Bladder Urinary Symptoms post Robotic Prostatectomy

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OK, 11 weeks out since surgery. Incontinence issues are lessening as time goes by, I understand that I need to be patient. I do have some questions and could use some experience based feedback.
1) When I am seated, lying down or sedentary and able to collect some urine in my bladder it is much easier to control flow and avoid accidents when I get up and move around. Is this normal as the healing process continues?

2) I also find that when I am active, I typically walk 4 - 5 miles daily all at once, leakage control is basically impossible, I leak non-stop from beginning to end. Again, is this typical during the healing process?

3) I have noticed that consuming certain items now do irritate my bladder slightly and make me want to void, spicy things, some cheeses (especially aged ones and blue cheese, gorgonzola). I have never had these issues before, will these go away after healing is complete?

4) I have avoided alcohol and caffeine religiously as I understand that these in particular can cause issues. I was at a wedding this weekend and had 2 beers, I found that it magnified my incontinence bladder issue significantly. Will this to go away after healing as well? I enjoy coffee and some social drinking and golf and am hoping that I may get back to those.

Thanks in advance..............Tim O

 

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Hi Timmy,

Liquids can worsen IC yes. Many here have expressed there struggle in regards to that including myself. You really have to learn your body and maybe find remidies or drink less of the substances you like to drink but still being able to enjoy them.

Welcome to the NAFC buddy. Pleased to meet you.

Blessings In Christ,
Honeeecombs

 

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Great questions. I am 6 weeks out from the same surgery and have all of the issues you highlighted. I am 63 and very act and finding this incontinence very difficult and depressing. I started with a PT 2 weeks ago, still slow to see real progress. Looking forward to other comments.

 

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Sounds all normal to me.

 

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mdoshen..........at 6 weeks I was not in a good place emotionally so I know exactly where you are. I started seeing improvement with incontinence at about 8 weeks, slow and slight but improvement all the same. Believe it or not, I just got back from a 5 day wedding trip to Florida including flight from CT, I couldn't be my old self at 100% but I did not miss a single event, aside for a round of golf.
Patience is your key and commitment to kegel exercises will pay off. We are all different and therefore we heal differently, trust that you will get better and that you are, in no way, alone in this.
I am in and have been in pull up diapers since cath removal, consumption is way down from the start which is very encouraging, thinking of going to pads in normal underwear shortly, I never thought that I'd get to this point but here I am.
Be patient, get as much exercise as you are comfortable with and celebrate the small milestones that you make in your healing and progress, most importantly stay linked in to this message board to get info, feedback and support from concerned folks who have been there.
You will get better!

 

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Most men here start seeing improvement around months 4 to 6.

Nighttime and seating are the first to improve.

Spicy foods irritate the bladder thus increasing incontinence. As does alcohol and caffeine.

Ask your surgeon about the amount of walking you are doing. If you walk 4 miles in an hour - that is a 15 minute mile and may be too fast and too far for the amount of internal healing needed.

When walking what protection are you using to absorb the leaking? If you are using ONE depend pad, then that is not too much for the amount of exercise.

 

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I’m 7 weeks out and otherwise healthy and active. My situation is identical. I’ve returned to work where I must be on my feet quite often and im totally incontinent. When seated or in bed I collect a significant amount to void but am still soaking pad/diaper while sleeping. I am not a patient person so this has been very challenging. Being at work has helped my mental health (was feeling sorry for myself week 6) but doing PT. Exercises and avoiding the foods and drinks that are irritating to bladder. Really hoping to see real improvement soon.

 

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Had my first meeting with PT today one month out from surgery. I experience leaking 24/7, rarely able to void the normal way. So I start intense kegels now - every hour for the next two weeks, then reassess. PT said that there is a flap that opens and closes in the internal sphincter where the bladder empties. Speculated that damage to the flap might be causing my symptoms or at least contributing. I'm using three pads a day now during the day, 4 pull-ups at night. PT here in Northern Michigan said that patients who have had surgery at Univ. of Michigan, where I went, do well, usually don't need much therapy. Guess I am the exception, though it's still early.

 

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Had my first meeting with PT today one month out from surgery. I experience leaking 24/7, rarely able to void the normal way. So I start intense kegels now - every hour for the next two weeks, then reassess. PT said that there is a flap that opens and closes in the internal sphincter where the bladder empties. Speculated that damage to the flap might be causing my symptoms or at least contributing. I'm using three pads a day now during the day, 4 pull-ups at night. PT here in Northern Michigan said that patients who have had surgery at Univ. of Michigan, where I went, do well, usually don't need much therapy. Guess I am the exception, though it's still early.

 

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I’m a couple of weeks ahead of you and in a similar situation. From what I’ve heard from this forum and the support group I attend we are early in recovery and what we are experiencing is expected. Most people who have experienced this I’m told see improvement about 4 months out. I’m hoping it’s the case. I’m adding walking to the kegals, PT and the rest of my rehab. The guys in my group said it helps. Hoping for your success

 

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@cyclist that sounds like an exhausting night for you changing four pull ups. Have you considered wearing heavier protection?

 

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@cyclist at 4 weeks from surgery what you are describing does not seem that much out of the ordinary. Whatever ordinary is when it comes to recovery after prostatectomy. Give yourself time to heal. I went back to work too early after surgery and had a major accident. Luckily I was wearing black dress pants and it was the end of the day. I got out of my chair and walked to the car and no one was the wiser. Fun times.

 

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Ok, I’m officially 9 weeks out and today I actually saw a little bit of improvement. Typically I’m leaking 24/7 unless seated or in bed ( even then I wake up every 2-4 hours to change diaper/pad) and then when I stand up I gush. Doing sets of kegals 5x a day, weekly pt and walking 1-2 miles per day. So sat and watched tv for about an hour today and when I stood up felt urge to go but kegaled and slowly walked to toilet. Much to my surprise I was able to void almost normally for the first time. I had to tell someone and know that those on this forum would understand. It’s not much but has given me a little bit of hope! I’m going to keep the routine going and my fingers crossed.

 

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@boomer49 - that's great! I know improvement can be in fits and starts for many of us. Sounds like you're doing all the right things to improve.

 

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Very similar to me now a month out. Frustrating if we expect a steady improvement. Feeling the urge and being able to get to the toilet in time is a welcome sign. We need to be patient and try to carry on our normal activities as much as possible. Good luck.

 

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I am only 4 weeks out from surgery - seems MUCH longer!!! LOL!!!

As some have said above, it's the ups and downs, the good days and then not good ones that is frustrating, but I am doing well, based on what everyone on these forums have said. My surgeon did advise me about a month prior to surgery to start Kegels, so I think that has helped me + avoiding things that irritate the bladder (food/drink), which I learned on here...my Dr. said "no restrictions" when I was discharged so I made a LOT of mistakes at first.

@TimmyOlrow0111, you are a few weeks ahead of me, so monitoring your progress!

Good luck to you, celebrate the small wins, be patient, one day at a time, do what you can, but not too much (listen to your body), but also, don't give up the things you love - find a way (more protection, etc...) as that will help with your mental state, giving you things to want to continue recovering for &
things to look forward to!!!

Continued improvement & +God+bless+!!!

 

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Hi – my name is Stone. I had my RP on August 7, 2022 with catheter removal one week later. I’m a 60 year old male in good shape. My Urologist informed me about the potential side effect of incontinence and even encouraged me to begin my Kegel exercises prior to surgery, which I did.

By far, the worst part of my experience was having the catheter in for a week. Though very uncomfortable, at least I didn’t have any swelling or infection at the insertion site. I felt like a new man when that thing was taken out! The pain from my surgery wasn’t too bad and my incisions are already healing. From an incontinence standpoint, days 1 and 2 after catheter removal were the worst for me, that is to say I went through two Depends each day. From then until now, one Depends has been enough to get me through the day. My doctor said no restrictions, so I’ve been drinking coffee, soda and an occasional drink all of which I’ve learned exacerbate the problem. So now I’m making an effort to eliminate these drinks from my diet.

An interesting thing I’m dealing with is the frequent need to urinate. It’s almost as if my bladder is half the size it was. One irritating thing I’m experiencing is a constant small amount of urine in my urethra right at the tip of my penis. If I don’t relieve myself fairly soon after I feel this, it will leak and this can happen several times in a 5-minute timespan. Anybody else experiencing this?

Two months post-op, like with many things I’ve had good and bad days. On my good days I can make it to the evening with only a small amount of leakage. Just when I thought the worst might be over, my bad days bring me back to reality. Through it all, nights are the worst. I’m waking up every 2 – 2.5 hours to urinate and I still have a moderately full Depends in the morning. I'm looking forward to the 4 - 6 month milestone which I'm reading is a good barometer for seeing improvement.

I understand I’ll just have to keep up my faith and be patient until my body rids itself of this condition, which I’m confident it will.

Best of luck to all and God Bless . . .

 

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Your experience is very much like mine. Surgery 9/12, so I'm now about 8 weeks out. Still leaking, still night time leaking. My only real improvement is that I have a full bladder when I wake up in the morning and can void normally. So my bladder can hold the urine, it does get me up in the morning to go. The rest of the time, it's drip, drip, drip. I had PT, two sessions, and the therapist had me doing tons of kegels every day, but not much improvement.(My surgeon's PA said that I might be doing too many kegels) She said that kegels were there only therapy and sent me on my way. I'm going to another PT tomorrow. Should do bio feedback to make sure that I'm doing the kegels correctly, and there are other exercises, I believe. Everything else post surgery has been as good as it can be. Got me first PSA today at <.1, which I expected, but was still a little nervous. On the positive side, the pads during the day allow me to do what I need to do.

 

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@cyclist,

I too was wondering if I was doing the Kegels right (or even if I am spelling it right - !!!) but my Dr. said if you can stop your urine mid-stream, that is a correct Kegel! That is the ONLY way I knew I was doing it right. He had me start pre-RP surgery - once I knew what it felt like, I could do them any time. I can still stop mid-stream now, post-op, when I have a full bladder, so when you do, maybe try that!

Also, I am very nervous (and I guess I will be for the rest of my life) about the PSA checks, as just don't want the cancer to resurface anywhere - my first post-op labs are this Friday, 11/4 and Dr appt for PSA results on 11/11, so we shall see...

Praying for ALL and for me!

+God+bless+

 

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@stonebarington wrote: Hi – my name is Stone. I had my RP on August 7, 2022 with catheter removal one week later. I’m a 60 year old male in good shape. My Urologist informed me about the potential side effect of incontinence and even encouraged me to begin my Kegel exercises prior to surgery, which I did.

Stone, I am on pretty much the same time line as you (my RP was August 9th) and close in age (63) as well. I posted the below 29 days ago (in another thread). Now (end October) I'm better in some respects, the same in others.

THE SAME: I still have to take a trip to the bathroom every time I get up, though I can take up to 4-5 minutes to get around to it without too many issues.
BETTER: Standing, walking, etc. has improved, I am doing more activities without leaks. For example, I have mowed the yard and cleaned up leaves off the driveway 2-3 times - a two to three hour activity... leak free, except one small spurt when I moved a heavy trash can! I drove 15 minutes to a 2-hour board meeting, then drove 15 minutes back home - no leaks. This is welcome!
ALSO SLIGHTLY BETTER: I am now getting up at night "only" 3-4 times (down from the original 14-16, then 6). However, like you the nights are the worst. For me at least, now that I am down to 3-4 times a night it's not too bad considering that before my RA I was getting up at least 5 times a night. I'm lucky in that when I go back to bed I fall asleep almost immediately! I'm wondering how my body will react if/when I stop taking the Ditropan. Due to my T2D & b.p. I'm already on a bunch of meds, so was not thrilled to be taking one more!

Hang in there, it does improve. However, I'm thinking that 'going to the bathroom' is going to be central to my existence for additional months. I look forward eagerly to the day when that will no longer be the case!!

SNi

I had my RP August 9th, 2022 with catheter removal on August 17th. 63 year old, male, in decent shape.

IMMEDIATELY AFTER CATH REMOVAL:

Right from the get go I had no leakage while sitting or lying down; however, as soon as I stood up I had to immediately rush to the bathroom while making a very conscious effort to “hold.” I did get to the bathroom “successfully” approximately 90% of the time. While standing or walking I had continuous leakage.

ONE MONTH LATER (APPROX. MID-END SEPT):

No leakage while sitting or lying down; when I stand up I still need to get to the bathroom. However, now I can take a few minutes (no rush) and don’t have to make an extra effort to “hold.” I have a 99% “success” rate. While standing or walking, I now have only occasional squirts. Recently, I attended the neighborhood block party and was OK for a couple of hours before beginning to lose control while walking home. Most of the time I find one pad a day is quite sufficient.

On the whole I feel quite lucky to be doing as well as I am. However, still can’t wait to improve in a couple of areas. First, I have to make a trip to the bathroom EVERY time I stand up from sitting or lying down – it doesn’t matter if I have been sitting (or lying down) for 5 minutes or for five hours. As a result, my entire life seems to revolve around going to the bathroom, which is a real drag! Second, at night I was waking up and then having to take a trip to the bathroom VERY OFTEN. I started keeping track of the frequency and a week or two ago it was at least 14-16 times every night, which was very disruptive to getting good sleep – I’d get 4-5 hours of sleep and my Zepp showed it was all light sleep, practically no REM or deep sleep. The urologist started me on one 5mg Ditropan tablet every evening, and now I’m down to about 6 times every night. Per my Zepp I’m getting about 7 hours of sleep and a decent amount of it is deep and/or REM, so I’m feeling much better in the a.m.

Prior to surgery the urologist had (somewhat casually) mentioned incontinence as a side effect, but IMO did not sufficiently emphasize or talk about it. Luckily I had googled RP and also started lurking on the forum, so was as “prepared” as one could be. It’s not fun, but overall I feel I have been pretty lucky.

P.S. Yes, have ED too, but I’m not even thinking or worrying about that until the incontinence is history!