Same Diagnosis, Three Different Stories: Does "PCOS" Need a New Name?

Olushola Ajani
Aug 18
3 min read

Ada hasn’t had a period in over six months. She wakes up each morning unsure whether today will bring energy or tiredness.

Her doctor says it’s Polycystic Ovary Syndrome (PCOS), but her ovarian scan is completely clear.

Bola is afraid to step on the scale. In less than a year, her weight has doubled, her face has painful pimples, and she feels tired no matter how much she sleeps.

The ultrasound shows nothing unusual, yet her hormonal profile shows imbalance.

Mimi? She’s the only one with actual cysts (sac-like structures within the body that can be filled with fluid, air or other material) on her ovaries.

But between the three, her symptoms are not as intense.

Same diagnosis. Three completely different realities. Only one with cysts.

So why does the name focus on something many of us don’t even have?

The Name is a Mismatch

When you hear Polycystic Ovary Syndrome, what do you imagine? Tiny cysts covering the ovaries, right?

But:

Not all women with PCOS have cysts.
Some have them at one point and lose them later.
Others never have them at all, yet still live with the hormonal, metabolic, and emotional impact of the condition.

By focusing on one possible feature, the name hides the full picture of what PCOS really is:

Irregular or absent periods
Excess facial or body hair
Hair thinning on the scalp
Weight gain that’s hard to lose
Insulin resistance
Fertility challenges
Mood swings, anxiety, and depression

It’s a whole-body condition. But you wouldn’t know that from the name.

The Cost of a Misleading Name

Here in Nigeria, that mismatch is harmful.

It delays diagnosis.

A young woman goes to the clinic complaining of irregular cycles and fatigue. Her scan is clear, so the doctor rules out PCOS. Years later, she finally gets a diagnosis, but precious time has been lost.

It fuels misunderstanding.

Family members may think, "If you don’t have cysts, then what’s the problem?"

Friends may shrug it off, not realizing how deeply it affects your health.

It makes awareness harder.

Campaigns end up focusing on cysts instead of the complex hormonal and metabolic reality.

Why Your Voice Matters Now

Around the world, there’s a growing conversation: Should PCOS be renamed? Should the name reflect the hormonal and metabolic issues at its core, instead of just one symptom?

In a 2023 global survey of 7,708 participants, the majority supported changing the name to better reflect its broad health effects.

And now, the organizations leading this global initiative have reached out to us as PCOS conquerors to give our own input, not just as patients, but as African women living this reality in our own context.

This survey is about more than a name. It’s about: