Endometriosis UK report gathers insight into diagnosis experiences

A new report launched by charities Endometriosis UK and Cysters highlights inequalities in endometriosis diagnosis times for patients from ethnically diverse communities across the UK. The report – Disbelieved, Dismissed, Delayed: Endometriosis Diagnosis Inequalities in Ethnically Diverse Communities – has been published during Endometriosis Awareness Month. It draws on insights from over 500 people from ethnically diverse communities living with the disease, alongside supplementary interviews.

The research found that:  

• People from ethnically diverse communities wait on average almost two years longer for an endometriosis diagnosis than the UK average.
• Patients from ethnically diverse backgrounds wait more than twice as long between seeing a gynaecologist and being diagnosed with endometriosis.
• More than 6 in 10 believed their ethnicity either played a role in their diagnosis, proved a barrier to diagnosis, or was the subject of assumptions by healthcare practitioners.
• Just 1 in 10 believed healthcare providers are culturally sensitive.

Myths, assumptions and gaslighting

The report highlights the real-life experiences behind the data. Responses highlighted issues including: racist myths and assumptions, and gaslighting, dismissal and disbelief from healthcare professionals. Normalisation of pain, and feeling that they were treated differently from white patients was also listed. 

Emma Cox, the CEO of PIF member Endometriosis UK, said: "Throughout this report, racial bias has been highlighted as a key concern. Governments must tackle racial bias as a priority and ensure mandatory training is delivered across the NHS workforce."

Call for action

The report recommends:

• All UK Governments commit to a target of an average of year or less for endometriosis diagnosis by 2030, including targets to end inequalities in outcomes.
• Increased investment and funding for research to ensure balanced representation.
• Improved and appropriate messaging and communications on hormonal management options.
• Ensuring equitable access to services, including specialist endometriosis centres, and improved specialist capacity.
• Ensuring the NHS workforce is equipped to understand and respect the needs of those from ethnic diverse communities and that services are set up to reflect these needs.

Emma Cox adds: "This must be the start of the conversation, not the end, and we look forward to working with Governments and NHS’s in each nation to ensure that these recommendations become a reality.”

Read the full report on the Endometriosis UK website here.