Endometriosis: a misdiagnosed condition affecting 1.5 million

Emma Cox

CEO, Endometriosis UK

Why are so many told that crippling period and pelvic pain is normal? Women are waiting an average of eight years to get diagnosed with common condition.

“You’d better get used to this – this is what it’s like being a woman!” Harriet will never forget those words, directed at her with a laugh by a member of school staff while waiting for her mum to pick her up, in tears and throwing up from another painful period.

It wasn’t until her 20s that Harriet was eventually diagnosed with endometriosis, a common and sometimes debilitating gynaecological disease affecting one in 10 women and those assigned female at birth from puberty to menopause – that’s 1.5 million in the UK today.

What is endometriosis?

Endometriosis is where cells similar to those in the lining of the womb grow in other places – most commonly elsewhere in the pelvic cavity. These cells react in the same way to those in the womb during the menstrual cycle, building up and then breaking down and bleeding. Unlike the cells from the womb which leave the body as a period, this blood cannot escape.

The symptoms experienced vary depending on where the endometriosis is growing and can include chronic pelvic pain, painful periods, painful bowel movements, pain urinating, pain during or after sex, fatigue and difficulty getting pregnant.

Endometriosis is where cells similar to those in the lining of the womb grow in other places.

Improved diagnosis is critical

While the condition affects everyone differently, at Endometriosis UK we hear lots of stories like Harriet’s. Unbelievably, her long wait for diagnosis is nothing unusual – according to 2020 research by the All-Party Parliamentary Group on Endometriosis, the average time from onset of symptoms to diagnosis in the UK is eight years.

During those years, 58% visit their GP 10 times or more with symptoms and a quarter visit A&E multiple times. Numerous women are told their symptoms are normal or that the pain “is all in their head” and that they just have to live with it. Many of those with endometriosis describe receiving the diagnosis is initially a relief – they have been believed, it’s not all in their head. However, treatment options are limited and not effective for everyone and with no known cure, that relief is often short-lived.

Ending the silence

Endometriosis UK is fighting to end the silence around endometriosis and to end the pain endometriosis may cause. Our support network was used by 50,000 people last year – a number we want to keep growing and we are campaigning for improved diagnosis and treatment and increased research into the condition.