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Testosterone testing post radical Prostatectomy

User
Posted 14 Feb 2021 at 11:25

Hi there

I hope everyone is doing OK in this crazy world we live in at the moment - hopefully we are at the 'beginning of the end' of this awful pandemic.

I am 17 months post radical Prostatectomy - dry from day 1 and PSA levels <0.01 so all good (one of the lucky ones). Like many of the members on this forum I am still struggling with ED, although there has been steady progress - I am taking Cialis every other day, Invicorp and on the pump for a bit of physio.

I have certainly suffered from a lack of self-confidence and a loss of sex drive (before the operation 3-4x a week, now an attempt 1-2x a month), which I know is expected. My partner is very understanding and again I am one of the lucky ones - trying to use it than lose it!

Anyway, onto my question(s).... There are quite a few options for Testosterone testing now. I wondered are there any benefits of finding out your Testosterone levels (post radical Prostatectomy), what is a normal level, if it is low is it worth exploring some type of Testosterone replacement, is that dangerous (don't want to fuel any flames and cause myself more cancer issues) or indeed worthwhile, or not?

Sorry a few questions there, please excuse my ignorance, just interested to hear if anyone had investigated and knew the pros and cons.

User
Posted 17 Feb 2021 at 12:12

I had my testosterone tested before and after prostatectomy, and it was little changed. Like you, I am going through that long slow process of recovering erectile and sexual function. It's pretty awful at times.

What has been helping a lot with the sexual energy issues you talk about is an online course by Tess Deveze, an Australian "Intimacy OT" - she is fantastic and she really helps individuals and couples reclaim pleasure after cancer. You can find her on Facebook and also https://www.connectabletherapies.com/  My wife and I are near the end of a six week course entitled "Connection and Cancer" and it is really helpful in broadening the focus from penetrative sex into all over love and intimacy. We though we knew it all but actually we have been deeply moved by the experience.

User
Posted 14 Feb 2021 at 15:42

Having your prostate removed does not affect testosterone levels. If you suspect that you had low testosterone pre-op, there is no harm in having it tested by your GP. If below normal you could ask about TRT but be aware that many doctors are reluctant to prescribe to someone who has previously had PCa (although a man with normal levels wouldn't be put on medication to drop this unless there was evidence of a recurrence)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Feb 2021 at 10:27

I found the Cialis good for rehabilitation but found 50mg viagra far more effective for events. I think once you find what works best for you the drive will come back.  Good luck and glad everything going well on all other fronts

User
Posted 15 Feb 2021 at 15:52

I think you can buy a testosterone test kit at a pharmacy or off the internet, about £30-£40. You take a blood sample and send it off to a lab. Personally I couldn't be bothered with all that messing about, but if I were concerned about testosterone then I think it probably would be worth the money. At least you would then be able to either rule testosterone out, or start investigating TRT. 

Dave

User
Posted 15 Feb 2021 at 16:26
Don't confuse libido with ability to get an erection. If you feel randy but struggle to get it up, that is an ED problem which will hopefully improve with time and the right meds. If you are struggling to feel any desire, that is your libido and there are a number of possible causes - low testosterone is one possibility but so is a) being told you have cancer b) having cancer treatment that causes ED c) worrying that if you try, you will fail (i.e. not being able to trust your body) d) depression or low mood e) not being attracted to the other person f) other factors.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Feb 2021 at 21:25

Originally Posted by: Online Community Member

I think you can buy a testosterone test kit at a pharmacy or off the internet, about £30-£40. You take a blood sample and send it off to a lab. Personally I couldn't be bothered with all that messing about, but if I were concerned about testosterone then I think it probably would be worth the money. At least you would then be able to either rule testosterone out, or start investigating TRT. 

The people who do the PSA tests by post can do a testosterone test the same way. It's not on their website, so you have to call and ask. It costs £17 extra if ordered with a PSA test (£25), but I think you could order it by itself.

https://www.mypsatests.org.uk/

I should be able to say I just did one today, but instead all I can say is I messed one up today. It needs quite a bit of blood (compared with something like a finger prick blood glucose test), and you have to collect it within 5 mins, which I failed to do. I had two kits (one for testosterone and one for PSA, although they're identical), and the second attempt worked fine, so well in fact that I'd filled the phial in 3 mins, and ended up with excess blood all over the floor and chair! So, I've sent the PSA one off, and they're sending me a replacement phial for the testosterone test.

It's probably easier to ask your GP and have a phlebotomist do it properly using a needle in a vein, unless you fancy drawing your own blood or routinely do things like finger-prick blood glucose tests.

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User
Posted 14 Feb 2021 at 15:42

Having your prostate removed does not affect testosterone levels. If you suspect that you had low testosterone pre-op, there is no harm in having it tested by your GP. If below normal you could ask about TRT but be aware that many doctors are reluctant to prescribe to someone who has previously had PCa (although a man with normal levels wouldn't be put on medication to drop this unless there was evidence of a recurrence)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Feb 2021 at 09:38

Thank you for kindly responding - I suppose I am looking for a solution or quick fix to my decrease in sex drive post operation. I should know that ED takes time and you need to be patient plus learn to adapt. Onwards and upwards

User
Posted 15 Feb 2021 at 10:27

I found the Cialis good for rehabilitation but found 50mg viagra far more effective for events. I think once you find what works best for you the drive will come back.  Good luck and glad everything going well on all other fronts

User
Posted 15 Feb 2021 at 15:52

I think you can buy a testosterone test kit at a pharmacy or off the internet, about £30-£40. You take a blood sample and send it off to a lab. Personally I couldn't be bothered with all that messing about, but if I were concerned about testosterone then I think it probably would be worth the money. At least you would then be able to either rule testosterone out, or start investigating TRT. 

Dave

User
Posted 15 Feb 2021 at 16:26
Don't confuse libido with ability to get an erection. If you feel randy but struggle to get it up, that is an ED problem which will hopefully improve with time and the right meds. If you are struggling to feel any desire, that is your libido and there are a number of possible causes - low testosterone is one possibility but so is a) being told you have cancer b) having cancer treatment that causes ED c) worrying that if you try, you will fail (i.e. not being able to trust your body) d) depression or low mood e) not being attracted to the other person f) other factors.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Feb 2021 at 16:35

Very true - I think it is most likely to be option (c) working on it!

User
Posted 15 Feb 2021 at 21:25

Originally Posted by: Online Community Member

I think you can buy a testosterone test kit at a pharmacy or off the internet, about £30-£40. You take a blood sample and send it off to a lab. Personally I couldn't be bothered with all that messing about, but if I were concerned about testosterone then I think it probably would be worth the money. At least you would then be able to either rule testosterone out, or start investigating TRT. 

The people who do the PSA tests by post can do a testosterone test the same way. It's not on their website, so you have to call and ask. It costs £17 extra if ordered with a PSA test (£25), but I think you could order it by itself.

https://www.mypsatests.org.uk/

I should be able to say I just did one today, but instead all I can say is I messed one up today. It needs quite a bit of blood (compared with something like a finger prick blood glucose test), and you have to collect it within 5 mins, which I failed to do. I had two kits (one for testosterone and one for PSA, although they're identical), and the second attempt worked fine, so well in fact that I'd filled the phial in 3 mins, and ended up with excess blood all over the floor and chair! So, I've sent the PSA one off, and they're sending me a replacement phial for the testosterone test.

It's probably easier to ask your GP and have a phlebotomist do it properly using a needle in a vein, unless you fancy drawing your own blood or routinely do things like finger-prick blood glucose tests.

User
Posted 17 Feb 2021 at 12:12

I had my testosterone tested before and after prostatectomy, and it was little changed. Like you, I am going through that long slow process of recovering erectile and sexual function. It's pretty awful at times.

What has been helping a lot with the sexual energy issues you talk about is an online course by Tess Deveze, an Australian "Intimacy OT" - she is fantastic and she really helps individuals and couples reclaim pleasure after cancer. You can find her on Facebook and also https://www.connectabletherapies.com/  My wife and I are near the end of a six week course entitled "Connection and Cancer" and it is really helpful in broadening the focus from penetrative sex into all over love and intimacy. We though we knew it all but actually we have been deeply moved by the experience.

 
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