Giving a voice to women’s hidden pain
A deeply personal and often unspoken aspect of endometriosis is being brought into focus by CQUniversity HDR Masters graduate Emily Dickson, whose research is shining a light on the lived experiences of women navigating painful intercourse linked to the chronic condition.
Affecting around one in seven Australian females, endometriosis is a debilitating and life-altering disease that remains significantly under-researched.
For Emily, the motivation to explore the condition - and specifically dyspareunia (painful intercourse) - was sparked by a growing awareness of the gender gap in health research.
“I kept coming across how little we understand about women’s health, and endometriosis came up again and again,” Emily said.
“The more I read, the more I wanted to contribute to the research space and help improve health outcomes for women.”
Her study explored how Australian women experience help seeking for endometriosis-related dyspareunia, a symptom affecting up to 70 per cent of those with the condition, yet one that is rarely discussed.
“Despite being one of the most common symptoms of endometriosis, it often goes unspoken and undertreated,” she said.
“There’s a broader social stigma around women’s sexuality, and a concerning normalisation of pain - where women are led to believe that discomfort, even during sex, is something they should expect or tolerate.”
Through in-depth, one-on-one interviews, Emily created a safe space for participants to share their experiences, uncovering five key themes in the experiences:
- health system complexities
- normalisation of pain
- emotional impacts
- self-coping strategies
- effective forms of support.
Her findings reveal a healthcare system that is often difficult to navigate, with women experiencing vastly different - and frequently frustrating - pathways to diagnosis and care.
“Many women spoke about having their pain dismissed as ‘just period pain’ or feeling like they weren’t being taken seriously,” she said.
“That normalisation can delay help-seeking and contribute to ongoing physical and emotional distress.”
Despite these challenges, Emily said she was struck by the resilience of participants, particularly their ability to develop their own coping strategies in the absence of adequate support.
“It really highlighted the ingenuity and strength of those managing this condition,” she said.
The research also underscores the importance of compassionate, patient-centred care, with participants identifying empathy, validation and active listening as critical factors in positive healthcare experiences.
“Women communicated that the most helpful support came from people who genuinely listened and acknowledged their pain - both in clinical settings and in their personal lives,” Emily said.
She is now calling for a shift towards more gender-responsive healthcare, including improved Medicare support for specialised services, better training for clinicians in empathetic communication, and clearer referral pathways for holistic care.
“If there’s one message for healthcare professionals, it’s to listen to women, take their pain seriously and help guide them through the next steps,” she said.
Emily hopes her research will encourage more open conversations about the sexual wellbeing aspects of endometriosis and help break down long-standing taboos.
“Pain during sex isn’t normal, and women should know they’re not alone and that support is available,” she said.
Having recently completed her RHD Masters, Ms Dickson is eager to continue working in women’s health and other under-researched areas, including health outcomes for sex workers and LGBTQIA+ communities.
“I feel incredibly privileged that women trusted me with their stories,” she said.
“If this research leads to even one change, I hope it’s that women are listened to, believed and supported when they speak about their pain.”
