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E.D. and TRT

User
Posted 13 Jan 2021 at 14:28

I have just had my latest PSA result, <0.1.  So all is well for me at present on that front. I have ED, and the only thing that works ( a bit) is Caverject injections.  I asked my GP about Testosterone replacement and a Testosterone level test showed 8. The GP wouldn't prescribe TRT unless the Urologist said yes. The Urologist said no, as it might revive any remaining cancer cells.  So there it is, lowish testosterone ED and no chance of TRT.


At 77 years old I would be prepared to take the risk at least for a short trial to see what effects TRT would have but the docs won't prescribe it. 


I wonder if anyone has any suggestions, maybe write a letter to the Urologist but I would need some references to research that shows that TRT may not be detrimental in PCa.


John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2


Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23  <0.01

User
Posted 13 Jan 2021 at 22:30

John,


Your testosterone is in the normal range, although towards the lower end (NHS reference range for age ≥ 50, 6.68 - 25.7 nmol/L), so I think it's right you were refused.
Why do you think that's the cause of ED?
Are you low on libido? That would normally result in no interest in sex (and hence not caring about ED), rather than just ED.


I see you had brachytherapy. Your bio doesn't mention hormone therapy though.


Can you say when ED started?
Was this during the brachytherapy, or something ongoing for longer?
Have you tried PDE5 inhibitors (Sildenafil, Tadalafil, etc)?

Edited by member 13 Jan 2021 at 23:15  | Reason: Not specified

User
Posted 14 Jan 2021 at 14:54
Hello Andy, yes I have tried both Tadafil and Sildenafil and they make little difference. Brachytherapy made ED worse, I had it for 5 years or so prior but Tadafil worked quite well, since Brachy ED is a lot worse. I didn't have hormone treatment, the docs decided that my prostate was not too large.

I have libido, but have ( obviously) great difficulty satisfying any sexual urges.

My GP did say that the Testosterone level was "grey area" and here is what I based my judgement on

QUOTE "In the UK, the ranges differ between 8.6 – 29nmol/l (a standard range used by the NHS and most laboratories) to 10nmol/l – 41nmol/l. The BSSM (British Society of Sexual Medicine) recommends that testosterone replacement therapy should be offered to patients with levels below 12nmol/l of
total testosterone or a free testosterone of 0.225nmol/l and below." end quote

https://www.optimale.co.uk

There are different "normal" ranges depending on where you look.

I wasn't refused Testosterone because my level wasn't low enough, but because my Urologist thought it might encourage the return of my PCa. I think my GP was ready to prescribe but of course they have to listen to what the Urologist says.

All I want is a trial of maybe 6 months to see if if testosterone improves my ED.

So what I wanted to do is quote some research paper or whatever to support my case.

John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2


Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23  <0.01

User
Posted 14 Jan 2021 at 15:31

Originally Posted by: Online Community Member
I have libido, but have ( obviously) great difficulty satisfying any sexual urges.


Lack of testosterone tends to cause ED via loss of libido, so the fact you have libido suggests you might have enough testosterone. Testosterone is not needed for erections, just for the desire to have erections (but don't underestimate the effect lack of libido can have on erections). Using Tadalafil as you did before, you could try enhancing your arousal and see if that helps, using same ways that can work with men on hormone therapy, such as sex toys (vibrating rings work for some men), reading erotica or soft porn (but make sure your partner is OK with this, or it could damage your relationship).


You also have ED which is not related to prostate cancer. That can be caused by furring up of arteries feeding the penis (for which PDE5 inhibitors can help providing it's not too bad), or by venous leakage, where the veins are not adequately blocked off by the swelling erectile material, so blood leaks out of the erectile material, or other issues. What you could try in the case of venous leakage is a gentle cock ring, not a pump constriction ring, but something like a Durex Pleasure Ring (although even that is tighter that required), again with Tadalafil. This puts pressure on the veins near the surface which carry the blood out of the erectile material (not the veins you can see, they're a few layers lower down), and might make up for the venous leakage. Relatively little pressure is required, because if it allows buildup of more blood in the erectile material, that usually takes over and blocks off the veins as it normally would. Never use rings for more than 30 minutes, and never allow yourself to fall asleep with them on.


These are some things you can easily try yourself, but you should also get a referral to urology, to have it properly diagnosed. This is because ED is an early symptom of lots of other seemingly unrelated issues, and it can be used to get those fixed before they become serious. A urologist told me just recently, the most common cause of ED they see is diabetes, often undiagnosed at time of presentation, followed by cardiovascular disease. Many men who have heart attacks started getting ED around 3 years before, because the arteries feeding the penis fur up similarly to coronary arteries, but they're smaller so tend to block first. Diagnosing things like that at the time can prevent a heart attack a few years later.

Edited by member 14 Jan 2021 at 15:34  | Reason: Not specified

User
Posted 14 Jan 2021 at 15:43
Opinions appear to be evolving with regards to endogenous and exogenous testosterone (natty versus needle) and prostate cancer.

Some say it is less of a risk but if that was the case why do we undergo ADT? I'd not risk it until exhausting all other routes.

There is also a mental element to ED. I was getting noctural erections but even with viagra, it was hit or miss when trying. A clear indicator it was in my head. You may want to open up a conversation about the non-physical side with your team as they do provide help in the NHS for that.
User
Posted 15 Jan 2021 at 15:05
Thanks for the replies, I have attended the E.D. clinic but I am informed that it closed for the Covid duration.

I have tried various rings and a pump all to no avail. I have T2 diabetes but it is very well controlled, in fact I had an HBa1c last week and the result was "normal range". Furring up of the various blood vessels is very likely, I am old and somewhat overweight.

I have reached the conclusion that I will have to accept that erections are now a thing of the past. I will, however keep on trying, things like vibrating rings and porn are strictly not allowed by SWMBO. I think I might get a vibrating ring anyway and surprise her with it :-)

John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2


Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23  <0.01

User
Posted 15 Jan 2021 at 19:58
Sparrow, before you give up it is worth asking whether you could try Levitra (which in our house work slightly better than Viagra) or single chamber Caverject rathan than dual chamber. It is a bit more of a faff because you have to keep it in the fridge but Dad is on the 100mg dose and it works fine.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 15 Jan 2021 at 20:40

Thanks Lyn, I will see what the doc says re the single chamber Caverject, I hope the supply is better than the dual chamber Caverject, it takes months to come through!


John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2


Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23  <0.01

User
Posted 16 Jul 2022 at 23:26

This throws a whole new light onto the Testosterone Replacement Therapy story.


https://www.youtube.com/watch?v=wafNZV-Hkqk

User
Posted 16 Jul 2022 at 23:42
I haven't had time to watch it all the way through but if you are interested, look at Si_Ness's profile. He persuaded his onco to try testosterone flooding and although it wasn't particularly successful, he was determined to try everything he could think of. His onco is a very special man
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Jul 2022 at 00:11

Thanks Andy. References to other supportive studies in there, though I didn't make a note of them at the time

Edited by member 17 Jul 2022 at 00:16  | Reason: Not specified

User
Posted 17 Jul 2022 at 00:36


I can't work out how to find it, but he's the guy who went for bipolar HT if I recall correctly, although it didn't work out in his case.


Something elser occurred to me...
1) We know men who are obese tend to get higher grade prostate cancer.
2) We know men who are obese tend to have lower testosterone.
Given this talk, it seems to me that 2) may well cause 1).

User
Posted 18 Jul 2022 at 13:36

I have been trying for trt without success, my testosterone is below the reference limit,but I still have libido, recently been to a gp who I haven't seen before and he was sympathetic towards me, I told him of my problems with no test, and he has referred me for a dexa scan, regarding test he said get the scan done first and we will have  a look. 

User
Posted 27 Jul 2022 at 12:05
So why is HT the gold standard?

The argument being put forward here is that HT has no effect and that men either "die when they die regardless of HT intervention" and/or "Low T may make things worse and high T may make things better"?

If so, why do men progress when HT is halted for non PCa reasons (as opposed to PCa becoming hormone independent and HT halted as a result)?
User
Posted 27 Jul 2022 at 12:48

HT does have an effect, but this video suggests the shape of the effect curve is different from the current classical view. I don't think the effect at castrate levels is disputed, just that this might not always be required.


Do bare in mind this is not a widely held view currently.

 
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