Use It or Lose It: How important is it to be proactive about ED?
I see frequent commentaries in online message boards such as this regarding prophylactic penile rehabilitation following RARP but less so on RT and ADT regimens. Not unexpectedly, following SBRT and the start of ADT I find my libido nonexistent and have ED (which was not a problem before treatment). Even with tadalafil 5 mg daily I have no nocturnal erections and absent any desire, even masturbation seems more effort than it’s worth. I’m not concerned about now; but wonder what will happen when I am off ADT in 12-18 months (if all goes well) and my libido returns? What have others experienced? How important is it to be proactive ?
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My libido came back in about 3 months.
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4 ReactionsAfter you started ADT, how long did it take for your libido to drop? I am about four weeks into Orgovyx. My doctor said it is important to stay active, so I take tadalafil 5 mg each day even though it does not give me an erection, use the VAC pump three to four times a week for about ten minutes each time to keep blood flowing, and give myself Trimix every three to four days. So I guess use it or lose it. Hope this helps.
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2 Reactions@readandlearn How long were you on ADT? What did you do to preserve function during that time?
@tj1967 I had my first Lupron injection in early September and within 4-6 weeks my libido was gone. I am on blood thinners and read that a VED can cause bruising and bleeding in that setting so have been afraid to try it. I think Trimix might be an issue too because of anticoagulation. I have an appointment for consultation at the UCLA men’s health center, but they cannot get me in until January.
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1 ReactionMSKCC has a sexual health team for guys who had RP . I use a trimix injection a couple times a weekend as I was told the erectile tissue does shrink if not used.
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1 Reaction@rbtsch1951 I was on ADT for 2.5 years before going off it. I had no desire during the time I was on ADT.
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3 ReactionsMy experience with this —> Being proactive is critical, both in having a plan in place, and in executing to that plan. It’s important to also understand that ADT impacting the “desire” is different from ADT impacting the functionality.
Well before starting hormone therapy (Eligard for a localized 4+3=7), my medical oncologist and I discussed the likely side effects and how to minimize/avoid them.
I had 28 sessions of hormone therapy (during April-May 2021 @ 65y), SpaceOAR Vue, and 6 months of Eligard.
My testosterone level dropped to 3.0 ng/dL; my PSA dropped to < 0.008 ng/mL.
Physical side effects of ADT were minimal due to engaging in resistance training exercises (which my MO had highly recommended).
> https://m.youtube.com/watch
As for libido, my MO told me that the key is to continue “doing it,” despite the “want to” not being there. I was told that it’s a “use it or lose it” scenario. And despite having no libido while on Eligard, everything still worked.
(Though I have no data to support this - only my MO’s advice that it would work; and I think it did - my experience not having ED while on ADT might also be related to me ramping up my resistance-training and cardio programs to minimize the side-effects of hormone therapy; that might(?) also have the side-benefit of keeping the blood flowing “down there” as well; It’s all about hydraulics so, keeping the blood flowing would seem to be important. Libido eventually returned to normal when testosterone returned to normal.)
My wife later told me that if she hadn’t known I was undergoing radiation treatments, she wouldn’t have realized it from any change in me. And as for the zero libido, though I did mention it to her once in a while, I went through the motions anyway, for her sake as well as mine (in order to keep our relationship as normal as possible).
That was 4-1/2 years ago; seems like a distant memory. And life goes on…….
You’ll get through this.
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6 Reactions@brianjarvis "... have the side-benefit of keeping the blood flowing “down there” as well; It’s all about hydraulics so, keeping the blood flowing would seem to be important."
Technically, blood is always flowing to the penis. When an erection occurs, the flow OUT of the penis is restricted, causing the penis to swell up.
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3 Reactions@brianjarvis I meant to indicate 28 sessions of proton radiation and just two (3-month) injections of Eligard.
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1 Reaction@readandlearn True. But exercise causes vasodilation by widening blood vessels allowing for more blood flow. This not only delivers more oxygen and nutrients to the working muscles, but improves blood flow everywhere.
Note that the reverse is true as well —> in cases of cardiovascular disease when there are clogged arteries, there are often ED issues.
We’re a system of systems, and what we do in one part of our body can have benefits (or detriments) throughout.
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