Endometriosis: "I feel like I'm screaming into the void"

Healthwatch Essex presents the lived experiences of women in Essex affected by endometriosis, highlighting the significant physical, emotional, and social impacts of the condition. It draws on evidence from a survey completed by 136 women, in‑depth interviews, engagement with local support groups, and testimonies from partners and carers.

The report finds that many women first experienced symptoms at the onset of menstruation, often in childhood or early adolescence, but commonly believed their pain and heavy bleeding were normal due to a lack of education and awareness. As a result, many delayed seeking help or were repeatedly dismissed when they did seek medical advice. Women frequently reported being told their symptoms were “just bad periods,” stress-related, or psychological, leading to feelings of being ignored or gaslit by health professionals.

Diagnosis delays were a central issue, with women often waiting many years for confirmation of endometriosis. The report reinforces national findings that the average diagnosis time in the UK is now over nine years, rising to more than eleven years for women from ethnically diverse backgrounds. Long waiting times for specialist gynaecology appointments in Essex, particularly at Colchester Hospital, further exacerbated delays in diagnosis and treatment.

Physically, respondents described chronic and severe pain, heavy bleeding, fatigue, bowel and bladder issues, and pain during or after sex. Many women reported being bedbound during flare-ups and experiencing symptoms daily rather than only during menstruation. Mentally, the condition had led to anxiety, depression, low self-esteem, and, in some cases, suicidal thoughts. Women commonly described doubting themselves after years of not being believed, which had lasting effects on their trust in healthcare professionals.

Endometriosis was also found to have a substantial impact on education, employment, finances, and relationships. Some women missed significant periods of school or university, while others lost jobs or changed careers due to sickness absence. Although some employers made reasonable adjustments, others initiated absence or capability procedures, causing additional stress. Partners and family members were often required to become informal carers, affecting their own health, employment, and emotional wellbeing.

Support networks varied widely. While many women relied on partners, friends, and family, others felt isolated or unable to access support. Online and face‑to‑face peer support groups were valued, particularly the Rayleigh and Colchester groups, but gaps were identified in west Essex where no in‑person groups exist.

The report concludes that endometriosis is not solely a medical issue but a systemic and societal one. It highlights widespread failures in listening, education, follow‑up care, communication, and access to specialist services. Women reported being discharged after surgery without clear care pathways or ongoing support, leaving them to restart referral processes when symptoms returned.

Key recommendations include improving education about menstrual health in schools for all genders, increasing training for GPs and other health professionals, providing clearer information about referrals and waiting times, and ensuring continuous follow‑up for diagnosed patients. The report also calls for greater employer awareness, better workplace adjustments, expansion of peer support groups, and substantial investment in research into endometriosis treatments and care pathways.

Overall, the report paints a picture of women experiencing prolonged suffering, loss of trust, and major life disruption due to delayed diagnosis and inadequate care, and it calls for urgent action to ensure women with endometriosis are listened to, believed, and properly supported.