Jess McGowan has been in the pelvic pain advocacy space for about 20 years, and has been diagnosed with endometriosis, PCOS and adenomyosis. Photo: Claire Fenwicke.
It’s been described as a pain that can go from a constant dull ache to sharp and intense cramping, usually associated with severe pain during periods and sexual intercourse.
Now an ACT parliamentary committee will hold an inquiry into endometriosis and other pelvic pain, examining barriers to diagnosis and treatment, the role of medical misogyny, and the social and economic impacts the conditions have on Canberrans.
For QENDO peer support lead Jess McGowan, who has been involved in the pelvic pain advocacy space for about two decades, it’s about time.
“The quicker [the health system] can get on top of this, the less people are suffering and missing work and having to go to ED or having to travel interstate to get these treatments,” she said.
“We’re the capital of Australia, it’s embarrassing that we’re this far behind.”
QENDO supports people with chronic pelvic pain conditions such as endometriosis, adenomyosis, PCOS (polycystic ovary syndrome) and resulting infertility.
Ms McGowan has all three conditions, and has not been able to have children as a result.
She said while social awareness of pelvic pain conditions — particularly endometriosis — had improved in the past five years, awareness in the health setting “has not changed”.
“Emergency departments are a little bit more understanding because, I think, more nurses and doctors know a little bit more and are recognising it a bit more,” Ms McGowan said.
“But other than that, they’re not treating it any different. It’s just a bad period, take some Tylenol.”
However, social awareness and education could also go much further.
“What we’re often seeing now is that, when people with endo are open about being upset when they don’t have access to a treatment option they could benefit from … they’re sadly viewed as being ungrateful, or like they’re expecting endo to be prioritised over all other health issues,” Ms McGowan said.
“People don’t understand just how complex endo is.”
Brindabella Labor MLA and backbencher Caitlin Tough called for the inquiry during a recent Legislative Assembly sitting.
The Endometriosis Australia ambassador experienced painful periods since she was 12, which started appearing fortnightly when she was 14. She was finally diagnosed with the condition when she was 24.
“I missed so much school. At one point in Year 12, I was only attending school nine days a fortnight, because I couldn’t actually … go full time [because of the pain],” Ms Tough said.
“I saw so many doctors, I had so many ultrasounds, I tried so many different hormonal contraceptives as treatment, and I spent so many days and nights in an emergency department.
“I never want another teenage girl to go through what I went through as a teenager.”
One in seven women lives with endometriosis, and one in four has indicated their pelvic pain interferes with their ability to function. It’s estimated about 27,000 Canberrans might be living with endometriosis.
Ms Tough acknowledged the work being done at the Canberra Endometriosis Centre, and commitments from the ACT and Commonwealth governments, but felt there needed to be a wider understanding of how Canberrans were being impacted by the condition.
“We need to know where the gaps in care are, we need to hear the voices of individuals navigating endometriosis and pelvic pain,” she said.
“Many of us are living with pain that is invisible to others, but is relentless in its impact.”
It’s expected the inquiry will also examine why the ACT stopped allowing pelvic pain sufferers to access pelvic Botox.
Ms McGowan accessed the treatment before it was banned in the Territory in early 2025 and said she still didn’t understand why the decision was made to stop making it available.
“The one specialist that did do it here and hopefully will again, [he’s told me] he’s happy to train people, he’s more than happy to do it because he sees the benefits, but they just need to give him that chance,” she said.
“It’s a good treatment option, it’s low risk, no actual cutting or anything … it has good results, good data behind it.
“We’re thankful the Health Minister [Rachel Stephen-Smith] seems open to reinstating pelvic Botox injections again and that she apologised during the debate [on this issue] to everyone with endo who had presented to an emergency department in Canberra in the past and had a poor experience.”
Mostly, Ms McGowan hopes everyone impacted by pelvic pain — not just those with the conditions, but their partners, family members, colleagues — will step forward and have their voices heard.
“We’re hoping for honesty. The more people are honest, the more [the government’s] going to see that, oh, there’s 100 people saying the same thing, and they might actually take it on board,” she said.
“People are sick of it, they’re sick of just going, ‘Government will help us and it’s all good, we’ll just wait it out’. But no, it’s not [all good], they’re not helping us.
“We need to help ourselves, basically.”
Submissions can be made to the endometriosis and pelvic pain inquiry until 3 April, 2026.
