Incontinence

[Archives1]

It’s been getting on towards four months since I had my prostate removed and my urinary incontinence does not seem to be getting better. I Practice Keagle exercises but not too often so maybe that is the reason. I get through 3 to 4 adult diapers for a day and I don’t know whether that it’s normal or excessive. This is my first post and I look forward to hearing from others on the forum.

 

[Archives1]

Greetings Midren!

It's 2:21am here on the East Coast; but I'm up because my new kitten is keeping me awake and the heat is killing me. It's good to hear from you. I am sorry you are experiencing the unfortunate effects of what comes with the removal of the male prostate.

However you are here on this earth; and what we are seeing in the medical climate right now is an increase in cancer related to the prostate which can be fatal if left untreated. I wish there was more awareness in that regard.

But you are not alone on here. On here you will find many a great people men, like yourself who experience what your going through. I cannot relate in regards to that; but I can relate to the feelings and emotions of what extreme urgency and in some cases daytime lack of control feels like.

I suffer from diagnosed OAB Syndrome with symptoms of Urge Incontinence and Nocturnal Enuresis. I'm 29 years old. Bladder issues do not discriminate.

Anyway, wish you all the best. Take care.

Blessings In Christ,
Honeeecombs

 

[Archives1]

Hello Midren,
This is my first post as well and I hope it gives you some hope. I was a healthy and fit 61 year old when I had a radical prostatectomy Dec 2021. I was shattered when I was told in September of the same year that I had cancer and a PSA of 33, after consulting Dr Google I thought I was a good as dead especially when my Gleason score was 9. Anyway my two month review with my consultant my PSA was 0.01. We were all surprised and delighted, the consultant couldn't believe it. I told him that's why I paid good money you.

My incontinence was bad 3, 4 sometimes 5 pads a day and it was getting to me. I had a couple of accidents when out as I didn't know I was leaking badly until I felt my trousers wet. I stopped going out and was becoming a hermit. The physio would increase my exercises then the next time decrease them, then increase them again. I stopped going to him. I continued to do kegal exercises especially standing. I was walking on the flat then started walking up and down steep hills for an hour, minimum 30 mins.i also started doing planks, squats and lifting light weights again. I noticed I would have a couple of good days then a week or two that were bad. I started meditation to take my mind off my bladder problems and the urge I would feel before leakage and to lessen the stress and frustration. Last month May I saw a massive improvement. I'm on one pad a day now and most times very little leakage. I don't know if the exercising helped or things inside are starting to settle and are starting to do what they're supposed to? I think it just takes time for the body to recover I've read sometimes a year or longer, everyone is different. Stay away from foods and drinks that irritate the bladder. Being Scottish I like a whisky, I found out it was a big mistake having one or two. I couldn't control my bladder. There are some good videos on YouTube that might help. I do hope things settle for you.

 

[Archives1]

Hi Midren,
Welcome to the forum. I'm about 9 weeks post-op RRP. 63 yo and my cancer was caught fairly early although it was a pretty aggressive form, necessitating the RP. I'm gaining control back albeit very slowly. I am doing the Kegels and have started a few other pelvic floor exercises that I found in internet searches. Most of my leakage occurs with exertion. I ordinarily go through 2 heavy pads daily when I'm working around the house. I don't have issues at night or when sitting watching TV or surfing the internet. I really wasn't prepared for the issues I'm having. My surgeon had told me there was a very small possibility of incontinence but I think their definition is based on total loss of control or sensation. When the catheter was pulled they told me it would take a little while to get full control back. I thought they were talking about hours or a few days but apparently they were referring to weeks or months. What I've learned from this site and others like it is that it is a very long recovery with most people gaining most of their function back in 12 to 18 months post-op. There are other procedures available if function doesn't return but those only seem to help a fraction of those who undergo it. Do the Kegels and try to keep a positive attitude. Most people do get most of their function back. Thanks for posting.

 

[Archives1]

I am a 69 and have an active life style. I picked the wrong parents and inherited a propensity for prostate cancer. All the males on my father’s side developed prostate cancer. Due to my age, life style and family history I opted for RP when diagnoses in Oct 2020.

I had my radical prostatectomy on March 8, 2021. I’ll share my experience as it is similar to others. Even then bear in mind that all of us are recovering at our own rate.

I leaked like a sieve for the first month using 5 or more pads a day. I did my Kegel exercises daily and I attended my sessions with my pelvic floor physical therapist at least twice a week.

I found that I couldn’t measure progress in days but could look back on the past week and see where things were slowly improving.

The first sign of recovery was not during the day but finding less and less leakage while lying prone in bed at night. It seemed that the bladder needed to be retrained on when to send the “urge” message to get up and use the toilet. The minute I stood up the drain opened up and leakage proceeded. The good news was things were improving at least at night.

Then slowly I started to see the bladder starting to come back on-line and start retaining some urine. At this point in the recovery any sneeze, cough or even trying to pass some gas resulted in a leak.

For me significant leakage started to abate three months after surgery. I kept up with the Kegel exercises but cut back on the visits to the physical therapist. Bladder control continued to improve, and I was down to 2 or 3 pads a day.

By month 4 I was down to a single pad unless I was really physically active and then it was more than a single pad.

This is my recovery, and your recovery will be different, but the general sequence of recovery is the same.

At 9 months post-surgery I toleratde one cup of coffee in the morning without issue. I do see that regardless of time of day a beer at lunch or wine with dinner will result in some leakage. Not a major issue but the fact of where I am in recovery.

While Kegel exercises are good don’t limit yourself to just isometric exercises. Start walking, if you are able, and increase distance and speed over time. Wear protection and get back to your normal lifestyle as quickly as you feel you are able

Don’t get discouraged, you are amongst friends here.

 

[Archives1]

@Midren I have incontinence due to functional neuro issues an can easily get through three-four nappies in a day and one overnight if I'm having a particularly bad day.

In terms of kegels, I must be three-four months on from doing them and am noticing some improvements. I was struggling to remember to do them and was wondering if I was doing them right but watched a video which was a great help and my regime has been to do some after every change. Having got into that routine I'm a lot better.

Here's the video which helped me in terms of technique: clickable text.

It's taken a fair amount of time to notice some improvement and it does depend on things like if it's a hot day (if it's hot and I'm drinking a lot then I have next to no control) and what toilet access is like, however on a normal day with decent toilet access I'm noticing I have fewer accidents.

It seems kegels can take a fair amount to have a significant effect so it's not a quick fix.

 

[Archives1]

What you're experiencing does not seem unusual to me at all. I'm 70 y.o. and about 5 months post-RRP (robotic-assisted radical prostatectomy. I have a great pelvic floor PT and am very active throughout the day. I have little control during the day and go through many pads a day (about 10). Pretty good control at night. My improvement has been really slow despite the fact that I'm in good shape, at a normal weight, and stay very active. My dr said if I was a couch potato, I'd use less pads, but then I probably wouldn't recover as well in the long-run, so I'm determined to keep pressing forward and get to full continence. Hang in there - it is a long process for many of us.

 

[Archives1]

Hello Midren. I too had a robotic radical prostatectomy and although the surgeon had talked about the fact that I would experience incontinence I didn't expect to battle the level of leakage that I did after having the catheter removed. For the first few weeks to a month just standing up from a seated position resulted in 100-200 ml of urine just pouring out of me. It was so severe that I sat with a medical bucket by my side to catch the drainage whilst heading for the bathroom. I saw a physical therapist who specialized in the field of incontinence and she went into great detail to show me all of the muscle groups that I would need to strengthen to help retention and which ones I needed to relax so that I didn't unintentionally push urine out. The knowledge that she armed me with, whilst getting me to familiarize the feelings that I would have by doing each exercise correctly slowly but surely started to pay dividends. I am now 5 months on and like a lot of people have very minor accidents when coughing,sneezing or some exertion but I am playing sports again (golf and pickleball) and at age 66 am intending to start playing soccer again in the fall. I really feel that if I hadn't been lucky enough to find the right therapist I might not have had the ability to return my life to some normalcy. Believe me, two months in, I didn't feel that I would ever be able to function in public but my therapist pulled me through and I make sure that I do my exercises regularly. I appreciate that we are all different and get different results but keep working at it. I wish you and all RP brethren the best of luck!!

 

[Archives1]

I'm 73 and now 18 months post surgery. I leaked heavy the first 6 months. I have not used a pad for the past 4 or 5 months, will have a small leak with a cough if I don't get a keagle in first.
Just a point of interest: I own 3 model A Ford's that need to be double cluthed to shift. I think driving these A's work like a keigle! Go get a Model A hobby

 

[Archives1]

Hello everyone,
I had my catheter removed on the 4th of this month after the removal of my Prostrate. The catheter was in place for 2 weeks.
Currently, I'm feeling very down with the leakage and the inability to control it. I have been doing my Kegel exercises, with little to no noticeable improvement
Some days I don't feel like getting out of bed, as leakage while in bed is minimal.
I have to admit that I am very depressed and wish that I never underwent surgery. I feel that my quality of life is extremely poor and not worth living. I also feel embarrassed to go out and make excuses not to see people.
I am 70 yo and have always been healthy, fit and very independent and sexually active. Even prior to being diagnosed with a high PSA level, I was feeling well and extremely heathy.
I also fear that if or when the leakage issue improves and I will then have to struggle with erectile dysfunction, when in he past this was never a issue.
Sorry for the my ramblings, but your input would appreciate, as I do need help.

 

[Archives1]

Hello,
I hope you didn’t have the surgery just because your PSA level was high. Incontinence for me was very bad for 3 months then started getting better. At 9 months I’m 98% dry but still wear a light pad daily. ED was never an issue for me either, but this changed the game. Not sure if that will ever be fully functional again, but if so I’m thinking a year or more. Doc could only spare the nerves on one side but thinks I’ll be fine over time. At 55 I had to get the cancer out, and did. It’s normal to leak like a fire hydrant for a few months, but it usually gets much better. Good luck.

 

[Archives1]

Hello,

I'm 7 months post RP nerve sparing surgery (Cancer). Dealing with incontinence has been pretty darn hard. I've gone from being very hopeful to quite depress in a matter of hours. My doctor told me to do 150 Kegels a day, 5 sets / 30 reps at 30 - 60 second intervals. I've been pretty good about doing them and I believe that it's made all the difference. I only wear a light pad when going out or doing any kind of physical activity otherwise I don't wear any. As for ED, that too has been an issue. Before RP, my wife and I enjoyed a good sex life. No issues. I'm currently taking half a blue pill twice a week but I'm hopeful that in the future I won't need too. I was told that the nerves are often damaged during the surgery and it heals as fast as hair grows. Can take as long as a 1 year or more to fully heal.

Stay hopeful and strong,

 

[Archives1]

Hello,

I'm 7 months post RP nerve sparing surgery (Cancer). Dealing with incontinence has been pretty darn hard. I've gone from being very hopeful to quite depress in a matter of hours. My doctor told me to do 150 Kegels a day, 5 sets / 30 reps at 30 - 60 second intervals. I've been pretty good about doing them and I believe that it's made all the difference. I only wear a light pad when going out or doing any kind of physical activity otherwise I don't wear any. As for ED, that too has been an issue. Before RP, my wife and I enjoyed a good sex life. No issues. I'm currently taking half a blue pill twice a week but I'm hopeful that in the future I won't need too. I was told that the nerves are often damaged during the surgery and it heals as fast as hair grows. Can take as long as a 1 year or more to fully heal.

Stay hopeful and strong,

Welcome to the NAFC Nanoron. It's good to see a new member ^_^.

Please know that you are not alone. I don't suffer from prostate issues or can relate on that regard; but I suffer from extreme spasms and OAB/urgency continence issues.

Your feelings are valid as I can relate to the changing mood and feeling "less than" others for something you cannot control. Its a day by day process - some days are good, others not so much. You will find alot of good people on here that will help you on your journey. Of course, I'm here as well.

Blessings In Christ,
Honeeecombs