Understanding endometriosis underfunding and its detrimental impact on awareness and research

Abstract

Endometriosis, a chronic disease defined by the presence of endometrium-like tissue outside the uterus, affects approximately 190 million women* globally 1 . It is associated with a range of often debilitating symptoms, including severe pelvic pain, bowel and bladder symptoms, fatigue, and risk of infertility 2 , 3 . Despite its high prevalence, diagnosis is delayed on average by 7–9 years, and this has remained consistent over the past ten years, with effective therapy and care frequently falling short 4 . Research conducted by the Finding Endometriosis using Machine Learning (FEMaLe) Project has shed light on the significant underdiagnosis of endometriosis. In Denmark, only up to 2% of women in the reproductive age receive a diagnosis 5 , compared to an estimated 10%, despite that individuals with endometriosis use the Danish healthcare system 19% more often than those without the condition, in the ten years preceding the diagnosis 6 . The consequences of this diagnostic delay are numerous. First, without adequate treatment, the disease may progress, becoming increasingly difficult to manage. Existing symptoms, such as pain, may become chronic, and new symptoms may develop over time 2 , 3 , 4 . Second, the psychosocial impact of this ‘medical merry-go-round’, as some patients describe it, can significantly reduce the quality of life for those with endometriosis. This includes poor mental health, as well as challenges in interpersonal relationships and occupational settings 7 , 8 . Many people with endometriosis face complex journeys to and through care 9 , which exist within a broader context of historically under-funded research into women’s health and chronic pain 10 . A recent study documented the significant underinvestment in endometriosis research projects across the European Union’s framework programmes, where a staggering low 27 out of 145,983 projects funded in total (0.02%) were found to be related to endometriosis 11 . This lack of financial support perpetuates a cycle of knowledge gaps and limited awareness, contributing to delayed diagnosis and inadequate treatment options for those affected. In this article, we will explore the multifaceted ramifications of underfunding in endometriosis research, comparing it to diseases with similar prevalence and impact, namely diabetes and inflammatory bowel disease 12 , 13 . We will discuss its detrimental effects on awareness and scientific advancements, highlighting the urgent need for increased investment in innovative tools and methods to propel research and innovation forward.

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