176 million people worldwide have endometriosis. Despite its prevalence, many people don’t know what it is. It's not talked about, it's under-researched, and it's persistently underfunded. For Endometriosis Awareness Month, Bustle UK is hearing from people living with the condition and doctors who specialise in it, and is opening up the conversation to help you get the treatment you deserve.
If you google "people with endometriosis" you'll see pictures of women bent over, hands clutched to their stomachs. Aside from their gender and their postures indicating pain, the thing most of the people pictured have in common is that they're white. If you happen to be a person of colour, getting diagnosed with endometriosis — an illness that already takes on average seven to eight years to diagnose in the UK — can be fraught with added delays. Delays in the diagnosis of endometriosis can lead to complications and affect treatment further down the line.
The reasons people of colour can face added difficulty in getting a definitive diagnosis (which can currently only be done by a form of key-hole surgery called laparoscopy) range from the underestimation of their pain in the medical system to cultural taboos within their own communities.
As per the NHS website, endometriosis is a condition where "tissue similar to the lining of the womb" is found elsewhere in the body. One of the most common symptoms is pain. Studies have shown that it's difficult enough to get the medical system to take the pain of cis women seriously in general, but this issue is only amplified for cis women of colour, and cis black women especially. One study by the University of California found that in U.S. emergency rooms, strong painkillers were prescribed to white patients far more frequently than they were to patients from minority ethnic groups.
Jhumka Gupta, assistant professor of Global and Community Health at George Mason University, explains that more research is needed into the "health inequities in delayed [endometriosis] diagnosis faced by [people] of colour." She says, "decades of public health, medical, and sociology research has documented the existence of racial inequities in health and healthcare. Research [in the U.S.] has documented that black patients are systematically under-treated for pain conditions in comparison to white patients [and] this pattern has been shown in studies with women, men, and children."
Studies show that getting a definitive endometriosis diagnosis is rarely straightforward. It often requires months, if not years, of advocating from the patient's side before doctors take symptoms seriously. A 2016 study by the British government of 2,600 people with endometriosis found that 40 percent had visited the doctor 10 or more times before they were referred to a specialist.
"The health care system may place a double jeopardy on women of colour."
As the cause of endometriosis pain is internal and often does not show up on initial scans, in many cases a referral to a specialist relies on a GP trusting a person's account of their own pain. The overlap between the distrust of female pain and the distrust of pain among those from minority ethnic groups makes reaching a definitive diagnosis all the more complex. Gupta states, "The health care system may place a double jeopardy on women of colour who not only grapple with clinical gender bias, but also implicit racial bias."
And there's another factor at play. Recent research suggests that endometriosis is has been mistakenly characterised as "a white women's disease". Indeed, a recent Twitter poll conducted by gynaecologist Pietro Bortoletto saw 48 percent of its 128 respondents say that they thought people with endometriosis were usually white. This is despite the fact that there is some evidence to suggest race is a risk factor for the condition. In fact, Bortoletto's entire thread on the subject provides a useful look back at how endometriosis has come to be characterised in this way.
The other glaring issue with endometriosis being perceived as a "white women's disease" is its exclusion of trans and non-binary sufferers. "This is an additional burden faced by people with uteruses who aren't cis women," one non-binary sufferer told Clue. As another trans endometriosis sufferer recalled to EndoFound: "When you're sitting in that waiting room, looking like a man, and then someone brings you your clipboard, and you're filling it out, I mean people are staring at you, like, Who is this person? A lot of trans men in general, a lot of them will completely avoid going to the OB-GYN just because it's a female thing, and it gives them a lot of anxiety and a lot of stress.”
There is some evidence to suggest race is a risk factor for the condition.
It follows that the misconception around race could make doctors less likely to consider endometriosis when people of colour present with pelvic pain, heavy periods, or other symptoms. Lala Ireland, founder of social enterprise Feminine Vitae, also argues that the prevalence of uterine fibroids among people of African-Caribbean heritage (a condition whose symptoms are similar to those of endometriosis), could act as a red herring when it comes to diagnosing black and mixed race black people with endometriosis.
People of colour in the UK have reduced power and socio-economic status compared to their white counterparts, and this too arguably contributes to delays in diagnosis. If you don't have the financial ability to turn to private treatment, and if you do not have the same power within society that being white affords, it is that bit harder to get your doctors to listen to your accounts, to receive specialist care, and therefore a definitive diagnosis.
Ireland argues this impact could be particularly acute for first generation immigrants. "There's a distinction in terms of socioeconomic background. If you're talking about a woman from a first generation Afro-Caribbean background, she may have found it much harder to be assertive in front of a doctor as opposed to someone who is several generations down the line."
But delays in diagnosis can start long before a person enters a doctors' surgery or health centre. Due to taboos around menstruation and stereotypes around pain, which can be more pronounced among certain minority ethnic groups, many people of colour suffer painful or heavy periods in silence.
"I wouldn't wish being African and having endometriosis on my worst enemy."
This is something Marian Kwei, a stylist and fashion editor who was born in Gambia, has experienced. She told me, "Where I'm from, women do not talk too much about their pain. I was born in Gambia [and] there is a phrase which means 'swallow it'. So if you're having pain it means put up with it, just contain it without telling anyone.
"That's the situation I dealt with in reference to my endometriosis. It was terrible for me, it was very ostracising. Here is this pain which I can't talk about because I'm supposed to be swallowing it down. I wouldn't wish being African and having endometriosis on my worst enemy," she says.
Dr Anita Mitra, gynaecologist, author, and MoodyMonth.com contributor adds, "Endometriosis is a condition that can cause heavy and excruciatingly painful periods and pain during sex, as well as fertility issues. These are all topics that are known to be associated with stigma in society as a whole, but especially in black, Asian & minority ethnic communities.
"Understanding that these symptoms are a cause for concern is the first step to seeking help, and many [patients], unfortunately, think they are things they just need to 'put up with' because they're not taught about this in schools for example. And because [patients] may feel unable to talk about it their friends and family, it can remain a mystery."
No matter how empowered the patient, they need a doctor who is willing to listen.
Changes have recently been announced which will make lessons on endometriosis and other menstrual health conditions compulsory in English schools. This is a vital first step, but their effectiveness for people of colour depends on them putting forward representative picture of who is affected by endometriosis, as well as taking into account how race and ethnicity may impact a patient's experience of the illness.
And it's not just about empowering those who might have the condition, it's also changing attitudes and misconceptions within society and the medical system that serves it. No matter how empowered the patient, they need a doctor who is willing to listen if their pain, heavy bleeding, fatigue, or all three are to be taken seriously.
Mitra has ideas about how this can be achieved, "[Patients] may feel unable to talk to their doctor about issues of a sexual nature, and may feel they will be accused of being promiscuous or leading an irresponsible sex life which [should never be] the case," she says.
"Sharing a GP with other family members may also be a concern, but [patients] should be assured that their doctor is not allowed to talk to their family, or other members of the community due to strict confidentiality rules."
She concludes, "Medical professionals do not feel shy to talk about these issues, but I think we should always seek to remind ourselves that not everyone feels the same way, and ensure we offer a sympathetic, non-judgmental ear to our patients, and answer their questions sensitively."