Looking for Honest post-surgery ED expectations / feedback
Comments
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My urologist was up front with the potential post op consequences of surgery during my Active Survalence period. When he referred me to his partner/surgeon he was also straight forward about post surgery consequences (incontinence/no erections). While my post-surgery visits with the surgeon were focused on recovery from surgery and successful removal of prostate he did refer me to a physical therapist. She was much more helpful recommending pelvic exercises and assisting with proper performance of them as well as insight on expected lifestyle recovery regarding incontinence and erection expectations.
As my wife and I discussed surgery and potential post-surgery issues we decided that having my prostrate removed and not having to worry about the risk of cancer spreading was our priority. The relief of not having to wonder about my next PSA or biopsy has been worth it. I’m happy with my continence after three months. I did have the added bonus that my RN wife was a circulating nurse for my surgeon in the past so she had direct knowledge of the DaVinci robots and my surgeon’s skills.
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thx kittyslayer….I don't think my urologist/surgeon was as upfront… I think the consequences were downplayed in favor of the cancer would be removed…only later did I realize MANY MANY men live with prostate cancer and die with prostate cancer…but it's not what kills them, it's simply something that exists within millions of men and increases as the male population ages….so millions die WITH prostate cancer, not BECAUSE OF prostate cancer….I didn't really know that until after I had my surgery….
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hi jc…you had mentioned you can't get to 100% without injections….I am having some morning erections that seem to get me to 75% but probably not enough for penetrative intercourse…and it seems they are the hardest I have attained even more so than trying by myself and taking pills, etc….so my question to you is if YOU had any erections in the morning that were significant without pills or injections? still not there yet but I am hoping that is a good sign of progression in the healing process….? was it for you or was nothing happening in the morning????
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Hi,
From what people have talked about here and my own experience a lot of guys plateau out at around 24 months. Viagra, pumps, injections all good ideas.
Dave 3+4
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I am a few weeks late to this thread. I am one of those who used to camp out on this site but now I only visit once or twice a year. Living life became more consuming than commiserating about losing a facet of life.
I was 57 at detection and 58 when I submitted to a RALP. Was healthy (except for PCA) and physically fit. Got three opinions before allowing the chief of urology at a famous hospital perform the surgery. He did not rule out impotence or incontinence but he downplayed the possibility because of the robot. That was June 2009. I have been impotent ever since. With realistic humor I tell those who ask that Woody hasn't seen the sun shine since 09.
For about three weeks after the surgery I was also incontinent and that was much worse for me. To hell with erections, I did not want to spend the rest of my life wearing DePends. Fortunately, I regained control but remained impotent.
Eight years later I was diagnosed with rectal cancer and that malady and its cure knocked the wind out of me. Being impotent no longer registers on my list of life issues. Having self-pity because you have no shoes remedies itself when you see someone without any feet.
So to address your original question - I had the RALP 16 years ago and I have been totally impotent since the day of the surgery. Nothing improved the condition.
Jim
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I had surgery at 51, mostly continent from catheter removal. Would leak on a sneeze or after having too many. Not an issue anymore. Some ED but, overcome with viagra. I can get by without it. Had sex within weeks of surgery. Im definitely one of the lucky ones.
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Honest feedback? Well, you asked for it, @nativemi!
I had a traditional, not robotic, radical prostatectomy in 2015. Five nights in hospital. Could have gone home after four nights, but I just wasn't quite ready. During night three, I was experiencing nocturnal semi-erections. This was both good and bad. I was obviously happy when I realized what was going on, but what woke me was the pain of my catheter being stretched! 😩
I was capable of 'doing the deed' five weeks after surgery. 😉
I underwent a 33-dose course of salvage radiation six months after surgery, due to the failure of my prostatectomy. It was described at the time as a 'mop-up' procedure. Radiation eventually killed my function more than the surgery.
For several years before surgery, I was experiencing a degree of ED anyway, and my libido has never been fantastic. After my salvage radiation, over time, things did become more difficult. Viagra or Cialis are useless if the desire isn't there. I experimented with penile injections, which were effective for a while, but I ended up having a bad experience with them which resulted in damage to my grub. I also experimented with toys such as a hollow strap-on, but worsening incontinence which showed itself in the heat of the moment was a huge turn off. A solid strap-on poking out through Y-fronts while wearing a pad was also effective, but for reasons which I won't go into here, also became problematic. Since then, the fire has gone out completely. Coupled with the fact that a surgical procedure I had almost two years ago to deal with my gradually worsening incontinence (I had an 'ATOMS' sling installed in me) resulted in damage to my pudendal nerve. I was always aware that after my prostatectomy, ejaculation was a thing of the past, but nowadays due to my most recent damage, I am actually INCAPABLE OF ORGASM.
I am now completely flaccid 99.9% of the time, with fleeting mild semi-erections on rare occasions. I sometimes try to masturbate while watching porn, and sometimes, despite being flaccid, I get to the edge…then…nothing.
Get this - I'm only 62.
Everything is a result of my original prostate cancer diagnosis and treatment, re-treatment and downstream corrective treatment. At the end of the day, I don't regret much, because I'm still alive. So, when I see septuagenarians or octogenarians here complaining that that they refuse treatment because they fear that they won't be able to wet their dicks anymore, I'm happy to deflate their egos. They've had a good run.
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Hi,
We are all walking wounded whether it’s ED or urine leakage. I have learned to accept my “side effects” and get on with living my life as if I never had cancer. Like you and many others, just glad to be alive and successfully fighting Prostate cancer. The key is learning to adapt and move forward.
Dave 3+4
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well, I actually had a couple morning erections back at 6 months and 8 months and I thought "yippee! this is it - I am healed!!!" and then….nothing for months after….so yes….I was overly confident something good was happening early on…turned out to be a fluke???? (what else do you call it if it happens early on…then nothing for months after)….. but, at roughly 12 months I would get maybe only 1-2 erections in the morning for the whole week…so, unlike when normal pre-surgery when they happened EVERY morning…so…some electrical msgs are happening subconsciously….but…still not 100% firm erections…still only 1/2-2/3 hard…you couldn't have sex with those erections…yet
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thx for the honest feedback…so, the surgery did not get all the cancer so they had to irradiate too…but didn't that mean you not only had your nerves snipped but they zapped radiation over them as well???? that sucks…am I right in thinking the doc should have said to you the chances of this affecting your sexual performance in the future was now GREATLY ENHANCED????? I've read medical literature on the either / or but not BOTH….I'm sorry man…that suuuuuuuuucks….. sucks…. ok you are slightly older than me…I am going on 59…but I can masturbate and orgasm even if I don't get hard….usually I get at least 1/2 way there (not enough for penetrative intercourse) and can take care of me to get to the endgame… weird it feels good but sometimes my guy wont respond at all even if my brain says it should feel good…does your penis just not feel it at all now because of the surgery + radiation??????? sorry to hear…
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jim- your story is exactly what I was hoping to hear…the honest feedback that is so difficult to find/read about… I KNOW its a possibility about non-recovery but at your age and health status (similar to mine) they really tell you to "expect" a recovery, even if it's with the help of pills…when you returned to your urologist did they ever give you a reason why your recovery never happened…did the doc spare both nerves? 1 nerve? etc… agree would rather not wear a diaper and just do the minor leakage 15 months later but….when I drink urine LITERALLY just leaks out and I can't even feel it happening until I feel the wetness in my crotch…it's like the alcohol completely relaxes whatever muscle down there keeps the urine in…so now I drink less or not at all…but dribbling still happens…it's a pain but…as you said - comparatively speaking more important than having penetrative sex in the grand scheme…….how have you coped sexually? have you given up sex entirely or do you have a partner and it's still somewhat satisfying with whatever tricks/toys/technology you might utilize….?
thx ryann09….
I have begun to have firmer erections and length coming back in the last 2 months…but whereas I was at 1/2-2/3 firmness and length 2 months ago I feel I am at 2/3-3/4 now…. assume I will lose 1/2 " length due to the surgery (if literature can be believed) but would be ok with that if firmness comes back….I dont think pills help me as it doesnt seem to make a difference in my firmness or length - at least viagra does nothing…skeptical cialis is helping but I still take it …. sometimes it seems to have NO effect so my recovery is still positive but spotty and unreliable…. I have never heard of the 3 year window for recovery…most of the literature I read says its 24 months and then you get what you get…..but usually doesn't get better after 24 months as a general rule…yes, might be an exception or 2 but the research I've read doesn't look out to 36 months….
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hi jc…this thread is confusing so I apologize if I have already responded but…it's odd to me that morning erections DO NOT require any stimulation whereas normal ones would…so, I take it to mean morning erections mean the chemical msgs are subconsciously firing and my body is responding..but it's 100% weird, then…that when I WANT the msgs to be sent and even have a partner helping me…I sometimes CAN NOT get hard…so far one of my morning erections was the hardest I have been since surgery…but have not been able to replicate that for sex with a partner yet…very odd….
and yes, still frustrating…he works, obviously…but not when it's most convenient ….odd!
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