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Lack of sexual desire

User
Posted 01 Apr 2019 at 08:59

In general im dealing mentally with living with prostate cancer but am losing my wife in the mean time as i have no sexual desires at all. losing my wife is worse than the cancer. Any 'kind' suggestions please. 

User
Posted 01 Apr 2019 at 10:46
I am assuming that you are on hormone treatment? Has your wife been involved in your hospital appointments etc? Has she read any leaflets about the side effects of the hormones - lots of wives fear that their husband / partner does not love them anymore, because no-one has explained the side effects properly.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Apr 2019 at 14:34

It is with some trepidation that I attempt to set down my view on things.

I have E.D. and little desire or libido. I am happy to offer what I have or can achieve, my wife is happy with this, after all, penetration is not the only way to achieve satisfaction. You just have to use your imagination and maybe the odd sex toy or two.

Cuddles and kisses are sometimes all that is needed, with luck these may turn into something more.

Now I feel like a "Agony Aunt"  :-)

John 

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23  <0.01

User
Posted 01 Apr 2019 at 16:31

Just one of the many side effects that we all experience 

User
Posted 02 Apr 2019 at 00:16
As a wife of nearly 48 years, I am sorry that you feel you are losing your wife. It is a sad fact that some side effects of the treatments mean that a "normal relationship " vanishes and you both have to adapt to a new way of loving. Friendship is the main part of that love and learning to accept that things aren't the same. We have become closer in many ways but I have been to all the many appointments and scans etc so we have been through the journey as a team and although we miss the intimacy we still have cuddles and kisses and treasure every moment together because we feel lucky to still be together. Perhaps you could write your wife a love letter to tell her how much she and your life together means to you. Laugh together when you can and share activities to keep rhe closeness. Good Luck.
User
Posted 02 Apr 2019 at 08:37

Not really helping Langers there are you DR ? Casual encounters end, well,casually !!

Langers , as you are now seeing this is a question frequently asked , you will find the common thread is that things will be different, but communication is key to surviving this. Not every couple talks about everything, some couples don't need to and that is fine, until this happens then you will need to discuss both your needs and worries with each other. It isn't easy, but if you value your relationship then it will need work.

If you read some of the threads started by the brave and loving women partners on here you will get an insight into their issues and worries. I myself found it invaluable, and i too felt the way you do now at the beginning of my journey.

I wish you all the best and hope you can recover the closeness you feel you may have lost with your wife.

Good luck,

Phil

User
Posted 03 Apr 2019 at 16:34

Have you thought about having relationship counselling or sexual counselling?
Do you have a MacMillan nurse assigned to you? If so, they can probably point you towards some local resources. Your GP might be able to too.
If relevant, you can get yourself referred to an Erectile Dysfunction clinic by your GP or consultant.

As Sparrow said, you are going to need to work harder to compensate for your lack of natural desire.

User
Posted 03 Apr 2019 at 20:55

Originally Posted by: Online Community Member

After 7yrs im afraid its taking its toll. i cant blame her as she is only just 50 (and beautiful..). any suggestions? Is it a physical or mental issie?

 

It is a chemical issue, caused by your hormone treatment. The hormones block production of testosterone which in turn switches off your libido. It was once described on here as 'looking at my beautiful wife's backside and thinking it might as well be a lump of concrete'. Loss of libido can be devastating for a couple; your wife may need reassurance from you that it isn't that you have stopped loving her. Has your wife been given information leaflets to explain the effect of the hormone treatment? If not, perhaps ask her to read this 

https://prostatecanceruk.org/prostate-information/our-publications/publications/living-with-hormone-therapy-a-guide-for-men-with-prostate-cancer 

or this https://prostatecanceruk.org/prostate-information/our-publications/publications/prostate-cancer-and-your-sex-life

This may also be helpful to you https://community.prostatecanceruk.org/posts/t9839-One-wife-s-story-of-ED  

 

Edited by member 03 Apr 2019 at 21:13  | Reason: Not specified

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

User
Posted 04 Apr 2019 at 07:47

Langers, i do understand , but you aren't the only one on here to have a younger wife, mine is 8 years younger and yes, you do worry for them but probably no more than the men with wife's/partners the same age. 

It's not easy but you need to talk over all this with your wife and explain how you feel. You will probably get told off that you could even think that you are losing her. I try to understand how my wife feels and sometimes that alters slightly how i might react but that's normal, you are a couple and your moods and feelings affect both of you. Read the threads on here started by the partners and its very moving but helps us men to understand what they go through.

My wife doesn't like to see too much on TV about cancer but it doesn't bother me , but i turn it off anyway.

You and your wife have turned off the motorway onto a country lane and its a bit bumpy but you might find a beautiful place together that you would never have found otherwise.

I need to sit down after that laughing

Wishing you all the best,

Phil

User
Posted 05 Apr 2019 at 19:22

Sorry your a little snappy. Ive come to this group for advise. i am not a confident person at the best if times finding it very difficult to discuss my feelings. ive enough to worry about without being told off. Have a good day.

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User
Posted 01 Apr 2019 at 09:35
Have you talked to your wife about it? There's surely more to your relationship than sex, isn't there?

User
Posted 01 Apr 2019 at 10:46
I am assuming that you are on hormone treatment? Has your wife been involved in your hospital appointments etc? Has she read any leaflets about the side effects of the hormones - lots of wives fear that their husband / partner does not love them anymore, because no-one has explained the side effects properly.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Apr 2019 at 14:34

It is with some trepidation that I attempt to set down my view on things.

I have E.D. and little desire or libido. I am happy to offer what I have or can achieve, my wife is happy with this, after all, penetration is not the only way to achieve satisfaction. You just have to use your imagination and maybe the odd sex toy or two.

Cuddles and kisses are sometimes all that is needed, with luck these may turn into something more.

Now I feel like a "Agony Aunt"  :-)

John 

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23  <0.01

User
Posted 01 Apr 2019 at 16:31

Just one of the many side effects that we all experience 

User
Posted 01 Apr 2019 at 16:55
Perhaps worth noting that, depending what type of HT you're on, lack of libido doesn't necessarily equate to lack of function. I've been on bicalutamide for 8 months now and, although it's completely removed my desire for sex, it's not removed the ability. I can still get erections with manual stimulation. That may not be the case with other types of HT drug.

User
Posted 02 Apr 2019 at 00:16
As a wife of nearly 48 years, I am sorry that you feel you are losing your wife. It is a sad fact that some side effects of the treatments mean that a "normal relationship " vanishes and you both have to adapt to a new way of loving. Friendship is the main part of that love and learning to accept that things aren't the same. We have become closer in many ways but I have been to all the many appointments and scans etc so we have been through the journey as a team and although we miss the intimacy we still have cuddles and kisses and treasure every moment together because we feel lucky to still be together. Perhaps you could write your wife a love letter to tell her how much she and your life together means to you. Laugh together when you can and share activities to keep rhe closeness. Good Luck.
User
Posted 02 Apr 2019 at 08:37

Not really helping Langers there are you DR ? Casual encounters end, well,casually !!

Langers , as you are now seeing this is a question frequently asked , you will find the common thread is that things will be different, but communication is key to surviving this. Not every couple talks about everything, some couples don't need to and that is fine, until this happens then you will need to discuss both your needs and worries with each other. It isn't easy, but if you value your relationship then it will need work.

If you read some of the threads started by the brave and loving women partners on here you will get an insight into their issues and worries. I myself found it invaluable, and i too felt the way you do now at the beginning of my journey.

I wish you all the best and hope you can recover the closeness you feel you may have lost with your wife.

Good luck,

Phil

User
Posted 02 Apr 2019 at 08:51

Good morning 

Yes Phil agreed. 

D.R

User
Posted 03 Apr 2019 at 15:59

After 7yrs im afraid its taking its toll. i cant blame her as she is only just 50 (and beautiful..). any suggestions? Is it a physical or mental issie?

User
Posted 03 Apr 2019 at 16:34

Have you thought about having relationship counselling or sexual counselling?
Do you have a MacMillan nurse assigned to you? If so, they can probably point you towards some local resources. Your GP might be able to too.
If relevant, you can get yourself referred to an Erectile Dysfunction clinic by your GP or consultant.

As Sparrow said, you are going to need to work harder to compensate for your lack of natural desire.

User
Posted 03 Apr 2019 at 20:55

Originally Posted by: Online Community Member

After 7yrs im afraid its taking its toll. i cant blame her as she is only just 50 (and beautiful..). any suggestions? Is it a physical or mental issie?

 

It is a chemical issue, caused by your hormone treatment. The hormones block production of testosterone which in turn switches off your libido. It was once described on here as 'looking at my beautiful wife's backside and thinking it might as well be a lump of concrete'. Loss of libido can be devastating for a couple; your wife may need reassurance from you that it isn't that you have stopped loving her. Has your wife been given information leaflets to explain the effect of the hormone treatment? If not, perhaps ask her to read this 

https://prostatecanceruk.org/prostate-information/our-publications/publications/living-with-hormone-therapy-a-guide-for-men-with-prostate-cancer 

or this https://prostatecanceruk.org/prostate-information/our-publications/publications/prostate-cancer-and-your-sex-life

This may also be helpful to you https://community.prostatecanceruk.org/posts/t9839-One-wife-s-story-of-ED  

 

Edited by member 03 Apr 2019 at 21:13  | Reason: Not specified

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

User
Posted 04 Apr 2019 at 07:47

Langers, i do understand , but you aren't the only one on here to have a younger wife, mine is 8 years younger and yes, you do worry for them but probably no more than the men with wife's/partners the same age. 

It's not easy but you need to talk over all this with your wife and explain how you feel. You will probably get told off that you could even think that you are losing her. I try to understand how my wife feels and sometimes that alters slightly how i might react but that's normal, you are a couple and your moods and feelings affect both of you. Read the threads on here started by the partners and its very moving but helps us men to understand what they go through.

My wife doesn't like to see too much on TV about cancer but it doesn't bother me , but i turn it off anyway.

You and your wife have turned off the motorway onto a country lane and its a bit bumpy but you might find a beautiful place together that you would never have found otherwise.

I need to sit down after that laughing

Wishing you all the best,

Phil

User
Posted 04 Apr 2019 at 10:26

Originally Posted by: Online Community Member

After 7yrs im afraid its taking its toll. i cant blame her as she is only just 50 (and beautiful..). any suggestions? Is it a physical or mental issie?

A number of people in this thread have asked you very reasonable questions, which you've completely ignored. If you come here to ask for help, that's really not a very productive strategy!

Best wishes,

Chris

 

User
Posted 05 Apr 2019 at 19:18

Thank you for this advise. would a Macmillian nurse be able to help? I have not contacted them direct as yet? ill also look at consualing if it wiuld help.

User
Posted 05 Apr 2019 at 19:22

Sorry your a little snappy. Ive come to this group for advise. i am not a confident person at the best if times finding it very difficult to discuss my feelings. ive enough to worry about without being told off. Have a good day.

User
Posted 05 Apr 2019 at 19:33

Originally Posted by: Online Community Member

Thank you for this advise. would a Macmillian nurse be able to help? I have not contacted them direct as yet? ill also look at consualing if it wiuld help.

This isn’t usually the remit of a Macmillan nurse, there should be a specialist ED nurse or andrology clinic in your area (although not all NHS trusts provide this). Ask your GP for a referral, and if you get an appointment take your wife along with you. Our ED nurse was brilliant at supporting us as a couple, it wouldn’t have been so useful if John had gone on his own. 

If there is no ED service in your area then it is usually the GP that is responsible for supporting men with ED and loss of libido due to prostate cancer treatment. 

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

User
Posted 05 Apr 2019 at 21:20

Maybe MacMillan nurses are different in different areas, but mine set themselves up as the "go to" point for everything, and they're really good. They don't do the ED clinic, but they got me the appointment, much faster than my GP would be able to because they know the ED nurse who does it. Likewise, they organised Tamoxifen within 24h of me requesting it by getting a prescription from oncology (who I'd never met at that point). I'm sure they would know exactly what to do if I asked for sexual or relationship counseling.

A couple of weeks after diagnosis, the MacMillan nurse offered a Holistic Needs Assesment (HNA). This is a form (I don't have a copy now) which has a list of perhaps 50 different concerns you might have ranging from sexual function, to body image, to money worries, to losing your job, home, etc. You tick off the ones that are a concern for you, and they go through those and get you the relevant support. My GP also wrote to me at the same time and strongly recommended I do the HNA when it's offered. I didn't tick off many, but I was concerned about future ED, body image, and how to continue being a carer for my parents. As part of going through this, they got me the ED appointment even though I didn't have any ED at that point, but it enabled the ED nurse to go through the issue with me, and they would have prescribed the 5mg Tadalafil if my GP hadn't done so the week before, and they invited me to come back the moment I start having any problems. The MacMillan nurses have been present at my initial consultations, and afterwards check if any of my concerns from the HNA need addressing, for example if some treatment was going to be an issue with caring for my parents.

I have found they are always happy to talk if I pop in anytime (might have to wait as they're often with other patients). They are also the constant as you get passed between urology, oncology, scanning, etc.

If Langers has such a resource available, do go and make use of it. Might be an idea to ask if you can do a HNA if they offer it too.

 
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