Polycystic Ovary Syndrome is an illness that exclusively affects 1 in every 10 women. It can occur as young as 11 years of age. To be diagnosed, you must meet two out of three symptoms in the Rotterdam criteria. Beginning with, irregular or absent ovulation, elevated levels of androgens in your hormone profile or enlarged ovaries containing cysts more recently, known as ovary follicles.
This syndrome also brings with it a host of other difficulties that women have to live with including risk of developing diabetes, reduced sex drive, problems with fertility, obesity, excess hair growth all over the body, especially the face, skin discolouration, excess acne, male pattern baldness, feeling unusually fatigued, extreme mood swings which have the potential to turn into full blown depression and anxiety.
One of the important things to remember about PCOS is that it is grossly misdiagnosed. As girls while we’re growing up, our obesity is seen as arising out of our junk food habits, our mood swings are explained as us being another of our adolescent tantrums or worse, being a woman, acne is just another part of puberty that everyone goes through and the most important differentiator, our irregular periods are just something of a pubertal hiccup expected to normalise as we grow. Therefore, a lot of women end up suffering longer than they should.
So what is this hormonal imbalance? PCOS usually happens due to high levels of luteinizing hormone which disrupts ovulation, high levels of androgens causing acne, excess hair, male pattern baldness and more as well as insulin resistance putting women at risk for diabetes. However, the most devastating are the emotional repercussions of this hormonal imbalance.
After a research on 17,000 women it was found that women with PCOS are more likely to develop mental health concerns and especially struggle with depression, anxiety, bipolar and eating disorders. -Neuroscience and Mental Health Research Institute at Cardiff University
As a part of writing this article we approached a few women around us managing this syndrome and we spoke to them about how this affected their life. The stories they shared; tells us why we need to pay more attention.
“I remember the first time that I took my symptoms seriously was because of being constantly bullied at school about my weight. People around me would just find some way to comment on my weight. I even started skipping meals to get thin at first. Everyday I used to go back home feeling disgusted at how I look. So I googled how to lose weight and that’s where I found out about PCOS. I think I would’ve probably starved myself if I hadn’t found a name for this.”-Woman 1
“It was so hard for me because when I began menstruating it could happen whenever, a month later, maybe three months later and so many times I would be unprepared. I would feel defective, like I was less of a girl because my friends around me had perfect cycles. It was hell.” -Woman 2
“I remember there’s always a time when girls start getting conscious about body hair, we start discovering parlours, getting waxed, and even laser sittings. I remember I grew so conscious of myself when I started growing hair on my chin, upper lips and even on the sides. I had to go to the parlour so many times. It was painful and embarrassing. From the parlour lady to my classmates, everyone would make fun of me.” -Woman 3
“For me, getting to know about PCOS came very late. In fact, I was convinced I’m depressed and decided to see a therapist. So she told me to first get my hormone profile and it is from there we discovered I might have PCOS.” -Woman 4
Amongst all these stories, we would like to share one particular story that captured the grave mental health repercussions of living with PCOS of a 29 year old woman, from Mumbai.
I was reminded of the time when I began getting conscious of myself. My hair started falling when I was in XIIth standard and they would just fall and fall. I did everything, from oiling to seeing a trichologist to putting eggs, curd and even onions on my hair but they did not stop. They still haven’t. And I went from school to college to now at my job; everyone commenting on what I could do for my hair. I couldn’t go to the parlour for a haircut without the guy telling me to take better care of my hair. It became absurd to the point that random relatives came up to my mom, worrying who will marry me with that kind of hair and so much acne.
There soon came a point, wherein even my male friends started commenting how their hair were more than mine and for the girl in me, that became so humiliating that I actually stopped meeting people. I stopped going for haircuts. I became so self conscious that I would get nervous as soon as someone approached me to talk to them. My self confidence dipped, I began obsessing over all and any hair products to make my hair presentable. I started looking at the mirror less and less, I couldn’t even see my face without feeling shame.
This went on for a long time. As I grew, my menstruation cycle continued to be irregular so I began carrying a sanitary pad all the time. I kept a change of pants whenever I could. And, whichever month I did get my period, it would be so painful that I would have tears by the end of my first day itself. Gradually, I began having such extreme mood swings, with or without my periods. Anger outbursts and irritability became so common for me that it became difficult to have a proper conversation with people. I would cry unexpectedly, be angry the next day and completely fine the third. I finally decided to go visit my gynaecologist and I’m so glad I did because that’s when I found out that I have PCOS.
She presented me with all the information I needed to understand the syndrome, referred me to an endocrinologist as well. I also got an ultrasound to confirm the cysts/follicles. We had a long chat about infertility and medications. Even though she was telling me there is no cure and it would be something I would have to manage but all I was hearing was, there’s a name for this, there’s an actual reason. I’m not defective or less of a woman. I’m not ugly. I’m not some emotionally crazed person who can’t handle herself. The depressive feelings have a reason behind them, something I can work on.
I just have PCOS and I can learn to manage it.
And it is that day and today, I have to work every day on my PCOS. I'm aware I have to watch what I eat and exercise regularly because I'm at risk for diabetes and also have to watch out for all the excess androgens. I maintain a healthy sleep and mood hygiene and visit my therapist twice a month to manage the depressive feelings and low confidence. But as a result of these changes, I definitely feel healthier and most of all, happier.
I took control of my condition and so can you.
Title inspired by Alisa Vitti.
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