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Diagnosing endometriosis takes an average of almost 7 years, study shows

Posted on 22 February 2024

Endometriosis takes an average of 6.6 years to be diagnosed worldwide, with delays of up to 27 years reported in the UK, researchers at the University of York have found.

Addressing diagnostic delay must remain a priority for researchers, health care providers and policy makers, the researchers say.

The disease, thought to affect 10% of women globally, is a condition where tissue similar to the lining of the womb grows in other places outside the womb. It’s painful, exhausting, interferes with daily life and can lead to infertility if untreated.

In a review of 22 existing research papers in the English language focusing specifically on delayed diagnosis for endometriosis, the researchers found that the average time to diagnose the condition was 6.6 years. But the delays varied within the study, from 6 months in a small study from Brazil, right up to a study in the UK showing a 27-year delay.

The research, although not yet published in a journal, has been featured in New Scientist.

Urgent need

Dr Amanda Mason-Jones, Associate Professor in Global Public Health in the Department of Health Sciences at the University of York, said: “The results of our study demonstrate just how widespread delays to the diagnosis of endometriosis are. We also observed that timelines for diagnosis varied significantly between countries, emphasising the potential for action to be taken to reduce delays.  

"Our findings highlight the urgent need for targeted interventions to address these delays, particularly in the UK where some of the longest waiting times were identified.   

Lack of knowledge

While the study didn’t set out to look at the reasons for delays or compare methodologies in different countries, multiple factors for delays were cited in the various research papers. These included: a lack of knowledge among patients and health care professionals; the existing stigma of discussing a gynaecological condition;  a lack of access to good health systems; a lack of an established referral pathway; and normalisation of the painful symptoms by health professionals or friends and family.

A crucial first step in establishing an accurate picture of diagnostic delay, say the researchers, would be better tracking and reporting of patient outcomes through medical records.  

Inadequate

Jodie Fryer, who led the research as part of her Master of Public Health (MPH) degree at the University of York, said: “The majority of studies included within our research relied on women self-reporting symptoms to medical professionals. The problem arising from this is two-fold: firstly, women struggle to verbalise or explain symptoms, and secondly, when they do medical records are often inadequate or unavailable. The lack of availability of records is exacerbated when multiple health professionals are seen in multiple settings.

"Accurate keeping of records could improve tracking of endometriosis symptoms, allow for more accurate representation of the reasons for diagnostic delays, and help to establish guidelines for realistic versus excessive wait times for women.”

She added: “Given the severity of pain and extent of the disease, as well as the increased costs for health systems of a slow diagnosis, addressing diagnostic delay must remain a priority for researchers, health care providers and policy makers.”

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