Urine problems: Am totally confused have had lots... - AMN EASIER

AMN EASIER

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Urine problems

spalding profile image
5 Replies

Am totally confused have had lots of tests on bladder camera test urodynamic testing consultant said all looked fine let I still feel bladder is full and get the urge to pee have got to have ct scan on kidneys he did not know if connected to Amn any ideas

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spalding profile image
spalding
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5 Replies
StevenSims profile image
StevenSims

Hi, a neuropathic bladder is one of the biggest symptoms of AMN! The bladder muscles spasm and don't relax that's why we get urgency! Think of a water balloon not being able to expand when filled! Because the bladder muscles are stiff it doesn't hold so much! My urodynamics test showed very high pressure in my bladder and was killing my kidneys and they told me unless I self catheterise at least 4 times a day I would have to go on dialysis! That was 2011 and since using them my kidneys are now good but for the past 2 years I've had Botox injections in my bladder and this numbs the bladder allowing it to expand so instead of going 12 times a day I only go about 4 or 5 times! I think it's fantastic especially when traveling! The only downside is you can't go normally and can only go with a self catheter and It only lasts approx 6 to 12 months! I'm booked in to have it repeated in November!

All the best

Steve

monkeybus profile image
monkeybus in reply to StevenSims

Yeah, neuropathic bladder.

Here's my story.

For years I would wet myself, but since I've been on Lyrica I generally go 4-5 times per day.

Not much volume, either.

Asked my doctor, he said don't worry. Hmmmm.

Actually going is hard. Have to visualise flowing water.

All in all, going to the toilet is hard.

bluejadedwho profile image
bluejadedwho

I had dealt with neurogenic bladder for years. Constant urgency and never being able to empty completely. 2 years ago, I had to go to emergency as urine was backing into my kidneys and causing them to fail. I now self catheterize and take myrbetriq. (This medication helps to minimize any urgency). I am not able to go without catheterization, and have no leaking at all now. I now feel I have conquered this symptom that was controlling my life and greatly interrupting sleep.

All the best,

Patrick

Pcutsor profile image
Pcutsor

I wish I started using Caths years ago. I was backed up 5 years ago and my Kidneys were going down. They got better but still not great. Seeing a kidney doctor now and have a test next week to see how they are funtioning. My left one shrunk some. My potassium goes up when the bladder gets to full so now I have to pee 6-7 times a day. Try to keep it at 12 ozs. I pee at 4am so I never get to much storage. I don't leak at all. Wish someone whould of told me about this shit years ago. Pat

changnoy profile image
changnoy

I follow this webite now for almost 9 months.

The reason why I have never replied on a forum post is because my main language is not English but dutch.

Later on I can post all my personal experience concerning amn if someone wants to hear about it,in short you could say if you search for all the bad symptoms of amn in for example wikipedia you would say,hey that is changnoy .Only if you know me in real life off course.

But now first , the bladder problem.

For 5 years now I am the owner of a suprapubic catheter replaced every 5 weeks.

I used to catheterize myself 5 .6 times a day but it became to much for me after some time.

I had to write down how many times a day I had to go to the toilet without using a cathether. It was 29 times in 24 hours.

At night I could not sleep ,and when I was so tired I felt a sleep i woke up all wet.

That is why the doctors decided to make a small hole in my belly and place a Suprapubic catheter.My bladder is always almost empty now.

enough for now.

greetings

Changnoy

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