Managing post surgery expectations

[Shopnot]

I had a radical prostatectomy and lymph node dissection on 9/12 and my catheter removed on 9/22. (Surgery was successful and I received the best pathology report possible.) As I am now at the very early stages of getting urinary control back, I'm struggling to understand what might be "normal" or "expected" vs causing concern. I've noticed at night that I'm waking up 5/6x with urges and I'm successfully able to empty my bladder. Very happy with the early ability for control. However, during the day I rarely feel urges and end up urinating whenever. Is it typical to not feel the urge or have the sensation of urinating? Again, I know I am VERY early on in my recovery process but at 55 years old this has been a punch in the gut and I just want to make sure I'm doing everything I can to recover properly (which includes noticing anything that may be atypical).

[Tall_Allen]

You should begin penile rehab now for ED and size loss. Kegels, of course, for incontinence.

[allie2020]

You are very early in the recovery process, not even quite two weeks since your surgery. Delighted to hear your pathology was excellent. You want to be sure you are doing your kegels properly and very regularly a few times every day. If you stop your flow while urinating, those are the muscles you want to be exercising with kegels. I used Sildenafil (generic Viagra) every day starting shortly after my RP and started with the vacuum erection device after five weeks. Remember, no lifting anything over ten pounds, no exercise other than walking and no sex for six weeks from the date of your surgery. Personally, I leaked like Niagara Falls immediately after catheter was removed and I had virtually no control. Then, it was a process, sometimes two steps up, one step back. By about the 6 week mark I was 90% continent and fully continent at the 8-9 week mark. All the best to you.

[Shopnot in reply to allie2020]

Thank you for your reply and sharing your experience. I know I am very early on in my recovery and still analyzing things too much. I had presumed I would be able to feel the urge to urinate, but just not the ability to control it. I've been through multiple significant surgeries that improved my quality of life and this is the first one (that in the short term) has reduced my quality of life. But I know it will get better!

[WhatHump in reply to allie2020]

That was my trajectory also. I often thought that they should teach you how to do Keagle‘s before the surgery and possibly even strengthen those muscles before the surgery. Perhaps there is a reason that is counterproductive. My own experience out 2 1/half years is that a couple extended contractions of about 30 seconds is sufficient to keep these muscles thick, which appears to be how they help you control leakage. Again, anecdotal. But it really works for me. It’s like the difference between weight lifting light weights with many reps versus heavy weights and low reps. The latter thickens your muscles, which I believe is the goal here. A good physical therapist should be able to help you isolate the two muscles you want to focus on. They are forward of your anal sphincter, which you do not want to work on.

The second issue you will deal with is that the remaining urinary sphincter is a voluntary muscle. Thus, as you encounter new situations that your brain has not learned from yet, you may experience a little leakage. Overtime, your brain learns from these episodes, and corrects, because the brain does not like the body being wet.

Hope that helps.

[Lost_Sheep in reply to WhatHump]

They do recommend starting urinary sphincter training (Kegels and related exercises) before surgery nowadays. At least my surgeon's office has a handout recommending it. As far as the Veteran's Administration is concerned, it was a non-issue until I specifically requested authorization for a consult.

My surgeon's office is out in the civilian world. My urologist is attached to the local military hospital. Care is courtesy of the VA, as my prostate cancer is service-connected. Authorization for care in the local community is because the military hospital was not equipped to deal with my particular set of circumstances. (Cancer and prior surgery).

It seems everyone's particular medical milieu is different. That's why it helps to be proactive and informed...thanks to venues like this and local support groups.

[WhatHump in reply to Lost_Sheep]

My local (supposedly premier) suburban Chicago hospital was a hot mess. (This was during and after peak covid craziness). Surgical staff seemed thrilled to have someone willing to show up. Most support staff (PTs, sectys, etc) refused to come in. My PT was an elderly woman brought in from retirement, so she was nice but worthless. I got my own PT via a referral from a friend who is a PT. (Walgreens also kept running out of ED drugs like the intra-urethral suppository, and ultimately couldn't get them at all. And I got the Rx for this from my PCP, not the Urology unit at the hospital.) The hospital PT still seems dysfunctional. I sense the head guy and the head surgeon clashed and the PT guy left. I still can't make an appt there for PT to get Trimix. Will try CO soon.

Good luck.