Transforming narratives: building a new legacy for endometriosis 

A legacy of willful ignorance and a pervasive narrative of “normalisation” continue to shape the lives of millions of girls and women with endometriosis, who struggle with debilitating, life-altering pain, delayed diagnosis, and suboptimal care. Transforming this legacy is not just a health priority; it is a moral imperative and a stride toward more equitable healthcare.

 

As communicators, we are often called to develop narratives. Narrative for brands, products, creative campaigns. But what if the narrative to rewrite is about a disease?

 

Endometriosis is an incurable condition that affects the physical and mental health of 1 in 10 girls and women of reproductive age.[1] It involves the growth of endometrial-like tissue outside the uterus, which creates adhesions, lesions, or tumours around organs, ligaments, or nerves. About 85% of chronic pelvic pain and 40% of infertility cases in women are due to endometriosis.[2] The impact on quality of life is profound, with two in three women reporting missed work or school days,[3] along with high levels of anxiety and depression. In the UK, one in six women with the condition has to leave their workplace.[4]

 

Yet, the narrative surrounding endometriosis normalises its pain, leading to delayed diagnoses—sometimes taking up to 10 years.[5] Women also frequently endure misdiagnoses, often being told their symptoms are psychological.[6] This systemic failure is compounded by a lack of research funding and policy attention despite endometriosis affecting as many women as diabetes. In 2022, it received 60 times less research funding than diabetes, perpetuating knowledge gaps and inadequate care.[1]

Endometriosis advocacy is largely limited to self-help groups rather than organised patient advocacy, further limiting health and  prioritisation of research agendas.

 

To transform this legacy, a radical shift in narrative is needed—one driven also by stronger advocacy and effective communication. As communicators, we can leverage the pivotal role of traditional and social media in changing perceptions and building supportive communities.

 

Working in partnership with our clients, we have raised awareness and understanding of endometriosis by counteracting biases, socialising relevant data, validating women’s experiences and amplifying their voices. We’ll continue to work in this direction, to foster empathy and encourage a more supportive healthcare environment.

 

It’s not only what we read about endometriosis, pain, menstruation, and women’s health. It’s also how we talk about it. Helping doctors and patients alike realise how implicit bias may affect their implicit biases, emphasising that these are habits, not moral failings, and can be changed with conscious effort. For doctors, for instance, using open-ended questions could help elicit less biased responses.

 

Diagnostic delays and the knowledge gap surrounding endometriosis are not just a failure of medical systems but a reflection of societal biases that minimise women’s pain and health concerns. Reframing the narrative around endometriosis is not merely about raising awareness; it’s about valuing the experiences and health of the daughters, friends and colleagues affected. Doing exactly this with a team of passionate colleagues at Weber Shandwick is not merely working; it’s infusing it with significance and purpose. Narratives can transform the context in which solutions and values are discussed. The legacy of endometriosis should be one of understanding, support and action—driven by a commitment to equitable healthcare for all. This is part of The Weber Shandwick Collective: Women’s Health initiative to acknowledge our responsibility in seeding new narratives and addressing gender disparity in health communications, especially concerning issues with challenging diagnoses like endometriosis.

 

For more information about our Women’s Health offering, visit: https://webershandwick.co.uk/womens-health

 

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[1] WHO endometriosis factsheet, available at https://www.who.int/news-room/fact-sheets/detail/endometriosis (accessed February 2025)

[2] Instituto Nacional de Perinatología (INPER). 2022a. “14 de marzo: Día Mundial de la Endometriosis.” Facebook post, March 14. Accessed March 14, 2022. https://www.facebook.com/133416716691261/posts/5462273837138829/?d = n(open in a new window).

[3] Rasha A. Al-Lami, Shaden A. Taha, Randa J. Jalloul, Hugh S. Taylor, Women with endometriosis in the United States: National Survey of Family Growth, 2011–2019, Journal of Endometriosis and Uterine Disorders, Volume 8, 2024,100081,ISSN 2949-8384, https://doi.org/10.1016/j.jeud.2024.100081.

[4] https://www.endometriosis-uk.org/endometriosis-workplace

[5] B. Swift, B. Taneri, C. M. Becker, et al., “Prevalence, Diagnostic Delay and Economic Burden of Endometriosis and Its Impact on Quality of Life: Results From an Eastern Mediterranean Population,” European Journal of Public Health 34, no. 2 (2024): 244–252.

[6] Bontempo AC, Mikesell L. Patient perceptions of misdiagnosis of endometriosis: results from an online national survey. Diagnosis (Berl). 2020 May 26;7(2):97-106. doi: 10.1515/dx-2019-0020. PMID: 32007945.

[7]Ellis, K., Munro, D. & Clarke, J. Endometriosis Is Undervalued: A Call to Action. Front. Glob. Womens Health 3, 902371 (2022).