Lost sex drive and testosterone levels

Hi Vin,

I’m sure some of the guys will come on soon and answer some of your questions.

Are you planning on having only 6 months HT in total or will you have more injections in the future?

My husband had 6 months worth of prostap injections which saw his testosterone fall to <0.4, he had his last injection in Nov 21 (3 monthly injection) his testosterone last week was 10 so it has now increased to within normal range. I can really notice the difference with him too, he had no interest in sex at all but that has now changed….he did have RARP in Dec 21 so the desire is now there but it comes with it’s challenges to realise it!

Wishing you well.

Another bump in the road on my journey that is prostate cancer treatment that I will share.

About 9 months after my radiotherapy finished I started having what can be best described as wet dreams but producing only copious amounts of blood. Back to the oncologist who sent me for another MRI to find out what was going on.

The following week the oncologist gave me the bad news that it appeared that my cancer had spread. Not only did I have to pass the news on to my family but I had to turn down a job offer as I would at best be facing an operation or at worst, facing an uncertain future. The oncologist already had a surgeon lined up.

2 weeks later the same oncologist informed me that at the weekly multi discipline meeting it had been determined that my cancer had not spread after all and the change in MRI images was in fact due to an upgrade to the machine which had resulted in higher definition, revealing previously unseen detail.

Obviously relieved but what a dreadful couple of weeks.

You should try to get erections regularly if possible, as it will help maintain the tissues of the penis. This is called penile rehabilitation or penile physio. About 20% of guys can still get an erection on HT. Erotica or porn might help if you struggle. You could also ask for 20mg Tadalafil from your GP which might help, and also has other health benefits. A pump is another option. Even if you can get an erection and maintain it for a while, you might not be able to reach orgasm with zero libido. That doesn't matter from the penile physio point of view.

Testosterone should come back but it takes a while for the hormone therapy to wear off. It took about 9 months for me after the last injection wore off, and that was after 22 months on injections. It may be a bit faster after a shorter period. When the Testosterone comes back, it does so quite quickly. It can be useful to have Testosterone added to your PSA tests after you finish the hormone therapy, as it's useful to know what's happening, and it help make more sense of the PSA value which if you still have a prostate is expected to rise when Testosterone recovers.

Edited by member 01 Nov 2022 at 21:45  | Reason: Not specified

Hi Vin59, I had similar treatment to you. Everyone is different, but regarding ADT, I started treatment in Oct 2019, my testosterone level was still below average 2 years later,  and at the last check up was only just at the bottom end of normal 30 months later. Great shout regarding tadalafil, definitely helped me. Good news is that everything seems to be working ok now.

Early days for you yet, but ADT is definitely no bunch of roses. 

Regards,

Will.

Hello everyone, this is my first post.

I was diagnosed T3b PSA 70 Gleason 9 (5+4) in 2011 aged 49. 

My treatment was 3 years ADT and radiotherapy, 70Gy to prostate, seminal vesicles and nodes. My oncologist told me that this was the tried and tested method but it would render me impotent.

I started with a month of Casodex tablets followed by Zoladex injections every 3 months for 3 years. The impotence set in quite quickly as my T levels plummeted. Hot flushes? Yep, sweat would pump out of me. Man boobs as well, but at least they gave me something to play with eh? There was a change in my emotional state, I would become upset over things that previously wouldn't have affected me. But the most frightening change was that I began to feel suicidal. This meant that I made sure that I never found myself alone in the house. I would tag along with my wife even if she was going somewhere or to do something that I hated. Anything rather than be left alone at home.

Fast forward to 2018 and my suicidal thoughts were under control and my problems were more confined to the physical. No erections for years had meant that although circumcised, what foreskin that remained was fused to my glans and had to be released under general anesthetic. 

Sexual function began to slowly return as my T levels slowly rose. By 2020 the level was around 10. I started to use Tadalafil to help things along and can now get erections. I have suffered some shortening but would still fall within the "average " range and my testicles have shrunk a great deal. But the upside is that orgasms are more intense now than ever although dry. Sometimes I miss the ejaculation experience though. Also a durex cock ring helps to restore the missing length by stopping the blood flowing out.

Nobody from the health service advised me about the need for penile exercise during my treatment or prescribed any ED drugs. It was as though impotence was a cost of treatment and it was a price to be paid for a cure. That p***** me off.

But 7 or 8 years after my hormone treatment ended I still feel the effects. I still can get emotional and suicidal thoughts are never far away.

My PSA is 0.27 and my T is around 15 now. The rise in T levels have meant almost a second puberty and I have the sexual desire of a teenager although my body's response needs help. But as a one of life's cruel jokes, my wife and I are in our 60s and shall we say our desires are somewhat out of synch. If this carries on, my right arm will have muscles like Popeye.

Everyone's journey is different. Good luck.