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High libido partner dealing with HT (UPDATE March 2024)

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User
Posted 30 Oct 2023 at 22:48

My husband was diagnosed last winter/spring and our marriage has taken a beating.   Prior to cancer, I would say in general he is not big on communication and doesn't function at all under stress and I get anxious pretty quickly.  In addition we have a libido mismatch, where mine is significantly higher.  In good times, however, we are fabulous.  I always joked that we were a "fair weather couple."

Needless to say, prostate cancer has been like a field of land mines for our marriage.  It feels like at every turn there's another disaster awaiting us.

The current issue on the table is sex and libido.  Prior to his surgery, I had a ton of anxiety about how things would play out.  To be clear, I wasn't worried at all about ED.  Despite (or maybe because of) my high libido, I don't need spontaneity, don't need an erection, don't need PIV and I am game for any kind of modifications necessary in order for us to connect.  Where there is a will, there is a way!

We were extremely lucky post surgery in that he was almost immediately able to get a usable erection with just daily cialis.  And he seemed (sort of) motivated.

Then his first PSA came back not undetectable.  We are in the process of getting a second opinion but probably within the next month, he will start HT followed by salvage RT.

The thought of HT is devastating (to me.)  We've been limping along with a libido mismatch that was already challenging.  We now know that his testosterone is low which may have been the issue all along, but now there is nothing to be done about that, ever.  And even if the course of HT is only six months, his chances of recovering to any kind of functional baseline are not great.  And now he is having so much anxiety about more treatment and the fact that he still has cancer that he may as well be on HT, because his libido has already completely disappeared.

I want so badly to be the good wife who can suck it up and somehow imagine a satisfying marriage and life with a partner who does not desire me.  But I can't get there.  Where there's a will, there's a way, sure.  But what if there is no will?  And what if being desired by my spouse is fundamentally important to me?  How does one cope without that?  I am struggling to reframe things in a way I can manage. I worry that he will just shrug and we'll be done with an intimate relationship for good.  But I also read about husbands trying to meet their wives physical needs even when they aren't into it and that sounds awful to me.  It's not about getting off. The whole experience hinges on him being into it.

Leaving is not an option.  Full stop.  I would never do that to him or my children. But I feel trapped in a a very depressing circumstance of going through the motions to keep the family happy while trying to suppress the fact that I am miserable.

I realize no one like my husband is here, because he would *never* go to an online forum, but hoping someone out there can help me look at these constraints in some more positive light.  Right now I feel like I am free falling into clinical depression.

Many thanks

 

 

Edited by member 26 Mar 2024 at 14:32  | Reason: Not specified

User
Posted 30 Oct 2023 at 22:48

My husband was diagnosed last winter/spring and our marriage has taken a beating.   Prior to cancer, I would say in general he is not big on communication and doesn't function at all under stress and I get anxious pretty quickly.  In addition we have a libido mismatch, where mine is significantly higher.  In good times, however, we are fabulous.  I always joked that we were a "fair weather couple."

Needless to say, prostate cancer has been like a field of land mines for our marriage.  It feels like at every turn there's another disaster awaiting us.

The current issue on the table is sex and libido.  Prior to his surgery, I had a ton of anxiety about how things would play out.  To be clear, I wasn't worried at all about ED.  Despite (or maybe because of) my high libido, I don't need spontaneity, don't need an erection, don't need PIV and I am game for any kind of modifications necessary in order for us to connect.  Where there is a will, there is a way!

We were extremely lucky post surgery in that he was almost immediately able to get a usable erection with just daily cialis.  And he seemed (sort of) motivated.

Then his first PSA came back not undetectable.  We are in the process of getting a second opinion but probably within the next month, he will start HT followed by salvage RT.

The thought of HT is devastating (to me.)  We've been limping along with a libido mismatch that was already challenging.  We now know that his testosterone is low which may have been the issue all along, but now there is nothing to be done about that, ever.  And even if the course of HT is only six months, his chances of recovering to any kind of functional baseline are not great.  And now he is having so much anxiety about more treatment and the fact that he still has cancer that he may as well be on HT, because his libido has already completely disappeared.

I want so badly to be the good wife who can suck it up and somehow imagine a satisfying marriage and life with a partner who does not desire me.  But I can't get there.  Where there's a will, there's a way, sure.  But what if there is no will?  And what if being desired by my spouse is fundamentally important to me?  How does one cope without that?  I am struggling to reframe things in a way I can manage. I worry that he will just shrug and we'll be done with an intimate relationship for good.  But I also read about husbands trying to meet their wives physical needs even when they aren't into it and that sounds awful to me.  It's not about getting off. The whole experience hinges on him being into it.

Leaving is not an option.  Full stop.  I would never do that to him or my children. But I feel trapped in a a very depressing circumstance of going through the motions to keep the family happy while trying to suppress the fact that I am miserable.

I realize no one like my husband is here, because he would *never* go to an online forum, but hoping someone out there can help me look at these constraints in some more positive light.  Right now I feel like I am free falling into clinical depression.

Many thanks

 

 

Edited by member 26 Mar 2024 at 14:32  | Reason: Not specified

User
Posted 31 Oct 2023 at 10:14
Very moving post and honest input. Maybe read my profile for some insight. I’ve been on HT for 3 yrs and will be on it for life as I’m incurable aged 56. I still have libido though lowered , and can still get an erection and achieve penetration. But if you read , you’ll see I’ve put 8 yrs of effort in to remain QOL and intimacy. In honesty my biggest hurdle is my wife’s lack of libido due to menopause. But since I’ve been on HT I’ve softened in my nature and I believe we are closer than ever. There is certainly desire and attraction for her , and her for me , but our closer intimacy and friendship means we don’t need to jump into bed as much. But we still do when the stars align and it’s lovely and definitely not a chore.

Stay positive and don’t ever stop talking ok. Talking honestly fixes most problems.

User
Posted 31 Oct 2023 at 13:03
You really need to talk to your partner as honestly as you speak to this forum.

You only get one life and you are not required to be unhappy.

I speak as someone who went through divorce after prostate cancer, there is no benefit to hanging on to something for the sake of it.

User
Posted 29 Mar 2024 at 19:20

Originally Posted by: Online Community Member

Hi Skye 28 - I got diagnosed in my late 40s and one of my biggest fears is that my wife feels exactly like you. I try to take pills and initiate sex, but it just seems to happen so infrequently, about once a month I would say. I do think doctors under play this side of it. It is far and away the worse side effect for me. My advice would be to talk and let your OH know haw you are feeling. Once we do get going, I enjoy it, even though I rarely orgasm. In a funny kind of way it is nice to know and reassuring that my wife is still keen and fancies me (ok, probably sex more than me!). 

That rings so true with me. I’m just NOT interested but once we get going I REALLY enjoy it. Penetrative sex just does nothing for me, but since I bought a male maturabator(Lovehoney) I can have VERY strong orgasms…and I am a lot older than you. I think talking and experimenting is SO important to find something that can satisfy you both…we’ve managed that, and although it’s not the same it is still good.

User
Posted 31 Oct 2023 at 07:20

Tortuga, firstly I assume you are in the USA. What HT is he on, or going to be on. I was recently put on bicalutamide for six months in conjunction with my SABR treatment. Yes it has had an effect on my labido but not the devastating effect you are fearing.

Hope all goes well with his treatment.

Thanks Chris 

 

User
Posted 03 Nov 2023 at 00:40

Thank you all for these thoughtful responses.  I have worked so hard to communicate what I am feeling to him with the hope that might help.  But needless to say it is always such a delicate balance.  He didn't choose to have this happen to him.  No one does.  But we all react differently.  I fear his reaction will be more fear based and less committed and dedicated to the relationship than what you all describe.  You are impressive husbands!

I suppose I just need to stay the course, speak my truth and see where it leads us.  But it still makes me so sad to know that we would have been ok if not for this diagnosis.  And unlike other types of loss, where you can grieve cleanly and someday move on, every day we are together is like losing what we once had all over again.  It is very challenging to say the least.

 

 

User
Posted 16 Nov 2023 at 23:25

Originally Posted by: Online Community Member

... feel a bit guilty and useless initiating a bit of intimacy with my wife ...

You are saying what so many men say. Yet what's wrong with seeking intimacy without an erection?? Our support group discussed this issue this morning and many agreed that intimacy is what it is all about, not necessarily penetration, particularly as we all get older.

User
Posted 18 Nov 2023 at 20:30

Originally Posted by: Online Community Member

 I suspect most men of our age were used to initiating sex, it was usually the bloke who made the first move. I know I used to. Now post op you lose your confidence, you can't do what you once did, the spontaneity's gone. You're then hoping that your partner will start the ball rolling, but for years they've not been used to that. 

You are getting to the heart of the change that is needed for us and our partners. We can't do things the way we used to. I reckon often each partner expects the other one to behave the way they used to. But that isn't possible, so we both need to change. Anyone who cares enough to be reading this - I challenge you to make the first move, in a good way, that doesn't presume too much from you partner and gives them room to respond.

Like you said, I can't do what I once did. But I can still love my partner and find new ways to show my love. And ask for what I want - being prepared not to get it.

User
Posted 26 Mar 2024 at 14:29

I am the original poster.  Adding an update to this thread:

My husband ultimately started Orgovyx almost two months ago.  As expected, he has no interest in sex and no ability to get an erection or have an orgasm.  I've tried and discovered that being a woman trying to initiate sex with someone who has zero desire for you may be the most humiliating experience of one's life.

But he is doing 'great.' According to him he has no major side effects.  This is whay he reports to his doctors.  ADT is a breeze. He has no interest in sex, but he doesn't care.

I am extremely depressed.  It is even worse knowing that he thinks everything is fine, except for my attitude, for lack of a better word.   I have told him how I am feeling, and he is kind -- will give me a hug -- but I don't feel like I have a real marriage any more.  

As I mentioned initial post, we already had a libido mismatch issue.  This has just changed the difficult to the impossible.

I am 52, attractive, in shape and having a physical relationship is important to me and will be for the forseeable future.  Menopause already happened a didn't change my drive at all.  I am not sure physical intimacy ever was important to him, but it definitely is not now.   He is a nice companion and we have a good friendship.  That is enough for him.  It is not enough for me.

I don't want to blow up my family, and I certainly can't kick my sick husband to the curb, who really isn't doing anything wrong.  But I am miserable, unwanted, lonely and feel like there is no way out of this situation.  My capacity for feeling joy about anything is gone.  And because he is the one with cancer, expressing any of this makes me a monster.

I've been seeing a therapist, but it isn't really helping.  Just not sure where to go from here.  

User
Posted 31 Oct 2023 at 12:00

Aloha,Tortuga. 

Most couples dealing with prostate cancer will find that, at times, its going to test their relationship to the limit. Most men are going to feel emasculated, Your fella's anxiety and reluctance to communicate may well exacerbate the problem.  

What you are feeling will be what thousands of other wives dealing with this disease are feeling too. I know a lot of what you're saying would resonate with my wife. 

Fortunately, we could see from a very early stage what damage the disease was causing to our relationship. We were drifting apart but we're now doing our best to pull ourselves back together.  I will continue to try my hardest to make her feel as special as I did prior to this setback. However, despite our best efforts, we have not ruled out the possibility of having to seek out professional medical and psychological support.

We've also found that no matter how sad a situation is, it's imperative to try and keep a sense of humour.  

All the best and I hope you can work things out.

Adrian.

 

Edited by member 31 Oct 2023 at 22:22  | Reason: Not specified

User
Posted 31 Oct 2023 at 17:59
Tortuga I’m on Decapeptyl 3 monthly. I asked for it after researching it causes less side effects. They all achieve the same end but I’ve been good on this. Zero weight gain , no moobs , but yes lowered but not destroyed libido , and hot flushes which frankly are very bearable even after all this time. A bit of brain fog but I still manage to fly model planes upside down from stood on the ground. Parking is a different matter 😆😆
User
Posted 16 Nov 2023 at 16:36

I really feel for you, and the anguish you are experiencing. What you have said is true, that you just have to go through with it and keep speaking your truth and asking for what you want.

For me, although not being on HT, the nearly 4 years since prostatectomy have been a lot about allowing myself to receive sexual pleasure and attention. Something deep in my wiring called me to be the initiator and now things have changed. It sounds like it might take your husband even longer to adapt to his new reality.

One thing I know from talking to a lot of men in this situation, is that many of us are actually still quite horny, just don't quite know how to show it to our partners. It sounds silly to say out loud, but somewhere deep inside, there is a voice telling us "you're not a real man if you can't get it up." The fear of being shamed for not having an erection rings in our collective ears regardless of whether our actual partners, like you, are quite open to alternatives.

It is a journey.

User
Posted 17 Nov 2023 at 08:39
Erections are part of a positive feedback "loop" that ultimately and ideally leads to a successful climax for both parties.

I think they are intrinsic to mutual human arousal and some women cannot entertain sex without the visual and tactile evidence of desire that an erect penis provides.

Having been on the dating scene for a couple of years after my prostatectomy that was certainly my experience. Otherwise passionate experiences rapidly fell apart when the prospect of pumping or injecting were introduced.

Fortunately guys in stable relationships can fix their technique assuming their partner is willing to learn and experiment. Guys who are dating just have to grin and bear it and keep trying until they find someone who is prepared to look beyond the erection!

User
Posted 18 Nov 2023 at 16:40

Originally Posted by: Online Community Member

Like you, I can't presently get a natural erection, but have about a 70% hit rate with Invicorp. We're both very lucky, many can't get an aided stiffy. I'm not a sex therapist but feel the difficulty with men who rely on aided erections is introducing that into love making. Adding an unnatural procedure, pumping or injections, to what, for decades, you've done naturally takes a lot of adapting to. 

I also think a lot of men have a different view on intimacy to women. I always thought sexual intimacy, was almost the same as foreplay, a lead up to full penetrative sex, but my wife ensures me this isn't the case. 

You are absolutely right, adding that extra procedure to sex is the issue, particularly when you perceive it is half hearted and she might just be game just to satisfy you. I am far too sensitive to dash into the bathroom to pump the little man up, when I feel, she is not really bothered.

I suppose, I should be grateful from where I was exactly 1yr ago, nothing worked, injection or pump and I had to resort to a strap-on!

User
Posted 18 Nov 2023 at 17:20

I agree it's never the same after treatment we decided to give it up as sex as it was is over now we have become closer and don't even discuss it any more it's sad but we don't want to mess with pumps or injections takes all the fun away but we are closer than ever 👍

User
Posted 18 Nov 2023 at 17:46

Originally Posted by: Online Community Member

I agree it's never the same after treatment we decided to give it up as sex as it was is over now we have become closer and don't even discuss it any more it's sad but we don't want to mess with pumps or injections takes all the fun away but we are closer than ever 👍

I think that's the way we'll end up Gaz. We still love each other, and as someone once said," Love conquers all."

Tortuga, I apologise for diverting from your conversation, but at least the unintended sidetracking gives you an idea of how some blokes feel.

Late edit

I've just googled. It was Virgil  who first said  "Omina Vincent Amor" Loves conquers all. That surprised me, I thought he was the pilot Thunderbird 2. 🫤

Adrian

Edited by member 18 Nov 2023 at 18:15  | Reason: Not specified

User
Posted 26 Mar 2024 at 15:04

Wow, what a tricky situation. 

We've got to the stage, by mutual agreement, of sleeping in different rooms. Nothing to do with sex or intimacy, or drifting apart, it's purely the only way, at this time, that we can both manage to get some decent sleep. Hopefully it'll not be a permanent thing.

Our sex life is nothing like it used to be but we're adapting to that. What we have got going for us, is we both have a good sense of humour and somehow often manage to giggle about the situation. As Ricky Gervais once said, "If you can laugh in the face of adversity, you're bullet-proof."

Having said that, there are obviously times, on bad days, when I'm sure we both shed a tear or two.

Your incapacity to enjoy anything in life, maybe due clinical depression. Have you seen a doctor? 

I hope you both find a way of resolving your issues.

Edited by member 26 Mar 2024 at 15:32  | Reason: Additional text.

User
Posted 26 Mar 2024 at 15:29

Oh Tortuga I feel so sorry for you, it must be so difficult. However I know how your husband feels as well…like me, just no interest in sex. Although I’m a lot older than you we had a very active sex life before I started ADT, now nothing. It’s a shame though that your husband won’t try, because I believe there ARE ways of giving each other a lot of pleasure, even though the thought of penetrative sex just doesn’t do anything for me. I’ve lost most of the sensation for that, but other parts of my body are still extremely sensitive and with a little experimentation I can still have VERY intense orgasms. You just need to experiment.

Your husband is lucky if that is the only side effect he is having with ADT. If that was me I would also feel lucky and would happily accept having zero libido.

You say you’ve been to a therapist but it sounds like you need to see someone together, but then again maybe he doesn’t want to? That would be a shame because it might help him come to terms with how YOU are feeling…after all, there are TWO people going through this journey even if only one of them has PCa..

I’m sorry but I can’t really think of anything else other than to wait until the ADT is over and hopefully he gets his libido back. Has he thought about asking if he can come off ADT early? I did because I have had SO many problems, and the Onco is happy for me to come off it after 2 years….I can’t wait! Maybe if his results are stable they might say for the sake of his (or yours maybe) QOL, stopping early might be an option.

Good Luck,

Derek

User
Posted 26 Mar 2024 at 15:40
The way I see this , is that if he had very low sex drive before then the ADT has crippled him. My libido was always sky high and I’ve been on ADT for 3 years. I still want sex a lot , and definitely more than my wife. We don’t bother with erection as it’s not important to her. So I stopped my meds and have offered to use injections but she not interested. So we just find the other obvious ways fairly regularly. I need to be relaxed to orgasm and get fairly erect.

I guess he just not interested which is very hard for you. Feel very sorry for you. No real answer other than he should just try at least …..

User
Posted 26 Mar 2024 at 17:29

Thank you.  I don't have enough posts to be able to reply privately.  But thank you.

User
Posted 28 Mar 2024 at 17:09

Tortuga - I hear you. I now live with my best friend not husband or lover. I’m in my late 40’s and am so desperate for the intimacy/sex we used to have but it’s just disappeared. I think there’s a tendency to assume women after menopause (which I’ve gone through) sort of turn off to that side but I simply don’t think that’s the case. 

How to cope? I really don’t know. I feel very down sometimes but I think the worse thing is that we can’t change anything. I think you just get used to it. 

User
Posted 29 Mar 2024 at 03:06

Hi Skye 28 - I got diagnosed in my late 40s and one of my biggest fears is that my wife feels exactly like you. I try to take pills and initiate sex, but it just seems to happen so infrequently, about once a month I would say. I do think doctors under play this side of it. It is far and away the worse side effect for me. My advice would be to talk and let your OH know haw you are feeling. Once we do get going, I enjoy it, even though I rarely orgasm. In a funny kind of way it is nice to know and reassuring that my wife is still keen and fancies me (ok, probably sex more than me!). 

User
Posted 29 Mar 2024 at 12:26

Originally Posted by: Online Community Member

Once we do get going, I enjoy it, even though I rarely orgasm. In a funny kind of way it is nice to know and reassuring that my wife is still keen and fancies me

Thank you for saying this (and apologies for not quoting your self-put-down at the end) - this way it is an acknowledgement that you can still love and make love with your wife. I am in a similar place to you and I find that there are a myriad of ways that sex with my wife (and also with myself) is completely and absolutely wonderful. Energetically I still ejaculate fountains of love into her even though physically that never includes fluid and seldom includes full-on orgasm. 

User
Posted 29 Mar 2024 at 15:41

Originally Posted by: Online Community Member

 Energetically I still ejaculate fountains of love into her even though physically that never includes fluid and seldom includes full-on orgasm. 

Bloomin' eck I've just had to turn the thermostat down. 😉

 

Edited by member 29 Mar 2024 at 16:24  | Reason: Emoji

User
Posted 01 Apr 2024 at 12:35

Thanks. I’ve been advised before to speak to him about it but I’ve made a decision not to discuss with my husband. I feel he’s been through enough already and I know from trying early on that he’s not able to go through the motions. It would really upset him and I love him too much to put that burden on him as well. My advice to Tortuga is that it’s basically a grieving process for both husband and wife on top of everything else going on. As time goes on I am more thankful that his health continues to be very good despite an awful initial diagnoses. Time does heal and we have a brilliant life generally with a lot of laughs and fun times. 

User
Posted 01 Apr 2024 at 12:45

Originally Posted by: Online Community Member

Thanks. I’ve been advised before to speak to him about it but I’ve made a decision not to discuss with my husband. I feel he’s been through enough already and I know from trying early on that he’s not able to go through the motions. It would really upset him and I love him too much to put that burden on him as well. My advice to Tortuga is that it’s basically a grieving process for both husband and wife on top of everything else going on. As time goes on I am more thankful that his health continues to be very good despite an awful initial diagnoses. Time does heal and we have a brilliant life generally with a lot of laughs and fun times. 

Everyone is different so good luck to both of you😊

Derek

User
Posted 01 Apr 2024 at 21:12

Tortuga….It sounds like an awkward situation. I can understand how you feel, but also how your husband feels. Though maybe he should try to be more understanding. I am a similar age to you. 
We have always had the opposite problem. Dh has always had a very high sex drive. I am 15 years younger but have never kept up. If we were the same age I’m not sure we’d be together still as 15 years ago when he was the age I am now he’d have been wanting it twice a day, I’m more a twice a year person now (I am exaggerating!)

 

Back in October he was put on HT for life. It is so strange how different he is. He used to be so bad tempered when he’d been a week without sex. He’s not like that now, so that’s a plus. I’d say his libido is still higher than mine though. He keeps suggesting that I find a younger man for an affair, as long I come home to him at the end of the day, but theres no way I’d ever consider that. I do miss the person he was though. Even though he drove me mad. We can’t even cuddle up in bed anymore, I am hot all night due to peri menopause. He gets lots of hot flushes. So we stay apart. I miss that more than anything.

On the plus side, your dh will come off the HT so maybe things will improve. You could both see a therapist. That should help you both see things from the other persons perspective. 

 

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User
Posted 31 Oct 2023 at 07:20

Tortuga, firstly I assume you are in the USA. What HT is he on, or going to be on. I was recently put on bicalutamide for six months in conjunction with my SABR treatment. Yes it has had an effect on my labido but not the devastating effect you are fearing.

Hope all goes well with his treatment.

Thanks Chris 

 

User
Posted 31 Oct 2023 at 10:14
Very moving post and honest input. Maybe read my profile for some insight. I’ve been on HT for 3 yrs and will be on it for life as I’m incurable aged 56. I still have libido though lowered , and can still get an erection and achieve penetration. But if you read , you’ll see I’ve put 8 yrs of effort in to remain QOL and intimacy. In honesty my biggest hurdle is my wife’s lack of libido due to menopause. But since I’ve been on HT I’ve softened in my nature and I believe we are closer than ever. There is certainly desire and attraction for her , and her for me , but our closer intimacy and friendship means we don’t need to jump into bed as much. But we still do when the stars align and it’s lovely and definitely not a chore.

Stay positive and don’t ever stop talking ok. Talking honestly fixes most problems.

User
Posted 31 Oct 2023 at 12:00

Aloha,Tortuga. 

Most couples dealing with prostate cancer will find that, at times, its going to test their relationship to the limit. Most men are going to feel emasculated, Your fella's anxiety and reluctance to communicate may well exacerbate the problem.  

What you are feeling will be what thousands of other wives dealing with this disease are feeling too. I know a lot of what you're saying would resonate with my wife. 

Fortunately, we could see from a very early stage what damage the disease was causing to our relationship. We were drifting apart but we're now doing our best to pull ourselves back together.  I will continue to try my hardest to make her feel as special as I did prior to this setback. However, despite our best efforts, we have not ruled out the possibility of having to seek out professional medical and psychological support.

We've also found that no matter how sad a situation is, it's imperative to try and keep a sense of humour.  

All the best and I hope you can work things out.

Adrian.

 

Edited by member 31 Oct 2023 at 22:22  | Reason: Not specified

User
Posted 31 Oct 2023 at 13:03
You really need to talk to your partner as honestly as you speak to this forum.

You only get one life and you are not required to be unhappy.

I speak as someone who went through divorce after prostate cancer, there is no benefit to hanging on to something for the sake of it.

User
Posted 31 Oct 2023 at 16:01

Yes, US.  Lupron is the plan from first dr.  Going for second opinion.

Thank you

User
Posted 31 Oct 2023 at 17:59
Tortuga I’m on Decapeptyl 3 monthly. I asked for it after researching it causes less side effects. They all achieve the same end but I’ve been good on this. Zero weight gain , no moobs , but yes lowered but not destroyed libido , and hot flushes which frankly are very bearable even after all this time. A bit of brain fog but I still manage to fly model planes upside down from stood on the ground. Parking is a different matter 😆😆
User
Posted 03 Nov 2023 at 00:40

Thank you all for these thoughtful responses.  I have worked so hard to communicate what I am feeling to him with the hope that might help.  But needless to say it is always such a delicate balance.  He didn't choose to have this happen to him.  No one does.  But we all react differently.  I fear his reaction will be more fear based and less committed and dedicated to the relationship than what you all describe.  You are impressive husbands!

I suppose I just need to stay the course, speak my truth and see where it leads us.  But it still makes me so sad to know that we would have been ok if not for this diagnosis.  And unlike other types of loss, where you can grieve cleanly and someday move on, every day we are together is like losing what we once had all over again.  It is very challenging to say the least.

 

 

User
Posted 16 Nov 2023 at 16:36

I really feel for you, and the anguish you are experiencing. What you have said is true, that you just have to go through with it and keep speaking your truth and asking for what you want.

For me, although not being on HT, the nearly 4 years since prostatectomy have been a lot about allowing myself to receive sexual pleasure and attention. Something deep in my wiring called me to be the initiator and now things have changed. It sounds like it might take your husband even longer to adapt to his new reality.

One thing I know from talking to a lot of men in this situation, is that many of us are actually still quite horny, just don't quite know how to show it to our partners. It sounds silly to say out loud, but somewhere deep inside, there is a voice telling us "you're not a real man if you can't get it up." The fear of being shamed for not having an erection rings in our collective ears regardless of whether our actual partners, like you, are quite open to alternatives.

It is a journey.

User
Posted 16 Nov 2023 at 19:05

Originally Posted by: Online Community Member

 

One thing I know from talking to a lot of men in this situation, is that many of us are actually still quite horny, just don't quite know how to show it to our partners. It sounds silly to say out loud, but somewhere deep inside, there is a voice telling us "you're not a real man if you can't get it up." The fear of being shamed for not having an erection rings in our collective ears regardless of whether our actual partners, like you, are quite open to alternatives.

It is a journey.

Absolutely right  about still being horny despite not being able to get an erection on demand, you also feel a bit guilty and useless initiating a bit of intimacy with my wife - sadly since my surgery my wife has not initiated sex. Therefore,  I don't get to use the pump to practice as I say to myself, what is the point of rehab when there is no use!

User
Posted 16 Nov 2023 at 22:06

Isn’t strange how the different treatments for the same disease affect us so differently. On HT, I can still get a fairly usable erection with the right foreplay, but I just have no desire to use it…really weird! I don’t get frustrated just sad that I don’t have that desire. The thought of being horny again seems so far away😟Still have fun though when I (or my wife I should say) gets me started😊

User
Posted 16 Nov 2023 at 23:25

Originally Posted by: Online Community Member

... feel a bit guilty and useless initiating a bit of intimacy with my wife ...

You are saying what so many men say. Yet what's wrong with seeking intimacy without an erection?? Our support group discussed this issue this morning and many agreed that intimacy is what it is all about, not necessarily penetration, particularly as we all get older.

User
Posted 17 Nov 2023 at 08:17

Originally Posted by: Online Community Member

Yet what's wrong with seeking intimacy without an erection?? 

 

Absolutely.

There's more than one way to skin a cat, but some poor blokes on HT don't  even fancy finding the feline.

If you see what I mean. 🙂

Adrian.

Edited by member 17 Nov 2023 at 12:18  | Reason: Phrasing.

User
Posted 17 Nov 2023 at 08:39
Erections are part of a positive feedback "loop" that ultimately and ideally leads to a successful climax for both parties.

I think they are intrinsic to mutual human arousal and some women cannot entertain sex without the visual and tactile evidence of desire that an erect penis provides.

Having been on the dating scene for a couple of years after my prostatectomy that was certainly my experience. Otherwise passionate experiences rapidly fell apart when the prospect of pumping or injecting were introduced.

Fortunately guys in stable relationships can fix their technique assuming their partner is willing to learn and experiment. Guys who are dating just have to grin and bear it and keep trying until they find someone who is prepared to look beyond the erection!

User
Posted 18 Nov 2023 at 07:43

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

... feel a bit guilty and useless initiating a bit of intimacy with my wife ...

You are saying what so many men say. Yet what's wrong with seeking intimacy without an erection?? Our support group discussed this issue this morning and many agreed that intimacy is what it is all about, not necessarily penetration, particularly as we all get older.

Good question, what is wrong with intimacy without an erection? The main issue is that my good lady lies motionless so a bit unsure whether to carry on or not, so I just leave it, as there is no erection anyway! I think intimacy post PCa is not really understood, as there are far too many variables at play.

User
Posted 18 Nov 2023 at 13:53

Originally Posted by: Online Community Member

Good question, what is wrong with intimacy without an erection? The main issue is that my good lady lies motionless so a bit unsure whether to carry on or not, so I just leave it, as there is no erection anyway! I think intimacy post PCa is not really understood, as there are far too many variables at play.

I agree intimacy is now much more difficult because on the back of your mind you've always got the thought of not having the right tool to finish the job. However, in a previous post, you've said you can get an erection with the pump and that was satisfying for you both. 

Like you, I can't presently get a natural erection, but have about a 70% hit rate with Invicorp. We're both very lucky, many can't get an aided stiffy. I'm not a sex therapist but feel the difficulty with men who rely on aided erections is introducing that into love making. Adding an unnatural procedure, pumping or injections, to what, for decades, you've done naturally takes a lot of adapting to. 

I also think a lot of men have a different view on intimacy to women. I always thought sexual intimacy, was almost the same as foreplay, a lead up to full penetrative sex, but my wife ensures me this isn't the case. 

Edited by member 18 Nov 2023 at 14:34  | Reason: Spelling.and additional text

User
Posted 18 Nov 2023 at 16:40

Originally Posted by: Online Community Member

Like you, I can't presently get a natural erection, but have about a 70% hit rate with Invicorp. We're both very lucky, many can't get an aided stiffy. I'm not a sex therapist but feel the difficulty with men who rely on aided erections is introducing that into love making. Adding an unnatural procedure, pumping or injections, to what, for decades, you've done naturally takes a lot of adapting to. 

I also think a lot of men have a different view on intimacy to women. I always thought sexual intimacy, was almost the same as foreplay, a lead up to full penetrative sex, but my wife ensures me this isn't the case. 

You are absolutely right, adding that extra procedure to sex is the issue, particularly when you perceive it is half hearted and she might just be game just to satisfy you. I am far too sensitive to dash into the bathroom to pump the little man up, when I feel, she is not really bothered.

I suppose, I should be grateful from where I was exactly 1yr ago, nothing worked, injection or pump and I had to resort to a strap-on!

User
Posted 18 Nov 2023 at 17:03

Originally Posted by: Online Community Member

You are absolutely right, adding that extra procedure to sex is the issue, particularly when you perceive it is half hearted and she might just be game just to satisfy you. I am far too sensitive to dash into the bathroom to pump the little man up, when I feel, she is not really bothered.

 I suspect most men of our age were used to initiating sex, it was usually the bloke who made the first move. I know I used to. Now post op you lose your confidence, you can't do what you once did, the spontaneitys gone. You're then hoping that your partner will start the ball rolling, but for years they've not been used to that. 

I'd love my wife to prepare my Invicorp jab and sexily say do you fancy a bit, but I doubt that'll ever happen. 🙂

User
Posted 18 Nov 2023 at 17:11
At least tell her that Adrianus. What's the worst that could happen?
User
Posted 18 Nov 2023 at 17:20

I agree it's never the same after treatment we decided to give it up as sex as it was is over now we have become closer and don't even discuss it any more it's sad but we don't want to mess with pumps or injections takes all the fun away but we are closer than ever 👍

User
Posted 18 Nov 2023 at 17:46

Originally Posted by: Online Community Member

I agree it's never the same after treatment we decided to give it up as sex as it was is over now we have become closer and don't even discuss it any more it's sad but we don't want to mess with pumps or injections takes all the fun away but we are closer than ever 👍

I think that's the way we'll end up Gaz. We still love each other, and as someone once said," Love conquers all."

Tortuga, I apologise for diverting from your conversation, but at least the unintended sidetracking gives you an idea of how some blokes feel.

Late edit

I've just googled. It was Virgil  who first said  "Omina Vincent Amor" Loves conquers all. That surprised me, I thought he was the pilot Thunderbird 2. 🫤

Adrian

Edited by member 18 Nov 2023 at 18:15  | Reason: Not specified

User
Posted 18 Nov 2023 at 17:53

It's sad but it's one off the trade offs with treatment it does finish sex as we knew it 

User
Posted 18 Nov 2023 at 20:07

Originally Posted by: Online Community Member

I suspect most men of our age were used to initiating sex, it was usually the bloke who made the first move. I know I used to. Now post op you lose your confidence, you can't do what you once did, the spontaneitys gone. You're then hoping that your partner will start the ball rolling, but for years they've not been used to that. 

I'd love my wife to prepare my Invicorp jab and sexily say do you fancy a bit, but I doubt that'll ever happen. 🙂

You are right about the initiating and the erosion of confidence bit. I also do think that PCa is not the genesis, but only accentuates and amplifies the imbalance or mismatch between the partners. A lot of sufferers will be in their mid 50s to mid 60s, which means that wives who a little younger will be in the throes of menopause and hormonal imbalance. Add this to the mix, intimacy will take a battering! I don't know how old Tortuga is, however she did allude to mismatch between her partner and herself even before his diagnosis for pca. For me it was the other way round, however I am still mourning the loss of my erections which I think is intrinsically connected to my masculinity! 

User
Posted 18 Nov 2023 at 20:30

Originally Posted by: Online Community Member

 I suspect most men of our age were used to initiating sex, it was usually the bloke who made the first move. I know I used to. Now post op you lose your confidence, you can't do what you once did, the spontaneity's gone. You're then hoping that your partner will start the ball rolling, but for years they've not been used to that. 

You are getting to the heart of the change that is needed for us and our partners. We can't do things the way we used to. I reckon often each partner expects the other one to behave the way they used to. But that isn't possible, so we both need to change. Anyone who cares enough to be reading this - I challenge you to make the first move, in a good way, that doesn't presume too much from you partner and gives them room to respond.

Like you said, I can't do what I once did. But I can still love my partner and find new ways to show my love. And ask for what I want - being prepared not to get it.

User
Posted 18 Nov 2023 at 22:58

When you’re on HT and have zero libido I think it’s essential that your partner makes the first move as you just have no desire to.

User
Posted 19 Nov 2023 at 00:27

Originally Posted by: Online Community Member

When you’re on HT and have zero libido I think it’s essential that your partner makes the first move as you just have no desire to.

Yes! Not just the first move, but the second and third as well. If you love your partner and you want intimacy, be prepared to try and try and try again. It is difficult for both partners.

User
Posted 26 Mar 2024 at 14:29

I am the original poster.  Adding an update to this thread:

My husband ultimately started Orgovyx almost two months ago.  As expected, he has no interest in sex and no ability to get an erection or have an orgasm.  I've tried and discovered that being a woman trying to initiate sex with someone who has zero desire for you may be the most humiliating experience of one's life.

But he is doing 'great.' According to him he has no major side effects.  This is whay he reports to his doctors.  ADT is a breeze. He has no interest in sex, but he doesn't care.

I am extremely depressed.  It is even worse knowing that he thinks everything is fine, except for my attitude, for lack of a better word.   I have told him how I am feeling, and he is kind -- will give me a hug -- but I don't feel like I have a real marriage any more.  

As I mentioned initial post, we already had a libido mismatch issue.  This has just changed the difficult to the impossible.

I am 52, attractive, in shape and having a physical relationship is important to me and will be for the forseeable future.  Menopause already happened a didn't change my drive at all.  I am not sure physical intimacy ever was important to him, but it definitely is not now.   He is a nice companion and we have a good friendship.  That is enough for him.  It is not enough for me.

I don't want to blow up my family, and I certainly can't kick my sick husband to the curb, who really isn't doing anything wrong.  But I am miserable, unwanted, lonely and feel like there is no way out of this situation.  My capacity for feeling joy about anything is gone.  And because he is the one with cancer, expressing any of this makes me a monster.

I've been seeing a therapist, but it isn't really helping.  Just not sure where to go from here.  

User
Posted 26 Mar 2024 at 15:04

Wow, what a tricky situation. 

We've got to the stage, by mutual agreement, of sleeping in different rooms. Nothing to do with sex or intimacy, or drifting apart, it's purely the only way, at this time, that we can both manage to get some decent sleep. Hopefully it'll not be a permanent thing.

Our sex life is nothing like it used to be but we're adapting to that. What we have got going for us, is we both have a good sense of humour and somehow often manage to giggle about the situation. As Ricky Gervais once said, "If you can laugh in the face of adversity, you're bullet-proof."

Having said that, there are obviously times, on bad days, when I'm sure we both shed a tear or two.

Your incapacity to enjoy anything in life, maybe due clinical depression. Have you seen a doctor? 

I hope you both find a way of resolving your issues.

Edited by member 26 Mar 2024 at 15:32  | Reason: Additional text.

User
Posted 26 Mar 2024 at 15:29

Oh Tortuga I feel so sorry for you, it must be so difficult. However I know how your husband feels as well…like me, just no interest in sex. Although I’m a lot older than you we had a very active sex life before I started ADT, now nothing. It’s a shame though that your husband won’t try, because I believe there ARE ways of giving each other a lot of pleasure, even though the thought of penetrative sex just doesn’t do anything for me. I’ve lost most of the sensation for that, but other parts of my body are still extremely sensitive and with a little experimentation I can still have VERY intense orgasms. You just need to experiment.

Your husband is lucky if that is the only side effect he is having with ADT. If that was me I would also feel lucky and would happily accept having zero libido.

You say you’ve been to a therapist but it sounds like you need to see someone together, but then again maybe he doesn’t want to? That would be a shame because it might help him come to terms with how YOU are feeling…after all, there are TWO people going through this journey even if only one of them has PCa..

I’m sorry but I can’t really think of anything else other than to wait until the ADT is over and hopefully he gets his libido back. Has he thought about asking if he can come off ADT early? I did because I have had SO many problems, and the Onco is happy for me to come off it after 2 years….I can’t wait! Maybe if his results are stable they might say for the sake of his (or yours maybe) QOL, stopping early might be an option.

Good Luck,

Derek

User
Posted 26 Mar 2024 at 15:40
The way I see this , is that if he had very low sex drive before then the ADT has crippled him. My libido was always sky high and I’ve been on ADT for 3 years. I still want sex a lot , and definitely more than my wife. We don’t bother with erection as it’s not important to her. So I stopped my meds and have offered to use injections but she not interested. So we just find the other obvious ways fairly regularly. I need to be relaxed to orgasm and get fairly erect.

I guess he just not interested which is very hard for you. Feel very sorry for you. No real answer other than he should just try at least …..

User
Posted 26 Mar 2024 at 17:17

I have sent you a private message 

User
Posted 26 Mar 2024 at 17:29

Thank you.  I don't have enough posts to be able to reply privately.  But thank you.

User
Posted 26 Mar 2024 at 18:02

Oh ok 

I didn’t want to reply publicly so all I can say I understand what you are going through 100 percent !

User
Posted 28 Mar 2024 at 17:09

Tortuga - I hear you. I now live with my best friend not husband or lover. I’m in my late 40’s and am so desperate for the intimacy/sex we used to have but it’s just disappeared. I think there’s a tendency to assume women after menopause (which I’ve gone through) sort of turn off to that side but I simply don’t think that’s the case. 

How to cope? I really don’t know. I feel very down sometimes but I think the worse thing is that we can’t change anything. I think you just get used to it. 

User
Posted 29 Mar 2024 at 03:06

Hi Skye 28 - I got diagnosed in my late 40s and one of my biggest fears is that my wife feels exactly like you. I try to take pills and initiate sex, but it just seems to happen so infrequently, about once a month I would say. I do think doctors under play this side of it. It is far and away the worse side effect for me. My advice would be to talk and let your OH know haw you are feeling. Once we do get going, I enjoy it, even though I rarely orgasm. In a funny kind of way it is nice to know and reassuring that my wife is still keen and fancies me (ok, probably sex more than me!). 

User
Posted 29 Mar 2024 at 07:29

Originally Posted by: Online Community Member

I am the original poster.  Adding an update to this thread:

My husband ultimately started Orgovyx almost two months ago.  As expected, he has no interest in sex and no ability to get an erection or have an orgasm.  I've tried and discovered that being a woman trying to initiate sex with someone who has zero desire for you may be the most humiliating experience of one's life.

But he is doing 'great.' According to him he has no major side effects.  This is whay he reports to his doctors.  ADT is a breeze. He has no interest in sex, but he doesn't care.

I am extremely depressed.  It is even worse knowing that he thinks everything is fine, except for my attitude, for lack of a better word.   I have told him how I am feeling, and he is kind -- will give me a hug -- but I don't feel like I have a real marriage any more.  

As I mentioned initial post, we already had a libido mismatch issue.  This has just changed the difficult to the impossible.

I am 52, attractive, in shape and having a physical relationship is important to me and will be for the forseeable future.  Menopause already happened a didn't change my drive at all.  I am not sure physical intimacy ever was important to him, but it definitely is not now.   He is a nice companion and we have a good friendship.  That is enough for him.  It is not enough for me.

I don't want to blow up my family, and I certainly can't kick my sick husband to the curb, who really isn't doing anything wrong.  But I am miserable, unwanted, lonely and feel like there is no way out of this situation.  My capacity for feeling joy about anything is gone.  And because he is the one with cancer, expressing any of this makes me a monster.

I've been seeing a therapist, but it isn't really helping.  Just not sure where to go from here.  

Tortuga, I cannot pretend to understand your predicamrnt and sadness. I cannot even put myself in your partner's shoes, as my challenges are physiological and not due to a chemical castration with the double whammy of being a cancer patient. Prior to my diagnosis, I was a randy goat with a roving eye to boot, and not proud to say how I would have reacted if the situation had been reversed and my wife unable to have sex. Actually, my wife was on the cusp of menopause before my diagnosis, and I vividly recall her fears about this potentially driving a wedge between our relationship and me going out there to help myself. Would I have done this and was this a solution? I really could not answer this question, but deep down I think I know what the answer is. At the end of the day, folks will preach about sacrifice, for better for worse and protecting the sanctity of marriage etc etc. These are all ideals and what we strive for, however we do not live in an ideal world and no one is in your shoes, you have to do what makes you happy, the last thing neither of you want is the love to turn to pity and resentment.

User
Posted 29 Mar 2024 at 11:52

I went through treatment for Gleason 9 prostate cancer and had no interest in sex whilst on hormone therapy now been off hormone therapy for around a year we did try when my erections returned but couldn't ejaculate after the radiotherapy which was a downer for me and having a wife that is much younger than me at 38 I am nearly 63 we decided just to have a platonic relationship which she is ok with as she never had a high sex drive I gave her the chance to move on which she thankfully didn't do but I totally understand if she did go that way don't feel guilty you must do what you need to do it's never easy but we all only live once 

Edited by member 29 Mar 2024 at 11:52  | Reason: Not specified

User
Posted 29 Mar 2024 at 12:26

Originally Posted by: Online Community Member

Once we do get going, I enjoy it, even though I rarely orgasm. In a funny kind of way it is nice to know and reassuring that my wife is still keen and fancies me

Thank you for saying this (and apologies for not quoting your self-put-down at the end) - this way it is an acknowledgement that you can still love and make love with your wife. I am in a similar place to you and I find that there are a myriad of ways that sex with my wife (and also with myself) is completely and absolutely wonderful. Energetically I still ejaculate fountains of love into her even though physically that never includes fluid and seldom includes full-on orgasm. 

User
Posted 29 Mar 2024 at 15:41

Originally Posted by: Online Community Member

 Energetically I still ejaculate fountains of love into her even though physically that never includes fluid and seldom includes full-on orgasm. 

Bloomin' eck I've just had to turn the thermostat down. 😉

 

Edited by member 29 Mar 2024 at 16:24  | Reason: Emoji

User
Posted 29 Mar 2024 at 19:20

Originally Posted by: Online Community Member

Hi Skye 28 - I got diagnosed in my late 40s and one of my biggest fears is that my wife feels exactly like you. I try to take pills and initiate sex, but it just seems to happen so infrequently, about once a month I would say. I do think doctors under play this side of it. It is far and away the worse side effect for me. My advice would be to talk and let your OH know haw you are feeling. Once we do get going, I enjoy it, even though I rarely orgasm. In a funny kind of way it is nice to know and reassuring that my wife is still keen and fancies me (ok, probably sex more than me!). 

That rings so true with me. I’m just NOT interested but once we get going I REALLY enjoy it. Penetrative sex just does nothing for me, but since I bought a male maturabator(Lovehoney) I can have VERY strong orgasms…and I am a lot older than you. I think talking and experimenting is SO important to find something that can satisfy you both…we’ve managed that, and although it’s not the same it is still good.

User
Posted 01 Apr 2024 at 12:35

Thanks. I’ve been advised before to speak to him about it but I’ve made a decision not to discuss with my husband. I feel he’s been through enough already and I know from trying early on that he’s not able to go through the motions. It would really upset him and I love him too much to put that burden on him as well. My advice to Tortuga is that it’s basically a grieving process for both husband and wife on top of everything else going on. As time goes on I am more thankful that his health continues to be very good despite an awful initial diagnoses. Time does heal and we have a brilliant life generally with a lot of laughs and fun times. 

User
Posted 01 Apr 2024 at 12:45

Originally Posted by: Online Community Member

Thanks. I’ve been advised before to speak to him about it but I’ve made a decision not to discuss with my husband. I feel he’s been through enough already and I know from trying early on that he’s not able to go through the motions. It would really upset him and I love him too much to put that burden on him as well. My advice to Tortuga is that it’s basically a grieving process for both husband and wife on top of everything else going on. As time goes on I am more thankful that his health continues to be very good despite an awful initial diagnoses. Time does heal and we have a brilliant life generally with a lot of laughs and fun times. 

Everyone is different so good luck to both of you😊

Derek

User
Posted 01 Apr 2024 at 21:12

Tortuga….It sounds like an awkward situation. I can understand how you feel, but also how your husband feels. Though maybe he should try to be more understanding. I am a similar age to you. 
We have always had the opposite problem. Dh has always had a very high sex drive. I am 15 years younger but have never kept up. If we were the same age I’m not sure we’d be together still as 15 years ago when he was the age I am now he’d have been wanting it twice a day, I’m more a twice a year person now (I am exaggerating!)

 

Back in October he was put on HT for life. It is so strange how different he is. He used to be so bad tempered when he’d been a week without sex. He’s not like that now, so that’s a plus. I’d say his libido is still higher than mine though. He keeps suggesting that I find a younger man for an affair, as long I come home to him at the end of the day, but theres no way I’d ever consider that. I do miss the person he was though. Even though he drove me mad. We can’t even cuddle up in bed anymore, I am hot all night due to peri menopause. He gets lots of hot flushes. So we stay apart. I miss that more than anything.

On the plus side, your dh will come off the HT so maybe things will improve. You could both see a therapist. That should help you both see things from the other persons perspective. 

 

 
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