Here’s a scenario; painful or missed periods take you to the gynaecologist who orders a bunch of tests. Out come the results and you’re diagnosed with Polycystic Ovarian Syndrome. Or if you’re Indian and living in the suburbs, even medical professionals call it PCOD. The label brings along a bunch of concerns, primarily your looks (weight, excess hair) and reproductive health (the ability to create a baby). You are put on a diet, told to exercise, prescribed a bunch of medicines and sent off into the world without much knowledge or support.
This is the story of most Indian women and girls diagnosed with PCOS. This medical condition affects 1 in 8 women in the world. And yet, most people, including women, have not even heard of it to have the awareness to get themselves checked.
What Exactly Is PCOS?
Polycystic Ovary Syndrome (PCOS) is a hormonal disorder common among women of reproductive age. Since this is a chronic condition that affects a woman’s hormone levels, it causes you to skip periods or not get any periods at all. This condition further makes it difficult for women to get pregnant.
Here is the ultimate guide to navigating PCOS with expert advice, tips and everything you need to know.
PCOS, NOT PCOD
News Flash! PCOS and PCOD are the same things. The term PCOD is a slightly stigmatizing one, leading the world to embrace PCOS instead. It was earlier called a disorder, now it is called a syndrome, taking away the stigma from the condition. The accepted term today is PCOS.
Watch this video to understand the daily struggles that women with PCOS have to go through.
The Lack Of Awareness
In India, since periods and reproductive health are taboo topics, anything related automatically falls under a purda of shame, guilt and lajja. Women have been shamed by the world for not being able to have kids. And often it’s because of underlying medical conditions they have no control over. There isn’t any awareness about the possibility of a condition like PCOS for people to have any empathy for them.
The best of researchers don’t know what causes PCOS, yet most people freely blame women for the condition. From junk food to being overweight and hormonal imbalances; anything and everything that can hold women responsible is pushed as a cause. If anything, the inability to lose weight and hormonal imbalances are a result of PCOS.
PCOS does not mean infertility. Several women with PCOS conceive without any medical intervention.
Recently, there were several myths circulating in social media about PCOS. One of which was how PCOS is a more severe version of PCOD. A post claimed that “The ovaries produce a higher quantity of male hormones among PCOS patients, leading to the formation of more than ten follicular in the ovary every month. This stops the release of the egg and causes anovulation or a lack of ovulation.”
This is simply false! The Rotterdam Criteria requires “polycystic ovaries visible on ultrasound”. In a normal ultrasound, there’s no 3D appearance for you to see the entire ovary and count the number of follicles. Male hormones don’t cause the formation of cysts or cyst-like formations, to be precise. Anovulation does not happen because of male hormones. It is caused by immature follicles as the threshold level of estrogen for ovulation gets messed up.
The general public believes that losing weight and consuming a healthy diet free of processed and junk food along with regular exercise is the only solution for PCOS. The truth is that losing weight is not necessary for managing PCOS. Stating that not eating processed, junk food is the solution wrongly suggests that those who eat purely organic and unprocessed foods can’t have PCOS.
Real Women: The Real State Of PCOS
Awareness begins with us and TC46 knows this well. We asked 3 of our team members to share their experiences with this condition and here are their stories.
1. Yashna Kapasi On Dysmenorrhea
“I was made aware of this condition when I did a laser hair removal treatment at the age of 18 when the treatment didn’t work. I was diagnosed shortly after that, at 18.
My signs back then were excess hair on the body including face, fingers, feet, stomach. I was also suffering from irregular periods and excess pain before and during, along with excessive bleeding. There were times when my periods lasted 15 days plus. I would end up missing a cycle, and then get back-to-back periods in one month. I was told everyone experiences it differently and I got the shorthand of the stick.
After the dermatologist at the hair removal treatment suggested we get it checked, it was when I went to the OB-GYN and she asked me to get a sonogram. After we found out, we actually suggested the dermatologist to make young girls aware of this instead of telling them after the treatment failed, having lost time, energy and money.
I was later put on birth control pills to manage my symptoms, however, I ended up getting headaches as a side effect. After 6 months of constant headaches, I finally decided to stop the birth control pills. I ended up putting on a lot of weight due to the side effects of my headache pills and PCOS, which has been a struggle to lose and maintain.
After 11 years, with the right food, exercise and multivitamins, my cycle is still slowly getting regulated, it’s taking a lot of time, patience and consistency to keep it going. The pandemic surely didn’t make this easy.
I have a 40-day cycle, and my OB-GYN has been so supportive, she tells me not to stress and worry if I miss a cycle. I take as many pain killers as I need on days I can’t bear the pain, a good rule of thumb is keeping a gap of 4-5 hours between medication and not exceeding 4 pain killers in 24 hours, which I follow.
When I have to be out, I wear a tampon and a pad because I’m terrified, and there are times when I was cutting it close. Only during unavoidable situations is when I take medicine to reduce my flow, otherwise, I try to stay at home on the heavy flow days.
About the hair growth, I still haven’t re-done my laser treatment, I plan to do it when I’ve successfully managed PCOS for at least 2-3 years consecutively. For now, I avoid removing hair, only when it’s really really required, I wax, pluck or shave. I also suffer from Dysmenorrhea, diagnosed 4-5 years ago with a sonogram.”
2. Karishma Roya On PCOS Shaming
“I first got to know about PCOS when I was 13 and I visited the gynaecologist with my sister who was getting scanned for PCOS because of irregular periods. I didn’t quite understand it then. For years, it never even crossed my mind that I could have PCOS because my periods were regular, in fact, I had a very short cycle (25-27 days). I never took this to be a red flag. The first time I discovered I had PCOS was in 2018 when I was 29 years old. It was a routine scan after my move to Bangalore and one of the reasons I ended up at the gynaecologist was because of a delay in my periods—my usually super shot cycle was overshot—I hadn’t had a period in 49 days.
Sure enough, both ovaries showed cysts and that’s when it all added up. The excessive hair growth on the chin—I would pluck and pluck every other day, thinking of it as nothing more than a nuisance factor.
Other things came to light—the insurmountable task of losing weight with PCOS. The worst-hit has been over the last year where I’ve gained substantial weight in a really short time. I have now understood that dealing with PCOS is so much about diet. Dairy, carbs, and gluten aren’t the same for my body as they are for someone else. I still struggle and often, when people notice my protein-heavy diet, they chalk it down to Atkins or Keto because I’m a heavy girl and assume it must be just about trying to lose weight. Well, it is, but it is also important for my PCOS and there’s so much about the condition that has become a part of my everyday life, but that doesn’t make it easier. I think awareness is important not just among women with the condition, but those around them too. It’s not a lazy person disease, I’m not overweight because I don’t workout—I workout and eat healthier than everyone in my family. But this is my challenge and I bear the brunt of it. It’s just different for me than it is for others and I’m okay with that but I do not accept any shaming for it. For the chin hair, for the weight gain, for feeling hungry right after I’ve eaten, for the mood swings, for the very real possibility that when the time comes, I may have fertility problems.”
3. Srushti Pathak On The Stigma
“Before my diagnosis, I had no idea something called PCOS existed. Sitting in front of a gynaecologist for the first time ever was when I heard the word. I have been chubby ever since I hit puberty. I knew this was unique since I was a skinny, almost malnourished looking, over-enthusiastic child. But the weight gain was slotted as a gift from puberty and I went along with it. I did it all, played sports, took up dancing and was leading a very normal life, albeit the glaringly obvious weight.
It was my injury that led to the diagnosis. I was on medication and recovering from the trauma of it all. And that was the very first time that I missed my period for 3 months. We went to a gynaecologist who had some blood tests and sonography done. This renowned doctor, who successfully delivered my cousin’s baby, essentially saving their lives, was just cold. She had no hesitation telling me that I might never have kids, may need medical intervention to get pregnant and that I immediately needed to start losing weight. I remember crying on the way home, for hearing this as a 22-year-old was not easy.
My periods are painful and they are sometimes a few days early or late. But largely, my symptoms have been mental health issues and mood swings. I also have darker skin in my underarms and genital area. Even though I was overweight, I was a pretty active young adult, dancing for hours on end. Weight has been the biggest stigma, not for me but for the world. It seems that being overweight gives the world an all-access pass to comment on my body and share unsolicited advice. No one knows the struggle, the gym hours and the hatred that builds towards your own body. Today, I love my body and it did take a while to do so. But now I know that being healthy (mentally and physically), not good-looking, is more important than anything else. And as for my “ability” to reproduce, I don’t care anymore. You don’t have to have kids to be a woman and neither do you have to get pregnant to be a mother.”
5 Indian Celebrities With PCOS
1. Sonam Kapoor
In 2020, Sonam Kapoor made social media posts addressing PCOS in her own way. In the first video, she talked about dealing with the condition since she was 14-15 years old. In the Storytime With Sonam – Chapter 1: PCOS, she wrote, “Hi guys, going to share something personal here. I’ve been struggling with PCOS (Polycystic Ovary Syndrome) for quite some time now. PCOS, or PCOD, is a very common condition that a lot of women live with. It’s also an extremely confusing condition since everyone’s causes, symptoms and struggles are different. I’ve finally figured out what helps me after years of trying several diets, workouts and routines, and I want to share my tips for managing PCOS with you! Having said that, PCOS manifests in different ways, and I urge you to visit a doctor before you self-medicate or self-prescribe.”
She also did a follow-up video after an overwhelming response to the first one. Here, she shared some diet tips, once admitting that it was a push from her mother, Sunita, which made her change her lifestyle for good. “In all fairness, it was my mother who helped me get rid of my excess weight. The first thing she did was to keep me off the stuff I was so fond of as a teenager- chocolates, ice creams, fried foods and sweets.”. The caption said, “Usually my food intake consists of everything natural, fresh and local. Wherever I am, I make sure I indulge in the produce that is locally and freshly available. A handful of berries with coconut yoghurt is my go-to option for breakfast. This coupled with a cup of either spearmint or green tea and a bowl of greens keeps me energised on long days!”
2. Himanshi Khurana
Indian model, actress and singer Himanshi Khurana became a household name after her appearance in Bigg Boss 13 as a wild card contestant. “I have been trolled a lot on social media. Before and after Bigg Boss 13. I have been body shamed a lot. I have PCOS, whoever doesn’t understand it, please go and surf on the internet. Most of the girls go through it. People who know about it will relate with me. During PCOS, your body weight keeps fluctuating. Sometimes you lose so much weight and sometimes you gain a lot of weight. My blood pressure also fluctuates a lot. My BP levels sometimes drop so much that I have to take oxygen for three hours. My manager panics when I don’t respond or get up. My entire team makes sure to keep me away from my phone when I am at home, they try to keep me distracted. We have made this rule, once we shut down the internet we don’t talk about work. We do household chores, talk a lot, and play games. So that we are away from such negative stuff.”
One of her posts on Instagram highlighted how worse PCOS can get. In the post, Himanshi was seen seated in a wheelchair, and captioned the same as “When you are in a wheelchair but the shoot is important.”
3. Sara Ali Khan
Sara was easily one of the first Bollywood actresses to come out and talk about PCOS on national TV at the Koffee with Karan show. Like Sara pointed out, PCOS can cause accelerated weight gain that is very difficult to shake off. Shedding 30 kilos with PCOS is a difficult task and she did it with determination. “I had PCOS. I still do. And because of that, I think I put on the amount of weight that I did.”, said Sara. She also said that even though her eating habits weren’t the best (lots of Pizzas), PCOS made it even harder to lose weight.
Sara follows a high-protein diet focused on good carbs and high fibre. Her breakfast usually includes egg whites and toast, or idlis. For lunch and dinner, she sticks to the basics with chapatis, dal, a vegetable and lots of salad greens. Lunch and workout snacks often include upma, muesli, oats, fruits, grilled tofu, lentils, and more salad greens. Also, with PCOS, it is very important to improve your insulin resistance and metabolism. Sara works out every day diligently and does a mix of routines so that she’s never bored. From Pilates and running on the treadmill to boot camp training and strength and body conditioning movements, the actress is often posting her workout routines on social media.
Read here all about this relatable and the girl-who-could-be-you’s weight loss journey and fight with PCOS.
4. Shruti Haasan
This rising star and daughter of legend Kamal Haasan, has opened up about what leads to her fluctuating weight, days after her hard-hitting social media post on body-shaming in 2020. The actor has revealed she suffers from PCOS (Polycystic Ovary Syndrome) and dysmenorrhea. “I had debilitating pain from my very first period. I was diagnosed with endometriosis and dysmenorrhoea. Sometimes, the pain would be so bad that I would have to come back from school midway. From the usual Crocin to stronger painkillers like Meftal Spas, Spasmo-Proxyvon, I have tried everything. Nothing worked” said Shruti. “I was even put on homoeopathy for a while. Finally, when I was around 18, I was prescribed birth control as a way to reduce the pain”. She also elaborated that she wasn’t aware of the fact that oral contraceptives could have helped her relieve pain. She said, “I had debilitating pain from my very first period. Finally, at 18, I was prescribed birth control as a way to reduce the pain!”.
She said that even her family doctor, who was also her grandfather’s friend, didn’t provide her with the right medicines that could have helped. She said that, “Sometimes, women dismiss the seriousness of their problems. Women as a sisterhood need to start talking among themselves!” Sadly, her mother was told that this problem won’t sort out until she will be married or have babies. Shruti said, “I don’t think marriage is a pill for any kind of ailment! But marriage, or rather, sexual intercourse is often a remedy prescribed by doctors. And as far as I’m concerned, it’s the worst remedy of all”. She agreed with the fact that birth control pills might come with some side effects. She said, “I was never overweight and was always very active. This weight gain really impacted me. At that point, I was at a music school in Los Angeles, and my agility was dropping and impacting my life. The pains the pills were supposed to reduce may have been a little less, but it was still excruciating.” It was then detected that Shruti was dealing with hormonal imbalance as well and she says that people who make fun of PMSing should know that it is a real thing. She said, “There are many times that my hormones have decided my emotions. So for me, this has been a mental process to be calmer, and instead of forcing myself to feel better, letting my body be.”
5. Masaba Gupta
A renowned designer, daughter of Neena Gupta and star of her show Masaba Masaba, she shared some insights on her personal life in June 2021. Masaba took to Instagram yet again to open up about her fight with Polycystic ovarian syndrome. She shared a picture flaunting her toned body and has been getting positive responses from followers including Kareena Kapoor Khan. The designer had earlier revealed that she is slowly overcoming PCOS. In a Q&A session with her followers, she had revealed that cutting down on sugar, dairy, and fried food and weight lifting helped her fight her way through it.
Sharing a picture of herself in workout clothes, she wrote, “I am as committed to my health as I am to my business and my relationships. Say this to yourself every single day. You have to make one thing about Fitness non-negotiable in your life. It all starts there. My 7-9 am workout/walk/yoga is non-negotiable…also no ordering in outside food on a weekday! Simple, ghar ka khaana. No celebration the night before, no amount of stress & no phone call can distract me from this.” She added that, “This non-negotiable has helped me nearly cure PCOD, get off medication, focus better and enjoy time off with the food & drink I love with friends & family on the weekend even more. I’m the lightest I’ve been in 10 years today and want to prove to myself that a lot of hormonal issues us girls have sometimes can be tackled through fixing your nutrition & making physical activity your focus!”
PCOS Warrior Harnaam Kaur: A Lesson In Embracing PCOS
Model, activist, body positivity warrior, motivational speaker and Guinness Book Record holder Harnaam Kaur rocks a full beard as a result of PCOS. Harnaam Kaur’s journey with PCOS, being confident in her own skin and spreading the message of body positivity was not easy. She saw many hurdles and societal bounds, from being bullied in school to dealing with societal pressure. She started keeping a beard from the age of 16, four years after she was diagnosed with polycystic ovary syndrome (PCOS). Now more than a decade later, she rocks her look, models and enjoys social media attention. The Indian-origin British model has also given TedTalks and drawing up her struggles as a bullied teenager, is a body positivity activist.
Harnaam had revealed that PCOS caused hormonal imbalance and resulted in facial hair. Aside from being a brown kid in England, she also had to deal with being called “man” and “beast”. Through the years, she realized that hair removal not only proved the bullies right but also meant her facial hair was something to be ashamed of. At 29, now Harnaam embraces her identity with full flair. Having fought stereotypes all her life took a heavy toll on her mental health. According to Harnaam, whenever she feels “a mess” now, she just clicks amazing selfies. On Instagram, Harnaam writes, “I survived the fire around me because the fire within me is a BEAST!!!!”
Remember, no two women experience polycystic ovary syndrome in the exact same way. And, unfortunately for many women, it often takes years or even decades to receive a diagnosis for the hormonal disorder, delaying treatment and much-needed relief. Knowledge and awareness is the key to dealing with PCOS at its root. Share this with your friends and family and help spread awareness about this condition.