A groundbreaking blood test being developed in Scotland could end the agonising wait endured by millions of women for an endometriosis diagnosis, a delay that now averages nearly a decade.
For those living with the chronic condition, the path to diagnosis is often a demoralising marathon of dismissed symptoms and invasive procedures. Anna Sherrington, 48 from Lancashire, described years of being misdiagnosed with conditions like IBS and glandular fever, forced to “crack on with life” while enduring pain she likened to “ice picks” digging into her lower back. Her experience is tragically common. According to Endometriosis UK, the average time to diagnosis has now worsened to nine years and four months, with the wait in Scotland exceeding ten years.
The barriers are systemic. Around one in four women report needing ten or more GP visits before endometriosis is even suspected, a figure that rises to 39% in Scotland. A survey by the charity found 83% of patients were told by a healthcare practitioner they were “making a fuss about nothing”. For ethnically diverse communities, the diagnostic delay stretches to an average of 11 years.
The risks of the only definitive answer
This diagnostic impasse leads to one definitive, yet fraught, solution: laparoscopy. This keyhole surgery, requiring a general anaesthetic, is currently the only reliable way to confirm and treat endometriosis, particularly the superficial peritoneal type which affects 80% of patients and often eludes ultrasound detection.
However, the procedure carries significant limitations and risks that patients say make the diagnostic journey feel “barbaric”. Recovery from a diagnostic laparoscopy typically requires up to 10 days off, with a full return to work potentially taking three weeks. The physical toll is compounded by the fact that only about half of those who undergo the surgery are actually diagnosed with endometriosis, meaning many endure the process for no conclusive result.
The surgery itself is not without danger. While serious complications are rare, they occur in approximately 2 in 1,000 cases, according to detailed analysis. These can include injury to the bowel, bladder, or blood vessels, with the added risk that such damage may not be identified during the operation. For every 12,000 diagnostic laparoscopies performed, Endometriosis UK states one person dies as a result of complications.
“Every time you have surgery, you end up with scar tissue and adhesions. Then the adhesions also stick things together,” said a 29-year-old hairdresser who has undergone 13 operations. Anna Sherrington, who has had five laparoscopies, was blunt: “It’s almost barbaric that you have to undergo surgery. You’ve got a condition, and in order to get diagnosed, you have to undergo major surgery. It’s just crazy.”
The race for a simpler test
It is against this backdrop that researchers are urgently pursuing non-invasive alternatives. Dr Gael Morrow, leading a study at Robert Gordon University in Aberdeen, is analysing changes in blood-clotting molecules to identify a biomarker for a rapid GP blood test. “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,” she said.
This is one of several promising avenues. The charity Wellbeing of Women is funding research into blood clotting mechanisms in endometriosis patients to pave the way for a test. Elsewhere, a blood test developed by MDNA Life Sciences and the University of Oxford, which detects mitochondrial DNA mutations, was shown in a 2019 Biomarkers in Medicine study to identify up to 90% of cases. Another, EndomTest from Kephera Diagnostics, uses a combination of serum biomarkers and patient history.
Beyond blood, other non-invasive methods are emerging. The Ziwig Endotest® is a saliva-based diagnostic using AI analysis of microRNAs. In imaging, Oxford University researchers have explored a new agent, 99mTc-maraciclatide, to help detect superficial disease. A separate UK-launched test, EndoSure, uses Electroviscerography to detect elevated prostaglandin activity linked to endometriosis.
Dr Lucy Whitaker, a senior clinical research fellow and consultant gynaecologist, cautions that many studies so far involve small groups. “We don’t have a reliable blood test, or a reliable saliva test that can be used to diagnose endometriosis in primary care,” she said, stressing any new test must be “robustly validated” across different ethnicities and disease subtypes.
The urgency for better diagnostics is underscored by the condition’s staggering impact. Endometriosis affects 1.5 million in the UK—one in ten women and those assigned female at birth—and costs the economy an estimated £8.2 billion annually in treatment and lost work. Endometriosis UK states one in six women with the condition leave their jobs due to symptoms, while severe period pain and endometriosis-related absenteeism cost a further £11 billion each year.
Charities are now calling for governments to commit to slashing the average diagnosis time to one year or less by 2030. As research continues, from Dr Whitaker’s work on non-hormonal treatments to the EPIC2 trial investigating dichloroacetate for pain, the goal remains to replace a decade of doubt and invasive surgery with swift, simple answers.
