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March 25, 2022

Urgent need for endometriosis awareness as diagnosis lags behind in the UK

GlobalData epidemiologists expect diagnosed prevalent cases of endometriosis in the UK to increase over the next five years.

By GlobalData Healthcare

Endometriosis affects around 10% of women of reproductive age worldwide. The condition occurs when endometrial tissue grows outside of the uterus. The tissue usually accumulates in the pelvis and causes severe pelvic pain. Other symptoms of endometriosis include fatigue, heavy menstrual bleeding, painful bowel movements, urinary symptoms and infertility.

In 2017, the UK’s National Institute for Health and Care Excellence (NICE) published guidelines for endometriosis diagnosis and management. This was a huge milestone for patients and practitioners who were raising awareness for the disease. As of this month, however, the NICE guidelines have yet to be implemented across the UK and are not currently integrated within the National Health Service’s (NHS) diagnostic pathway for endometriosis. Due to the current lack of clear guidelines, GlobalData epidemiologists expect that the diagnosed prevalent cases of endometriosis will likely increase over the next five years as clearer diagnostic guidelines come into place across the UK.

The limited availability of specialists and public awareness of the disease means that symptoms are often not recognised as indicators of endometriosis, and are instead often attributed to other conditions, meaning endometriosis is largely under-diagnosed. There is currently no cure for endometriosis, but once diagnosed, patients can be advised on how to relieve their symptoms and manage the disease. The UK All-Party Parliamentary Group for Endometriosis reported that receiving an endometriosis diagnosis takes a concerning eight years on average in England. It also stated that 58% of women attended ten or more appointments with a doctor before being diagnosed. The lengthy diagnosis period is said to be due to the normalisation of pain surrounding menstruation, and the highly variable symptom profile among patients with endometriosis. This is compounded by the lack of effective care pathways in the NHS.

In the UK, GlobalData epidemiologists initially forecast around 345,732 diagnosed prevalent cases of endometriosis this year, which will increase to 348,141 diagnosed prevalent cases in 2030. But as the NICE guidelines have yet to be implemented, GlobalData epidemiologists expect that the diagnosed prevalent cases of endometriosis will likely surpass current forecast estimates over the next five years.

Implementation of the NICE guidelines is paramount to increasing awareness and improving the diagnosis of endometriosis in the UK. Streamlining the diagnostic process will reduce the number of unproductive appointments in general practices, hospitals and accident and emergency clinics. It will also prevent the many years of mental and physical suffering that women with endometriosis are currently reporting. March this year is endometriosis awareness month. Raising awareness of endometriosis will encourage healthcare systems and professionals to take patient complaints of related symptoms more seriously, reduce the diagnosis period and expedite the implementation of the NICE guidelines.

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