The other side of ADT: Hey Fellas, I am... - Prostate Cancer N...

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The other side of ADT

Hey Fellas, I am posting in hopes that some of you will post your experiences after completing ADT. My biggest challenge right now is the ADT. I really want to feel sexually attracted to my partner, but as much as my brain knows that I love him, but a 0% testosterone level and no libido, has me so frustrated. Has anyone gone through ADT and regained their testosterone level as well as the desire for sex. I am also doing sexual rehabilitation therapy with Trimix, but it mostly hurts because I am not turned on. No matter how much I inject I never get fully erect. I think this is because the mind body connection is missing without testosterone. I'm grateful to be alive and that I have a great chance at curing this cancer thing, but sometimes I just find myself thinking the way I feel will never change. I welcome all feedback.

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I hear you and I understand. I experience some of what u feel.

Not always, but much of the time, I feel my life is better now. I dont always feel this, and I may not always feel this in the future, but I enjoy each day, work on my recovery, including pills and trimix.

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Hi Dreamweaverman,

I'm not sure from your posting whether you have just finished ADT or whether you're still on it.

If you're finished, then the recovery of testosterone depends on your age and the length of time you were on ADT. The older you are and the longer you were on ADT, the longer it takes for libido to return. I had four months of Lupron treatment starting at age 57. I'd say it was five months before my testosterone began to return and six before I felt that I was feeling something like the sex drive I had before ADT. Reading your profile it looks like you were on degarelix for 4 months starting at age 51. Degarelix is more powerful than Lupron. Maybe it takes longer to wear off. But I would hope that you'll be getting back to normal reasonably soon. In the meantime, I think you should do what you can to stimulate your partner and give him a good time. I bet you'll be surprised to find that, when he gets excited, you will too.

Good luck with it.

Alan

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Hey Alan, thanks so much for sharing your story with me. I have been on for just about 6 months now, and doctor is recommending another 6 if I can bear it. I am really trying on the intimacy front. But doing the trimix sometimes hurt when I attempt penetration. I am just a little frustrated, as I have been really aggressively getting treatment as soon as I received my pc diagnosis last July. I am determined to keep my head up and continue down this road to recovery, but knowing there are others whom have gone through the same experience and are back to a somewhat normal sex life helps a lot.

Thanks again

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I was able to get erections while on Lupron, but only after I got really aroused - usually about when my wife reached an orgasm - which excited the hell out of me. I had zero interest in sex while on ADT. I forced myself to do it anyway for the sake of my wife. It took determination. I had no arousal ... at first. But the more I got her aroused, the more I got aroused. I still had to force myself every time, but I always found it satisfying by the end.

I've learned that sex without erections, while different, is not at all unsatisfying. I think there's actually a lot more possible variety without penetration than with it. Be inventive. You're actually doing a whole lot better than most men - who give up without really trying.

Alan

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I'm 6 months post 18 months Lupron/Casodex, still no interest in sex.

Bob, age 77

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Thanks Bob

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My oncologist took me off Lupron for several months and I did notice some increase in libido after several months. She put me back on the Lupron last Fall; so I'm back to no real sexual interest and can't say if the increase in libido would have continued.

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Hi may I ask how old are you and would you have self described yourself as very sexually active pre-pc?

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I am 66. I would say I was moderately sexually active pre-pc. I did ramp things up in the months between diagnosis and surgery. And I was quite sexually active post surgery and before my first Lupron treatments. I had a fairly strong libido post-surgery and before Lupron.

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I was on Lupron for 2 yrs but took myself off at 18 mos. After 6 mos. testosterone returned but libido didn't follow suit. Also had problems with venous leakage due to ED during time on Lupron. After an additional 4 mos. testosterone increased to normal for age grp. & the other two problems are improving. Only problem is that PSA is also rising. Thank god I have a patient partner. Good luck.

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Thanks for sharing Sem

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I recovered T and some libido after a 6 month ADT shot wore off. I would suggest the poor man's viagra: L-Arginine. Throw in some L-acetyl Carnitine. Make sure you are properly hydrated. Be patient. Good luck.

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Thanks WSOP,

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SEX, what's that?

Good luck, Good Health and Good Humor.

j-o-h-n Thursday 06/13/2019 5:43 PM DST

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Lmao

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HiddenThis reply has been deleted

Hey Pony, thanks so much for sharing your experience. Lots of good tips and feedback. I wish you a speedy recovery. Would you like to stay connected as a lot of our experiences are very similar. May I ask how old are you?

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I turned 59 two weeks ago. It looks like we were diagnosed at the same time. I have always had a strong sex drive which probably figures into the equation. I PM'd my contact info.

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Now let see... "My muscles are disappearing, I’ve gained belly fat, lost significant chest and stomach hair and my testicles have shrunken slightly. I’m really embarrassed and self-conscious about the changes to my body".

Sounds familiar... Most of us have gone through the routine.. Yep before Pca we all thought with the little head. Eventually getting hard would be impossible anyway as we aged, except for using Viagra/Cialis. So Pca and your meds just hastened the process. Talk openly to your husband and what would you (and he) think if the shoe were on the other foot?

Chill out and remember if you want to be around with your husband take it as it comes one day at a time. I hate the same shit that you're going through right now but I use a technical term "fcuk it" and find solace in humor..... Enjoy life and -

Good luck, Good Health and Good Humor.

j-o-h-n Friday 06/14/2019 5:45 PM DST

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I cannot give direct experience because I have avoided ADT in spite of its being strongly pushed in the beginning by the RO and the MO. One of the men in my support group, however, was on ADT for six months prior to surgery and was supposed to continue it after surgery. He declined and told his Dana Farber MO that he could not tolerate the side effects. He is doing well, libido has come back, he is orgastic and getting married in August. So there are happy outcomes. I was struck also by the notation by one guy below that his partner's pleasure also stimulates him. That is certainly true for me and my partner. It has not given me an erection but it has boosted my libido. Maybe my frustration, too. I could not tolerate Tri-Mix because of the pain in my perineum. The patient information said "ache." Wrong: I felt like I was hatching a coconut out of my "taint"!

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I used trimix a year after surgery. It was no fun at all. I called it the fastest way to kill the buzz that I know of. If "ached" is the word, then it "ached" a hell of lot. It lasted too long, so I cut the dosage in half. It still lasted too long and still "ached". Cut the dosage in half. The same result. Stopped using it. No "ache". I have found other means to achieve an erection. There is definitely a head component to all of this, but also a mechanical component as well since self inflation does not seem to be in the offing. I have to be standing up to use gravity assist to shake the blood into my prick. This also involves the head which trimix never does. It is much like the results from using a pump but without all the equipment to make it happen. I have not found out yet whether it is hard enough for penetration and will have to buy a cock ring to keep the blood from leaking out. It is certainly hard enough for an orgasm.

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totally my experience. Urologist was dismissive. Try Bi-Mix. It did not do much of anything. I get it: I value my erection more than my urologist values my erection. My job to rehabilitate. I am using a pump several times a week (supposed to be 10 minutes daily) and taking 60 mgm sildenafil on Tu, Thu and Sat. The rehab program also promotes masturbation and nothing wrong with than.

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I had 1 six month dose of Eligard (Lupron) the oncologist overseeing the PA who handled my case informed me that I was never coming off ADT therapy..... I was miserable while on it.... I stopped treatment 3 months after.... That was in March of this year.... It's taken awhile to get back to that place where I get aroused by just thinking of my wife...I'm not sure if anyone can say how long it takes.... Pretty much based on the individual.... And I am certainly 'NOT' advocating that you or anyone stop treatments... But I can attest to the fact that I did recover my desire and ability once the Eligard wore off...

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