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Hi everyone -- I haven't posted in a while, because things have honestly been a bit of a slog since my last post here.

At the time I last posted, the 15 mg of Enablex was working *wonderfully*. If every day was like that, I wouldn't have a problem -- it would be beautiful. But that only lasted a short time -- a matter of a few days. Then my urologist switched me to Vesicare, and then after that to amitriptyline. While all of this was going on, I got a course of 12 treatments of PTNS (the thing where they stick an electrode in your ankle and stimulate your sacral nerve).

All of those things, combined, seemed to "help, a little". But here's my problem: I can't *practice* holding it, unless I can hold it, to begin with, and not be in an unmanageable amount of pain while doing so!

So, now I'm back on the Enablex, but at an even higher dose. You're only supposed to go up to 15 mg/day, but my urologist said it was okay if I went up to 22.5 mg. So I've been doing 22.5 mg since Monday, and I've been practicing like crazy this week. I figure, the Enablex might stop working after a few days again, I should make the most of whatever time I have when I can actually practice holding it.

So... this week has been hell. The Enablex hasn't been doing as much as it was for those awesome four days that happened several months ago, but it's been getting me up to the point where I *can* practice holding it. I haven't been letting myself go to the bathroom when I want to, so I've been spending large parts of every day in varying degrees of pain. No wetting -- the Enablex means I *can* hold it. But... ARGH.

How long does this last? I have this feeling that "normal" people, with "normal" childhoods, often have pretty hellish experiences in school where you have to ask permission to go to the bathroom, so they get this hell over with young. I'm 32 and I was homeschooled (and until now I haven't had the medication to make me even able to practice like this), and I'm playing catch-up now. So I guess I'm wondering... if I compress all that hell that "most people" go through when they're young, into a short period where the bladder stuff is what I'm pouring all of my focus into... how long will it take to get the equivalent change in my bladder to what most people spread out over the years of their time in school?

When should I start to see it get easier? And do I have to maintain the "every day is painful" thing during the weekend, or can I relax a bit on the weekend? Will relaxing for the weekend cause me to backslide?

Honestly bcca, I can't really give you any info on the med side of things, I have not gone that route yet, that is a last resort as all I have heard of are negative reactions and stories of them really not helping the issue, sometimes even making it worse! It is a constant battle for everyone to try to maintain some level of normalicy to life while having to fight urges and leaking, but it can be done, it just takes time and practice, and a lot of patience! Hang in there, and keep us informed of how things go for you, Puffy

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Puffy
BC, Canada
Fighting the "Bladder Battle" since 1995

Thanks for the reply Puffy :-)

I guess my question was intended to be less about medication and more about "practicing holding it" in general. My assumption is that the medication has gotten me to the point where I can "take it from here", and that the process I'm facing (denying myself the bathroom, spending hours in pain trying to hold it) is much the same as the process that most "normal people" face in school much earlier in their lives.

And, okay. I realize that probably most people here, whose bladder issues had a definite starting point, are coming at this from the perspective of already having gone through that "childhood bladder expansion hell", so they just need to get *back* to the point that they *were* at.

I still wish I had some kind of precedent to follow. :-P

Initial indications are, btw, that relaxing a bit on the weekends doesn't do significant damage to my long term progress. Yes, I think it did cause me to backslide a bit, but I think I retained better than half of the (small, but definite) progress I made over the last week. And I didn't completely relax on the weekend, either... but enough to let me regain a bit of my sanity. :-)

I have tried numerous bladder medications including enablex. I could not tolerate the side effects. It seemed like the meds either didn't work or caused severe constipation and dry mouth. I drank alot of water and pee'd more often to go with it. My doctor understood. I gave up on meds. Sugery is my only option.

I hope enablex works for you. Also I recommend pelvic floor exercises. Talk to your uro doc about how to do them correctly. They too combined with the medication may give you some extra time between bathroom trips.

The thing is, medications a temporary fix. What you determine as successful will grout the window a few days after you stop taking the med's. You may need surgical intervention or protection to help you out. You may have them do a spinal scan and to look for nerve damage affecting your bladder signals.

Ugh. That's a discouraging thought. You may be right. What I'm *hoping* is that if I practice a lot, if I practice SO MUCH that I get 1000% better, with the medication... then when I go off the medication, I will retain *some* of that, and end up at "only" say, 700% better than I was at first.

I know I will have to practice a lot more, and get up to a higher level of capacity, than I eventually want to end up at, because of that.

But you're saying you think *all* the progress I make will go away when I stop the medication? Has this happened to you?



My next appointment is in December -- until then I'm just supposed to hang with the Enablex and keep practicing. I'll try to keep the spinal scan in mind as something to ask him about.

This weekend has been up and down -- until Thursday I felt like I was doing great, then Friday night was lousy, Saturday wasn't much better, and Sunday and Monday have been "okay, but not up to the level I was at on Thursday". I think I backslid seriously on Friday, but I don't know what I did to cause it -- if I did anything!!

This stuff is hard!! :-/

I don't know about the medical side much.The dr. put me on tamsulosin but I still wet alot and are just uneasy without a diaper on but can't stop the meds because of the uti's.

Bcca, how are you doing? I hope you are a 1,000 percent better and wonder how things are going. I hope things continue to improve for you and you can escape the wrath of diapers. The other thing to be concerned about is what happens when the Medicine amunity drops off. If you regress with medication or if you stop the medication, what will happen with your control?

Hi lynn,

Thanks for checking in on me. :-) To be honest it's been mixed. I actually did get my capacity up to where I was rather impressed with myself -- never in my life have I thought of myself as someone who could hold that much!!

Other things cropped up in my life and I stopped being as serious about the discipline of "not going to the bathroom, even when I feel like I need to". It's hard, and it takes both physical and mental energy to do that. It's draining.

So my capacity got lower again. And then I started practicing more and it got a bit better.

And about that time my urologist and I decided to go ahead with Botox. So we did a Botox injection, and I stopped taking the Enablex.

The Botox made it so that I could no longer pee the usual way, using the usual set of muscles. If I sit down and use the set of muscles for having a bowel movement, then I can pee. But that means I can't use a urinal, I have to sit down. And my capacity actually went *down*, not *up*, when all of this happened... i.e. the Botox didn't quite make up for the loss of the Enablex.

Another thing I've been realizing is... the Enablex did a lot to quell the pain associated with a full bladder. When I was on the Enablex and I had a full bladder, holding it actually didn't bother me a whole lot. It was uncomfortable, sure, but it wasn't the kind of discomfort that grabs you by the neck and makes your world into a dark, unhappy place until you go to the bathroom.

With the Botox and no Enablex, I'm back to where "full bladder" means "really, really uncomfortable and NOT in the mood to practice holding it". So that seems a bit counterproductive. I don't know if the solution is just more self discipline, to practice holding it even though it really feels lousy. Self discipline only gets you so far... :-/


What does all this mean? I honestly don't know. I'm too close to it, right now. In a month or so maybe I can look back and make some sense out of it. I definitely don't think the Botox has been an unmixed blessing. And I've learned in retrospect that I should have appreciated the "pain lessening" qualities of the Enablex more than I perhaps did.

I don't know if I even have any specific questions to pose to you guys on this board -- I'm spitting out a bunch of data points just because, well, data points are good, right?

Thanks, and I hope you guys had a good new year. :-)

There should be no pain from holding your urine. The feeling of a full and fuller bladder yes, but pain no. That does not sound normal at all, and I would mention it to your doctor - the key might be there. And, I know this is going to sound counterproductive, but are you drinking enough water? I do get bladder pain holding my urine when my urine is highly concentrated from dehydration.

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"Cats' whiskers are so sensitive, they can find their way through the narrowest cracks of a broken heart"