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Botox please help!

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  • Botox please help!

    Hi
    Well i start with a little about my self i suffer from chronic IC no tablets work or cystistat im 27 i live in England im married with a great husband 7 yr old and got 5 month baby.
    The hospital called today and the next step for me is botox injections im to go in for a day put to sleep have the injection then go home in the evenings leading up to having it done a nurse will teach me how to catherterise myself incase i get retention.
    Im scared for lots of reasons will it work whats the worst that can happen to me my life is pretty miserable . So i really like to hear of people who have any information good or bad any advice or useful links that can tell me more . Also i cant seem to find many people who have had this in England.

    Thanks Emma x
    Last edited by emma26; 05-26-2007, 09:20 PM. Reason: spelling mistake

  • #2
    Hi Emma,
    I'm so sorry to hear that you are having such a horrible quality of life. I feel for you. I am in the same position, I wish my doctor understood that. I have had IC since i was 12 and I'm 21 now. Nothing works, so my doctor finally decided I could do surgery but when he did the last cysto he found that my IC has progressed a lot and now the ulcers are completely covering my bladder, and I'm bleeding out of the ulcers constantly. I was so and confused I didn't know what else to do. I don't think he did either. I was actually looking forward to surgery as sad as that sounds. I thought that it would help me. He doesn't want to attempt to do any other types of surgery because I am the youngest patient in the whole practicead so he thinks I have too much of a life ahead of me to go through surgery so young. I just don't know what to do. He said I could try to do Botox with a different doctor two hours away because he doesn't do it himself. I am not exactly sure what they do or how long you will be in pain for or if the insurance company will cover it. I'm lost. I hope this works for you. Please let me know how it all works out, maybe it will help me make a decision on what to do from here. Good luck. I will be thinking about you.
    Meghan

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    • #3
      Hi
      I've had IC since 1979 and had botox in December as a last resort
      I had to pay $714 just for the botox. It took awhile to work, but got steadily better every day for about 3 weeks. It lasted about 2 more weeks and then just seemed to wear off. I'm not going for a second treatment. Can't afford it for only a few weeks relief. Dr. says it does work for alot of people though. I didn't have any complications from the surgery. It did burn more for a few days after and I felt I could just sit on the toilet all day long. I hope it works for you. Let me know how you make out.

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      • #4
        I had botox done March 2 2007. for the first time. I had tried many other things including the interstim. nothing has helped the bladder except the botox. It has been 4 months today and I am having a flair as we speak I hope the botox is not wearing off yet.
        I had urge and frequency and pain. I peed 28 to 30 times a day. 2 to 3 weeks after a cysto/hydro with botox. I was down to 8 to 12 times a day and feeling great. I would go for it. I was very scared also. but I would do it again for the relief I had. They say the more times you have it the better it feels and longer it lasts.
        My insurance will not cover it so I am not sure if I will be able to do it again. I wish it was the insurance people going through what we do. maybe things would move much faster.
        IC/IBS Hopeful : I had my bladder removed on September 29, 2008 for me but I am also so happy I have no regrets

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