How long were you Incontinent? How did it come back for you?

Good questions, @golive1952. I modified the title of the discussion to reflect your query.

Incontinence is a common side effect for many men in the group. Here are the search results of related discussions that you may also wish to explore:
https://connect.mayoclinic.org/group/prostate-cancer/?search=incontinent&index=discussions

Your description of yourself sounds like you are my twin, except I'm 73. RALRP done 8/18/23. Following in your footsteps. Glad I went this route. Keep in touch. Good luck on your PSA tests.

Thank you Pianoman,

I was 8 days earlier than you on surgery (8/10/23) and 71 now. Fun day getting the catheter out and rid of the ball and chain!

Nights are best for me as I am able to get up (holding it tight) and have a full stream a couple of times a night now. Night-time depends are almost dry in the mornings. Days are okay but afternoon and evening are pretty bad. I think my muscles are tired and have no control at all.

A small tip that has helped me be able to go for longer outings. I went to a concert and was able to last 3 hours using Depends pull-ups and added a thin pad inside in addition - and I took an extra pad and changed in the middle of the concert. Gave me so much confidence because if the pad didn't hold then my depends was a backup. It was easy to run into a bathroom and pull the wet pad off and add a new pad and not have to find a way to change the entire pull-up. I do this now to go to a movie or longer outings. Keep in touch and good luck on the journey.

I had a Prostatectomy in 2006. Then 39 radiation treatments for a recurrence in 2013. Now I’m on my 2 nd recurrence and I still have incontinence issues. I did have a sling procedure in 2010 . It slowed down my incontinence but did not fix it.

@goolive1952 I have used the pad inside the Depends with success also, but there has to be a cautionary note as well. If I ever got into a position where my penis might shift to the right or left, any drippage would miss the pad and end up along the side of the Depends, causing issues. For example, I was hiking and one shoe became untied. I knelt down to retie it, my penis shifted unbeknownst to me, and was blocked from returning to the center by the edges of the inserted pad. Next time I leaked I could feel it along the elastic leg band of the Depends. I guess I just have to readjust more often.

@tomf That's kinda hilarious and can see that happening. I think the better part is you were able to go on a longer hike and can now make necessary adjustments more frequently. It is just great to be able to make longer journeys or outings by adding a new pad every hour or two. Easy Peasy - Thanks for responding.

I had pelvic pain due to pudendal neuralgia prior to my surgery. I had urinary frequency and urge incontinence, this is what got me to the urologist and they found out I had prostate cancer and I had a prostatectomy in September of last year. The first week I was ecstatic, the bad pelvic pain in front went away and with the catheter I was not getting up every hour. After the catheter was removed things went downhill. I ended up with pain in the anal sphincter and can not sit and pain in the external urinary sphincter and penis. The nerve makes muscles hypersensitive and any tightening leads to pain along with any bladder or anal pressure. While I was able to use pull ups including depends prior to surgery I am now using diapers. My penis became smaller after surgery and pulls into the scrotum or becomes blocked by the scrotum and the urine goes off the sides and leaks at the depends leg seam. This also caused friction there and caused rashes when I did my long walks. The diapers I use have leak guards and keeps the urine in the padding to be absorbed. I have had very high pain each time I tried Kegels. I also was taking oxybutin to help stop the urges and increase bladder capacity but I ended up in very high pain due to the bladder pressure which radiated in my pelvic area when it was getting filled more. At this point all I want to do is lower the pain level. I almost want to go back to an internal catheter to allow pressure to be lowered. I have been doing pt and they have given me stretching excercises and they put pressure on certain locations which helps some.

pamperme

I am so sorry to hear your story and hope they find a way to help with the pain soon. I suppose you have seen a different doctor for their ideas or other options. I only know to pray for you and do not know what to say about your journey. I hope so much that it gets better soon.

Gary

The pelvic pain started many years ago. I had a tump (microwave) for an enlarged prostate. This caused me to have retrograde ejaculation. I would get pain after sex in the front pelvic area They thought it was prostasis and gave me heavy antibiotics for months. Then they said I had much debris in the area along with a pea sized blockage which could be felt in the seminal duct and a 2 cm fluid showing up on MRI. I had pain on both sides, worse on the left. They operated on the left side and it seemed better but came back. Due to a car accident I was put on heavy nerve medicine for my shoulder. The pelvic pain would come and go. I started to have urinary and fecal incontinence issues off and on but did not tie to this. The pain got worse and more varied in the pelvic area. When I was told I might have PC I was extremely stressed and the pelvic pain has been chronic. One day my entire pelvic area became inflamed and tingling and I went to the urologist and he told I did not have an infection but this was the nerve. Surgery took out the seminal vessels which I think was causing me the most pain at the time. Now my pain has become worse and is driven by any muscle tension or pressure in the pelvic area. I am trying to manage the pain, not sitting, stretching, relaxation and trying to reduce stress. My prostate PSA has been good through nine months. I do have the hernia at the belly button incision and the incontinence but the pelvic pain is my highest priority. I just wish it would turnoff like it use to buy it has been there now since March of 2022. I was getting less pain but when The pain lessened and I started the Kegels and the pain came back with a vegenance. It is stopping me from doing things I like to even though I am trying hard to not let it
Best wishes to all

I tried the pad in the depends trick, when I pulled out the pad it ripped apart the depends and white sand fell out on the floor. Apparently in the depends there is an absorbent sand that turns to jell when wet. Did you leave the tape on the adhesive on the pad, until you went to the depends. That would solve my problem.