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Severe IC dx 2yrs ago after 15+ yrs of pain

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  • Severe IC dx 2yrs ago after 15+ yrs of pain

    Hi everyone, I'm posting my story for the first time, though I have been reading and learning from this site for quite a while. I am a 36yo mother of 2. I have had chronic pelvic pain for 15 yrs. I have had more surgeries than I can remember with the end result being a complete hyst at age 30. After so many years of pain and Drs I was finally blessedly dx almost 2 yrs ago. My first urologist was very kind, and I saw him through several cysto-distentions, and a long cycle of DMSO instillations. My family dr continued to rx narcotic meds, and suggested I see a urogynecologist. It has been so amazing to be understood and treated by a knowledgeable dr. He explained how IC and pelvic floor dysfunction go hand in hand, and dx me with pfd to be treated with pelvic floor physical therapy, trigger point injections inside the vagina (yes they hurt) and elmiron instillations weekly. I had some relief, but was still taking narcotics so I asked to be referred to a pain mgt dr.
    In December I had a spinal cord stimulator placed. IT HELPS ME WITH PAIN CONTROL! I did a lot of searching and praying before making the decision, but now 3 months out I would do again. If anyone wants to talk about the scs, please let me know. I had seen very little here about scs (not interstim), so I wanted to post.
    Right now I am having the a bad flare, and once again turned here for support. Thank you to everyone who is willing to share their time and knowledge.

    Marie

    Current meds:
    Elmiron200mg 2x day
    Toviaz4mg daily
    Vaginal Valium suppositories
    Cymbalta to 60mg 2xday
    Ativan 1mg 2x day
    Premarin
    Synthroid
    Trazadone
    Phenegran for nausea as needed
    Oxycodone 5mg 1-2 4x day prn.

  • #2
    thank you for taking the time to post and provide information. i know the pain of a flare and some days just getting out of a bed is a challenge.


    i have no experience, strength, or hope to share but wanted to say thanks for educating us.


    have the best day you possibly can


    praying for the cure

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    • #3
      Thank you for sharing your experience. It's good you finally decided to post.

      Sending 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.

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      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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