Women in Britain are waiting almost nine years to be diagnosed with endometriosis, research has found
Women in Britain wait almost nine years for an endometriosis diagnosis, according to research showing health professionals often minimize or dismiss symptoms.
The research from the charity Endometriosis UK shows that waiting times for a diagnosis have worsened significantly over the past three years, rising to an average of eight years and ten months, an increase of ten months since 2020. In Scotland, the average diagnosis time has increased by four years . months.
The report, based on a survey of 4,371 people who received a diagnosis, shows that 47% of respondents had visited their GP ten or more times with complaints before the diagnosis was made, and 70% five or more times.
Endometriosis UK CEO Emma Cox said: “It takes almost nine years to be diagnosed with endometriosis. Our finding that it now takes even longer to be diagnosed with endometriosis should be a wake-up call for decision makers to stop minimizing or ignoring the significant impact that endometriosis can have on both physical and mental health.”
Endometriosis is a condition in which tissue similar to the uterine lining grows elsewhere, such as the ovaries and fallopian tubes, and can affect fertility. Symptoms include painful periods, painful bowel movements, painful urination and pain during or after sex. It is thought to affect around one in ten women of childbearing age.
There are treatments, including hormone medications and surgery, but lengthy delays in diagnosis are an ongoing problem that has led to endometriosis and gynecological problems being included in the women’s health strategy, which was launched in 2022.
However, the latest evidence shows that waiting times have worsened. Early diagnosis is important because the disease can worsen, leading to more severe physical symptoms and organ damage and limiting the ability to make informed choices that could affect fertility.
Only 10% of respondents said GPs had indicated they suspected endometriosis during their first or second appointment where symptoms were discussed. More than half had been to the emergency department at least once and 17% of these were referred to gynecology on the first visit. The findings were compared with a similar study conducted in 2019-2020 before the Covid pandemic.
The report includes examples of patient experiences, with many being told their pain was “normal”.
One said: “I was constantly rejected, ignored and belittled by medical professionals who told me my symptoms were simply due to stress and fatigue. I held on for over a decade, desperate for help.” Another said she was told she was “being dramatic” after going to her GP with painful periods as a teenager. Another said: “A&E nurses told me everyone has period pain so take paracetamol and go home.”
Commenting on the report, Women’s Health Strategy Minister Maria Caulfield said: “More needs to be done to improve women’s experiences of the healthcare system, and for those women suffering from endometriosis we still 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 exactly this: listen to women. Endometriosis is a priority area within our strategy, so expect to see more in this area. In addition, we are rolling out our women’s health centers across the country to support more women with the specialist care needed for this condition.”
An inherent challenge is that endometriosis can currently only be diagnosed by laparoscopy. The symptoms also vary between people and overlap with other conditions, meaning it’s not something a GP can definitively identify. However, Endometriosis UK is calling on governments to adopt an average diagnosis time of one year or less by 2030 and urging NHS commissioners and providers to urgently reduce waiting times for gynecology.
The Royal College of Obstetricians and Gynecologists has previously said that waiting times for gynecology have increased disproportionately during the pandemic. Commenting on the latest report, President Ranee Thakar said: “The barriers to timely diagnosis of endometriosis and other gynecological health problems are complex, but it is clear that more action is urgently needed.
“We need education and national communications campaigns to help women and girls recognize their symptoms and seek help with confidence; we need doctors across healthcare who listen to women and have the skills and expertise to diagnose and treat gynecological conditions; and we need investment in services to ensure we have the right equipment and training for healthcare professionals to provide timely diagnosis.”