The discussion on PCOS is changing in India, and it’s about time

For Polycystic Ovary Syndrome Awareness Month of 2021, India is witnessing increased dialogue about women’s health as well as the first summit by PCOS Club India dedicated to ‘sister-hood’.

When 28-year-old Noor Shukla (name changed to protect privacy) decided to deal with her polycystic ovary syndrome (PCOS), an extended member of her family took her to an acquaintance who was an Ayurvedic specialist. . Instead of offering sympathy and holistic guidance, she told Noor that she was ‘disgusting’, ‘fat’, that she had ‘no shame’, and that she ‘better help herself.’ Eleven months later, Noor tells metroplus He is too upset to talk openly about PCOS.

“I had already gone to a few doctors at that time and felt very little empathy or understanding. People don’t understand the difficulties of living with PCOS,” she says over the phone from Pune, as she works at a food aggregator She works 14 hours a day as a marketing executive for P.C. She says this work routine triggered her PCOS.

What is PCOS?

  • PCOS, also known as poly-cystic ovary disorder (PCOD), occurs when a hormonal imbalance disrupts the ovulation process, which can lead to missed or irregular periods as well as other symptoms such as: Hirsutism may also occur. (excess facial and body hair), weight gain, insulin resistance and hair loss. PCOS can cause infertility and, as the name suggests, the development of cysts (small fluid-filled sacs) in the ovaries.

In India, PCOS is a taboo disorder; The buzz around it over the past few decades has been more shoddy because of its association with infertility. Women living with the condition feel marginalized and sometimes even isolated when asked to explain the situation, especially during an arranged marriage process.

health status quo

The pandemic’s impact on women’s health can be described as “a double-edged sword,” according to Achita Jacob, founder of Proactive for Her, a digital health clinic for women. After setting up the clinic in August 2020, she observed how the lockdown “disproportionately affected women as they have blurred the lines between work and home.”

Read more | Sexual health under lockdown: The answers to the questions you’re too shy to ask

As PCOS Awareness Month (September) begins worldwide (September 1 is marked as World PCOS Day), the dialogue about women’s health care has changed over the past 18 months. Most health practitioners saw an increased responsiveness to their health on the part of women and other menstruators.

“The pandemic has forced introspection on lifestyle habits and how they contribute to health,” Achita said. “I have found that women are increasingly seeking care and more vocal about their relationships with their doctors. They are more likely to settle for run-of-the-mill solutions for PCOS, such as weight loss or birth control pills. are not interested, which do not suit their needs.

Anushree Mahajan, a certified health and life coach, better known as Coach Nusho

Bengaluru-based Anushree Mahajan, health and lifestyle coach (@coachnush He was diagnosed with PCOS at the age of 15. She now works with women in both the Western and Eastern hemispheres and she notes some disparities: “In India, dietary and lifestyle changes are more likely to be recommended by medical professionals. PCOS than in the United States.” As the first response to diagnosis, but the push for drugs such as birth control and metformin (a first-line drug for the treatment of type 2 diabetes and insulin resistance) is also less likely to be the first response by medical professionals in India .

The syndrome is often exacerbated by a range of mental health effects: depression, anxiety and fluctuating moods. “We have seen an increase in the demand for tele-consultation with mental health professionals and our long-term PCOS support program,” explains Achita. “While we are pleased to learn that they are prioritizing their well-being and recognizing that their burnout will negatively affect their family balance, there is a dire need for us to create a support structure that will help them to achieve their health. We shouldn’t wait for another pandemic before women who have lived with PCOS for more than a decade feel comfortable reaching out for help.”

Such support structures have long been missing for thousands of women, including Noor.

Read more | Conversations about sexual wellness in India

Anushree elaborates that mental health issues, “are less discussed among women in India than PCOS and are not even associated with PCOS. Much attention is paid to physical symptoms, which are most important, weight gain and the inability to lose it. Therefore the focus of prevention against PCOS is mainly on weight loss through diet and exercise. As a result, the importance of sleep, stress management, and supplementation is either overlooked or not taken into account when improving your PCOS symptoms.”

come on everybody

Due to this rapidly changing discourse, PCOS Club India (@pcosclubindia), founded by Mumbai-based Nidhi Singh in 2019 while she was working for Deloitte, is leading India’s first PCOS summit.

Over the past two years, the community has garnered over 38,000 members as well as a following of over 33,500 people on Instagram. From the very beginning, Nidhi wanted PCOS Club India to promote a healthy and safe space for women, such as Dr. Minnie Malhotra, a certified functional medicine practitioner based in Texas, USA; Dr. Kanika Gupta from Orchid Hospital, New Delhi; and Dr. Navneet Selvan, a senior scientist at the Indian Council of Medical Research and founder of Thrus Healthcare, Chennai.

PCOS Club India partnered with Dr. Punith Kempegowda of the University of Birmingham, UK for the Blue Morpho research study, which focused on the hidden causes of PCOS on emotional well-being, body image concerns and difficulties women face during diagnosis and treatment. effects were discovered. Around 600 volunteers participated through PCOS Club India.

The summit, which will take place virtually on 18 and 19 September, will include various workshops and interactive seminars with doctors and holistic experts. Dr. Kempegowda will speak on the Blue Morpho study, Dr. Sheela Nambiar will talk about how healthcare practitioners can improve PCOS treatment routines, clinical nutritionist Vaibhav Garg will address the link between protein and PCOS, Dr. Piyush Janeja sets out to talk about how cannabidiol may be helpful in some PCOS regimens, and Dr. Manveer Bhatia, vice president of the Indian Sleep Society, will elaborate on the connection between PCOS and sleep. “We are also doing some fun sessions where people can socialize and dance,” says Nidhi.

Not wanting to turn the event into a medical conference, the fund turned down offers from pharmaceutical companies to sponsor it, instead partnering with doctors who had studied PCOS and various aspects of women’s health over the years. .

Influencer Dynamics

The growing conversation around PCOS has led to a lot of talk on social media; The hashtags #PCOSIndia, #PCOSIndianDiet, #PCOSIndiaAwareness have a hundred posts each – but not all of the alleged-nonsense is legit. Instagram, Facebook, Twitter and Clubhouse are a block-a-block with pseudoscience and a wave of ‘PCOS influencers’ providing lifestyle tips on how to cope with the disorder. Naturally, this has raised doubts, as a diet that works for one woman may not work for another.

Achita says, “There is definitely meaning in people sharing their journey to spread awareness and social media provides a platform to stigmatize health issues like PCOS. He who does not talk cannot be treated. While not all influential individuals may be qualified to offer clinical advice, they are able to add value in terms of being vulnerable about their life experiences.”

The idea of ​​a coach may not appeal to someone struggling with a lifestyle issue. This is why Anushree believes that a gynecologist and a coach can work in symbiosis for the long-term benefit of the patient-client. She stresses, “If doctors and coaches work together to help a patient with the help she needs, the chances of success are far greater than one or the other.” “Coaches need the support of medical professionals: first, to gain the confidence of those who may be suspicious of non-medical professionals in assisting with their diagnosis. Secondly, about options other than medication. Being aware and doing it all yourself. This will remove a barrier to entry.”

This is what Nidhi expects: a well-organized dialogue about PCOS with health practitioners in this less discussed space. She also hopes that over the next few months, more and more communities will learn more about how to better support women struggling with PCOS or become a ‘PCOS partner’.


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