It currently takes an average of seven and a half years to get an endometriosis diagnosis in the UK, meaning women face years of untreated pain, frustration and uncertainty.
But a new blood test is on the horizon that could change everything.
The world-first test can detect up to 90% of endometriosis cases within a matter of days, a clinical trial suggests, allowing doctors to make earlier decisions on diagnosis and treatment.
Endometriosis is thought to impact 1.5 million women in the UK and often causes debilitating period pain and back pain, pain during sex and reduced fertility.
The test, created by MDNA Life Sciences with support from researchers at the University of Oxford, could be available to women worldwide within months.
Jen Thomas, 32, from Nottingham, spent 14 years asking for endometriosis tests before making any progress. She says the new blood test would have “made all the difference” to her, enabling her to avoid multiple invasive procedures in order to receive a diagnosis.
Thomas began displaying symptoms of endometriosis at the age of 11 and her mum, who also has the condition, took her to the doctors many times.
“We were repeatedly told it was normal for periods to be painful and irregular at a young age – despite the pain being debilitating,” she recalls.
It wasn’t until she was 25 that Thomas was finally referred to a specialist, who agreed to internal ultrasounds and a laparoscopy and hysteroscopy to assess her tissue.
Emma Friddin, 31, from London, had an equally frustrating battle for diagnosis. She was diagnosed with endometriosis aged 23 following 10 years of problems. “My symptoms began when I was 13 years old, I had five operations in the space of four months and almost lost my ovaries,” she recalls.
Had the new blood test been available, Friddin says it would have saved her “10 years of trauma and confusion”.
“It would have saved me sitting in an MRI machine for two hours as an unwell 23-year-old and would have answered a lot of my health problems during my teenage years,” she adds.
The test would have also sped up diagnosis for Christina Sylvester, 24, from Manchester, who realised something wasn’t right with her health aged 16.
“A female doctor consistently excused my symptoms as ‘normal’ for my age,” she says. “At one point I even had to exaggerate my symptoms on one of my ‘ok’ days and felt like a total fraud at the time, but the scan was a sigh of relief and the battle to get the referral was worth it.”
But as Thomas points out, the new test will only be effective if women are able to easily access it.
“I feel there needs to be more education and awareness of the condition,” she says. “I’m not convinced my GPs would have offered the blood test as they kept insisting it was normal. Hopefully things have improved.”