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kc-james · 2 years

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Endometriosis & Racial Disparity in Healthcare

Hey Yall,

So last week I gave a brief overview of who I am and some of my story. I wanted to discuss and will be discussing a lot when it comes to discrimination in health care for WOC/POC. I will not only speak on my personal struggles with dealing with bias with my conditions but as well as the birth rate and more.

Do you know what racial disparity is?? Well let me sum it up for you with a quick example; AA people are more likely to be killed by police officers whether they pose a threat or not. My example may ruffle some feathers, but that's why we have an open discussion with positive communication.

So moving on. Endometriosis is described to affect 1 and 10 women worldwide. Last year when you would look up those at risk for endometriosis you would only see it described for caucasian women. Fortunately, that has changed but not enough. I take into consideration, that I am a Black woman, with black genes and my whole genetic makeup differs from a caucasian woman. I look at the data that was done to test 13,500 UK women and I think how many were WOC. They necessarily don't have to be AA but what about Asian American, Hispanic American, etc. With all my research I was unable to come up with identifying factors to determine the data of race for these women. I am aware there are a plethora of clinical trials and things of that nature. That’s not the point. America has used POC as guinea pigs for far too long.

(((This has been updated but this was on the website April 2021. Think about it))))

Let's be real, this America was never designed for the care and treatment of POC. I can mention the syphilis experiment but that’s is only one small part. We have individuals like J.Marion Sims who thought it was a bright idea to test on black women without proper anaesthesia. He not only created an untrusting relationship between doctors and African American women. Some may have the ideals because these women were “enslaved” he was able to do whatever he wanted. Just simply because those women were considered “property”.

Can you imagine? Another human believes another human suffering is okay because they have brown skin and they were considered property. Which they had no choice over. They did not choose to be born black women or to be tested on. Yet he chose, he was not the only person who took advantage. Sims, was able to get his research and his schooling from Philadelphia and moved on down the road to NYC and conducted these procedures on white women utilizing anaesthesia. He was just as bad as the “Angel of Death” if you don’t know who that is, please do some research. Even research the things I am saying outside of my personal truth.

As time continued a woman by the name of Henrietta Lacks went to John Hopkins hospital for vaginal bleeding. Ms.Lacks was diagnosed with cervical cancer and her cells were sent over to Dr. Gregory Gey, he had acquired many cells from John Hopkins. These cells were special. Her cells were special we aren’t going to sugarcoat the facts. She was special everything about this beautiful black woman was special. Ms.Lacks did not know despite her battle with cervical cancer her cells would change the course of medical history. You do realize that these cells were taken without her permission, she was tested on and used to change medical history without her consent….

I know exactly what that feels like, to have something taken from you despite your pleas and despite your request. You put your trust in healthcare “professionals” to do the right thing, to do what was discussed during the time of care. I have been living in chronic pain for 20 years. I know a joke right, unfortunately, that is my truth. I got my period at 9 years old. I have been in and out of hospitals since 13 years old. I was the guinea pig for multiple multiple birth controls at 13. As a child, I had no say in my medical care. I did not know enough to advocate for myself. I am not just a black woman, I am a survivor, a warrior and so much more. My dark skin may limit me through other people lenses. I fight for myself, I advocate for other black women because we deal with so much discrimination and microaggressions when it comes to speaking up for ourselves.

I have been fighting for my fertility as long as I can breathe. My ovary was removed despite me explicitly saying I wanted to have children. The surgeon who performed this surgery was so unkind to me and wanted me to do what he wanted me to do. I was not allowed to ask questions and baby don’t dare ask about the medication they were referring to me. That experience was so traumatic. I was always in pain, I was always crying and I felt like death had to be better than my reality. I wanted to end it all.

I came across this Instagram page around the time and I decided to start thinking holistically. I studied and studied and created regimens that worked for my flare-ups but nothing could stop the debilitating pain during my menses. I was unable to walk, sometimes talk, vomiting blood and bile for days. I was so strong willed and due to my bad experience trusting western medicine was the hardest thing for me. Until this day I will not even take a Tylenol. To have a doctor call me a drug addict because of my pain changed everything for me, to be verbally abused in my time of need made me look at the world differently.

My ovary was taken without consent on March 27, 2019, and on January 26, 2022, I had my hysterectomy. I did a lot of research and cried a lot of tears my dreams of being a mother going through a water birth or feeling the butterflies your baby kick would create. This decision was not made lightly and the doctor who did my last surgery was my very first surgeon when they found an 8cm cyst on my left ovary. He was not the doctor who took my ovary in 2019. This doctor and I discussed forthright what I wanted to be done in order to relieve my pain, it is funny when you have doctors who have that power over an individual in the operating room. He gave me hope to be able to experience life outside of the four walls that surround me.

I have never been to a beach before and as a grown woman some things you just want to experience. My doctor was very respectful about what I wanted and all of my questions and the fact he and his team treated me like I was human. Let me repeat, they treated me like I was human and they all adored me and my energy and I can say that for a fact because I checked lol. I can say being a black woman dealing with the atrocities in health care and life in general, especially a dark skin back woman. To have to deal with microaggressions from your own people when you advocate for yourself and the “professionals” have no negativity towards you wanting to know what is going in and out of your temple. This is an experience, it is a fight. You have to fight for you, you have to use your voice despite anyone's opinion who has not endured any of your pain or hurt. How can anyone tell you that asking questions is disrespectful or advocating for yourself is disrespectful? You do not deserve to be silenced, you deserve answers, You deserve to be treated fairly because no one who lives in pain wants the attention of toxicity, they want to be able to live a fruitful life and it is your right to choose you at all cost. The team I am currently working with, they want me to live. They respect me and my energy and that helps when you are fighting a losing battle….

Reminder: Do not let anyone silence you!! No matter if it's a “professional” friend or kin…

Your voice needs to be heard!! You are not wrong for setting boundaries when it comes to policing YOUR OWN BODY!!

Baby because you only get one and who else lives in your flesh??

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