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HELP!!!! Bladder causing compromised Mental disabilties

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Hi all

The urologist took out the indwelling catheter last Monday, and my bladder has returned to pre-Botox but is a little harder to fully empty.

I am up numerous times, as well as around 3-4 a.m., and cannot get back to sleep (even though I am on increased meds to help sleep).

I still have fluid in my feet from the Botox, and the Urologist is not willing to induce leakage (even with an indwelling catheter) even though I have advised him it would compromise my Autism, ADHD, and, worst of all, BIPOLAR due to bladder issues at night especially.

I am also finding it hard to access my bathroom due to fluid and pain in my right foot ( I am on fluid tablets. My Urologist suggested I ask my GP, which I did the day after).

I even asked for a stent to induce Incontinence due to mobility issues as well as Mental health due to sleep, but he is refusing to do anything for at least a month after the Indwelling Cathetor has been taken out as he has told me it would be medication based as he is refusing any other things.

Is there any Medical scripture regarding urologists using stents in this manner?

He has ruled out future Botox (due to complete failure and side affects as I am in that 3% or lower where it has failed)or other procedures.

I see my GP with my Mental Health nurse in the room on Tuesday.

What do I do as I am concerned regarding my Physical (mobility) and mental health which he seemed to disregard.

Many thanks

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Unfortunately, I've been there. Including the failed botox, having to wait for the sake of waiting, and every possible med (which NEVER worked but often came with bad side effects). Catheters worked great to alleviate my pain, but they were also uncomfortable at best, and come with their own set of problems. Uuuuugh.

The only solution I found was to fire that urologist. If they aren't willing to listen to you, or worse are failing to do good like they swore, then it's time to move on to someone else. Go to your GP and ask for a new referral. I know, it sucks because it will take 1-3 months just to get a new urologist up to speed. But it really IS faster and easier to start all over.

Though when you do talk to a new urologist be sure to underpin everything you've been through.  It should also help to put together a short, 1 page max, chronicle or journal for them. Include one line each for rough dates? what you've tried, and the good-bad effects it produced. I also found it really helps when you stress your current quality of life (or lack), and everything that has helped up to this point (even the small stuff like timed peeing or dehydration before bed).

You didn't say this, but are you managing your issues with diapers? And are you already wearing them 24/7? I found this is REALLY important to urologists if you're already thinking that total functional urinary incontinence as the best solution. If you are, then also make sure to stress a sphincterotomy will NOT make you incontinent or dependent on diapers- you already are. But, the surgery WILL improve your quality of life.

Oh, and I was told stents have seriously fallen out of favor. Apparently long term studies showed a very high likelihood any stent will cause strictures. Of which, just block you off again. So in 10-15 years it will require being removed, AND you'll have to deal with a complete blockage. The alternative is sphincterotomy surgeries. They are a pain, AND I guarantee 1 surgery will NOT be enough to make you incontinent. 3 maybe, 6 if they have to do both your internal and external sphincters.

I asked for a sphincter-ectomy (where they go in through your perineum and cut the muscle out in its entirity), but was denied that and had to go with the sphincterotomy (where they make a radial cut on the inside of the urethral sphincter) (NOT a lateral incision, those aren't "aggressive" enough and don't work). Ultimately though, my 6 surgeries caused a really bad stricture, which ended up being 15 surgeries, including a turp, full prostrate-ectomy, and removing another half-inch of my urethra. Yeah, no joke there. Like seriously? 1 sphincter-ectomy the first time would have been soooo much more efeective, favorable and better. But al least now I'm stable.

Hope this helps you. Reply here if you need more.

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