My walk through Polycystic Ovary Syndrome

Imagine a painful period. Not like “Oh, I’ll sleep it off and hopefully I can go to school/college/university/work in the morning,” but more like “Will I even wake up to see the morning?”

I’m 23 years old and this has been my reality for almost a decade now. In the months I didn’t get my period, I would actually be relieved and not tell anyone because I thought it was easier to live without a Red Wedding taking place in my uterus.

There’s the crippling nausea that won’t let you decide if you should stand in front of the sink for a minute or two hours, because you know as soon as you reach the bed, your body will want you to throw up again.

You cannot keep your back straight, all the while you bleed your guts out. You cannot stand but also cannot sit or curl up in a ball. Painkillers are not a concept for people with this disorder. The pain is going to phase out in its own sweet time: 17 hours straight is the longest I've counted in my misery.

I was a late bloomer, so by the time I got my first period, everyone in my all-girls school had already passed the stage of obsessing over their period. The sports instructors wouldn’t give you a break; instead, they’d bully you for not being able to bear the pain of female existence. In my fixation on being a part of the basketball team, I could never miss a trial or team practice, no matter how hard my body rejected the idea of moving.

So my unnatural agony when I passed out with pain in the school bathroom was not taken seriously, because I must be “looking for attention”. This I would understand later in life, but back then, I just tried to mask my most painful days with a constipated smile, as best as I could.

My body could go up to two months without shedding out its dissolved eggs and the lack of reproductive health education we are given about our own bodies never let me be alarmed about the situation.

The only exposure we had about periods growing up were the women in white pants, gallivanting in sanitary napkin advertisements and they seemed like the happiest women ever, so I was reassured that all of it can’t be so bad, right? I’ll just wear my white pants after two months on the first day of my period and it will all be settled.

The idea of getting “cramps” and ignoring them is a very common attribute in our households because most women suffer from them, so the ones who cannot bear them are generally considered “too dramatic”. My threshold of pain wasn’t low — as it turned out, my cramps were much more painful because of an irregular cycle.

Up to 90% of adolescents have reported menstrual pain, while 15% have severe pain. Explaining dysmenorrhoea, Dr Nusrat Shah, practising at the Civil Hospital Karachi's gynaecology department, said primary dysmenorrhoea is defined as pain and discomfort during menstruation which occurs during regular ovulatory cycles, while secondary dysmenorrhoea is painful menses which involves an organic cause, for instance the presence of fibroid tumours or cysts.

“The abdominal pain may radiate to lower back and thighs. It can be associated with gastrointestinal and neurological symptoms, for instance nausea and headache. The pain caused by contraction of muscles lasts for eight to 72 hours,” she says, adding that a doctor must be consulted if the pain continues for longer.

A debilitating sense of self

Since PCOS is caused by an imbalance in your hormones (chemical messengers) in your brain and your ovaries, it can be a cause of depression. Studies find that women with PCOS are far more likely to be diagnosed with anxiety and depression compared to women without PCOS.

When you are constantly invalidated on your pain and it’s taken lightly or just labelled as female hysteria, you actually start doubting yourself. And that’s where self-esteem issues draw in from.

Some of the symptoms include hair fall, weight gain and hirsutism — excessive hair growth on the face and other parts of the body. Which, in a society as ours, is one of the worst things that can happen to a woman.

The excess of testosterone may make your facial hair more prominent and the idea of waxing or shaving it off is another ordeal of its own, because facial hair makes you masculine and obviously no one in a world obsessed with unnatural beauty standards would want that.

In 2017, when I was 21 years old and got my first full-time job, it came with health insurance and this development in my life alone defines the importance of workplaces providing healthcare facilities for their employees.

By now, it had been long enough that I had been ignoring my pain, because I had been so conditioned to labelling it as ‘normal’. But obviously slight inflammation after having generously fried food wasn’t. So, I decided to go to a general physician, who referred me to an endocrinologist because the symptoms seemed to indicate a possible thyroid disorder.

Growing up in a middle class family, you’re always counting down earnings to the last day of the month and sometimes, unknowingly, we tend to ignore the importance of yearly check ups that might be able to indicate health problems before they become a medical emergency.

Needless to say, despite very active parents, I was never taken for a routine examination, even after my period pain crisis, because painkillers or paracetamol are the solution to every medical condition in a desi household.

Also, because the cost of consultations and blood tests and ultrasounds is still very expensive and not accessible to all socio-economic backgrounds, it’s easier to just ignore it until it becomes a mammoth that hinders your day-to-day functionality.

After some 11 blood tests and walking into work with bandages on both arms, my endocrinologist ruled out the possibility of a thyroid disorder and finally called it Polycystic Ovary Syndrome (PCOS) for the first time.

She is a kind-hearted soul who was always wary of using the term, considering the stigma that our society has around it. I am still often told to keep hush-hush about it because no one should know that I’m perhaps an “incomplete” woman if I cannot reproduce.

In a brightly-lit doctor’s room, she sat me down and broke it to me like it was the worst news of my life, that I possibly might not be able to conceive. But for me, that was the last of my worries.

I just wanted to be sure if the pain and the weight that I had suddenly put on could be managed. Which were only going to get tougher from today onwards — and I was not warned.

After meeting the dietician, what seemed like a slight lifestyle change translated into a massive outrage at home because of what I could and could not eat in my day to day life.

PCOS, in some cases, makes the body vulnerable to Type 2 diabetes; even more so for those with a family history of it. My father was diagnosed some 12 years ago, so that naturally made my body much more prone.

Anything to have to do with carbs had to go. You change the pita bread to bran bread, the white atta to chakki atta, flour pasta to wholewheat pasta and so on. It makes very little difference but once you start making small efforts to nourish your body, it does reward you back.

But when you live in a desi household where PCOS has not hit anyone before, or has gone undiagnosed, it’s a very difficult task to explain why you cannot eat broiler chicken or why deep-fried foods make you nauseous.

What you always get for an answer is "Itna over kiun horahi ho?"

These countless belittling phrases don’t end. The arrangement of words always indicates that I have some control over my condition — which I don’t.

You’re asking a person whose idea of a cheat day — not from gym, but from PCOS — is having fries and chicken wings to be grateful about the fact that “at least you get your period, so many women don’t.” That’s how our culture diminishes our anguish.

Even workplaces have one paid leave per month, which others might use for recreational purposes, but I just spend tucked in my misery. From carrying a backpack to school, to carrying assignments in university and now a laptop to work, no one around me has ever tried to understand the agony that PCOS puts you through.

And you’ve definitely hit the jackpot if you’re also susceptible to endometriosis, which my dysmenorrhea proved me to be.

I have only found comfort through some Facebook groups for women, where we get to echo in each other’s experiences of years of being misinterpreted.

Illustrations by Namerah Khan