What no one tells you about having sex after cancer.

News flash: dealing with the aftermath of cancer is no joke. And it’s not just because of the emotional roller coaster that comes with having faced a serious, life-threatening illness. Cancer treatments can wreak havoc on your body, send your emotions into disarray and put a total downer on your sex life.

According to the Cancer Council of Australia, an estimated 138,000 new cases of cancer will be diagnosed in Australia this year, with that number set to rise to 150,000 by 2020.

The survival rate of many types of cancer has increased by more than 20 per cent in the past three decades due to treatment improvements and new interventions brought about by research. But just because a person is cancer-free doesn’t mean everything is hunky dory.

It’s fairly common for women to experience vaginal dryness and extreme sensitivity, pain during sex and treatment-induced menopause post-cancer. And if all that isn’t enough to keep a person from getting between the sheets, other medications prescribed during, and after, cancer treatments like anti-nausea, painkillers, anti-anxiety and antidepressants can all work to lower sex drive.

The good news is that these side effects can be effectively treated. The bad news is many patients aren’t getting the support they need to manage and treat their symptoms. Women’s enjoyment of sex and their vaginal health is still considered taboo and a lack of awareness about women’s health issues and a culture of silence and shame work to prevent many women from seeking help.

Bec* was diagnosed with breast cancer at age 35, she underwent chemotherapy treatment and had a radical hysterectomy and she says that her sexual health just wasn’t discussed when treatment options were on the table.

“The oncologist or surgeon focus on keeping you alive, on killing off cancer. They tell you what they perceive you need to know to do this. Issues with vaginal health were just not a concern – the only concern of my oncologist gynaecologist was risk of cancer, nothing else.

“I was informed about the cancer process, about what patients need and about the side effects. But if I knew about the stuff that’s ‘not in the brochure’, there’s no way I would have proceeded with radiation and chemo treatments like I did.”

Bec’s treatment led to early onset of menopause, a common side effect. In fact, around two-thirds of all women who are under the age of 50 when they are diagnosed with breast cancer will go through menopause because of their treatment, according to the Cancer Council.

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But it’s not just well known menopausal symptoms like low desire, night waking, mood swings and hot flashes that concern patients. Many cancer survivors who have experienced menopause as a result of treatment say vulvovaginal atrophy (VVA) is one of the worst side effects.

VVA is when the vaginal walls become thin, dry and inflamed as a result of low estrogen levels. VVA can cause vaginal dryness, burning, and itching, general pain, pain during sex (aka dyspareunia), and possible shortening or narrowing of the vagina.

While Bec was undergoing chemotherapy, she began to experience vaginal bleeding and pain during sex which became excruciating after her hysterectomy. She says doctors mainly palmed her off or told her to “use organic lubricant.”

Bec finally visited her oncologist because she couldn’t even wipe with toilet paper without causing tears and bleeding in her labia. But he simply gave her a set of dilators and told her to “use them in the shower.”

“I am literally dry from the inside out. The skin on my vagina will still painfully tear from exercising. And I know I am not the only one.

“Five years after diagnosis, I am still having symptoms no one can see, and most doctors don’t want to deal with, especially in a ‘young’ woman. And that is one of the loneliest parts of life after cancer,” said Bec.

Sadly, Bec’s experience is not unique and it’s not just breast cancer survivors who suffer side effects. Cancer treatments can cause sexual health problems regardless of where in the body the cancer is located.

Carly* was diagnosed with lymphoma when she was 29 and began experiencing unexpected sexual health problems as a result of treatment.

“At no point during or after my treatment did any of my health professionals mention anything to do with my vaginal health. After chemotherapy when my partner and I were intimate it really hurt it was quite raw and tender and I felt quite fearful. I went to see my GP to ask her about this but she had no experience in this area and couldn’t advise me,” Carly said.

Many cancer survivors believe that what they’re experiencing is just a normal part of ageing or they’re just having pain because they haven’t had sex in a while. Some women believe the hot flashes are just part and parcel of chemo and don’t realise it can be the onset of menopause. Others are simply too ashamed to speak up. Women in these situations often don’t proactively seek the help they need.

It doesn’t have to be this way, with the right help and support, post-cancer patients can manage and treat their symptoms. Every patient’s experience of cancer and its side effects is unique, different options like vaginal dilation therapy, hormone replacement therapy, laser therapy, sexual counselling, alternative therapies, and using a quality lubricant can help.

Most of all, supporting women to live full and fabulous lives after cancer requires a great deal of empathy and a major shift in how health professionals treat the sexual health of their patients. It requires doctors to proactively inquire about a patient’s sexual health, even if the cancer isn’t related to their sexual organs. And it requires creating spaces where women feel safe and supported to talk about their vaginal health and raise the challenges they are facing without having their experiences minimised.

Oncologists and treating teams need to make pelvic health a priority through the patient’s whole journey.

GPs, who are at the front line, need to know that VVA is a common complaint in post-cancer patients. And health professionals need to come together to deliver integrated, multidisciplinary approaches that not only work to treat a woman’s immediate pain and symptoms but improve her quality of life.

If you’re dealing with sexual health issues after cancer, speaking up is the first step to getting support and treatment. No one is more qualified to talk about what is happening with your body than you. Keep asking for help and seeking answers.

Supportive, knowledgeable and empathetic GPs, women’s health physios, gynaecologists and other health professionals do exist. They’re out there and they can help you find ways to optimise your pelvic health and improve your quality of life.

There are also some amazing resources out there that can help you on your journey, here are a few from the Cancer Council to get you started:

Sexuality, Intimacy and Cancer
Let’s Talk about Sex after Cancer
LGBTI cancer support
Cancer Council 13 11 20 Information and Support service

*Names were changed.

Emma McGeorge is the founder and CEO of The Pelvic Hub. She’s a physiotherapist and pilates instructor who believes managing pelvic health should be about helping the whole person. Emma has managed her own pelvic health issues and is passionate about combating stigma around women’s health. When she’s not busy raising awareness, hunting down the latest research or taking care of her own pelvic health, Emma loves to get out in nature, hang with her family or go out for a coffee with her friends. You can check her out on instagram @thepelvichub.