WIDLIMS Podcast ep #9 – Endometriosis, pain bias & the ‘strong Black woman’ stereotype
New podcast episode with Anita Jones, journalist and Endometriosis UK Ambassador
In this week's episode, I chat to Anita Jones (she/her) about...
- her personal experience with endometriosis
- the endometriosis diagnosis gap
- what the general public and doctors need to become well-versed in and learn so that the diagnosis gap is shortened
- sexism and gendered racism in the endometriosis field
- a whole lot about endometriosis symptoms, periods and seeking help
You can follow Anita Jones on Instagram @anitannekajones, and find out more about endometriosis via Endometriosis UK on their website and social media channels.
As always, this is an episode for educational purposes only. I would highly recommend reading the article below and checking out the references and resources.
I would also like to mention that endometriosis can affect others than women. It can affect anyone who menstruates, and not all those who menstruate are women. People of all genders may have periods, and may have conditions typically thought of as belonging to the realm of women’s health, including endometriosis. In the episode, Anita and I discussed women’s pain and women’s experiences, but we must move beyond that in order to be inclusive, and to show and accurate picture of the truth.
Here is an amazing video from BBC 3 Body Language trying to illustrate how it feels to have endometriosis.
Mentioned in the episode
Anita’s Instagram post commemorating her endometriosis surgery: https://www.instagram.com/p/CB7rjD4gFBL/
Anita Jones for BBC on Endometriosis (3 minute clip on YouTube)
Anita Jones on her experience with coil insertion (YouTube)
‘Strong Black Woman’ stereotype and endometriosis
Gender bias in healthcare – with dangerous consequences
Article on racism and endometriosis (see article/references/resources below for more evidence!)
Background reading: on endometriosis and dismissing pain.
How sexism and gendered racism are engrained in medicine, including the field of endometriosis
Being a woman myself, I have always been interested in women’s health issues (NB, although the field is generally called “women’s health issues”, I do not think it is an appropriate term as there are people who are not women whom the following information still applies to, such as trans men with endometriosis, and non-binary people with uteruses).
The pain of women and gender-non conforming folks is not taken as seriously as that of cis men (1). Furthermore, pain of Black people is often disregarded due to systemic racism. If this is a shock to you reading this, know that there is evidence to back these claims. I would suggest reading the BBC articles on pain bias by Billock and Dusenbery for more about medicine disregarding women’s pain – surprise, surprise, endometriosis features (2,3).
Women are more likely to wait longer for a health diagnosis and to be told it’s ‘all in their heads’. That can be lethal: diagnostic errors cause 40,000-80,000 deaths in the US alone.
Maya Dusenbery, BBC Health Gap.
In the wake of the Black Lives Matter movement gaining more mainstream attention in May/June 2020, social media was florid with statistics, research and facts shared highlighting racial inequalities. Medicine is not an area free from systemic racism. Death rates for pregnant women who are Black are five times higher in the United Kingdom, than for their white counterparts, as detailed in the MBRRACE report. Gynaecologist Dr Anita Mitra “Gynae Geek” shared some infographics on her Instagram showcasing racism in the field of obstetrics and gynaecology. Already aware of how women’s pain has historically been disregarded and labelled as “hysteria” and so on, I started to read more about how Black women are further affected due to the intersection of racism and sexism – so-called “gendered racism” (4).
Endometriosis’
A blog on the Endometriosis Network Canada website further explored this topic when it comes to ‘How the “Strong Black Woman” Stereotype Hurts Endo Patients’; this is a stereotype in which Black women are perceived as being able to bear more pain than white women (5,6). I would highly recommend reading that blog post for a mix of evidence-based writing and patient accounts of their personal experiences.
Endometriosis affects about 10% of women, and is a condition in which menstrual tissue (endometrium) forms outside the uterine cavity, where it should normally grow and be shed periodically during the menstrual cycle. In endometriosis, these tissue deposits may be located in other areas in the pelvis and abdominal cavity, such as on the ovaries, Fallopian tubes and the abdominal wall coverings (peritoneum). This can cause many different symptoms, such as pelvic pain, pain when having penetrative sex (dyspareunia), fatigue and infertility (7). Anita and I talk more about symptoms in the podcast episode.
To this day, we do not quite know why individuals develop endometriosis. It is regarded as a chronic inflammatory process (8).
Historically, endometriosis was considered to be a disease affecting white upper class women, who were more likely to put off children or become pregnant later in life – which was believed to be the main cause of the condition at the time, as detailed in a an article by Bougie et al (9). They discuss how that is due to racist narratives, and simply not the case. In the 1930s/1940s, a North American gynaecologist called Meig studied endometriosis and inferred from his patients that it was a disease more prevalent in his private patients, who were typically white and rich. Their paper also discusses how cancer used to be seen as a disease of wealthy white people, too – which is not quite accurate…! This was justified with a theory was that Black people lived more ‘slow-paced agrarian lifestyles’. Bougie et al. further write how epidemiologists themselves tended to analyze diseases according to:
‘simplistic dichotomies, primitive vs modern, white vs nonwhite, obscured more nuanced questions about the relationship between race, class, and disease.’
Bougie, Olga, et al. “Behind the Times: Revisiting Endometriosis and Race.” American Journal of Obstetrics and Gynecology, vol. 221, no. 1, 2019, pp. 35.e1–35.e5.
In the early 1970s, African-American gynaecologist Chatman contested this paradigm, highlighting its racial bias by contrasting it with his own research findings. Out of his own Black patients with endometriosis, 40% of women had initially been given the wrong diagnosis – pelvic inflammatory disease (9). This is a disease associated with infection, more specifically sexually transmitted disease.
The average wait for an endometriosis diagnosis in the UK is reported to be 7.5 years, and may be even longer (8,10). This delay in diagnosis means that women spend years debilitated by its symptoms, without appropriate treatment, management plans and support. In Anita’s case, she waited about 15 years for a diagnosis. The diagnostic delay may be thought of as being due to two barriers: patient’s delay and doctor’s delay (10).
In order to reduce the ‘patient’s delay’, we must educate the general public on menstrual cycles and what constitutes normal. Many women with endometriosis are told that their severe period pains are normal or something which runs in the family, which results in their investigations being pushed until much later.
The doctor’s delay may be more tricky to tackle… Especially, for Black women, it is necessary to not only tackle the pain bias women are affected by, it is necessary to dismantle systemic racism which affects them. Being Black means that you are more likely to be misdiagnosed with some other condition (such as pelvic inflammatory disease as mentioned above), and you are less likely to be diagnosed with endometriosis than your white counterparts (9,11).
As mentioned above, Black people are discriminated against due to engrained racist beliefs that they perceive pain differently. This means they are less likely to receive appropriate and timely pain medication, for example, as well as of course being less likely to have their endometriosis-induced pain be taken less seriously (12).
Although this article is focusing on challenges faced by Black women with endometriosis, I do want to raise the fact that of course other women who are not white (although I do not like to say ‘non-white’ as it centers whiteness as the norm and erases the heterogeneity of the group of people I mean here: Pakistani, Indian, Middle Eastern, Native American, East Asian and many more) face similar biases, discrimination and challenges in medicine and endometriosis, too. As Anita mentions in the episode, endometriosis is typically depicted as a white woman’s disease, and even the very imaging used in campaigns propagates this. There is a lack of accurate representation.
Even research itself cannot be taken as representative. The gold standard for diagnosing endometriosis is through laparoscopic (key-hole) surgery, which is invasive. Many women may however not even reach that stage of investigations due to earlier barriers to healthcare and racial discrimination. If they are not appropriately investigated, how can they receive the correct diagnosis? Furthermore, prevalence studies cannot be taken as representative. Most research conducted is based on white women. It is possible that Black women’s endometriosis affects their bodies slightly differently (13), which could have implications for diagnosis – there is not enough research to be clear on this, however, and we must remember that race itself is socially constructed and that race biology is dangerously close once genetics are used to justify biological differences. There are strong arguments for removing the race factor when studying pathophysiology, as discussed in WIDLIMS podcast episode #3 (14,15).
So where does that leave us?
Endometriosis as a whole is diagnosed very late, meaning patients suffer unnecessarily before receiving a diagnosis and starting treatment to managing their condition (note: it is not curable).
Black women and women of many minority ethnic groups are discriminated against, and face even more barriers to an endometriosis diagnosis than their white counterparts. Systemic racism must not only be acknowledged, healthcare systems must work actively to become anti-racist institutions. The evidence is currently all too worrying to do nothing.
We must educate people while they are still at school, and train general practitioners to better recognise warning signs for endometriosis, with earlier referrals to gynaecology.
Further reading
Healthline article on endometriosis + racism: https://www.healthline.com/health/endometriosis/endo-race-matters#1
Ruth Etiesit Samuel op-ed in teenVOGUE ‘The “Strong Black Woman” stereotype is dangerous’ https://www.teenvogue.com/story/strong-black-woman-stereotype-oped
Black women’s health coalition (send letters, demand change) – US-based organisation: https://www.blkwomenshc.com/
Ndao-Brumblay SK, Green CR. Racial differences in the physical and psychosocial health among black and white women with chronic pain. J Natl Med Assoc. 2005;97(10):1369-1377. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2594730/
Prather C, Fuller TR, Jeffries WL 4th, et al. Racism, African American Women, and Their Sexual and Reproductive Health: A Review of Historical and Contemporary Evidence and Implications for Health Equity. Health Equity. 2018;2(1):249-259. Published 2018 Sep 24. doi:10.1089/heq.2017.0045 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6167003/
And of course, check out the research and articles linked below in references.
REFERENCES
1) Samulowitz, Anke et al. “”Brave Men” and “Emotional Women”: A Theory-Guided Literature Review on Gender Bias in Health Care and Gendered Norms towards Patients with Chronic Pain.” Pain research & management vol. 2018 6358624. 25 Feb. 2018, doi:10.1155/2018/6358624 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5845507/
2) Billock, Jennifer. The BBC. https://www.bbc.com/future/article/20180518-the-inequality-in-how-women-are-treated-for-pain
3) Denbery, Maya. The BBC. https://www.bbc.com/future/article/20180523-how-gender-bias-affects-your-healthcare
4) Szymanski, Dawn M, and Jioni A Lewis. “Gendered Racism, Coping, Identity Centrality, and African American College Women’s Psychological Distress.” Psychology of Women Quarterly, vol. 40, no. 2, 2016, pp. 229–243. https://journals.sagepub.com/doi/full/10.1177/0361684315616113
5) Endometriosis Network Canada. Endometriosis + Racism: How the “Strong Black Woman” Stereotype Hurts Endo Patients. https://endometriosisnetwork.com/blog/endometriosis-racism-how-the-strong-black-woman-stereotype-hurts-endo-patients
6) Allen, A., Wang, Y., Chae, D., Price, M., Powell, W., Steed, T., . . . Woods‐Giscombe, C. Racial discrimination, the superwoman schema, and allostatic load: Exploring an integrative stress‐coping model among African American women. Annals of the New York Academy of Sciences,2019. 1457(1), 104-127.
7) Endometriosis UK. Understanding Endometriosis [website] https://www.endometriosis-uk.org/understanding-endometriosis
8) Agarwal SK, Chapron C, Giudice LC, et al. Clinical diagnosis of endometriosis: a call to action. Am J Obstet Gynecol. 2019;220(4):354.e1-354.e12. doi:10.1016/j.ajog.2018.12.039 https://www.ajog.org/article/S0002-9378(19)30002-X/fulltext
9) Bougie O, Healey J, Singh SS. Behind the times: revisiting endometriosis and race. Am J Obstet Gynecol. 2019;221(1):35.e1-35.e5. doi:10.1016/j.ajog.2019.01.238 https://pubmed.ncbi.nlm.nih.gov/30738028/
10) Moen, M.H. (2017), Endometriosis, an everlasting challenge. Acta Obstet Gynecol Scand, 96: 783-786. doi:10.1111/aogs.13148 https://obgyn.onlinelibrary.wiley.com/doi/full/10.1111/aogs.13148
11) Bougie, O, Yap, Ma.I, Sikora, L, Flaxman, T, Singh, S. Influence of race/ethnicity on prevalence and presentation of endometriosis: a systematic review and meta‐analysis. BJOG 2019; 126: 1104– 1115. https://obgyn.onlinelibrary.wiley.com/doi/abs/10.1111/1471-0528.15692
12) Hoffman, Kelly M et al. “Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites.” Proceedings of the National Academy of Sciences of the United States of America vol. 113,16 (2016): 4296-301. doi:10.1073/pnas.1516047113 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4843483/
13) Shade, G.H., Lane, M. & Diamond, M.P. Endometriosis in the African American woman—racially, a different entity?. Gynecol Surg 9, 59–62 (2012). https://doi.org/10.1007/s10397-011-0685-5 https://link.springer.com/article/10.1007/s10397-011-0685-5
14) Taking race out of human genetics BY MICHAEL YUDELL, DOROTHY ROBERTS, ROB DESALLE, SARAH TISHKOFF SCIENCE05 FEB 2016 : 564-565. https://science.sciencemag.org/content/351/6273/564
15) Saini, Angela. The Art of Medicine: Stereotype Threat. The Lancet. 2020. https://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(20)31139-9.pdf
