'A real turning point': Endometriosis advocates meet health minister after success of Endo the Battle campaign
🗣 “This is more than just a medical condition. This is everyone’s business.”
Campaigners have praised a “turning point” in the journey to improve endometriosis care, as they met with a health minister to call for action.
We brought more than 400 stories of your stories to the Department of Health, which were collected as part of our Endo The Battle campaign. We launched the campaign to shine a light on the challenges and barriers those living with the condition face, from getting a diagnosis to accessing healthcare.
Alongside a group of advocates, we presented the experiences to Baroness Merron, Minister for Patient Safety, Women's Health and Mental Health, and discussed what needs to be done for the future of endometriosis care in the UK.
Jodie Hughes, who chairs charity Endo South Coast, said the meeting was a “real turning point”.
She told us: “Being in the room with ministers gave us the chance to ensure that the lived experiences of people with endometriosis were heard directly and clearly.
“Advocates play a crucial role in bridging the gap between policy and reality—we bring the human impact to the table, which is essential if we want to see meaningful, lasting change.”
As a health writer, and someone living with endometriosis, I know firsthand the uphill battle patients experience every step of the way. More than 400 of you shared your experiences with us via our anonymous survey, outlining issues from knowledge gaps within the healthcare sector, to dismissal of symptoms, delays in getting a diagnosis and long waiting lists.
I brought a file containing all of your experiences, which included patients being told the “only way to fix it was pregnancy,” misdiagnosed with IBS, symptoms being blamed on “anxiety and depression”, or left to languish on lengthy waiting lists.
Campaigners at the table included author and educator Jen Moore, Katy Phillips, founder of Endo Buddies, and Endo South Coast’s Jodie Hughes and Chloe Gwinnet, whose twin sister Freya died from complications related to thoracic endometriosis in December 2023.
Others attended the meeting virtually, including advocate Rey, author of Endometriosis and the Knowledge Gap, Sarah Harris and Neelam Heera from Cysters UK and Anna Cooper from the Menstrual Health Project.
Campaigners touched on their personal stories, the research and work they were doing and their enthusiasm to be part of the conversation to help change the future of endometriosis care.
Common themes included symptom dismissal, misinformation, medical misogyny, disparity in care amongst underrepresented communities and long delays to get a diagnosis or access healthcare.
Baroness Merron thanked campaigners for being so open, trusting and honest with their assessments of care around endometriosis and their recommendations to make improvements.
She said she felt "impacted" by the amount of work and commitment campaigners had shown to support other people. Each of the campaigners presented self-funded research and findings, making suggestions on how to work together with the Department of Health and Social Care to improve care.
Baroness Merron said: "This is more than just a medical condition. This is a condition that clearly impacts on every single area of your life. It impacts work life, friends and families and the list continues.
"This is everyone's business. You have spoken about the system and not being heard. The system needs to work around the patient, not the patient around the system."
What is endometriosis?
Endometriosis is a systemic inflammatory condition where cells similar to the lining of the uterus are found elsewhere in the body, which can cause debilitating symptoms.
It takes on average eight years and 10 months for an endometriosis diagnosis in England and Scotland, nine years 11 months in Wales and nine years and five months in Northern Ireland.
Symptoms can include:
- painful periods
- painful bowel movements
- painful urination
- pain during or after sex
- infertility
- chronic fatigue
She stressed that as part of the NHS’ 10 Year Health Plan, there is a "framework for change" with women's health being central to that.
She added: "There is a lot of work that needs to be done. This is the beginning. It's not about waiting 10 years. There are changes we want to make now. It's about changing the way the NHS works."
The Endo the Battle campaign is being spearheaded by health writer Sarah McCann - read her endometriosis story.
If you have been affected by the content of this article or suspect you may have endometriosis, you can find out more at the Menstrual Health Project.