A new study reveals that women in the UK are waiting nearly nine years for an endometriosis diagnosis, and having to make repeated visits to their GP — often more than 10 times — before being diagnosed.

The study by Endometriosis UK, which surveyed over 4,000 people with the condition, has found that waiting times for a diagnosis have deteriorated in the past three years. It now takes an average of eight years and 10 months for diagnosis (up 10 months since 2020), with research showing that health professionals are often dismissing or minimising symptoms.

The survey has found that nearly half of respondents (47%) had visited their GP 10 or more times with symptoms before being diagnosed, and 70% had visited five times or more. Only 10% reported that GPs had mentioned or suggested endometriosis at either their first or second appointment where symptoms were discussed.

Endometriosis, a condition where tissue similar to the womb lining grows elsewhere, such as the ovaries and fallopian tubes, affects 10% of women from puberty to menopause. This is more than 1.5 million women in the UK, according to Endometriosis UK; a similar number to those with diabetes.

The disease has a wide range of symptoms, including painful periods, pain when urinating, painful bowel movements, and pain during or after sex, and can affect fertility.

While there’s no cure for endometriosis, there are several treatments that can relieve symptoms, including painkillers, hormonal contraceptives or medicines known as gonadotrophin-releasing hormone (GnRH) analogues.

The long delays to diagnosis means increasingly women are dealing with progressed disease, more severe symptoms, and potential organ damage and impacted fertility. The issue has led to the inclusion of endometriosis and gynaecological problems in the government’s women’s health strategy, launched in 2022.

In response to this new report, the minister for the women’s health strategy, Maria Caulfield, said we must “listen to women”.

 “More must be done to improve women’s experiences of the healthcare system, and for those women suffering from endometriosis we have a long way to go. From getting an initial diagnosis to getting the right care and treatment, we must learn from this report.

“We launched our women’s health strategy to do just this, listen to women. Endometriosis is a priority area within our strategy, so expect to see more in this space. In addition, we are rolling our women’s health hubs across the country to support more women with specialist care required with this condition.”

Endometriosis UK is calling on governments to commit to a target of an average diagnosis time of a year or less by 2030, while urging NHS commissioners to urgently reduce gynaecology waiting times.

Barriers to diagnosis

Driving these long diagnosis times is a lack of understanding within the medical community (and beyond) that severe pelvic pain isn’t normal for women, and a tendency to normalise or dismiss symptoms.

As the symptoms of endometriosis are very similar to other common conditions, diagnosing endometriosis can be challenging. It’s only definitively diagnosed by a laparoscopy — an operation in which a camera (a laparoscope) is inserted into the pelvis via a small cut near the navel. Usually this is performed after a physical examination and medical imaging.

According to the Royal College of Obstetricians and Gynecologists, less than 3% of medical research funding in the UK is focused on women-specific diseases like endometriosis. This highlights the dire gender health gap that still exists in the UK— the largest among G20 countries — a theme that’s explored in ITN Business’ upcoming International Women’s Day programme, Women’s Health: The Future We Deserve (launching March 8th).

The programme also features organisations and individuals that are actively working to challenge assumptions, positively address women’s health issues, close the gender health gap, and improve health outcomes for women.

Explore more here.