Kinda need answers as it is driving me NUTS

[TOM 23]

Well I absolute HATE my bladder being so unpredictable and no answers and driving me completely bonkers well started when I did my back in 2009 and have diagnosis of Degenerative Disk Disorder and compressed nerve at L5-S1 as well of course Incontinence because of back.

My bladder is not consistant or predictable which is driving me nuts as I am both OCD as well as Asperger's Sydrome which have issues with things being out of order and need consistancy on toop of that numerous Anxiety disorders and Bipolar type 2

Bladder behavours inc but not consistent dripping, spasms, becoming painfully full and very rarely wet when I sleep( and not that much leakage).

Also when I pull depends underwear up it is usually damp/wet but don't feel that i l"leaked and its been a cool day.

I'm kinda confused what to do because with my g.p not having any answers and don't have a urologist I wonder if there is any way to make the bladder consistant and not spasm or painful (even if it means no controll( leak all the time) as I doubt I will ever have full control sorry if this offends any one

Hopes this makes sense

[JoeK]

Answers, and especially "good answers" are few and far between when it comes to incontinence, sorry to say!

Best guesses and "let's try this or let's try that and see what happens" is more the rule when it comes to incontinence.

For the best shot at getting answers, I think you need to go to a urologist, they are specialists and will run all sorts of tests on your bladder. Your GP can refer you to one (or more) for consideration.

Be sure to fill in whatever urologist you choose, on your back issues and see if the urologist can come up with some treatments or answers.

Best of luck to you, Tom 23

[Papa]

Joe, as Tom said "first go to the doctors and makes sure they can not help with the physical and mental issues that you need to address". Going totaly incon may seem to be a solution because of the OCD and other issues - but it is also the last thing you should do before checking deep into other options. I now have some control - not enough to trust but a lot better than when I went over 2 years with absolutely no feeling of wetting. I just could never judge how wet i was most of the time and learned I had to just time diaper changes. And not always successful at that. So aggressively go after the medical community and see what they can offer first. Papa

[Papa]

I obviously mixxed up names Tom and Joe....sorry Papa

[bcca]

The "I'm painfully full, I wish it would just let go instead of hurting" thing is very familiar to me.

When I'm not on any medication, basically *any* amount in my bladder is painful. It's only recently that I've started to realize that this isn't "normal", that it's not this painful for most people. I guess I always figured most people were just really good at pressing on regardless of the pain.

The first draft of this post had a description of a frustrating/painful situation that I kept getting into, when I wasn't using medication and was wearing diapers full time. I figured it was TMI and removed it, but -- trust me, I do know how it feels to just feel like "Hello, body! You're wearing a diaper -- don't experience pain, just *go*! It's okay! Really!"

Have you considered a catheter, to keep your bladder empty all the time? They're pretty easy to learn how to put in. They also come with their own discomfort, but that discomfort may be more "predictable" for you.

Good luck, and keep us posted how things work out for you.

[DDS]

I suffer from a neurogenic bladder due to nerve damage. I do not get that "I'm painfully full" feeling which I guess is a blessing. I get daily bladder spasms but again no pain. Just a fluttering sensation in my bladder region. Another blessing of sorts is I seldom release more than a few ounces of urine at a time so embarrassing leaks in my protection are few and far between unless I try and go too long between diaper changes. It took a long time for me to accept it all but I've learned to deal with it and managing it has become second nature to the point I seldom give it much thought.

[TOM 23]

I suffer from a neurogenic bladder due to nerve damage. I do not get that "I'm painfully full" feeling which I guess is a blessing. I get daily bladder spasms but again no pain. Just a fluttering sensation in my bladder region. Another blessing of sorts is I seldom release more than a few ounces of urine at a time so embarrassing leaks in my protection are few and far between unless I try and go too long between diaper changes. It took a long time for me to accept it all but I've learned to deal with it and managing it has become second nature to the point I seldom give it much thought.

The spasms are the same for me but not all the time just most and the painfully full usually when it does happen is at night if it does happen and wakes me up in the middle of the night. I don't tend to leak except when I do it's around the leg gather part of the underwear/ pull up as the tend to becomes loose if you know what I mean.

[TOM 23]

The "I'm painfully full, I wish it would just let go instead of hurting" thing is very familiar to me.

When I'm not on any medication, basically *any* amount in my bladder is painful. It's only recently that I've started to realize that this isn't "normal", that it's not this painful for most people. I guess I always figured most people were just really good at pressing on regardless of the pain.

The first draft of this post had a description of a frustrating/painful situation that I kept getting into, when I wasn't using medication and was wearing diapers full time. I figured it was TMI and removed it, but -- trust me, I do know how it feels to just feel like "Hello, body! You're wearing a diaper -- don't experience pain, just *go*! It's okay! Really!"

Have you considered a catheter, to keep your bladder empty all the time? They're pretty easy to learn how to put in. They also come with their own discomfort, but that discomfort may be more "predictable" for you.

Good luck, and keep us posted how things work out for you.

Have considered catheters but too painful as well as uti and don't trust myself if I did needed to go down this path I'd properly have to have a discussion with the specialist about a stent or something ( as meds didnt help as last option)as I would be too scared too do it but would I still have the spasms?

[TOM 23]

Joe, as Tom said "first go to the doctors and makes sure they can not help with the physical and mental issues that you need to address". Going totaly incon may seem to be a solution because of the OCD and other issues - but it is also the last thing you should do before checking deep into other options. I now have some control - not enough to trust but a lot better than when I went over 2 years with absolutely no feeling of wetting. I just could never judge how wet i was most of the time and learned I had to just time diaper changes. And not always successful at that. So aggressively go after the medical community and see what they can offer first. Papa

had seen 2 urologist since the injury stating nothing wrong with the bladder had cystosomy and urodynamic studies the 1st urologist who did the cystomosotomy said didnt know how my back/spinal injury impacted my bladder as the injury is near the bladder nerves and sent me to get urodynamic test done from the 2nd urologist and according to the G.P letter from him said he would folllow up after the 2nd urologist(but never did) and said he didn't think bladder rehabilitation(retraining?) wouldn't go too well for me because of my bipolar( something along those lines will check later) 2nd urologist siad nothing wrong and for retraining but was never contacted and tried going eveny 1 and a half like g.p said but felt it was making frequency etc worse.

As well as see a mental health nurse, psychologist, psychiatrist on a regular basis but I have issues talking about "the bladder" with any one incl my G.P. To the point she thought a continence nurse had contacted me after the tests in early 2011 and was surprised I wasn't so she referred me to one at my local hospital

[Inconinmiss]

I guess that I should count myself among the lucky. I have a bladder that can produce spasms that are quite painful. However, when a painful "urge" strikes and I'm not near a bathroom, I have no difficulty letting go and using my diaper for its intended purpose, and that always relieves the pain. Not being able to go when the need arises would be torture.