‘Doctors told me I had hayfever – instead a brain tumour left me blind in one eye’

Scores of women are being fobbed off or misdiagnosed by the medical profession – with serious consequences

Karolina Barnes: ‘The more I spoke to people, the more I realised I’m not the only one who’s been misdiagnosed’ Credit: Geoff Pugh

For years, Karolina Barnes had suffered with headaches that would gather in her forehead like a stormcloud. Occasionally, she had itchy eyes. On repeated visits to her GP, she was told that she was suffering with “year-round hayfever,” says Barnes, who lives in Rochester, Kent, with her husband, 58. “Even when I only had the headaches, they still said it was hayfever.”

It was in 2007, when she became pregnant with their second daughter, Sophie, that things took a turn. 

“Within eight weeks, I started to feel as though there was something in my right eye, like a constant eyelash,” says Barnes, 43. “Then, one day, I was picking up my older daughter, Natalie, from school and I tripped. There was a step that I just hadn’t seen. When I got home and took my glasses off, I realised that my vision was really blurry.”

Worried, she saw her GP. “He said ‘it’s just hormonal, it will settle down. It’s because you’re pregnant and going through lots of changes’,” she recalls. “He dismissed me.” 

A month later, Barnes’s eyesight had worsened, so she walked into her local Boots. “The optician examined me and said ‘you need to go straight to hospital’,” she recalls. There, Barnes was told that her symptoms could indicate MS. This further misdiagnosis, she believes, meant she wasn’t called for an MRI for another month. 

That scan finally revealed the truth: Barnes had a meningioma tumour measuring around 6cm in her brain. Doctors believe it had been growing since she was a teenager, but that pregnancy hormones had caused a spurt – in just a few weeks it had likely tripled in size and wrapped around her optic nerve, ruling out surgery. “I lost six weeks during which they could have saved my sight,” says Barnes. “But it was too late. I’m now blind in that eye.

“My GP sent me a letter of apology, but I felt so angry. And the more I spoke to people, the more I realised I’m not the only one who’s been misdiagnosed.” 

‘If my doctor had picked it up straight away then things might not be this way’ Credit: Geoff Pugh

A new study by health platform Livi backs that up. According to the survey of 2,000 UK women, more than half (57 per cent) say they felt as though they haven’t been diagnosed correctly after visiting a healthcare professional, rising to 64 per cent among those aged 35 to 44. 

And while men can, of course, be misdiagnosed, there’s a bank of evidence that points to women being disproportionately impacted. Indeed, a report by men’s health platform Manual, last December, found that Britain has the 12th highest female gender health gap in the world – meaning that women have poorer health outcomes across their lives than men. Researchers put it down to “the misdiagnosis of women’s symptoms”. In their league table of the top 66 countries with a male health gap, the UK didn’t feature. 

Hormonal conditions are among those frequently misdiagnosed in women, often attributed to depression – a third of women who visit a GP with menopausal symptoms, for instance, are wrongly prescribed anti-depressants. 

Gynaecological conditions are also up there. A shocking 2020 parliamentary report found that it takes an average of 7.5 years to diagnose endometriosis – a painful illness that sees the womb lining grow elsewhere in the body. The Royal College of Obstetricians and Gynaecologists recently revealed that gynaecology waiting lists had seen a 60 per cent rise post-pandemic – the biggest increase of all elective specialities – leading to worries that things could only get worse. 

But it would be wrong to think that the gender health gap applies only to those conditions we tend to label as ‘women’s health’. There are countless examples of illnesses where women make up the majority of sufferers, yet are diagnosed significantly later than men: certain cancers, dementia and autoimmune diseases among them. 

In 2016, the Brain Tumour Charity warned that women were being dismissed as attention-seeking or told they were “tired” by doctors, leading to late diagnosis of tumours. Heart attacks are another one – University of Leeds academics discovered, in 2018, that women are twice as likely to die in the 30 days following a heart attack than men, as they’re less likely to receive the recommended life-saving care. And according to a 2008 study, women who go to A&E with abdominal pain wait, on average, 65 minutes to see a doctor compared to 49 minutes for men, and are less likely to be given painkillers. 

So what’s going on? 

“The fact that the gender health gap exists is not surprising considering that, for centuries, women’s bodies were entirely excluded from scientific study,” says Mika Simmons, author of new book The Happy Vagina, which unpicks taboos around women’s health.

She calls it “medical gaslighting” and traces it back to the 16th century, when the bodies of executed criminals – who were overwhelming male – were used in medical research. The use of female cadavers wasn’t widespread until the 19th century, but even then the female reproductive system was considered too scandalous to print in anatomy books. 

“No wonder doctors historically put our pain down to hysteria – they didn’t understand it,” she says. “I don’t know any woman that hasn’t gone to her doctor with a physical ailment and been told she’s stressed, or to take anti-depressants and try mindfulness. That’s the modern day equivalent of telling a woman she’s hysterical.”

“I don’t think anything’s changed. We’re still described as ‘more emotional’,” says Dr Karolina Afors, consultant gynaecologist at London’s Portland and Whittington hospitals. “Because of that, disorders for which there’s a physical reason are just written off, or you’re labelled as having psychological issues.”

This exclusion of women extends to clinical drug trials, from which women (particularly of childbearing age, following the thalidomide scandal) were routinely left out until the 1990s. As recently as 2015, 23 of the 25 participants in a trial for ‘female Viagra’ were male – and male lab rats remain the norm.

“We were often considered too ‘difficult’ to study because we had fluctuating hormones,” says Dr Afors. “It means women are more likely to suffer adverse side effects because drug dosages are based on trials that were done on men.”

The result, writes Caroline Criado-Perez in her book Invisible Women, is that the gender health gap “has its roots in seeing the male body as the default body”.

Britain has the 12th highest female gender health gap in the world – meaning that women have poorer health outcomes across their lives than men Credit: SolStock

You don’t have to look far to identify that default today. Take the models used to train paramedics in CPR which are – you guessed it – male and flat-chested. Similarly, the crash test dummies used to test car safety are also based on the male body – and where companies have claimed to use “female” dummies, they are generally just smaller versions of the male ones. 

Another major problem is funding. “One in 10 women has endometriosis, which is about 190 million worldwide. It’s as common as diabetes, but the budget spent on endometriosis research compared to diabetes is insignificant,” says Dr Afors. “It’s trendy for people to talk about women’s health, but I don’t think they actually put the money up. That’s why you’ve got this unmet need for women – it’s underfunded and under-researched.”

Could that be about to change? Last month, the Government published its first women’s health strategy, which it claims will “reset the dial” on the gender gap. Including measures to improve gynaecological diagnoses, expand women’s health hubs and widen access to HRT, it has been seen as an important first step. But Dr Afors thinks it doesn’t go far enough. 

“I’d like to see more investment in women’s health research and in trying to get Big Pharma on board by making clear this one size fits all approach doesn’t work,” she says. “We also need more specific guidance about the differences between men and women. Every medical student is taught to treat ‘a patient’ and I think the importance of differentiating between men and women has become apparent – rather than just saying ‘well, we’re all the same’ and that’s it.”

One measure in the strategy that speaks to that – and has won Karolina Barnes’s approval – is mandatory training for doctors on how to treat female medical conditions. 

“I know GPs are under pressure, but when women raise issues, we are fobbed off. It’s like ‘you’re too emotional or too dramatic, don’t worry about it’,” says Barnes.

She is still angry about how many times she was misdiagnosed and the lack of treatment options it left her with. “I try to have a normal life but ultimately I’m living with ‘wait and see’,” she says. “It’s stressful. If my doctor had picked it up straight away then things might not be this way.”

How to make sure your GP listens

Go armed

There’s plenty of information about women’s health, so print out what you think is relevant and take it to your GP, advises Dr Afors. “You can also record how you feel in a diary,” says Mika Simmons. “Then go in and hold it in their face. Say: ‘I spent two days in agony during my period. Do not tell me this is OK.’”

Don’t give up

“Advocate for yourself,” says Dr Afors. “Say to your GP, ‘Listen, I’m really worried, can I have a second opinion?’ We do make mistakes as doctors. So if you don’t feel happy or that your symptoms are being properly addressed, ask to see another GP or for a referral.”

Find out your family history

“So many people don’t know what their mum’s menopause was like, or their family history of heart disease,” says Simmons. “If you find out, then you can say to the doctor, ‘I’ve got this weird thing going on – and by the way, my mum had this’.”

Know normal

Both Dr Afors and Simmons recommend understanding what “normal” looks like for the female body, so when something goes wrong you’re confident in pushing for answers. “It’s up to us to understand our bodies and be able to say to the doctor ‘that thing I told you about two weeks ago, it’s still happening and I want tests” she explains. “It’s not your responsibility to diagnose yourself, but if you take responsibility for your own health outside of illness, you’ll know if you're being fobbed off.”