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  • 8 Month IC Flare

    Heys guys. I have been in what feels like a severe flare since Oct 2020. I’ve had a two Botox treatments and an injection from my pain specialist, to no avail. I am on Norco for pain, as well as cyclobenzaprine and dicyclomine. I was treated for a bladder infection at the beginning of April but other than that, nothing seems to help. I feel like I’m in constant pain and the narcotics are only taking off the edge for maybe an hour or two. I’m not sleeping well and my body just feels run down and tired. I have also tried sitz baths, the heating pad, an ice pack and pyridium. I did get a bladder installation but it caused so much discomfort that my dr told me not to get them for a while. I also have IBS-C and pelvic floor disfunction and my pelvic floor muscles are so sore that it hurts to urinate. Are there any other suggestions/treatments that anyone can offer to help? I’m willing to try almost anything.

  • #2
    That's awful! The only thing I can think of is to keep a detailed diary, listing time of day, everything that goes in your mouth, activities, what you're wearing, what kinds of personal and laundry soaps --- anything you can think of --- to see if you can identify things that make you feel worse --- and (hopefully) some things that help you feel better.


    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
      Thank you Donna! I’m starting to think it’s partially stress related. I have had some things going on the past few months that may be contributing.

      Comment


      • #4
        I suffer with pelvic floor spasms too. My doctor RX d Valium and Baclofen crushed in a pill crusher, then mixed with 2% Lidocaine then inserted by finger into the vagina. Really helps to calm the spasms. For bladder and nerve pain, I take Methadone, really helps the pain. I hope you find something that works for you.

        Comment


        • #5
          Originally posted by JamiAlex View Post
          Thank you Donna! I’m starting to think it’s partially stress related. I have had some things going on the past few months that may be contributing.
          You may be right --- it's not unusual for stress to cause a flare. You might want to talk with your doctor about something to help ease the stress and help you relax.

          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


          • #6
            After years of dealing with ICI haven't found a cure but have had success in managing the pain. First, review the IC diet, managing your diet helps. Amitriptyline is a prescription medication which quickly reduced my pain. There are some side effects but your body adjusts after a week or two. A year ago I tried a supplement called L-Arginine which was a big help and allowed me to discontinue the amitriptyline. I buy it in bulk powder form on Amazon to avoid any fillers or preservatives that can irritate my bladder. Hope this helps

            Comment


            • #7
              Originally posted by tjm0486 View Post
              After years of dealing with ICI haven't found a cure but have had success in managing the pain. First, review the IC diet, managing your diet helps. Amitriptyline is a prescription medication which quickly reduced my pain. There are some side effects but your body adjusts after a week or two. A year ago I tried a supplement called L-Arginine which was a big help and allowed me to discontinue the amitriptyline. I buy it in bulk powder form on Amazon to avoid any fillers or preservatives that can irritate my bladder. Hope this helps
              Thank you for sharing your success. Glad to know you're doing well.


              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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