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Hello again longtime no see!!

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  • Hello again longtime no see!!

    HI all

    I had written a long posting but lost the lot Anyway my story in brief, I did post a few times pre diagnosis but got scared to continue looking. I have been diagnosed with IC in Feb with cystoscopy with hydrodistension (800ml) is that a lot?

    I am in the middle of a flare again I think the hydrodistension is failing now due to see Uro next week for follow up. I was prescribed Elmiron read with interest how you guys get on with it....I am not sure having experienced unusual bleeding that my uro says come off it and get further investigations to why I am bleeding...can't face been poked and prodded by yet another consultant but I suppose I have no choice, I do have many other problems: Hemiplegic Migrane, Hashimoto Thyroiditis, GORD, Hiatus Hernia :woohoo: What is the next step you have general anethestic for this cos I don't want to do that...after my cystoscopy I ended staying in hospital for 2 weeks cos I had an hemiplegic migraine triggered by the anthesetic.

    I follow the IC diet best I can (Finances permitting).

    Anyway guys nice to be back.


  • #2
    Hi and welcome back!
    Sorry the hydro seems to be causing you more pain. It did the same for me. Maybe because I was distended to 1275 ml? So 800 doesn't sound like a lot to me LOL, it just depends on the state of your bladder, I guess, how much the uro distends.
    Well, I commend you for your courage, no one gets to go messing around with my bladder ever again.
    Best wishes Hope you feel better soon.


    • #3
      Hi Von! I'm new here, but I'm sorry you are back and not feeling well. I am doing instillations in the doctor's office (weekly) that has Elmiron, lidocaine, bicarb, and saline. It seems to help for a little. I have been on oral Elmiron for 6 weeks, so I know to wait it out. I haven't had any side effects from it thankfully.

      I sure hope you find something to make you feel better!
      [SIZE="1"][B]Be well, Alyssa :hi:[/B]