‘I’ve had six barbaric operations for endometriosis – there needs to be a better way to diagnose it’

Endometriosis sufferers who have endured decade-long diagnosis waits have called for another diagnosis option that’s not invasive and “barbaric” surgery.

The condition causes cells similar to those in the lining of the womb to grow in other parts of the body. But despite endometriosis affecting about one in 10 women in the UK, it takes an average of eight years to get a diagnosis.

Laparoscopy, an operation in which a small telescope is inserted into the abdomen to look directly at the tissue, is currently the only reliable way to definitively diagnose and treat endometriosis.

There is no simple test and it does not always show up on ultrasound scans – but researchers in Scotland are hoping to change this with a potentially groundbreaking blood test for faster diagnosis.

Anna Sherrington, 48 and from Ribble Valley in Lancashire, was diagnosed with endometriosis aged 32 after suffering “debilitating” pain in her twenties and numerous misdiagnoses. She said the fact that laparoscopies are the only option for many is “crazy”.

Endometriosis caused her to suffer pain comparable to “ice picks” digging into her lower back, periods so heavy she needed to use two tampons and years of GPs misdiagnosing her symptoms.

She told The Independent: “I spent a lot of school and college misdiagnosed with IBS, glandular fever, pelvic inflammatory disease. At one point, I was known as the girl with a poor immune system. Like thousands of other women, I had to crack on with life regardless, compartmentalising, masking the invisible illness for over a decade.”

Ms Sherrington, who has now had five laparoscopies and one hysterectomy, stressed that more research into women’s health is crucial.

“Unless we pour money into research, this situation is not going to change. Women are currently in a queue, which is ridiculously long, and you’re being medically gaslit for a lot of the time,” she said. “If you have diabetes, you can have a quick blood test. Endometriosis is just as common as diabetes, but can’t be diagnosed without laparoscopic surgery.”

“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.”

One in every 12,000 people undergoing diagnostic laparoscopy dies as a result of complications, according to Endometriosis UK, while one in every 500 will experience a serious complication such as an injury to the bowel or bladder, experts say.

A 29-year-old hairdresser, who wishes to stay anonymous, was diagnosed with endometriosis aged 18 after suffering consistent painful periods since the age of 11.

After 13 operations, including several laparoscopies, she believes women’s health is “majorly underfunded”. She added after every surgery to remove the endometriosis tissue, in her experience, it grew back.

“Every time you have surgery, you end up with scar tissue and adhesions. Then the adhesions also stick things together,” she told The Independent.

But researchers at Robert Gordon University in Aberdeen are working on developing a blood test in hopes it could be used in GP practices to offer a faster diagnosis. They are analysing changes in molecules that cause blood clotting to determine if one of these molecules could be used as a biomarker.

Dr Gael Morrow, who is leading the study, said: “With the long wait times and pressure the NHS is currently facing, it can be extremely frustrating for those waiting to be diagnosed and get an answer, so finding a less invasive test that can be performed quickly is a priority to improve patient care and treatment.”

Dr Lucy Whitaker, senior clinical research fellow and honorary consultant gynaecologist, told The Independent: “Patients themselves, but also researchers, clinicians, everyone involved in endometriosis care, all recognise we need a better way of diagnosing endometriosis.”

She explained superficial peritoneal endometriosis, which affects 80 per cent of patients, can’t reliably be seen on an ultrasound scan, making laparoscopies often the most reliable option. But she explains the surgery is invasive and can mean patients need to take two weeks off work to recover.

Only about 50 per cent of those who undergo a laparoscopy will be diagnosed with endometriosis, meaning a blood test or a saliva test would also help those who do not have the condition.

Dr Whitaker is currently investigating non-hormonal, non-surgical treatments for endometriosis, which is being funded by the charity Wellbeing of Women.

Although blood and saliva diagnostic tests are being researched, Dr Whitaker explained how many studies so far have focused on small groups of people, meaning the test is unreliable in the wider public, different ethnicities and different subtypes of endometriosis.

“We don’t have a reliable blood test, or a reliable saliva test that can be used to diagnose endometriosis in primary care,” Dr Whitaker added.

“I think we’re really conscious that any of these tests coming through need to be really robustly validated to make sure that they work irrespective of the symptoms, irrespective of someone’s ethnicity, or their subtype of disease.”

NHS England has been contacted for comment.