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Coping with diagnosis and loss of sex drive

User
Posted 23 Dec 2016 at 08:56
Feeling really sad and depressed. My partner has been diagnosed in the last few months with locally advanced prostate cAncer. He is on hormone therapy and lost his sex drive and seems to be behaving in a manic way. Ive tried to get him to see a counsellor but he won't. He says he is dying and we just havs to enjoy life. He just disappears a lot of the time tk see different friends,, I don't really see him much. It's like he wants to just loss himself. I don't think he is coping and I don't think I am either. Because he has no sex drive and erection problems he thinks ithat part of our life is over fiorever. Ive told him there are things that might help but he won't listen,. I just feel like I'm losing him.
User
Posted 23 Dec 2016 at 20:19

Hi Gina...

The thing with HT is that it sort of reverses our adolescence, takes us back to our boyhood.  I know that when I have been on HT I start making Airfix kits.  Ships, planes, cars and trains fill the space in my mind that was otherwise full of salacious thoughts. 

Before I developed PCa, I was always ready to make love, any time, any place, any where, my partner never needed to initiate sex, all she needed to do was show willing to my advances.  But once on HT, it never occurs to me to start something I cannot finish, and while I might respond to her advances, to do my duty so to speak, it is not the same.  

The thing with love making is that us chaps can't really fake it can we, so why we might try our hardest, that is seldom hard enough, our lack of vigour and enthusiasm shines through, to some extent all we are doing is reminding ourselves of what we are missing?

You say your partner has locally advanced PCa, what is his prognosis, is he on HT forever, or is it being offered as part of a package of potentially curative treatment?

I think that is important, throughout my time on HT, I had the hope, the dream that my libido might return.  That dream was enough to keep me practising with a vacuum pump and Viagra.  I knew that I wasn't going to achieve anything remarkable, and just saw it as essential maintenance for my wedding tackle, so that when the great day came when I stopped HT I would be able to rise to the occasion.

But had my diagnosis been such that I was on HT until the day I die, that motivation wouldn't have existed.

Are you aware of intermittent HT, there is a school of thought that we last longer if HT is used sparingly, a break allows our bodies to recover.  Your other half might want to consider that?

Then of course there is the latest 'flood and drought' treatment coming along, it is only trials at the moment, but I would love to have a go, a few shots of extra testosterone would hopefully supercharge my libido and my wife might need to be careful about what she wished for?

:)

Dave 

 

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User
Posted 23 Dec 2016 at 10:11

Morning ginagsurveys.

I'm bumping your post in the hope that somebody with the experience you are having will advise you.

It is not unusual for a PC sufferer to start looking on the black side and think his life is over, because, let's face it, for your partner his life is over - as it was before. Nothing can bring back what you had together and that is what he is mourning.

Perhaps every time he looks at you he realises what he has lost and certainly at present, he cannot see how he will ever get it back, so he spends less time with you and more with friends because it allows him a little bit of time where he can forget how his life has changed

It's not caused by a lack of love for you, more a fear of life continuing as it is.

I'm afraid you just have to be patient for a while until he calms down a little.

Whilst he has been on the hormone therapy, has his PSA dropped at all. Is the HT a forerunner to other treatment? ie radiotherapy perhaps once the cancer has shrunk. ?

 

On top of that you yourself are feeling sad and depressed because it isn't just about him is it? You've lost something of value too.   Perhaps you could talk to your GP and get some counselling because you need to be able to cope as well

Anyway, I hope others will be along to help you with their thoughts. Remember, we are here  if you need to let off steam.

Best wishes

Sandra

 

Edited by member 23 Dec 2016 at 10:16  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 23 Dec 2016 at 19:50

I see that there have been no further replies gina and can only assume it's because of the Christmas period when the site gets quieter.

You will get answers eventually, but if you still haven't had one by the end of the holiday period then post your request again as sometimes they disappear.


****

We can't control the winds - but we can adjust our sails
User
Posted 23 Dec 2016 at 20:19

Hi Gina...

The thing with HT is that it sort of reverses our adolescence, takes us back to our boyhood.  I know that when I have been on HT I start making Airfix kits.  Ships, planes, cars and trains fill the space in my mind that was otherwise full of salacious thoughts. 

Before I developed PCa, I was always ready to make love, any time, any place, any where, my partner never needed to initiate sex, all she needed to do was show willing to my advances.  But once on HT, it never occurs to me to start something I cannot finish, and while I might respond to her advances, to do my duty so to speak, it is not the same.  

The thing with love making is that us chaps can't really fake it can we, so why we might try our hardest, that is seldom hard enough, our lack of vigour and enthusiasm shines through, to some extent all we are doing is reminding ourselves of what we are missing?

You say your partner has locally advanced PCa, what is his prognosis, is he on HT forever, or is it being offered as part of a package of potentially curative treatment?

I think that is important, throughout my time on HT, I had the hope, the dream that my libido might return.  That dream was enough to keep me practising with a vacuum pump and Viagra.  I knew that I wasn't going to achieve anything remarkable, and just saw it as essential maintenance for my wedding tackle, so that when the great day came when I stopped HT I would be able to rise to the occasion.

But had my diagnosis been such that I was on HT until the day I die, that motivation wouldn't have existed.

Are you aware of intermittent HT, there is a school of thought that we last longer if HT is used sparingly, a break allows our bodies to recover.  Your other half might want to consider that?

Then of course there is the latest 'flood and drought' treatment coming along, it is only trials at the moment, but I would love to have a go, a few shots of extra testosterone would hopefully supercharge my libido and my wife might need to be careful about what she wished for?

:)

Dave 

 

User
Posted 24 Dec 2016 at 05:21
Thanks dave I really appreciate your honesty on this subject. He doesn't want to try any pump or any Viagra . He just says I shoukd enjoy life and buggers off out all night to dance or to see friends. He actually diesbt want to spend any time with me at all so not sure what to do. At the moment he is on HT until his PSA level has fallen to 0.4. He will tgen undergo external beam radiotherapy as he is fit abd 56. Ou relationship for 22 years has been very up and down. Im just thinking may b this is just the end of the linef for us. I so wanted to support hin and help him through all of this but he is just pushing me away and seems to have found otter friends to talk to.
User
Posted 24 Dec 2016 at 08:22

Hi Gina,

There are a couple of puzzling things in your posts.

You say your man is '...on HT until his PSA level has fallen to 0.4...'  The doctors will want to keep him on HT forever, unless he has opted for intermittent HT.  They don't ordinarily stop giving HT when the PSA reaches a low number.

External Beam RT, is normally given as 'curative treatment', so if he has been offered RT, that suggests that the doctors think that there is a reasonable chance he might survive.

Has he invited you along to accompany him to his consultations?

My own hospital has specialist Oncology/Urology nurses that are always ready to offer advice and counselling about the whole range of side effect issues including relationship issues.

It might be a good idea for you to try and clarify some of these things, there are also PCUK specialist nurses on this site who you can telephone and will be able to offer you better advice than I can.

:)

Dave

User
Posted 24 Dec 2016 at 08:28
He will only be able to have the radiotherapy if his PSA comes down. He will continue to have the hormone treatment for a couple of years after tgat and I think it might stop or as you say if all of this is successful he might have it intermittently. Yes ive been to the consultations, I asked for him to have some counselling but he refused. He was offered medication for his sex drive but refused. He just thinks he is going to die soon.
User
Posted 24 Dec 2016 at 13:38

Hi Gina,

It sounds to me that he isn't going to die of PCa any time soon.

One of the standard 'curative treatment' options, is to go on HT for the first six months following diagnosis, this causes the PCa tumour to shrink a little.

That means that when he then has RT the beams can be focused upon a smaller area, which in turn minimises the side effects caused by radiation damage to surrounding tissues.

Then he has to stay on HT for another year or two, because the radiation doesn't actually kill the cancer cells, it merely prevents them dividing and multiplying, so he needs to stay on the HT for a year or more while the cancer cells die off naturally without being able to replicate themselves.

The doctors often work on the basis of a package of 3 years HT, with the RT in the first year.

If you are technically minded you can read all about it on the Internet, you need to search adjuvant hormone therapy and neo-adjuvant hormone therapy.

I had all of that done to me 2007-2011, and I am still here with a PSA of 0.2, so you need to tell him that there are plenty of reasons to be cheerful.

:)

Dave 

User
Posted 24 Dec 2016 at 13:50
Hi dave im so grateful for your comments. I will tell him. Thank you and merry christmas
User
Posted 27 Dec 2016 at 17:26
Hi Gina

Sorry you find yourself on here. As both Sandra and Dave mentioned, the diagnosis, potential side-effects, mortality, etc can mess with us men. We become particularly sensitive about anything that affects our "masculinity". Having said that, there are two things you will see again and again on this site. One is that life is precious and if you get a chance to keep it, then grab it. The other is that there is often a strong woman behind the man, supporting him through what is a difficult time for both of them - what would we do without them?

Perhaps you can get your OH onto this community to see that there is hope, and he is not alone in what he is thinking.

Best of luck.

Chris

User
Posted 27 Dec 2016 at 19:10
Oh thank you darling means a lot. I think I'm feeling more lost than him at times as he is illusive. Probs doesn't help that he has aspergers x
 
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