NHS failing to address endometriosis mental health crisis, charity warns

Endometriosis South Coast is calling for psychological support to be embedded into standard endometriosis care pathways after research revealed alarming rates of suicidal thoughts among patients.

Endometriosis affects millions worldwide, yet diagnosis still takes an average of 8–10 years. The condition’s chronic pain, diagnostic delays, medical dismissal and uncertainty can have a severe psychological impact, contributing to anxiety, depression and trauma-related symptoms.

A 2020 study by Were, Richardson and Hughes revealed that 60% of women with endometriosis who were surveyed had reported experiencing suicidal thoughts or behaviours.

Dr Jodie Hughes, Founder of Endometriosis South Coast, says:

“Data consistently shows that the psychological burden of endometriosis is profound, persistent, and largely unaddressed in standard care pathways.

“Many elements contribute to people with endometriosis feeling this way; PTSD symptoms linked to traumatic clinical encounters and diagnostic disbelief, disrupted sleep affecting mood, cognition and pain tolerance, career disruption, financial instability, and the grief of lost professional identity.

“Many people tell us they feel abandoned, disbelieved and isolated for years before diagnosis.

“If 60% of people with any other chronic condition reported suicidal ideation or behaviour, it would dominate clinical guidelines, commissioning decisions, and research funding priorities, so why not this?”

The charity is calling on healthcare providers and commissioners to ensure psychological support is integrated into specialist endometriosis services from the point of diagnosis.

Jodie adds: 

“We want pain psychologists to be a standard within specialist services, for trauma-informed consultation to be a baseline competency, and for routine screenings for depression and anxiety to be embedded into care. Not bolted on.”

Find out more about Endometriosis South Coast here.