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  • IC Cure

    A friend told me today that her urologist told her that her only options were hydrodistention or Elmiron. She said the urologist told her that if she took Elmiron for 2 years that she would be cured from IC forever. The urologist said that after 2 years of Elmiron the bladder lining had repaired itself and was normal. I didn’t say anything but I thought it. Have any of you heard this?
    TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
    My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

    Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
    Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
    I post to encourage and offer total support for rescue instillations.
    Find me on facebook: L. Clark Thomas
    Louann

  • #2
    I can't believe a urologist actually said this. She must have misunderstood.

    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
      That's exactly what I was thinking, but I didn't say it. I guess we will wait and see.

      She has been on elmiron for almost a month and has had great results. It may be that she does have her "cure".

      I just didn't want to be the "little raincloud" over her sunshine.
      TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
      My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

      Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
      Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
      I post to encourage and offer total support for rescue instillations.
      Find me on facebook: L. Clark Thomas
      Louann

      Comment


      • #4
        My urologist said that if you stop Elmiron......you lose what you have gained as far as pain and lining. I hope that she just misunderstood and not that her dr. actually told her that! What a misjustice that would be! Roxie

        Double Spinal Cord Stimulator surgery 8/09
        Unsuccessful MiniArc sling surgery 12/07
        Dx'd Hypothyroid
        Dx'd Chronic Axonal Neuropathy & Myopathy
        June 2007
        Dx'd IC May 2006 (after suffering for 25+ yrs!)
        First Cysto 1979
        First Hydro 1981 (Many treatments since then!)
        Collagin"Durasphere" injections for urethra
        Gall bladder surgery Aug. 2004
        Gastric Bypass Dec. 2004
        Dx'd: Barrett's Esphogus July 2004
        Dx'd: Vaginal Atrophy 2005
        Bladder surgery 2000
        Dx'd: IBS 2000
        Hysterectomy (fibroids) 1999
        Laminectomy 1989
        Dx'd: Degerative Disk Disorder 1989

        For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
        I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

        Comment


        • #5
          My urologist said that I will be on Elmiron for the rest of my life. Elmiron does not cure it but helps with coating it and get some relief. Maybe this person misunderstood the doctor or the doctor is not very updated with IC. Hope your friend do get some relief with it though.

          Sending hugs, Trishann

          Comment


          • #6
            Unfortunately there are urologists out there that do not believe IC is a valid condition and so don't really know anything about it. I had a urologist tell me that removal of the bladder was my only treatment option - and my symptoms are relative minor compared to some of the people who post on these boards.

            It's so important that we as patients (with IC or any other condition) take the time to do some research ourselves and not just blindly trust anyone with an MD at the end of their name. Doctors are people too. Most are great, but as with any profession there are some that are less than the best. And the networking of patients like on this web site is so helpful with obtaining information.

            Comment


            • #7
              I think the cure for IC or should I say when there ever is a cure, it is going to be different for everyone. I dont think everyone has the same IC. It it caused by different things I think. I believe mine is autoimmune in nature, though I could be wrong. Elmiron is only known to help like 30% of people, thats it. It does not have a huge success rate from what I have read.

              I would say that it depends on what is causing the IC to begin with. If the thing that is causing her IC gets treated and cured, then maybe the bladder will heal. This disease is so misunderstood, even by MOST doctors. They dont have a clue what IC is or what causes it. They are just guessing like everyone else. The human body is just to complex and we dont have all the knowledge to understand what makes these things happen to us or how to fix them.

              I dont like to say that there is NO cure for IC, rather that it just has not been found at the moment. And again, I think the when eventually there is a cure, the cure will be different for all. That is just my opnion. Also, Elmiron is only known to put a temporary protective layer in the bladder, like a coating. But if you stop the med, then the coating is gone. That is why it has to be taken three times a day otherwise it would wear off.
              Jen

              Comment


              • #8
                During the clinical trials before Elmiron was approved by the FDA, the percentage of people who found to be helped was 38%. There are some medical authorities who feel the percentage is a little higher than that. The great thing is that many among that 38% find it almost completely eliminates their symptoms.

                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


                • #9
                  I have been on Elmiron since 1997; and I expect to be on it the rest of my life.

                  Comment

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