I had surgery last week. Technically, it was not surgery; it was a “procedure.” But if I’m not conscious, there’s an IV and you’re giving me schedule 2 narcotics for pain, I’m calling it surgery. Just to let you know, I’m fine. But I want to tell you about it because I’m angry.
I had fibroids tumors in and on my uterus. This is not so unusual. About 25% of Black women suffer from these benign tumors before age 25, and 80% by age 50 (so y’all know, I’m not 50 yet). This is disproportionately a medical condition that affects Black women. Studies show that Black women experience fibroids at a rate of two or three times their white women counterparts. While medical professionals have some ideas about this, no one really knows. (Personally, I’m the most convinced by what Queen Afua says about this in her book Sacred Woman). Because Black women experience fibroids at a younger age and at a greater rate than white women, we are also 2-3 times more likely to undergo surgery as treatment.
My mother and grandmother and aunt all had hemorrhaging fibroids – which were treated with hysterectomies because that WAS the treatment in the late 1970s and earlier. I am grateful that these surgeries saved their lives. Most women can bleed regularly without dying, but that is not true of all women. These surgeries allowed them to live long enough to be great moms, aunts, grandparents, citizens, partners, friends and cousins.
My fibroids were first discovered in my early thirties. I had a wonderful Black woman gynecologist who explained things to me clearly and slowly and gave me multiple options and chose the least invasive given that I wanted to preserve fertility to birth babies from my own womb. That was the plan at the time. The fibroids grew faster than my timeline for pregnancy so I needed a more invasive surgery that required six weeks of recovery. I felt confident with this surgeon (who was also my obstetrician – older white Irish man), and I was able to get pregnant fairly easily and carried my daughter to term. Yay! Love that kid!
I had a good 10 plus years of no conversation about fibroids until 1.5 years ago when my white woman doctor mentioned an enlarged uterus. Probably fibroids, she said. I didn’t think much of it. Largely because the two years after my mother passed are one big blur. When my gynecologist said this again this year, I asked more questions. “Well, let’s get an ultrasound.” As the white woman ultrasound tech conducted the scan, she gasped telling me how many fibroids I have and the sizes of the largest of them: 25-30! She said my uterus was the size of being 4.5 months pregnant.
“But I’m not pregnant,” I replied.
“Good thing you are a small person,” she replied. Y’all, she said the quiet part aloud.
I was scheduled to meet with other doctors on unrelated issues but I wanted to have my full medical record. My gynecologist would not release the results of the ultrasound. One very hot summer day, I camped out in the doctor’s office for four hours waiting for someone to give me a piece of paper with my results of the ultrasound of my uterus. Receptions refused; there was no online system; we could mail it to you; you need to meet with the doctor first. I finally got my results but I was angry. Because I had to have the privilege of having four hours to camp out in an office to get my own test results. What is that about?! When I asked about options to treat, I asked about ablation and embolization – processes I learned about in my 30s but were not options to preserve fertility. My doctor said, “Those won’t help.”
“What should I do?”
“When you hit menopause, they might shrink. Basically do nothing.”
“For years?!:
That didn’t even sound right to me. I have 25-30 tumors, I look halfway pregnant to baby and I should do NOTHING?! I was tired and angry and went to my next doctor that same afternoon.
I was still bothered by this so months later, a medical professional friend got on text and phone with me and we took to the internet for research. I had my report. I googled every word of it. I downloaded articles from medical journals. We looked at treatment programs all over the country. She texted me links of doctors and essays. I texted her the same.
“We’ll figure this out together, Monica.”
I began by getting second, third and fourth opinions. I didn’t know if my insurance covered it. I didn’t care. My gut told me that something could be done. My research gave me all the detailed questions to ask.
A Black male doctor ordered more detailed tests and I didn’t wait for results. I got that MRI CD before I left the office. For the next two weeks, I made appointments in Delaware, Baltimore, Philadelphia and places in between. I spoke to a South Asian doctor in Atlanta who referred me to his white Jewish friend in Philadelphia. After a 30 minutes virtual consult, I knew I had found the right doctor. I knew because he said this to me:
“Fibroids affect Black women more than any other women in the United States and doctors perform about 400,000 hysterectomies per year in the U.S. [The actual number is 600,000] and that means that about 300,000 Black women are getting hysterectomies that they probably don’t need.”
Yup, I’m working with you. I’ve been mentioning the race of the clinicians I’ve encountered because I think race has a lot to do with the experiences I’m having. And this is this white Jewish man one to say: You’re not crazy; it’s a problem; there’s another way; and I’m damn good at it.
And he walked me through my CD and showed me images and told me that symptoms I didn’t even know I had would be relieved before I knew it. I met with him about an hour or more before the procedure and he works at a local clinic of a national system that does nothing but treat fibroids. Did I mention that his offices are 1.5 hours (not in rush hour) from my home?
I’m telling you all this because people with uteri don’t talk to each other about these things enough. And people without uteri don’t hear about this enough. And there is absolutely no shame or silence that needs to persist because I’m talking about uterine/ women’s health.
And I’m angry. I had to have so much time, income and intellectual privilege and a gargantuan amount of advocacy and friendship and trust in my own gut. The uterine artery embolization I had performed has a recovery time of one week. And that was one long week of relying on hired and donated childcare to help my kid keep being a kid while I recovered. I make no promises about what homework looked like that week.
I’m angry because Black women are dying, getting unnecessary procedures and suffering because of racial bias and … medical incompetence. I’m angry because of all the privilege I had to pull this off that most people do not have. I’m angry because it’s all just wrong – even though I happened to have a happy ending.
I hope you’re angry too. Or you’ve learned something. And you can always reach out to me with questions or virtual hugs.
But what to do with this anger? A colleague recently wrote a compelling memoir where she discusses medical bias (among other cool things) and I want to tell you about it: Uche Blackstock’s new book Legacy: A Black Physician Reckons with Racism in Medicine. Buy it. You can also continue to donate to organizations who are working on Black maternal health. I’ve recently begun volunteering with a local organization: Black Mothers in Power. You can DONATE HERE.
And if you just want Girl Scout cookies, you can order some from my daughter HERE (see how I did that?)
Thanks for listening to my rant. I love you and your wombs and your womb-loving selves!
Dr. Monica
