Medical Bias and Endometriosis

An abstract from a 2004 medical paper on “The Prevalence of Endometriosis among African-American and African-Indigenous Women” says “There is also some evidence that endometriosis is more commonly found in African-American patients from private practice than in African-American patients treated in public hospitals” and that very statement is exactly the truth of how I was finally able to access my endometriosis diagnosis and exactly why its so important to tell our stories and raise awareness during Endometriosis Awareness Month.

Living in the UK I had an unfortunate history of being dismissed by the doctors I was accessing through our public health system. Over the years I had mentioned the severity of my periods and life in around them and was simply told to think about going on contraceptives, lose weight or that the symptoms I was dealing with were normal and I should consider if my mental health was manifesting in stress and therefore effecting my period.

In reflection I think back on all my symptoms and the fact that I disclosed my mother’s own history with endometriosis (you see this is a condition that can be hereditary) and often wonder how I wasn’t taken more seriously and able to get a diagnosis sooner, but this isn’t a surprise.

According to an article in Contemporary OB/GYN “Black women are only about half as likely to be diagnosed with endometriosis compared to white women, according to a systematic review and meta-analysis” so is it any surprise that it took me as a Black woman the 10 years it did to finally be diagnosed by a gynaecologist.

You will also notice that many of the studies I reference are American, which further highlights the lack of studies around how endometriosis effects Black and POC globally and further cements the fact that Black and POC are disproportionally victims of medical bias.

My periods were always heavy, and they were always painful, but there were other symptoms that I experienced and spent most of my life hiding away because I didn’t want to appear “weak” because it got to the point where I was believing the doctors and when people would say to me, “it’s just bad period, you’ll be fine”.

Pain in the back and stomach (pelvic pain), pain with bowel movements, sickness, nausea, dizziness, chronic fatigue, bloating, body aches, insomnia, joint pain and a list of other symptoms linked to endometriosis, but I assumed was the normal part of life.

As I reflect on the last decade, I often find that my mind will mine little memories of chronic pain flares that I would ignore. I get flashes of images of me plastering a smile on my face until I could stumble to a bathroom and sit and freely cry!

The turning point for me came in 2019 when the pain levels I usually experienced tripled. I was no longer able to grin and bear it until I got to a safe space. Suddenly the flare ups were even more consistent and even more prolonged. The tools I had been using to cope no longer even touched the surface and I was driven once more back to my doctor’s surgery and for the first time I was seen by a doctor who took my symptoms seriously.

By 2020 my long time suspicions were confirmed and I was felt relief. Relief that I was finally able to confirm what I knew to be true. Relieved that I would no longer have to beg doctors to believe the chronic pain I had been experiencing. Considering there are actual studies on racial bias and pain management, it felt like I had finally won a battle that felt had been raging for as long as I could remember.

Unfortunately, my journey is far from over in terms of facing medical bias for being in a marginalised body, because after finally getting the diagnosis I needed, I was also met with extreme fatphobia in which my health is measured against BMI, something that has been proven for being an inaccurate measure of someone’s health.

It has moved me into considering a more holistic approach to my care and even then it is worth remembering that Black and POC communities typically have a lower access to natural therapies and the anti-inflammatory products and produce they may need to improve their overall level of health.

The work is far from over and sometimes feels has barely begun in getting Black and POC the access they need to proper and fair treatment and care, but we can do better and we must do better so that the generations to come are not experiencing the same levels of medical negligence because of bias.

So during Endometriosis Awareness Month, as our communities fight against a system designed to keep us from getting the help and diagnoses, we may need, remember that awareness doesn’t just become about the individual, but about the collective and reaching those who ordinarily may not have the information they need to reclaim their bodies and their experience with it.

Michelle is an actor and writer passionate about representation for the Black community, inclusion, and body acceptance. She has had her articles and essays published in UK Pride, Huffpost Blog, WFIL, Scottish Wedding Directory The Un-Edit, and The Black British Bulletin. Check out her website or follow her on Instagram to learn more.