What We Talk About When We Talk About PCOS

Welcome to the second edition of Unscrewing Ourselves, where we hope to normalise topics on sexual and reproductive health and wellness.

When I volunteered to do a piece on Polycystic Ovarian Syndrome (PCOS) two weeks ago, I inadvertently started a running joke amongst my colleagues. “You’ll find someone with PCOS every two steps you take,” laughed one. “I’ve suffered the pain of PCOS/PCOD because my girlfriends have had it,” said another, initiating a series of eyerolls (and the rebuttal: “No ovaries, no opinions”). Some helpful ones promised me “three accounts each”, making my quest sound a bit like an underground deal for contraband in prison. A few, urged by a message on the office Slack channel, walked in with stories of warning signs, symptoms, and, finally, that of making peace with the demon cysts/follicles making merry on their ovaries.

Of course none of this is new to me. I’ve lived with PCOS, for over seven years. It’s debilitating, physically, and also mentally—the perpetual reliance on medicines that come with crippling side-effects such as depression and anxiety, the complete overhaul of appearance (for the worse, of course) and, perhaps the worst of them all, the constant societal (friends, family, heck, even strangers) reminder that you don’t “look” right. I had rehearsed one too many times a bitter retort for every time a stranger or relative told me apply some life-changing jadibooti/weight loss tricks. Yet, every time, their remarks would stump me into silence. During particularly bad phases of PCOS, I have gone days without looking at myself in the mirror. Meeting people would give me anxiety attacks. A selfie was unthinkable.

The Indian Journal of Endocrinology and Metabolism describes the condition as a “common diagnosis in women presenting with infertility”, followed by, “All the dimensions of PCOS have not been completely explored”. There is no universal definition of this metabolic, endocrinal and reproductive disorder but the most common symptoms manifest in the form of irregular or the absence of periods, ovarian cysts or enlarged ovaries, excessive androgen, weight gain (not always though), hirsutism (excessive and unwanted hair) and cystic acne (phew!).

Till date, the exact cause is not known.

Women have been diagnosed as early as 12 years old, as this small survey shows. Several factors are attributed to it—lifestyle, stress and insulin resistance are the most common ones. For many, though, the change of appearance (because irregularity of period, personally, never really alarmed me as much as seeing my body transform within months) is usually the first warning sign. There are clear signs of mental health effects, too, such as anxiety, depression and eating disorders.

In India, ample research and study into PCOS have taken place. In the medical field, a joint research conducted by AIIMS and Sher-i-Kashmir Institute of Medical Sciences (SIMS), based on a sample size of 3,500 patients—reportedly the largest such data in the world—highlighted that 20-25% of women of reproductive age in India have PCOS. “Our latest findings indicate that in India, every third or fourth woman is affected by it,” said Dr Mohammad Ashraf Ganie, associate professor, department of endocrinology and metabolism, AIIMS, in an interview with The Indian Express.

There is even room for informal works such as this series, wherein Delhi-based writer and academic Shruti Buddhavarapu wrote about famous pop-culture icons (Nancy Drew, Alice in Wonderland and Jane Eyre) struggling with PCOS. Clearly, normalising is in the works.

Despite all the data, research and numbers from not just India but also across the world at our disposal, PCOS is still a complex disorder. The problem exacerbates when, worldwide, there prevails the overpowering stench of social stigma around female bodies that reduces our functions to our reproductive abilities and ultra-femininity. What happens to female sportspersons such as Dutee Chand is a testimony to the archaic but very real laws across the world that deems hyperandrogenism (also one of the byproducts of PCOS) as unfeminine, barring one from even participating.

If our recent history has taught us—like this Mumbai college principal who claimed that PCOS is caused when women “dress up like men”—it’s imperative to point out that there’s a lot left to be desired when it comes to public knowledge of the condition. Then there’s the stigma and the subsequent psychological distress of those going through their PCOS journeys.

I reached out to some of my urban counterparts across the country to tell me their stories.

“It really sucks to not go through the ‘feminine’ experience as ideally prescribed”

Supriya Joshi, the Mumbai-based writer and comedian commonly known as Supaarwoman on social media, remembers being 12 or 13 when her mom took her to a family doctor after spotting black patches on her neck, and noticing that her periods were either late or not there at all. Once she was diagnosed, she was immediately put on Oral Contraceptive Pills (OCP), which is the go-to treatment to fix not PCOS but the menstrual cycle (a common symptom of PCOS, not the disease itself), when she was in Class 8. “I was so young,” says the 32-year-old, who also encountered weight gain, hirsutism and hair loss (“what a great deal!”), and “years of not getting a period”. However, it was this one time in school that made her realise that “something is not normal with me”. “I used to have one strand of really long beard hair and a girl from my class noticed it. I told her not to tell anyone, and the next day, she ensured everybody saw it by pulling at that hair from my chin and showing people. I went home and cut it off,” she says.

Sharanya Vaithianathan, a yoga practitioner from Mumbai quit her media job in her early 20s after she gained 20 kgs in a matter of few months. The cause: PCOS. “From being 35 kgs and super anaemic, I became 55kgs. My yoga instructor immediately asked me to change my lifestyle. In my yoga routine, we have classes about human bodies, and PCOS was spoken about as one of the leading causes of obesity among women.”

The journey was simple: wellness and self-healing. Instead, comments from friends and family added to the distress of the sudden physiological strain. “My mom has diabetes and is a little healthy. When I was thin, people would say, ‘Your mom eats up your food or what?’ Once I put on weight, they started saying, ‘Oh, looks like your mom has given you all the food back,’” says Vaithianathan. Among female friends, the 24-year-old would often get ragged for not having “tits and butt”. “But when I gained weight, they said, ‘Maybe you should have gotten PCOS long back. You would have looked much better’.”

“I had a very challenging time as a 16-year-old. At a time when my peers would put so much emphasis on our physical features, I wondered why I had been singled out for this ordeal,” says Shweta Singh, a 26-year-old artist and a teacher. “I’ve been called a lot of names by my peers as a teenager: pimple-face, ugly, disgusting, fat, hairy. My then boyfriend left no stone unturned to make disparaging comments. He’d even ask me if I washed my face. He’d say in a very innocuous manner, ‘You’d be so pretty IF you lost weight and got rid of the pimples.’ My supposed ‘friends’ at school seemed to echo what he said. Very few people (two!) were empathetic. We’re friends to this day.”

“My doctor’s comment traumatised me”

The scrutiny from the doctors is especially debilitating, since a lot of trust is placed on them with regards to not just treatment but also judgement. Manisha Rajendran, the post-production supervisor at VICE India, talks about how the daunting manifestation of PCOS (no periods for 2 consecutive months, pus pimples, horrible back pain and weight gain) was made worse when, once diagnosed while she was in boarding school, her second doctor told her her PCOS is a result of: “You’re fat”. “That just traumatised me. I equated everything with my weight to the extent that I ended up becoming bulimic,” she says, “That one statement just damaged my confidence. I remember one relative telling me, ‘You can conveniently blame the PCOD for being fat now, right?’”

“A lot has changed even in the last 10 years, but a lot of doctors would talk about the syndrome in a very moralistic way (irrespective of their gender)—you should lose weight, you’re not taking care of yourself, you brought yourself to this point, don’t you want to be a mother someday, why wouldn’t you want to look “like a woman” and feel attractive?” says Buddhavarapu who, at the age of 27, started to formalise her own experience and understanding of PCOS into research work at the University of British Columbia. “For someone whose only source of information is their doctor, it can be very debilitating to leave your doctor’s room after being made to feel both guilty and responsible for bringing yourself there. The first doctor I went to told me I had caused PCOS to myself because feminism was getting too out of hand. Bless her,” says the 30-year-old, whose book on living with PCOS is set to be published this year by Rupa Publications.

And if your doctor/friends/family is the rare variety of helpful and non-judgemental, then there’s always the not-so-subtle art of intrusion practiced by strangers on the streets. “Once I was waiting at a metro station and a woman sat next to me and gave me gharelu (homely) advice on how to get rid of facial hair,” says Joshi. “It really sucks to not go through the “feminine” experience as is ideally prescribed, but what can I do about it? I used to be very conscious of my facial hair when I was younger (I used to get my entire face threaded twice a week!) but now I really don’t care about it that much. Now if and when I get my period, I feel like celebrating, instead of crying about it.”

“The docs didn’t really care for the fact that I didn’t want babies”

One of the major focus—the only one in India, perhaps—of PCOS treatment is to gauge how the disorder affects women’s reproductive condition. Since higher-than-normal levels of androgen affects the release of eggs (hence the irregular or absence of periods), it means that the sperms will not be able to fertilise it. It’s the first question most of our gynaecologists have asked: when do you plan on conceiving? It’s also the unwarranted advice of the elders: ‘Have a baby, and it will go away.’ “There’s this hyper-focusing on infertility. It’s almost as if with PCOS, the major anxiety is to do with how a woman is supposed to look [“feminine”] and what her body has been put on earth to do [make babies],” adds Rao.

Hyderabad-based writer Srinidhi Raghavan, who held a small survey two years ago to include 81 voices from across the country, observed this trend. “I’m on WhatsApp and Facebook support groups for PCOS, and fertility is one of the biggest problems. For women who don’t want children, or women who are not thinking about it at this point—there’s no treatment in the offing for them,” says the 28-year-old who also has PCOS. “One thing that I felt heavily towards treatment is that the docs didn’t really care for the fact that I didn’t want babies. If I don’t want babies then how does it matter that your ovaries are fat? This was enhanced in the survey. A lot of women talked about it, which surprised me because I thought a lot of women came to know about it only because they wanted to conceive.”

“PCOS is not a ‘female’ disorder”

According to the aforementioned research between AIIMS and SIMS, PCOS affects men as well. “Initially, it was thought to be linked to gender. Now we’ve found that in cases of a woman having PCOS, the probability of a brother or other male family members having the same disease is very high. Our research has shown that the same metabolic syndromes present themselves in 80% of the cases in male family members,” said Dr Ganie.

Adds Buddhavarapu, “Yes, I think it’s vital to acknowledge that the explosion of PCOS around the world is set against our ever-increasing toxic environments. Men and women are both feeling the stresses of living in the modern world, men are also showing effects of high-androgen levels in their bodies, they’re also balding younger and dealing with obesity etc, but it makes obvious sense to catch it first in women because the female body has been surveilled for millennia.”

“With a syndrome like PCOS, it’s easy to slip into absolutes of gender and sex (aka this is a “female” disorder). So many folks who might not identify as women have PCOS, scattered research indicates a high percentage of trans men have PCOS too. It’s hard enough for cishet identifying women to deal with the rampantly sexist attitude towards both PCOS research and its treatment—but queer or non-binary folks are even further alienated when you focus the whole discourse around femininity and fertility,” she says.

“Don’t beat yourself up”

Conclusively, I asked a few ladies to share words of wisdom accumulated from their years of PCOS journey:

“Hirsutism is NORMAL. There’s no point in being ashamed of your body hair, even though years of conditioning have taught us that it’s bad. Go easy on yourself. PCOS is the most common thing among women… don’t beat yourself up about it.”
— Supriya Joshi

“I’ve heard that when you get PCOS you get hair everywhere: Utter BS! Yeah, it does alter your hormonal scene but it does not aggravate hair growth. I’ve also heard it’s impossible to lose weight. It’s hard, but it is not impossible. I was also told you can’t do heavy lifting, that is not true. One shouldn’t do it if they’re not used to it because they might just break their back but it doesn’t affect your ovaries.
— Manisha Rajendran

“From what I read, it affects one in three women in the country. Which means that a lot of women are suffering from it. But there is just an insane lack of understanding by other women and men, and I feel like there’s a lot of judgment associated with all the external manifestations of the problem. There’s apathy in women also. They would ask very brash questions about attributes of your body.”
— Anonymous

“I’ve heard that women who are ambitious get PCOS, because they want it all. This ambition causes stress and thereby leads to PCOS. I remember thinking that it seemed daft. Sure, I’m ambitious and I want it all. By the transitive property, should every ambitious woman be afflicted by PCOS? Nope.”
— Shweta Singh

“My family never understood or cared to understand my diagnosis. It was always put down to weird things like ‘watching too much TV’ or eating untimely. My mother once blamed my watching of Sex and the City to be the root cause of my hormonal imbalance! (Though she was mostly just pissed I wasn’t letting her watch her shows).”
— Cauvery Rajagopal

Read Part 1 of the series here.

If there’s a subject within the spectrum of sexual and reproductive health in India that you feel strongly about and want to vocalise it, write to indiapitches@vice.com.

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