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Rejection is hard

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User
Posted 26 Jun 2022 at 17:57

Hi everyone,

My husband Ian finished his HT end of January (last injection was end of October), and he has started to feel better, not so many hot flushes, etc. On some days the effects are still there- him feeling awful, very tired, etc. I've been very supportive though out all this time (over 2 years now), but things are still quite hard sometimes. Luckily his PSA has been undetected since he stopped the radiation sessions last year early March. He had a testosterone test done end of March and it was 1.9ml, not great, but not very low either. Andrew G. has mentioned that it takes a while for the T to increase, I accept that. During his course of HT, there was no sexual activity, which I accepted due to his lack of libido. He was very diligent with the pump, though, which couldn't have been easy for him at times. Since he's been off the HT, he has used the Viteros cream, and while it doesn't give him a great erection, it let's us experiment a bit. This has happened twice. However, recently he told me that I was putting too much pressure on him to try sex, so we have taken that off the menu for now. I  really do feel bad for pressurising him, I wish I didn't have much of a sex drive! I masturbate regularly, but it's not the same without your partner. Since he hardly has any libido yet, he is not in the mood for pleasuring me either. The rejection really hurts. In July, Ian is going to see his urologist nurse about trying the injections again. He only tried them once (Caverjet), but this was just after he started the HT, so there was no point in continuing with that. Caverjet was painful, so I was wondering if he should ask for Invicorp, since it's meant to be painless. This cancer business is a real struggle, and I wonder how much longer it will go on for! Maybe you guys will think I'm a selfish person, and maybe you're right. Any suggestions would be welcome. Luckily, hubby and I have a good life otherwise; we travel a lot, have a lot in common, and we practice other physical intimacy like slow dancing, cuddling and giving each other massages, so not all is bad! I need to just see the positives, but rejection is though!

User
Posted 26 Jun 2022 at 21:39
I don’t think you are being selfish at all. You’re only human and yes it’s hard to repress urges. As above it varies in each man’s case and what they were like pre-treatment. And then how they are affected post treatment.

I was simply terrified pre surgery to the extent of nearly not having it. It left me utterly impotent but I started on recovery asap. No loss of libido and was terrified I wouldn’t be able to please my wife. So we found every way possible and I guess 2 1/2 yrs later I was as near as I was going to get to being back to normal. Couldn’t get enough to be honest , caused problems. Then the dreaded recurrence and having to start HT for the rest of my life. I’m 18 months in. Yes loss of libido undoubtedly , but still can have an erection even now I guess due to 7 yrs of my pump use and semi-regular Tadalafil. Orgasm can be tricky for me but I’m still utterly happy to pleasure my wife whenever however. I’m happy to forgo and please her. That gives me enough pleasure.

Some men suffer in silence about anything rather than talk about things. I believe the psychological damage of cancer and impotence can be crippling to some men , and a challenge to others.

In some cases it can be overcome and in others it can’t. It’s down to the person maybe and their physicality ? Luckily I still haven’t come across a valid reason whereby I wouldn’t want to pleasure my wife to my best efforts. I owe her everything.

Keep strong and sorry for ramble

User
Posted 26 Jun 2022 at 19:18
I hear you knodel - you can start to wonder things like "if he loved me, wouldn't he make more effort?" and "what if he actually prefers life like this and never gets going again?" It is beyond his control so try not to take it personally, as hard as that is. Being on HT was once described movingly on here "I look at her lovely bum and I may as well be looking at a lump of concrete." What was beautiful about his posts was that it was clear his heart was still full of love for her; it was just the bit of his brain that talks to his genitals that wasn't working.

As Andy says, once the testosterone kicks back in, things may be very different - my OH, having never been that into sex, is like a rampant teenager and he was only on HT for 6 months!

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

User
Posted 01 Jul 2022 at 14:24
Re remission it's all about PSA, so long as PSA is where it should be you are in remission..

Sounds like your husband is making it all about his erection, that approach may not be the optimum because of the pressure he will subject himself too.

The injections did help me especially when I was in a in new relationship and needed the confidence it gave me me. Unfortunately I then found I couldn't orgasm, what fixed everything for me was learning to relax, accepting My erection was not what it was and learning to enjoy my new "normal".

User
Posted 26 Jun 2022 at 18:24

I agree it's tough my partner left as soon as I was diagnosed came home to empty house and bank account but I have battled on but no sexual thoughts hope things improve after Christmas when ht finished but I know it will probably take a long time if ever to get back to normal I agree it's never the same but at least you have each other that's the main thing gaz 👍

User
Posted 26 Jun 2022 at 19:02

Hello Knodel,

1.9 nmol/L is only a bit above castrate level (around 1.2 nmol/L), so I wouldn't expect anything at that level. Normal range is 6.7 nmol/L - 25.7 nmol/L (although this varies a bit depending who you ask, and your age). However, if his normal is, say 18, then even 6.7 may have no effect. He's only 5 months after ending HT, and that's really too soon to expect anything. 6 months is probably the minimum and I was around 9-10 months when it recovered, but it can be over 12 months.

So hang in there, and if he can get a Testosterone test with each PSA test, that might help to understand where you are. Excellent that he's using a pump by the way.

Obviously, that's not to say you can't try things earlier such as injections, PDE5 inhibitors, sex toys, etc, but he may struggle with no libido - this is going to vary from man to man.

User
Posted 26 Jun 2022 at 20:50

Originally Posted by: Online Community Member
As Andy says, once the testosterone kicks back in, things may be very different - my OH, having never been that into sex, is like a rampant teenager and he was only on HT for 6 months!



I think HT can affect people in very different ways. I was on HT for 18 months. It's over two years since I stopped HT, but my libido has never really recovered. Fortunately I have no partner, so only me affected by it. Hey ho, life goes on.

Cheers,

Chris

 

User
Posted 26 Jun 2022 at 20:57
Yes, that's very true. I was just trying to give Knodel something positive
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Jun 2022 at 09:02

Caverjet had me doubled over in pain.  Invicorp has been a game changer for many.

It will hopefully give your husband a pain free erection, but it won't make him want sex.  Libido and loss of confidence issues need to be given time.

But see if you can at least get invicorp-some areas, I understand, don't prescribe it.

User
Posted 30 Jun 2022 at 04:25

I come across many men whose prostate cancer treatment overlaps with their wife's menopause, and when the guy finally manages to get himself working again, his wife has got used to no sex, and it can be painful and unpleasant for her. If you both want to do something about it, there are things which can be done to counteract the effects of the menopause, but I think that's probably not a discussion for this forum.

User
Posted 30 Jun 2022 at 17:00

This is something else I hear a lot. Wife says to husband sex doesn't matter, I just want you alive.

But actually, sex matters to many husbands even if he's not going to have sex with wife. Many wives don't get this, and it makes it much more difficult for the husband to seek the help he requires. Many guys in relationships masturbate solo (just like many single guys do), whether or not they have sex with their wife, but don't necessarily tell their wives, and losing that ability is still a massive thing.

Edited by member 30 Jun 2022 at 17:04  | Reason: Not specified

User
Posted 30 Jun 2022 at 19:10

The bit about partners prioritising life over sex is definitely true. However, as humans we aspire for more. Most men would also prioritise preservation of life over sex, initially! However, as we overcome that hurdle and return to health, we want more, we want our libido to return to its former glory!

Edited by member 30 Jun 2022 at 19:10  | Reason: Not specified

User
Posted 02 Jul 2022 at 09:48
Yes to all Francij1 says - being a man, it takes a while to get that it is not all about our erections, and as you say relax into the new normal. Some men have found it helpful to think of it as being sensual rather than using the word sexual - but the bottom line Knodel is that it's time for him to get out of his low mood and start loving you physically. He clearly needs some support to get there. For me during the dark months (more than a year) it really helped to pleasure myself - but it was important then to bring that back into the relationship.

Not wanting to help you to your pleasure is difficult to understand, except through that "hard wiring" that tells a man he is not performing right if he is not penetrating, erect and orgasmic. For me there is not much that is more satisfying than pleasing my partner. It really helped that she was super clear she didn't need my erections and still loves me without them - but I am pretty sure you have already let him know that. It comes back, for me, to this: who could he talk to, that he really trusts, and explore his deeper feelings so he can let go whatever is blocking him?

User
Posted 02 Jul 2022 at 10:55

Originally Posted by: Online Community Member
Yes to all Francij1 says - being a man, it takes a while to get that it is not all about our erections, and as you say relax into the new normal. Some men have found it helpful to think of it as being sensual rather than using the word sexual - but the bottom line Knodel is that it's time for him to get out of his low mood and start loving you physically. He clearly needs some support to get there. For me during the dark months (more than a year) it really helped to pleasure myself - but it was important then to bring that back into the relationship.

Not wanting to help you to your pleasure is difficult to understand, except through that "hard wiring" that tells a man he is not performing right if he is not penetrating, erect and orgasmic. For me there is not much that is more satisfying than pleasing my partner. It really helped that she was super clear she didn't need my erections and still loves me without them - but I am pretty sure you have already let him know that. It comes back, for me, to this: who could he talk to, that he really trusts, and explore his deeper feelings so he can let go whatever is blocking him?

As humans we all deal with this life changing event differently. There is no 1 cap fit, we all have our different coping mechanism. I am 6weeks post surgery, and I have used my faith. Does it bother me this incontinence or ED? Of course it does, buy it does not consume me. Do I worry about whether I might not be able to have penetrative sex with my wife? Too right it does! Like you alluded to, it is a complete change of mindset to unlearn what we have learnt as regards what manhood is all about. The bottomline is we do not sometimes see the glass as half full. As men, we also tend not to show our emotions, I know I am guilty of that. My fears, my innermost worries and concern stay buried there!

Edited by member 02 Jul 2022 at 10:55  | Reason: Not specified

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User
Posted 26 Jun 2022 at 18:24

I agree it's tough my partner left as soon as I was diagnosed came home to empty house and bank account but I have battled on but no sexual thoughts hope things improve after Christmas when ht finished but I know it will probably take a long time if ever to get back to normal I agree it's never the same but at least you have each other that's the main thing gaz 👍

User
Posted 26 Jun 2022 at 19:02

Hello Knodel,

1.9 nmol/L is only a bit above castrate level (around 1.2 nmol/L), so I wouldn't expect anything at that level. Normal range is 6.7 nmol/L - 25.7 nmol/L (although this varies a bit depending who you ask, and your age). However, if his normal is, say 18, then even 6.7 may have no effect. He's only 5 months after ending HT, and that's really too soon to expect anything. 6 months is probably the minimum and I was around 9-10 months when it recovered, but it can be over 12 months.

So hang in there, and if he can get a Testosterone test with each PSA test, that might help to understand where you are. Excellent that he's using a pump by the way.

Obviously, that's not to say you can't try things earlier such as injections, PDE5 inhibitors, sex toys, etc, but he may struggle with no libido - this is going to vary from man to man.

User
Posted 26 Jun 2022 at 19:18
I hear you knodel - you can start to wonder things like "if he loved me, wouldn't he make more effort?" and "what if he actually prefers life like this and never gets going again?" It is beyond his control so try not to take it personally, as hard as that is. Being on HT was once described movingly on here "I look at her lovely bum and I may as well be looking at a lump of concrete." What was beautiful about his posts was that it was clear his heart was still full of love for her; it was just the bit of his brain that talks to his genitals that wasn't working.

As Andy says, once the testosterone kicks back in, things may be very different - my OH, having never been that into sex, is like a rampant teenager and he was only on HT for 6 months!

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

User
Posted 26 Jun 2022 at 20:50

Originally Posted by: Online Community Member
As Andy says, once the testosterone kicks back in, things may be very different - my OH, having never been that into sex, is like a rampant teenager and he was only on HT for 6 months!



I think HT can affect people in very different ways. I was on HT for 18 months. It's over two years since I stopped HT, but my libido has never really recovered. Fortunately I have no partner, so only me affected by it. Hey ho, life goes on.

Cheers,

Chris

 

User
Posted 26 Jun 2022 at 20:57
Yes, that's very true. I was just trying to give Knodel something positive
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Jun 2022 at 21:39
I don’t think you are being selfish at all. You’re only human and yes it’s hard to repress urges. As above it varies in each man’s case and what they were like pre-treatment. And then how they are affected post treatment.

I was simply terrified pre surgery to the extent of nearly not having it. It left me utterly impotent but I started on recovery asap. No loss of libido and was terrified I wouldn’t be able to please my wife. So we found every way possible and I guess 2 1/2 yrs later I was as near as I was going to get to being back to normal. Couldn’t get enough to be honest , caused problems. Then the dreaded recurrence and having to start HT for the rest of my life. I’m 18 months in. Yes loss of libido undoubtedly , but still can have an erection even now I guess due to 7 yrs of my pump use and semi-regular Tadalafil. Orgasm can be tricky for me but I’m still utterly happy to pleasure my wife whenever however. I’m happy to forgo and please her. That gives me enough pleasure.

Some men suffer in silence about anything rather than talk about things. I believe the psychological damage of cancer and impotence can be crippling to some men , and a challenge to others.

In some cases it can be overcome and in others it can’t. It’s down to the person maybe and their physicality ? Luckily I still haven’t come across a valid reason whereby I wouldn’t want to pleasure my wife to my best efforts. I owe her everything.

Keep strong and sorry for ramble

User
Posted 27 Jun 2022 at 09:02

Caverjet had me doubled over in pain.  Invicorp has been a game changer for many.

It will hopefully give your husband a pain free erection, but it won't make him want sex.  Libido and loss of confidence issues need to be given time.

But see if you can at least get invicorp-some areas, I understand, don't prescribe it.

User
Posted 27 Jun 2022 at 09:14

Cheshire Chris- would you not be able to get Testosterone Replacement Therapy? I know its controversial, but once your are in remission, it could be an option? Living with low testosterone can cause a lot of problems, apart from low libido.

User
Posted 27 Jun 2022 at 12:31

It would be good to get Testosterone measured so you know where that stands, but low libido isn't always caused by low Testosterone.

Testosterone replacement therapy should now be available to former prostate cancer patients who are fully in remission with no evidence of disease. There has been research to show this is unlikely to make the cancer come back if it wasn't otherwise going to do so.

User
Posted 27 Jun 2022 at 12:48

Originally Posted by: Online Community Member

Cheshire Chris- would you not be able to get Testosterone Replacement Therapy? I know its controversial, but once your are in remission, it could be an option? Living with low testosterone can cause a lot of problems, apart from low libido.

As I read it Chris is on HT.  If he was to be given HRT, that would have the opposite effect of HT so would not be compatible. .

Barry
User
Posted 27 Jun 2022 at 13:12

Not sure how it goes if you have had radiotherapy on the prostate if having sex again can do any further damage to prostate being on hormone therapy it's not a issue at the moment but was thinking that my sex life is over now 

User
Posted 27 Jun 2022 at 13:53

Originally Posted by: Online Community Member

Cheshire Chris- would you not be able to get Testosterone Replacement Therapy? I know its controversial, but once your are in remission, it could be an option? Living with low testosterone can cause a lot of problems, apart from low libido.

I was on bicalutimide as a primary HT, which seems to be much less common than the injectable hormones. Bicalutimide works differently - it doesn't block the production of testosterone, but its take-up by other cells in the body - so my testosterone levels probably wouldn't have fallen during my HT. I don't know whether bicalutimide has different side-effects on libido than the injectable hormones; all I can say is that everything still functions, but the desire is totally absent. 

Cheers,

Chris

 

User
Posted 27 Jun 2022 at 13:55

Originally Posted by: Online Community Member

As I read it Chris is on HT.  If he was to be given HRT, that would have the opposite effect of HT so would not be compatible. .



No, I finished my HT in Feb 2020, Barry, so approaching two and a half years ago. 

Cheers,

Chris

 

User
Posted 27 Jun 2022 at 20:53
Sorry thinking wrong Chris!
Barry
User
Posted 28 Jun 2022 at 00:44

Originally Posted by: Online Community Member
I was on bicalutimide as a primary HT, which seems to be much less common than the injectable hormones. Bicalutimide works differently - it doesn't block the production of testosterone, but its take-up by other cells in the body - so my testosterone levels probably wouldn't have fallen during my HT. I don't know whether bicalutimide has different side-effects on libido than the injectable hormones; all I can say is that everything still functions, but the desire is totally absent.

About 20% of men on injections can still get erections. I haven't seen a figure for bicalutamide, but it is higher. In both cases, things like PDE5 inhibitors and extra stimulation can increase the numbers a bit too.

Bicalutamide (only when used by itself) actually pushes your Testosterone levels up, as a result of blocking the androgen receptors in the hypothalamus and pituitary glands which monitor the Testosterone levels and adjust it.

Edited by member 28 Jun 2022 at 00:46  | Reason: Not specified

User
Posted 29 Jun 2022 at 23:48

I started on bicalutimide for almost a month, then prostap injections every three months and radiotherapy at month seven this July will see me take my last hormone injection as my oncologist says it’s not as effective after 18months by the time it wears off I will have been on it for 21 months in total  my libido is non existent but I can gain an erection if I watch porn I dearly love my wife and want to satisfy her, sadly since I started my treatment my wife’s sex drive seems to have sank lower than whale poo….. the thought of a sexless marriage is a living death as far as I am concerned.

User
Posted 30 Jun 2022 at 04:25

I come across many men whose prostate cancer treatment overlaps with their wife's menopause, and when the guy finally manages to get himself working again, his wife has got used to no sex, and it can be painful and unpleasant for her. If you both want to do something about it, there are things which can be done to counteract the effects of the menopause, but I think that's probably not a discussion for this forum.

User
Posted 30 Jun 2022 at 11:19
Probably not but we can all talk about the importance of lube!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Jun 2022 at 12:51

Andy62, you are absolutely right. My wife's is currently at the onset of menopause (peri-menopause or something), my surgery and subsequent lack of action means our libido is now aligned. She does not appear overly concerned whether I regain sexual functions or not. So in a way there is no pressure (at least for the time being), however my not getting an erection is solely my issue, and think in my head not being able to get a full erection does play on my mind on sometimes.

User
Posted 30 Jun 2022 at 17:00

This is something else I hear a lot. Wife says to husband sex doesn't matter, I just want you alive.

But actually, sex matters to many husbands even if he's not going to have sex with wife. Many wives don't get this, and it makes it much more difficult for the husband to seek the help he requires. Many guys in relationships masturbate solo (just like many single guys do), whether or not they have sex with their wife, but don't necessarily tell their wives, and losing that ability is still a massive thing.

Edited by member 30 Jun 2022 at 17:04  | Reason: Not specified

User
Posted 30 Jun 2022 at 19:10

The bit about partners prioritising life over sex is definitely true. However, as humans we aspire for more. Most men would also prioritise preservation of life over sex, initially! However, as we overcome that hurdle and return to health, we want more, we want our libido to return to its former glory!

Edited by member 30 Jun 2022 at 19:10  | Reason: Not specified

User
Posted 30 Jun 2022 at 23:25
Clearly sex is important to many wives too, my wife is on HRT for osteoporosis, I can personally vouch for the many and varied benefits of HRT!

Gaz61 your xwife was a piece of sh¹t, mine did the same thing, I thought my life was over. Hopefully you will get off the hormones soon and believe me there are many wonderful women out there who are not selfish bastards!

Knodel,. Male sexual response is a funny thing, a lack of confidence caused by a life threatening illness and months of HT will have badly knocked his confidence. Have you tried asking him to help you masturbate? He may feel vulnerable when you come on to him and hence back away rather than risk failure, asking him to do you a favour without the pressure for full sex might help take the pressure off - certainly helped me!

User
Posted 01 Jul 2022 at 10:20

@Francij1- My husband just doesn't feel like even helping me to masturbate, yet, he still associated that with sex, so I guess I need to be patient!

I'm 55 now, and in September I will hopefully be post-menopausal. However I've still got a good sex drive, which I wish was lower now! It's quite probable that I will go on HRT after September, as I have scoliosis, and if I got osteoporosis, the scoliosis could get worse. I'm also getting treatment with a chiropractor since end of January. 

 

My husband feels that if he gets a proper erection with the injections (he's got an appointment in a few weeks) will maybe change things, because using the Vitaros cream sometimes gives him more feelings down below!

Does anyone know how doctors measure when you're in remission? Is it 5 years after your last treatment, ie., in my husband's case (finished HT end of January)?

User
Posted 01 Jul 2022 at 14:24
Re remission it's all about PSA, so long as PSA is where it should be you are in remission..

Sounds like your husband is making it all about his erection, that approach may not be the optimum because of the pressure he will subject himself too.

The injections did help me especially when I was in a in new relationship and needed the confidence it gave me me. Unfortunately I then found I couldn't orgasm, what fixed everything for me was learning to relax, accepting My erection was not what it was and learning to enjoy my new "normal".

User
Posted 02 Jul 2022 at 09:48
Yes to all Francij1 says - being a man, it takes a while to get that it is not all about our erections, and as you say relax into the new normal. Some men have found it helpful to think of it as being sensual rather than using the word sexual - but the bottom line Knodel is that it's time for him to get out of his low mood and start loving you physically. He clearly needs some support to get there. For me during the dark months (more than a year) it really helped to pleasure myself - but it was important then to bring that back into the relationship.

Not wanting to help you to your pleasure is difficult to understand, except through that "hard wiring" that tells a man he is not performing right if he is not penetrating, erect and orgasmic. For me there is not much that is more satisfying than pleasing my partner. It really helped that she was super clear she didn't need my erections and still loves me without them - but I am pretty sure you have already let him know that. It comes back, for me, to this: who could he talk to, that he really trusts, and explore his deeper feelings so he can let go whatever is blocking him?

User
Posted 02 Jul 2022 at 10:55

Originally Posted by: Online Community Member
Yes to all Francij1 says - being a man, it takes a while to get that it is not all about our erections, and as you say relax into the new normal. Some men have found it helpful to think of it as being sensual rather than using the word sexual - but the bottom line Knodel is that it's time for him to get out of his low mood and start loving you physically. He clearly needs some support to get there. For me during the dark months (more than a year) it really helped to pleasure myself - but it was important then to bring that back into the relationship.

Not wanting to help you to your pleasure is difficult to understand, except through that "hard wiring" that tells a man he is not performing right if he is not penetrating, erect and orgasmic. For me there is not much that is more satisfying than pleasing my partner. It really helped that she was super clear she didn't need my erections and still loves me without them - but I am pretty sure you have already let him know that. It comes back, for me, to this: who could he talk to, that he really trusts, and explore his deeper feelings so he can let go whatever is blocking him?

As humans we all deal with this life changing event differently. There is no 1 cap fit, we all have our different coping mechanism. I am 6weeks post surgery, and I have used my faith. Does it bother me this incontinence or ED? Of course it does, buy it does not consume me. Do I worry about whether I might not be able to have penetrative sex with my wife? Too right it does! Like you alluded to, it is a complete change of mindset to unlearn what we have learnt as regards what manhood is all about. The bottomline is we do not sometimes see the glass as half full. As men, we also tend not to show our emotions, I know I am guilty of that. My fears, my innermost worries and concern stay buried there!

Edited by member 02 Jul 2022 at 10:55  | Reason: Not specified

 
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