During quarantine, I came to realise how much the feminist movement has excelled in taking advantage of the digital era we are living in. Education on feminism is only one click away and everyday from the comfort of our own homes, we are exposed to posts and articles breaking down gender stereotypes and taboos around sexual health on social media. While I’m very pleased about that, I have noticed that I hardly ever see articles on Polycystic Ovary Syndrome (PCOS) and I find that quite surprising given how common it is and how impactful it can be. As such, in a humble attempt to raise awareness on this condition, I would like to share my experience with it.
PCOS is a hormonal disorder so as you can guess, puberty was not exactly a bed of roses. I was deemed too tall and too “flat” for the longest time, bullied in the most refined ways throughout high school for having hair where a woman “is not supposed to have some” and on top of that, I was very anxious about my first period taking – literally – years to come. I finally got mine after I turned 16, unlike many other girls in my home country, France, who got their first period at 12-13 years on average. Not only that, but my periods were very irregular – ten months could pass by without any menstruation; they had become a sort of yearly or bi-yearly “surprise visit” from Mother Nature. I suspected something was wrong with me, but eventually resigned myself to blaming my Middle Eastern genes. It was not until the age of 18 that an echography at the gynaecologist finally made sense of everything: “Ok, I see. You have Polycystic Ovary Syndrome.”
All I remember thinking was, “Excuse me, poly-what? A syndrome?” It’s hard not to sound dramatic when this was the first time I had ever heard about this condition in my 18 years and in all honesty, it sounded pretty intimidating. After a bit of research, I found out that behind this quite scary name actually lies the most common hormonal disorder for women of childbearing age, affecting about 1 in every 10 women. There are 3.5 billion women in the world. I’ll leave the maths to you but that is a lot of women. To add to this, the prevalence of PCOS appears to vary across different ethnic groups. Results from a 2017 study conducted by researchers at UCL found that the lowest prevalence of PCOS was in Chinese women (average rate of 5.6%) then followed by Caucasian women (around 10%) and lastly Middle Eastern and Black women, with the average rate going up to 20-25% for these groups. Genetics may not be totally innocent, after all.
Now that we’ve taken a look at how widespread this disorder is, let’s talk through some of the symptoms. While nothing can replace a proper diagnosis by a gynaecologist, you probably have PCOS if you experience at least 2 of these 3 symptoms: irregular periods (infrequent, irregular, or prolonged menstrual cycles are the most common sign of PCOS); excess androgen (the male hormone that causes excess facial and body hair – ever so gracefully termed ‘hirsutism’ – and occasionally severe acne and male pattern baldness); and polycystic ovaries (meaning that the ovaries may be enlarged and contain follicles that surround the eggs, which could impede the ovaries from functioning normally).
However, there is more to the story and that is why searching the side effects of PCOS was not that smooth of a task. We have all been through one of those moments when you Google the symptoms of your cold and WebMD basically tells you that you’ve only got 24 hours left to live – well, PCOS was no exception. I learnt that it was frequently associated with a range of other conditions, namely Type-2 diabetes, anxiety, depression, and even certain forms of cancer. I even had the pleasure of finding out that research had not only not yet discovered what provoked the condition, but that it was incurable and one of the most common causes of infertility in women. Yikes.
But don’t get me wrong reader, I was not disheartened after being diagnosed and learning about all of this (okay, just a bit worried maybe). PCOS can be associated with multiple complications and its symptoms are already a pain in itself, but fortunately, those symptoms can be managed and the sooner it is diagnosed, the more able you are to do so. Indeed, early diagnosis and treatment may reduce the risk of long-term complications and medical interventions to achieve fertility have high success rates in young women; these treatments should be sought early if you are diagnosed with PCOS and would like to bear children one day. I have to also admit that it was a great relief to finally be able to put a name – however intimidating it was – on this curious mess.
While I may seem to be taking this lightly now, sprinkling sarcasm here and there, I must confess that it actually took me a few years to be able to do so and to accept my body for what it is. Living with PCOS is not simple and you will still often find me complaining about Mother Nature’s whims. In my day-to-day life, this basically means that I never exactly know when my period is going to come, I worry a lot about the hair on my body, I have no idea if one day I may develop some of the multiple complications associated with PCOS, and I ignore whether I’ll be able to have children later on. All in all, there is a lot of uncertainty and stress, especially given the very few answers from research that could potentially reassure young women with PCOS. For example, a few days before finishing this article, I visited my gynaecologist to have my checkup and took advantage of this occasion to ask her about new findings on the causes of PCOS and its links to other medical conditions, in this case, endometriosis. Her answer was inevitably the same: “We still don’t know” with an apologetic look. How frustrating.
I must also add that one of the trickiest parts of living with PCOS, in my opinion, is having to endure people’s unawareness about this condition, most notably from men. Clumsy comments on your physical appearance – generally made “as a joke”, just to “tease” – can affect your self-esteem, especially when you are well aware that you look a little different to what a woman is expected to look like, according to 21st century Western societal standards of beauty, and have no control over it. Until recently, I felt humiliated when such comments were made but now, my approach is to simply answer, “well, this is the life of a woman with Polycystic Ovary Syndrome”. The usual reaction speaks for itself: an embarrassed smile – because they have no clue as to what I’m talking about – and not daring to ask for clarification. Disappointing, to say the least.
While I am proud to finally be able to have this kind of reaction and not feel so ashamed anymore, I just wish people would ask. I have reached the point where I accept PCOS as part of who I am, however I am fully aware that every woman with this condition experiences it in her own way, with more or less prominent symptoms than myself, and each is on her own level of progression towards embracing her body as well as coping with all that PCOS entails, both biologically and socially. All I can say is that for most of us, it is a stressful and highly impactful condition – it is not surprising that numerous medical studies have frequently found PCOS to be associated with anxiety and depression disorders.
For all of these reasons, PCOS should be taken seriously and a genuine effort should be made to spread awareness. If you think you may have PCOS, please do not hesitate to talk about it with your GP or gynaecologist. If you are looking for support, or want to support research and awareness on this condition, there are charities specifically dedicated to the cause such as Verity UK and the PCOS Awareness Association.
As a final word, regardless of whether you have PCOS or not, the message of this article is about learning to embrace your femininity just as it is, no matter the amount of hair on your body, or how your skin looks like, or what your weight or body shape is, whether you can get pregnant or not and so on (yes, the usual body-positivity message, but it’s important to reinforce it). By doing so, we continuously and collectively redefine what it is to be a woman on our own terms. Who can teach society what it means to be a woman better than women themselves? Even the most feminist father or brother, even the most feminist of our male friends cannot truly realise how it feels to be a woman and especially how hard it can be, with the impossible standards and expectations of being an “acceptable” woman in this era. That is why it is so critical that we stand up for ourselves and raise awareness on conditions like PCOS by implanting and promoting a culture of consideration in society as a whole, and most importantly, by deciding ourselves what it means to be a woman.