- Posted on 24 Jul 2026
- 4-minute read
People living with endometriosis and persistent pelvic pain experience high rates of mental health challenges. However, care systems remain focused on physical treatment, leaving significant gaps in psychological support.
Rethinking care through lived experience
For many people living with endometriosis and persistent pelvic pain (EPPP), the impact extends well beyond physical symptoms. Pain affects mental health, relationships and daily life. Yet care has often focused on the medical condition alone.
At the University of Technology Sydney, Dr Shiraze Bulsara set out to change that.
Supported by a 2025 UTS Social Impact Grant, her research explores how mental health care can better reflect the needs of people living with EPPP.
“Too often, the mental health side of this condition is overlooked,” says Dr Bulsara. “We know the impact is significant, but services have not always kept up with what people actually need.”
A common condition with complex impacts
Endometriosis affects an estimated 11.4 per cent of women and those assigned female at birth. When combined with other causes of persistent pelvic pain, the number of people affected is even higher.
Despite this, support can be fragmented. Care is frequently centred on diagnosis and physical treatment. Many people are left to manage the psychological and social impacts on their own.
Dr Bulsara’s project responds to this gap by asking a simple question: What would care look like if it was shaped by lived experience?
Listening to understand
The research began with in-depth interviews with people who have experienced endometriosis and/or persistent pelvic pain (EPPP). Participants shared how pain shapes their mental health, work, relationships and sense of self. They also identified barriers to accessing care.
The response was both generous and revealing.
“The willingness of people to share their experiences was incredible,” says Dr Bulsara. “It reinforced how important it is to involve consumers in shaping research and care.”
Alongside these interviews, the team conducted an umbrella review of the evidence. This involved analysing 35 systematic reviews and meta-analyses to better understand the broader impacts of EPPP.
Together, these methods provided a detailed view of both lived experience and established research.
What the research found
The findings highlight that mental health is central to this condition, not secondary.
Across the interviews and the evidence base, four key areas emerged:
mental health and psychological wellbeing pain and its ongoing effects
quality of life and social functioning sexual health and relationships.
Participants described how these areas are closely connected. Pain influences mood. Mental health shapes how pain is experienced. Social impacts can deepen both.
The research also identified clear gaps in care. Many participants reported difficulty accessing appropriate mental health support. Others said that healthcare providers did not always recognise the full impact of their condition.
“There is a need for more integrated care,” says Dr Bulsara. “People should not have to navigate separate systems for physical and mental health.”
Findings from the umbrella review suggested a systems framework to examine and understand the interconnections among biopsychosocial outcomes associated with EPPP and proposed a model of integrated care. The project represents a truly multidisciplinary effort, drawing on expertise from clinical psychology, public health, general practice, exercise physiology, biostatistics and a community peer-led organisation.
A shift in thinking
One of the most important insights from the project challenged the research team’s assumptions.
The team initially expected that people would prefer shorter assessment tools to reduce burden. Instead, participants called for more comprehensive approaches.
They wanted tools that could capture the full range of their experiences, even if that required more time.
“That was a significant shift,” says Dr Bulsara. “People told us they want to be properly understood. That means going deeper.”
This insight is now shaping future plans to develop new assessment tools that reflect the cognitive, emotional and functional impacts of EPPP.
Building a case for change
While the research is still progressing through publication, its impact is already clear.
The findings provide strong evidence for greater investment in mental health care for people living with EPPP. They also offer practical insights for clinicians, researchers and policymakers.
Dr Bulsara is already applying these insights in her clinical practice. It is hoped the project can inform future research, policy development and clinical practice, including the potential to develop more inclusive assessment tools.
At a broader level, the project highlights the importance of consumer-led approaches in healthcare.
“When people are given the space to share their experiences, they offer insights we cannot get any other way,” says Dr Bulsara. “That is what drives meaningful change.”
With thanks to:
UTS contributors and partners
Dr John McAloon, Dr Oscar Lederman, A/Prof Kris Rogers, Professor Angela Dawson, Ms Jena Haidar, Dr Gemechu Wirtu, Ms Tiahna Ruane
External contributors or partners:
Professor Deborah Bateson, Professor of Practice USYD, Dr Joanna Lin General Practitioner, Dr Rebecca South General Practitioner, Jessica Taylor QENDO (CEO)
The grant application
Lecturer, Faculty of Health
This project was supported by a 2025 UTS Social Impact Grant.