The recent renaming of Polycystic Ovary Syndrome (PCOS) to Polycystic Ovary Metabolic Syndrome (PMOS) marks a shift in how the condition is understood. For many people living with it, the new name better reflects its hormonal and metabolic nature, rather than focusing primarily on ovaries and fertility.

In this article, we spoke to 10 Nigerian women living with the condition about what the name change means to them and whether they believe it will lead to greater awareness, diagnosis, and care

1. “I Would Be More Excited If There Were More Awareness” — Mercy*, 30 

I’m not on social media like that, so I found out about the name change while I was on a call with my friend, who is a doctor. When she told me about it, I honestly didn’t feel any type of way. Yes, I’m glad for the name change, but I think I would be more excited if there were more awareness of the condition. 

I got properly diagnosed five years ago, and I have had to deal with constantly educating people on what it meant. I also had to endure being constantly invalidated by the health professionals because they couldn’t simply wrap their minds around it, even though it is their job to do so. 

The name change is great. I have friends with PMOS who don’t have cysts, so I’m genuinely happy for them, but I would like to see more awareness being shed on the condition. 

2. “I’m Excited About it Because I Don’t Have Cysts” — Etim*, 28

I work in media, so I actually found out about the name change when my managing editor sent me a link to an article talking about it. I can’t lie, I’m excited about it because I don’t have cysts. Most of my symptoms stem from the hormonal and metabolic effects of the condition, and I appreciate the fact that this name change might show that PMOS isn’t just about fertility, like most male doctors in this country keep saying, so they can trivialise your struggles. 

It affects not just the reproductive systems but also other parts of the body. In my case, that included insulin resistance and excess testosterone levels, and I hope that all the doctors who tried to gaslight me into thinking otherwise are having an inner reflection moment, but that’s if they’re even aware of the name change. We live in Nigeria, after all. 

3. “I Am Glad the Conversation Will Now Shift From Just Fertility ” — Banke*, 35

I found out about the name change while I was doomscrolling on Instagram one day, and to be honest, I’m just blank about it. I don’t know if that’s because I had to go through different medical professionals before I finally found a gyno that actually listens to me, or if it’s because the whole fertility conversation surrounding the condition has never moved me, because of my decision to never bring a child into this world. 

However, I am glad that the conversation will now shift from just fertility and reproduction, and we can start discussing other areas of our health that PMOS has affected. 

4. “I Almost Gave Up on Not Getting Diagnosed” — Mary*, 25 

I was on Twitter when I read about the name change. At first, I thought they were lying, but I googled and found out it was real. I remember calling my friend to talk about it, and I burst into tears. The number of times I’ve been misdiagnosed by doctors, simply because I didn’t have cysts, almost made me give up on getting diagnosed. 

This condition has severely affected my physical and mental health, and yet, it was when I was visiting my family in an entirely different country that I was able to get a diagnosis from a kind gyno who made me feel validated in a way no one back home had made me feel. I can’t fully describe how happy I am with the name change, because it means that people with this condition can now get properly diagnosed instead of being carelessly dismissed, like I was.

5. “Because I Didn’t Have Cysts, Hardly Anyone Paid Attention” — Kiki*, 28

I got the information about the name change on a group chat with other women who also have PMOS, and I remember thinking ‘finally’. When I got diagnosed two years ago, it was only because I finally had cysts. I should have been diagnosed years before that, because I was already having symptoms that were directly linked to PMOS, but because I didn’t have cysts, hardly anyone paid attention to me. 

They told me it wasn’t a big issue, and I’m sure several health professionals probably still detest me because of how I made them uncomfortable after they made the entire conversation about cysts. The name change really made me emotional, because what if I never got cysts? Everyone would have been comfortable misdiagnosing me because of that? 

6. “For Years, it Felt Like I Was Crazy” — Anita*, 38

No one is happier than I am over this name change. I found out about it when my gyno texted me because she was happy that more research would be done on the condition. I still can’t stop thinking about the relief that washed over me when I read more about the name change, because for years, it felt like I was crazy. 

I’ve never had polycystic ovaries, but my insulin resistance is severe in a way that is quite concerning. So, before I met my current gyno, health professionals loved to pass me around because they didn’t really know what to do with me, since I didn’t have the textbook symptoms that they were used to. This is why I’m so giddy about the name change: more research will be done, and people can know more and be more aware. 

7. “I Wish Our Doctors Were Better Informed” — Daniella*, 24

Honestly, I am happy the name change is getting the right attention,even though my doctor was not aware of the news, and I had to be the one to inform her about something she should know. 

I think that’s why I’m 50-50 about it all, because yes, more attention is given to the other symptoms of the condition, but when will funding start going into treatments and research? Research on the female body barely exists, and it is getting tiring. I wish our bodies were given more attention, and I wish our doctors were better informed. I shouldn’t have to be the one telling my doctor. She should know. 

8. “They Would Only Look Into My Matter if I Lost Weight” — Binta*, 42

I got the news about the name change from my husband, who is aware of my diagnosis, and really, I can’t express how happy I am about this. Even though I’d been struggling with my symptoms since I was a young girl, I didn’t get my official diagnosis until my early 30s and even then, I was still invalidated by health professionals. 

Everyone kept blaming my weight, and kept telling me they would only look into my matter when I finally lost the weight. I thank God for my husband, who found a good endocrinologist who actually listened to me and let me know all about insulin resistance and how it is connected to the condition. She made me feel seen, and it is such a blessing that the name change acknowledges that it’s not only about fertility or reproduction. PMOS symptoms are more than that, and I’m just really happy the world is finally waking up. 

9. “There’s a Possibility Women with PMOS Might Still Get Invalidated” — Basiroh*, 25

I only found out the name about two weeks ago because I’ve been on a social media detox. When I saw the announcement from my friend, who sent it to me because she is aware of my condition, I was really glad, but at the same time, it made me wonder whether Nigerian healthcare professionals will be up to date on it. 

It took time for some of them to get used to the previous name and understand it. Who is to say that they’re not going to have a hard time wrapping their heads around this one? Most of them are not even being paid well for the work they’re doing, so there is a huge possibility that women whose symptoms align with PMOS might still get invalidated. I’m hoping that I might be wrong, and women whose symptoms are broader get the treatment they deserve. 

10. “For Years, I Lived My Life Without a Diagnosis” — Rachel*, 23

The day I saw the news on Instagram, I was in class, and I got sent out because of my excited yell. For years, I kept telling doctors that something was wrong with my body. I was convinced that I had PCOS, and because I didn’t have cysts, they told me I was thinking too much and that I shouldn’t worry. So for years, I lived my life without a diagnosis. I was even starting to think that maybe they were right, and I was reading too much into it, but then the news came out, and it turns out that I was very much right. The doctors just didn’t care much. 

It was this news that finally convinced me to reach out to a gyno a friend recommended. I’ve not met her because I’m currently at school in another state, but she’s aware of the name change, and she believes that I can get diagnosed. I am really just happy that I might get my diagnosis after being gaslit for a long time. 

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