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Time to seriously discuss PCOS, a syndrome affecting one in five Indian women

Polycystic ovary syndrome (PCOS) is often dismissed as a 'menstrual issue' but affects a fifth of India's women and has severe implications if left untreated. It's time we had serious disccusions on the issue, says Amrita Madhukalya

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She would try and block from her mind the several times boys in school would unkindly remind her of her growing moustache. Yet, it was the unexpected comment from her friend's mother that unsettled Swagata the most.
"I had gone to this guy's house along with some friends. His mom spoke to us and cracked a few jokes. Things were beginning to get fun. And then she looked at me and said, 'When you get married, we will gift you a huge hamper of razors.' I was speechless," says Swagata, who was 14 then.

Swagata suffered from a milder form of polycystic ovary syndrome (PCOS). Her periods were regular, but heavy. So the extra weight and unwanted hair on certain parts of her body, especially her face and chin, were not a huge concern for her mother, who did not seek medical attention for the teenager at the time.

Hers is one of the millions of such cases in India. It is also symptomatic of the attitudes that shroud menstrual issues like PCOS. As growing adolescents, young girls who suffer from PCOS are routinely jeered by peers, because in the accepted idea of femininity, there's no space for zits and moustaches.

PCOS, if untreated, can have severe implications. And many say there is no permanent cure. Since it affects a fifth of India's women, mostly in their prime, a national policy to tackle it should be a priority.

Medically, PCOS has been understood to be a complex hormonal medical condition in which the presence of immature follicles in the ovary leads to the expression of 'male' characteristics in a woman. This includes hirsutism, a hoarse voice, obesity and irregular periods. The expression of these symptoms could also lead to type 2 diabetes and cardiovascular disease in later life, apart from cancer of the uterus.

A study conducted in 2015 by Metropolis Healthcare on 27,411 women across India revealed that 17.60 per cent of them had symptoms of PCOS. Most of these were in the age group of 15 to 30 years, with east India showing the highest prevalence region-wise, at 25.88 per cent.

Another study conducted by the Indian Journal of Endocrinology and Metabolism in Mumbai on 600 young girls found that 22.5 per cent had some form of PCOS, with 19.2 per cent having hyper-insulinemia. The study also found that obese girls had more hair, were hypertensive and had more mean insulin.

Dr Sujata Dalvi of the department of gynaecology at Mumbai's Global Hospital says most adolescent patients are painfully shy. "It is usually the mothers who bring them, while the young women rarely find the confidence to talk about their problems," she says. "Most mothers, or in some cases, mothers-in-law, come to us to help keep the girls' facial hair in check, or to regularise their periods. Not many think of long-term ramifications like type 2 diabetes, cardiovascular disease, etc."

In rural areas, even today, over 60 per cent of adolescent girls reuse cloth during periods. Unhealthy practices and a lack of awareness stops necessary conversations on the issue.

Bengaluru-based media professional Prachi Sibal says that medically too, the issue does not get the full attention of doctors. "Most gynaecologists I have consulted prescribe over-the-counter contraceptives that have serious results like cardiovascular complications in later life," says Sibal, who discovered she had PCOS fours years after the onset of menarche. She would have irregular periods, pain and had problems controlling her weight. She took morning sickness pills for years before she realised how harmful they are.

Doctors usually suggest 'lifestyle change' and a different diet without really inquiring about the patient. "When you ask what dietary changes one should adopt, they say you should cut down on refined sugar," she says.

Pallavi Pundir, a journalist with a prominent daily, was given over-the-counter contraceptives and even weight loss pills that made her throw up if she ate anything more than prescribed. A few years ago, she had an acne breakout and unusual weight gain. Her mother, who first did not understand the severity of the problem, later discovered that she had developed ovarian cysts.

"Doctors see this as a lifestyle problem. I was given contraceptives to be used indefinitely and also asked to exercise regularly," says Pundir. Rigorous exercise is generally discouraged if one has PCOS.

According to Dr Beena Muktesh of the fertility department at Gurgaon's Cloudnine Hospital, parents must play a pivotal role in the treatment. "Many parents see this as an inconvenience; they overlook the seriousness because of the facial hair and other immediate expressions. There are also several parents who come here because they are worried about the girl's marriage and whether she will conceive or not."

Doctors also ask patients whether they are married or not, and if yes, whether they want to conceive. If a patient wants to conceive, then doctors show interest in treatment, because family-planning is considered important. Many also believe that conception may cure PCOS. In some cases, it does, though this is an insignificant number.

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