Women in the UK wait almost nine years for a diagnosis of endometriosis, research has found, with health professionals often minimizing or ignoring symptoms.
Research from the charity Endometriosis UK shows that waiting times for diagnosis have shortened significantly over the past three years, with the average waiting time increasing to eight years and 10 months, an increase of 10 months on 2020. In Scotland, the average time to diagnosis has increased by 4 months. months.
The report, based on a survey of 4,371 confirmed patients, showed that 47% of the respondents had visited a doctor 10 or more times for symptoms before diagnosis, and 70% had visited the doctor 5 or more times.
Emma Cox, chief executive of Endometriosis UK, said: “It’s unacceptable that it took almost nine years to get a diagnosis of endometriosis. We found The fact that endometriosis is now taking longer to diagnose must be a wake-up call for policymakers to stop minimizing or ignoring the significant impact of endometriosis on physical and mental health.”
endometriosis is a disease in which tissue similar to the lining of the uterus grows in other places, such as the ovaries and fallopian tubes, potentially affecting fertility. Symptoms include painful periods, painful bowel movements, pain during urination, and pain during or after sexual intercourse. It is thought to affect around 1 in 10 women of childbearing age.
There are treatments, including hormonal drugs and surgery, but long delays in diagnosis have been an ongoing problem, prompting the inclusion of endometriosis and gynecological problems in the government’s women’s health strategy to be launched in 2022.
However, the latest evidence suggests waiting times have worsened. Early diagnosis is important because the disease may progress, causing more severe physical symptoms and organ damage, and limiting the ability to make informed choices that may affect fertility.
Only 10% of respondents reported that their GP mentioned suspicion of endometriosis during their first or second visit to discuss symptoms. More than half visited the Accident and Emergency Department at least once, with 17% referred to gynecology at the first visit. The findings were compared to a similar survey conducted in 2019-20, before the COVID-19 pandemic.
The report includes examples of patients’ experiences, with many being told their pain was “normal”.
One said: “I was regularly dismissed, ignored and belittled by medical professionals who told me my symptoms were simply due to stress and fatigue. I have been desperately seeking help for over a decade.” Another A woman says she was told she was “too dramatic” after visiting her GP for menstrual pain as a teenager. Another said: “The A&E nurse told me that everyone gets period pain so take paracetamol and go home.”
Responding to the report, Minister for Women’s Health Strategy Maria Caulfield said: “More must be done to improve women’s experience of the healthcare system, and for those living with endometriosis, we There is still a long way to go. From 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 that, to listen to women’s voices. Endometriosis is a priority area in our strategy, so expect to see more in this area. In addition, we are Establish women’s health centers across the country to provide specialized care support to more women suffering from this disease.”
An inherent challenge is that endometriosis can currently only be diagnosed through laparoscopy. The symptoms also vary from person to person and overlap with other conditions, meaning GPs cannot clearly identify them. However, Endometriosis UK is calling on governments to commit to an average time to diagnosis of one year or less by 2030, and urging NHS commissioners and providers to urgently reduce gynecological waiting times.
The Royal College of Obstetricians and Gynecologists has previously said gynecological waiting times have increased disproportionately during the pandemic. Responding to the latest report, its chair Ranee Thakar said: “The barriers to timely diagnosis of endometriosis and other gynecological health conditions are complex, but there is clearly an urgent need for more action.
“We need education and national communication campaigns to support women and girls to recognize their symptoms and feel confident to seek help; We need clinicians across the health service to listen to women and have the skills and expertise to diagnose and treat gynecological conditions; We need to invest in services to ensure we have the right equipment and training for healthcare professionals to enable timely diagnosis.”
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