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My walk through Polycystic Ovary Syndrome

I’m 23 years old and this has been my reality for almost a decade now.
Updated 10 Dec, 2019


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.

The symptoms of dysmenorrhoea, or pain and discomfort during menstruation.
The symptoms of dysmenorrhoea, or pain and discomfort during menstruation.

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 symptoms of PCOS.
The symptoms of PCOS.

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

Comments

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anil sahu Nov 06, 2019 10:21am
nicely written mam. every guy should read to understand misery of our girls
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Sameera Shafiq Nov 06, 2019 10:31am
This is very infomrmative for all our sisters out there.
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Zafi Gill Nov 06, 2019 10:39am
Hey Manal, I read your article and I cannot tell you how much I appreciate for spelling it out. I understand your pain, believe me. As someone suffering from PCOS as well, I know the struggle is endless. What you said about using your monthly leave and people judging you for 'something every woman goes through' ... hit me right in the feels!
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Rubia Nov 06, 2019 10:41am
I was diagnosed with pcos at the age of 16. A very brutal doctor bluntly told me that I will never be able to shed the 100 kgs I had on me and will never be able to have babies. I am 30 now. Lost 35 kgs with a proper healthy diet and exercise regime over the course of some years. I am currently 6 months pregnant with my first child. I had no trouble conceiving. I consulted a very kind endocrinologist who guided me for 4 years for pcos. I was also advised by my mother never to tell anyone about my pcos, which I feel is a huge mistake. Pcos is nothing to be ashamed of, but yes, due to society's stigma and pressure I never was able to tell my in laws or husband about my pcos nor my gynaecologist, as my mother in law is with me at my pregnancy appointments. I know it is important for my gynae to know about my pcos history but I still think 'kya sochain gi meri saas ke mujhe pcos hai'. I wish girls, if they have pcos, would be more confident and never doubt themselves and learn to live a more healthy life.
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shaukath Rehman Nov 06, 2019 11:37am
Beautiful article about women challenges. my heart and my soul feel the pain of PCOS syndrome for all the women who are facing this issue. my suggestion to all the women / ladies / girls stay Happy Happy Happy first. Secondly Exercise moderately every Day. Thirdly eat Fruits & Veggies which grow on trees not on soil. Pray for each other don't look for sympathy change things by your self with determination. Bringing Additional life on earth is secondary, your primary focus is to take care of your self. I wish you al very good luck and happy life....
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nisa Nov 06, 2019 11:54am
wondering if you have considered Creon
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HIK Nov 06, 2019 12:00pm
Sweetheart, hang in there. Healthier lifestyle also helps to reduce depression. Firmly express yourself and your pain openly to your family. PCOS has unfortunately become common in our society especially due to our unhealthy lifestyles. Diet, vitamins and so many other treatments help in conceiving. I pray for your good health.
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max Nov 06, 2019 12:03pm
fantastic write up. we all can learn from writers experience and knowledge
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Sana Nov 06, 2019 12:25pm
Dear Manal, I can feel your pain as I myself is suffering from PCOS from last 14 years. I was diagnosed after I got married. Sometimes my periods are extremely painful and I have gained a lot of weight but people don't understand this and I don't care as I don't live in Pakistan. Plus you mentioned hirsutism and this is the most painful symptom of PCOS for me. We need more awareness about this syndrome as more and more young girls are being diagnosed with this.
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Queen Nov 06, 2019 12:39pm
This should be read by every guy to understand what women go through in life , and it is nothing to be made fun of.
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Sher Baloch Nov 06, 2019 01:24pm
Hats Off to you Ma'am - I appreciate your efforts to make us understand the true nature of this disease. Here one more thing, which should be added with its complete pros and cons that is about the daily intake of CHICKEN in our diet. Many from us, use to eat every dish of Chicken either it is Tikkas, Sandwiches, Pizzas or Biryani due to its availability and also ordering from restaurants. This is a huge mistake which we all do. We need to understand that this boiler Chicken might have a direct link with this PCOS disease. So please all of my sisters stop eating Chicken. You could alter dishes cooked with Chicken, into beef or mutton. Also, try to communicate this with young girls around you about this PCOS so that all of us could able to understand this in a younger stage.
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MF London Nov 06, 2019 04:00pm
I've known PCOs since the age of 16 and battled with embarrassing facial hair ever since. Well written article. They good news is that it can go away on its own and you can fall pregnant whether you have it or not!
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urooj Nov 06, 2019 06:09pm
this is the first i have read regarding the details about pcos.. its was quite shocking and informative too. the pain of periods should be taken seriously.
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Aaqib Nov 06, 2019 07:10pm
Thanks for the article , gave me a detailed overview as my sister is been suffering from last few years and never ever able to talk to me about it (due to Society and cultural restrictions) . Next step is to find a good endocrinologist in Islamabad. Thank you once Again
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Sanjay Kalra Nov 06, 2019 07:14pm
A well written, moving article. Thank you for highlighting this aspect of women's health. Dear author, please reach out to a nearby endocrinologist. There are many variants of PCOS, and most of your concerms can be addressed by lifestyle changes and medication. Let's begin by saying that some ladies live with PCOS, rather than suffer from it. The Pakistan Endocrine Society, and South Asian Federation of Endocrine Societies will be happy to help with improving public awareness on how to prevent and manage PCOS. Get well soon, and live happily and healthily
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Tanveer Ahmed Nov 06, 2019 07:25pm
Thank you for sharing. The endocrine system can be "coaxed" into a normative cyclical behavior with mild medication. Ask your doctor about the "Xulane" (or similar) patch. Despite its advertised use, it regulates hormonal cycles, bringing regularity into your life. An added benefit is you will have less chance of ovarian cancer.
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Afshan aziz Nov 06, 2019 11:03pm
Very beautiful article, every man should read this and get to know that how women suffer during this phase
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ravi Nov 06, 2019 11:35pm
My wife also diagnosed with pcos 8 years back. Regular exercise, controlled diet, and small metformin pill will do the work. As a Husband I can understand all the problems faced by woman who are diagnosed with pcos. What woman need is lot of support from husband and parents
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zara Nov 07, 2019 02:03am
hey, its a nice read. I know that PCOS is hard to manage but I just want to say if you want to manage and handle it better please read the books by Rujuta Diwekar(Kareena Kapoor's dietician) You will start looking at PCO from a different angle, she has so much information and practical tips to almost reverse it. Iv'e found that even doctors have far less information on it and there are so many misconceptions and misleading information. But please read her books you will see that within our own indo-pak food cuisine simplistic changes to food patterns and exercise can help in a major way.
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Imran Khan Nov 07, 2019 03:13am
good that you raised this issue
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Aqsa khalid Nov 07, 2019 03:37am
I am 18 years old.For 5 months, I had irregular periods, sometimes only after a week, I gained weight( and all my family told me to lose weight),excessive hair loss, so much pain that I couldn't move from my place, feeling nauseous to certain foods( and my family would say dieting na karo) and acne which would not go away(coming from a girl didn't had acne before). I have told my mother all of this at time, i was experiencing this. Now a week ago, I went to my dermatologist and told my mother that I have PCOS. She didn't take me to doctor instead she says, I will ask my friend, what to do ( how is a doctor ) or says these doctors are only in hope of getting extra money. And I am like , I told you something was wrong with my body, you didn't take me to a doctor then now when a dermatologist says I have pcos, you still take me to a doctor, when will you ,when it is out of control.( I am from a very well of family)
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Aqsa KHALID Nov 07, 2019 03:44am
I think like breast cancer campaign, PCOS should also have a campaign where awareness is raised. Symptoms, what happens in it and everything related to it. the main issue in Pakistan is that we do not have awareness about most diseases, disorders and most importantly about mental health.
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Erum jhumra Nov 07, 2019 08:09am
Such a well written article! You hang in there girl, things will get better. PCOS is the most common womens disorder in our part of the world, but it’s a shame that people still don’t recognise its signs and symptoms. Two in three girls I see in my practice have one of the symptoms from the syndrome. As you must know by now, PCOS requires a diet and lifestyle change. We must, as a nation, increase awareness about this condition and change our unhealthy lifestyles to make these changes “mainstream”. They would not be difficult to adopt for any girl, if her family stands behind her.
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Erum jhumra Nov 07, 2019 08:19am
What a well written article! You hang in there girl, it will become better. As a dietitian, every two in three girls I see in my practice has PCOS. It’s a pity that people are still largely unaware of its signs and symptoms. We must talk about this more, educate people and make healthy lifestyle changes to keep off the consequences of an unchecked PCOS. I make it a point to involve families in the counselling process, so that they support and commit to the lifestyle changes as a unit. Everyone can benefit from becoming healthier.
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Questioner Nov 07, 2019 08:21am
My sympathies are with you and other women (my wife has PCOS too) who suffer certain conditions and our society fails to understand them. The root cause is a very twisted concept of 'sharam' and 'haya' and a rotten education system that does not provide any help on sexual health and related issues to either boys or girls. Sex education needs to be properly crafted that meets our values and also educates adolescents properly. A country where there is pervasive hidden sexuality, but you cannot discuss health issues in class properly cannot dream of progress.
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Maria Nov 07, 2019 12:35pm
That’s a very balanced write up. Im also experiencing this syndrome. Polycystic Ovary Syndrome (PCOS) has become commonplace in today‘s world. It must be considered a serious issue because PCOS is one of the leading causes of female infertility.
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