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  • new here frustrated

    I have had this pain for about 4 years and no one ever suggested that this could be IC until yesterday. Everything fits. the pelvic pain. urine frequency and bladder pain. It has taken over my life. I am on neruontin, ativan, tylenol , antidepressant and now they are talking spainal cord stimulator. I had a cystoscopy 2 wekks ago but nothing was said because the doc was looking for a blockage and did not mention that I could have something else just sent me home in pain. I have another appt on Sept 19 but that is a long time away and I don't know if the urologist will even be receptive. My regular doc mentioned the IC but would not give me the Elmiron because he wants the uro doc to diagnose me.
    Any suggestions would be appreciated. I am so glad to be here

    Sue

  • #2
    to the IC Network. One thing you can try while you wait for your appointment is the IC diet. You'll find the latest food lists at the link in my signature below. Some people with IC find that single step helps more than any other.

    Usually the interstim is not recommended until other treatments have been tried and failed. (I assume that's the spinal cord stimulator being suggested). If you aren't feeling comfortable with what you're being told, it's always okay to seek a second opinion.

    I hope you get some answers soon. Not knowing is not fun!

    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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    • #3
      frustrated and thanks

      thanks for the encouragement. No I don's want the spinal cord stimulator unless nothing else works. I have to see the urologist again to know if he will try anything else. this is being offered by a pain management doctor so they are pushing for it.
      I am going to look at the dietary recommendations

      thanks
      Sue

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      • #4
        Donna well said :Usually the interstim is not recommended until other treatments have been tried and failed. (I assume that's the spinal cord stimulator being suggested). If you aren't feeling comfortable with what you're being told, it's always okay to seek a second opinion.

        I finally saw another doctor for a second opinion when my Uro mentioned the interstim to me, I thought, I know theres other treatments out their that he certainly hasn't tried yet( thanks to this web site). I found a new doctor, which specilized in Uro-Gyno, he started me on meds that I am presently taking and increased my Elmiron to 3 times daily that was about 6 weeks ago, I've had 3 bad flares but other then that I'm getting back to myself. What I'm saying is it might be worth seeking out another opinion it was for me.

        IC diagnosis 3 weeks ago.
        Vesicare 10 mg once daily
        IBS and Gerd-Zegerid
        IC diet
        Elmiron 100 mg three daily
        Hydroxyzine 25 mg at night
        Amitriptyline 10mg at night
        Diovan 60/12.5 daily
        Topral 50 mg daily
        Zoloft 100 mg at night
        Klonopin .5 twice daily

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