Until There’s a Cure, There’s Care

What Is Endometriosis?

Endometriosis is a chronic, inflammatory, whole-body condition that affects an estimated one in seven women and people assigned female at birth in Australia. It occurs when tissue similar to the uterine lining grows outside the uterus, often on organs such as the ovaries, bowel, or bladder. Each month, this tissue responds to hormonal changes, thickening and bleeding, but unlike menstrual blood, it has nowhere to go - causing inflammation, scar tissue, cysts, adhesions, and pain.

Symptoms vary widely. While some experience excruciating pain, others may have minimal discomfort. Common symptoms include:

• Pain before, during, or after menstruation
  
  
• Chronic pelvic or lower back pain
  
  
• Painful intercourse
  
  
• Fatigue and brain fog
  
  
• Nausea and bowel or bladder pain
  
  
• Infertility or difficulty conceiving
  
  

Despite being as common as asthma or diabetes, endometriosis remains poorly understood, with no known cause or cure. Myths persist, such as the belief that pregnancy or hysterectomy can “cure” the condition, leaving many people confused, isolated, or untreated for years.

The Seven - Ten Year Diagnostic Delay: Why It Happens

On average, it takes 7 to 10 years from the onset of symptoms for a person with endometriosis to receive a diagnosis. This delay has devastating consequences - worsening disease progression, reducing fertility, and significantly impacting mental health, education, and employment.

Several factors drive this delay:

• Normalisation of pain: From adolescence, many people are told that period pain is “normal,” leading them to minimise symptoms.
  
  
• Stigma and silence: Cultural discomfort around menstruation and reproductive health often prevents open discussion or help-seeking.
  
  
• Knowledge gaps in healthcare: While awareness is improving, endometriosis has historically received limited medical education and research attention.
  
  
• Diagnostic limitations: The “gold standard” diagnostic method - laparoscopic surgery can be costly, invasive, and often requires long wait times.
  
  
• Gender bias in medicine: Women’s pain has been under-recognised, with many reporting being dismissed or misdiagnosed with anxiety or IBS before being referred to a specialist.
  
  

“Suggesting that pain is psychosomatic or psychological can negatively impact a patient’s quality of life. Listening and believing patients is the first step toward change.”
QENDO National Guide (2025)

The Need for Further Research and Systemic Change

Endometriosis costs the Australian economy more than $7 billion per year, largely due to productivity losses, absenteeism, and healthcare expenses. Yet research funding and public awareness remain disproportionately low compared to its impact.

There is still no known cause - though genetic, immune, hormonal, and environmental factors are being explored. Treatment remains focused on symptom management, using a combination of pain relief, hormone therapy, surgery, physiotherapy, psychological care, and lifestyle changes.

The lack of consistent, evidence-based care pathways means many people bounce between clinicians for years without coordinated management. Multidisciplinary and trauma-informed care; combining gynaecology, physiotherapy, dietetics, psychology, and nursing offers the most effective approach.

Breaking Down Barriers to Care

QENDO’s 2024 Raise Your Voice survey found five key barriers to health and wellbeing for people with endometriosis and pelvic pain:

1. Limited access to affordable healthcare and allied health services
   
   
2. Inconsistent understanding and recognition among healthcare providers
   
   
3. Poor access to pain management and mental health support
   
   
4. Lack of workplace flexibility and protections
   
   
5. Fragmented care - with few multidisciplinary pathways available
   
   

These barriers highlight why many patients feel left behind. For rural, regional, LGBTQI+, and culturally diverse communities, access to specialist care can be even more limited.

That’s where QENDO steps in.

‍QENDO Australia: Community-Led Care and Support

Founded in 1988, QENDO is Australia’s peak community organisation for those impacted by endometriosis, adenomyosis, PCOS, pelvic pain, and infertility. Their mission: to ensure that no one faces these conditions alone.

All QENDO services are free, inclusive, and evidence-based, developed in collaboration with clinicians, researchers, and people with lived experience.

Key Programs and Resources

• QENDOCare – A free, national telehealth clinic providing nurse-led and multidisciplinary support for patients awaiting diagnosis or ongoing care.
  
  
• QENDO Mentor Program – A six-week peer-mentoring program that connects individuals with mentors who’ve navigated similar journeys.
  
  
• ManageEndo – A digital education program offering over 20 expert-led tools and strategies to manage symptoms.
  
  
• QENDO App – A free self-tracking app used by over 24,000 people to monitor pain, bleeding, fatigue, mood, and more: empowering patients to share meaningful data with their healthcare teams.
  
  
• EndoAware Workplace Program – Tailored training to help organisations understand endometriosis, promote inclusivity, and support staff wellbeing.
  
  

“Until there’s a cure, there’s care. QENDO ensures that care is compassionate, accessible, and informed.”

For Health Practitioners: Be the Difference

General practitioners and allied health providers are in a unique position to reduce diagnostic delays and improve patient outcomes. Key actions include:

• Asking early and empathetic questions about period and pelvic pain
  
  
• Referring patients for specialist assessment when symptoms affect quality of life
  
  
• Collaborating across disciplines for holistic management
  
  
• Encouraging patients to use tools like the QENDO App and BRAINS framework (Benefits, Risks, Alternatives, Instinct, Nothing, Second opinion) to make informed decisions
  
  

“You can be the changing point,” QENDO reminds clinicians. “Each time a practitioner listens, believes, and refers, they shorten someone’s diagnostic journey.”

Building a Future with Better Awareness and Research

Endometriosis is one of Australia’s most common yet misunderstood health conditions, but change is happening. With increasing public awareness, national education programs, and community-driven organisations like QENDO leading the way, the conversation is finally shifting from “it’s just period pain” to “it’s time to act.”

Because every person deserves access to compassionate care, accurate information, and a future free from unnecessary suffering.

Until there’s a cure, there’s QENDOcare.

By QENDO Australia – National Endometriosis & Pelvic Pain Support Organisation

For Patients: You Are Not Alone

Endometriosis is not your fault, and you don’t have to endure it in silence. Whether you’re newly diagnosed or seeking answers, QENDO’s national network offers guidance, advocacy, and community.

📞 Helpline: 1800 ASK QENDO
🌐 Website: www.qendo.org.au
📱 App: Search “QENDO” in your app store
💌 Email: info@qendo.org.au