The condition affects one in 10 women, yet is still widely misunderstood and underdiagnosed
Every March, Endometriosis Action Month focuses attention on a condition affecting one in 10 women. This year’s theme, Endometriosis Doesn’t Wait, underscores the critical necessitate for quicker diagnoses, improved care, and increased awareness of this often-misunderstood disease.
A recent report from Endometriosis UK reveals the average time to diagnosis is now nine years and four months, an increase from eight years in 2020.
For women of colour, this timeframe extends to 11 years – a two-year gap that reflects existing patterns of dismissal, cultural barriers to seeking support, and a healthcare system that has historically centred research on white, middle-class women.
The same report found that 83% of respondents felt their concerns were dismissed by healthcare professionals before receiving a diagnosis.
For Muslim women and women of colour, these delays are worsened by stigma surrounding menstruation, a lack of culturally sensitive health information, and inequalities within the NHS.
Here’s a guide to what’s happening this March, and where to find support.
Understanding Endometriosis
Endometriosis is a chronic condition where tissue similar to the womb’s lining grows outside of it – on the ovaries, fallopian tubes, bowel, or bladder. This tissue behaves like normal uterine lining during menstruation, causing inflammation, scarring, and severe pain.
Symptoms include severe period pain, heavy bleeding, pelvic pain outside of menstruation, bowel and bladder problems, fatigue, and difficulties conceiving. Symptoms can range from manageable to debilitating, and can worsen without timely diagnosis and treatment.
Recent Developments and Upcoming Events
On 5 March, MPs debated endometriosis and fibroids, raising concerns about long diagnosis times and gaps in care. The government confirmed the National Institute for Health and Care Research (NIHR) is funding seven research awards totalling £7.8 million, including £2.3 million for a study on pain management for endometriosis.
At the start of March, Endometriosis UK published its State of Endometriosis Care in the UK report, offering a comprehensive look at diagnosis times and patient experiences. The report was created in partnership with Cysters, a charity addressing health inequalities for women from ethnic minority backgrounds.
Racial Disparities in Diagnosis
Later this month, Cysters and Endometriosis UK will release a report examining racial disparities in diagnosis. It will provide detailed analysis of how endometriosis diagnosis timelines differ for women from ethnically diverse communities in the UK.
Where to Find Support
Endometriosis UK
This charity offers a helpline, nurse support, web chat, and information on support groups across the UK.
Cysters
A community-led charity focusing on the menstrual, mental, and reproductive health of women from ethnic minority backgrounds.
Taahirah
This platform is designed for Muslim women, providing faith-sensitive health information, including guidance on managing endometriosis and polycystic ovary syndrome (PCOS) alongside religious obligations.
Take Action Now
1in10 Challenge
This fundraising campaign encourages supporters to create challenges themed around the number 10 – such as running 10km or doing 10 minutes of squats daily – to raise awareness of endometriosis.
Go Yellow
Organise a Go Yellow! event, where communities, workplaces, or groups wear yellow – the international colour of endometriosis awareness – to spark conversations and raise funds.
Write to your MP
Leverage Endometriosis UK’s template to write to your MP – it takes two minutes and uses your postcode to identify your representative.
Frequently Asked Questions
What causes endometriosis?
The exact cause is unknown, but it’s likely a combination of genetic and environmental factors.
Is endometriosis curable?
There is currently no cure, but symptoms can be managed with medication, surgery, and lifestyle changes.
Can endometriosis affect fertility?
Yes, endometriosis can make it more hard to get pregnant, but many women with endometriosis can still conceive.
