www.incontinentsupport.org

No response is needed to this really. I think I just needed to get it off my chest.

I saw some speculation in a different thread that people tend to join the forums, find answers to their questions, and then drift off. I guess I drifted off ten years ago (2012-ish) but it was actually kind of due to getting discouraged/depressed with the whole process with the medical system! Not because I found the answers I needed.

I've written a couple of drafts of this post because my first couple of attempts sounded overly sentimental, like "oh for the good old days". So here's what I think I'm trying to say. At the time I joined in 2011 I was sort of going through a shift in how I thought about my incontinence. Before 2011 I used to think it was just fine. I couldn't hold pee, I wore diapers, they made everything fine. Problem? What problem?

I guess the problem is that nobody exists in a vacuum. I think I must have looked "weird" to the outside world. I didn't know I looked all that weird. I thought the diapers were keeping my pants dry and I was mostly acting normal otherwise. But I started to pick up on stuff. At the time I was also very concerned with progressing in my career, and it seemed to me that the diapers were one thing that just made me not really fit the mold. I don't think I ever faced any blatant or outright discrimination. But "how someone views you on a gut level" can be a fickle, hard-to-pin-down thing. And I made a decision in 2011. I decided I was going to pursue any and all kinds of medical treatment available to me. And I did. Nothing really worked. Tests were inconclusive. Drugs, treatments, physical therapy didn't have lasting benefit. And then the Botox which messed me up so much it took me two years to recover from it. And at that point I'd lost my motivation for the whole thing and I was just ready for the Botox to be over so I could get on with my life.

There's so much embarrassment now, though. There didn't used to be this much embarrassment. I grew up not being able to delay urination for more than a few minutes, at least not reliably. Before 2011, the diapers were actually making me less embarrassed, not more, because hey at least my pants were staying dry. But somehow now it's a lot easier to feel like it's my fault for not being tough enough or macho enough. Around 2011 I made all these promises to myself. Like... shouldn't I be strong enough to overcome this. Shouldn't I be able to practice delaying urination for longer and longer times (despite the fact that delaying urination is the one thing I've never been able to do).

It's a lot tougher now to just "wear diapers and don't worry about it". I avoid most social situations now. I'm embarrassed to go to them with a diaper and a backpack, but I'm also embarrassed and scared to go without. I don't even know if I want to open the whole can of worms of what to do at work. That's a whole other thing in itself. I haven't worn diapers at work since 2011. I'm trying not to get into too much TMI here, but I will say that my coping mechanisms were never that great to begin with, but they've been working even less well lately.

I dunno. Life hasn't been all bad over the past ten years. Career in particular has actually been a bright spot. And really lots of things are better now than they were ten years ago. But bladder-wise? Worse. Social/isolation wise, due to bladder? Way worse. I think the isolation may actually be the worst of them all.

I don't know if I'm really trying to ask any specific question. If I were giving advice to myself, I would tell myself "Self: You've done an awesome job over the past ten years at getting your career into shape. Now it's time to spend some of that career capital, start wearing diapers at work again, and at least get to where the bladder stuff isn't a constant, everyday problem at the office." -- But that's scary!! In so many different ways!

Thank you so much to anyone who got this far. Thank you, so very much.

bcca, you have done well, except for social isolation. All of us can relate to what you have experienced. Coping mechanisms are different for each of us.

It appears that you already have a general plan for where you need to go next. And yes, it can be scary.

Good luck and best wishes.

--John
(double incontinent)

bcca,

Add my best wishes and admiration. You have developed the skill set necessary to resume social and work activities. You know what to do, and you are doing it. Good luck on your continued success.

This whole thing has been such a rollercoaster, spanning decades!!

Before 2011 I really don't think I understood how different my bladder actually was from most people's. When someone else mentioned they needed a bathroom, I think I always just assumed that their need was as urgent, scary, and stressful for them as it would have been for me. Obviously I knew most people didn't wear diapers. But I really didn't know that most people can actually hold it for quite a long time after their bladder is full, and really not actually be all that stressed or embarrassed about it. If someone had told me that they didn't find having a full bladder stressful or scary, I wouldn't have believed them, I would have assumed they were just being macho. So diapers pre-2011 just seemed like... "the logical choice". I just didn't see anything embarrassing about the fact that I wore them.

2011-2020 I was now painfully aware how different I was from most people. I did all the medical stuff, the physical therapy, the exercises, the botox, the interstim, biofeedback, meds, all of it. I think I was largely in denial about how little lasting benefit I actually got from any of it. But I wanted so badly to "have made progress" that I just kept moving the goalposts until I could claim that I was doing ok without daytime diapers. I wasn't okay. I was a hermit, I starved myself for water, I was too embarrassed to do really much of anything. If I made plans around a certain degree of bathroom availability and then I ran into heavy traffic, or a locked bathroom somewhere, or a change in plans -- I freaked out. I was not okay. But I kept going, I kept at it, because I "wasn't wearing diapers!" and that was the thing that seemed the most important to me.

Whether "not wearing diapers" helped with my career or not during this time frame, I don't know. It seemed to me at the time that it did. And that was one of the reasons I stuck with it so stubbornly. But I can't really know objectively. I wanted badly to be "normal" and maybe just wanting that so badly caused me to make a better impression in ways I wasn't aware of.

2020-2021 I never left my house because of the pandemic and so obviously I was fine with bladder stuff. But I also got out of practice with what little ability to delay urination I had, which wasn't much to begin with. I basically reverted back to pre-2011 levels.

2021-2022 Gradually back to the physical office. I was trying to go to the bathroom often enough that I wouldn't wet my pants, but I did wet in several situations anyway. Thankfully none of them turned out to be obvious to coworkers, but it was still very scary and embarrassing because I didn't know how much was going to come out. And I didn't want to call attention to my crotch by trying to look. I suspect I was also calling unwanted attention to myself because of the frequency of my bathroom trips. Also during this same time period, outside of a work context, if I had to stand in line for anything, I often either overestimated the speed of the line or overestimated my own ability to hold it until I got to the front.

March 2022 I was kind of "at the end of my rope" and I posted here for the first time in 10+ years. Reading now what I wrote then, I know I was miserable then. I couldn't handle it anymore. Urine is something we all have to do many times a day, and at the time I posted a year ago I just had absolutely no way of dealing with it in a way that wasn't terrifying and embarrassing, every day. I was spending every single day being upset and scared and stressed about bladder stuff.

The decision last March to go back to diapers wasn't without its embarrassing aspects, too. It meant finally facing the fact that I would have to "give up". I really was hoping that I would be able, through the magic of modern medicine, to join the ranks of men who are able to confidently go about their day every day, and when their bladders are full they hold it (sometimes for hours) until they find a toilet. I admire men like that. I admire the men you see in underwear ads who you just look at them and you know they could keep those underpants dry for hours if they had to. That's a kind of masculine that I've never been and never really been able to conceptualize it in my head how it would even feel if my body could do that. I wish I could. I wish I could just know what it's like.

On the other hand... going back to diapers last March also just really "gave me my life back". Urine is a thing I just don't ever have to get worried about, ever. I pee when I need to, I change when it's convenient. This all happens X number of times a day, but the number of times a day when I get stressed about it is zero. Heavy traffic? No problem. Unexpected change in plans? No problem. Hanging out with coworkers or friends? Going out to eat? Seeing a movie? No problem. Working part of each week in the physical office? No problem. Sometimes I catch myself thinking about how mindboggling it all is, that I can be doing all these activities and not have to worry about my bladder. It's just such a huge change vs the previous decade.

Has it hurt my career yet? Too early to tell, I think. I expect those kinds of things are never explicit, they're just going to come (if they do come) in the form of "not getting promoted" or "not getting interesting work assigned to me". So we'll see.

I think I would call this a success story.

--John
(double incontinent)

It reads like you've taken every reasonable test and potential solution. There's no shame in that! I am retired now but I have to say that needing diapers is not any easier in your mid 60s to accept. Due to diabetes nerve damage, I too have a problem "holding it". In my 3rd year now, and I am still learning acceptance.
You have taken "control" of your situation. Kudos. It is "manageable". Consider yourself fortunate in knowing you don't also have BM related problems.
I'm in a funny mindset in that I used to do almost everything to sharpen my career skillsets etc. But now retired, I don't have a career anymore! As a result of that, it means I have more opportunity to help people/family and go out to sporting events. It's been an adjustment for me to "diaper up", to be prepared for the worst, just so I can go out and enjoy 4 hours of a public sporting event. I am U-IC and have risk of F-IC. Please don't deny yourself of opportunities to "live life", which is why we work/worked.

Being incontinent does not mean people stop "living". Do get out and enjoy life!

Your success is welcome here indeed. Most of us have been in your shoes, at your incontinence address, which makes your account so valuable. My diapers give me freedom that I would not have had with anything else. Botox, pelvic floor physical therapy and assorted drugs all have their place. However, for those of us for whom these have not worked, diapers are logical and necessary. At my most recent urologist appointment, he complimented me on my incontinence coping skills. I'm still preening. He said that many of the patients he sees because of their incontinence have become recluses, home bound, unable to function in public. Too often the stigma is internal with us, not imposed so much by society. When we overcome it, when it no longer imprisons us, we can simply accept our diapers as the clothing we need, and get on with the other challenges of living.

My situation is quite different than yours, but in some ways is very familiar.

I agree, it sounds like you have tried everything they have offered. I thought of a couple things to suggest...but you had tried them as well.

Going to diapers gave me a lot of my life back even if I didn't need them many days. The confidence of having a backup plan let me get back to activities. Over time, new treatments arrived and my disease changed; I went months with no incontinence at all. Right now I am doing fairly well with the occasional bad day. I go through periods when I am in underwear with a washable pad or even regular underwear. Most of the time I am in pull-ups...but sometimes I have to use tab diapers at night.

Here is my takeaway from your story: You have tried really hard. You have done everything. Wearing diapers for you is not "wimping out" but dealing with the reality of your situation. Just do it, use the diapers. Try the modern high-end pull-up underwear, it might work for you as it does for me...not the grocery-store crap but the high-end Abena, Tena, Northshore, etc. They feel less "diapery".

But just deal with it. Don't let it be in charge of you. Take finding the right products for you on as a challenge.

Bcca,

I can relate to some of what you related in your post. I've pretty much given up on medical treatment, but recently the episodes increased to the point where for multiple days in a row, I barely made it to the toilet at all and most of my urine ended up in a diaper. So, I made the decision to see a urology PA. She recommended doing a urodynamics study to see if we can get at the root cause. She looked at the results from my urodynamics and concluded that I did have some overactive bladder tendencies, and put me on Ditropan XL. I had avoided medication in the past, because I felt that it did not do anything for me at all; I still had to wear diapers, so what was the point? But, this time around things are different. I am going to give this a shot, and give the mediciation a chance to work. It may not keep me completly dry, but I think I have definitely noticed a decrease in the amount of times I am wet during work. The output into each diaper is less. Which is helpful because some nights it has been so much I wondered if i was wearing enough protection.

I do sometimes get thoughts of embarassment, like why do I wear diapers when most men my age wear underwear? I don't know why, but I actually bought boxer briefs recently. I guess I just wanted to feel normal. I wanted to give myself a chance ant normlacy, and try going to the bathroom more often like my urologist suggested, and maybe this was all in my head.. and I didn't really need diapers.. and then things came to a crashing reality. I was not wearing a diaper, and the floodgates opened and I just stood there with a puddle on the floor. So much for wishful thinking, of being ok to wear underwear if i remembered to go to the bathroom so often.

Just remember.. its all another form of underwear. Underwear that happens to be disposable, absorbent and goes on differently that "normal" underwear. Underwear that can free you from having to worry about long bathroom lines.

Peace out!

Rob

_________________
"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