After breast cancer treatment, intimacy can feel like a distant memory – one woman shares how she and her husband found their way back. Photo / Getty Images
New research reveals 98% of women coping with breast cancer struggle with intimacy. It’s no wonder, says one woman who has experienced it.
Breast cancer runs in my family so I’ve always been vigilant about self-checking. As soon as I found a lump, in September 2021, I went to the GP. A month later a biopsy confirmed I had grade three, triple negative breast cancer. It wasn’t genetic, just bad luck.
In the month between being diagnosed and starting treatment I genned up about what lay ahead. I learnt that the six month course of chemotherapy I would need, followed by a double mastectomy, would leave me tired and nauseous. I would feel drained and lose my hair. Yet no one warned me of this: breast cancer kills your sex life.
Up until my first chemo “infusion” my sex life was very healthy. Yes, even after the diagnosis four weeks earlier, we were still intimate. Sex was always an important way we connected and comforted each other. Friends were always surprised (perhaps envious, even) that my husband Sam and I still “did it” twice weekly. Despite having three children, now aged 19, 17 and 11.
We met aged 16 after a school leavers’ party but only married in 2015. Growing up together gave us a mutual trust, we shared the same curiosity and sense of fun in bed. Sex was special, passionate, the constant thread and glue of our marriage. We were lucky, I know.
I really wasn’t prepared for the extreme, very rapid, physical changes of chemo – everything changed within just a week. By day six I was lethargic, pale and physically sick. My straight hair fell out so thick and fast that by day 12 I’d shaved it off. Sam, a plumber’s merchant, shaved his too, in solidarity.
I couldn’t sleep, I was tearful and angry. Why me? I was 38, I ate well, trained at the gym, and only occasionally drank wine. On top of my job as an office manager I also taught Irish dancing. And I’d suddenly gone from being a young, vibrant mum to a sickly woman.
As soon as treatment began my periods were replaced with menopause symptoms – hot flushes, night sweats, anxiety, vaginal dryness, and a total and utter loss of libido. Life became about existing, not feeling “alive” and certainly not sexy.
During cancer treatment, you’re made to feel you should be incredibly grateful to be getting this life saving treatment. And of course I was, but no one warns you that afterwards (God willing, if you’ve made it) you still need to exist as a person. And you might not even recognise her.
In May 2022 I underwent a preventative double mastectomy and a DIEP reconstruction (where my own fat, skin, and blood vessels from my tummy were used to rebuild my chest). I then suffered later complications needing more nips and tucks, including the removal of my gallbladder as it had developed a cyst two months after surgery. I was also left with nerve damage.
My body changed beyond recognition and this devastated my mental health, too. Post-surgery, I couldn’t look in the mirror for four months. At my check ups, I asked nurses and doctors to stand me nowhere where I might see a reflection.
My way of dealing with my new body? Don’t look.
Considering all this, it’s hardly surprising I didn’t have sex for 12 months after my treatment started. Then due to all the smaller, subsequent ops, any efforts towards intimacy were at best sporadic.
I felt so anxious about this lack of sex and our changing marriage and yet so alone as no one talked about it. But a new report commissioned by the charity Breast Cancer Now reveals that 98% of women with the disease say the same thing. To those 2 per cent of women who say their sex life wasn’t affected: kudos! Mine was decimated.
I felt desperately unwell and as though I’d ceased to be an object of desire, instead Sam needed to look after and protect me. I hated that my handsome, gym-going husband had turned into my carer. This shift in our dynamic was devastating.
Sam believed it was “right” not to hassle me for sex, but I feared he was “going off” me, and accused him of being distant. He would argue “sex isn’t even on my mind, my priority is your next appointment”. There were some heated discussions; when you’re used to being physical you miss it. I craved affection, hugs and kisses, but these non-sexual gestures were harder too because of Covid and my chemotherapy-compromised immune system. We were anxious I’d catch anything and slept separately.
‘I felt so anxious about this lack of sex and our changing marriage and yet so alone as no one talked about it’
Sam is faithful, but of course it crossed my anxiety-ridden mind that he might cheat. I also worried that after the cancer, would I have a marriage left? I’d read about couples breaking up after this ordeal, that scared me.
A year being celibate, when we eventually had sex again we took it very carefully. I was self conscious about my new scars, lumps and bumps. Would he still find me attractive? Sam reassured me he did, though admitted he was scared of hurting me.
While women need support to get through everything, remember that men suffer, too. They’re scared about all sorts from performing to being pushed away. When you’re returning to sex after a long time, don’t imagine you’ll be going full throttle, or planning dirty weekends with sex toys! No.
I advise other women to be patient, don’t pressure yourself. Keep trying to have honest conversations, however awkward.
What worked for us was both writing a sentence down on a piece of paper as we thought of things which we put into a jar for later. Then when we were together (I’d recommend over a cuppa rather than any forced “date night”) we would dip into the pot and see what came out. I wrote “I like neck kisses”. Which felt intimate while avoiding my sore areas. Sam, who’s a weight-lifter, said “I love massages”. He didn’t mean a sexy one, it was just sensual.
These tiny things helped open the gateway.
Three years on and I’ve had to learn some self-acceptance. Because there’s no breast tissue any more to have mammograms or ultrasounds, I’ve had to get used to looking at my body and taking pictures to check the healing. My best coping mechanism was using positive reinforcement. By which I don’t mean telling myself in the mirror “you’re gorgeous,” it’s more about seeking good things and saying them aloud, such as “I’m not as red as before” or “the symmetry is getting better,” or “I’m less pale now.”
When my hair grew back in strange corkscrew ringlets I said, “yes it’s different, but this suits my personality.” I searched the high street for front fastening, feminine bras with smaller straps and some lace (try M&S and Primark). Do anything that helps you feel better about yourself, whether it’s make-up, scent, or new clothes.
Getting our sex life back on track is still a work in progress, we joke that we’ve “tailored it”. I don’t think we could possibly be the same after what we endured.
We’re back to making love twice a week but it’s different, more gentle. At 40 I realise that whirlwind crazy sex wouldn’t have lasted perhaps, but sometimes I miss that hot passion.
I’ve had to mourn the loss of our old marriage and accept that this is a new, different one. I never imagined I’d be talking about sex so publicly, but it’s time this taboo came out into the open.
Anyone looking for support can speak to a breast cancer nurse at Breast Cancer Now on their free, confidential helpline 0800 800 6000 or visit their website to find out more about the campaign ‘Left Unsaid’.
By Sally Kum, an associate director of nursing and health information at Breast Cancer Now
Body image: Breast cancer and its treatments can affect how you feel about your body. Non-sexual cuddling, taking gradual steps, and relearning how to give each other pleasure can help you feel more comfortable.
Practical solutions: Breast cancer treatments can cause menopausal symptoms, and we know that for many women this can impact their sex life. Using a vaginal moisturiser on a regular basis, and a lubricant during sexual activity can help improve symptoms, and help prevent pain alongside pain relief which can ease discomfort.
Plan: Fatigue – an extreme tiredness that doesn’t go away with rest or sleep – can impact how you feel about sex. Taking things slowly at first may help. Think about what kind or level of intimacy you feel comfortable with and how much energy you have.
Talk: Opening up about these things may feel daunting, so it’s important to know that you aren’t on your own. While it may be difficult at first, try to be open and honest about how you are feeling and what you both now expect from sex and intimacy. This can avoid mixed signals and can make your partner aware of your limits
Accessing support: Organisations like Breast Cancer Now offer information and support including peer to peer support with someone who understands, through its ‘Someone Like Me’ service.
Professionals: Your healthcare team can provide personalised support and information and signpost you to organisations that can help. Breast Cancer Now’s nursing team have experience, skills and knowledge to talk to you about your body, intimacy and sex.
As told to Susanna Galton
Liesl Benecke owns 1035 Minion items, including Swarovski crystal figurines.