Endometriosis: reducing diagnosis times

March used to be known as Endometriosis Awareness Month but charities now more appropriately refer to it as Endometriosis Action Month. While awareness remains important for those unfamiliar with the condition, for the 1 in 10 people assigned female at birth – from puberty to menopause, over 1.5 million in the UK – who live with endometriosis, awareness is no longer enough. Meaningful change is urgently needed.

The wait

According to the Endometriosis UK 2025 report, the current wait time from first symptoms to diagnosis is 8 years and 10 months. For those from communities of colour, the delay is even more concerning: an average of 11 years – 1 year and 8 months longer than the overall average. This disparity persists despite individuals in these communities waiting less time before seeing a GP about their symptoms and waiting less time for referral to a gynaecologist.

These timeframes have increased, not decreased, over the last six years, despite greater focus on endometriosis in parliamentary debates, largely driven by persistent campaigns from Endometriosis UK and others.

Diagnosis

At present, the only definitive way to diagnose endometriosis is through surgery, which carries inherent risks. However, in recent years there have been developments allowing ultrasound and MRI scans to assist in identifying endometriosis and guiding surgical planning. Promising medical research also suggests that future diagnosis may eventually be possible through blood tests.

Gynaecological conditions remain under‑researched, and symptoms of endometriosis often mimic other conditions such as irritable bowel syndrome, which are frequently investigated first. It is sadly very common for those suffering to report numerous healthcare visits before endometriosis is even considered, let alone diagnosed.

Although endometriosis has no cure, early diagnosis enables access to treatment, which can help prevent progression and reduce the day‑to‑day impact of symptoms. Severe symptoms can affect every aspect of a person’s life – relationships, hobbies, work – and in the workplace, a diagnosis is often key to facilitating reasonable adjustments that enable individuals to continue performing their roles despite debilitating symptoms.

Obtaining a diagnosis does not only unlock treatment; it also validates those who have repeatedly been dismissed as ‘making a fuss about nothing’ or told they ‘just have heavy periods’.

NICE guidelines: treatment and surgery

The National Institute for Health and Care Excellence (NICE) provides guidance to improve healthcare. Guideline NG73: Endometriosis: diagnosis and management was originally published in 2017 and most recently updated in November 2024.

In 2018, NICE also issued quality standards to support implementation and monitoring of the guidelines. These include three key quality statements:

• women presenting with suspected endometriosis should have an abdominal and, if appropriate, a pelvic examination;
• women should be referred to a gynaecological service if initial hormone treatment for endometriosis is ineffective, not tolerated, or contraindicated;
• women with suspected or confirmed deep endometriosis involving the bowel, bladder, or ureter should be referred to a specialist endometriosis service.

The NICE guidelines describe when referral to a gynaecological service should occur (for example, when symptoms have a detrimental impact on daily activities) and when referral to a specialist endometriosis service is required (for deep endometriosis or disease outside the pelvic cavity). They also require a detailed description of the appearance and location of endometriosis when it is diagnosed (1.6.2).

Section 1.5.4 clearly states that healthcare professionals must not exclude the possibility of endometriosis if abdominal or pelvic examinations and ultrasound scans are normal, and must recognise that referral may still be necessary despite normal imaging. Section 1.5.11 further advises clinicians to consider laparoscopy to diagnose endometriosis even when ultrasound or MRI are normal.

Regarding surgery, NICE advises that it should be performed laparoscopically unless there are contraindications, and instructs clinicians to consider excision rather than ablation when treating endometriomas, taking into account fertility preferences and ovarian reserve. Excision involves cutting out areas of endometriosis, whereas ablation destroys the tissue using heat, lasers, or electrical energy. Robotic‑assisted surgery is also becoming more common, offering surgeons enhanced visual fields and potentially greater precision.

Importantly, the guidance emphasises that endometriosis should be treated based on the patient’s symptoms, preferences, and priorities, rather than the stage of disease (1.6.1).

While failing to follow NICE guidance does not automatically meet the threshold for breach of duty in a medical negligence claim, the guidelines act as important benchmarks of care. Departing from them without a defensible reason may have legal consequences.

If you believe there have been issues in diagnosing or treating your endometriosis, our specialist gynaecological team would be happy to discuss your experience and explore whether it may be appropriate to begin a medical negligence investigation.