No bladder sensation

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Hi there, I have been struggling with urethral urgency feelings for almost 3 years now. This is not helped by the fsct that I have no bladder sensation so dont know when my bladder is full or when I need to wee. So its all a guessing game. And sometimes I even forget to go! Not good and its has ledt me suffering anxiety re losing control of my bladder in public. I was at the urologist not long ago and she gsve me an input/Output sheet to fill in. I was a bit shocked to discover the other morning at 8am when I went for a wee that there was literally 1 litre of wee in my bladder and I couldn't feel it! So no wonder I dont feel lesser amounts either! Anyone else experienced this? Tia

 

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Yes, I have the same issue with my bladder. No feeling when or if I need to go, till at times I have to go right now, and sometimes my bladder neck will hold, sometimes it opens freely and empties no matter where I'm.
Self cathing has helped, and Foley catheter at times, and of course incontinence protection, normally super absorption.
Also medications to help me accept and be calm

And urinary meds to calm my spasms, that can be so hurtful, as of right now. I hurt

 

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I have incontinence with no sensory awareness is the diagnosis caused by my congenital spine and the way my nerves are routed. I don’t know when bladder is full or emptying, sometimes I am continually releasing and sometimes it is a flood. I obviously do know when I am wetting when I feel the temp change down there. I had back surgery almost three years ago and started having the sensation when going, I thought holy crap I am going to be able to get out of diapers, I was going to pelvic floor rehab and I was getting better and was able to wear just pull-ups. Unfortunately one day the feelings just disappeared. So I have been back to full diapers for the last year and don’t see anything changing unless I go through another back surgery which I am absolutely terrified of doing that as it would be such a major surgery.

 

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Mine is not so much no sensation as confused sensation. I might feel like I am going to burst, use a catheter and only get 200ml. Other times I may be leaving the house and use a catheter just in case and get 800ml. I also get spasms when my bladder is determined to empty itself even if it is only 10 minutes since I cathedral myself.As a result of all this I wear protection all day. Strangely, my bladder behaves much better when I am lying down. Phil

 

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I have very little to no sensation, I have been wearing diapers now for 14 years and like wbwayne11 said usually the only way I know I’m going or went is the temp change in the area. It’s very odd to loose that control but it’s jot the end of the world!! Find your way to manage it and talk to your Dr to see if there’s a cure or way to help manage without absorbent products. Incontinence is a cause of another problem going on and hopefully yours can be fixed!! Best of luck and stay in touch!!

 

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Amazing, I wish Urologists would read this post, as seldom do they listen to what is wrong.

 

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Really sorry to hear that Boomersway. I just make sure I go quite often during the day to make sure I'm not caught out, however that doesn't stop the urethral urgency feelings from coming. It must be so difficult for you having accidents no matter where you are. Glad that self cath etc has helped. I too wear protection, even though the worst has never actually happened. It's felt awfully near at times. I have wondered about medication to keep me calm. I've not got any urinary med either as I didn't think there was any to help with the urethral urgency feelings. I'm sorry to hear you are hurting so much.

 

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Hi Wayne, Sorry to hear you have incontinence and no sensory awareness either. It sounds like you are really having a tough time of things and I really feel for you. I too would be terrified of having another back surgery too. As you say, it's such major surgery isn't it.

 

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Thank you BasilCat for your caring kindness, yes, the medications to calm me help, and my Dr. told me I need to be on them now. Some days are better then others as I'm sure other friends here can attest too. I have a very supportive group around me, my PCP has me email her whenever I want, and its makes things better.
I hope you get some relief as this is not easy.

 

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Boomersway, You hit the nail on the head. Urologists have never really listened to me. I will see how I get on with my next appointment next month.

 

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@BasilCat You didn't mention if you have ever determined the cause of your condition. I hope your urologist can find it if you don't already know and also find a way to help you.

 

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@Boomersway the urologists I have come across are very good at surgical procedures, but not so good with chronic conditions, Phil

 

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yes I too have no sensation when I have to go

 

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Thank you so much everyone for your comments and telling me of your difficulties very difficult stuff indeed.. Yes some days are better for me too. And having a support group to turn to sure helps doesn't it. No I have no idea what caused my condition, the bladder numbness I mean. Although I suspect it was one of two things.. 1) I had my 2nd hip replacement shortly before the numbness began. I think that maybe the anaesthetist hit the wrong place in my spine when he gave me the spinal or 2) I had an awful and painful urgency episode in the town centre that came on suddenly and really shocked me. How I managed not to wet myself in public, I have no idea but it was a miracle. I drank too much water probably before going into town as it was one of the hottest days of the year of the year. I am wondering if all that liquid in my bladder damaged the nerves somehow. I will be telling this to the urologist physio next week. The urethral urgency feelings came on not long after the urgency episode.
Thank you again every one.

 

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Thanks again everyone for your comments. I will have to see what the urologist/Physio says on Wednesday about my condition. This having no sensation (Amongst numerous other issues) is the pits isn't it.

 

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Like Physlink, I don't have as much trouble when I am lying down. My bladder spasms without warning during the day, but at night I usually wake up dry and don't get a spasm until I'm on the way to the bathroom. Maybe not much has made it to my bladder until I stand up. I don't really feel when there is some in my bladder before it spasms; sometimes I go with no feeling, sometimes I feel like I have to go but there is nothing there, and sometimes I am sure I can feel drops running down my skin, but I'm dry (if it gets warm, it is happening). The brain plays a lot of tricks.

 

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I cant feel when my bladder is full either..Well..i sorta can but by that time its too late. Mine was caused by a drug overdose (i am clean now for 3 yrs) and i was technically dead for a short period of time. I have not seen doctors like i should-only when this 1st came about and i never followed up with the urologist. Dumb, i know..I cant really feel my bladder or can control those muscles really-Sometimes i can a little bit, i think, but i still cant feel whats going on. I actually usually will push out even more urine when i try to squeeze down there. Its strange..
I wish i knew if the overdose was what caused my incontinence bc i remember 2 nurses angrily forcing a catheter in and then back out bc i couldnt pee in a bottle for them on command. And when they had it in, one of them was standing on her tiptoes, mashing down, with both hands, onto my bladder trying to force enough pee out into that bottle..And, i remember a sharp then dull pain down there as she did this and pee started coming out and it just felt..odd. And,ive never been the same since..
Now that im clean and ready to face this and look for answers and possibly solutions, i dont have insurance and definately cant afford doctors visits..idk what to do..