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  • Management of IC

    I was diagnosed with IC in 2005. I felt like I had good control over my symptoms till about 2 years ago. I have done the bladder instillations, a few hydrodistensions, I am on the meds that they recommend and I am just not getting any relief. I am starting PT tomorrow. I am frustrated cause I feel like I just don't have good management and I feel like the urlogists dont understand. They are saying the next step is to go to a pain clinic. Does anyone have any suggestions?

  • #2
    Hi Jess
    I'm not where you are at but I'm sure others will respond on the topic of pain. Can you list what meds you are currently on?

    Have you tried the IC diet? Here is a link to it http://www.ic-network.com/diet/dietcheatsheet.html
    It might really help you.
    Cindi


    Gelnique for frequency/urgency - works great
    Macrobid after sex
    Prilosec, continuous birth control pills
    synthroid .088mg, mucinex-d, restasis

    Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

    Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

    IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
    AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
    AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
    Great treatment flowchart on page 19 of the pdf

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    • #3
      Hi Cindi,
      I have done the IC diet, I am very careful about what I eat. I am on Elmiron, gabapentin, vesicare, hydroxizine and birth control. I also do Prelief and Javacid. I have been on them for almost a year.
      Last edited by Jess_burk; 02-09-2011, 01:50 PM.

      Comment


      • #4
        Have you tried elavil? (amitriptyline). Alot of people here swear it drastically reduces their symptoms, I'm thinking of talking to my UG about it when I see him in a couple of weeks.
        Cindi


        Gelnique for frequency/urgency - works great
        Macrobid after sex
        Prilosec, continuous birth control pills
        synthroid .088mg, mucinex-d, restasis

        Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

        Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

        IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
        AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
        AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
        Great treatment flowchart on page 19 of the pdf

        Comment


        • #5
          Hey Jess, welcome, sorry you are here, and will never say we (hub and I) have the best advice, but you will find a lot here. Will say uros typically do not like to prescribe the pain meds.

          Find yourself a good NP or GP or a lot of gals on here find good uro/gyns, and educate him/her, give em a week and go back. This thing HURTS, said on here before it's like your bladder lining is raw burger and everytime urinine hits it, it's acid on a wound. Give your docs web sites so they don't have to spend a lot of time searching, we printed stuff out for Bob's male NP, and he really appreciated us saving him some time, altho he went online and looked around himself.

          Uros job is to solve a problem cure it or operate on it. Even when my Dad had end stage prostate and bladder cancer, his internist was the one who was in control of the pain. I may be totally wrong, but uros may be more regulated in what they prescribe. Should have researched that before I said it, but some doctors are limited with narcotics. May want to look into your state regulations. Pain clinics apparently work with a lot of people, but you want to find one that is familiar with IC. Ask questions before making your appt. so you are not even more frustrated. It seems that when the pain is under control, IC can be dealt with better by the patient, and make better decisions. When that pain is at a level 10, no one can think straight.

          And the diet, watch the diet, some actually get under control simply with that and a few other mimor meds. Wish you much luck in your search for relief, it is out there for many. Take care, let everyone know, we always want info, you never know if you are the one who finds the miracle doctor. Jill, wife of Bob

          Comment


          • #6
            I would see the pain management specialist --- many times just lowering pain levels will help get the IC under control --- at least it can help you feel better.

            Sending gentle hugs,
            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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