“In the early days, a lot of doctors told me “congratulations” on my newborn baby. I didn’t have sex recently, and I had facial hair. So where did the baby then come from?”
This is the question Zizi*, an anonymous PCOS warrior, and many other women like her ask as they fight a condition that many doctors fail to recognise and society struggles to understand.
Polycystic Ovary Syndrome (PCOS), a complex hormonal disorder, affects the ovaries of a woman of childbearing age and causes infertility. But the realities of this disease are by far more than just conception issues. But don’t take it from me. Let Zizi and Seyi Amao, the founder of PCOS Warriors (a virtual community), tell you what they experience from their lens.
A consistent pattern of misdiagnosis from doctors
When Zizi was 16, she discovered that her periods were infrequent, as well as the growth of facial hairs—and doctors didn’t help her understand her body any better. “I kept on hospital hopping,” she recounts, describing years of misdiagnoses, including congratulations for non-existent pregnancies and birth control.
It took expensive tests and false diagnoses from three hospitals before a doctor finally realised that her condition could be due to a hormonal imbalance. “I also realised that I kept on gaining weight no matter what I did. I kept on having brain fog and I didn’t have the best relationship with my parents. I had very few friends, and they didn’t live close by, which made things worse,” she added.
Zizi’s experience mirrors that of many African women, highlighting a critical gap in PCOS awareness across the continent, especially in Nigeria. In 2019, the Medical Council revealed that it was investigating 120 Nigerian doctors for different counts of professional misconduct regarding misdiagnosis of PCOS and other illnesses, while half of that number are awaiting trial. Even though not all misdiagnoses lead to loss of lives or grievous injuries, some Nigerians still die of common ailments due to doctors’ mistakes in prescribing drugs and wrongful treatment. The journey to diagnosis is often long and fraught with challenges, with many women facing years of medical appointments and misdiagnoses before finding answers.
Seyi Amao, founder of PCOS Conquerors Nigeria, explains, “Very few doctors are actually passionate about it…you have to advocate for your health personally.” This knowledge gap often leads to delayed diagnoses and inadequate treatment, compounding the physical and emotional toll on women. Her journey to diagnosis was equally challenging.
“I didn’t get maybe officially diagnosed until when I was I think 27, but I had seen symptoms as early as I’ll say, the earliest was 11,” she shares. “I had normal periods, they were painful but they would start and finish in five days. So the first time I ever missed my period was when I was 18, and I think I missed it for a month. I also had serious acne issues which I battled with for years before I got my diagnosis.”
A decline in mental health
PCOS often casts a long shadow over mental health, a fact often overlooked in discussions about the syndrome. “I realised how PCOS increased chances of mental illness. Before I had never been clinically depressed, but now I was, as well as ADHD,” Zizi shares.
She also emphasises its impact on daily life can be profound. “I am a law student but only attended 2 months’ of my first-year classes. It affected my grades like mad. I wasn’t able to focus too. I could be reading a book, and I would be stuck on a page for 3 hours,” Zizi explains, highlighting the cognitive challenges that often accompany PCOS.
This underscores the need for a holistic approach to PCOS management, one that addresses both physical and mental health. Though estimates vary, between 8 and 13% of reproductive-age women have PCOS, and many experience adverse mental health outcomes. Recent studies have revealed that people with PCOS are four to seven times more likely to have depression and anxiety, three to six times more likely to have an eating disorder, and 8.47 times more likely to attempt suicide. In a survey conducted by the non-profit PCOS Challenge: The National Polycystic Ovary Syndrome Association, 62.15% of the 900 respondents reported high to severe mental health impacts caused by the condition.
What does it mean to be a PCOS warrior in Africa?
In a society where a woman’s worth is often tied to her fertility, PCOS can be particularly devastating. Amao recounts the heartbreaking story of a woman on the PCOS Warrior group who her husband abandoned due to PCOS-related fertility issues. “He kept blaming her and accusing her of possibly having an abortion in her school days as the reason why she wasn’t conceiving. She had to live with her parents for over a year before her relatives interceded for her and her husband took her back, she explains.
The woman’s story took a hopeful turn when she conceived after following dietary advice from the PCOS Conquerors group. However, according to Seyi, she told the group that she doesn’t love her husband in the same vein. Not like before. This woman’s story highlights the deep-rooted cultural pressures many African women face.
Another member of the PCOS Conquerors community shared her struggle with family acceptance. Having “hair like a man” has been seen as “disgraceful”, and they hardly involve her in family events or gatherings. “They can’t tell anybody in their extended family about it because it’s just a shame for them,” Amao reveals.
These experiences highlight the urgent need for education and empathy, not just for patients but for their partners, families, and broader communities. The stigma surrounding PCOS can lead to social isolation, depression, and, in some cases, the breakdown of marriages and families.
Navigating lifestyle changes
While diet and exercise play crucial roles in managing PCOS, implementing these changes can be challenging in African contexts. Certain foods or exercise routines may be less accessible or culturally unfamiliar, adding another layer of complexity to PCOS management.
Amao shares her own experience with dietary changes:
“The first thing I realised was that beef wasn’t necessarily good for me. So I cut out beef. I focus more on getting lean meat.”
She also emphasises the importance of reading food labels and being aware of hidden sugars and additives.
Exercise, too, requires a tailored approach. “Avoiding high intensity, even if I do high intensity, has to be like a short, short one,” Amao explains. “Switching to low impact workouts, swimming. Walking is actually very great.”
Seyi Amao slimmed down from a size 16 to a size 12 six months after she started certain exercise programs, via Seyi Amao
These lifestyle changes can be particularly challenging in urban African settings, where processed foods are increasingly common and safe spaces for exercise may be limited. However, women like Zizi are finding creative solutions, adapting traditional foods and incorporating movement into their daily routines. She shares that she uses a lot of spices like pepper, ginger, and scent leaves in her diet, as they help with hormonal balance. “I also make sure to reduce the sugary foods I ingest, as they bloat me up tremendously. Even if I have a pizza or ice cream, I am off to the gym or exercising the next day to get the fat out,” she shares.
Community as a coping mechanism
Despite the challenges, support groups like PCOS Conquerors Nigeria are emerging as beacons of hope. “Right now, we’re around 700 women in the group,” Amao shares proudly. These communities offer not just emotional support but practical advice on managing symptoms and navigating healthcare systems.
As awareness grows, so too do efforts to provide better support and resources for women with PCOS. Amao shares an exciting development:
“We recently partnered with Pharma Run and we’ve come up with a kit that once you get diagnosed, you will hear, ‘here’s your starter pack. Here’s what you need to go on. Here’s the guide, and obviously, working with your doctor, you can then manage your symptoms.”
Such innovations are crucial in a context where access to specialised healthcare can be limited. By providing women with the tools and information they need to manage their condition, these initiatives are empowering women to take control of their health.
“Men need to have more empathy”
Addressing PCOS effectively requires involvement from all sectors of society, including men and workplaces. Amao emphasises the need for greater understanding and support from male partners and colleagues.
“It just takes someone with high empathy to understand that it’s quite traumatising to just kind of go through all of that and to not have a spouse that doesn’t necessarily understand or even people in your life that don’t get that it’s not your fault. Men need to have more empathy,” she explains.
In the workplace, accommodations for women with PCOS can make a significant difference. “Sometimes it’s like having to work in some conditions that are really not the best,” Amao notes. “Sometimes, you just need that break so that you can get yourself back and you can deliver on the work.”
A future where no woman struggles in silence with PCOS
Looking to the future, Amao dreams of a continent where PCOS is better understood and managed. Her vision includes certified PCOS-friendly healthcare institutions and locally-relevant resources for women with PCOS.
“I want to focus on the metabolic issues that arise with PCOS and all the other aspects of it,” she shares. “Like I said, we don’t necessarily address hair loss because maybe people are not even aware it’s even associated with that in a way, but then there’s heart problems. There’s heart disease; there’s diabetes.”
Amao also hopes to expand the reach of PCOS support networks across Africa. “It’s something I’m hoping to be able to get ambassadors and just different places that can just work and create that safe haven for women like her to talk,” she explains.
As awareness grows and more women share their stories, the landscape for PCOS management in Africa is slowly but surely changing. From grassroots support groups to partnerships with healthcare providers, the momentum is building for a more PCOS-aware Africa.
As awareness grows and medical understanding evolves, these courageous women are not just managing their symptoms—they’re changing the conversation. In their struggles, they echo a resounding message—that no woman should suffer in silence. Every voice raised against PCOS stigmatisation brings us one step closer to a world where this condition no longer dictates a woman’s story but becomes a chapter in her journey of strength and self-discovery.
