www.incontinentsupport.org

I thought I had made a post on this topic but after looking I guess I didn't. I know I have talked my incontinence in other ares of this website, but have not addredded this topic.

I became incontinent in 1986 as a result of a dirt bike (motorcycle) accident. I have what is called a neurogenic bladder (urge incontinence)as the result of nerve damage to L4/5, & S1. In the beginning, I had a LOT of back issues with back pain and numness in my left leg, foot, and toes. After having back surgery my condition improved, and after about a year, the only remaining major issue was with my bladder. My leg, foot, and toes returned to normal, and my back for the most part does not bother me any more. I don't lift anything over 10 lbs, so my back does not have any strain. I learned the hard way NOT to do anything crazy like moving furniture, or anything really heavy. Sometime just carring a 10 lb bag of potatos can strain my back if I carry the bag for very long.

I can really related to many of the thing Sandy has posted in this forum, becauseI've been there and done it myself. I guess I was like a lot of people acceptance and managing the problem did not come easy at first. I was a slave to the bathroom in the beginning, and was not able to get around well with the numness I had in my left leg. Those were the tuff times. Looking back, I think the thing the helps me maybe the most was reading comments in forums like this. It was a GREAT help in knowing I was not alone in dealing with all the issues.

I'm not sure how long it took me to adjust, but eventuality, I found it was easier to move forward if I gave up being a bathroom slave since I was going to wet anyway. Right, wrong, or anything in between, I let myself go and didn't worry about using the bathroom. Once I made this adjustment is was like someone had lifted a heavy burden from my shoulders. The docs don't tell you this, but depending on your situation letting yourself go may be th best thing to move forward with your life. I know there are a lot of peole that don't agree with this, but I would content that those that don't agree do not have a bladder problem that is managing them and have become a slave to the bathroom.

At the moment, I'm unemployeed,....and like a lot of people I was layed off work. I'm collecting unemployment insurance, and the state pays for all my medical including diapers. Money is tight, but with out the state paying for my medical I would have no way of getting the meds I take (about $350 per month for just the meds), plus the cost of the diapers. With a little luck, I should be going back to work soon (I hope and pray) and life will return back to normal.......at least for me.

Not being employeed leaves me with a lot of time to do nothing so I spend some of my time reading and making posts to this forum.

I don't let my bladder problem hold me back any more. I think this is more of a mental issue of acceptance and the willingness to move forward with a handicap and everday is a new adventure.

I mentioned a bit about my condition in my intro thread, but I'll go into a bit more detail about the way it has affected me personally here for anyone who cares to read.

I have what my relatives lightly refer to as "the family curse". It is a degenerative nerve disorder that effects the bladder. As far as we have been able to tell is has been present in four generations of my family, following my mother's side. Several of my relatives have it, all to varying degrees. The condition typically starts between the ages of 12-14, right in the heart of puberty. It begins as sleep wetting and slowly progresses from there. Some of my relatives have gotten lucky and are just sleep wetters, some have daytime accidents if they are delayed in getting to the restroom, my cousin and I both have full-blown urinary incontinence and require protection 24/7.

For me it started with sleep wetting at age 14. I suppose I am lucky because my mother is also a sleep wetter, so she was prepared with protective supplies and knew what steps to take dealing with my issues from day 1. I was put in cloth diapers at night and we prayed that it wouldn't get any worse. That phase lasted for about a year, then I started having daytime accidents as well. At first it was just little leakages, sort-of like stress incontinence, but others in my family had seen this progression before and knew that once it had become a daytime issue that it was very likely to get worse. At this point I was taken to the doctors, the specialists, had all the lovely tests run, and got the same answer that everyone else had heard... "Sorry, but there isn't much we can do about it."

At first I had a really hard time accepting it, I spent two years basicly chained to the nearest restroom... going every waking hour. As the problem got worse I began having full-blown accidents in the daytme, and suffered the usual ridicule from my peers, the name calling, the jokes, etc. I began wearing pullups to school every day, that helped with the wet pants issue, but I was still running off to the bathroom once or twice hour just like before. At the end of my 11th grade year I was really fed up with the whole thing, so I tried wearing my nighttime cloth diapers during the day over summer. It took quite a bit of getting used to, but I really feel that it put me on the right track.

When school started back my Senior year I began using my money from my part-time job to order good disposable diapers from the internet. My mom was initially aganst the idea of me going to full diapers 24/7, but after a while she got used to it. I hate to say it, but the diapers gave me my life back. I didn't have to worry about always knowing where the nearest restroom was anymore. I could sit through a movie, or a football game, or go on a long road trip and not be interrupted every hour. It was truely a liberation, as I'm sure some of you others have discovered. From that point on I've never looked back, I have no regrets about my decision, I refuse to let my bladder control me any more.

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~~PuddleGuy

Notime your story is just like mine started with leaking then more nightime and now also daytime setbacks this all due to bph.I didn't even know it could cause incontinence which was really hard to deal with especially the stgma was the bad part.

It was August of 2000 when I developed a back ache. I just thought I must have over exerted or pulled something. However as the days passed my back got worse so I made an appointment with the clinic.

The quack doc that took a look at me said it was probably just a back strain and sent me the therapy. A week later I was getting worse, I really felt like crap. I returned to the same doctor and asked for a blood test or MRI or something more than just "looking" at me. He told me he couldn't just authorize testing as the insurance companies required a paper trail of progressive steps. I left his office vowing not to return.

Four days later I was hallucinating, had a raging fever and the pain was so severe I begged for someone to shoot me. My son called 911 and I was rushed to the hospital. I awoke in the infectious disease ward four days later with a life threatening staph infection. I remained there for the next ten days and had therapy for the next two months after being released.

At first my total lack of bladder control was attributed to the trauma that my body went through. This was followed by the thought that the staph had settled in my spine. Still there was speculation that the large amounts of anti-biotics that were pumped through my system could also have been a contributing factor. At any rate I still do not have bladder control and there doesn't seem to be any definite reason for it.

Its darn near certian..in my mind anyway.. that my incontience is caused by my neroupathy. I don't know for sure, but it seems to be the best explanaiton. it certianly fits the bill.

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"We cannot do great things. We can only do small things with great love" Mother Teresa

"THERE ARE FOUR LIGHTS!" - Captain Picard from Chain of Command, Part II

Hey Rob
Why is it you think it's a Neroupathy thing................Sandy

Well sandy, when i first saw the neurologist about the symtoms i was experinencing, dizziness, headaches, incontinence, tingling in my nerves, muscles twitching, and numbness in my feet, he said it might be neuropathy. He ran a battery of tests at that first appoitment testing my reflexes. The MRI according to him showed nothing abnormal. Neither the pineal gland cyst nor the nerve dengeneration in my neck would cause these symptoms. I asked him at the end, did you find anything that would explain my incontience. He said, well if you have neuropathy it could explain it.


Well.. last monday, he did the nerve conduction tests and the EMG, and sure enough, i do have neuropathy. I read up all about it on the internet, almost all my symptoms, including incontinence were listed there. So, it seems pretty definete that this is the cause.

Although, i did do some reading on my medications, and minocin can cause polyuria. But thats simply increased urination.. not loss of sphicter control, which is what ive experienced.

We are still waiting on the blood tests to find out what is causing it. Depending on the cause, the neuropathy (and thus the incontinence) may be reversible..yay..no more diapers.. But, most of the time, they can't solve it. My gut instinct is this is something ive had since childhood, since i do remember wetting accidents up to and thru age 12.. with wet spots on my underwear sproadically thrugout my teenage years.

Whats kinda scary is that some neuropathies, though this is rare, can be fatal. So, really in my mind, the pertinent question is not "will i get out of diapers?" rather the question is "Do i have the fatal form of neuropathy?"
It's almost certian its NOT fatal, and for sanity's sake im assuming i dont have something that serious unless otherwise told. But, some can be disabling.

My neurologist did say my neuropathy was mild. Whether he meant mild case or mild form i don't know.


When compared to all the other problems neruopathy can cause, and has caused, the vertigo, dizziness, etc, incontiennce is rather minor. It's easily managed with diapers..but the rest of the stuff, i really need to get control of.

There are over 100 types of neuropathy..and just as many causes.. and while the most common one is diabetes, I'm not diabetic...(thank god)..

Hope i answered your question!

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"We cannot do great things. We can only do small things with great love" Mother Teresa

"THERE ARE FOUR LIGHTS!" - Captain Picard from Chain of Command, Part II

I suffered lower back injuries from a car-semi accident in August of 1998. As a result of my injuries I suffered some nerve damage near the base of my spine which in turn left my bladder without any sensation or control. The nerve damage also caused permanent numbness on parts of my legs.

Hi all was again reading the posts on how we became incontinence as stated before mine is bph.This leads me to think we are like a big fan a big array of causes that lead to one point.

I wrote up this big long story about what happened to cause my issues, but it's probably just easier to say that I was involved in a rather serious street bike accident that left me in ICU for a week. When I left the hospital I was hardly mobile and really had no control over my bladder. They set me up with an ext cath and collection bag, but it kept leaking around the condom. Six "incidents" later and my roommate was pretty much demanding I find some better solution.

So my boyfriend did a bunch of research and brought home a bag of disposibles without bringing it up with me first, so I was pretty apprehensive about it. But I didn't have any other options, so I tried them and they worked a lot better (especially since I was having bedwetting issues too). And I didn't have to go through some of the husband/wife/partner acceptance stuff I've read on here that some of you had to deal with.

It's been two years since my crash and I'm basically totally dependent on diapers at this point. I've tried to go without them and I just have absolutely no warning anymore, and on campus I don't have an option.

Oh and I've tried detrol and ditropan (what my GP suggested) and it didn't make a difference.

I'm glad I found this forum though because it'll be nice to talk to people who know how irritating it is to not be able to get in a hot tub or pool, go to a gym, trying to find a more private bathroom at my college to change in, diapers still leaking at night and having your boyfriend waking up to be in a puddle, etc.