Time to Decide - ED & Loss of Libido

HI John,

Your ED rates for EBRT seem far too high. Temporary ED from HT might be that high, but will normally reverse when you com off it. EBRT does not normally cause immediate ED. There's something like a 1 in 3 chance of getting late onset ED up to 5 years later, due to fibrosis of the fine blood vessels supplying the penis.

Both your T3 and your PSA ≥20 individually make you high risk, and that reduces the chances of a prostatectomy from working without recurrence, and needing salvage RT. It sounds like you already know it won't be nerve sparing. Given you already had ED, you might consider implants for future erections if you go this way.

For a similar diagnosis, I went for RT in the form of HDR Boost, a combination of EBRT and HDR Brachytherapy, plus 2 years HT, which reports good results for high risk T3, combined with lower level of side effects than some other treatments for high risk cases. So far, sexual function has continued working, although libido is non-existent. I'm 15 months post treatment, and shortly to stop HT, so looking forward to puberty Mark II.

At diagnosis, I filled in a holistic needs analysis form, and identified a significant concern as loss of sexual function. That got me straight into an ED clinic appointment, where it was explained to me what I had to do to preserve sexual function. You might ask if you can get a similar appointment.

Loss of libido - what does that mean? The ED nurse didn't attempt to try and explain (supposing she knew), and said I wouldn't understand it until it happened. She was right. She was going to prescribe 5mg daily Tadalafil too, which will both help with erections, and provide additional protection to the penis when flaccid. However, my GP had already put me on that as soon as he saw I was going on HT. I now talk about loss of libido in presentations, and I think the easiest way to describe it is that sex is no longer the all consuming thing it was. I can do it, but it's a chore, just as appealing as washing the kitchen floor. If you're washing the kitchen floor, you are probably thinking of other more interesting things. Same happens with sex, except when your minds drifts elsewhere, you'll lose your erection. How to counter that? Well, you need much more erotic stimulation to try and make it all consuming again, and to block out any other thoughts. Using porn works for me, but only just. (At my normal libido levels, I don't need porn, even if I'm just having a wank.) It may be that a partner, or sex toys, other strategy works for you - this is going to be quite personal. Many people report that they can't get erections on HT, but I don't know how hard they tried with adopting new strategies, particularly given loss of libido means you'll have little impetus anyway. Porn isn't going to be acceptable in all relationships. Loss is libido doesn't reduce firmness of erection for me (although I have heard some others report that), and I'm sure I would still be fine for anal (although I've remained almost celibate on HT). However, loss of concentration means you are likely to lose it sooner, and that's what's more likely to impact having anal or any type of sex requiring an erection. If I can maintain concentration, I can still keep it for up to an hour, but maintaining concentration that long is rare. Loss of libido also makes it harder to reach orgasm - sometimes I get bored and give up, something which never happened with normal level of libido. So I hope that explains loss of libido - I never found any useful description before it happened to me. My aim is not self pleasure (without libido, it's not as pleasurable), but to get an erection for at least 10 mins a day, and preferably 30, to protect the penis for when I finish HT.

You do need to try to keep having erections, because a period of months without them will damage the penis. If you can't get them naturally or with PDE5 inhibitors (Sildenafil, Tadalafil, etc), then you should be using a pump to do generate daily erections.

I can't comment on being a bottom. One consideration is the risk of radiation proctitis, radiation damage to rectal wall. You might ask if SpaceOAR would be available to you, but if you are non nerve sparing in the case of prostatectomy, then it may be they think is not a good idea for SpaceOAR in the case of RT.

Edited by member 27 Nov 2020 at 22:09  | Reason: Not specified

I have complete erectile dysfunction in what’s left of it, but can achieve a ‘kind of’ dry orgasm, which is about 20% of a proper ejaculatory one. Of course if you lose your prostate your G-spot will be gone as well.

I hope you retain some functionality whatever you choose.

Cheers, John.

Just two thoughts on bottom and top - as a bottom, there may be an impact on your orgasm post-surgery if most of your pleasure comes from prostate stimulation. As Andy says above, radiation damage to the inner surface of the rectum is a potential problem but perhaps just to keep in mind not engaging in too rough activity. As a top, it is likely that anal penetration would be extremely difficult using a vacuum pump and ring because the resulting erection is only firm from the ring outwards; the penis is difficult to point and aim firmly so getting past the point of natural resistance would be a challenge. I suspect radical treatment is an easier choice for bottoms than for tops.

Andy’s description of loss of libido is great but be aware that for some men, it isn’t simply about sex not being on the list of ‘things I want to do today’. For some men, switching off libido makes the thought of any kind of intimacy or sexual contact repulsive - literally skin crawling. Those men will find it impossible to mask that and go through the motions for their partner’s sake plus, us partners can tell :-/ The best description I have ever seen on here was from a man who posted “I looked at my beautiful wife’s behind and realised that I may as well be looking at a lump of concrete.”

Also worth noting that for a small number of men, HT does not affect libido at all.