30 year old Vani* works out for at least an hour a day. She has given up all forms of oily food and sugar. Despite following this strict regimen for months, Vani has not lost even a gram of weight.
Her story isn't unique. Vani was diagnosed with Polycystic Ovarian Syndrome (PCOS) when she was 18.
In India, 1 in 5 women are affected by PCOS. Despite the staggering figure, the struggle that women go through in dealing with this condition, does not get the empathy it deserves, simply because there is not much awareness of the same.
While most people immediately link PCOS to fertility issues, they are unaware of all the other ways in which a woman can be affected.
PCOS is a condition in which the levels of the sex hormones, estrogen and progesterone, go out of balance. This leads to the growth of cysts in the ovaries, causing problems with the menstrual cycle, fertility, cardiac functions and even the physical appearance of the person.
Polycystic Ovarian Disease (PCOD) is also caused due to hormonal imbalance and has similar symptoms, but while PCOS leads to hair thinning, PCOD encourages male pattern growth of hair on the face and body.
Not everyone has the same symptoms though, and sometimes women can suffer from hair loss on the head, but have excessive hair growth elsewhere. Between the two, PCOS is considered to be more serious.
30-year-old Dhivya, who now lives in Singapore, was diagnosed with PCOD nine years ago.
Dhivya had always been very lean as a child. "I was used to hearing people giving suggestions for weight gain, and suddenly one day, I started to gain weight. I was really happy, after all which woman wouldn't want curves? But before I realized it, I'd gained some 12 kilos. My periods became irregular and there was a sudden increase in hair-fall. The doctor said I had PCOD," recalls Dhivya.
"This happened around the time my brother was getting married," she continues. "Every single relative then started giving me tips on weight loss….mostly in the line of 'move you’re a** more'. Some of my cousins were visibly elated at being able to call me fat!"
At that time, awareness about PCOS/PCOD was even lesser, and most people around her believed that she'd put on weight because of "laziness".
Many also said that with her new frame and loss of hair, she looked like a man. This, despite the fact that Dhivya does not have hirsutism or excessive facial and body hair, which is another common symptom of PCOD.
In Nayana's* case, since her periods were regular, nobody suspected that she had PCOD. It was her dermatologist, to whom she'd gone for severe acne, who figured it out after several scans and blood tests.
Nayana, who was 26 then, did not tell anyone in her family about this initially. When her mother found out, Nayana says that the latter was worried that her daughter had to take birth control pills (Nayana was not married then) and Metformin, a common medicine administered for diabetes which is also given to PCOD/PCOS patients.
"The moment I go off my contraceptive pills, it's like a volcanic eruption on my face," says Nayana, adding that she also suffers from weight gain, excessive facial hair and hair loss. Four years since her diagnosis, Nayana accepts that the going will be hard, and that she must maintain a healthy routine, even if there are no visible results.
Krithika* found out about her PCOD, when she was 19. With medication and a good exercise routine, she has managed to shed some weight.
"When I first took Metformin, I was in my early 20s and it used to cause nausea and stomach-upsets. I never used to be regular with the medication back then," recalls the 33-year-old. "Now I understand the importance of taking it, but I also wonder for how long I'm going to keep doing this."
The birth control pills that she had to take also lead to mood swings.
"I have hair growth on my arms, legs, everywhere. Even sideburns," says Krithika. "My chin and upper lip require frequent threading."
For Vani, who has been married for five years, the comments she hears from people about her inability to get pregnant because of PCOS, hurt the most.
"I also have facial hair, hairy arms and legs, irregular periods, lack of sex drive and male pattern baldness," she says. "I've big bald spots that I cover with great difficulty. I'm constantly threading and tweezing my facial hair and it gets frustrating. I go for a threading session on Saturday, and four days later, the hair on my chin is back," she says.
Many women do manage to get pregnant, in spite of PCOS/PCOD. But the pregnancy is far from easy. Sheetal* says, "I went through Intrauterine Insemination (IUI) four times in vain."
Sheetal finally became pregnant through natural means, but she had to take two injections per day for 45 days because she suffered from PCOD. From the 9th week of pregnancy till the 36th, it was 3 per day. She also had to get her uterus sutured as well as take a lot of steroids during pregnancy to avoid preterm delivery.
Sheetal suffers from body-image issues, mainly because of her excessive weight. Even though people around her say that she must try for one more child, she is simply not ready to go through it again.
In a country where people consider it their birthright to ask a newly married couple about when the "good news" will be delivered, this insensitivity can be doubly painful for those who struggle with PCOS/PCOD.
The accompanying body-image issues can wreak havoc on their psyche, and lead to extreme frustration. Given that so many women suffer from the said condition, it is time to initiate public discussions over the same, leading to better understanding and empathy from those around them.