@fritzo

“Question: How long before your bladder capacity goes back up? How long before you feel like you can hold it again?”

Early days, I was like that - seemed like I had to pee every 15 minutes. Care team told me simply to do a few quick kegels, which sends a message to the bladder saying, “Hold on, I’m not ready yet,” and to wait 10 minutes if possible…then 15 minutes…then 20 over time, in order to allow the bladder to learn what full means. Right after surgery, your bladder acts like a pass-through, I think, and whatever comes in wants to immediately come out, and it has to be retrained.

I think you’re well ahead of where I was at that point, because it took me a solid two months before I could make it to the bathroom. Before that, I was releasing all my fluids in my briefs.

“Question: How do you manage the sudden need to go while you are out and about?”

The same as any leaking - if I need to go and there’s no bathroom available, then I’ll have to go in my briefs…that’s what they’re there for, after all. Then it’s a quick stop at the first available bathroom for a change of bottoms and on my way.

Real-world example: I had to drive about 75 minutes up to the cancer center for my pathology results and initial ED clinic visit. There’s one rest stop on the way, a couple of exits with some fast food places, and a few long stretches with nothing.

I stopped at the rest area, which is about 15 minutes from my house…then I stopped again about 20 minutes past that for another change. The rest of the time, where there was nowhere to stop, once the bladder pain started, my only recourse was to lift myself up in the seat a bit, to get the downward pressure off my bladder, and then my bladder emptied and the pain passed…for another 15-20 minutes, so I had to do that a couple of times.

“Definitely have a similar feeling of blue balls (but obviously, not caused by the old reasons). For people that have had this, how long before that goes away?”

Probably a couple of months…sort of a tightness combined with soreness and mild irritation, especially when bending over. Honestly, four months later, it still creeps up every so often, for a day or two. I assume it’s just part of the healing process.

“Do other people have that feeling that when you have that strong urge to urinate, that you feel irritation the entire length of your urethra?”

Yes, definitely, but I’ve had that as long as I can remember, whenever I would delay emptying. By the time I’d get around to going, I could feel the discomfort right down to the tip of my penis, almost like the fluid was right there in the tip, screaming to get out, but my little opening was valiantly holding it back until I could make time to go.