Resources

Endometriosis and Racism

How the “Strong Black Woman” stereotype hurts endo patients.

Dark skinned woman with torso pain

Warning: CW: Discussions of racism in health care, medical situations and gaslighting; use of gendered language.

Anti-black racism in the medical community — it’s time for change

We are living in unprecedented times. 

The Black Lives Matter movement has grown into one of the largest human rights movements in recent history, and it’s impossible to ignore the impact of systemic racism on the lives of people with endometriosis (“endo”). We spoke with three members of our endo community in Canada* about the devastating toll this can have.

Casandra, 32, is no stranger to the life-altering effects of anti-Black racism in the medical community. Like many with endo she suffered the telltale symptoms from age 12 but never even heard the word endometriosis for almost 15 years. She suffered excruciating pain for years, and believes stereotypes of the Strong Black Woman negatively impact how the medical community hears complaints from Black patients, particularly endo patients.

“It’s almost expected that we have a higher pain tolerance or that we should just ‘get over it’ because we’ve always been perceived as being strong,” she says. “I’ve had to fight so hard against racist doctors and a system that tells me my pain is less important than the pain of white people.”

I’ve had to fight so hard against racist doctors and a system that tells me my pain is less important than the pain of white people.

And she is not alone.

Denise, 40, believes Strong Black Woman stereotypes have significantly impacted her medical treatment. “Sometimes I feel that because I push through my struggles with a lot of positivity and I do my best to present well, my doctor just does not believe me,” she says. “Just because I don’t present my debilitating pain to doctors’ standards doesn’t mean I don’t deserve compassion and understanding. For some reasons, maybe because I’m Black, my doctors just don’t believe that I’m in pain and struggling.” 

Yellow stethoscope surrounded by pills

Increased diagnostic delays

Black endometriosis patients face not only the obstacle of having their pain acknowledged, but also navigating a system that doesn’t understand them. There is a long history of women’s pain being ignored or dismissed in medicine, which contributes to the extreme delays in getting a diagnosis of endometriosis.

It takes an average of seven to nine years in Canada for a patient to receive a diagnosis. If that patient is Black, the odds of receiving a diagnosis are cut nearly in half.

Casandra suffered, silenced, for 18 years before meeting a skilled surgeon who performed laparoscopic excision – a procedure which lasted nearly six hours to remove the lesions that had wrapped around her ureter, fused her bladder to her bowels, and nearly caused her to lose a kidney.

Harriet** was diagnosed with endometriosis in 1990 at age 26 via diagnostic laparoscopy. She lived with ‘mystery’ symptoms for 15 years before receiving a diagnosis and waited another 13 years before the appropriate diagnosis of extrapelvic endo. It was another three years still before she received surgical treatment for the endo that had wrapped itself around her left ureter.

Unfortunately, there is limited quality literature exploring the intersection of race/ethnicity and endometriosis, which can contribute to this egregious delay.

In December 2015 during a routine physical Denise mentioned to her nurse that she’d been experiencing shortness of breath and bleeding from her belly button. Earlier that year she told her family doctor that her periods seemed heavier and perhaps she should see an OB-GYN.

“He told me that wasn’t necessary, as most Black women experience [uterine] fibroids and cysts,” she remembers. “I felt like he was very dismissive when I wanted to understand more about my body.”

It’s not uncommon for Black patients to be told their symptoms are caused by uterine fibroids or cysts – they are three times as likely as white patients to present with fibroids. One study even found that endometriosis can present differently in Black patients, and recommends further study be done to understand these differences.

It turns out Denise had severe thoracic and umbilical endometriosis and has since undergone two major surgeries to address it. Meeting an OB-GYN who truly listened and understood her disease helped Denise avoid endless appointments with physicians who said her pain wasn’t real. But she still experiences racism from general practitioners who have little to no understanding of endometriosis, or Black women’s health.

Woman with her arms crossed in a white shirt and blue jeans sitting on the floor

Racist attitudes towards pain

According to a 2016 study, 40% of white medical students carried false beliefs about biological differences based on skin colour, including:

“Black people’s nerve-endings are less sensitive than White people’s nerve-endings.”

“Black people’s skin has more collagen (i.e., it’s thicker) than White people’s skin.”

“Black people have stronger immune systems than White people.”

These, among other false beliefs about Black health vs. white health, significantly contribute to the implicit racial biases in the health-care system. Black patients are less likely to be prescribed pain medications, so when considering that pain is the number one reported symptom of endometriosis, this means that Black patients are left to suffer.

Currently, Denise uses Naproxen, a non-steroidal anti-inflammatory drug that many people with endo are familiar with. “My doctor always questions me about alternative relief to painkillers,” she says. “I feel uncomfortable as if it’s wrong for me to take it and there seems to be hesitation by my doctor when I want to talk about pain meds. I never had any problems with managing pain medication, but I still have such an uneasy feeling when discussing the need for help managing my pain.”

In the early 1990s when Harriet was navigating chronic pain and a new endo diagnosis she was subject to repeated forced pelvic exams when she went to the ER and zero pain relief despite notes from her GP indicating a need. She underwent several admissions to psychiatric wards, was forced to take medication and subjected to interrogations, and received multiple diagnoses of chronic pain syndrome. Eventually, Harriet met a urologist who took the time to listen to her litany of symptoms and send her for the simple renal function test she’d needed for almost 30 years.

“He was the only specialist who was also a person of colour in all that time and who also cared enough to try and help me instead of stigmatizing me and saying I was ‘somaticizing’ — or my favourite ‘looking for attention,’” she recalls.

Experiences like Denise and Harriet’s are not uncommon for Black patients seeking pain relief or acknowledgment, and unconscious racism has serious effects on mental and physical health.

Woman sitting beside a bed crying

Mental health barriers

Anyone who suffers through the daily gamble of endo understands the deep impact living with this disease has on our mental health. People with endometriosis carry a higher risk for anxiety and depressive symptoms which can seriously affect how we seek treatment.

People with endometriosis carry a higher risk for anxiety and depressive symptoms.

According to the Black Mental Health Alliance, many Black people believe that mild depression or anxiety would be viewed as “crazy” among their social circles, and are hesitant to discuss mental illness even with close family members – let alone medical professionals. Furthermore, a population-based study from 2018 found that police killings significantly impacted the mental health and well-being of Black people. This alone impacts the willingness for the Black community to open up about mental health issues, so when mental and physical health concerns are intertwined, as they so often are, the fear of race discrimination is a powerful motivator to stay silent.

Black woman with white shirt that says

Conversely, when Black patients bring up physical concerns like chronic pain, nausea, dizziness, they are likely to be brushed off as being anxious or depressed, as Casandra was.

“I can count on one hand the number of doctors who have dismissed my symptoms,” she says. “I’ve been told I’m just ’depressed.’ Sure, after a year of not receiving support who wouldn’t be. But that is not the reason for my pain. And I wish I didn’t have to constantly beg my doctors to listen and take me seriously.

One of her lowest points came when she was in hospital post-excision. When clinicians realized she wasn’t ready to be discharged due to pain and inability to go pee, she remained in hospital for five days, an experience she won’t soon forget.

“For the first three days after surgery, I wasn’t given the opportunity to bathe. When I finally made enough noise about it, they brought me a bin with some water and soap and left me there to fend for myself,” she recalls. “I couldn’t lift myself up let alone try to bathe myself, and when I pressed the call button to ask for help, the Asian nurse — because anti-Black racism isn’t limited to white people — came in yelling that I wasn’t her only patient and she was too busy to help me. Later on that same nurse took me out of bed and said my sheets smelled. I still didn’t get the help I needed to bathe myself until my mom arrived at the hospital and helped me. My repeated requests for a social worker patient advocate were ignored, and I felt so defeated and alone as I’d see the same nurse treating the white woman in the bed beside me with kindness and compassion. It makes you feel like you don’t matter, it makes you feel less than human.

Harriet still suffers from dysthymic disorder and PTSD and is completely isolated with no emotional support. “I have been snapped at by medical staff and told, ‘If you’re not happy with your treatment, you should just ask for Medical Aid in dying,’” she recalls. “That is not humane treatment! My surgeon of over six surgeries and 11 years called the police and told them I was suicidal because I had cried over the phone to her receptionist when they wouldn’t give me an appointment to find out the results of a nerve function test. Despite knowing my mental health issues and history of PTSD from medical abuse and neglect, I was removed from my own apartment and forced to spend 16 hours waiting in the ER under guard, even to use the bathroom.”

But the most painful part of all of this experience for her?

“Watching my miracle son deal with anxiety and rage because he has watched his mother being mistreated and discriminated against.”

Creating space for Black experience

All of the women we spoke to believe that in order for the health-care system experience to be better for Black patients, society needs to hear about the ways they are treated. Medical schools and literature must recognize their responsibility to representation: representation of Black people and other ethnic groups in research studies, representation within health-care professions themselves. False beliefs based on skin colour are so ingrained in the practice of medicine they aren’t even recognized, and that kind of thinking has got to end. Black patients need time to develop trust in the medical system.

“It’s difficult sharing my experience [with non-Black people] because once again I’m seen as a ‘strong Black woman’ so my symptoms can’t be that serious because I’m not crying on their shoulders or I don’t look dishevelled or unkempt,” Denise says. “We are allowed to be depressed. We need spaces to be vulnerable, to be listened to, and we want to be heard. I don’t want to dread going to see my family doctor. All physicians need to check their biases — Black people feel pain.

We are allowed to be depressed. We need spaces to be vulnerable, to be listened to, and we want to be heard.

When Harriet became a single mother — since her female gynaecologist advised her to have a baby as a treatment option – she joined a YWCA Single Moms Support Group that was not the safe space she desperately needed.

“I brought in a brochure about endometriosis, and immediately gossip was spread (despite confidentiality agreements) that I was looking for sympathy for an STD,” she says. “I was asked to leave the group because ‘I couldn’t guarantee I wouldn’t miss meetings’ after I missed two weeks post-excision surgery. However, the wealthy white mom who missed five meetings due to her condo flooding remained welcome.” The lifelong scars from being consistently discriminated against run deep and healing feels next to impossible when faced with a system that still exhibits systemic racism.

Casandra says that as traumatic as her experience with racism in health care has been, telling her story is incredibly healing.

“Endometriosis is a lifelong battle. Racism in the health-care system, especially against Black women, is an endless battle. If I can tell my story and help other Black women realize that they don’t have to put up with being treated this way, then my journey is worth something,” she says. “I wouldn’t have been able to tell my story even two years ago, in fear that a doctor would hear what I said and use it to discriminate against me further. Now I’m willing to open my mouth and share my experience in hopes that it saves someone else from the same trauma.

In order for Casandra, Denise, Harriet, and countless other Black endometriosis patients to feel safe being vulnerable there need to be safe spaces for conversations around race and endometriosis.

If you’re in need of support and don’t know where to start, reach out — the more we talk about how race affects the endo experience the more we can support each other and advocate for better treatment.

**Name has been changed.