PCOS: Another Invisible Cost Of Being A Woman In India

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PCOS: Another Invisible Cost Of Being A Woman
11 min read

In recognition of the need and support for PCOS awareness, September is designated as PCOS awareness month.

PCOS ﹘ a condition many of us have heard about, but very few understand. I have had quite the journey with PCOS myself.

I remember the day vividly. It was 8:30 am. I had to miss my morning class. Sitting in my uniform with a 1-litre water bottle in my lap, I waited for my turn to arrive. I took one large gulp of water after another. If my bladder wasn’t full by the time my turn came, I’d have to wait till it was before I could go in. If I couldn’t control my bladder till then, I’d have to pee, drink a full bottle of water again, and wait. I was 17; this was new and inconvenient.

Finally, the moment arrived – the doctor called me in. I felt thankful that the fullness of my bladder aligned with the timing of my doctor’s appointment. The doctor asked me to lie down and expose my belly, explaining to my mother what the sonography would help him find. 

Then he said the words I didn’t know would change my life. She has polycystic ovaries. 

My mother had no idea what that meant. I had no idea what that meant. All I knew was that I had to go through the aforementioned painful ordeal, and I was relieved that it was over. 

Except that it wasn’t. There would be many inconvenient and painful moments in the years to come, and I wasn’t prepared. I never would be.

Being diagnosed with PCOS and hypothyroidism all by the age of 17, I spent most of my adolescence going from doctor to doctor, getting test after test and prescription after prescription.

At an age where my friends were struggling to choose between McDonalds and KFC, I was struggling to maintain my sanity juggling college and extra classes with my gym schedule and diet.

By the time I was 18, I was taking oral contraceptives, along with pills fit for diabetics and hypertensive patients. I was perpetually moody, irritable, and unable to do regular teen things with my friends. My parents had spent a considerable amount of money on personal trainers, dieticians, and ‘health food’ items. But my body kept betraying me despite the medicines I was pumping into it, and I had no idea why.

Studies show that roughly one in five women suffers from PCOS.

But data also shows that we’re not talking about it enough, and it’s causing women a great deal of physical, mental, and financial stress.

PCOS: Another Invisible Cost Of Being A Woman

1 in 5 women suffer from PCOS, but not enough research is being done on it

What is PCOS anyway?

Polycystic Ovary Syndrome or PCOS is a hormonal condition that elevates the level of androgens (male hormones) in a woman’s body, causing the eggs in the Fallopian tubes to turn into cysts. This contributes to hormonal imbalance, which leads to irregular menstrual cycles, excess hair fall or hair loss, painful acne, excess growth of body hair or hirsutism, insulin resistance, mood disorders, and weight gain among other things. If left unchecked, it can lead to hypertension, obesity, type-2 diabetes, infertility, or cancer.

Different women show different symptoms and to different degrees.

The devastating effect of PCOS on a person’s blood sugar levels lends it the label of the ‘diabetes of the ovaries’. 

PCOS has become as common as having the flu – studies show that a whopping 25% women in Eastern India and 18% women in Northern India suffer from it. What once used to be a problem very few people knew about has grown into one of the biggest health issues affecting women today.

But there isn’t enough research to help those who are suffering.

To begin with, the origins of PCOS are debated. Most doctors believe that PCOS is a mix between a genetic disorder and a lifestyle disease. But either way, the amount of research done is nowhere close to adequate for a condition that affects millions of women. This puts women’s health at risk.

In a study conducted by a non-profit support organisation, PCOS Challenge. Inc, organisations around PCOS support and awareness receive less than 0.1% of government, corporate, or community funding.

What’s worse: organisations that do receive funding to study PCOS are encouraged to study the association between PCOS and infertility, as opposed to other issues associated with it.

A condition that can cause diabetes and heart disease in women is being marketed as a fertility and cosmetic issue.

PCOS: Another Invisible Cost Of Being A Woman
PCOS: Another Invisible Cost Of Being A Woman

PCOS is not only difficult, but also an expensive disorder to live with

Imagine having a period that lasts for days or doesn’t occur at all. Imagine spending all your free time making doctor’s appointments and getting medical tests, all while dealing with mood swings, unexplained weight gain, and losing chunks of hair with every hair wash. It is an understatement to say that PCOS can have a negative effect on one’s body image and confidence.

But did you know that PCOS is as devastating to your finances as it is to your health? Here’s a rough breakdown of the PCOS treatment cost:

Medication

Medicines to control blood sugar, hair loss, excess androgens and rising blood pressure are a regular expense.

Hormonal birth control – the most commonly prescribed medicine for PCOS – costs upwards of Rs. 300, depending on the strength of the dose.

Supplements

Oral and topical medication for thinning hair and acne, specialised shampoos and soaps, and health supplements are often a part of the package. Mood swings and depressive episodes brought about by PCOS lead many women to opt for psychotherapy, which is an added expense.

Tests And Doctor Visits

Whether it’s an ultrasound or a blood test, women with PCOS often incur heavy costs for tests and doctor visits.

PCOS treatment requires a specialist such as an OB/GYN or an endocrinologist, which is costlier than visiting a physician.

In case the ovarian cyst multiplies in size, doctors can recommend surgery – another added expense.

‘Diet’ Foods

With diet plans and packages tailor-made for PCOS patients, there’s no limit to the cost. In my thesis, I talked to a woman who was wrongly diagnosed with PCOS. She was urged to opt for a 3-month weight loss plan from a reputed wellness clinic, which cost her Rs. 20,000, excluding the proprietary diet food items.

Given that women often gain the lost weight back due to such unsustainable practices, the cost for continuing with such a plan can go up to Rs. 80,000 a year!

Gym Memberships And Personal Training

Many PCOS patients are urged to join the gym to aid weight loss.

An average yearly membership at a franchised gym can go from anywhere between Rs. 13,000 to Rs. 15,000, with additional charges for personal trainers and nutrition advice.

Beauty Treatments

Whether it’s acne treatment, hair growth treatments or body hair removal, this is the most emotionally (and financially) damaging cost of having PCOS. It may sound vain, but PCOS often robs women of the feeling of confidence. The rate at which hair grows for women with PCOS forces them to visit salons more frequently than other women.

A close friend of mine, suffering from hirsutism, would need to go for a full-body wax once a week – that would cost her a whopping Rs.10,000 a month.

With health, wellness, and beauty industries booming, it is safe to say that money makers are banking on women with PCOS because of the moolah they have no choice but to spend.

What we don’t think about is that the narrative around PCOS makes women with the disorder feel less than because of their perceived inability to have children, which pushes them to express their femininity more aggressively.

PCOS: Another Invisible Cost Of Being A Woman
PCOS: Another Invisible Cost Of Being A Woman

How PCOS affects women in the workplace

Did you think that PCOS has no effect on your work life? Think again.

PCOS is touted as a ‘lifestyle’ problem, with the onus of dealing with it solely on women. The stress of work coupled with unpaid domestic labour or childcare can exacerbate the problem and negatively impact their progress in bringing their health problems under control.

Workplaces are not sensitised to deal with problems specific to women, and awareness about PCOS is one of them. But there’s a bigger reason why organisations are insensitive to women’s health issues – by accepting that women’s health issues can worsen due to stress, they may have to make amends to better the condition of the employees, which may mean humane working hours and more paid leaves.

To accept women’s health problems is to accept our broken work culture, and many organisations are unwilling to go down that rabbit hole.

Last year, the food delivery giant Zomato announced extra paid leaves for its menstruating employees. The announcement sparked a major debate on whether this policy was progressive. Those who considered it regressive believed that the policy painted women as ‘weak’, and some just believed that women would ‘misuse’ them. For women with PCOS and other menstrual disorders, paid leaves such as these are a boon because they can provide temporary relief. 

PCOS also affects womens’ capacity to create wealth. With the above-mentioned list of expenses (which is not exhaustive), it seems impossible to expect women to achieve financial independence during their working years

When women’s capacity to save and invest is marred by a disorder that has no straightforward solution or cure, how can we expect women to take money matters in their control? It is imperative for their health to be taken seriously.

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Surprise, surprise: Most health insurance policies do not cover infertility treatments

Researchers are encouraged to look into the fertility aspect of PCOS by funding organisations. But even in that context, what is truly surprising is the fact that fertility treatments are also not covered in most health insurance policies.

Infertility rates in India are increasing by the year, but there aren’t nearly enough hospitals that provide fertility treatments to couples.

Due to that and other factors, fertility treatments are exorbitantly priced – a single IVF cycle can cost Rs. 2.5 lakh at the minimum, excluding other tests and treatments.

It should be noted that some agencies do provide health insurance, but there are many conditions and claims that need to be satisfied for eligibility.

With varying degrees of effects PCOS can have on different women, it is unfortunate that medical professionals continue to see it as a ‘lifestyle’ disease, prescribing vague diet plans and birth control, with no proper explanation for either.

This has also allowed for body-shaming, fat-shaming, and slut-shaming both in and outside of the doctor’s office, which can affect a woman’s body image and self-esteem.

Most of us have heard of the ‘pink tax’ – the pricing differences between men’s and women’s products. But where do we place the gendered nature of PCOS research and its effect on women’s relationship with money? PCOS is seen as more of a fertility and cosmetic issue than a metabolic, hormonal disorder that can never leave the body but can only be controlled. But adequate research and a changed narrative around the disease can help reduce the pressure of spending on women and allow them to live a healthy, full life.

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Last Updated Sep1′ 21

Three words Kanksha would associate herself with are: food, feminism, and entertainment. A gender studies major, Kanksha enjoys juggling academic knowledge with practical application. When she’s not busy modifying popular recipes to her liking, she can be found reading two books at a time (because there are just so many) or watching films to catch up with what's popular. Her personal nightmares include a world without dogs, running out of good tea, and word limits.

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