Leah Trenberth has experienced extreme pain and nausea ever since she got her period, but was only diagnosed with endometriosis in her late 20s after doctors dismissed her symptoms as “needing to go to the toilet”.

The Eyre Peninsula resident said she hoped an inquiry into endometriosis would lead to real change and was not just an initiative to “make the government look good”.

“I’m hoping that this will create a program and support for GPs, teachers, even parents, anyone, to be educated in how to look out for the signs,” she said.

“I hope it creates more access to specialists and doctors, specifically in the gynaecology area, so referrals can happen sooner, and we can see more girls and women get the help they need.

“I really want the public to take it seriously, fill in the surveys if there’s surveys, speak to people about it.”

Ms Trenberth also thinks the inquiry will find the number of women with endometriosis is higher than then the estimated one in seven, as reported by the Department of Health and Aged Care.

“I think it’s going to end up being one in five, or one in three, the more people you talk to,” she said.

‘Nitty gritty’ of impacts

Member for Waite, Catherine Hutchesson, successfully moved a motion earlier this month to establish a state-first Parliament Select Committee into the prevalence and effects of endometriosis on South Australian women, and what could be done to improve treatment and support.

Ms Hutchesson, who lives with endometriosis, said she wanted to use her platform to “progress work within the space” and improve government understanding.

“It meant everything [to me] to get this committee up for women across the state, to see what we can do as a government to support and help,” she said.

Ms Hutchesson said the committee would soon advertise to speak to individuals and stakeholders about their experiences with the condition.

“We would hope that we hear from all sorts of sectors … really getting into the nitty gritty of how it impacts women in their everyday life,” she said.

“Then we’ll deliberate and put together all of the information, write a report about what we’ve learned, and then come up with some recommendations for government to consider.”

No magic fix 

The Yorke Peninsula Pelvic Pain Clinic is one of two endometriosis pelvic pain clinics in South Australia as part of a national program funded by the Australian government last year.

General practitioner and obstetrician at the clinic, Anna  Kearney, said general practice was “perfectly poised” to manage endometriosis pain and pelvic pain and had been seriously underfunded for many years.

“I think that the inquiry’s hoping there will be some sort of magic solution, but we actually need to equip our GPs who are already in the community to be able to better recognise and manage pelvic pain,” she said.

“We’ve just allowed pelvic pain to become the norm for far too long.”

The cost of the disease

Yorke Peninsula mother Kendall Barker was diagnosed with endometriosis after having children, so she was well equipped to help her daughter when she presented with similar symptoms. 

Living regionally, Ms Barker said it was great to have a specialist clinic around the corner. 

Despite seeing a physiotherapist, nutritionist, and doctor, her daughter still needed to travel to Adelaide to undergo surgery.

Ms Barker said she hoped endometriosis would be recognised as a serious condition and that financial support was provided.

“At the end of the day there are people who can’t go to work. How do they financially support themselves?” she said.

“It’s not a choice.”