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Support for dealing with incontinence
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Do you have a definitive diagnosis for your incontinence?
Yes 37%  37%  [ 19 ]
No 63%  63%  [ 32 ]
Total votes : 51
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 Post subject: A simple question
PostPosted: Wed May 04, 2016 8:50 pm 
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Joined: Sat Apr 02, 2016 3:37 pm
Posts: 59
Everything I read says "Incontinence is a symptom, not a disease". And that appears true for a lot, probably the large majority, of the people here. But there seems to be a sizable number of us that do not have a definitive cause to point to and say "I am incontinent because of X". I'm curious as to how many of us don't have a definitive cause. Do you think that made it more difficult to accept than having one would have?

For this question, I don't believe "overactive bladder" counts as something one can call a true diagnosis, unless it's followed by a "caused by ...." part. Otherwise it sounds like an ICD9 code created to describe the symptoms of incontinence when the underlying cause is unknown.

I ask because I think a lot of my frustration is I don't have a definitive cause, just a couple of guesses that haven't proven out (yet, hopefully). Without that cause the self-doubt, denial, the "Maybe it's all in my head", and "I'm just not trying hard enough" mentality that I've heard others express here as well is proving a difficult hurdle to overcome since there no "thing" to overcome (or accept) because "Incontinence is just a symptom".


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 Post subject: Re: A simple question
PostPosted: Thu May 05, 2016 7:01 am 
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Joined: Sun Oct 20, 2013 3:45 pm
Posts: 1943
Location: North Carolina - Raleigh area
Mike, good question but, actually, not so simple.

Often the "definitive diagnosis" itself can be a bit vague. In my case it is "nerve damage" due to spinal and pelvic trauma. It has been impossible to pin my doctors down any further than that, i.e., which specific nerves and why as there are many possible interactions. In some instances the original nerve damage caused secondary trauma which in turn affected the incontinence. Being double incontinent further complicates the diagnosis. The doctors usually are a bit relieved to learn that I just "manage it well."

--John


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 Post subject: Re: A simple question
PostPosted: Thu May 05, 2016 10:57 am 
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Joined: Wed Aug 19, 2015 11:49 am
Posts: 890
Location: Jacksonville Fl
Mike, I think you're actually on to something here. For me, my urologists had denied for years (decades actually) that I even was incontinent. It was only more recently in last few years that they consented that yes I had OAB. Which I too do not believe is an actual diagnosis- more like code, for "something is going wrong with your bladder but we don't know what". In fact, not one urologist could give me a real reason or explanation for why it was happening. Only by an indirect inference did we (mostly just me) come up with the most likely culprit being spinal shock and bruising from all those years ago.

Absolutely yes this played negatively with my mindset and made it extremely difficult cor me to accept I really was incontinent and truly did need diapers. Keep in mind though this was probably even worse for me as I was also fighting with the feeling I actually like wearing diapers, but according to the rest of society I shouldn't.

This had all kept me from accepting that I really do need (and yes like) to wear diapers until sometime around when I finally accepted I my own mind as well, and for truly legitimate reasons. While my exact and underlying cause is still not confirmed (and probably never will be), I am at least finally at peace with it.

Hopefully this will help you get past your own self doubts too. While you too may never find out truly why this is happening to you, just try to focus more on that it IS happening and what you need to do to move forward in your life.


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 Post subject: Re: A simple question
PostPosted: Thu May 05, 2016 4:05 pm 
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Joined: Sat May 03, 2014 8:08 pm
Posts: 480
Location: York, Maine
Doctors call my case a " complex case " A little over two years ago now I began to notice that I was going to the bathroom a lot. I started keeping track of it and it was a dozen times a day. I was in the middle of a very stressful period of time in my life and I had a nervous breakdown. I had a follow up with my primary care doctor after I was hospitalized for it. We talked about what was going on and I mentioned that I was having urinary issues. He sent me to the first of 5 urologist's and I have had a myriad of tests: cystoscopies, urodynamics tests, rectal exams, MRI's, a surgery to correct an abnormal blood vessel on my spine which turned out to only be a shadow on the MRI making the whole surgery and months of worry and anxiety completely unnecessary. All the while symptoms were getting worse, I went to 15 times a day, then to 20, then 25, then sometimes 30. The leakage was and still is relatively light, it still always happens after I go to the bathroom. I'm able to hold it and make the toilet with only occasional pain and discomfort from a full bladder. But leak for up to 15-20 minutes after a bathroom visit, usually leak a bit until the next time I go to the toilet. I always felt damp, and wet spots showed through my underwear. I began wearing diapers 24/7 in early 2014. June of 2014 with the summer heat and stress building, the 3rd or 4th Anticholinergic medication dong absolutely nothing, I begged the urologist's office over the phone to do something.......they're only solution was to go to the ER and have a Foley catheter inserted. The ER doc knew my wife as they had worked together previously (she's an ER nurse) he let her put my catheter in in the hospital. They sent me home with the foley in and for the first time in more than a week, I slept through the night. Two days later had an emergent follow up with urology and they wrote a prescription for Foley catheters. I've now been to 13 doctors and haven't been able to pin any of them down to a diagnosis of any sort other than "complex case" I believe it is overactive bladder (OAB) and interstitial cystitis co-existing. But can't get anything official. I believe the worst part of this whole thing is not knowing. I truly feel let down by the medical community. I feel like I have had to fight for any small gain, mostly I feel like I take two steps forward and three back. I feel like nobody cares or wants to help.


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 Post subject: Re: A simple question
PostPosted: Thu May 05, 2016 4:52 pm 
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Joined: Mon Nov 09, 2015 12:23 am
Posts: 96
I don't think its very conclusive. I only recently got my doctors to take me seriously and saw a urologist, who said things seemed abnormal, but wasn't very specific. Between conversations with my GP and my therapist, after getting the timeline correct, they believe it has something to do with the medications I took and some symptoms are induced from things when I was much younger. Why it is happening, I have no idea. To recap, my symptoms are bladder leakage and OAB. I have no idea whether its my own doing or how to get rid of it. I do know I want to forgo medication regimens as they've done a fine enough job of screwing my body up enough to begin with.

So, a tl;dr would be "Yeah, we see these symptoms are real, and we think its because of x and x, but we don't know why its still an issue." Though I'm sure being an overweight smoker does not help my condition at all.

I totally get the "Is it my fault?", "its all in my head", "maybe I'm not trying hard enough" thing.


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 Post subject: Re: A simple question
PostPosted: Thu May 05, 2016 7:22 pm 
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Joined: Sat Sep 05, 2015 7:51 pm
Posts: 863
Location: Hampton Roads, Virginia
Solid question, when the VA diagnosed my incontinence they did so with a lot of "maybe's" and "likely that it was caused by" without actually committing to an answer. It was probably caused by the repetitive head trauma from the IED's, and is likely the reason why I piss myself like a toddler at inopportune moments. But definitive answers? Not bloody forthcoming, and it DOES make things worse. Hadn't considered that, but you're on to something.

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 Post subject: Re: A simple question
PostPosted: Fri May 06, 2016 3:43 am 
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Joined: Tue Apr 12, 2016 4:30 pm
Posts: 115
Location: FI
Interstitial Cystitis goes a long way in our family, but apparently I've been spared from that. However, I believe genes play a role (or rather, act out) in my toilet-dances :? . As I've told on the other forum pages, I have very sensitive kidneys and get the urge to urinate much faster than most guys my age. No prostate problems. That was the first thing the doctor at a student healthcare centre checked. She was not a urologist, but prescribed the medication and gave some advice regarding living with the issue. I've been better ever since, but of course the problem remains. I've grown to think of it as an inconvenient and annoying trait which I can control at least to some extent.

My diagnosis, if you can call that, and you probably can as I was given a prescription, and you don't get one without a diagnosis is something on the lines of "Frequent urination and quickly renewing/emerging need to urinate". So, OAB. Probably it has something to do with my medical history, abnormal or sensitive nerves of the bladder and also psychology. When you are worried whether you can find and reach a toilet in time, the stress is like a jinx, your bladder goes haywire.

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 Post subject: Re: A simple question
PostPosted: Fri May 06, 2016 12:32 pm 
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Joined: Thu Mar 12, 2015 10:24 pm
Posts: 118
I come from a medical family. It was drilled into me pretty early that a diagnosis should always be based on an identifiable pathology. It's a good rule, but doctors break it all the time - just think of every article you've ever read about over-presciption of antibiotics or painkillers. Mike's point about OAB holds for a lot of conditions - patients get a diagnosis, but not explanation about what causes it. For example, Sociologygeek has been quiet around here recently, but that guy has been on a real odyssey. Same for PB&J32. Same for many others, whose posts I'm less familiar with. I'm kind of shocked by the number of forum voters who do lack a definitive diagnosis - a whopping 67%. That's astonishing. I have no idea what to make of it.

I received a clear explanation. My urologist did a rectal exam and diagnosed me with chronic, nonbacterial prostatitis. I'm allergic to flowmax. I've tried bladder meds, but I find the side effects are more noticeable than the main effect.

Noe


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 Post subject: Re: A simple question
PostPosted: Fri May 06, 2016 9:15 pm 
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Joined: Sat Apr 02, 2016 3:37 pm
Posts: 59
Noe wrote:
I'm kind of shocked by the number of forum voters who do lack a definitive diagnosis - a whopping 67%. That's astonishing. I have no idea what to make of it.
Noe


I have to agree. I thought the ratio would be the other way around.

For me, at least emotionally, I think a response of "Gee you caught the incontinence. That's too bad. Wanna try pills or pads?" would be better than "No abnormalities found".


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 Post subject: Re: A simple question
PostPosted: Sat May 07, 2016 12:09 am 
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Joined: Sat Sep 05, 2015 7:51 pm
Posts: 863
Location: Hampton Roads, Virginia
Noe, I got that diagnosis too... chronic prostatitis (the one where they don't know the cause) in addition to the OAB and the general "we don't have a clue" response.

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When you arise in the morning, think of what a precious privilege it is to be alive - to breathe, to think, to enjoy, to love.

Marcus Aurelius


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