Since an estimated one out of nine people who menstruate in Australia live with endometriosis, chances are you know someone who has it. A shared echo among those half a million people is that it took years to diagnose. If the disease is as common as the statistics project, why would this be the case?
In her debut book Endo Days, Adelaide performer, speaker and now health advocate Libby Trainor Parker details her experience of her own diagnosis with endometriosis, in which she endured two decades of useless medical prognoses. She was told to quit her job, because it was clearly stressful; that the symptoms were all in her head; that she was seeking attention or should be put on antidepressants; that she’d gotten her “knickers in a twist”.
Once she’d had an operation and the surgeon found cells similar to those lining the uterus growing on the outside of her uterus and spreading to other organs, those earlier responses to her complaints were proven to be cases of medical gaslighting.
Libby Trainor Parker shares her personal experience in new book Endo Days. Photo: That Photography
It’s taken a long time for research on endometriosis to gather momentum, while the taboo of menstruation-talk has meant women often accepted severe period pain and intense blood flow as normal and suffered in silence. What endo patients need is more open discussion within the medical community, in the home, at school and on social media.
Part-memoir, part-guidebook, Endo Days chronicles Trainor Parker’s revelations of, and relationship with, endometriosis.
Evolving from an award-winning Adelaide Fringe cabaret show that included audience singalongs about the uterus backed by a pyjama-clad band, the book is one written from experience. Alongside Trainor Parker’s candid voice are stories from other people living with endo, and from researchers, doctors and psychologists.
This structure insists the book steers clear of solipsism, and embraces inclusion and community. In saying this, I acknowledge that earlier in this review I’ve used the words women and female where I should have said assigned female at birth (AFAB), because as swiftly as the author discusses pregnancy loss and pelvic pain, chucking sickies and medication, disappointing friends with last-minute cancellations and managing mental health, she also illuminates endo in trans and non-binary bodies, and how that experience involves a different set of complexities for the person living with the condition. Indeed, let the discussions begin in a very modern-day way.
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Balancing brutal honesty and natural humour, Endo Days is brimming not only with generosity and sensitivity, but with information. Most chapters conclude with a practical checklist for the reader, assuming the audience will be those who live with endometriosis – either personally or, alternatively, as a partner, family member or friend. These include tips for communicating with your boss; tips for coping with endo pain while single; tips for helping your friends and family to help with your endo; and tips for prepping for and recovering from surgery.
The levels of help offered by Trainor Parker, and the ways in which the help is delivered, is multi-tiered and obviously comes from a place of urgency, determination and heart.
If you’re living with endometriosis or someone you love is, I eagerly recommend this book. It should be bought, read, dog-eared and post-it noted, recommended and passed around.
Endo Days, by Libby Trainor Parker, is published by Wakefield Press.
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