For thousands of women, getting an endometriosis diagnosis takes an average of nine years - which is about eight years and 11 months longer than anyone with severe pelvic pain should have to wait. Now, a pilot study from Oxford University suggests a new CT scan technique might actually spot the condition earlier, which would be a refreshing change from the current system of 'let's try ultrasounds, MRIs, and a shrug.'
The technique uses CT scans combined with a molecular tracer called maraciclatide, which attaches to areas where new blood vessels are forming - thought to be a key part of early endometriosis growth. In the study of 19 women with confirmed or suspected endometriosis, the new method correctly detected the presence or absence of the disease in 16 women and correctly picked up 14 of the 17 cases later confirmed by surgery. Not perfect, but considerably better than 'we think it's just bad periods.'
Endometriosis affects one in 10 women in the UK and causes cells similar to those lining the womb to grow elsewhere in the body. Symptoms range from very heavy periods to extreme tiredness and abdominal pain, often mimicking other conditions - which is why patients frequently end up with a collection of misdiagnoses like irritable bowel syndrome or, as Gabriella Pearson was told, 'part of being a woman.'
Pearson, now 33 and co-founder of the charity Menstrual Health Project, was diagnosed with endometriosis at 23 after more than 10 years of worsening symptoms. She says if she'd been 'listened to and diagnosed earlier she would have been in a very different position now.' The condition has affected her bowel, bladder, and ovary, leaving lasting damage. 'Because of the pain and the complications I wasn't able to progress with my career and go to university,' she says. 'There is a knock-on effect in terms of mental health, finances, work and fertility.'
Currently, the only way to get a definitive diagnosis is through a laparoscopy - a surgical procedure where a small camera is inserted through a cut in the abdomen. This can take years to happen, and as Pearson notes, even non-invasive scans like ultrasounds can be interpreted differently by different doctors. 'We deserve something that is more consistent and reliable for patients and is non-invasive as well,' she says. 'For me, I really struggled with an invasive ultrasound, which was very painful.'
Dr. Tatjana Gibbons, lead researcher on the study, says standard scans mainly detect changes that appear with more advanced disease, meaning many women 'struggle with symptoms, despite being told they have normal imaging results.' The new technique 'offers a highly promising diagnostic and monitoring tool, particularly for superficial peritoneal endometriosis, which is the most common and yet the hardest type to identify.'
Dr. Lucy Whitaker, a gynaecologist and researcher at the University of Edinburgh not involved in the study, notes there is a 'desperate need for new non-invasive imaging techniques.' She calls the findings 'really exciting preliminary data' but cautions that the scans and tracer involve radiation exposure. That risk, she says, needs to be weighed against the risks of a laparoscopy - which, spoiler alert: surgery is generally not a walk in the park either.
The work, published in the Lancet Obstetrics, Gynaecology and Women's Health, was led by the Nuffield department of women's and reproductive health at the University of Oxford and Serac Healthcare. Larger studies are needed to confirm the results, but for the one in 10 women who currently spend roughly a decade being told it's all in their heads, this is at least a glimmer of 'maybe they'll actually look.'