Incontinence Setbacks?

[CapBob]

All:

I'm about 4 months post RPP, and had a rough first month on the incontinence front, upwards of 5 pads a day, then improving to one, many days pretty much dry. Then about 3 weeks ago I began regressing to pretty much a constant low volume seepage. Most days one pad will handle it, but it's still pretty discouraging.

Any ideas, or similar experience? Before I improved the first time my doc had tentatively scheduled a scope procedure I presume to look up the urethra and into the bladder, presumably to look for potential scar tissue at the bladder sphincter/urethral reconnection. Since I improved he skipped it. Any downsides to doing the scope procedure? Could it completely regress me back to where I was at the beginning?

[mudrunner]

CapBob,

Just like every other medical situation…there’s no definitive answer. If you recall from some of my earlier posts, I’ve been on pads 24/7 for eight years. Went thru numerous procedures to get some kind of fix, but all to no avail so far.

About two years out from my RRP I went in and had the scope and roto rooter treatment to clear up the scar tissue expecting it to help stop the constant leaking…the resulting blood clots blocked me up and I ended up in the ER with 9.75 pain on the 10 scale. Worse than a hemorrhoidectomy , kidney stone or even going face first thru a car winshield.

A few more years and several sessions of urodynamic tests later I was assured that collegen injections would do the trick. Inserting a garden hose with a needle the size of a grease gun inside it turned out to be significantly less than my little unit was willing to tolerate. Ended up once again in the ER, but only hit about a 9.5 this time.

I’ve also cycled thru every medication on the market, some several times at very high doses, all without the slightest decrease in leakage but lots of unpleasant side effects.

Last fall I decided to try once more because, as you know, this is an extremely annoying problem to deal with. I got set up with a third urologist to do yet another urodynamic test as an evaluation for implanting an Interstim. This effort was put into (I hope) a short term abeyance by my diagnosis of lymphoma.

I completed my 7th of 8 CVP-R chemo sessions last Thursday and have noticed a definite correlation between these 21 day interval sessions and increased leakage. I have no way of knowing which of the several forms of draino I’m getting is causing it, but for the first 3 or 4 days I leak almost constantly. Worse, I’m usually unaware of it and have soaked my cloths down a bunch of times. I always carry extra pads and a complete change of cloths with me but have seldom had to actually use the cloths until these chemo capers came along.

In summary, it’s my OPINION that we “leakers” have one of two problems: the mechanics are broken OR the electrics are defective.

If the valve won’t shut down tight, we’ll leak. This may be fixed with exercise or a mechanical intervention like (ugh) collagen injections, a sling or an AUS. Personally I can’t see using one of those external clamps, but for some guys…perhaps.

The electrical (control) issue in my experience is the more complicated one. I'm certain it's because there are so many interrelated activities. Simply stated, the single remaining sphincter has to relax while the bladder has to contract. Without very extensive (and expensive) tests I think most of the MD’s just do a WAG and have you try each of the available drugs to see if anything sticks. When this doesn’t work…well, perhaps I’ll be able to give you an even more experienced answer once I get the lymphoma situation under control (I hope) later this summer.

[CapBob]

Originally Posted by mudrunner

CapBob,

Just like every other medical situation…there’s no definitive answer. If you recall from some of my earlier posts, I’ve been on pads 24/7 for eight years. Went thru numerous procedures to get some kind of fix, but all to no avail so far.

About two years out from my RRP I went in and had the scope and roto rooter treatment to clear up the scar tissue expecting it to help stop the constant leaking…the resulting blood clots blocked me up and I ended up in the ER with 9.75 pain on the 10 scale. Worse than a hemorrhoidectomy , kidney stone or even going face first thru a car winshield.

A few more years and several sessions of urodynamic tests later I was assured that collegen injections would do the trick. Inserting a garden hose with a needle the size of a grease gun inside it turned out to be significantly less than my little unit was willing to tolerate. Ended up once again in the ER, but only hit about a 9.5 this time.

I’ve also cycled thru every medication on the market, some several times at very high doses, all without the slightest decrease in leakage but lots of unpleasant side effects.

Last fall I decided to try once more because, as you know, this is an extremely annoying problem to deal with. I got set up with a third urologist to do yet another urodynamic test as an evaluation for implanting an Interstim. This effort was put into (I hope) a short term abeyance by my diagnosis of lymphoma.

I completed my 7th of 8 CVP-R chemo sessions last Thursday and have noticed a definite correlation between these 21 day interval sessions and increased leakage. I have no way of knowing which of the several forms of draino I’m getting is causing it, but for the first 3 or 4 days I leak almost constantly. Worse, I’m usually unaware of it and have soaked my cloths down a bunch of times. I always carry extra pads and a complete change of cloths with me but have seldom had to actually use the cloths until these chemo capers came along.

In summary, it’s my OPINION that we “leakers” have one of two problems: the mechanics are broken OR the electrics are defective.

If the valve won’t shut down tight, we’ll leak. This may be fixed with exercise or a mechanical intervention like (ugh) collagen injections, a sling or an AUS. Personally I can’t see using one of those external clamps, but for some guys…perhaps.

The electrical (control) issue in my experience is the more complicated one. I'm certain it's because there are so many interrelated activities. Simply stated, the single remaining sphincter has to relax while the bladder has to contract. Without very extensive (and expensive) tests I think most of the MD’s just do a WAG and have you try each of the available drugs to see if anything sticks. When this doesn’t work…well, perhaps I’ll be able to give you an even more experienced answer once I get the lymphoma situation under control (I hope) later this summer.

For one thing, after reading your experiences I have little to complain about, of which I need to remind myself...sincere thanks. Part of my disappointment is based on my surgeon's assurances (now apparent sales job) that (apparently) based on his skill and track record I wouldn't have significant issues. And in reality they aren't that significant, (especially to him) there's no gushing or large volume squirts just periodic seepage, which for the most part is contained by one of the thinner pad every 24 hours. Truth be told I should be using two some days, but it's a mental thing to only "need" one. I am just hoping that at 4 months out I can still expect some more improvement, but the recent setbacks have me doubting it. I'm going back to work and it will surely complicate things to say the least. One of the urologists I see said that no respectable doctor would advocate a sling procedure before one year, and it is difficult weighing the advertised roughly 80% success rates against the possible downsides. He also said the collegen is a waste of time for men and that the AUS is over-cumbersome. So that leaves me with exercises, which my surgeon says are a waste of time and regrets over not going with the radiation treatment instead, even with it's set of doubts and downsides. At this point I'm considering hypnotism, ***** doctors or an exorcist as it's like Chinese water torture as it is today

[tumbleweed]

Sorry to hear things are not getting better quickly for you. I recall many years ago (about 1962) there was contraceptive device which worked by having a fairly stiff tube being inserted in a chap's urethra with a rubber bag folded up inside it to catch the sperm. I don't know if they are still around or if they would be suitable for preventing urine leakage anyway, but if they would it would get away from the problems of an external clamp.

T.

[MMS2]

CapBob:
like myself, you've only been through this process only for a few months. I am 5 months post RRP. I am still seeing improvement in the continence dept. I maintain a good diet, walk a lot and empty my bladder a lot. That way I have been able to do away with pads all together. So, as the everyone says, hang in. My ED is a whole other issue, but I will give it till nine months before any major decisions, and this is what my surgent recommended as well.