Neurogenic Bladder with UAB, overflow incontinence and retention

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Sorry for the long post !

After a year of not posting here, life and health got in the way of everything, I'm back to report that I finally found a urologist that took my issues seriously. Started with passing a bunch of stones caused by dietary changes but this was quickly washed aside when they found out about my high PVR. I was retaining a lot. Over 400ml several times when scanned. They finally scheduled cystoscopy and a urodynamic study.

The results were not good. They told me to empty my bladder, which I did, and gave 450ml that I thought was good. Told them "it's empty". Then they proceeded to drain another 650ml !! I had no feeling that there was anything left. None and couldn't have given another drop.

They pumped over 1000ml in and asked if I need to go. "maybe, but not really."

Long story short they found very little detrusor pressure. Bladder is just not contracting and there is only mild signal that it's filling. Even when using abdominal muscles to help I can't empty.

They found no stricture, no BPH or any physical reason for this. Purely a nerve issue they believe probably related to my dysuatonomia, spinal stenosis and long standing pre-diabetes ( that the docs ignored years ago and told me not to worry about BTW).

At this point the want me to cath twice a day and see how it goes in 6 months.

I just want to do everything I can to protect my kidneys. If that means cathing more times a day so be it.

My questions for those with neurogenic bladder, especially if you have UAB, is did it get worse? Do you eventually not pass urine at all? How do you deal with neurogenic bladder?

Thanks!

Edit - 58M, if that matters.

 

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Frequent catching. I have the same problem with retention. Sometimes the only way I know I need to go is when I wet my pants. I too have problems with high PVRS. All I can do is cath frequently

 

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I’ve had Nerogenic Bladder for nine years (since I fell down a vertical 30-foot-tall cliff on my butt the entire way, thereby annihilating all disc material between my lumbar vertebrae on Jan. 14, 2015); wow does that seem like forever ago but also the intensity of the trauma is so very fresh - almost like it happened only two months ago. My leaking has not worsened. In fact, the way my spinal stenosis has grown has somewhat made my condition better. But the treatment that helps me most is receiving 200 units of Botox injected into my bladder every three months. This effectively freezes the bladder muscle, therefore eliminating most leaks. One may receive up to 400 units at a time, and less often than quarterly, or more often than quarterly, etc. There are many Botox options. I started with 100 units and it didn’t make much of a difference so next time I suggested we try 200 units. They insert a catheter and camera through your urethra up into your bladder, then rub a numbing, anesthetizing agent all around the bladder. Then they inject your bladder muscle with a needle that delivers the Botox. Before I tried bladder Botox, my life was such a constantly-leaking-piss hell that I was extremely suicidal for several years and barely got out of bed. I was only 39 back then. Botox in particular is made to help patients with neurogenic bladder, so I highly recommend you do whatever it takes to try it. Beware that the more often you self-cath, the more often you introduce the opportunity to get a Urinary Tract Infection, and to permanently scar your urethra so eventually, very little urine at all will be able to flow out. You won’t have to self-cath at all if you try Botox, unless something goes wrong.

But I don’t have stones, PVR (you mean polio virus, right?), nor retention. My problem is that my urine comes out whenever it wants to, so the Botox paralyzes the bladder muscle so the bladder is better able to retain fluid. Might be the opposite of what you need; not sure.

I’ll say this, in seven years of my recommending Botox on this forum, not one person has ever listened to me and tried it. People would rather have permanent pieces of mesh, plastics, and metal inserted in their testicles, urethras, or wombs rather than try Botox, so I’m sure I’m just wasting my breath here.

 

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Snow All information is good information as long as it is sincere. You are very sincere and knowledgeable.
It is not easy to get people to do things, even if it is for their own good.

 

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@dougsbc This might be me too. Doc has mentioned alpha-blockers and muscarinic agonists but I don't do good with a lot of meds and alpha-blockers are contraindicated due to my POTS.

@snow

Thank you for your detailed response. I would not say that you are wasting your time at all. Every single bit of information helps. If there is one thing that I have learned from having dysautonomia and POTS, it is that the people living with things are often more help than doctors when it comes to dealing with day to day. 95% of my improvement on that is from other people and some of what I do for it seems wacky but it works.

I will need to talk to my doc about Botox but it was my understanding that that is a treatment for OAB and not UAB. I really don't need to calm the bladder, I need to get it more responsive so it actually tells me when I'm full and actually decides to contract and help get it out. Hopefully seeing the doc next week again to go over some things. Since most meds for UAB are a crap shoot at best I'm not really considering that, so if the Botox is the deal then good. Knowing that I am walking around with a PVR of 600ml bothers me a lot. I want it out. Even if it leaks out.

@Bobby103

Very true. In my 45 year of dealing with medical issues I've had to do some PIA stuff and while it works many people just won't do it. Sleep apnea is a good example. CPAP changed my life but so many people I know "won't be relying on a machine to sleep". Ok, the alternative really sucks if it gets bad.

 

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Snow, I’ve mentioned many times that I also get Botox every three months. For me, it helps the awful pain I have from my Interstitial Cystitis. Only wish it could last longer.

 

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@Justme I think you’re probably right that Botox is for IAB, not UAB - sorry.

 

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I have the same problem as i can not tell if my bladder is full.
In 2019 i had fournier's gangrene do to a diabetes medication I was taking, and the debridement surgery damaged the nerves that control the feeling of my bladder.
When i do feel the need to pee it's to late.
plus, i retain about 200 ml.
self cath was a joke they said if i did not self cath i would get UTIs so i self cathed and got a lot of UTIs no mater how clean i did the self cath.
i tried timed voids and never could and sometimes I would try to go and could never an 10 to 20 minutes later my bladder would empty in my diaper