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Does IC always progress??

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  • Does IC always progress??

    Does IC always progress to get worse if it is not treated? I had one of my urogynes I use to see tell me that it will get worse and shrink your bladder if you dont do instillations or hydrodistentions.I also read a few posts where other doctors have told them this same thing. Well that is scary, I mean what happens to people that cannot do instills or the hydrodistentions? Are we all doomed to get worse and loose our bladders in the future? That is scary.
    Jen

  • #2
    Some people do just fine without either instillations or hydrodistentions. If medications and/or just diet works for an individual, there's no reason to think the IC will get worse.

    I know that without treatment I would be totally miserable, but I was totally miserable before I was diagnosed back in 1975 --- and I do really well. It's been 13 months now since my last hydrodistention and with proper diet, I'm still doing okay.

    Donna
    Stay safe


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    [3MG]

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    • #3
      Jen,

      I am one that instills didn't work and the hydro was probably the worst thing I have ever had done. I do fine most days. I have pain most days but have set my mind that this IC is not going to get the best of me. We are all so different on how we handle IC and what IC does to each of us.Please remember that. Not one of us is the same.

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      • #4
        I've had IC for almost 20 years now. I tried hydros and instills only briefly at the beginning of my quest for treatment, and have been using just diet modifications for at least the last 8-10 years. I was miserable before I had a diagnosis and had gone through the trial-and-error of the various treatment options. But now I find that for me the diet works best and the symptoms are much more tolerable - I feel I have a level of control over them that I'd not had initially.

        Although we pay our doctors for their expertise, it's also very important to listen to your own body and use common sense accordingly. Although hydros and instills may have worked best for some of those doctors' other patients does not necessarily mean that's the best option for every patient.

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        • #5
          Thanks ladies.
          I guess I am conerned because for some reason, nothing seems to be helping me with this pain. I have been on the strictest diet for a long time, and I still have alot of pain. I guess that is what is scary. I feel nothing is working for me, but only against me for some reason. Thanks for the replies. It just matters worse for the patient when their doctor tells them that they will definitley get worse if they are not treated with instillations. That is what my last urogyne said to me. He said that IC will progress unless it is treated, and the only real treatment is installations. That is why I guess I am so upset. Thanks again ladies.
          Jen

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          • #6
            I too cannot do hydros either ouchy.. I have gotten worse over the last 10 years..
            'The will of God will never take you where the Grace of God will not protect you.'

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            • #7
              I've gotten worse over the last handful of years, yes I follow the diet, do what I'm suppose to do, etc. The only things that help me is my medications and the hydros, which I seem to have done every 6 months or so. I've tried to do the installs, which the first 2 times I did helped --back in 1992 and 1998 but the last time which was about 7 months ago it didn't.

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