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Old 04-11-2008, 01:06 PM   #1
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Incontinence Setbacks?

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?

 
Old 04-15-2008, 08:16 AM   #2
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Re: Incontinence Setbacks?

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.

 
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Old 04-15-2008, 08:46 AM   #3
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Wink Re: Incontinence Setbacks?

Quote:
Originally Posted by mudrunner View Post
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, witch doctors or an exorcist as it's like Chinese water torture as it is today

 
Old 04-15-2008, 12:29 PM   #4
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Re: Incontinence Setbacks?

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.
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Peter, Brachytherapy in Guildford, England March 2008

 
Old 04-15-2008, 04:23 PM   #5
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Re: Incontinence Setbacks?

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.

 
Old 04-15-2008, 09:46 PM   #6
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Re: Incontinence Setbacks?

Quote:
Originally Posted by MMS2 View Post
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.
I make you my official poster-boy since you're just "ahead" of me chronologically

I haven't gotten back on an exercise routine, but I'm at optimum weight and have great stats, so that's my excuse and I'm sticking with it . But strengthening abs certainly wouldn't hurt. I just can't seem to get back in the swing of things due to the leakage..it's a vicious cycle indeed. My surgeon says some interesting things which differ from others...clearly somebody is indeed "practicing" medicine since somebody has to have it right/wrong. I'm actually consulting with three different ones then researching myself and trying to chart a course.

For example, one says Kegel exercises are a waste of time since the abdominal floor and bladder sphincter muscles are completely separate. Another says "...do them ALL the time, I'm doing them as we speak..." (he doesn't even have PC or urinary problems so I don't get that). One says he would do the sling at four months if I "get impatient", another says no responsible doctor would do the sling before one year. One says the vacuum pump helps and I should do it every day along with Cialis, while another says the pump is a waste of time and I should use only Viagra and a particular brand of injections while yet another says not to use that brand of injections, but to use his recommendation of injection medicine and the pump, but not on Wednesdays

Some days I wish I had done the radiation instead, and yet other days I wish I never even had a PSA test in the first place. Odds are I'd get creamed by a bus looking the wrong way crossing the street in Hong Kong before PC got me anyway. But at least I'd have no pads in my underwear and likely sporting wood for another ten years or so before I caught that bus.

 
Old 04-16-2008, 10:11 AM   #7
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Re: Incontinence Setbacks?

CapBob,

If the hypnosis thing works, let me know. Funny you should mention it because just last week (before lymphoma chemo #7) I was looking in the phone book for one. In keeping with my current medical status, I can’t consider any physically invasive procedures, but have lately given a lot of thought to the “mind over matter” possibility. I’ve never, ever, seen anyone post on this course of action.

This may be because we “leakers” are supposedly so few, there’s been no one desperate (or renegade from “main stream” medicine) enough to try it. Most of the literature I’ve seen (usually MD originated) implies, suggests or downright states long term leakage after RRP is not a widespread problem. I personally don’t believe this to be true. I think many guys are just embarrassed or otherwise reluctant to go public in any way. As for me, after all these years and so many other medical challenges, I DON”T GIVE A DINKERS DAMN about what other people may see as an embarrassment. It is what it is.

When my left leg lymphodema (fallout from the RRP) gets bad and I can’t bike or run as well as usual, I tell my friends what the problem is and they accommodate me. When I tell them I have to stop for a pad or cloths change, none have shown any kind of disrespect for the imposition. When my atrial arrhythmia fires off, a simple “slow down guys” keeps me in the pack. During the “chemo brain” goofyness cycles of late, they all work to keep me going in the right direction. I believe it’s because I’ve been as open as I can be about all of this cumulative crapp. Not to elicit any kind of sympathy, but to engender an understanding of my particular physical limitations and my acknowledgement of theirs, either presently or potentially.

From your posts it’s obvious to me you’re a very intelligent and articulate man and reading from them, I can see you’re doing the same mental gymnastics all we (posting or just lurking) long-term drippers have done, and largely still do. Most have gotten past the “why me” phase and accept our situation as an un-doable fact to deal with. The “why me” suggests reason, and at least from my perspective, there is none. For others, they may see it as fate, divine intervention, bad karma, or who knows what. Per Popeye, ya pay’s yur money and ya takes yor choice. Here we are.

I’m betting most of us, like you, are floating around somewhere in the “what can I do” phase. As you can deduce from my own little trail of adventures, this can go on for a very long time. I generally experience the whole thing as an ongoing emotional rollercoaster. Swinging from thoroughly PO’d for having to drag such a big medical bag around for so long, to happy as I can be to just remain vertical and ambulatory is a major head trip. I sometimes make the journey roundtrip several times in a day.

At the risk of appearing entirely too philosophical, I often internalize to a simple decision on every one of my medical annoyances. Get up and go again…or bend over and kiss it goodbye. No doubt harsh to many ears, but when you think about it, we all make this decision each and every morning. Most of the time I believe few of us are conscious of this truth. Only when we’re poked by something like any type of the BIG C is our awareness provoked to this spiritual or philosophical level. At the start of any of these potentially lethal adventures, it’s all too easy to get mind stuck there and bore the daylights out of everyone around you if not careful.

Keep looking, keep trying and keep posting. Venting in the right exhaust pipe (here) has cathartic value. Even though I have found many of them to be less than medically reliable, reading and posting on a few boards has been occasionally mentally useful to me over the years and I expect the same will be true for you.

 
Old 04-17-2008, 08:22 AM   #8
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Re: Incontinence Setbacks?

Quote:
Originally Posted by mudrunner View Post
CapBob,

If the hypnosis thing works, let me know. Funny you should mention it because just last week (before lymphoma chemo #7) I was looking in the phone book for one. In keeping with my current medical status, I can’t consider any physically invasive procedures, but have lately given a lot of thought to the “mind over matter” possibility. I’ve never, ever, seen anyone post on this course of action.

This may be because we “leakers” are supposedly so few, there’s been no one desperate (or renegade from “main stream” medicine) enough to try it. Most of the literature I’ve seen (usually MD originated) implies, suggests or downright states long term leakage after RRP is not a widespread problem. I personally don’t believe this to be true. I think many guys are just embarrassed or otherwise reluctant to go public in any way. As for me, after all these years and so many other medical challenges, I DON”T GIVE A DINKERS DAMN about what other people may see as an embarrassment. It is what it is.

When my left leg lymphodema (fallout from the RRP) gets bad and I can’t bike or run as well as usual, I tell my friends what the problem is and they accommodate me. When I tell them I have to stop for a pad or cloths change, none have shown any kind of disrespect for the imposition. When my atrial arrhythmia fires off, a simple “slow down guys” keeps me in the pack. During the “chemo brain” goofyness cycles of late, they all work to keep me going in the right direction. I believe it’s because I’ve been as open as I can be about all of this cumulative crapp. Not to elicit any kind of sympathy, but to engender an understanding of my particular physical limitations and my acknowledgement of theirs, either presently or potentially.

From your posts it’s obvious to me you’re a very intelligent and articulate man and reading from them, I can see you’re doing the same mental gymnastics all we (posting or just lurking) long-term drippers have done, and largely still do. Most have gotten past the “why me” phase and accept our situation as an un-doable fact to deal with. The “why me” suggests reason, and at least from my perspective, there is none. For others, they may see it as fate, divine intervention, bad karma, or who knows what. Per Popeye, ya pay’s yur money and ya takes yor choice. Here we are.

I’m betting most of us, like you, are floating around somewhere in the “what can I do” phase. As you can deduce from my own little trail of adventures, this can go on for a very long time. I generally experience the whole thing as an ongoing emotional rollercoaster. Swinging from thoroughly PO’d for having to drag such a big medical bag around for so long, to happy as I can be to just remain vertical and ambulatory is a major head trip. I sometimes make the journey roundtrip several times in a day.

At the risk of appearing entirely too philosophical, I often internalize to a simple decision on every one of my medical annoyances. Get up and go again…or bend over and kiss it goodbye. No doubt harsh to many ears, but when you think about it, we all make this decision each and every morning. Most of the time I believe few of us are conscious of this truth. Only when we’re poked by something like any type of the BIG C is our awareness provoked to this spiritual or philosophical level. At the start of any of these potentially lethal adventures, it’s all too easy to get mind stuck there and bore the daylights out of everyone around you if not careful.

Keep looking, keep trying and keep posting. Venting in the right exhaust pipe (here) has cathartic value. Even though I have found many of them to be less than medically reliable, reading and posting on a few boards has been occasionally mentally useful to me over the years and I expect the same will be true for you.
Thanks for the background and encouragement. As with any non-simplistic event in life it helps to constantly be reminded that "you're not the only one" as it is human nature to retract and over-reflect/analyze everything to the point of futility, which comes faster than even the "enlightened" realize.

Part of the problem, which you allude to is that there is little or no money in post-surgical incontinence treatment for the doctors. I still believe I had a great technical surgeon, as evidenced by my physical recovery (incredibly quick) and my clean pathology and PSA's since. This was the primary objective and I need to remind myself of that. That being said, I have clearly become an annoyance to him now, and he makes very little for his time in comparison to the surgery dealing with the implication that somehow he screwed up the urethral reconnection. Beauty for him is that since there is no detailed record (film) of the surgery there is no way for his peers to critique his work...how convenient. I have no such luxuries in my work.

That is in part why I am seeing other docs obviously not under the microscope of the apparent surgical failure regarding my urethral connection who also stand to make little in trying to resolve something that at the end of the day will either resolve itself or not. In the big picture I am likely just spinning my wheels unless I actually go ahead with the sling procedure, which I am supposedly a great candidate. At least then I will have their attention again, if only for a short time .

As a side note I tried Vesicare (one of the bladder meds) for three weeks, largely at my urging, as I have trouble withstanding the apparent bladder pressure feelings and hence cannot completely fill the bladder before voiding. About all it did was give me cotton mouth and blur my vision, so I tossed it.

Thanks again for the encouragement.

 
Old 04-17-2008, 02:44 PM   #9
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Re: Incontinence Setbacks?

Hi CapBob:
By any chance can you name this 'wonderful' surgent of yours. I am in your area and a friend of mine is going through the rhythem of things as well. No big deal if you cannot divulge his name.

 
Old 04-17-2008, 03:04 PM   #10
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Re: Incontinence Setbacks?

Quote:
Originally Posted by MMS2 View Post
Hi CapBob:
By any chance can you name this 'wonderful' surgent of yours. I am in your area and a friend of mine is going through the rhythem of things as well. No big deal if you cannot divulge his name.
Dr. Steven Taylor at Pacific Urology. I met another PCA-type via this board and a mutual support group with a virtually identical case. He went to him and was pad free within two weeks or less, so go figure.

I just saw another urologist who specializes in incontinence. While he went through the motions, he couldn't be in a bigger hurry to write me a script for Detrol and move on to the next patient. Other than suggesting Kegels (like pretty much everyone but my surgeon does) he had little to offer other than that I should consider the sling by the one year mark. In all seriousness I think I should see a hypnotist, write myself a post-it note and put it on the bathroom mirror reminding me to put a pad in my underwear and forget about the whole thing.

 
Old 04-17-2008, 04:09 PM   #11
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Re: Incontinence Setbacks?

Thanks, don't write things off so fast. I am sure it will get better. Hang in.

 
Old 04-17-2008, 07:27 PM   #12
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Re: Incontinence Setbacks?

I had surgery in 1995, 39 EBR treatments in 2001 and now I have been on Zoladex as of last June. I had no incontinence until the last 5 months and I can't get any answers why. My doctors act if this is no big thing I wish they were in my shoes. They were going to cure me in 95 and then again in 01 now they say it is going to kill me. I guess I am lucky just to be on the green side of the grass but I sure would like to find out how to stop this thing from leaking.

Last edited by Dickiedo; 04-18-2008 at 05:02 PM.

 
Old 04-25-2008, 09:48 AM   #13
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Re: Incontinence Setbacks?

Quote:
Originally Posted by CapBob View Post
... Part of the problem, which you allude to is that there is little or no money in post-surgical incontinence treatment for the doctors. I still believe I had a great technical surgeon, as evidenced by my physical recovery (incredibly quick) and my clean pathology and PSA's since. ... I have clearly become an annoyance to him now, and he makes very little for his time in comparison to the surgery dealing with the implication that somehow he screwed up the urethral reconnection....

That is in part why I am seeing other docs obviously not under the microscope of the apparent surgical failure regarding my urethral connection who also stand to make little in trying to resolve something that at the end of the day will either resolve itself or not. In the big picture I am likely just spinning my wheels unless I actually go ahead with the sling procedure, which I am supposedly a great candidate. At least then I will have their attention again, if only for a short time .
Hi CapBob,

I'm sorry you are going through this tough time with incontinence. That has to be a collosal frustration!

I have never faced the issue; fortunately it's not a side effect of my therapy, intermittent hormonal blockade. But I've heard, communicated with, and talked to a lot of fellows at our support group and elsewhere, and I have a strong impression that you need to give it more time, as was suggested in another post.

You hit the nail on the head about doctors losing a lot of interest in their PC patients after they have done their treatment number. Don't feel your doctor is the only one. It's a fairly common complaint when problems develop, or even when we aren't getting enough help working through the usual side effects, as you are now.

It's possible the doctor did as good a job as possible on the urethral connection. Even the top surgeons say that they can never be sure exactly what physical biology they will encounter when they operate, and sometimes it's our own biology that leads to problems later. Of course, sometimes it is the doc's fault.

I just tried a search at the Government site [url]www.pubmed.gov[/url] for " incontinence AND radical prostatectomy ", getting 994 hits. This is in fact a very active research area, with 23 hits already in 2008 alone. Have you tried PubMed yourself? There might be some good tips there.

Knowing what your job is, I'm rather glad the quality control standards are ultra high!

Jim

 
Old 04-25-2008, 10:13 AM   #14
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Re: Incontinence Setbacks? [Dickiedo's comment]

Quote:
Originally Posted by Dickiedo View Post
I had surgery in 1995, 39 EBR treatments in 2001 and now I have been on Zoladex as of last June. I had no incontinence until the last 5 months and I can't get any answers why. My doctors act if this is no big thing I wish they were in my shoes. They were going to cure me in 95 and then again in 01 now they say it is going to kill me. I guess I am lucky just to be on the green side of the grass but I sure would like to find out how to stop this thing from leaking.
Hi Rich,

You have certainly paid your dues to beat the cancer, and I can understand your frustration.

However, I like your chances of outliving the cancer. (If you remember my case, your chances are better than my own.) Intermittent hormonal blockade works very well for a great many of us, though too many doctors are sadly misinformed and don't understand that it works as well as it does.

You've said before that your oncologist suggested another drug, and I'm guessing it was Casodex, or if not, flutamide. Personally, I'm convinced that most of us will do much better with a two, or better a three drug combination including Zoladex, Lupron or their equivalent; an antiandrogen such as Casodex preferably or flutamide; and Avodart or finasteride as the chaser; with a bisphosphonate in support (plus a calcium and high quality, absorbable vitamin D3 supplement). Avodart and finasteride add virtually no side effects to the effects of the other two drugs, with Zoladex contributing the lion's share. My impression is that Casodex doesn't add much beyond what Zoladex is already doing, though it's vital to check the liver for a few months to discover if the patient is one of the small minority that need help for liver function or who simply cannot tolerate the drug.

Quite a few veterans of surgery, radiation or both who go on triple blockade only need one course of blockade for about a year and then enjoy an indefinitely long off-therapy period of many years, using only finasteride or Avodart for maintenance. I hope you are one of them.

I doubt the blockade is connected with the incontinence.

Jim

 
Old 04-25-2008, 03:47 PM   #15
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Re: Incontinence Setbacks?

Hi CapBob,

I am seeing your thread for the first time this evening. I joined this board about a year ago and stopped posting for a while and got back on a few days ago.

My robotic RP was in August 07, I recovered gross urinary control within 30 days using two pads/day for the first month and then one thereafter. I did have several experiences of allowing my bladder to become too full and losing the entire contents, it took a while to understand the feelings of urgency for me that became totally different after the RP

In late September my first post op PSA returned 1.4 and after many diagnostics I commenced IMRT in November. I completed the IMRT in early Jan, 08. About 4 weeks in I began to have burning and almost constant urgency and more leakage, back up to two and sometimes more pads/day. I was unable to sleep for more than two hours at a time and when I went it was a tiny amount.

Since the completion of the IMRT I had an episode of total obstruction caused by scar tissue due to radiaton. That resulted in an emergency scope to burn out the obstruction and two days in the hospital and another foley for a week.

I am now fine. I wear a pad for safety but since the cysto procedure I have only had one tragic episode of loss of control.

If you contine to have annoyance another scope might be in order to check things out.

It is still early for you and there is much reason to believe that your control will continue to improve. For me all of the old cues are gone and I have had to figure out what the new sensations mean. For me the sensations are more sublte than before.

Please continue to let us know, and please continue to be confident that it will be better.

Best to you. Scott

 
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