Neurogenic Bladder-Anyone else have this? Mind sharing your experiences?

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One of my friends had mentioned this sounds similar to my experience, but I am waiting to hear back from doctors. Does anyone else here have this issue?

 

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Yep!!! Unfortunately!! Being that it's neurogenic I will probably be in diapers the rest of my life.

 

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As my doctor said after my urodynamic study 20years ago, and my history of bedwetting and daytime struggles that I most likely had this from birth. I was also told my bladder reacts more or less like a babies in that my brain/bladder connections just don’t function properly. I was recommended surgical procedure that “may” help. My history of surgery in my life has not been good so decided not to go that route. I’ve lived in nightime diapers my whole life so that was ok and decided to go 24/7 about 16 years ago to help with the daily stress I had regarding leaks. Immediately life became easy and I was relieved to not have to worry about embarrassing situations anymore. Everything about it now is just matter of fact. Wearing diapers is simply the best method of dealing with it.

 

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That’s my official diagnosis.

 

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I was given the same diagnosis some 20+ years ago after many, many test and drugs (none of which helped). Something we learn to live with I guess. Or at least I did. Just remember, "We are only given what we can handle", at least this has been my belief.

 

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I have it as a result of radiation damaging my spinal cord--about three years since the radiation treatments (to clear up any errant cancer cells after myeloma surgery on my spine.) I only got a proper diagnosis one year ago, and have had a novel treatment with a cancer infusion treatment to help the necrotic lesions on my spine heal--this was my greatest stroke of luck ever! However, no one told me until four months ago that I was almost certanily retaining urine (comes with SCIs). Peeing was getting harder for me anyway, and I began cathing 3xday with impressive collections of urine! A urogynecologist has been helping me the past two or three months to retrain my bladder so that I am now naturally peeing more than is being cathed. First, she cleared up a UTI that was pretty bad before I could actually feel something was not right. She prescribed Flomax to help my uretha relax and release urine. That should also help my brain and the nerves to my perianal area get re-oriented. We are hoping that I am able to restore urinary function and pee more normally and be in charge of it! I am female, and am using the intermittent catheter kits (not so easy as my husband has to help me and it's a bit of a production.) I was scheduled to get a suprapubic catheter yesterday,part of the plan to wean me off of cathing, but the interventional radiologist performing it insisted I be off of Eliquis for FIVE DAYS, although my PCP had said only two days. (I had a pulmonary embolism 1 month after the back surgery!) I don't know how many weeks this will be put back to reschedule now, but I was looking forward to having more control and less bother than cathing required (although I will have to have the suprapublic draining tube replaced monthly or so. I should also add that my outstanding APN/NP sister had me start getting pelvic floor therapy during early onset of symptoms--a great suggestion that I think has helped me maintain what control I have and have gained.

 

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Yes I have neurogenic bladder thanks to lesions on my spine from a multiple sclerosis attack.

For your sake Koigal hopefully yours isn’t neurogenic because then you have a hope of it resolving itself lol . Otherwise you will have to accept it and almost embrace it like the others on this forum which have stated they have been diagnosed with neurogenic bladder

And my thoughts are one might as well accept, embrace and move forward because it’s not the end of the world and life is passing you by if one gets stuck in the victim mentality.

Cheers

Jason

 

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@Jwh51 Well put; I concur.

 

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I have a paralyzed neurogenic bladder from a fall down an escalator. When I fell I hit at just the right angle to do damage. I’ve failed at intermittent catheterization, had a suprapubic catheter which I hated and had taken out, and have resorted to just using heavy diapers. Not the best but it is what it is. And I’m glad I’m not sticking things up in me or have a tube coming out of my stomach.

 

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Hi EJ, those are things (sticking things up in you and having tubes coming out your stomach) best to be avoided at all cost if at all possible!
Falling down an escalator had to be pretty terrifying and I hope it wasn't a long escalator. The longest one I've ever been is at Orlando Int'l Airport and it goes from the bottom of the parking deck straight up to the main check-in area and it has to be at least six stories nonstop! To be honest, I was most happy to get off that thing!!!