Endometriosis affects 54,000 South Australians, but it’s still a mystery to many. As a landmark inquiry investigates how to tackle the disease’s impact, we talked to author, performer, comedian and health advocate Libby Trainor Parker about living with endo – and fighting for change.
What is endo, exactly?
Endometriosis, or ‘endo’, is a painful illness that affects one in seven Australian women and people assigned female at birth (AFAB). It’s a chronic, painful condition where tissue similar to the uterine lining grows outside the uterus in other parts of the body, usually in the pelvis.
It’s a progressive and chronic condition, meaning it gets worse over time. It’s more common than asthma or diabetes among Australian women and AFAB people, but it’s much less understood. There’s no known cause or cure.
Endo is also a disease that hits everyone differently. Some people have no symptoms, while others suffer from intense pain that never lets up. Common endometriosis symptoms include:
- Really bad period pain
- Pain when you go to the toilet
- Heavy or irregular periods
- Pain during sex
- Low energy
- Difficulty getting pregnant
The devastating impact
Around one million Australian women and AFAB people live with endometriosis. More than 40,500 Australians are hospitalised each year because of the illness.
One in three women with endometriosis struggle with fertility or are unable to become biological mothers. As well as the individual suffering, endo’s economic impact is huge, costing Australia $9.7 billion each year.
What’s the state government doing?
Right now, a landmark South Australian parliamentary inquiry is focused on making life easier for locals with endometriosis. The Parliamentary Select Committee into Endometriosis has been set up to find out exactly how women and gender diverse people are affected by endo, what the barriers are to getting treatment, and what reforms could make life easier for South Australians with the illness. This includes exploring the latest research into the disease and how we can improve access to care.
Endometriosis sufferer Libby Trainor Parker says the parliamentary inquiry is a signal to the endo community to know they are not alone and that there is hope. “It’s a great thing,” she says. “All this awareness and all this noise happening at the moment is spectacular.”
As for outcomes, she hopes the inquiry will highlight just how huge the impact of endometriosis is and how much needs to be done to help. “We’re getting there. There’s a lot happening, but we could do a lot more,” she says.
“We need action. I want to see education for GPs and nurses and staff, because there are so many people presenting to emergency or going to doctors with this pain and being told to take some Panadol and go home.” More than 70 per cent of endo-related visits to Australian emergency departments end with the patient leaving without being admitted or referred for treatment elsewhere.
Libby says more funding for endo research is also needed. “This is important stuff. There’s been a good start but so much more needs to be done.”
Libby’s story
It took Libby 22 years to be diagnosed with endo at age 36.
“That means a lifetime of living in pain and being told that it was anxiety and stress and all in my head,” she says. One doctor even dismissed her ongoing pain as “just getting her knickers in a twist”.
“I spent years meditating, trying to find inner peace and work out what I was so upset about that was causing this terrible, debilitating pain. But I think when you spend a long time trying to fix a head that isn’t sick, your head does get sick. I was thinking I was mentally ill.”
From patient to advocate
Because of endo, Libby was forced to quit full-time teaching and suffered a heartbreaking 11 pregnancy losses. When she was finally diagnosed, she couldn’t suffer in silence – she wanted to spread the word about endo so other South Australians wouldn’t go through what she had.
Libby was a driving force behind getting endo education into South Australian schools, and then schools all around Australia, thanks to PPEP Talk (Periods, Pain and Endometriosis Program), which she co-wrote.
With husband Matthew Trainor, she’s also the co-writer, creator and star of award-winning comedy cabaret Endo Days, designed to make endo education funny and entertaining. So far it’s enjoyed four sold-out Adelaide Fringe seasons, and more performances are planned. “The show’s been so good for people to build a community, raise awareness and give them hope,” she says.
Her book, Endo Days, was published last year after the success of her cabaret show. It tells Libby’s story, but it’s also the product of interviews with ‘endo friendos’ from across Australia, including the experiences of trans, queer, neurodivergent, younger, older, First Nations, metropolitan and rural Australians.
“I learned that it doesn’t matter about your background or location, the stories are all so similar – they’re about waiting years and years to be diagnosed, being told the pain was all in their head, being unable to work or go to school, and relationships breaking up – all because of endo.”
Getting a diagnosis and treatment is tough
It takes an average of 6.5 years to get an endometriosis diagnosis. Because the symptoms can be similar to other conditions, endo often gets misdiagnosed or women are told their pain is “normal”. Doctors are getting better at spotting endo by its symptoms, but it still takes surgery for a definitive diagnosis.
Libby says there are treatments that can help to manage the pain and other symptoms, but they don’t always work. “It’s very different for everybody,” she says. Current treatment options include pain medication, hormone therapy, surgery and complementary treatments, like physiotherapy and psychology. Libby says many of the treatments are really expensive, and hard to access in regional South Australia.
Things can only get better
“Doctors often dismiss endo as period pain or tell us we just have to learn to be tougher, but I think the tide is changing there. We’re actually realising that if you can’t get out of bed, or you can’t walk because it’s so debilitating, it’s not just period pain.
“I really do think things are getting better. I think we are really moving forward in endo education and awareness. I think that there’s also taboos being lifted, which is great. We talk about periods more.
“We’ve also got a generation of young people coming through now who are more aware and body positive so they’re talking a lot more about it. And they’re demanding action, which I think is superb.”
Libby’s ultimate hope is that she’ll live to see a time when the stigma has completely gone, and endo is just part of mainstream conversation like any other common illness. “One day, hopefully, we’ll talk about endo the same way we’re able to discuss asthma because we’ll all be educated,” she says.
Have your say
The parliamentary committee wants to know how endo has impacted your life. Did it delay your education? Hold you back in your career? Affect your relationships or mental health? Share your experiences in a written submission by 31 May. Find out how to submit here.
Libby says making a submission can help create real change. “We need to be heard, and we need our voices to be amplified,” she says. “In order to get things done, we need to tell our stories. When you’ve got this in your body, you are the expert of your body. We need to tell our stories so that the people can hear what changes need to be made.”
Where to get help
If you think you have endometriosis, you should see your doctor to discuss your symptoms.
There’s also help and information available online:
- Endometriosis Australia has great resources available, including a podcast, endo-friendly workouts and a workplace assistance program.
- Endozone is the place to go for evidence-based answers to all your endo questions.
- This symptom checker lets you create a report for your doctor to help get you diagnosed faster and treated more effectively.
- Raising Awareness Tool for Endometriosis (RATE) is another handy tool, created by Australian gynaecologists to help your GP identify and assess your endometriosis symptoms.
- Qendo offers the first Australian endo app to help you manage and track your symptoms.
- Endo Support SA is an online support group for South Australians living with endometriosis.
