'It's all in your head': From misdiagnosis to motherhood, Amelia Parkins shares her battle with endometriosis

When Amelia Parkins started experiencing excruciating menstrual pain at the age of 13, she was told there was nothing wrong with her and that it was all in her head.

It took her nearly 12 years to receive an endometriosis diagnosis — a condition in which tissue similar to the endometrium (which lines the inside of the uterus) also grows outside the uterus. It can also affect nearby organs, including the bowel and bladder.

One in nine women aged between 12 and 50 in Australia live with the condition, and it takes an average of six to seven years for a diagnosis.

“I feel like anyone with endometriosis goes through this — having countless tests, ultrasounds, and blood work, yet still getting no answers,” Amelia told Region.

“Doctors often say, ‘Everything is coming back negative, so maybe we should refer you to a psychologist’. At that point, I thought, ‘OK, if that’s what it is, let’s address it’. But that never solved anything.

“I went to about seven different GPs before one finally referred me to a gynecologist, who then performed my first surgery in 2014.”

Amelia, now a Wagga councillor, said the standard narrative was that period pain was normal — something young girls and women were expected to manage with a heat pack and painkillers.

“But when you’re in constant pain, it’s more than just discomfort,” she said.

“I hate the idea of young people being made to feel like they’re not strong enough. That’s the underlying message I got from many doctors.

“They might not have said it outright, but it felt like, ‘This happens to every woman. If you can’t handle it, something is wrong with you’. I was just told to take painkillers and get on with life.”

While Endometriosis Australia’s tagline is ‘Period pain shouldn’t stop your life’, it did for Amelia.

“It got to the point where I had to cancel plans during ovulation and menstruation — essentially half my life,” she said.

“One of my GPs said, ‘If you’re losing two weeks every month, that’s half your life gone’. And still, no-one could explain why some months were worse than others.

“This is a real condition that needs more research. So many of us suffer in silence, trying to push through the pain while feeling like we’re not doing enough. That’s heartbreaking.”

Receiving an endometriosis diagnosis in Wagga Wagga was particularly difficult for Amelia. The condition can only be definitively diagnosed through laparoscopy, and patients in regional areas are often referred to specialists in larger cities.

Since her diagnosis, Amelia has undergone five surgeries and has been travelling to Albury for treatment for the past 10 years.

“Once you find a good doctor, you don’t want to lose them,” she said. “However, the reality is that rural and regional areas are missing out on proper care.”

Despite discussions about IVF due to the severity of her condition, Amelia said she was lucky to conceive her son naturally.

“Given my history of surgeries, I was told getting pregnant naturally and carrying to full term would be difficult,” she said.

“But it happened. Unfortunately, we haven’t been able to have a second child despite several IVF cycles. Endometriosis plays a huge role in that.”

Despite the lengthy and arduous process of diagnosing the condition, recent breakthroughs concerning endometriosis have provided hope for patients — the first significant advancements in three decades.

In December 2024, the Department of Health and Aged Care announced that women living with endometriosis can now access a new treatment under the Pharmaceutical Benefits Scheme.

A study published last month in the international journal Human Reproduction detailed that Australian researchers have developed a noninvasive, cost-effective blood test that is highly predictive of endometriosis diagnosis.

Amelia welcomed the breakthrough.

“It’s a positive direction; a combination of blood test and ultrasound is not as invasive as the laparoscopy,” she said.

Amelia also advocates a pelvic pain clinic in Wagga as one of the best practices for endometriosis care.

Current treatments include pelvic floor therapy, physiotherapy, dietitian support, GP visits (rather than just an obstetrician-gynecologist), medication, and counselling.

“These treatments can be expensive, especially if needed weekly or fortnightly, making it unsustainable for many people,” she said.

With the government announcing expansion for pelvic clinics over the next three years, Amelia hopes Wagga will be on the list.

“It would be a significant improvement.”

There are 22 specialist endometriosis clinics nationwide, and the closest clinic to Wagga is Canberra, a three-hour drive away.

March is Endometriosis Awareness Month. You can read more about endometriosis on the healthdirect website.