October 30, 2026
A Landmark Win for Endometriosis Research
Patient Voices Finally Shape the Global Research Agenda
Welcome back to Fact Friday. Most weeks, we break down a single piece of clinical or biological research. This week we are doing something a little different, because the news itself is genuinely historic: for the first time since global endometriosis research priorities began in 2008, the official list now includes priorities generated by social scientists, and by patients themselves.
The new priorities have just been published in The Lancet Obstetrics, Gynaecology and Women’s Health, produced by the World Endometriosis Society (WES) and the World Endometriosis Research Foundation (WERF). They matter more than they might first appear, because lists like this quietly shape what gets studied, what gets funded, and what clinicians are taught, for years at a time.
What Is a Global Research Priorities List, and Why Does It Matter?
Every few years, WES and WERF bring together researchers, clinicians, and increasingly patients, to agree on a short list of the questions that matter most in endometriosis research. The first list was produced in 2008, with further updates in 2011, 2014, and 2017. These are not just academic wish lists. Research funders use them to decide which grant applications to prioritise, journals use them to judge what is worth publishing, and policymakers use them to decide where healthcare resources should go. In other words, what makes it onto this list has a real, practical effect on what research actually gets done over the following decade.
That makes it significant that, until now, every single one of those priorities had been generated through purely clinical or biomedical processes. Questions about diagnosis, surgery, hormone treatment, and biological mechanisms have always had a seat at the table. Questions about lived experience, discrimination in care, and the social and psychological side of the disease had not.
What Changed This Time
This year, the priority-setting chairs, Krina Zondervan and Paul Yong, took the step of directly inviting a social science network, the Social Endometriosis reEarch Network, known as SEEN, to help address this gap. SEEN worked with its own membership, patients, carers, and researchers with an interest in the social and psychological dimensions of endometriosis, to generate and rank a set of priorities, and then submitted their top five to the main global process.
The result: six of SEEN’s proposed priorities made it into the final published list of fifty. They are, in the network’s own words:
- Identify and address barriers to diagnosis and care for historically marginalised groups
- Tailor patient-reported outcome measures to the experiences and needs of marginalised groups
- Deconstruct historical legacies, medical myths, and intersectional biases that perpetuate inequitable care
- Assess endometriosis’ impact across the life course, from menarche to post-menopause
- Identify and implement the most effective strategies to improve healthcare professionals’ practice, knowledge, and skills, including anti-bias policies
- Integrate the full range of social science evidence and expertise into endometriosis research and care
According to those involved, the published correspondence also reflects this shift more broadly. It explicitly calls for “multidisciplinary approaches to endometriosis research, including the full range of social science methodologies,” such as qualitative research, and names “identifying and addressing barriers to diagnosis and care in historically marginalised groups” as a high priority in its own right.
What These Priorities Actually Mean, in Plain Language
Some of the language above is drawn from academic and policy writing, so it is worth unpacking what each priority is actually asking for.
| Priority (in short) | What it actually means |
|---|---|
| Diagnostic barriers | The long delay to an endometriosis diagnosis is not evenly spread. Black, Asian and other minoritised patients, disabled patients, LGBTQ+ patients, lower income patients and those in under-resourced health systems often face even longer delays and more dismissive care. This priority asks researchers to study why, and what can fix it. |
| Fairer outcome measures (PROMs) | A PROM is a standard questionnaire used to measure how a patient is really doing, in their own words. Many existing ones were built using narrow patient groups. This priority calls for them to be rebuilt so they reflect marginalised patients too. |
| Naming medical bias and myths | This priority names the specific historical myths that have shaped how endometriosis gets dismissed or minimised, and studies how they interact with race, class, disability and other forms of bias together, not one at a time. |
| Impact across the life course | Menarche means a person’s first period. This priority pushes back on the idea that endometriosis is only a ‘reproductive years’ condition, calling for research from adolescence right through to, and beyond, menopause. |
| Clinician training and anti-bias policy | Research into what actually works to improve how clinicians diagnose and treat endometriosis, including specific policies to reduce bias in who gets listened to and believed. |
| Integrating social science | A formal, structural place for qualitative research, the kind that explores people’s experiences and context in depth, alongside laboratory and clinical science, rather than as an optional extra. |
Why This Matters for People Living With Endometriosis or Adenomyosis
If you have ever felt that your experience of endometriosis was shaped by more than just the biology of the disease, by how seriously you were taken, how quickly you were believed, or how well the healthcare system around you actually worked for someone like you, this is the first global research priorities list to formally say that those factors are worth serious scientific attention too.
Practically, this should, over time, encourage more funding for research into diagnostic delay among marginalised groups, better tools for capturing what different patients actually experience, and more structured efforts to train healthcare professionals out of the biases that contribute to people being dismissed or disbelieved. None of that happens overnight, but having it named as a global priority is the first necessary step toward it happening at all.
It is also, simply, a significant moment of recognition. The priorities on this list came directly from a patient and social science community being invited in, rather than being left out, and that invitation, and the work members put into it, turned into six concrete, published priorities that researchers and funders around the world are now expected to take seriously.
Important Caveats
As with any Fact Friday, it is worth being clear about what this news does and does not mean. A research priorities list is exactly that, a list of priorities for future research, not a new treatment, a new diagnostic test, or a change to clinical guidelines in itself. Its influence depends on researchers, universities, and funding bodies actually choosing to act on it over the coming years, which is precisely why the correspondence explicitly asks people to cite these priorities in grant applications, papers, and conversations with clinical colleagues, the more it is cited and used, the more real-world effect it will have.
It is also worth noting that this is one list, shaped by the particular researchers, clinicians, and patient representatives involved in this round of the process. It is a meaningful step toward broader, more representative research, not a finished, complete picture of every gap in endometriosis knowledge.
Key Takeaways
- For the first time since the list began in 2008, the new global endometriosis research priorities, published in The Lancet Obstetrics, Gynaecology and Women’s Health, include priorities generated by social scientists and patients.
- A social science network called SEEN, the Social Endometriosis reEarch Network, was invited by the priority-setting chairs to address the previous absence of social science from the 2017 list, and worked with its membership to generate and rank priorities.
- Six priorities shaped by SEEN’s membership made it into the final published list of fifty, covering diagnostic barriers for marginalised groups, fairer patient-reported outcome measures, bias in care, impact across the whole life course, and clinician training.
- These priorities are expected to influence what research gets funded and studied worldwide over the coming years, but only if they are actively cited and used by researchers, funders, and clinicians.
- This is one step in an ongoing process, not a finished picture, but it is a genuinely historic recognition that lived experience and social science belong in endometriosis research.
Conclusion
It is rare that a Fact Friday gets to report good news of this scale. For years, many of you have described feeling unheard, dismissed, or reduced to a set of scans and hormone levels, with little room for the social and psychological reality of living with this disease. This list is a sign that the global research community is beginning, formally and publicly, to agree. A heartfelt thank you to everyone in our community and beyond who took part in generating and ranking these priorities. This is a collective achievement, and one worth celebrating.
Source
World Endometriosis Society (WES) and World Endometriosis Research Foundation (WERF). Global endometriosis research priorities, correspondence chaired by Krina Zondervan and Paul Yong, with contributions from SEEN, the Social Endometriosis reEarch Network. The Lancet Obstetrics, Gynaecology and Women’s Health, 2026. Full text: https://www.thelancet.com/journals/lanogw/article/PIIS3050-5038(26)00267-0/abstract
This article summarises one published announcement and correspondence for general information and awareness only. It is not medical advice. If anything in this article resonates with your own health or care experience, please speak with your GP or specialist, who can take your full individual circumstances into account.
