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  • cbsummer
    replied
    I am for trying new ideas. I have tried them all. I was on elmiron befroe it was fda approved. I feel that someone has to take the first step and out there is something that will help. There will never be success if poeple aren't willing to experiment. Elmiron didn't help me but has helped others. I am now trying bcg yes it is very uncomfortable (I try not to use the word pain ) but if it works then the few days of **** will be worth it. I think when the bladder is concerned all treatments are not " a piece of cake" We go in for tratment because we are not able to handle our pain and want it to go away. Maybe it's the gypsy in blood in me(mom always teases us about that not sure if its true)Others don't feel the same way as far as letting their bodies be used by drug companies as guinie pigs but thats what make the world go around we are all different. I wish everyone will find a treatment that works for them.

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  • auntiedeb
    replied
    Hi, I didn't respond to your poll either. I am like Donna, willing to try anything first. I am on new meds and will be going to the pain clinic at the end of the month. I just need to see what will work for me. My urologist also suggested that I go into Boston MA to see a urologist who deals with this ic. I have heard good and bad about this dr and I am afraid to go see him. I am just waiting and praying on that. I hope this helps you. Hope you feel better soon. Hang in there. There is always hope. I am willing to try anything too. Just to end the pain and to deal with it.

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  • ICNDonna
    replied
    I didn't respond to your poll because I couldn't really choose either response. New treatments don't necessarily cause suffering; I am open to trying new things. If I hadn't, I certainly wouldn't be doing as well as I am now.

    Warm hugs,
    Donna

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  • sanctuary
    started a topic why bother?

    why bother?

    I just feel really bad, but have to wonder..I see all the time where we are desparatly trying new things for our iC. I used to try everything, even experimental drugs w/Yale. but no more. Until there is a cure for IC, I'm only treating the main symptom I have PAIN!! No more installations for me. The bladder not only suffered from them,but so did the urethra suffer too. Now it's in trouble from so many catherters and bad care..that hurt it, it's in addition to IC pain. I'm not doing any more installations, and if I ever did, the first time it made me worse I'd quit the treatment. I wish all of you out there luck, I truly do, but why take another treatment if the first one makes it worse. I know we hope, but why add to suffering? Sanctuary
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