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Newly diagnosed w/vestibulodynia

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  • Newly diagnosed w/vestibulodynia

    I was just recently diagnosed w/vestibulodynia, I guess it was previously called vulvar vestibulitis. I have struggled w/IC symptoms for over a yr now, after coming off bc and never getting a period again! They say I'm in premature menopause (I was 40). They thought I did have IC, but after the hydro/cysto, they ruled that out. B/c my symptoms have persisted they, the urologists, have referred me to this Vulvar Center. The dr's there say I have this vulvar condition. The thing is, after reading alot about the symptoms, I don't believe I have this. Most, if not all of my symptoms are urinary in nature. I will have some burning & itching on occasion. I have gotten more than my share of yeast infections since the birth of my daughter, maybe 1-2/yr. But alot of my "irritation" is in the urethra area. I use lorazepam (an anti anxiety med to calm it and take elavil at night) These seem to keep it pretty much in ck except for some flare ups and the fact that I cannot stop taking these meds for even a day! I have developed a strange feeling in my upper thighs, like a quivering feeling. It's just on the inside of the very upper part of my thighs. I attibute this to the spasms my urethra is in. But the drs have not made this connection it seems. After doing much research myself, I believe I may have PFD & something called urethral syndrome. Has anyone else heard of this latter one?? Also, is a quivering feeling on the inside of the upper thighs a symptom of IC or Vulvar vestibulitis? I feel I am getting no where w/my drs now. They started me on Neurontin and I didn't get a wink of sleep last night and my urethea & bladder felt funny this morning. I also had some urinary retention when I got up - and that scares me!! Urinary retention is awful!!! Well, sorry to go on & on here, I'm just very frustrated! Any insight would be very appreciated!!


  • #2

    You may very well have PFD. PFD is a disorder of the muscles and nerves of the pelvic floor. Pain can be referred to the urethra, thighs, back, almost anywhere. The overactivity of the nerve causes it to continually contract in a pain cycle something like a computer loop.
    I found out my main complain which was urethral burning, stinging was really due to pelvic floor spasm which can be pretty painful.


    Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
    Diagnosis: IC, PFD (both in remission)


    • #3
      thigh quivering

      After a continual flaare started after a failed hydro, I started having worse IC. The worst symptoms and sudden amount of different symptoms started. " One thing after another syndrome!" I too had quivering of my upper thighs worse with back/pelvic exercise and burning of that flesh. I had been diagnosed already with urethral syndrome and painful bladder syndrome-IC. Things got better after Elmiron and time. I guess this is a process our bodies go thru. It was weird. I don't know if I have pfd. Anyway, some women have this thigh thing happen. I think I have frbro too. It was definety from the IC or the fibro.