www.incontinentsupport.org

I'm a new member but I've been visiting the site periodically for a while. . so first off. . hi all!

To the theme of the thread:

I have intermitant urge incontinence most likely do to ongoing nerve impingment from an old lower back/pelvic injury, but no definative diagnosis. (Unless 'ideopathic' counts as a diagnosis. . but that's another thread.)

My inco is highly variable in frequency and severity. I can have weeks, even months without issue, or only with bedwetting. . .but I can also have days, weeks, even multiple consecutive months of daily issues with varying degrees of urgency, frequency and urge accidents. This can be as little as a bit of sudden urgency, the kind of 'I didn't feel like I needed to pee at all a minute ago' to 'I need to pee pretty badly' like a switch was thrown, or as bad as nearly constant contractions of my bladder to the point that I wet almost continously and which can be very painful both do the the severity of the contraction and the fact that it can go on clinched like that so long it's basically a cramp, and of course everything in between.

The variable and perhaps 'weird' nature of my inco is the most frustrating part. Sure, it's great to have those periods when I'm really not even thinking about it and essencially am continent. . . but then when it comes again it's like starting all over in some small way with the embarrassment and the depression and anxiety of first becomming inco. I sort of ride a roller coaster with it. . . never quite getting fully adjusted before it's over again.

Anyway. . hope that wasn't too much. . just thought I'd toss out another perspective on the topic (and dare I hope) see if anyone else has experienced something like it.

Hey Dylan, welcome aboard the board! I also suffer from urge as well, but mine is like a 5 alarm firebell, when it goes off I need to do something about it NOW... the trick is not getting side tracked or so busy I push that limit, but wear what I need to just in case, like many on here. Some days you win, others it is not so easy! Puffy

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Puffy
BC, Canada
Fighting the "Bladder Battle" since 1995

Welcome, Dylan,
That sounds like a tough go.....anything that's not consistent or predictable is very hard to deal with!

Hi Dylan - I can really relate to your problem. You describe my situation completely. I can be as dry as normal for weeks and then WAMM, I'm hit with a wet cycle that can catch me completely off guard. I've had this now for 30 years. There are times that it seems to be worse and others where it seems to go away. I've tried to relate it to something that I do/eat/stress/whatever and there hasn't been anything that relates. I hate wearing protection when I am in complete control just on the off chance that something will happen, but when I'm wet I need protection all the time. Sometimes I wish my body would just make up its mind. Either be continent or incontinent, at this point I really don't care, but just be consistent. I am so over the fear of wetting myself in public. If it happens, it happens, but it sure isn't fun. It is especially hard on my wife because I can't sleep in bed without protection but sometimes I don't wear protection because I've been dry for several days and it seems silly to wear protection when not needed. But then a few days or weeks or even months later, I wake up wet and it all starts again. So I can sure relate to your problems Dylan. Wish I could offer some help, but I'm looking for answers myself and short of living in diapers 24/7, I don''t know what else to do.

Hi Dylan

I have had very similar problems since I was 9 years old I am now 66 and this went on like that untill about 10 years ago. All my problems are nerve damage at c-3 then about 10 years ago I went for bedwetting to full blown 24/7 developed weekness on my left side after a couple of years chencking with dr they found a blood clot in my spinal col at c-3 it damaged my spinal column causing the weakness on my left side to damaging nerves that controlled my bladder. About 2 years ago I developed retention to the point where my bladder would not compress any longer. Now I have a foley catheter which seem to working good for me.

When having a bad spell, if you stop holding and stick with diapers, your control may not come back. BUT the pain and spasms may stops well. It may be worth looking into 24/7 protection if you feel better and no pain.

Thanks to everyone for the replies, and especially to those of you who report similar experiences. . . I know people say this here all the time, but my issues are so odd, especially with the long spells of complete dryness, or (nearly) complete wetness, it's just really encourageing to hear that I'm not the only one with such a pattern.

To nerve damage: That rings a bell, since I have more or less chronic back pain at every level, at best it's annoying when I'm tired, at worst it's debilitating. All along I've noticed a relationship between the beginning of another wet cycle (for lack of a better term) and the amount of pain, but it's really inconsistent, and not really a better predictor that all the other things I've thought might cause it (also echoing someones experience) such as alcohol, foods, stress, you name it. . . though it does seem that any extra load: Pain, illness, stress ect are apt to start a problem.

Also echoing some other sentiments, it does seem that the worse it gets the worse it gets, that is if it gets bad enough, it's going to get better more slowly . . . but these are all only impressions. Variously I've had lots of ideas about causes and exacerbating factors, none of which is consistent enough to 'prove'.

I've seen several Drs for this (it began when i was 19, i'm nearly 36 now!) and been refered to several urologists, both while symptomatic and not. I've had the usual tests, plus seen several neurologists and a neurosurgeon. I do have some structural abnormalities in my spine at all levels, due to a combination of multiple traumas and the excessive wear created by having those injuries and the way they disturb everything from walking gate to the relationship of joints. However no Dr has ever admitted to anything like visible nerve impairment that would explain my incontinence. Now, I'm not really arrogant enough to second guess that many Dr's, on the other hand, they aren't certain why I have numbness and tingling in my legs and feet, burning or submerged in hot water sensations in the perinium and legs etc. I have however read enough to know that every one of these relates to a neurologic problem, they just can't find it.

Looks like I've run on again, but there is just so much to say. . .