Endometriosis Misdiagnosis Claims: When Years of Delayed Diagnosis Causes Preventable Harm

Endometriosis affects approximately 1.5 million women in the UK. Average diagnostic delay is 8 years. During those years, women are often told their symptoms are normal, their pain is exaggerated, or that they have irritable bowel syndrome. Meanwhile, endometrial tissue spreads, adhesions form, and organs including the bowel, bladder, and fallopian tubes can be permanently damaged. Infertility — affecting 30–50% of women with endometriosis — can develop or worsen during the delay. When a clinician repeatedly fails to consider and investigate endometriosis despite classic symptoms, and harm results from the delay, a clinical negligence claim may be possible.

What is endometriosis?

Endometriosis is a condition in which tissue similar to the lining of the uterus grows outside the uterus — on the ovaries, fallopian tubes, the peritoneum, the bowel, the bladder, and in rare cases elsewhere. It causes an inflammatory response, scar tissue (adhesions), and can distort pelvic anatomy. It is a chronic, progressive condition.

Classic symptoms that should prompt investigation

NICE guidance (NG73 — Endometriosis) lists the following as symptoms that should prompt consideration of endometriosis and referral to a specialist:

• Chronic pelvic pain
• Dysmenorrhoea (painful periods) severe enough to affect daily activities
• Deep dyspareunia (pain during or after sex)
• Cyclical bowel or bladder symptoms — diarrhoea, constipation, blood in stool or urine at menstruation
• Infertility (where endometriosis is known or suspected)
• A pelvic mass on examination

NICE states explicitly: do not exclude endometriosis because symptoms are not present at every menstrual cycle, because examination is normal, or because a previous ultrasound was normal.

The difficulty of proving endometriosis negligence

Endometriosis negligence claims are among the most difficult to bring successfully, because:

• The gold standard for diagnosis is laparoscopy — a clinical investigation, not a simple blood test or scan
• GPs are not expected to diagnose endometriosis definitively, but they are expected to refer women with classic symptoms to a gynaecologist
• A gynaecologist who performs a normal transvaginal ultrasound (which does not reliably exclude endometriosis) and reassures the patient is not automatically negligent

The claim most likely to succeed is one where:

• A woman presented repeatedly with classic endometriosis symptoms
• No gynaecology referral was made despite NICE guidance indicating referral
• The delay led to disease progression causing infertility or requiring more complex surgery than would have been needed with earlier diagnosis

Harm caused by diagnostic delay

• Progression from minimal/mild to severe endometriosis with extensive adhesions
• Infertility — from tubal damage, ovarian endometriomas (chocolate cysts), or adhesions preventing normal fertilisation
• Damage to bowel or bladder requiring surgical resection
• Years of undertreated chronic pain, unnecessary suffering, and impact on quality of life
• Requirement for more complex surgery (bowel resection, ureterolysis) that would not have been needed with earlier diagnosis

SCRIPT 62 — Hospital Falls Claims

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