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An IC Action Plan

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  • ICNDonna
    replied
    Re: How I Cope With IC - An IC Action Plan

    Originally posted by Borisnan View Post
    How do you do #5? What treatment. I'm new and don't have any special meds
    If you mean how do you go about evaluation, you may need to see a physical therapist, but you can also ask the doctor who's treating your IC for a pelvic floor evaluation. It can also help to practice relaxing --- sometimes not an easy thing to do, but can be helpful.

    Donna

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  • Borisnan
    replied
    Re: How I Cope With IC - An IC Action Plan

    How do you do #5? What treatment. I'm new and don't have any special meds

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  • sarah57
    replied
    Re: How I Cope With IC - An IC Action Plan

    Great letter!! It helps us all to have hope. Thanks

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  • jvr
    replied
    Re: An IC Action Plan

    I just wanted to share that the doctor I fly my daughter across the country to see is one of the most prolific doctors in regards to IC. He is more hopeful than ever. He is hopeful that Liris and possibly AQX-1125 may actually pass fda approval. This would be the first meds in many years that have done so. He is excited about the MAPP Research project going on and feels that this is going to give them some very valuable insight in the years to come. He said more pharmaceutical companies are showing interest in getting involved. He sent me a really hopeful message recently and I do believe better treatments no doubt will be forthcoming in time.

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  • Dantheman
    replied
    Re: An IC Action Plan

    I note that this was written in 2006 which was 10 years ago and that the treatments haven't really changed in 10 years even though the author was excited about the advances in research and possible eventual cures. I don't feel that any thing has advanced in the last 10 years. The treatments are essentially all the same and no real discussion of long term relief on the horizon.

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  • Aaarrrggghhh
    replied
    Re: How I Cope With IC - An IC Action Plan

    Originally posted by selma View Post
    Me too...but we have to keep faith. Believe me, I know what you mean when you said "struggle every day". Keep fighting...don't give up, please.

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  • selma
    replied
    Re: How I Cope With IC - An IC Action Plan

    Originally posted by Aaarrrggghhh View Post
    I have to disagree. It's changed my soul. I am not the same person anymore. I struggle everyday...
    Me too...but we have to keep faith. Believe me, I know what you mean when you said "struggle every day". Keep fighting...don't give up, please.

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  • Aaarrrggghhh
    replied
    Re: How I Cope With IC - An IC Action Plan

    I have to disagree. It's changed my soul. I am not the same person anymore. I struggle everyday...

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  • jvr
    replied
    Re: An IC Action Plan

    That's a great post Jill!!!! Do you still sell the San Diego conference DVD's? I've seen your YouTube uploads of Dr. Parsons, but I'm betting the complete lecture would be fascinating. I love listening to the experts and research....

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  • dianabritt
    replied
    Re: How I Cope With IC - An IC Action Plan

    Thank you so much for the wonderful information.

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  • arizonababy34
    replied
    Re: An IC Action Plan

    How long does it take for the diet to work?

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  • redapple
    replied
    Re: An IC Action Plan

    This is an awesome post Jill! Keeps me going!

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  • Charmon
    replied
    Thank you very much! I will spend hours on this network!

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  • emilyl90
    replied
    Thanks not only very helpful but a pleasure to read. fills me with a bit more optimism.

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  • ABliske
    replied
    Thank you for the very informative post! You are right about taking the pain killers early. I was talking to my grandma this weekend and she said hers take about 2 hours to work. I feel the same and I'm always waiting. I am right now! It's a rare day I don't need them early on. I was happy to go without a pill until lunch time yesterday. I think it was only because I didn't have dinner the night before but I'll take it. It's only about once a year I can go without them for a day. I would love to be free of my pain killers someday! Need to reevaluate my diet I think although I already avoid most foods that can be triggers for ICers.

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