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How I recovered from bladder pain (IC)

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  • How I recovered from bladder pain (IC)

    HI there... I haven't been on this forum for over two years.. but someone I knew saw me on it and reached out to me.

    I had a year of hell (pain, despair and depression), as I'm sure you all have had (and more). But in the end I got the treatment that worked for me. Everyone is different, and I'm not a doctor but I feel very passionate to tell my story - in case it can help anyone (especially to avoid expensive and invasive/ painful procedures).

    After trying every treatment and medicine under the sun, I took Hiprex and combined with a pelvic massage wand - adding pressure to sensitive /trigger points with the Therawand . I was warned by Dr Malone that the Hiprex might sting a bit at first, but it was minor. And with at all the muscle treatment it was much better within a couple of weeks, and then gone. I can't be sure how much a part Hiprex played (I'm assuming it did), but i believe that it was the muscle / pelvic floor treatment that made the hugest difference.

    From my own experience and what i can gather, the soreness in the bladder is caused by inflammation and muscle spasms which is the body's way of fighting off infections. Whether there is still bacteria there (I know is up for debate) or the body thinks it is. From my research, the body can continue to have a reaction to bacteria when it is gone, as spasms and inflamation cause more pain and then the muscles spasm and inflame more. It's catch 22 with the body effectively getting stuck like a broken record - especially when you add the stress of this bloody condition in the mix as well!

    I do think perhaps the majority of the issue is muscular - and on the most part it is not an incurable bladder condition. Urologists and doctors are not trained in muscles at all.. and do not put the two things together. I saw a physio who showed me on an ultra sound how my muscle was pushing on my bladder and causing pain/ urgency/ frequency /swelling. My first bit of evidence that i wasnt going completely mad and there really was something causing these problems.

    When i finally saw the NHS after a year of paying for private consultants they agreed with my diagnosis.. they did say that I had problems again they could inject the pelvic floor with botox to stop the muscle going into spasm. But luckily, two years later i haven't had another flare up.

    Anyway i hope this helps, and again I'm not a doctor - this is just my experience. But there are, of course, stats that the majority of people with IC have issues with pelvic floor so I'm just raising the theory that it is perhaps, in many cases, the other way round - and it is the pelvic floor muscle causing IC symptoms.

  • #2
    Thank you so much Annie for posting this, this is SO HELPFUL and makes so much sense! And I am so happy you are pain-free now! True inspiration!

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    • #3
      Thank you for sharing your experience. Pelvic Floor Dysfunction (PFD) is involved in some IC patients and can be helped by physical therapy.

      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

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      • #4
        Thanks for sharing your story.! Visualization always helps me, and I appreciate hearing about that ultrasound. I know I have problems with PFD, but I still spend so much time focusing on something I ate or whether or not I'm taking the right meds, and even a feeling of panic, which makes it worse. Reminding myself what is actually happening helps me calm down, and focus on letting ( and helping) my spasms calm down​​​​​​. I also appreciate your success story with the wand treatment. I haven't had any good experiences with doctors for my IC in the past ( including a urologist and a urogynocologist), so I'm not seeking one right now ( at least I have a pretty helpful primary care doctor right now), but someday maybe I will try again.

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