Neurogenic Underactive Bladder

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Hi!
I'm new to the forum. It's so good to find a place where we can discuss these topics. Was diagnosed with neurogenic bladder a few weeks ago. It came on rather suddenly. My issue is an underactive bladder. I had a foley for one month and then realized it was time to accept my diagnosis and learn to self-cath. Initially I thought I'd never be able to do this. It was difficult at first but has become easier as time goes on. I still don't know the cause of the bladder dysfunction. Had a test for Lyme disease (negative) and am scheduled for MRI in a few weeks to check for signs of Multiple Sclerosis. If that turns out negative, do any of you have any suggestions for me to help find the cause? I realize I may never know, but cannot help feeling that I need to leave no stone unturned, in case there is an underlying treatable condition. My urologist does not seem too interested in helping determine the cause.

 

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Are you on any meds?

 

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No. Urologist said they wouldn't do any good.

 

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I mean meds for anything else...hbp, antidepressant, stuff like that

 

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Are you having an MRI of the full spine or are they imaging only your brain to check for signs of MS?

This might be irrelevant since I don't know your medical history, but tethered cord is another possible cause of neurogenic bladder. A lumbar/sacral MRI would be most likely to catch tethered cord on imaging, BUT it can be radiologically occult. Dr. Google can tell you more about other tethered cord symptoms.

My own problems were with neurogenic urinary retention and overflow incontinence. I had surgery to detether my spinal cord last spring and it did help somewhat with my urinary retention and incontinence. My tethering was not visible on MRI, but was readily apparent during surgery.

If the symptoms sound familiar to you, I'd try to find someone near you who specializes in the condition, probably a neurosurgeon/neurologist. My urogynecologist was also not terribly concerned with finding the cause of my issues, but my neurosurgeon urged me to have surgery promptly to avoid any further loss of bladder function.

Good luck!

 

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@NoCans
Currently am taking Coumadin for a blood clot discovered earlier this year. No other meds.

 

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@quirkyone
Thanks so much for your reply and good advice. As for the MRI...it's only of the brain. I will do some research on tethered cord. I have heard of it as a possible cause of urinary retention.

I hope your bladder function continues to improve. Best of luck!

 

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I have neurogenic bladder, that is underactive. Yes, once they think they find what they call a answer, then they try to push you to start straight cathing, and yes you stuck with the Foley for a while, as I did, in fact I straighted for a well then kinda got upset then had the Foley for almost 2 years. But had several infections, so my nurse called me and said you need to come in right away. You will go home straight cathing, or you will get a suprapubic.

I went in to my PCP, and she took it out( urologist didn't like it, but so what) been cathing since, (3 years) ok, my PCP suggested another urologist, I trust her, went, he gives me options of what I need, (str cath or Foley) they insert a very large Foley, I need to keep in so it dilates (usually a week) then take it out and I can self cath again( gets harder to insert, I'm suppose to go in then)

Ok, I'm tired of this too. Looking at other options.

Talk to your PCP, I know changing urologists helped me

 

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My PCP is not interested in helping. She has one foot out the door (is retiring soon). I'm looking for a new PCP. Boomersway, I sympathize with you and feel the same frustration. One thing my urologist suggested was a device that is implanted in the lower back that delivers a nerve stimulation that allows the bladder to empty. It's operated via a hand held remote. Have you heard of this? Not currently interested in doing anything this permanent until I explore the underlying cause and do more research. There is little research done on this issue in women, since it's so much more prevalent in men.

 

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Yes, my urologist offered me either the Interstim (which is implanted in the back) or a Suprapubic catheter. Or go back to Foley.
Like you, I don't want those,,,,yet, as I might not have many choices

 

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I was told to either use the Interstim or catheterize and that meds would make it worse which they used to. I have a low back injury. First PCP said I am sending you to a urogynecologist cause you need a bladder sling. You have a bladder prolapse. Then left the practice. My second PCP left the practice after strongly suggesting I research and use a pessary. My specialist was mad that I was asking a lot of questions about Interstim cause I wasnt yet comfortable with everything from anesthesia to the procedures themselves and beyond. The whole thing seemed more disconnected than connected to me. My surgeon and I parted ways cause that device should never be used on an area of muscle injury. I talked to an old nurse with my same symptoms who now uses a pessary ring and that has been helping her.
I got a pessary ring which began to help, I try to time trips to two hours so I am not retaining urine from forgetting to go and then later having a surge incident which is never good, I self catheterize which reduces urge overflows, I know my fluid intake at all times and completely avoid caffeine, I use an anterior external massaging TENS unit made by OMRI available from local drug stores to help me hold urine in between trips and tone muscles, and biofeedback helps, too. I am not putting the Interstim in because it will cause severe unbearable pain to my injured back area and that I can't live with. So I am using other approaches.
Hope maybe one of these will help you.