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Feeling selfish

User
Posted 04 Nov 2015 at 07:10
Feeling totally selfish my OH is due his op in January, we have a great sex life and also it is part of our social life too, we're swingers and enjoy sex with others. Sorry if it's too blunt for you but I'm scared this will change. Well I know it will change, hopefully not forever but definitely in the short term. I know my body and I get really frustrated if we don't have sex for a couple of days, I also know that I can turn everything off and I don't want to do that either.

People say oh don't worry it will get back to normal, but very few know how we live and they don't understand the implications of this. I feel angry, sad, frustrated, alone and very selfish.

He says we have friends to help! But it's something we do as a couple and I don't want to if he isn't. Sorry to be blunt but feeling isolated. We normally talk about everything and never hold anything back, but I can't say how I feel. He has to go through this not me and I will be there for him but he doesn't need my poor me on top of everything else. Just wish I could get my head around everything because right now I feel awful x

User
Posted 09 Nov 2015 at 21:22
Hi Andrea

We are 12 months in front of you. My OH was diagnosed on 22.10.14, RRP on 1.12.14. He's 58 (a young 58!)

Our results were similar to yours. So, here's how it is for us.

At 11 months, oh is still using incontinence pads. It is improving slowly. Dry at night since week 8. Gets worse with alcohol (which doesn't stop him drinking!) and filter coffee (which he has stopped).

He has been given a pump and cialis daily. He takes the tablets, but hates the pump. He did use it for exercise for a while post surgery, but it's not been out of the box for a couple of months. He has learned to cope with the cialis side effects. The doctor has prescribed omeprazole for digestive symptoms and he copes.

He had his first semi in June, then went through s stage of stressing about it. We overcame this by going away for a few days, and leaving the pump at home. He's got to the stage now where he can get a 60-70% erection but not good enough for penetration. We have not had penetrative Dec since November last year. But his hands have become measurably more skilled. And, I don't know if anyone's told you, but you don't need an erection to have an orgasm. What you do need is actual physical stimulation to get any sort of reaction. Just looking at a pair of nice tits will no longer do it.

I'm trying to persuade him to have a go with the injections at the next nurse appointment. We'll see.

I think it is unlikely that your husband will be able to continue in his present lifestyle, at least for quite some time. It depends on how understanding and accommodating your fellow swingers are, and how confident your husband is

User
Posted 04 Nov 2015 at 18:40

Andrea4694,

I think you and your husband are going to need a lot of counselling to get through this, to accept the situation and find a way forward. You could try speaking to one of the specialist nurses (0800-074-8383) who might be able to sign-post you further.

Flexi

User
Posted 09 Nov 2015 at 17:33
Thanks Mo, Diesel. x
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User
Posted 04 Nov 2015 at 18:40

Andrea4694,

I think you and your husband are going to need a lot of counselling to get through this, to accept the situation and find a way forward. You could try speaking to one of the specialist nurses (0800-074-8383) who might be able to sign-post you further.

Flexi

User
Posted 04 Nov 2015 at 19:19

Hi Andrea
A very frank and honest post. Yes this is going to be awfully difficult for you without a doubt , especially with your hobby :-))
Many men suffer very long term issues with their erection , and some men never regain function at all. Sex was immensely important to me pre-op also and it is hard adjusting to no erections at all. But sex can still be amazing in other ways which you obviously well know.
I guess the key thing for you two is LOADS of communication about all this so that things don't break down. New rules and new boundaries maybe. There is a good publication in the toolkit about sex with prostate cancer which you can order by phoning the website number , or download from the publications section of the site. I don't think you are being selfish - just very honest. And by looking for help you are on your way to solving the problem and accepting that there will be one. Keep talking.
All the very best for his operation and to you both
Chris

Edited by member 04 Nov 2015 at 19:20  | Reason: Not specified

User
Posted 04 Nov 2015 at 20:01
Hello, I was just wondering whether surgery is your only option? There is less chance of suffering ED with other treatments.. If you feel that strongly perhaps you should consider other options if they are available.

Wishing you all the best.

Edited by member 06 Nov 2015 at 15:45  | Reason: Not specified

User
Posted 04 Nov 2015 at 21:12
Andrea

nobody should judge you for things that you do in your own private life. There are often discussions on here about sex issues and problems. Regrettably it is all part of the disease at some stage or another.

I guess for a woman it is impossible to truly understand how a man feels when he gets ED, all I do know is that recovery from surgery requires a lot of understanding and a truly deep involvement with a partner. If that is just one person or several what difference does it really make as long as you are all consenting adults? Just because that is not everyone's cup of tea is not a reason for you to avoid mentioning it or asking questions about PCa on here.

Fear of failure is sometimes an issue. So honest communication is necessary from the outset.

The percentage of men undergoing nerve sparing surgery these days that have long term ED failure (even with pumping devices, injections or other medication) is reducing all the time. Not so easy for the men with much more advanced cancer who's only choice is taking drugs that mean living with no Libido at all and total ED, or taking no drugs and dying before their normal time.

There is loads of helful advice for anyone with ED issues on this forum, your OH should also get to see an ED clinician fairly soon after surgery and of course you can go along to that meeting too. There is nothing they have not heard or seen before. They do not shock easily if at all!

If he has had all the options explained to him and has decided that surgery is the route he wants then just make sure you support him all the way and take time and patience post his operation to help him recover in every way possible.

best wishes

Mo

User
Posted 04 Nov 2015 at 22:17

First of all I think you need to contact the moderators and ask them for help to change your user name and then perhaps the other kind members here could each edit their post to remove your name - unless of course you have already understood the implications and are using a made-up name.

Realistically, I suspect that surgery will end your swinging days. No ejaculation, probable shrinking of the penis, leaking urine during intercourse or oral sex etc may be manageable in a partnership but you will find plenty of evidence on here that for some men, ED is unbearable or causes huge distress anyway. It certainly is distasteful to some of the wives / partners even if they don't always tell their man. In a swinging environment, I think that some women are unlikely to want to engage in sexual activities with an incontinent. Nor might it be very easy for a man to use a vacuum pump with non-regular partners but on the other hand, if the events tend to involve a lot of sex toys then maybe that wouldn't be such a problem?

What I think might be the biggest issue would be for an impotent man to witness his partner engaging in sexual activity with other men who are fully functioning. For some men, that would probably be their worst nightmare. I also know that there will be men who can at least get off on seeing other people having sex but maybe for the non-regular partners this would be a step too far.

You could broach whether to see an oncologist and talk about brachy or radiotherapy but as both of these options usually involve hormone treatment (often with the associated loss of libido, shrinking penis / testicles, etc) I imagine that swinging would still be very difficult for a while.

Why do you feel you can't discuss it with him? My worry would be to ensure he has a realistic idea of how much your lives might change so perhaps you will need to upset him a bit now in order to avoid greater distress later.

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

User
Posted 08 Nov 2015 at 22:30

Is this a genuine predicament that 4694 presents? Diesel.

User
Posted 08 Nov 2015 at 22:45
Can I ask what do you mean is it genuine? All I can say it is to me and my partner and others who live like us !
User
Posted 08 Nov 2015 at 23:25
You don't appear to have posted any psa, biopsy, MRI, or Gleason results, only that the operation is set for Jan. next year,you seem more concerned with your own sex life, than that of your partners illness, I too had this cancer, and have had a prostatectomy. I do not mean to offend you, it just struck me as odd.

Edited by member 09 Nov 2015 at 06:59  | Reason: Not specified

User
Posted 08 Nov 2015 at 23:51
Thanks for your support !!! and sorry you feel it's odd !! I posted this in the relationship bit but I was obviously wrong to do so. I have posted before with more details didn't think I had to do it every time I posted !
User
Posted 09 Nov 2015 at 07:19

You are not expected to give details each time, they are usually in your profile, when I looked at yours, nothing.if you prefer not to give them that's fine, but it sometimes helps others on here when , for example, you ask questions re. treatment options,and others (us) can more easily relate to your situation.

User
Posted 09 Nov 2015 at 17:15
Andrea

First of all you posted in the right place both times however many of us just read recent conversations which does not differentiate the categories.

Next up

You may not have your partners full diagnosis details if he has not shared them with you. It is important info that you should add into your profile and add to it as you get more. You can check out a profile by clicking on a person's avatar, but only when you are signed in.

And the next...

This is a PCa forum first and foremost so usually the posts are just about all that entails and asking for generic info on that.

If your partner has PCa then you are among those supporting someone with the disease. Some will not understand your personal choices and it is only natural for some to be upset when they read a post by a partner who seems more anxious about their own sex life than the life of their partner. I'm sure you have come across this many times with your "hobby"

I neither condone or condem your activity as I believe what goes on between consenting adults in their own private homes is up to them.

A lot of people on this forum have all sorts of mental and physical issues due to the disease and side effects of treatments. So using your own words you do come across as not just feeling selfish but actually being selfish. However, for some that is just their honest feelings you are probably in that group.

You should also understand, just occasionally, we get a troll who manages to get posting on the forum, people who use the forum for entirely the wrong reasons. In general they get unearthed very quickly.

There are several of us on this forum who straight talk, we tend to look out for each other so if you can't handle some criticism of your feelings or lifestyle as well as taking the genuine advice then read your responses selectively.

I hope my post does not offend you as that's not my intention.

Regards

Mo

Edited for typos

Edited by member 09 Nov 2015 at 17:16  | Reason: Not specified

User
Posted 09 Nov 2015 at 17:33
Thanks Mo, Diesel. x
User
Posted 09 Nov 2015 at 17:42

Not much I can say to that is there really!!

Have updated my profile now.

Edited by member 09 Nov 2015 at 18:15  | Reason: Not specified

User
Posted 09 Nov 2015 at 18:27
Thanks Andrea and welcome to the forum, there are some very knowledgeable people on here who will always listen and try to help, no matter what the problem. My best wishes to both of you, and good luck for the future.Diesel.
User
Posted 09 Nov 2015 at 21:22
Hi Andrea

We are 12 months in front of you. My OH was diagnosed on 22.10.14, RRP on 1.12.14. He's 58 (a young 58!)

Our results were similar to yours. So, here's how it is for us.

At 11 months, oh is still using incontinence pads. It is improving slowly. Dry at night since week 8. Gets worse with alcohol (which doesn't stop him drinking!) and filter coffee (which he has stopped).

He has been given a pump and cialis daily. He takes the tablets, but hates the pump. He did use it for exercise for a while post surgery, but it's not been out of the box for a couple of months. He has learned to cope with the cialis side effects. The doctor has prescribed omeprazole for digestive symptoms and he copes.

He had his first semi in June, then went through s stage of stressing about it. We overcame this by going away for a few days, and leaving the pump at home. He's got to the stage now where he can get a 60-70% erection but not good enough for penetration. We have not had penetrative Dec since November last year. But his hands have become measurably more skilled. And, I don't know if anyone's told you, but you don't need an erection to have an orgasm. What you do need is actual physical stimulation to get any sort of reaction. Just looking at a pair of nice tits will no longer do it.

I'm trying to persuade him to have a go with the injections at the next nurse appointment. We'll see.

I think it is unlikely that your husband will be able to continue in his present lifestyle, at least for quite some time. It depends on how understanding and accommodating your fellow swingers are, and how confident your husband is

User
Posted 09 Nov 2015 at 21:52
Hi Louise

Thankyou for this, I know it could be a long hall for things to improve but we are trying to be positive now. As for our friends we do have a good group who are very supportive and understand so life will go on, slightly differently but it won't stop us, and that's not just me saying it. We spoke at length about it over the weekend and are both on the same page. Next challenge is op in Jan then concentrating on Adam getting better and doing whatever he needs to do that.

User
Posted 10 Nov 2015 at 00:40

Ffs - does anybody get that this is now an open website which is fully Google-able by Joe Public, whether they register as a member or not.

So, anyone who Googles 'swinger' and 'cialis' or 'incontinence' may find this at the top of their search list, and will know that Adam and Andrea are swingers. For your own sakes, I hope that these are either pseudonyms or you don't mind if any family member or work colleague accidentally stumbles across your thread.

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

User
Posted 10 Nov 2015 at 07:54
Thanks Gran, looks like you were up late last night, new grandson? Diesel. xx
 
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