Bladder Urinary Symptoms post Robotic Prostatectomy

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All,

Sorry for the very lengthy post. I looked but can't see a way to link from a post in one thread to a post in another. Otherwise I would have inserted a link vs. quoting. Well actually I can see how to insert a link, it's figuring out the url of the old post that I couldn't figure out! If there's an easy wway, please let me know for future reference!

SNi

 

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Just a quick update for all who have joined in to share and who have been kind enough to offer advice.

I am now 15 weeks out since RP and light years from where I was even 6-8 weeks ago. I was pretty darn miserable after about a month.

I am completely dry at night and have been for about 6 weeks, bladder management is getting better by the day, I am down to 2 light pads a day and one pull up when I am active...hiking 5 miles, walking the golf course to chip and putt.
I can sit and stand and sit back down without having to get to the bathroom. I still have moments when I leak...sneezing, lifting, sudden movements but other day to day movements have become leak free. I am, in my opinion, literally getting better and better everyday and I want to emphasize this to those who are behind me in terms of weeks after surgery and those making progress or struggling to in the aftermath of their surgery. Patience is our key, patience.
I have begun PT for Kegals as I feel that it can't hurt and will report progress associated with that as well.

I will keep posting progress to shed some light for others and am willing to answer any questions should there be any.
It appears, for me at least, that there is a light at the end of the tunnel!

Timmy O

 

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I'm 8 weeks out with little progress, but I'm now doing PT. They are going beyond Kegals with the idea that other muscle groups and nerves support the pelvic floor and bladder. Focus so far has been mid back flexibility and core strength. They will add new exercises on future visits. I've had two sessions to date. I go twice per week for 6 weeks. I'll report on progress. Thanks for the encouragement, Timmy.

 

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Thank you all for sharing. I am 10 weeks out of surgery. Dry at night and usually when sitting (from day one) Been doing PT for a few weeks. Really no progress when standing or walking. I guess I should feel fortunate with my nighttime success. I guess it could be worse, but it is hard to imagine.

 

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Cyclist and mdoshen, you are both at the most challenging point from my perspective, you are to the point where you suspect that you should be making progress but your are disappointed in the lack of significant progress. Please keep positive that you will be turning the corner, as tough as it is a positive attitude is key here. You need to celebrate the little improvements and keep moving, the more the better. Keep the faith as you are progressing slow and steady is our pace.

 

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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

I am in an identical situation as you 6 weeks out today. Can sit and sleep with minimal leakage but as soon as I walk I leak. Doing kegels religiously and still no improvement but I’m not giving up. Returning to work in 2 weeks and a little worried about that. On my feet for 12 hours. Good luck to you.

 

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I had my surgery 9/1/22.Catheter in for two weeks, was glad to get that out. Started kegels before surgery, but had no control for about a week after the catheter came out. Started pt, go twice a week. Seems to be helping a little. They have tried different things last few weeks to stimulate the nerves more. Therapist said don’t look week to week but rather further back for progress. Nighttime isn’t bad , usually have to get up twice a night. My problem is when I stand, I have to try to hold to make it to the bathroom. Some time able to hold, other times no chance. Walking leakage seems to be getting better. Follow up with doctor in December. Hopefully they got it all and it stays away permanently. It is very frustrating but much easier to deal with once you get yourself to believe, all you can do is the best you can do. Work can be challenging at times as well , but gotta keep living. My words of encouragement would be to just relax and stay positive.

 

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I had my surgery 9/1/22.Catheter in for two weeks, was glad to get that out. Started kegels before surgery, but had no control for about a week after the catheter came out. Started pt, go twice a week. Seems to be helping a little. They have tried different things last few weeks to stimulate the nerves more. Therapist said don’t look week to week but rather further back for progress. Nighttime isn’t bad , usually have to get up twice a night. My problem is when I stand, I have to try to hold to make it to the bathroom. Some time able to hold, other times no chance. Walking leakage seems to be getting better. Follow up with doctor in December. Hopefully they got it all and it stays away permanently. It is very frustrating but much easier to deal with once you get yourself to believe, all you can do is the best you can do. Work can be challenging at times as well , but gotta keep living. My words of encouragement would be to just relax and stay positive.

Welcome to the NAFC @Davidsc; we are delighted to have you. You will find some really good people here, and I hope with a successful surgery - you will be able to pass on knowledge to other men who are going through the same symptoms and conditions.

I'm Honeeecombs, nice to meet you.

 

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@Davidsc,

I am two weeks behind you on the timeline, but sounds like our post-op conditions are very similar...
Patience is a virtue (that I DON'T have - but this is teaching it to me!) and time will tell!

I had lab work last Friday and go for first PSA results post-op on this Friday, 11/11 - hope thy got it all, as well, but post-op biopsy confirmed mine did move from prostate to seminal vesicles, so could have gotten into my bloodstream, so a little concerned, but from one PSA test to the next, I suppose!

Good luck to you and all on recoveries!

+God+bless+

 

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Iuwogeo,
Hoping for the best for you. I’m 12weeks out and just started seeing a slight improvement while upright and walking. Actually able to retain some volume in my bladder. Still leaking a fair amount but definitely a little progress. I will be praying for you to get good results. I have my first psa draw today- fingers crossed.

 

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Boomer59, are you able to do Kegels standing up? I am 10 weeks out and unable to do them standing.

 

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Mdoshen
Yes I do them in supine, sitting and standing. The strongest are when I’m seated but can still do them effectively standing. At PT they have me doing them standing with one leg on a step and also with a leg moved sideways away from body. These are much harder. If you haven’t already started I would recommend going to physical therapist who specializes in pelvic floor rehabilitation. I’ve also been doing some routines on you tube

My support team also says just walking in great for rehab. Hard while leaking like crazy but I’ve been doing it. I think just being patient with the time required to heal and get those nerves a chance to recover is a huge part of the process as well.
Good luck!

 

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Thanks Boomer. I have been faithfully doing the Michelle Kerden exercises 3 times a day. And I walk probably 3-5 miles a day. Mainly because can’t do much else and bored. I have a hard time sitting still. Hope everyone’s rehab goes well.

 

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Boomer59, are you able to do Kegels standing up? I am 10 weeks out and unable to do them standing.

Are you unable to do standing due to strength or because of leaking. I leak while doing standing especially later in the day. Laying down usually fixes that for me, but still do standing also.

 

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Unable to do them standing because I feel no strength there, can't get a good squeeze. I started PT a few weeks ago. No real improvement, yet.

Do any of you guys have soreness in crotch area when sitting? I still have a hard time putting socks and shoes on. I have to sit off to one side. Not sure if that is part of healing process.

 

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Mdoshen,
Yes your experience mirrors mine. It seems to take a lot of time for the strength to improve. The only time I would say I can kegal strongly is while seated. Standing is improving slowly. Yes I still have soreness when I sit down but not nearly like a few weeks ago. I’m 12 weeks post surgery and this is the first week I can really say I’m seeing improvement. Really trying to be patient

 

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Thanks for sharing. My surgeon didn't understand how I could be sore down there. He suggested I speak to my primary care physician because it might be related to back issues.

Does anyone still get occasional blood on your pad? It is becoming less frequent, but I do see pink on the pad and a red plume in the toilet when urinating.

 

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Mdoshen
Don’t let the fact that you don’t have a nine inch scar across your abdomen from fooling you into thinking that you didn’t have major surgery. You did! It takes time to heal. Make sure to tell your urologist that you still have a small amount of blood in your urine.

 

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Just found out a little while ago that my lab work came back and my PSA is way less than 1%
...close to 0%!!! So, I passed the first test! Cancer has not come back SO far...

Not sure how many months/years you have to have good results before it's likely not to ever come back...

I officially see the Dr tomorrow, so will ask a bunch of questions then.
This is my first checkup after surgery, so any questions that I need to ask, but don't know I need to ask would be appreciated!!!

Good recovery to all & +God+bless+!!!

 

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That’s awesome. Great news.