significant "leakage" after prostatectomy

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its different for everyone. I needed 2 to 3 pads a day for a few months after surgery. nothing to drink after dinner time. but still got up a few times a night. and that slowly reduced to where I am now: tea right before bed and not needing to get up. then i had 35 radiation treatments. still leaking. but leakage remained the same after radiation. 1 pad a day. no pads at night and nothing needed when i first get up. But it gets worse towards the middle and end of the day. some days better than other days. but any heavy movement like up and down steps or yard work or such is more leakage. still doing kegels. went to pt for a few months. best part of pt is learning what exercises help and whether or not you are doing kegels correctly. worse comes to worse, i'll get the sling to fix it.

 

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Apologies about the length of this reply.

Key points for me are:

regardless of what the various websites tell us our recovery to an acceptable continence level can take 12-18 months;
keep the kegels going even if they don't seem to be working;
keeping a graph of leakage helped me visualise my progress-good and bad days.

I'm 71 and had a RALP late October 2023. On the advice of my physio I kept a detailed diary of liquid input, urine output and (continence) pad weight and numbers used per day. I consulted him fortnightly 3 times after my catheter removal. I was advised to limit physical activity for the first 6 weeks and lift no more than 3kg and drink at least 2L of water per day. From week 2 I started walking 20 min per day and tried to have some movement every hou. My physio had me doing 5 fast kegels 5 times per day for 4 weeks post catheter removal; then added 5 slower 10 sec holds 5 times per day from week 6 which I keep doing.

For the first 4 weeks I was still urinating 13-16 times a day. I was leaking 250-300mL per day, around 30 mL per night using minimum 3 level 3 pads. The diary enabled my to track trends eg I had much less leakage in the morning and much more 2-6 pm.

While I didn't feel positive, my physio was commenting that my leakage wasn't increasing as my activity levels increased.

I had a week 7 post-op visit (minimal PSA...YES!!!) to my urologist was received reports from the physio. He felt my lack of improvement was due to a pre-existing over active bladder (OAB) and suggested I take Betmiga (mirabegron). He also advised to decrease water intake and drink when thirsty. I now drink 1.5-2L per day depending on weather...hot summer in Australia at the moment.

Had an almost immediate impact decreasing average output 100-150mL weeks 8-9; ~50mL weeks 10-11; 16-20mL weeks 12-13; and 13mL this week. I now use one level 2 pad per day and will probably move to level 1 pads when my supply runs out.

I have attached a graph of leakage which I kept form week 3...shows the ups and downs.

 

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I had my surgery September of 2022. Use three to four pads a day. I have never leaked at night, now control mostly as long as I am sitting. My problems are mostly when standing. Still doing pt, Kegals are the big key. My recovery has been steady forward , every few months I notice improvement. It’s been a process for me. Frustrating at times but like others have said, hang in there. Don’t give up. Two things that I have noticed, staying hydrated helps tremendously, and taking a thirty minute walk also seems to help me. Hang in there and good luck.

 

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My urologist and physio also advised to keep hydrated 1.5-2L per day and gradually build up exercise. My op was late October 2023 and am now walking 4-6 km 3-5 days per week. I recognise the “spurt” triggers and hold on when these circumstances arise. I had OAB and medication at 6 weeks had a significant impact on overcoming incontinence. Down to one Level 2 per day leaking 10-20 ml per day and 0-2 at night. No longer having heavy leak days and am very mindful at not overexerting. Tabling and graphing daily leakage has helped me visualise progress and bad days.

 

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Hello, I had my prostate removed due to pca diagnosis in mid november of 2023, Im nearing the 3 month post surgeey mark, and although so fsr my psa is undetectable whoch is more important , the battle with incontinence is a tough one. Basicslly if I move around, bend over, or make any move at all I leak, and I have zero control. However at night or early evening ince Im at rest or sleeping I can tell when I need to go and still leak some but not vey much as I get up several times to use the bathroom pretty succesfully.
Im doing kegels and definitely have improved from my first 15-30 days post surgery but for the last 45 days seems like there has been zero progress. Anyone here have a similar experience and improved significantly with time alone, or any other method? Thanks in advsnce for anything that might help. Cheers

 

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Nelson,

I am in exactly the same situation post October 16 robotic prostate removal. doing kegals, dont leak at night or sitting down but leak a lot during activities. Trying to be optimistic and patient. Cheering you (us) on bro. Better than the alternative for sure. Peace out.

 

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It gets better, but it takes time. Keep on going with the Kegels and exercise and one day you'll notice an improvement, and from there on in every day it gets better, at least that's how it worked for me anyway.
Even drying my lefts after a shower I would leak. Anything bending down caused it.
15 months in I'm dry.
Hang in there guys.

 

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I was also advised to strictly limited coffee, alcohol and carbonated drinks especially cola drinks with caffeine.

Now I limit myself to one latte per day, no sofas, decaf coffee the rest of the time and rarely drink alcohol. Boring I know but it helps.

I notice that if I relent and say I have a half bottle of wine and one beer, I have increased incontinence next day especially if active.

 

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Skirk, I also gave up Caffine a few weeks ago and that sealed the deal and pretty much stopped the small amount I was getting.
I did also buy a Kegalhard device at the same time, so between the two I nailed it. I feel lucky. VERY lucky.
I tried a proper coffee the other day and it tasted the same, so I biffed it and made a Nespresso decaf. I use 2 pods
Well done mate on sorting it out though.
I won't quit wine!