‘It took 14 years for my GP to take my endometriosis seriously’

Becca Fowles was 16 when she first experienced symptoms of endometriosis. Her periods had become painful - “too painful,” she says - so she visited her GP.

“I was told it was normal and to just deal with it,” says the now 35-year-old, who works as a marketing manager at a London university.

Over the next few years, the same pattern continued: Fowles would consult doctors about the pain, and every time they would tell her it was normal. Eventually, she was put on the contraceptive pill and stayed on it for about 10 years. But when she came off it, her symptoms grew worse. She found it increasingly difficult to urinate while on her period, and then the whole time.

“I went back to the doctor, and still nothing,” she says. “Finally, 14 years later, a GP took me seriously and I was referred.”

It took 14 years and about 10 visits to doctors both male and female before, at 30-years-old, she received a diagnosis of endometriosis, a condition where tissue similar to the lining of the womb starts to grow elsewhere, for instance in the ovaries and fallopian tubes.

It is thought to affect about one in 10 women in the UK. But despite its prevalence, it remains astonishingly difficult to receive a timely diagnosis or the correct support, a problem laid bare by a new report by MPs. The All-Party Political Group inquiry found 58 per cent of people visited their GP more than 10 times before diagnosis and 53 per cent attended A&E with symptoms before diagnosis. The average time it took a woman to receive a diagnosis was eight years and there had been no improvement on this in a decade.

Fowles, who is now an endometriosis and chronic illness advocate living in south east London, believes there’s a long history behind this.

“It goes back hundreds of years to women being treated as inferior humans,” she says. “The majority of medical testing is done on white males. It’s ingrained in our society and culture and the medical system that women have periods and they hurt and that’s just what it is.”

Like many of the women who spoke to the inquiry, Fowles’s whole life has been adversely impacted.  She has undergone five operations since her diagnosis, including surgery to help her urinate.

“There’s no getting away from the fact I have a chronic illness and there’s no cure,” she says. “The only way for it to be treated is through painkillers , hot water bottles, sucking it up, dealing with it, carrying on. I find it difficult in terms of social plans, friends and relationships. I have to cancel plans, and it affects my sex life. Sex hurts me.”

Yet society’s understanding of a condition that affects so many remains poor. While Fowles’ current colleagues are very supportive, in her previous job this wasn’t the case. “It felt like constant judgement and [as if] I was lying. I was told that only women with children should be allowed to work from home, which was double-edged because I might not be able to have children because of my endometriosis.”

What hurt the most, however, was the suggestion from a doctor when she visited him as a teenager that what she really needed was counselling. “He said ‘perhaps you could benefit from speaking to someone about this because this is normal pain,’” she recalls. “But then he didn’t offer me any mental health support or show me how I could get that. It just made me feel like this is all in my head. I was ashamed and embarrassed and thought it must just be me making a big deal about it.”

The taboo of discussing anything related to periods prevented her from talking to friends or family either.

Shaheen Khazali, consultant gynaecologist and endometriosis surgeon at the private Lister Hospital in Chelsea (part of HCA Healthcare UK), agrees that women not being listened to by their doctors may partly explain delays in diagnosis, but argues it is not the only reason.

“I believe it’s multifactorial,” he says. “It’s not just as simple as we’re not listening to women – there is an element of that – but it starts in the family. You start getting your period and go to your mum, sister and friends and say ‘my periods hurt’ and the usual answer is ‘so what? Mine hurt too’. So I think there’s an element of family and friends not taking it seriously too.”

At the same time, GPs can’t refer every woman who presents with pelvic pain as it is “very common” and to diagnose endometriosis, a laparoscopy (keyhole surgery) is generally required, he points out. “Are we going to do a laparoscopy on everyone? No,” he says. “So GPs have the difficult job of choosing whose pain is more serious than others.”

The biggest culprit, he suggests, is the nature of the disease itself: “As yet we haven’t found a non-invasive test to tell us if someone has endometriosis or not.”

Still, Endometriosis UK condemns the delays in diagnosis as shocking. “Doctors will always want to rule out other conditions first but, even in the 21st century, women are still being dismissed for their pain, are being told it’s in their head, that they’re making it up, that it’s a mental health problem,” says Faye Farthing, a spokeswoman for the charity.

“A lack of education and a societal taboo mean women don’t know what they’re experiencing isn’t normal. So many don’t even know to get help.”

GPs therefore need to be better educated to recognise the signs and symptoms and girls and women need better education around this too, she argues.

Fowles is hopeful the MPs’ report will help set the wheels in motion.

“It’s going to be a piece of the puzzle to help [with] endometriosis treatments and the diagnosis journeys for all the people out there with [the condition],” she says. “But so much more needs to be done.”