When Emily Kopp was in Year Five, she was thrust into the world of womanhood through the experience of extreme and debilitating pain.
Despite their severity and the toll they were taking on her health and mental well-being, Kopp's symptoms were dismissed, trivialised, and, most concerningly, left untreated by doctors.
At 19, Kopp's life was put on hold as she found herself bed-bound six days a week. It would take a difficult appointment with a gynaecologist before the word endometriosis was first mentioned, and another two years before she was officially diagnosed during a laparoscopy.
"Suddenly, 2021 was a whirlwind: I had my first endo surgery, and I was diagnosed with stage four of the disease," Kopp recalls.
In Australia - and across the world - Kopp's experience of navigating endometriosis is far from unique.
In endometriosis, uterine-like tissue grows outside the uterus in the pelvic and abdominal cavities, where it can cause pain, inflammation, and fertility problems. According to Endometriosis Australia, the condition affects 1 in 7 people identified female at birth.
Despite its prevalence, diagnosis is often delayed. Research from the Australian Institute of Health and Welfare shows it takes an average of six to eight years from the onset of symptoms to receive a diagnosis.
During this time, many patients face chronic pain, fatigue, digestive issues and fertility challenges, often while still working or studying
And even after surgery, the journey is far from over.
Kopp says that while the operation removed a substantial amount of the disease, she continued to face chronic pain and ongoing medical challenges.
Emily Kopp first started experiencing pain in Year Five. Image: supplied
"By the time I finally had surgery, the endometriosis was on my bowel, my bladder, and my left ovary, which was completely stuck to my left side wall. My right ovary had an endometrioma in it that was too small to be removed during surgery.
"Post-surgical photos of my internal organs looked like someone had taken a bulldozer through it."
Devastatingly, it only took one month post-surgery for Kopp's endometriosis to return.
"I don't trust doctors in the slightest. When I had pain again, my doctor dismissed it as just nerve pain.
"I had to get a second opinion to get answers where another gynaecologist diagnosed me with adenomyosis, colloquially known as the evil twin sister of endo."
But in the face of mistrust and the trauma that can come from a prolonged diagnosis, Kopp was determined to be part of creating change.
During her time as a student at Macquarie University, she became familiar with the work of Professor Kerry Sherman, in the School of Psychological Sciences, who is revered for her work in women's health and breast cancer research.
When Kopp learnt that Sherman's work also extended to endometriosis, she didn't hesitate to get involved.
"I found out she was working on endo around the same time that I was getting suspected endo diagnoses, and I really wanted to have a chat with her and get involved with her work, because I knew that my experience wasn't uncommon."
Sherman and Kopp are now focusing on creating accessible, barrier‑free support for patients before and after diagnosis - most recently through a new text support line.
Professor Kerry Sherman is revered for her work in women's health and breast cancer research. Image: supplied
"What our team has done is developed a text message intervention called Endo SMS, and essentially that's designed to help some fill some of the gaps that will arise in between people's visits to their medical health professional," Sherman says.
"It's designed to be psychologically supportive for people to almost feel like someone is reaching out to them."
It's a meaningful start, but much more is needed to address the mental health and cognitive effects of endometriosis.
"If we look at our studies, it's typically people who are in their 20s and 30s - maybe into their 40s - who are reporting experiencing cognitive difficulties, such as brain fog, which is similar to those we might see in older people and those with breast cancer who have been undergoing chemotherapy treatments," Sherman says.
"Our research has also identified that along with experiencing cognitive difficulties, people with endometriosis experience very high fatigue and depressive symptoms."
Sherman is also leading EndoOptions, a new project helping people make informed decisions about managing endometriosis.
"We are in the process of starting a randomised controlled trial for this comprehensive web-based resource. EndoOptions takes a holistic approach that provides information about managing endometriosis in an easy-to-access way to help individuals better manage their symptoms".
Kopp says she hopes this leads to better treatments and support for future patients.
Reflecting on what her Year Five self would have needed, she adds: "Listen to women when they say they are in pain -- trust the symptoms, trust the individual."
Interested in being part of the EndoOptions endometriosis clinical trial taking place at Macquarie University? Email Kerry Sherman at [email protected] to learn more
