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PostPosted: Tue Nov 01, 2016 10:37 pm 
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Joined: Mon Feb 14, 2011 9:57 am
Posts: 189
Location: UK
I wonder if others have experienced this. I've experienced some degree of retention for as long as I've experienced incontinence but it's been quite specific. If I stayed in my powerchair then I would quite often end up in retention and not experience any incontinence. If I transferred from my chair to the toilet using a transfer board or without standing then I, wouldn't usually leak at all. Whilst sitting on the toilet I would have to lean forwards and to the side in order to put pressure on my bladder to pee. However if I stood up to transfer then the flood gates would open. Didn't feel so much like urge incontinence as it did my sphincter had just opened followed by a release of pressure. Sometimes whilst lying down I would also just feel the internal sphincter open and it all start pouring out. Other times I would end up with my bladder spasming but my sphincters clamping shut painfully so that the pressure was really painful until at some point the sphincter might give in. This could be a violent enough spasm to almost fold me in half from a lying position.

Fast forward to a few years ago and I become entirely bedbound and only able to lie flat. At first I was incontinent since it started with a nasty nfection which usually made my bladder open as a reflex. However a few months in and it just stopped. No incontinence but also even if i was desperate I couldn't pee lying down - whether in a pad or a bedpan. The only time I could pee is if someone moved my legs for me so that my feet were flat on the bed with my knees up and bent, then things relaxed enough to let me pee. Didn't matter if my bladder was seriously fully nothing would come out otherwise...so I ended up with a foley. Interestingly I still had some issues when I got the foley where it just wouldn't empty sometimes. A district nurse helped me work out that the problem was likely that my bladder neck (internal sphincter?) was spasming shut around the eyelets of the catheter stopping it from draining. I was given more baclofen to help and now it is only an issue occasionally.

For context I am a transgender make i.e I was born female and have not had any genital or urological surgery (though I was about too when I became bedbound. Just as well I didn't as it would have meant having to go to hospital to see a urologist for any catheter insertion and changes since the neo urethra is so small. This would have been dangerous for me).

So anyone else experienced this? I wonder if it could be Bladder sphincter Dyssynergia but the postural aspect seems quite odd. Could something about the positioning affect the function of the bladder?


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PostPosted: Wed Nov 02, 2016 9:40 am 
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Joined: Wed Aug 19, 2015 11:49 am
Posts: 890
Location: Jacksonville Fl
I have the same bladder, and also detrusor sphincter, dyssenergia. I fully understand the spasms and pain, and for years had to bear down and strain really hard just to pee a little for those darn pains to stop.

After a number of sphincterotomies to my external sphincter that part is now open. My internal sphincter though still has a mind of its own. Sometimes it will open and I'll pee without even thinking about it (yea no pain or spasms). Other times I will get a bladder spasm and it stays clamped down forcing me to stain to pee again.

I too have also noticed that sitting down and lying down in certain positions will also nearly guarantee my bladder will fill up. I believe this is simply because the urethra is being compressed enough to effectively clamp it shut. The bladder fills up regardless of the sphincters, and there you go.

Leaning to the side, rolling forward, getting up, etc all relieve that pressure on the urethra and you pee. Gaining weight will also add more fat in that area and increase the chance of the urethra clamping off too.

I also know that when you stand up the blood pressure in you body will naturally redistribute with gravity. Circulation in the legs picks up, which then dumps more urea on to the kidneys. This in turn fills the bladder just a little faster, and makes you need to pee. This process takes a moment though. I've noticed the need to pee when standing doesn't happen right away, but a few seconds to a minute after.

At least those are my educated guesses and theories any ways.


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PostPosted: Sun Nov 27, 2016 5:35 am 
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Joined: Thu Jun 27, 2013 5:29 am
Posts: 34
I get both incontinence and retention depending on my position as well. I cannot or find it very difficult to completely void urine while sitting, some of the time. However after a while some will push out.

My problems, I am finding out, are likely neurogenic. I thought it was BPH or a constriction, but I am finding out I have a lot of nerve issues. Sitting down can put pressure on some of the nerves that control our bladder. Could this be what is causing your problem?


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