I’m going to let you in on a little secret – I didn’t understand what Polycystic ovarian syndrome (PCOS) really is until very recently. ‘Very recently’ being 2018; five years after I was diagnosed with the hormonal disorder.
I was diagnosed with PCOS when I was 19. A hospital admission in the middle of my A2 exams discovered that I had a large ovarian cyst causing the pain and discomfort I had been experiencing for some time. Well-meaning people around me had supposed it was just gas or ovulation pains but I wasn’t convinced, so I pushed. Looking back, I can say that that experience was my first lesson in self-advocacy and ensuring I was heard as a Black woman when it came to my health. Scans later, it was confirmed that my ovaries were polycystic which means that they have small collections of fluid called follicles around them.
The first few years following my diagnosis weren’t as eventful as you would imagine. I was put on the pill to regulate my period and advised to maintain a healthy lifestyle and my weight at the time. I found making smoothies and going to the gym fun so luckily, that aspect of managing the disorder was a breeze. However, the hormones in the pill had a terrible effect on my skin. During puberty, I didn’t struggle with my skin past the few pimples here and there. In my early 20s, once I was put on the pill, my skin went haywire. I learnt about skincare and the connection between food, natural products and skin health during this time.
With some women, one of the symptoms of PCOS is that our bodies gain weight easily. That’s what happened to me. I had just spent 6 months working in New York and happily eating my way through the lovable whirlwind of a city. I had gained a lot of weight by the time I arrived in Lagos. You know the anxiety of coming back home when your body has changed, especially to a Nigerian family? Well, I know that feeling a little too well. I felt it even more before I moved back home to Lagos after my stay in New York. Although I was so happy to be home, I was uncomfortable in my body. The hurtful comments I received from Nigerians who have never heard of the concepts of (a) minding their business (b) tact or (c) questioning their fatphobia, made me even more insecure. I eventually did drop a bit of the weight, but this was my new body. It took me intentionally doing the work to accept my body and finding the fun in fashion to become more comfortable in my skin.
Over the years, I have come to learn that managing PCOS is about maintaining an intentional and healthy lifestyle. Within that, it’s understanding each phase of the disorder; observing symptoms and adjusting my lifestyle to improve them. One phase was the decision to go off the pill a few years ago, with the permission of my gynecologist. I did not have the chance to learn how PCOS affected my body when it wasn’t on medication and I wanted the chance to understand my body then.
Another phase was observing changes in my digestion and food intolerances over the years. Our gut health can be said to be the center of our overall health, which I believe, so I decided to try to change my lifestyle. Try being the keyword because I really enjoy food. I love it and I know it loves me right back; I can tell by the squishiness of my FUPA. I kept a food diary for weeks and noted down what made me feel unwell. I ended up cutting out certain foods – dairy and gluten were the main culprits. I really learnt what it meant for food to be our medicine; my mum and I started farming our own vegetables and herbs which encouraged me to incorporate plant-based foods into my diet. I became more active; I tried yoga for the first time and loved it, I started swimming again and going on long walks while listening to great podcasts. I took time to learn my body and my mind during this phase. There’s a connection to self that I developed which has stayed with me.
A particularly difficult phase during my management of PCOS has been dealing with irregular periods, which is a common symptom. After months of hoping for a period after irregularities for almost two years, I finally got my third one of 2020 in June. Unfortunately, the celebration was short-lived as I ended up bleeding for the whole month. Irregular periods don’t just show up as missed periods but also abnormalities in cycle lengths. The month-long period came with all the symptoms; horrible cramps, migraines that lasted days, nausea and fatigue. As you can imagine, it wasn’t fun. A few visits to my gynecologist and I was put back on the pill. We came to the agreement that regularised periods would give me a better quality of life.
I cried in her office. I cried on the phone with my sister in the waiting room. I had changed my lifestyle, and this was the reward? Back to square one? I was eating more intentionally and healthier, working out, taking supplements that aid hormonal balance, avoiding stress (as much as possible in Lagos) and I felt like I had still failed. I felt embarrassed. It felt as though my body was failing and fighting me at the same time. The first few months back on the pill were hell for my mental health. I was in a very low place, having thoughts that worried me. I was already in therapy before this change, so thankfully I had that professional support during the transition which was great. I leaned on my friends and family heavily. I needed them. Over time (a lot of it), things got better. Days got brighter. I was patient with myself and began feeling more like myself. People I loved were patient with me too. They taught me grace.
You’ve probably seen the stats or can Google them, so I won’t bother boring you with numbers, but quite a number of women manage PCOS. Many haven’t even been diagnosed yet. It’s pathetic that women deal with a hormonal and metabolic disorder that affects so many aspects of our health, yet there’s insufficient understanding and information on it. It’s not uncommon to hear doctors robotically tell women who suffer from PCOS to go on the pill, lose weight and come back when they want to have children. It almost seems as though the fact that not all women want to have children isn’t taken into consideration when dealing with PCOS sufferers. Such blanket treatment options can feel like putting band-aids on a bullet hole and it’s a damn shame.
If this was a health issue that affected men, many, myself included, are of the opinion that PCOS research would not be as underfunded as it is. Ricardo Azziz, chief officer of academic health and hospital affairs at the State University of New York, stated in an interview with SELF Magazine that “Most of the studies, most of the researchers, and most of the administrators tend to be [men] who are not necessarily interested in women’s health.” Patriarchy rears its ugly head yet again.
Sometimes I forget I have PCOS. It’s not a cloud of ill-health that I allow to hang over my life. There are periods when it’s exhausting, physically and mentally, and I allow myself to wallow, but only temporarily. I mean, a girl’s got shit to do. Pity drains me. Changes I’ve made for my health continue to become a way of life and that empowers me. I don’t always eat healthy, but I know that when I do, I feel energized and sexy. I know to listen to my body. I take breaks and say no when I need to rest – having PCOS and being an introvert are a match made in heaven.
Women’s diagnoses, symptoms, and experiences with PCOS vary widely. My journey managing PCOS has led me to really evaluate my body image and work on accepting my body and treating it gently. I’ve been able to have intimate conversations with women also managing PCOS; women who get it. If there’s anything I’ve learned from having conversations about our wellness as women, PCOS or not, is to remember that we share more similarities than differences. This thought makes it easier to go through life forming connections while spreading understanding and consideration like confetti.
Karina hosts Body Image Workshops and is invested in conversations on women’s wellness, in case you can’t tell by the article. When she’s not going on about periods & stretch marks on the internet, she actually uses her degrees (a unicorn) in what she calls moonlighting as an engineer at her 9-5.
She’s a mother to two adorable bunnies, Tofu & Goji, and a few plants she tries to keep alive. Some die, but it’s the thought that counts.