Came over from ADISC, finally.

[Pino]

I was active on ADISC as an incontinent member, not related to AB or DL, but with respect for the community. I received a lot of good information there and was thankful for that. 

During the last weeks i read a lot on DD, but could not find myself to fit in. So, i like to give this forum a try.

 

I am from Germany, 49 years of age, and incontinent for about five years now. The reason is not completely clear, it is diagnosed as Neurogenic Bladder > Neurogenic Detrusor Overactivity > Terminal Detrusor Overactivity combined with Detrusor-Sphincter-Dysfunction. This results in loosing about half my bladder volume when reaching the maximum capactiy.

In the last month this changed a lot, maybe it is my new medication, my bladder is now more like in a "Reflex-Bladder" working mode at times. 

The reason maybe my Polyneuropathy and Dysautonomia.

 

Perhaps i find here some people from ADISC who still know me. 

Best wishes

 

Pino

[Incont]

Welcome Pino!

[Slomo]

Welcome. Sorry to hear you're having a hard time nailing down that diagnosis. Trust me, I was there for about 15 years. And if you don't nail down the problem, your symptoms will never improve and can even get worse.

As someone who had Detruso Sphincter Dysynergia, your symptoms don't sound like that's it. DSD is when one or both of your sphincters go haywire and act differently than how you conciously want them to (or automatically should).

In my case, every time my sphincters tried to relax, they'd clamp down instead. Coupled with severe urge incontinence I struggled with years of straining to pee. Made worse by quack urologists who couldn't diagnose their way out of a wet paper bag. I'm stable now because I became my own expert on it.

May I ask, what does it feel like your bladder is doing when you get the first sign its filling up? Any abdominal pain? And does your internal or external sphincter feel like the muscle is spasoming any? 

Then again what does it feel like your bladder is doing when you get the full feeling? Both your sphincters too?

Then again as you bladder is emptying?

Just my sugestion, but once you answer those 3 sets of question, revisit it withcyour urologist. Then push for more testing if you can get it. That urodynamic test is uncomfortable as heck, but it can reveal a lot of clarity.

And swith out your medication. Different drugs, even in the same class, can have wildly different side effects. And if that fails, seek out a different urologist to get another opinion.

[Pino]

Dear Slomo,

my situation now is completely different from when i got the diagnosis, the reason is not clear to me. When the UDM was done, i had DSD, including a lot of pain and my bladder working hard against my pelvic floor. The reason for this is suspected in the OAB itself, i tried for about two to three years to keep control, resulting in a complete cramped PV. At some point the cramped PV was so stressed out, it was not able to work any more, thats when i first lost control about my bladder either.

Since than i did PV exercises to relax the PV, did TENS control therapy (Bio-Feedback), got Botox into my bladder, several times, lots of Anticholinegica / medications, changed my diet, used intermittent catheterisation, changed my behavior about my bladder problems, trying to accept i am incontinent with mid 40ties, which is not that easy. A big factor was using diapers. After trying to get around them hard for three or four years, i accepted using them would just help me. It reduced stress levels enormously, and after finding products that worked, it relaxed my pelvic floor as well. One reason i was on ADISC, other incotinence forums are not that fond of discussing diapers.

I need to say there is DSD as Dyscoordination and Dysynergia, often used as the same, but the reason is different, i had Dyscoordination. That problem is solved for me as long as i keep myself away from clenching to hard to avoid micturation. The reason for the OAB is neurological.

DS-Dyscoordination can happen as a result of long term Urge-Incontinence.

 

Some years ago i would feel 50ml in my bladder with increasing pain up to 250ml, at this point my bladder would cramp hard - proven with UDM resulting in the loss of half my bladder volume or more.

That changed over the years, now i do not feel my bladder until it is to late, around 350ml now, i will get an hard urge out of nowhere, OR i will feel nothing at all but my bladder will let loose without asking, somtimes with an slight feeling in my bladder, but no urge at all. Most times this happens when changing position from standing to sitting or when i lie down. I am sure this is related to my POTS somehow and to my new medication for it, as Clonidin has the side effect of calming down the bladder (and pelvic floor).

I will try to adapt to this new situation, as the Botox does not work any longer for whatsoever reason.

Edited December 17, 2025 by Pino

[Slomo]

That sounds like some pretty serious urge incontinence. I still have that as well. And even though my sphincters were removed, I sometimes still get a bladder urge. With nothing in my bladder too. It's nowhere near as bad as it used to be, but enough to still give me pause for a minute.

In fact, removing both urinary sphincters was exactly what I needed. No regrets having it done, especially given that diapers work better to absorb a near const dribble much better than they can floods.

[Pino]

Hi Slomo, getting removed the sphincters is hardly done in Germany without adding something new, like a pouch. 

Some time ago, when some doctor would have offered this to me, i would have geeting it done just to get rid of the pain. I am really happy this was not neccessary in the end and i got rid of most of the pain completely. For the moment i am O.K. with it as it is. 

I will not do another BTX treatment, as the result was much to low last time and since my bladder does its own thing now often enough, i would need to disable it completely and do ISC and as my body seems no longer to "accept" botox, i think that will just not work out.

Wearing diapers is O.K. for me, even when most doctors still seem to be not accepting this as a long time solution.
But i will not accept an abdominal catheter or a pouch on my side as solution either.

Edited December 20, 2025 by Pino

[Slomo]

That's good to hear.

Yeah they first wanted to do a diversion using a small neo-bladder made from my intestines. I would also have had a stoma pee hole near my belly button. Which would have also needed to be catheterized 24/7 and draining into a bag.

I questioned why I would need another bladder and pee hole when I already have them, and they bboth tull worked just fine. But to also need uncomfortable catheters and bags was stupid. It was only my retaining pee that was the problem, so I pushed to just have my sphincters removed. It took more than just that, but I'm still glad Iget to keep using diapers.