At the age of 36, Mackenzi, a licensed social worker, knows a thing or two about dealing with reproductive health issues. “I’ve had beef with my uterus all my life,” she said.

That “beef” included heavy, painful menstrual cycles that sometimes prevented her from going to classes when she was in college. Mackenzi said, “I did the pill, and it kind of maintained things for myself, but it was still very heavy. It was still very clear something wasn’t right.”

According to the CDC, menstrual bleeding that lasts for more than 7 days is considered a heavy menstrual cycle. This could require changing period products every two hours or involve passing large clots. About 10 out of 100 women experience heavy cycles, for various reasons, some of which may require a provider to diagnose and treat.

Mackenzi received a diagnosis of stage 4 endometriosis in 2011, when she was 22. Endometriosis is a condition where cells similar to those in the lining of the uterus grow outside of the uterus, often causing excessive bleeding, pain, and sometimes infertility. Research has shown that Black women receive poorer clinical care for the condition, are less likely to be diagnosed, and often have more medical problems post-surgery for their endometriosis.

Due to racial bias, Black women’s pain is often ignored or dismissed in medical settings, resulting in harrowing, life-threatening conditions for women like Mackenzi. “One night, I just started bleeding profusely to the point where I went to the ER. I proceeded to sit in the ER, basically bleeding out for hours, because I was not high acuity for them, not high enough, apparently,” she remembered. Her pain and her condition, she realized, did not register as urgent.

The incident resulted in her driving herself home with a prescription for birth control and instructions to follow up with her OB, while she was still bleeding excessively. That night, in 2016, as Mackenzi nearly passed out from blood loss, her mother urged her to call 911. The EMTs transported her to a hospital where she received two units of blood. “At that point,” she said, “they tell me I have a fibroid, which I affectionately named Phyllis.”

Fibroids, or benign uterine tumors, may cause infertility in 2% to 3% of women. Provider after provider at the hospital advised her to get a hysterectomy. “Nobody was offering any other options, aside from taking away my choice to have kids,” she said. Mackenzi was in her early 20s at the time and didn’t yet know if she wanted children. But she knew she wanted “the choice to be mine.”

She’s not alone. “No matter their race, gender, sexual orientation, locality, or socioeconomic status, everyone is deserving of access to health care that affirms their life goals,” said Dr. Jamila Perritt, a DC-based OB-GYN, and President and CEO of Physicians for Reproductive Health.

Confronted with a medical system that had ignored her pain and disregarded her future possibilities, Mackenzi realized she would have to advocate for herself. She said one doctor later examined her and said about her uterus, “There’s nothing worth saving here.” Mackenzi believed her fertility was worth saving. In order for her to power forward with a fully informed decision, she needed to know all the options at her disposal. She declined the hysterectomy. Instead, the hospital referred her to another doctor who identified her as an excellent candidate for a myomectomy, a procedure that removes fibroids from the uterus.

Even though for various reasons Black women have been historically shown to advocate less for themselves in medical scenarios, self-advocacy has been shown to improve outcomes both for Black breast cancer patients and pregnant women. Self-advocacy can include requesting more information, a second opinion, or declining unwanted medical treatments. A myomectomy gave Mackenzi time to live her life and decide if she wanted to become pregnant within that time span. She chose to receive a hysterectomy in 2021, five years later, to alleviate her pain.

The experience of having to fight for her fertility, for as long as she wanted it, and having her pain ignored, changed her as a person and as a mental health professional. “I realized, ‘Mackenzi, at the end of the day, these doctors only saw you as Black, and they treated you as such.’ They didn’t care about my education level. They didn’t care about my socioeconomic status,” she recalled.

She remembered showing her hospital staff badge as a patient to prove she was truly in pain, and not seeking to misuse substances. “It was the most humbling thing I had ever experienced and changed the trajectory of how I saw things in the medical space,” Mackenzi said.

That ordeal led her to help perinatal Black women in a counseling practice where she holds space for their pain, both physical and emotional. “When you don’t have access to take care of your physical health, then that affects your mental health, and so now there are two spaces that you don’t have access to at all,” she said. Offering community group therapy, she helps to give Black women the tools to speak up about their bodies and advocate for themselves.

Mackenzi’s training as a social worker empowered her to self-advocate, to be loud, to “go off” when her life was in danger. “I healed, I have a better quality of life now,” she said. But her experience with pain will always be part of her reproductive journey. For that reason, she is dedicated to ensuring that other Black women have the power to advocate for their own healing, one session at a time.

Dara T. Mathis is a freelance writer who reports on reproductive and mental health, parenting, and Black history. A recipient of the 2024 American Mosaic Journalism Prize, she has contributed health-focused writing to SELF Magazine and the New York Times. Her work on this initiative supports Level The Court’s purpose to empower Black women to own their reproductive health journeys.