Polycystic Ovarian Syndrome (PCOS) is a hormonal, metabolic and reproductive disorder that affects women and is the leading cause of infertility. PCOS is also marked by a lot of other symptoms and conditions: depression, obesity, type 2 diabetes, acne, excess facial and body hair, etc.
PCOS affects 1 in 10 women but still a lot of women have no idea that they are living with this condition.
In this article, 6 Nigerian women share their experiences living with PCOS:
Zii, 22:
When Were You First Diagnosed With PCOS?
2018. When I was 19 years old.
What Were The Symptoms That Led You To Believe Something Was Wrong?
My period stopped for like six months. Till date it’s still irregular.
Upon Learning That You Have Been Living With PCOS How Did You Feel? How Do You Feel Currently About Having This Condition?
I always knew something was wrong, right from junior class because I used to get my period for a week and a half, and use like 7 pads a day.
In what way(s) has PCOS affected your life?
I started menstrauting when I was in JSS3 which was kind of late for me and then I used to be so heavy, I would get my period for like two weeks straight and each day I would use a whole pack of pad. On one particular day, I got stained in class. I sat down for twenty minutes and the whole chair was just stained. My class boys started laughing at me, they started calling me names like ‘Mrs. Zobo’ (sigh) You know this kind of thing when everyone will just be laughing at you. My class girls were giving me looks of irritation. Funny enough, it was a boy who eventually gave me his blazer to go and clean up in the bathroom. You know, that experience stuck. It really affected me. Till date whenever I am seeing my period I don’t go out, I just stay at home throughout that week. Maybe if I’m in the hostel, I’ll stay in for the whole week.
Another thing with PCOS is the horrible metabolism. I struggle with my weight, some months I am a size 10 and then other months I can be size 16. There was even a time I hit a size 18 and it was the worst. I work out, I eat healthy but my metabolism is too slow.
Let’s not talk about the hormonal imbalance and how it affects my mental health. From 2018 to 2020, I was at my lowest due to body dysmorphia and seeing how other people look, especially on the internet. For a whole year I didn’t know what I looked like. I didn’t take pictures, I avoided mirrors and even broke mine, I would also wear big clothes. It wasn’t even helping that my meds for depression made me gain so much weight but when I stopped, I lost a lot of weight. People will make unsolicited comments on how much weight I lost, wondering if I was sick. I was not sick oh, it was just my body doing up and down with me. I also battle with body hair and comments like “girls with hair on their neck are usually wicked” doesn’t help at all.
See oh, PCOS is wicked but me I’m wickeder than it.
Are there ways you cope with PCOS?
I exercise and it makes me feel so much better.
Chidinma, 29:
When Were You First Diagnosed With PCOS?
I was first diagnosed in 2007.
What Were The Symptoms That Led You To Believe Something Was Wrong?
My first period was in September 2003. The pain which I now recognize as cramps was unbearable for me. I didn’t know what it was. The diarrhea, the headache and body aches, the blurred vision, the excessive bloating and nausea. It was awful. My breasts grew and hurt like crazy. I was just eleven so it was confusing because all the others who had periods didn’t have many of these symptoms.
The actual flow which stained everything stainable, lasted for 9 days. Add additional 5 days of spotting to the mix.
Upon Learning That You Have Been Living With PCOS How Did You Feel? How Do You Feel Currently About Having This Condition?
I felt like, FINALLY, a diagnosis. I assumed there would be a solution to my problem.
My gynecologist suggested I be placed on oral birth control which would help to regulate the flow (which could come for 3 weeks non stop or come back after a 5 to 7 days interval, then disappear for two months) but ensure I wouldn’t ovulate for the period I was medicating.
He opined that I was to take it nonstop for a period of 5 years because he assumed in error that after 5 to 6 years I would be ready for childbearing (Lol) I was 15 at that time o.
My parents refused.
Now though, I feel depleted. Worse than I felt when I first got diagnosed. There’s not enough information on this condition PERHAPS because it’s women centered. There’s no cure.
In What Way(s) Has PCOS Affected Your Life?
The two weeks that my period usually lasts on the average, the first week is near unbearable. I limit going out to just places that I can’t afford not to go to. Then if I’m to spend more than 30 to 45 minutes from the time, I pad myself up with either adult diapers and multiple sanitary towels (using 2 or 3 pads at a time, changing every half hour and confining myself to dark clothing) I seek to identify a convenience where I can change. If there’s no convenience I can use, I just bring out the extra clothes I’ve packed then tie around my waist to serve as extra layers because the stains no be here. My cramps are so bad that any exams or graded tasks that fall on that period is almost always a swift failure because I just can’t do many things. In university, I couldn’t even make it to the exam hall so I had to be deferred to take them at a later date.
This is usually dicey because to go out is hard enough because I am legally blind, then navigating to a convenience if available, with people touching you in the guise of helping you or grabbing your cane to guide you, is usually nightmarish. I have had my period for 4 weeks at a stretch, no breaks. Super heavy flows o!
I’m almost always in a state of anxiety because I do not know whether or not to expect my period. Sometimes, I have severe cramps for 5 to 7 days, swollen body, constant aches and so on, but no flow afterwards. My cycle is as irregular as they come. Then I’m anxious about the amount of laundry I have to do, the chunk of money that goes to purchasing sanitary products and the likes.
The hirsutism no longer bothers me, I just make room for regular waxing, then I’m forced to wear clothes with longer arm and leg length in between. For my facial hair, I have to shave, epilate, use a tweezer, pick, EVERYDAY!
Once upon a time, I was having unprotected sex nonstop for a year. The moment I get up, the sperm trickles down my thighs, like there is a barrier preventing it from going in.
If I decide to have a child(ren), I’m very likely going to try any artificial insemination procedure that I decide on because I can’t really afford to stress over whether or not I would be able to conceive unaided.
Are There Ways You Cope With PCOS?
In 2016, I was placed on tablets I was to take thrice daily for a period of 4 months. I couldn’t get past the first week because I was 5kg heavier. In 2019, I was placed on hormones to help shrink the cysts which were sizeable.
I deal with PCOS like I deal with most things. I prefer to focus on getting through it whilst trying not to excessively self harm in an attempt to ease the pain.
Vanessa, 26:
When Were You First Diagnosed With PCOS?
This year, April 2021.
What Were The Symptoms That Led You To Believe Something Was Wrong?
I hadn’t seen my period for quite a bit (I got it in September and didn’t get it again until February) During that time I moved from Nigeria to UK and I was really stressed, so I just thought I wasn’t getting my period because I was stressed out. When my period finally came in February, I saw it from the beginning of February to the end of March (it was a lot of blood) that was 2 months straight. I just knew something was wrong because that had never happened before. Immediately, I contacted my GP to find out what was wrong.
Upon Learning That You Have Been Living With PCOS How Did You Feel? How Do You Feel Currently About Having This Condition?
When I contacted my GP, she said it could be PCOS and she began to list out the symptoms: excess hair, acne and so on, but I told her that the only symptom I had was irregular periods and I that I had been bleeding for 2 months straight. I just wanted to know when it would stop. I ran some tests and I discovered it was PCOS.
Finding out, I was relieved. It suddenly made sense why I was constantly missing periods over the years. Apart from that and the fact I gain weight easily, I had no other symptoms. It was a huge relief to finally understand my body.
In what way(s) has PCOS affected your life?
In the last 5 years I have learnt to live a bit healthier, but this is prior to my PCOS diagnosis but after that happened this year, it made me a lot more intentional about health and about the things I am consuming. I go to the gym to make sure my weight stays at a healthy state.
I’m almost 27 and my diagnosis has made me think a lot more about kids because I do want to have them. I understand now that it might not be as easy for me as it is for everyone else, so there’s a lot of anxiety around having kids and fertility which I didn’t think about before.
Like I said, I don’t have a lot of external symptoms like excess hair, diabetes and so on, but what I do realize is that I have a lot of fatigue. I get so tired easily. PCOS fatigue is a thing.
Are There Ways You Deal With PCOS?
I guess I do a lot of research about the condition, from reddit forums to online health advisory platforms. That helps me process it rather than think about it as a really big deal. Knowing how to deal with it makes it a lot easier and a lot less daunting. I also make sure I eat properly and work out. Finding other cysters too helps, and conversations like this, because before I was diagnosed I had no idea about other women who had the same condition.
Ewa, 21:
When Were You First Diagnosed With PCOS?
In February, 2019.
What Were The Symptoms That Led You To Believe Something Was Wrong?
I had missed my period in January which was very weird. I mean, I never really had a regular cycle, it was always fluctuating. It never followed the normal 25-30 days but no matter how late I was, I always got my period. So when I missed my period that month, I went to the hospital and the gynecologist asked me to do some tests.
Upon Learning That You Have Been Living With PCOS How Did You Feel? How Do You Feel Currently About Having This Condition?
Funny enough, I already had a feeling I had PCOS. I noticed that for a female I was unnecessarily hairy and I believed it was because my dad is hairy and I inherited it from him. So a year before my diagnosis I was googling why I was hairy, that’s when I found out about PCOS and how it causes irregular periods (my cycle was always irregular), by the way never google your symptoms, but in my case I ended up having it.
When I got my diagnosis, I was shattered and heartbroken. PCOS is one of the leading causes of infertility and that’s where my mind went to first. I was already thinking about the possibility of not being able to have my own kids. I also wondered if a lot of women with infertility issues knew their PCOS status. I felt really devastated and horrible about it. My boyfriend at the time encouraged me not to focus on it, so I learnt to face the reality that I have PCOS, because it’s incurable. I tell myself it doesn’t make me any different, less than a woman and doesn’t mean I wouldn’t have children. Sometimes I forget that I even have it and other times, its all I think about.
In What Way(s) has PCOS Affected your life?
My period comes when it feels like coming. I haven’t seen mine in about 2 or 3 months and I am actually unbothered, because who likes getting their period? (Lol) You know there’s a way your body feels when you’re about to have your period; I always have that feeling each time of the month but there are times my period still wouldn’t come. I still however get PMS: cramps, abdominal pain, mood swings and I just be like “if you don’t want to come, don’t come, why are you now frustrating me?”. There are some days my mood just switches from a 100 to 0. I try to be a chill person but it has been a huge trigger for me.
It made my mood swings worse and at a point, I was extremely down and I had to seek therapy. Sometimes I have to miss school because emotionally I feel like a deadbeat. It’s like a heavy burden.
Are There Way(s) You Deal With PCOS?
Regardless of how unbothered I seem, I still worry but I don’t let it overwhelm me. I get scared of the possibility of having to try IVF when I get to that bridge, but I try to remind myself of God’s word; I am a child of God and regardless of anything, God’s got me and that’s always my consolation because physically speaking, I don’t think there’s anything on earth that can console me.
Toni, 22:
When Were You First Diagnosed With PCOS?
Beginning of February, 2020.
What Were The Symptoms That Led You To Believe Something Was Wrong?
I have had the symptoms almost since I started having periods, but then I didn’t exactly think anything was wrong. Most times my period will run for a month, 2 or 3 months and then maybe like the next 3 months it won’t come but I never really thought it was something bigger than just having an irregular cycle. I was in 300 level when I was first diagnosed with PCOS. I confided in my friend about my irregular periods, energy drains and anemia from loss of blood due to long periods of bleeding. He advised me to go for some tests to tackle the problem of irregular periods, that’s when I found out I had PCOS.
Back when I was a teenager, I remember hopping from hospitals to hospitals trying to find a cure. At first they diagnosed me with amenorrhea and the doctor prescribed oral contraceptives for me but at some point I stopped using it and my irregular periods came back. Ever since then, I have just been carrying on with my irregular periods. I was also losing a lot of blood and becoming thinner. Eventually when I entered university, I started gaining weight which was odd because I wasn’t really eating, not to talk of the stress school was putting me through. So I went from being very thin to not even fitting into my clothes at all.
Upon Learning That You Have Been Living With PCOS How Did You Feel? How Do You Feel Currently About Having This Condition?
Upon learning I had PCOS, I felt numb because the first thing the doctor told me was that I have PCOS and I have to marry and give birth as soon as possible. That’s not the first thing you want to hear for someone who is still in school and still trying to figure life out. When I left the hospital, I think I shed a tear or two because I felt broken in a way and more insecure than I already felt about myself.
Currently, I feel like I am not giving too much of a damn about the situation because I have tried everything I can to regulate my periods but at this point I have given up, so I am just trying to live my best life and not let this condition define me.
In What Way(s) has PCOS Affected your life?
I usually bleed for one month or two months. Sometimes, longer. Then There is the energy drain; I’ll just be doing something and then suddenly, I’ll feel faint. It’s overwhelming because I just get so weak and unable to do anything. There’s also the money factor; The amount of money I spend on pads because I am bleeding for a month plus, You get so used to wearing pads all the time that you even become used to it. There was a time when I just came off my period and it was a surprising feeling because I hadn’t felt like that it months.
I started doing research on PCOS and found out that diet also affects your body as someone with the condition. Less gluten, less sugar and less milk in your diet means less cysts and lesser symptoms of PCOS. I started incorporating that into my diet but then the funny thing is, everything we eat in Nigeria either has gluten, sugar or dairy, so there is really nothing for me to eat especially as a student who is undergoing so much academic stress. Imagine having to take out something as basic as rice out of your diet. It’s overwhelming because now I have lesser food options, especially in Nigeria. At some point I gave up on that because it became tiring.
Having PCOS also made me even more insecure. After my diagnosis, I discovered I had more body hair than usual and I was growing chest and chin hair. It made me feel more insecure and manly.
Are There Way(s) You Deal With PCOS?
I shove it to one side and try to live my life. I also try to be more body positive. I try not to think that PCOS will be what will kill me because people with it are prone to diabetes, heart diseases and certain types of cancers. Sharing it with my friends also helped. I normalized speaking about it with them and it made me more comfortable with my condition. Time also helps to process a PCOS diagnosis. You’ll be in denial at first but you’ll learn to accept and live with it.
Uju, 20:
When Were You First Diagnosed With PCOS?
March, 2021.
What Were The Symptoms That Led You To Believe Something Was Wrong?
I never paid attention to it honestly. I mean, my whole life I’ve had very inconsistent periods so I thought it was the same for other girls until I had a conversation with my friend one day and casually mentioned to her the happiness I feel experiencing my periods twice a year (Lol) She then told me it wasn’t normal and that I needed to see a doctor about it. I was very hesitant to see a doctor because dealing with periods is very stressful and I didn’t want to start experiencing it for 12 months in a year.
Upon Learning That You Have Been Living With PCOS How Did You Feel? How Do You Feel Currently About Having This Condition?
I was surprised, knowing now that I have PCOS makes me feel uncomfortable but I do feel better now that I’ve seen a doctor and it’s being treated.
In What Way(s) has PCOS Affected your life?
The one way PCOS has affected my life is acne, OMG. Acne is the worst! I’ve struggled with it my whole life, it hasn’t been easy honestly. I was always sad about it, it will make you very depressed. I tried everything there is to treat mine. I copied everyone’s skin care routine and still no results. It got to a point were I completely gave up on my acne, I didn’t care about it anymore. It was during my doctor’s appointment that I discovered from her that my acne is hormonal and was due to PCOS.
Are There Way(s) You Deal With PCOS?
I currently take birth control to treat mine. It regulates my periods and also helps reduce my acne. Since I got on the pill, my acne has reduced a lot. I also use a lot of skin care products recommended to me by my doctor.
*This article has been condensed and edited for clarity
Very informative
Thanks for publishing thus article 👏👏👏👏.
Great article thanks for publishing.
How do we then understand our body metabolism?
Knowing that there are people who go through the same thing as me makes me feel better. Thank you