The Role That Race Plays in the Diagnosis and Treatment of Endometriosis

Hello, beautiful people!

If you’ve been following me, you know that I recently released my new book titled, “For You, Endo Warrior: A Guide for People of Color Living With Endometriosis". The ebook is based on research and my work personal experiences as someone who has endometriosis. I go into detail about what the disease is, what the symptoms are, and I give tips on how to manage it. Specifically, I discuss how it can affect people of color. It exposes the unfair medical treatment of Black women in the United States, and how some of that mistreatment still lingers today, even in 2022.

I knew before writing this book that it wouldn't be well-received by some people, and it didn't take long for the hate to be spewed at me. Recently, I made a Facebook post that announced the release of my new book and how I plan to use my own stories to help other people living with endometriosis. A user commented saying that my story and book were “rubbish”. I guess she didn’t agree that women of color experience endometriosis any differently than White women. I know there are probably others who probably feel the same way, so I decided to take this opportunity to explain my reasons for writing this guide, with the hope that I can educate those who may not be aware of the issues that people of color face when dealing with endometriosis. I’m going to start with the basics:

Endometriosis is an inflammatory disease that causes uterine-like tissue to grow outside of the uterus. Some common symptoms are pelvic pain, painful and heavy periods, and infertility. This condition affects one in ten people assigned female at birth, and there is no known cure.

Ok..so what’s race got to do with it?

You may think, “Why does race matter when it comes to this disease; doesn’t it affect everyone the same?” While it is true that endometriosis can affect anyone with a uterus, race does matter when it comes to being properly diagnosed and treated. Allow me to explain with a few statistics:

• Black and Hispanic women are less likely to be diagnosed with endometriosis, even though the disease presents itself the same way in their White counterparts. This is likely the result of lack of access to healthcare, implicit biases, and misdiagnosis.

• Black women are likely to be misdiagnosed with a different disease such as Pelvic Inflammatory Disease, an infection of the reproductive organs caused by sexually transmitted diseases, instead of endometriosis. It was traditionally believed that the disease was only present in working, middle-class White women, which could have also led to an improper diagnosis in women of color. A misdiagnosis can cause a delay in proper treatment, allowing the disease to worsen over time.

• Black women are less likely to be believed about their pain—this is due to some medical professionals’ beliefs that Black people don’t experience as much pain (this is rooted in a racist history). There is literally a study that reports half of the participants (white medical students) believed that Black people are less sensitive to pain. One of the most notable symptoms of endometriosis is pain, so you can see how this is a problem for women of color when it comes to being misdiagnosed or undiagnosed.

I think most of us can agree that those statistics are horrifying. Imagine how you’d feel if your symptoms were dismissed, or if you were denied the proper pain medication due to a doctor’s implicit bias about your race? That’s so scary to think about it, but it’s the reality for many people, especially people of color—and unfortunately, some women have died due to medical professionals not taking their symptoms seriously.

For example, an African-American woman named Aubrion Rogers died this past January from implications related to endometriosis. She was diagnosed last year and felt that her condition wasn’t taken seriously. She went to social media and said,

“ I have been in pain daily for months. Today I went to urgent care and asked for an ultrasound," she said in a post online [per @endo.samantha]. "Found out that I have three fibroids, one cyst, one enlarged ovary and one large mass that is 11cm. At what point will my situation be considered an emergency?".

Aubrion was rushed into emergency surgery after an endometrioma cyst caused her ovary to burst. Sadly, she died in recovery. She was only 30 years old. This upsets me because her death was preventable. If doctors would have taken her situation seriously, I think she would have lived. Was her dismissal by doctors based on her race and gender? I don’t know for sure, but I do know the history of how women, especially women of color, have been wrongly treated in medical settings, so it’s a chance that her race and gender could have played a role in the doctors’ decision to turn her away. Either way, it was such a tragic and preventable loss, and what happened to Aubrion Rogers should not happen to another woman.

Aubrion's case is just one of the many reasons why sharing information about the racial and gender disparities in healthcare is critical. The general public should be aware of these issues so we can have more power to fight against the inequalities and mistreatment of minorities. Women can't keep dying due to discrimination and dismissiveness. Everyone deserves to be treated fairly, regardless of their race.

To my fellow endo warriors...

Educate yourself on endometriosis. Read as many research articles as you can regarding the disease—look at the data. Learn more about the gender and racial disparities in healthcare so that you are aware of how this disease affects women, especially women of color. Always ask the doctor questions that you have, and don’t be afraid to speak up if you don’t feel heard, valued, or treated fairly; you can find another doctor who will listen to you. Keep pushing for more tests if you feel something isn’t right! As I say often, be your own advocate. This is your health, don’t play around about that—and certainly don’t let anyone else take it lightly either.

Final words...

For You, Endo Warrior: A Guide for People of Color Living With Endometriosis can, and in fact, should be read by anyone, of any race, for reasons that I've listed above, and because the general information about the condition such as the symptoms, treatments, etc., still applies to anyone living with the condition. Just because I felt it was necessary to create something helpful for the people who are likely to be misdiagnosed, doesn’t mean I’m trying to exclude anyone else. It simply means that since I am now aware of the issues that many women of color face with this disease, I want to use my voice and knowledge to help them. I want them to know that I understand what they are going through; that I believe and support them. I’m not going to stop spreading awareness and the truth just because people have their opinions on the data that I present, so if you don’t care too much for what I have to say, just pay me no mind! :)

That said, if you are interested in what I have to say about endometriosis and you haven’t read my book yet, this is a great opportunity to download it! Thank you for taking the time to read my post this week; I hope you all have a wonderful rest of your day!