Yes, I have found that taking a break and coming back, particularly after moving around can give quite a boost in volume the second and subsequent times. the folding thing makes sense and would account for everything. I think I have read of similar issues among the folks here with folding of the neo.
That is a good idea about cathing prior to resolve the issue, particularly if you are having a retention issue now.
I wond if going more frequently will allow the neo to shrink down a bit or is it once its stretched - that's it.
He said something about a fold-over or something like that being a possible issue since my capacity has increased quite a bit. Suggested going, waiting an hour and going again after some moving around.
I'm starting to think maybe I've just not been diligent enough. I forget to go and then when I do I get impatient. I probably have been draining 3/4ths of it and then going about my business, which then gets full again and I start noticing the fullness feeling or kidney feelings and then go again.
He checked the urethra multiple times very slowly and then he had the camera right near the urethral sphincter and asked me to open it and close it. Didn't know I could do that on command like that but it looked just fine. Opened nicely and closed tightly. He also checked out the ureters (unrelated and they looked good).
Since my original diagnosis was CIS non-invasive, I had an office cysto every three months so I was getting used to them. Not liking them, mind you, but getting used to them. Always asked for the lydocaine gel and at least 10 minutes after the gel to give it a chance to work before beginning. My local uro and my cancer center uro never had a problem with that. They are certainly much easier when your sleeping.
The cath thing was certainly way less trouble than I thought it would be. Kind of like the monster under the bed just being a dust bunny.
Once you turn the light on (try it) the scaryness goes away.
I was thinking it that it would probably be a good thing to do prior to sex. If residual urine could be a problem, maybe getting rid of it all would be a good thing. That way there isn't the concern about that.