British women wait almost nine years on average for endometriosis diagnosis

Women in the UK wait almost nine years for an endometriosis diagnosis, finding many are “dismissed, ignored and belittled”, research has found.

Research from the charity Endometriosis UK found that waiting times for a formal diagnosis of endometriosis have shortened significantly since the outbreak began, increasing to an average of eight years and 10 months, an increase of 10 months on 2020 .

The report, which surveyed 4,371 women, also found that nearly half of those surveyed had visited their GP 10 or more times for symptoms before receiving their diagnosis.

endometriosis is a condition in which tissue similar to the lining of the uterus grows elsewhere, such as the ovaries and fallopian tubes.

It affects about 1 in 10 women, and symptoms vary from person to person.

Sanchia Alasia was diagnosed with the disease in 2010 after experiencing symptoms for 15 years.

As the former mayor of a London borough, she led a busy and productive life, but pain and discomfort were never far away.

“I missed a lot of appointments,” she said.

“I remember missing my nephew’s funeral. I missed dinners, day trips. I won’t even count how much money I lost from things I booked and didn’t get to attend.

“It can be incredibly frustrating,” she added.

Emma Cox, chief executive of Endometriosis UK, said diagnostic problems remain because symptoms are often misunderstood.

“Day after day, without a diagnosis, some people develop real problems with their physical and mental health because they experience severe pain,” Ms Cox said.

If left undiagnosed and untreated, endometriosis can lead to worsening physical symptoms and even permanent organ damage.

The charity’s research shows that women in England and Scotland wait an average of eight years and 10 months for diagnosis, while women in Northern Ireland wait an average of nine years and five months and women in Wales wait nine years and 11 moon.

The survey also found that 52% of respondents had been to an emergency department at least once due to endometriosis symptoms.

Ms Cox said: “We hope this is a real wake-up call for governments and the NHS.

“We would like to see a commitment from the NHS and UK governments to reduce the average time to diagnosis by a year or less by 2030.

“We believe this is possible,” she added.

read more:
Endometriosis: My search for a cure
Woman with severe pain puts off seeing doctor due to ‘gaslighting’
Diagnosed after ‘years of pain’

Minister for the Women’s Health Strategy Maria Caulfield acknowledged that more needs to be done to improve women’s experience of the healthcare system.

“From initial diagnosis to getting the right care and treatment, we must learn from this report,” she said.

“We launched our women’s health strategy to do just that – listen to women’s voices. Endometriosis is a priority area in our strategy so expect to see more in this area.

“Through this strategy, we are working to transform ‘being ignored, ignored and devalued’ into ‘being heard, understood and empowered’.”