Still Leaking after Robotic Surgery: Thoughts on water intake

Your situation is very common, as others have mentioned—and that’s been my experience as well. I had prostate surgery last September and am still dealing with incontinence.

I’m currently working with a new physical therapist who performed a biofeedback evaluation to ensure I’m contracting the correct muscles. She is now helping me integrate Kegel exercises—not just in isolation (like lying down, which I was mostly doing before with my first physical therapist), but into everyday activities such as walking, climbing stairs, and getting up from a chair.

I plan to continue this approach for at least the next 10 weeks and am hopeful that things will improve. For now, I’m not considering surgical options like an AUS; I’d like to fully exhaust physical therapy and give my body up to 12 months post-surgery to recover.

@soli
Agreed, I don’t want any more surgeries either. It is just frustrating. The life has changed so drastically and quickly. I took the surgery option because I was told that with the radiation therapy I would deal with leaking for long time.
Any way, we got to move on with the existing conditions.
Thanks for your reply.

@fritzo
I almost finished reading the book “Life after prostate cancer”.
Overall it is a good book to learn and understand how it works but it is meant for people who will have surgery in 4-6 weeks. It is like pre- Op preparation. I wish I would have read it prior to my surgery.
I agree to certain degree that you want to drink a lot of water but not sure if I would drink water during the night. One day I tried and my night was ruined. I woke up 5-6 times to go to bathroom.
She does have a good point that you don’t want the bladder to shrink otherwise your frequency to go to bathroom will be very high.
One has to balance based on your body and condition.

@eshan Yeah, that's a good description of that book; pre-op guide for various treatment options. I'm not saying the book swayed me to surgery, I was already thinking in those terms. When my Decipher score showed up at .61 and the radiation oncologist said he recommended six months of hormone therapy, I was like, surgery here I come. Did not want to start with hormone therapy unless I need it later.

Yeah, water drinking...going have to balance what my body says for sure.

I'm now four weeks from surgery. ...

@fritzo
Hi, this is my sixth week after the surgery. My leaking is very bad when I stand up or when I am walking. More the water I drink the leaking gets worse. Ms. Vanita insists that one should drink more water which I did for few days and I leaked a lot. I changed six pads in 24 hours period. The worst part was I used to get up during the night every two hours for peeing.
How is your leaking? How many pads are you using?
Is it getting better? Mine is almost same after six weeks.
Just getting frustrated. I am afraid to go to public events.
Take care and hope you get better.
Thanks

@eshan Hi eshan...so sorry you're going through this super challenging time.
I have one month until surgery....so I've been trying to prep and wrap my mind around everything that is to come. (had some unpleasant experiences during biopsy/Petscan process, so I'm changing my approach).

This won't help, but I'm super fortunate that I currently don't have to get up a night to go right now before surgery, but that's all gonna change post surgery.

I know nothing...but some rlpostrp has some great advice about reaching out for therapy post surgery. I'm going to copy and paste ripostrp's post here....which looks like amazing advice:

rlpostrp | @rlpostrp | 5 hours ago
Three things:
1) Have your urologist write an order for Pelvic Floor Physical Therapy (PFPT). It is very common for postpartum women who need to regain their control after giving birth. Post-prostatectomy men need it too. You'll need up to 8 sessions, and your insurance company will likely only approve two at first, but your therapist will write a justification for six more that should be approved. There are so many exercises and even breathing techniques beyond Kegel exercises... I was amazed. And they all helped. I am now ~98% continent.
2) Part of PFPT is behavior modification. You are taught to drink 8 ounces "max" at any given time. As soon as you go to the bathroom to urinate, you immediately drink 8 ounces more of water right after, if you want...but it is suggested to keep you hydrated and flowing, but also to get you used to drinking just 8 ounces.
3) You will be told NOT to drink acidic beverages (OJ, etc.), and no sodas, and no caffeine, all of which are bladder irritants which will make your still-covering bladder pass quickly. That will be for a long while (2-3 months until your bladder calms down and heals). No pun intended, but your post-surgical bladder is "pissed off." It has been assaulted during the surgery and it no longer has the prostate sitting under it to help support it...it wants to leak anything and everything. To that end, your PFPT therapist will have you keep 24-hour daily logs of when you pee'd, when you drank, what you drank, and how much you drank, as well as how many diapers/briefs you used in a day. You'll be surprised at how much that log tells you, especially when you told yourself that the one cup of caffeinated coffee, and the 12 oz. afternoon soda, and the glass of wine or beer with dinner that made you pee more, and sooner than you thought. The log tells you the truth, and that you can't stray from the plan to drink only 8 ounces of water at a time for those 2-3 months. Your PFPT will tell you it is OK to cheat a little, but not much.
Good luck to you.

I'm sorry to hear that you're having leakage. Typically the leakage improves over time and with pelvic floor physical therapy. Check out my recent post regarding treatments for long-term leakage:

- Urinary Leakage After Prostate Surgery: Treatment Options and When to Consider an Artificial Urinary https://connect.mayoclinic.org/blog/mens-health-1/newsfeed-post/urinary-leakage-after-prostate-surgery-treatment-options-and-when-to-consider-an-artificial-urinary/

@drsevannhelo
I have not started pelvic floor physical therapy yet. I couldn’t get appointments until May 20.
I am keeping my fingers crossed.
I will check out the options.

It takes time to build up the strength of your Kegel muscles. Can't stress enough to learn how to do them correctly and then do them numerous times a day. If needed, see a PT that does a lot of work in this area. We have a group of PT's near me that are also very close to a retirement community that advertise work in this area. You don't necessarily need a PT to learn how to do Kegels. Some great resources on the web. Our female fitness director at the Y taught me how to do them. She plopped down on the floor in the weight lifting area and demonstrated 3 exercises on the spot lol. We have a good relationship and felt comfortable asking her knowing she worked with women in this area.

@eshan the simplest exercise is to simply stop your urine stream intermittently while urinating.
Try to hold your urine as long as you can so your bladder will be somewhat fuller and then perform the above.
If you are simply leaking uncontrollably, try sitting on the toilet and do the exercise as you leak.
Every time you pinch off the stream is like doing the perfect Kegel.
Phil