Endometriosis UK urges improvement to deteriorating diagnosis times 

Getting a diagnosis for endometriosis now takes almost a year longer than before the pandemic, according to new research published by the charity Endometriosis UK during Endometriosis Action Month 2024 (March). 

A new study shows that diagnosis times in the UK have significantly worsened over the last 3 years, increasing to an average of 8 years and 10 months, an increase of 10 months since 2020. 

This lengthy wait means a delay in accessing treatment, during which the disease may progress, leading to worsening physical symptoms and a risk of permanent organ damage. 

Endometriosis impacts the physical and mental health of 1 in 10 women and those assigned female at birth in the UK from puberty to menopause, although the impact may be felt for life. 

The new report, which is based on a survey of 4,371 people who have received a diagnosis of endometriosis shows: 

  • A rise in diagnosis times in all four nations since 2020, to 8 years and 10 months in both England and Scotland, to 9 years and 5 months in Northern Ireland, and 9 years 11 months in Wales. 
  • Almost half of all respondents (47%) had visited their GP 10 or more times with symptoms prior to receiving a diagnosis, and 70% had visited 5 times or more. 
  • Only 10% of respondents reported that GPs mentioned they suspected endometriosis at either their first or second appointment where symptoms were discussed. 
  • 52% had visited A&E at least once, and fewer than a fifth of those (17%) were referred to gynaecology at their first visit. 26% of respondents visited A&E 3 or more times with symptoms prior to diagnosis. 
  • 20% reported seeing a gynaecologist 10 or more times before being diagnosed. 
  • 78% of people who later went on to receive a diagnosis of endometriosis had experienced one or more doctor telling them they were making a ‘fuss about nothing’ or similar comments and many had the severity of their symptoms questioned by healthcare practitioners.  The number of people reporting this experience has increased from 69% in our 2020 survey.  

Endometriosis UK says that, despite impacting 1.5 million across the UK, Governments are failing to recognise the impact of endometriosis or allocate sufficient resources to diagnosing it, with many healthcare practitioners lacking understanding of the disease. 

Emma Cox, CEO of Endometriosis UK, says: “Taking almost nine years to get a diagnosis of endometriosis is unacceptable. The theme of Endometriosis Action Month 2024 is ‘could it be endometriosis?’. Raising awareness of the symptoms of endometriosis with the general public, along with healthcare practitioners and those in charge of health services, will be a step towards shortening very lengthy waits. 

“Our finding that it now takes even longer to get a diagnosis of endometriosis must be a wake-up call to decision makers to stop minimising or ignoring the significant impact endometriosis can have on both physical and mental health. Now is the time to reverse the trend and make commitments to drive down diagnosis time for endometriosis and other menstrual health conditions.” 

Endometriosis UK’s report contains several recommendations for improving diagnosis times, including: 

  • Calling on the four Governments of the UK to commit to a target of an average diagnosis time for endometriosis of 1 year or less by 2030. 
  • Urging NHS commissioners and providers to urgently drive down gynaecology waiting times. 
  • Making sure all healthcare practitioners receive training on menstrual health and endometriosis awareness. 
  • Asking Governments across the UK to invest in public health education campaigns helping people to recognise the most common endometriosis symptoms. 
  • More investment into research to find the cause of endometriosis, improve treatments and find better ways to diagnose the disease. 

Respondent comments 

The report includes a range of comments from respondents to the survey, such as: 

  • “I was constantly dismissed, ignored and belittled by medical professionals telling me that my symptoms were simply due to stress and tiredness. I persevered for over 10 years desperate for help.” 
  • “When I first went to the GP as a teenager, I was told I was being dramatic and would get used to the period pain I was having.” 
  • “A&E nurses told me that everyone has period pain so take paracetamol and go home.” 
  • “The first gynaecologist I was referred to was exceptionally dismissive – he denied my experience and told me I was ‘probably not in that much pain’ and ‘just having normal periods’.” 

In response to the report, Ranee Thakar, President of the Royal College of Obstetricians and Gynaecologists (RCOG), says: “Endometriosis can have significant impacts on every aspect of womens’ lives – and timely diagnosis is crucial to ensuring that treatment and wider support can be in place to limit the progression of disease and manage symptoms.” 

“The barriers to timely diagnosis of endometriosis and other gynaecological health conditions are complex, but it is clear that more action is desperately needed. We need education and national communications campaigns to support women and girls to recognise their symptoms and feel confident seeking help; we need clinicians across the health service who listen to women and have the skills and expertise to diagnose and treat gynaecological conditions; and we need investment in services to ensure that we have the right equipment and training for healthcare professionals to achieve timely diagnosis.” 

“The length of waiting lists in gynaecology services grew significantly during the COVID-19 pandemic, and grew disproportionately faster than other elective specialties. As a College, we are calling on the Government and the NHS to continue dedicated actions to address waiting lists and ensure fair and equitable recovery of services.” 

In response to the report, the Minister for the Women’s Health Strategy, Maria Caulfield says: “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.” 

“Through the Women’s Health Strategy, we are working to turn dismissed, ignored and belittle into listened to, understood and empowered.” 

*What is endometriosis? 

Endometriosis (pronounced en- doh – mee – tree – oh – sis) is the name given to the condition where cells similar to the ones in the lining of the womb (uterus) are found elsewhere in the body. 

Each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape. 

In the UK, around 1.5 million women and those assigned female at birth are currently living with the condition, regardless of race or ethnicity. Endometriosis can affect you from puberty to menopause, although the impact may be felt for life. 

Symptoms of endometriosis 

Symptoms can vary in intensity in those with endometriosis, and the amount of endometriosis does not always correspond to the amount of pain and discomfort experienced. Not everyone with endometriosis experiences symptoms.  

The classic endometriosis symptoms include: 

  • Pelvic pain 
  • Painful periods that interfere with daily activities  
  • Painful bowel movements 
  • Pain when urinating 
  • Pain during or after sex 
  • Difficulty getting pregnant 
  • Fatigue