When did you find out you had fibroids, and what led up to your diagnosis?
As a teen I had intense cramps soon after getting my period for the first time. Midol or Advil coupled with hot compresses ruled my monthlies, but it wasn’t enough. Like clockwork for the first 24 to 36 hours of my cycle I writhed in pain, wailing and vomiting. Seeking solutions, my mom took me to my primary care physician. So at 14 years old, I was pushed on to birth control pills with no alternatives offered. For over a decade after that I continued to manage severe cramping, heavy bleeding plus bonus bloating with both the pill and pain meds in my medicinal mix. I finally went to the gynecologist and was told I had intramural and submucosal myomas or uterine fibroids in my mid 20s. At the time there were three all under 1.5 centimeters in size. I was then advised to keep an eye on them for fertility sake.How have they impacted your daily life—your mental health, your career, and everything in between? What’s been the hardest part?
Fibroids run you. I legit schedule life around my period. Mentally I’m constantly worried about breakthrough bleeding because what if my pad and tampon combo that needs to be replaced every two hours fails? Evaluating and deciding whether I should attend this event, speak on that panel, travel on those days, sing with the Resistance Revival Chorus on that paid tour date, propose a different date for a client experience, or leave the house at all—period. Prior to working for myself, when I went into an office, I would be forced to miss days. Luckily I had managers who showed empathy. Physically the pain is unbearable, breaking me down to fetal position, blacking out, and weeping like a baby. If that isn’t enough, add on frequent urination, protruding belly, and passing blood clots throughout my heavier and longer period. The inflammation changed my sleep pattern as I got closer to p-day. I also developed slight anemia. The physical scars from the myomectomy are my first keloids, occupying significant space on my midsection. I worried about these tumors—although non cancerous causing depression due to the devaluing of my vessel. Their presence added to my already altered body image/shame. No longer feeling as desirable, body scarred, and still without resolution as they remain. For me, the hardest part is lack of medical research around fibroids due to the intersection of it being an issue that predominantly affects Black women. We are almost three times more likely to have fibroids, develop them at younger age, have more and bigger fibroids, and manage more severe symptoms. Additionally, the rate of hospitalization for fibroids is three times higher for us than white women.What treatments have you tried, and which have been the most useful? As someone who works in cannabis, can you recommend some more holistic remedies?
I’ve tried several different methods to deal with my fibroids. I have used oral contraceptives coupled with the “wait and watch approach.” During that time my gynecologist checked their size at my pelvic exams. I also had a robotic laparoscopic myomectomy. I discovered that Black women are two to three times more likely to undergo hysterectomy (full surgical removal of the uterus) for fibroids and seven times more likely to have a myomectomy. Before going through with the myomectomy, I tried more holistic paths to reduce fibroid size. A friend suggested I look into monthly acupuncture. It was the first time I’d ever even considered it and the practitioner was very kind and knowledgeable. Based in the LES, they also would prescribe specific blends of Chinese herbs from Kamwo to ingest in the weeks leading up to my period. I was told that uterine fibroids are related to the imbalance of qi and blood. The herbs are ae both a preventative measure as well as potentially reducing fibroids around four centimeters or less. Post-surgery, heavy bleeding, bloating, and pain remains because they opted to leave some fibroids behind to preserve the integrity of my uterus. Therefore to reduce inflammation and cramping, I’m an avid user of Foria CBD suppositories and Xula herbal blend drops. I have also heard that reducing processed food, red meat, sugar, dairy, alcohol, and smoking could help along with adding green tea, fish, legumes, fruits, and veggies, especially iron rich.
“Fibroids run you. I legit schedule life around my period. Physically the pain is unbearable, breaking me down to fetal position, blacking out, and weeping like a baby.”
Were there ever times you didn’t feel seen and heard by your doctors?
Wow, this is really forcing me to dig deep into the trauma memory banks. Black women have higher rates of hospitalization for fibroids compared with white women. In a world where racism and sexism pervade all institutions, medicine has been particularly hostile to us. So to answer this question, yes, I was treated terribly by multiple doctors and staff throughout this incredibly traumatic time.Have you experienced any bias firsthand?
Yes, I was forced to confront bias almost with every interaction within the American health care system. I was in Djerba, Tunisia with my ex-husband’s mom in September 2016 when I was debilitated by horrible cramps, nearly fainting from the pain. She took me to get scans in a clinic and even without insurance it was a minimal cost. It was also super efficient and clean. No waiting for weeks to get results. They took the images and we returned the next day to review them. So much more painless than the American system. They shared my fibroids had grown significantly and I should look into treatment options upon my return to the States. That winter, my doctors in New York confirmed that my fibroids had grown significantly. Over the course of two months, appointments were canceled without notice, explanation, or concern for my wellbeing. I traveled into the city for my appointment to be told it was canceled, and the same thing happened in March 2017 with two appointment confirmations and a reschedule. All I wanted was advice as to how to move forward, but the doctor never responded to repeated outreach. Finally I met with her and she told me I needed an MRI. I made an appointment, arrived, and was told I could not have the MRI due to “an issue” with my insurance. The third major infraction. I had traveled from Rockaway—no call or message to inform me of the issue in order to get it resolved prior to my arrival. Insert heartbreak. These doctors showed neither care nor ethical medical responsibility, dehumanizing me by devaluing my time, physical and mental health. By mid-May I was asking for radiology to send me the images so I could get a second opinion from a different hospital—hoping for a shift into a more human connection and conversation around the course of treatment. Sadly it only got worse. Doctors are motivated to make money because our healthcare system is not made to care for us, they’re incentivised to create wealth for corporations. Microaggressions ranged from not responding to questions, to misspelling my name repeatedly after being politely corrected, to curt responses. Over the course of a few weeks, the consistent disregard for me as a patient was normal practice. I told them I’d like to work on hormone regulation. Asking if there were treatment options beyond surgery. That idea was flatly and rudely rejected. I asked the doctor in charge of my care/surgery if changing my diet would help. I will never forget how she callously scoffed at my inquiry. Making me feel stupid for even suggesting holistic solutions. When I finally went in for the myomectomy on July 24, 2017, I was shocked by the several thousand dollar bill they presented me with upfront. The doctor neglected to share that I’d have to pay before I got my insides carved into pieces. I got emotional and began crying due to what felt like icing on the cake of thoughtless/neglectful care. My ex-husband, mother, and I spoke to an administrator to take care of it and I was wheeled into surgery.As someone who works in people advocacy and self-care, how has dealing with a chronic condition made you better at both of these things?
My self-care practice around fibroid management has stabilized. I work with plant medicine in the form of herbal tea, CBD drops, and suppositories. I also publicly share my experience (on panels, social media, and with friends) to normalize the condition, plus products that work to help others discover alternatives. I’ve realized the commitment to a specific cadence for treatment coupled with educating the community rather than hiding behind shame and perceived isolation helps tip the scale toward balance. When I posted on IG [about my surgery], it was incredible how many women came out to ask for advice or share they were considering the same surgery. We are not alone, and don’t have to be.“Black women have higher rates of hospitalization for fibroids than white women. In a world where racism and sexism pervade all institutions, medicine has been particularly hostile to us. I was treated terribly by multiple doctors and staff throughout an incredibly traumatic time.”
