Total inability to have an orgasm post radiation

Posted by scottbeammeup @scottbeammeup, Aug 12 2:25pm

Since finishing radiation treatment two months ago, I've been completely unable to have an orgasm. I'm on Orgovyx for 2 more months, but still have good erectile function it's just that I can't finish either with or without PDE-5 inhibitors. I go at it until it's literally unbearably physically painful but nothing.

Is it possible the orgasm nerve was destroyed by radiation? A close friend recommended that I try a large dose of THC--has anyone heard of that? Is that part of my life basically over?

This was NEVER mentioned as a possible side effect of radiation OR ADT and I guess just one more thing to be upset about.

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@ozelli

Really? 50%?

That doesn't seem right to me...
Could you give a link to that British journal?

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I will find it for you. I just copied the relevant part to my "Cancer" file I keep. "Orgasmic dysfunction (anorgasmia) has been reported by 5-78% of men ..."

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@scottbeammeup

Well, I just read in a British journal that this side effect occurs up to 50% of the time in men who have radiation therapy and can be permanent. I feel really angry that no mention was made of this by either the radiation oncologist or the medical oncologist. Both did point out that ED was a common side effect but was treatable. Neither mentioned total, permanent loss of orgasm. I can't even find this mentioned in U.S. medical journals, just British ones. I feel like I've been deceived and lied to.

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Since my Decipher test showed low risk cancer and still confined to the prostate, I was offered, but allowed to decline ADT. The proton therapy did treat my seminal vesicles too. I declined ADT.

I just read a study from about 8-10 years ago in The Journal of Urology that showed 100% of men on ADT lost their ability to orgasm after a period of time. Their "Conclusions" from the study:

"CONCLUSIONS: ADT results in significant orgasm dysfunction with loss of orgasmic capability in all patients with time and reduced intensity and increased IELT in all. Patients undergoing ADT should be counseled regarding changes in orgasm."

Note: ILET is Intravaginal Ejaculatory Latency Time.

The study reference can be found at: https://doi.org/10.1016/j.juro.2013.02.2752 . I didn't see where the study addressed what occurs after stopping ADT, however. I do think urologists need to keep up on their own field specialty and not be afraid to speak frankly with their patients about all possible side effects. I think they "assume" their cancer patients are more concerned with the cancer than with the side effects, but they would be wrong a lot of the time, yes?

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@5galloncan

Since my Decipher test showed low risk cancer and still confined to the prostate, I was offered, but allowed to decline ADT. The proton therapy did treat my seminal vesicles too. I declined ADT.

I just read a study from about 8-10 years ago in The Journal of Urology that showed 100% of men on ADT lost their ability to orgasm after a period of time. Their "Conclusions" from the study:

"CONCLUSIONS: ADT results in significant orgasm dysfunction with loss of orgasmic capability in all patients with time and reduced intensity and increased IELT in all. Patients undergoing ADT should be counseled regarding changes in orgasm."

Note: ILET is Intravaginal Ejaculatory Latency Time.

The study reference can be found at: https://doi.org/10.1016/j.juro.2013.02.2752 . I didn't see where the study addressed what occurs after stopping ADT, however. I do think urologists need to keep up on their own field specialty and not be afraid to speak frankly with their patients about all possible side effects. I think they "assume" their cancer patients are more concerned with the cancer than with the side effects, but they would be wrong a lot of the time, yes?

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It sounds like the study is about ejaculation, not orgasm. Many people here (including me) have reported the ability to have "dry" orgasms on ADT, even after radiation. It was tough/non-existent at first, but it has gotten easier for me over the three years on ADT.

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@northoftheborder

It sounds like the study is about ejaculation, not orgasm. Many people here (including me) have reported the ability to have "dry" orgasms on ADT, even after radiation. It was tough/non-existent at first, but it has gotten easier for me over the three years on ADT.

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No, it's all about orgasm, not ejaculation. Please read it. "...1398 Orgasm Profiles in Men on Androgen Deprivation Therapy (ADT) for Prostate Cancer."

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@5galloncan

No, it's all about orgasm, not ejaculation. Please read it. "...1398 Orgasm Profiles in Men on Androgen Deprivation Therapy (ADT) for Prostate Cancer."

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Ah, you're right. I was focusing too much on "IELT".

But also note the wording of the summary:

"ADT results in significant orgasm dysfunction with loss of orgasmic capability in all patients with time and reduced intensity and increased IELT in all. Patients undergoing ADT should be counseled regarding changes in orgasm."

So, if I may paraphrase my reading:

1. All patients on ADT lose some of their orgasmic capability over time.
2. All patients on ADT experience reduced intensity and longer IELT (Intravaginal Ejaculatory Latency Time).
3. Patients should be counseled about these changes in orgasm this before taking ADT.

Note that it doesn't say that all patients lose the capacity to have an orgasm completely over time (the experience of many of us here in the forum would contradict that, and their own addition of "increased IELT" wouldn't be necessary), but that 100% of patients experience *some* level of diminishment in orgasm over time on ADT (which is consistent with what people are reporting here).

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@northoftheborder

Ah, you're right. I was focusing too much on "IELT".

But also note the wording of the summary:

"ADT results in significant orgasm dysfunction with loss of orgasmic capability in all patients with time and reduced intensity and increased IELT in all. Patients undergoing ADT should be counseled regarding changes in orgasm."

So, if I may paraphrase my reading:

1. All patients on ADT lose some of their orgasmic capability over time.
2. All patients on ADT experience reduced intensity and longer IELT (Intravaginal Ejaculatory Latency Time).
3. Patients should be counseled about these changes in orgasm this before taking ADT.

Note that it doesn't say that all patients lose the capacity to have an orgasm completely over time (the experience of many of us here in the forum would contradict that, and their own addition of "increased IELT" wouldn't be necessary), but that 100% of patients experience *some* level of diminishment in orgasm over time on ADT (which is consistent with what people are reporting here).

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I don't think they worded their conclusions succinctly, because it's confusing to read partial loss and total loss in the same sentence. When they say, "...with loss of orgasmic capability in all patients with time.." I interpret that as meaning all of the patients lost the ability to orgasm. Indeed, some of the text in the narrative preceding the conclusions, says, "...Mean time to complete loss of orgasm = 5±2.5 months on ADT, with 12% capable of orgasm within 6 months of starting ADT, 8% 6-12 months and none beyond that time-point."

So again, I read "complete loss of orgasm" and "none beyond that time-point" to mean all patients in the study lost the complete ability to orgasm after about a year and some before that. But I'm not a doctor and I didn't take the ADT. I would hope they did some sort of followup to see if any regained their ability to orgasm when/if they stopped the ADT.

Also, I found some indication that "push button" orgasms has been studied in relation to implanting a device in the body that could trigger orgasm, but it's from many years ago and who knows where it is today. Maybe Elon Musk could figure out the science since he's into brain implants anyway. See https://www.bbc.com/future/article/20140321-orgasms-at-the-push-of-a-button.

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@5galloncan

I don't think they worded their conclusions succinctly, because it's confusing to read partial loss and total loss in the same sentence. When they say, "...with loss of orgasmic capability in all patients with time.." I interpret that as meaning all of the patients lost the ability to orgasm. Indeed, some of the text in the narrative preceding the conclusions, says, "...Mean time to complete loss of orgasm = 5±2.5 months on ADT, with 12% capable of orgasm within 6 months of starting ADT, 8% 6-12 months and none beyond that time-point."

So again, I read "complete loss of orgasm" and "none beyond that time-point" to mean all patients in the study lost the complete ability to orgasm after about a year and some before that. But I'm not a doctor and I didn't take the ADT. I would hope they did some sort of followup to see if any regained their ability to orgasm when/if they stopped the ADT.

Also, I found some indication that "push button" orgasms has been studied in relation to implanting a device in the body that could trigger orgasm, but it's from many years ago and who knows where it is today. Maybe Elon Musk could figure out the science since he's into brain implants anyway. See https://www.bbc.com/future/article/20140321-orgasms-at-the-push-of-a-button.

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It you're interpreting their conclusions correctly, then they're clearly wrong, because I can have a dry orgasm after 35 months on ADT and ARSI (following 60 gy of radiation to the prostate). That's always the danger of a "100%" conclusion — it's trivally easy to refute. 🙂

Again, they might be confusing ejaculation with male orgasm, as many used to do, both inside and outside the medical community. I would believe a 100% loss of the ability to ejaculate.

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It was a relatively small study, but it did focus on orgasm and they don't say in the abstract what manner of ADT was used. Maybe that matters. For somebody on ADT who has had either prostatectomy or radiation treatment (or both) and they do lose all ability to experience an orgasm, it could be explained by the ADT and maybe there's hope of recovery. But that's something you think would be addressed from the beginning with the patient's urologist, or oncologist or whatever doctor is overseeing their treatment. They're supposed to know this stuff, but my experience in reading these prostate cancer forums and from the men in treatment I've talked to, the patients seem to know or find out more about what's going on here than many of the doctors in too many situations. Why is that? If I had this problem come up, I wouldn't give up on finding a solution somewhere down the road.

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I have an appointment with one of the authors of this study, Dr. Mulhall, in three weeks and am going to ask, since this is a 2013 article, if there was any followup on whether orgasm returned or if it's yet another indignity I wasn't told about because they knew if I was I would have declined treatment and just taken my chances. It seems like every week I learn of some new horrible side effect that no one ever told me about.

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