Hey gents. I'm new to Malecare (as of June 2020) and am looking forward to being part of this community of gay men who are prostate cancer survivors. My nerve-sparing, robotically-assisted radical prostatectomy was Sept, 2019. (80% of my right nerve bundle was spared, 100% spared on left.) Recovery was uneventful fortunately, but now living with expected erectile dysfunction (ED).
I'm trying all the methods of penile rehab with little results. Dealing with some discouragement and grief. However, I know it's still early to see some restoration of erectile functioning so trying to be patient; my urologist says to give it 2 years. Signed up here to learn from others' experiences and not feel so alone in this new way of life. Say hey if you feel so inclined.
P.S. Learned of Malecare through a great article in "Gay and Bisexual Men Living with Prostate Cancer", edited by Jane Ussher, et al., Harrington Park Press, NY. Helpful anthology of info.
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MRBoston1963
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Welcome. Is that lighthouse a metaphor for an erect penis? You seem to be enlightened in the ways of penile rehab (pump,ED meds, trimix). I hope it comes back soon.
Ha! I never thought of the subliminal message I was putting out there by sharing a pic of the Scituate lighthouse. I guess it's wishful (hopeful?) thinking! It's a fav spot of mine on Boston's South Shore. Thanks for the confirmation that I am playing with the right stuff to see what might eventually work. At the very least, I am relieved to be cancer free.
Welcome to the community. You are fortunate to have found this group not long after RP. Here you will find a great group of men who have PC in common, although wide ranging circumstances, conditions and outcomes.
Here you’ll find most men can relate to your frustrations and others such as Tall_Allen who offer excellent insight and advice.
I was diagnosed with PC in 2010 at 52
y/o and RP in Jan-2011. The bad news for me was not having support between diagnosis and surgery and a surgeon that offered little to no recovery advice. I flew psychologically and emotionally solo trying to figure out the best options to treat my PC. Incontinence has been off/on more/less over the years, but less of an issue than ED. To date, I suffer with ED and none of the medications have worked. I’m single and my Urologist (Not the one who performed my surgery) pointed out that Trimix is not covered by insurance and since I am not sexually active, what’s the use? 😏
Besides dry not sexy at all ejaculations, when I do experience any measure of climax sensation, it’s less than satisfying and has been the case from day one! Meanwhile, I try to masturbate frequently hoping this time will be different. It never is.
I could go on about my devastated quality of life and emotional roller coaster, but I’ll spare you my pity party. The good for you is that it’s still early. You’re in a good place to receive and respond to advice from others. You can try different therapies/options and exercises to help with your recovery. I didn’t find Melacare until many years after my surgery. You on the other hand, found this group less than a year after yours. This puts you in a great position to react to your specific set of circumstances.
Be patient and take responsibility for your recovery. Share your experience, ask questions and take advice from men who can relate and have traveled this road longer and tried different options. You’re certainly not alone on this journey. Wishing you all the best in your continued recovery! WillP
Will, thank you for your kind and quick response. I am sad to hear of your experience. But also glad that we have found others here on Malecare to bounce ideas and questions off. I am currently having many of the same responses to various treatments as you. I am trying to not get discouraged yet. I think having found this group will help with that. Plus I have a supportive husband. Thanks again for your kind response. Michael
Hi Mr. Boston (wasn’t that an old brand of booze).
Welcome to the group!
Keep the faith friend! I had an aborted prostatectomy and then radiation/ADT. I’m in a different boat... I have the ability to get erections, but have to work like hell to be open to use it. My sex drive is near nill, when I used to be the initiator in my marriage. Do my husband and I have been adjusting to our new roles!
I highly recommend daily rehab work... pumping, masturbation, viagra/Trimix, anal stimulation, frequent Kegals. And mostly... self acceptance (meditation practice has helped me)... accept things are different (easier said than done, I know) and nurture yourself along on this journey...
Hey Rich. Thanks for your kind, fast and supportive response. I have been admittedly slacking on the PR. Gotta get back with the program. And the holistic approach, yes, is helpful. Ah yes, role reversal in my marriage is a growth point for my husband and i, as well. I too have felt the diminished sex drive. I have historically been on top so am starting to explore my bottom side too. Jury is still out on that one. Thanks again for your honest and engaging response. Michael
You can still enjoy being a top, MRBoston! I'm not selling something; but I know of a device that enables penetration with little or no erection...this may take your sex drive to a higher level. Message me.
I did the rehab every day for 2-3 months... then pandemic hit and the changes in work/home/stress etc took over... so I can relate to the need to “keep it up!”
Ha! Yes, it's a challenge to fit everything in. Question: are you noticing any shrinkage? I was warned by the urologist who's leading my penile rehab (who's different than my surgeon) that that could be a fallout if I don't keep on keeping it up, to borrow your phrase. That was not historically an issue in my past, but now, sadly, it's more of my norm at this time. You?
I have noticed some shrinkage... more in my testicles (used to be proud of my big balls...) but some in my penis too. Viagra helps to have a fuller erection, but yes, the pump is the best gage. Where I used to fill the pump before treatment, there is now a gap of 1/2-1”.
So... this process of treatment, facing cancer, has pushed me further along a spiritual path, and realigned some priorities... Big balls were great, but life is more important! Love, enjoying connections... on all levels... has become much more meaningful.
Shrinkage is inevitable since a section of your urethra, the length encased in the prostate, is removed. The end of the remaining urethra is then attached to the neck of the bladder, which, although flexible, will be attached to a shortened urethra. I had the same exact surgery in the middle of May, but my orgasms are as intense as ever (it helps to have visualization skills), albeit dry, but am also experiencing ED. I know, orgasms without a full erection. Who knew?
Welcome to our group. We have men here who are not only compassionate, and with a sense of humor about it all, but knowledgeable as well. I hope you feel comforted and encouraged here. I do have a few suggestions from my own experience that may help; you can message me privately if you wish to discuss.
Hope everything improves. It takes a lot of patience along with the frustration.
Your good mind set will help.
We love Boston. Had a great time there a few years ago. Met a bartender who hasn’t been outside of his neighborhood in decades. Couldn’t understand why in California we don’t normally use bricks for building due to the earthquakes.
Welcome Michael. Keep going. Your lucky to have a supportive husband. When my doctor explained to me about my options with the cancer, I asked him didn't he just have some pill I could take. Sadly, medical science is not that good yet. It does take time to recover. Get yourself a specialist post-RP rehab doctor. It could be a long journey. Grieving over your loss is part of that. All the best
Sorry to hear that you had to join our club. It's not one that anybody wants to join but here we are. You will get a bunch of great information here from guys who actually have experienced this stuff.
You had asked about shrinkage, it does happen and can be severe. I was doing bimix shots 3 times a week and everything was good. My wife lost all interest in sex a few years back, and would give me a bunch of crap everytime I injected. I stopped the injections. Loss was minimal from surgery but now it's a huge issue. I'm about half the size I used to be. During the day it's sucked up into my body. Looks more like a clitorus versus a penis. I had always hoped to regain my foreskin and know I have.
Just make sure to keep blood flowing in it. Without it, atrophy takes over and it's not a pretty sight.
I'm 3 years since surgery. Life is good again. The recovery was a little rocky but that smoothed out. The only thing that I have really lost is ejaculation . I can do everything else that I want to do. I even wound up buying another Goldwing motorcycle because of the prostate cancer , I needed an escape device.
Clearly you are not alone. I have done the same rehab. I am not 18 months from surgery. I get occasional nocturnal erections, that is all. I have tried everything including injection. Injection has worked but at the cost of a lot of discomfort/pain in the perineum. These could be insertive erections if I could tolerate the pain; I can't. So I have reached the decision at 76 that erections will remain a pleasant memory. I am saddened but basically OK with that.
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but now, sadly, it's more of my norm at this time. You?
ED 10 months after surgery 
Post prostatectomy when to start having anal sex?
Helpful Hints for Gay Men With Prostate Cancer
RP Aug 2018, Depression Jan 2019
