In this article, we learn about the gynecological healthcare experiences of Black women in the United Kingdom. We also speak with Dr. Christine Ekechi, who is a co-chair of the Race Equality Taskforce that the Royal College of Obstetricians and Gynaecologists (RCOG) recently formed to tackle racial bias and disparities in women’s healthcare.
“I can’t breathe” were the words that George Floyd repeated more than 20 times while a white Minneapolis police officer unjustly murdered him.
The resonance of these words not only triggered a global outcry against violence inflicted on Black communities; it also propagated recollections of similar experiences of oppression within Black communities.
In a similar vein, this article shares the experiences of six Black women and their ongoing battle with painful reproductive conditions.
They all reveal a similar story: that Black women’s “cries” for help are routinely unheard, unseen, and misunderstood. As a result of this, these women are disproportionately suffering in healthcare.
This is a reminder that Black Lives Matter (BLM) is an expansive and inclusive movement that brings all Black lives to the forefront of the ongoing fight against systemic racism.
In contrast, the “All Lives Matter” counterprotest is supposedly intended to establish solidarity and common ground in support of the BLM movement. However, it parallels the “colorblind” ideology, according to which “we all bleed the same color.”
In a healthcare context, the latter violates the concept of triage in medical ethics, which demands that life endangering issues be dealt with first.
These stories are also a reminder of the fact that Black women do not have medical conditions simply because they are Black. So, using “Blackness” as a proxy may never help us understand how their experiences inform the disparities in their healthcare outcomes.
It is the harsh reality that exposes the vulnerability of Black people in U.K. healthcare systems, where implicit bias permeates the healthcare workforce and, in some cases, puts “Black lives at risk” in comparison with other ethnicity groups.
This is apparent in the 2019 MBRRACE-UK report, which confirms that Black women are five times more likely than white women to die as a result of complications in their pregnancy.
Reproductive health research also reports that Black women have a higher risk of miscarriage with both spontaneous and in vitro fertilization (IVF) pregnancy. For full-term pregnancies, stillbirth is also twice as likely to occur in Black women compared with white women.
Reproductive conditions such as fibroids are three times more likely to occur in Black women than white women. Similarly, endometriosis is traditionally associated with being a “white woman’s disease,” which may consequently lead to misdiagnosis and delays in appropriate treatment for Black women.
Dr. Christine Ekechi — who is also a consultant obstetrician and gynecologist at Imperial Healthcare in London, U.K. — recently announced that a multi-focused approach and collaborative effort between doctors and the government, implemented by the newly established Race Equality Taskforce, “[will] ensure that no woman or her family suffers unnecessarily, and that [it should hopefully] address racial inequality, where it exists.”
Medical News Today reached out to six Black women from the U.K. All the women keenly responded to our request for them to talk about the difficulties they had experienced in getting a diagnosis and treatment for reproductive and gynecological conditions such as endometriosis and fibroids.
What was pertinent in the conversations was their appreciation that “someone cared” and was “holding a safe space” to listen to their concerns and, at last, take them seriously.
The case studies
In the sections below, we summarize their unique yet broadly similar experiences by including key quotes from each case study. The quotes reflect the women’s collective experiences, and, more importantly, they are thematically consistent with the reported drivers that may contribute to implicit bias and racism in healthcare.
Most significantly, Dr. Ekechi endorsed MNT’s decision to include personal case studies for this article. Her interview responses reveal that she places particular emphasis on “listening to the experiences of individual women and clinicians” as a way to best improve the Race Equality Taskforce’s understanding of the causes of the inequalities in Black women’s healthcare.
Self-advocacy
Self-advocacy in healthcare refers to a person’s ability to ask for what they need and want and to tell doctors about their thoughts and feelings.
MNT first spoke with 32-year-old Latoya, who talked about dealing with 20-plus years of pain and being “fobbed off” with prescriptions for birth control pills and mefenamic acid, a type of nonsteroidal anti-inflammatory drug, for pain management.
After requesting a female doctor multiple times, Latoya explained that “it took me having to cry helplessly in front of my GP [general practitioner] to be taken seriously, which finally led to my referral to a specialist.”
After a series of investigations, a healthcare professional discovered numerous fibroids in her uterus. They removed them in two separate laparoscopic surgeries — one of which removed two tennis ball-sized fibroids.
Latoya continues to manage her flare-ups by eating a healthful, balanced diet at the recommendation of a female doctor, who said to her [paraphrased]: “I’m not supposed to tell you this, but eat more fruit[s] and vegetables. Although I’m meant to prescribe medication, following a health[ful] diet will limit the growth of your fibroids.”
Latoya’s tenacity to learn about fibroids led her to start her own online platform called Wombbae, which she uses to continue advocating for other women with fibroids.
We also spoke with Paige, 24, who experienced such unbearable pain at times that she had no choice but to defer her university studies due to multiple hospital admissions. Each time she left, a healthcare provider prescribed a stronger combination of pain relievers.
Paige’s reliance on pain relief medication started to affect her mental health. So, after researching alternative ways to manage her pain, she found that her symptoms were consistent with endometriosis and pushed to be referred for an MRI scan.
The MRI scan confirmed the presence of fibroids. After a healthcare provider offered Paige birth control pills to manage the pain — which, like Latoya, she refused — a female doctor encouraged her to push for a laparoscopy.
Around 6 months later, Paige underwent laparoscopic surgery. It revealed no evidence of endometriosis. She explained to us that a male doctor left her feeling humiliated when, soon after she awoke from surgery, he said, “[W]hat you have done [supposedly wasting their time] is serious, and you need to consider if you have psychological problems.”
Paige has lost trust in the National Health Service (NHS). She is now focusing on educating herself on how she can manage her pain using holistic therapies.
The negative feedback cycle and ‘stereotype threat’
We also spoke to Mel and Sarah, both 30 years old, who experienced years of debilitating pain that doctors eventually diagnosed as severe endometriosis.
One similarity in both stories is the constant dismissal of their reported pain, despite the fact that the severity of the condition (unknown at the time) was causing extreme symptoms that they feel should have warranted specialist investigation.
Both women spoke about the pain being so unbearable that it would cause vomiting and fainting. The inconvenience and sense of embarrassment associated with trying to navigate extremely heavy periods while working also affected their mental health.
There were also a few occasions where they both questioned the validity of their own concerns as a result of the lack of healthcare-related empathy in their cases.
In the earlier stages of investigation, Mel asked her GP if they had considered endometriosis or fibroids as the cause of her pain. To this, her doctor replied, “Hmmm, maybe, as it’s common in ‘BAME’ [Black, Asian, and minority ethnic] people.” The doctor still prescribed birth control pills to manage the pain, despite later finding out that she also had a case of fibroids.
Sarah also spoke about a time when she had a doctor’s appointment, and a doctor discussed her case in a nonconfidential patient waiting area. She explained that this particular situation made her feel “worthless” and showed the “lack of care in maintaining her dignity.”
Both experiences highlight negative medical interactions through a loss of patient-centeredness and the removal of patient autonomy. This, in turn, breeds “stereotype threat” and hinders interactions between the patient and the doctor.
Mel continues to research lifestyle changes and natural remedies that will help her manage her pain flare-ups. Sarah underwent three surgeries to manage the pain and is now pregnant with her first baby.
Self-funding
We also spoke with Liz, 33, and Hafiza, 30. They both waited approximately 10 years to receive a diagnosis of stage 4 endometriosis.
Healthcare providers left both women “to their own devices,” meaning that they needed to self-fund their specialist investigations and treatment. This is because they faced significant delays in investigating their long history of pain cycles and had to manage with prescriptions of the birth control pill.
In Liz’s case, the severity of the endometriosis affected her bowel and bladder. It also compromised her fertility, as the condition caused scarring and blockages, leading to the removal of both of her fallopian tubes. Liz is now undergoing IVF treatment.
Similarly, Hafiza underwent surgery to remove two parts of her bowel, remove her appendix, resection her bladder, and place a stoma bag. Despite all the difficulties she faced, she now has two young children.
Lessons learned
One thing that each of these eye-opening accounts highlights is the need for early intervention in gynecological and reproductive health investigations and self-advocacy to “follow one’s gut” when something feels wrong.
The case studies we heard have shown how desperation can cause a person to take matters into their own hands.
However, the implications rest on the intersectional difficulties that Black women may face regarding their class and socioeconomic background, where a lower status can hinder a person’s access to private healthcare. This, in turn, has detrimental effects on their health outcomes.
An interview with Dr. Christine Ekechi
We started our discussion with Dr. Ekechi by summarizing the case studies we heard.
Dr. Ekechi, in part, reaffirmed and contributed her own explanation as to how and why these experiences and differential outcomes occur. She also explains how the Race Equality Taskforce plans to tackle these issues.
We have edited the interview below for clarity.
MNT: The RCOG are committed to working with various stakeholders, including the government, to eradicate racial bias. What will this involve?
Dr. Ekechi: Well, there is a data gap that pertains to women outside of maternity outcomes. We [RCOG] are not aware of the depth of the problem, so firstly, we need to plug the data gap where it exists.
Secondly, it’s important that we understand the prevalence, so we need to be asking ourselves, “How many Black women have fibroids?” and “How does it affect their lives?” These kinds of questions delve deeper and help us understand the actual problem.
We also need to put the patient voice as a priority to gain [a] further understanding of the issues, but we can only understand this if we work with the women and clinicians on the front line of our services who have a better awareness and understanding of the issues at hand.
MNT: Can you provide further explanation of the multidimensional factors that may contribute to poorer patient outcomes for Black women specifically?
Dr. Ekechi: Black women are more likely to have conditions such as obesity, high blood pressure, [and] diabetes that put them at risk of having poorer outcomes in gynecological health and subsequent outcomes.
Language barriers can also be a factor, so research is being done to figure out how services can communicate effectively with patients to improve delivery of information.
I also push back against a simple answer that “it’s all racism” — that’s too simplistic. Racism is a very complicated web of deeper and underlying issues that will be looked into and addressed.
MNT: What role can medical research play in addressing the disparities in outcomes for ethnic minority groups, and specifically Black women?
Dr. Ekechi: We always have to know the extent of the problem, so we can start with quantitative research questions, such as:
- Is there a geographical variation?
- Is the issue changing over time?
- How many women does this truly affect?
And also, what we really need to look at is not just the fact that somebody is Black, white, or Asian, but what is their social group? [Social] class plays a huge role in this, too.
Also, how significant is a preexisting medical condition? For all the women who have died, did they have a preexisting condition that contributed to the cause of their death?
[T]hen there’s also qualitative data, which is more about how people feel and behave — [t]heir belief patterns. For example, […] for a lot of ethnic groups, they don’t believe that the NHS is “for them.”
MNT: [In response to Dr. Ekechi’s comment about belief patterns] Yes, many of the women we spoke to in our case studies felt they needed to pay for private healthcare in order to feel like they were being taken seriously.
Dr. Ekechi: It’s important for us to know this because if we are working toward effective interventions, it won’t make sense if we “stand” next to groups who we can’t target or won’t come forward [for treatment]. I think, for me, it’s about thinking about ways to rebuild the trust that we really don’t have.
MNT: Is this the approach you will take in your project workstreams?
Dr. Ekechi: 100%.
MNT: How do you plan to combat this within your specific project workstream (which is focused on tackling racial bias)?
At first hand, it’s important to say that racism is a very difficult thing to address, and there will be no easy or quick solutions. We have to understand very clearly the linkage between poorer outcomes for certain ethnic groups and the lack of diversity in the health profession that serves these ethnic groups.
[S]o it’s important that we address the differential outcomes, and in tandem [make] sure that our workforce also has equal opportunities. [H]aving a workforce that is homogenous and not as diverse as the population that it serves, but also has a lot of persistent and inherent biases within it, means we would never improve the terrible statistics that we see today […].
MNT: Can you tell us a bit more about how you plan to start tackling these wider issues beyond maternal mortality?
Dr. Ekechi: Yes. The stream that I’m heading is specifically looking at women’s health outcomes, which includes maternal mortality but also the other health outcomes.
Part of the reason why I’m excited to be chairing this stream [is] because I want to move out of this narrow focus of maternal mortality and […] start to look at [adolescent] health because we are the RCOG, and so we look at the health of girls and young women.
[I]’m also excited to be working closely with other colleagues in the community, because we […] want to promote preventative health before people start getting these illnesses.
This work looks at working within the community to inform, […] and also finding innovative ways to disseminate information.
So, for example, doing a lot more podcasts and Instagram takeovers, any which way that we can reach out to all the different groups that we serve, but most importantly the younger generation, so they can have this information at hand and seek help early if they have any concerns.
MNT: As this is the last question, would you like to talk about anything else that we may not have covered that is important for our readers to know?
Dr. Ekechi: I understand that this is for the long haul, and so at the end of the day, [this taskforce] will be in place be for as long as it needs, which is forever, unfortunately. We always have to make sure that we are continually reviewing our work and the outcomes.
[T]he results will not be instantaneous, and we will make mistakes, but as long as everyone is committed to the outcomes, [we should start to] see a gradual positive change in the statistics.
[We, as a community,] need to bear in mind that the issues at hand are very complex, and therefore results will not be seen immediately. So we need to focus on staying committed to the outcomes and involving all the necessary people at the start.
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