Fibroids discriminate against Black women too

I visited my gynaecologist for a routine checkup in February 2021. I wanted to freeze my eggs. Choices and resources that would have been my “ancestors’ wildest dreams”, I thought. I felt good!

My doctor smiled and directed me to her exam chair. “We’ll do a transabdominal ultrasound first,” she said. Never having done one before, I was excited. I lay down, calmly accepting the cool layer of gel on my abdomen. She began to move the transducer across my skin.

After what felt like forever, my doctor turned to me. She had seen a large mass on my uterine wall that could limit my chances of pregnancy. She asked me to get an MRI done to determine if there were other masses she hadn’t spotted.

My body went cold. All my excitement had vanished. Instead, I was confronting a problem I barely understood but now faced as an intimate threat: fibroids. I had just learned the first of what would be many lessons – and revelations – in a journey of several visits to my doctor, a litany of tests, two iron transfusions and a surgery. Overwhelmed by the amount of information I had to process, I often felt numb, my trust in my doctor sustaining me.

I’m sharing those lessons hoping that this might spare some of you a harder crash. Lesson one: Always ask for an abdominal ultrasound in your routine health check-up.

Still in a bit of a daze after that first doctor visit, I took to Google to better understand fibroids. Uterine fibroid (UF) tumours, also known as leiomyomas, are the most common benign pelvic tumours in women. Some women are asymptomatic and go through their entire life without knowing they have fibroids, especially if the fibroids are small and few.

Other women show symptoms such as abnormal bleeding, pelvic masses, pelvic pain, infertility and obstetric complications. This was lesson number two: Educate yourself on what fibroids are and be sensitive to symptoms that indicate you may need a consultation.

The irony.

I had spent the previous decade working at the intersection of gender equality and improving women and girls’ access to quality health services across Africa. Yet, I had ignored my monthly cherry-sized menstrual clot bleeds.

I explained away my enlarged stomach as weight gain. My sporadic episodes of dizziness as work and travel stress. For some reason, I was genuinely shocked to learn that my iron levels were dangerously low and creeping into anaemia territory. In short, I had very symptomatic experiences of someone with a fibroid condition.

As I sat transfixed by the information I was reading, it became increasingly clear that my ancestors’ wildest dreams had not accounted for structural inequities -gender, race, geopolitics, poverty, colonial legacies – and the direct effects they would have on my choices, health status and overall wellbeing.

Because I am African and a woman, I assumed that was synonymous with experiencing high bouts of pain. It was normal, expected. Lesson three: Pain is not normal. You need not make space for it. You deserve better.

I also learned that there was scarce to no evidence, research, or hard data on the prevalence of fibroids in Black women from Sub-Saharan Africa. The data gap was startling. This led me to lean on what I could find about Black women in the United States – and it wasn’t pretty reading.

Black American women are three times more at risk of fibroids compared to white women. Their fibroids are larger and grow faster. They are more than twice as likely to undergo a hysterectomy (removal of the uterus by surgery) for fibroids and nearly seven times more likely to have a myomectomy (surgical removal of one or more of the fibroids) compared with white women. Black women are also substantially more likely to require a blood transfusion during the removal of fibroids, furthering the complication of the surgery.

I underwent a myomectomy three months after that first visit to the doctor. Looking back, I now understand my doctor’s huge smile when she explained that my myomectomy surgery had gone well because I had not even required additional blood. At the time, I had smiled back through my own pain and fog. I was rushed to do a brain MRI right after my surgery.

As I continued to absorb more information and connect it to my own fibroid journey, a grim picture began to emerge. From the point of diagnosis to treatment, irrespective of location – the United States, Europe or in an African country – Black women’s experiences with fibroids are significantly ignored, under-researched, under-discussed, under-diagnosed, underfunded – inequitable. This was lesson four: Inequitable and varying access to care is costing the lives of Black women. This must change.

Six months following my myomectomy surgery, a friend called in tears. She told me about a woman who had gone in that morning to get her fibroids taken out. She never made it out of surgery. I felt helpless, enraged and guilty. The woman was in Sierra Leone but in the US too, Black women are 50 percent more likely than white women to suffer from diseases and complications arising from myomectomies. My fifth lesson was the hardest one: I was among the lucky ones.

These were not the lessons I had envisioned learning when I walked into my doctor’s office. In dealing with my own fibroids, I had learned about an insidious Black women’s health issue with far too many gaps and not enough solutions. Fibroids in women of African descent deserve accelerated investments in scaling access to information, diagnostics, treatment and management.

I will re-sound the alarm bells as long as is needed, calling for this Black women’s public health emergency to be recognised globally and for that acknowledgement to trigger action. I urge you to sound those alarm bells too. I urge everyone to listen. I urge everyone to care.

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