The urgent need for research and compassionate care in endometriosis

A call for action to prioritize endometriosis as a global health problem has been made

Key Points

Highlight

• Addressing the challenges in endometriosis care and research requires increased investment, interdisciplinary collaboration, and enhanced awareness among healthcare providers and the public.

Importance

• The narrow perception of endometriosis as exclusively a gynecologic disorder underscores the crucial need for broader, multidisciplinary approaches to diagnosis and treatment.
• Endometriosis research is underfunded despite its socioeconomic impact, impeding progress.

What’s done here

• This commentary article by Guidice et al. summarizes the challenges faced in endometriosis care and research.
• The main areas involved in inhibiting timely diagnosis and treatment and the problems regarding funding are discussed.

Key results

• The diagnosis of endometriosis is complicated by its heterogeneous presentation and the normalization and overlap of the symptoms.
• The diagnostic delay is seven years on average, and the lack of a reliable diagnostic non-invasive marker is still an issue.
• Both surgical and hormonal treatment options are suboptimal with high recurrence rates.
• Female-specific conditions, including endometriosis, are consistently underfunded in research.
• The lack of representation in open-access reference databases hampers biomolecular data science.
• Endometriosis patients are in need of personalized, multidisciplinary care provided by trained healthcare professionals.

Lay Summary

Endometriosis, a common yet little-known inflammatory disorder, has significant patient and public health impacts due to underinvestment in its research and care. Delayed diagnosis and inadequate care persist due to reliance on surgical methods and limited advancements in medical therapies. Menstrual stigma, gender biases, and racial disparities further hinder access to quality care globally. Lack of awareness and discomfort surrounding menstrual health among healthcare providers exacerbate these challenges.

Guidice et al. from the US and the UK called for action to prioritize endometriosis as a global health problem and wrote a commentary regarding the challenges in this area.  It was published in the December 2023 issue of the journal Nature Communications .

The authors talk about the heterogeneous presentation of endometriosis which is categorized into superficial peritoneal, ovarian, and deep subtypes, and how it complicates diagnosis and treatment. It is also added that timely identification is hindered by reliance on surgical visualization for superficial lesions and limited access to healthcare services—the diagnostic delay averages 7 years, exacerbated by socioeconomic and racial disparities. Treatment options, including surgery and hormonal therapies, often have suboptimal outcomes, with surgery associated with a 50% recurrence rate. Geographic and financial barriers further limit access to specialized care. What is more, the lack of a prognostically correlated classification impedes the discovery of effective diagnostics and personalized treatments.

The authors suggest that despite its socioeconomic impact comparable to diseases like diabetes and rheumatoid arthritis, endometriosis research faces chronic underfunding. While recent increases in NIH funding are acknowledged, it is emphasized that the allocation remains disproportionately low, impeding scientific advancements. The narrow perception of endometriosis as solely a gynecologic disorder is highlighted, with the authors advocating for broader multidisciplinary approaches. They stress that the lack of representation in reference databases inhibits scientific discovery. It is underscored that improved awareness and education, including menstrual health curricula, are essential.

The authors conclude by saying that the global implementation of specialist care models as well as the critical need for timely diagnosis, personalized, interdisciplinary treatment, and increased research commitment to address the global public health challenges posed by endometriosis are all crucial.

Research Source: https://pubmed.ncbi.nlm.nih.gov/38049392/