Incontinence After Prostatectomy Surgery

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@Russ, Be careful with the cycling, I've read where you shouldn't ride a bike for at least 10 weeks, but check with your doctor. When sitting down, cycling or otherwise, you are putting enough pressure down there to assist in the the only sphincter left still working. Same thing happened with me, sitting was always pretty good, moving around is where I had the issues. I am 12 weeks past surgery right now and am able to go with one or two shields a day and nothing for bed. Walking is excellent as far as I am concerned, so keep doing that and work the kegels in while you're walking.

 

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Thanks to all who posted in this group. I had prostate removal surgery just over 3 weeks ago and catheter out on Monday. I have no bladder control at all and wearing diapers and pads. Reading these posts made me feel a little better as have been really down about it. Trying to stay positive. Thanks again all.

 

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Good luck, be patient, get physical even though at 3 weeks it's still pretty uncomfortable.

 

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I am 66 and just had my prostate out 9 days ago. Path showed one seminal vesicle involved so Doc says there's a 50/50 chance of radiation therapy in my future if my 6 week PSA is elevated. Meanwhile I'm on my first full day without a catheter and using pull up Depends. Must say I'm shocked at how much I'm leaking but trying to stay positive - reading through this thread has been a big help. Started my Kegels yesterday - sets of 20 4 times a day. Doc really didn't have any suggestions for Kegels so I got that from the internet. any suggestions are greatly appreciated!

 

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My advice, get out and walk, you will be soaked, but over time I believe it helps. I was dry after 12 weeks. Patients is your friend!

 

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I agree with Gkimp, I Once I started walking about 3 miles a day at least 4-5 days a week, I think I got better faster. Try to do some kegels while walking, it can't do anything but help. I'm 14 weeks past surgery and almost there, but it will get aggrevating, so be patient.

 

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So glad I found this forum. I am 49, 11 weeks post robotic prostatectomy and it has been interesting. Things started "normal" after catheter removal at week 1. No issues at night-rock on and was using 4-5 pads per day with regular underwear. Followed Virginia Mason plan for exercise and slowly built walking time from 4-5 15min walks to 4 30 minute walks by week 5. Was at a point there with only using shields when I walked (1 every two walks) until I decided to do some yard work. Moved some paving stones-small under the 20lb advisory but moved them several times in one day. The next day on my first walk soaked through a shield/underwear and shorts. What the heck? Went back to 3-4 pads per day for two weeks-called Doc and he suggested going back to where that was on my original healing- Instantly backed up 5 weeks and just about went crazy. But with my beautiful wife tolerating my occasional rant and often irritability I am back to 2-3 shields per day and walking 2-3x at 30-45 minutes each time. I will say that walking helps mentally and physically and the kegels are a must. I have also returned to doing basic yoga to help with the strength and flexibility as well as the mental aspect. HEading back to school as a teacher in 2 weeks and wondering how my body will react.
Keep the faith and know that it gets better. As one Doctor I was reading mentioned-those people who get out of pads/shields in a matter of 2-3 weeks-acknowledge their luck as they won the lottery of sorts. Focus on your healing and it does improve. Take the tough moments as part of the process and keep moving forward.
As a guy who trains for Long distance triathlon- going 11 weeks without running or riding my bike is exceptionally difficult. But if I can do it-anyone can-trust me.
"There are no difficulties in life-just many leadership and learning opportunities." SED

 

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61 years old. Had prostate removed almost 3 weeks ago and catheter out 5 days ago. Wasn’t prepared for extent of leakage as doctor never mentioned it. Go figure! I’m using depends and after some research starting Kegels. I’m active and ride dirt bikes and street (motorcycles) and golf. Planning on increasing my walking gradually. At 1.5 miles now. Minor leakage at night and while sitting, but constant dribble when up and moving. Realize I need to be patient and let everything heal and expect walking will help the most. Kind of frustrating though how some docs will just send you on your way without preparing you for what’s to come. Just venting! Everybody, hang in there and thanks for the forum, definitely helps.

 

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@Sonorarider welcome to the forum. Cheers Phil

 

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@Sonorarider welcome to the group. I'm now 10 weeks since surgery and I'm finally seeing the slightest of improvement. Still leaking when going from sitting to standing but I can on most occasions make it to the bathroom. Now I'm usually a little wet when I get there but at least now I can make it which 1-2 weeks ago I couldn't. Also I'm only using 1 pad at night and that hasent been that wet in the morning. Like a lot of people in this group told me in the beginning patience patience patience. I never dreamed recovery would be this long but in the long run we are much better off. Hang in there and if you have any questions feel free to ask me. Thanks again Everyone.

 

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By the way my doctor never mentioned a word about leaking or recovery time either. Thank God for this group.

 

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I am 6 weeks post surgery today and 5 weeks post catheter removal. I stay pretty much dry at night and I'n OK sitting but like the guys above when I stand and walk there is leakage though the amount has lessened quite a bit. But I have good days and bad days. I walk about a mile every morning which seems to help. It's depressing at times but then I tell myself it's a long game and then I'm better.

 

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Still leaking uncontrollable minor squirts after 16+ weeks. I don't wear a pad most of the time unless I know I'm doing something that I know could trigger it. The leaks are so minor that even if I do leak in my underwear it's almost nill. But it is annoying still the same and I can't wait for it to quit.

As for my cancer issue, not so good. I had a PSA about 3 months after surgery and it came back 52.46. WTF I said, that can't be right. The doctor's office ordered another one for a week later and it came back over 67. Now I'm concerned. The I had my virtual visit with my surgeon and he thinks the cancer has spread. I was told about 10 days after the surgery that there was still a trace but they can't address it until I heel ( three months ). So the surgeon orders a CT SCan of the prostate area and a total body bone scan. And for good measure another PSA test. I have to drive 200 miles for this testing so I did that on August 24th and as I am leaving the city to go home I get a call from the surgeon's office that my PSA is now 165. And they want me to see an oncologist the next afternoon. So I drove home and all the way back the next day for a 3:00PM appointment with the oncologist.

He told me the cancer has spread to my bones, mainly in my back and ribs. Which was ironic to me because two weeks earlier I had pretty intense pain in both areas. However it's not bone cancer it's still prostate cancer, and the next treatment is going to have to be hormone therapy. Got an injection of Lupron that day along with yet another prescription for pain, and will be going back in about 4 months. The oncologists said this is very treatable and believes he can have my PSA down to around zero by the end of the year. So more waiting to see what happens, but it may be a cronic condition that lasts for months if not years. And I'll have the benefit of going through menopause symptoms because of the hormones. Apparently testosterone feeds the prostate cancer and they have to eliminate the testosterone or at least bring it way down.

So I thought I would put this out there in case someone else might have the same issues. So who knows what the future will bring, but I thought I might be a goner with those high PSA numbers.

 

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Hi @Bgharvey, I'm sorry to read about what you've been going through lately and want you to know we all wish you the very best in this phase of treatment and beyond. It is encouraging to see that your oncologist says this is very treatable and that it's possible to have your PSA down to zero by the end of the year.
We are here on this forum for whenever you need to talk and we will offer you the best that we can. Please take care and let us know how you are doing.

 

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Hi @ShellKnobCat, it's good to hear from you again and to see that you are getting better, bit by bit. The fact your leakage has lessened is a very encouraging sign that you are on your way to recovery! People who know me will say that I am a great believer in walking. I do that every day, come hell or high water! And it's good you're walking a mile each morning. But you know, soon you may be finding yourself walking 1-1/4 miles and then 1.5 miles. You get the picture! Another reason I like walking is you can see so many things, hear so many things that you would otherwise miss if you drove somewhere, or just didn't bother to walk there. Keep up the good work and soon you can just drop in here from time to time to say hello!

 

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@shellKnobcat I walked about 3.5 miles a day until week 8 when I went back to work, then I walked 5-7 miles thru the week. Walking strengthens the pelvic floor, much like Kagles. I was wearing a shield by week 10 and dry at week 12. Walk, walk, walk! I think you are right on track.

 

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Bgharvery,

I was diagnosed with stage 4 prostate cancer in January of this year, three months after my prostate had been removed. It had spread to two lymph nodes and my bladder. Starting in February of 2020, I begun three treatments of chemotherapy which were not effective, and my PSA continued to rise. I had also started on hormone therapy.
Since the chemotherapy was not working, and with little precedent, I was put on immunotherapy (Opdivo), and my PSA went from 21 to 0.11 after one treatment. My treatment and PSA readings are done once every four weeks. After the 0.11 reading, my next three PSA readings were “undetectable”.
So, my oncologist and I are in uncharted waters with this treatment, but it does seem to be working. I will undergo a pelvic scan in October, which will be six months from the time of my first immunotherapy treatment. We are hoping to get more information about what exactly is going on with the cancer. The length of my treatment of immunotherapy and hormone therapy are to be determined. However, my side affects are minimal so continuing treatment for a year or more is not a problem.
My message is to not give up hope! When my chemotherapy was not working, and I had so much blood in my urine, I did not expect to recover. However, there are clinical trials and new treatments which might work for you. Keep trying!

 

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@Holden8285 keep fighting the fight brother!

 

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@Holden8285 That's very encouraging about the immunotherapy especially after the chemo did not have good results. And it's good the side effects are minimal. Just continue to follow the program and work with your oncologist.
And you just keep hanging in there and fighting for you!

 

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@Holden8285 That's helpful information. They also have just put me on Chemo as well, just recently. The drug is called Erleada, 4 - 60mg tablets/day for up to three months. So far no side affects at all other than being tired, but it's been less than a week. They plan on doing another PSA test in a month so we'll see what happens. I'll post an update.