Questions for men who have recovered their sexual function after RP.

[RJ_in_Pa]

Thanks guys. Great advice. You guys are truly my light of hope in these seemingly dark times.

[Flounder]

Thankfully I completely dodged the incontinence bullet. It was one of my biggest worries and I told my urologist so. He recommended an aggressive kegel exercise routine before the surgery. He explained the physiology of the two sphincters that control the male urinary stream. The internal sphincter is removed with the prostrate. Only the external sphincter (part of the pelvic floor muscles) remains after a prostatectomy. He said in his experience, men who start building up their pelvic floor muscles before surgery have greater success re-gaining control after surgery. In the weeks leading up to my surgery, I did a minimum of 6 x 10-kegel reps every day plus “stream stop and holds” in the shower or at the urinal whenever possible. After surgery, I dribbled the day the catheter came out but was dry the next day and ever since. I’m a believer the exercises before surgery really helped.

To the OP’s questions about ED, my nerve sparing prostatectomy went a little awry. After surgery the surgeon told me the cancer was highly concentrated on the left lobe of the prostrate. He said the margin on the LH side wasn’t clear on the first pathology report so he had to re-trim tissue closer to the left nerve bundle to get clear margins on the second check. He said there could be partial damage to the LH nerves as a result, but the bundle was still intact and likely would repair itself over time. I left the hospital with a partial (maybe 3/4) nerve sparring prostatectomy.

Recovery was slow and I never fully recovered to pre-surgery conditions. It took 15 months of VED usage plus 100 mg of Viagra for our first penetrative sex after surgery. For the next 2-1/2+ years years things continued to improve albeit at a glacial pace. Spontaneous and nocturnal erections returned but were usually weak and faded pretty quickly. Enough for self love but for sex I needed max doses of PDE5s for roughly 60% successful PIV sex. I remained hopeful that things would continue to improve although I resigned to the fact I was dependent on VED exercises, pills, and rings for the foreseeable future.

Four years after my NSRP, came the diagnosis that PCa returned. Salvation Radiation Treatments fried the nerves which were spared during the surgery. I’ll never truly know the full extent of recovery I might have achieved from the NSRP. However I believe my recovery had basically plateaued before SRT. So I believe the conditions I described above is about as good as it was going to get.

So in summary, natural spontaneous erections never returned after my partial nerve sparing prostatectomy. Perhaps things would have been different if my left nerve bundle had been spared 100% like the right side was. Although I have my doubts. I’m sure a few lucky men catch the golden ring and walk away from NSRP with no ED or incontinence issues. However, I know eight men, of similar age as myself, who had a nerve sparing prostatectomy. All remain dependent on various ED aides or have just given up on sex. Half of them have long term incontinence issues and two of those got the sling to control that. I think they are probably the norm but maybe there are tens of thousands of men who completely recovered from NSRP and I just never met any of them. I only hope better PCa preventatives and treatment options become available for my sons and future generations.

I don’t mean to be negative or rain on anyone’s hope. I’m simply sharing my experiences through my PCa journey.

[JetAirliner]

Brian188 - I just reached two months since my RP surgery and would love to know the answers to these questions. I’ve tried Cialis but it did nothing for me. I’m still dealing with leakage/incontinence. It has gotten a little better, but feeling yourself piss your pants (in a pad) knowing there is nothing you can do about it is very disheartening.

I sometimes wonder if the alternative, having 3 or 4 goods years, may have been better decision. I know I need to be patient, but there are times I just can’t believe how much my life has changed in the last two months.

Hang in there Brian.

RJ - Had RP three years ago and had all of the same issues that you listed above - but it gets better over time… Viagra/Cialis did not make a difference and IMO, Vacuum pumps and injections are a waste of time

Received my implant 9 weeks ago today and it’s the best investment that I have ever made … My surgeon (Cleveland Clinic) also put in a sling by my urethra to reduce intermittent incontinence and now I am pad free .. The only time I consider the pad is if I know I will be drinking- although we were at a get together recently with friends and I didn’t need a pad - just remembered to use the bathroom more frequently after a few beers … My biggest regret is that I did not consider the implant earlier … Hang in there - your going to be just fine

[RJ_in_Pa]

Thanks guys. Got my VED and tried it today. The advice someone gave about using lots of lube really helped. Erroring on the side of caution, I did not push it to see how hard it would get, but I got my first fullness since surgery. It would not have been hard enough for penetration, but it was enough for some self pleasure, which felt great.

[still_crazy]

I'm 11 months since my RP, which was NOT nerve sparing. Cancer was on left nerve bundle and my doctor said it would be risky to save the other (Gleason 9 cancer). In the pre-op room with my wife and several nurses, the surgeon said, "you won't be able to get erections anymore, but you'll most likely be cancer-free." It seemed like a good trade-off at the time.

I was quite lucky in terms of incontinence and only wore a pad for a week or so. I have zero erectile function without either pumping or injecting. With injections, I'm able to get an erection that lasts for 1 to 2 hours, which is more than enough to satisfy my wife. Unfortunately, I can't seem to orgasm at all with an erection anymore, but have experimented and achieved orgasms, while flaccid, using a vibrator (at the suggestion of a sex therapist). The therapist suggested this type of stimulation might help wake up the nerves to help achieve orgasm during PIV sex. This type of therapy was also suggested, in one study, as a means of helping erections return in men who'd had nerve sparing surgery. So it might be worth a shot. Getting the big O with the vibrator can be pretty satisfying and intense, but I'm wondering if it is in fact de-sensitizing my surface nerve feelings, so I've decided to lay off using it for a while and see if it helps. My wife said there was a time when she was using a vibrator a lot and it made it difficult for her to get orgasms through natural stimulation during intercourse.

Good luck in your adventure... I hope your erections return. Until then, use a VED daily if possible (if you're not having nocturnal erections), and perhaps experiment with a vibrator. Injections might help as well, as they get arterial blood flow into the places that count.

[still_crazy]

I will add one thing regarding how sex is different after RP, and it's a positive for me.
My wife of 30 years was never big into giving me oral sex for fear of me cum-ing in her mouth (she really doesn't like the taste of semen). Now that I can't ejaculate, she gives me regular BJs (after I inject) to provide some initial stimulation to get a good erection, and she seems to really enjoy it. Who would have thought. It's a crazy life.

[ftwabeck3533]

I will add one thing regarding how sex is different after RP, and it's a positive for me.
My wife of 30 years was never big into giving me oral sex for fear of me cum-ing in her mouth (she really doesn't like the taste of semen). Now that I can't ejaculate, she gives me regular BJs (after I inject) to provide some initial stimulation to get a good erection, and she seems to really enjoy it. Who would have thought. It's a crazy life.

You are one lucky man.

For others who are just getting ready for sex after your RP surgery, here's a personal and cautionary statement. Empty your bladder immediately before getting that bad boy excited. When the smooth muscles relax and the uretha joins in the process, an unanticipated spurt of urine can result. This happened to me early on (more than once) while snuggling with my wife. My opportunities for a blowjob were gone forever. Enough said.

[Gt1956]

I will add one thing regarding how sex is different after RP, and it's a positive for me.
My wife of 30 years was never big into giving me oral sex for fear of me cum-ing in her mouth (she really doesn't like the taste of semen). Now that I can't ejaculate, she gives me regular BJs (after I inject) to provide some initial stimulation to get a good erection, and she seems to really enjoy it. Who would have thought. It's a crazy life.

I have the deepest sympathy for prostate cancer survivors. Stange thing is that to the best of my knowledge. In my rather small family tree that is almost all male. I am not aware of a single prostate cancer. A few years ago I pestered my primary dr about doing a psa in my lab work. He does a blood draw on every visit. He said my psa was very low.

My wifes family participated in the research for the BRCA breast cancer gene. My wife is the youngest of four sisters. The three oldest all had breast cancer so my wife thought she was guaranteed to get it. Let me assure you that breast cancer surgery in the late 60's was horrible. So the study did free testing as they looked for the gene. All three sisters had the gene but my wife doesn't. Strange thing is their mother had it & died at 93, never had cancer. The relief to my wife was really high.

So I asked my dr about prostate cancer gene studies like the study my wife participated in. I never had any luck finding any. I thought my family might help the research.

The early story we were told was that the gene was passed down along the mothers line. Basically the gene wasn't in the male section of the genes. My wife has an older brother. He had one daughter that got breast cancer quite young. She kept saying that her dad gave her the gene. Wife & I were skeptical about that based on the 30 year old stories from the study. Strangely, her brother came down with cancer but declined to call it breast cancer. I did some research & seems that the gene can be passed to men after all. He died last spring from what appears to be male breast cancer so his daughter might of been correct.

Long story is. I thought that I would of been helpful a prostate gene study. Maybe not. Have any of you survivors any gene info to add?