Endometriosis Diagnosis Delays: UK Women Wait Nearly Nine Years, Study Finds

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Women in the UK are facing alarming delays in receiving an endometriosis diagnosis, a recent study by Endometriosis UK has revealed. The research, which surveyed over 4,000 individuals diagnosed with the condition, found that women are waiting nearly nine years on average before receiving a diagnosis. This represents a significant deterioration in waiting times compared to three years ago, with an increase of 10 months since 2020.

The report highlights that 47% of respondents had visited their GP on 10 or more occasions with symptoms before being diagnosed, while 70% had visited five times or more.

Emma Cox, the chief executive of Endometriosis UK, condemned the prolonged diagnosis times as unacceptable, stressing the urgent need for decision-makers to recognize and address the significant impact of endometriosis on both physical and mental health.

Endometriosis is a condition characterized by the growth of tissue similar to the womb lining outside the uterus, which can lead to symptoms such as painful periods, painful bowel movements, and pain during or after sex.

It is estimated to affect about one in 10 women of childbearing age. While treatments, including hormone medication and surgery, are available, delays in diagnosis have been a persistent issue.

Importance of Early Endometriosis Diagnosis

The study’s findings underscore the importance of early diagnosis, as the disease may progress, resulting in more severe physical symptoms, organ damage, and potential impacts on fertility. However, only 10% of respondents reported that GPs had mentioned a suspicion of endometriosis during their first or second appointment discussing symptoms.

Furthermore, the report includes distressing accounts from patients who were often dismissed or belittled by medical professionals, with their symptoms being attributed to stress or normal menstrual pain.

One individual recounted enduring over a decade of dismissal and desperation for help, while another was told she was “being dramatic” when seeking assistance for painful periods as a teenager.

In response to the report, Maria Caulfield, the minister for the women’s health strategy, acknowledged the need for improvement in women’s healthcare experiences, particularly for those suffering from endometriosis.

Caulfield emphasized the government’s commitment to addressing this issue through initiatives such as the women’s health strategy and the establishment of women’s health hubs across the country.

However, diagnosing endometriosis remains a challenge, as it can only be definitively identified through a laparoscopy, and symptoms vary between individuals, often overlapping with other conditions.

Endometriosis UK is urging governments to set a target of achieving an average diagnosis time of a year or less by 2030 and calling for urgent reductions in gynaecology waiting times.

The Royal College of Obstetricians and Gynaecologists has echoed the call for action, emphasizing the need for education and national campaigns to empower women to recognize their symptoms and seek help, as well as for healthcare professionals to have the necessary skills and expertise to diagnose and treat gynecological conditions.

Overall, the study’s findings highlight the pressing need for improved awareness, education, and healthcare services to address the challenges faced by women with endometriosis in the UK. It underscores the importance of timely diagnosis and access to appropriate care to alleviate the physical and emotional burden experienced by those living with this debilitating condition.


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