Women shouldn’t have to depend on loyalty cards for diagnosis

If healthcare took female pain seriously, maybe we’d consult our GPs in the first place.

Illustration by Jesse Zhang / Ikon Images

A Cancer Research UK-commissioned study published last week suggests that ovarian cancer in women could be diagnosed quicker by tracking loyalty-card points for over-the-counter prescriptions and the purchase of pain medication. Its questionnaire also found that the participants with ovarian cancer began to recognise their symptoms about four and half months before diagnosis, but not everyone visited a GP. Those who did, recognised their symptoms three and half months before diagnosis. In the meantime, they took painkillers and antacids and tried to live with their pain. They preferred a pharmacy to visiting a GP. What stands out for me in this study is how it is considered normal that women would keep bearing discomfort on their own.

One of the reasons women do not visit their GP is because they don’t think their condition is serious. They are afraid that they are overreacting, because this is what women are often accused of doing. As I wrote in my book Hysterical, hegemonic masculinity, or the idealisation of typically masculine characteristics in healthcare, means that anyone who shows stoicism, resilience, strength and endurance are perceived more favourably than those presenting sensitivity and discomfort to pain – as these have long been considered inferior attributes.

There is plenty of evidence that shows women experience disbelief at the early stages of a healthcare encounter, and experience pain for longer before they are referred to a specialist clinic compared with men. This is the Yentl syndrome, which suggests that women are only treated seriously if they are perceived to be as sick as a man. Men wait an average of 49 minutes before being treated for abdominal pain. For women, the wait is 65 minutes for the same symptoms.

In 2016, the UK’s Brain Tumour Charity released the results of a questionnaire completed by more than 1,000 people. It found that almost one in three patients with brain tumours had visited their doctor five or more times before they received their diagnosis. Almost 25 per cent had waited more than a year before they were diagnosed. Women were more likely than men to wait at least ten months between their first visit and diagnosis. Several reported not being taken seriously.

I am currently on a rapid-access pathway for a similar diagnosis (or, hopefully, good news). I finally have a hysteroscopy scheduled, more than four and half months since I drove myself to A&E at midnight with severe abdominal pain and unusual bleeding. I did not go to my GP because I didn’t have the confidence from past experience that my pain and discomfort would be taken seriously. It took six weeks before I was referred to the rapid-access team at the women’s hospital for further tests. Even then I’ve had to follow it up many times, emphasising the urgency of the situation.

When the lead gynaecologist called me up and stressed the need to schedule the procedure as quickly as possible, I could almost have cried. I had been so worried about being seen as hysterical (oh, the irony!) that I had been downplaying the seriousness of the situation, and my pain. I have lived with anxiety and dread, and also the discomfort from been advised to just take painkillers. There is a misconception and expectation that women should be able to tolerate more pain, which can lead to that expression being treated with suspicion and hostility. This can lead to emotional outbursts, anger, outrage and more stress and strain, which in turn reinforces the perception that much of female pain is due to psychological reasons and emotionality. Women’s emotionality is taken as a sign that they are out of control and overreacting.

I heard about the loyalty-card study on a long drive after a medical appointment, and it made me angry. If women were not repeatedly given the message that their pain would be perceived as hysterical, creating a fuss, or wasting the GP’s precious time, then perhaps they would consult one sooner. There would be no need for women to live in discomfort for months before they are seen by a medical professional. No one should have to. Greater awareness around ovarian cancer symptoms is needed too, as is a better diagnostic pathway for women who experience its symptoms. Ovarian cancer is the world’s eighth-most common cancer, with more than 313,000 new cases globally in 2020. In the UK, more than 70 per cent will survive their cancer for only a year or more after diagnosis.

The NHS is under pressure, and GP appointments are gold dust. But this is why the government needs to put more funding into the NHS, which is wonderful when it works. More resources should go into training staff to recognise symptoms and address implicit biases in the way they react to women’s pain. If GPs weren’t so dismissive, and women developed more confidence in them, we wouldn’t need to rely on loyalty-card data to diagnose ovarian cancer. The study is not something to be proud of or celebrate. It reveals the weaknesses of our medical system, and they need to be addressed urgently.