ED after prostatectomy? Any first hand experiences overcoming it?

Hey, thanks for your comment.

Like you, I love cycling. My perineum hurt for months after RALP and luckily I had a recumbent trike available that I bought after back fusion surgery in 2023. I’ve been riding that almost exclusively this year and have enjoyed it a lot.

I tried a VED about 6 weeks after surgery. I bought a battery powered unit. It hurt so bad that I discontinued it after a few weeks and threw it away. I’m 9 months past surgery and I may need to rethink a VED and would consider a manual one this time.

BiMix works for me but seriously interferes with intimacy. I’m using it mostly for exercise and rehab.

Manual stimulation without BiMix results in some amount of erection and almost always an orgasm. We’re trying to make it a part of regaining intimacy but don’t have that figured out yet. I’m on ADT which complicates things and dampens arousal so it’s a struggle.

I’m going to retry daily Cialis and see if I can live with the cold-like side effects.

Good luck on your journey!

My surgeon at Northwestern insisted I use injections 3X a week for a year to get maximum recovery. However, I wish I knew about and used a vacuum pump a few times a week instead, as using the injections was uncomfortable and I did not use as often as he suggested. The surgeon's goal was to keep getting blood to the area. My local specialist still has me using the vacuum or injections 2X a week to keep things healthily while I am on ADT for 18 months, which is now 6 years since surgery. I only need 2-3 units out of a 100 unit syringe to do the job, which I think is in part, due to the disciplined vacuum use.

I hope this helps and I wish you the very best of luck!

Hi @syoozi, here is a link to a video of a very frank discussion, "Restoring Sexual Function After Prostate Cancer Treatment", which I found very informative. Features Dr. Tobias Kohler, an expert "men's health" urologist at the Mayo Clinic in Rochester, MN. Hope this is helpful to you and your partner.

I forgot to mention one specific procedure, and that is to install an implant in the penis.

I attended a webinar last week where they talked about different procedures for resolving erection problems. At the end the doctor talked about doing implants. He said they were very successful and almost everyone was really pleased with the results. An implant guarantees a good solid erection. It is a long term solution.

The life span for an implant is generally considered about 10 years. Almost every educational video about erectile dysfunction I've seen turns out to be sponsored by an MD specializing in penile implants or Boston Scientific, who makes the most commonly inserted penile implants.

Post robotic nerve sparing prostate surgery was given a cialis prescription and told to get a vacumn device and use it to prevent loss of length and function. Have bought several devices from smut stores and from a urology health store. The device from the health store is overpriced and quite poorly engineered in my opinion. The devices from the smut stores work well and are about 1/4 the cost or less of the 'medical' device.
Initially using any of them was incredibly painful. I have gradually become accustomed to using the device and the pain is now what I would call very mild pain or discomfort.
While the devices do cause my penis to grow some, it is not an erection and trying to use any of the constriction devices I have purchased is off the charts painful.
In variably after using any of the devices I end up with some discomfort for the rest of the day.

What is more of a concern to me is that I have zero desire for sex, I just don't care. Have tried manual stimulation and that's a waste of time and effort. Nothing happens, feeling is largely absent or painful.
I have had my testosterone level tested and that's normal so the implied reason for my absolute lack of desire is in my head. The surgeon has implied that but has not explicitly stated it. I would be far happier if doctors would just be blunt.

How long has it been since your surgery Mark have you also had radiation? If so, how long has it been since your radiation ended? Lastly, are you on ADT?

It's John actually. My surgery was a bit over 6 months ago there was no radiation or chemo and I physically recovered well. All the incisions healed promptly and I have had no issues with incontinence probably because the urologist had me doing pelvic floor exercises before the surgery. I found them quite easy to do once I figured out how. Looking at the line by line breakdown in the billing from the surgery there was no ADT administered when I had the surgery and there has been none since . They tested my testosterone level when I told the surgeon about the issue and that's normal.
I do take depakene for siezures and have done since I was 19. It is the minimal dose since that works for me, I only need 1 of them per day.
The absolute lack of desire is what truly vexes me. I just don't care. I would not even be trying to solve the problem except I'm married and have been for 30+ years.

@john5223 I can identify with your description, especially at 6 months. At five months I heard about a tensioning device (restoreX) and began using it. It was a discipline, not a pleasure. At 18 months or so I tried a VED and that seemed to me to do a better job at the same task--but only when following a very methodical script, which involves repeated cycling from pressure to no pressure, a good seal at the base, and a lot of patience. Full erection is only reached in these (about one minute) cycles after 10-15 minutes, and 20 minutes is considered a maximum length session. Also, any time there is pain the recommendation is to immediately release pressure.
Since I didn't try using a VED at 6 months (or 1 month, which I believe now is considered optimal), I have no idea what that would have been like, but I assume results would have been less and slower to achieve in each session. At least in my case, these sessions do not end in orgasm, just engorgement.
The restoreX was priced as a medical device, and I only recently realized there are similar (less fancy) tensioning devices sold as sex toys that are 5-10% of the cost. I haven't tried a medical-level VED as I figured I could try up to 10 similar sex toys before I would spend the same money. I assume that using a medical level device for penile rehabilitation would still be a chore, not self-pleasuring. But again, if there is actual pain I stop immediately and if a session is not resulting in engorgement, I still stop when I reach 10-20 minutes.
My wife believes that the VED* has led to better mutual stimulation although it is still quite different from pre-surgery experiences and so she encourages me to continue with the discipline. I still do not have any significant frequency of early morning erections, which is what the discipline is intended to replace--the natural tensioning of the smooth muscle tissue in the cavernosal cavities of the penis.
*With a single case study it is very difficult to sort out variables such as time from surgery, progressive desensitization from nerve trauma, development of alternative pathways, changing of the mental imaging, etc. When using shots+, VEDs or PED5 inhibitors (viagra, cialis) to achieve erection, it becomes very clear that erections and orgasms are not the same although there certainly is overlap, and that overlap seemed higher before surgery. I try to focus on erotic pleasure rather than penile performance or trauma each time we are intimate and I think that is becoming somewhat easier over time. I am of course envious of others (or at least admiring?!) who for whatever reason seem to find this easier than it has been for me.
+I was using trimix shots from about 3 months to 30 months since PED5 inhibitors didn't work and gave me objectionable side effects. At about 30 months I was able to use silenafil (viagra) with manageable side effects, so that has also been helpful. Unfortunately erections with trimix did not very consistently translate into great experiences of physical intimacy (for this particular couple.)

Underwent robotic nerve sparing surgery to remove prostate.
The surgery went well, the cancer is gone and I have had no problems with incontinence.
At first follow up with surgeon was given a tadalafil prescription and told to get a vacuum device and use it.
Using the device is just unpleasant. After a few minutes everything just hurts and I stop. The surgeon concurred and said if it starts to hurt stop. This has continued for months I use the thing for a few minutes a day then when the pain starts I stop. While it is clear that blood is reaching my penis it is not an erection.
On the extremely rare occasions (3 times in 9 months) when it does not cause pain it is still what I would call unpleasant and I am uncomfortable for the balance of the day.

The surgeon keeps touting the injections but my concern with them is if they make things hurt like the vacuum device how long will that last. Will it be minutes, hours or days ? The pain from the vacuum device is severe, on the pain scale it's a 9 or 10 . But with the vacuum device when I stop the pain stops, mostly. The thought of the pain occurring and not stopping is not at all a pleasant one. The surgeon can not answer the question and indeed cannot even tell me definitively how long an erection will last after an injection. She just seems to think they are the answer. I'm at this point just assuming I may be in the cohort that never recovers sexual function and have simply given up on ever having sex or orgasm again.

I thought it might be worth asking people here that have had the surgery and are using the injections a few questions.
How exactly do the injections work is it injection = erection or injection + stimulation = erection?
How painful are the injections?
How long does the erection last?
Is the erection ever just painful?
Do you even have the desire for sex or do you just not care and only do the injections for your partner?