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Bad flare after 3 years (rant)

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  • Bad flare after 3 years (rant)

    Sorry to everyone but I just need to rant.
    I was diagnosed with IC in 2012. It was a terrible year and it took me months to get it under control, but I slowly did. It basically stopped my life (I was 28) and I slowly got it back. I followed the diet, figured out my triggers, and built a life around IC. Eventually I was mostly symptom free with only very minor flares that only lasted hours. My last big flare was 3 years ago, in my first year of medical school. I struggled through it and miraculously did not have another one during that time. I know how lucky I am in that respect. Despite the lack of sleep, stress, and weird diet I during that time I was ok. Now I'm a resident and a week ago another flare began. And it's awful. Im not entirely sure what brought it on but I think it was a combo of stress and a poor candy choice. My problem has always been that my flares don't seem to respond to anything and last 4-6 weeks. I have frequency, some urgency and pain/pressure. Of the subtypes I seem to be more of the pelvic floor, but I have some of the bladder side as well. I take elavil and hydroxyzine. Ive tried tylenol and advil (ive also tried avoiding them), I've tried cysta-Q, straight quercetin, Gabapentin, muscle relaxants and none seemed to make a difference. Ive tried heating pads - which do help. But the pain is so intense sometimes and there is no break from it. I think there is an element of PFD, but the wait time for a therapist is a month and a half. I'm feeling desperate because I have to be able to do my job and that is so hard when you're always thinking about peeing or pain. I don't want to go on leave, I dont want to have to stop being a doctor, but I don't know what to do when nothing works to manage the flare and sometimes all I can do is just sit and cry. And I know I'm in for weeks of this. And no one else really gets it, except all the lovely people here. I wonder if there is anything else people have thought of to manage flares. I live in Canada so some things are not easliy accessible to me.
    Thank you for listening.
    IC is a demon.

  • #2
    I've found something that is working great for me. Methenamine. It is available in a RX drug called HIPREX. It is not an anti-biotic, it is an anti-septic. You can take it long term and it will keep the infection in check. I know everyone says IC is not an infection, that anti-biotics have anti-inflammatory properties and that is why you feel good taking them, but I've been on full dose HIPREX for 2 weeks and I feel nearly cured. I hope this continues!!


    • #3
      Have you tried plain baking soda in water? I have to control sodium, but 3 or 4 Tums is my go-to first (as a substitute for soda) in a flare. NSAIDS are a problem for many ICers so you might want to rethink the Advil. I know that stress can be a huge problem for MOST of us --- some find that low dose antidepressants are helpful --- our doctor explained to us that they interfere with the pain receptors in the nerve system --- plus they can help us relax.

      You will have better days. You have controlled your IC before, and you will again --- look at how far you have come. We need doctors who understand their patients; you WILL get there!

      Sending healing wishes,
      Stay safe

      Elmiron Eye Disease Information Center -
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      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:


      Diet list:

      AUA Guidelines:

      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


      • #4
        Hi Aeja! Please let us know how you are doing. I know flaring sucks and working in the medical field (or anywhere really) is especially difficult when you have a flare like this. If you ever need a venting buddy feel free to message me ❤
        Sending healing thoughts
        Diagnosed IC and PFD February 2016. Before this I had minor IC symptoms for 6 years.
        Other diagnosis: IBS, Chronic Sinusitis & Rhinitis, Iron deficiency


        • #5
          Bladder instillations with lidocaine, bicarb and heparin. Do 1 a week for 8 weeks. Results always appear for me AFTER I have done the course of treatments.