Empowering endometriosis decisions: How EndoOptions was created
For the 1 in 7 Australian women, girls and presumed female at birth, living with endometriosis, and making decisions about treatment can feel overwhelming, confusing and isolating. Professor Kerry Sherman, a researcher at Macquarie University dedicated to improving patient decision-making, is working to change that.
Drawing on her own lived experience and years of research developing decision-aid tools, Sherman has co-designed a new digital tool called EndoOptions to help people with endometriosis make decisions that reflect their values and priorities.
Funded in part by Endometriosis Australia, EndoOptions is the first online decision aid of its kind for endometriosis. It’s designed to help people navigate the complex range of treatment options, providing choice and control over their own endometriosis healthcare.
Why EndoOptions was created
Sherman’s work in endometriosis and other chronic illness areas showed her just how hard decision-making can be. “People felt overwhelmed, unsure what to trust and confused,” she explains. “They often felt left on their own to make decisions.” These concerns were shared by people with endometriosis, healthcare professionals in the field and studies examining the issue.
This experience inspired Sherman to explore the idea of a decision aid for endometriosis. She drew on her experience developing BRECONDA, a tool that supports surgical decision-making for people diagnosed with breast cancer, as well as a Dutch language version of BRECONDA, and HearChoice, a decision aid for people with hearing loss. Using these successful models as a guide, Sherman imagined a tool that could help people with endometriosis make choices that reflect their values, preferences and individual circumstances.
Co-designing with the Endo community
EndoOptions was developed in collaboration with both health professionals and people with lived experience of endometriosis. Clinical experts such as Professor Jason Abbott (endometriosis specialist surgeon), Associate Professor Mike Armour (an endometriosis specialist with a focus on complementary therapies), Associate Professor Leesa van Niekerk (psychology) and Ruth Schubert (pelvic physiotherapy) provided essential guidance.
Equally important were the voices of people living with endometriosis, from different backgrounds, ages and locations. They took part in focus groups, reviewed content and offered suggestions that helped shape the final resource. “Their input was critical,” Sherman says. “They helped develop the tool to reflect real-world needs, adding important considerations like cost and access.”
The module content was drafted by the research team following an extensive literature review of peer-reviewed journal articles – including randomised controlled trials, systematic reviews and case studies. They also drew on existing resources, such as the Endometriosis Australia website and current RANZCOG guidelines.
How EndoOptions works
The EndoOptions website is designed to be accessible, with content written at a level most people can understand. It takes a holistic, non-prescriptive approach to treatment, encouraging people to explore a range of options in partnership with their healthcare professionals.
How EndoOptions supports decision-making
Clarifying what matters
EndoOptions begins by helping people think about what’s important to them – whether it’s symptom relief, fertility, work-life balance or emotional wellbeing. They can choose from preset values or add their own. When considering options for managing endometriosis this helps the user think about what’s important to them personally.
Exploring management options
EndoOptions then offers a wide range of treatment options, from medication and surgery to physiotherapy and complementary therapies. Each option includes:
- A brief overview and how it’s administered
- Information on how to access it (e.g. over-the-counter, GP, specialist)
- Cost considerations
- Pros and cons, including benefits and side effects
Learning through multimedia
Videos featuring both people with endometriosis and healthcare professionals explain why certain treatments, such as pelvic physiotherapy, may be helpful. Short quizzes help users check their understanding.
Comparing and reflecting
A summary table lets people compare their chosen options, making it easier to weigh up the benefits and side effects, and think through their choices.
Creating an action plan
Finally, the tool builds a personalised plan with users selecting preferred options and setting a follow-up date.
Designed for flexible, inclusive care
EndoOptions isn’t just for people who are newly diagnosed with endometriosis. It can be helpful at any stage of the endometriosis journey, whether someone is exploring new treatments, rethinking their current plan, or simply looking for clarity. Each treatment option takes only 10–15 minutes to review, making the tool manageable for those who are short on time or energy.
One of the strengths of the digital decision-aid is that you don’t need a formal diagnosis to benefit from using EndoOptions. “If someone has symptoms, but hasn’t been diagnosed, they can still explore options like physiotherapy,” Sherman explains. “It’s up to the medical professional to decide what’s appropriate, but there’s no harm in looking.”
A tool guided by lived experience
Sherman’s motivation for this project comes from her own experience. She knows first-hand what it’s like to have symptoms dismissed as “normal.” That frustration of not being heard has shaped her commitment to create tools that support and empower people to make decisions about their care. “EndoOptions helps people explore management options based on their budget and preferences,” she says. “It’s about giving people confidence and support to make choices that feel right for them.”
A new era of Endo care
EndoOptions is a shift in how people with endometriosis are supported when making decisions about their symptom management. Instead of a one-size-fits-all approach, it recognises the complexity of the condition and the uniqueness of each person’s experience. Built on empathy, evidence and collaboration, the tool is designed to make a real, meaningful difference in decision-making about endometriosis care.
“Most people have a general idea of what they want and prefer,” Sherman explains. “EndoOptions helps turn that into a clear plan.”
Next step
With the website built and initial feedback collected, the next step is a randomised controlled trial. Sherman and her team plan to recruit about 200 participants from the endometriosis community to test how well EndoOptions works. The trial is expected to start in early 2026 and run for about 6 months.
Sherman is also working with Endometriosis Australia to figure out the best way to make the tool widely available. “Ideally, we see that it should be available through both healthcare providers who can introduce EndoOptions to patients, and also through online endometriosis communities such as Endometriosis Australia,” Sherman says.
To learn more or participate in the upcoming EndoOptions trial, contact Kerry Sherman on [email protected].
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