I’m not even sure if it my libido I’ve lost because I still want to have sex I just don’t feel anything so there seems little point. This has been a gradual thing, I’ve been on my treatment for 18 months now (TDM-1) and at first things were fine, then I noticed dryness so bought some KY which did the trick but recently I just don’t feel anything at all. My husband is being very patient but I know he feels hurt & rejected. He keeps asking if there was something he could do differently to help, but I don’t think there is. I bought a vibrator which we’ve tried but still nothing.
I feel mortified at the thought of talking to my consultant about this and I’m wondering if there’s any point, will he be able to suggest anything or is this just a typical side effect that we need to accept?
Same prob. here, Nikki! Plus same feeling of reluctance to talk to Onc. I’m on femara which is what seems to have made it a lot worse - as in zilch - no sex drive whatsoever! I feel sorry for OH and for myself as it is a very enjoyable part of grown-up life - of course! Would also welcome tips etc… Thanks for bringing this up,
I don’t have secondaries but I have the libido problems too. My OH has been brilliant about it but I know he misses it as much as I do. I spoke briefly about this to the nurse when I had a smear test last week and she wrote me a prescription for Replens to help with the dryness and advised me to take things slowly as it can often improve over time.
I really just don’t know where to start though. . .
I would like to share same problem I am on zoladex and tamoxifen for one year.I still have periods and probably for this I have not libido problems at the moment.But to keep periods with breast cancer -it is very dangerous to health (my onkologist told something like this). I would like to remove ovaries, but gynekologist a little bit kept off. Have anybody had ovarectomy after which showed up the libido problems? Are you only on medications like tamoxifen and zoladex? My husband(he is a doctor) sed we have to be happy if libido is lost. Because this mean hormons are stoped.But I can’t to accept if will be like this. Cancer recurrence I also can’t to accept. What do you think about?
Well, I was brave and spoke to my onc. he’s going to prescribe Viagra!!! Not sure how I feel about that, may phone BCC helpline & speak to one of their nurses about it. I guess it could help though? Your comments were very reassuring that I’m not the only one, but I’m so sorry you’re all going through it too x
Hi To Zibzab and you all. I had Tamoxifen with Zoladex injections once a month to stop my periods. After about 16 months to this I had my ovaries out and carried on with Tamoxifen. Yes, no hormones but no libido or interest in sex whatsoever as well! My husband is very good about this but I know it is a huge mainly unspoken problem between us. I want the old me back and a normal life again. I find it all very depressing.
I am interested in the comment about Viagra!! Not sure how that will work but would like to hear if anyone else has tried it with good results.
I spoke to my GP re: prescribing Viagra & apparently it’s only used for men! Gggrrrrr Oncologist!
I am now stopping taking Amatryptaline which I think starting that coincided with the loss of libido, I just have to hope the pain in my hip isn’t too bad.
Thanks for your replies, I’ll let you know if anything groundbreaking occurs!
“I spoke to my GP re: prescribing Viagra & apparently it’s only used for men! Gggrrrrr Oncologist!”
It’s been used in women as well. It works in men by increasing peripheral blood flow to the genital area, aiding an erection. In women, this increase in blood flow has been found to increase sensations in that area.
Ninja it might be worth doing some online research about this, printing it off and taking it to show your GP. Also you could ask your onc to write to your GP saying that they’ve recommended it for you.
Nymeria, I have to say that since stopping chemo and settling into the Tamoxifen routine, things have improved slightly. It was the chemo poisons that were the worst.
Hi everyone!. I’m so pleased NIkki that you have opened up this issue, which I have been wrestling with for the last 10 years, since my 1st diagnosis. Since then surgery, FEC, tamoxifen,more surgery, taxotere, arimidex, capcitebine, vinoralbine, more capcitebine and now taxol have all taken their toll on my sex life in lots of different ways.
Problems:
The oestrogen suppressing effects of tamoxifen and then arimidex reduced my libido, and made sex much more difficult, and sometimes painful, due to vaginal dryness.
Losing first one, and then the 2nd breast and replacing them with scars and lumps has made me feel much less attractive. It’s hard not to feel that no one in their right mind would want to have sex with someone who looks like me.
Steroid bloating to my face and body have made me feel like a Tellytubby.
The combined effects of chemos have frequently meant that my genitals have been unable to feel any pleasurable sensations and, despite enjoying the closeness of sex with my husband, my inability to respond has spoiled his enjoyment and undermined his self confidence. When I don’t smell the same to him as I used to (lack of hormones stops those pheromones which make someone smell sexy and not ‘like an old woman’) and my vagina is unresponsive and doesn’t feel the way it used to, that lack of basic feedback is really damaging.
At it’s worst, I was completely unable to have sex because the capcitebine was causing painful cracks to appear around my clitoris and between my labia.
The mis-match in my husband’s and my libido was such a problem that we both discussed it with the GP. He suggested to me that I use lubricants but couldn’t prescribe Replens because of my oestrogen positive cancer. He suggested to my husband that he have an affair! Luckily he (my OH) didn’t want to expolore that option, but he did get desperate enough to try testosterone suppressing drugs to reduce his frustration and to get a sense of what it was like for me.
Solutions:
Good lubrication is absolutely essential. We have found that the best sexual lubricant is Liquid Silk, which is available on line at a good price from freedoms-shop.nhs.uk/
They are part of the NHS and send it quickly and discretely wrapped. I’ve also found that intercourse is more comfortable when my OH has removed the hair from around the base of his penis by close shaving or plucking.
Talk and talk and talk again about how you feel with your partner. We thought that we had talked it all through as much as we could, but then my OH bought a book called The Sex-Starved Marriage. We started reading it together and it provided a way in to being really honest with each other about our feelings, including the bad stuff which we hadn’t said because we didn’t want to hurt each other. The result was the best sex for years!
Realise that you would still love and desire your partner if he/she had a damaging cancer, and accept that you are still lovable and desired. This is not always easy.
If your genitals are not cooperating, get physically close in other ways eg. lots of hugs and kisses, mutual massage or masturbating your partner. It’s not the same as the close intimacy of intercourse, but it feels pretty good and we all need to be touched and reassured that we are wanted.
Remember that things don’t always get worse. I’ve had times when things improved, and then got worse again on the next chemo, and improved after chemo.
Thank you so much Nikki for starting this thread. Sexual feelings are such an important part of enjoying life, and those few of us who are posting are not the only ones suffering from this very major ‘side effect’ of cancer and its treatment. I have suggested on Website Feedback that there be a section of the Forums devoted to Sex and Relationships so that everyone, no matter what stage their cancer, can join in discussion of these issues.
I had a real libido problem at the diagnosis and I had quite a high sex drive prior. I think I just saw my body as a threat all of a sudden. Every time we were “doing the nasty” (lol) I’d be thinking of cancer and I could not orgasm for the life of me, I just wanted to cry.
During chemo I wasn’t up to much but still had sex once a week or so.
Since chemo we’ve been too busy doing up attic and sleeping in living room so sex life has been stifled in that respect. I still get the urge but just not the energy. Seems to be at once a week. My OH hasn’t had a high sex drive as me so I’m sure he’s relieved to be getting a break! LOL. (for shame)
I’ve noticed that I’m not as driven as i was prior, I’m on Tamoxifen. It takes a lot longer to “stoke the fires” than it did and stings after, don’t want to use lube at 34, feel it’ll remind me of why we’re using it and then put me right off wanting to do it.
I am interested to hear more about the comment made about Replens. My GP prescribed this and I am now worried as my bc was hormone positive as well as Her2 positive. Can anyone advise further please?
PS Replens not really doing it for me anyway…
Hi El Katrano,
It’s bad enough having cancer, but you are very young to be plunged into menopause by the (anti-oestrogen) Tamoxifen. I didn’t have problems with the idea of using lube, as I seem to have needed it for most of my life. Hopefully you won’t need to use it all the time, but it’s worth giving it a go while it’s necessary. And the sexy dreams? It sounds like your mind is still just the same as it always was, which is reassuring. Despite the cancer, you are still the same person inside.
Love, Lynn
Re: Replens, my BCN and GP and the patient information with the product all state that this product is non-hormonal therefore safe to use if ER+. Ditto Sylk
I think I need to make the effort to try talk to my GP about this, it’s just so hard doing that!