slimjimbest, new to the forum

[slimjimbest]

So glad to have found you all!
New stage in my (slowly!) upward trending UI journey I started in June 2019 after successful RARP. PSA still 0!
Father died of 4th stage prostate cancer at 73. I turn 73 this year.

I feel very blessed to be alive and dealing with a relatively small leakage problem. But like all of you, I want to learn as much as I can from those that have figured this stuff out and use the community knowledge to continue to fight for the best quality of life I can manage.

Last couple years I was having trouble managing scrotum skin fragility from a 10ml/day leakage. Even with a Depends light pad (can hold 25ml), held in place with a Speedo bathing suit, there was enough residual urine to degrade the skin. If I did a multi-hour bike ride or multi-day backpack trip I would often wear a painful lesion in the skin that would take 7-10 days to heal. I have taken to washing thoroughly every night, applying Aquaphor for protection during the day, and using cotton underwear with a cloth absorbent pad to give it a rest at night. I leak only 1-2ml sleeping on my back and getting up a couple times to urinate. (gosh it feels good to talk TMI in a group I think I can feel safe with!)

But now I think I'm down to a few milliliters leakage per day for some reason (I've tracked leakage pretty intensely in the past but stopped a couple years ago when it was clear I had plateaued. I'll be happy to share the method and results down the line. So I'll re-measure at some point but it's a bit of a bother). I've been able to switch from the Depends, which were always a bit rough on my skin, to re-usable fleece-lined pads for women. So much softer! Nevertheless there is still residual urine to deal with.

So my newbie question to this community is,
"What have y'all learned about maintaining healthy scrotum skin, at low levels of leakage, for a pretty active guy?"

With much gratitude, Jim

 

[darbas]

So glad to have found you all! have your
comcer019 after successful RARP. PSA still 0!
Father died of 4th stage prostate cancer at 73. I turn 73 this year.

I feel very blessed to be alive and dealing with a relatively small leakage problem. But like all of you, I want to learn as much as I can from those that have figured this stuff out and use the community knowledge to continue to fight for the best quality of life I can manage.

Last couple years I was having trouble managing scrotum skin fragility from a 10ml/day leakage. Even with a Depends light pad (can hold 25ml), held in place with a Speedo bathing suit, there was enough residual urine to degrade the skin. If I did a multi-hour bike ride or multi-day backpack trip I would often wear a painful lesion in the skin that would take 7-10 days to heal. I have taken to washing thoroughly every night, applying Aquaphor for protection during the day, and using cotton underwear with a cloth absorbent pad to give it a rest at night. I leak only 1-2ml sleeping on my back and getting up a couple times to urinate. (gosh it feels good to talk TMI in a group I think I can feel safe with!)

But now I think I'm down to a few milliliters leakage per day for some reason (I've tracked leakage pretty intensely in the past but stopped a couple years ago when it was clear I had plateaued. I'll be happy to share the method and results down the line. So I'll re-measure at some point but it's a bit of a bother). I've been able to switch from the Depends, which were always a bit rough on my skin, to re-usable fleece-lined pads for women. So much softer! Nevertheless there is still residual urine to deal with.

So my newbie question to this community is,
"What have y'all learned about maintaining healthy scrotum skin, at low levels of leakage, for a pretty active guy?"

With much gratitude, Jim

Hey mate
I am still leaking a fair bit 10 weeks after my prostrate removal. Evan with the heaviest pads I would still feel moist around the family jews. So, I was a bit concerned when I returned to work about leakage and moisture down there, so I tried the external catheter. Best thing ever and I don't feel moist down there anymore and dont have to worry about changing pads, Where I dont experience any of your problems It might be an idea to try the external catheter and keep yourself dry.

 

[slimjimbest]

Hey mate
I am still leaking a fair bit 10 weeks after my prostrate removal. Evan with the heaviest pads I would still feel moist around the family jews. So, I was a bit concerned when I returned to work about leakage and moisture down there, so I tried the external catheter. Best thing ever and I don't feel moist down there anymore and dont have to worry about changing pads, Where I dont experience any of your problems It might be an idea to try the external catheter and keep yourself dry.

Congrats on finding a way to manage, even while at work!

You and I are at very different stages in this journey. I tracked leakage by weighing my pads daily on a postal scale. Reading the literature, I think I was on the very leaky end of the range of experiences people have. At 8 -10 weeks I was blowing through 3 maxi pads/day, each able to hold 160ml or about 500ml/day. Check out the graph. It starts on the left at 9 weeks (#grams = #ml). By week 40 I'm down to less than 30ml/day, or one shot-glass' worth (unsavory comparison, sorry!). Still not able to use a light pad (20-25ml/pad). That came later.

Hopefully you'll come down too. I put in about 10,000 Kegels and worked with a pelvic floor physical therapist and just couldn't bring it down any further. I stopped doing the Kegels and PT after 2 or 3 years and accepted my fate. But it actually seems to slowly continue to improve 6 years out.

 

[slimjimbest]

By the way, when I had a catheter in at the beginning I developed severe abdominal cramps. 10 minutes each at a pain level 10. I had 30 of them and went to the ER. Had no idea how I'd survive that! The meds calmed them but as soon as I could pee on my own I wanted that thing out. So glad it's working for you!

 

[joe64]

Hello Slimjimbest,

Glad you found us. Congratulations on your milestone. I had RARP surgery in November 2024. I'm 61 years old, and like you, my father died of liver cancer, which was the result of Metastasized prostate cancer.

Tomorrow makes five months post-surgery. While my leaking has gotten better, I'm not 100%. I was doing like you, weighing the pads before and after to get a measurement of leakage. I stopped measuring at the beginning of month 4, since I felt like there was no point, as I was getting the same data every day. I'm leaking between 3 and 5 ml a day. I'm using washable absorbent underwear, and I find I leak a bit more after 5 PM, which is an improvement, from 3 PM. It seems like on days I Physically push myself like a particularly hard workout, that evening is a leak festival.

I have not had the scrotum skin issue yet, but now that it is spring here in the States, I'm just getting back to cycling and hiking, I have a feeling this might be a concern. I know this is going to sound like a stupid question, but am I right in thinking that I would need to speak to a dermatologist about this condition? I know that I should have tons of humility at this point, but I don't look forward to needing to talk to a dermatologist about such a thing.

Wow, 10k Kegels! I only manage to get 30 done a day. With that said, you hit on something I've been thinking about of late. Will I have to do these Kegels forever, or is there a point where I'll see diminished returns?

 

[slimjimbest]

Hello Slimjimbest,

Glad you found us. Congratulations on your milestone. I had RARP surgery in November 2024. I'm 61 years old, and like you, my father died of liver cancer, which was the result of Metastasized prostate cancer.

Tomorrow makes five months post-surgery. While my leaking has gotten better, I'm not 100%. I was doing like you, weighing the pads before and after to get a measurement of leakage. I stopped measuring at the beginning of month 4, since I felt like there was no point, as I was getting the same data every day. I'm leaking between 3 and 5 ml a day. I'm using washable absorbent underwear, and I find I leak a bit more after 5 PM, which is an improvement, from 3 PM. It seems like on days I Physically push myself like a particularly hard workout, that evening is a leak festival.

I have not had the scrotum skin issue yet, but now that it is spring here in the States, I'm just getting back to cycling and hiking, I have a feeling this might be a concern. I know this is going to sound like a stupid question, but am I right in thinking that I would need to speak to a dermatologist about this condition? I know that I should have tons of humility at this point, but I don't look forward to needing to talk to a dermatologist about such a thing.

Wow, 10k Kegels! I only manage to get 30 done a day. With that said, you hit on something I've been thinking about of late. Will I have to do these Kegels forever, or is there a point where I'll see diminished returns?

Thanks, joe64! I hope your RARP has been completely successful in eliminating the cancer.
Seems like we're quite aligned (except you hit this point at 5 months and it took me 6 years!).

• genetic (sorry you lost your father too; I bet they are damn glad the science and medicine has come so far to save us)
• active lifestyle
• 3-5ml/day leakage
• exercise-dependent
• end-of-day fatigue

My derms kept saying "Get a moisture barrier on it." I finally was desperate enough. Any petrolatum product seems to work for me (41%). Walgreens has one. My Drs recommended Aquaphor. Essentially bag balm, I guess. It doesn't seem to mess up my undies. Hesitant at first, now I'm all in. On a hot day or lots of exercise I'll apply twice a day. No real need to see a derm, I think. Common sense I was slow to take in.

I have lost my embarrassment around this. UI. ED. I'm alive! It's liberating for me. Talking freely has been a supportive move that helps other men on the early end of this embarrassing thing. They have been appreciative because it feels like there really isn't the space to talk about it with family and others. That said, I've still been avoiding scrotum exams with my female primary care doc. We just talk about it. Still room for growth there!

What is the washable absorbent underwear product you use?

Kegels. I was doing 10x1sec holds, 10x10sec, and 10 quickies = 30 per set. I aspired to do 3 sets per day, 21 per week. I averaged about 10/week. See graph: 10sets/week x 50 weeks x 30 kegels/set = 15,000! I was doing them 2 months before surgery and started back up 4 weeks post surgery. So that's another 44 weeks before this graph and another 50 weeks after that. So closer to 50,000 Kegels! PT had me get in the habit of throwing a Kegel every time I did something where I couldn't control the leak. Sneezes. Laughs. Coughs. BMs. Quick side steps. Lifts. Core contractions (I climb). I never really got it nailed but it helped. Then I gave up at 3 years out because it seemed nothing I did brought my leakage down below 15ml/day. I tracked through 140 weeks. I think I noticed reduced leakage 4 years out so I measured for a month and found I was at <10ml/day. Now I think I'm at 3-5ml/day and haven't done regular Kegels for 3 years. Thought I might add them back into my daily abs workout as it's central to the pelvic floor that the core canister sits on top of. Why not?

Sorry for the long response but it feels good to share this. I know there is so much wisdom out here in the field and I'm so appreciative of the NAfC to create a forum where we can share it. And appreciative of all those willing to share. There is some really good Masters capstone or even PhD-quality qualitative data in this forum. I hope somebody takes advantage of it!

 

[joe64]

Thanks, joe64! I hope your RARP has been completely successful in eliminating the cancer.
Seems like we're quite aligned (except you hit this point at 5 months and it took me 6 years!).

• genetic (sorry you lost your father too; I bet they are damn glad the science and medicine has come so far to save us)
• active lifestyle
• 3-5ml/day leakage
• exercise-dependent
• end-of-day fatigue

My derms kept saying "Get a moisture barrier on it." I finally was desperate enough. Any petrolatum product seems to work for me (41%). Walgreens has one. My Drs recommended Aquaphor. Essentially bag balm, I guess. It doesn't seem to mess up my undies. Hesitant at first, now I'm all in. On a hot day or lots of exercise I'll apply twice a day. No real need to see a derm, I think. Common sense I was slow to take in.

I have lost my embarrassment around this. UI. ED. I'm alive! It's liberating for me. Talking freely has been a supportive move that helps other men on the early end of this embarrassing thing. They have been appreciative because it feels like there really isn't the space to talk about it with family and others. That said, I've still been avoiding scrotum exams with my female primary care doc. We just talk about it. Still room for growth there!

What is the washable absorbent underwear product you use?

Kegels. I was doing 10x1sec holds, 10x10sec, and 10 quickies = 30 per set. I aspired to do 3 sets per day, 21 per week. I averaged about 10/week. See graph: 10sets/week x 50 weeks x 30 kegels/set = 15,000! I was doing them 2 months before surgery and started back up 4 weeks post surgery. So that's another 44 weeks before this graph and another 50 weeks after that. So closer to 50,000 Kegels! PT had me get in the habit of throwing a Kegel every time I did something where I couldn't control the leak. Sneezes. Laughs. Coughs. BMs. Quick side steps. Lifts. Core contractions (I climb). I never really got it nailed but it helped. Then I gave up at 3 years out because it seemed nothing I did brought my leakage down below 15ml/day. I tracked through 140 weeks. I think I noticed reduced leakage 4 years out so I measured for a month and found I was at <10ml/day. Now I think I'm at 3-5ml/day and haven't done regular Kegels for 3 years. Thought I might add them back into my daily abs workout as it's central to the pelvic floor that the core canister sits on top of. Why not?

Sorry for the long response but it feels good to share this. I know there is so much wisdom out here in the field and I'm so appreciative of the NAfC to create a forum where we can share it. And appreciative of all those willing to share. There is some really good Masters capstone or even PhD-quality qualitative data in this forum. I hope somebody takes advantage of it!

View attachment 43

I agree, it really helps to have someone to share this stuff.

Yes, it was a complete success. The place they found the cancer was in the prostate itself, and it had negative margins. My first two PSA's were 0.006 and 0.007.

I bought the underwear off of Amazon and I'm very happy with them. They are so much more comfortable than the pads and pull-ups.

REELINDRY Washable Men’s... https://www.amazon.com/dp/B0DFW8HRK1?ref=ppx_pop_mob_ap_share

 

[slimjimbest]

Thanks, joe64! I hope your RARP has been completely successful in eliminating the cancer.
Seems like we're quite aligned (except you hit this point at 5 months and it took me 6 years!).

• genetic (sorry you lost your father too; I bet they are damn glad the science and medicine has come so far to save us)
• active lifestyle
• 3-5ml/day leakage
• exercise-dependent
• end-of-day fatigue

My derms kept saying "Get a moisture barrier on it." I finally was desperate enough. Any petrolatum product seems to work for me (41%). Walgreens has one. My Drs recommended Aquaphor. Essentially bag balm, I guess. It doesn't seem to mess up my undies. Hesitant at first, now I'm all in. On a hot day or lots of exercise I'll apply twice a day. No real need to see a derm, I think. Common sense I was slow to take in.

I have lost my embarrassment around this. UI. ED. I'm alive! It's liberating for me. Talking freely has been a supportive move that helps other men on the early end of this embarrassing thing. They have been appreciative because it feels like there really isn't the space to talk about it with family and others. That said, I've still been avoiding scrotum exams with my female primary care doc. We just talk about it. Still room for growth there!

What is the washable absorbent underwear product you use?

Kegels. I was doing 10x1sec holds, 10x10sec, and 10 quickies = 30 per set. I aspired to do 3 sets per day, 21 per week. I averaged about 10/week. See graph: 10sets/week x 50 weeks x 30 kegels/set = 15,000! I was doing them 2 months before surgery and started back up 4 weeks post surgery. So that's another 44 weeks before this graph and another 50 weeks after that. So closer to 50,000 Kegels! PT had me get in the habit of throwing a Kegel every time I did something where I couldn't control the leak. Sneezes. Laughs. Coughs. BMs. Quick side steps. Lifts. Core contractions (I climb). I never really got it nailed but it helped. Then I gave up at 3 years out because it seemed nothing I did brought my leakage down below 15ml/day. I tracked through 140 weeks. I think I noticed reduced leakage 4 years out so I measured for a month and found I was at <10ml/day. Now I think I'm at 3-5ml/day and haven't done regular Kegels for 3 years. Thought I might add them back into my daily abs workout as it's central to the pelvic floor that the core canister sits on top of. Why not?

Sorry for the long response but it feels good to share this. I know there is so much wisdom out here in the field and I'm so appreciative of the NAfC to create a forum where we can share it. And appreciative of all those willing to share. There is some really good Masters capstone or even PhD-quality qualitative data in this forum. I hope somebody takes advantage of it!

View attachment 43

So glad to have found you all!
New stage in my (slowly!) upward trending UI journey I started in June 2019 after successful RARP. PSA still 0!
Father died of 4th stage prostate cancer at 73. I turn 73 this year.

I feel very blessed to be alive and dealing with a relatively small leakage problem. But like all of you, I want to learn as much as I can from those that have figured this stuff out and use the community knowledge to continue to fight for the best quality of life I can manage.

Last couple years I was having trouble managing scrotum skin fragility from a 10ml/day leakage. Even with a Depends light pad (can hold 25ml), held in place with a Speedo bathing suit, there was enough residual urine to degrade the skin. If I did a multi-hour bike ride or multi-day backpack trip I would often wear a painful lesion in the skin that would take 7-10 days to heal. I have taken to washing thoroughly every night, applying Aquaphor for protection during the day, and using cotton underwear with a cloth absorbent pad to give it a rest at night. I leak only 1-2ml sleeping on my back and getting up a couple times to urinate. (gosh it feels good to talk TMI in a group I think I can feel safe with!)

But now I think I'm down to a few milliliters leakage per day for some reason (I've tracked leakage pretty intensely in the past but stopped a couple years ago when it was clear I had plateaued. I'll be happy to share the method and results down the line. So I'll re-measure at some point but it's a bit of a bother). I've been able to switch from the Depends, which were always a bit rough on my skin, to re-usable fleece-lined pads for women. So much softer! Nevertheless there is still residual urine to deal with.

So my newbie question to this community is,
"What have y'all learned about maintaining healthy scrotum skin, at low levels of leakage, for a pretty active guy?"

With much gratitude, Jim

I agree, it really helps to have someone to share this stuff.

Yes, it was a complete success. The place they found the cancer was in the prostate itself, and it had negative margins. My first two PSA's were 0.006 and 0.007.

I bought the underwear off of Amazon and I'm very happy with them. They are so much more comfortable than the pads and pull-ups.

REELINDRY Washable Men’s... https://www.amazon.com/dp/B0DFW8HRK1?ref=ppx_pop_mob_ap_share

Congrats on the surgery! And thanks for the tip. I've just ordered.

 

[darbas]

By the way, when I had a catheter in at the beginning I developed severe abdominal cramps. 10 minutes each at a pain level 10. I had 30 of them and went to the ER. Had no idea how I'd survive that! The meds calmed them but as soon as I could pee on my own I wanted that thing out. So glad it's working for you!

Hi slimjimbest
I think people have got the wrong idea as to what an external catheter is. It is basically like a condom with a tube coming of the top of it which is then connected to the leg bag. Its nothing like that horrid thing they jammed up through the eye of you dick they gave us after surgery

 

[slimjimbest]

Hi slimjimbest
I think people have got the wrong idea as to what an external catheter is. It is basically like a condom with a tube coming of the top of it which is then connected to the leg bag. Its nothing like that horrid thing they jammed up through the eye of you dick they gave us after surgery

Thanks. I was confused.

 

[slimjimbest]

Incontinence data for one man's post-RARP journey.

[Measured by weighing pads on a postal scale every day.]

Seeing the variation over the first 18 months was useful to relate my activity to leakage. I learned what would set it off (injury, intensity of exercise, fatigue, certain types of exercise). It was also clear that I was not improving as fast as the normal rates given in the literature.


To smooth out the data and reduce the noise of daily variation, I started averaging across a week:



Over time when my leakage rate had flattened out, I was desperate to see improvement. To get better resolution I changed the scale from 100s of ML to 10s of ML.



I couldn't see the pattern so I started doing a 10-week rolling average ("What's the average at a particular point of the last 10-weeks of averages?"). That revealed that I was actually improving a bit week by week and that my 100,000 Kegels weren't in vain!




Finally, at nearly 3 years out I said enough is enough and gave up hope of ever getting to zero:






However, now at 6 years out I think it's time to measure again because I think I may have dropped from 10-12 ML/day to 3-5 ML/day. Can't wait to do a controlled measure!

 

[slimjimbest]

Hello Slimjimbest,

Glad you found us. Congratulations on your milestone. I had RARP surgery in November 2024. I'm 61 years old, and like you, my father died of liver cancer, which was the result of Metastasized prostate cancer.

Tomorrow makes five months post-surgery. While my leaking has gotten better, I'm not 100%. I was doing like you, weighing the pads before and after to get a measurement of leakage. I stopped measuring at the beginning of month 4, since I felt like there was no point, as I was getting the same data every day. I'm leaking between 3 and 5 ml a day. I'm using washable absorbent underwear, and I find I leak a bit more after 5 PM, which is an improvement, from 3 PM. It seems like on days I Physically push myself like a particularly hard workout, that evening is a leak festival.

I have not had the scrotum skin issue yet, but now that it is spring here in the States, I'm just getting back to cycling and hiking, I have a feeling this might be a concern. I know this is going to sound like a stupid question, but am I right in thinking that I would need to speak to a dermatologist about this condition? I know that I should have tons of humility at this point, but I don't look forward to needing to talk to a dermatologist about such a thing.

Wow, 10k Kegels! I only manage to get 30 done a day. With that said, you hit on something I've been thinking about of late. Will I have to do these Kegels forever, or is there a point where I'll see diminished returns?

BTW, how do you know you are leaking 3-5 ML/day. That's very specific. How are you measuring?