I've been reading you folks for the past month and a half. Some I'd rather have not read...like the guys who walk away from their catheter and experience insignificant pad usage. I know, I know... these guys are the fortunate few. It's been my experience to be riding behind the Bell curve of incontinence recovery. Let me digress...
Diagnosed in late Feb. '07 at age 60. PSA went from 1.3 in March of
'05 to 6.1 in Jan.'07. 6 of 12 biopsies positive at an ave. of 15%. Gleason 3+3=6, positive DRE on one side, neg. bone scan. DaVinci surgery May 8th, '07 at Mayo Clinic (Rochester MN) with Dr. Matthew Gettman (700 + procedures) presiding. Post surgical comments included, "Cancer was contained to the prostate." "The margins were clean." (thus far confirmed by all negative biopsies of those regions) "The urethra/sphincter look good." "We were able to spare both nerve bundles." ("Oh, and by the way, you've got the largest nerve bundles I've ever seen in 700 surgeries."...hum-m-m bragging rights??)
Leakage around the urethra sutures meant an extended (22 days) and intimate experience with my catheter. The catheter leaked like a sieve from day one. I've had to use pads since May 9th. The medical community wasn't proactive with suggestions for a solution to my problem. There were musings about bladder spasms (I felt no physical effects). I wallowed through it, having the catheter removed on May 30th. I was not prepared for what came next. (Astonishingly, the 10 min. post catheter removal exit infomercial with the nurse didn't cover to any significant degree what was about to transpire.)
Total incontinence. Averaged about 11-12 pads/ 24 hrs for at least the first 6 weeks. Had several very embarrassing displays of incontinence when out and about. (It's very difficult at those moments to hang on to the positive feeling of being cancer free.) They depressed me...I cried...but fortunately, not for long. I know that I'm a survivor...(known that since 1982 when I was left to raise my week old daughter and her 22 month old sister). I gushed uncontrollably upon standing from a sitting position. I dribbled constantly when standing. Oh, and then there's that uncomfortable breakdown of the skin from constantly being wet, as well as the itches and rash caused by the plastic edges of the pads.
Some improvement. For the last 2-3 weeks pad usage has dropped to around 8 (definitely behind that recovery curve). I can stay reasonably (unfortunately, not completely) dry at night, voiding 6 to 10 oz. two or three times during sleep. I still have little control when standing after sitting. (That's when I've experienced my most embarrassing moments.) Lately, at times when standing upright in the bathroom and the dribbling begins, I can stop it and make my way to void the rest in the toilet. It's always a small amount, an ounce or so, typical of dribbling when standing. I feel a modicum of control returning, but it's so transitory that I don't feel like I can trust it.
I had a conversation with my doc last week. He was clear that I was not doing as well as he had anticipated in resolving the incontinence issue. He hypothesized that the extended stay of the catheter was still causing residual swelling of the sphincter and surrounding tissue. In my 8th week post catheter removal I'm a little skeptical of that hypothesis. This brings me to my first motivation for posting here rather than just reading. Any thoughts on the validity of his hypothesis?
My second query involves the baby steps of a resumption of a sex life. My wife has and continues to be a saint throughout this whole experience. ( I might add that we are relative newlyweds, as of Oct. '05.) This whole incontinence experience leaves me feeling physically unclean. I don't trust my ability to control the incontinence. My wife has read some posts on threads that suggest starting by touching one another in the shower to take care of any leakage during that time. I've resisted because I think that I will be so focused on the chance of inopportune leakage, that I won't be able to concentrate on the sexual aspect. Can anyone identify with this? Any thoughts, experiences, anecdotes would be appreciated.
Thanks for reading and sharing.
Just one of the guys