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My Tryst With PCOS: I Refused To Let It Clip My Wings

This post is a part of Periodपाठ, a campaign by Youth Ki Awaaz in collaboration with WSSCC to highlight the need for better menstrual hygiene management in India. Click here to find out more.

The first time I went to a gynecologist, I had no idea what to expect. I got my periods very late in life, and even then, they were never very regular. When they refused to stabilise for over a couple of years, my mother finally decided it was time to take me to the gynecologist. I grew up inside a prominent university campus in a major metro city, and hospital facilities came attached. This means that the gynecologist that I went to also served hundreds of young women who were just exiting their teens and entering their twenties; a time where we all need gynecological help.

My first visit to the gynecologist was uneventful. The gynecologist seemed skeptical because I had none of the telltale signs of Polycystic Ovarian Syndrome (PCOS). I hadn’t put on spectacular amounts of weight, I hadn’t grown a lot of body hair, I did not have periods that were extremely painful, and I did not bleed too much or too little. She listened to what my mother and I had to say, told us that it was probably nothing, and prescribed vitamins. As an afterthought, she told us to get a sonography done.

This is when things took a bizarre turn. When I went to collect the report from the sonography doctor, she quietly handed it over to us. My mum asked her if I had ovarian cysts, but she refused to say anything. After that weirdly stoic interaction, we went back to our gynecologist who then confirmed that I indeed had ovarian cysts. She told me that I was mostly infertile and that I would have trouble conceiving. She made sure, however, to reassure me that with the right hormonal treatment, it would be difficult but not impossible to have a baby.

I was a 15-year-old at that time and the news meant nothing to me. I was least concerned about having a baby, and as I grew older, I realised that this was a blessing. The one thing that I would not have to worry about when I had sex was that I would become pregnant. This did not take away the need for using condoms, but it did make me a little more comfortable with the idea of having sex.

Mentally, I wouldn’t have to deal with the shame and stigma associated with becoming pregnant out of wedlock (even with the most supportive parents in the world), and physically, I would be spared the whole process of finding an abortion clinic and doctor who is non-judgmental, and putting my body through the actual abortion. I also realised that this meant that no one would ever be able to put pressure on me to get pregnant, neither parents and parents-in-law who might have been keen to become grandparents, nor a partner eager to have a child.

My body would never have to go through the trauma of childbirth, not unless I put myself through rounds and rounds of often dehumanising fertility treatment. The icing on the cake was that I got my periods once in 3-4 months, and it’s just been very convenient overall. I loved my PCOS, and barring the ‘specter’ of weight gain, I read it as having an overall positive impact. I was quite casual and nonchalant about it and made sure to slip it into conversation whenever I was able to be serious with someone.

Generally, when a woman is diagnosed with PCOS, it is seen as a huge problem. And for many of us, it can be. PCOS can lead to a lot of weight gain, growth of thick hair on the face and other body parts, and all sorts of hormonal imbalances. If we stopped body shaming women, whether for their body hair or their weight, PCOS would become nothing more than a routine hormonal problem to which a solution needed to be found.

Yet, the narrative around PCOS and menstruation is more focused on fertility than anything else. What is important is not to mitigate the symptoms we suffer from, but to ensure that our condition does not make us infertile, because our bodies would be no good them. The focus, yet again, is on our appearance and our ability to have children. Our bodies are reduced to mere instruments, and our mental well being is secondary to the function that society expects us to serve.

My own reading of my PCOS is completely at odds with the way other people look at me. Every time I (gleefully) tell someone that I am infertile, I am always told, “Oh I’m so sorry”, or “Oh, it doesn’t make you less of a woman” and I’m always taken aback. Why would someone assume that a person unable to conceive would necessarily be unhappy about it, or worse, feel inadequate? I always explain to people that I looked at it as a positive thing, and then it is their turn to be taken aback. Don’t necessarily assume that a person with PCOS or a person who is infertile is sad or heartbroken about it!

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An ambassador and trained facilitator under Eco Femme (a social enterprise working towards menstrual health in south India), Sanjina is also an active member of the MHM Collective- India and Menstrual Health Alliance- India. She has conducted Menstrual Health sessions in multiple government schools adopted by Rotary District 3240 as part of their WinS project in rural Bengal. She has also delivered training of trainers on SRHR, gender, sexuality and Menstruation for Tomorrow’s Foundation, Vikramshila Education Resource Society, Nirdhan trust and Micro Finance, Tollygunj Women In Need, Paint It Red in Kolkata.

Now as an MH Fellow with YKA, she’s expanding her impressive scope of work further by launching a campaign to facilitate the process of ensuring better menstrual health and SRH services for women residing in correctional homes in West Bengal. The campaign will entail an independent study to take stalk of the present conditions of MHM in correctional homes across the state and use its findings to build public support and political will to take the necessary action.

Saurabh has been associated with YKA as a user and has consistently been writing on the issue MHM and its intersectionality with other issues in the society. Now as an MHM Fellow with YKA, he’s launched the Right to Period campaign, which aims to ensure proper execution of MHM guidelines in Delhi’s schools.

The long-term aim of the campaign is to develop an open culture where menstruation is not treated as a taboo. The campaign also seeks to hold the schools accountable for their responsibilities as an important component in the implementation of MHM policies by making adequate sanitation infrastructure and knowledge of MHM available in school premises.

Read more about his campaign.

Harshita is a psychologist and works to support people with mental health issues, particularly adolescents who are survivors of violence. Associated with the Azadi Foundation in UP, Harshita became an MHM Fellow with YKA, with the aim of promoting better menstrual health.

Her campaign #MeriMarzi aims to promote menstrual health and wellness, hygiene and facilities for female sex workers in UP. She says, “Knowledge about natural body processes is a very basic human right. And for individuals whose occupation is providing sexual services, it becomes even more important.”

Meri Marzi aims to ensure sensitised, non-discriminatory health workers for the needs of female sex workers in the Suraksha Clinics under the UPSACS (Uttar Pradesh State AIDS Control Society) program by creating more dialogues and garnering public support for the cause of sex workers’ menstrual rights. The campaign will also ensure interventions with sex workers to clear misconceptions around overall hygiene management to ensure that results flow both ways.

Read more about her campaign.

MH Fellow Sabna comes with significant experience working with a range of development issues. A co-founder of Project Sakhi Saheli, which aims to combat period poverty and break menstrual taboos, Sabna has, in the past, worked on the issue of menstruation in urban slums of Delhi with women and adolescent girls. She and her team also released MenstraBook, with menstrastories and organised Menstra Tlk in the Delhi School of Social Work to create more conversations on menstruation.

With YKA MHM Fellow Vineet, Sabna launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society. As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

Read more about her campaign. 

A student from Delhi School of Social work, Vineet is a part of Project Sakhi Saheli, an initiative by the students of Delhi school of Social Work to create awareness on Menstrual Health and combat Period Poverty. Along with MHM Action Fellow Sabna, Vineet launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society.

As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

Find out more about the campaign here.

A native of Bhagalpur district – Bihar, Shalini Jha believes in equal rights for all genders and wants to work for a gender-equal and just society. In the past she’s had a year-long association as a community leader with Haiyya: Organise for Action’s Health Over Stigma campaign. She’s pursuing a Master’s in Literature with Ambedkar University, Delhi and as an MHM Fellow with YKA, recently launched ‘Project अल्हड़ (Alharh)’.

She says, “Bihar is ranked the lowest in India’s SDG Index 2019 for India. Hygienic and comfortable menstruation is a basic human right and sustainable development cannot be ensured if menstruators are deprived of their basic rights.” Project अल्हड़ (Alharh) aims to create a robust sensitised community in Bhagalpur to collectively spread awareness, break the taboo, debunk myths and initiate fearless conversations around menstruation. The campaign aims to reach at least 6000 adolescent girls from government and private schools in Baghalpur district in 2020.

Read more about the campaign here.

A psychologist and co-founder of a mental health NGO called Customize Cognition, Ritika forayed into the space of menstrual health and hygiene, sexual and reproductive healthcare and rights and gender equality as an MHM Fellow with YKA. She says, “The experience of working on MHM/SRHR and gender equality has been an enriching and eye-opening experience. I have learned what’s beneath the surface of the issue, be it awareness, lack of resources or disregard for trans men, who also menstruate.”

The Transmen-ses campaign aims to tackle the issue of silence and disregard for trans men’s menstruation needs, by mobilising gender sensitive health professionals and gender neutral restrooms in Lucknow.

Read more about the campaign here.

A Computer Science engineer by education, Nitisha started her career in the corporate sector, before realising she wanted to work in the development and social justice space. Since then, she has worked with Teach For India and Care India and is from the founding batch of Indian School of Development Management (ISDM), a one of its kind organisation creating leaders for the development sector through its experiential learning post graduate program.

As a Youth Ki Awaaz Menstrual Health Fellow, Nitisha has started Let’s Talk Period, a campaign to mobilise young people to switch to sustainable period products. She says, “80 lakh women in Delhi use non-biodegradable sanitary products, generate 3000 tonnes of menstrual waste, that takes 500-800 years to decompose; which in turn contributes to the health issues of all menstruators, increased burden of waste management on the city and harmful living environment for all citizens.

Let’s Talk Period aims to change this by

Find out more about her campaign here.

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A former Assistant Secretary with the Ministry of Women and Child Development in West Bengal for three months, Lakshmi Bhavya has been championing the cause of menstrual hygiene in her district. By associating herself with the Lalana Campaign, a holistic menstrual hygiene awareness campaign which is conducted by the Anahat NGO, Lakshmi has been slowly breaking taboos when it comes to periods and menstrual hygiene.

A Gender Rights Activist working with the tribal and marginalized communities in india, Srilekha is a PhD scholar working on understanding body and sexuality among tribal girls, to fill the gaps in research around indigenous women and their stories. Srilekha has worked extensively at the grassroots level with community based organisations, through several advocacy initiatives around Gender, Mental Health, Menstrual Hygiene and Sexual and Reproductive Health Rights (SRHR) for the indigenous in Jharkhand, over the last 6 years.

Srilekha has also contributed to sustainable livelihood projects and legal aid programs for survivors of sex trafficking. She has been conducting research based programs on maternal health, mental health, gender based violence, sex and sexuality. Her interest lies in conducting workshops for young people on life skills, feminism, gender and sexuality, trauma, resilience and interpersonal relationships.

A Guwahati-based college student pursuing her Masters in Tata Institute of Social Sciences, Bidisha started the #BleedwithDignity campaign on the technology platform Change.org, demanding that the Government of Assam install
biodegradable sanitary pad vending machines in all government schools across the state. Her petition on Change.org has already gathered support from over 90000 people and continues to grow.

Bidisha was selected in Change.org’s flagship program ‘She Creates Change’ having run successful online advocacy
campaigns, which were widely recognised. Through the #BleedwithDignity campaign; she organised and celebrated World Menstrual Hygiene Day, 2019 in Guwahati, Assam by hosting a wall mural by collaborating with local organisations. The initiative was widely covered by national and local media, and the mural was later inaugurated by the event’s chief guest Commissioner of Guwahati Municipal Corporation (GMC) Debeswar Malakar, IAS.

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