In India, polycystic ovary syndrome (PCOS) and polycystic ovary disease (PCOD) are the most common hormonal disorders among women. As per studies conducted in the states of South India and Maharashtra, 9.13% and 22.5% of women suffer from the conditions respectively. In fact, on a global scale, one in every 10 women within the age of 18 to 45 years suffer from this.
However, despite how common the condition is, in India, we are still struggling to come to terms with it. There are varied factors to be blamed here. One, the lack of honest, open conversation leads to a lot of women ignoring the initial signs. This eliminates the vital step of getting an early diagnosis.
Apart from the lack of conversation around it, there is also a social stigma attached. People assume that if you suffer from PCOD and/or PCOS, you will also have infertility–a condition that we deem to be the worst thing that could happen to a woman.
To start an honest conversation around this, and to get an idea of what living with PCOD and/or PCOS is like, we got in touch with six women who have been dealing with this for years now. We asked them about their journeys, how has it affected their lives and how much information is available around it. Here’s what they had to say:
Lack of information
“I don’t think there’s enough information about it even now” Ujwal Salokhe Anand, 32, entrepreneur.
“I figured in my final year of graduation that I had developed PCOD–I had missed my periods for almost six months. I had no idea what PCOD was at that point since nobody in my family had ever really experienced it. The most significant physical change since then has been the increase in my weight and frequent weight plateau while trying to lose the kilos.
“The other change that I’ve noticed is unusual dark hair growth around the chin area and on the upper lip. However, over the years, I’ve learnt not to be too conscious about any bodily changes. I try and be comfortable as far as possible about my body size. As for the facial hair, I treat it cosmetically just the way one threads one’s eyebrows or waxes one’s hands and legs.
“However, I do wish that more people talk about this. Even now, I don’t think there’s enough information that can help a person suffering from PCOD and/or PCOS to overcome it. The first formal line of treatment I received was consuming contraceptives around my period days. I then discovered that the long-term effects of its consumption weren’t a good option. So yes, I’d say that I am still in need of a concrete solution to my problem.”
It’s mentally exhausting
“It’s depressing to deal with so many bodily changes,” Subuhi Joshi, 25, TV actress
“I used to get a shooting pain in my abdomen every month, but I had no idea what it was. I remember once I collapsed in the middle of a mall because of the pain. I then visited my gynaecologist, who told me that I had cysts in both my ovaries. That’s when I got to know what PCOS is.
“One of the most significant lifestyle changes I’ve had to make is to give up on sugar. It has been really long that I haven’t had sugar and sweets, and it’s challenging for me since I have a sweet tooth. I’ve also seen myself gaining a lot of weight because of PCOS. It’s depressing to deal with such body changes. You lose your self confidence. But the only way to deal with it is to have a healthy diet, which is low in fat and calories.”
Acne and pimple attack
“I have to deal with severe acne and pigmentation,” Zahra Motorwala, 29, writer.
“After I got detected with PCOS, I was asked to start working out immediately. Weight loss was recommended but it’s extremely tough to lose weight with PCOS. I was also later asked to eat healthily, include yoghurt in my diet for natural probiotics, and have a lot of veggies.
“My PCOS affects my facial skin resulting in severe acne and pigmentation. My skin becomes exceptionally dull, and nowadays, I have a huge hair fall problem. I have very thick body hair growth—also thick hair on chin, chest and naval region.
“People assume that I have bad skin due to the fast food that I eat or the ‘unhealthy’ lifestyle that I have. But there’s very little I can do about the acne problem, as it’s all hormonal. It will help if people are more willing to talk about this.”
When your hormonal cycle goes upside down
“My body went through a lot of changes,” Rinku Nagrecha, 34, homemaker.
“I was struggling with irregular periods (hormonal imbalance ) before I got married. Because of my work schedule, I had put on weight and immediately after my marriage, I stopped getting my periods. I waited for nine months, did a few pregnancy tests, and then visited a gynaecologist who then told me that I had PCOD.
“Back in 2008, there wasn’t enough awareness about this issue. My body was going through a lot of changes, like weight gain, feeling lethargic, getting stretch marks. Initially, I used to hesitate to share this with my friends and family. However, I’ve come across many women of my age suffering from this PCOD, so I always talk about it and share my experiences.
A sheer feeling of helplessness
“I did everything right, but nothing seems to help,” Ritika Chouhan, 35, assistant manager (operations).
“Up until college, my periods were fine but soon after I started working, they became irregular. I didn’t bother thinking much about it and thought that it’s okay to have delayed periods, but then I realised I was also putting on weight. That was a major alarm for me to visit a gynaecologist. She put me on these tiny 21-days pills for six months, and I started to get my periods on time. However, the cycle repeated each time I stopped taking the pills.
“Honestly, I worked out, ate right and did everything possible in my power to make sure that I get rid of this condition. But I guess nothing helped. I’ve also come across girls who are extremely fit and still have PCOD. Hence, somewhere I feel that this general assumption that you have this condition only if you have an unhealthy lifestyle is not correct. It would be great if there was more clarity on this and people would share their personal experiences as it’s a different journey for everyone.”
Time to bust the myth
“We need to address the myth that weight loss is the only solution,” Lalitha Gupte*, 37, HR Professional
“I got my periods at the age of 10, and back in the day it was considered early. When I was 12-13, my periods started getting irregular, and my mom immediately took me to a gynaecologist. I was told that I might grow up to develop PCOD/PCOS, but the condition wasn’t explained adequately.
“At 21, I started getting terrible pains before my menstrual cycle, and that’s when I discovered that I had PCOD. It has been a long and harrowing journey for me. However, the general idea that you need to lose weight to overcome this has been one of the worst things I have had to deal with. The medicines you’re taking anyway make you put on weight. When you cannot lose despite doing everything right, it can get really frustrating and depressing. I wish this myth gets addressed by doctors.
“Also there is a taboo in India around PCOD and PCOS as people tend to link it with infertility. We hesitate from actually eliminating the problem because we are scared that this may lead to us not being able to bear children.”
*Name has been changed
Watch out for other symptoms as well
“Irregular periods isn’t the only symptom to watch out for,” Shraddha Verenkar, 25, teacher and co-founder of The Period Movement
“Despite regularly visiting the gynaecologist, I was diagnosed with PCOS very late. Most people assume that PCOS would mean irregular periods; however, that never happened to me, which is why I wasn’t diagnosed early on. For me, the pain before my periods were terrible. My cramps would start 10 days before my menstrual cycle, and it was tough to deal with it. I started putting on a lot of weight as well, and I still do have a small beard on my chin because of this.
“However, conscious lifestyle changes, like going to the gym, helped me. I also started looking at this more positively and have decided to do whatever I can to overcome it. This whole journey inspired me to start ‘‘The Period Movement’’ with my friend, Huda Shaikh. We realised that we lacked the required knowledge at our puberty and that’s vital.”
From lack of knowledge about the condition, to the shame associated with it that stops people from talking about it, there are a lot of gaps that need to be covered here. Let’s start by educating ourselves, and having an open, honest discussion about PCOD and PCOS.”