Why polycystic ovarian syndrome remains a painful mystery after 100 years

Nearly a century after it was first diagnosed, polycystic ovarian syndrome continues to be a painful mystery. Questions abound, but some answers are available today

Woman A walks into a bar to meet an old friend, Woman B. The two women are meeting after ages. A, looking at B’s obvious weight gain, asks, “PCOS?” “Yes,” sighs B. And so the story goes. Every second woman today seems to have suffered from some form of polycystic ovarian syndrome, or PCOS, or continues to trudge along carrying the load of excruciating symptoms. PCOS, the syndrome that was initially labelled a disease, is a common tag to blame all of one’s “ladies’ problems” on — irregular menstrual periods, painful periods, male-pattern hair-growth (also known as hirsutism) and, in some cases, infertility. Have you recently gained weight? You could have PCOS. Do you wait for your period like you would for a long-lost lover? You could have PCOS. Are you pre-diabetic? You could have PCOS. Do you have hypothyroid? You know the drill.

As do most women. Living with a syndrome that presents itself differently in different women of differing ages, the possibilities are countless and the answers still pitifully few. “The first mention of something close to what we know as PCOS now was in 1721. We know more than we did then, but there is no path-breaking new research in the field yet,” says Sujeet Jha, director – endocrinology, diabetes & obesity, Max Super Speciality Hospital, Saket in Delhi. True research into PCOS only began in 1935 when two gynaecologists in the US studied the symptoms — facial hair, acne, among others — of seven women and founds links between these and their “thicker” ovaries. Eventually, once their ovaries were biopsied and relieved of their extra weight, these women were able to get pregnant.

‘Some women are genetically predisposed to get PCOS. it isn’t just a lifestyle disorder’- Duru Shah President, PCOS Society (India)

Despite a wealth of radiological and biochemical tests, there’s no sure-fire way of diagnosing PCOS even today. “It’s only been about two decades since awareness about PCOS has risen. Researchers are now working towards a specific test — the AMH or Anti-Müllerian Hormone marker — to diagnose this syndrome. But we are still a while away from this,” explains Duru Shah, director of Mumbai-based fertility clinic Gynaecworld, and president of the PCOS Society (India). Jha says that most women, in fact, rarely need tests to confirm a PCOS diagnosis. “The problem is that we have too many radiology and blood tests available, which leads to different interpretations,” he says.

“We know now, for instance, that merely having cystic ovaries does not mean PCOS. Or not ovulating on time does not mean you need medical attention. It is a combination of factors that needs a tailor-made approach for managing symptoms,” says Shah. For this reason, the PCOS Society has empanelled gynaecologists, endocrinologists and dermatologists to address varying concerns of women suffering from PCOS. The society was also invited to offer recommendations for the “International Evidence-based Guidelines for the Assessment and Management of Polycystic Ovary Syndrome 2018”, which was developed by the Australia-based Centre for Research Excellence in Polycystic Ovary Syndrome. “When these guidelines were being formulated, I realised that insulin resistance and diabetes was not marked up for its link with PCOS. But in India, diabetes is a major concern. It was on the recommendation of the PCOS Society that insulin resistance was added to these latest guidelines,” says Shah.

Is PCOS then a life sentence? Yes and no. “While you can only treat the symptoms and not the syndrome, there are some basic things women can do to not let the symptoms impact their daily routine,” says Shah.

The hormone route

Specific imbalances can be controlled through hormone medication, and most endocrinologists and gynaecologists will prescribe a set of pills based on the symptoms before them. “The metformin hormone has proven to be quite effective in controlling the way PCOS presents itself in women with the diabetes strain and those who are obese,” explains Jha. “Since we do not know if the insulin resistance is causing PCOS or the PCOS is leading to a pre-diabetic stage, we can only prescribe medication for the diabetes part of the puzzle,” he adds. In case there is an imbalance in the male-to-female hormone ratio in a woman’s body — also known as hyperandrogenism — a contraceptive pill to elevate female hormones and spironolactone to suppress male hormones might be prescribed. This is usually done to regulate periods, reduce the impact of male-pattern balding and facial hair in women. Of course, none of these medicines should be taken without the guidance of one’s doctor.

For patients of hypothyroidism — a condition where the thyroid gland needs help to produce the thyroid hormone, which in turn controls the body’s temperature, metabolism and functioning of other adrenal glands — the best way to keep their PCOS-related symptoms in check is to maintain their thyroid levels within acceptable limits. For this, simple tricks like taking the pill every morning at the same time, fasting for at least four hours before taking the pill and not having milk products for two hours after can go a long way.

The fitness route

Eventually, the surest way of keeping the hydra-headed PCOS monster tamed is by losing weight and gaining muscle mass. According to celebrity nutritionist Rujuta Diwekar, a combination of cardiovascular exercises, regular strength training and yoga can relieve a majority of the symptoms related to PCOS. But the key word is “regular”. “The point is to be regular and not over-enthu,” she writes in The PCOD Thyroid Book. Jha, too, believes that over 80 per cent of the women presenting with PCOS symptoms are obese. “If women maintain their body mass index between 18 and 23, it can help prevent PCOS in a major way,” he says. But this presents another problem — the enigma of lean women suffering from PCOS symptoms. “This category of women is particularly difficult to treat, which also leads us to the fact that some women are genetically predisposed to get PCOS and it is not purely a lifestyle disorder,” says Shah.

Still, lifestyle plays a big role in managing PCOS. For instance, sleeping and waking at regular hours, eating at fixed times and following a routine helps your body replicate its natural rhythm. Instagram fitness influencer Sheena believes resistance training — and progressive resistance training in particular — has proven to be beneficial for women living with PCOS (she is quick to add that her advice in no way replaces a medical practitioner’s course of treatment). This means that while doing bicep curls, for instance, each set should have you lifting a slightly greater amount of weight. Diwekar agrees. “This is often called the mother of all exercise or training principles. It means that the stress or stimuli that you put your body through during training should be greater than what you normally encounter in your day-to-day activities and should increase in an incremental order,” she writes. This also means that simply walking in the park or on the treadmill doesn’t count unless it is more strenuous than your regular routine and increases in intensity through the duration of one’s workout.

The food route

On her Instagram page, Sheena highlights scientific studies that suggest that low-fat dairy products could have a negative impact on women suffering from PCOS. However, full-fat milk products have been known to aid the production of female hormones in the body. Diwekar explains this in her book: “Cut the fat from that upper abdomen and waist and not from your plate. Essential fatty acids like Omega-3 and Omega-6 help decrease the glycemic index of the food.” Eating a moderate amount of healthy fat, she adds, will slow down the conversion of food to fat in your body.

But Shah warns that eventually, there is no targeted diet that can help with PCOS. “It just has to be low-calorie. At the end of the day, your food intake has to be lower than your output,” she says.

The awareness route

PCOS boils down to two choices, according to Shah: “When to worry and when to ignore”. The international guidelines are a significant leap in this direction, allowing doctors to see patients’ symptoms as a whole. These guidelines are available on the internet, as is a lot of research material on the PCOS Society website. Though these resources won’t enable you to prescribe hormones for yourself — you need a medical degree for that and anything short of that can be dangerous — they will allow you to understand your body better and know when to seek medical help. 

Diwekar, for instance, prescribes a completely different strategy to managing PCOS: “Don’t blame it on the hormones.” She suggests controlling the known — obesity, weaker joints, lower muscle mass — to control the “unknown” world of hormones and PCOS. Shah adds that there is finally some detailed research about women suffering from PCOS. There is evidence, for instance, on how PCOS impacts women of different ethnicities differently. Another research is trying to locate the source of when PCOS begins to manifest into symptoms. Results may still be a while away, though, and till then, the only way to tackle the enigma is to educate yourself and keep talking to your doctor.