tamoxifen and non existent libido

Hi Macci! I think it's fantastic that you've put this on the forum - I think there should be a specific area dedicated to it!!

The hardest part about all this is that at least us women can at least open it up to be discussed - our poor menfolk are not usually so good at doing the same.

Maybe this something that your GP can discuss with you or has anyone mentioned a consult with a sex therapist? It's possible that tools can be offered on how to deal with it, not of the drills an hammers variety (but if that gets you going!!!) but maybe teach a new way of you getting a desire back.

But what do I know! I suppose I'm a bit surprised at the response you've received so far, particularly as you mentioned that it's something we know to be so common and addressed in booklets and websites.

Let's see where else this goes. Hope more contribute!

Hi Macci, I though I would put my two sense in here. I have the tamoxifen tablets and am delaying taking them until tomorrow, and I'd say this loss of libido cud be a problem thing for me too. What I know about sex, and its not a whole lot, (and not speaking for the whole population) but I think for women the brain has to be engaged. You have to be in a happy place in yourself to really enjoy sex, and body hang ups etc don't help. I would suggest whatever you can do to trigger the happy place in your brain, a certain fragrance, a new dress, new hair do, a place that makes you happy, could make you more in the mood. And definitely talking about it with the man involved- not easy, but sometimes I think we can expect them to be mind readers, a little direction never hurt anyone, am I right?

Hi macci

Thank you so much for putting this lets be honest fairly crappy side effect out there .its the pits.i am on tamoxifen since June and have struggled to settle with it.i was very depressed before Christmas and was given drugs but I have so far managed without them.but the lack of libido really is cruel I'm 40 and not ready to end that side of my life!!!this is a definate side effect and needs to be treated as such.we have lost enough already in this battle.

Xx

Totally agree ladies.

Don't think it is addressed at all or at any stage. May be Irish Cancer Soc could be persuaded to run Life Post Mastectomy/Post BC diagnosis workshop type thing. Could be run by Counsellor types with medical, sex therapist type input. The medics really only deal with the cancer, "official side effects", the RT, Chemo and Hormone Therapy. Once you are through the official hoops it is off you go now when you are actually in bits. The rest which comes with the diagnosis just gets ignored. No woman is the same coming out of bc as went in. Some changes for the best others definitely not.

For me body confidence post mastectomy will take a long time to recover from - can't quite even contemplate reconstruction at the moment. Being bald with fractured ribs post treatment, early menopause changes to my internal system thanks to chemo and a whole new gambit of symptoms from hormone therapy hardly makes me feel sexy but I am only in my 40s - can't say that I am happy to lose this element of my life too.

Thank you ladies for replying. Sad as I am that other women out there are suffering the same loss of libido which is an essential part of our lives, it helps to know I'm not alone in this.

I have been to my GP several times and brought up this subject, but again all I get is suggestions on lubricants. The DR's just don't seem to get it that lubricants aren't much good when there is zero interest!!
I'd much rather read a book
It is a hard thing to talk about, but I can't bear to have my remaining breast touched any more, which used to be my erogenous zone, it just makes me so sad. I think that having being poked and prodded and squished over the last 2 years has put the remaining breast well and truly out of the 'sexy' place

My husband is a wonderful supportive man and we have talked about this issue and he understands, at least on an intellectual level, that it's not him-it's me! But I feel so sad for him that I have no interest in the intimate side of our life.
I've tried all sorts of things to 'get me in the mood', but from what I've read by removing all the oestrogen from my body it's like trying to start a car when there's no petrol

Aah, rant over... the rest of my life is going ok and I've become much more able to say 'no' to things I don't want to do, but this is something I want to say yes to, just don't have the 'want' .
I used to be 'wanton' Now I'm 'wantonless'

Hi
I am not on tamoxifen but I am also suffering serious loss of libido . I finished all treatments last June and recently have noticed a big improvement in my energy levels but alas no improvement in that department! I do like the term wantonless it describes me perfectly . I am suffering serious low self esteem with body image also hair had not returned and I always had long hair and considered a huge part of my femininity. My long suffering other half tries to be understanding but frustrates him no end. I can get no medical advice other than it will happen. Glad as I am to have my health back I would love other aspects to come back! I understand my life has changed irrevocably due to cancer but a lot of changes have been for the better but this is something I really miss!
Long rant but its good to share.

Xxx

Macci and all- there might be some (tiny) light at the end of the tunnel.

I recognise your problem exactly. I too, on Tamoxifen for a little over a year now, have/had completely lost desire. This, as you say, is the main problem, though there`is a separate issue to do with lubrication, pain, loss of muscle tone, and the psychological issues too, as others are saying. And, like you, I found the doctors can do nothing, and though I insist on bringing it up each time, seem embarrassed. (incidentally, when I posted messages here asking for help a good few months back, I was answered mostly by jokes, which left me feeling even more alone, upset and frustrated, same as when I posted on fertility, sorry-rant over).

Anyway, what I have finally found through sheer determination to save my relationship and my sense of myself after everything else is that I can accept a lot less and make up a new kind of way of having sex, a bit desire-less but full of warmth and intimacy. I find if I ignore the fact that there is no feeling of desire, and still enjoy caresses and closeness and eventually have penetrative sex (with lubrication etc and lots of patience, not easy), and that the more I try, and that the more I relax and accept even very little not-great sex is a good thing, the more things seem to improve. It's like my mind can remember what sex used to be, but my body can't feel it , and I still need intimacy, and though I can't feel the old desire, my mind is beginning to accept this new version and like it. But if I accept the intimacy, closeness, cuddling, and a small amount of awkward intercourse, that ends up being quite nice and I feel good, and my relationship blossoms a little again.

I don't think this is just my own bonkers theory. I know sex therapists advise people that sex is a habit, a pattern, and that they have to do it, even when they don't want to. And taht it gets better that way. I was about to go to a sex therapist, but I think I might be happy(ish) with this current idea. Gosh I hope I'm right, and that things keep improving.

The second thing is that my oncologist did give me a prescription for an oestrogen releasing pessary, but I haven't tried it yet. It is expensive, and I think only to help lubrication and I noticed some unhappy side effects in American message boards (bloating).

There, got a load off my chest, but some of it might help. This is an enormous issue for me. I was astounded to find it happened, and that there was no help at all.

Good luck all !!

-and one more thing, a friend have me the name of a sex therapist who is reputed to be quite good (can't vouch for this yet I am afraid), in Dublin. If anyone want the name/background to the recommendation I can pm them. Though I have no idea how to pm!

xx

Well done girls for bringing this subject up - not on Tamoxifen yet but will be in a while. I think its great we can talk about this online here and its terrible that its brushed aside by doctors a bit like chemo-brain.

Hope macci things get better as you say the desire isnt there its not just a lubrication issue.

Well girls I better go and make the most of the next few months then if this is what I have to look forward to

Great again for bringing up the topic and that we can disuss it

Hello ladies,

Thank you for bringing up this very complex subject. There are lots of us wantonless ladies out there - unfortunately.

I do feel that Ania's point is very true. When we are in a good place is definitely the moment to try to rekindle the flame. Valentine's day is a good excuse for some new perfume, new dress ...

For the dryness problems, it might be worthwhile taking a closer look at our diets and ensuring that we are getting enough of the right oils, like olive oil and walnut oil for good skin tone in general. Walnut oil, or just walnuts themselves if you can't get the oil, have good anti-inflammatory properties and are great for the skin. Fish oils too are good for the skin.

Hoping for a return to wantonness someday

Kath

I was beginning to despair about this lack of libido and dryness. I'm not on tamoxifen but i'm on arimidex as I'm post menopausal.

I've started using a product that my oncology nurse suggested, its called replens and is for the dryness. first time I used it I had blood stained discharge and this panicked me, but TG its quite common with the product and will be ok.

I'm not great at putting down my thoughts but I will definitely be reading this thread to see if there are any more suggestions.