Endometriosis Action Month: what you need to know and how to get involved
The condition affects one in 10 women, yet is still widely misunderstood and underdiagnosed
Every March, Endometriosis Action Month brings attention to a condition that affects one in 10 women. This year, the theme is Endometriosis Doesn’t Wait — highlighting the urgent need for faster diagnosis, better care and greater awareness of a disease that is still widely misunderstood.
A new report by Endometriosis UK found that the average time to receive a diagnosis is now nine years and four months, up from eight years in 2020.
For women of colour, that figure rises to 11 years — a two-year gap that reflects well-documented patterns of dismissal, cultural barriers to seeking help, and a healthcare system that, as researchers have noted, has historically centred white, middle-class women in its studies.
The same report found that 83% of respondents were made to feel they were “making a fuss about nothing” by healthcare professionals before they eventually received a diagnosis.
For Muslim women and women of colour, those delays are compounded by deep-rooted stigma around menstruation in many communities, a lack of culturally appropriate health information and structural inequalities within the NHS.
Whether you have been struggling to get answers, are newly diagnosed, or want to support someone close to you, here is a guide to what has happened this March, what is still coming up, and where to find support.
What is endometriosis?
Endometriosis is a chronic condition in which tissue similar to the lining of the womb grows elsewhere in the body, such as on the ovaries, fallopian tubes, bowel or bladder. Unlike normal uterine lining tissue, this tissue has no way to leave the body during menstruation. This can lead to inflammation, scar tissue and severe pain.
Symptoms can include severe period pain, heavy bleeding, pelvic pain outside of menstruation, bowel and bladder problems, fatigue and difficulties conceiving. They can vary widely — from manageable to debilitating — and without timely diagnosis and treatment, the disease can worsen over time.
What has already happened this March?
On 5 March, MPs debated endometriosis and fibroids in Westminster, raising concerns about long diagnosis times and gaps in care. During the debate, the government confirmed that the National Institute for Health and Care Research (NIHR) is funding seven active research awards totalling £7.8 million, including £2.3 million for a study starting in Marcht on the effectiveness of pain management for endometriosis.
At the start of March, Endometriosis UK published its State of Endometriosis Care in the UK report, offering one of the most comprehensive recent looks at diagnosis times and patient experiences. The document was produced in partnership with Cysters, a grassroots charity working to address health inequalities affecting women from ethnic minority backgrounds.
What’s coming up
Hidden in Pain: Endometriosis diagnosis inequalities in ethnically diverse communities
Later this month, Cysters and Endometriosis UK will release a standalone report examining racial disparities in diagnosis. It will form the most detailed analysis yet of how endometriosis diagnosis timelines differ for women from ethnically diverse communities in the UK.
Where to get support
Endometriosis UK
This charity offers a helpline, a nurse support helpline, web chat, and information on local and online support groups across the UK for people living with endometriosis.
Cysters
A community-led charity that specifically focuses 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 that accounts for religious obligations, including guidance on managing conditions such as endometriosis and polycystic ovary syndrome (PCOS) alongside prayer and fasting.
What you can do right now
1in10 Challenge
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This fundraising campaign encourages supporters to create their own challenge themed around the number 10 — from running 10km to doing 10 minutes of squats a day — to raise awareness of the fact that one in 10 women live with endometriosis.
Go Yellow
Organise a Go Yellow! event, where communities, workplaces or a group of friends wear yellow — the international colour of endometriosis awareness — to spark conversations and raise funds for support services and research.
Write to your MP
Write to your MP using Endometriosis UK’s template — it takes two minutes and uses your postcode to identify your representative.
