Hey guys. I've mostly avoided posting since I'm born with CP and you guys get a little ticked off about non-SCI stuff (unfortunately I don't know where else to ask). Anyway I was running and walking and about 4 years ago, stuff started going downhill, throw in a couple injuries that weren't severe enough to explain it - now using a wheelchair 90% of the time and I'm just a case of no one knows exactly what to do with me - I'm getting the run around from doctors (one thinks it's just CP and age, another disagrees that it's too severe, another has no clue, you get the point). But hey I'll give this a try.

I've had an overactive bladder for the past few years, throw in a few times a day I either have to strain real hard to pee on my own or I cath. If I drink water normally, I have to pee every 30-45 mins, urgency too. Considering I commute by public transit to work 1.5 hr each way (with no bathrooms half of the way), I've managed to function by...just not drinking water. I try to catch up by drinking more water at home, as much as I can, but I've been feeling like crap for the better part of the last year. I tried a bunch of anti-cholinergics including vesicare, and the newer Toviaz and Mybetriq (as soon as they came out). I didn't notice much of a change and the side effects we're unbearable (including the dryness triggering my susceptibility to styes in my eyelids, I spent 3 months going about looking like I got punched in the face and I finally paid out of pocket to get the pus drained and cut out :s - it was considered cosmetic and not covered ugh)

The kicker? I wake up almost every morning in full blown retention, every time I lay down, especially at night, I don't feel anything (or any urgency to go) until it feels back up to my kidneys and it hurts to breathe (and I'm on no medication at the moment, it's not like I'm knocked out). This happens mostly in the mornings but I also get a week or two a year when it happens all day and not just mornings where I'm on the floor for an hour in pain from spasms, I can't pee and I can't get a cath in either, everything just hurts no matter what I do. I've been to the ER, they stuck me with a foley and sent me to see my urologist two weeks later. That last time, they screwed up the ballon and I had chunks of tissues coming through and spasms, went back to the ER, told me it couldn't be that bad and didn't do much - out of 4 visits in one week to the ER, once they gave me painkillers after they figured out the balloon was lodged funny and underinflated and didn't send me home with nothing). So since I gave up on ER and I've just handled it on my own. I still don't understand how I can have to pee all day but when I lay down, I feel nothing :s

And now add to that that I have HUGE troubles cathing these days, I use 10Fr and sometimes I can't even get it in, the sphincter feels clamped down. Sometimes I manage to get the cath in, but it ain't coming out, it's clamped down with spasms. I tried everything, diff caths including coude, small, bigger, PVC, silicone etc, extra lube, positions, (uninflated) foleys seem to be more flexible and better and xylocaine seems to help a bit etc and I just end up having to pull it out slowly. I can feel the cath ''ripping out'' on the way out, sometimes with blood, sometimes not. So now I try and avoid and just strain like crazy...sometimes it works, sometimes not. I now have a small prolapse from straining so much.

For the past few months, this constantly being dehydrated is getting to me. I can't tolerate foleys at all, IC I try to avoid at all costs. I feel like crap constantly. I try to drink as much water as I can at home but I just can't keep up. So I saw my urologist a couple months ago for the first time in over a year, I was fed up. My last (first) urodynamics 2 years ago didn't turn up much but a small bladder capacity so he sent me for videourodynamics (today) - which turned up apparently normal after 400 mL in and stopped. I wanted to cry...they asked me if I'd been scoped too (since cathing is such an issue), nope not yet. I'm at a loss. Should I videotape my every morning routine to prove the point?

I'm almost willing to ask for a Supra-pubic, I can't function drinking water like normal people (= peeing every 30-45 mins - nevermind finding a bathroom!) but I also can't tolerate caths of any sort lately. This is no quality of life, I'm dehydrated and feel like crap all the time, and my life revolves around bathrooms/can't go there since there's no bathrooms/am I gonna make it/pee myself/be able to cath (depending on the issue...). Is it reasonable to ask for that? A feasible option? Part of the urodynamics to see if I was a candidate for bladder botox (apparently just approved here - of course it turned up normal so no go). I don't know what else to do...

Sorry for the rant and thanks guys!