I might have been able to hustle through my endo diagnosis, but healing in the long term required a more creative approach.

Photo by Fred Lahache, courtesy of Frankie Magazine

Learning about endo

"I just don't see how endo can fit into my schedule!" I vented to my partner in frustration. After years of pain, just weeks from starting a new job and months from moving overseas from Australia to Europe, I'd first learnt about endometriosis. It was a huge discovery, a previously unheard of life-altering chronic pelvic pain condition affecting 1 in 9 people with uteruses. Within days I'd highlighted the hell out of the 'How to Endo' guidebook, planned my diagnostic surgery and recovery schedule and joined all the support groups I could find online. Despite years of being turned away by GPs, I was confident I had it. I was determined to 'solve' it, and there was no time to waste.

Meaningful Instagram post - tick. Giving extended family 'how to support me' paperwork - tick. Monologues to read my new GP, specialist, physio and psych - tick, tick, tick! What I'd come to understand in the coming months was that endo isn't a to-do list.

Managing endo required a self-compassion which I'd never made room for as a hard-hustling perfectionist. Before even getting a diagnosis, I'd pushed myself harder than I had at my healthiest. I developed an international endo research project with a dozen partners, designed two endo art series, planned an exhibition in France, and even got the project funded. While I can't say it distracted me, it fuelled me, giving me a ruthless drive that led me to abandon the fundamentals of my inner wellbeing.

As defined by influential psychologist Kristen Neff, self-compassion entails "being warm and understanding toward ourselves when we suffer, fail, or feel inadequate, rather than ignoring our pain or flagellating ourselves with self-criticism". It often involves acknowledging suffering, accepting our humanity, and meeting your own needs in each moment. In the context of endo, this could mean coming to terms with your suffering, not blaming yourself for your pain, and not criticising your body with hateful thoughts or forcing it to endure more than necessary.

I've come to understand that you can't plan endo. Pain hits you when you least expect it - even when you tell your body it's wrong, and it shouldn't be there, it's still there. At work, at home, at the movies, in the car, in moments of panic, during sleep... I never knew when a pain episode would start, and my building awareness of my condition only made me more anxious.

As an artist, I decided to visualise my pain creatively and loop some other endo warriors in on the process. This gave me community. Although while paying more attention to my body, listening to myself, and sinking into my art experience, my condition worsened. My mind flooded with thoughts that my body was dangerous, and it was failing me. The tension I held in my body fuelled my endo-triggered muscle dysfunctions and piled more and more pain onto my sensitive body after years of rewired nerves from flare-ups.

One of the things which helped me learn about what was happening was connecting with others with endo through my project and witnessing as they experienced their own breakthroughs through art. Shame was normal, disconnection was normal, secrecy was typical. It sucked, and it sucked for everyone.

Blown away by the extent endo affected other people's lives, I found an incredible absurdity in the way endo is socially navigated. Centuries of a male-dominated medical profession led to the normalisation of women's pain - big surprise there. Although in 2021, male and female doctors alike were quick to dismiss endo symptoms. Furthermore, endo education was minimal. While in school, although I'd had sex-education classes once a week, nobody had discussed pelvic pain or associated illnesses, even though many experience them, often leading from years of pain to severe surgeries.

Endo doesn't feel quiet, it screams inside you, yet the world seems to be silent about it. It appeared to be too taboo, disgusting, pathetic for the eyes of the world. It was an invisible illness experienced by many but spoken by few. I felt that pain communication was a critical issue that required some creative support.

Art and suffering

I believe that the role of artists is to be curious, dig deeper, connect the dots, and communicate things with others in a creative new way that moves others. This mental approach to art can also be used to dig deeper into one's own psyche - such as art therapy, visual communication, psychological assessments, and meditative practice. For example, the Rorscharch Inkblot Test had been used for one hundred years to uncover the subconscious thoughts of psychology patients. Patients are asked to describe what they see in an abstract blot of ink, providing glimpses into their brain's functioning and assisting professionals in unearthing crucial components of their mental health. Ironically in the inkblot below, I first saw a pelvis.

The internationally acclaimed artist Frida Kahlo also used painting to process and express her physical trauma. She painted beautiful, evoking pieces about the traumas of her life, including a bus accident that sent a metal rod through her spine and out her pelvis. Her work went beyond herself to connect with important gendered and political issues, sending ripples across Mexico and later the world. In 'The Diary of Frida Kahlo' by Carlos Fuentes, she is evocatively described as a broken Cleopatra, hiding a tortured body underneath gowns adorned with ornate laces and ribbons. Kahlo was "showing us all that suffering could not wither, nor sickness stale, her infinite variety". On her first cast after her horrific accident, she adored herself with paintings including a dark butterfly, symbolising her own eventual birth from her new cocoon.

Collage artwork by QENDO workshop participant, courtesy of Brooke Krumbeck

Along a similar vein, the creative pain visualisation workshop I ran with QENDO explored both participants' feelings of physical pain, their endo's inner emotional impact, and their subsequent interactions in society. More and more, I realised how endo affects so many elements of people's lives. I saw how it had changed my own confidence, body image, romantic relationships, and friendships.

Using raincoats placed over participants bodies, paint, and collage cutouts like teeth, hands, flowers, lava, daggers, and thorns, eight people with uteruses from around Australia joined together to tackle the task of visualising their endo pain. I was blown away by both the artworks and the reflections that emerged alongside them. One participant separated her brain and body with a thorny vine, sharing that the activity gave her a new language to explore the psychological detachment accompanying her pain.

Exhibiting my pain

Raincoat painting by QENDO workshop participant, anonymous

After having my endo surgically diagnosed, resigning early from my new job after the guilt of too many sick days, and flying to France to create my artwork, I knew my project had to do more than visualise physical pain. It also had to explain how painful it was to socially perform endo symptoms to get the necessary help, often after many years of shame and dismissal. I crafted photographs and conceptual fashion artworks that shared my pain using workwear-inspired shoulder pads, hospital gowns, and glittery accessories. From my anaesthetised dreams in surgery to endo metaphors in books and my own pageant-like frills and gloves, I shared the unknown struggle of navigating life with endo - my neat initial checklist aside.

The three hospital gowns I created were titled 'Pain Pageant', 'Laparoscopic Dreams', and 'Triggers'.

Pain Pageant was inspired by a demeaning old advertisement for a belt that supposedly calmed hysteric women with chronic pain.

I recreated the belt with a uterus-shaped cushion, as weeks before and after my endo diagnosis, I walked around with a safety cushion over my torso. Walking, sitting, and moving all felt unbearable, like my bones were poking against my skin, and the softness of a cushion helped comfort me.

The glittery adornments and ribbons over the hospital gown made the outfit showy, attention-grabbing, ultra-feminine and almost performative. Acting out pain is a perplexing and excruciating social experience, and I wanted to re-create the feeling of putting on a show.

Laparoscopic Dream is a more symbolic gown. It combined common metaphorical interpretations of endo pain like fire and teeth with my absurd anesthetised dreams during my diagnostic surgery for endo.

Finally, the triggers gown, a prototype for an electronic suit triggering an alarm system with touch. The dress shows a beaded black web curling out from the uterus and around the body. Pain triggers and associated symptoms like painful sexual touch, caffeine and alcohol, and IBS were linked into this web, shooting back down into the pelvis as endo flare-ups typically do.

Surreal and metaphorical in style, my pieces alluded to the mysterious, isolating, and complicated experiences of navigating endo. Using the familiar, beautiful, and delicate flower symbol, I sought to make endo conversations softer, less taboo, and more accessible.

Staged in a French botanic garden, my use of flowers built on the deep history of patriarchal allusions to flowers based on virginity and beauty to make them radical and empowering emblems of forbidden suffering. Whimsical, satirical, and glitteringly alluring, I designed my artworks to draw the eye, inspire the mind, and compel viewers to think twice about how they understand pelvic pain.

Working in France

Lake photograph, Courtesy of the Botanic Gardens of Marnay sur Seine

Creating the artworks in the Botanic Gardens of Marnay sur Seine in France was dreamy, confronting, peaceful and chaotic all at the same time. It was scary making artwork for a foreign audience who may not understand my experience – language and health alike.

Parading around the gardens for a photographer one morning in one of my hospital gowns was both shameful and thrilling. The grounds were filled with hidden lakes, alien-like shapes and fragrances, and a thorny corridor of vines where my exhibition would be.

Flower photograph, Courtesy of the Botanic Gardens of Marnay sur Seine

My underwear stood out against my skin between the large, excessive pink bows at the back of my 'Triggers' gown. I avoided eye contact as I walked through the gardens on display in my extravagant, attention-drawing costume. I awkwardly maneuvered myself as not to draw attention to my bare back around onlookers. Like navigating the world with endo, my body felt loud and overt while my mind wanted to hide in the shadows.

Healing and acceptance

Embarrassed but bold, self-critical yet proud, my oxymoronic endo experience continues each day in all its colour and complexity. It took up until a month after the exhibition to stop being surprised by my pain. Each time it spontaneously arrived again after the surgery, I was angry to have my illusion of healing burst again. I criticised my body with insults, blaming myself and searching for reasons I could have caused yet another flare-up.

I strive to suffer nobly, share my experiences, and be an example for others of the personal turmoil that endo entails – none of us are alone. Of all my attempts to intellectualise and benefit from my own pain, the most impactful things on my journey have been the following insights, founded in awareness and self-compassion.

· "I am feeling fear right now, and that's okay."

· "This is not my fault."

· "I give my body permission to rest."

Now three months post-op, I continue to learn and recover from the other side of the world. I'm eager to keep connecting with others in the endo community and spark more conversations that challenge myself and others to help make endo more bearable and socially accepted. Thanks to the support of The Australian-French Association for Innovation and Research, I'll be running another art workshop in collaboration with EndoFrance in Paris.

I am also running an international online endo pain communication forum in March 2022 showcasing innovative research, international medical practice, and personal stories from creatives involved in the project. While excited to learn and share, I'm most of all willing to see myself and let myself be seen with endo. I think it's part of the healing and acceptance process.

If you're interested in attending or speaking at the forum, please contact me via the form on my website! Here's to learning, growing, creating, and healing together.

Jess Coldrey is a 2021 Victorian Government John Monash Scholar and internationally

exhibited technology artist, most notably curated into exhibitions for the Australian Ian Potter Centre, Melbourne Science Gallery, and the United Nations' COP26 conference in Glasgow. From robotics and drone selfies winning her the prestigious Agendo Art Prize to her recent fashion project in Paris exploring endometriosis, her art has traversed creativity and engineering to spark new conversations about the future.

The media has widely featured Jess' work, with focus articles from The Australian Newspaper, Frankie Magazine, Highway Engineering Australia, The Art Almanac and Australian Photography Magazine.

Find more about her work www.jesscoldrey.com

This Blog has been written for QENDO and shared with consent.

This blog does not constitute medical advice and is a personal story by someone living with pelvic pain conditions. The medications, supplements, health providers mentioned in this blog are not endorsed by QENDO nor does QENDO receive financial incentive for these products or by the medical professionals mentioned. Please consult with your health care team before considering taking any supplement, medication or treatment pathway.

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