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I'm 35 years old. IC and possible BOO for 29 years!

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  • I'm 35 years old. IC and possible BOO for 29 years!

    So I have records from my old PCP showing that I started complaining about my bladder at age 6, I am only 35 now. It has been a problem since childhood and gotten worse and worse every month, every year, I need serious intervention. Now I suspect Bladder outlet obstruction which I didn't even know existed, after seeing about 50 urologists many top IC specialists because the only medication to help my bladder has been rapaflo; I have dysautonomia so I can't have my blood pressure lowered any more but a muscle relaxant helps a little. I feel constant pain in my urethra and when I took the rapaflo, I felt like I could empty completely. Now for IC, the only things that help are a strict diet, I have nothing for pain and it is excruciating, nothing for urgency, I'm pretty much latched to a heating pad and even then I don't have long. Now I've literally tried everything. I have an interstim, all the medications, pain medication doesn't even help and now they won't give it anyway, pelvic floor PT, you name it, I've done it. I am at a point that not only has my bladder ruined my life it is little a life threatening situation b/c I can't get treated for severe dysautonomia/autonomic dysfunction and I can't sleep or rest and I was diagnosed with blood cancer last year (unless I drug myself so I'm over sedated). With the dysautonomia I haven't done well with medication or certain meds like midrodine affect the bladder and they won't give it to me (my HR is very high and blood pressure low) so they keep telling me to drink a lot but you guys know with severe complex IC that is not an option, I literally don't have the energy to hardly get out of bed much less go to the bathroom all day. Secondly, I need electrolytes: problem #1. the drinks work but they have citric acid which flares and burns my bladder #2. all electrolytes have potassium which send me into HORRIFIC flare. I need saline iv's, even that irritates my bladder so at this point in time I'm mostly bed bound, when I do get up most of my energy is zapped going to the bathroom. This is a situation where I think I have to have surgery in order to properly fight the cancer AND I need to be able to treat the dysautonomia, which isn't happening and it's quite quite disabling. Also, if I leave my house for like 20 minutes and my bladder fine before, I come home feeling full in excruciating pain and have trouble urinating at all unless I had the rapaflo which isn't an option. I recently saw a doctor out of town that trained at a well known reputable school and he is having me try stuff I tried over and over that I tried as a kid, he doesn't listen to me at all, I told him about rapaflo and he quickly said "that's placebo", I told him about not being able to eat any fruit (which is my favorite), caffeinated drinks, carbonation, spicy, anything weird with a lot of ingredients and he said "some people are sensitive to foods" yea right, it's called IC. I'm convinced of the BOO but nobody has ever looked into it, my family is falling apart, I'm fighting for my life, but I'm getting nowhere with this bladder and I'm scared of doctors, I have ptsd from seeing so many. I just think after 30 years it's time for surgery but I don't know where to go, every IC doctor I've seen doesn't listen about the rapaflo and they deny me surgery even though at this point it's a necessity. Does anybody know what I can do? All I have is a lot of sedating drugs to knock me out at night, and a very sedating muscle relaxant. I've been seeing doctors since I was 6 so I'm tired in an unexplainable way. I live in North Florida.
    Last edited by PianoBassGirl; 01-10-2021, 07:55 AM. Reason: I edited to add and delete some things that were't necessary as to shorten this post.

  • #2
    Is the doctor who called rapaflo a placebo a urologist? I just googled it and it was compared to flomax, which I'm familiar with and is definitely not a placebo. If you have a primary care doctor who is familiar with your health problems, I suggest you ask about ordering it for you.

    The only other suggestion I can think of is to keep a detailed diary for at least a few weeks to see if you can identify things that irritate and things you feel might help. The diary should include time of day, everything that goes in your mouth, urinary frequency, activities, even what you are wearing. That way you can refer back to the diary to maybe discover things that help and things that irritate.

    I wish I could be of more help.

    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

    Comment


    • #3
      Well I already explained that I have severe autonomic dysfunction in which my HR is very high and my blood pressure is very low. When you take an alpha blocker like flomax or rapaflo, it lowers your blood pressure.
      Last edited by PianoBassGirl; 01-10-2021, 11:18 PM. Reason: shortening post

      Comment


      • #4
        My apologies --- I'm not really familiar with your problems, other than IC, and I thought when you said the doctor said it was a placebo that he was not willing to prescribe it. My heart goes out to you --- I know you are having a difficult time and I hope you are able to find some relief. Are you able to try home remedies like baking soda and aloe vera? I wish I could help.

        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

        Comment

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