Group tackles burden of misinformation, shame around PCOS

By Ebunoluwa Sessou

For nine years, she waited. She watched friends cradle their babies. She endured questions from relatives, pity from neighbours, and cruel whispers behind her back. “It must be her fault,” they said. Her husband’s family called her barren. She began to withdraw. Then came the depression. Then the suicidal thoughts once, twice, three times.

This was the story of Adekeye Waslat, but her story is not uncommon. Waslat is one of the over 2,500 women in Kauthar Opeyemi Lawal’s online community, united by a common thread: Polycystic Ovary Syndrome (PCOS). They are young, vibrant, and intelligent, but behind their smiles are stories of heartbreak, rejection, and battles with their own bodies.

Speaking with Vanguard, the convener of ‘Beyond the Symptoms’ conference, Lawal told Vanguard that her counseling experience birthed the idea behind ‘Beyond the Symptoms’, saying that there are too many women who are suffering emotionally, physically, and mentally because they do not know what PCOS is or how to manage it. And for those who do, they are often met with judgment and silence.

Silent struggle

According to Lawal, “PCOS is a hormonal disorder that affects 1 in 10 women of reproductive age with symptoms including irregular periods, excessive acne, weight gain, and infertility, adding that the symptoms are only scratching the surface behind the stigmatisation involved..

“Quietly, women are battling suicidal thoughts, facing divorce, struggling with body image, and depression. These are the real wounds, and they are invisible.

“Waslat has been married for nearly a decade with no children. She had tried everything. Her husband’s family blamed her. She had acne all over her face and refused to go out. She didn’t feel like a woman anymore. She attempted suicide three times before someone referred her to us.

“The Beyond the Symptoms Conference 1.0 was born out of stories like hers, stories of pain, isolation, and desperation. We do not want women to wait until marriage or infertility sets in before discovering they have PCOS. If we educate young girls early, we can manage the symptoms before they spiral.”

Early awareness

For Dr. Femi Omololu, Medical Director of Lagos Island Maternity Hospital, who represented the Lagos State Commissioner for Health, education is critical.

“I have seen unmarried women cry over infertility without even understanding what infertility means,” he explained. “Infertility is not a woman’s burden alone. It’s a couple’s issue. And it requires patience, proper diagnosis, and accurate information.”

“Even in the best-case scenarios for healthy men and women, there is only a 20 percent chance of conception per cycle. We need to demystify these issues and stop the blame game.”

One of the PCOS survivors, Seyi Amao, founder of PCOS Conquerors, reminded attendees that the journey is not one to walk alone.

“When I was diagnosed, I thought my life was over. But I found community. I found answers. I found healing.”

Her organization supports women navigating PCOS through counseling, group therapy, and education. “We help them take back control, starting with knowledge, followed by lifestyle changes. PCOS is not a curse. It is something you can conquer.”

Healing Through Food and Support

A registered dietitian and founder of Khairo Diet Clinic, Mrs. Olajumoke Osunsanya advised that good diets and nutritious food are necessary in addressing PCOS.

“When you have PCOS, food is not just food. It is either healing you or harming you,” she said. “Processed foods, sugary snacks, skipping meals, these things can make your hormones go wild. But when you start eating for your hormones, everything changes. Your skin clears, your weight stabilizes, and even your periods become regular.

“Google cannot solve PCOS. “Only a professional can help you create a personalized meal plan based on your body, work, and life. One woman’s meal is another one’s poison”, she said.

“Many men do not even know what it is,” Lawal says. “So when their wives gain weight or struggle to conceive, they assume it is their fault. That ignorance is dangerous. We need men at the table. We need them to understand, support, and advocate.

“There is no shame in this diagnosis,” she adds. “No woman should feel less because of her hormones.”

As the conference wrapped up, women embraced, some teary-eyed, others smiling for the first time in a long while. The energy in the room was heavy but healing.

For Lawal, this is only the beginning: “I want this movement to reach every school, market, church, and mosque. “So that no woman wakes up one day, married, and finds out for the first time that she has PCOS.”

“The hope is that, with more awareness, compassion, and early intervention, women will not have to wait nine years in shame or hide behind layers of makeup to cover hormonal acne. They will walk into clinics early, armed with knowledge, confident in their bodies, and surrounded by support. Because beyond the symptoms lies a woman deserving of health, love, and dignity”, she said.

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