Sex after cancer: what the doctors don’t tell you

Life 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 treatment can be just as devastating—or more—than getting a cancer diagnosis. That’s because  cancer treatments wreak havoc on your body, send your emotions into disarray and put a total downer on your sex life, thanks to the way it often affects sexual function.

According to the American Cancer Society, there will be an estimated 1.9 million new cancer cases diagnosed in 2022.

The survival rate of many types of cancer has increased by more than 20 per cent in the past three decades due to improvements in cancer treatment methods and new interventions brought about by research. However, as you know if you’ve battled this disease, being in remission or even labeled “cancer-free”  doesn’t mean everything is hunky dory.

It’s fairly common for women to experience decreased sexual function due to vaginal dryness and extreme sensitivity, pain during sex, and cancer treatment-induced menopause. 

And if all that wasn’t enough to keep a person from getting between the sheets, many medications prescribed during and after cancer treatment, such as anti-nausea, painkillers, anti-anxiety and antidepressants can all work to lower sexual desire.

The good news is the side effects of cancer treatment 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. A lack of awareness about women’s health issues and a culture of silence and shame works together to prevent many women from seeking help.

Amy* was diagnosed with breast cancer at age 35. She underwent chemotherapy treatment and had a radical hysterectomy. When treatment options were on the table, her sexual health simply wasn’t even part of the conversation.

“The oncologist and surgeon focus on keeping you alive, on killing off cancer,” says Amy. “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 gynecologist was risk of cancer, nothing else.”

“I was informed about the cancer process, about what patients need and about the side effects,” she says. “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.”

Like many cancer survivors, Amy’s treatment led to early onset of menopause, a super 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.

However, most of them don’t only experience the well-known menopausal symptoms like low desire, night waking, mood swings and hot flashes. Many female cancer survivors who have experienced this say sexual dysfunction due to 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 Amy was undergoing chemotherapy, she began to experience vaginal bleeding. Pain during sex became excruciating after her hysterectomy. She says doctors mainly palmed her off or told her to “use organic lubricant.”

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

“‘I am literally dry from the inside out,’” Amy says she would tell her doctors. “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,’” she adds. “ And that is one of the loneliest parts of life after cancer.”

Sadly, Amy’s experience is not unique and it’s not just breast cancer survivors who suffer side effects.

Cancer treatment can cause health problems with sexuality and sexual intimacy regardless of where in the body the cancer is located.

Emma* 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,” Emma says. “After chemotherapy, when my partner and I were intimate, it really hurt. I 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.”

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 such as 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 side of their patients’ health. 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 minimized.

Oncologists and treatment teams need to make pelvic health a priority throughout the patient’s entire 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 desire or 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 providers, including GPs, women’s health physios, gynecologists and other health professionals do exist. They’re out there and they can help you find ways to optimize 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:

*not their real names