How societal stigma stops Muslim women from receiving a timely endometriosis diagnosis

“Aunty Rosie is here,” I remember saying to my mum at numerous points during my teenage years.

The thing is, ‘Aunty Rosie’ wasn’t actually a real person – it was a code name for my periods.

Growing up in a South Asian community, with brothers, grandparents, uncles, and male cousins, constantly around us, Muslim women are often told that they shouldn’t openly discuss their periods because it’s ‘shameful.’

"For Muslim women who barely feel comfortable openly discussing their periods with their close family and friends, going to see a doctor for these symptoms and potentially have invasive testing can seem daunting and embarrassing"

The stigma associated with our menstrual cycles and women’s health, in general, is still deeply embedded in society, especially in ethnic minority communities.

As a result, many Muslim women often don’t seek out medical assistance for any abnormal symptoms, including heavy bleeding and painful periods, and end up delaying any potential diagnosis’, or sometimes even going on to spend the rest of their lives suffering in silence.

In particular, this stigma has a significant impact on Muslim women who are unknowingly suffering from endometriosis.

Endometriosis is a chronic condition that causes tissue similar to the tissue found in the lining of your uterus to start growing elsewhere in your body, causing significant pain, potential infertility, and several other symptoms.

Whilst endometriosis is estimated to affect 1 in 10 women and has a prevalence that is just as high as diabetes, the complex nature of the disease – as well as the fact that women’s health issues are often not taken seriously by health professionals – means that endometriosis sufferers tend to wait an average of 7.5 years from the time they first presented with symptoms till they receive an official diagnosis.

Of course, for Muslim women who barely feel comfortable openly discussing their periods with their close family and friends, going to see a doctor for these symptoms and potentially having invasive testing can seem daunting and embarrassing.

Yasmean Ashraf, 36 from Sheffield, was only nine when she first began experiencing her endometriosis symptoms, but 23 by the time she got a diagnosis.

While Yasmean’s mother was vocal about what her daughter was enduring in hopes that someone would be able to offer advice or help, she still felt as if she was being judged by members of the community: “I was seen as the poor ill girl. People would think, who would want to marry her? What if she can’t have children? What kind of life will she have?”

Shabnam, a 36-year-old life coach from Surbiton, was also a teenager when she first began experiencing symptoms of the disease, but in her late 20s by the time she got her diagnosis.

In the time between the onset of her symptoms and her eventual diagnosis, endometriosis was not even mentioned to Shabnam by a medical professional even once.

Her experience with the disease and the stigmatisation of it in her community lead Shabnam to pursue a master’s in psychology at the University of Derby, where as part of her thesis she was able to explore the experiences of South Asian Women in the UK who suffer from endometriosis.

"If somebody were to have endometriosis and disclose that before they got married, there would be a lot of stigma and taboo surrounding it"

“Muslim communities are very pronatalist and there’s a lot of emphasis on marriage and having children right after you get married," she tells The New Arab.

"If somebody were to have endometriosis and disclose that before they got married, there would be a lot of stigma and taboo surrounding it.”

But when Shabnam decided to explore these issues for her thesis, she faced difficulties in recruiting Muslim women to be a part of her study in particular: “I approached some Muslim communities so that they could let their members know and some would just refuse because they said that it was a ‘delicate’ or ‘private’ matter, and they don’t feel comfortable asking their members to participate.”

Although research on endometriosis has somewhat increased in recent years, there still appears to be a lack of interest in exploring the experiences of the disease in Muslim communities.

However, a 2021 study conducted on endometriosis sufferers of Arab descent in the UAE found that Arab women were more likely to receive a confirmed diagnosis of the disease if infertility was their primary symptom, as opposed to pelvic pain.

The study also identified that married women experienced less of a delay as opposed to single women, with married women having an average diagnostic delay of 10.8 years and it being 15.8 years for single women.

While diagnostic delays are common for endometriosis sufferers of all backgrounds, the deeply embedded stigma surrounding women’s health in Muslim communities means that this delay can be further prolonged for these women.

Founder of Cysters, a charity that aims to address issues around reproductive health in ethnic minority communities, Neelam Heera, tells The New Arab about some initiatives the organisation has introduced to encourage Muslim women to take their potential endometriosis symptoms more seriously.

“We’re working on introducing something called ‘Big Cysters’ where we’re aiming to create a community for people who have already gone through the journey and allow them to form friendships with those who are in the process of getting diagnosed and going to appointments," Neelam tells The New Arab.

"There is still a long way to go and centuries of misunderstanding around women’s health for change to be made"

Through the ‘Big Cysters’ initiative, Neelam is hoping that those from minority communities, where these issues have been heavily stigmatised, are able to feel less alone and daunted on their journey.

But even then, there is still a long way to go and centuries of misunderstanding around women’s health for change to be made.

The recognition surrounding endometriosis has somewhat increased in recent years, particularly in the West. But many Muslim women are still under the impression that their abnormal symptoms, such as heavy bleeding and constant pain, are just something they ‘have to deal with’ in silence, reinforcing these stigmas and ensuring that Muslim women continue to suffer, when in fact, we need to speak up for a change to be made.

Sarah Harris is a freelance journalist with an interest in health/racial inequalities, chronic illness and gender disparities within ethnic minority cultures.

Follow her on Twitter: @sarahthejourno