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PostPosted: Fri Jun 03, 2016 1:29 pm 
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Joined: Wed Aug 19, 2015 11:49 am
Posts: 890
Location: Jacksonville Fl
So as some here may know I have had urge incontinence over the last 20 years. This has been complicated by a slowly worsening neurogenic blockage caused by my sphincters clamping shut when I get a bladder spasm/contraction.

Most urologists I've been to over the years didn't even think something was wrong with me, and others had no idea what was going on (commonly calling it oab). Well a couple of years ago I found my now current urologist at the mayo clinic. He was eventually able to give the possible diagnosis of "incompetent bladder". Basically meaning my bladder isn't working in conjunction with my sphincter.

This was the closest anyone had come and sounded about right. The treatment called for an external sphincterotomy (actually have had 5 surgeries now). However, I have still been having problems with sometimes retaining (where I have to strain to overcome the retention), but other times when my bladder will just drain and I get no problems.

The last time I went in for the surgery my urologist said I was completely open at my internal sphincter, aside from one stricture near my prostrate which he had removed. This sounds right, but only cor half of the time. I was feeling a bit frustrated since he didn't try removing my internal sphincter, and sure enough I'm back to having to sometimes strain again.

Well, attempting to research this some more today I stumbled across the website below. They mention something called "detrusor sphincter dysenergy" Holy crap, this DSD fits my symptoms -exactly-!!! They mention common symptoms are urge incontinence, and retention, and a worsening blockage! I even found one other site that mentioned DSD can be very difficult to detect and diagnose, and sometimes can be mistaken for, wait for it, incompetent bladder. Both sites say an internal sphincterotomy or urethral diversion needs to be done in order to treat it. Now all I have to do is see if my urologist agrees. Unfortunately my next appointment with him isn't for another two months.


http://onlinelibrary.wiley.com/doi/10.1 ... 042.x/full


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PostPosted: Fri Jun 03, 2016 3:41 pm 
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Joined: Sat Sep 05, 2015 7:51 pm
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Location: Hampton Roads, Virginia
Good luck with that! :)

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PostPosted: Sat Jun 04, 2016 10:14 am 
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Joined: Mon Mar 05, 2012 11:15 am
Posts: 292
Location: Mississauga, Ontario
Brian,

You poor devil! You have my sincere sympathy. Are you now thinking about some form of diversion, such as a suprapubic catheter?


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PostPosted: Sun Jun 05, 2016 8:02 pm 
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Joined: Mon Jan 27, 2014 1:29 pm
Posts: 850
Brian, can you e-mail your doctor to tell him what you've discovered and possibly get your appointment moved up?

Wetters


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PostPosted: Mon Jun 06, 2016 9:41 am 
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Joined: Wed Aug 19, 2015 11:49 am
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Location: Jacksonville Fl
I've dealt with catheters WAY too much already. I've already looked at diversions, which would be acceptable- except those diversions both need catheters, and are done above the belt line (usually at the belly button). Plus, in order to prevent my urges I would also have to have a catheter in place 24/7 as well which would also mean needing a collection bag 24/7. Not exactly a good option, especially when diapers are so much more easier, convenient, comfortable, less likely to cause infections, and are more able to be hidden from public view.

What I was able to read up on this is that removing the internal (detrusor) sphincter is how to treat it- which is what I was supposed to have had done last time. As for moving up my appt, that wouldn't do anything for me any ways. Not many doctors will do a repeat surgery in the same area, and within three months. I still have more healing to do first, only then will I be able to move forward with my urologist. So, I wait (as I heal).


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PostPosted: Sat Jul 30, 2016 11:44 am 
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Joined: Thu Aug 20, 2015 9:20 pm
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Yay Brian. So glad for you. :)
Didn't your sphincterotomy already remove the inner sphincter?


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PostPosted: Sun Jul 31, 2016 10:00 am 
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Joined: Wed Aug 19, 2015 11:49 am
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Location: Jacksonville Fl
kdlstar wrote:
Yay Brian. So glad for you. :)
Didn't your sphincterotomy already remove the inner sphincter?


No, not fully. It took three sphincterotomies to remove enough of my outer sphincter. I've had one sphincterotomy on my inner sphincter, but it was not enough to actually remove it. (I've also had two other sphincterotomies, but those were to remove strictures using the same general procedure). I will likely need one or two more to remove enough of my inner to actually open me up.


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PostPosted: Sun Jul 31, 2016 3:29 pm 
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Joined: Sat Mar 29, 2014 11:45 am
Posts: 1836
Detrusor/sphincter dyssynergia was/is my diagnosis. Somewhere in my record is a video x-ray of my bladder going into a hissy fit while my external urinary sphincter was clamping shut. Hence the sphincterotomy. I hope your doctors see the light and treat you accordingly.


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PostPosted: Sun Jul 31, 2016 6:08 pm 
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Joined: Wed Aug 19, 2015 11:49 am
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Location: Jacksonville Fl
They have, well mostly. Like I've mentioned, I'm at SIX sphincterotomies, and counting.


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PostPosted: Mon Aug 01, 2016 12:32 am 
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Joined: Thu Aug 20, 2015 9:20 pm
Posts: 155
That is astounding- 6 sphincterotomies >.< WOW
Brian that seems very expensive and stuff.... and extremely painful....
do they like at least knock you out?


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