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  • slow decline

    This problem is closely related to IC for me, because it started at the same time as the bladder problems and always varies in direct proportion to my bladder discomfort.

    My gyn said something briefly about how the bladder sits on top of vaginal nerves, and that my "best bet" was simply to get treated for IC. She never actually used the word "vulvodynia" but I don't know what else it would be called. I don't have much vaginal discomfort, it's all north an inch or two, if you catch my drift.

    I feel like it's all getting slightly worse every week. Now I can feel my pulse in my crotch and it feels like it is cold and buzzing. Whenever the doctor or a nurse or whoever asks me if I am in pain, I don't know how to describe it, because I think of pain as a headache or cramps or stubbing my toe or whatever. What am I supposed to say? It is so bad it makes me want a female circumcision.

    -Liz

  • #2
    I don't know if this will make you feel any better, but the pain/sensation you mention is not unheard of in IC patients. Whether it's a referred pain from the IC or whether it's the Vulvodynia I've never found out. I guess it's enough that it's there at all! For me the onset of that same pain was also at the onset of IC although I didn't know what I had at the time. It could be (my theory only) that the pain you describe (and is sometimes almost debilitating) is part of the overall pelvic floor dysfunction so common in IC patients. I suspect that something as drastic as female circumcison wouldn't really do a thing...were one to actually get that drastic....the pain would just move somewhere else. At least you know that you're not the only one. I have read at least a couple of other posts in the past that mention this. A heating pad does seem to help. Also, since being on Elmiron I have noticed that this particular nasty little pain is much less frequent. At any rate, hang in there!
    GardenLady

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    • #3
      Hi Liz,
      I also noticed that as I began to get my IC under control with Elmiron and Elavil, the pain in my vagina (and clitoris) went away. But when I get an IC flare, it comes back, so I guess it really must be connected somehow. The point is...there's hope. Hang in there...
      Kat

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      • #4
        Hey Girls,

        I too have both IC and vulvar vestibulitis syndrome. Although I had vestibular excision surgery several years back, I still have a little residual vestibule tissue. I've noticed that when I flare with the IC, the vestibular tissue flares also. Unfortunately, most gynos deal with vulvar vestibulitis and uros IC. Too bad these two fields haven't gotten together to "see the bigger picture." No doubt in my mind that IC and vulvar vestibulitis are one in the same disease.

        Sherry

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        • #5
          I tend to agree with Sherry. I also notice big time that my vulvodynia is acting up when I am in a flare. For me Elmiron and Elavil are the two meds that have helped me the most. I guess I am lucky that my Uro realizes that vulvodynia and vestibulitis run hand and hand with IC in my case. Maybe you could let your doctor know that your symptoms seem to co-incide with one another. I also find the heating pad works for me. My pain was always "electric or burning" until the meds started kicking in. I have been virtually pain free for almost 2 years. Hope this info helps. Mar [img]smile.gif[/img]

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