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HT a question for the wives

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User
Posted 15 Oct 2023 at 08:57

DH is due to have his first zoladex injection tomorrow. I’m assuming he will be on HT forever or until it no longer works. 

My question is how do you wives cope with what I am assuming will be a sexless marriage and how do the men cope? DH is 15 years older than me but has always had a much higher sex drive than me. If he were the age I am now and I were the same age as him, I don’t think we’d be together as I wouldn’t have been enough for him. Even now, ideally he’d have sex every day, though brachytherapy 9 years ago slowed him down a bit, it’s me that gets fed up, I roll away and pretend I am asleep. If he goes a week without sex, he gets in such a bad mood, snaps at the children and me, sulks in bed etc. it has always been the most difficult part of our relationship, but we do joke about it. A few mornings ago he did the usual, waking up early wanting it, I did my usual rolling away pretending to be asleep, but instead as I faced the other way, I had tears streaming down my face, I couldn’t control them, I never cry and I didn’t let on. But i will miss him being like that so much and never thought it would be something I’d say. I feel like I’m going to be mourning the man he was. I also know if the roles were reversed he wouldn’t stick around as he’s really struggled with my lack of libido since hitting peri menopause. He’s been begging me to get hrt in the hope it will increase my libido. 

I have had zoladex injections myself 24 years ago. I hated it so much that I refused my 6th injection. Mainly due to hot flushes and 2.5 stone weight gain, but I generally felt rough too. Actual menopause symptoms, now I’m that age are worse in some ways, but I know there is an end in sight, so that gets me through, obviously there won’t be an end in sight for dh as far as coming off then goes, I hope he doesn’t suffer like I did as he has no choice but to stay on them. Lack of sex causes his bad moods now…either that will stop happening, which will be a plus, or he will be worse. I am about to find out. 

So I just thought I’d ask how the wives cope. I know we need to just accept it, but I can’t help feeling life will be massively differed. The HT is keeping them alive. DH is fit and well with no symptoms. 

User
Posted 17 Oct 2023 at 19:54

I see where your coming from wiosal it is sad I know but it is one off the horrible things with this desease good luck to all who get less off the side effects and can manage sex as normal but it kills the passion when you have to do this and that too achieve something that's nothing like what you had previously I am lucky I have a partner that doesn't put a big thing on sex and we have a lot in common that keeps up close 

User
Posted 15 Oct 2023 at 11:56

Hello Wiosal,

Obviously I'm not a wife so not really qualified to comment from that angle. I read your post a few times to understand it best I can.

The HT will reduce his libido. That will reduce his desire for sex, but some men will still retain some, while others won't. It will also reduce his ability to get erections and to reach orgasm, but not to zero for all men - about 20% of guys on HT can still get erections, and things like Sildenafil/Viagra, Tadalafil/Cialis, porn, etc can help, but the chances of having successful intercourse are much lower than that (some research suggests 5%, but I'm surprised it's that high).

It's impossible for me to predict how he might react to these changes, and what the extent of the changes will be in his case. It might be that his libido changes to match yours which could reduce the mismatch between you. It might be that the lack of orgasms and the resulting endorphins, possibly not even being able to go off and bang one off by himself, might wind him up more. (Many guys do this, often thinking their partners don't know, which may or may not be the case.)

There are things which might help him and you as a couple in any of these scenarios, and this is where psychosexual conselling could be really useful. Actually, given what you've said, I would have recommended this for the two of you for your current situation anyway, but the HT will change things further between you. You could both learn new things you find enjoyable to do that help you stay close, even when erections or penetrative sex might not be possible. There is usually a long waiting list for this on the NHS, so you could ask for it now, and by the time it comes up, you will have some idea how the HT might be changing things further. You could get a faster appointment if you need it and if it fits in your budget privately, which is typically around £200 per session.

User
Posted 15 Oct 2023 at 18:50

Hi wiosal I know where you are coming from.we had a great sex life until the wretched diagnosis things are just not the same now .so we decided to forget about the sex no fun in having to do this and that to achieve something that's a million miles away from the spontaneous sex we had before all this happened.its either having sex or not  we have our memories and seem to be closer these days ๐Ÿ‘ gaz

Edited by member 15 Oct 2023 at 18:51  | Reason: Mistake

User
Posted 15 Oct 2023 at 19:35

It is sad we miss the old times but you still have each other I had 37 fraction's off radiotherapy and hormone therapy for 18 months for Gleason 9 psa been 0.01 for nearly 2 years so see how we go I hope your treatment goes well and you get used to the new normal at least we are here and battling good luck to you both gaz ๐Ÿ‘

User
Posted 17 Oct 2023 at 11:46

I am 10yrs older than my wife, if anything this condition has been a very humbling experience. I am one those blokes who used to think with their d!cks and would not hang about in a sexless marriage and if I did I would be pretty unhappy! However, getting this condition has humbled me and shown me there is more to life than a hard-on. The lack of sex on tap, (due my inability to maintain an erection) has really brought me off from my high horse. My wife incidentally is at the onset of menopause, been bleeding constantly for the past 2.5mths, sex is the farthest thing on our minds at the moment. In a way I feel it is karma that I had my condition first to help me better understand that there is more to life than having sex! I am fairly certain, if I did not go through my experience and with the way my wife cared for me, I would have strayed when she went through this phase!

User
Posted 22 Oct 2023 at 01:53
If you can find old threads from a past member, Alathays, you might feel a bit better. While most men lose their libido very quickly once the injections start, it doesn't happen to everyone and Alathays is a great example of that. He never lost his desire or his ability to have penetrative sex, even in the end stages when he was trialling things like abiraterone / enzalutimide!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Nov 2023 at 21:50

I have 2 threads going at once. But I thought I’d add onto this one as decho asked me to say how dh gets on a month in. Dh has been on zoladex 4 weeks and a few days. He’s tired in the eves. No hot flushes yet. No reduction in libido yet really, not enough for either of us to notice. But definitely a reduction in the size “down below” much to his annoyance. Though there is enough there to be usable. I’m assuming the libido reduction will come eventually, I think he probably had high levels of testosterone, so it might take longer to reduce. I’d like to say if it stays at this level then we’d both be happy. But if it stays at this level then it won’t help the cancer. Dh is having another drug added at next consultation too. 

User
Posted 16 Nov 2023 at 18:37

Thanks for reply Adrian. You sound like you have a lot going on. You are only a year older than dh. He is a retired farmer but always seems to have stuff to do. He was working full time 9 years ago when he was first diagnosed and had the brachy. He worked throughout, just took it easy for a week after the procedure, but farming doesn’t stop. Our youngest was only 5 back then. DH has a bad back but other than that no health problems, apart from obviously the prostate cancer, but had no symptoms and no symptoms when first diagnosed either. We walk the dogs twice a day, I work so he often goes on his own, especially as it is dark in the morns. We need to walk at 7am if I’m walking, which we often do. He walks fast most of the time too, I struggle to keep up sometimes.

I have wondered whether DH is going to get moody on HT. but I think the moods he has often been in before HT have been due to too much testosterone. So I think he may actually be less bad tempered. Only time will tell. 

User
Posted 16 Nov 2023 at 19:24

Thanks. I wish you well too. I said earlier you are only a year older than dh because I clicked on your name. But that was probably your age when you first came on this site. I don’t suppose it changes the age for us. 

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User
Posted 15 Oct 2023 at 11:56

Hello Wiosal,

Obviously I'm not a wife so not really qualified to comment from that angle. I read your post a few times to understand it best I can.

The HT will reduce his libido. That will reduce his desire for sex, but some men will still retain some, while others won't. It will also reduce his ability to get erections and to reach orgasm, but not to zero for all men - about 20% of guys on HT can still get erections, and things like Sildenafil/Viagra, Tadalafil/Cialis, porn, etc can help, but the chances of having successful intercourse are much lower than that (some research suggests 5%, but I'm surprised it's that high).

It's impossible for me to predict how he might react to these changes, and what the extent of the changes will be in his case. It might be that his libido changes to match yours which could reduce the mismatch between you. It might be that the lack of orgasms and the resulting endorphins, possibly not even being able to go off and bang one off by himself, might wind him up more. (Many guys do this, often thinking their partners don't know, which may or may not be the case.)

There are things which might help him and you as a couple in any of these scenarios, and this is where psychosexual conselling could be really useful. Actually, given what you've said, I would have recommended this for the two of you for your current situation anyway, but the HT will change things further between you. You could both learn new things you find enjoyable to do that help you stay close, even when erections or penetrative sex might not be possible. There is usually a long waiting list for this on the NHS, so you could ask for it now, and by the time it comes up, you will have some idea how the HT might be changing things further. You could get a faster appointment if you need it and if it fits in your budget privately, which is typically around £200 per session.

User
Posted 15 Oct 2023 at 12:53

Thanks for your honest reply Andy. We both feel we are on borrowed time at the moment as far as the bedroom department goes. Of course dh thinks the same with his diagnosis too, but while he feels fine and has no symptoms we are trying not to  think that far ahead. It made me laugh when you said about men “banging one off” dh has always had to do that, though quite happily in front of me. Doesn’t bother me at all. When he has no sex drive on HT I wouldn’t do the same. No way I have too many inhibitions!

It is all so much to take in. Dh’s original diagnosis 9 years ago was Gleason 3+3 and apparently only small growth that was contained in the prostate, for which he had brachytherapy, 9 years later after 4 years of rising psa it is now in his lymph nodes high in his tummy. Though it’s cured in his prostate as nothing seen there with psma scan. We thought it would come back in the prostate eventually, we weren’t expecting this diagnosis. I’ve no idea how it got to the nodes with no tumour in the prostate. I’m assuming the original diagnosis had to be wrong and that it had spread and was laying dormant. His psa was 0.01 for 4 years. DH always said he didn’t want a treatment with hormone therapy and wouldn’t even have it if it were suggested. But of course now it is the only choice he is going ahead. I fear he may refuse after a while. With a psa doubling time of just over 3 months he needs the HT. One of dh’s good friends had his prostate removed 3 years ago and his wife has now left him due to him losing the ability to have sex. He has the full desire still though. That wouldn’t bother me so much if the desire was still there because I’m sure there are other things you can do instead. For me the fact dh will lose the desire is what I find hard to deal with. It’s a massive part of him. Of course I will have to have learn to deal with it and I’m sure I will. His life and health is way more important. As I said on another post, dh’s consultant is very laid back. He just said you’ll be around many years yet like your parents were. His dad was 27 years older than dh now. Dh won’t last that long with this diagnosis. The consultant didn’t even tell dh that it is now incurable and I’m fairly sure it’s a stage 4 going by google. DH says I’m wrong and doesn’t think he’s on hormones long. I’m guessing it’s forever. Consultations are on the phone only. So the next one in November I will speak to him too. 

User
Posted 15 Oct 2023 at 13:53

Hi Wiosal,

I can only speak from my own experience and each man is different but it need NOT be the end of your sex life if you learn to adapt. I have zero libido, no drive to have sex at all although when we get started I can get immense pleasure and orgasm…not every time but more often than not with the help of a really good male masturbator. Penetrative sex just does not interest me, I just get nothing from it and neither does my wife at the moment , probably because of me. Instead we make do with sexual outercourse and it works well for both of us. I have found certain sorts of my body have become extremely sensitive to touch and it is the most wonderful feeling. So we both have a lot of fun and pleasure…No! It’s NOT the same but it’s still VERY good๐Ÿ˜Š

So my advice is for both of you to stay positive about this, experiment and then adapt….and have FUN!

all the best,

Derek

User
Posted 15 Oct 2023 at 17:54

HI Wiosal

I know from personal experience that men with high libido have to have a lot of regular sex. After my treatment 12 years ago we had to re-establish our sex life. We openly talked about how we were going to do it. The details of how we did it are not important but dealing with the new normal is probably the same for most couples. In our case, during the rehabilitation process, whilst we were not able to have penetrative sex, we made sure that we gave each other what we needed. Initially we masturbated each other or individually with the help from each other. I suffer from ED and climacturia so it wasn't easy. What helped us get through this was  that neither of us felt abandoned sexually. What I needed most was some reassurance that I will not have to put up with the lack of sex/orgasms and I made sure that my wife was equally reassured. We now live with the new normal which includes penetrative and oral sex or my wife will help me to masturbate if she does not feel like it or vice versa, which is does not happen very often.  One advice I would give to all couples is that no matter what are your circumstances do not under estimate the power of masturbation both mutual or individual with the help of your wife/partner while you re-establish a new normal. You may wish to follow the following link:

https://community.prostatecanceruk.org/posts/t28948-Re-establishing-Sex-Life

Edited by member 15 Oct 2023 at 19:29  | Reason: Not specified

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 15 Oct 2023 at 18:27

Pratap thanks for reply. It looks like you have had surgery and made a great recovery. It’s the fact that HT is probably for life that is getting me down the most. DH will go from someone with a very high sex drive, to possibly no sex drive at all over the next month, is going to take getting used to. If dh had been told hormones for 2 years or surgery that he may get over it would be very different as there is a goal to aim for and a hope. This would happen naturally over time for people without this cruel disease. At the moment DH doesn’t think it will affect him much, or he tells me I’ll have to have an affair. I don’t want an affair, obviously. 

Thanks Derek. You spoke on another of my posts and make it seem not so bad. 

User
Posted 15 Oct 2023 at 18:39

Wiosal,

The strange thing is I that I had a high sex drive and thought I would get frustrated, but in fact the exact opposite! Because I have no libido, I don’t get frustrated, only a bit sad that my life has changed in this way. However if I had surgery and still had a libido but couldn’t do anything with it, I think I would be far more difficult. Of course that doesn’t help you but as Pratap has said there’s still lots of fun to be had and you might find you actually enjoy it MORE! As long as you are willing to experiment๐Ÿ˜Š

I’ll be very interested to hear how you DH feels after a month or two on HT. Keep us posted.

Derek

User
Posted 15 Oct 2023 at 18:50

Hi wiosal I know where you are coming from.we had a great sex life until the wretched diagnosis things are just not the same now .so we decided to forget about the sex no fun in having to do this and that to achieve something that's a million miles away from the spontaneous sex we had before all this happened.its either having sex or not  we have our memories and seem to be closer these days ๐Ÿ‘ gaz

Edited by member 15 Oct 2023 at 18:51  | Reason: Mistake

User
Posted 15 Oct 2023 at 19:15

Thanks for your honest reply gaz. I have only ever had one partner and that is dh. I was a late starter in that department. 28 years later and I feel sad that it will most likely come to an end early. 

User
Posted 15 Oct 2023 at 19:35

It is sad we miss the old times but you still have each other I had 37 fraction's off radiotherapy and hormone therapy for 18 months for Gleason 9 psa been 0.01 for nearly 2 years so see how we go I hope your treatment goes well and you get used to the new normal at least we are here and battling good luck to you both gaz ๐Ÿ‘

User
Posted 15 Oct 2023 at 19:47

Thanks gaz. DH had brachytherapy. He didn’t want radiotherapy as they said he’d need hormones alongside. He has taken 5mg of cialis daily since Brachy. I don’t think he needed it at first but he insisted.

I hope your psa remains low. Dh’s remained at 0.01 for 5 years. It only slowly climbed for the next 3 years. Everyone kept saying it was fine to climb back up. Then it jumped from 2.0 to 2.7 in 3 months and up to 4.9 in the next 3 months. 

User
Posted 15 Oct 2023 at 20:33

Derek I thought I’d make you laugh. Pratap has added a link on here to another thread. On that thread you put a link to a device you recommend that has helped you with your sex life. I tried to open the link but as we have children my wifi hub is blocking it. I have no idea how to unlock our hub ๐Ÿ˜‚

User
Posted 15 Oct 2023 at 21:07

Hi @Wiosal. Oh gosh almost don't want to reply as I've so much to say! Read my bio and it will tell you the most important stuff...about our journey with this...not wanting HT at any cost and ending up with incurable cancer because he didn't have it. So have it!!

Are you being offered SBRT to the lymph nodes in question? We were after a PSMA scan and if we had had HT for a few weeks first we probably would have caught the cancer then. But as he didnt want it and wasnt advised, so now we have ended up on it for life. It wasnt so bad the first 4 months but then we had Enzalutamide added in on top and that was awful. That went on for 2 years and now back to just HT now. We have had penetrative sex twice in the past 2 months with no cialis and no pump!! True it's a bit tiny and floppy but hard enough to use and cause the desired affect! (Size clearly doesnt matter!!) So sex on HT is not impossible in our case but it's rare for him to want it and now sadly I find it hard to want someone who doesnt want me that way particularly...through no fault of his own. Still if he makes an effort enough to get me interested and I make a bit of an effort back...he and I both end up very satisfied! Floppy Willy Orgasms are the way to go as my OH (and Steve76 here) says! 

As for your lack of libido and inhibitions..that's so sad. I envy you having a man who wants you so much!  I've always been far more interested in sex than my husband and was lucky if we had sex once a month for a lot of our marriage (once we went 10 months without it๐Ÿ™ˆ) until ironically about 9 months prior to his diagnosis and surgery, I gave him a talking to and things took off!  Knowing a little while later that our days were numbered sex wise, we were up to almost every day until the operation..well at least 3 times a week...a lot for us. ! I was going to say you should really consider HRT yourself but if you were on Zolodex does that mean you had breast cancer? If so, HRT not an option BUT if not??!!! Its a game changer esp if you get TRT too. (Testosterone...the irony!!)

Main message...let him take the HT for him to have best chance of recovery...and work on your own issues whatever way you can. Important to keep some physical closeness there.  I really miss it๐Ÿ˜ฅ

Also he can choose to think his life is over or he can get on with living it. You too! Best of luck! 

User
Posted 15 Oct 2023 at 22:08

Thanks for your reply Misty. He hasn’t been offered sbrt he was told he can’t have any more radiotherapy. I am assuming that’s because he had brachy. Apparently the cancer is only in lymph nodes behind his belly button, none in his prostate. So it seems silly for there to be no cure when there is no tumour feeding it. 

I wouldn’t say I have a huge lack in libido. Just less than DH. I am happy with once a week, or 2 weeks at a stretch, but he’s more an every day kind of guy. Though he’s slowed the last year or so, but would still be up for it if I were. But 15 years ago when he was my age he was a twice a day person, I’ve never wanted it that often. So it’s always been a bit of a joke between us. I’ve often asked my girlfriends whether my dh is normal as I’ve only been with him. I’ve said I wish he would slow up. So now I can say be careful what you wish for. Yes he’s having the HT no question about not. Apparently some other drug is being added a month later. There won’t be a recovery though…I think it’s a case of HT until it stops working.  

No I haven’t had breast cancer, I had endometriosis. I needed a big op. So the zolodex was to shrink everything up so they could operate. I put on so much weight and generally felt rubbish. The hot flushes were worse on zoladex than they are now for how intense they were, I got much hotter than I do now, but I can have way more a day now. But I can also go weeks without any, whereas they didn’t go away on zolodex. I get night sweats now too, I didn’t get them on zolodex and I certainly didn’t get the brain fog on either. But I probably wasn’t on it long enough as I refused month 6. 

As I said above dh is on cialis. He will continue on it. Though I did read years ago that in a study in Germany, of men who’d had prostate cancer, those on cialis were way more likely to see their cancer return than those not taking it. Something to do with it encouraging testosterone to be produced. So I wasn’t keen on dh taking it. But he did and will continue to do so. 

Sorry to hear your dh is also on HT for life. I will look up your story. I do feel very selfish and feel i am only thinking of myself. But I can’t help feeling dh is going to change so much. I also know how rubbish I felt on zolodex and I can’t imagine having to stay on it indefinitely. I am not even going to think about what happens when HT stops working. We have 3 boys, the youngest is only 14 the next one up is at uni and the oldest has finished uni and is now travelling. We haven’t told the boys as feel there is no need yet. Dh has 2 older children too. We have told them. His daughter had breast cancer a year ago in her early 30’s so we found out she and dh carry the braca2 gene. So I guess we are fighting that too. 

User
Posted 15 Oct 2023 at 22:19

Misty your part about going without for 10 months, if that was dh going without, he would have left me. I know he would. He’s always said “if you don’t get fed at home, go to the cafe” He’s always been so bad tempered after a week without sex. That’s why I said if the roles were reversed I don’t think he’d stick around. Maybe he would. I don’t know, it’s not a fair comparison it’s beyond his control. 

User
Posted 15 Oct 2023 at 22:37

Its crap isn't it! I was only in my 40s and my guy early 50s when he got it. Our youngest was only 11 and the other two were 15 and 18. We had RP and thought we were all good but back in 2.5 years. A few cells must have escaped ...probably what happened to your guy. There doesn't need to be a tumour feeding it. However we are 3 years into HT now and going good. His PSA didnt go up when he stopped the added Enzalutamide so the HT is containing it for now by itself...long may that continue. Regarding your husbands drive...I wouldnt like sex more than 2 or 3 times a week tbh...quality not quantity, but I really didnt like once a month either! However my husband, is wonderful and I love him dearly so you deal with these things! So many more good things and we are 31 years married! I met him aged 19. Lymph node involvement is technically stage 4 I think but nowhere near as bad as in the bones so hopefully the HT will work well. If your OH has very high testosterone that's feeding it...removing it will do the trick. My guys cancer was surviving on very low testosterone so I thought the HT wouldnt be as effective for him but so far so good. Living our best lives and once we got over the shock of it coming back (took me quite a while but Covid lockdown helped ironically) we are really enjoying and appreciating our lives in an intense way we might not be otherwise. It kind of focuses you on what matters!

User
Posted 15 Oct 2023 at 22:58

Misty…first time round our youngest was only 5 when dh was diagnosed. I was 42. Dh was 57 as he’s older than me. It is our wedding anniversary weds. Only 6 years. But we’ve been together since 1995. 

See the consultant didn’t mention stage 4. DH doesn’t believe me that it’s stage 4. Google told me so. 

User
Posted 16 Oct 2023 at 01:25
Wiosal you guys should get a second opinion.

He has a single recurrence outside the area of the original treatment. FFS the lymph nodes could be surgically removed even if further RT is out of the question.

User
Posted 16 Oct 2023 at 01:31
Misty did your OH have salvage RT to the prostate area or just the cancerous nodes treated? Are you sure it's not come back in the prostate bed?
User
Posted 16 Oct 2023 at 07:55

Francij1 DH doesn’t know how many lymph nodes as he didn’t ask. It was a telephone conversation. He just said the brachytherapy has worked as there’s nothing on psma can in that area. However it has spread to the nodes just behind your belly button. He said you can’t have anymore radiotherapy. That was it. I will as though at the next phone conversation. 

 
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