I could not agree with you more. Incontinence sucks. I hate it

I really think many urologists are really good at surgery and diagnosis but many are not so good with the side effects and follow through.I have been doing extensive research on incontinence following RARP and have learned that my doctor is not aware of the current research and recommendations. In fact, I have had to disregard a few things he has recommended. ( I checked with other urologists and the research)

The research shows great variance in incontinence following RARP.
Some have no problem, some have life long problems. It seems the big trends are
1. the majority of men have incontinence issues (and ED and a small percentage other things like hernias, UTIs etc)
2. There is no consensus on how many Kegels one should do a day this is cited in the most recent meta-analysis of RARP and incontinence.
3. The research supports pelvic muscle rehab and bladder re-training following RARP and for Kegels. better results when the training starts prior and following surgery, better results with a pt and perhaps feedback.
4. evidence supports that you can definitely overdue kegels So while there is no consensus or even standard recommendation re Kegels (Pelvic muscle training) we need to beware not to do too many it can definitely be counterproductive
5 some medications can help
6 the results are mixed with regards to 'devices' such as pelvic muscle trainers ( Simulators), the emsella chair and other 'short cuts' Some report that these help, some report big problems and set back
7 It seems a majority of men recover between five and ten-12 months. Again better recovery with pelvic floor muscle retraining etc.
8, If after a year 9 for some six months, for some 18 months,t here are options.

Like you, it is both a physical and mental exercise. mentally, when I hear others say 'just live with it' "Get on with your life" I grit my teeth. if only it was that simple.
I think about incontinence almost every waking moment. I do not want to be around strangers and in many instance my family and friends. even alone, I hate it.
I spend most of my mental energy learning everything I can so I do not miss a trick, so I do not waste one day and can sooner or later get back to normal or close to my pre-surgery normal.

some ask would I do the surgery again?

In a heart beat. Incontinence is better than cancer.
Regrets?
I wish more urologists would be upfront about this very difficult price to pay.
I wish more urologists would learn more about incontinence and offer support. I would pay out of pocket if there were an area 'expert on incontinence following RARP>

I really hope the research continues and more is learned about this.
It worries me that so many men out there are being exposed to bad information ( e.g. ' do 100 kegels a day no pain no gain' just live with it' wear a clamp and pretend it is not a problem. How is any of this helpful??