Ongoing lack of libido - Erectile dysfunction (ED)

Dear all I have been reading through the forums and have read some of the womens posts who have posted here asking what to expect. Three years down the line I certainly did not expect to be in this position with my husband where he no longer seems to want to be intimate with me on an adult level shall we say. He is now 66 and i am 51. I did venture another conversation with him today and have said to him that he really needs to be more aware of how I feel and he did take that on board. We have worked hard to get through the deep disappointment, sadness and anger that comes with the loss of sex as we knew it. For my husband it has been an enormous loss and he is very angry still about his loss of manhood we have tried to keep our sex life alive even though we both really miss the closeness and enjoyment we both shared with intercourse. His PSA was 29 when diagnosed and he had HT and RT the hormones affected him really badly and changed him physically from having a strong manly body to looking somewhat like me. He had always been a stong and energetic positive personality and I depended on him to get me through my ups and downs especially as I was premenopausal and having many ups and downs in the past 6 years so far. It didnt help either that my sister was diagnosed with breast cancer at the same time and our children were doing their GCSE s and A Levels so we couldnt tell them anything till their exams were over, After RT we worked hard on the pump thing and he took pills. He had erections with the pump, nothing with the pills, but we never really got on with the pump it was to far removed I think from what we had had before. Three years down the line he has had some other health issues which are apparently unrelated to cancer with persistant throat infections which make him feel very ill. Last year he also retired which again has been a big change for him and me. I have felt very depressed, rejected dejected, unattractive and undesirable and without the husband I once had, I have wanted to leave at times and we have discussed getting a third party but I dont really want another man I want my husband back not necessarily as he was just back in a loving way. This has been the hardest thing to ever happen to me. Cancer has destroyed our relationship and we are now negotiating how our relationship is going to be from now on under these circumstances it is a cruel and difficult thing to come to terms with as I now have the decision as to whether I live with this for the rest of our time together ie till death do us part or whether I can tolerate a relationship with the man I love whilst carrying the deep disappointment I feel and the sense of loss. I do accept that we will never be what we were and that we still have many things to enjoy but this is not really what I want. I had no idea this would be the outcome after his treatment nobody told us this and nobody prepared us for this. Im sorry if this sounds negative one thing I would say is that I am still here and so is he we are hanging on and we do love each other so we hope to come to a point of happiness again one day. Where there is hope there is possibility.   

Actually if you read my posts its absolutely not about performance its about intimacy my husband has been suicidal and I have fully supported him and helped him through and he obviously knows that and appreciates fully that what he is going through is not easy for me or for him sometimes you just cant do anymore so the choice is to accept things as they are or find another way to live a happy life I dont have any answers to any of this either I only have my and his experiences which I have shared here with some of you. Its not a question of loyalty or love really its about how much you are prepared to compromise of your own needs and if that makes you miserable what is the point in making each other miserable and adding to each others burden of unhappiness I dont think there is a right or a wrong there is just what works for you as individuals. Theres only so much self sacrifice one can give Im not a saint and am not aiming to be. Its very difficult dealing with the pressure of continuous illness and thats how it is. We will see! Best wishes to you all!

Bad breath that's a bummer Trevor has that unfortunately due to him taking Zometa he can't have most dental procedures so my advice on that is loads of extra strong mints dotted around the house. (that's for me not him) I don't tend to keep the windows open just in case Trevor gets a chill .

ED well to be totally honest we haven't shagged in at at least 3 years , what with the terminal diagnosis and the hormone treatment and a bit like you the cooking , the ironing, cutting grass , putting the bins out , looking after 17 dogs and trying to keep cheerful for our two young children 12 and 16 even though they understand that there dad is going to die we try and stay cheerfull . So to be honest sex is the last thing I think of or worry about.

The relentless appointments are a pain aren't they I attend all of those as well and trying to stay positive as Trevor is told more bad news is hard even worse is facing our children and informing them .

Trevor can also still wash himself and make a cup of tea so like Bob pretty independent , if and when Bob gets so ill that he can't wash and make himself drinks you could just push a straw under the bedroom door that way you wouldn't have to face his breath.

For many years I worked in care homes looking after grumpy old people that I had no emotional attachment to but I treated them with care and respect .

There is an old saying and although I am not religious Do unto others as you would wish done to you.

BFN

Julie

Edited by member 25 Sep 2016 at 08:34  | Reason: Not specified

I'm so tempted to get involved but I won't. I honestly see both sides of the story. I feel for you both truly.
An ongoing happy sex life is achievable without an erection , even though it can be depressing a lot. But in a loving relationship , marriage or whatever , there is always a way. And there are a lot of toy-shops , eg Lovehoney.com. Before you know it you could be having more sex than most of your friends.
But lack of libido , and depression , and loss of self-esteem are very very real things and can destroy a man. The only way to get through this is total open honest discussion , and compromise. Everything in marriage is compromise !!
Hope you get it together x

I am certain my own emotions were running a little high so I am pleased I did not respond with the words I had wanted to yesterday evening.

Reflecting on this overnight, and yes, amongst other things, it did play sufficiently on my mind to prevent me from sleeping much, I can only conclude that you really are struggling to deal with things on your own. You had agreed to separate rooms and giving each other more space so who can judge you for going out or socialising with friends whilst he stays at home. You will do what you feel is right and appropriate for you.

You will not be the first and you certainly won't be the last, sadly, as Fiona has said to discover that you just do not have the fortitude to deal with all this. No good time for that to happen so doing things out of guilt or handling things in the way you are now all on your own with what sounds from your own descriptions, almost with contempt, is probably worse than leaving him in the hands of a supportive and comprehensive care team.

I am not at all surprised you have had some less than supportive messages, your posts are thought provoking and probably bordering on inflamatory to some. This is not a common situation. It is not one that everyone will be able to see the other side of either. I am sure it happens more often than we know of just that very few have the "insert any adjective you feel appropriate here" to come right out and say it. This forum is open to everyone though and that means all posts and the responses to them may not always be to everyone's liking.

I would urge you to continue to fight for Bob's care package and for any help that outside agencies can give. I don't think you have said anything much about any family on here or if there are friends who could provide any company or help for Bob. I do recall you saying you have teenage children at exams stage so presumably 16/18 are they aware of the situation now and how hard it is for both of you? more to the point if they know how are they coping?

As for his ongoing medical issues, which I believe was the original purpose of your post no? In light of his previous issues and as he is probably feeling desperately low and very frightened is there any chance that he is self harming ? Of course viral infections can be horrid and the medications cause unpleasant side effects too including bad breath or black tongue with some anti viral drugs.

I hope Bob gets all the help and support he needs and that you can also stay within a coping srategy that works for you.

atb

Mo

edited slightly having been able to read back further.

also hoping to push the page not found out of the way

Edited by member 24 Sep 2016 at 13:47  | Reason: Not specified

Thanks Francesco no sex isnt everything but having a loving relationship with my husband is so important to me as Im just miserable without it 

There are lots of things he can do for me without full blown sex and he has to do them in my opinion! Many thanks for your prayers and thoughts and for sharing with me it sounds like you worked very hard at one time so now you deserve some relaxation and peace!

Very best wishes to yourself and family.

Hi Bobswife,

Just to say I totally understand your point of view. I grieved the loss of a sex life greatly and also felt like leaving many times, I was also sole carer making all the running as you say. My partner died nearly two years ago and I will never forget, how, for us, cancer took over and robbed us of our future and our relationship and his dignity, it was an awful time and I still am nowhere near forgetting just how sad. It helped me to know there were other women who felt the same and allowed themselves a good rant rather than the constant pressure to stay positive. No easy answers or platitudes here ! Throughout Neil's illness, I somehow found the strength to carry on, not easy but helped enormously by forums like this, it is such a lonely place as a partner. Be kind to yourself, life after a cancer diagnosis changes so much and as human beings it's hard to not be in control. My kindest regards,

Fiona.

Edited by member 15 Aug 2016 at 14:02  | Reason: Not specified

B

Edited by member 27 Aug 2016 at 21:02  | Reason: Not specified

I'm new to this forum but would like any advice as I'm married to a man who was diagnosed and treated about three years ago and has had the all clear. He had hormone tablets and radiotherapy. Following radiotherapy we found that he could still get erections from time to time but the only thing that actually worked was a pump to get a full erection. Three years on my husband has no interest now in sex at all. His penis has shrunk quite a lot and he doesn't really like me touching it as even with stimulation nothing much happens. I'm 15 years younger than him and was extremely upset at our sex life being no longer as it was at the time I have tried to adjust and told him that it's okay we can do lots of other stuff like outer course as opposed to intercourse but still he has not got over his inability to have sex as he would like. He does go to counselling and we have been to counselling together. Unfortunately a recent ongoing vital problem has also laid him quite low. Since being diagnosed with cancer our marriage and my husband have changed completely and we are no longer the same couple. He has now told me he wants time away from home on his own which I'm quite happy for him to have. I unfortunately don't know what to say to him now or how to help him as I feel I have tried everything to support him. I suppose I would like to hear from any other wives who are further down the line with prostate cancer and the overall effects it has had with their sex lives and any men who can help me understand how my husband really feels about all this loss of his erections.

Hello Bobswife and welcome to the site.

You say you are 15 years younger than your husband but I just wondered how old your husband is and whether age is also a factor in his lack of desire.

My husband, for instance, is 75 and although we manage intercourse with Sildenafil, he doesn't have the same libido that he did before PC and I know that he hates the fact that he is unable to make love without the help of a drug.

Anyway, as Lyn says, it can be quiet on here at the weekend but I'm sure you'll get replies later on or in the week so please don't feel that you are being ignored.,

If you go to the search facility at the start of the Online Community section and put in ED it may bring up conversations that you an follow.

Best Wishes

Sandra

********

Bobswife, I hope you feel a little better today.

I don't know how much you communicate with each other and I suspect that currently your husband doesn't want to talk about it all anymore if he is asking for time alone, but communication is the key.

No amount of reassurance from us wives will give back to our men what they see as their "manliness" in the same way that for a lot of wives the ability to produce children is what we are on this earth for.

At 50 I had to have a hysterectomy . I certainly didn't want more children at that age but the mere fact that my "womanliness" had been taken felt dreadful and it took me years to accept it.

What your husband is doing at the moment is mourning his loss and like any loss it will take time for him to accept it. The fact that other issues have arisen is probably making him ask himself "what is the point of it all".

He probably feels that he is letting you down. Every time you approach him and touch him intimately with no reaction is showing him how useless he is.

Others on here have said (and I'm sure many more would agree, including me) that sex isn't the be all and end all of a loving relationship but unless he can get past this mourning period and accept life for what it is then anything we say  is no help is it.

The fact that you have both been to counselling is good, all is not lost for you both because it shows that there is a desire for acceptance.

What is his attitude to being alive instead of the alternative? Does he accept that he had to pay a price or is he saying he wishes he'd just left it as it was?

Do you have children?

Sorry, not being much help here really - pointing out the obvious a lot, but we are all so keen to help each other and feel inadequate when we can't get through to people. Well I do anyway.

Keep talking to us if it helps. Maybe one of us will say something that resonates and that you can pass on to him.

Hope so anyway

*******

Edited by member 08 Aug 2016 at 10:42  | Reason: Not specified

My op was in April, 2 years ago, and tablets have not helped me regain erections. It's no big deal to my OH, mainly because she isn't all that bothered about sex anyway. I wish she were more interested, as I've lost any motivation to progress the lack of erections further. We do have our intimate moments, but they are becoming rarer.

It hasn't helped that in the last 12 months, we have lost my father to PCa, as well as my mother-in law in April, so much of our time is spent dealing with my mother who has no short term memory, and a significant estate, which has been extremely tiring.

Maybe things will improve as we get more relaxed time to ourselves, and I hope things will improve for you.

Paul

Hello Bobswife,

thank you so much for your reply, I appreciate it.

Yes, I'm hoping to begin enjoying full retirement, as around Easter time, I decided to give up work, a part-time job at my brother's petrol station. So I ought to be able to give more attention to my wife - she deserves it!

At the moment, we have 2 young grandchildren running around the house. We have our grandson home for summer, and he insists on sleeping with grandma - so grampa gets stuffed into the spare room!

I forgot to mention in my previous post, that it is perfectly wonderful for a husband and wife to share a shower together; that's a sexy thought right there. Of course I can't at present, with grandkids around!

It was good of you to show this thread to your husband, yes we all have similar problems and must find our own ways to deal with it. My problem is at present I don't get erections, it seems my libido is bone idle! It bothered me in the beginning, but not just now. Just after I was diagnosed, I eventually stopped masturbating, I read in an article somewhere, it mentioned dry orgasms, well I wasn't interested in that, so I quietly gave up.

I have used cialis tablets in the past, so I suppose I could try again. Perhaps I'll try to masturbate once again. But I'm a bit nervous about finding out, it may not be as it was before.

Anyway, life is meant for living, eh?

Frank.

He has also been very angry about his loss of function, and has just refused to discuss it. He has a pump, but hates it with a passion and has only used it twice. He has daily cialis 5mg, which doesn't produce enough of an erection to use, but with a bit of play it will certainly react. He also has viridal, which does work, but he hates it. After a close shave where a and e was almost required, he won't contemplate using it at night. He gets up (no pun intended) at 6.00 to sort the animals (farmer), and we have two kids to get to school. He has lost a fair bit of size, and he hates that too.

I struggle to get him to understand the difference between sex and penetration, but I think that's s bloke thing. Before Pca, we had sex maybe twice a week. Now twice a month is more likely, and that's not penetrative. I think I might have lost my temper about four months ago. I told him he was a selfish ** and that if he wanted to be an old man that was fine, but I didn't. I might have told him there was nothing wrong with his fingers....

Anyway, it helped. Sometimes you just have to shout.

Hello to all
Hoping you are all well. Just to update the situation my husband and have decided to give each other some space and now we have separate rooms we had a massive bust up the other day and he actually revealed some of his feelings regarding MY behaviour which although hurtful was at least a breakthrough. He is though now beginning to be aware of his passive agressive behaviour and how destructive that is. His festering anger which he has had for many years and we believe probably was the cause of his first marriage breakdown is thankfully now being addressed in his counselling sessions. He has told me that he is now going to do all he can to try to change his old habits and be a more thoughtful partner. I of course have my own part to play in this and have told him that I will concentrate less on him and put myself first for a change then hopefully my resentment will be less intense. We have discussed separating but we are going to take things slowly and see what happens. I have told him that I dont trust him to change so he really he needs to regain my trust in him. I hope some of you find the partner side of the story helpful the emotional difficulties have been the most difficult part of all this for us it really does test our relationship. We are continuing to work at it. Best Wishes to you all!

Ditto

the above.

atb to you both Bobswife and bob.

dave

No one has the right to be judgemental towards you. We all do what we can to survive the implications of a partner's illness and developing some detachment is part of coping and keeping yourself sane, it's also perfectly normal. When Neil was so ill, the last thing he wanted was me hanging round him all the time, it made him feel his sense of helplessness more keenly. You are right to ask for medical services to step in, there are some things we simply cant cope with in our own homes.

Fiona. xxx

This hasn't been done by the moderator as that would be clearly noted on the post. The only other person/people who can do this are those that have originated them.

Just pointing this out for those who would be surprised at either the responses so far or wish to make a future comment.

Things are not always what they seem.

Mo

I agree Im a new person to this forum and Im shocked!

I think you are spot on Fiona. It struck me while reading the posts and replies that not so long ago we had another wife whose husband had serious mental health issues which made him aggressive and hard to be with. Generally speaking, we all rushed to offer support, advising her to look after her own needs and not feel obliged. A suicidal partner can take up every ounce of strength and test even the most patient friends and family. Similarly, as wives and partners come to the end game with their men, we are careful to say how important it is that they look after themselves & take time out when they need it - after all, who is going to care for the carer? I don't think that BW is doing any different to a lot of other people but perhaps is a little more blunt on the forum than we are used to or some feel comfortable with.

When my step-father-in-law (not Stan, the other one) was seriously ill my mother-in-law would get really angry that he was laid on the sofa all day when he should be cutting the grass etc. She refused to take time off work so I would go every day to sit with him, and I ended up giving all of his end-of-life care. It wasn't that she was cold or cruel, she loved him to bits but a) was in denial about how seriously ill he was and b) was going to need that job when he died. His view was that she was going to be a young widow and needed to carve out some kind of life without him sooner rather than later. When I was caring for my mum in the final stages, I hardly left her side except to take an hour every evening when the Marie Curie nurse arrived - I went to the gym, ran, cried, ranted and then went back and carried on.

BW, the smell can be truly awful but can happen in all sorts of different illnesses and is simply an indicator that something is wrong. Step-father-in-law had it, my mum had it and so does John sometimes, particularly when his glands are up. It also affects the taste of his food :-( I am not aware of any increased risk of lymphoma or myeloma after PCa (Stan had lymphoma before PCa but there was no suggestion that they were linked) - have they checked that the PCa hasn't spread to the lymphatic system and/or has he had problems with lymphodema since the original treatment?

Edited by member 25 Sep 2016 at 16:36  | Reason: Not specified

Hi Dave hope you are well

In my career and personal life I have seen many people who are caring 24/7 for people they love and also those who work in the care industry who may not have any emotional attachment to they people they care for.

I understand how extremely difficult the caring role can be. In fact at last legislation has also recognised the difficulties carers face. However, I don't wish to get involved in a debate about people's posts on this thread but felt I had to comment on some of what I read, as imo, it had started to become quite

vitriolic which is disappointing.

I also hasten to add that your posts were very supportive as always

Bri

  "   We don't want to start locking threads and issuing warnings to people about their behaviour so please can I ask for everyone to be considerate to each other and respect differing opinions. "

____________________________________________________________________________________________________

You can indeed. Thanks for the timely reminder.  Unfortunately we are only human and sometimes our own situations spill over into a conversation and touch raw spots.

I'm sure we'll all quieten down a bit and do what we do best -  Look out for each other !!

******

Edited by member 27 Sep 2016 at 15:01  | Reason: Not specified

Alan, 

How long did you try the Cialis for?

When I started with Cialis, it gave me severe calf ache and headaches for about 2 - 3 weeks.  The pain would keep me awake and I was taking ibuprofen and the other painkiller. 

After about 2 to 3 weeks, it seemed my body got used to it, the pain stopped, the cialis did its bit.

I had read about the potential benefits of the Cialis so I was prepared to endure the pain and discomfort for, I don't know, a couple of years or so! 

Seriously, if you only gave it a week, it might benefit you to try it again for longer?  My pain was worth it.

dave