Endometriosis: a hidden and misunderstood public health crisis

Women with endometriosis are unheard, ignored and overlooked

Many healthcare professionals and wider society are unaware of the impact of endometriosis, in part because it has been largely ignored in research and policy. This has led to the normalisation and stigmatisation of symptoms, which itself has resulted in women waiting an average of eight years to receive a diagnosis. One study found over 75% of participants had been misdiagnosed with a mental illness or different physical condition before receiving an accurate diagnosis.

Women who experience delays in getting an accurate diagnosis, or whose endometriosis remains undiagnosed, can struggle with loneliness and frustration. These feelings are often compounded by the fear and uncertainty that comes with an increased risk of infertility and certain cancers for women with endometriosis, as well as the huge impact symptoms can have on their lives. For instance, many women with endometriosis can find sex painful, significantly affecting their sexual relationships.

These issues can be further exacerbated by the personal costs associated with endometriosis due to symptom-related hospitalisations, absenteeism from work, and short- and long-term disability. It should come as no surprise, then, that endometriosis has been directly associated with depression, anxiety and an impaired quality of life.

How can a condition with such far-reaching impact get so little attention? It echoes a broader trend of gender imbalance in access to health services; the so-called ‘pain bias’ is well documented and refers to disparities in the treatment of men’s and women’s pain. Compared with men, women wait longer in emergency departments and are less likely to be given effective painkillers.

It is highly probable that the shared histories of medicine and misogyny are, at least in part, responsible for endometriosis remaining overlooked and misunderstood today.

Converting inaction into action

Despite the multitude of challenges, there are many promising avenues for improving endometriosis care. These include new non-invasive techniques for diagnosis (e.g. stool sampling), innovative delivery of medicines using nanomaterials, and treatments targeting imbalances in the gut microbiome caused by endometriosis.

The latest research has also begun to reveal biological links between endometriosis and other chronic conditions. Common genetic factors have been identified in the development of endometriosis and conditions such as gastrointestinal disorders (e.g. irritable bowel syndrome), pain conditions (e.g. migraine) and inflammatory conditions (e.g. asthma, osteoarthritis). It is crucial these links are investigated further to facilitate early symptomatic intervention and aid the development of new treatments.

Decades of inaction and inadequate funding have allowed endometriosis to become a serious and hidden public health crisis, enveloped in stigma and confusion. There is a clear need for organisation, advocacy and patient-centred policy change to ensure the daily lives of millions of women are not dominated by this chronic, progressive condition.

I hope this Endometriosis Awareness Month marks a turning point in accelerating research into the condition’s cause, diagnosis and treatment, and that all emerging evidence is reflected in political decision-making, guideline development and clinical care.

There is a lot to be achieved, and we need to start now.

*As endometriosis falls into the category known as ‘women’s health’, we have used the terms ‘woman’ and ‘women’ throughout this blog. However, we recognise that endometriosis can affect people of all genders and that some therapies used to treat endometriosis symptoms also have an essential role in transgender healthcare.

The opinions expressed in this blog are those of the author and do not necessarily represent the views of The Health Policy Partnership.