I just came back on here for the first time in a couple of years.
After I came off the Tamoxifen for 6 weeks, my Onc decided to put me on Anastrozole (after a hormone screening) instead, in an attempt to reduce some of my side effects. It didn't make a great deal of difference though (to the side effects I mean). But I'm still here and still taking Anastrozole.
The libido problem has not improved, but in Feb 2018 I will be at the crossroads of having to decide whether to continue Anastrozole for a further 5 years. And I absolutely can't wait to knock it on the head. I fully intend to stop when I hit the 5 year mark, and I'm hoping fervently that I may regain some of my old self again. The problem is I don't know of anyone who has finished Anastrozole, to ask them if anything went back to near normal. I am clinging to the hope that I will regain at least a tiny bit of my sex drive and also regain some sensation in the important areas! But just as importantly, I'm hoping some of my other side effects will eventually fade as well. It would be so good to be free of joint pain again, and to be able to get a good nights sleep. These seem like such minor issues. But they take on gargantuan proportions when you live with them day in and day out, and the dangled carrot of freedom from them is uppermost in my mind for a large part of every day. So I can't wait to reach the 5 year point and give my body a chance to be self regulating again.
I realise some people will think I'm crazy not to take the extra 5 years (my husband included), but I feel so strongly about this.
you may wish to explore this tread on the Moving Forward Board - It is a private one, but you can join it.
I know that this thread is a few years old now but I was wondering if any of the people who contributed so bravely here are still around and did they ever find a solution to Tamoxifen and lack of libido.
I know what you mean drdspg, that's what's driving me on with looking for a solution. The idea that my sex life is over at the age of 48 scares me. I don't want to be old before my time, and that's exactly how it feels. I feel like I've aged about 20 years in the last 18 months.So I'm giving this a try, and at least I might get a definitive cause for my problem. Wish me luck - I'm going to need it.
Well , I do hope it goes well. At the moment I feel that I need to find a way of managing with things as they are; I dont have the nerve to stop medication. I have heard that Macmillan do sessions incinjunction with Relate.. Its rather a shame to think I could use up the rest of my 40s feeling like this.
I have to admit that I said that, about stopping Tamoxifen - I said I'd never do it. But I now feel so far removed from the person I was pre dx, that I sometimes wonder whether it was all worth it. Because the idea of never again feeling like a woman leaves me doubting that it was all worth it. It seems like such a trivial thing to get worked up about, but it is so important for me to be able to not only enjoy a physical relationship, but to actually WANT a physical relationship. Because right now, I feel like a eunuch. I feel completely unsexual - but it's not psychological - I'm completely convinced it's chemical. We've continued with the physical side of things, but for me there is little or no pleasure (apart from enjoying the closeness it engenders). So I'm going to stay off Tam for the 4 or 5 weeks it's safe to do so, and I'm hoping against hope that I get some feeling back. Wish me luck
now thats completely different to me, once i get going i'm fine, especially now ive solved the dryness issue. its the covering up of the empty space that used to be breast and the time it takes to even attempt the actions that are problematic for me. last year feb 2011 i had zoladex ( cancer drug ) for endymetriosis, before i was dx with bc. my libido went away then and has never returned, thats how ive had so much practice at making myself do the deed.
it will be interesting to see what happens, let us know. hope it goes well, i wouldnt come off my tamoxifen for all the tea in china.
I had my last Chemo on 4th Jan, and my last of 15 fractions of Radio on 14th Feb this year. I now have a full head of thick curly which is coloured the same as it was pre diagnosis. I had a WLE not MX, so I am quite lob sided, but I don't have any visible disfiguring scars. In a nutshell, I'm as close to being my old self as I'm likely to get. The issue isn't psychological - the sensations are different. And no amount of touching, caressing or 'romance' can get my lower half to 'engage' with the idea of sex. Sorry if that's too graphic.
So now I have stopped taking my Tamoxifen - just for 4 or 5 weeks - at the suggestion of my BCN. To see whether it definitely is the cause. And if it is, I'm hoping they'll find an alternative. I only hope 4 or 5 weeks is long enough to show whether it's the cause, because it took a long time to actually kill my libido. I only hope it comes back within the safe window I have for not taking the Tam.
I'll let you know. X
sometimes its better to just say it how it is i think, but not everyone looks at it that way. i find that those people who dont want to actually hear your real thoughts must be totally unable to help in any way because how could they, when they dont hear the words you say?. so to pussyfoot around with all the nicey bits and 'cuddle up instead' conversations are a waste of time for me, that isnt the problem, the sex is the problem due to the bits that dont work anymore. simple as that. so i need to find a way round it.
anyway, rebel who gets thrown out of groups - if you want to say anything that might be too raw and controversial for this public forum, so we dont get reported for inappropriate content - feel free to pm me. you sound so much like i feel. i'm on a mission, to be me again!!
Sex and relationships have not been coversations that were had with anyone. There is so much fallout after cancer treatment that is bewildering to deal with alone.
I have been trying to explore the area of mindfullness in order to help myself. Im hoping it will prove useful. (Although I was thrown out of a "mindfillness for cancer" group that I was referred to; I was felt to be too '"raw" and had a lot of feelings of anger, fear and sadness.!!!!
yea, thats true. no actual support but thr worst bit for me was that i thought there would be - then all of a sudden nothing! i had so many questions, so many worries, it takes a while just to get your head round it all, never mind having to try and go back to your normal life. well you cant can you, everything changes so much. thats why i now make conscious decisions to do the things i used to do, and i will, i will make things go back to normal life. it is very hard though, sometimes i just fall apart but those times are getting less frequent.
dont know about you but i never had one conversation about sex or real life problems through all my treatment or afterwards. i know its not easy to talk about but i dont think its addressed enough and there must be loads and loads of women thinking the same things that we are drdspg
No, they dont. Although one might argue that it is a small price to pay- but then it isnt because so much of what is lost is to do with femininity. The difficult bit is that you have to face this properly after the main bit of chemo is over and it feels like support staff just vanish. the emotional stuff is left for you to deal with alone and it packs just as big a punch.
i know what you mean, i was exactly the same, still am actually until i do the 'mind thing' and make myself be active. its really hard. i was bald, one boob, ill from treatment, all that stuff that we have all had to deal with, but then one day i sat thinking that i didnt want it to be like this anymore. it is really difficult. i dont go for the 'just cuddle' thing either. they dont tell you this when they hand you the pills do they!
I still can't imagine doing anything yet at 45 I also feel I am too young to have no physical relationship ahead of me. My husband is neither pushy nor turned off in anyway by my surgery, its just that its if someone created a powerful lidibo vacuum cleaner and sucked it all out of me.
same as you all, no libido,no hair and one breast, not the look i was hoping for but what can you do?
i sent for some yesyesyes oil based lubricant after my doc said nothing they could give me was any good for the menopausal symptoms that tamoxifen imitates. so it arrived, it does work, its brilliant, and i got a black belvia type sporty bra that can be half on and half off but you still look like you have 2 boobs, i had easy access clothes on and then i actually focussed on sex, how it was before all this started. result was near normal sex, no worries about the bra coming off, no pain, kept the light very low, it worked. i did have to really put my mind to it, it didnt just happen naturally that i felt 'in the mood', i had to make myself be in the mood.
i'm 49 and my OH is 52, too young to not be intimate anymore.
i expect i will have to do it all again just to get going, i dont imagine that these feelings are going to come back at all - but the alternative for the next ten years is what?
ive been looking at lacy dress things, lingerie etc to make me feel more attractive and i think i might be able to cope this way.
hard going to begin with - it did work though.
christmas is coming too, might get a few extra prezzies for the mission!
I am also on alterable and have no libido what so ever. If anything, I have negative libido- the whole concept seems rather revolting. I don't really want to be a breastless, sexless creature but am short on ideas.
This problem is both psychological and physical. Hormones are very much impacted by treatment. It is a relief to realise that it isn't just me but am still lost as to any possible solutions.
I have been to see my GP and I get the impression she thinks it is probably more psychological than chemical (I disagree). So I've started seeing an accupuncturist, who says she thinks she can help me. So we'll see. I'll keep you posted.
I just wanted to let you know you're most definitely not alone I don't want to go into detail here but I feel the same as you about this, any with all my other SEs, being overshadowed by something, probably some kind of embarassment or guilt complex?? I, too, feel grateful and lucky to be here, I'm also keen to stay on Tamoxifen and am about to find out this month if my 5 years can be extended to 10 as I was dx at 43.
Maybe someone else on here has some advice?
I know just what you mean about baring your soul. I can't yet bring myself to speak to my GP about it because in the great scheme of things it probably won't seem important to anybody else. But if this is it for good, I'm not sure it was worth it.
And I definitely wouldn't mention it to my Onc, because his favourite come back is "...well I don't think that's anything we're doing to you". It doesn't exactly inspire confidence.
My daughter keeps asking me if I've spoken to my GP (who is a lady) yet, and I keep giving her excuses. The bottom line is that I feel I ought to be grateful that I've come through it and I'm still here to tell the tale. But as time goes by instead of coming to terms with my new reality, I'm actually becoming less and less OK with it.
I suppose I will have to bite the bullet and see my GP.
I'll let you know if I have any joy (no pun intended )
Hi Jaybee, I know just how you feel. I see my onc next month and I intend to ask if Femara is any better, less aches and pains too. I am beginning to feel like a freak, hair thinning drastically, loss of libido being the worst part of all this. I don't want to mention the libido bit to any doctor, sick of being poked and prodded and baring my soul to the medical profession! I had to see a consultant in a different hospital between my BC diagnosis and my surgery and he could see from my notes I had been diagnosed with BC and insisted on examining my breast, even though I told him the lump was too small to feel, picked up by a mammogram. My husband was in the waiting room, wish I had asked him to come in with me, you feel so vulnerable in there, it was scary.
Sorry for the rant, things must improve further down the line, we haven't come this far for nothing, chin (or in my case chins) up xxxx
I have looked everywhere on the web but can't find any useful suggestions, other than quitting the Tam, and I'm not brave enough to do that.
I was really hoping that someone on here might know of some herbal supplement or other that could at least help, and that wasn't contra indicated by the Tam.
Like you say, the cure is starting to seem worse than the illness. Me and my hubby have been married 30 years and have always been very physical, but since I started treatment I have no desire whatsoever. And just at a time in our lives when we don't have to worry about monthly cycles etc (due to my hysterectomy 3 months prior to my Cancer diagnosis). It seems like some cruel trick that fate has played. I know we should keep in my mind that we are at least still here, but I am now so far removed from being the person that I was, that I barely recognise myself.
I'll be honest. The only time I've cried through all this was one night about 2 weeks ago. Hubby was fast asleep in bed next to me, and I just started sobbing uncontrollably because I felt like my sexuality had died - I felt like I really was grieving. And I miss that side of myself even more than my long hair and matching boobs.
Sorry this has turned into a sob story, but I am clutching at straws here, hoping someone can help me get some of my former self back.
Hi Jaybee, I have been on Letrozole for about 3 months and I am having exactly the same problems, as well as the aches and pains and hair shedding. Not been brave enough to post anything until I saw yours but I am beginning to feel the cure is worse than the illness, is it worth it to feel so low all the time. We have been married for many years and have always had a good, loving sex life but that has all gone, hope someone has some good suggestions, feeling very low xx
I started taking Tamoxifen in January this year.
I'm experiencing several side effects from the Tam and I wondered whether anyone has any tips for helping to overcome them? The one that bothers me most is the loss of libido. It's like my sexuality has been completely switched off - I feel like I've been desexed. I can still participate, obviously, but I never get any desire to initiate, and I don't experience anything like the same sensations.It's not a psychological problem with the changes to my body, it's a purely chemical negation of any desire.
So if anyone has any tips on how to switch me back on, I'd really appreciate any advice.