For the hundreds of thousands of women living with endometriosis in the UK, the path to a diagnosis has become a gruelling marathon of misdirection and medical dismissal. New data from Endometriosis UK reveals the average wait to put a name to the debilitating pain has now stretched to nine years and four months, a figure that extends to 11 years for women from ethnically diverse communities.
The story of Anna Sherrington, 48 from Lancashire, is a stark illustration of this national failure. After suffering “debilitating” pain in her twenties, she was misdiagnosed with conditions from IBS to glandular fever, remembered in her youth as “the girl with a poor immune system.” She was finally diagnosed at 32, after more than a decade of symptoms she was forced to “compartmentalise and mask.”
Her experience is far from unique. Surveys indicate 39% of women visit their GP 10 or more times before a diagnosis is even suspected, while 55% end up in A&E with their symptoms, often to be sent home without treatment. Many report feeling “gaslit,” their pain dismissed as psychological, exaggerated, or simply “normal” period pain, eroding trust in the healthcare system.
The impact is profound. The condition, which affects one in 10 women and those assigned female at birth—around 1.5 million people in the UK—inflicts damage on education, careers, relationships, and fertility. Sufferers can lose up to 11 hours of work weekly, with one in six reportedly leaving the workplace entirely. It costs the UK economy an estimated £8.2 billion to £12.5 billion annually in treatment and lost productivity.
The ‘barbaric’ surgical gatekeeper
The central bottleneck and source of profound frustration for patients is the current diagnostic gold standard: laparoscopy. This keyhole surgery, which involves inserting a telescope into the abdomen to look for lesions, is the only definitive way to confirm endometriosis, particularly the superficial peritoneal type which affects 80% of patients and rarely shows on ultrasound.
Patients and clinicians alike describe the necessity of surgery for diagnosis as “crazy” and “almost barbaric.” “You’ve got a condition, and in order to get diagnosed, you have to undergo major surgery,” Ms Sherrington said, who has now endured five laparoscopies and a hysterectomy. The risks are significant. According to Endometriosis UK, one in every 12,000 people dies from complications of a diagnostic laparoscopy, while one in 500 suffers a serious injury to organs like the bowel or bladder. In a small number of cases, the procedure must be converted to risky open surgery.
Even when successful, surgery is not a cure. Recurrence rates are high, with 51% of patients requiring re-operation within a decade. One 29-year-old hairdresser, who has undergone 13 operations, explained that each procedure creates scar tissue and adhesions that “stick things together,” while the endometriosis tissue often grows back. Studies suggest over 60% of women have further surgery, sometimes within two years.
The toll on the NHS is also immense. With gynaecology waiting lists in England exceeding 580,000, long delays mean disease progression, potential permanent organ damage, and increased strain as patients cycle through GP surgeries and emergency departments seeking relief.
The urgent search for a simpler answer
Faced with this crisis, the research community is racing to develop a non-invasive diagnostic test. The most promising avenue is a blood test, with several UK and international teams reporting breakthroughs.
Dr Gael Morrow at Robert Gordon University in Aberdeen is leading a three-year project, funded by the charity Wellbeing of Women, analysing changes in blood-clotting molecules to identify a reliable biomarker. “With the long wait times and pressure the NHS is currently facing… finding a less invasive test that can be performed quickly is a priority to improve patient care,” Dr Morrow said.
Other research strands are advancing rapidly. Scientists in Spain and France have used stem cells from menstrual blood to detect endometriosis with over 80% accuracy. Elsewhere, researchers have identified novel biomarkers in blood, including microRNAs, that could allow for early detection in adolescents. One new approach integrates molecular biomarkers with machine learning to create a highly accurate blood test that works across the menstrual cycle, while a proof-of-concept device can detect a key protein in menstrual blood with high sensitivity.
However, as Dr Lucy Whitaker, a senior clinical research fellow and honorary consultant gynaecologist, cautions, the journey from the lab to the GP surgery is fraught. “We don’t have a reliable blood test, or a reliable saliva test that can be used to diagnose endometriosis in primary care,” she stated. Many existing studies have been on small groups, and any test must be “robustly validated” to work across all ethnicities, symptom profiles, and disease subtypes—a significant hurdle yet to be cleared.
This pressing need for validation underscores the broader context of chronic underfunding. Charities point out that research investment for endometriosis lags far behind other conditions with similar prevalence and societal cost, such as diabetes. Endometriosis UK is calling for governments to treat it as the common chronic condition it is and commit to slashing diagnosis times to one year or less by 2030.
For now, women like Anna Sherrington continue to wait in a “ridiculously long queue,” hoping for a future where a condition as common as diabetes can be identified without what they see as a barbaric surgical rite of passage.