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I guess it wasn't the tap water after all...

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  • #1

    I guess it wasn't the tap water after all...

    I saw the urologist today. He did a cystoscopy with hyrdodistension (without any anesthetic, that was not fun) a urine flow test and a quick bladder scan. He did a thorough internal pelvic exam as well.

    He said I "almost cetainly" have Interstitial Cystitis. And fibromyalgia. And pelvic inflammatory disease. And probably chronic kidney disease.

    So, I've gone from young mother of 3 children with a promising career as a funeral director to an unemployed disease bag with no hope in hell of getting my job back, and my funeral director's license is down the toilet now.

    I think I was stupid to think that just because I got over the abuse and rapes that happened to me as a child that I would have a good life.
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  • #2
    Having IC is not the best news in the world, and it's not currently curable, but it IS treatable. It may take a while to find which treatment options work best for you and which foods and drinks are a problem, but most of us do get there.

    In spite of having severe IC with ulcers, I worked full time for over twenty years with IC before taking an early retirement when my husband was able to retire. You may need to take it easy and avoid stress until you're feeling better, but there are people in all walks of life who have interstitial cystitis and live full, productive lives in spite of it.

    Don't give up on having a good life.

    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.

    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
      Donna I read you loud and clear, and I hope I get to where you were, I hope I'm as strong as you are.

      My big problem is that I just did a year of college for funeral services, but I can't do my internship for my embalming license because I'm just too sick to work right now, and by the time I get feeling better, it'll be too late to start an internship. So, I can't work in my field, but I can't go back to school either until I get all my student loans paid off - because they were government loans.

      So I can't go forward, can't go back, ya know? It sucks. I dunno. Maybe if I get to feeling better I can find a quiet job at a book store.

      *HUG*

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      • #4
        I'm so sorry. I read your post earlier and I just didn't know what to say. I can feel the pain and anger in every sentence. And I'm just so sorry. I'm truly hoping you can find something that brings you relief and returns your dreams to you. They're still there. They're just covered up by pain. I'll hope for you until you can hope for yourself. And lots of hugs.
        Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
        Lexapro-20 mg
        Aciphex
        Ambien-as needed
        Percocet-7.5 up to 3 per day as needed
        Valium-10 mg x2 per day
        Phenergan-1 at night
        Prelief w/everything
        Now recovering from acute pancreatitis

        Currents treatments that help somewhat:
        Heating pad
        Hot baths
        Ice
        Being VERY still while lying down with legs elevated

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        • #5
          Please take care of yourself, and watch that depression PLEASE. Could you maybe work for a funeral director part time? If that is your passion, maybe there is something you could do. Don't know much about the routine, but it would seem there would be one little thing you could do! And maybe when you get to feeling better you could continue on and have that life experience under your belt.
          Don't ever give up. Do you write? Maybe start a book. Sounds like you have a really good basis for a life experiences type of memoirs. I would buy it! Hang in there and explore your options. And never ever give in to this thng. Together we will help to conquer this disease and help each other. Let everyone know how you are. We all care. Jill, wife of Bob

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