'Being validated was wonderful': Help for navigating the world of endo returning to Canberra

When she was a teenager, Jess McGowan was told she was ‘too young’ to have endometriosis.

The moment followed years of doctors telling Jess her painful periods weren’t a problem.

“I guess I was sort of made to feel that way, so I just saw myself as being a sook,” she says.

In endometriosis (aka, endo), tissue similar to the lining of the uterus grows outside the uterus in places where it doesn’t belong.

The disease’s symptoms can include pelvic pain, painful periods, infertility, bloating and abnormal menstruation – and it can be debilitating.

“I was diagnosed just after I turned 19 and I had my first surgery,” Jess says.

“I remember waking up from surgery and them telling me, ‘Yes, it’s confirmed endometriosis’ and feeling so relieved, feeling so odd that I felt relieved about it.

“It was just having an answer that was wonderful; being validated was wonderful.”

What it’s like to live with endometriosis, along with how the women living with the disease can be supported, will be put in focus this weekend in the Endometriosis and Pelvic Pain Expo.

QENDO is a peak organisation that supports those affected by endometriosis, adenomyosis, PCOS, infertility or pelvic pain, and has chapters across the country.

Shortly before the start of the COVID pandemic, Jess became a community lead for its Canberra/ACT branch, alongside Natalie.

Together, they had long planned to organise an event dedicated to endo.

“We knew at the time we didn’t really have the numbers [for the event], because our group was reasonably small at the time – compared to what it is now, anyway,” she says.

“We decided that this year was the year to do it, but it has been on our radar for quite some time.”

At the Endometriosis and Pelvic Pain Expo on Saturday (22 March), Jessica says there will be researchers, exhibitions from businesses and tips for self-advocating.

“[We wanted] an actual expo with trades and businesses because there is so much that goes into managing endometriosis – a lot of it is just general self-care,” she says.

“That’s where the businesses came in, and we’ve been very lucky to have some incredible businesses jump on.”

The expo is aimed at everyone – from those living with endo to people who want to learn more.

“It’s not just for one demographic, it’s a wide range of people,” she says.

“We have a couple of teens and their parents coming, and we’ve also got people that have already gone through menopause but they had endo for 30-something years.”

While Jess feels it’s a “completely different world” now, compared to when she was diagnosed, she says harmful endo myths are still common.

She hopes that it helps connect people to accurate information and resources to “make the most out of a shit situation” of living with endo.

“We’ve still got a very long way to go, in terms of just general education,” she says.

“For everyone that has had endo for more than 10 years, we’ve all got that list of things that we wish we knew back when we were diagnosed.

“There are still things on that list that people who are being diagnosed today are still not being told.”

The Endometriosis and Pelvic Pain Expo will be held on 22 March (this Saturday), from 9 am to 5 pm, at Exhibition Park Canberra, at the corner of Flemington Road and Northbourne Avenue in Mitchell.