The Social ScienEs Endometriosis Network (SEEN) is thrilled to share a newsletter reflective of the current scene of engaging social science and humanities endometriosis research!

Opportunities & Events

· Call for submissions – edited volume & future special issue journal, Reframing Endometriosis: Power, Politics and Potential Futures

• Sick Lit: Endometriosis Edition – an ongoing virtual series
• 7^th European Endometriosis Congress – Abstracts due Dec 20^th

Membership Matters 

• SEEN launches website with (free) Members’ Directory

Latest Research

• Endo Violence Magazyn #02 Spotlights Endometriosis Injustice with Art
• Publication Highlights

Opportunities & Events

*Please circulate widely* (Call attached)

Building on the success of the British Academy-Wellcome Trust conference, ‘Reframing Endometriosis: Power, Politics and Potential Futures,’ we are excited to announce this invitation for chapter proposal submissions for an edited volume. Note: an additional, separate proposed special issue in a medical journal announcement is forthcoming (see more info below).

Background: Endometriosis is a common yet poorly understood condition. In recent years, failures in diagnosis and treatment are increasingly highlighted in media and academic discourse as emblematic of gender biases in health and medical research. The remerging field of critical menstruation studies also revitalised scholarly interest in the condition. This timely edited volume will be the first to bring together social science and humanities perspectives, alongside and in conversation with, (bio)medical and patient advocate perspectives, on endometriosis. It will focus on practices of exclusion in past and present approaches to endometriosis, as well as potential inclusive futures to address the ongoing inertia around care improvement.

The way endometriosis is framed is central to how it is understood, experienced, and treated. (Re)shaping endometriosis categorisation is inevitably a political endeavour. Endometriosis has long been categorised as a gynaecological (pelvic) condition and a ‘women’s disease.’ Recent biomedical research, however, now defines endometriosis as a systemic condition affecting the whole body, like rheumatoid arthritis or multiple sclerosis. In tracing shifting historical and contemporary understandings of endometriosis, this volume aims to focus on the politics and practices of exclusion and inclusion embedded in the (re)making of disease categories.

Medical discourse continues to construct those with endometriosis as reproductive bodies with hysterical traits, with patients often described as ‘difficult.’ This echoes patients’ reported experiences of dismissal and being made to feel symptoms are ‘all in their head’.  The volume is poised to be relevant outside the specific remit of endometriosis, to other contested disease experiences including fibromyalgia, chronic fatigue syndrome, ‘long COVID,’ and more.

Chapter contributions might consider (past, present, and/or future) framings of endometriosis and the implications/practices of inclusion and exclusion in relation, but not limited, to:

• Historical legacies and persistent myths surrounding endometriosis.
• Experiential, marginalised, and/or intersectional knowledge of endometriosis, chronic illness, disability, and/or other contested diseases.
• Silos within the field (e.g., between biomedical and social sciences, patients & health practitioners, and various care specialists, etc.).
• Extant research with overlooked/excluded patient groups, including those from ethnically and racially minoritized communities, LGBTQ+ and gender diverse communities, young people, those who are postmenopausal, those residing in the global south, and more.
• Socio-cultural-political implications of medical framings of endometriosis as a systemic (i.e. whole body), rather than solely gynaecological, disease.
• ‘Patient community’ (online) spaces, advocacy and organising.
• Contemporary (inter)national government policy and medical guidelines.
• Possible, inclusive future (theoretical) framings of endometriosis.

Submission details:

Each contributing chapter will be approx. 3000 words in total.

Please send proposed chapter abstracts (approx. 300 words), a brief biography (approx. 200-300 words with links to previous relevant publications if available) tosocialendonet@gmail.com or annalise.weckesser@bcu.ac.uk by February 29^th 2024.

To receive the forthcoming separate proposed special issue in a medical journal call, please contact socialendonet@gmail.com or annalise.weckesser@bcu.ac.uk.

“Sick Lit”, a nickname for illness narratives, is a rising trend in literature. Deeply personal and yet oddly universal, stories about health struggles and the journey towards healing and acceptance are resonating with audiences worldwide.

November through March, we will be speaking to “sick lit” authors with a particular focus: endometriosis. Abby Norman (USA), Emma Bolden (USA), Kylie Maslen (Australia), Tracey Lindemann (Canada) and Siliva Young (USA) have all authored brave and beautiful texts about their struggles with an illness that is often referred to as “invisible” and “elusive”. They’ve chronicled their journeys through the healthcare system in autobiographical books, memoirs, and activist literature.

The events are online, free, and participatory – after a short reading and a moderated discussion, you’ll be able to ask the authors your own questions or share your own thoughts and stories, if you so choose.

Register here.

This series is part of the In/Visible Endometriosis: Menstruation, Menopause, and Narrative Medicine project carried out by the Center for Interdisciplinary Research on Aging and Care (CIRAC) and sponsored by the Elisabeth List Fellowship Programme.

 

The 7th European Endometriosis Congress will be held from 6-8 of June 2024 in Bucharest, Romania.

“We will continue our tradition to show the latest trends and innovations in diagnosis and treatment of endometriosis. The recent dynamic of endometriosis research in molecular pathology, genetics, robotic surgery, imaging and artificial intelligence will be discussed with experts from all around the world.” Abstracts due 20^th December 2023, more information: Abstracts – EEC 2024

Membership Matters 

We are thrilled to announce that SEEN has a website!  We listened to the membership and ensured the website has a free Members’ Directory so that you can connect with fellow endometriosis researchers across the world.  

To join and have your listing reviewed for approval/inclusion click here: JOIN NOW

The second edition of Endo Violence Magazyn is back to illuminate the inequity and injustice surrounding endometriosis. Endo Violence is a print publication featuring 10 international artists in a safe, experimental space for victims/survivors to share curated stories on creative platforms to increase the visibility of a disease considered invisible.  Endometriosis, a disease affecting at least 190 million globally that can grow anywhere in the body, is often dismissed by centuries-old stigmas on gender, pain, and menstruation.

Endo Violence is a testament to the resilience of the global endometriosis community which waits 10 years for a diagnosis on average, and the courage of contributors to share their stories. 

This unique publication is more than just a zine. “Endo-Violence Temporalities: Exploring Digital [Invisibilities]” is part of a comprehensive research project at Leeds University’s INCLUDE+ Network that is funded by UK Research and Innovation (UKRI) to build a knowledge community around in/equalities in digital society.

Endo Violence creates a community platform for voices relegated to be unheard and to increase attention on the digital invisibilities of endometriosis and the violence of silence especially for people who experience structural medical violence.

Readers are invited to explore diverse narratives that challenge sensational suffering or miraculous recovery often portrayed in mainstream media. The second edition features powerful work from 10 international artists, activists, and writers:

Dr. Alicja Pawluczuk/HYSTERA, Alice Brunello Luise, Allison Rich, Angie Mashford-Scott, Freshly Peeled Organs, Iness Rychlik, Laney Lenox, Nikita Aashi Chadha, Rachael Jablo, and Steph Bussey.

For media and print inquiries, interviews please contact: 

Dr Alicja Pawluczuk/HYSTERA

 Artist and Research Fellow at the INCLUDE+ Network, University of Leeds.

Founder of Endo Violence Magazyn 

Publication Highlights

Associations between psychological flexibility and daily functioning in endometriosis-related pain by Sundström et al. A systematic review to determine use of the Endometriosis Health Profiles to measure quality of life outcomes in women with endometriosis – PubMed (nih.gov) by G L Jones et al. Living With Endometriosis: A Reflexive Thematic Analysis Examining Women’s Experiences with the Irish Healthcare Services   by Lightbourne et al. Primary care clinicians’ perspectives on interacting with patients with gynaecological conditions: a systematic review | BJGP Open by Briscoe et al. Transgender and non-binary people’s perception of their healthcare in relation to endometriosis: International Journal of Transgender Health by Elder & RoomaneyChapter Call Reframe Endo Did we miss any? Include recent publications in next newsletter, email: annalise.weckesser@bcu.ac.uk