One in nine women have endometriosis but quality of care depends on their postcode and age

Rebecca Anderson was diagnosed at the age of 20.  (ABC News: Connor Byrne)

When Rebecca Anderson asked her doctor for a laparoscopy to see if she had endometriosis, he told her to come back if she was still in pain at 40.

She was 18 at the time.

“I said: ‘Are you joking?’ That’s a huge chunk of my life to be in pain.”

For two years she was told the persistent, stabbing and excruciating pelvic pain she experienced was anything from just period pain to “all in her head”.

“I definitely felt a bit crazy because every woman has a period and gets pain, it’s something that happens,” she said.

“If all these other women are dealing with it, why can’t I?”

Rebecca saw several GPs about her pain and was told it was not endometriosis.

As she continued to search for answers she couldn’t eat, felt constant fatigue and struggled with very heavy and irregular periods.

Pain medication barely helped.

When the now 22-year-old moved to Brisbane from Hervey Bay for university she began seeing a new doctor who immediately took her concerns seriously and referred her for a laparoscopy.

“Mum flew down to look after me. I was very sick before I went in. I was severely underweight. I wasn’t eating anything. If I wasn’t vomiting, I was having bowel issues or I was nauseous or dizzy,” she said.

Rebecca’s surgeon found and cut out endometriosis in two different places.

Finally, after two years she had a diagnosis.

“I remember just feeling complete relief, like a lot of people ask me if I was scared but I was just glad to find out I wasn’t crazy and there was something wrong.”

But she said her age and location shouldn’t have determined how easy getting answers was.

Statistically, Rebecca is lucky as the average time it takes in Australia for someone to get diagnosed with the disease is six and a half years.

It used to take eight to 12 years.

Age and proximity a major issue

Rebecca said lack of treatment options in regional Australia coupled with no education and misconceptions that young people can’t be diagnosed is a major problem.

“I definitely think that women’s pain needs to be taken more seriously and when they’re younger, it’s definitely something that needs to not be passed off as much.”

“There are absolutely knowledge gaps (between regional and metro Australia), I talk to a lot of women and they say they get the same pain and I say, go see your doctor,” she said.

“It affects one in nine people, it’s not a niche disease.”

‘I was clutching my stomach’

Amelia Mardon also feels lucky to have received a diagnosis for endometriosis far earlier than the average age.

She found out when she was 14.

“I’m grateful because a lot of people don’t have that experience but it still took two years experiencing these symptoms at a pivotal point in my life,” she said.

Amelia may have had a diagnosis but struggled with the lack of treatment options in her home town of Port Augusta, South Australia.

“Going home from my laparoscopy in Adelaide I had to travel three hours on a bumpy highway the next day which was horrific, I was clutching my stomach,” she said.

“The number one issue about having endometriosis in the regions is the lack of access to specialised healthcare.”

CEO of Endometriosis Australia Maree Davenport said regional endometriosis patients can experience longer diagnosis and less treatment options.

“We do know in rural and regional Australia the diagnosis is even longer,” she said.

“Access to basic healthcare, availability of GPs in general but particularly for bulk billing GPs [can] makes access to appropriate medical care challenging.

“If (GPs) are unaware of symptoms, they’re more inclined to dismiss, particularly young women, and we’re told all the times Mums taking young girls and young women themselves feel they’re not taken seriously.”

Girls as young as eight can suffer from endometriosis.

The federal government is expanding the number of pelvic pain and endometriosis clinics being delivered under an election commitment from both major parties.

The clinics are hoped to shorten diagnosis times and better inform communities of the disease.

But the new centres, in every state and territory don’t cover huge parts of Australia.

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Ms Davenport said it isn’t realistic to expect a specialised clinic for endometriosis and pelvic pain in every major regional centre but this is why it’s ‘crucial’ to ensure better awareness of the disease by all health practitioners.

“In GP and hospital settings, ensuring they can be more considered or more aware of the symptoms and the daily challenges.

“In rural and regional we also found during COVID that telehealth is an effective, efficient way to access specialist health care advice remotely and to also learn the strategies to be empowered to self manage the symptoms of your disease.”

Miss Mardon said there are more achievable ways to ensure better care and shorter diagnosis in the regions.

“For example my town doesn’t have a pelvic floor physio which is a great resource for pelvic pain,” she said.

She’d also like to see more upskilling by GPs.

“The Royal Australian and New Zealand College of Obstetricians and Gynaecologists came out with an education module for healthcare professionals which they can use for professional development,” she said.

“And even if they’re not dedicated clinics per se there could be incentives to get people back into regional areas or even if town had more gynos or physio.

“We know regional adolescents experience higher levels of pelvic pain compared to those in metro areas so clearly it’s needed.”

Miss Mardon points to a 2023 study by the Pelvic Pain Foundation that shows rural and regional students assigned female at birth are enduring higher levels of period and pelvic pain.

Twenty six per cent of girls surveyed  are regularly missing school or work due to period pain compared to 20 per cent in metropolitan schools.

Now working and studying in Cairns, Rebecca is hopeful that on top of her gynaecologist, physio and doctor she will be able to visit a pelvic pain clinic which is set to open.

In the meantime, she hopes that better education will give young women the tools to advocate for themselves.

“Know your body, and trust yourself. If something’s not right say something,” she said.

“I hope that by adding my voice to the conversation, we can begin to see change in how endometriosis is managed in the healthcare system.

“Or at least give others the knowledge to navigate their own experience.”

The ABC’s Heywire competition is open to all regional Australians aged between 16 and 22.

The annual competition provides a platform for the younger generation, in pockets of Australia that rarely see the spotlight, to “tell it like it is”.

If you are aged between 16 and 22 and would like to find out more about the ABC Heywire Competition, go to the ABC Heywire website.