Bladder urgency

[donnalaidler]

Hi this is about my son who's 27 , diagnosed with ALD/ Addison's age 10, more or less fit & healthy, he having problems with bladder urgency, he had a ultrasound which showed he's emptying his bladder ok, any advice would be appreciated thank you.

[StevenSims]

Hi,

Does he see a a Urologist? The problems I had was that there's high pressures in my bladder backing up to my kidneys and was starting to damage them, my urologist sent me for a urodynamics test and this showed very high pressures and they need to be released using intermittent self catheters and I've been using them now for about 4 years and my kidneys are good? It sound good though that he's emptying his bladder! I have retention that's released with the cath, it might be worth trying medication, there's a few different ones, I take Trospium and they help me go less frequently, I'm booked in to have Botox injection in my bladder and there's a few guys that have had good outcomes with it!

All the best

Steve

[donnalaidler in reply to StevenSims]

Hi Steve thanx for the reply, no he's not seen a urologist, it was his endocrinologist who sent him for an ultrasound & because it was normal & his bladder was emptying ok left it at that & put it down to bladder urgency, maybe it would be worth going to gp & ask to be referred to urologist, not really sure what's going on as its a new thing but not getting better, pleased you're doing ok yourself, thank you for the information will look into it .

[StevenSims in reply to donnalaidler]

Hi Donna,

I kept a diary in the bathroom a wrote down the times I was going and showed my GP, it might be worth your son doing that just for a week? Then the GP will know what he's doing? At least his Endocrinologist will check his bloods regular and the Kidneys will be included!

All the best

Steve

[Hidden in reply to StevenSims]

I agree with everything Steve said, as my experience was much the same. It made a big difference when i finally was referred to a urologist and the catheters have helped tremendously.

[deirdrecorr]

Sounds like overactive bladder. A referral to a urologist would be good then medication such as solifenican and myrobegron can be quality of life changing. Assuming he's had an infection ruled out? Deirdre

[donnalaidler]

No infection , I also dip it myself just to rule out, thank you for the info guys will defnatley take it on board.

[mariagno]

I have bladder urgency that leads to leakage. It has been that way for the last 15 years.

There are many medications to treat overactive bladders. If one does not work, keep trying. Make sure you do not go to far and prevent proper voiding. That is when the bladder pressure can impact the kidneys.

I found not using an extended release form of Oxybutynin 5mg works best for me. You have to take more pills during the day but it gives me more control based on what I am doing that day.

Hope this helps.

Good Luck!

[Dideann58]

My son had that also it was bladder spasums even though he felt he had to go alot he didn't. They put him on meds for the spasums.

[vgrimaldi]

Hello,

I am 53 and have AMN for 30 years. You could do a Botox, but you might end up having to catheterize yourself. That leads into a chance of infections. A clamp can be used to stop leakage. Both work great for me. Medications do nothing. You must evaluate your condition to see how far you want to take it. Sometimes the cure is worse then the issue.

[cdp71]

Oh, the bladder. I would say that it is the bane of my existence, but that would result in my ignoring my equally troubling bowels and legs. I had bladder urgency issues for many years (I am 44 and started noticing signs of AMN when I was in my early twenties). I remember going 10 times by 10:00 in the morning. I think my problem is twofold. That is, I do not completely empty my bladder when I go and I also feel like I need to go when I only have a small amount in my bladder. In other words, the double whammy, which had me running (or rolling) to the bathroom all day. I tried a variety of the drugs for overactive bladder, but none seemed to work. One in particular (I do not recall which), gave me severe constipation.

I then met a doctor who suggested botox. I was hesitant, but finally went through with the procedure. After botox I had to catheterize because I literally could not go naturally any more. Don’t underestimate the cost of catheters. In the U.S. they cost me $300 a month with insurance, but before meeting my deductable. That blows my mind that I am paying $300 for the privilege of peeing.

Botox did lessen the number of times I went to the bathroom from 12+ to 6-7. Downsides of the procedure are that it is expensive and it only lasts for a period of time that varies from one year to four months. The last time I did it was my fourth procedure. This time I got 300 units and noticed serious side effects. First, my body became amazingly weak. I lift weights for my upper body so I was easily able to tell how much strength I lost and it was alarming. I can only imagine that my legs have lost an equal amount of strength, but I cannot quantify it. Whatever the case, my legs are very very weak right now. I have trouble just trying to stand up now. I hope that with time (i.e. one year) this will pass. If not, the rest of my life is going to be very difficult.

The other bad side effect was that my bowels shut down. I apologize for being graphic, but my bowels just do not push waste through my system. I have had to switch to using suppositories on a regular basis to address the problem. I hope this too will pass, but for now my life is severely complicated.

Long story short, I do not have any good suggestions for the bladder. I am going to have to figure that out once my current batch of botox wears off. Periodic catheterizing is probably a good thing to look into. Good luck with everything.

Chris Phillips

[monkeybus]

4-AP sorted my bladder urgency.

I have wet myself on numerous occasions. Don't anymore. Bladder is half-way normal nowadays.

Those stomach spasms are something else, though. Feel like I am turning inside out.