Sports presenter Anita Nneka-Jones remembers having painful periods since she was 14 years old.
A year later, doctors thought she had appendicitis, a common misdiagnosis, and she was hospitalized.
At age 18, doctors gave her pills, but the excruciating pain returned years later.
Doctors kept telling Jones her pain was normal until one day she saw a Facebook post related to endometriosis and all the symptoms.
“I told my GP I wanted to see a gynecologist and they did some tests and they couldn't find anything,” Jones said.
“They suggested doing a laparoscopy, which is how most people are diagnosed.
“When I decided to do it, they discovered endometriosis near my pelvis and abdominal wall, so it was a very validating experience.
“My body had been giving me signs for years that something was wrong, but people who knew more than me told me I was fine, so I believed them. .
“We don't know how biased medical professionals are about what pain is like for certain people, but we do know that Black women are not taken seriously when it comes to childbirth. . That's what motivates me to talk about this.”
Endometriosis is still an under-researched disease, and it remains difficult to understand what role race plays in diagnosis.
These questions were posed to Dr. Shaheen Khazali, a gynecologist and endometriosis expert, who explained that periods remain a taboo topic in Black and Asian communities, and are not well received in these communities. I agreed that it may not have been diagnosed.
“I don't know if this has been properly studied, but these are very logical and reasonable assumptions,” Hazari said.
“In some cultures, you don't even want to talk to your mother about periods. I practiced in Iran for years, and I can say that there is definitely an element of that.
“It also means that only very advanced cases that would otherwise be impossible to carry out daily activities are treated.
“There are almost as many women with endometriosis as there are women with diabetes. This is very common.”
Despite having a laparoscopy, Jones continued to experience complications from painful periods.
“One day at work I started bleeding so heavily that I couldn't touch my fingers,” Jones recalled.
“I was worried that the coil had moved, but the scan showed that it hadn't moved. I went to the doctor and he told me that because so many women have re-surgeries, the egg Since my reserves were depleted, I was advised to see a fertility specialist.
“I got tested and that’s exactly what they said. My priorities have completely changed.
“While some people are saving money for a mortgage, I started thinking about saving money to freeze my eggs.”
According to the British Endometriosis Society, 78% of people who are later diagnosed with endometriosis say they have been told by one or more doctors that they are “making a lot of noise” or make similar statements. It is said that there is. The number of people reporting this experience was up from 69 percent in the 2020 survey.
“If you are suffering from period pain, you should seek advice from someone who knows about endometriosis,” Dr. Hazari explained.
“If pain is affecting you, it's not normal. It's important to listen to your body and find someone you trust.”
