Endometriosis; a chronic inflammatory condition characterised by tissue similar to that which lines the womb (endometrium) implanting within the pelvic cavity (Zondervan, Becker, Missmer 2020, 1244). This enigmatic condition affects so many women, trans men and non-binary people (estimated to be at least 190 million worldwide), that annually, the month of March is dedicated to raising awareness around the condition.
As a third year DPhil researcher and scientist investigating endometriosis-associated pain and its impact on those living with it, every day of the last few years has been about endometriosis-awareness. Like any PhD researcher, I’ve spent a countless amount of time reviewing the endometriosis literature to better understand what we know about the condition, and of course, what we do not. One of the many gaps in our understanding is about the pain that people affected by the condition experience. Endometriosis is often thought of and described as a chronic pelvic pain condition, because the disease itself is most-often located within the pelvis, and most people with the condition do experience one of many chronic pelvic pains. Over the last few years, I’ve explored pain that exists outside of the pelvis to answer the question: ‘What is the burden of widespread pain in endometriosis?’. This question has been asked by researchers investigating other pelvic pain conditions, such as bladder pain syndrome, but not yet in relation to endometriosis (Lai et al. 2017, 623).
My first piece of ‘real’ work in my DPhil was a small study investigating the impact that widespread pain (understood more as the regions of pain, in addition to the pelvis, affected) had on people with endometriosis. To my surprise, more than 80% of women in my study experienced widespread pain. With more regions of the body affected by pain, women experienced greater depression, had more pain conditions, and reported more difficulties trying to get pregnant. Although this was a small study, it ultimately highlighted the significant burden of widespread pain, a burden that is potentially not being adequately addressed or managed. Since this first study, I’ve continued to better understand the relationships through scientific exploration and analyses. It was only in the last year, however, that I began to fully appreciate the translatability of this work to realms outside of science; specifically, to art.
In contribution to the month long discussion and endless events about endometriosis throughout March 2021, on Saturday 20th March I delivered a Public Engagement with Research (PER) project titled ‘Won’t you look a little closer? Pain beyond the pelvis in endometriosis’. In the first instance, this project aimed to engage the public in conversations about endometriosis, and communicate the pain experienced with the condition through visual art. In parallel, it was an opportunity for fellow DPhil and Postdoctoral researchers in endometriosis to share their work directly with people who have the condition.
Centred around three unique art streams, ‘Won’t you look a little closer?’ generated 8 beautiful, complex and thought-provoking pieces depicting endometriosis-associated pain. People with endometriosis painted or illustrated their own pain, a visual artist without endometriosis was paired with someone who has endometriosis to paint their pain, and a guided paint night was run for people with the condition to paint their own pain within the confines of a woman’s body.
Fortunate to have participated in the paint night myself, I experienced first-hand the impact of community and shared experience when it comes to pain; each of the five participants, as they shared their pain experiences, realised just how much they had in common. As the event neared its end, it became clear that the paint night was about more than just painting. During the event, all artists presented their work to an audience of 40 people. As a scientist myself, it was inspiring and insightful to learn of the artistic choices made to capture their pain. The carefully selected colours, the painting’s focal points and the selected medium all uniquely conveyed that person’s experience and relationship with pain.
Perhaps one of the greatest outcomes of this event were the discussions that ensued. With endometriosis researchers, people who support people with endometriosis, and clinicians in attendance, a safe and open space was created to discuss the benefits of using visual communication tools to effectively highlight where and how an individual experiences their pain. One of my favourite questions posed by an attendee, was:
Can art be used as a tool in clinical practice?
Long story short, yes, it can, and should be. If people with endometriosis-associated pain find this tool helpful for communicating their pain experience, and it ensures these individuals feel heard, of course it should be. Kirsty, event attendee and participant, envisioned the positive impact that showing her painting to her endometriosis specialists would have on their understanding of her pain.
As the event progressed, we heard from researchers in the EndoCaRe and Pain in Women groups about their most recent research. I was amazed as I listened to the great conversations that arose between people who have endometriosis, the very people that our research aims to help, and scientists. I myself am a firm believer that in order for science to be robust and meaningful, we need to include science communication (communicating our science to members of the public in an easily understood way) in our research. These conversations proved that. The public is hungry to learn more about what goes on behind the seemingly impenetrable ivory towers. Without this knowledge translation, what is the point of the research we do?
Reflecting on this experience, I’ve come to realise just how important both interdisciplinary collaboration and stakeholder participation are to meaningful outcomes in research (both to the researcher, and the beneficiary). By featuring these incredible women and their stories with endometriosis-associated pain at the forefront of the event, we were all left with new perspectives: scientists considered the real-world implications of their own research, people with endometriosis acquired knowledge about research being done in the field, and for the first time, many of us experienced such a personal visualisation of pain.
While Endometriosis Awareness Month has (very quickly) come to an end, the conversations about art and pain from this event have only just begun. I invite you to now take a look (and listen) through the event’s virtual art gallery. Sit with the pieces, explore the artist descriptions, and if you’re up to it, I invite you to paint your own pain, be it physical or emotional. It doesn’t have to be pretty or presentable, rather a moment where your pain leaves the body, and becomes one with the paper.
This project was generously funded by the University of Oxford Public Engagement with Research Seed Fund.
If you have any questions about endometriosis, endometriosis-associated pain or the project more generally, please refer to links throughout the post, and additional resources below.
Endometriosis UK (UK’s Leading Endometriosis Charity)
The Pain Dictionary (Bodyform UK, #painstories from people with endometriosis)
Danielle Perro is a women’s health advocate, scientist and PhD researcher at the Nuffield Department of Women’s and Reproductive Health, University of Oxford. Her work aims to better characterise endometriosis on the basis of pain, more specifically, widespread pain outside of the pelvis. She can be found tweeting in her spare time @dperro_wrh.
Lai, H. Henry et al. “Characterization of Whole Body Pain in Urological Chronic Pelvic Pain Syndrome at Baseline: A MAPP Research Network Study.” Journal of Urology198, no. 3 (2017): 622-31.
Zondervan, Krina T., Christian M. Becker, and Stacey A. Missmer. “Endometriosis.” New England Journal of Medicine382, no. 13 (2020): 1244-256. doi:10.1056/nejmra1810764.