Incontinence and arousal

[joe64]

Hello to all,

I'm about 3.5 post RP, 61 years old, I still have incontinence, I drip or leak a little less than once (25-ml) a day. . Because of where the disease was, my surgeon could only spare the nerves on the right side, as such, my expectation is that I will have so sort of ED issue. I will be seeing my urologist in two weeks, and I will be asking his input on this subject.

Here goes...

1- I've started noticing two things happening. For the last two weeks, at around the same time every night, I get, what can best be described as a semi-hard on, not fully flaccid, but it is noticeable to me. I'm doing anything, just doesn't on its own. Nothing I do can encourage it at this point, if you get my drift.

2 - If during the day, I have a sexual thought, my penis responds giving a sudden leak of pee.

For all I know, this is normal. Is anyone familiar with either or both of these things?

Thanks for your input

 

[darbas]

Hi Joe64. I came across this article on you tube today that may help answer your question.

 

[joe64]

Hi Joe64. I came across this article on you tube today that may help answer your question.

Thank you. That is an outstanding video. It had great information. It really helps me to understand what the heck is going on.

Since I have your ear. As you know, I'm continuing to do the pelvic floor exercises, as well generally exercising. This Wednesday will be 4 months, and 2 weeks, post-surgery. My need to get up in the middle of the night to get pee, is now between zero and one trip. This week, I noticed after getting out of bed, I forgot to go pee before going to the kitchen to make coffee. Things are definitely improving.

So, hang in there, keep doing what you are doing.

 

[darbas]

I am glad it helped and good to hear you are getting on top of it all. Strange enough I haven't had to worry about things at night.I haven't had to get up more than once at night since I stopped having a drink before bed. Mind you I don't go to bed until midnight every night. I actually went 7hrs last night before I had to go pee. Saying that I might have a small light at the end of the tunnel as last 2 days I have been able to get off the chair and get to the toilet before any major leaks. Walking is when I am at my best. Done a 9km walk yesterday without a leak but don't ask me to stand still I start leaking again.I still doing my pelvic Floor exercises and going back to the physio again today

 

[joe64]

I am glad it helped and good to hear you are getting on top of it all. Strange enough I haven't had to worry about things at night.I haven't had to get up more than once at night since I stopped having a drink before bed. Mind you I don't go to bed until midnight every night. I actually went 7hrs last night before I had to go pee. Saying that I might have a small light at the end of the tunnel as last 2 days I have been able to get off the chair and get to the toilet before any major leaks. Walking is when I am at my best. Done a 9km walk yesterday without a leak but don't ask me to stand still I start leaking again.I still doing my pelvic Floor exercises and going back to the physio again today

Wow! You're really putting in the kilometers walking. I think you're doing pretty good at this stage of your recovery. Bedtime makes a big impact on how often you need to get up. I'm in bed by 10 PM, as sleep by 11 PM, and up by 7 AM, these days. I'm retired now, but when I was working, I was in bed by 11, but up at 5:30.

I think that I shared this document before, but I can't recall if it was here or some other site. In any event, I found it very helpful in adjusting my expectations to a realistic timeline. I'm attaching it here. I hope you, or others, might find it useful.

 

[darbas]

Thanks for that. When I see how my incontinence is it seems different to others. At no time have I had the urgency to go to the toilet in fear of wetting myself. Mine had been constant leakage while standing and sometimes walking and the dreaded getting of the chair I had no control for that instance regardless of how full the bladder is at the time. That could be a few squirts to the blazer trying to empty.I have been walking alot as it is the only time I feel normal. I do archery for a sport where our targets are set up through the bush so we do a bit of walking there. So I decided to go out to the club and do a practice round with a couple of others. Pull the bow back leaks. Stop to pull arrows out Leah's until about the 6 th target where everything started to feel normal again with only minor leakage for next 16 targets. When finished sat down for about a half an hour then got up to leave had minor issue and jut went to toilet before I left just in case for half hour drive home. When I got home getting out of the car wasn't quite that pee free. So looks as if things are looking up. what a difference a week makes. My penis is now occasionally getting a feeling like an erection but not it just becomes firm not erect so blood flow is getting there.I am now 7 weeks post op.
P.S. just went to physio today and food shopping. You know the story 2 steps forward; well I just went 2 forward and a week back. Definitely a not a good day today. Its rusty bucket day for me again

 

[joe64]

In terms of incontinence, I never had that urgency either. I had a continuous drip and leak while standing or walking until around the 8-week mark. Sitting, I was leak free until I had to stand up from sitting, unless I consciously prepared to get up. It was the same getting out of the car, those first moments after getting out, I would have a quick spurt.

You're doing well and soon your recovery time, your setback after progress, will get shorter. It's all indicators that you're going in the right direction.

One of the things I like about that document is it reminds me that I'm on target. When you're living through this, days feel like weeks, and weeks feel like months. It's easy to fall into a rut and think it's never going to get better. You're improving, getting better, and you weeks and months to come, you'll see even more improvement.

BTW - That document was generated by Copilot, an AI chatbot. I asked it something like, "What is the expected post-surgery recovery progression of Prostatectomy". It was a more concise answer than anyone had given me.

 

[darbas]

It shows that I am pretty much mirroring what you went through just a couple of months between the 2 surgeries. It helps to talk to people who are going through and have gone through the same thing. Unfortunately, I am not retired and have to return to work in 2 weeks even though I only now work 3 days a week. You never know might go back to work after being off for 2 months and decide its time to retire especially if I find I am leaking too much still. Thanks for your help.

 

[joe64]

It absolutely helps to have someone talk to about what you are experiencing, who has gone through it themselves.

I can imagine it would be tough to return to work under the current conditions. Most people would think two months is a long time to be gone from work, but in this case, it's not enough. If possible, I'm sure you'd rather spend a lot more time with group archery.

I had worked at my company for 32 years, and I really enjoyed the first twenty or so years, but the company changed, and stress levels were off the scale. Peers, at my level, were having strokes and heart attacks. In my head, it was time to move to the next stage in life, while I still could enjoy what was left of it. These days, I hike, bike, volunteer my time and experience on a few different committees in my community, developing parkland and green spaces. As I've told many people, I retired from a job, maybe even a career, but I didn't retire from life, I just moved on. My only rule is that whatever that next thing is, it makes me happy.

 

[darbas]

I Would love to retire and not financial problem but working 3 days a week is enough to stop me going nuts at home as I live by myself.Yes do enjoy the archery which I go away camping ( in my campervan not tent that is) for the weekend once a month for inter club events and once a month at my own club and help keep the grounds and ranges in good condition when not shooting. Will be better when the leaks dry up and back to my old self.

 

[joe64]

Everything is better without leaks and drips. I'll share with you what I have with many people regarding retirement. The time to start building your retirement plans is now. I'm not talking about fiscal planning, but life planning. I loved the interaction with all the people I met at work. Now, I'm learning to meet people outside the work world. For me, it's not easy, but invariably, I pursue those things that are hard for me to do.

I've had co-workers who consider retirement, like an extended vacation, spending a lot of time on the couch, in front of the TV. This usually leads to depression. Idle hands are often accompanied by minds that dwell on the "what if's" or "I should have" of life, which is not good. Don't get me wrong, I do kickback watching TV at or around dinnertime to relax, but my days are packed with activities.

Discover your passions and pursue them. Worse case, you'll discover that it's not for you, and you'll move on. As we get older, we tend to become set in our ways, I know I'm like that if I don't pay attention. It's funny, after I retired, people asked what I was doing with all my time. I had to tell them, I'm so busy, I have to make time to sit down and do nothing, my days are packed, but mostly with stuff I really want to do. Painting windowsills is not high on my list. LOL

It's important to live life without the burden of regrets about the things we didn't do or say.

 

[darbas]

Hi Joe64 , how is your recovery coming along? I Just returned to work this week and has not fun. Monday which I didn't work was probably my best day yet as I only leaked about 50mls for the day. Thats where the good news stops. Back at work first day 300ml second day worst ever over 500ml even though I thought it didn't feel as if it didn't leak as much. I have been using an external catheter and leg bag at work as it gives an exact amount of leakage. These external catheters have been the best thing I have bought regarding leakage as I don't have to worry about the number of shields I need for the day . I don't even feel as if I am wearing them. Had my fist PSA since my surgery and informed <.01 which I was told is classified undetectable. Now just need this leakage to stop

 

[joe64]

Hi Darbas,

I was thinking about you yesterday, wondering how things were going. Your PSA result is good news.

I figured returning to work was going to be tough. Try to be mindful of how much and what you are drinking. Caffeine is a diuretic. How does the external catheter attach? I'm guessing from the name, it doesn't in you, but over like a sheath. At least you have found a workaround as your body continues to heal. While 500ml is a lot, you're on your feet for many hours at a time. On average, men urinate, 1800ml per day. On the upside, you can get a solid measure of how much you're leaking and compare progress over time.

As for me, some days I feel like I've had very little to no leakage and have great control all day. Yet other days, or more so late in the day, I get these little spurts for no reason. I'm pretty sure it is related to what exercises I did that morning. I've switched to using leakproof washable briefs. My Urologist put me on 100mg of Viagra to increase the blood flow to the nerves. I've been taking it before bed, every other night, as it gives me a slight headache. I'm not sure if it's doing anything yet, but I think it might be doing something.

Today is 5 months post-surgery, and I'm going for my second PSA test today. I must admit, I'm a little nerve about it. Of course, I am hoping for no change. I really don't want to need additional treatment. I'm sure it'll be fine...

 

[darbas]

Hi Joe64
Its good to see how far you have come from our first chat. My urologist was going to give me Viagra Aswell but told him that wasn't my concern at the moment and just wanted to concentrate on my leakage first. Regards to work I am on my feet all day and picking up equipment and doing a lot of bending down and up, a perfect pump action for the bladder. I only drink water since the surgery. Even though I am drinking heaps through the day I think I should be upping my intake since back at work to compensate for all the sweat I am loosing as I can see how dark my urine is in the bag. The external catheter is like a condom with a small tube on the end to connect to the leg bag. I still wear the absorbent shields just incase of leakage of the catheter or tub comes out as it did the first time I used it. I keep in touch ,hopefully I will be able to duplicate you recovery as you have come a long way in 5 months

 

[darbas]

Hi Joe64
Its been a few weeks since our last chat. How's your progress going with your leakage and erectile function. It would be about 6 months now for you and 3 months now for me. As I said previously, I am back at work and that was when I started to notice a change. I could actually get up after sitting and laying down without leakage. As I never had problems while sleeping, I no longer wear pads to bed because I can get up with no problems and dont have to worry about leakage for about an hour of getting out of bed. I feel normal again for that period. When at work as I have mentioned, I wear an external catheter and bag as this is when I leak the most. But when I get home, I rest for about 2 hrs then remove the catheter and bag and dont even use a pad for the rest of the night. Again, this feels a bit of normality once again. Then something changed again when I was at home for the weekend and resting, I had no leakage at all for 2 days and only very minor leakage at all for the other 2 days when doing some yard work. But that changed again when back at work again where I leak about 200mls (6.7 ounces) only while I am at work. So I am finally seeing light at the end of the tunnel. As far as my erectile function goes it doesn't. It just like a penis shaped sponge and doesn't even get any firmness at all which makes it hard to put on the external catheter. This part doesn't bother me at my age anyway and I will see what can be done once I am 100% continent again. Our chats have helped me get through my earlier stages of this shit as I could also follow your progress as you were only a few months difference between us. I hope you have made good progress since last chat. You would be coming into warmer months now and be able to be more active whereas we are going towards winter but nowhere as cold as yours so I can still be active during the day.How Did your Second PSA test go

 

[joe64]

Hi Darbas,

It's nice to hear that you are starting to see positive progress. We are lucky, not everyone has our progress. My last PSA Ultra-Sensitive test came back at 0.007, which is great. Yahoo!

As for progress, leakage wise, on days when I've been continually active, I can go all day, without much concern until around 4 or 5 o'clock, if I'm still on my feet, preparing dinner and cooking, I start to get a little leakage. While I'm working in the yard, or out about town, I often do not need to pee for 3-hours, which is better than I was before surgery.

On the erectile side, nothing that would poke someone's eye out, but there is something going on. In the evening, I've noticed I sometimes go from a limpness to a semi-firm, not hard, but firmer. I've also started to notice increased sensitive in the skin of my penis. This all seems to happen of its own accord around 8 o'clock at night. If I try to initiate a response, I don't get an erection, but a spurt of pee. I'm guessing, my body is still trying to get the wiring worked out. My doctor prescribed Sildenafil 100 mg (Viagra), which I've been taking at night every other day. I get side effects if I take it every day. The side effects I get are dizziness and a violet or blueish tint to my vision. With that said, I have noticed what can best be described as how a bicep muscle might feel the day after a workout at the gym, but instead of the bicep, it is the penis shaft.

Like you, it's not a big deal to me, but it would be nice. I did some research and from what I've read, I shouldn't expect to regain much erectile function, until around 6 to 12 months, although it can be as far out as 18 months. I honestly don't expect to get full function back, as they could only the nerves on the right side.

Oddly, walking, running and bike riding, even jumping up and down, I do not leak, but what I have found increases the opportunity for leaking is eating foods that cause gas. Apparently, my wiring for farting and peeing has not completely recovered yet.

Overall, I'm happy with the results so far. Yes, there is light at the end of the tunnel, it's just a long tunnel with speed restrictions.

 

[darbas]

Hi Joe64
Its good to see your PSA is staying low,I have another 8 weeks before my next test. Hope my recovery goes as well as yours. You have come a long way since your first post. It has been good to find this forum for support and help while we all go through this Rocky Journey.I have to admit, I am so glad I went for the external catheter and leg bag as it was a game changer for me and for anyone who has a lot of leakage and still trying to work out what pads or pull ups to use they should really consider it.
I will see how your progress is after my next PSA check. Hopefully our chats can give others a lift knowing how we have been and our progress because I honestly thought at the beginning there was no end to the leaking

 

[joe64]

Thank you. I can't imagine how I would manage if I had to return to work, as early as many do. At the time of my first post, I was depressed and disappointed with the leakage, I was beside myself. I even considered that I made a mistake by getting the surgery.

Of course, hindsight is 20, 20. I know now that it was the right decision for me. This site has been a tremendous source of comfort and information.

All the best for your next PSA result.