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incontinence

karl
Posts: 1
Joined: Jul 2000

I am still experincing a great deal of incontinence 5 months after my surgery, especially while I am standing. getting to the bathroom after I have been sitting for awhile or sleeping has gotten alot better. Is it abnormal to go this long with this type of incontinence, or am I expecting too much too soon ?

peakerr
Posts: 1
Joined: Oct 2001

karl, i had surgury may 23 iam still in dipers, i have no control at all. can you elaberate more on the stages you went through from the begening to where your at now.

2375dgg
Posts: 31
Joined: Oct 2000

Both of you are probably experiencing the well known "SECRET" of RP. This is the subject that many an urologist will fail to mention to persons having RP, that is the percentage that will have incontinence for the rest of their life. The docs want to cut the cancer out, but fail to tell the patient what can be the result of the treatment. I personally know many men who have had RP and about 40-50% are incontinent. Maybe soneone with a good experience or someone who is in the same situation as you will respond. I had seeds so what I experienced does not apply. Dennis

bwalker5839
Posts: 11
Joined: Sep 2002

Hi. I had seeds also, after 45 days radiation. It didn't work. One year later i had Cryo. It got the cancer, but 6 months after that i started having problems, first unable to pee (had catheter 4 times) then problems dripping. Seems to be an increasing problem. Still fighting it & seeing doctors. Any advice?

CharlieG's picture
CharlieG
Posts: 67
Joined: Mar 2010

I am aproaching 1 year since my RP. I can tell you that almost everyone's experience with incontinence is different. Your experience sounds a lot like mine in that at the 5 month mark, there is still some problem.

I kept on with the Kegles and I got better and better although it was not linear. Some days/weeks were better and some seemed worse.

Now at 10 months, I am in pretty good shape but still wear a pad just in case. I am pretty much just having "Stress incontinence" when I strain a little or laugh hard, I can leak a little. Golf or heavy lifting might make me wet a little.

The bottom line is that after the prostate is removed, we go from three urinary sphincters to one and we have to build up the one or it leaks terribly. Sometimes the one just won't do it for some folks and that sucks.

I feel very lucky that I am cancer free and all I have to deal with is puttin on a pad in the morning.

Good luck and keep the faith!

redleg53
Posts: 3
Joined: Jul 2011

Da Vinci 2006 Radiotherapy 2008 Hormone treatment Zoladex till DDUP
Incontinence pisses me off, just the inconvenience, annoyance, and sometimes embarassment.
Impotence with hormone t sucks John

VascodaGama's picture
VascodaGama
Posts: 1515
Joined: Nov 2010

Charlie
Congratulations on the improvement.
I would appreciate if you explain about your actions/doings to avoid incontinence along your ten months recovery.
How were kegles done, daily? With electric stimulations?
Have you changed habits such as drinking less fluids at night or before any particular event (like when going out for dinner, etc.) ?
Do you take a pack of paddies along with the golf bag?

Thanks for sharing.

John,
Incontinence may be just a temporary side effect. You can read about details done by survivors in this forum to have those “lovely-nights” back to the beginning. Just do a research on past threads.

Wishing you both complete and soonest recovery from treatment.

VGama

CharlieG's picture
CharlieG
Posts: 67
Joined: Mar 2010

VGama - I was doing 10-15 Kegles holding for 10 seconds about 3 times a day. Then I did 10-15 holding for 3 seconds abot 3 times a day. No assistance, just trying to get the sensation of cutting off a stream or, as someone once put it, trying to pick up a grape with your butt cheeks!

I do take an extra pad with me when out for golf although I rarely find the need to change it for urine... more likely for sweat. I used to carry several with me at all times but now I am just putting one on in the morning and taking it off at night - often with little or nothing evident in the pad. I just like the insurance...

Before I even had prostate issues, I found the need to cut back on drinking fluids after about 7:30 or 8:00pm. I also found that one last pee at about 11pm or so helped me make it through the night.

Like I said, I feel lucky compared to some of the stories I hear. However, my brother had surgery 10 years ago and says that his incontinence only last a few weeks. I think that he is either lying to me or has a very bad memory! :-)

Randall72
Posts: 34
Joined: Mar 2011

Hi I too had RP about 3 weeks ago,at 1st was going through 4-5 pads a day.Now I'm almost down to 2.What difficult for me to deterine,is it pee or sweat. My "accidents",have come while sleeping.I sleep with 2 thick towels,pad and shorts every nite.I do take showers twice a day,morning and nite.Thats when i change pad. Rarely now i change during the day. I know I have better control while standing,or walking,buy still that urge,and when I go it only might be drips or short squirt.I do catch the "major" ones. Maybe you might want to ask your Dr if you can take Flomax,at nite to slow down the flow. ( good for 24 hrs).The brand diper I use is from Walgreens,"certainity",runs about $20 for 36. Hopefully this help.Be patient. Also I do take a 20 min walk every morning,maybe that helped me bulid up that muscle for control. BUT I will say I do have my bad also.Just thankfull to be a survivor.Good luck and God bless Randall72

ProfWagstaff's picture
ProfWagstaff
Posts: 98
Joined: Jun 2010

I guess I must be at the other extreme. Had RP in May of '09 for stage 2 PCa with capsule penetration in 2 spots. Afterward, I was asked to do kegels 5 times per day with 5 reps each. I was told to add 5 reps a week until I was doing 5 sets of 60 per day. I was using pads during the day and Depends for overnight use for a couple weeks until I noticed that the Depends were still dry about 5 mornings in a row. Then I switched to pads for day and night usage. Three months after surgery, I was down to 1 pad per day from my starting point of 5 per day. Urologist suggested that I might subconsciously be relying on the safety valve of that one pad and that I should try going without. Have not used a pad and have not looked back since. When I see my urologist, one of the questions concerns leakage frequency and amount over the previous 4 weeks. About half the time, I've had no leakage at all. The other half, I've had maybe one or two instances in the previous 4 weeks and then only a few drops each time. I was far from an ideal candidate going into surgery - about 70-80 lbs overweight. I've had no complaints about the surgery or my results since. I absolutely made the right choice for me - including choice of surgeon.

VascodaGama's picture
VascodaGama
Posts: 1515
Joined: Nov 2010

Thanks for sharing your experiences. I was a fortunate in matters of incontinence. Never needed anything since the moment I took out the cath. However, this matter was so much important in my surgeon care that he would not allow patients to be discharged from the hospital until the sphincter V-neck shape have heeled and the cathedra were withdrawn. This after-care “services” of 12 days may be the reason for my dry results.

Charlie comment recalls past moments in my youth. Instead of trying to pick up a grape one could try to pick up a Dollar bill. I have seen that act in somewhere before.

The best to all of you.

VGama

JEHJR's picture
JEHJR
Posts: 25
Joined: Feb 2013

I agree with the statement that everyone is different. I have spoken with close to a dozen people that have had surgery. 35 years ago I have been told surgery was brutal. Almost all became incontinent and impotent so most of us are very lucky.

I spoke with staff after surgery and one of my concerns had to deal with how to deal with incontinence. I found a site that broke down the different pads/guards by volume, cost, shape, which encouraged me to write a paper for my doctor to give patients. The head nurse said that she was amazed at how many men came to have their catheter removed and brought no pads/guards. I started with Depends and then found TENA, loved my TENA guards.

http://www.nationalincontinence.com/s/Compare_Guards_for_Men

The other issue was the instructions on how to perform Kegal exercise. I asked "how do I know if I am doing them right." The paper from the hospital was useless in my opinion. I found UK youtube a great help. I learned about pelvic floor, dribble, exercises, most had woman as the target audiance but when you know that men and woman have close to the same urinary system we can use their material.

Although I have almost regained all control I still get depressed if I have a bad day. Exercise, diet, and rest are very important. I watched this video almost every day until I had it right.

David Hughes Pelvic Floor Exercise

http://www.youtube.com/watch?feature=endscreen&v=QHwVglPQR_w&NR=1

Wish you luck, Jim

califvader's picture
califvader
Posts: 108
Joined: Aug 2010

i had a r/p in sept. of 2003.  i actually went well over a year with no problems of leakage.  i didn't have my first slip until a bought a brand new matteress for my bed.  i kid you not.  since then the only time i need to wear a depends is when i'm sleeping.  if i fall asleep in my lazy boy chair  it can happen there too.  so i put a 36 by 36 bed pad on the chair at all times.  i've learned what i need to do.   i can go for days without having a slip and then bam it happens.

JEHJR's picture
JEHJR
Posts: 25
Joined: Feb 2013

Just curious, are you still doing kegels?

dagmac74
Posts: 2
Joined: Feb 2013

I had RP in 1995 and have had a degree of incontinence since. In 2003 I had a "V-sling" put in, and that helped for a few years. However, I still have to wear a light-to-moderate control pad (Dignity ThinSerts), and lately they are becoming less effective. Don't know what to do now but will talk with my urologist about it.

RFTW's picture
RFTW
Posts: 1
Joined: Feb 2013

I had LRP done in April 2004. upon biopsy I was rated at a gleason 8 with some involvement outside the prostate. I was incontinent from day one. Since then I have had varying levels of control from light to heavy discharge. But I have always had to wear protection. Most recently I was using as many as three pads a day. I went to my Uroligist about a year ago and after the cystoscopy we found the scar tissue from the surgery was beginning to block the opening from my bladder. After a procedure to relieve this I was only using 1 pad a day, and then a very light flow, until about a month ago i started to experience a little heavier flow. I wanted to get ahead of it this time, so after another cystoscopy and finding there is nothing he can do to clear it any better, we are talking about an artificial Sphinter. Research on this shows that about 80 to 90 percent of those that get this become 100 percent continent. The others experience a great reduction in flow. I am talking about it with my wife and my doctor and will probably make the final decision soon.

I do not like the idea of another surgery but if the outcome is as expected it would be well worth it.

At the most the use of pads has been a bother and if this were the best I could do I could live with it and not be to terribly unhappy. At 65 I am able to stay pretty active and enjoy life. But the thought of not having to take pads everywhere I go is certainly appealling. I do long rides on my motorcycle and either have to pack quite a few pads or stop to replenish along the way. Packing pads along with all of the clothes we need for a three week trip on a bike with my wife along is a challenge.

I find that I am just happy to be alive and capable of doing the things I love. It has been a long journey and there have been, and will be, bumps in the road, but overall my intentions are  to not dwell on the negatives but find the positives and live my life to the fullest.

Good luck to all of you.

Welcome to the brotherhood of the walnut.

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