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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@readandlearn
been on ADT for 4 mos...gotta do 20 more months..no desire right now..I mean the girls look attractive but just not interested. I am 73..also, I somehow feel betrayed by sex..cant explain..kind of scared of it right now...dont want to jack up my PSA..
And to think sex used to be just about my fav hobby !
I dont think anyone other than guys who are on ADT can understand...I guess under the right circumstance I could do it ...amazing what power a hormone has...and fear.
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4 ReactionsOnce you stop ADT, your testosterone may return to where it was before, a lower level than before or not at all. Many of the side effects of ADT are the result of low or absent testosterone, not the drugs. I think it is important to deal with this now, rather than later. I was fine after my radical prostatectomy but ADT gave me ED. I tried Sildenafil and Tadalafil as well as Trimix. None of them worked well enough. Since I never lost my libido, I got a IPP (inflatable penile prosthesis) implant a year ago. My wife and I continued to have regular sex without penetration for the three years I was on ADT before my IPP. We are both very happy with the implant. I am 74 and have had PC for almost 10 years. I have been off ADT for 14 months and my testosterone is coming back very slowly.
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10 Reactions@jimgaudette I will be 74 next month. Lucky for you and your wife that you were able to continue satisfying nonpenetrative sex while on ADT. For myself, I can derive some pleasurable sensations without a full erection, but cannot get fully aroused or have an orgasm. As a result, my interest in trying has waned, though I do derive emotional pleasure from satisfying my partner. Because I am on blood thinners I do not think Trimix or
a vacuum device will be an option. 🤷♂️
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5 Reactions@rbtsch1951 I would suggest experimenting with your partner and see what works and what doesn’t. We get set in certain patterns over our lives and when circumstances change and the old patterns no longer work, we are challenged. This challenge can only be met with self care, an open mind and an understanding partner. When we are young, our ability to have an orgasm is mainly hormonal. When we age and have less or no hormones, having an orgasm is mental and emotional. This requires a paradigm shift and a change in how you experience the entire situation. I think that paying attention to the details rather than the goal is important. Start over with a beginner’s mindset and get rid of your expectations. Also, maybe try masturbating to get more familiar with your new paradigm without the pressure of a partner to relate to. Don’t think in terms of failure or success, but rather focusing on getting to know your current reality better and enjoying the process.
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8 Reactions@rbtsch1951 I had non-nerve-sparing RARP in Feb 2021. which means I have not been able to maintain an erection since, nor have I ever used any mechanism or drugs to attempt to do so.
I hope this is not too explicit for this forum, but I think my comments below will help some.
I was never multi-orgasmic before surgery, but was after, until going on ADT in Oct. 2021. I stayed on ADT until March 2024, & after 3 months my desire returned. I am again multi-orgasmic.
So, in my experience, it is NOT "use it or lose it". I am in my eighties, & both my parents lived to be over 100 without significant impairment, so genetics may be a factor in my case.
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6 Reactions@readandlearn glad to hear the outcome for you was favorable and that your sexual satisfaction was naturally recovered after ADT without specific efforts during your nearly 30 months on treatment.
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4 Reactions@xahnegrey40 agree with you , after 15 months of no sex I’m surprised due to nothing working that I don’t even want to try lately , last Lupron shot was April so maybe my appetite will increase soon
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3 Reactions@graybeard46
It has been 7 months since my last 3-month Lupron injection following 44 radiation treatments and I have absolutely no Libido with PSA < 0.1 and Testosterone < 9 for my last two blood tests at 1 month and 4 months ago. I have had almost unbearable side effects that forced me to stop Lupron at 4 months. After 7 months my side effects have tapered just a little, but the serious ones include 24 hour a day sweats that prevent me from even having a sheet to cover me at night plus jock itch, headaches, aching fingers and toes, sore muscles, leg cramps, and brain fog. I am 83 and in good physical shape except for 5 heart bypasses 18 years ago. I exercise vigorously for more than an hour 4 days/week and can outperform anybody over 70 at my gym.
My urologist would prefer that I continue Lupron for 14 more months for my Gleason 4 + 4 cancer but understands the damage Lupron is doing to my quality of life. He thinks my severe side effects may be because I am not a large person (180 pounds) and I had low testosterone even before Lupron.
Reading many articles has led me to believe that the vast majority of men over 80 will have significant side effects from Lupron and poor success in recovering from side effects because many of us already have low testosterone and our system struggles to recover. Maybe dosage level to older men needs to be reduced since low testosterone due to age means overkill by normal Lupron dosage. I do not believe one dosage level is good for all ages and physical body size groups. American pharmacies seem to ignore the physical size of the patient and believe one dose fits all. I think they are very wrong and just do not want to bother with tailoring the dose to the individual's normal testosterone level and physical size.
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4 Reactions@pesquallie I wish you luck my friend, I’m 79 and was also in great shape for my age , I regret getting the second Lupron shot my muscle and bones definitely have been effected. Life continues to be a challenge and smiles for me are rare. Our cancer isn’t as curable as I was told with all these side effects and no sex 😡
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5 Reactions@graybeard46
You are right. Chemical castration is rarely explained or used to inform the hormone patient of the likely side effects. Web sites say that hormone drugs might affect your libido when they know full well that 90% of the men over 80 will never have another erection and 10% will commit suicide.
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