Endometriosis: lived experiences of women in Essex

Published: March 2026
Organisation: Healthwatch Essex
Participants: 136 women with experience of endometriosis

Overview

Healthwatch Essex spoke to women across Essex about their experiences of endometriosis. The project included a survey, interviews, support group discussions and a podcast. The aim was to understand how endometriosis affects people’s lives and their experiences of diagnosis, treatment and support.

What is endometriosis?

Endometriosis is a long-term condition where tissue similar to the lining of the womb grows in other parts of the body. It can cause severe pain, heavy bleeding, tiredness, bowel and bladder problems, and fertility issues.

Key findings

Symptoms often start at a young age

Many women said their symptoms began when they first started their periods, sometimes as young as nine or ten years old. Many believed their pain and heavy bleeding were normal and did not realise they could be signs of a medical condition.

Endometriosis has a major impact on daily life

Women described severe pain, extreme tiredness, heavy bleeding and digestive problems. Many said the condition affected their education, work, relationships, social lives and mental health. Some reported anxiety, depression and feelings of isolation.

Many women do not feel listened to

Only a small number of women said they felt listened to by health professionals. Most said their symptoms had been dismissed or explained away as normal period pain, stress or other conditions. Some described having to repeatedly fight for referrals and investigations.

Diagnosis can take many years

Women reported waiting months or years for diagnosis and specialist care. Some waited more than 10 years and several paid for private treatment because of long NHS waiting times. Many described multiple GP appointments before endometriosis was considered.

Support varies

Many women relied on family, friends and online support groups. Some employers were understanding and offered flexibility, while others were not. Several women said their condition had affected their ability to work or had led them to leave employment altogether.

What women said needs to change

The strongest message from participants was that health professionals need to listen to women and take their symptoms seriously.

Women also called for:

• Better awareness and understanding of endometriosis among healthcare professionals.
• Faster diagnosis and shorter waiting times.
• More specialist services and support closer to home.
• Better pain management and mental health support.
• More education in schools about periods and endometriosis.
• Greater understanding and flexibility from employers.
• Ongoing support after diagnosis rather than discharge from services.

Implications for NHS Essex

The findings highlight the need to improve awareness of endometriosis, support earlier identification and diagnosis, and ensure women feel heard when seeking help. The report also suggests opportunities to strengthen education, workplace support, specialist care pathways and access to holistic support services, including mental health and pain management.

Key insight

Women with endometriosis frequently experience long delays in diagnosis, feel their symptoms are not taken seriously, and report a significant impact on their physical health, mental wellbeing, education, employment and relationships. Improving awareness, listening to women’s experiences and reducing delays in accessing specialist care are key priorities.