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Thread: Badly Bleeding Bladder

  1. #1

    Badly Bleeding Bladder

    I am a C7 reflex voider for 22+ years. Until last year I had never had a UTI. And I don't mean 'almost never', I mean none - zero.

    In the last 12 months I have had 4 UTIs. Each time my only symptons were AD and gross hematuria, which got bad enough to hosiptalize me twice.

    I had urodynamics 6 weeks ago and my results were: reflex voided at 450cc with max pressure of 20 and a residual of just under 200cc. My SCI uro said the pressure and residual were acceptable.

    I've seen 3 urologists, including a neuro uro. I have had every uro test there is. My kidneys are perfect and have never been involved, but based on cystoscopy my bladder was described as extremely vascular and inflammed (including one scope I had when I did not have a UTI).

    One uro said perhaps I should consider IC even though it is not clinically required. Another said minimizing catheters would minimize UTI as cathing isn't indicated based on my test results. The last one said that my bladder sensitivity to bleeding with infection may eventually require my bladder be removed (i.e I am destined to get UTIs, when I do I bleed badly and my bladder won't improve regardless of how I manage it.)

    I am confused and concerned.

    KLD what are your thoughts? Anybody been through this?

  2. #2
    My first thought is that if you have not had tests for bladder cancer, you should do this. This would involve at the least urine specimens X3 for cytology, and/or cystoscopy with multiple random biopsies. The latter can also determine if you have developed a condition called interstitial cystitis (IC). There is treatment for the latter although it is not an easy problem to manage.

    Removal of your bladder is a drastic step that should be avoided if possible. If you have to go down that route, your choices would include a continent diversion (Indiana pouch) with a neobladder (artificial bladder) made out of large bowel that you could use for self intermittent cath, or a incontinent diversion like an ileal conduit which would require wearing an appliance on your abdomen and draining constantly into a bag. Both are big surgeries so not to be undertaken lightly.


  3. #3
    Thanks for your thoughtful and speedy response.

    I have had the cancer tests (FISH test and biopsy) which were negative. Interstitial cystitis wasn't mentioned and I've been scoped 3x, but I will ask.

    One doc mentioned hyperbaric therapy could be worth a try, even though my bleeding is not caused by cancer (which it is the type of bleeding it is usually used for). I thought hyperbaric was new age B.S., but based on articles I found on, it has worked well for some with bleeding bladders.

    I agree with you on the bladder removal. Thanks for spelling out my options. You are a valued resource around here for sure.

    I just love having stuff the doctors have no answer for...sheesh!

  4. #4
    Hi Quadfather,
    My boyfriend, also a C6 quad, had a very similar story, and after many, many tests, it turned out to be bladder stones (usually small, but often very sharp and jagged), which were not realized until one was large enough to partially block his flow of urine. He had this stone removed through cystoscopy, and along with his efforts to improve his fluid intake ever since, seemed to resolve the problem. Also, did any of the urologists rule out an enlarged prostate (I don't know your age), since it can effect the amount of residual urine sitting in your bladder...which then can lead to bladder stones. The third thing, as SCI nurse mentioned, would be to have a bladder biopsy, since a "highly vascular bladder" can be seen along with bladder tumors. Check out the following website for suggestions re: bladder stones, but follow up with the other two, more serious possibilities. Good luck and let us know how it turns out!

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