2020 was the worst year of my life, and no, it had nothing to do with the pandemic. In fact, the terrible part didn’t hit me until towards the end of the year, when things had started opening up a bit—at least in Dubai, they were. Even at the start of the pandemic when everyone was forced to retreat indoors, I actually absolutely loved it. I loved not having to leave my apartment for anything and as an introvert, I never really missed seeing people. Don’t get me wrong, I’m not recluse or anything; seeing people would have been nice from time to time, but I was very okay with the idea of my personal space being just for me.

Then October came and everything quickly went downhill. The #ENDSARS protests against police brutality started in Nigeria. I was studying in Dubai, so I couldn’t be a part of the movement physically, but I tried my best to be an active participant online. I shared news about protests, I watched and read all the horrific videos and stories about the police brutality and with every retweet and story post, my heart only grew heavier and heavier with this feeling of helplessness.

At the same time, I had been bleeding more heavily than I ever had since September 30. I remember the exact date because my period finally came after a 3-month drought the day I checked out of the hotel where I had my birthday staycation. The bleeding came with the biggest clots. I got the 28-pad Kotex pack for extra heavy flow, and I ran through it in days. I had to change my sanitary pads every 2-3 hours, because the blood was leaving my body like water flowing from a tap and there were such heavy blood clots that sometimes, I felt like I was expelling whole organs from my body. I stained everything! I spent so much money on pads. It was horrible.

All that blood loss didn’t really start taking a toll on my body till about 2 weeks into the period, though. It was in the middle of October I started feeling extremely weak and fatigued after the slightest activity. Just having my bath or walking around my studio apartment would cause my heart to race like I had run a marathon. I spent almost all of every day in bed, because I simply didn’t have the energy to do otherwise. I would only get up to get my food order from the door, change my pad and tidy up in the bathroom.

The one time I had to leave my place to get something done at school, I almost fainted on the way to the bus stop (which was just 5 minutes away) and then again on the way back home.

Suffice to say, my mental health was in the gutter and there was no way I was focusing on my studies. I was juggling between emotional trauma and poor physical health.

At this point, you’re probably wondering if I had sought any medical help? Well, I hadn’t. A friend of mine had gone through something similar in the past and she told me it passed after a month. The clinic had just told her she had hormonal imbalance and it didn’t repeat itself. I thought that would be my case too, so I could wait it out.

I figured I had anaemia at that point, so I googled iron-rich foods and fruits and tried to stock up on those. I also bought iron supplements from Amazon. It didn’t help that I feared my health insurance wouldn’t be able to do anything and I was almost broke. I knew the pandemic had made finances tight back home, so I didn’t want to add to the troubles with medical bills. I would wait it out.

But, there came a point where I couldn’t wait anymore. I had been bleeding for over 3 weeks and the blood was not slowing down. I really couldn’t do anything without feeling like fainting and I lived alone, so the thought of collapsing and no one finding out terrified me. It was time to take a chance on my poor insurance. I told a friend of mine and she drove me to the only clinic my insurance covered in the area. They ran some blood tests and the doctor prescribed Primolut-N tablets to help slow the bleeding. I was shocked and thrilled when the bleeding stopped a couple of days later. You mean I could have ended all my suffering a long time ago?

But that wasn’t the end. One evening, I was woken up by a call from the same friend who took me to the clinic. Apparently, the clinic had failed to reach me, so they called her afterwards (she was my emergency contact). The doctor advised that I should be rushed to a hospital immediately to get a blood transfusion, because my blood test results came out and my haemoglobin level was dangerously low; the normal baseline haemoglobin level was 12 and mine was 6.3! When my friend told me, I burst into laughter. How was it possible that I had half the blood a human being was supposed to have in their body?! It was unbelievable!

My friend got to me as quickly as she should and took me to a private hospital where we thought I would get good care. We got to the ER where we saw that there were 3 levels of emergency: Green, Yellow and Red. My case was classified as a Yellow which meant I could wait to be attended to and (I would later learn) also meant that my case wasn’t emergent enough to be covered by insurance.

After I was examined by a female gynaecologist and reprimanded for not having come earlier, I was told to wait on a bed on the floor. My blood was drawn for another test and while I was waiting for the results, another (male) doctor told me I didn’t have to do a transfusion. According to him, women who had gotten blood transfusions sometimes had issues when they were pregnant because there could be some sort of incompatibility—I don’t remember the exact words he said. He advised that I got iron injections instead, which were of course more expensive and outside of insurance coverage. I met with the gynaecologist again and she reiterated that what she advised was a blood transfusion. Either way, I was sent back home and told to come back for a consultation with a specialist at the start of the week—it was a Thursday night and in Dubai, the work week ended on Thursday and started on Sunday.

I left the hospital still very weak, and with even less blood than I had gone in with. It was ridiculous, but I didn’t have the strength to be angry. My friend was the one who had the energy to fight for me. The next day, we went to the clinic again and my initial doctor was shocked that the hospital hadn’t admitted me, considering how dire my situation was. She said based on how anaemic I was, she didn’t understand how I was moving around and sitting across from her looking (close to) normal. She recommended a government women and children’s hospital where she believed they would treat me, and gave me the words to use to plead my case with the insurance company.

When my friend and I got to the women and children’s hospital, I was treated with such a sense of urgency that I almost cried. The doctor was enraged when we narrated how I was treated at the private hospital the previous night. She said the excuse the ER doctor gave for recommending iron injections instead was absolute hogwash; sure, the incompatibility thing could happen, but the risk was too insignificant to consider. I badly needed blood and I was going to get it by all means, according to her. I was admitted and transfused with 4 pints of blood over about 3 days. When they were done, it felt like I finally had my body back. I could stand for longer than a couple minutes, I could walk, I could dance to music without feeling tired.

I did an ultrasound scan and that’s when they saw that I had Polycystic Ovarian Syndrome (PCOS). It was what caused the period irregularity and the abnormal uterine bleeding. My condition finally had a name. If it had a name, it meant it could be treated and this would not happen again, or so I thought.

I was prescribed birth control pills, which I was to take for 28 days. At the end of the 28 days, I had a “period”—what I would later learn was just withdrawal bleeding—and then my period didn’t come back again. In December, I travelled back home to Nigeria and I met with a doctor who properly explained PCOS to me for the first time. But get this: the doctor said there wasn’t really anything they could do to treat it. He told me they could only really start treating me with drugs that would boost my fertility when I was ready to have kids. I was to go home and continue with my “normal” life. I had a condition, but apparently, living with it didn’t matter enough. The condition only really had consequence for childbearing.

He also said I could continue taking the birth control pills, so I did religiously for almost a year. Towards the end of 2021 though, I made the decision to stop taking them after I read articles online about how it was a lazy prescription that caused more problems in the long run. Also, the accompanying weight gain had done some damage to my self-esteem.

I started doing more research online, reading stories from “Cysters” about their PCOS journeys and what had helped them so far, since I didn’t have any medical counsel to point me in the right direction. I started taking Vitex supplements, which I eventually stopped, because I wasn’t sure it did anything for me. My periods were still irregular as ever, I still got bloated after eating carbs, etc. I also recently learnt that my anxiety and mood swings, which are worse than they have ever been, are probably tied to the hormonal imbalance from PCOS.

Late last year, I met with a doctor who advised we do regular check-ups to monitor my hormone and blood sugar levels (PCOS is one of the leading causes of diabetes for women). But still, what we were doing whenever I had my PCOS “episodes” was damage control, just trying our checklist of options to stop the bleeding and treat the resultant anaemia. For everything else in between, I’ve been pretty much on my own, (unsuccessfully) trying to regulate my diet and reduce my sugar intake, navigating the mess that is my mental health and so on.

PCOS is like a ghost that haunts me at will. A lot of the time, I forget it is there, just lurking in the shadows, but once in a while, the ghost rears its head and leaves me with a crippling fear of the future, both near and distant. I wonder when my next period will come and how long it will last. I wonder where it’s going to embarrass me. At work? At church? At a restaurant? At a tailor’s shop? Anywhere really. PCOS has been fond of making me its punchline. I wonder how terrible pregnancy or even trying to conceive will be for me, even though it’s a few years away.

It’s ironic; how knowing that my condition had a name brought me some comfort and validation, but also opened the door to a world of fears of things I had never considered before. Something recently happened that reawakened the hope of healing in me, but I’m still sort of waiting for the other shoe to drop. Sometimes, faith is the harder part.

Nonetheless, I still find comfort in the fact that there are millions of women all over the world sharing this struggle. I had never heard of PCOS before I was diagnosed, but now I know of so many women’s stories. It breaks my heart to know that there are probably lots of women who haven’t been properly diagnosed, going through the suffering alone, and I think a huge part of that is due to the hush culture surrounding periods and women’s reproductive health in general. I love that women are speaking up more and more and I am proud to be one of such women.