Wallan’s Kylie Perry is calling for development of diagnostic tools, treatments and raised awareness for endometriosis after undergoing nine laparoscopies in her 30-year battle with the condition. ​

By Grace Frost

National studies have highlighted the substantial economic impact of endometriosis, showing a correlation between the condition, financial burden and unemployment.

Endometriosis is a chronic inflammatory condition that occurs when tissue resembling the endometrium – the lining of the uterus – grows outside of the uterus.

The condition affects one in nine Australian girls and women, and can cause chronic pelvic and menstruation pain, fatigue, painful bowel movements, pain during and after intercourse and infertility, as well as mental health problems.

Recent studies in the Annals of Epidemiology found women with surgically confirmed endometriosis to be significantly more likely to face unemployment than before diagnosis, due to the physical impacts of the condition and the limited support for women suffering within the Australian workforce.

Plos One found endometriosis to cause women substantial financial burden, with increased healthcare, carer and productivity loss costs totalling an average of $20,898 per person, per year.

Wallan’s Kylie Perry, who has battled with endometriosis for more than 30 years, is determined to raise the profile of the large-scale impact of the condition, with Endometriosis Awareness Month in March.

Ms Perry first began experiencing cramping, nausea and digestion problems when she was in year seven, and later ‘excruciating’ pain when she first got her period, leaving her ‘curled up in a ball, throwing up’.

An orthopaedic surgeon speculated Ms Perry had endometriosis when she was 17, confirmed via a laparoscopy.

With limited information and research into the condition in the early 1990’s, health practitioners recommended Ms Perry, who was still a teenager and at school, fall pregnant.

“They used to think that when you gave birth, all the endometriosis would flush out with it, so, at 17 [in 1995], I was told that I should consider having a baby,” Ms Perry said.

After refusing to fall pregnant, Ms Perry was suggested to go on birth control to stop her period and minimise symptoms.
But birth control proved ineffective for Ms Perry.

Ms Perry, now 46, has stage four endometriosis.

The lesions had spread outside of her pelvic area, attached to her appendix and caused a lump in her bowel, which was down to seven millimetres.

Endometriosis has also resulted in infertility for Ms Perry.

“All I ever wanted to do was be a mum. I was devastated I couldn’t have children,” she said.

Ms Perry has undergone nine laparoscopies, in all of which endometriosis was removed.

She said the condition forced her to give up work as a senior pharmacy assistant and at a health food shop, as the pain made it too difficult to concentrate.

But Ms Perry said public hospitals were now ‘overloaded’, still leaving her between $5000 and $20,000 out of pocket for each surgery when she used the private heath system.

She is reliant on her partner’s income to pay for a private surgeon.

“Women are accessing their super to pay for their surgeries,” she said.

“I had one laparoscopy that was private – my grandma had given me money when she died, so I had to use that.”

Ms Perry said there was a dire need for research into non-invasive diagnostic tools and treatment options for endometriosis, which she said were lacking in Australia, so that women with the condition could experience an improved quality of life.

Currently a laparoscopy is the only definitive diagnostic tool, and average time between symptom onset and definitive diagnosis is eight years in Australia.

Ms Perry said the absence of a multidisciplinary team of surgeons during treatment meant lesions could often be missed, as the nodule on her bowel was.

“Overseas, they’re treating it properly. The gynaecologist has a team of his own, a bowel surgeon who does the bowel and surgeon who does the intestinal tract,” she said.

Ms Perry said she hoped increased research into the condition, being addressed at a national level via the National Action Plan for Endometriosis, would encourage more girls and women to receive early diagnosis and more affordable, quality treatment.

“[Endometriosis] steals your life, it’s taken so much from me,” she said.

“Hopefully [women being diagnosed] won’t have to go through all of the pain and trauma that I have endured.”