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Ladies, I need your help please

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  • Ladies, I need your help please

    Hi i am 32 years old and have been diagnosed with IC for 3 yrs now. I have done every DMSO that there is, I have had 2 hydrodestintion, done elmiron,atarax, amityprtylin, neurotin, imipramine pretty much every thing there is. In 2009 I had a complete hysterectomy and had a hydrodestintion also. In 2009 the hydrodestintion did not help, my IC was only on the back of my bladder. Since then I hae had a few more problems arrise. 2 weeks ago I had a vestibulectomy, a pudendal nerve block, and a cysto w/ hydrdestintion. My pudendal nerve is better my vestibulectomy well we will see when I am completely healed. But I honestly dont think that the hydrodestintion worked yet again. For the last 9 monts I have severe pain and alot of blood in my urine. My Dr said That when I had the hydro 2 yrs ago my IC was only onthe back of my bladder and 2 wks ago I found out it has gotten progressively worse ot now covers my entire bladder and though the dr did not see any ulcers he said that I have alot of glomurations and mucosal hemmorahges Im not sure if here is any ddifference in the tw.I am thinking that maybe I need to go down the all natural path because nothing else works or me. Can u guys please help me and tell me whats out there and what has worked for you. I am very desperate at this point. My next step is an interstem and Im not real sure if I want that. I have 2 children and one is a very strong willed 3 yr old. I just want a little bit of my life back, I want to be able tofeel like playing with my children again. I want to be able to work in myflower beds and my gardn without pain and do my quilting without guilt because the house is in such disarray. Thatnk u for your time and opinion. Hope u guys have a wonderful pain free day.

  • #2
    You are still in the recovery time for your surgery --- I hope you feel better soon. How long were you on elmiron? It can take six months or longer to become effective. I know of at least one person who found it took more than a year.

    I hope you feel better soon.

    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
      ICDonna, I took elmiron for a year with no results. It is my understanding from my Dr that I should not still be flaring from the hydodestintion. I called them yesterday and told them that Istill had blood in my urine and my flare was horrible and not easing up at all. The only thing they had to offer me was pyridium, which does not work for me, I told them that I had been taking utira-c that is the only thing that gives my poor little urethra any releif. The pain meds they give me is not really working at all. Im just soooooooooooo tired and fustrated. I know that everyones treatment is different. Thank you for your response.

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      • #4
        I can tell you what helped me but as we all know everyone reacts very differently. I took 500mg Quercetin 2x day along with hyaluronic acid capsules, glucosamine, probiotics, epsom salts baths, baking soda baths, pelvic floor stretches done daily, prelief with certain liquids and foods, baking soda shooters when needed, along with the diet. I also took benadryl and surmontyl for a while so not sure if it was the combo that helped me or the natural supplements. At this time though I don't need the meds and am only taking the supplements and using the diet. I have been in some kind of a remission for a good while now with only slight frequency at night.

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        • #5
          Thaks earthlady, I had to go today for a rescue instalation, because my pain is so severe. I talked to the dr about using natural meds and he thought it was a wonderful idea! He said he has had patients to go into remission using natural things so im keeping my fingers crossed because nothing else has worked for me Than you so muchfor answering. Good luck withyour future

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          • #6
            I hope the instillation gives you some relief. It's nice that your doctor thinks it's a good idea to try supplements.

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