ED after prostatectomy? Any first hand experiences overcoming it?

Posted by robertmizek @robertmizek, Oct 3 11:55am

I originally had brachytherapy in 2020. I chose that so I could continue my active sex life with my wife. The cancer responded favorably and the good life continued for three more years. Unfortunately PCa came raging back and the only option was salvage prostatectomy so now I’m dealing with severe ED 8 months after surgery. Mild erections are possible without Viagra but require a lot of stimulation to get things going. Even that is a victory because I’m also on ADT. I guess I have a strong constitution.

My doctors have said that it takes at minimum of 12 months for the nerves to heal and that it’s more often 18-24 months. 😡

What do other POST SURGERY PCa survivors have to say on this? Anyone have good news?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Take the daily 5mg Cialis! I was given an RX but ZERO instructions on why so I never used it. I had read that if your erections were strong before surgery you would have a good chance of a complete sexual recovery….NOT!!! The cialis would have definitely helped in retrospect.
In fact I have not had any success 5 yrs post op with any oral meds. My Uro suggested TriMix but then recurrence reared its ugly head and I am now on ADT prior to radiation.
Don’t know if I’ll even care about erections after all this but time will tell. Gonna be 70 soon and honestly the urges just aren’t what they once were anyway. Best to all

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@heavyphil

Take the daily 5mg Cialis! I was given an RX but ZERO instructions on why so I never used it. I had read that if your erections were strong before surgery you would have a good chance of a complete sexual recovery….NOT!!! The cialis would have definitely helped in retrospect.
In fact I have not had any success 5 yrs post op with any oral meds. My Uro suggested TriMix but then recurrence reared its ugly head and I am now on ADT prior to radiation.
Don’t know if I’ll even care about erections after all this but time will tell. Gonna be 70 soon and honestly the urges just aren’t what they once were anyway. Best to all

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So sorry that you weren’t told why to take Cialis! That sucks. It might have made a difference. I tried daily Cialis after surgery but discontinued it after the side effects bothered me too much. I was told to try manual stimulation with or without a partner to wake things up and there were and continue to be some signs of life there.

Sorry that you’ve got recurrence. I am on ADT and still have some libido although it isn’t what it used to be. I take BIMIX injections as part of penile rehabilitation and can achieve an erection suitable for intercourse.

If recovering sexual health matters to you NEVER GIVE UP!

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After my nerve-sparing prostatectomy @ age 74, I achieved what I regarded as full return of sexual function (albeit with Viagra). Here's a link to the story I wrote about the journey that got me there: http://bikrutz.org/triblog/?p=3516

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Feel fortunate. I was not able to have nerve sparing done. Still, I feel good to be ( so far) cancer free

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My partner had cryosurgery in June 2024 for his 2nd occurrence of prostate cancer. After his 1st wave (10 years ago) he still could get an erection. This 2nd time he is very sad about ED. Is there a method that is not injectable? He cannot take a needle to the penis. Also is reluctant to do any research, so I am helping out. His doctor has not mentioned daily low doses of Cialis but I have seen it talked about. What mg is a low dose considered? When you talk about: "use it or lose it", do you mean manual stimulation even if there is no erection? Thank you sincerely for this help. It is so needed.

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Hey Robert... I had RP (laparoscopic) surgery last August (about 13 months ago)... Was lucky not to require additional treatments as cancer was isolated. Surgery was kind of brutal. Multiple skewers (tools/camera) through core abdominal muscles and cutting and suction (also had complication of previous hernia surgery mesh that was somewhat "in the way"). I was 62 and 3/4 at the time. I had never experienced any form of ED and was very strong in that regard. Got no real assistance in that regard post-surgery. Surgeon basically said - "oh yeah, you won't have erections for a year..." Had to initiate active treatment myself to try to get back on track. Talked with a buddy who went through similar who was super-helpful. My family physician is a friend who was extremely helpful when asked (he had similar ED-creating surgery himself years earlier). So, he prescribed Viagra and/or Cialis - told me to try/experiment - see what worked best for me. Started at about the 9-month mark (should've been sooner I guess - but my primary struggle post-surgery was incontinence - which I have made remarkable strides with, also had a freshly torn A-C ligament in left shoulder - ugh!). Even before drugs, I was getting some nocturnal blood flow - but very partial. Also could create some blood flow without prescription with significant stim. But a far cry from pre-surgery. The scripts have helped somewhat - probably getting me to about 70-75% with significant stim. Like you, I am hopeful for non-drug full return, but it is not there yet (I am not interested in injections or pumps at this point). My family physician told me he had recovery all the way to 3 years out! I also had significant pain along perineum post-surgery - I have even been doing red light therapy almost daily along that track - bought my own light panel (supposed to help cellular recovery at the mitochondrial level). I am determined to recover fully - but it is work. There are some good resources out there - google: "Victoria" "A Touchy Subject" - she has some good discussions, videos, options... I am treating this like any other injury from a "re-hab" perspective - many have taken time and determined effort. Best to you!

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@syoozi

My partner had cryosurgery in June 2024 for his 2nd occurrence of prostate cancer. After his 1st wave (10 years ago) he still could get an erection. This 2nd time he is very sad about ED. Is there a method that is not injectable? He cannot take a needle to the penis. Also is reluctant to do any research, so I am helping out. His doctor has not mentioned daily low doses of Cialis but I have seen it talked about. What mg is a low dose considered? When you talk about: "use it or lose it", do you mean manual stimulation even if there is no erection? Thank you sincerely for this help. It is so needed.

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Both Cialis and Viagra are options, but really don’t work most of the time. You can try 100 mg of Viagra. There’s even a generic type what you can get in 20 mg pills.

A penis pump would get you an erection. You have to put a tight ring around the base of the penis to keep it erect. It may not get as hard as you’d like. It’s a good way to at least train your penis to get an erection and maybe then the Cialis or Viagra will work. I was given one right after I was finished with surgery, it did work but not real comfortable to use.

The only real successful technique is Trimix or a combination of one or two of the drugs used in Trimix. You have to go to your urologist to learn how to use it. The needle is very thin and small, easy to do.

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@mtb63

Hey Robert... I had RP (laparoscopic) surgery last August (about 13 months ago)... Was lucky not to require additional treatments as cancer was isolated. Surgery was kind of brutal. Multiple skewers (tools/camera) through core abdominal muscles and cutting and suction (also had complication of previous hernia surgery mesh that was somewhat "in the way"). I was 62 and 3/4 at the time. I had never experienced any form of ED and was very strong in that regard. Got no real assistance in that regard post-surgery. Surgeon basically said - "oh yeah, you won't have erections for a year..." Had to initiate active treatment myself to try to get back on track. Talked with a buddy who went through similar who was super-helpful. My family physician is a friend who was extremely helpful when asked (he had similar ED-creating surgery himself years earlier). So, he prescribed Viagra and/or Cialis - told me to try/experiment - see what worked best for me. Started at about the 9-month mark (should've been sooner I guess - but my primary struggle post-surgery was incontinence - which I have made remarkable strides with, also had a freshly torn A-C ligament in left shoulder - ugh!). Even before drugs, I was getting some nocturnal blood flow - but very partial. Also could create some blood flow without prescription with significant stim. But a far cry from pre-surgery. The scripts have helped somewhat - probably getting me to about 70-75% with significant stim. Like you, I am hopeful for non-drug full return, but it is not there yet (I am not interested in injections or pumps at this point). My family physician told me he had recovery all the way to 3 years out! I also had significant pain along perineum post-surgery - I have even been doing red light therapy almost daily along that track - bought my own light panel (supposed to help cellular recovery at the mitochondrial level). I am determined to recover fully - but it is work. There are some good resources out there - google: "Victoria" "A Touchy Subject" - she has some good discussions, videos, options... I am treating this like any other injury from a "re-hab" perspective - many have taken time and determined effort. Best to you!

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Thank you for your frank and forthcoming response. We post surgery PCa patients are most often left to figure this stuff out for ourselves and few of us are confident and open enough to discuss this sensitive subject. Sexual health is just part of overall health and we have to be courageous enough to discuss it openly.

I’ve watched post surgical ED wreck relationships that were solid. At age 54 one of my friends committed suicide after he couldn’t regain sexual function and his wife divorced him because of lack of intimacy. Another friend of mine and his wife gave up all intimacy a couple years ago and live separate lives together. These stories scare and sadden me and I believe that many couples struggle with intimacy and give up.

I never heard of the website “A touchy subject”. I’ve skimmed through it and will dive deep into the subject. Thanks for telling me about it.

A month after the catheter came out and without any medical guidance I took matters into my own hands trying to wake things up without the benefit of Viagra or Cialis and the results were encouraging. I wish the medical community would be brave enough to suggest that men start with self stimulation to figure out what works just like we had to figure out how things worked when puberty hit. Instead men and their partners are left to believe that one day the “Erection Fairy” will sprinkle pixie dust on our penises and life will go back to normal. As far as I know that never happens.

I like your perspective that some form of self stimulation is just a form of re-hab after an injury. Our nerves were in fact injured. They need to heal and regenerate. None of us should be ashamed that it’s part of the process and it’s up to us to figure out what works. Our partners can help but the responsibility isn’t their job; it’s ours.

Personally I don’t care what it takes, I’m going to beat cancer and regain the intimacy that was lost when I was recovering from surgery, going through radiation, and now struggle with ADT. I continue to make slow but steady progress and do not plan on giving up anytime soon.

Good luck to everyone here struggling with ED while on a journey with PCa.

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@syoozi

My partner had cryosurgery in June 2024 for his 2nd occurrence of prostate cancer. After his 1st wave (10 years ago) he still could get an erection. This 2nd time he is very sad about ED. Is there a method that is not injectable? He cannot take a needle to the penis. Also is reluctant to do any research, so I am helping out. His doctor has not mentioned daily low doses of Cialis but I have seen it talked about. What mg is a low dose considered? When you talk about: "use it or lose it", do you mean manual stimulation even if there is no erection? Thank you sincerely for this help. It is so needed.

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1) Other than injections and penile implants, the treatments include the drugs called PDE5 inhibitors, which include tadalafil and sildenfil, (brand names cialis and viagra) as well as vacuum erection devices [VED].
2) tadalafil has a longer decay curve than other PED5 inhibitors, and a low dose would be 5mg.
3) the penis contains what they call "smooth muscle tissue" or "cavernous smooth muscle cells" or the "corpus cavernosa." [There are two. Each is a corpus cavernosum.] Like other muscles, they can atrophy with disuse. People with normal erectile function have night time erections (during sleep) that keep these muscles from atrophy. After trauma and/or nerve damage from surgery, ablation [like cryo], or radiation, these can stop. The longer these muscles go without stimulation the more they may atrophy, making recovery of function more difficult. VED therapy*, PED5 inhibitors, and injections all [may] provide engorgement which exercises this smooth muscle tissue--using it so as not to lose the ability to use it through prolonged atrophy.
*VED therapy involves using successive cycles of vacuum around the part of the penis that protrudes from the body to produce engorgement of the corpus cavernosa. This exercises the muscles without regard to whether intimacy and sexual stimulation are involved or follow.
4) Physical stimulation may be more necessary for erectile function after trauma and/or nerve damage than previously, when sexualized thoughts and emotion might have been enough on their own. Hands are one of the most flexible and available instruments for such stimulation.

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@robertmizek When I replied earlier to @syoozi I hadn't read your original post. I guess I should be happy that's my biggest issue post-RALP. Pelvic floor pain that interfered with biking was my second biggest, but that seems resolved now, about 30 months out. ED, not so much, but I do have some hope. Trimix was my go to when I couldn't handle the PED5 inhibitors because of side effects. It worked for erections, but interfered with intimacy for both of us. I still have some in the refrigerator. I tried a RestoreX tensioning device when I heard about it a few months after surgery, but in hindsight I think a simple (and cheap!) VED from amzn would have been a better choice. I have used that over the last 6 months intermittently for therapy, but not for intimacy. The last few months I've retried sildenafil at my urologist's urging and been able to tolerate it, and that's been an improvement. Who knows where the journey will go from here.

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