Endo Days: Life, Love and Laughter with Endometriosis

I was just smacked with the revelation that I’d had a chronic illness most of my life and it was never going away.

Endometriosis, comedy, songs and a book. Not the most obvious bedfellows, but teacher, comedian, cabaret performer and author Libby Trainor Parker has reacted to years of undiagnosed pain and medical gaslighting by combining educationwith humour.

Libby suffered for 36 years before she found out she had endometriosis. The diagnosis helped explain so much: chronic pain that had contributed to dropping out of high school and quitting jobs she loved, multiple pregnancy losses, and the shame and self-doubt that came with being told, over and over, that her pain was ‘all in my head’. One doctor told her, “you’ve just got your knickers in a twist”.

She even had a perfectly good appendix removed following a misdiagnosis.

The endometriosis diagnosis was also terrifying. “I was just smacked with the revelation that I’d had a chronic illness most of my life and it was never going away”.

Endometriosis is an incurable pain condition that affects one in nine people who menstruate. Tissue like that of the endometrium grows outside the uterus, causing symptoms which can include chronic pain, inflammation, fatigue, fertility issues, low mood and comorbidities.

Libby was sent away from the hospital, where she was diagnosed via laparoscopy, with “no information and no hope”.

After years of coping with the stress of teaching as well as endometriosis, Libby quit because she “just couldn’t do it anymore” and used her journalism degree to start writing freelance articles and speeches for a politician.

Aware of some political moves to advocate for women with pelvic pain, Libby decided to write a comedy show about endometriosis.

“There’s nothing funny about chronic pain, but comedy diffuses pain. It’s my therapy. It makes things accessible.”

Libby said the show makes endometriosis sufferers feel less alone.

“We all share and talk about our experiences.”

Libby joined forces with the Pelvic Pain Foundation of Australia to write schools program PPEP Talk (Periods, Pain and Endometriosis Program), which she delivered in South Australian schools.

It was later rolled out nationally. She also joined the Australian Coalition for Endometriosis advising on the National Action Plan for Endometriosis led by former Health Minister Greg Hunt. And she took over the administration for online support group Endo Support SA.

The school program is aimed at students in Year 10, boys and girls.

“We have education about asthma and diabetes, why not this? If one in nine people are suffering, we need to talk about it.

“It’s delivered by dynamic young educators, it’s medically supported and it’s informative, not catastrophic.

“It provides tips about dealing with pain that everyone wants to know.”

Libby has also written the book Endo Days: Life, Love and Laughter with Endometriosis.

She shares her battle to be diagnosed, her successful journey to get education into schools, her struggles with fertility through 11 pregnancy losses – and her eventual acceptance that she’ll never have a baby of her own, countered by loving relationships with her two stepchildren and a foster child.

Libby interviewed patients, parents, partners, health practitioners – and her own stepchildren – to create a journalistic memoir that’s part narrative, part instruction manual and part comedy routine.

Endo Days threads the story of Libby’s life with endometriosis through interviews with a diverse range of ‘endo friendos’ across Australia, including the experiences of trans, queer, neurodivergent, younger, older, First Nations, metropolitan and rural Australians. And she offers tips and tricks for living well.

“Endo can be an isolating illness and so many of us feel lost, frustrated and confused. So Endo Days is a bit of a guide to life, but from someone who got it all wrong and then learned how to live better after a few false starts,” Libby said.

“I have tried to share everything I have learned along the way, but, more importantly, give a voice to the many endo patients who have told me their stories. We want our community to know they are not alone and that there is hope.”

For more on PPEP Talk see www.pelvicpain.org.au/ppep-talk-schools-program/.

For more support see: endometriosisaustralia.org

Newsmonth has free copies of Endo Days: Life, Love and Laughter with Endometriosis to give away. See Giveaways