‘I knew I wasn’t fine’: Black women are fighting to be believed about PMOS symptoms
TheGrio...
After years of symptoms and “normal” test results, Black women living with PMOS, formerly known as PCOS, say being heard by doctors can be a battle of its own.
Breana Turner, PhD, had been experiencing four years of symptoms before finally receiving a Polyendocrine metabolic ovarian syndrome (PMOS) diagnosis from her doctor in March 2025. Five years of test results that yielded “normal” results. Five years of inexplicable hair loss. Five years of large weight gain in short periods of time. Five years of exhaustion that no amount of rest or melatonin could solve.
“I like to joke that I’ve had gynecological issues before I’ve gotten my first kiss,” Turner told theGrio in a phone interview reflecting on her experience having ovarian cysts in middle school, which forced her to become more in tune with her body at a young age. “But when I started my PhD program in 2021. I started noticing little strange things happening with my body.”
From needing naps to get through the day, getting diagnosed with Premenstrual Dysphoric Disorder (PMDD), to weight gain, to noticing hair loss along her hairline, which she initially attributed to stress and a high-tension hairstyle, Turner says it took the culmination of all these symptoms for her to seek help and not blame herself for these changes in her body.
“I had to kind of have a reckoning with myself that this was not a vanity issue of me gaining weight or looking a little thicker. It was ‘Something is wrong. I should not be gaining 30 pounds within two to three months,’” she recalled addressing her concerns to doctors early on. “And for about two years, I would say I was pretty brushed off because my numbers looked fine, but I knew I wasn’t fine.”
It was not until March 2025 that she received a formal PMOS diagnosis, a diagnosis she says felt like vindication for the years of symptoms she had experienced.
“It felt like an explanation for all the symptoms that I didn’t understand—why I was experiencing them for years. I had to sit with myself and also realize that, kind of dipping into a little bit about being a strong Black woman or being a superwoman, is that I don’t have to feel tired and worn down all the time,” she shared. “There was a period of time where I was really wrestling with the fact that I was doing something wrong as far as a lifestyle, when in reality it was signals from my body that something else was wrong and it was out of my control at the time.”
That instinct to push through is exactly what Dr. Regina Davis Moss, president and CEO of In Our Own Voice: National Black Women’s Reproductive Justice Agenda, wants Black women to unlearn, especially as September marks PMOS Awareness Month.
“We really have to stop normalizing Black women’s pain, and we also have to stop accepting it on our side, too,” Dr. Davis Moss told theGrio. “Because there are generations of Black women and girls growing up who believe that they have to just cope with debilitating periods, severe pelvic pain, or these dramatic changes in their bodies.”
She continued: “We enter a healthcare system with that well-documented history of racial inequity and stereotypes. And the main one being that Black women are strong. We can endure pain. We can endure suffering.”
Dr. Davis Moss says the recent renaming of polycystic ovary syndrome (PCOS) to PMOS is an important shift, as the new name reflects a range of symptoms and health effects that were long overlooked. However, the new name is only the start.
“The name may have changed, but the larger challenge still remains, which is just making sure that there’s research in this area, as well as equitable care for Black women and girls living with this condition,” she said.
Turner, a translational scientist whose research uses Black Feminist Theory and the Superwoman Schema to examine how Black women understand, experience, and navigate their own health and wellness, defines the “Burden of Black Womanhood” as culturally rooted principles many Black women embody, including suppressing emotions, presenting strength, and being selfless, which can lead to poor health outcomes, principles she saw in her own upbringing.
“My mom really instilled in me the importance of being able to do for myself,” she recalled. “She knew how the world treats Black women. At the same time, sometimes I cannot be the only person that’s helping myself. Sometimes I actually have to ask another person. I actually have to go to the doctor’s office. But because of how I was raised, those cultural norms—it was very hard for me to grapple with. I need help that’s coming from more than just me.”
Unfortunately, a large step in seeking that help is learning how to advocate for yourself, a necessary but sometimes exhausting step, especially for women who think they may have PMOS, a chronic illness that is widely misdiagnosed.
“Not everybody is going to fit the textbook definition of a chronic condition,” Turner said, explaining how her documented timeline of persistent symptoms despite following previous medical guidance led to her diagnosis. “Especially in this medical system where women were underinvested and underinvited to research, period, and then Black women continuously go underdiagnosed, misdiagnosed, or diagnoses take forever. There are many things that may lead to a PMOS diagnosis that might be devoid of a blood test or just a number alone. You have to have evidence to support yourself.”
“[Doctors] are experts, but I’m an expert in my own body,” she emphasized. A sentiment Dr. Davis Moss echoed when reflecting on PMOS and reproductive health overall:
“We know our bodies best. When we say listen to Black women, trust Black women, that is what we’re talking about…Patients should feel empowered to ask their doctors whatever they want, and to expect clear answers.”
Just as Turner provides women with the tools to unapologetically advocate for themselves in medical appointments through BecomingHealthyHer, Dr. Regina Davis Moss shared the questions she recommends patients, who suspect having PMOS, ask their doctor:
- Could PMOS explain the symptoms I’m experiencing?
- What kinds of tests or screenings should we consider?
- What are my other treatment options? What are all my treatment options?
- How is this going to affect my health beyond this moment? Does this affect my fertility? Does this affect my menstrual cycle?
- Should we be monitoring my blood sugar, my blood pressure, cholesterol, and all the other metabolic health indicators that can have an impact?
- What treatment options make sense based on my symptoms and based on my goals?
“[Reproductive justice] is about whether you can walk into your doctor’s office and have your pain believed, whether you can get that accurate diagnosis before two to three years of your life have passed,” she concluded.