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  • hello

    Hello my name is kerry, I am from cheshire in England, I have recently been diagnosed with IC. I have suffered from the effects of IC for about three years before diagnosis, I had distention of the bladder in december 2010 and have not been able to go back to work since, I didn't think I would be out of work for this long I thought distention would help my symptoms, not make them worse.However after the distention I was rushed back into hospital and put on a catherta, morphine, codien, paracetamol, buscopan, diclofanac, and movicol. My urologist said she was not suprised that I was take back in due to this diagnosis.

    I am taking pain killer such as codien phosphate, paracetamol, diclofenac, but they only help for a few hours, I am trying the IC diet at the moment but I am also lactose intolrant, so my diet is already restricted.

    My urologist has suggested Elmiron or bladder installations, but reading up on these I have heard they are very painful so I will not be going down that route feel quite lost at the mo

  • #2
    Elmiron is an oral medication and many people take it without any side effects at all. It can take six months or longer to become effective, but those who are helped feel it is worth the wait.

    Instillations can be painful, depending on what solution is used --- or they can be very soothing. Do you know what is in the instillation your doctor is suggesting? We have at least several people who post regularly and do their own instillations at home to help keep pain levels low.

    Sending welcoming hugs,
    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      hello

      thank you for you kind hugs and welcome, yes the instillations are Cystistat, do you know anyone who has had this one or have you had it yourself ?

      It quite devastating hearing you have a chronic disease and there is no cure, but it would be nice if more general doctors were aware and at least sympathetic towards IC, I feel very lost at the moment with no light at the end of a very long tunnel, I do not know of any support groups in England or if there is one that even exists. Let alone what treatment are available to me.

      Comment


      • #4
        I did find one resource in England that might be able to help:

        England
        COB Foundation
        76 High Street
        Stony Stratford, Bucks MK11 1AH
        United Kingdom
        tel/fax: 44-1908-569169
        http://www.cobfoundation.org
        [email protected]

        Donna
        Stay safe


        Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
        Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

        Have you checked the ICN Shop?
        Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

        Patient Help: http://www.ic-network.com/patientlinks.html

        Sub-types https://www.ic-network.com/five-pote...markably-well/

        Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

        AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

        I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
        [3MG]

        Anyone who says something is foolproof hasn't met a determined fool

        Comment


        • #5
          Welcome

          Welcome to the forum lots of info here stick with the IC and lacto Diet.
          I have DMSO instils they do not hurt me. But it doe's take about the third instil before I start feeling a difference.
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