Recovery of testosterone and side effects after stopping ORGOVYX

There’s no way to tell how quickly your Testosterone is going to return. I was on Lupron for six years and Orgovyx for 7 months when my oncologist and I both figured my testosterone would never come back. In seven months, it hit 50 and was going up 25% a month, I had to go back on ADT. I never had a problem with diarrhea after stopping Orgovyx, have not heard from others that it is a problem . Because you were on Orgovyx so long, yours may come back quicker, But there’s no one that could tell you how quickly it will come back after being on it for so long. In some cases, people‘s testosterone does not come back at all.

Orgovyx has been available in the United States since 2021, Are you sure you’ve been on at 5 to 6 years?

I would guess your PSA has been below .1 for years. That is really the important number since you were stage four to start.

Hopefully your testosterone continues to rise and you come back to normal numbers within a year or two.

I’ve been on ADT for eight years and I’ve been able to build muscle with testosterone below five. Going to the gym regularly makes a big difference.

You are right. I started orgovyx in 2021. I was just estimating the years. PSA has been 0.02 and testosterone < 3 for years. Also i do work out regularly 5 days a week . I used to lift but now i have been doing cardio only. Alternate between treadmill and elliptical. Oh by the way, I’m an old dude, 75 yo. The biggest battle I’ve had was losing weight while on ADT. Finally managed to lose 45lbs this year. I have 20 more to go. I found it extremely difficult to lose weight. I just became a fat producing machine even with working out. Question: if testosterone rises is it an automatic that I’ll have to go on Orgovyx again? Thanks so much for your response.

@mikejf
Congratulations on losing so much weight. After eight years on ADT I never have gained weight. Gained 4.5 pounds last year thanksgiving and Christmas, took 3 months to lose that little.

Weight exercises are extremely important. ADT destroys your muscles Can you get off the floor without assistance? I had to go to the gym three days a week for four months in order to get my strength back so I can get off the floor.

Check out videos on YouTube about exercise with Robert Newton, he’s worked heavily with prostate cancer patients.

Here’s one of his videos
https://us02web.zoom.us/j/86381149637
I’m 78 and run 1 mile twice a day every day. Go to the gym three days a week to use weights.

You mentioned that “Recent PET scans (2025) show no active cancer anywhere.”
> Was that a PSMA PET scan?
> Were you still on Orgovyx when you had that PET scan? If not, how long had you been off Orgovyx?
> What were your PSA and testosterone levels at the time of that PET scan?

After stopping ADT, I had no adverse side-effects.

The results of the HERO study (https://www.sciencedirect.com/science/article/pii/S2588931123002900) discuss testosterone suppression and testosterone recovery for Orgovyx (Relugolix).

Not sure. It’s labeled NA PET CA Prostate Cancer Imaging. Yes i was still on Orgovyx when I had the scan. PSA 0.02 Testosterone 0.03. Testing was basically to see efficacy of need to continue ADT treatment. thanks

Actually that was < 3 for testosterone

I was on Orgovyx for 6 months. Following my last RT session, testosterone was 11.37. A year later, T was 383.46. When tested this past October, it had risen to 470.9. The docs were happy with the steady increase.

Diarrhea was never an issue after discontinuing Orgovyx. However, I lost my libido and can’t remember the last time I had an erection.

I return every 6 months to get my PSA and T tested. I have received “undetectable” PSA for 20 months. I like that trend.

@tommylee3
Did you have a prostatectomy or radiation?

Usually people that get radiation can get an erection after their testosterone comes back.

After a couple of years, there’s a problem with getting an erection for some people following radiation.

Not being able to get an erection after surgery is not unusual, but there are workarounds.

I’m just surprised you didn’t get back your Libido.

@jeffmarc hi - thanks for your questions. Unfortunately, I got the “double dip” —first a radical prostatectomy. A year later, biochemical recurrence. Radiation therapy with the Orgovyx.

I had no problem getting an erection following RP. But the ADT and radiation ended any hope for an erection.

@tommylee3
Have you tried Trimix. You inject it into your penis and it gives you a very good erection.

A lot of people in this forum have used it. Most are really pleased with the results.

If you go to the top level of the prostate cancer group and do a search for Trimix you will find lots of people’s statements about it.

If it has been years since you’ve had an erection, it may not work. The tissue tends to deteriorate.