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

Endometriosis patients who have endured a decade-long wait for diagnosis have called for another diagnostic option that is not invasive and “barbaric” surgery.

This condition causes cells similar to those on the lining of the uterus to grow in other parts of the body. However, despite endometriosis affecting one in 10 women in the UK, it takes an average of eight years to be diagnosed.

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 hope to change this with a potentially groundbreaking blood test for faster diagnosis.

Anna Sherrington, 48, from Ribble Valley in Lancashire, was diagnosed with endometriosis at the age of 32, after suffering “debilitating” pain in her twenties and numerous misdiagnoses. He said it was “crazy” that laparoscopy was the only option for most people.

Endometriosis has left her with pain similar to being stuck with an “ice pick” in her lower back, so severe she has had to use two tampons, and for years GPs have misdiagnosed her symptoms.

he said Independent: “I spent most of my school and university life misdiagnosed as IBS, glandular fever, pelvic inflammatory disease, etc. At one point, I was also known as a girl with a compromised immune system. Like thousands of other women, I had to go through life compartmentalizing and masking this invisible disease for over a decade.”

Ms Sherrington, who has now undergone five laparoscopies and a hysterectomy, stressed that more research into women’s health was vital.

“This isn’t going to change unless we pour money into research. Women are in the queue right now, which is ridiculously long, and a lot of times you’re being medically gaslit,” she said. “If you have diabetes, you can get a quick blood test. Endometriosis is as common as diabetes but cannot be diagnosed without laparoscopic surgery.”

“It’s almost barbaric that you have to have surgery. You have a condition and you have to have major surgery to get diagnosed. It’s crazy.”

According to Endometriosis UK, one in every 12,000 people who undergo diagnostic laparoscopy dies from complications, while experts say one in every 500 people will experience a serious complication such as bowel or bladder injury.

The 29-year-old hairdresser, who wanted to remain anonymous, was diagnosed with endometriosis at the age of 18 after having constantly painful menstrual periods since the age of 11.

After 13 surgeries, including several laparoscopies, she believes women’s health is “grossly under-resourced.” She added that after each surgery to remove endometriosis tissue, in her experience, the tissue grows back.

“Every time you have surgery, you encounter scar tissue and adhesions. Then the adhesions stick things together,” he said. Independent.

But researchers at Robert Gordon University in Aberdeen are working to develop a blood test in the hope it could be used in GP surgeries to provide faster diagnosis. They are analyzing changes in molecules that cause blood clotting to determine whether one of these molecules could be used as a biomarker.

Dr Gael Morrow, who led the study, said: “Given the long waiting times and pressure the NHS is currently facing, it can be extremely frustrating for those waiting to be diagnosed and receive answers, so finding a less invasive test that can be carried out quickly is a priority to improve patient care and treatment.”

Senior clinical research fellow and honorary consultant gynecologist Dr. Lucy Whitaker said: Independent: “Patients themselves, as well as researchers, clinicians, and anyone involved in endometriosis care, know that we need a better way to diagnose endometriosis.”

He explained that superficial peritoneal endometriosis, which affects 80 percent of patients, cannot be reliably seen on an ultrasound scan, making laparoscopies often the most reliable option. But he explains that the surgery is invasive and may mean patients need to take two weeks off work to recover.

Only 50 percent of those who undergo laparoscopy will be diagnosed with endometriosis, which means a blood test or saliva test can also help those who do not have the condition.

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

Although blood and saliva diagnostic tests are being investigated, Dr Whitaker explained how many studies so far have focused on small groups of people, meaning the test is unreliable for the wider population, 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 conscious that any of these tests need to be validated really robustly to make sure they work regardless of symptoms, regardless of someone’s ethnicity or subtype of the disease.”

NHS England has been contacted for comment.