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Thread: Bladder Issues

  1. #1

    Bladder Issues

    I am a 27 yr old male t11 complete injured for about 7 mnths now. Since I became coherent I have had a strong sensation to pee 24/7 due to high pressure in my bladder. My sensation has progressed from my belly button to the middle of my hips and I have sensation as close to top of my penis as possible. It is not normal sensation and it is a little uncomfortable like nerve pain maybe. I got botox done about 5 weeks ago and sadly no results. I am having another bladder study next month and they may have to repeat it.

    I am constantly being told I can have a good life etc even marry etc and I just can not see how right now. I was a former college athlete and knowing that I sleep to what get up and sit down drives me crazy. I isolate myself especially from girls bc the worry of bladder leakage and never knowing what may happen with an occasional accident.

    I was also someone who drank water non stop and know I have to force myself to drink daily bc it is hard to drink things when you always fill the need to cath. Its funny I am scared to drink and I take medicines like lyrica and ditropen that dry my mouth out like crazy. I also use a close sytem cath and still have had several UTI's I have yet to sleep for more then 5 straight hrs at nite bc have to cath and wake up 4 hrs later and its fifty fifty I would wet my bed. I used to sleep in just some shorts with no underwear and now I am sleeping and wearing an adult diaper, will I ever get a anything close back to normal or get a serious handle on the things I mentioned above. Thanks for your help. I pray everyday for anyone suffering through this awful awful thing SCI

  2. #2
    hey man im going threw the same thing as you..but b my uro told me to take a straight cather and hook it to a bed bag and tape the cathter to ur dick then when u wake up take it out so thats what i been doing and atleast i get some sleep but during the day im lucky if i go 4 hours without cathing im only holding like 150cc of piss but i suppose to try botox.. but sorry im no help man

  3. #3
    thanks deel I have met people that wear bags during the night or 24/7 I guess I just have issues with doing that because I am very stubborn with a lot of things and I think that is weird and sad and my attempt to not accept this miserable life I have been refusing to do things that make me feel like I accept it.

  4. #4
    First of all, you cannot feel pressure in your bladder. There are no sensors for this. Those who have sensation that is accurate are feeling stretch with filling (like ABs) not pressure. The only way you can determine your bladder pressures is to have urodynamics. What were your maximum bladder pressures (PdetMax) when you had this test done? High pressures can cause your frequent UTIs regardless of what method you use for catheterization, as can high volumes and not cathing frequently enough.

    Some people at your level of injury do have a type of neuropathic pain called visceral pain. This can be perceived as urinary urgency, but generally is not necessarily associated with a full bladder.

    What meds did you try other than Ditropan for your bladder? In what doses? Did you try intravesicular Ditropan instillations?

    Is your urologist an expert in SCI urology? We rarely attempt Botox during the first 12 months after injury as your bladder changes a lot during that time. Have you discussed a clam-shell augmentation as the next step?

    If you are leaking, why are you not using an external condom catheter rather than diapers?

    Are you also having issues with ED? Are you having reflex erections or psychogenic erections or neither? What have you tried to help with your ED (oral meds, vacuum devices, penile injection therapy)?? Did you receive any education about sexuality issues when you were in rehab (or since then)?

    (KLD)

  5. #5
    i disagree. when my bladder is acting up (uti, blocked tube, whatever), i feel intense pressure and need to pee. i even dream about looking for toilet if it happens while sleeping.

    maybe ppl don't want to call it pressure, but i would call it that. it feels like your bladder is full and somebody is pressing on it.

    so, don't medically call it pressure. i'm here to tell you that's exactly what it feels like. it's pretty miserable.

  6. #6
    My urologist is actually known as one of the better ones in the southeast and I have met several people who got botox from him and love it. I do not know how close to injury they were when they had it. They did acknowledge things can change 12-18 mnths out with bladder....but what doesnt with SCI. I am on 30 mg of Ditropen and other then tempoprarily trying one med, I can not recall the name, but it was supposed to supress a hormone that generate urine at night, that is it.

    As for the diapers I am a little stubborn so I am always kind of refusing things that make me feel like I have accepted this as my life, especially this early I can not. I wont consider adaptive sports if I am in my chair sitting I put my feet on the ground not the foot rest. I can not see myself wearing a bag of pee. Also I am starting Project Walk like Rehab and also will be in Beyond Therapy at Shepherd Hospital in Atlanta so I also wonder how you could you could be active in this things with a bag of pee on your leg.

    As far as the ED yea I have not had an erection sense my accident. I have not tried any pills or anything and have been hesitant to try because I have felt it would be pretty difficult to get aroused when you feel the urge to pee pretty badly 24/7.

    I do not know what my urodynamics were specifically in terms of numbers. I know that my bladder could hold plenty and that the pressure I think got to high around 150cc's I know we are doing another one in a few weeks that will check them again and one possibility which the study will find out is if the sphincter muscle is too relaxed which they said would maybe lead to collagen injections. I have not really thought about doing anything other then botox because this is not permanent and being several mnths shy of a year makes me want temporary. Thanks in advance for your responses

  7. #7
    Senior Member zillazangel's Avatar
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    NCSU - are you a wolf packer? We're local, in Raleigh-Durham. We have lots of good resources for you, including a great urologist. PM me if you are here in NC and we'll connect up.
    Wife of Chad (C4/5 since 1988), mom of a great teenager

  8. #8
    Does anyone know about the urine pain the nurse mentions above?

  9. #9
    i believe kld is speaking of the the normal Able body (ab) urge to pee when they get enough urine in their bladder to signal the brain," you got to pee"
    when i was first injured, i had no sensarion of having to pee, as time went on i started to that signal back, i still couldn't pee, but at least i knew to cath and was ensuring i was cathing before the bladder got too stretched out , which would inhibit my chance for recovery. 600cc was way too much, i think he wanted me no higher than 400cc
    the bladder is like a balloon and elastic, you keep over inflating it, it will not regain the r elasticity which also helps with voiding/peeing, when you can control the bladder sphincter muscles, think thee are two sphincters
    cauda equina

  10. #10
    Thats good to know about cathing to infrequetly with high volumes works against normal voiding occuring. Sweet Life!

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