By Jessica Taylor
Chief Executive Officer
QENDO

Endometriosis is a chronic condition affecting an estimated 1 in 10 women of reproductive age worldwide. Despite its prevalence, many women face significant delays in receiving a diagnosis. These delays, often spanning years, can have profound impacts on quality of life, physical health, and mental well-being. As the national support service provider, QENDO provides support, education and awareness for anyone who is affected by endometriosis, adenomyosis, PCOS or infertility across Australia and New Zealand. QENDO understands the frustrations and challenges these delays present, as they resonate deeply with the experiences shared by our community.

The Diagnostic Journey: A Complex Path

The path to an endometriosis diagnosis is rarely straightforward. It often involves multiple healthcare providers, extensive testing, and, unfortunately, frequent misdiagnoses. One of the most significant challenges is that the symptoms of endometriosis—such as pelvic pain, heavy menstrual bleeding, and infertility—can mimic those of other conditions or co-exist with other conditions, leading to diagnostic confusion.

Research indicates that the average time to diagnose endometriosis is around 7-10 years. This prolonged period can be attributed to several factors, including the normalisation of menstrual pain, limited awareness about the condition among both patients and healthcare providers, and the inherent complexity of diagnosing endometriosis.

Misdiagnoses and Assumptions: A Closer Look

A common theme among those with endometriosis is the experience of being misdiagnosed or having their symptoms attributed to psychological factors. This can be particularly disheartening, as it not only delays appropriate treatment but also undermines the patient’s experience and credibility.

For instance, it’s not uncommon for individuals with endometriosis to be diagnosed with conditions such as irritable bowel syndrome (IBS), pelvic inflammatory disease (PID), or even psychological disorders like depression or anxiety before receiving an accurate diagnosis. These misdiagnoses stem from the overlapping symptoms of these conditions and the lack of specific, non-invasive diagnostic tools for endometriosis.

Additionally, assumptions about psychological factors can play a role in diagnostic delays. When patients report chronic pain, especially women, there is a historical tendency within medicine to attribute these symptoms to stress or emotional issues. While psychological factors can undoubtedly influence physical health, this bias can lead to significant delays in diagnosing conditions like endometriosis.

The Impact of Delayed Diagnosis

The consequences of delayed diagnosis are far-reaching. Prolonged pain and discomfort can severely affect an individual’s physical and mental health, leading to issues such as chronic pain syndromes, depression, and anxiety. Furthermore, delayed diagnosis can impact fertility, making it more challenging for those with endometriosis to conceive.

From a socioeconomic perspective, delays in diagnosis also result in increased healthcare costs due to repeated consultations, tests, and treatments for misdiagnosed conditions. Additionally, there is often a significant impact on productivity and career progression, as individuals may need to take extended time off work due to their symptoms. Latest sector “Living with endometriosis snapshot”.

A Balanced Perspective: Challenges in Diagnosing Endometriosis

While it is important to acknowledge these issues, it is equally crucial to approach the topic with a balanced perspective. Healthcare providers work within a complex system with numerous challenges, including time constraints, resource limitations, and the inherent difficulties in diagnosing a condition like endometriosis, which currently lacks a definitive, non-invasive diagnostic test.

Medical professionals are generally dedicated to providing the best care possible, and many are aware of the challenges associated with diagnosing endometriosis. Efforts are being made to improve awareness and education about the condition among healthcare providers, and research is ongoing to develop better diagnostic tools.

Moving Forward: Advocacy, Education, and Support

QENDO believe that addressing the delays in diagnosing endometriosis requires a multifaceted approach. Advocacy, education, and support are key components of this effort.

Advocacy: To continue to advocate for increased research funding and policy changes that support timely diagnosis and effective treatment of endometriosis. By raising awareness at a governmental level,  QENDO aim to influence changes that will benefit those living with the condition.

Education: Educating both the public and healthcare providers about endometriosis is crucial. For the public, understanding that severe menstrual pain is not normal and seeking medical advice early can lead to earlier diagnosis. For healthcare providers, ongoing education about the symptoms, diagnostic challenges, and latest research findings can enhance their ability to diagnose and manage endometriosis effectively.

National Resource Guide: https://www.qendo.org.au/

Support: Providing support to those affected by endometriosis is at the heart of  QENDO’s mission. Through our support groups, informational resources, and advocacy efforts, they aim to empower individuals with endometriosis to take control of their health and well-being.

Refer to the below free programs for support for patients and carers: