What does "loss of desire" really mean? - Advanced Prostate...

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What does "loss of desire" really mean?

Lewellen profile image

This is my first post. I'm starting hormone reduction very soon. What does "loss of desire" feel like beyond losing erections? My partner and I are afraid that I'll lose desire for her. What gets lost emotionally? We can cope with loss of erection, but will I not want sex at all? Will she still be beautiful to me? How deep does this loss go emotionally?

I need stories from others who've been there.

60 Replies

Loss of desire for SEX, only. Not loss of desire for emotional attachment or intimacy. If she is beautiful now, she will stay beautiful. You just won't feel like having sex. You can even have erections - it just takes more work.

6357axbz profile image
6357axbz in reply to Tall_Allen

We’ll said TA. Good answer.

Lewellen profile image
Lewellen in reply to Tall_Allen

Thank you! That's so reasuring and a big weight off my heart.

I’m sorry that you are going through this also. Honestly my husband has lost all interest in intimacy and me. Yes I do feel unwanted, but I do understand it’s the meds not him. Luckily we were friends since I was 15 so now our relationship has reversed back to friendship not lovers. Married 36 years since I was 18.

The love of your life will still be your love. Loss of desire is just a lack of getting "horny". Hugs, kisses and love will remain as important as ever and maybe even more so. My wife and I have been without intercourse for over 5 years and love each other as much as we ever have. Life Is Good, especially with a loving partner....

Lewellen profile image
Lewellen in reply to Shooter1

I'm so grateful for that, thank you! This really brightens my future. And yes, I do have a loving partner too!😍 My first love in 22 years since my wife died. I'm back in love and plan on staying that way 🤗

Hi,Everybody is horrified at the thought of loss of libido. In fact though the male on adt usually doesnt actually notice it happening. After a while you realise that although your naked partner still looks wonderful, you just aren't interested in anything further. So it's not that difficult for them but can be very hard for the one that is no longer desired physically. Lacking desire doesnt mean you cant still give pleasure though, it just means you need to make sure you set time aside to deliver some of what your partner needs or you can quickly get to the point where you feel a bit like siblings living together.

I originally had 12mths adt which actually lasts about 2yrs until T starts to recover by the end of that kissing my wife felt like kissing my sister and I found that quite sad. It is easy though to fall in to self pity rather than appreciating what the other partners perspective must be like.

I have now had a couple of years of normality, went through 2nd puberty and we have regained intimacy like we had before.

Unfortunately I am now graded advanced PC so have started adt for life. However this time I at least know how that progresses so I have no excuses for just sliding in to it and ignoring my partner. I have told her to not take no for an answer, state when and what she needs if necessary and I will need to keep focused beyond just myself and keep us a real couple. Will it be successful - I hope so.

Lewellen profile image
Lewellen in reply to NewMan57

Thank you NewMan. You've got onto something that is a specific concern for my partner especially. Her EX treated her with sexual disdain for decades. So we are going to be very deliberate about separating what happened then from what's happening now.

I have appointments with two different therapists who seem (on paper) to know how to help. But of course I can't get in to see them BEFORE the ADT starts!

But now I've got this forum! Whew!! Real answers. 🙂

AlanMeyer profile image
AlanMeyer in reply to NewMan57

Excellent advice NewMan.

I felt zero interest in sex while on Lupron. Like NewMan I also decided that my wife shouldn't suffer because of that and I periodically performed the kind of oral and manual sex she liked. However, to my great surprise, her arousal aroused me too and traditional sex became possible. When it was over I went back to my zero libido state but every time I pushed myself to do the deed I wound up happy that I did it.

Lewellen profile image
Lewellen in reply to AlanMeyer

Now that's encouraging! I should be so lucky 😆👍

AlanMeyer profile image
AlanMeyer in reply to Lewellen

A little bit of luck, a true feeling for your partner, and a certain amount of determination should be all you need. I think you've got them all.

Lulu700 profile image
Lulu700 in reply to AlanMeyer

❤️👏👏👏

Lulu, thanks for your story. That's what I need now, real stories from the front line.

"Sex won't cross your mind". Now that's mind blowing but I can get my head around that!

I'm thinking that once my partner and I figure a few things out, I can picture something like this:

" Honey we haven't had a tumble for a week or two. Would it be a good time to dance the tango tonight?

It'll be about my showing desire that doesn't come from my cock, but it's just as real nonetheless. Cool.

Lulu700 profile image
Lulu700 in reply to Lewellen

Tango tango ! Keep moving baby! I was speaking of how I am .. We can very greatly in our experiences.. one good thing about this for me is that it’s made me more compassionate towards my fellow man and women .. stay strong and heal yourself ! 🙏🏜

Wow. Adversity sucks. But it's a helluva teacher if you want (or need) to listen.

I found that I would have flashes of desire and horniness that were very random and fleeting. Sometimes accompanied with a serviceable erection, also fleeting. So one must live in the moment and not wait when those times arise to take advantage of them. Drop whatever you’re doing and go for it!

Hey, that sounds really interesting and spontaneous. The kind of thing we tried for before PC ! Haha

Could result in interesting situations 🤔😉. I think my partner would find that possiblity exciting :)

You folks are really helping my perspective!!

Your future is bright!Use it or lose it is my motto.

9months into Lupron still having sex multiple times/week.

Here is a poem I wrote about our experience :

.

Lupron vs. Coco- who will prevail?

.

Lupron it promises, to take away my desire,

yet Coco continues, to light up my fire.

.

My body lacks T, no question of that,

Now she starts most encounters,

my libido’s gone flat.

.

To measure my pleasures,

one must know the measures.

To which she gos, to fulfill all my pleasures.

.

She kick starts the action,

and soon I gain traction.

.

She applies some warm lotion,

then starts soft hand motions.

.

Her use of witchcraft, does always amaze.

Back in the saddle, we hump like old days.

.

Even without, the milky wet j'action,

I get such, great satisfaction.

.

You know that I am, a guy who keeps score:

Lupron has zero,

Coco; two hundred and four.

.

* Coco now has 271 - Lupron still zero, but it no longer rhymes 😎

Hahahaha!! You two are amazing! What an inspiration. I think my partner may love the idea of a little Dom in helping things along. Great story. And you're keeping count!!! 😆! Thank you 🙏

After loosing that desire to have sex my life actually started again, so it can be a benefit not looking at a woman with that in mind, at least it was for me.Now finally found the one that will be there to the end sex is not an issue but we do when time permits.

Lewellen profile image
Lewellen in reply to ARIES29

Yes! Thank you! After falling in love again after decades, I'm angry that we don't have the sex my partner and I are used to, but I'm learning that what's still possible has room for being truly satisfying.

I looked for a new love for 20 years, and now that I'm in love again it's a relief to enjoy women more fully from the start; not wondering if I might get a date if I flirt. I love my partner and I love women. Now there's a clearer focus on each, on their own.

I've always thought that the difference between friendship and love is that romantic edge, including sex. And that's still true! But the romance and the sex will be even easier to focus on my partner now. Wow. And female friends can much easier be uncomplicated friends. That's beautiful.

ARIES29 profile image
ARIES29 in reply to Lewellen

Yes & I noticed women become more at ease if their in built radar does not pick up the fact that you want them for sex. The mind can focus on more important things.

Lewellen profile image
Lewellen in reply to ARIES29

Oh, absolutely! It's human to human in a wonderful way. I remember that clearly from my years happily married.

NewMan57 profile image
NewMan57 in reply to Lewellen

Personally I/we have moved on from trying to recover previous levels of functionality and rather look to exceed them within the new enforced physical framework. We still occasionally yearn for a simple easy f**k but in hindsight that ease and simplicity, if you have it, made us lazy.Overall I now dont regret having PCa, it has opened up many new perspectives.

- After being sex obsessed I have now experienced adult life without the overriding influence of testosterone. It does provide an interesting viewpoint of the world around and its obsessions.

- Due to treatment induced ED and shrinkage I have been able to experiment and experience orgasms separated from erections with and without my wife. It is more like what I believe a female orgasm is like and most times is a significantly more satisfying experience. I now believe that the standard combination of erection and ejaculation limits most men to a 2nd rate orgasm experience.

- I have traversed the ADT process and gone from formerly daily intercourse to complete disinterest, to being unmoved by a naked wife, etc. Then with the return of testosterone to experiencing returning desire and lust and finding a new appreciation of her as a wife and partner.

While I acknowledge the devastating and ongoing impact of this disease on both our lives and relationship it hasn't been a complete disaster and it can uncover some positive opportunities for personal growth if you can recognise them.

Thanks

Enjoy your Life

Wow, a lot of good replies here.For me sex always used to be very important in my life. For me loss was too much, it confused my relationship, I lost interest in sex and pretty much anything sexual. I'd say the loss is severe, but some people handle it well.

Lewellen profile image
Lewellen in reply to CSHobie

Handling it well. That's hard.

Almost impossible without guidance from those who've been on the path before us.

And a quantum leap in difficulty for a younger man, or a man with limited positive sexual experience.

How does one redirect ones passions when one doesn't want to? When one isn't finished enjoying the passion that tgey are familiar with and have had all along?

I'm older. 67. And I have had a handful of relationships that included sex. But for only a few years was I deeply in love. And that sex was simple, and remarkably beautiful. But she died young, and I haven't been in love again until recently.

My new love is a wonder after all of these years alone. And we are both suffering the loss of what we have just rediscovered with each other. It's painful.

But because of the love, and a dedication to responding as well as possible to change that comes to us unbidden, we're going to be OK.

Better than ok. I believe we may be on a path to the best sex we've had. But that's sex that is in the service of a deep relationship.

in no little part to all your stories and experiences.

Thanks Hobie. And all of you.

Very similar experience.We both had a good cry when we thought that our sex life was over because of ADT, just as it was really starting to rock.

Next day I told her nothing was going to change. We would continue being intimate 3-4 times a week. What ever form that would take might be out of our control but we would control what we could.

If you lead she will follow and if you are really lucky she will fill in the missing desire with a little seductive witchcraft.

Looking forward to our first Lupron vacation, perhaps a shot of Supra T to relight my pilot light.😎

You're taking a vacation? How long on Lupron before you taking this brake.... and when do you go back to it? All doctor approved??

Still on Lupron , just looking forward to the first vacation, I am committed to at least 18 months of ADT and then will see how I feel. Started Radiation this week, 20 sessions.

MateoBeach profile image
MateoBeach in reply to Lewellen

So wonderful. Thank you for sharing this.

Boy oh boy.............. I really miss that Street Car...... ""S T E L L A A A A""..........

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 06/16/2022 11:22 PM DST

If you are like me you will have a total lack of sex drive. It is testosterone that prompts the drive and without it there will be none. I still have appreciation of beauty and have not lost my feelings of love. It is just the hormone driven sex drive. There are plenty of ways that you can adapt and satisfy your partner. Be creative but it sounds like you are already doing that. Sex is a very complicated phenomenon and desire and all its ramifications exists mostly in your brain. ADT is not much different from testosterone loss with age. You no longer need to deal with being horny all the time and can concentrate on more age appropriate things :) things like caring support etc. If your partner still needs sexual satisfaction, which you can not provide in the way you are accustomed to find other ways. Make it a challenge, a new goal.

Advise:

First, get a big presription of viagra. It’s not expensive. Take it at least 2 or three times a week. If nothing else you will get “morning wood”. But if not, force yourself with your own or the wife’s hands to get an erection. This will serve a couple of purposes. It will keep Atrophy from setting in so if snd when you go on a “drug vacation” and your T returns, you’ll be ready to go. Secondly you may find it possible to get an erection with a little effort and have sex. Your wife will love it cause you can last forever. I am able to have sex with an orgasm about half the time but only about once a month.

Secondly do weight training 3 times a week for an hour minimum. Hire a trainer at least a couple of times to teach you a program. If you work hard you can avoid muscle and bone density loss. Plus you’ll feel better and more energy and confidence for sex.

Schwah

Lewellen profile image
Lewellen in reply to Schwah

Ah, more new info! I don't think I've heard about the atrophy,bones, and muscle mass loss before now. More questions for the doc! Thanks for the advice Schwah

I am on Lupron and Erleada. I still play with Lucy and Roxy, her two “girls”, daily. We laugh and hug. She’s the love of my life. She’s my best friend. I couldn’t get through this without her. In many ways I think this Made us more intimate and more together. If I wanted a Boner I’d pop a blue pill. I don’t.

No one can answer those questions for you. First, make up your mind: boner + cancer or no boner + no cancer? In other words, is sexual desire more important than life? The answer, I hope, is no.

For me it's a loss of the aggression regarding attraction. My girlfriend is still beautiful and desirable to me but we don't hold hands as much or put our head on each other's shoulders, things like that. Less cuddling. (My girlfriend is post-menopause and claims to have no desire either.)

There's still the love, understanding, trust, and everything else that goes into a great relationship, just not the desire to "close the deal". Women are still attractive but, nah, I'm not even thinking about pursuing anything.

For me, it's not that bad.

The only advice I can give you is don’t worry about it. If you love your lady now you will love your lady even more after. Just keep smiling and having fun together, don’t sit around even if you’re feeling crappy just keep going on and have fun😂👍🇺🇸🍷🥃🎣🎼🎤🍻🤪🥰 . Life is good keep enjoying forget about the treatment. The worst part is hot flashes and feeling sore at the injection site for a day or two. If you get a shot in the belly Take two moltrin in before you go and when you get home take a hot shower or two to disperse the heavy serum at least that’s what I do after my Firmagon injection. Good luck to you it is not the end of the world it’s just a new way of looking at it 🙏👍🇺🇸

You've gotten some great perspectives and advice above. My husband and I were 49 years old at his diagnosis of metastatic Gleason 9 PCa. It'll be 5 years this August. At first we were a bit shell shocked and losing intercourse wasn't on our minds. We ended up in an in-person support group with a male nurse moderator and we discussed all things. We did try viagra, trimix etc. He had a reaction to the injection that scared me more than the thought of no intercourse. We have actually found that, besides actually intercourse and his lack of desire for what he normally enjoyed before, we are actually just as loving, physical and tender as we previously had been. I know he still desires me and is passionate but it isn't as tied to actual intercourse. He also let's me know he wants me to be satisfied. I feel just as loved and desired as before and it is actually deeper. Although our physically sexual life was an important part of our relationship we know it goes deeper. And, although still enjoyable, I really just enjoy his love and desire no matter how physical that is. We still love holding hands, kissing, looking at each other, giving each other massages etc. Maybe we will try intercourse again... but it isn't something I mourn. I feel deeply in love and giddy still. Communication is THE most important part. If you have that you'll be fine.

Scout4answers profile image
Scout4answers in reply to pakb

Beautifully written, gives us a helpful insight into a woman's point of view.Thanks for sharing

He is a lucky guy...

Lewellen profile image
Lewellen in reply to pakb

Thank you pakb, I'll make a special point of showing your post to my partner 🙂

pakb profile image
pakb in reply to Lewellen

Just the fact that you are taking the time to think about your partner means the world. You're fortunate to have each other. 💙

It's basically loss of thinking about it. Things that used to create desire no longer do. And over time, erections will occur less and less naturally. Big O's can still occur, but like the ole grey mare, they ain't what they used to be.

My wife and I have had may discussions about this. The key is communication. I know longer want to have se with my wife constantly but she has needs too. When she is in the mood she slips on some lingerie and walks around the house, that signals me that we are having sex that evening. Sometimes she just says it. All about her communicating her needs

Lots of very good answers here. (The poem is perfect!) Agree that the feeling of desire changes considerably but it is still present.

What I learned is that we are all different and respond to ADT very differently. I've been on it for over a year now. The other thing I learned, through the help of a psychologist, is that some of us (5-10%) have an instinctive libido which allows us to get an erection in spite of ADT's effects. It's weird.

Scout4answers profile image
Scout4answers in reply to DSJo

Glad to be in that minority 😎

DSJo profile image
DSJo in reply to Scout4answers

Me Too!

Apologies if you saw my comments below when I posted them earlier this week in reply to another member. In my experience your libido and performance will change, but it does not mean the end of your loving relationship. My wife and I started having sex every day back in Nov 21 - after a year on ADT. We have missed 9 days since due to travel, but we have more than made up for those misses by having sex 2 or 3 times a day several days a week. I'm getting used to walking around with a silly grin on my face. Enjoy your loving partner...

"Prostate cancer can negatively impact your quality of life in many ways, so it is important to hold onto what you can, for as long as you can. It is awesome to read that you and your husband are still close physically and active sexually. Your post addresses a topic that is very near and dear to my heart.

Since my diagnosis (Stage IV with distant mets), I’ve made a commitment to live my life despite the dammed cancer. For example, I’ve lost strength, but I lift weights regularly, walk and bike - and I’m fitter than I’ve been in years. With this mindset my wife and I also did not want to close the book on physical intimacy. Amazingly, since I began treatment we have discovered a fantastic new sex life. Getting there was a bumpy road, but well worth the ups and downs (wink).

As my ability to get an erection diminished, my wife and made a commitment to at least maintain physical closeness. This was critical to both of us. To ensure that we had skin contact, we daily started stripping down and going to bed to snuggle and cuddle. This often turned into sexual play, and I focused on pleasing my wife at least once a day. In return I started to get periodic erections. YAY!

After the first couple of erections I bought a pump and requested a prescription for Viagra. I also started doing kegels. I had mixed success with the pump and Viagra. I found the pump to be cumbersome and hated the tension ring. So, I started using it once a day to maintain blood flow to my penis, but I stopped using the rings. The daily pump use did help with size and firmness.

With the Viagra I had headaches if I took the full dose, but it did work. I eventually settled on taking a low dose (20mg) once a day, and I would often wake up with an erection, or could more easily get one if we started fooling around. My erections were smaller, and did not always last as long as we would have liked, but they allowed for some fun play – and a lot of pleasure.

Side note - I’ve since heard from several guys on this site that they had more success using Cialis as it stays in the system for a longer time.

It took a while, but I finally got a prescription for Trimix, and it is freaking awesome. Because Trimix is injected into the penis, and due to the risk of priapism, my urologist has limited my use to no more than 3 times a week. We mark the days off on a calendar and we both look forward to the next play day. Damn, almost 67 and only 3 erections a week… Even better news, it is also easier for me to get an erection on the in-between days as well.

I don’t orgasm with every erection, but both my wife and I get pleasure from the intercourse, and it always leads to more adventuresome play. The upshot is that we are having more sex than we have since our first year of marriage (way back in 1979). Consequently, we are also closer than we have been for a long time.

Don’t give up, and have some fun!"

having sex 2 or 3 times a day several days a week. I'm getting used to walking around with a silly grin on my face. Enjoy your loving partner...

I have said it before...

Carlos You da Man

I figure i can either lose it due to ADT - or wear it off. Easy choice

When Lust turns to Dust......

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 06/17/2022 1:48 PM DST

This is a very very important issue. I'm sure it is different for every person and their partners. I have to say that after 18 months I came to realize, something I had not fully appreciated before, the absolute primary importance of sex to life and to love and intimacy. I only wished I had known it before. It was a revelation and changed my life.

I assume that sexual arousal (of sorts) returned after the effects of radiation healed. I before that I had no interest. As time went on it slowly returned. I now realize that you have to take daily viagra and perhaps use a pump to ensure proper blood flow so that when the time hopefully comes, you will be ready, something I did not do. I regret this. Also, you have to realize the importance of taking your time. You have to learn how to be intimate which is a skill many men may not have learned in the first place. What used to take only a short time may take a couple of hours. I think over time you will realize that you can carry around the feeling of love and intimacy all the time. This is what I fortunately learned in a most unfortunate way.

Lewellen profile image
Lewellen in reply to ADTMan

ADTMan,Learning to be intimate; amen to that.

I got lucky If I can call it that. Intimacy comes easy to me in some ways. But that's a part of why it took over 20 years for me to fall in love again. In dating, it was hard to find someone who matched me closely enough to feel that we had a chance at long term love. I'd had that with my late wife, but only for 7 years before she died when I was 44.

But this year I've fallen in love (mutually!!) again. Then this hit. And she's completely dedicated to going through this as my partner. It's hard and sad, but it's not a deal breaker in the least.

But what's all that got to do with the question at hand??

It's what so many of you have pointed out. That sex, desire, and love, are all separate parts of the whole that is a loving relationship. And sometimes, one or more of those three things CAN pick up the slack in the absence of one of the other two.

And the key to it is intimacy. Which is less definable, but we know it when it's there, and we know it when it's not.

I don't know guys, take this all with a grain of salt if it sounds too... IDK, too much? Either way, thanks for giving me so much varied and VERY needed info and support.

After you are on the ADT juice for a while, seeing a naked woman will be similar to looking at a tree trunk in the woods. Interesting.......I wonder what kind of tree that is?.......... but not sexually arousing anymore. 😁

Learn to live with a difference in your sex life, become one of the NUN's. In your late 60's what is the big deal anyway? Without the sex drive, I find life to be much better. IMO, my life was driven by the sex drive, it overrode my best intentions. I hate the person I was. I love my children, and my exes. Which wouldn't be so many if I could just have taken lupron sooner...lol

Hello. I understand your concern. I had RD 12 months ago. They preserved one nerve bundle which gives me hope that I’ll regain erection ability. But I did lose desire. I think it’s due to the no erection issue. I’m taking a daily cialis for rehab , but still minimal success. But here’s the good news that I wanted to share. A month ago I got a penis pump on my urologist recommendation. It immediately worked. Unbelievable! Already I can feel some desire returning as now I know I can get and hold an erection . Good luck to you and remember there’s options .

Lewellen profile image
Lewellen in reply to Dan-A

Thanks for that. In recent months before any treatment, I've had trouble holding an erection but had some luck with the blue pills and a cock ring. So I'm familiar with the idea of the confidence boost from staying hard. If it takes a pump sometime in the future I'll be more willing to try it now👍.

Balls will shrink, need daily viagra to keep dick from atrophy...can still get emotions but not fully firm, just able to jam her in...ororgamis are tough to get vaginally, and for me, not drop of cum comes out. No desire to screw, but do it anyway to keep it working... you'll still like hugs, and snuggles...I remember to ask if she needs more, like oral... you wont have any desire, but do that for her at least. Maybe you'll be able to take a hormone therapy vacation someday, hang in thete.

You wont want sex

Mentioned above but I want to reiterate that you likely won't ejaculate any fluid. I can sometimes have an orgasm, but it's much less intense than before. I still really enjoy it when my wife has a good come. I'm 10 months on ADT and we're still figuring things out. Communication is the key. Your partner may have to learn to be more aggressive about letting you know when she's ready to go.

Look at it this way, if you forgo ADT then you'll be dead sooner and there's no sex when you're dead.

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