Brand new and dealing with post Surgery Incontinence

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HI, I am brand new here, 62 years old and 5 weeks out from Robotic Prostate Removal. 4 weeks since catheter removal and I am completely incontinent and it is hampering my life. I minimize the effects by managing my day, God knows that I don't go far. I am in Depends 24/7 and if I am sitting or lying down I am fine and my bladder will fill, when I rise and clench I am able to make it to the bathroom successfully.
But any length of time on my feet I suffer an never ending "leak". I am in good shape and lead a very active lifestyle and perform Kegel Exercises diligently but am growing concerned in my lack of progress. I have spoken to a handful of guys who have had the same procedure and none suffered leaking to the extent of which I am experiencing.
I understand that everyone heals and recovers differently but my lack of progress is leading me to think the worst.

Any insights or experiences that might be shared would be welcome, thanks in advance.

 

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Without knowing how many pads or pull ups you are going through, I can pretty much guarantee there are others who were like you are. 5 weeks out is not that much time. I was miserable like you are. Keep doing your exercises, and don’t give up. Our “plumbing” was ravaged by surgery, and it will take time to heal, plus we only have 1 Sphincter muscle left to do the job of 3! Don’t be afraid to ask questions of your urologist, and hang in there, it will get better.

 

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4 weeks since catheter removal is a pretty short time on the journey, as many here will tell you. Doing kegels is good, add in walking. And see a physical therapist who specializes in pelvic floor issues asap to make sure you're doing kegels correctly. My pt says she she's improvements for many patients after 2-3 months, then at 6 months.

I leak a lot too after 2.5 months, but only wear Depends at night and when I go out. Home I can live with tight fitting briefs/boxer briefs and changing heavy flow pads 3-4x a day.

Hope that helps!

 

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I don't have your problems (my prostrate is in good shape, thankfully) but for some reason read your post. I've not noticed anyone talking about products- the brand you mentioned are not the most absorbant products available- in fact, they feel wet after an average void- which won't help in building confidence while you are out and about. If you are able to purchase something more absorbant, you'll experience longer periods between needing to change, and, you'll save money as well- changing everytime you have an episode adds up pretty quick. As well, from all I've read here and elsewhere, you are early in your journey, so I wish you great patience, understanding and healing!

 

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For three months I could not pee normally during the day, I assume because it had all leaked and there was insufficient in the bladder for normal urination. The only time my brain signalled it was time to go was during the night. I was also leaked during the night and had to wear a pull up, which I sometimes even changed at about 3.00am. I am now 5 months post op and dry at night and finding mornings up to about 11.00am with only minimal leaking. After that, especially when active in the garden or working outside I too leak. Like you I found it very stressful and thought I would never see any improvement and also like you a friend told me he was pretty well continent by 3 months. At three months I was all set to go for the artificial sphinter but guys on this forum said to be patient. I also found I didn't want to go out socially, attend church or go to an event. Gradually I developed a more positive mindset and I also tried the conveen external catheter system. I went on a weeks holiday and used that system and found great freedom in using it. Today, because I was at home I used pads. I mixed almost two tons of concrete for a shed base, very active and lots of stress incontinence but still at lot less than at the start of my journey. You should consider measuring how much you leak by weighing the pads. That way you can track progress and remember it's not a straight line graph, there will be good days and bad days. I still have down moments but keeping a positive mindset is important. I wish you God's blessing on your recovery. Keep posting as I think it helps to share your journey and the guys on this forum are a great help.

 

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Hang in there! Four weeks since catheter removal seems like a long time.... but it's not. MOST people see a lot of improvement but not this quickly. Everyone is different but my experience was very little change until 4 months, then abrupt improvement--- then at 7-8 months I went to 90% improvement. Your schedule may be different, but you will get better! I may be able to post some other resources a little later. Good luck.

 

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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 physically active and then it was more than a single pad.

At 9 months post-surgery I was able to tolerate one cup of coffee in the morning without issue. I did see that regardless of time of day a beer at lunch or wine with dinner would result in some leakage. Not a major issue but the fact of where I was in recovery.

Now a year and a few months and I am virtually 100% dry. Well okay, maybe there is the occasional stress leakage, but I do notice if I don’t stay physically active the pelvic floor muscles will atrophy and some leakage is more common.

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.

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

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

 

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I’m 10 months out from PR surgery. Took almost 9 months before I saw significant improvement. Some people swear on kegels, others don’t. I did them intermittently. I now go thru 2 pads per day but could almost be at 1, dry at night since month 1. I exercise, take frequent walks. I’m 75. Like said above, everyone is different. Could take several months or up to a year. I don’t think I will ever be totally dry again, but I’m a hell of alot better now than 1 month out.

 

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Everyone’s journey is different. At 4 weeks I was going through 6 to 8 pull ups a day. I am now 11 months out from the surgery. I am 66 and in great physical condition. However, despite daily workouts, lots of kegels, and an active lifestyle I am only dry at night and go though 2 to 3 pull ups or pads during the day, mainly in the afternoon and evening. I see my urologist again in a month and plan to look into the artificial sphincter.

 

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Wow, you guys are great, thanks so much for sharing your experiences as they offer support in many ways.
Honestly, all of your responses are greatly appreciated! Thanks for taking the time.
Cheers!

 

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Just don't get us started on sex after robotic RP... One issue at a time!

 

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I hope your journey is better than mine. After the prostate removal I was on a catheter for a week. I don’t leak in bed but during the day I average 3-4 pads, more if I play golf or work in yard. I went through physical therapy for 6 weeks and I didn’t see any improvement. A year later this September I am still like I was at 3 weeks. In my journey after having a cystoscope the Dr showed that part of the sphincter was not closing which I could see on the screen. After consulting with my Surgeon I decided to get the artificial sphincter. So Monday August 29th I had the surgery. Everything went fine just sore from the incision. It will not be activated for another 4-5 weeks. I just got tired of worrying about leaking every day. I hope you have great results and know there are options out there.

 

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I have posted in several spots on the forums regarding incontinence…my situation hopefully is not your’s…but there is a way to work with ‘total’ incontinence…it will be 6 years in October since my prostatectomy and condition has not gotten better…I’m 78 and can live with this and glad it didn’t happen when I was younger…good luck…Bruce

I am ‘totally’ incontinent 6 years after surgery…just flows continually 24 hours a day…I use the Afex Incontinent System ( https://store.arcusmed.com/Afex-Male-Incontinence-System_c2.htm ) to deal with it…surgeon had trouble reattaching urethra to my bladder…should take 10 minutes but took 1 hour because my pelvic area small and difficult to work the robotic surgery causing damage to the sphincter muscle…

I refuse to have the AUS inserted because of potential complications etc..I’m 78 and retired so ED not of concern and Afex does what’s needed..all though a nuisance to living a freer existence…but better than the alternative…

 

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I'm not sure why - klegels essencially didn't work for me - but really didn't have problems after Prostate surgery. Then had ICU time almost 10 years later, and went medium down to just a little, with none at night, fairly quictkly. but i did go from bad to better, but the next problem as bad as you was after major neurosurgery 4.5 years ago. Did do the Klegels, which don't do much, except I went down to almost lowest pads - which are much more managable. Also, my body pretty much lets me know in time. That took about 6-8 months, with small inclements over a couple of year. Maybe the effort to get to a bathroom is a Klegel - what do I know? Point? Hang in there. It can change, maybe. It is pretty agreed on here to recommend seeing the Urologist.
If you get the "you have OAB" (Over Active Bladder), a fair number if us translate it as "we don't know". Also, pay attention to how well you get along with your Urologist or get treated. Don't hesitate to get second opinion or change Urologist.
Some placces had suppoet groups. This one is the best - and lots of information, even professinanl and adverrinal ones, check out the advertisements.
On here, I seem to see a distrust/bad-side-effects from some of the drugs. Still, there are some answers.
Good luck. See if things change for better, even if it is slow. You are really at the beginning and everyone is different.
God Bless

 

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I'm 18 weeks post RP, 75 years old. I started with 100% incontingency until week 13. I do kegels and have phone contact appointments with a physical therapist, at first biweekly, now monthly.

At first I wore Depend pull-ups during the day, about 8 per day, and Walmart Asuranance/Equate tape-on diapers, 3-4 per night. At week 10-11, I started to 'save' urine for the toilet. At first only in the AM when I was well rested, then gradually during the day. I now believe I save 2o-25% of my urine for the toilet. At least 50% of the time, save urine for my pee time.

At week 17, I am down to 1-2 diapers at night, and 4-6 Depend pull-ups.

I used to wear cloth briefs over the diapers, but now I wear a pull-up over the diaper which holds it in place nicely. The pull-up remains dry and I use it as my first pull-up of the day.

I just went on a 10 day Alaska cruise successfully using a suitcase for 'supplies' and one for clothes. I came home with plenty of supplies to spare. I improved during the cruise and was very comfortable. I'm now planning on doing a much longer cruise, perhaps with a resupply stop for added pull-ups and/or diapers.

While some may be better than you, I bet that most are in your same recovery state at 5 weeks.

Overall, I am managing well, and satisfied that I can reach a goal of near 100% comfort within a year.

PS: If there is any issue I have, it is that my Doctor spoke very little about the length of time for recovery. Heck, I just happy to my good prognosis and be alive.

 

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Very early days for you Timmy. I know what it’s like - you think it’s never going to get better but the stats are for you that it will improve. Could be a month, 6 months or longer but stick in there.

 

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Hi, It has been 5 weeks since my RP. I had the catheter in for a week so its about the same as Timmy. My prostate was extremely large (7 times the size of a normal one-187 grams) The doctor said that I might have a little harder time because of that. Incisions from robot are healed very good. I was cut vertically above my belly button about 4-5 inches and that is the only incision that hurt. I guess that is where they removed it. I can pretty much hold everything at night and pee great first thing in the morning. I do pretty good all day leaking every time I stand, sneeze, cough or laugh. It just seems that the afternoons and evening are the worst. If I can stay put with my legs raised, it seems better but in the evening its worse.

Anyone else that had a really big prostate removed that can share issues? Thanks to everyone who is writing in here, its comforting to know that there is hope.

Also, I was wondering if anyone else has had a problem with penis wanting to retreat in? I am 64 years old and 5'8" 190 lbs. Seems to have shrunk since surgery.

 

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Buzz, I think you're doing well relative to many guys who have had RP. Be encouraged that your incontinence is improving. The pattern you describe is very common, better at night or when lying, better when seated and worse when upright, particularly in the evening.

I was warned during my first meeting with the pelvic floor physiotherapist that penis retraction was a common side effect and affects many men. When the prostate is removed the section of urethra that passed through it is also removed. The remainder is stretched back to reconnect to the bladder. Hence the shortening. At least that's my understanding. I was prescribed 5mg Tadadafil daily and after the healing from the op had taken place used a vacuum pump daily. This is supposed to help with blood flow and help with rehabilitation. There is some research I came across that indicates that the loss of length is recoverable over time with these actions

 

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Thanks for the information!

 

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@Buzz I echo @Hbrownlow comments

I was prescribed 10 mg tadalafil (generic cialis) to help with blood flow. My surgeon recommended the Bathmate Hydro (water in cylinder) Extreme (has a hand pump) penis pump after 8 weeks. Pumping did set back my incontinence. With Bathmate, sign up for the email to receive a code for 30% off - look for now and wait until you get medical clearance - The pump and cushion rings with the discount run $300.

With the prostate is on the inside of the pelvic floor and the penis on the out side of the pelvic floor, surgeons say there is not way for the retraction - the fact is IT HAPPENS. My GP said he had heard that a lot from men who had a prostatectomy.

I am 2 years out and have regained about 0.5 inch of the lost 1.25 inches.