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Living without sex

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User
Posted 01 Jun 2017 at 19:36
My husband has advanced pc , diagnosed 3 years ago, on 3 monthly prostap injections, about to go on enzalutamide. He became impotent almost instantly when he started prostap. Doctors told him there was nothing that could be done. He still has desires and has not lost his libido but his body won't respond! His genitals have shrunk and he has no body hair left. I'm 55 he's 66, we had a wonderful sex life before this. To be honest we have never really discussed it, we have some how accepted it with a sense of gratitude that we still have good quality time together. We have lots of cuddles and manage to maintain a sense of intimacy between us. I feel for those of you struggling with this, my personal experience has been that the medical profession do not care a great deal about the impact of this.
User
Posted 06 Jun 2017 at 11:02
Thank you Lyn Eyre , I wonder if I have confused libido with desire, I think maybe libido is a more physical thing. My hub says he still desires me, he has "naughty dreams" he also still cheekily creeps up behind me when I'm bending over to do things. Perhaps this is nothing more than the playfulness and affection we have always shared. I only began thinking we may have accepted our situation too soon after reading this forum, 3 and s half years ago, the urologist who first diagnosed hub suggested we only had 6 months of life left! So the subject of ED was furthest from our thoughts, I think I will leave well alone and focus on the other aspects of our relationship, laughter friendship and just a huge thankfulness at having life and each other. Thanks to everyone who took the time to join in this chat, I wish you all well.
User
Posted 05 Jun 2017 at 11:22

Pretty lady I was saddened by your post but you've had excellent advice from Chri J who could write a book about it, also as he says read Erecting the erection"

IT is at least something that your husband still has his libido, frustrating as that is. There have been partners/wives on here whose other halves don't make the effort because they haven't the interest.

You can have orgasms with a soft penis but it takes some getting used to apparently.

Has your husband ever been prescribed Cialis and advised about exercising the penis to maintain the blood flow.

Lynda, was it Viagra that was or will be prescribed only I thought that was for event use and Cialis is for the blood supply.

Chris B, as Chris J says, it is very early for expectations. Your body is still healing even if your mind is saying "get on with it"

Good luck all of you.

Edited by member 05 Jun 2017 at 11:23  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 05 Jun 2017 at 10:06

Hi pretty lady.
Read my profile if you want by clicking my picture. Also find the " erecting the erection " post using the search bar. It's NOT too late to buy a pump and ring set and have some standard of penetrative sex. It's GREAT he still has libido. If your sex life was wonderful before then sod the embarrassment and get on the Lovehoney website. Some toys , some giggles. Nothing silly about a strap-on when faced with what we're faced with. !!!' Men are normally very visually stimulated and believe me LOADS of fun and pleasure can be had without an erection. I hope you know a man can have a perfectly nice orgasm with a completely soft penis through oral sex or lots of lube etc etc. Wishing you luck ok. Just face it together and if you take the lead a bit you may be surprised where it leads.

PS Christopher don't give up ok. You're only 3 months. I'm fully recovered at 24 months !

User
Posted 05 Jun 2017 at 14:41

Hi

No erection for 12 years. After continually reading of folks here who kept trying and achieving success I started Cialis 20mg - it works -:)

Ray

User
Posted 05 Jun 2017 at 16:55
Thank you Chris J after reading your story your positive nature is infectious! What a journey you have had so far. My husband began with a PSA of 120 in Dec 2013, Gleason 4+3 and 4+4 no surgery possible too late for radiotherapy, 3 monthly prostap inj till 2015 PSA down to 1.5 then steady rise so bicalutamide added to treatment, PSA steady till late 2016 PSA now up to 18 so after bone scans and ct and MRI onc proposing starting enzalutomide, just waiting now for the test date 19 June, we have had a steady journey compared to your roller coaster. Thank you for taking the time to read my post. I will certainly look in to your suggestions, I just have to find a way to approach this, I don't want my hub to feel that sex means more to me than his health, his companionship and all his other wonderful qualities. The emasculation is bad enough as it is, loss of body hair shrinking of your dangly bits and no muscle tone, already must be hard to deal with so I must be sensitive. Thanks once again Chris you have really opened my mind to this. Best wishes
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User
Posted 05 Jun 2017 at 09:19

Hi

Sorry to hear of your situation and that nobody has responded sooner to your message. There have been other raw descriptions on this site of the "unspoken" issue resulting from this disease and its treatments - from both sides. There does appear to be an obvious first thought for everyone on hearing the news, and that is get rid of the cancer. Then slowly you start to consider the possible ramifications of the side effects.

Sex is such an important part of intimacy, and the prospect of 20-30 years without it is a devastating thought. I am nearly 3 months post op and whilst everything else is pretty much as it was pre-op with a >0.1 PSA, the ED has not shown any sign of improvement. my genitals feel like a foreign-body attachment without any feeling or sensation.

I am getting my sildenafil prescription, but it's not having any effect - my libido hasn't decreased. However the referral to the ED clinic is still a couple of months away as there is a backlog in my area. My experience to date would lead to me to agree with you that the issues surrounding sexual dysfunction are way down the priority list. With the backdrop of all the challenges faced by the NHS, you can understand it but at what cost? Does that lead to other health issues such as mental health, which is also woefully under-financed.

Good luck with your journey.

Chris

User
Posted 05 Jun 2017 at 09:58

My OH (55yrs) had robotic surgery last week so we are in the very early stages of recovery, before OH decided on surgery we discussed ED and what help there was. Straight after OH decided that he would have the surgery we where passed to a member of her team who discussed incontinence and said be prepared when the catheter comes out that you will have no control but hopefully that it would not be for long but not to panic as there would be things that could be done and regarding ED we where told that we would not be left in the wilderness and that they would work with this as soon as possible after the healing first step we would get viagra to help maintain the blood supply to the penis, although at the beginning this would not be suitable for sex and any help there after that we would need, fingers crossed that this is the case, it so sad that with a lot of medical situations it is all down to where you live what is available. We are aware that we a very fortunate to have good hospital and team

User
Posted 05 Jun 2017 at 10:06

Hi pretty lady.
Read my profile if you want by clicking my picture. Also find the " erecting the erection " post using the search bar. It's NOT too late to buy a pump and ring set and have some standard of penetrative sex. It's GREAT he still has libido. If your sex life was wonderful before then sod the embarrassment and get on the Lovehoney website. Some toys , some giggles. Nothing silly about a strap-on when faced with what we're faced with. !!!' Men are normally very visually stimulated and believe me LOADS of fun and pleasure can be had without an erection. I hope you know a man can have a perfectly nice orgasm with a completely soft penis through oral sex or lots of lube etc etc. Wishing you luck ok. Just face it together and if you take the lead a bit you may be surprised where it leads.

PS Christopher don't give up ok. You're only 3 months. I'm fully recovered at 24 months !

User
Posted 05 Jun 2017 at 11:22

Pretty lady I was saddened by your post but you've had excellent advice from Chri J who could write a book about it, also as he says read Erecting the erection"

IT is at least something that your husband still has his libido, frustrating as that is. There have been partners/wives on here whose other halves don't make the effort because they haven't the interest.

You can have orgasms with a soft penis but it takes some getting used to apparently.

Has your husband ever been prescribed Cialis and advised about exercising the penis to maintain the blood flow.

Lynda, was it Viagra that was or will be prescribed only I thought that was for event use and Cialis is for the blood supply.

Chris B, as Chris J says, it is very early for expectations. Your body is still healing even if your mind is saying "get on with it"

Good luck all of you.

Edited by member 05 Jun 2017 at 11:23  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 05 Jun 2017 at 12:23

Viagra is what they are talking about, thanks for the heads up will ask about Cialis

Lynda

User
Posted 05 Jun 2017 at 14:41

Hi

No erection for 12 years. After continually reading of folks here who kept trying and achieving success I started Cialis 20mg - it works -:)

Ray

User
Posted 05 Jun 2017 at 16:40
Thank you Lynda, unfortunately my hubby was told viagra would be dangerous for him. I have had some good advice about other ways of recreating a sex life so will have to give them some thought, best wishes to you both.
User
Posted 05 Jun 2017 at 16:55
Thank you Chris J after reading your story your positive nature is infectious! What a journey you have had so far. My husband began with a PSA of 120 in Dec 2013, Gleason 4+3 and 4+4 no surgery possible too late for radiotherapy, 3 monthly prostap inj till 2015 PSA down to 1.5 then steady rise so bicalutamide added to treatment, PSA steady till late 2016 PSA now up to 18 so after bone scans and ct and MRI onc proposing starting enzalutomide, just waiting now for the test date 19 June, we have had a steady journey compared to your roller coaster. Thank you for taking the time to read my post. I will certainly look in to your suggestions, I just have to find a way to approach this, I don't want my hub to feel that sex means more to me than his health, his companionship and all his other wonderful qualities. The emasculation is bad enough as it is, loss of body hair shrinking of your dangly bits and no muscle tone, already must be hard to deal with so I must be sensitive. Thanks once again Chris you have really opened my mind to this. Best wishes
User
Posted 06 Jun 2017 at 07:25

I think ED as a result of advanced PCa diagnosis and long term HT is rather different to ED as a result of radical treatment.

Prettylady, your biggest challenge might be having the conversation after 3 years of neither of you really discussing it. Only you can judge whether he would find it distressing to talk about or whether he might feel under attack. If you don't talk about it, I am wondering how you know that he still has a libido? It is quite unusual.

If you do manage to have a conversation and both feel that you would like to restart sexual relations there are a number of things you could try:
- ask the GP for a referral to the local ED nurse or andrology clinic (if one exists)
- if there isn't such a thing, ask the GP if you can try caverject injections, invicorp or muse pellets. These are not dependent on libido so if they are going to work they work regardless of HT
- viagra and Cialis are unlikely to work in your situation but might be worth a try
- a vacuum pump is a possibility but might be hard to get on the NHS because there is no long term benefit to maintaining penile health when on permanent HT - a different situation to men on intermittent or time limited HT who may get better. But since the other purpose of a pump is to enable penetration with restrictive rings it is worth asking whether the CCG in your area has approved the prescribing of these?

If you haven't already read it, this might be interesting to you?

http://community.prostatecanceruk.org/posts/t9839-One-wife-s-story-of-ED#post119001

Edited by member 06 Jun 2017 at 07:28  | Reason: Not specified

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

User
Posted 06 Jun 2017 at 11:02
Thank you Lyn Eyre , I wonder if I have confused libido with desire, I think maybe libido is a more physical thing. My hub says he still desires me, he has "naughty dreams" he also still cheekily creeps up behind me when I'm bending over to do things. Perhaps this is nothing more than the playfulness and affection we have always shared. I only began thinking we may have accepted our situation too soon after reading this forum, 3 and s half years ago, the urologist who first diagnosed hub suggested we only had 6 months of life left! So the subject of ED was furthest from our thoughts, I think I will leave well alone and focus on the other aspects of our relationship, laughter friendship and just a huge thankfulness at having life and each other. Thanks to everyone who took the time to join in this chat, I wish you all well.
 
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