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Any tips???

Posted , 5 users are following.

rosie21831
rosie21831

I have just been diagnosed with Interstitial Cystitis. In a way I am so pleased because now I know what is 'wrong with me' and why I've had these problems for the last year. There seems to be a lot of information and help and I'm definitely glad of the stuff I've read regarding diet. I have very little alcohol and no caffeine anyway. I just hope that any treatment I have will 'cure/solve' this as it seems some people suffer with this all their lives and i really dread the thought of that.

Any advice or tips to someone a bit worrier?!

Many thanks

0 likes, 5 replies

5 Replies

  • rosie21831
    rosie21831

    Posted

    A bit worried rather!!
  • MTK
    MTK

    Posted

    Hi rosie21831

    I'm sorry but I can not really help you. As I have been missed diagnosed and only found out twos weeks ago. I still have all the same issues and some but I have now requested a 2nd opinion so I'm off to see a lady at Attenbrooks. I will post again once I know where I am. Good luck.

  • rosie21831
    rosie21831

    Posted

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  • lara62826
    lara62826

    Posted

    Hi all, I cannot tell you how relieved I am to have found this forum.

    I am so miserable right now I don't want to live but I have 2 children so must find a way of coping.

    The symptoms of my ic came on so suddenly I thought I had cystitis so I asked for a sample to be checked (twice) and both times it came back clear with no bacteria.

    So I literally googled cystitis without the bacteria and up popped IC

    I ended up in a&e with the pain and I told them I suspected IC so they prescribed me amitrpilyne which did help a little.

    I was then referred to a urologist who said it sounded like I had over active bladder but I just didn't buy this as my symptoms are textbook IC

    I had a cystocopy 2 weeks ago and low and behold I have blisters on my bladder wall which are indicative of IC

    I have my appt next week to discuss this and I am praying they give me some advice to help!

    My worry is that since I have had the cystocopy I have been worse, has anyone else experienced this?

    Also, does anyone know of any support groups to help sufferers cope with this?

    If not I would like to consider setting one up as no one understands like an IC sufferer does!

    Look forward to hearing from you! Xx

  • MTK
    MTK

    Posted

    Hiya,

    I was diagnosed with IC and I say that loosely, as I was told a few weeks ago the evidence of my diagnosed was not strong enough to confirm IC. You need to be mindful it can take between 2-6years for a confirmed diagnoses.

    When I had a cystocopy my symptoms increased post the procedure. I also had Cystistat for six weeks and my symptoms also increased. But you have got to remember that does not mean because theses treatment did not work for me, they will not work for you.

    I would advice you to go onto the COB foundation website and become a member where you will get no end of support. Each month you will be able to ring and chat to the nurse with any concerns you may have regards your own symptoms.

    Hope this helps.

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