It now takes eight years, on average, to be diagnosed with endometriosis in the UK, according to a new report into the findings of a parliamentary inquiry into the condition. As a result, MPs are calling for urgent action to improve care for those suffering – but why has it taken so long?
At the beginning of the year, an inquiry into endometriosis, a condition where tissue similar to the lining of the womb grows in other places, was launched by the UK government. They intended to investigate the experiences of women who have the condition and reduce the challenges faces by future generations.
Now, eight months later, the results of the inquiry reveal failings in both diagnosis and care – issues that endometriosis sufferers have been shouting about for years.
A report of the findings, which was published today (19 October), shows that the average diagnosis time for endometriosis has not improved over the last decade – it’s worse. On average, it now takes eight years to be diagnosed with this incredibly painful and potentially debilitating condition, despite more women speaking out about and raising awareness of their experience.
So, why is it still taking so long for sufferers to be diagnosed?
It’s certainly not because they aren’t complaining enough. Out of the 10,000 people who responded to the survey and had received an endometriosis diagnosis, 58% said they’d visited their GP with endometriosis symptoms more than 10 times prior to that diagnosis, with 43% visiting doctors in hospital over five times under the same circumstances. 53% had also visited A&E before they were diagnosed.
The report also revealed that post-diagnosis, those with endometriosis aren’t receiving adequate support – 90% said they would have liked access to psychological support but were not offered this.
In response to these findings, the All-Party Parliamentary Group (APPG) on endometriosis has called on the government to take urgent action in order to address the numerous failures that continue to plague the system. They’re asking the government to commit to a number of support measures, including a commitment to reducing average diagnosis times (with a target of 4 years or less by 2025, and a year or less by 2030), ensuring a baseline for diagnosis and introducing compulsory menstrual wellbeing in the school curriculum, so young people are made aware of the signs.
They’ve also called for an investigation into the barriers faced in accessing care from Black, Asian and minority ethnic backgrounds and for action to end the ethnicity and gender gaps in medical research. You can check out the full list of suggested support measures on the Endometriosis UK website.
While this kind of public dialogue is a sign that things might be moving in the right direction, it’s not the first time these kinds of problems have been brought to light. For years, women with endometriosis have been sharing their experiences and calling for action in the face of a failing care system – so why has it taken so long for their voices to be heard?
This frustration has been echoed on Twitter, where people with endometriosis have been responding to the report since its publication this morning.
“While MPs taking notice of endometriosis and the horror it silently causes is good, it doesn’t take away from the fact that women still cannot get a diagnosis for years and years,” broadcast journalist Emma Barnett said. “Why? I will kick off – it took me 21 years to be diagnosed with endometriosis.”
“I am just another angry woman wondering when women’s pain will be taken seriously,” wrote Twitter user @rachembar. “This disease ruins people’s lives and the majority of doctors refuse to acknowledge it. I hope one day we will prioritise people’s quality of life over money.”
“1 in 10 women have it, diagnosis takes many years, often were are disbelieved when we say we are in debilitating pain – until you get a diagnosis then it’s ‘oh yeah, this IS one of the most painful conditions, whoops’,” added Twitter user @cruelfeathers. “Listen to female patients, believe them.”
Although this report is a breath of fresh air for the women who have been fighting for change for so long, it’s an upsetting reminder of the extent to which women’s pain continues to be belittled and silenced.
If one thing’s for sure, this report is just one step in a long list of changes which need to be made in order to ensure that people with endometriosis receive the support they need and deserve.
For more information on endometriosis, and to get support, you can visit the Endometriosis UK website or check out our articles from women with the condition.