www.incontinentsupport.org

I've noticed since having these problems and coming to rely on diapers at night and pull ups in the day that the use of these products is almost universally never recommended by any of the websites or even doctors. My doctor even said that managing this at night with diapers is fine temporarily but the goal should be to stop relying on them. MANY of the websites don't even mention diapers for bedwetting. They go on and on about behavioral mods, alarms and gadgets and drugs, but don't even suggest diapers. Some make quick mention of it.

From what I've read, including peer reviewed urology journals, the VAST majority of people quit their meds due to either side effects of unsatisfactory results or a combination of both. Yet almost all of the bedwetting and OAB articles, blogs, etc make it sound like meds just simply work. Meds with kegels and behavior mods work great. I've seen article after article saying here's the treatment for bedwetting and no mention of what to do if you're one of the 70+% of people who quit the drugs. Why?

The aversion to diapers but the medical establishment certainly doesn't help with the stigma for those of us relying on them. I totally get that doctors would prefer to treat and cure if possible but why do they seem so unwilling to accept the reality that most of the drugs are junk and diapers offer good practical management? I've seen on other forums people post that their doctor had extremely negative reactions to them wearing diapers. What's up with that? I don't get why doctors wouldn't want to educate patients these products are not only available but also quite helpful in getting people back to a sense of normalcy. I hate wearing diapers to bed, but it beats waking up every night to clean up, get towels to sleep on and then do a huge pile of laundry every morning. For folks with significant day wetting for whom meds aren't cutting it, the same benefits apply. It seems like doctors don't want us to use diapers but also won't acknowledge that their treatments fail so often. What do they expect us to do while trying treatments or after treatments fail, just piss ourselves?

Mike,

You are absolutely correct. The medical community definitely is averse to adults wearing diapers. Diapers are considered to be the last and least desired option for urinary incontinence. Your urologist probably considers your wearing a diaper to be his personal failure - he has not been able to successfully "cure" you. When I tried to educate one nurse - a pelvic rehabilitation therapist - she responded "I spend my time trying to get people out of these." She had little interest, but was better than most. Some medical practitioners also may be concerned that, when many people wear a diaper for any substantial length of time, they become more dependent on using the diaper and may become less responsive to other treatments, such as medications.

Re bedwetting web sites, most are honest and are just selling products designed to keep you from having to wear diapers. Some are genuinely concerned that, if you wear a diaper to bed, it will be easier to just give in and use it. Some also are concerned that a diaper could get in the way when you wake up (to your alarm) and rush to the toilet, and contribute to having an accident.

Most doctors and nurses cannot inform you knowledgeably about using diapers to manage incontinence because they simply know very little about them and are not qualified to offer advice. They are most familiar with cheap institutional diapers used for only a very temporary period. A couple of doctors have told me that they just did not receive any training along these lines in medical school, although they were open to learning more.

--John

My pelvic floor therapist did not dispute my use of diapers to manage my incontinence; she understood that my urinary sphincterotomy made them necessary. She was concerned, however, about my weight. She remarked that working on me was like being back in cadaver lab. Dietary and medication management are the most difficult challenges for folks with gastroparesis. I explained that, when I do not get my diet and medications working together, a bowel accident becomes inevitable. She understood, if reluctantly. She did say that most of her patients used diapers, even though her personal goal was to wean them away from protection.

interesting replies. I find the disconnect kind of fascinating. I'm trying to come to terms with needing diapers, a decision that I did NOT make lightly and feeling like the medical community works to undermine that choice is frustrating.

To be clear, my doctor didn't say to stop wearing them or anything. In fact on my first visit he told me to continue "padding up" as he put it until we found something that worked. Once we moved from just exercises to trying drugs though his attitude on diapers kind of changed. He said both that the goal of treatment was to improve quality of live but also said he wanted to get me out of diapers as they're not a good long term solution. I was totally on board with that line of thinking....Until the side effects started (pretty much immediately) and I confirmed the high drop out rates online. Still, thinking getting out of diapers was a worthy goal I tried other meds.

I have a lousy high deductible health plan so I pay full price out of pocket. These drugs are EXPENSIVE. $330 out of pocket for a month of myrbretriq. AND I am buying diapers too. That's another factor. I'd eat that cost if it was 100% effective. But no way am I paying that to still wet the bed 3-5 nights a week and still have daytime urgency and leaks. Yes, it DID reduce the bedwetting (a bit) and yes it DID decrease daytime urges and leaks....but for $300+ a month I need leaks and bedwetting STOPPED. I really don't see much difference between daytime leaking of 1 time a day or 8 times a day. Either way I need to wear something because I don't know when that 1 time will be. Same with bedwetting. What really is the practical difference between wetting the bed 7 nights a week or 3-5? Still need heavy diapers. Almost $400 a month between meds and diapers and wondering why I bother. $330 of that could be going to my kid's college fund or some other worthy expense. But the doc thinks diapers aren't a solution.

I want to have an open conversation with my doctor Monday and ask him what he thinks my goals should be since meds won't actually stop this and a minor to moderate reduction with side effects is NOT satisfactory to me. I have to tell him I don't want to keep throwing darts at a dartboard on my dime. He asked my on my second appointment what my goals were with treatment and I told him to resume totally normal urinary function. He told me I had to be more realistic and that treatments were effective in reducing symptoms. WTF is the point of reducing symptoms while being told diapers and pads aren't a solution? Am I supposed to stop wearing and deal with accidents but just be thankful that I only piss myself in front of people once in a while instead of 5 times a day?

this whole thing has all been so strange to me. The problem itself, the lack of a definitive cause, the junk pills, the management, the struggle. ugh.


/vent off.

You just hit the nail on the head... and this is what i went through. Pelvic relaxaiton therapy got me dry for 4 years..but then it st arted up again. Without doing things every single day, i can't maintiain control. With my ADHD, it is hard for me to remember to do things every day. And lets not forget that its a treatement not a cure.. ive had situations where i got myself dry.. and a bit of constipation set things off and bam..back to wetting.. So, im padding up and living life...

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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

In general, doctors tend to reflect the same overall/combined attitude of their patients. Most "normal" people still have the incorrect mentality that adults should not wear diapers for any reason. This includes even those who actually do wear them but desperately want to get out of them at any cost.

And yes, I've also seen professional medical articles that say there is no effective way to manage incontinence other than with catheters. Stupid... I know.

Interesting. Cathing would be a very last resort for me. Having had cystoscopies and urodynamics I can say I never want to stick anything up there again unless I absolutely have to. As much as I don't like wearing diapers and pullups, I'd prefer it over catheters any day.

A lot of us share the frustration of not knowing the cause. It still bothers me a lot. A while ago, I asked about how many had a real diagnosis for the cause of their issues here:

viewtopic.php?f=4&t=2262

The results astounded me. I was sure the ratios were going to be much closer to reversed based on what I had read here and elsewhere. Maybe those with a diagnosis are better able to deal with the onset, and don't hang out here. I don't know. But what I was able to glean from that question is that there are a decent number of us out there that don't have an answer, and may never get one, and share the same frustrations. And I, at least, found some consolation in knowing that I was not alone and that it probably wasn't all in my head.

I was initially satisfied with "OAB". At least it had a name. But that didn't last long. WHY do I have OAB? What causes OAB? Will likely never know.

I just saw a GP for my problems. She seemed a little baffled that I've never had proper examination or tests, and sent me for ultrasound in a few weeks time. We'll see. Only one issue: bladder has to be full for ultrasound to work reliably. Nice.

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