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Thread: Finally!

  1. #1
    ICN Member
    Join Date
    May 2017


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    Hi all,

    I got what should be a disheartening diagnosis today, but am elated to say I finally have a diagnosis after five years of pelvic pain, ten years of chronic UTIs and almost a year of being in a non-stop flare from IC.

    I was diagnosed with IC (at least as well as you can be with IC) in March this year at the age of 27. But, after trying a ton of things including diet, increasing Elmiron from 3 to 4 a day, a cystoscopy with hydrodistension that brought on terrible urinary bleeding for weeks and "rescue" instillations that made things worse, one of my doctors mentioned endometriosis.

    I have always had irregular and painful periods, but thought that it was normal. I finally went on mirena last year, and my periods miraculously stopped immediately. But then, the pelvic pain got worse after a few months.

    I decided to find a new (fifth times a charm) doctor, as the urologist basically gave up and didn't have a plan, other than assuming it was endo.

    The gyno I found at Emory wanted to do a laparoscopy immediately, but also asked that I have a colonoscopy due to chronic constipation for 8 months.

    The colonoscopy was clear, and today I had surgery. I was a wreck for the last few weeks, convinced that I had Endo, but worried surgery would find nothing. I was worried I was making the pain up. A couple of my doctors hinted at that, one of them saying IC was a "garbage can diagnosis." 😤

    My doctor found endometriosis on my bladder only. In addition to this, my bladder is out of place and adhered to my abdominal wall. She thinks this is congenital, which isn't common, and does not think surgery is the right option. But, at least I finally have a source for the pain.

    I wanted to share my story because searching for the right diagnosis is hard with these diseases, especially when you are young and healthy otherwise. Doctors sometimes blow you off. I didn't question the IC because they found papillary lesions and extensive inflammation in cystoscopy, I questioned that it was the only thing I had. And I was right. Go with your gut and try a new doctor, or 5 new doctors, if something feels off.

    This took me years to figure out. Five years ago I thought that this was all hip pain from torn cartilage. The pain didn't go away after a hip scope. I sought another opinion, and they wanted to do open hip surgery, which is a six month recovery time. I scheduled surgery, but two days before canceled it because it felt wrong. And I am so glad I trusted my gut on that one.

    Good luck everyone. Don't give up on yourself. ❣️

  2. #2
    ICN Staff ICNDonna's Avatar
    Join Date
    Mar 2000

    Re: Finally!

    I'm glad for you that it sounds like you are finding some answers. And I hope you feel much better soon.

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