Three months since prostatectomy

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Hi everyone. I'm Harold from Northern Ireland. It's just over three months since my robotically assisted prostatectomy. My consultant said about 80 percent of men will be fully continent, about 15 percent have a slight issue but very manageable with pads eg a light shield once or twice a day. The remaining 5 per cent or so have more significant ongoing problem. Since my catheter was removed I am very incontinent during the day. I basically drip or leak continually if I'm walking or working at any physical task. I'm a bit better when seated and almost dry at night. I'm seeing very little progress as the weeks go by and I measure progress by weighing my pads/pull ups. I have to change around 6/7 times a day and don't feel able to venture too far from home. I will be seeing my pelvic physio soon again and I'm wondering should I just bit the bullet and go for the artificial sphinter. At times " marinading in pee" gets stressful and I think "I can't spend the rest of my life like this."

 

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Had the same surgery July 2021. It took 3 months to see a measurable improvement. Each month after that there was obvious improvement. I did not stop using pads until March 2022. There are still times of minor leakage but not too bad.
In retrospect it seemed like nothing was getting better but it did improve slowly. The point of this note is that it will be slow, but there will be improvement. Kegel exercises were a big part of that improvement. Keep your head up. This too shall pass.

 

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Your stats are correct. It's the fact that it happens across a timeline of upto 2yrs. Don't expect to see any real progress till month 6. I'm 9months post-op. Still need shields. Be patient.

 

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Too early for that decision. My urologist and surgeon both said that you need to wait a year to see if you fall within the 80% naturally or by using the kegel exercises. All of us hate the stewing, but all things in due time. I didn't get much progress after a year and had the AUS installed, which cut me down from about 20 oz a day to 1 oz or less per day.

You might want to start to measure your daily progress. Measure the weight of your dry pads and then when you change them put them in a plastic bag and weigh the bag at the end of the day. You will know what the difference is between the dry pads and the wet pads, which will give you a very good idea of your progress or not. That will be useful information in deciding between a sling or an AUS when consulting with your doctor down the road.

Good luck. We have all been there.

 

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Be patient, I’m 14 months from my surgery still leaking sometimes heavy, but with pads I’m able to work with no issues.
Do you mind telling your age? I’m 67 and from what I read once you’re over 65 it takes longer to recover. My friend had his surgery in his late 40’s and he had no issues after about 1 month, which lead me to believe age has a lot to do with recovery.

 

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Hi Hbrownlow, I too am about 3 months post RRP and from what I’ve gathered, the consensus here is spot on. Way too early to consider surgical interventions. Be patient.

 

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I am 70 years old and 5 months post-surgery, and I can say that my progress has been frustratingly slow, even with consistent pelvic floor therapy. But, looking back, there has been progress. Also, the more active you are, the more frustrating it is because it seems like you're always drenched. I use a clamp sometimes to give me a break.

 

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Did you do your Kegels regularly?

 

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I'm 67yo and 10 1/2 months post surgery now. I leaked heavily and consistently for the first 3-4 months after surgery but persevered with my pelvic exercises with the assistance of a specialist pelvic floor physiotherapist. From the 3 - 4 month point on my improvement has been steady and I now don't leak at night at all and get through days with only occasional stress leaks that are easily handled by a light shield. As others are saying, the first 3 months is horrific but you should start seeing improvement soon.

 

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Thanks everyone. I am 67 and active, not overweight. I do 4/5 sets of Kegels each day. My physio said to mostly do them standing since my problem is most severe when I'm standing. I usually do them standing over the toilet as the quick ones cause a fair bit of leakage.
I do, as suggested,weigh my pads/pull ups. I use metric measures and a gram of water is a millilitre. I can leak up to 600mls in a day and I never have to go to the toilet when I'm up and active. It's only after sitting for a hour or more that I can make it to the loo and pass urine normally. I also have to get up twice during the night. This is the only time my brain tells me that I need to go. I pass urine normally then as well. Mind you the bathroom is very close to my bedroom.

 

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Hi everyone, please remember even with all the disappointments we must not forget the cancer is gone, so we must be thankful for that. I pray we will all remain cancer free from now on.

 

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Yes that's true. My Gleason score was 7 and the biopsy revealed the cancer was contained in the gland. Margins were negative and my first PSA was non detectable. So yes thankful for all of that. Also thankful that I had no post operative complications. It's just that the current level of incontinence means there are places I can't go to and things I can't do. For example, I play the bagpipes and recently the All Ireland Pipe band championship was held over 200 miles away in the south of ireland. There was no way I could go on a coach trip that far. Also I can't play the pipes at the moment because of the pressure on the abdomen caused by blowing. However, as others have said, hopefully things will improve with time and everyone going through this journey can get back to the things we enjoy

 

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I have to comment given you’ve gotten excellent perspectives. I’m about 5 months out and was totally dissatisfied in first month because of penis pain. Sometimes I feel things are not getting better then I think back and yes they are. So hang in there it does slowly start to improve.

Question to forum. How do you weight your pads. I have no clue how much I’m leaking and would really like to know volume-wise

 

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@Esheelion
I use a small kitchen scale measuring in grams. In general, one gram equals one ml.

When I was measuring, I would write down the time and amount of the weigh minus weight of a dry pad.

I used a school spiral binder (70 sheets). I left 5 pages blank to use later to write the week so that I could see changes week to week.

I would add up for the day, then week. I would start a new page for each week (a week took multiple pages).

I google "convert g to oz" to give me the ounces. For the weekly summary, I included both ml (grams) and ounces. The doctors understand ml and I related to ounces.

 

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Thanks, Thudson1965, I appreciate the points. I will try the scale.

 

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I do exactly as Thudson1965 described. I keep a small set of scales in my bedroom. And 1gm of water equals one millitre. We can assume that urine and water are pretty similar density. I only did a daily tally but I can see the value in weekly.

 

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Hang in there! It's much to early to consider an artificial sphincter. You will probably see improvement starting at 4 months and if you are like most people you will be in good shape at a year post-surgery. Some people do have more problems after that but most are "socially continent" (1 pad for leaks) at about a year or maybe a little more. It gets better.

 

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My physiotherapist encouraged me to do my exercises each morning while walking my dog as one of my three times per day, plus once while standing and once while sitting. The walking was the hardest and was a very messy exercise for quite a while, requiring a shower and change of pullups afterwards initially, then heavy pads to medium pads to light pads as I gradually improved. She also kept gradually increasing the number and duration of repetitions. I haven't seen her for a while now as I haven't needed to and at 10 1/2 months post surgery I now only do the one set of exercises each day during my morning walk, but it is a big set, and I am still gradually increasing the intensity and repetitions myself ~ currently 30 machinegun pelvic clenches to warm up, then 10 x count of 50 pelvic clenches, then 10 x count of 35 combined pelvic & transverse abdominis clenches. I use only a light shield while walking and don't usually leak during the walk so am able to use the same shield for the rest of the day. The only time I leak nowadays is an occasional small stress leak, usually when I make a sudden movement without preparing myself, and I am still improving, so am hopeful that will also cease before long.

 

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I am also 67 years old. I am just three weeks past my catheter removal. Happily, I was able to stop a full-on urine stream as soon as I got home from the hospital, though I am still changing my undergarment four to six times a day. I don't leak at night or at any time that I am horizontal. During the daytime my leaky condition is as most of you have expressed, and I found it a laughable moment just now when I read Hbrownlow express his experience as "marinading in his own urine", since that is exactly how I described in to a family member yesterday... (to Hbrownlow, I don't really know anything about my heritage, but my last name is McGee). It is from rising from a sitting position or whenever I bend down to pick something up from the floor that I get the most leakage, but I am finding that if I think about it before I stand or when I bend over, I can, most of the time, regulate the leakage before it starts by clinching that muscle before I begin to move and for 20 seconds or so as I walk away.
I am also very impatient, but am thankful that my Gleason score was only somewhere between 6 and 7, depending on which expert I believe. My surgeon said that he expected to find no cancer outside of the gland once my blood is tested in a couple of months. In any case I needed to do something drastic because the size of my prostate gland was already causing a lot of urination trouble. Best wishes to all

 

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McGee, could be Scottish or Irish origin I guess. I actually tried a conveen or urinary sheath today for the first time as I was very active putting up a garden fence. It worked quite well and apart from occasionally emptying the leg bag I didn't have all of the pad changing and washing every wee while to do. I enjoyed the freedom but not sure Id want to use it every day. The glue is quite sticky and not the easiest to remove