That’s what endometriosis campaigner Aubrion Rogers wrote on Instagram last year after her endometriosis had gone dismissed and untreated by the doctors she had approached and asked for help.
Rogers, 30, finally convinced doctors in January that her condition was serious and they agreed to operate. She had been suffering with endometriosis at least since her diagnosis in 2020 – and given what we know about extreme diagnosis delays for the condition, probably much longer.
On 22nd January 2022 Rogers died in surgery from complications that arose when doctors were trying to remove her endometriosis. According to a Facebook post written by her husband, she was rushed into surgery after her right ovary burst. During surgery, doctors attempted to remove the ovary as well as her right fallopian tube, her appendix, endometriomas and endometriosis. She suffered a cardiac arrest and passed away while attempting to recover from the procedure.
These deaths have got to make some sort of impact – we need the medical system to act.
Dearbhail Ormond, endometriosis activist
How can a woman beg for medical help and be turned away, with fatal consequences?
Endometriosis is a whole-of-body disease in which tissue similar to that which usually lines the uterus grows in other areas of the body and causes pain, nerve damage and organ damage, among many other symptoms. It is often described as a chronic and non-life-threatening disease. But as Rogers’ story shows, endometriosis can certainly have fatal consequences if left untreated.
The disease itself isn’t technically fatal, explains Dr Mathew Leonardi, an advanced gynaecological surgeon and sonologist at McMaster University Medical Centre, but death can occur as a result of surgery complications or ovarian cancer – which new research shows endometriosis sufferers are at a higher risk of developing than the rest of the population.
"The more complex or advanced endometriosis becomes, the riskier the surgery becomes," Leonardi explained.
Dearbhail Ormond, an endometriosis activist and the founder of digital health app Frendo, told Refinery29 that the delay in Aubrion’s surgery contributed to the risk.
"The delay in Aubrion’s treatment left her in a position where she needed emergency surgery that ended up being fatal," Ormond said. "Had she been operated on two years prior and been investigated properly then perhaps she would still be with us today, and would be getting the help that she needed."
"Very few people understand that when an endometriosis diagnosis is delayed, the actual progression of the disease worsens," Ormond said.
That means that the disease is more likely to become more severe, more quickly, and lead to complications such as nerve and organ damage. Adhesions – or scarring – which occur in between organs in severe disease also make surgery much more complicated.
And yet it still takes up to an average of eight years for a person to be diagnosed with endometriosis in the UK, according to the latest figures from Endometriosis UK.
"Across the world, we still see a shocking diagnostic delay," said Olga Bougie, an assistant professor specialising in minimally invasive gynaecologic surgery at Queen’s University in Canada. "From the moment when endometriosis should have been considered to the time it is actually diagnosed, the wait is approximately seven to 10 years on average."
Ormond explained that while fatal surgical complications are rare, the rest of Aubrion’s story is remarkably common.
"Her journey is not unique," she said. "Both Aubrion and her partner pleaded with doctors for help and were continually ignored or dismissed – and that’s when the disease can become dangerous or fatal."
Lack of awareness about the severity of the disease, as well as historical biases surrounding women in pain (aka the gender health gap) mean that endometriosis sufferers continue to report being unable to get adequate medical care. A January 2021 study found that 90% of endometriosis patients have experienced being dismissed or disbelieved, and 42% of patients have been told by medical professionals that their symptoms are normal.
Both Aubrion and her partner pleaded with doctors for help and were continually ignored or dismissed – and that's when the disease can become dangerous or fatal.
Dearbhail Ormond, ENDOMETRIOSIS ACTIVIST
The progression of the disease itself is not the only way that endometriosis can become life-threatening during the years it is left untreated.
Within days of Roger’s death, Laura Newell died in an Irish hospital as a result of using over-the-counter opioids to treat pain caused by her undiagnosed endometriosis. Newell’s use of pain-relieving medicines containing codeine over a period of time damaged her bowel. The bowel damage required surgery and Newell died from surgical complications in late January 2022.
"These are not isolated incidents," Ormond said.
The medical bias which Aubrion Rogers was subjected to due to her status as an endometriosis patient was compounded by her race. As a Black woman, Rogers was even more likely than Caucasian women to be dismissed or ignored by doctors.
"Historically, endometriosis was seen as the well-to-do career woman’s disease and one that only affected women who delayed childbirth," Bougie explained. "This led to the belief that Black women were 'immune' to it."
It’s proven incredibly difficult to break down that medical bias, she explained. On top of this endometriosis-specific racial bias, studies have demonstrated that the medical establishment is prone to believing that Black patients are less sensitive to pain than white patients, often leaving them without proper treatment.
These biases also mean that Black women are more likely to have their endometriosis misdiagnosed as other, less serious gynaecological conditions. As far back as 1976 it was discovered that 40% of African American women who were told they had pelvic inflammatory disorder actually had endometriosis. A more recent study, published in 2019, found that Black women are half as likely as white women to be diagnosed with endometriosis.
Bougie also said that a lack of understanding of endometriosis has also led to a lack of appreciation that the condition can present differently in people with different ethnicities.
"Our studies have found that non-Caucasian women may have more severe disease but present with fewer symptoms," she said.
This means that non-Caucasian women may have the kind of severe disease that puts them at risk of organ damage or surgical complications but may experience fewer symptoms than other patients.
"It may be that patients are presenting with less symptoms but should be investigated for deep disease which is when it could be life-threatening or could damage other organs," she said. "It’s crucial that doctors are aware of this so that they can properly investigate and diagnose endometriosis even when the symptoms are being reported as less severe."
Ormond said the medical establishment still has a long way to go when it comes to breaking down stigma around endometriosis and making sure sufferers get adequate care. The status quo has to change, and fast, she says.
"These deaths have got to make some sort of impact – we need the medical system to act."