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Bad flare after a year of remission (long vent)

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  • Bad flare after a year of remission (long vent)

    I used to write here more often when I was diagnosed as I had quite severe pain. I am guilty of disappearing once I got back to feeling "normal" or as close as I have been since diagnosed about 4 years ago.
    I went through treatment options and eventually found botox injections to the pelvic floor, combined with physio, and oral medications worked well for me. I steadily improved with flares on and off until about a year ago I hit basically remission. I withdrew from a lot of medications, I even went on a trip to europe in June and got a casual job as a nurse. Fast forward to December. I went and got my botox injections done December 2nd, all good. 2 weeks later on December 12 I am at work and a really bad flare hits me. I didn't think anything of it and assumed I ate something off or maybe got too stressed at the job. I took my pain medications and went to get my hair done. The flare kind of dragged on to the next day. Then it tapered off. Then a day later (4 days after the initial onset) it exploded. I have had to call in to work 3 days in a row, I've been stuck in bed or on the couch with the heating pad and ice. I have had to take my pain medication for flares but it isn't helping this time. I went to get checked for a UTI 2 times. The first was negative, the second came back with trace white blood cells. I took a dose of monurol antibiotics (it was a sachet meant to be taken as a one time dose) yesterday. Today is now day 8 with no signs of improving.
    I'm posting here because I am having really bad anxiety as a result of this long of a flare. I don't really have any idea what caused it,I've never had a delayed flare response like this or this strong from botox before. I don't know if it was really a UTI either. I'm basically scared that I messed up my progress and will now backslide to what it was before my remission. I had a full blown panic attack thinking about it this morning, which has never happened before.
    Any advice or kind words are appreciated, just seeking some reassurance that this flare doesn't mean I'm going back to what I was.

    ❤❤
    Diagnosed IC and PFD February 2016. Before this I had minor IC symptoms for 6 years.
    Other diagnosis: IBS, Chronic Sinusitis & Rhinitis, Iron deficiency

  • #2
    It could be due to stopping medications --- it depends on what medications you were taking. Did you stop taking meds a short time ago? If you just took the monurol yesterday, it might need more time to be effective.

    I wish I had a real answer for you. I suggest you review your history of what you did that resulted in remission --- you may need to repeat some of those things. It can be important to keep a record of treatments so you have a picture of what makes you feel good and what doesn't. I hope you feel better very soon.

    Just remember --- you were in remission before --- and you will get there again.

    Sending healing thoughts,
    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

    Comment


    • #3
      Hi ICNDonna thank you for your response!
      I stopped taking elmiron over a year ago, and I'm scared to restart because of all the eye toxicity news that has come out on it.
      I lowered my dose of hydroxyzine and stopped a couple of meds including urelle but that was all over 6 months ago.
      I got a call from the dr. That says my urinalysis shows glucose and ketones in my urine. I thought it would be from stress and not eating properly, but the dr. thinks I might be diabetic. I'm 24 years old and no one in my family has diabetes. He did prescribe me a pill for possible yeast infection and now I'm going to get my blood sugar checked.
      In your experience, or anyone else's, can a possible yeast infection cause a flare up?
      I appreciate you taking the time to read this ❤ it does mean a lot to me knowing there are others out there who understand what this is like
      Diagnosed IC and PFD February 2016. Before this I had minor IC symptoms for 6 years.
      Other diagnosis: IBS, Chronic Sinusitis & Rhinitis, Iron deficiency

      Comment


      • #4
        I’m in a flare also so I know how you feel. It’s s scary and we start to panic thinking we won’t get well again...but you will hit remission again it will just take some time. Can I ask did you just do Botox once for the pelvic floor?

        Comment


        • #5
          A yeast infection can definitely cause a flare. It's good that you're planning to have your blood sugar checked. I developed diabetes as an adult. Fortunately I am able to keep my numbers where they need to be.

          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

          Comment

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