Looking for men who recently had a laparoscopic radical prostatectomy

Posted by bill1965 @bill1965, Aug 24, 2023

Had surgery 8/14 having a hard time dealing with the incontinence. Catheter removed 8/21. I know it’s early but just wondering if others are having a difficult time adjusting and how long it took to get back to normal urinate functions. Any advice to help the process along would be much appreciated.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

@tomf

I highly recommend asking your doctor to prescribe a condom catheter. It is easy to wear, not that uncomfortable and you will not leak into your clothing. I use it when I know I will be away for a long period of time and can't get to a bathroom easily. They have leg bags that are hard to notice under long pants and smaller thigh bags that are hard to notice under shorts. When the time is right, you can empty whatever accumulated in the leg bag and then continue on with your activity. Yes, it is kind of a 'crutch" meaning it doesn't teach us to hold our urine, but some days you just have to have freedom of movement over longer blocks of time. My supplies are covered by my insurance on a monthly basis and the condom part is disposable. Just make sure you figure out the correct size/fit or you will likely leak. The instructions are easy to follow in that respect.

Jump to this post

Interesting bud. I am really working hard on holding the pee and doing the dinky hold exercises all day long now. As of yesterday, I could feel it getting stronger but I love drinking coffee and lots of water. I am in Thailand and will
see if there are some here. My friend Dave M who went through this 3 years ago worked hard on the exercises and he only wears a little pad only if he is goig to the gym or going to be gone all day. He kept at the exercics and it took a few months but he about licked the problem. Thanks so much Dave D.

REPLY
@tomf

I had my prostate removed with a DaVinci robot in February of this year. The pathology report said they got everything, all the extraneous things they removed had no cancer and the prostate margins were clear, so I have had no follow up treatment of radiation or drugs so far. My cancer was Stage Two. My Gleason was 4+3=7 and my PSA was above 4 once but had been rising steadily for years. My first follow up PSA was .014.

Jump to this post

Mine was done on Aug. 3rd. Almost a mirror of your tom. I feel the Surgeon certainly saved my life. I am taking a bottle of wine tomorrow to him. He gave me some 25mg. Minapine pills. I take 1 after breakfast and noticed that by 2 everyday, I pee incessantly and it comes on quick. He just told me I could take another at 5 so 2 total in a day. I do the dinky exercises all day long. I have a follow up blood work in 3 months and if PSA is still at 0 no action needed but if it bumps up any a PMSA Pet Scan will reveal if any is inside where the prostate was or any spots outside ot where it was. If inside, Lupron, if outside targeted Beam Radiation but he thinks I will be fine.

REPLY
@bill1965

Thanks for the info. Did you sometimes have a good amount of leakage and others not bad? Were your lymph nodes removed? I had Gleason 9’s. Not sure if I have to have radiation to follow up as well until I go back on 9/14.

Jump to this post

Yes! Some days not much at all, but as evening came there was leaking. They say your muscles just get tired by the end of the day. Other days lots of leaking. My Gleason scores were 8. They took 14 lymph node’s. 2 had small traces of cancer near the neck of my bladder. I’m actually at the Mayo today for my first PSA blood test. Also we are going to talk with a Radiation Oncologist. So we will see how today goes. Just stay positive. It definitely gets better every day. It may not seem like it, but it does.

REPLY
@ddun1953

I had the surgery on Aug. 3, at home now, all tubes gone, Cancer gone too per the Lab post surgery. I cut back on coffee too and only 1 Leo beer large one in Thailand not my usual 2. I get up many times in the night too so the diaper is not even that wet. Yesterday, half the day was good but after 3 or so, I have to get to the toilet within 10 seconds or pee is all over. I can go every 4 or 5 minutes too. I take a pill pee to stop it. Some days it does and others, NOT. I drink a lot of water. I pee a lot. It is hard to go out. I have a little pad when we do go out but I am stressed most ot the time out. If I roll over on my right when I sleep it hurts so I can't do that. I do those damn dinky exercises all day long too. WE will never be normal like before ever. That is what others who had it done some years back. Dinky looks dead too. This last month was the hardest and most painful of my life. I am trying to forget it now. I don't have to do anymore Lupron nor any radiation either. In 3 months, I do a new blood work and if PSA remains at 0 and does not bump up, no need for a PMSA Pet Scan or Lupron or radiation. I looked at the Hans Table and recurrence is pretty low for me. What word would I use to describe this last month, AGONY but it is slowly improving. Today, slept a lot but did start walking 2 days ago and that felt good but each day, I had to stop and just pee real fast under any tree I could find.

Jump to this post

I had rlp in September 2018 with Gleason score 10 and still don't have good urine control. I will admit that i have not been religious about doing Kegels or other exercises to build up sphincter strength. At first I used condom catheter with a leg bag and that worked pretty well as long as you are clean and dry when you roll the condom on and expect to change it at least every 24 hours. urine will make the glue not stick anymore and if the hose kinks it is trouble, Then I tried a clamp which has worked well for almost five years. It can be annoying sometimes but you get used to it and it lets my live my life. I have traveled all over the world and no one would know that i am incontinent. I still need pads because there is still some leakage but usually one will last all day and i' don't wear the clamp at night. I have noticed that i leak a lot less when sleeping or sitting. I just bought the book "From incontinence to continence in 10 weeks" and am going to try to eliminate the clamp.

REPLY
@pete555947

I had rlp in September 2018 with Gleason score 10 and still don't have good urine control. I will admit that i have not been religious about doing Kegels or other exercises to build up sphincter strength. At first I used condom catheter with a leg bag and that worked pretty well as long as you are clean and dry when you roll the condom on and expect to change it at least every 24 hours. urine will make the glue not stick anymore and if the hose kinks it is trouble, Then I tried a clamp which has worked well for almost five years. It can be annoying sometimes but you get used to it and it lets my live my life. I have traveled all over the world and no one would know that i am incontinent. I still need pads because there is still some leakage but usually one will last all day and i' don't wear the clamp at night. I have noticed that i leak a lot less when sleeping or sitting. I just bought the book "From incontinence to continence in 10 weeks" and am going to try to eliminate the clamp.

Jump to this post

I do those exercises so much, you would think it would take some but it is early still. I take those pills called Minapines and they are real good, 25mg. I also notice laying or sitting, I am good to not pee all over. I just have to think making efforts in what I call the dinky exercises as I try to make it light. I don't know about clamps but I mean my weiner is small after some Lupron shots and seems damn dead too. It is sad as I was well endowed too but now a midget that does not move and spills his drinks all over the place. hehe I am happy they got it all I hope so the other outcome, I would not be joking at all. I will say this has been the most horrific and painful month of my life.

REPLY

You need a sense of humor about this stuff and it seems that you have one. My Dr told my wife that it is necessary to cut some of the urethra out with the prostate so dickey gets shorter, Mine is dead too. We need to play the hand we are dealt and be glad we are still alive. It is frustrating to not be able to control the flow.

REPLY

I hear ya! I think the incontinence is the worst of it. My whole summer just flew by, didn’t even realize that Monday is Labor Day. Some days I go through two pads at work and others 4. No rhyme or reason. Glad you had a good surgeon. Hopefully I did too. Hopefully I won’t need radiation. I’ve been through enough!

REPLY
@ddun1953

I do those exercises so much, you would think it would take some but it is early still. I take those pills called Minapines and they are real good, 25mg. I also notice laying or sitting, I am good to not pee all over. I just have to think making efforts in what I call the dinky exercises as I try to make it light. I don't know about clamps but I mean my weiner is small after some Lupron shots and seems damn dead too. It is sad as I was well endowed too but now a midget that does not move and spills his drinks all over the place. hehe I am happy they got it all I hope so the other outcome, I would not be joking at all. I will say this has been the most horrific and painful month of my life.

Jump to this post

I just noticed you said you’re seeing a radiation oncologist. Do you have to have radiation?

REPLY
@pete555947

I had rlp in September 2018 with Gleason score 10 and still don't have good urine control. I will admit that i have not been religious about doing Kegels or other exercises to build up sphincter strength. At first I used condom catheter with a leg bag and that worked pretty well as long as you are clean and dry when you roll the condom on and expect to change it at least every 24 hours. urine will make the glue not stick anymore and if the hose kinks it is trouble, Then I tried a clamp which has worked well for almost five years. It can be annoying sometimes but you get used to it and it lets my live my life. I have traveled all over the world and no one would know that i am incontinent. I still need pads because there is still some leakage but usually one will last all day and i' don't wear the clamp at night. I have noticed that i leak a lot less when sleeping or sitting. I just bought the book "From incontinence to continence in 10 weeks" and am going to try to eliminate the clamp.

Jump to this post

I would like to read that book as well. I looked on google but didn’t see that book at all. Do you know who wrote it?

REPLY
@bill1965

I would like to read that book as well. I looked on google but didn’t see that book at all. Do you know who wrote it?

Jump to this post

I got it on my Kindle but here it is
Life After Prostatectomy and Other Urological Surgeries: 10 Weeks from Incontinence to Continence
by Vanita Gaglani

REPLY
Please sign in or register to post a reply.