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Posted 12/10/2010 2:27 PM (GMT 0)
Arch and Goodlife:

Thanks for your posts. It is empowering to have posts from guys who are not just a few weeks post surgery. It lets some of us see a little bit more around the corner to what is ahead. The forum has been a Godsend. It is not possible to discuss these details with anyone else outside of this "exclusive" club. Thanks for the post and reassurance.

Some days I think this will never end and it has put a damper on my enjoyment of my pathology and first post op PSA, both of which were great. I like seeing lots of zeros.

Arch: I cannot do without the nightly pad. I can leak anywhere from 3 or 4 ml to 15 - 25 in a night depending on what I drank earlier in the evening. Oddly, we eat around 7:30 to 8:00 pm because my commute is nearly 2 hours. Despite drinking as early as I can, I don't seem to urinate much at all from 9:00 pm to 11:30 pm. My body prefers to hold it until around 2:30 am and then I void about 350 to 450 ml. Tried cutting way back on pm fluids and I still get up at 2:30 am and go about 150 - 200 ml. I always have even before RP surgery. However, then my stream was tiny and voiding took forever. I am glad to be rid of the BPH issues.

Goodlife: I joke with people and tell them that radical prostate surgery secretly converts men into women but leaves the penis in place. (perhaps shorter as well but that is another story) Anyway, what you describe as your drips and drops, would be echoed by zillions of women who after childbirth or surgery are left with manageable stress incontinence. My wife keeps reminding me that I might end up in your situation. From my current vantage point that would be heaven compared to this purgatory I live in now.

Have yo thought about using one of those female small poise pads just to avoid changing underwear or would that be giving into a form of pad dependence? I can understand and support your argument to go padless. I know that after so many months of using Guards, I will be very reluctant to wean myself from the safety net they provide.

Again, thanks to all and let's keep seeing posts from the 4+ months and beyond folks on the forum.

Mike S.
Posted 12/10/2010 3:27 PM (GMT 0)
Mike,

One, I just don't want to mess with pads.  The small poise pads generally will be in the wromg place when a drip occurs.  Willie moves around a lot, and it is tough to get a pad in exactly the right spot.

Two, I can go for days with virtually no drips, and one day, again depending on what I drink, or how much, I may have a wet panty.  Usually it is not enough to soak thhrough to my pants, so it is no big deal for me.

I am finding my dry days to be occuring more and more.  I may have to lift a 100 lbs from time to time, so at those times, things may get a little squirty, but even then, I am getting better.

Good luck. It will get better.

Goodlife

Posted 12/10/2010 4:44 PM (GMT 0)
Mike, thanks for that, that was very helpful. You are probably someone who deals with technical matters. Your descriptions are well ordered and detailed. Thanks.
Posted 12/10/2010 8:30 PM (GMT 0)
Does anyone know anything about the Afex leg bag system? It is a replacement for a condom catheter without (supposedly) the drawbacks. I'm thinking about this as a way of going to work without pads.
Posted 12/10/2010 9:41 PM (GMT 0)
I hope Everyone who reads this information will pass it along to EVERYONE who is post prostatectomy... I am 10 weeks post now myself and doing great! at 3 weeks post cath removal I was frustrated also with bladder control issues and started taking 250mg magnesium in the mornings.. within 2 days I was nearly 95% better and 100% within a week of starting the magnesium.  Research it yourself and see that magnesium is for muscle and nerves.... Also I started acupuncture about same time. Look up the location of "Governor vessels 20"  and "Urinary Bladder 4".  Press thos points daily for a few minutes as well as the magnesium and you will be amazed at the results. Everyone that I have shared this with so far has been 100% satisfied!
Posted 12/10/2010 10:12 PM (GMT 0)
Hello Reminderman, welcome to the forum and thank you for posting this question. My experience is different from yours, but I am benefiting from the information posted.

I'm am today six weeks post daVinci. I have seen some significant progress. After two weeks I stopped wearing any pads at night and get up only once to empty a seemingly full bladder. I am dry virtually the entire morning. Leakage starts after lunch, primarily when walking. Does improve a bit in the evening. I am frustrated, but encouraged by reading this thread. I otherwise feel great, so naturally expect this aspect to be better as well.

There are five men at my church who have gone through this and have been "encouraging" me. They are all continent and all tell me to have patience. Hopefully patience and time will benefit you as well.

Post Edited (Pocketman) : 12/10/2010 8:23:33 PM (GMT-7)

Posted 12/13/2010 5:13 PM (GMT 0)
I read natural44's post about magnesium, and went out 3 days ago and got some. Have been taking 400mg every morning, and it sure seems like things are a bit better. I've reduced my "pad rate" by 1 or 2 per day, and overall seem to have better control.

After seeing the improvement, I did a bit of googling and found a 2003 study (http://bastyrcenter.org/content/view/792/) where 350mg of magnesium hydroxide 2x/day significantly helped women with urge incontinence.

My open RRP was 3.5 months ago, and progress on urinary continence has been pretty slow. The magnesium seems to help. Anyone else had a similar experience?

Jeff
Posted 12/14/2010 1:15 AM (GMT 0)
 

Im going to go with the magnesium based on the comments of natural44 and j53.  Also going to look up the internet sites regarding pressure points to try.  I'm 3 weeks today since catheter removal after robotic prostatectomy.  Still dripping like a faucet both day and night.  Have seen some improvement at night in that I am getting up to void only 2 times, but the amount I void is not a lot.  Best guess is about 100 to 150 ml.  Do have some better control in not leaking much by the time I get to the toilet.  Going to my therapy nurse in a week to see how well I'm doing in the Kegal exercises.  Should be able to tell if the right muscle(s) are being strengthened.  I'm very appreciative of the amount of information being shared.  It certainly has helped my perspective.

Reminderman

Posted 12/14/2010 1:48 AM (GMT 0)
Reminderman,

If you were not dry the first day, three weeks isn't much to wait. I was dry at night (getting to the can in the morning was rough, though) from day one, but it took 2 months to get down to one depend pant and eight pads a day.

It was three months to get down to two-three per day.

Keep doing Kegels (not too many at one time, it tires out the muscles) and balance it with walking (again, not all at one time).

Posted 12/17/2010 12:33 AM (GMT 0)
I had the catheter taken out two weeks ago. I find that I am mostly dry at night and while sitting. The greatest issue I have is when standing up from a chair. As soon as I stand up, I void almost everything in my bladder. Did anyonw have anything like this? If you did, how (and when) did it resolve itself?

Thanks
Posted 12/17/2010 10:39 AM (GMT 0)
It takes a while to be able to stand from a sitting position and not loose a few drops. I must say I never lost a lot when standing just a squirt or so. The worst time was getting out of bed and swinging my legs over the side, then I would have a leak, but I would make the bathroom and urinate more or less normaly. This carried on for several months in varying degrees until I eventually got rid of the pads, which by this time were just small ladies liners. I did on several times measure the amount of urine when going to the bathroom and averaged around 200 - 300 mls, and on some occassions reaching 450mls.

I am now about 19 months out from surgery and 99.999% dry, I can lift, sneeze, cough, and do more or less everything I did prior to surgery.

May I wish everybody a happy xmas and a healthy new year.

All the best from England.

Posted 12/17/2010 4:27 PM (GMT 0)
Recovery,

Similiar to me. Catheter out almost 11 weeks ago. Dry in bed and close to it sitting down. When I'm standing there is a dribble every few minutes until the bladder is empty. It's been this way since the catheter came out. Saw my uro this week and he said keep up the kelegs and you'll be dry in the next 1-3 months.
Posted 12/17/2010 4:37 PM (GMT 0)
As I posted above, I am totally dry during the night and most mornings. Afternoons and evenings I do OK sitting, but standing and walking is a still a problem similar to what Recovery posted.

I talked to my Urologist about this Tuesday (2 days ago) and he said this was pretty much the normal progression of things. He was very optimistic that I'd see some additional improvement with a few weeks. Again, it takes time and patience.

A friend who has been helping me through this, wasn't completely dry after almost 2 years. His urologist injected collagen into his sphincter which produced almost instant positive results. Probably too early for us to consider this treatment, but there are options.
Posted 12/17/2010 6:24 PM (GMT 0)
Thanks. Looks like you guys are doing very well. Numbers like 90% dry and 85% natural for ED are extremely good. I recall someone I knew considering RP ten years ago and the expected outcome seriously had this guy thinking it might be better to live ten good years and then face the consequences. If I can get to where most of you are, I will be very happy with the outcome.

Anyway, upon standing, I don't have a few drips, I void like the bladder had kicked in. When I'm sitting, I'm mostly dry, at night, I'm mostly dry and can stand in the morning and void 200-250ml under total control. However, during the act of standing from a chair, especially my desk chair which has very good support under the testicles, I void as if I were trying to. With a less supportive chair I have more control while standing. It feels like as soon as that support vanishes, the bladder kicks in, not like a spasm, but very smooth.
Posted 12/17/2010 7:37 PM (GMT 0)

Pocketman said...
As I posted above, I am totally dry during the night and most mornings. Afternoons and evenings I do OK sitting, but standing and walking is a still a problem similar to what Recovery posted.

Recovery said...
... Anyway, upon standing, I don't have a few drips, I void like the bladder had kicked in. When I'm sitting, I'm mostly dry, at night, I'm mostly dry and can stand in the morning and void 200-250ml under total control. However, during the act of standing from a chair, especially my desk chair which has very good support under the testicles, I void as if I were trying to. With a less supportive chair I have more control while standing. It feels like as soon as that support vanishes, the bladder kicks in, not like a spasm, but very smooth.


I stand corrected, Recovery, your situation is a more pronounced than mine. Still, we both seem to lack muscle strength, which everyone says will improve. I'm still pretty confident we'll both see improvement soon. BTW - I started taking magnesium supplements this morning.
Posted 12/17/2010 10:27 PM (GMT 0)

Recovery, I'm about where you are in terms of gaining control.  I've been thinking a lot about the engineering aspects of urinary control, so here goes...

When you first come out of prostate surgery, you've lost the internal sphincter, and you never had much use for that external sphincter up till now.  Let's say that S1 is the "resting strength" of the external sphincter, S2 is the "peak strength" of the sphincter when we try really hard to hold back the flow, and P is the pressure exerted by the bladder.  Initially, S1 is pretty close to zero, and S2 isn't much better, so P will always be greater than S1 and S2, and you dribble all the time.

So, every day you do those Kegel exercises to strengthen the pelvic floor/sphincter muscle.  They increase S2, but they also increase the bulk and muscle tone of the muscle, and this is really important, because it means that S1 increases too.  The pelvic floor muscles are a mix of voluntary and involuntary fibers, and the involuntary ones are the important ones for staying dry when you're not thinking about it.

The first sign of progress, then is when you can consciously hold back the flow for a few seconds, this is when S2 > P.  Then the muscle gets tired, and whoosh, there it goes.  Over time the muscle gets stronger when you clench it, and you can make it all the way to the bathroom without much leakage.  That's about where I am now.  I can walk about 10-20 seconds to the bathroom, depending on how much urine is being held back, what time of day it is, how fast I'm walking, and whether stairs are involved. :)

The second (and much more gratifying) sign of progress is when S1, the resting strength, starts increasing, and at some point S1 > P, at least some of the time.  I'm just seeing some of that in the last week or two, and it seems that I don't have to work at holding the flow so much; the sphincter seems to be doing this more or less on its own.  I honestly think the magnesium is helping, and it's probably also due to the daily Kegels.

I'm looking forward to the time when S1 > P most of the time, even if P is high, say when I've got a full bladder or I'm doing something active and outdoors.  

Hope this helps.  I'd be happy to hear from folks who are fully (or almost fully) continent, to see if this matches their experience or not.

         Jeff (the geeky one)

Posted 12/19/2010 12:01 AM (GMT 0)
I/m doing pretty good at night in that my pad is dry until I try to make it to the bathroom to void. I lose a small to moderate amount getting there. Continue dripping during the day whether I'm sitting or standing. I bought some 250 mg. magnesium oxide pills, but then discovered that I was taking many mg. of magnesium hyrooxide when I take milk of magnesia close to bed time. Have those of you who have seen some benefit of magnesium been taking magnesium oxide? Literature reports that women with over active bladders are usually treated with magnesium hydroxide.

Reminderman
Posted 12/19/2010 5:13 PM (GMT 0)
Reminderman, I'm taking the Solgar brand, it contains 400 mg magnesium oxide, which is 100% of the recommended daily amount. It's also got 230 mg calcium phosphate and 25 mg vitamin B6.

The women in the study were given 350 mg of magnesium hydroxide. I don't know the difference between the oxide and hydroxide versions.

Taking too much magnesium usually causes diarrhea. Might be a worthwhile tradeoff, though... :)

Jeff
Posted 12/29/2010 11:26 PM (GMT 0)
 

I recall that someone mentioned the AFEX system for managing incontinence but didn't give any expereince or evaluation.  Has anyone tried this system?  If so, was it with your doctor's approval.  I am now almost 6 weeks since removal of the catheter after robotic postatectomy and still don't have control of my urine when standing or sitting.  Drips and squirts occur so that I can go 2 to 2.5 hours and then have to change pads.  I know from previous comments that it is early even with the doing of Kegal exercises.  Saw my therapy nurse a couple of weeks ago and she said I was doing the exercise correctly. 

Changing pads every 2 hours is stressful when going outside the home to socialize with others.  Thus the interest in the AFEX system.

By the way, I found a resourece that is very inlightning for those considering the types of treatment for postate cancer as well as the side effects to expect afterwards.  It is an article form The New England Journal of Medicine entitled "Qulaity of Life and Satisfaction with Outcome among Prostate-Cancer Survivors"  It can be found on the internet at nejm.org.

Reminderman 

Posted 12/30/2010 4:36 PM (GMT 0)
I wouldn't recommend doing anything drastic after only six weeks. It takes a long time for those pelvic floor muscles to get strong enough to do anything useful. I was using 8-10 pads/day for nearly 3 months, then things rapidly got a lot better and I'm down to 4-5, and able to get through 2-hour social situations much better. Hang in there, Reminderman!
Posted 12/31/2010 3:09 PM (GMT 0)
Eight weeks to the day I had my catheter removed. Took my wife to the theater and dinner. Got home and the single pad I'd worn all day was only spotted. We'll see what happens the next few days, but I am encouraged. Kegels, magnesium supplements and patience seem to be paying off.
Posted 12/31/2010 3:23 PM (GMT 0)
And you were worried, looks like you will be dry soon. Congratulations!
Ron
Posted 1/8/2011 1:41 PM (GMT 0)
I had my Prostrate removed 10 years ago and I was also an unfortunate one to be a leaker but some of it had to do with strictures or scar tissue forming after surgery.

I did the Kegels and also the biofeedback and stimulator which worked for a while.

I still leaked but reduced amount.

I had strictures form - 3 weeks after surgery so that was main problem I had.

I did the bulking with both collagen & teflex ( my urologist now, doesn't recommend it since it used in in 1999 and found no lasting results for those he treated)

I just went through a Homan Laser Rotorooter in Sept 2010 and really leaking now.

Urologist said that's good thing since I am scheduled for the AMS 800 on 1/21 and  leaking is good since strictures not forming.

Cancer took time to develop and healing after surgery does too.

Don't worry just learn to accept what you have now and realize you will get better.

It is a big hit on our Ego when you didn't piss your pants and now you can't help it.

Your friends, partner and family would rather have you in the state you are than the alternative- that is what my wife says and means.

Good Luck and prayers are with you

Tom

Posted 1/11/2011 5:01 PM (GMT 0)
 

To j53 and tvwohio,

I continue to drip when I am upright and not able to urinate during the day because I suppose there is nothing there because of the dripping/leaking (now 2months after RP).  I've gone down slightly in my pad useage during the day but still not able to urinate.  I'd be interested in knowing when you were able to urinate during the day.  I know Jeff didn't see pad reduction until 3 months after RP.  Also, tvwohio mention the use of a stimulator during recovery.  What is this and what is it supposed to do?

As always, thanks for your help.

Reminderman/Kirk 

Posted 1/12/2011 12:42 AM (GMT 0)
I didn't have that problem but I did the following while healing
1) Kegel's like crazy
2) My Urologist offered trainining with a Muscle Stimulator which directly exercised the bladder muscles. It hurt like hell but helped.

Are you doing any exercises and walking while trying to hold your urine flow.

I am getting an artificial sphincter next week because I had scar tissue which they had to remove and this screwed up my sphincter more than it was.
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