OAB & neurogenic bladder questions

[Anonymous12]

Hi all,

  Hi all,

So even though the ultrasound test didn’t work out on Monday, I saw my urologist via Zoom today and through the process of elimination of possible causes, we were able to come to the conclusion that I have neurogenic bladder. I was hoping that the cause was something else besides my cerebral palsy but it doesn’t look like there are any other potential causes. It’s not the result I would have liked but I have to deal with what I have.

I already found comfortable diapers that I like that last a long time as well so I don’t completely wreck the environment throughout my lifespan. I’m also learning how to allow myself to use them when I need to in order to get through a meeting and/or class. This past weekend I took a lot of breaks and I feel like I missed a lot during class so I’m looking forward to seeing how my strategy works.

I’m hoping that my acceptance and confidence will help me to move past the part of me that is afraid to engage with friends/potential partners.

I‘m also hoping to adapt if it does get worse over time. The only challenge I have right now is when I bend over and my waistband gets exposed. I feel like I want to own this part of me because stigma thrives in silence but I also don’t want people to think I’m not smart.

 I do have a couple questions:

Did either of you have a ”normal“ bladder before developing neurogenic bladder? How did you adjust?

Also, how do you guys wet when you need to? I sometimes have long meetings and I wish I could let out a little bit so I’m not uncomfortable.

Thank you to all who listened and read this, any advice would mean a lot.

Thanks!

[zzyzx]

1 hour ago, Anonymous12 said:

So even though the ultrasound test didn’t work out on Monday, I saw my urologist via Zoom today and through the process of elimination of possible causes, we were able to come to the conclusion that I have neurogenic bladder. I was hoping that the cause was something else besides my cerebral palsy but it doesn’t look like there are any other potential causes. It’s not the result I would have liked but I have to deal with what I have.

I’m hoping that my acceptance and confidence will help me to move past the part of me that is afraid to engage with friends/potential partners.

Learning to accept what has happened is a major (first?) step.  When adult onset of secondary nocturnal enuresis hit me I made a deliberate decision to not let it stop me from doing things, while working in parallel to try to find short and long term solutions.  Unfortunately for me, long term, my issue isn't going to go away.  And I've added issues from how BPH was/is handled to my mix.

 

1 hour ago, Anonymous12 said:

I‘m also hoping to adapt if it does get worse over time. The only challenge I have right now is when I bend over and my waistband gets exposed. I feel like I want to own this part of me because stigma thrives in silence but I also don’t want people to think I’m not smart.

That's part of why I've picked up white onesies in place of t-shirts.....

1 hour ago, Anonymous12 said:

I do have a couple questions:

Did either of you have a ”normal“ bladder before developing neurogenic bladder? How did you adjust?

Also, how do you guys wet when you need to? I sometimes have long meetings and I wish I could let out a little bit so I’m not uncomfortable.

I would consider my bladder to be "normal" before things hit.  For me, one of the things I did initially was try to investigate what medical research was available at the time.  Over about 1.5 years I spent a fair amount of time at the local university hospital library on a number of Sunday afternoons where I could freely use the tools there to search for more information....  Ultimately, no real additional info for my case....  Also tried meds -- not 100% effective, so what is the point?  And the alarm systems only managed to make holes in underwear (where attached) and run down the batteries....  So, eventually, acceptance that it would not go away.

And then using watching and waiting for PSA eventually hit the bladder from BPH side affects - reduced bladder capacity....  While I've recovered some capacity (post surgery), I'm not back to my old capacity and my Urologist doesn't recommend attempting to go further on this....   So, eventually one has to accept where one is at and live with it. 

Best wishes on how things progress with you. 

As to wetting when you need relief but can't run off to a bathroom, I'll let others comment on that....  I'm still in the phase of trying to keep what daytime control I have.  However, from issues related to BPH, I know I leak a little bit some times during the day at this point.  And sometimes I know it would be real easy for me to "let go" when the strong urges hit during the day....  I'm trying to not do that....  And I have enough capacity to (mostly) hold through a short urge and have reasonable frequency for bathroom visits.  Based on overnight (when I'm already wet), I do know I don't have a problem re-warming a wet diaper....