Supporting patients with endometriosis: a resource guide for general practice

Endometriosis in general practice

Endometriosis is a common, chronic condition that sits squarely within everyday general practice. 

With Endometriosis Awareness Month bringing renewed attention to the condition, there is an opportunity for general practice to strengthen how patients are supported from first presentation through to long-term care.

It may present as severe dysmenorrhoea, persistent pelvic pain, fertility concerns, fatigue or mood disturbance associated with ongoing symptoms.

It may present as severe dysmenorrhoea, persistent pelvic pain, fertility concerns, fatigue or mood disturbance associated with ongoing symptoms.

Despite increased awareness, diagnosis still takes an average of 6 to 8 years. During that time, many patients move through repeated consultations without a clear explanation of their symptoms or a defined management pathway.

The condition affects an estimated 1 in 7 Australian women and people assigned female at birth by middle age, according to the Australian Institute of Health and Welfare. Its impact extends well beyond menstrual pain to fertility, bowel and bladder function, sexual health, mental wellbeing and workforce participation.

For many patients, the GP is the first and most consistent point of care. The opportunity in primary practice is not only early recognition, but structured coordination: clear explanations, defined next steps and access to reliable resources that support long-term management.

Clarifying the condition

Even where endometriosis is suspected or diagnosed, patients frequently report confusion about what the condition means.

Jess Taylor, CEO of QENDO, says “the most common gaps we see are understanding what endometriosis actually is.”

“Many patients leave appointments unsure whether it is a ‘bad period,’ a fertility condition, a chronic pain condition, or something else entirely.”

Clear explanation at the outset is critical. Patients benefit from understanding:

• That severe menstrual pain is not typical
• That imaging has limitations
• That symptoms may fluctuate
• That management is often long term and multidisciplinary

Providing this context early reduces uncertainty and supports informed decision-making.

Clarifying next steps and referral pathways

Uncertainty often increases if the pathway forward is not clearly defined.

Taylor says GPs can help to provide “clarity about next steps – patients frequently report not knowing what the care pathway looks like: when to refer, what allied health can offer, how pain can be managed, or how to monitor symptoms over time.”

Structured communication can reduce this uncertainty.

Practical strategies include:

• Outlining an initial management plan in writing, including review timeframes
• Explaining the rationale for investigations such as pelvic ultrasound or referral to gynaecology
• Identifying allied health options such as pelvic physiotherapy, psychology, dietetics, pain specialists and fertility services where relevant
• Preparing patients for likely waiting periods and interim symptom management

Referral letters that document symptom duration, impact on daily function and previous treatment responses support more effective specialist triage.

GP’s can use the QENDO referral hub to connect patients with national education programs and structured support services alongside clinical care.

Validation and trauma-informed communication

Many patients describe feeling dismissed before diagnosis. Early validation and consistent follow-up reduce internalised doubt and improve engagement.

Taylor encourages practices to recognise that “primary care plays a pivotal role in early recognition, trauma-informed communication, structured referral pathways and multidisciplinary coordination.”

For practice teams, this may involve reviewing consultation language, ensuring sensitivity at reception and offering longer appointments where complexity warrants.

Clear explanation, defined next steps and curated resources can significantly reduce uncertainty for patients navigating a prolonged journey.

Using patient-ready resources to reinforce care

Patients managing a chronic condition require reliable and accessible information.

Taylor notes “patients often tell us that receiving something tangible to review after an appointment significantly improves understanding and reduces overwhelm.”

GPs can integrate curated resources without extending consultation time by:

• Embedding approved links into electronic medical record templates
• Using automated SMS or email systems for follow-up information
• Highlighting one or two trusted tools at the end of the consultation

Providing selected, reputable resources reduces reliance on unverified online content and reinforces consultation messages.

Resource list for general practice

The following Australian organisations provide evidence-informed, patient-ready tools suitable for sharing during or after consultation.

These can be embedded into templates, sent via SMS or email, or printed for in-consultation use.

1. QENDO app: A free digital symptom tracking and journalling app designed for people living with endometriosis and pelvic pain. Supports structured tracking of pain, bleeding, bowel and bladder symptoms and medication use.
2. QENDOCare: A guided care navigation program connecting patients with structured education, resources and support pathways.
3. ManageEndo: An evidence-based education program focused on self-management strategies and pain literacy.
4. QENDO support line: A free national support line providing information and referral direction.
5. Endometriosis Australia factsheets and downloads: Plain-language factsheets covering symptoms, diagnosis, fertility considerations, workplace impacts and management options.
6. Jean Hailes for Women’s Health endometriosis patient guidebook: A comprehensive guide offering structured information on diagnosis, treatment pathways and lifestyle considerations.

​​Strengthening care through clarity

For patients with endometriosis, the experience of care often comes down to three things: being believed, being informed and knowing what happens next.

General practice is uniquely positioned to shape that experience.

Clear explanation, defined referral pathways and access to reliable resources create a more structured and supportive care journey. When patients understand their condition and their options, uncertainty reduces and engagement improves.