Total inability to have an orgasm post radiation

Everyone's experience will be different, but as I mentioned in another thread, it took well over a year after radiation before that came back for me. I'll guess that the fact that you're already able to have a full erection so soon after radiation and while still on ADT, is a *very* promising sign (obviously discuss with your medical team).

I just stumbled on this long footnote in Dr Walsh's book:

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Measuring Sexual Function in Gay and Bisexual Men. Here's the research desert again. In many studies of erectile function after localized prostate cancer treatment, most or all of the men have been presumed to be straight, notes Amarasekara, and "the instruments measuring sexual function were validated mostly in straight cohorts" Other surveys have been developed, including the International Index of Erectile Function for Men who have Sex with Men (IIEF-MSM). As of the writing of this book, a new scale to measure sexual function in receptive partners was in press in the Journal of Sexual Medication using data from the RESTORE-2 study. It is called the Sexual Minorities and Prostate Cancer Scale (SMACS). Such a scale Amarasekara continues, is much needed because it is difficult "to measure sexual function or pleasure in receptive partners," because this "is likely multifactorial: for anal stimulation the pudendal nerve is involved; there are pelvic nerves that affect the rectum, and there's the hypogastric nerve that affects the prostate. It is unclear how prostatectomy or radiation impacts function in anal sex, and there's currently no way to track changes in function after treatment."
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Thanks. Guys in my support group tend to have the opposite problem--orgasm but no erections. I guess with this *#&$*#&-up disease it's always something. Appreciate the input.

I’m sorry for your situation. You must feel frustrated and with good reason. The fact that you can get an erection seems like a positive development. I hope I’m correct for your sake.

I’m not aware of any studies that track this and the medical community often shies away from sharing anecdotal outcomes so I’ll share what I am aware of.
I have a number of friends who have gone thru surgery, radiation, and ADT and struggled or still are struggling to regain sexual function including the ability to orgasm. As I understand it the nerve bundles that control sexual response are sensitive and subject to trauma from surgery and radiation. One of my friends who had a prostatectomy lost all ability to have an erection and orgasm for nearly a year before regaining both then losing both again for 6 months after he needed salvage radiation. He reminds me of his experience every time I share my personal frustration. I’m 3 weeks post salvage radiation and achieving orgasm is a hit or miss proposition that even when successful isn’t as powerful an experience as it was prior to radiation. I’ve decided to be patient and focus on other ways to get enjoyment out of life in the meantime. For example I saw “Deadpool and Wolverine” yesterday and am still smiling from the experience.

Personally Im hopeful for you that things will improve significantly once your testosterone returns after you stop Orgovyx. ADT is reported to reduce libido and there is little doubt that libido and sexual response have a connection.

Better days are coming! Never give up!

What I have read is that the ability to have an orgasm is somewhat separate from the ability to get and keep an erection adequate for penetrative sex. I believe this is true. In fact, using the trimix shots, I found that the resulting (reliable) erection actually interfered with orgasm because my member was more tender and painful. With this in mind, I've worked on rebuilding the pleasure and arousal cycles congruent with my new realities, whatever they happen to be. Using this approach, sexual intimacy is more satisfying for both of us. (I am in a monogamous marriage.) Mutual pleasuring is the term I remember from my days as a marriage and family therapist, and that has required some new learning since the radical prostatectomy. Others on this forum have pointed out that this can actually mean a net improvement in mutual (wholistic) intimacy.
I know my nerves are different, in spite of the nerve sparing. How much is trauma from which I might recover and how much is permanent, I don't know. My experience has definitely been less positive than what some others of you have reported. Since I stopped using the shots regularly I have tried to be more consistent about using a vacuum erection device to stimulate the smooth muscles in the member. I believe this is making some positive difference although it certainly hasn't been an instant fix or a cure all. I do notice increased blood flow in the area for at least a day after the VED therapy.

While I did not receive what you did, before high dose proton radiation, I received a total of three shots, two of Firmagon and one of Eligard. That was early last year, I successfully got through treatment and am doing well. Just after I Rand the Bell, I attended a webinar from the Prostate Cancer Foundation regarding hormone therapy and recovery. It was stated that the shots last longer than they state and men like me it could take 18 months to clear. I was concerned about sexual function, hence me getting radiation and like you all “was” working but no orgasm, a dry orgasm. Well, as of now 15 months later, my numbers are good, slowly recovering and, while I’m not getting a full load, I am getting semen out, just the clear fluid. So, hold on, hormone shots are a bitch and you just have await recovery. It’s not easy but it should come back. And I only received those 3 shots before, none since. Hang in Brother, you got this and just relax and keep up hope and trying.

Thanks for responding. My problem is that I have no orgasm AT ALL. I'm totally prepared for a dry one or a retrograde one. What scares me is that everything I see online says that men can still have orgasms after prostate cancer but they will either be dry or they'll orgasm without an erection. Neither of these apply to me. I've tried the pump, a vibrator, my good old right hand, etc. and nothing. The doctor just said "yeah, that happens sometimes" which was neither helpful nor encouraging. The nurse said to wait until I was done with ADT and then see what happens before moving on to trying medical solutions like Oxytocin.

I understand your concern and agree that there is a lot of things the doctors don’t tell you or even suggest. Luckily for me, I haven’t had to resort to any aids only Rosie Palm and her 5 sisters. I was highly doubtful that I’d be “normal” but so far the signs are good. I’d say keep researching and keep up treatment and see what happens after the injections are done. I know it seems and looks bleak, but hang in there and stay the course. And while I do have an orgasm, I am nowhere what I was like before all this, if I abstain from pleasure for a few days, I’ll have a small load, if I try daily or multiple try’s, while I’ll be hard, I won’t have a load. Stay the course, take it one day at a time, better days are ahead. Check the Prostate Cancer Foundation website, they have had a few webinars and you can view them. Stay strong Brother and I’ve got your back.

Good for you, you are absolutely correct that recovery is a spectrum and part of the journey with prostate cancer.

When prostate cancer returned last year, and my first opinion was that there was no chance for cure, the last thing I cared about was sexual function. When I got my second opinion and was told that I would need salvage surgery, salvage radiation, and two years of first and second generation ADT I still didn’t care about it. Now that surgery and radiation are behind me and my care team believes that I have a good chance for cure I care about sexual recovery too.

For reference did you have radiation or surgery? How long ago? If you had surgery, was it nerve sparing?

I had high dose Proton radiation with hormone therapy before the radiation. I had a total of 3 shots, the initial 2 were Firmagon, and that totally sucked, followed by one of Eligard. That was it, waited a few months , during which I was marked and fitted. In May 2023, I received the radiation. And while no complications, I had to learn how to hit the head and control my stuff. Slowly, the effects started to where off and I learned more of the effects and how long they could last, once I absorbed that, I became more at ease and optimistic. Doing the radiation was my choice, I was terrified to be cut and my surgeon stating that I wasn’t a good candidate for surgery. And my research discovered it’s just as good, if not better than surgery, if it’s an option. Once tested and diagnosed, my team worked hard and fast to get me treated. They genetically a core from my biopsy and my cancer was just over the line to aggressive. I was Gleason 4+3/7 stage one. My psa was nearing 6 and slowly rising, it’s now holding at .21 and my testosterone is coming back up. Hope this helps.