September is Polycystic Ovary Syndrome (PCOS) Awareness month, and my heart warms every time I see a post declaring the same on social media. The 13 year old me skips in triumph as awareness spreads and there is more recognition and acceptance about the syndrome.
PCOS affects 1 in 10 women in India. It often impairs fertility, alters the period cycle, causes weight gain, even diabetes, acne and excessive body hair. In the recent past, Bollywood’s most relatable youngster, Sara Ali Khan opened up about her struggle with PCOS on an episode of ‘Koffee with Karan.’
The PCOS Society in India, says, that up to 70% of women who have the disorder are not diagnosed.
Since there is no one test to diagnose this tricky disorder, one study says that it takes an average of seeing four doctors before being properly diagnosed. September then is the month to raise awareness and quicken the process of diagnosis.
That Dreaded Visit to the Gynaecologist
Gynecology visits are not common features in a teenager’s calendar. But, after consulting every specialist available, that was the only option left. A year after my menstruation started, my periods became extremely irregular, sometimes even appearing after a four-month gap. My naive friends felt I was lucky to be spared of the monthly anguish, but on the contrary, the irregularity ensured that those five days, the pain would leave me immobile. Surrounded by pregnant women and pictures of infants, at the age of 13, I found out that I had a syndrome that sounded intimidating and unknown.
My gynecologist's vague explanation of the disorder left me scared and disoriented. Her explanation began by declaring that this will affect my fertility in the future and ended with blaming my weight as the sole cause. After leaving her clinic, the only two things the young me knew about PCOS were- I was going to fail at one of the fundamental duties associated with my gender and it was all my fault.
Struggle with Body Image
Unsatisfied with the answers provided by the visit, I turned to the only other source, the internet. The research left me with more worries than answers, while some sites listed out the negative effects this will have on my kidneys, sugar level and hormones, other sites had images of heavy bearded women in the symptoms section. None of them had a clear picture of the causes or treatment. Even today, research cannot pinpoint specific causes or symptoms for PCOS. We only know that it manifests differently in different women.
However, we know now that early diagnosis is important since it has been linked to an increased risk for developing several medical risks, including insulin resistance, type 2 diabetes, high cholesterol, high blood pressure, and heart diseases.
With no clarity and awareness about PCOS, the only culprit I could then find was- my body. I felt betrayed and dejected, my body image and self-esteem took a deep dive.
As a teen with no knowledge about weight management, the fastest way I could find to reduce weight was to stop eating altogether. This pattern then soon effected all aspects of my life, while I developed a deficiency of iron, the forced starvation ensured that I remained irritable and tired throughout the day. Many experts will tell you, starvation is never the answer, and at the end, I came up with no results and several damaged personal relationships.
While later, with the help of my family and friends, I did form a healthier relationship with my body, to get there was a struggle that was accentuated by the low awareness I had about the disorder my body was battling.
What’s the Priority in Treatment?
In the past nine years since my diagnosis, I have changed doctors frequently and two of the main symptoms that take priority are weight increase and facial hair growth. While research shows that loss in weight is important for treatment, the obsession with these symptoms is not merely health-related.
One doctor asked me to lose weight to look prettier, another suggested laser removal of hair, with no mention of the risks. Both symptoms challenge the social ideal of a perfect woman. Even in research and media, these symptoms along with infertility are the ones majorly associated with PCOS.
Those suffering from PCOS are also prone to depression, anxiety, heart diseases, and other complications. After being treated for PCOS for so many years, I came to know about these dangers recently through a friend. While weight gain, hair growth, and infertility interfere with social ideas we associate with womanhood, mental health and other complications are individual struggles. The priority in treatment and awareness then is an indicator of how we view women in our society.
In the past, the research around PCOS was concerned with correcting cosmetics and infertility. As more and more younger women share their struggles, the discussion has been pushed forward towards the social and personal repercussions that rise with PCOS.
Solidarity and Support
When I was diagnosed with PCOS, there was confusion, fear, and guilt. Now, with understanding and knowledge, I have identified how to manage my lifestyle to suit the treatment. The difference between the 13-year-old me and now is that I know I am not alone. With so many people speaking out about PCOS, from celebrities to social media influencers, the elusive disorder seems less unknown and scary. The key then is awareness and understanding, the assurance that you are not alone.
(At The Quint, we question everything. Play an active role in shaping our journalism by becoming a member today.)