New data released by Endometriosis UK has revealed that the average time to receive a diagnosis of endometriosis in the UK has now reached 9 years and 4 months. Alarmingly, this figure has increased from an average of 8 years reported in 2020.
The findings, from a survey by Endometriosis UK, highlight the struggles of individuals seeking diagnosis and management to help reduce the severity of symptoms: 39% of respondents reported needing to visit their GP 10 times or more before endometriosis was suspected. Additionally, 55% of respondents attended A&E with their symptoms, but 46% of these were sent home without treatment.
Endometriosis is a long-term (chronic) condition where tissue similar to the lining of the womb grows elsewhere in the body. It's common, affecting 1 in 10 women. Symptoms vary from person to person and can be severe and debilitating. Common symptoms include; pelvic pain, painful periods that interfere with everyday life, heavy menstrual bleeding and pain during or after sex. Around 1.5 million women in the UK are currently living with endometriosis.
Emma Cox, CEO of Endometriosis UK, said:
“It is unacceptable that those living with endometriosis have to endure years of pain and uncertainty before receiving a diagnosis. Our findings underscore the urgent need not only for increased awareness and understanding of endometriosis and menstrual health among healthcare providers, but for this to be translated into action, with appropriate levels of resources allocated by the NHS to overcome far too long waiting lists and enable access to care where and when it’s needed.
“Endometriosis care has been neglected for too long and the situation is getting worse. Governments across the UK must treat endometriosis as a common, chronic condition that requires systematic action and we want an unequivocal commitment to reduce average diagnosis time to one year or less by 2030.”
Bethany Backhouse, age 28 from Stoke on Trent, was diagnosed with endometriosis in 2017. She said:
"For a long time I was told I was too young to have endometriosis, I was told that my symptoms were just 'painful periods' despite passing out at school due to the pain. It took about six years for me to get a diagnosis and it has had a huge impact on my education, my mental health and my life. I've had to go through medical menopause which was extremely difficult and I'm still experiencing the symptoms. I've had surgery but unfortunately the endometriosis has returned and I'm now on the waiting list for another operation."
Kirsteen Sullivan MP, Chair of the All Party Parliamentary Group on Endometriosis, added:
"Whilst I am appalled by the shocking waiting times across the UK for women to receive a diagnosis for endometriosis, I am regrettably not surprised. For too long, women's health issues have been sidelined, and this must change. Endometriosis can be debilitating and devastating. Anyone suffering from this condition deserves timely and compassionate diagnosis, treatment and care."
Endometriosis UK is calling on all UK governments to commit to reducing the average time for diagnosis to one year or less by 2030. This will need targeted action to reduce waiting lists for gynaecology services, appropriate levels of funding and resources, mandatory and effective endometriosis and menstrual health training for healthcare practitioners, menstrual health education in schools and an acknowledging endometriosis as a common chronic condition that must be treated as a long term condition by the NHS.
