“Women Have Had To Suffer In Silence”: Sophie Dillman Demands Change For Endometriosis

Home and Away actor Sophie Dillman is posting every single day this March for Endometriosis Awareness month, and while it can get tiring and tough to have the public's attention on your body and illness, she'll never stop fighting for change. Endometriosis is a chronic condition that occurs when tissue similar to what's found in the uterus grows outside of the uterus and doesn't leave the body. It can cause severe pain, heavy periods, infertility, bloating and more, as well as having a negative impact on mental health. It affects one in seven women in Australia, yet there can still be a barrier to getting diagnosed.

Dillman had issues with her first two gynecologists dismissing her concerns about her level of pain and scar tissue, but used her knowledge as a nursing student to fight for more tests. "Originally, the doctor told me that I didn't have endometriosis, that it was just scar tissue from having my appendix out when I was a kid. And I was like, that doesn't sound right," the actor tells Refinery29 Australia. "I [told her to] send it to the lab... and it came back with it, positive for endometriosis. I can't believe that I had to be a nursing student in order to fight for that, because otherwise I wouldn't have [been diagnosed]." The exact same situation happened with her second gynecologist in Sydney, who kept trying to convince Dillman that there was no endometriosis, just scar tissue. "If it's happening to me like this, this must be happening to so many people. I still get doctors who won't prescribe me proper pain medication."

Part of the reason endometriosis is underdiagnosed and misunderstood is the sheer amount of medical misogyny in our healthcare system. We're often dismissed as being "hysterical" or told that extreme period pain is normal. A recent study also showed that women and men are treated differently by doctors when pain is involved. When waiting for the doctor, women are left approximately 30 minutes longer than men, and men are more likely to be given pain medication than women. This doesn’t seem to be a coincidence, but rather a societal problem. “Women are viewed as exaggerating or hysterical and men are viewed as more stoic when they complain of pain,” co-author Alex Gileles-Hillel told Nature. Add the gender health gap to that, and women (and people with uteruses) are falling through the cracks.

Endometriosis affects cisgender women, transgender men and non-binary people with uteruses, but historically, medical research has focused on diseases that affect men. According to a report from the McKinsey Health Institute, women spend 25% more time in “poor health” compared to men. McKinsey also claimed that only “1% of healthcare research and innovation is invested in female-specific conditions beyond oncology”. Drug research trials also favour men. "Drugs are optimised from the beginning to work on male bodies," Professor Brian Prendergast told UChicago News. "For much of the time it’s been practised, biomedical science has been done by men, on men." It shouldn't come as a surprise that when the majority of drug trials are done on male subjects, women end up receiving the wrong dosage of medication or end up with worse side effects. No wonder we're all feeling fed up with the system.

"If [endometriosis] affected men, it would be cured by now. Without question, there would be paid period leave if men had periods," Dillman declares. "At the moment, we're desperately fighting to have a little bit of leeway. But not only like period leave, but people who are going through IVF, people who are suffering pregnancy loss." In fact, one of the studies about endometriosis from 2017 was focused on the impact on male partners. "Endometriosis also had an impact on men's emotions, with responses including helplessness, frustration, worry and anger," the study concluded. To have men centred when it comes to an issue that affects women, once again, is infuriating.

The actor adds that you also need a certain amount of privilege to cope with endometriosis. In Australia, a laparoscopy surgery — which can help with pain by removing or destroying endometriosis tissue or cells — is classed as a category three elective surgery in Australia. The surgery can be covered in public hospitals, but to avoid long wait times, the quicker option is to shell out for a private hospital. On top of this, a pathologist is often required to analyse the tissue samples, with only a small amount covered by Medicare. For Dillman's most recent endometriosis surgery, she was out of pocket and also spent three weeks in recovery. "You have to save up for the surgery. But how are you meant to save up for the surgery if you're in too much pain to work?" the actor asks. "You can't get that amount of time off work even with full sick leave. It's just awful."

As an actor, Dillman's job comes with different pressures, especially around her appearance. Endometriosis can cause inflammation and bloating throughout the body, which is tough when you're on camera. "It's a nightmare, because people literally ask me if I'm pregnant. And it's a fine line because I want to be really open about the disease and I want to bring awareness to it, but also it does make you feel shit when people are constantly criticising or making comments about what you look like," she says. It can get exhausting, but as an ambassador for Endometriosis Australia, the cause always wins out. "Awareness is key," Dillman says, mentioning how she's posting all throughout March about her own personal experiences with the condition. "Every day, without question, I have someone messaging me going, 'I didn't realise [your condition] was so debilitating'. Even good friends of mine [have] said, 'God, I didn't realise you were suffering that much'."

For too long, women have been expected to suck it up. We've had our pain dismissed and our emotions chalked up to hysterics. The system has been stacked against us this entire time, and we're still fighting for a voice. "Women have had to suffer in silence for so long, you know. It's just expected that women are in pain all the time," Dillman says. "We need more funding for endometriosis and just women's health in general."