Acute Disseminated Encephalomyelitis (ADEM) Support Group

Unable to wee

Did you lose the ability to pass urine? If so how long did you have your catheter before gaining function back? Or what happened ?

Thanka :slight_smile:

My daughter was unable to wee whilst getting worse with what was diagnosed initially as MS. Realised the seriousness of that and other things happening fast so we called ambulance and she was put onto catheter immediately at hospital and it was kept in for just over a month because she was totally incapacitated. She was able to resume thereafter but weeks later she was diagnosed with damaged nerves in the bladder and now has to take tablets to reduce sensitivity and now needs to be careful what she drinks, no alcohol, and when she drinks before bedtime and self catheterises once a day before bedtime because she is unable to totally empty the bladder, always a residue left behind which aggravates the bladder. She has to visit doctor often for urine tests as infections set in if she’s not careful. Hope this helps.

Tolterodine tablets .

Talk to your primary doctor or your neurologist about going to PELVIC FLOOR SUPPORT THERAPY. Apparently depending on where on the spine the ADEM hit can make you have either a spastic (closed) or flaccid (open) bladder. There are a lot of muscles that control that area, and they need therapy to work correctly. That’s what I did - it’s not fun, and it’s rather challenging (which is why you need to go to a physical therapist that specializes in pelvic floor support therapy) but it made all the difference.

I still get challenged to “let go” from time to time, when I’m tired especially, but then I do my exercises for a few days and it becomes easier again.

Best of luck! Laura

Thank you, gives me a little bit of hope. I had my catheter in for 2 weeks, and had a trial of void yesterday but failed. So they have inserted another catheter for 6 weeks, and then try again :frowning: thanks for all the advice :hugs:

Hi there! My 13 yo son came down with ADEM mid-October. His initial presenting symptoms were INTENSE fatigue, lethargy, numbness, and then an increasing difficulty peeing. He not only had difficulty initiating a urine stream, but would feel INSANELY full regardless of whether he was FULL or whether there was hardly anything in there. It was causing him severe pain. When he WOULD begin peeing, it would stop and start, which hurt like hell.

Once he was hospitalized and put on life support for his breathing failing, he had a foley cath put in. He had his catheter in for about 3 days, maybe more. But his steroid treatment jump started his recovery in an INTENSE way, he was MUCH better within a few days, and was discharged entirely after a week in the hospital, after being near death. The neurologists and everyone were shocked! He’s made an almost ENTIRELY full recovery, with no urinary trouble besides it sometimes taking a second to initiate a pee stream.

Best of luck.

How old is your daughter?

Hello Sasha,
Being a man, I figure it must be slightly different, but losing the ability to wee, was one of the first symptoms I suffered.
This was 18-19 years ago now.
I did have dizziness and disorientation (tripping over and such), but the ability to wee was the first really hospital worthy thing that happened to me.
By the time I got catheterized, I honestly thought my bladder was going to burst. I remember being amazed at the time, that the nurse didn’t believe me until I insisted they catheterize me and she saw the volume.
I was catheterized for… maybe 8 - 10 weeks I believe, although it was a while ago now, and when I was un-installed (trying to think of a better word), I couldn’t initially wee.
However, a rather helpful nurse instructed me on how to sit and massage my bladder to help induce me to wee.
Honestly, this worked but was difficult.
The method and technique took some time to master properly.
Friends going to the loo, would take moments, then when I went, it would take me several minutes to empty my bladder.
However, it was better than being catheterized, and I’m still doing it now.
I find it amazing, when I think of what we can adapt to in our lives, to accommodate us living as normal a life as possible.
There is a name for this method, but I forget what it is.
It’s basically sitting and gently pushing/massaging your fingers into your lower tummy until it helps you to wee. Takes some practice, like I said.
Anyhoo, I hope you have a more straight forward recover from the weeing issues, but if you don’t, there are other ways, and you can learn to live with them.
All the best :slight_smile:

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MamaLyn, welcome to the ADEM community. Great to see you posting! I’m sure Sasha was delighted to get such a detailed and helpful response. That’s what Ben’s Friends is all about: supporting each other. We’re glad that you found us, and we hope that you will be too.

Seenie

Thankyou all for your replies, super helpful! maybe there is some light at the end of this very long tunnel! :heartbeat:

As a male I am now able to start walking and I’m experiencing the same thing you were with difficultly feeling if your bladder is completely empty. Has any of that feeling recovered or is it going to be a thing ill just have to adjust to?

Hi Chris,
I suppose it all kinda depends on how far you fell, and how far your body will allow you to recover.

For my story, my bladder became hyper sensitive, and doesn’t give me much warning before I need to go. I can go, and empty, with some effort and time. All about technique, But honestly, you’ll be surprised just what you can learn to live with.

If something similar is your fate as well, you’ll adapt and learn to cope with it somehow. I have urinary problems, but have managed to lead a fairly normal life by trial and error.

People wouldn’t, and don’t, think there’s anything wrong with me as it is.

My close friends and family know, only because I’ve told them.

Having said all this, I hope you recover completely, or near as damn it.

I’m happy to talk with you about any of these things if you wish.

I wish I had someone to pass things by in the early months/years.

Drop me a line if you need anything.

Cheers,

Mike

I’ll keep you updated as far as progress on recovery if there is any. But after I was paralyzed, my affected area had nerve damage which was my chest down to my feet and my hands and forearms. I had lessons on 7 of my vertebrae and right side of my brain but I know my bladder was affected because I had a catheter in for 3 weeks. I don’t know if bladder nerves reveal or if it’ll get better but I’ll let you know

Hey Chris,
Well, it might be nice/encouraging to know, that I had a catheter in for 6 or 7 weeks and got feeling back.

I can feel when full and empty ok, just problems with the act of urinating, but I think that’s as much linked to the position of the huge lesion I had.

I’ll keep my fingers crossed for you.

How long ago did it all happen?

Are you walking?

Don’t mean to be too inquisitive, so no offence taken if you don’t want to talk about it.

Speak soon,

Mike

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This happened on march 17ish when i went into ICU, but now i am almost back to walking normal now. I to to the urologist soon and maybe they can give me some more info on what to do with this although i think im able to handle this on my own.

Hey Chris,
Try not to stress to much, I had my catheter in for just shy of 3 months. I too had multiple lesions on my spinal cord & brain. According to my doctor’s due to lesions on the spinal cord it takes longer for your bladder to recover. I’m almost 5 months on from first being diagnosed and I still struggle day today. But definetly feel like I’m improving daily!

Stay positive :upside_down_face: