Is endometriosis a chronic disease?

For someone who has been diagnosed with the condition, who continues to experience ongoing symptoms, the answer might seem rather obvious given the physical, social and psychosocial effects of this disease. Endometriosis is a condition where tissue similar to the lining of the uterus is found in places outside of the uterus, which can result in pain and adhesions. Symptoms of endometriosis may include: pain with periods, pain with intercourse, bladder and bowel symptoms, chronic pelvic pain, infertility or subfertility and fatigue. The gold standard for diagnosis is laparoscopy and at present, there is no cure. 

The study published in the Australian Health Review examined the definition of chronic disease within Australian policy documents. The core definitional elements of chronic disease included onset, causation, duration, treatment, disease course and impact (individual and societal).

When these elements were examined within the endometriosis context using peer-reviewed research and clinical practice guidelines it was found that endometriosis met five out of the six criteria. There was insufficient information regarding whether endometriosis was consistent with the ‘onset’ element of chronic disease.  

Whilst there are many theories about the cause of endometriosis none of these have been entirely proven although it is considered to be multifactorial, which is consistent with definitions of chronic disease. Additionally, chronic diseases are defined as long-term and persistent requiring ongoing management, which satisfies the duration and treatment elements of chronic disease definitions. There is currently no cure for endometriosis so people experiencing ongoing symptoms often seek long-term treatment to manage the symptoms of endometriosis (e.g. surgery, pain medications, hormonal treatments or complementary and alternative treatments). The condition may have significant impacts on the individual’s work, family and social life due to the varying symptoms that they may experience.  

As part of this study, the researchers from Monash University examined the four clinical practice guidelines that were available for use in Australia. Only one of these guidelines labelled endometriosis as a chronic disease. However, given that endometriosis meets most of the elements of chronic disease, the researchers argue that it would be useful to reframe endometriosis as a chronic disease in clinical practice guidelines, policy documents and information sources about the disease. 

Why does it matter what we call it? 

Language is important in how individuals and others identify with a concept. If someone mentions they have diabetes most people have heard of the condition and identify it is a long-term, chronic condition. When presenting to a health care provider diabetes is acknowledged as a chronic condition and the GP may prepare a chronic disease management plan or team care arrangement to assist with the management of this condition. These plans are mechanisms within the Australian medical system which provide for care coordination for this person with chronic disease. Additionally, a team care arrangement provides access to subsidised multidisciplinary care e.g. allied health services such as physiotherapy, diabetes education, podiatry, exercise physiologists.  

Reframing endometriosis as a chronic condition may assist practitioners to work with the patient to manage any ongoing symptoms. Any condition that lasts longer or is expected to last longer than six months that the GP feels would benefit from a multidisciplinary approach is eligible for a chronic disease management plan and team care arrangement. This may be useful for individuals who have endometriosis that are experiencing ongoing symptoms to access additional support services (e.g pelvic physiotherapy, psychology).  

As there is no cure for endometriosis and it can remain symptomatic despite medical intervention, it is important that it is recognised as a chronic disease. Awareness is slowly improving and the conversation is becoming more mainstream thanks to the efforts of advocacy groups and associations in Australia (e.g Australian Coalition of Endometriosis – ACE), researchers, media, personalities and individuals speaking about the disease. The launch of the National Action Plan for Endometriosis acknowledges the chronic nature of endometriosis. Minister Greg Hunt in a speech at the launch of the plan highlighted that individuals ‘should feel free to talk about this in the way that anybody might talk about a knee injury’. Therefore, reframing endometriosis as a chronic disease may assist with raising awareness, management in the health care system and provide further acknowledgement to individuals with the disease.

By Beck O’Hara
Endometriosis researcher | Health research and evaluation

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