First off, I apologize for the long post, but I figure more info is better.
Age 65, RALP on May 4. Incontinence was pretty severe when catheter was removed on May 14. I started seeing a pelvic floor physical therapist the same week and I also started weighing adult diapers and pads with every change. I also saw an incontinence specialist who agreed that PT was the best thing for me at that point. Incontinence improved quite a bit the first month but then started to level off. It's now 18 weeks after catheter removal and average daily leakage is holding steady at about
.3 ounces (just under 10 ml) -- about
.2 ounces occurs at night while I'm sleeping and the remaining .1 during the day. The chart below shows average daily leakage for each week post catheter removal.
Week#-- Oz --- Ml.
1------- 18.6 -- 551
2------- 14.6 -- 432
3------- 11.4 -- 337
4-------- 6.7 -- 197
5-------- 3.0 -- 89
6-------- 2.2 -- 64
7-------- 1.2 -- 35
8-------- 1.0 -- 29
9-------- 0.9 -- 26
10------- 0.8 -- 22
11------- 0.7 -- 21
12------- 0.6 -- 16
13------- 0.5 -- 14
14------- 0.5 -- 13
15------- 0.3 -- 10
16------- 0.3 -- 9
17------- 0.3 -- 10
18------- 0.3 -- 9
Here's the complication.
At about
week# 12, I started getting uncomfortable knots and cramping in my pelvic floor. It got so bad that it was difficult for me to sit and I felt like I had a golf ball up my rectum. Kegels made it worse. I discussed it with my surgeon during my 3 month post-surgery follow-up (week# 15) and he told me to stop doing Kegels. He said Kegels helped speed up improvement in incontinence but the improvement would have happened anyway -- it just would have taken longer. He also said that, although I was slightly behind the normal improvement curve, the curve itself was normal. It was common to see rapid improvement at first and then slower, more gradual improvement. When I told him I was concerned about
completely stopping Kegels, he said it was okay to do them if I wanted to, but to "take it easy" and stop if they caused problems. So I stopped Kegels for a few days and the knotting/cramping got better.
I figured I should start Kegels again, but gradually. I drink 3 ounces of water first thing every morning and then walk 3.5 miles. There's no leakage during the walk but by the time I get home, I can definitely feel the stress in my pelvic floor. Attempting Kegels within the next hour or so is very uncomfortable so I try later in the day. But it doesn't take many to trigger an uncomfortable tightening in the pelvic floor which I fear is a precursor to knotting and cramping.
I called the incontinence specialist hoping for a quick consultation. I just wanted his opinion on Kegels given the surgeon's feedback, the status of my incontinence, my walking and my tendency to cramp. I ended up talking to his nurse and the nurse told me that the specialist wanted me to have a cystometrogram (CMG-urodynamic testing) before meeting with him. I'd come to the clinic and his staff would perform the CMG and then I'd return a couple days later to meet with the specialist. At no point did I have an opportunity to update the specialist on the status of my incontinence and my actual concerns. He just jumped right into telling the nurse that I should first have the CMG.
So, finally my questions: Is there any value to having a cystometrogram at this point? Would it be better for me to wait another month or two to see if incontinence improves?
PS. My PSA 3 months after surgery is <.1 (undetectable)
Post Edited (LoDesco) : 9/15/2018 10:29:34 AM (GMT-6)