Bladder problems

[ggallsup]

Hello all. I know bladder problems are an issue for us AMN'ers. I have problems with urgency and also initiating flow. Does anyone else have problems trying to pee? Meds don't seem to help, my urogist mentioned Botox, which I've heard about, but if you do that do you need to cath yourself? I'm sure that's not to bad, but the thought of it sounds horrible.

[JasonHarnum]

Go with the Botox..you’ll be happy you did. Yes, you’ll still need to self cath...at least I do. Curious of the others experience. Monkeybus....speak up😀

[alsrgnt in reply to JasonHarnum]

Hello! Female AMN’er and have done Botox for years. Yes. You’ll need to self cath — you’ll adjust very quickly and it’s actually nice to get yourself on a cathing schedule instead of having the AMN control your life in that regard.

Also, yes to difficulty trying to urinate on command. The bladder has two sphincters and for us with a neurodegerative bladder, these do not open and close at the same time; hence the inability to fully void.

Hope this is helpful!

Andrea

[tieaknot]

I am on the fence about the Botox as well. I had it for migraines (I know completely different) and really didn't like it for that (didn't help either).

For now I use gelnique (oxybutinin gel on skin because I get bad side effects to pills), which maybe helps a little? and pads. I'm 42 and have a lot of accidents...hence the pads every day. I am afraid to self cath but it is a fear I know I will need to overcome someday soon. No advice but just wanted to let you know you're not alone.

[monkeybus]

I've had trouble for about 20 years (I'm mid-forties now).

First, I thought it was my prostate packing up. And going in public urinals, i could't do it. Nothing to do with the presence of other men.

4-AP helps a lot, for obvious reasons. If it helps extremities like my toes, the bladder is only half-way.

I've done things like gently tap my bladder with my fingers. that works, and visualising running water.

Worst is when you start then suddenly stop. Full bladder, but cannot go again. Get up, walk around, try again.

Easier to go if I sit down. More relaxed, I supposed.

BTW, I read that 80% of German men sit down to urinate.

Drinking a lot of water helps as well, and coffee. Diuretic.

On a related note, I've just started using glycerin suppositories for constipation. Fantastic. I've said before how constipation amplifies my spasticity and spasms.

The simplest idea may be the best, maybe it's because I am not constantly tensing my colon.

[COwithAMN Administrator AMN EASIER Volunteer]

This is a timely question and one which seems sooner or later to affect us all.

I tried to ignore the urgency and leakage problems for years. My first remedy was pads, which seemed to work for me up till about five years ago. Then, on my occasional visits to the urologist, I was urged to try intermittent self catherisation, because I was retaining about 150 ml of urine. Their argument was that such retention promotes the spread of bacteria, and hence urinary tract infections (UTIS). However, I rarely suffered from UTIs.

Then, about two years ago, the bladder problems got worse. I resorted to another solution - a leg bag contraption which meant I could pee into a bag which could be emptied two or three times a day. Not exactly glamorous, but at least it worked. I still use these (Conveen, made by Coloplast coloplast.co.uk or coloplast.us) and can recommend them.

I also decided to give self-catheterisation a try. I had always resisted it, mainly because I thought that sticking a tube into your bladder was more likely to introduce bacteria! However the catheters I was given were very difficult to use without grabbing the tube itself - a bad idea if your are trying to prevent infection. Then a new one appeared on the market which I now use - Spedicath Flex. See coloplast.co.uk/SpeediCath-... It has a distinct advantage - as the description says, “The soft-squeeze grip makes it easy to guide the tip into the urethra safely without touching it. The dry-sleeve means the catheter can be inserted without having to touch the tube itself” .

When you first start to self-catheterise your sphincter can be a bit sensitive and you can notice a bit of blood when you withdraw the catheter. But I found that after a few days this stopped and I think the sphincter must toughen up and get used to it. Now it doesn’t bother me.

One great benefit is that I can self-catheterise during the night which means no trips to the bathroom. I mainly self-catheterise once in the morning and once before bed, and use the Conveen during the day. So my overall view of catheterisation has changed - once you practice it a bit it’s really easy.

Concerning Botox, I’d heard about this from a guy I know with MS who gave it a big thumbs-up. So on my urology visit this year I asked about it and I am now on a path to start, maybe next year. You have to go through the whole urodynamics process first which is a bit uncomfortable but necessary. If your bladder is up to spec then botox can be started. it’s administered again internally on the inside of the bladder. I gather one injection lasts abut 11 months.

I can also comment on the drugs part of bladder control. I started off with Solifenacin to reduce urgency and Tamsulosin to shrink my enlarged prostate. However, one of the common side effects of Tamsulosin is erectile dysfunction which is the way it affected me. I also discovered (by accident, on a BBC programme) that Solifenacin is an anticholinergic drug and that such drugs can cause cognitive dysfunction or even lead to dementia. When I discussed this with the urologist he agreed and said that such drugs have now been banned for use by pilots on some US airlines! So I stopped Tamsulosin and Solifenacin and have now switched to a drug called mirabegron. All the former problems have disappeared and this drug seems much better. It’s relatively new, approved only in 2012.

So I hope this rather extended piece is useful.

All the best,

Chris

[mariagno]

I have a problem with urgency and leakage but also difficulty in starting.

My problem was the the bladder felt full but wasn't giving a false urgency and little luck initiating a flow or only producing a tiny amount.

My urologist did a bladder test and I still had enough sensation but the bladder spasms were giving false indications to my brain.

We went with Oxybutynin 5mg regular strength not the extended release. I can take it 4 times a day as needed.

By relaxing the bladder, it can hold a larger amount of fluid. Now, the bladder becomes full and the natural elasticity of the bladder can initiate a normal emptying routine.

What had been 12-15 times a day feeling the need to urinate with little results became 4-5 a day with natural volume and stream.

I went from producing a couple of ounces of urine many times a day to producing 12-14 ounces only a few times a day.

One warning, if you have incontinence you have to heed the body's alarm to go. The amount of urine is a greater amount.

My schedule for the Oxybutynin is "as needed". Sometimes I take 2 a day and sometimes none at all depending on what my day is going to look like. It helps best at night to allow me to sleep all night.

[Aaron98]

Detrusor sphincter dyssynergia is what this disorder is called, and it is extremely common for people with AMN. I take Myrbetriq, and it helps reduce urgency some, but no medications I have tried have helped with the difficulty of voiding. I also have to sit down to urinate, and often have to push down on my bladder, or nothing will come out.

My urologist has mentioned surgical options and botox, but both can cause other problems, such as incontinence and retrograde ejaculation. As with many other aspects of this disease, there really are no great solutions and certainly no perfect answer. It seems that most people end finding a routine that works at least marginally well for them, whether using a catheter, taking some form of medication, or altering their habits.

[COwithAMN Administrator AMN EASIER Volunteer in reply to Aaron98]

I believe Myrbetriq is a branded product for the drug I take called Mirabegron. See my earlier post.

[wilburlois15]

If my bladder is full (which for me is 200ml) then I stand up and go no problem. If it isn't then I usually have to sit down in order to relax. Give it a bit of time and it'll empty.

During the day I have few problems aside from the usual urgency but after 15 years I am used to this. It's worst at night ... not sure why. Many times I have woken up needing the toilet, got up, and the sensation has gone away. Seems to be something to do with lying down.

Just in case get your prostate checked ... anyone 40+

is advised to do this if they have bladder issues regardless of the fact that you have an underlying condition.

[StevenSims]

Hi, I have had Botox twice and I think it's amazing! I had it in January this year and it's wearing off I'm booked to get it redone next month! It's lasting approx 7 months for me but some people last 12 months? There's been a study that shows the more often you get it the longer it lasts? The best I've found is that travelling and not needing to stop for the toilet also no urgency and leaks and brilliant that I don't wake up in the night to go! The downside is that you'll never be able to urinate naturally again as there's muscle wasting on the sphincter muscle! And quite uncomfortable if you are out and about and forget to take some caths with you! I was using self catheters before but still going approx 12 times a day and waking up in the night to go! With the Botox I go 4 to 5 times a day! Even now it's wore off I'm going 8 times! I think it as positively changed my life and I would recommend especially if you are struggling!

All the best

Steve

PS if you have any questions give me a shout?