I was diagnosed with prostate cancer in march of 2023 Gleason 3+4. went to Mayo Az for a robotic prostatectomy. Had a great surgeon he did a bilateral nerve sparring surgery in Dec of same year. Erectile dysfunction and Incontinence were my greatest fear and I have both. It’s been a roller coaster ride of emotions. I’ve been researching rehabilitation and treatments but no one seems to have a solid plan. After six months my psa is undetectable. I am looking for feedback from men going through the same situation. Any feedback would be appreciated.
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Ssport
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I was diagnosed with prostate cancer in December 2023. Had a nerve sparing robotic prostatectomy in February 2024 in the NHS. . A really great surgeon, who did great nerve sparing.
It's now August, like you, I've had 7 months roller coaster ride of emotions.
I'm now probably 74% dry on the incontinence front. Still having to wear pads every day to prevent leaks.
On the man side, taking 5mg cilas every day, but still can't get an erection at all. Also lost length in my penis, despite using vacuum pump.
I can now, even with a soft penis, manage to masturbate and achieve a good orgasm, but of course, it's totally dry.
I leak a lot of urine when trying to masturbate too, my urology nurse, says its par for the course unfortunately , but should improve.
I do Kegel exercises three times a day to help improve my pelvic floor.
I think my friend, there is no easy fix, just exercises, and patience. My psa level is also undetectable.
Hi Neil thank you for the reply. It seems like we have the exact experience except for orgasm. I describe mine like if you need to sneeze and it builds up and you don’t sneeze. I find some are better than others. I also lost length right after surgery I lost about an inch and a half. I also use a ved and I have gained an inch back. Do you think we will ever get even close to normal again?
Hi budIt's taken me months to be able to manage a wank, with a reasonable orgasm with a soft cock. Not the best, but better then nothing. It's just the constant leaking of pee while I'm doing it. Need a towel beneath me always.
I have used a vacuum-pump a bit, not over keen to be honest. Feels strange, the pulling effect. Regarding penis length loss, Mmm? I'd say I've lost around a good inch, which I really couldn't afford to loose, not be so well endowed to start with. I reckon now, using the pump, I'm only around 5" at full stretch.. It doesn't appear to have come back in length at all.. But then I think, Hey, I'm alive, apparently cancer free now, zero psa at the moment, Feel healthy, so we've just to keep hoping things " downstairs" start to improve! 😊
I'm 4+ years after prostatectomy at Mayo AZ. I'm 62 years old. It took me about 2 years after prostatectomy to see any measurable erection success on 100mg of Sindenafil. Wakeyguy63 has great advice please be patient, positive, and don't give up exercising your penis to start waking up. I'm probably an outlier on my 2 year mark as other guys succeed earlier. Based upon my experience I'll probably be on Sindenafil the rest of my life. I also had to seek a psychological help on dealing with prostate cancer, prostatectomy, etc. Facebook group sex,love,&prostate cancer has alot of info too. Best regards!
Hi Bika thanks for the reply. I wonder if we ever get back to baseline with out the use of drugs or mechanical devices. Hearing you are seeing progress at two and even four years gives a guy some hope. I wish you the best
I'll add one bit of advice I found quite pragmatic - it's one that, I think, goes counter to the way a man naturally likes to think.
Caveat: you don't reveal your marital/partnered status - what I'm mentioning here pertains to my experience in a man-woman relationship, a marriage of 30+ years. Can't speak to other situations. (PS - I'm now 2 years 5 months post-RP, and still apparently improving.)
A sex therapist I saw (around 6 months), after describing my situation, gave this piece of advice which proved very helpful: focus on my wife's pleasure. As I discovered, the good news is that women have lots of options in the enjoyment of sex, and if I learned and employed them, I could find encouragement for *myself*, lessen my own "loss of manhood" feeling by substituting a feeling that I had *improved* my lovemaking skills compared to before when I was naive to all this, and that sustained my motivation to keep on trying to conquer the post-RP ED despite (as others have mentioned) the fact that I may be in this battle for a very long time, several *years*.
And of course, it keeps my wife engaged and continuing to look forward to helping me recover for the long haul, because she's looking forward to each "practice session" with anticipation of joy rather than dread of failure.
My analogy: I'm like a baseball pitcher who has suffered a major shoulder injury. I want most of all to return to the sense that I'm a pitcher again (i.e. to be a man again). To do that, truth is I'm going to have to throw a LOT of practice pitches to get there. Starting out, I can't even lob the ball to home plate, so it's going to be a long recovery. But having a reliable catcher, who's also motivated for my success, helped/helps a lot.
Hi manO thank you for the reply. I met a lady four months after my diagnosis I explained everything to her about prostate cancer and the side effects. Her reply was no big deal we work with what we have. I’m not sure she really grasped the realalety of what was about to happen. We had six months of the best sex I’ve ever had. After surgery she is still working with what we have. I describe our sex life as an ice cream Sunday with out the cherry on top. We’re working on finding the cherry. I don’t know what I would have done without her. She has been my rock..so in August of 2025 we are to be married. I feel for the men out there who have to go through this alone
ssport, BTW I think you didn't mention your age, and that can have a significant impact. In my case I'll be 70 by year's end, and when a man reaches that age it seems the medical community is a LOT less interested in trying to help you recover - they apparently make the assumption it's all over for you and/or it's no big deal any more for you, without asking your opinion or intention. So it becomes a recovery you'll have to completely drive by yourself, without "volunteered" medical help.
For incontinence, the best thing is continuing the Kegel exercises. Unfortunately, "nerve-sparing" is somewhat meaningless--at least in my case. I had the same procedure (and Gleason score) as yours, but my penis took about a year to recover to a point where I could get a partial erection. I am single so I never tried having intercourse. I am able to have successful masturbation (dry), with sometimes ejaculating urine (I actually found that somewhat enjoyable--at least something shot out!). My incontinence, now 7 years on, is minor, requiring only a small pad to absorb.
My advice is to be patient. Some improvement in tumescence may come in time.
Hi Scott, when i was 49 years old, I experienced everything you listed above. Do your kegel exercises, eat well and exercise. Give yourself time to heal. The Dr will give you daily cialis and a pump, with me nothing worked until i started using injections named Trimix. Once you get used to it, you will be fine. Hang in there
You have failed to report your age and I think your recovery is greatly dependent on that factor. I was 4+3 age 66 in 2019 and have recovered neither function and frankly I don't expect to 5 years out. Nerve sparing surgery is great and I was at a good hospital also in Johns Hopkins, but those nerves still get damaged and as you get older there is probably less ability to recover as in all illnesses. Colds seem worse....muscle pulls take longer, etc. I had some radiation to two lymph nodes and my PSA (although recurrent) has been stable at 1.3 for the last few months and I am holding off hormone therapy on the advice of my oncologist until my PSA reaches 2. I am sorry I can't be more optimistic, but keep in mind that this disease is different for everyone and no two of us are alike. there is always hope. In most of our cases, we are hoping medical technology catches up to us.
I also had a friend who had implants and surgery to raise his bladder. He swears by it, but it is a little extreme for me at present....
I will be 61 8/15 I have been trying to use Trimix. I finally have a dose that seems to work but the ache I get is sometimes unbearable and the base of my penis and the injection site is sore for a couple of days. Also I can not orgasm when on Trimix.
I'm now 29+ months post-RP. From approx. months 7 through 15 or 16, I tried trimix (and bimix). I had a similar "ache" as you call it (I think), although I'd describe it more like a sensation of swollenness/fullness/soreness/puffiness. That plus the fact that the stimulation-sensation nerves near the head of the penis, which play a major role in enabling orgasm during penetration, also apparently underwent significant damage (like the erection-trigger nerves) were enough of a distraction such that orgasm was impossible.
In the meantime, without that component, my wife and I needed to develop some amazing "alternative" intimacy practices that were quite successful - including other ways for both of us to orgasm (alas, now serially as opposed to before simultaneously, but one must learn to "play the hand you're dealt.")
So now, I'm thinking of trying trimix once again to see if any improvements. The first time, I missed the orgasm part so much and made that the focus of my trimix attempts, and was so frustrated when that couldn't succeed. Now however, I know I can count on other ways to achieve that, so my goals are different: just to once again experience those sensations I've been missing. And to help my wife experience it also.
Ironically, almost in a semi-humorous way, one might say my goals have subtly shifted: before, my main aim was to once again experience the thrill of my own orgasm through penetration. Now I've come to realize how that goal may be "beyond reach". So the new "humbler" goal is to enable my wife's experience of orgasm through my penetration. That just might be achievable (since none of her nerves were damaged), and if achieved, could give me a sense of progress (and added accomplishment)
I can orgasm with manual stimulation and it seems like I get a little more blood flow. It is definitely better than my first six months. My girl friend has always been able to orgasm from intercourse that is a big part of what we’re missing. The Trimix is definitely helping. I have so much aching from the Trimix I wouldn’t use it to masturbate but I will use it just to have an erection and feel Ts orgasm. There is too much aching for me to orgasm. I’ve tried Bimix didn’t have any pain but I didn’t achieve much I may try it again. I really appreciate this forum. It’s good to here from men going through the same side effects it gives a guy a little more hope
Hey Ssport. Happy Birthday! I hope you have something fun planned. I’m 53, married to a woman and am 36 months out from RALP with nerve sparing 3+3 Gleason. I’m in the healthcare field, so might have a little bit different take.
1. We all shrink after surgery partly because the urethra is cut and pulls the penis closer to the body. At rest you’ll likely be smaller than you were prior to surgery, but it’s really meaningless. I say ignore it.
2. Take Cialis daily for penile nerve improvement, not to achieve an erection. One of the best pieces of advice I received, was to start on 5mg right away. I believe over the years it has been helpful. My philosophy is Cialis is more like it is a vitamin than a vaso stimulator.
3. Pump as regularly as you can and leave the cock ring attached for at least 5 minutes. Even with nerve sparing we don’t get the night or morning erections we once had, so we need to replace them. The pump helps regain muscle memory, rigidity and erection length. I sometimes pump until it is extremely painful, but several urologists have told me to keep it up. Pumping is like going to the gym for the penis. I know it’s hard to keep it up, but try.
4. I’ve tried viagra at several dosing strengths and I’m still not experiencing the results I want. Lately, I’ve been dosing at 100mg and then pumping prior to intercourse and I can’t really tell if the viagra is working or not. I just keep experimenting.
5. My routine after 24 months was definitely tri-mix. It did get me to full strength after several months of different dosing strengths, but like others, the residual pain was aggravating. I moved to Quad Mix (added lidocaine) 6 months ago and am at 3 units/injection (.3ml) The Quad Mix does have a faster, less painful recovery time for me. For intercourse at 36 months I’m now alternating between pump/ring/viagra and Quad Mix injection.
6. Like others have said, patience is important. It is a journey and you have to keep experimenting with options. From my own personal experience, I will say each year has brought much improvement in overall erection quality and confidence. Stay positive and continue to experiment.
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