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Nerves 'Spared' - But Still Only 50% Chance of Erectile Function

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User
Posted 21 Jan 2023 at 20:55

Hi All,

It's 6 months since my Prostatectomy.  Before the surgery, I had explained to the medics that my sex life was VERY important to me and that I was looking for 'nerve-sparing' surgery.  I was assured that they would try to do so, depending on the severity of disease that they found.  (Pre-op, I was diagnosed as T2, but after op., this was upgraded to T3a).

Immediately after the surgery, I was informed that "most" of my nerves on both sides of the prostate had been 'spared'.  Happy days, or so I thought.

However, at my last review, the urologist told me that I still only had a 50-60% chance of erectile functioning.  (At present, it's still zero).  This was never mentioned pre-surgery, and I was ignorant of the fact that 'nerve-sparing' doesn't mean that the nerves actually work!  I have since read (on this site, I believe) that, although the nerves may be 'spared', they may be so damaged that they may never actually recover.  

I'm feeling disillusioned.  Am I wrong in thinking that this should have all been spelt out to me before the surgery?

I realise that the intervention has saved my life, and I am very grateful for that.  I know that 'something' needed to be done, given my biopsy results.  I realise that "what if" isn't really helpful now, but I wonder if radiation would have been a better option for me.  My thinking is that, as I'm aged 66 now, I might have had another 2 or 3 years of a sex life before it all tapered off slowly (as I understand it?).  I understand that the hormone therapy (which goes with the radiation) might have killed my libido anyway, but with the surgery, my sex life has come to an abrupt halt and may never recover.

(By the way, I am using a vacuum pump, Tadalafil and Alprostadil, with very modest results).

Any thoughts would be very welcome.

Thanks.

JedSee.

 

 

User
Posted 16 Jun 2023 at 19:13

Nerve sparing promise!

You and many others may regret having had RP because of incontinence and ED. The choice of treatment is probably the most difficult decision any man may have to make. Of course if the cancer has spread beyond the gland then RP is generally not an appropriate option. I had surgery over 12 years ago and suffer from mild incontinence when sexually excited and when I orgasm which is obviously very inconvenient, and ED. Although my cancer was well contained within the gland, with good margins, my urologist was quite honest and told me that my chances of returning to pre-surgery situation were no better than 50%. As far as ED is concerned there is a lot of evidence that even if nerves are spared most men's erectile function will not return to the per-surgery level. Despite this RP is quite popular because of the psychological benefit of 'getting rid of cancer for ever'!  One of the reasons I chose surgery was that any radiation treatment may leave some cancer cells untreated (although modern targeted approach makes this less likely). Many men have enlarged prostates, as I had, and therefore removing it solves the problem of difficulty with urination. Also if the surgery is not successful the other treatments are backups.

I often point out to recovering men that whatever treatment you choose you don't have to give up sex. There are many options to deal with incontinence and ED, should you be unlucky. Because of my age my erections were very weak pre-surgery and because I did not wish to use any drugs or invasive treatments like injections or further surgery I opted for RP. Because my wife and I were determined to re-establish our sex life we did find a solution that suits us and has had many unintended benefits. You sound rather defeated. I assure you if you and your wife have libidos you can continue to enjoy sex for many years. Let your imagination and sense of humour guide you as ours has. If you are interested you can read my posts at:

https://community.prostatecanceruk.org/posts/t28948-Re-establishing-Sex-Life

 

Edited by member 17 Jun 2023 at 11:12  | Reason: Not specified

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 21 Jan 2023 at 20:55

Hi All,

It's 6 months since my Prostatectomy.  Before the surgery, I had explained to the medics that my sex life was VERY important to me and that I was looking for 'nerve-sparing' surgery.  I was assured that they would try to do so, depending on the severity of disease that they found.  (Pre-op, I was diagnosed as T2, but after op., this was upgraded to T3a).

Immediately after the surgery, I was informed that "most" of my nerves on both sides of the prostate had been 'spared'.  Happy days, or so I thought.

However, at my last review, the urologist told me that I still only had a 50-60% chance of erectile functioning.  (At present, it's still zero).  This was never mentioned pre-surgery, and I was ignorant of the fact that 'nerve-sparing' doesn't mean that the nerves actually work!  I have since read (on this site, I believe) that, although the nerves may be 'spared', they may be so damaged that they may never actually recover.  

I'm feeling disillusioned.  Am I wrong in thinking that this should have all been spelt out to me before the surgery?

I realise that the intervention has saved my life, and I am very grateful for that.  I know that 'something' needed to be done, given my biopsy results.  I realise that "what if" isn't really helpful now, but I wonder if radiation would have been a better option for me.  My thinking is that, as I'm aged 66 now, I might have had another 2 or 3 years of a sex life before it all tapered off slowly (as I understand it?).  I understand that the hormone therapy (which goes with the radiation) might have killed my libido anyway, but with the surgery, my sex life has come to an abrupt halt and may never recover.

(By the way, I am using a vacuum pump, Tadalafil and Alprostadil, with very modest results).

Any thoughts would be very welcome.

Thanks.

JedSee.

 

 

User
Posted 22 Jan 2023 at 00:20
Yes, I think some surgeons underplay the reality when recommending surgery to their patients; particularly the ones with big egos. We were lucky - my dad had already had the op and was using a pump and injections despite it being nerve-sparing so we knew that was a possibility.

If we hadn't already known, we would have been aware before he went in for the op as our hospital was super at giving out information - they had hard copies of the PCUK toolkit which were handed to newly diagnosed men at clinic and the info sheets in the toolkit spelled out the risk of ED. Sadly, not all hospitals give out that information.

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

User
Posted 22 Jan 2023 at 17:31

I also got the same impression pre-surgery. I was told with nerve sparring, I  would regain erectile functions, only dry ejaculation. However, 7mths on nothing, would I still have gone for the surgery knowing what I know now? I probably would have delayed it (as I was told it was slow growing anyway), here we are now, just have to look forward. 

User
Posted 22 Jan 2023 at 18:02

I was warned that the nerves on one side would definitely go and I'd need tablets.

As to whether RT would have been different it's always hard to say.  They wouldn't know it was a T3 and may have undertreated you, and perhaps given you less time on hormones than optimum.  RT can have longer term effects with ED.

It's a good thing to air your thoughts.  It's good that you appreciate the treatment.  You can tear yourself up thinking what if.  I've wondered if RT would have been better but I know having the op urgently was my main life objective at the time. They could have cut off whatever they wanted.  It's good to get the beast out and hope for the best. 

Hope your bits show some life soon.

Edited by member 22 Jan 2023 at 18:29  | Reason: Not specified

User
Posted 22 Jan 2023 at 18:17

Jedsee, I was supposedly non nerve sparring, I say supposedly because I was told the nerves could not be spared.

I did get some stirrings not long after surgery and at one point probably managed a 70 percent swelling. As it was pointed out to me if there were no nerves there would be no erections , my surgeon gave some reasons for the partial recovery.

Never give up and have fun trying to find a solution to the ED . Your sex life can carry on after surgery and in my case can sometimes be better than before surgery and salvage RT.

Thanks Chris 

 

User
Posted 22 Jan 2023 at 20:02

Full nerve sparring but 4.5 months after op still have ED. Sex life continues though, you just have to find different ways to have fun...

User
Posted 01 Feb 2023 at 14:00

My story similar to yours, also diagnosed with T1 and upgraded to T3 on the basis of surgery results. My op was partially nerve sparing and I was also shocked by how much the nerves were damaged. In my case it got progressively worse for the first 3 months post surgery. By one year there were some signs of hope but I was pretty gutted when I got to 2 years (often quoted as the outer limit) with only partial, rather limp and unreliable recovery. 

The good news I want to share is that during Year 3 my erectile function has improved a lot!

User
Posted 01 Feb 2023 at 19:51

Thanks Mish, that's good to know.  Where there's life, there's hope! 😀.

Best wishes, JedSee.

User
Posted 16 Jun 2023 at 14:40

I had RP at the age of 46. I was told one side of the nerves had been spared. That was 12 years ago and I have not had a useable erection since.

If I had known this then I would have not had the operation and would have taken my chances. Younger men in 40/50's need to be given clearer advice as to what will happen. I feel cheated out of some of my best years.

User
Posted 16 Jun 2023 at 16:43

Originally Posted by: Online Community Member

I had RP at the age of 46. I was told one side of the nerves had been spared. That was 12 years ago and I have not had a useable erection since.

If I had known this then I would have not had the operation and would have taken my chances. Younger men in 40/50's need to be given clearer advice as to what will happen. I feel cheated out of some of my best years.

I was 10yrs older than you when I had my surgery, I was told I would get nerve sparring on both sides. I never envisaged any issues with ED after the surgery. I was also told, I initially would require medications in the meantime. However, to my shock the meds does nothing, absolutely nothing! I am however grateful erection or not, I can look forward to the future.

User
Posted 16 Jun 2023 at 17:50

Jedsee

I’m 6 months post-RARP and have been prescribed 100mg Sildenafil per month. There have been some stirrings which I’m taking as being good news.

I also have a vacuum pump which I’m having good results with: a very useable erection allowing my wife and myself to have enjoyable intercourse. As others have said, there are other ways of having mutual pleasure - it’s a case of finding what works for you.

Yes, the ED isn’t a side effect we would choose but there are other ways of having an enjoyable sex life.

 

 

 

Edited by member 16 Jun 2023 at 17:51  | Reason: .

User
Posted 16 Jun 2023 at 21:52
I suppose this is a bit of a sensitive subject but for those men who are suffering from ED, are you still experiencing an enjoyable orgasm?

I am now 5 weeks post RARP and nothing is happening yet erection wise (obviously) but I am enjoying some of the best orgasms that I have had for a long long time - well at least since I turned 40 LOL

I'm just wondering if I am unusual in this regard?

User
Posted 18 Jun 2023 at 00:17

I think that for men like Pratap and his wife, with determination, imagination and partnership working it is possible to have a joyful sex life with ED. But that isn't true for everyone. Over the years, I have seen many men on here who were given no advice or support by their medics, I have seen men whose partners completely disengaged or even left them for another man, and I have seen men who may physically recover erections but are so damaged by their diagnosis and the subsequent side effects that they have no emotional strength to try to overcome the ED. For someone like Franklymrshankly, 12 years of no erections has almost certainly led to serious atrophy, which is irreversible. That can lead to further emotional distress, making it less likely that he will feel sexy or want to try alternatives - it is a vicious circle.

Edited by member 18 Jun 2023 at 00:17  | Reason: Not specified

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

Show Most Thanked Posts
User
Posted 22 Jan 2023 at 00:20
Yes, I think some surgeons underplay the reality when recommending surgery to their patients; particularly the ones with big egos. We were lucky - my dad had already had the op and was using a pump and injections despite it being nerve-sparing so we knew that was a possibility.

If we hadn't already known, we would have been aware before he went in for the op as our hospital was super at giving out information - they had hard copies of the PCUK toolkit which were handed to newly diagnosed men at clinic and the info sheets in the toolkit spelled out the risk of ED. Sadly, not all hospitals give out that information.

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

User
Posted 22 Jan 2023 at 17:31

I also got the same impression pre-surgery. I was told with nerve sparring, I  would regain erectile functions, only dry ejaculation. However, 7mths on nothing, would I still have gone for the surgery knowing what I know now? I probably would have delayed it (as I was told it was slow growing anyway), here we are now, just have to look forward. 

User
Posted 22 Jan 2023 at 18:02

I was warned that the nerves on one side would definitely go and I'd need tablets.

As to whether RT would have been different it's always hard to say.  They wouldn't know it was a T3 and may have undertreated you, and perhaps given you less time on hormones than optimum.  RT can have longer term effects with ED.

It's a good thing to air your thoughts.  It's good that you appreciate the treatment.  You can tear yourself up thinking what if.  I've wondered if RT would have been better but I know having the op urgently was my main life objective at the time. They could have cut off whatever they wanted.  It's good to get the beast out and hope for the best. 

Hope your bits show some life soon.

Edited by member 22 Jan 2023 at 18:29  | Reason: Not specified

User
Posted 22 Jan 2023 at 18:17

Jedsee, I was supposedly non nerve sparring, I say supposedly because I was told the nerves could not be spared.

I did get some stirrings not long after surgery and at one point probably managed a 70 percent swelling. As it was pointed out to me if there were no nerves there would be no erections , my surgeon gave some reasons for the partial recovery.

Never give up and have fun trying to find a solution to the ED . Your sex life can carry on after surgery and in my case can sometimes be better than before surgery and salvage RT.

Thanks Chris 

 

User
Posted 22 Jan 2023 at 19:25

Thank you to all who have replied and for the words of encouragement.  You're the best, and make this site the great resource that it is.

Hopefully, I'll have some improvement as the months go by.  

Good health to all of you.

 

JedSee.

 

User
Posted 22 Jan 2023 at 20:02

Full nerve sparring but 4.5 months after op still have ED. Sex life continues though, you just have to find different ways to have fun...

User
Posted 01 Feb 2023 at 14:00

My story similar to yours, also diagnosed with T1 and upgraded to T3 on the basis of surgery results. My op was partially nerve sparing and I was also shocked by how much the nerves were damaged. In my case it got progressively worse for the first 3 months post surgery. By one year there were some signs of hope but I was pretty gutted when I got to 2 years (often quoted as the outer limit) with only partial, rather limp and unreliable recovery. 

The good news I want to share is that during Year 3 my erectile function has improved a lot!

User
Posted 01 Feb 2023 at 19:51

Thanks Mish, that's good to know.  Where there's life, there's hope! 😀.

Best wishes, JedSee.

User
Posted 16 Jun 2023 at 14:40

I had RP at the age of 46. I was told one side of the nerves had been spared. That was 12 years ago and I have not had a useable erection since.

If I had known this then I would have not had the operation and would have taken my chances. Younger men in 40/50's need to be given clearer advice as to what will happen. I feel cheated out of some of my best years.

User
Posted 16 Jun 2023 at 16:43

Originally Posted by: Online Community Member

I had RP at the age of 46. I was told one side of the nerves had been spared. That was 12 years ago and I have not had a useable erection since.

If I had known this then I would have not had the operation and would have taken my chances. Younger men in 40/50's need to be given clearer advice as to what will happen. I feel cheated out of some of my best years.

I was 10yrs older than you when I had my surgery, I was told I would get nerve sparring on both sides. I never envisaged any issues with ED after the surgery. I was also told, I initially would require medications in the meantime. However, to my shock the meds does nothing, absolutely nothing! I am however grateful erection or not, I can look forward to the future.

User
Posted 16 Jun 2023 at 17:50

Jedsee

I’m 6 months post-RARP and have been prescribed 100mg Sildenafil per month. There have been some stirrings which I’m taking as being good news.

I also have a vacuum pump which I’m having good results with: a very useable erection allowing my wife and myself to have enjoyable intercourse. As others have said, there are other ways of having mutual pleasure - it’s a case of finding what works for you.

Yes, the ED isn’t a side effect we would choose but there are other ways of having an enjoyable sex life.

 

 

 

Edited by member 16 Jun 2023 at 17:51  | Reason: .

User
Posted 16 Jun 2023 at 19:13

Nerve sparing promise!

You and many others may regret having had RP because of incontinence and ED. The choice of treatment is probably the most difficult decision any man may have to make. Of course if the cancer has spread beyond the gland then RP is generally not an appropriate option. I had surgery over 12 years ago and suffer from mild incontinence when sexually excited and when I orgasm which is obviously very inconvenient, and ED. Although my cancer was well contained within the gland, with good margins, my urologist was quite honest and told me that my chances of returning to pre-surgery situation were no better than 50%. As far as ED is concerned there is a lot of evidence that even if nerves are spared most men's erectile function will not return to the per-surgery level. Despite this RP is quite popular because of the psychological benefit of 'getting rid of cancer for ever'!  One of the reasons I chose surgery was that any radiation treatment may leave some cancer cells untreated (although modern targeted approach makes this less likely). Many men have enlarged prostates, as I had, and therefore removing it solves the problem of difficulty with urination. Also if the surgery is not successful the other treatments are backups.

I often point out to recovering men that whatever treatment you choose you don't have to give up sex. There are many options to deal with incontinence and ED, should you be unlucky. Because of my age my erections were very weak pre-surgery and because I did not wish to use any drugs or invasive treatments like injections or further surgery I opted for RP. Because my wife and I were determined to re-establish our sex life we did find a solution that suits us and has had many unintended benefits. You sound rather defeated. I assure you if you and your wife have libidos you can continue to enjoy sex for many years. Let your imagination and sense of humour guide you as ours has. If you are interested you can read my posts at:

https://community.prostatecanceruk.org/posts/t28948-Re-establishing-Sex-Life

 

Edited by member 17 Jun 2023 at 11:12  | Reason: Not specified

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 16 Jun 2023 at 20:27

Hi Franklymrshankly,

Many thanks for your comment, but I'm very sorry to hear of your situation.  At 46, to lose your erections and never recover them was a cruel blow.

I hope that you've found ways around it which offer some pleasure, but it tends to lead to cynicism about doctors assurances.

Look after yourself.

JedSee.

User
Posted 16 Jun 2023 at 21:52
I suppose this is a bit of a sensitive subject but for those men who are suffering from ED, are you still experiencing an enjoyable orgasm?

I am now 5 weeks post RARP and nothing is happening yet erection wise (obviously) but I am enjoying some of the best orgasms that I have had for a long long time - well at least since I turned 40 LOL

I'm just wondering if I am unusual in this regard?

User
Posted 17 Jun 2023 at 15:32

Steve , some guys report post op orgasms as being extremely painful,some guy like me find them to be out of this world, more so when having intercourse than with masturbation. After over nine years of avoiding HT now on Bicalutamide and it feels like that is starting to change.

Never give up and have fun.

Thanks Chris 

User
Posted 18 Jun 2023 at 00:05

John had never had a multiple orgasm until after his RP - now they are a regular thing for him. And yes, much more intense than before.

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

User
Posted 18 Jun 2023 at 00:17

I think that for men like Pratap and his wife, with determination, imagination and partnership working it is possible to have a joyful sex life with ED. But that isn't true for everyone. Over the years, I have seen many men on here who were given no advice or support by their medics, I have seen men whose partners completely disengaged or even left them for another man, and I have seen men who may physically recover erections but are so damaged by their diagnosis and the subsequent side effects that they have no emotional strength to try to overcome the ED. For someone like Franklymrshankly, 12 years of no erections has almost certainly led to serious atrophy, which is irreversible. That can lead to further emotional distress, making it less likely that he will feel sexy or want to try alternatives - it is a vicious circle.

Edited by member 18 Jun 2023 at 00:17  | Reason: Not specified

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

User
Posted 22 Jun 2023 at 08:58

Originally Posted by: Online Community Member
I suppose this is a bit of a sensitive subject but for those men who are suffering from ED, are you still experiencing an enjoyable orgasm?
I am now 5 weeks post RARP and nothing is happening yet erection wise (obviously) but I am enjoying some of the best orgasms that I have had for a long long time - well at least since I turned 40 LOL
I'm just wondering if I am unusual in this regard?

Yes! I find orgasms at least as pleasurable as before my surgery. Overall I think I have more intense and full-body orgasms now than I did before.

User
Posted 22 Jun 2023 at 10:47

Originally Posted by: Online Community Member

I think that for men like Pratap and his wife, with determination, imagination and partnership working it is possible to have a joyful sex life with ED. But that isn't true for everyone. Over the years, I have seen many men on here who were given no advice or support by their medics, I have seen men whose partners completely disengaged or even left them for another man, and I have seen men who may physically recover erections but are so damaged by their diagnosis and the subsequent side effects that they have no emotional strength to try to overcome the ED. For someone like Franklymrshankly, 12 years of no erections has almost certainly led to serious atrophy, which is irreversible. That can lead to further emotional distress, making it less likely that he will feel sexy or want to try alternatives - it is a vicious circle.

Sadly, the after effects of PCa is like a spectrum. From diagnosis to treatment and recovery (or not), there is no 1 size fit. Everyone appears to be on a different journey in terms of outcome and expectation. Even this from a particular individual can be fluid. I feel sad, when I read posts from members who have an advanced from of the condition and all they want is to be alive - Then look at myself and feel ungrateful for moaning about the loss of erections or my nightly incontinence. 

 
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