1. < Prostate Cancer

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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robertmizek | @robertmizek | Aug 18 10:15am
In reply to @scottbeammeup "Thanks for that. At least I know now I'm not insane. I have my 3 month..." + (show)
@scottbeammeup

Thanks for that. At least I know now I'm not insane. I have my 3 month post-radiation PSA test in two weeks and am seriously considering stopping ADT after that so I can hopefully be "me" again by the end of the year.

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I understand. The oncologist wants me to be on Orgovyx and Zytiga for 20 more months because of the aggressive nature of the cancer. I’m tolerating it well enough but if my quality of life degrades to the point that it becomes unsatisfactory I may have to revisit the issue.

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1 reply
northoftheborder | @northoftheborder | Aug 18 10:52am
In reply to @robertmizek "I understand. The oncologist wants me to be on Orgovyx and Zytiga for 20 more months..." + (show)
@robertmizek

I understand. The oncologist wants me to be on Orgovyx and Zytiga for 20 more months because of the aggressive nature of the cancer. I’m tolerating it well enough but if my quality of life degrades to the point that it becomes unsatisfactory I may have to revisit the issue.

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I'm a sample size of one (so statistically highly unreliable), but my experience is that ADT and ARSI since 2021 have become easier to tolerate over time, not harder.

I guess that's lucky, since it looks like I'll be on them forever, barring any new medical breakthroughs.

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scottbeammeup | @scottbeammeup | Aug 20 10:34am

Upate: I saw my general practitioner today. He recommended trying a supplement called "Horny Goat Weed" and said several of his patients have sworn by it. I've asked my oncologist if it's safe to take with Orgovyx and am waiting to hear back. A couple others have also suggested pelvic floor therapy so I'm looking into that as well.

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northoftheborder | @northoftheborder | Aug 20 4:01pm
In reply to @scottbeammeup "Upate: I saw my general practitioner today. He recommended trying a supplement called "Horny Goat Weed"..." + (show)
@scottbeammeup

Upate: I saw my general practitioner today. He recommended trying a supplement called "Horny Goat Weed" and said several of his patients have sworn by it. I've asked my oncologist if it's safe to take with Orgovyx and am waiting to hear back. A couple others have also suggested pelvic floor therapy so I'm looking into that as well.

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Pelvic floor therapy (including kegels) can be a big help. If your insurance covers physiotherapy, you can find someone who specialises in pelvic floor recovery.

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dmccarthy104 | @dmccarthy104 | Aug 21 10:07am

Is there data to support that this supplement is safe for PC patients to take? If so what's your source?

Thank you.

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scottbeammeup | @scottbeammeup | Aug 21 10:15am
In reply to @dmccarthy104 "Is there data to support that this supplement is safe for PC patients to take? If..." + (show)
@dmccarthy104

Is there data to support that this supplement is safe for PC patients to take? If so what's your source?

Thank you.

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I don't have any data about this supplement. That's why I'm waiting to hear back from my Onco.

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scottbeammeup | @scottbeammeup | Aug 24 2:42pm

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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2 replies
dandl48 Dave | @dandl48 | Aug 25 5:18pm

Guess I'm in the unlucky 50% and it is permanent. I too was never informed if this possibility when I had the 5 treatment SBRT. It could be explained away since I had it almost 4 years ago (9/2000). However, if I was told about the odds, I would have probably still rolled the dice.

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mikewo | @mikewo | Aug 26 10:42pm
In reply to @vancouverislandhiker "100% , you are doing the right thing for sure . Yes those negative thoughts are..." + (show)
@vancouverislandhiker

100% , you are doing the right thing for sure . Yes those negative thoughts are normal, so deal with them the best you can and divert your attention. Also , when you start going to the sun , bring in plenty of water and small micro sessions first ....then longer . I
The Sauna has many Bio-benefits. Read up on what "protein shock " therapies do , ridding your body of extra urea, salts and heavy metals , etc . I usually crave pickles after a Sauna ( common) to get my eltrolytes . BUT my point here is work your sweat glands in the sauna , but start slowly and work up to 15 minutes at 3 exposures per vision ! 🙂 . Also read up on the benefits of Sauna . Got use to it when I was working out of Budapest - very common . Looks of "Eye Candy " in those saunas in Budapest as well. Lovely gals ! 🙂

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Lucky to live in Phoenix Arizona and don't need to go to a sauna. I just walk out my back door at this time of year.

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ozelli | @ozelli | Aug 27 4:04am
In reply to @scottbeammeup "Well, I just read in a British journal that this side effect occurs up to 50%..." + (show)
@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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Really? 50%?

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

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