The Silent Struggle of Black Women with Endometriosis

By Ashley Williams

Endometriosis is a chronic health condition in which endometrial tissues that line the uterus grow on other parts of your reproductive organs like the ovaries and Fallopian tubes. On some occasions, endometrial tissue found on other organs like the bladder, rectum, or even the lungs. These new growths often cause excruciating pelvic pain and heavy menstrual bleeding.

I’ve known that it was a possibility I had endometriosis for about a year now. I say potential because technically, you cannot get a firm diagnosis until you have a larascopy surgery to verify the diagnosis. A hardened belly was enough for my primary care physician to suspect something going on down under. Was it uterine fibroids? Cysts? Two ultrasounds later, my OBGYN, at the time, convinced it was likely endometriosis.
If you get a diagnosis of endometriosis, the first thing the doctor is going to mention is “managing” the disease. Endometriosis is a life long disease, and symptoms can be managed. The goal is to suppress or slow down the growth of endometrial tissue. The thing is if the growth becomes too big and symptoms increase, but either way, it has been removed. From my experience meeting with so far three OBGYN’s, the only way to suppress these growths is through hormonal therapy, aka “birth control.”

For the past few years or so, I have been against birth control. Now I don’t have an issue with people using these methods. There are so many reasons why people do. It’s just in my experience; birth control has always messed me up bad. I’ve tried just about everything except an IUD. But, I decided to go back on it when I started seeing a new doctor. I mean, the growth was growing, and I was concerned about my health, and my symptoms were increasing. My doctor suggested hormonal therapy; this puts you in temporary menopause (they say without mensuration, the endometria tissue won’t grow). So this would have been a good thing according to my doctor and my health, although I felt weird about a temporary menopausal state; I mean, I’m 25. However, since it’s a pricey new drug, I needed to try something else first.
My doctor and I went through a list of birth control options (remember I tried almost everyone). “How about Depo?” The Last time I was on the depo prefer a short; I was 14. I could not, for the love of me, remember what it was to be on it because I only went through one sequence. “Um… well depo has bad reactions for Black women” My doctor (a fellow Black woman) went through some of the chief complaints that Black women express while on the shot. She quoted a study. I was skeptical. “We can just try it and see how it goes; if you don’t like it, we’ll try something else” Despite my better judgment, I agreed. I mean, the new OBGYN I chose was a black woman, she seemed like she cared about me and my needs, and all her reviews were terrific. I thought I could give it a shot! (Pun intended).

woman in white crew neck shirt and black jacket
Photo by Mosun Fadare on Pexels.com

The first few weeks on this new birth control was decent. I kept a detailed journal of my symptoms, but things were going great until they were not. My doctor said I could expect spotting and light bleeding as the body got adjusted to the birth control. Light bleeding is a different story than having a full-blown period for three months straight! It was like my worst day, every day! I hadn’t been in this much pain since I was 14, then it clicked! These were the same symptoms I experienced back then. But now I am a working adult with a full-time job and essential things going on in life.
I became desperate during the three months trying to understand what was going on in my body. Wasn’t the point to not have a period? Then what is happening, I thought? My body was overworked, I couldn’t get out of bed, I was in excruciating pain most of the day. Thank God I was working from home. No doubt, productivity was way off. I became depressed and started to hate my own body. Why me? But I was determined to get out of my funk.
I started to research endometriosis more and pain management techniques. I, of course, switched birth control and started on the mini pill. I am learning how to take off my body in its current state. I hope that the surgery I have in a few days will help manage the disease and help with the pain. My experience, although personal, has made me want to be a voice in this siloed community. No one talks about this disease. No one talks about the struggles of finding proper pain management, and black women often left out of the discussion.

Black women are affected differently by medication then our white counterparts, and I wish doctors would be truthful and acknowledge this. When we refuse to recognize this, it is how we kill Black women.

I hope sharing my journey inspires someone other Black women out there to be self-advocate.


AshleyWilliams

Ashley Williams is a Contributing Writer for the Pedestal Project, LLC.

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