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    All Endo, PCOS, Adeno, Hysto's, Pelvic Pain this is the link to our new Exchange. It will take some time to get everything re-entered...but WELCOME ALL!!!
    Does anyone on here have IC?
    sambrolaw posted:
    I'm just curious if anyone on this board has IC? I have been trying not to self-diagnosis myself before going back to the doctor after surgery, but I am very curious about IC. Just wondering what you had to go through before being diagnosed? I know endometriosis has to be found or ruled out before this diagnosis can be made (and it has been ruled out in my case). I tried this ( and scored a 19. I don't want to have something stuck in my head again, as I did with endometriosis, but I am so frustrated with constantly being in pain.
    hopeful2218 responded:
    Sorry Sam, I posted to your questions last night...and it seems to have vanished *again WebMd getting super irritated!*

    Yes, there are several women who have IC on this board, I'm sure they will answer your questions better than myself, as I do not suffer from this condition.

    This is what I have found about how they "test" for IC.

    Diagnosis is made by ruling out other causes. Tests include:
    • Bladder biopsy
    • Cystoscopy (endoscopy of bladder)
    • Urine analysis
    • Urine culture
    • Urine cytology
    • Video urodynamics (shows how much urine must be in the bladder before you feel the need to urinate)
    So as you can see from some of the tests...this is not something to self diagnose. If I'm tracking your post correctly, you just had surgery, correct? I would hope that they would have explored your bladder during your lap. But again, I've seen doc's breeze past adheasions, and all kinds of stuff. So you could be having these symptoms because you just had surgery...after my lap, when I would urinate, it felt like a ripping sensation in my bladder...I would contact your doctor and see what he/she says/recommends. This is not something to self diagnose.

    Also, IC is frequently misdiagnosed as a urinary tract infection. Patients often go years without a correct diagnosis. On average, there is about a 4-year delay between the time the first symptoms occur and the diagnosis is made.

    I always recommend keeping a journal about your medical conditions, then you are able to present this to your doctor during visits, and it helps to prove that first..we are not crazy..and it also helps a doctor "track" your pain or discomfort. Certain things can trigger pain for women, so keeping a journal helps you and the doctor.

    I do hope that you will keep us posted..hopefully this post won't disappear this time!!!!!!!

    Best wishes hun!!!!
    sambrolaw replied to hopeful2218's response:
    Thanks Amanda!

    I just don't want to get something stuck in my head again. After my surgery I did have really painful urination, but I just assumed it was due to the catheter. I don't think they did anything with my bladder during the surgery. I have started keeping a pain journal along with what I'm eating and the number of times I urinate during the day, so if nothing else I'm more aware of what is going on. I have had recurrent UTIs - I think about 5 last year. It's usually said, well you're a teacher, so that makes you "high risk." I did the IC self-assessment on one of the websites and scored a 19, my mom got a 1. This is why I thought about bringing the topic up. I did mention to my doctor that I felt that I urinated a lot, and will bring it up again at my next appointment. I'm just frustrated by being in pain and not knowing what it is or how to treat it. I know many of you understand that frustration.

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