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Two years ago, when she started experiencing increasingly irregular menstrual cycles, Abiola, 28, went to her gynecologist with her concerns. “Honestly, my biggest issue was that I just would have a period maybe once every six months, at times, or only every other month,” she said. She wanted relief from strong cramps and excessive bleeding.
Abiola was diagnosed in 2023 with polycystic ovary syndrome (PCOS), a hormonal disorder that can cause small cysts to develop on the ovaries. In the US, <a href="https://womenshealth.gov/a-z-topics/polycystic-ovary-syndrome">one in 10 women of reproductive age</a> live with PCOS. It is considered a metabolic reproductive endocrine disorder, which means that it can cause infertility and <a href="https://www.cdc.gov/diabetes/risk-factors/pcos-polycystic-ovary-syndrome.html?CDC_AAref_Val=https://www.cdc.gov/diabetes/basics/pcos.html">involve other chronic conditions</a> such as insulin resistance, diabetes, and cardiovascular disease.
Even though it&#8217;s the <a href="https://www.endocrine.org/patient-engagement/endocrine-library/pcos">most common endocrine disorder among women</a> aged 15 to 49, PCOS is <a href="https://pmc.ncbi.nlm.nih.gov/articles/PMC7860982/#:~:text=Application%20of%20the%20Rotterdam%20Criteria,as%20non%2DNIH%20Rotterdam%20PCOS">underfunded in research</a> across the country, and understudied among Black women. PCOS disproportionately affects Black women, as they have <a href="https://pubmed.ncbi.nlm.nih.gov/34928388/">higher rates of the metabolic symptoms</a> associated with the disorder. “It’s been shown that Black women aren’t listened to. So I think that that is going to contribute to the issue,“ said Dr. Lisa McLeod, a practicing OB-GYN and doctor of osteopathic medicine at Cherokee Women’s Health Specialists in Woodstock, GA.
The <a href="https://pmc.ncbi.nlm.nih.gov/articles/PMC7860982/#:~:text=Application%20of%20the%20Rotterdam%20Criteria,as%20non%2DNIH%20Rotterdam%20PCOS">primary characteristics of PCOS</a> include irregular or no menstrual cycles, hyperandrogenism (an excess of “male” sex hormones that can result in unwanted hair growth, male pattern baldness, or acne), and polycystic ovaries.
When Ken, 31, received her PCOS diagnosis at age 18, she worried about the excess hair on her upper lip, her struggle to lose weight even after working out, and the extreme fatigue and anxiety that sometimes bogged her down. “All of this stuff is happening emotionally, physically. It just didn’t feel good at all,” she said.
Abiola first heard of PCOS when her older sister, who had been diagnosed with the condition in high school, told her that it might <a href="https://pubmed.ncbi.nlm.nih.gov/18559912/#:~:text=Ovarian%20morphology%20is%20a%20marker,in%20sisters%20with%20polycystic%20ovaries">run in their family</a>. PCOS can be challenging to diagnose because providers may rely on criteria that use different combinations of two of the three features of the disorder. Women with PCOS do not all show the same symptoms. Because Abiola only fit one of the characteristics of PCOS in her teen years, her own diagnosis did not come until she had irregular periods in her mid-20s. Sharing family medical history can be an important tool to spread awareness for a condition that up to <a href="https://www.va.gov/iowa-city-health-care/stories/up-to-70-of-women-with-pcos-remain-undiagnosed/">70% of women</a> may not realize they have.
But women can face the challenge of a PCOS diagnosis with the help of a caring team of providers that may include an OB-GYN, a dermatologist, an endocrinologist, and other specialists.
Dr. Carmina Charles, an endocrinologist at AdventHealth Medical Group Diabetes and Endocrinology in Apopka, Florida, works at a clinic that helps women with PCOS find the best treatment options for them. “I strongly believe that lifestyle modification is critical. Even though there is no cure, I have personally seen patients empowered by the knowledge they receive during their visits to tackle the disease and improve their symptoms. Each patient invests in what they deem important,” she said.
For Ken, addressing her hirsutism, or excess facial hair, changed the game for her well-being after she experienced shame about her condition. “I have an endocrinologist now, and we have had more transparent conversations about hair growth, because that was super annoying. And now I do laser, which has been even an extra confidence booster, and we have talked about children, and the goal is to get my periods more stable,” she said. She also incorporates a fellow counselor and physical activity as part of her self-care.
Abiola’s provider suggested lifestyle changes and birth control as two approaches of treatment for her PCOS. Finding a pill with the right hormone dose for her needs helped her put PCOS on the sidelines of her life. She went from “seven-day periods with heavy bleeding every day to maybe two, three days of very light spotting, minimal cramps as well.” As part of her treatment for PCOS, she said her birth control helps her manage her condition and maintain the aspects of her life she values, like having a sex drive and feeling emotionally present.
“Especially when I&#8217;m able to regulate my weight better, I tend to have almost no symptoms. And then, of course, with the birth control, the period symptoms are kind of a non-issue,” Abiola added. Because she wants to remain child-free, a birth control pill that stopped her period helped both her PCOS and long-term goals.
Ken, who is partnered with a woman, has concerns about her ability to conceive a child and also <a href="https://cdc.gov/nchs/data/hestat/maternal-mortality/2021/maternal-mortality-rates-2021.htm">safely give birth as a queer, Black woman</a> in the near future. Although PCOS is a <a href="https://www.who.int/news-room/fact-sheets/detail/polycystic-ovary-syndrome">leading cause</a> of fertility issues in women, Dr. Charles emphasized that each woman’s body is different. “I think the biggest misconception is that pregnancy is not achievable and that nothing can be done to assist with PCOS,” she said. Working with a healthcare provider may help to determine additional <a href="https://www.nichd.nih.gov/health/topics/pcos/conditioninfo/treatments/infertility">causes of infertility</a> or potential lifestyle changes to address menstrual dysfunction.
Beyond guidance from providers, community support and self-acceptance are crucial for women with reproductive health issues. It’s helped Ken feel confident in her skin, in a body that she’s grateful to for keeping her alive during the pandemic. “I’m really happy just to be able to move my body and to be alive,” she said.
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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.

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How Black Women Are Putting PCOS on the Sidelines

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, <a href="https://www.cdc.gov/female-blood-disorders/about/heavy-menstrual-bleeding.html">menstrual bleeding that lasts</a> 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 <a href="https://www.ncbi.nlm.nih.gov/books/NBK279294/">10 out of 100 women experience heavy cycles</a>, 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. <a href="https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656">Endometriosis</a> 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 <a href="https://ihpi.umich.edu/news/uncovering-drivers-racial-disparities-uterine-fibroids-and-endometriosis">poorer clinical care</a> for the condition, are <a href="https://www.sciencedirect.com/science/article/abs/pii/S0002937822000448">less likely to be diagnosed</a>, and often have more medical problems post-surgery for their endometriosis.
Due to racial bias, <a href="https://pubmed.ncbi.nlm.nih.gov/31070440/">Black women’s pain</a> 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 <a href="https://www.jstor.org/stable/3768379?seq=1">historically shown to advocate less</a> for themselves in medical scenarios, self-advocacy has been shown to improve outcomes both for <a href="https://pmc.ncbi.nlm.nih.gov/articles/PMC4879045/#:~:text=Self%2Dadvocacy%20has%20been%20associated,distrust%3B%20discriminatory%20experiences%20with%20their">Black breast cancer patients</a> 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&#8217;t care about my education level. They didn&#8217;t care about my <a href="https://nationalpartnership.org/wp-content/uploads/black-womens-maternal-health.pdf">socioeconomic status</a>,” she recalled.
She remembered showing her hospital staff badge as a patient to prove she was truly in pain, and not seeking to <a href="https://www.sciencedirect.com/science/article/pii/S0376871623011316">misuse substances</a>. “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&#8217;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&#8217;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.

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Black Women are Powering Forward with Self-Advocacy in Reproductive Health

In 2019, Alyssa, a Kansas City native, was attending her freshman year of college in Washington, DC, when she needed her birth control shot administered. She went to her university’s busy hospital and waited to be seen. A nurse “looked at me, she looked at the shot, and she said, ‘You got it,’ and went on to call the next person to see her,” Alyssa, now 24, recalled. The thought of administering her own shot made her nervous because she didn’t know how to do it herself. She left the hospital without receiving adequate information or care. “That experience rattled me really bad,” she said. She scrambled for a place to receive her shot for months.
At every stage of the game, Black women deserve to have their reproductive choices supported with evidence-based information and care. But historically, factors including racism, age discrimination, stigma, and classism have prevented them from receiving adequate reproductive healthcare. The resulting barriers to care may cause and perpetuate the <a href="https://pmc.ncbi.nlm.nih.gov/articles/PMC7813444/">health disparities</a> that leave Black women at risk for reproductive health conditions, high maternal mortality rates, and other <a href="https://www.bu.edu/articles/2023/racism-sexism-and-the-crisis-of-black-womens-health/">poor health outcomes</a>. According to the CDC, Black women are <a href="https://www.cdc.gov/womens-health/features/maternal-mortality.html#:~:text=Black%20women%20are%20three%20times,structural%20racism%2C%20and%20implicit%20bias.">three times more likely</a> to die from pregnancy-related causes than their White counterparts.
Misconceptions about birth control contribute to these statistics. They may take the form of inadequate information about contraception, untruths about safety and side effects, or assumptions about sexual activity. Younger women may especially be susceptible to <a href="https://www.washingtonpost.com/health/2024/03/21/stopping-birth-control-misinformation/">misinformation about birth control</a> that spreads on social media. When young people receive incomplete information about their contraceptive options and reproductive rights, it can deter them from seeking contraception. They just give up. Some “may end up in situations that are dangerous for them or that they require even more resources to get out of,” including an unintended pregnancy, said Jamarah Amani, a licensed midwife, and the executive director of the Southern Birth Justice Network.
Studies show that <a href="https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2823647">most young people prefer</a> to learn about available birth control methods through a healthcare provider. They make informed decisions when they have sufficient knowledge. Jamarah believes silence around sex and reproductive health contributes to a knowledge gap among youth. “I think a lot of young people have misconceptions about what birth control is, what types there are, and at what stage they need it,” said Jamarah.
But young people need support when they do begin making reproductive decisions. The first time Chyna, 27, ever tried to get birth control, she was a 16-year-old seeking relief from her heavy periods. Although she went to the hospital with her mother, the doctor refused to give her a prescription. “He didn’t want to give me the pill or the implant, which I ended up getting from another provider,” she said.
The encounter left an imprint on her that has stuck 11 years later. “I’ll never forget his face when he said he wouldn’t do it for me,” said Chyna. “I probably will never forget how I felt.”
For women like Chyna, stigmas about sexual activity also play a role in the health disparities Black women face, whether these ideas come from their family, religious communities, providers, or society at large. Community biases against contraception can make the difference between women taking charge of their health or falling through the cracks. When Black women <a href="https://pmc.ncbi.nlm.nih.gov/articles/PMC8114454/">face judgment</a> from their providers for seeking birth control, it can become yet another obstacle to overcome.
Women may receive additional pressure from sexual partners who believe that using birth control is morally wrong. <a href="https://pmc.ncbi.nlm.nih.gov/articles/PMC9592682/">Reproductive coercion</a>, or interference with a person’s ability to make reproductive decisions, can look like birth control sabotage, pressure to get pregnant, or forcing or preventing pregnancy termination.
“I just think that a lot of women are a little scared to say what they want and really voice their opinions, out of fear of losing their spouse, or losing the respect of their spouse,” said Chyna. She has had two friends afraid to tell their partners they were using birth control.
Although birth control prevents pregnancy, many Black women, like Chyna and Alyssa, also use it in part to help manage acne, regulate their menstrual cycles, or ease endometriosis pain. These uses are all FDA-approved. But every woman deserves <a href="https://blackrj.org/wp-content/uploads/2020/04/6217-IOOV_ContraceptiveEquity.pdf">contraceptive equity</a> and reproductive freedom, no matter their reason for seeking birth control. They own their reasons.
Decoding misconceptions about birth control also means holding space for the toll that these gaps in healthy equity can take on Black women’s mental health, in addition to other conditions they may deal with. “Reproductive health care is about more than contraception. It is about empowering women to proactively address their own health and well-being needs, educating them about the physical and mental health experiences they may encounter during their reproductive years, and providing them with access to quality support, resources, and care,” said Dr. Kensa Gunter, a licensed psychologist, and director of NBA Mind Health.
Jamarah Amani added that sometimes her clients are struggling with mental health crises, or grief due to a pregnancy loss or termination. The Southern Birth Justice Network operates a midwife clinic in Miami, Florida, where they provide evidence-based information to empower young people to be playmakers in their reproductive health. The clinic also offers the services of mental health doulas and connects people to telehealth resources to address their well-being.
Decoding misconceptions about birth control is a team effort that calls for Black women to have open, intergenerational conversations with each other and their providers, about health and sexuality, at every stage of the reproductive cycle. “I know if we had more candid and mature dialogue about it, it would be something that wouldn’t be shamed or shunned,” said Alyssa.
Many Black women find reproductive health support from their peers, which has been <a href="https://msmagazine.com/2023/08/08/black-women-pregnancy-death-childbirth-peer-support-hospitals/">a long-proven tool</a> helping Black women to thrive. Alyssa compares notes about birth control with a diverse group of queer, trans, and femme friends in their conservative home state. Chyna encourages her squad to find a contraceptive method that fits their lives and their bodies because she knows what it’s done for her.
“If I was not on birth control, I probably would have had a child earlier than what I needed or what I could have planned for,” Chyna said. “And honestly, I&#8217;m very grateful for the access that I&#8217;ve been able to have.”
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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.

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Decoding Misconceptions about Birth Control

When Bijoux, 41, got married in 2009, she knew she wanted to enjoy wedded bliss for a while without adding baby joy to the mix. She did her research, talked to her OB/GYN, and decided that an intrauterine device (IUD) would best empower her to build the life she wanted and protect her from an unintended pregnancy. That’s when her roller coaster ride began.
As of 2019, <a href="https://www.cdc.gov/nchs/products/databriefs/db388.htm">over 65% of women</a> in the U.S. use a form of contraception to prevent pregnancy or treat various reproductive conditions, among other reasons. Black women are <a href="https://www.cdc.gov/nchs/products/databriefs/db388.htm">less likely to use contraception</a> and are at a <a href="https://pmc.ncbi.nlm.nih.gov/articles/PMC6436107/#:~:text=The%20majority%20(66%25)%20of,races%20and%20ethnicities%20(53%25).">higher risk for unplanned pregnancies</a>, making access to birth control crucial to the fight for women to own their reproductive health. But many health disparities prevent them from getting the care they need to decide if, when, and how to start a family.
“As both a woman of color and an obstetrician/gynecologist for over 20 years, I know too well the barriers that plague those who look like me when trying to access quality health care or exercise their reproductive and family planning rights,” said Dr. Ashanda Saint Jean, assistant professor of Obstetrics and Gynecology at New York Medical College. These barriers to access can include cost, lack of insurance or adequate coverage, unemployment or underemployment, and issues interacting with the medical system.
Unemployment changed Bijoux’s access to her birth control. “For a while, I didn&#8217;t have insurance before the Affordable Care Act, so I had a prescription for birth control that I would take up through my local health department,” she said. This meant she had to get an annual checkup at a department with doctors who she said were “not that good at treating you like a person.”
Historically, Black women have faced racial <a href="https://pmc.ncbi.nlm.nih.gov/articles/PMC8170721/">discrimination at the hands of reproductive healthcare providers</a>, leading to an ongoing mistrust of the doctors they depend on for their birth control prescriptions. Black women between the ages of 18-49 are <a href="https://www.pewresearch.org/science/2022/04/07/black-americans-views-of-and-engagement-with-science/">more likely to report</a> having a negative experience with their healthcare provider. And even getting to the doctor’s office to refill prescriptions can pose a hardship for those who lack transportation, childcare, or the ability to take time off work.
Bijoux had to pick up her birth control prescription from her local county health department “like clockwork” every month to make sure she was protected against an unintended pregnancy. When she found a job, however, she no longer qualified for free birth control through her local health department. “I think I did, actually, a few times, pay full price out-of-pocket,” while she was working, she said. Having her birth control when she needed it meant paying more than $200 for peace of mind. A 2024 survey reported that <a href="https://www.kff.org/report-section/contraceptive-experiences-coverage-and-preferences-findings-from-the-2024-kff-womens-health-survey-issue-brief/">1 in 5 women</a> had to discontinue using their birth control because they were uninsured. Changes in income, insurance coverage, and employment can instantly change women’s ability to get the method of birth control that works for them.
The Affordable Care Act was a game-changer for Bijoux and millions of women trying to control their reproductive lives. <a href="https://www.ncbi.nlm.nih.gov/books/NBK241401/">Starting in 2014</a>, the Affordable Care Act expanded optional Medicaid coverage to people whose income falls below 138% of the federal poverty level. Today, that coverage<a href="https://www.kff.org/status-of-state-medicaid-expansion-decisions/#:~:text=Coverage%20under%20the%20Medicaid%20expansion,%2C%20Virginia%20(1%2F1%2F"> can vary per state</a> and also depends on immigration status. In 2021, Medicaid covered <a href="https://www.cdc.gov/nchs/data/databriefs/db468.pdf">64% of all births to Black mothers</a>, underscoring its importance in improving health disparities that disproportionately affect Black women. Lower-income women who need birth control may fall into a “Medicaid coverage gap” if they reside in one of the 10 states that have yet to adopt the program’s expansion. But enrolling in Medicaid, maintaining coverage, and <a href="https://pmc.ncbi.nlm.nih.gov/articles/PMC6452575/">getting appointments</a> can be complex to navigate for those who rely on the program for healthcare.
Over-the-counter birth control could be an attractive option for women who are unable to meet their healthcare needs through the Affordable Care Act. There are also people and organizations everywhere dedicated to helping Black women and their families take charge of their health and well-being—including Bijoux herself.
At her managing position with a nonprofit in Arkansas, Bijoux helps to level the court for low-income families, providing them with resources for family planning in a state that has the <a href="https://www.cdc.gov/nchs/maternal-mortality/mmr-2018-2021-state-data.pdf">highest maternal mortality rate</a> in the nation. Her organization steps in to be part of their village. Using culturally sensitive, trauma-informed methods, she believes that increasing birth control access gives mothers “an opportunity to think about what they would like and what they can handle.”
As for Bijoux herself, birth control puts the ball in her court, so she can live her best life as a divorcée, plant mom, Pokémon enthusiast, and soul singer. “Using birth control gave me the time I needed to choose whether or not I wanted to even have children,” she said. And in the space to make that decision, she has found the freedom to build a life she loves.
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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.

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