"My first period looked like a murder scene. It started when I was 10 years old, and I was rolling around in bed in so much pain that it woke me up," recalls 33-year-old Bridie Apple, founder of the Flow. Grow. Glow. yoga community.
"When my mum turned on the lights, the blood was all along the wall. It had soaked through the whole mattress, and when I put my hands down to my tummy and around my pelvis, it was everywhere," she says.
That horrifying first period lasted six weeks, during which time Bridie bled so heavily that she was changing a super size pad every half an hour. As for the pain, she says: "It was horrendous. I'd be doubled over, gripping onto things, while my friends just needed a hot water bottle and a bit of chocolate from their mums to cope with their periods."
Despite this, it took six years for Bridie's symptoms to be diagnosed as endometriosis – a common but little-known disease that affects one in 10 (1.5 million) women in the UK. "I think it would have taken even longer if my mum hadn't believed in me and fought for doctors to listen," she says.
Endometriosis is a condition where cells like the lining of the womb (the endometrium) are found elsewhere in the body – usually around other pelvic organs like the ovaries, fallopian tubes, bladder and bowel. It's a chronic and debilitating condition that causes painful or heavy periods, and can also lead to infertility, fatigue, and bowel and bladder problems.
Although it's the second most common gynaecological condition in the UK after uterine fibroids, there's still a lot we don't know about endometriosis – including the cause or the cure. The average time it takes for a woman to get a diagnosis is seven and a half years.
"It is a disease that is very poorly understood, even though it's been almost a hundred years since it was first described," says Dr Shaheen Khazali, a consultant gynaecologist and endometriosis surgeon, and honorary secretary of the British Society for Gynaecological Endoscopy (BSGE).
Some progress has been made in recent years, including the setting up of specialist endometriosis centres accredited by the BSGE. But, he says: "We are still struggling both as a scientific community and as doctors to properly understand and address the issue."
The reasons for this are complex, ranging from a lack of education and awareness among both patients and doctors, to limited research funding and a lack of adequate treatment options for women once they have been diagnosed.
Lack of research funding
According to Emma Cox, CEO of charity Endometriosis UK: "There hasn't been enough research funding into endometriosis, or in fact generally into women's health issues. The people deciding on research historically were men, and it's just not been perceived as a cutting edge area."
A 2015 study in the US found that diabetes, which affects 10% of the overall population, received more than $1 billion (over £76 million) a year in research funding while endometriosis, affecting 10% of the female population – so roughly 5% of the overall population – got just $7 million (around £5.3 million).
"We are starting to see some improvements, but we've got a long way to go to catch up," Cox says.
For years, women have just 'got on with it' or been told their symptoms were normal.
Lack of awareness
Beyond funding, Khazali says the complexity of the disease and the similarity of its symptoms to other conditions (such as IBS), combined with the subjectivity of pain and the fact that endometriosis can only be diagnosed through surgery, all contribute to the confusion and ignorance around the disease.
For years too, he adds, women have just 'got on with it' or been told their symptoms were normal. At Endometriosis UK, Cox says: "We speak to a lot of women who simply don't realise the level of pain they're getting is different from everyone else's."
A lack of awareness among GPs is another common barrier to diagnosis, which Elaine Denny, emeritus professor at Birmingham City University (BCU), says hasn't changed a great deal in the 20 years since she first started researching endometriosis.
"You still hear, 'I've been fobbed off' or 'nobody takes me seriously'," she says. "Maybe a few more women now are having a smooth passage through their endo journey, but an awful lot are still having this battle."
Lack of treatment options
In December last year, Denny and her BCU colleague Dr Annalise Weckesser published research highlighting the lack of effective treatment options for endometriosis.
"Many women suffering from the condition feel desperate to stop it from taking over their lives, but with no known cause and no definite cure, they end up trying a number of treatments, often with little success," Weckesser said at the time.
Endometriosis symptoms are currently managed through surgery and/or a variety of hormone treatments and pain relief options, but as Cox points out: "There are no specific drugs in the UK that target endometriosis. There's one called Visanne, which is available in Europe, Australia and America, but it isn't available here because the National Institute for Health and Care Excellence (NICE) decided it needed more research," she explains.
The ignorance I have experienced from (male) doctors has been disturbing. I do wonder, if this was an issue that affected men, if we would have a cure for it by now.
A waiting game
For patients like 30-year-old Hayley Smith, founder of Boxed Out PR, the slow progress is frustrating. "It's ridiculous. There are hardly any medications or solutions, and a cure isn't even being worked on. I've lost count of the number of times I have been offered a hysterectomy as if it's as simple as taking antibiotics," she says.
"There is so little knowledge, research and understanding of endometriosis, and the ignorance I have experienced from (male) doctors has been disturbing. I do wonder, if this was an issue that affected men, if we would have a cure for it by now."
Even when patients are diagnosed and referred quickly, Cox says, there are very long waiting lists to see a specialist in certain parts of the country and pain management options like pelvic physio are hard to come by.
Reasons to be hopeful
All of that paints a pretty bleak picture, but there is some good news. The government recently announced that menstrual education will be taught in schools from 2020, following a campaign by Endometriosis UK who hope this will help girls identify abnormal symptoms earlier.
The Royal College of GPs this month launched an e-learning menstrual wellbeing toolkit, in collaboration with Endometriosis UK, to help raise awareness of the symptoms and management of the disease among GPs.
"A lot of the glimmers of hope have come from the hard work and advocacy of women living with endometriosis," says Weckesser. "Women's stories of pain aren't historically validated and recognised but, like with the Me Too movement, we're starting to see a cultural move towards believing women's stories."
Khazali agrees: "I think there is hope that we are making the right progress. Surgery for endometriosis has really progressed quite significantly in the last 20 years. We now have better equipment, better technology, better training, and a better understanding of the surgical techniques."
For many years, he adds: "I really think we weren't treating endometriosis properly – many gynaecologists did not remove the disease, they just ablated (applied heat or laser to) the tip of the iceberg. Proper excision treatment will remove the whole iceberg so, if women are able to have the right treatment with the right person, with the right expertise, in the right unit, it's very likely the outcome is going to be more positive."