Endometriosis: Home and Away star reveals ‘invisible' illness that left her clutching a hot water bottle on set
It's a condition that affects one in seven Australian women yet for decades, endometriosis has remained shrouded in silence, stigma, and misdiagnosis. But that could be about to change.
7NEWS can reveal a first look at a groundbreaking set of clinical guidelines that could revolutionise how general practitioners diagnose and manage the debilitating condition.
Actress Sophie Dillman, known for her role on Home and Away, has lived with endometriosis for more than a decade. On set, she often relied on a hot water bottle to get through filming.
'Those days, they can hurt, being on your feet all day, running up and down, changing costumes being in costumes that when I'm in a flare don't fit,' she said.
'I would walk around everywhere with a hot water bottle. We'd be rolling up and I'd pull the hot water bottle out of my pants and chuck it to the side and one of the camera assistants would grab it in between takes'
'I actually have permanent scarring on some parts of my belly because of using it for so long.'
Dillman says she's been suffering since her first period and it wasn't until she demanded doctors examine the possibility that she received an official diagnosis.
'They found what they thought was just scar tissue and I said 'no, I want you to test it, I think it is endometriosis' and I felt really strongly about that and it came back and it was endometriosis,' Sophie said.
'For another two of those surgeries, they woke me up and said 'it's not endometriosis, it's just scar tissue' and I said I've had to say that's what happened last time: that scar tissue needs to be tested and it came back positive for endometriosis'
Sophie is just one of millions of women living with this chronic and often invisible illness, which can take up to six years to diagnose.
What is endometriosis?
Endometriosis occurs when tissue similar to the lining of the uterus grows outside it, causing pain, fatigue and, in many cases, infertility.
Despite it affecting so many women, it has long been misdiagnosed and misunderstood.
'We've ended up with a whole area of medicine that's been neglected,' says Associate Professor Dr Magdalena Simonis, one of Australia's leading experts in women's health.
'If you go to any GP, you can expect to have pretty good treatment and management of your diabetes, whereas if you go in with endometriosis or women's health issues or pelvic pain or heavy menstrual bleeding, your experience of that as a patient will be very different, depending on who you see, and that's what we're trying to level out'
New guidelines
In what could be a turning point, Simonis and a team of experts are reviewing Australia's first national draft clinical guidelines to help GPs better identify and treat endometriosis faster.
They will outline critical diagnostic criteria, referral pathways, and improved GP education which could dramatically reduce diagnostic delays and offer clearer care pathways for women in pain, including a reference guide, flowchart and new resources for patients.
'Up until now, the research investment in women's health has been negligible,' Simonis says. 'That's done an enormous amount of harm.
'We're teaching the health profession to listen to women [and] take their presenting complaints really seriously because endometriosis will present in a variety of ways'
Dillman hopes the future for girls and women will be brighter.
'Get yourself checked, back yourself, you know your body better than anyone and if something doesn't feel right, keep pushing for an answer,' she pleaded.
'You don't have to live in pain, you shouldn't live in pain and it's not fair that we live in pain.'
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