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I have had IC for 23 years but for years it hasn't been an issue.

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  • I have had IC for 23 years but for years it hasn't been an issue.

    I was diagnosed with IC in 2009. Prior to receiving my diagnosis, I had been struggling with IC symptoms for 9 years. I am doing really well and have been doing really well for many years (at least 5) in terms of my IC. I have other health issues but my IC is not an issue anymore and hasn’t been for a long time. I still have flare-ups but they are short and sweet and they don’t frighten me anymore. The level of annoyance is comparable to a headache on a stressful day or a tired day after a sleepless night.

    I have tried a lot of treatments, alternative and non, and I can share my experience with anyone who is interested. I have drawn lessons that I am happy to share with anyone who wants me to. Basically, I am an IC patient who does not have a major IC issue anymore, so I am a source of hope for anyone who needs it. I know that we all have different trajectories and that you may not be able to replicate mine, but maybe you can simply take a bit of hope from this post and use it. IC does not have to be the nightmare it is depicted it as. It used to be, for me. It’s not anymore and hasn’t been for years.

    I wish there was less pain, and fear, in the world, and more solidarity, compassion, and altruism. I hate that the world of healing has been commercialized to the extent it has, that it has become a business, that is exploiting the people who are hurting the most. People with long-standing and debilitating health issues. My reaching out to you is my little way of trying to change that. I want to be here for anyone who can do with my encouragement.

    If you want to ask questions, I am here for them .. here, or message me. I’ll do my best to answer. If there are many questions, I may do another post with the questions answered. I've just come here to say: I am a success story, at least where IC is concerned, and have been for years.
    2001 first UTI. Symptoms (mainly burning pee) never really disappear
    2001 - 2009 symptoms of UTI with varying results of lab tests. For the first 2-4 years, diff. bacteria cultured at different times.
    2004 - 2008 no more bacteria found in urine. Symptoms (burning pee, burning after sex, burning uretra after peeing) persist.
    Jan 2009 Cystoscopy with hydrodistention and biopsy. IC confirmed. Post-operation complications: pain, symptoms of full blown UTI.
    Jan - March 2009 lab results: Strep-Agalactie, then e-coli (about 3 wks later), then Strep Veridians, then e-coli, then Enteroccocus Faecalis, .... eventually, fed up, I give up on prescribed antibiotics and travel far away ...
    I killed the bacteria through natural means and have chosen to use dietary supplements, rather than medications, ever since. The 2009 Cystoscopy with hydrodistention made my symptoms permanently worse. Whereas before the procedure, my "IC" was a nuisance, that did not significantly affect my every day life, after the procedure I started experiencing previously unknown bladder pain, started waking up at night many times with pain and burning, and sex, previously a source of great pleasure has become painful. All this has had a devastating effect on my life in general: on my sleep, my work, my romantic and sexual life, my social life and my perception of myself.
    I have however many good days and overall, my IC is stable and manageable without medications.

  • #2
    I'm always happy to hear from someone who is doing well in spite of having IC.

    My IC was diagnosed back in 1975 and I also do well. Even though I am fortunate to be among those who are helped by hydrodistention I don't suggest it until other treatments have been tried and failed. For me, diet is important --- it took time to develop my own personal diet --- at the time I was diagnosed not much, if any, thought had been given to a diet connection. Fortunately, now there is an IC diet available on both this site and the ICA site, which was developed with input from IC patients.

    Thank you for sharing.

    Stay safe

    Elmiron Eye Disease Information Center -
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    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.

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