I went to A&E four times before being diagnosed with endometriosis – I nearly died
Women of colour face an 11-year wait for an endometriosis diagnosis in the UK, leaving many in pain without a pathway to treatment
Ethnic minority women are waiting 11 years on average for an endometriosis diagnosis – 1.5 years longer than the UK average.
Zaynah Ahmed, 20, spent most of her school life in agony not knowing what was wrong, despite once being told by doctors that her life was at risk.
She saw six doctors and visited A&E four times before she was diagnosed with endometriosis and adenomyosis at age 17. Her symptoms started at 11. “My pain didn’t have a name,” said Zaynah.
Women are waiting an average of 9 years and 4 months to get a diagnosis for endometriosis in Britain but new research by the women’s health charities Cysters and Endometriosis UK has found that for women of colour, this wait is even longer – an average of 11 years.
The chronic condition, where cells similar to those which line the womb spread to other parts of the body, including the ovaries, bladder and bowel, can cause inflammation, pain and scarring.
It is thought to affect one in 10 women of reproductive age – around 1.5 million women in the UK – but is notoriously under-diagnosed and leaves some women in agonising pain, often having a significant impact on their education, career, relationships, fertility and quality of life.
Four visits to A&E
Zaynah was first taken to A&E by her mother when she was in year 8 at school – aged 12 or 13 – after a blood test showed her haemoglobin levels were dangerously low, meaning her red blood cells were not able to carry enough oxygen around her body. This can cause severe fatigue, dizziness and shortness of breath.
“The doctor told me, ‘imagine you’d been shot in the leg, and you hadn’t come to receive medical attention. If you hadn’t come seen us this week you would have probably died’,” Zaynah said.
Sujeewa Fernando, a consultant obstetrician and urogynaecologist, explained that endometriosis can lead to low haemoglobin levels “mainly through chronic blood loss”, which can be life-threatening in rare cases if oxygen supply to vital organs is compromised.
“Although this outcome is uncommon, prompt diagnosis, appropriate treatment of heavy menstrual bleeding, and management of underlying conditions such as endometriosis, fibroids, or adenomyosis are essential to prevent women from experiencing serious complications,” he said.
“Endometriosis is progressive, meaning that symptoms can worsen over time, sometimes even leading to women needing to be admitted to hospital as an emergency for procedures like blood and iron transfusions.”
‘Mrs Bibi syndrome’
Zaynah went to five doctors before her school GP finally referred her to a gynaecologist when she was in year 12. It was her mum that fought her corner.
“Without my mum I probably still wouldn’t have been diagnosed,” she said. “Because I was young and because of my ethnicity, I think I would have continued to just be fobbed off.”
Sarah Harris, a lead researcher at Cysters, said the findings showed that South Asian women are often stereotyped as hypochondriacs or having “Mrs Bibi syndrome”.
“Mrs Bibi syndrome” is identified in the NHS’s inequalities reduction framework. It states: “The term stems from the common south Asian surname, and implies that south Asian women, usually older women, tend to exaggerate their symptoms.” Stereotypes like these contribute to delays in care, the researchers said.
Their findings were published in the Disbelieved, Dismissed, Delayed report, based on a survey of 578 people from ethnically diverse communities, and 10 face-to-face in depth interviews.
17 years in pain
Dr Sanchia Alasia, 45, first experienced painful periods at the age of 13. It was 17 years before she was diagnosed with endometriosis at 30.
She said she experienced “subtle but harmful” forms of racialised medical bias as a Black woman during the years in which she was waiting to be diagnosed.
“One was an assumption that I have a higher pain tolerance so that then affects when you say you’re in pain because you’re not believed, or they think your symptoms are exaggerated,” she said. “And I think this deepened the sense of invisibility and contributed to the long delay in my diagnosis.”
In total, Sanchia saw her GP 20 times and was offered different painkillers and contraceptive pills, but told she just had heavy periods.
It was only when she moved to a new GP that she felt she was being listened to. “I had a new doctor, I will never forget her. I actually cried when she left. She was one of those doctors that actually listened. My symptoms were getting worse and she believed me and was concerned so she referred me to the gynaecologist.”
Sanchia was diagnosed with stage 4 endometriosis. Like cancer, the condition is classified by stages. Stage 4 means a patient’s endometriosis is widespread, and includes large ovarian cysts.
In March, Health Secretary Wes Streeting set out a renewed women’s health strategy, with a key focus on reducing waiting times for conditions like endometriosis in England. Wales and Scotland have their own women’s health plans, both of which mention endometriosis waiting times as a priority.