Neurogenic bladder.

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mayhem

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  1. Diaper Lover
  2. Incontinent
I wonder how many here have been diagnosed with this and the doctors have been unable to find out what the cause is. My doctors cannot figure out where the problem is with me. I had botox done and ended up having to use a catheter to empty because my bladder would fill up to 1,400ml and then release. That meant HUGE floods and a very uncomfortable time before the release.
After about 9 months the botox has worn off but the bladder spasms started back up. I've taken out my catheter since it seems to have been making the opening at the tip of my penis larger. Yesterday was terrible for me with a lot of pain in my bladder and fully aware that I need the bathroom NOW (less than 10 seconds before I lose control), and today I have no pain but have been wetting without knowing.
Anyone else in the same boat? I'm contemplating on going back and giving the Botox another shot, but I'm very afraid of the same problem again. I cannot have another several months of a catheter because I'm afraid of it ending up making the opening at the tip of my penis overly large. However, not having the spasms was nice while it lasted.
 
WOW! 1400ml? And 9 months for it to wear off? I had half that (in both cases), and I though that was bad. Sorry to hear that.

But yeah, botox is WAAAAYYYYYY oversold.
 
I’ve got non neurogenic neurogenic bladder. Not sure what the difference is but I constantly leak with time to time full release. Certain times I’ll feel very uncomfortable and have a full bladder won’t Be able to completely empty without cathing. I’ll be able to urinate in small doses buts that about it. Then when I cath my bladder spasism And causes a big mess.
 
So basically you have no feeling till crisis point then. 1400ml or 1.4 lts wow that's huge, I've got a neurogenic bladder that has a capacity of around 800ml to 1 ltr but I get no feeling so between those numbers it begins to leak out, I like you have no diagnosis the only thing my doctor's managed to tell me is that my bladder has stretched and become desensitized to the pressure of filling I can only attribute this to the fact that I used to be able to hold for a good 8hrs +, I have the same issue with the catheter sometimes I've managed to crack it again now and stop making a mess, sometimes I find my bladder is so full I only have to get the catheter in half way and all hell breaks loose and a torrent of urine rushes out which is fine if your in the shower.
 
I have also been diagnosed with Neurogenic Bladder, though I get the impression they are calling it that due to not really knowing what is going on and what's causing it. I've been told at various times that I have a "lazy bladder" as well as OAB, also. Testing revealed that I was retaining 400-500 cc. after urinating, prior to surgery. Now, it appears that it empties completely, at least part of the time. Of course, some of those times it spasms and empties in a "torrent of urine" like Pongoandperdi describes. On my most recent visit to the urologist, they again brought up the possibility of trying Botox or Interstim at some point, but neither of those sounds appealing to me right now. Maybe in the future...
 
RedStripeLvr said:
I have also been diagnosed with Neurogenic Bladder, though I get the impression they are calling it that due to not really knowing what is going on and what's causing it. I've been told at various times that I have a "lazy bladder" as well as OAB, also. Testing revealed that I was retaining 400-500 cc. after urinating, prior to surgery. Now, it appears that it empties completely, at least part of the time. Of course, some of those times it spasms and empties in a "torrent of urine" like Pongoandperdi describes. On my most recent visit to the urologist, they again brought up the possibility of trying Botox or Interstim at some point, but neither of those sounds appealing to me right now. Maybe in the future...

Yeah don't. Botox is temporary at best, so it needs repeat procedures every three months. And it's effectiveness wears off with each procedure. At worst, it completely deadens your sphincter and makes it near impossible to pee. You will most likely be cathed the entire time till it wears off.

And interstim is nothing more than oversold spin. I'm sure you got the 80% effective pitch. Well that's for only for half of the people who get it done. Overall, interstim is only 40% effective (half of 80).

I had it done, and it was a constant three weeks of never off electro-shock torture. It ended up frying my sacral nerve, and made things way worse for me. Plus, it was one surgery to put it in, and another surgery four weeks later to take it out.
 
Slomo said:
Yeah don't. Botox is temporary at best, so it needs repeat procedures every three months. And it's effectiveness wears off with each procedure. At worst, it completely deadens your sphincter and makes it near impossible to pee. You will most likely be cathed the entire time till it wears off.

And interstim is nothing more than oversold spin. I'm sure you got the 80% effective pitch. Well that's for only for half of the people who get it done. Overall, interstim is only 40% effective (half of 80).

I had it done, and it was a constant three weeks of never off electro-shock torture. It ended up frying my sacral nerve, and made things way worse for me. Plus, it was one surgery to put it in, and another surgery four weeks later to take it out.

Thanks for the info, Slomo! One of the main reasons I joined this site was to hear from others about their experiences with various treatment options so I can make an informed decision about them. Though there are times I wish I didn't have to wear a diaper, overall I'm pretty content and happy with my current situation, so I don't want to upset the apple cart. The only surgery I've had so far has been the TUIP procedure, and that was after quite a lot of research and discussion with my urologist and my wife. Thanks again!
 
You mean TURP right? I've had that too, just recently in fact (at age 41). Though the purpose of mine was to try and remove a stricture blockage. It partially worked, but now they have to go after the rest of my stricture that just below the prostate.

Has the option of a sphincterotomy been brought up to you yet?
 
I have a neurogenic bladder. I do not have any feeling before release. I am the same with my bowel. That is why I have accepted diapers permanently
 
Slomo said:
You mean TURP right? I've had that too, just recently in fact (at age 41). Though the purpose of mine was to try and remove a stricture blockage. It partially worked, but now they have to go after the rest of my stricture that just below the prostate.

Has the option of a sphincterotomy been brought up to you yet?

No, it was the TUIP...Incision vs. Resection. It's a little more benign than the procedure you had. We have not discussed the sphincterotomy at this point. So far, it appears that the surgery is helping my bladder to empty more fully, which is good, but it has had a negative effect on my control. I have very little control now, and if I do try to hold it more than a few seconds, I begin to cramp or spasm. At least with it emptying out, it reduces the chances for UTI or kidney infections.
 
Mine was diagnosed as neuropathy. Sometimes I wet with no feeling and other times I have about a minute or less from the first feeling of needing to go before I wet my self. At night I just pee in my sleep with no recollection of needing to pee or when I actually do.
 
(late to this cos I've been away from the forum for a while)

I was diagnosed with neurogenic bladder about 6 years ago and they have never found the cause. I've been tested for MS, diabetes etc, all negative. The top theory is that it was caused by a spinal injury I had several years before, in which I fractured a sacral vertebra and was temporarily paralysed due to bruising of the spinal cord. And that then something else happened (they don't know what that thing is) which combined with the previous injury to cause the neurogenic bladder. I guess it's Cauda Equina syndrome, or something similar. But they don't know for sure. My urologist said that in as many as 30% of similar cases, the cause is never found.

My capacity is nowhere near 1400ml though. I get up to around 750ml then it starts constantly dribbling a bit at a time, so in the beginning I was having to wear diapers 24/7 AND I was getting constant UTIs and kidney infections from having a pint and a half of old stale urine permanently sitting in there. I have no sensation of "fullness" in my bladder and I never get an "urge" sensation; I just never know when I'm voiding except that I can feel it on my skin in the diaper. I never feel pain in there either, which is a plus, and I never get spasms (or if I do, I can't feel them).

I manage with intermittent catheters which I do about every 4 hours, and diapers to handle the inbetween leakage, which somehow still happens at random times even when my bladder is almost empty.

Oddly, I never void whilst asleep, or even while lying down in bed, but I almost inevitably do so, in copious amounts, the moment I get out of bed and stand up. My diaper will be bone-dry when I wake up, and by the time I reach the bathroom it will be full-to-overflowing.
 
downtide said:
(late to this cos I've been away from the forum for a while)

I was diagnosed with neurogenic bladder about 6 years ago and they have never found the cause. I've been tested for MS, diabetes etc, all negative. The top theory is that it was caused by a spinal injury I had several years before, in which I fractured a sacral vertebra and was temporarily paralysed due to bruising of the spinal cord. And that then something else happened (they don't know what that thing is) which combined with the previous injury to cause the neurogenic bladder. I guess it's Cauda Equina syndrome, or something similar. But they don't know for sure. My urologist said that in as many as 30% of similar cases, the cause is never found.

My capacity is nowhere near 1400ml though. I get up to around 750ml then it starts constantly dribbling a bit at a time, so in the beginning I was having to wear diapers 24/7 AND I was getting constant UTIs and kidney infections from having a pint and a half of old stale urine permanently sitting in there. I have no sensation of "fullness" in my bladder and I never get an "urge" sensation; I just never know when I'm voiding except that I can feel it on my skin in the diaper. I never feel pain in there either, which is a plus, and I never get spasms (or if I do, I can't feel them).

I manage with intermittent catheters which I do about every 4 hours, and diapers to handle the inbetween leakage, which somehow still happens at random times even when my bladder is almost empty.

Oddly, I never void whilst asleep, or even while lying down in bed, but I almost inevitably do so, in copious amounts, the moment I get out of bed and stand up. My diaper will be bone-dry when I wake up, and by the time I reach the bathroom it will be full-to-overflowing.

Before I had fullblown day time incontinence, I would wet almost every night. My kidneys don’t slow down production at all during sleep.
 
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