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Diagnosed in 1997

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  • #1

    Diagnosed in 1997

    Hi im Christine,
    I was diagnosed with IC in 1997, and was pretty much told that it is so rare that they is not enough studies or and cure for this disease, there I was to just wait it out and suffer through the pain!
    I have been reading alot of your stories and I thank you all for all the interesting facts given, so I guess my questionsw is : where do i go grom here and what do i need to find out or how do i go about getting information on new theropies and i guess just what can i do!
    Anyones opinion or advise w oudl be much appreciated
    thank you
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  • #2
    to the IC Network.

    Fortunately, there's a support group in Davenport. If you scroll to the top of this page and click on "Professionals" you'll find contact information for the group. Many times that's the best place to find information about treatment options.

    Warm 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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    • #3
      Hi Christine, I was diagnosed in 1997 also. Thankfully, the 2nd urologist that I saw for my symptoms was knowledegable about IC back then. I still see the same one and just saw him recently for a flare. There are many treatments available for IC, alot of them you will see described in these forums. If your urologist or doctor doesnt know about them then you can find someone who is knowledgable of our disease. That doctor that told you that in 1997 was very wrong, unfortunately, IC is not at all rare. Often women were misdiagnosed as I was at first. I was told that I had urethritis and the urologist did painful stretching of my urethra and gave me antibiotics
      Diagnosed with IC in 1997. Currently taking Elmiron, Hydroxizine, Aleve, Ditropan, Glucosamine, Chondroiten, MSM Quercitin, Vitamin D, Probiotics, Co-Q 10. Also working on bladder retraining

      “The art of healing comes from nature, not from the physician. Therefore the physician must start from nature, with an open mind.”~ Philipus Aureolus Parcelcus

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