FEMALES are waiting almost 9 years for an endometriosis diagnosis, and feel their symptoms are commonly dismissed by healthcare professionals, according to new research from Endometriosis UK. The study, highlighting the lengthy delay, aims to raise awareness amongst healthcare professionals and health services this Endometriosis Awareness Month (March 2024). With time to diagnosis in the UK increasing to an average of 8 years and 10 months, there are concerns that delays in accessing treatment may allow the disease to progress, resulting in worsening symptoms, and an increased risk of permanent organ damage.
Data was gathered from a 2023 survey of 4,371 people who had received an endometriosis diagnosis from a healthcare practitioner in the UK. These were compared to a similar survey conducted in December 2020, and the All-Party Parliamentary Group (APPG) on Endometriosis report published in October 2020.
The report shows a rise in diagnosis times across all countries in the UK since 2020, with averages of 8 years 10 months in England and Scotland, 9 years and 5 months in Northern Ireland, and 9 years 11 months in Wales. Notably, 47% of respondents had visited their general practitioner 10 or more times, but only 10% of general practitioners talked about suspected endometriosis at either the first or second appointment.
While 52% sought care at Accident and Emergency, only 17% were referred to Obstetrics and Gynaecology during their initial visit. Additionally, 20% reported seeing a gynaecologist 10 or more times before diagnosis. Finally, 78% felt a healthcare professional had questioned the true severity of their symptoms, a rate that had increased from 69% in the 2020 survey, with respondents reporting they were told they were “being dramatic, and would get used to the period pain” they were experiencing.
Emma Cox, CEO of Endometriosis UK, describes the current diagnosis time as “unacceptable,” and suggests that raised awareness of endometriosis among the public, healthcare professionals, and those in charge of health services would be a step in the right direction. The report makes several recommendations, including calling on the four governments of the UK to commit to a target of 1 year for the average endometriosis diagnosis by 2030; increased training for all healthcare professionals on menstrual health and endometriosis; and more investment into endometriosis research.
