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Incontinence and coffee

Prostate Cancer | Last Active: 1 day ago | Replies (28)

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@rlpostrp

I am guessing it is the fact that you consumed "liquid", not necessarily "coffee" as the liquid. I have avoided coffee for the same reasons that I read about it being an irritant. I have always preferred decaf sodas, so caffeine is not an issue there. What I have found is that - for me - it doesn't matter what I drink...it is "liquid volume" entering my system, and my kidneys work to eliminate it, whether it is water, my morning OJ, a Diet Decaf soda in the afternoon or with my dinner, etc, It is all "liquid."
I am 8-weeks post surgery and 6.5 weeks post-catheter removal, and I am going nuts with the incontinence. I thankfully sleep at night without leakage, but I awaken every night between 3:00 - 5:00 a.m. to urinate (the urge awakens me). I can sit "slouched" on my lower back and have no urgency, but the moment that I stand up or get up out of my car, I can't control it..."gravity"...it is all about gravity and a full bladder weighing down on a urethra that is missing two out the three sphincters (removed as part of RP surgery with all of us whether you knew that or not...I did not know before surgery). With getting out of my car, I just stand there, let it flow, and get back in the car, pull the wet pad out of my diaper, and put in a fresh dry one so I can walk into the store or restaurant I am going to. I carry a pad in my pocket as well for any additional leakage. That usually happens right away in the clean fresh pad, just by "walking" the 100-300 feet from where I parked into the store/mall. I often leak enough that I just head straight for the bathroom to change the pad. My doctor, and literally "all" literature says that 66% of men regain their continence control between 2-3 months post-catheter removal. I am worried about that, because I really have not noted any improvement these first 6.5 weeks post-catheter removal. I do NOT want to be in the remaining 34% of men that take 6 months to a year to regain continence...and some men never regain their continence.
I am newly divorced after 32 years and I want to re-enter the dating scene as soon as possible, but not when I am wearing a diaper and pad...that is not exactly something I want to lay on a new lady in my life. On that note, I have read that several times per week, we all should try to get and maintain an erection for as long as we can hold it to help maintain/improve neural and vascular function down there. I note that with incontinence, I ejaculate URINE at orgasm. That will not fly with any new lady partner that I hope to meet. Ejaculating urine is yet another thing that my physician never said will/could happen, and I only found it in the literature "after" I experienced it.
This is one "f'd up" mess of a situation. Had I known all of the post-op consequences that were NOT clearly communicated verbally or in writing by my physician, I might not have had the surgery. I was/am a Gleason 3+4=7 with only 10% being "4" cells (12 biopsy cores: 3 normal, 3 at "6", and 6 at the 3+4). But the post-surgical pathology report showed "surgical margins", cribriform glands, EPE, and left seminal vesicle invasion with no tumor or many cells. That all makes me a p3Tb. My dad lived to 99 years 10 months old WITH prostate cancer (no surgery). My grandfather lived to 96 with prostate cancer (no surgery), and my uncle lived to 86 with prostate cancer (no surgery). All died of "other causes" even though they had prostate cancer for 20 "+" years. My dad did become incontinent his last five years or so, but at 95 years old, you don't have to worry about how it will affect your sex life. So in retrospect, I wonder if I would have been better off NOT having the surgery and suffering all of these post-surgical effects. "Too late now."

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Replies to "I am guessing it is the fact that you consumed "liquid", not necessarily "coffee" as the..."

You are 8 weeks post RP Your doctor said most men regain continence between two and three months I was also told that most men turn a corner around two months. The 'trick' here is 'most' technically most can mean more than half but this falls short of what most means if we consider a larger majority

please check out https://pmc.ncbi.nlm.nih.gov/articles/PMC1800860/ Table One: Continence Recovery Over Time.

I really understand about 'going nuts' I am probably 18-19 weeks post-RARP (I had a catheter for two weeks) so maybe 16 weeks post catheter removal> I am getting better but have a long ways to go. I hate incontinence.. but at least I can see some progress and hope that by September October I will be in much better shape. I think I was like you about five to ten weeks out. I did not want to go out in public, I hated having little control and having to contingency plan all the time. I know lots of guys do better and I am super happy for them. I also recall quite a few more or less asserting just go on and live your life. One guy was playing golf, another refereeing some sport, some going to work a week after the surgery. Great. TO me, it is not that easy to go about life as normal. However, having real facts, good research, some great support on this list and being able to see some noticeable progress has helped

I wish more urologists would check out good research and tell patients it is wonderful if you get better results but most (this time meaning a big majority 80-90%) -not all- men recover closer to one year
the research indicates both (a) that most ( more than half, this time closer to 60%) ) gain continence around 18 weeks however (b) it takes between 30 and 40 weeks for ~90% of men to achieve continence. this is an important difference.

I would rather be told the worse possible side effects realistically and then be pleasantly surprised

Have you been working with a pt trained and experienced with men post -prostatectomy?
Research supports Kegels ( done correctly) research supports better results with support from a pt and possibly biofeedback if you can find it.
If you like I am happy to share more with you including the regimens I do every day.