Systemic Racism in Endometriosis Healthcare

Leah says, “I had years of chronic pain, horrible menstrual cramps, nausea, and more awful symptoms. All were dismissed as nothing more than a bad period for which I needed to take an over-the-counter pain killer and “deal with”. It was a terrible feeling to be in such pain all the time and no matter how many visits to the doctor, have my pain ignored as though I was just making it up or could handle it. It took years and several doctors and specialists for me to finally get a proper diagnosis. I don’t know if my experience was racially motivated, but it is similar to what I have read about and heard from other Black women.   

Couple this with the fact that I have uterine fibroids and the story gets even more and more difficult to understand.  As soon as the fibroids were diagnosed, all symptoms were automatically attributed to the fibroids and could not possibly be related to anything else.  Any health complaints and there was no worthwhile need to investigate things further; “it is your fibroids” was often the response.”

Tami adds, “For several years I was told that my constant cramps, nausea, and heavy periods were due to fibroids. Unfortunately every time I saw a doctor they would read my chart and never take into consideration my symptoms. When I was diagnosed with stage IV Endometriosis it was heartbreaking. I kept thinking that if only a doctor listened to me and looked beyond fibroids, my endometriosis wouldn’t be so severe.”

Race may impact a woman’s ability to access healthcare, medications, alternative therapies, surgery, and healthy food. Race and class are so tightly entwined and in some cases, women may not have the ability to find ways to eat a healthy antiinflammatory diet, which requires eating fresh food options. Many women may not have private insurance and extended benefits. These benefits are limited and not everyone can afford to pay out of pocket for therapies such as massage, acupuncture, naturopathy, pelvic physiotherapy, etc.  This additional barrier may contribute to further challenges.

There are also very few Black womxn, in positions of power or fame, who have Endometriosis and talk about it. Tami states, “When I was diagnosed with Endometriosis I did a lot of research and read several stories about women’s experiences. Unfortunately I didn’t see anyone who looked like me sharing their story. This reminded me of when I was a little girl and not seeing myself represented in books, on television or even seeing a Barbie Doll that looked like me. It is really important that Black womxn are valued on all platforms. 

My hope is that black womxn who visit our website, Endometriosis Events, can see that our experiences matter and realize the importance of using our voices.”

We need more individuals to speak of their experiences and name this condition, which affects so many of us. High profile advocates often bring much needed awareness to issues and can be a great ally in a fight for recognition and a cure. 

I think Black patients need to reach out to other Black individuals with Endometriosis to find out if they can help them on their journey to living with this condition and identify the tools and resources that are available to them. Black womxn need to be connected with others who also have Endometriosis. These women can direct them accordingly to books, blogs, websites, materials, etc. where they can find help. Also, healthcare practitioners who will be able to assist them with navigating the system and seeking the proper channels for help and care.

We also need healthcare practitioners to recognize these biases and start learning about Endometriosis and race when they are still in medical school. These tools and practices can then be carried forward to their practices and help with the care of womxn with Endometriosis.  

If there is someone out there who is going through the medical maze of trying to get a diagnosis or treatment for Endometriosis and/or pelvic pain, I would encourage them to advocate for their health. Attend appointments with notes about what you are interested in talking about and what questions you would like to have answered; ask around and seek out a doctor and/or specialist who listens and will act on your behalf; keep a journal of your experiences, appointments and encounters with all nurses, doctors, etc.; do not be afraid to ask questions; continue to advocate for your health and don’t give up!