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Vulvar vestibulitis?

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  • #1

    Vulvar vestibulitis?

    After an incredibly painful urodynamics, my urologist thinks I have either Fowler's syndrome - a rentention problem, I guess - or vulvar vestibulitis. I had to Google both, but neither makes much sense to me.

    The main reason why he's thinking about vestibulitis, is that I told him that I don't have sex during flares, because it hurts. And sometimes sex seems to be a trigger.

    But:
    - the pain is located in the urethra, not in the vagina (today it seemed the pain was mostly in the urethral sphincter)
    - I can have normal sex when not flaring
    - When I wasn't sexually active, I was having flares as well
    - Even when flaring, I can have sex, it's just not that comfortable

    My symptoms are mostly pain in the urethra and a high frequency when flaring. They get worse with drinking alcohol and wearing tight jeans.

    How does all of this sound to you?
    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
    Tags: None
  • #2
    I have vulvar vestibulitis, and what I guess you'd consider a very sensitive urethra. Has anyone ever done the "q-tip test" on you? You can do it yourself too. Basically, if you have VV, you will experience pain when the q-tip touches the glands around your vagina.

    I usually use lidocaine before sex, since I only experience discomfort when the area is touched.
    ----------------------
    -Amanda
    34 years old, bladder symptoms all my life
    diagnosed with PFD and VV October 2009; IC May 2010

    Current meds:
    Cystoprotek 2 pills twice a day, Hydroxyzine 10 mg, Gabapentin 600 mg, Myrbetriq 25mg, Zoloft 25 mg, Mircrogestin, capsaicin cream (for vulva)
    Other past treatments:
    IC diet, physical therapy, Traumeel injections as needed, TENS unit, heating pad, instills with sodium bicarb, lidocaine, and mucosa compositum
    Tried and didn't work:
    Pyridium, Singlair, Nortriptyline, Elmiron, lidocaine and heparin instills (worked at first, then didn't anymore), various creams, acupuncture

    Comment

    • #3
      If you aren't feeling comfortable with what you're being told, you might want to consider a second opinion --- or you could ask your current urologist about interstitial cystitis as a possible diagnosis for you. One think you might do is to give the IC diet a try. You'll find the latest food list at the link in my signature below.

      Sending healing thoughts,
      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help: http://www.ic-network.com/patientlinks.html

      Sub-types https://www.ic-network.com/five-pote...markably-well/

      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.       [3MG]

      Anyone who says something is foolproof hasn't met a determined fool

      Comment

      • #4
        Hi Donna -thanks, but this is not the first doctor I've tried, and I've shared my concerns about IC with him, but he feels the problem is muscular and related to the urethra (this might be true).

        I've never done a q-tip test. I wouldn't really know where to press, but I guess I'll give it a try. Thanks for the advice!
        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

        Comment

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