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Time to Decide - ED & Loss of Libido

User
Posted 27 Nov 2020 at 14:34

Hi Everyone.  Thanks for sharing your experiences.  As a bisexual man (versatile) I would very much welcome posts on a couple of issues I am weighing up before deciding on which treatment pathway to take.

I have been offered Surgery (Open RP non-nerve sparing) (vital stats: G7(4+3) / T3b / PSA 25) or Hormone Therapy (18 months, effectively 2 years) with Radiotherapy (20 sessions).  I already have some ED and currently use Sildenafil for events, though this is not always needed.  Whether non-nerve sparing surgery or RT there seems at least an 85% chance of ED with no chance of getting a natural erection.  I am looking forward to doing the daily penile exercises though, sometimes with help from others!

With hormone therapy there is the risk of loss or reduced libido and even if I'm physically able to have an erection I am not sure whether the loss of, or reduced, libido will affect that.  Not ever having had a loss of libido I am unsure of its impact, other than it is said one's desire for sex is lost completely (or reduced) - not at all something I would want!  Are there ways of addressing this in order to maintain sexual activity (and desire), such as a commitment to go through the mechanics of getting an erection (pump and tablets) in the same way one would commit to doing a 5k walk for exercise?  Others' experience of addressing this would be helpful.

In terms of anal intercourse (if top) it seems I would be reliant upon upon getting an erection hard enough, which may only be achieved with use of pump and/or tablets (if RT) or injections (if RP).  I am assuming there will be sensations as a result of anal intercourse, but that they will just be different (dry orgasm; hopefully not stinging!).

In terms of anal intercourse (if bottom) I am assuming here too the sensation will just be different but pleasurable nonetheless (with no prostate (if RP) or reduced if prostate is affected by RT).

Others' experiences would be helpful in deciding which route to take .... I think!

John

User
Posted 27 Nov 2020 at 18:52
If you lose your libido (which is very common with HT) you won't miss it. If you have a partner, they'll be the one who misses it, but not you. Sex will simply no longer feature in your "things I feel like doing today" list. It sounds odd, but to the person on HT it really is a complete "non-problem"!

Best wishes,

Chris

User
Posted 27 Nov 2020 at 18:46

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

User
Posted 27 Nov 2020 at 19:47
I had supposedly part nerve-sparing surgery two years ago, which coincided with two inches going missing off my dick.

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.

User
Posted 27 Nov 2020 at 20:20
Regular penile rehab during the HT time and afterwards will mitigate some of the future problems, especially atrophy, but there isn’t anything to be done to prevent late onset ED as a result of radiation damage to the nerve bundles.

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.

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

User
Posted 27 Nov 2020 at 20:26

Originally Posted by: Online Community Member
You refer to a 1 in 3 chance of getting late onset ED due to "fibrosis of the fine blood vessels supplying the penis".If I have understood things correctly, Is this avoided by ensuring good penile rehab with daily erections and a good penile exercise programme?

No, sadly not. I don't think this is avoidable by any action you can take - it's just a chance you have to take if you go this route. It's not blood vessels in the penis (which should be out of the radiation field), but further back in the body where they pass up near the prostate and Retzius space, I think. The radiation and healing cycles cause fibrosis of many tissues. The effect on small blood vessels is to make them more fragile, and they can break sometime later (a late onset effect). This is also the cause of late onset rectal bleeding.

The damage caused by not having regular erections is different. The two erectile parts of the penis, the corpus cavernosum, are sponge like structures that are expanded by filling with blood. In the absence of doing this regularly, the sponge structure starts to suffer from fibrosis, and this prevents it expanding as well as it did, resulting in loss of length and girth. A large reduction in girth can cause a loss of rigidity too, due to the way the erect penis works.

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User
Posted 27 Nov 2020 at 18:46

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

User
Posted 27 Nov 2020 at 18:52
If you lose your libido (which is very common with HT) you won't miss it. If you have a partner, they'll be the one who misses it, but not you. Sex will simply no longer feature in your "things I feel like doing today" list. It sounds odd, but to the person on HT it really is a complete "non-problem"!

Best wishes,

Chris

User
Posted 27 Nov 2020 at 19:47
I had supposedly part nerve-sparing surgery two years ago, which coincided with two inches going missing off my dick.

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.

User
Posted 27 Nov 2020 at 19:50
Thanks Andy, very helpful feedback. Your description of loss of libido is the first I've seen, though the need to provide additional stimulation is something I've read elsewhere. Looks as if I'll need to develop some strategies for increasing stimulation, including getting some help from a partner, and ensuring I have erections for good penis health.

I think the ED rates I quoted for EBRT must refer to temporary risk, as you suggest.

You refer to a 1 in 3 chance of getting late onset ED due to "fibrosis of the fine blood vessels supplying the penis". If I have understood things correctly, Is this avoided by ensuring good penile rehab with daily erections and a good penile exercise programme?

Thanks also Chris, never thought of it as a non-problem!

John.

User
Posted 27 Nov 2020 at 20:20
Regular penile rehab during the HT time and afterwards will mitigate some of the future problems, especially atrophy, but there isn’t anything to be done to prevent late onset ED as a result of radiation damage to the nerve bundles.

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.

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

User
Posted 27 Nov 2020 at 20:26

Originally Posted by: Online Community Member
You refer to a 1 in 3 chance of getting late onset ED due to "fibrosis of the fine blood vessels supplying the penis".If I have understood things correctly, Is this avoided by ensuring good penile rehab with daily erections and a good penile exercise programme?

No, sadly not. I don't think this is avoidable by any action you can take - it's just a chance you have to take if you go this route. It's not blood vessels in the penis (which should be out of the radiation field), but further back in the body where they pass up near the prostate and Retzius space, I think. The radiation and healing cycles cause fibrosis of many tissues. The effect on small blood vessels is to make them more fragile, and they can break sometime later (a late onset effect). This is also the cause of late onset rectal bleeding.

The damage caused by not having regular erections is different. The two erectile parts of the penis, the corpus cavernosum, are sponge like structures that are expanded by filling with blood. In the absence of doing this regularly, the sponge structure starts to suffer from fibrosis, and this prevents it expanding as well as it did, resulting in loss of length and girth. A large reduction in girth can cause a loss of rigidity too, due to the way the erect penis works.

User
Posted 28 Nov 2020 at 12:29

Thanks to Chris who sent a private message and link. Much appreciated and most useful. As newbie, don't yet have permission to send emails. John.

Edited by member 28 Nov 2020 at 12:30  | Reason: Not specified

User
Posted 13 Jun 2021 at 14:03

Hi John

I have followed this thread and hope you are finding a way forward. I want to share a bit of data about my anal pleasure experience after cancer treatment:

After radical prostatectomy surgery I find the same general pleasure in receiving anal penetration as before, even though I really miss the direct prostate pleasure which is gone forever. All the other nerves are still there and anal penetration feels very good. It took about 3 months after surgery to feel safe to be penetrated - whereas by comparison I could have penile orgasms within the first month.

I am also maintaining a regular penile rehab programme and at 15 months post surgery there are signs of life in my erections. I get rock hard nocturnal erections regularly, and firm enough for a lot of fun during the day. Sometimes I am able to get rock hard during sex and trusting it will get better with time. My taint (perineum) has been the slowest to recover, still feels a bit bruised and tender, and not as pleasurable when there was a prostate under the surface, but massage and touch beginning to feel good again.

Just so you know where I am coming from, I am bisexual but in a monogamous heterosexual relationship so my actual anal sexual experience since surgery is limited to toys, masturbation and pegging.

 
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