Incontinence After Prostatectomy Surgery

[Archives1]

It will be 9 months post-prostatectomy for me at the end of May. My status seems very much like 56vw's in some ways: there are days that are worse than others, but I've accepted my situation. My leakage is around half an ounce (U.S.) per day now -- a huge improvement over the earlier months. I started measuring in December, at about three months out; by then, a decent amount of control had returned. On average, the reduction has been slow and small but still encouraging. I'll paste in a graph of my progress since early January. (The vertical axis represents ounces of leakage; the horizontal counts the days.) The trend line is very encouraging, but even if I've hit a plateau, I can live with half an ounce or so of leakage per day. As far as I know -- I'm a bit overdue for a PSA test because of COVID -- I'm cancer-free, and that's what matters.

(Early in March, which was six months out, I began wearing special cloth underwear that I got through Amazon. Unfortunately, the weight of the leakage doesn't register on my little scale with those, so there are many missing days on the graph. But on some days I wear Depend-like briefs so that I can get a measurement.)

Although earlier I did three to four sets of Kegels per day, for the past couple of months I've been doing three, and sometimes do fewer or -- rarely -- none because I forget. It may be my imagination, but it seems to me that after I miss a day or two, the next day's leaking sometimes feels a little more frequent.

So yes, hang in there and keep plugging.

 

[Archives1]

I'm truly amazed at your concern and need to keep track of all of this. What's the point? I am 3 yrs. post prostatectomy and still have incontinence issues. I'm nearly 73 yrs. old, and due to previous bladder issues, I knew I was a candidate for continued problems. I have decided that it is what it is. I need to wear diapers, but so what? So, did you rely on the graph to determine your progress, or you body? I guess, I don't understand the graphing. I'm sorry if I'm offending some, but geez!

 

[Archives1]

@Bob100 just keep up what you are doing, have patients your body needs time to heal. Im 61 completely dry after 12 weeks, I'm at 6 months now still dry. Hang in there.

 

[Archives1]

You're amazed, Damp, that a man concerns himself with the progress of his recovery from surgery? But if you sincerely didn't understand, you could have just asked without drama.

One reason to track in the first year is to help yourself decide whether you might benefit from pelvic floor therapy while there's still time: yeah, I feel that I'm making decent progress, but what's the objective situation, and how do things look over time? Might the data suggest that perhaps better progress could be made if I get help -- something for which I have a limited time window? Another is just plain curiosity: how does my subjective experience of this compare to objectively measured reality? Some people wouldn't have that curiosity; I do. We're not all alike, and differences aren't evidence of weakness or weirdness.

BTW, I'm 70 years old and had a grossly enlarged prostate, with the usual urinary problems, for more than three decades. I expect continued leakage, too. I was offering information to anyone here who is, like me, in the first year post-surgery and who might find some value in it -- so they can see, for example, that things can be very uneven from day to day and yet trend in the right direction even when subjectively you don't feel that happening. Obviously, Damp, you aren't part of the intended audience.

 

[Archives1]

I'm sorry I offended you. Many of us that have experienced a prostatectomy pretty much know how recovery varies from individual to individual with some having life long incontinence. If graphing out your experience helps with your acceptance/healing, great! Again, my apologizes

 

[Archives1]

daruma, Did you cook up the urine weighing system or ? I never gave anything like that a thought. I can see a mental benefit seeing the graph showing a downward trend. Gives you some kind of idea how things are going.

What kind of special cloth underwear did you buy at Amazon? What do you think of them? I have been using Sam's Club men's paper diapers with Kroger pads for months. When my supply disappears I want to go with a lighter pad and underwear. I'm not sure my old Hanes will do the trick, although I haven't given them much of try yet.

I'm also 70. Must be a bunch of us out there dealing with the results of this surgery.

 

[Archives1]

@Damp -- thanks. No problem, and best wishes to you.

 

[Archives1]

@56vw, back in December or so, someone on this forum mentioned that he was weighing his Depends (or whatever he was using; I don't remember) and tracking the change in leakage. (A U.S. ounce of water is about equivalent to an ounce of weight, and urine is close enough to water: I found that info helpful in visualizing the leakage amount, because a tablespoon holds half a fluid ounce.) I dug out a little postal scale, so old that it shows a cost of 13 cents for the first ounce, and started weighing. Before I put the Depend-type briefs on, I would weigh them and jot down the weight on a pad on my desk. (I had the pad there already: I use it to keep track of my Kegels, because my memory is poor.) When I took them off, I'd do the same and then subtract. Eventually, it occurred to me to type the difference numbers into a spreadsheet.

The incontinence underwear is called "2-Pack Men’s Incontinence Underwear Cotton Regular Absorbency Reusable Washable Urinary Incontinence Briefs for Prostate Surgical, Elder, Long Driving." The name of the seller seems to have changed, or is in the process of changing, but Amazon says that the product is the same. They're not cheap, at $29.65 for a two-pack, but they work for me and are holding up well, and the cost of paper products goes on and on (as does one's contribution to the landfill). The advertised claim is that they're good for up to 6.8 ounces; at an average 0.5 oz., my leakage level is much lower than that, so I can't say how well they work for higher levels. Also, I found that the sizes run small, so you might want to keep that in mind if you order some. (Oddly, though, they are listed as being returnable.)

 

[Archives1]

Kudos for figuring a simple way to do your measuring. I'll check out the underwear. Thanks.

 

[Archives1]

@Kirk I also have had a couple of blood discharges in my urine. I am 9 months post op. Recently had one. Really trust my surgeon and have been told it is part of the healing.....some leakage still,but at 98% continent. No longer wearing men diapers, but a small pad. My other function has also returned. No complaints here

 

[Archives1]

The blood in the leakage could be from urinary track stress, maybe from exercising or walking to much. Mine happened while walking to fast on treadmill. I run know and have no problems so it should go away with time. That little word time seems to be a theme with recovery

I just turned 6 months last week and dont leak with general living and sleeping. But when I exercise I leak a good amount, and sneezing and coughing. Caffeine and definitely alcohol makes me leak. I think it will get better and leak less. But feel I will leak somewhat when the bladder is stressed. Kegals don’t help either. @ 54 yrs old

 

[Archives1]

Dam cell phone. Excuse my spelling

 

[Archives1]

Wetdrymee2, "No longer wearing men diapers, but a small pad." I want to start using a small pad. What brand are you using? Are they working good for you? Thanks.

 

[Archives1]

Equate Options pads, long length, work great
Cheap in a package of 60
Gets the job done
Made in the USA!

 

[Archives1]

Thanks!

 

[Archives1]

I'm a newbie here, just had my radical robotic prostatectomy April 28th. My family doctor failed to check my PSA for two straight years, when they finally did a test in Sept 2019, it was 5.1. Sent me to a local urologist, did three more tests up into January of 2020 with the highest number being 8.4. Next was the biopsy in mid Feb and it came back Cancer with a Gleason score of 9. Bam, just like that I have an advanced grade cancer was was immediately referred to a world renowned place in Cleveland. I met first in mid March, had and MRI and full body bone scan on March 25th, followed by surgery on April 28th.

Not much was said about incontinence during the pre-surgery meeting, kind of blew over it like it was not a big deal. Immediately after having the catheter removed I was an open faucet. I was 200 mile from home and even though I brought 5 extra pads I was soaked form the waste down. They of course told me to drink plenty of water or gatorade on the way home, but never mentioned you might piss like a race horse. I quit drinking fluids about half way home, but it was too late. What a disaster.

So right now I am 3 weeks post catheter removal and I go through 6-8 pads a day easily. Sitting down seems to be the best, but when I get up the stream starts to flow. I really have no idea what to expect a month from now, but I'm pretty discouraged to start. And when the called me about the initial pathology report, they said I still have remaining cancer and will probably have to go through radiation and hormonal therapy. So my next 12 months will not be fun and who know if it will ever go away.

Losing as much as you do during that kind of an operation is bad enough without having to deal with incontinence. By the way I'm 67 years old, have a mild case of Type II diabetes, and hypertension. I know everyone's advise is Patience, but it's pretty hard being in the place I'm in right now. I wonder everyday if I should have opted for the radiation to begin with.

 

[Archives1]

Sorry to hear the road you have gone down. My cancer wasn’t as severe as yours. But the leakage part everyone can relate too. There are a few that jump back to normal within weeks. But most on here see slower results. Me: two months to get back bladder control, and stress leakage (coughing, bending over, walking long distance, exercising, etc) gets better every month. But it is so minor you don’t feel like you notice. 6 months in I don’t wear a pad but have to use the smaller shield. Still have a bad day but for the most part I only have drips now. If you do radiation you more than likely go back to square one all over again. I personally think you did the right thing having it removed. Living as long as you can is most important. Just hang in there with the rest

 

[Archives1]

Bgharvey:Had my surgery 20th of April my story is a lot like yours.69 years old psa 8.3,gleason 9,grade group 5. Had some positive margins on pathology report.No lymph node cells but seminal vesticle invasion. Cath out 29th of Apr.and waterfalls.So the 27th will be 4 weeks post Cath.Probably go through 7 or 8 dipers a day. Some improvement noticed but sometimes feel so hopeless.Have to deal with this one day at a time, only way to stay sane.Finding this site helpful.Hope people keep posting, it helps.Birds of a feather and all.
I can stand up now and hold bladder.Usually walk to the bathroom and hold it but when it wants to come it comes.Sitting in the chair can control it most of the time but have been staying active with no control.It seems like when I can control it only less than a cup comes out.
You can't undo the surgery so now it's on to the next thing. Pretty humbling hand to be dealt but don't go through the riggers of radiation before it's time

 

[Archives1]

newbie here.
Robot prostatectomy 2.5 months ago. Gleason 7,involvement in seminal vesicles. Currently psa is undetectable. Traumatic Foley insertion. Age 66

I've read the forum posts, and I think I'm doing ok. I had no leaks at night in bed from Foley removal. Biggest problem was going from sitting to standing. Got control of sneezing and coughs in a couple of weeks. Farting took longer.

Stopped wearing pads during the day a couple of weeks ago. I put one on at 8 pm and remove it at bedtime. Currently my biggest problem is immediately after urinating. A drop may roll out. Not too different from pre surgery.

I walk two to four hours daily. Do kegels irregularly. Try to empty bladder before it's full...one to two hours.

Not trying to rub anybody's nose in anything, just wanted to share my progress.

Alcohol definitely makes it worse.

 

[Archives1]

Robotic surgery 5 weeks ago. 73 years old. Little to no control of leakage. Using 5-6 pads per day. Incredibly frustrating. No noticeable change in 5 weeks. Besides Kegles, what exercises have been helpful to you? I'll do anything at this point to stop sitting in my own urine. RCA