It affects roughly 10-15 per cent of women, between the age of 15-35, around the world, and yet most people don't want to talk about it. But understanding and detecting the problem is the first step towards possibly reversing it.
"All of a sudden, the doctor started throwing around words like infertility," says Aneesha, who had previously not heard of the condition and did not have any family members affected by it either. "It was upsetting."
According to statistics, PCOS affects 10-15 per cent of women, in their reproductive years (15-35), around the world - although these numbers vary across regions. In India, for example, a study conducted by Metropolis Healthcare Ltd, in 2015, revealed that 18 per cent of women suffered from PCOS, with that percentage increasing in East India. Despite this, few people know of the condition, and fewer want to talk about it.
"PCOS is not a disease but a syndrome with varied presentations," says Dr Indira Venkataraman, a specialist obstetrician and gynaecologist with Aster Medical Centre. "Basically, it happens when the ovarian follicles produce ovum that do not mature fully or correctly, as in a normal cycle, resulting in multiple small follicles or cysts. They are not harmful, but lead to hormonal imbalance, causing the ovaries to produce excess male hormones."
This leads to symptoms such as delayed periods, changes in the way one looks and difficulties in getting pregnant. And, if left untreated for a longer period of time, it can lead to severe lifestyle disorders from diabetes and heart disease to high cholesterol, depression and even endometrial cancer.
One of the most alarming things about PCOS is that there is no fixed cause. "Genetics may be a factor," says Dr Indira. "Women with PCOS are more likely to have a mother or a sister with PCOS."
However, this is not a given. Take, for example, the case of Paola Badia, a UAE-based HR professional who hails from the Dominican Republic. For all intents and purposes, her health was perfectly fine. She had great metabolism, never had weight issues, enjoyed working out and didn't have any other hormonal or menstrual problems. But when she went for her yearly checkup with a gynaecologist, she discovered that she had PCOS.
"This happened about four years ago," she says. "I'm the first person in my family to be diagnosed with it. My gynaecologist did a few tests and then, just by looking at my face, could tell that I have it. That's because I had really bad acne as well as facial hair growth."
Paola is one of the luckier women. Since her weight continues to be in the healthy range and her menstrual cycle is regular, she has no need for medication or any changes to her lifestyle. Still, she says, this is all the more reason for women to be vigilant.
"I have a friend who had regular periods but was diagnosed with PCOS," she says. "My advice is if you're having acne and facial hair, and you're doing everything you can to solve these problems, but nothing is proving to be effective, then it's definitely hormonal. Go to a doctor and check it out. Just because you have a healthy weight and are getting your period, does not mean you're safe."
There are a number of different reasons why there is a lack of awareness around PCOS. One is that it's a relatively newer condition, often considered to be on the incline due to modern lifestyles. "There has been a recent increase in the incident of PCOS among adolescents," says Dr Indira. "This is because of the changing lifestyle seen in modern societies. We now have instances of overeating or eating junk foods like ice creams, pizzas, burgers and chocolates. Too much of an academic load with a lack of outdoor exercise, a fixation with social media and electronic gadgets, and the stress growing children have in our competitive world are all factors that contribute to PCOS."
Swati Jain, a PR professional with The Qode, echoes a similar sentiment. Having grown up in Saudi Arabia, she found herself unhappy with life when she shifted to Jaipur, India, for college about seven years ago.
"When I lived in Saudi Arabia, I would swim and workout," she says. "But, when I shifted to Jaipur, I didn't know anyone. I didn't move, didn't work out and wasn't happy. I would sit at home and watch TV all day and eat food, and, in a span of one year, my weight increased by 10kg."
She started missing her period, and would have it once every three months. A consultation and ultrasound later, she was diagnosed with PCOS. However, her doctor told her there was no cure, and merely prescribed pills.
"I took those pills for three to four years," she says. "And that's why I think it's so important to get a second opinion. When I finally did so in Dubai, my doctor asked me to stop the medication immediately because it could cause ulcers. Instead, she advised me to lose weight naturally in order to get better."
While PCOS is not completely reversible, with the right treatment and care, a woman can lead a normal life with no significant complications, says Dr Indira. "Fifty per cent of the problem can be reduced just through weight control. If a woman loses five to 10 per cent of their body weight, the effect is tremendous."
Today, Swati works out roughly five to six days a week, has a trainer and makes it a point to walk at least 10,000 steps a day. Moreover, she watches her diet, has curbed carbs, sugar and dairy, and practices intermittent fasting. The results are incredible - apart from losing weight, her mood swings and bloating have improved and her cycle is now regular.
"Keep in mind that everyone's body is different, and what worked for me may not work for someone else," says Swati. "I recommend women find a good gynaecologist who does not just prescribe pills or shame them. It's also important to have a nutritionist who respects one's opinions and dietary restrictions. Don't follow what others with PCOS may be doing as the severity of their condition may be different."
There's another reason people don't tend to know about PCOS. Since men have no chance of getting the condition, the only way they can learn about it is through female friends or relatives. But, there's also a 'taboo' factor; many women are choosing not to talk about the issue as it is so intimate. That can be a huge problem as an early detection is the first step towards making lifestyle changes that can help reverse it.
"I have a relative who didn't have a normal cycle for years but refused to see a doctor about the issue," says Swati. "Now that's she's past 30, and is trying to have a child, the consequences are more severe."
There's another reason why more people need to talk about PCOS. "One of the side effects of having this is depression," says Aneesha. "When they're diagnosed, a lot of women feel helpless. Many doctors deal with the problem by prescribing pills to help women manage their blood sugar or lose weight and that's not the only solution. That's why it's so important for women to seek help or be a part of a support group."
Since there wasn't a support group in the UAE, Aneesha decided to start one - and the Facebook page UAE PCOS Warriors Support was born. In the span of less than a year, it amassed 75 plus followers. Members of the group post about everything from new research regarding PCOS to healthy recipes. "It's a coalition of information," says Aneesha. "Recently, I even posted about a 90-minute workout challenge, and many women wanted to take part. It's so helpful to have a community that has the same problems and symptoms as you do, and we're constantly helping and supporting one another."
After being diagnosed, Aneesha tried a number of workouts and diets until she found one that worked for her. As someone with PCOS and Hashimoto's disease, Aneesha started weeding out foods that weren't working for her body. That included gluten, soy, diary and sugar, while incorporating more leafy vegetables and organic produce into her diet. In just five months, she managed to drop 22kg. Meanwhile, her cramps reduced and her cycle stabilised. Today, she wants all women with PCOS to know that it is important to love your body, even if you don't feel like it.
"When you have PCOS, your body goes through a lot of changes," she says. "For example, I have hair loss sometimes. And when this happens, it's difficult to love your body. But you have to see this for what it is - a wake-up call. This is your body's way of saying that there is a problem and you need to fix it. Don't feel bad for yourself or indulge in self-pity. What you need to do is love your body enough to commit to a newer, healthier lifestyle."
janice@khaleejtimes.com