urine retention

[jordlee21]

has anyone with AMN suffered from urine retention? had to go to A&E for a bad water infection was leading to sepsis. catheterised and drained 3litres out of me, in hospital a week. couldn't pee naturally so had a flip flow catheter in for 7 week until it just came out balloon popped. urology showed me how to self cath doing this now 5 times a day, still getting the urge to pee strongly but not much coming out. fed up can't understand how I've gone from incontinence to hardly peeing at all. now always feeling bloated and uncomfortable.

[monkeybus]

Don't get me started. Urine retention, constipation.

That, or I have to rush to the toilet (as fast as someone with spasticity can rush), or I'll wet myself.

Not as bad as you, but what used to be a 10 second job can take me up to 10 minutes. I just sit down, relax and read my phone.

A few of us take medicine for it. Cannot remember the name. Someone is guaranteed to chip in on this one.

[COwithAMN Administrator AMN EASIER Volunteer]

You have been having a bad time and I’m sorry to hear your story.

My first question is do you have a regular urology check-up at your local hospital? Getting an A&E intervention for what was an emergency is one thing, but you need to be on a regular urology review at least until things stabilise.

It sounds like you were given an in-dwelling catheter since you talk about the balloon having popped. I know what you are talking about as I had a similar experience when I got sepsis and the hospital decided I needed a temporary in-dwelling catheter.

I have never wanted to go down the in-dwelling catheter route because that type tends to lead eventually to bladder UTIs or sepsis. See ncbi.nlm.nih.gov/pmc/articl...

If you are peeing very little right now it suggests that your kidneys may not be working correctly. Perhaps this is all related to the sepsis.

Anyway. you need to get a full and regular examination by a urology specialist who also understands neurology-related problems to get you over this episode.

Looking ahead, I can only give you my experience. I self-catheterise twice a day (sometimes three) and I use Speedicath products.coloplast.co.uk/co...

These catheters have the great advantage that the tube is enclosed in a plastic sleeve so you can’t inadvertently handle it and introduce bacteria into your bladder. I am fanatical about infection-control.

I also use the Conveen sheath and leg bag which means I don’t have to catheterise as often. I just leak into a bag.

You’ll have to get advice and work out the best on-going solution that works for you.

Let us know how things progress.

[jolocny Volunteer]

Sorry to hear of these troubles! I've experienced urine retention but nowhere near what you have. It's very important that you find a urologist that will help you through all the steps of this.

From what I've been told, kidney problems are the result of not voiding completely. I, too, sit for a while and continue to void after a few minutes. I also constantly wear bladder leak pads. I get to the bathroom and by the time I get all my garments off, I've almost completely gone into the pad, very little left for the bowl. Totally different problem from yours!

I'm concerned to hear this as the neuro doctor at Johns Hopkins has stopped seeing me because I hadn't been catheterizing - but I still work and, for other reasons as well, still don't self-cath. But I don't have problems going and sit for a while after and 'go again'.

Finding an outpatient procedure to assist with my problems is tough in the US due to covid cancelling most elective surgeries.

I wish you all the best in discovering what can be done!