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Fowler's or vulvar vestibulitis

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  • Fowler's or vulvar vestibulitis

    Had a urodynamics today, feel awful now and have two possible diagnoses (yay) which make little sense to me (boo). Bathroom visits are hell now.

    The urodynamics was awful, mostly because bringing in the cath hurt a lot, and even when it was inside it was irritating so much. And every time the nurse touched it, I was crawling in pain. Afterwards, the urologist did his own peek inside with a large, metal tube and I can only describe it as a brief torture session. I was screaming and crying, it hurt so much, I really couldn't help myself, and the doc just said: 'does it really hurt that much?'. Well, duh.

    Apparently, the pain is located in the urethral sphincter. Everytime he touched me there, I went mad. He said that he believes I have Fowler's syndrome. I had to Google that, but it makes little sense to me. I can pee easily and have no rentention problems. I had a really hard time peeing during the urodynamics. But hey, I was lying down, in pain, nervous, with the nurse looking: this is not how I pee at home. Anyway, there is a foolproof test, which I'm having in a month from now.

    As an alternative, he thinks I may have vestibulitis, which makes no sense to me either. He seems really focussed on the fact that I avoid sex during episodes. Well, I avoid sex when having the flu too. But the pain isn't located in my vagina and I have a pretty normal sex life when not flaring. The pain is in my urethra.

    Anyone who knows anything about Fowler, do tell me. In the meantime, I'm lying down, having comfort food and watching movies.

    All movie recommendations welcome!
    Not diagnosed yet

    More than a decade of 'bladder issues'
    Main symptoms: burning pain in urethra, urgency, frequency
    Triggers: Alcohol, carbonated drinks, tight jeans, synthetic underwear, stress, dehydration
    Tests: zillion negative cultures, a cysto-hydro with biopsy, two urodynamics, several cysto's and ultrasounds, a sphincter electromyogram
    Starting physical therapy soon

    Getting married 7/7/2012