go quite as far as the motor oil analogy, but that was his gist. "What you wash with matters less than getting it out of there!"

    My GYN recommended lidocaine cream for the IC symptoms. I tried it for 3-4 days, but the burning got progressively worse each time I used it. Anyone else with this experience?

    Thanks!

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  • sanctuary
    replied
    Replends is great for this pain and dryness, can be bought at any drug store, less then estrogen too..also Lidocaine cream helps the burn. I have this too, poor you :-( I can't do estrogen but Replends helps better without side affects. Also, sitting on an ice jell pack is wonderful for the burn as well and especially after sex.if you still can have sex.. not me ..sanctuary

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  • Finncoffey22
    replied
    Hello,
    Sorry about that last post. I understand about the sever pain. 4 years ago I discovered I had vulvar vestibulitis. I tried everything the creams helped some but when it came down to it I could never be intimate with my husband (whom I had just married) and it hurt just to wear pants somedays. I have had 3 surgeries to remove the glands (Bartholin glands, Skene's glands and most of the posterior fourchette - the area around the vaginal opening). Today I am a new woman. Very rarely do I every have any pain - now I only get mild discomfort during my period. I have NO pain with sex and truly enjoy it. I had to use dilators to stretch the skin since they removed most of the normal outter skin and pulled the skin from inside the vagina out. I would never say it was easy - the surgeries were really hard it took a long time to recover. I had my last surgery on the Skene's glands almost exactly a year ago and as far as the v.v. goes I am great. I have had an extremely hard time with my ic but the removal of the glands was the best decision I have ever made. It took me until this fall to be back to normal but I am better than before. I had to reteach myself to not get nervous before sex because all I every could think was it was going to hurt.
    My prayers are with you - it is such an emotionally trying condition. I spent many days just crying because it hurt so much and affected my life so terribly before the surgeries.

    I am sending all of my thoughts and prayers.

    Good Luck
    Finn hi

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  • Finncoffey22
    replied
    Hello,

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  • trudyjhtwo
    replied
    p.s. I do find lidocaine helps a lot. Initially it stings/burns but then...peace.

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  • trudyjhtwo
    replied
    I am wondering which bath soaps people find the least irritating? My doc said "no soap there" which sounded gross, but does help. I wash with warm water and then use soap elsewhere on my body in the bath. The problem is what's the least irritating soap to use in the bath, as some of it undoubtedly gets where it shouldn't. I did try a hand held shower thing so I could take a shower, but the pressure of the water hurts, so I'm back to baths.

    thanks, trudy ([email protected])

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  • poetgirl
    replied
    I haven't tried the lidocaine-based cream yet. I don't know if the estrogen cream is working for me either, to tell you the truth. Maybe I sat too long yesterday or something but I was experiencing a lot of burning and rawness last night, which of course flared up the IC, so I had to take Levsin in order to calm the bladder down enough (at 2AM) in order to finally get some sleep. The area has been inflamed for the past month, whether or not it hurts, but sex definitely makes the inflammation worse (I had sex 3 days ago and it's worse now!) Time to call the gynecologist again...

    Dawnlizabeth and Kace -- did you have this condition when you met your husbands? I didn't (we were together 7 years when we got married, but I developed all of these problems a few years ago) and some days I almost wish I did. Not because I want to have this condition but because it would have been negotiated into the relationship from the beginning, rather than this problem that has changed the nature of our sexual relationship. Does that make any sense?

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