Sports presenter Anita Nneka Jones remembers getting painful periods since she was 14 years old.
A year later she was hospitalised when doctors thought she had appendicitis, a common misdiagnosis.
At 18 the doctors put her on the pill but the excruciating pains still returned a few years later.
Jones was continuously told by doctors that her pain was normal until one day she saw a Facebook post about endometriosis and related to all the symptoms.
“I told the GP I wanted to see a gynaecologist and we did a scan but nothing came up,” Jones said.
“They offered to do a laparoscopy which is how most people are diagnosed.
“I decided to do it and they found endometriosis near my pelvic bone and abdominal wall so it was a very validating experience.
“My body had been giving me signs all these years that something wasn’t right but because I was told by people who were supposed to know more than me that I was fine, I believed them.
“I don’t know to what extent medical professionals have prejudices of what pain looks like in certain people but I’m aware that when it comes to giving birth, Black women are not taken seriously. That’s what pushes me to talk about it.”
Endometriosis is still under-researched and it remains difficult to understand what role race plays with a diagnosis.
These questions were put forward to Dr Shaheen Khazali, a gynaecologist and endometriosis specialist, who agreed that because periods remain a taboo topic in Black and Asian communities, it could mean these communities are under-diagnosed.
“I’m not aware of this being properly studied but these are very logical and reasonable assumptions,” Khazali said.
“In some cultures you don’t even want to talk to your mother about your periods. I practised in Iran for a number of years and I can tell you that there is certainly an element of that.
“It also means only the very advanced cases are dealt with where it would otherwise be impossible to live your life.
“You almost have as many women with endometriosis as you have women with diabetes, that’s how common it is.”
Despite having a laparoscopy, Jones continued to have complications with her period pains.
“I started violently bleeding at work one day and I couldn’t put my finger on it,” Jones remembered.
“I was worried my coil had moved but the scans showed it hadn’t. I spoke to a doctor who suggested I go see a fertility specialist because so many women who have a second surgery their egg reserves are depleted from it.
“I got checked and that’s exactly what they told me. My priorities completely changed.
“While some people were saving up for a mortgage, I started thinking about saving money to freeze my eggs.”
According to Endometriosis UK, 78 per cent of people who later went on to receive a diagnosis of endometriosis had experienced one or more doctors telling them they were making a ‘fuss about nothing’ or similar comments. The number of people reporting this experience has increased from 69 per cent in our 2020 survey.
“If you are suffering from painful periods., you need to seek advice from someone who knows about endometriosis,” explained Khazali.
“If the pain is affecting you, it’s not normal. It’s important to listen to your body and find someone you trust.”
