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New User - 46yo Male

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  • New User - 46yo Male

    Hey all,

    Am a 46yo male with IC - probably for at least 10 years but cannot recall a specific incident....

    Am in Brisbane, Australia - have seen a number of urologists - some have referred to others, and the most recent one have been seeing for 3 yrs, and we have worked our way down the tree to bladder removal - an ileal conduit...... but am hesitant..

    History - have tried all medication under the sun, including Vesicare, Elmirol, Flomaxtra, pain relief including Betmiga, Tramadol etc.

    Have had 9 cystoscopies, one of the first was a hydrodistention that ended up rupturing my bladder causing massive issues. Due to this I have psychological issues and CANNOT self-catheterize.

    Have had a BNI (bladder neck incision) for flow improvement and also Botox. Also have a TENS machine I use on my spine for pain management (hit and miss).

    Am going to the toilet around 30+ times a 24hr period. Sometimes 15 min apart or more..... am waking close to every hour for toilet also.

    It runs my whole life - every thing I do I need to compensate for this and am lucky to have an understanding wife and 3 kids.

    My main wish is to be able to sit through a movie with my kids, go to a event without needing a toilet all the time, play frisbee in the park with the kids... go for a drive without pulling over to pee!!!

    Am keen to hear what people do to enable long car drives / movies / work meetings etc. I haven't tried nappies yet, but have them here.... also for males, any advice on long trips? Not sure if condoms with a bag are an option?

    Any help welcome!!



  • #2
    Hi and welcome! Sorry to hear about how the disease has taken over your life.

    I had neobladder surgery in December 2018 and I got my life back after years and years of pain and problems. As you describe, the need to empty the bladder at all times was a major problem for me, and the pain and cramps connected to this were intolerable. You can read my story here: (I had to change username after a forum upgrade). You can also find more info about my surgery in the bladder removal forum.

    I don’t frequent these forums any more but they were a huge support for me when I was ill.

    Condoms with bags were useless for me because eventually I could not urinate at all due to horrible pain. So I had to self-cath 25+ times per day.

    I hope you find relief.
    Male (born 1970) living in Oslo, Norway. Diagnosed (cysto) with BPS/IC with Hunner's lesions on 23 Nov 2015 after many years of pain.
    Symptoms: severe bladder pain, bladder cramps, urethral burning, painful urination, rectal spasms, acute retention (requiring self catheterization).
    Treatment: Successful neobladder surgery on Dec 7, 2018.

    Read My story here at @ICN