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  • Not sure what it is!

    Hello all,

    I've been poring over this site and the web for weeks, trying to figure out what the heck I have. I've learned an awful lot--like exactly where a woman's urethra is! I'm 54, post-menopausal and to add another wrinkle to the mix, I'm a long-term survivor of HIV/AIDS (over 25 years).

    The main symptoms are an extremely sensitive/painful urethra, urinary frequency (up to 24 times a day), mild groin pain and mild occasional pelvic pain (about where my ureter is, I guess).

    I don't have the sharp, razor-like abdominal pain that people talk of here, but rather a constant feeling of pressure/pain that is worse when I sit (put pressure on that area) or turn my pelvis a certain way (like standing up after sitting or bending over).

    Urination doesn't hurt, but sometimes my urine seems to come out at an angle!

    I have had this painful urethra before, but I never paid much attention to it because it always went away after a day or two. This time, though, it's been bad for about 2 months. I've had two negative urinalyses, and a pelvic exam/PAP test that came out normal.

    A new (I think) symptom is a periodic intense, sharp stinging and raw feeling at the vulva, with occasional redness. I think this may be due to over-acidic urine and/or dehydration. The NP noticed vulvar "irritation" and suggested I increase the dose of estrogen replacement I'm taking but ... I didn't really have this irritation before the urinary problems. I have a little pain with sex, but that's more of a lubrication and lack of use issue.

    I had an appt with a urologist but while I was filling out the paperwork, he suddenly had to leave the office. So now it's another 2-week wait.

    Now I'm not sure which kind of doctor I need! Today in my research, I came across Skene's cysts, which can put pressure on the urethra and I guess make the urine come out at an angle. Apparently I should see an ob/gyn to diagnose this ...?

    One last thing: in another thread, somebody wrote that drinking beer actually made their urethral pain go away. I have noticed this with myself in the past! Alcohol made it go away. But it doesn't really work now, and it's certainly not how I want to get rid of this symptom!

    Well, I'm sorry for writing a novel here--it's hard to know when to stop. Any advice or info would be most appreciated! Thanks for reading.

  • #2
    I saw both a uro gyno and a uro for my symptoms. The uro gyno was really good at assessing my pelvic floor muscles and any other possible gyno problem. The uro was better at assessing my bladder function and more up on any medication used for possible PBS. I was glad I saw both as I felt I got a pretty comprehensive check of everything. I ended up having both pelvic floor muscle spasms and also PBS, and I'm not sure if the uro alone could have or would have diagnosed the pelvic floor problem.

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    • #3
      I always start with my primary care doctor --- he has been very helpful in making referrals. I always see a urologist for my IC, but have gone to the same office for all of my 36 years since I was diagnosed.

      I hope you get some answers soon.

      Warm 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.

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      [3MG]

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