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Hi folks. :-) I posted here a few months ago after a failed attempt with Ditropan. I was really cheered up by everyone's responses -- THANK YOU!

I now know a bit more -- since then I've had an ultrasound (kidney plus bladder), cystoscopy, and a urodynamics test. And I'm now taking Enablex, 7.5 mg per day.

Unlike the Ditropan, the Enablex is actually doing something discernible. It lets me stay a lot longer at the "geez, I really have to go!" stage, before I get to the "okay, I have 30 seconds, TOPS" stage. So that's progress. But it's a double edged sword, because what that really means is that I am now capable of being far more uncomfortable, for far longer! I'm not sure what to do with that.

Here's what I'm wrestling with. This is hard to write about, because it kind of cuts to the center of whether I can look in the mirror and see an adult looking back at me. I feel like there was a rite of passage into male adulthood that I never had. All these people I see around me who don't have to go very often, and, even when they do have to go, they can easily put it off for a few hours without any real pain or stress. (At least outwardly.) There are an uncountable number of memories like this, but one of the ones that stings the most is when I was 19 and I very nearly prevented the group of people I was with from getting into a concert before the doors closed, because I *had to* go to the bathroom first. I had to; there was no other option. And yes, I had gone before leaving the house. Nobody else in the group had to go.

I've been sidestepping the issue for most of my adult life by using diapers. And I can keep on sidestepping it if I choose to do that. But I still feel like "that one kid. You know, THAT one."

My worry is that I will get *somewhat* better at holding it, but that I won't be able to really get enough confidence in it so that I'll feel comfortable, say, going to a concert without a diaper. That would take a *lot* of guts for me, right now. Even if there's a 90% chance that I would be fine, there's still that 10% chance that I wouldn't be. With a diaper I have a 100% chance of being A-OK with nothing to worry about.

Same thing for at night. How do I get to the point where I can sleep at a friend's house, or -- God willing, if I were to find a partner -- with someone else in the same bed? Even if I had been dry at night for the preceding six months, how could I be *certain*?

I'm seeing the urologist again tomorrow. They're going to teach me how to do pelvic floor exercises. I'm dubious that that will help; I'm going to ask if they'd mind upping the Enablex to 15 mg per day.

It's not just my bladder, too. If I'm having a bad day, my *kidneys* are putting out so much volume per hour that even if I got all the bladder stuff 100% perfect, I would still be going to the bathroom very urgently and frequently. The urologist sort of brushed me off when I brought that up; he told me to keep track of what I'd eaten and drank when that happens, and look for patterns. So I've been doing that, but haven't spotted any patterns so far. Has anyone else dealt with this?

If nobody has anything clear-cut to say to this, that's fine. I needed to get it off my chest, and this feels like a safe environment to do that in. Thanks... and I hope everybody's enjoying their evening. :-)

I'm very glad to hear that the Enablex is helping. The pelvic muscle exercises are also likely to help.

Your dilemma now is discovering how much confidence you can have in your improved bladder control. To some extent, over time, you will discover how reliable your bladder control is becoming and how much you can trust it. I developed severe urge incontinence after a surgical misadventure when I was 14 years old and had to be in diapers 24/7 for a couple of years. However, I became a fanatic about doing the pelvic floor exercises and got to the point where I could generally go without a daytime diaper by the time I went away to university. However, my nighttime control was never reliable, and I contined to wear a diaper in the daytime in special situations that were likely to produce an accident, such as long car trips, concerts, movies and when writing exams. (Unfortunately, the incontinence got worse again when I was in my forties; and after a few embarrassing public accidents, I went back to wearing diapers full time about 25 years ago.)

So I think you're going to take things gradually and see how far you can go. The secret is to be realistic about how much control you have. Don't use diapers as a needless crutch, but don't court disaster by not wearing a diaper in a situation where there is a genuine likelihood of having an accident. And if anxiety about having an accident keeps you from enjoying your new better control as much as you should, don't hesitate to see a psychologist or psychiatrist who is an expert in helping people deal with anxipety.

Hi Inconinmiss. :-) Thanks for the response!!



The odd thing about the Enablex is that it seems to have just replaced the anxiety about having an accident, with anxiety about being subjected to excruciating pain that lasts until I'm next in the vicinity of a bathroom. And I'm not convinced that's *really* any better.

What does one do about the physical discomfort? And the fear of possible intense discomfort if you choose to go into a situation without a diaper?

I'm not sure what a good working definition of "needless crutch" is, that takes all of that into account.

I'm also not sure what is *sustainable* -- I can be heroic on one particular day, but then that saps my ability to go diaper-less as much the next day.

Thank you for your description of your history, too. It's interesting to hear that the pelvic floor exercises helped you so much. I had the appointment to be shown how to do them this morning, and I'll give them a shot.

OK, new data.

1. Even though the Enablex is supposed to last for 24 hours, the reality seems to be that after 16 hours, it's exactly as if there isn't any of it in my system at all.

2. 15 mg of Enablex (up from 7.5), taken in the morning, makes the daytime WONDERFUL. Now that I've seen what the higher dose can do, I really don't want to go back to anything lower.

To expand a bit on #2, I've actually been able to practice delaying urination over the past two days, without an incapacitating amount of pain. This is exactly where I want to be -- it's giving me the tools I need to practice holding it longer and to try to stretch my bladder, in a way that I haven't ever been able to do before.

However... if I take it in the morning, then by the time bedtime comes I pretty much have to wear a diaper to bed. Yesterday I delayed taking the pill until 1 PM, and I tried (with much trepidation) sleeping with no diaper. I was encouraged by how well that went, and I would like to experiment more with sleeping without a diaper, but I'm really paying for it this morning, because it's 7 AM and my body is screaming for more Enablex, and I'm figuring I should really wait until at least, say, 10 or 11 AM.

15 mg is the maximum they're allowed to prescribe, I think. So part of me wants to try to get that as two 7.5 mg pills every day, and space them out by 12 hours. But I've been liking the 15 mg so much that I'm worried about doing anything that would result in a lower level of it in my bloodstream than what I've been getting during the days from 15 mg.

Another part of me thinks I should stick with the 15 mg in the mornings, and diapers at night, for a while. I will ask the urologist for his opinion when I next see him, too.

I've been doing the exercises, but so far haven't noticed much of a change.

Hmmmmm.

The wild success at the 15 mg dosage of Enablex didn't last -- I had three or four *really* good days, during which I think I finally realized, for the first time in my life, what "other people's" bladders feel like. And then the wonderful effects stopped, and it reverted back to more or less exactly the way it had been at 7.5 mg.

For those four days... I experienced a level of freedom that up until now I had associated only with diapers... but I experienced very close to that same level of freedom without them. It was kind of eye-opening.

We're going to try Vesicare, which is another in the same class of drugs as Enablex. If that doesn't work, or if it doesn't work long term, they're talking about Interstim implants.

If it gets to that point, where they're considering the implants... I'm not sure I want to be a cyborg. I can think of arguments both ways. Hopefully it doesn't get to that point. Has anyone else had Interstim implants discussed with them? What was your feeling about them?

Bcca,

I hope that you have better luck with the next drug that you try.

After trying all the drugs on the market for my urge incontinence and finding that none of,them had much effect, I was also offered the Interstim implant. I turned down the offer. I've become so used to wearing a diaper, and high-quality modern disposables work so well that the idea of having an electrode implanted in my spine seemed like it would be more risk and more hassle than it was worth. On the other hand, for someone who cannot reconcile himself to wearing a diaper, maybe the weights given to the risk and hassle issues would be different.

It's not so much that I "can't reconcile myself" to it... heck, I've been wearing diapers (to one degree or another) most of my adult life. They make so many problems just "go away".

The way I put it to my doctor (who was the one who gave me the Ditropan originally, and also the referral to the urologist) was that I've always been kind of an iconoclast, and I used to be a lot more willing to say "hey, you have your way of going to the bathroom, I have mine. My way is just as good, and it works better for me." But recently I've been sort of more willing to accept that society has norms, and maybe not all of them are bad ones to strive for. If possible, of course.

Thanks for the perspective on the implants. I get kind of an oogy "this is invasive" feeling thinking about them, too. Which is the same way I feel about Foley catheters. I happen to like my body, and sticking things into it that weren't meant to go into it just doesn't seem optimal.

Nothing really earth-shattering to report on the Vesicare yet. It's the kind of thing that builds up in your bloodstream over time, so I waited a week before deciding that the 5 mg/day dosage wasn't cutting it. Today was my first day on the 10 mg/day dosage. In another week, *that* will have built up in my bloodstream enough that I'll be able to say whether the higher dose did anything.

I'm still doing the pelvic floor exercises, although when they bumped me up to 10 repetitions for 10 seconds each, resting 10 seconds in between, I started slacking off a bit in terms of how many times per day I actually remembered to do them. It stopped being something I could just do "when I was thinking about it", because the whole ritual takes about three minutes each time and it's edging up into "onerous" territory for me. I should probably buckle down on that.

I wanted to also respond to this comment from earlier -- my first response to it (while I was on the Enablex at 7.5 mg/day) was that I was confused as to a good working definition of "needless crutch".

During those four *good* days on the 15 mg/day of Enablex, it suddenly got crystal clear to me. Yes, it *is* possible to be at a point where the "without diapers" scenario is good enough that wearing a diaper would just be a needless crutch. I felt great; I could put off going to the bathroom for an hour, two hours, it didn't much matter. I knew I wasn't going to wet, and I wasn't in any amount of pain that I couldn't cope with easily, and it felt just fine.

If I can find the right medication to get me back to that point and *stay* there, I will TOTALLY have a good operational definition of when they'd be a crutch and when they would just make sense. Those four days taught me a lot about what a "normal person's bladder" feels like when it's full.

Thanks, to both you and everyone else who's given me more food for thought!!