The time it takes to get an endometriosis diagnosis is one of those figures that gets held up time and time again in conversations about the gender health gap. Back in 2020, a massive inquiry launched by the UK government brought the issue to the forefront, with the results highlighting that the waiting times women with endometriosis faced when seeking treatment had worsened.

It’s been four years since that inquiry, and while healthcare efforts have been stretched due to the pandemic, you’d hope that some progress had been made for women dealing with this debilitating condition. However, according to new research by the charity Endometriosis UK, average waiting times for an endometriosis diagnosis haven’t only not improved, they’ve become worse – again.

The research, which was based on a survey of over 4,731 people who have received a diagnosis, shows that average waiting times have grown by 10 months since 2020, meaning that women now wait, on average, eight years and 10 months before their symptoms are labelled. 

Almost half of the survey’s respondents said they had visited their GP 10 or more times with their symptoms before receiving a diagnosis, while 70% said they’d visited at least five times and 78% said they’d experienced one or more doctor telling them they were making a “fuss about nothing” (or similar dismissive comments). Many also reported having the severity of their symptoms questioned.

While the mental health impact of these kinds of experiences cannot be understated, delays in diagnosis can also lead to an increased physical risk if the disease progresses, an outcome that can lead to even worse physical symptoms and a risk of permanent organ damage.

The report published as part of Endometriosis Action Month contains a series of recommendations for improving diagnosis times. Endometriosis UK has also called on the UK government and each devolved legislature to commit to a target of an average diagnosis time for endometriosis taking one year or less by 2030.  

In a statement, Emma Cox, CEO of Endometriosis UK, said it was “unacceptable” that women were waiting so long to receive the help and support they need.

“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,” she said. “Now is the time to reverse the trend and make commitments to drive down diagnosis time for endometriosis and other menstrual health conditions.”

Endometriosis affects one in 10 women across the UK and can cause symptoms ranging from painful and heavy periods to fertility issues and pain when peeing or pooing. There are several different types and stages of endometriosis, and the cause is not yet fully understood.

Currently, the only way to diagnose endometriosis is via a laparoscopy – which is why GPs cannot definitively diagnose someone with the condition. If they suspect endometriosis, they can recommend treatments and, if these do not work, provide a gynaecology referral. A gynaecologist can order further tests, including a laparoscopy, to diagnose the condition.

However, long waiting times to see a gynaecologist – which increased disproportionately during the pandemic due to the routine dismissal of women’s health issues, according to The Royal College of Obstetricians and Gynaecologists (RCOG) – can mean receiving a diagnosis is often a long and arduous process once you make it past your GP.

It’s for this reason that Endometriosis UK is also calling on NHS commissioners and providers to drive down gynaecology waiting times and recommending that all healthcare practitioners receive training on menstrual health and endometriosis awareness to ensure symptoms are identified earlier.

Responding to the report, Ranee Thakar, president of the RCOG, said it was clear that “more action” is needed to address the amount of time women are waiting to receive help.

“Endometriosis can have significant impacts on every aspect of women’s 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,” she said.

Thakar continued: “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 a timely diagnosis.”

Maria Caulfield, minister for the women’s health strategy, said: “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 out our Women’s Health Hubs across the country to support more women with the specialist care required for this condition. Through the women’s health strategy, we are working to turn ‘dismissed, ignored and belittled’ into ‘listened to, understood and empowered’.” 

Images: Getty