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i've been here a while, but here's my story

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  • i've been here a while, but here's my story

    ever since about age 17 i started getting frequent bladder infections. of course, its so embarassing to tell people sometimes because they turn red and act like its some sort of STD! Not to mention, telling your parents isnt any fun however, i was getting these painful infections every 3 months. As time when on, even when i wasnt having an active infection, i started getting painful twinges when i peed. somtimes the burning pain would last an hour or so, then go away. i found that if i drank lots of water, it relieved it. As the years went on, the pains grew more, but still not enough to really run to the doctor. i just figured i had sort of damaged myself from all the UTIs. i had read about IC, but thought it seemed to severe to be what i had. besides, i felt like most of the pain was in my urethra, not bladder. Well, last fall, i got a simple UTI that felt like it never went away. i saw my doctor and immediatly feared IC. but she of course was one of those doctors who didnt believe IC existed. i had to find somebody else, becuase my pain was getting bad and i was testing negative for infection. The first urologist did tests, xrays, and cystoscopys but saw nothing. He also kept trying to give me antibiotics even though they couldnt find an infection. i HATE antibiotics! anyway, i found this site and knew i couldnt let myself go years without relief like some of you poor people had been through. the pain was getting worse and worse and i feared i'd have to quit my job and live my life as a crying heap on the couch. finally i researced my area for Urologists and found a woman who deals wiht interstitial cystitis. YES!! (for those of you who live near Southern NH, look up Susan Finnerty ) First she thought i may have only nerve pain because i was NOT peeing all the time. I had all the pain, but no frequency, which seemed wierd. But i went on Elavil anyway, and a few months later, Atarax. i feel a lot better, and while i'm not pain free, and i still get dreaded UTIs all the time, i can say that i've had a huge improvement. She finally told me i do have IC. For those of you who are afraid of medicines, or maybe had a bad reaction at first, I urge you to stick with it, (with permission of your doctor of course!) Because i can tell you, Elavil was awful at first, but the side effects went away.

    For the rest of you, dont give up. try finding a good uro, and sometimes its worth researching doctors to find ones that deal with IC. it seems that many uros only deal with prostate problems, etc. But good doctors are out there! i only suffered badly for 3 months before i got treatment (though the milder symptoms lasted years) and i cant imagine going through that for years as i've read here! i nearly cry when i read these stories.
    diagnosed IC Jan 2007 (though i feel i've had it mildly for years)
    frequent UTIs
    No frequency, just urgency and pain!

    tramadol 50mg twice a day. this stuff works good for nerve pain!!!! (update, i'm down to mostly one pill a day now!)

    Physical Therapy. if you have pelvic nerve pain or muscle pain, its worth a try. it helped me with the constant burning.

    TENS may help a little

    Cystoprotek might be helping as well. i'm getting better as time goes on and this could be why.

    fish oil, herbal teas, skullcap (might try passionflower for nerves) I'm not very diet sensitive.

    Went OFF elavil and nortryptiline (worked wonders, but didnt like the weight gain)

  • #2
    Hi Nicole.
    I am glad you found a good doctor. It seems it is very hard to find a good decent doctor these days.
    I am also sorry about your frequent UTI's, that stinks! I have had them, and they are awful, especially now that I have IC. I unfortunately cannot take elavil as I had bad side effects from it, but have heard it helps some with IC. I am glad it is helping you.
    Anyhow, hope you continue to due well.