PMS, PCOS and More!

cwbministry.ashoka
6 min readDec 27, 2020

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Sonal is a Menstrual Health advocate who lives with PCOS (Polycystic Ovarian Syndrome) and PMDD (Premenstrual Dysphoric Disorder). They are an alumnus of YIF batch 2014 and have worked with fellows and undergraduates across batches on projects relating to sustainability, art, research and design. They are also the head curator at F of X festival, an annual 4 day festival in India designed for creative professionals. Sonal actively blogs about PCOS and PMDD on her Instagram @sonalsethiya and can be reached at sonal@boondh.co Hear them talk about Boondh’s work at a talk delivered at Laureate Global here.

  1. Tell us a little bit about Boondh, your journey with the organisation, and the projects undertaken by Boondh.

Boondh is a Bangalore-based social enterprise working in menstrual health along the verticals of literacy, advocacy, activism and sustainable products. Our work — of building menstrual life skills among menstruators across socio-cultural strata — is informed by an intersectional feminist, culturally sensitive, multi-stakeholder and informed choice approach. Alongside direct engagement with menstruators, we are focussed on capacity building through Trainings of Trainers (ToTs) and building open-source resources to empower folx to impart these life skills within their own communities.

I joined Boondh as a cofounder in 2017. I was facilitating projects on (SDG5) Gender Equality and (SDG 12) Responsible Consumption & Production for World Merit (UK) when I met Bharti, founder of Boondh. The year before, in 2015, I had helped 100 women to switch to menstrual cups and I wanted to work on it full time — making cups more affordable and accessible, and using them as a conversation starter to talk about anatomy, agency and menstrual health disorders — some of which I also did during my time at the YIF in 2014!

Thus far, we have engaged with communities ranging from farmers in Maharashtra to school children in Himachal Pradesh to athletes in Manipur to prisoners in Mysore to menstruators in urban workplaces. Boondh also curates India’s first travelling art exhibition The Crimson Wave, which channels art created with menstrual blood and to normalise menstruation into menstrual activism. Our Campus Catalyst program engages Student Ambassadors to initiate social change on campuses (Ashni Acharya from Ashoka was a part of our first cohort!). We’ve had the opportunity to advocate for better menstrual & environmental rights at the UN Environment Assembly in Kenya, as a part of Women's’ Major Group. Through our Together Cup program, we share the economic privilege of our customers with menstruators in disadvantaged communities who need support.

We are currently running two campaigns — #Period &Patrakaars and #StopPeriodPenalty.

#PeriodandPatrakaars is a campaign that aims to address and improve the reportage of menstruation in the mainstream media. The objective will be met by enabling the writers with media guidelines or recommendations that are based on research and community (menstruators) inputs.

#STOPPeriodPenalty is a campaign that encourages stakeholders to establish interventions and redressal mechanisms to address menstrual exclusion and discrimination in India. Screening several instances of menstrual discrimination and exclusion across India and collaborating needs-based interventions with local and state authorities.

Produced by Young India Fellows Ajita, Raashi, and Subhayan — Class of 2018

2. What is PCOS and PMDD? How do they impact menstruators?

PCOS (Poly-cystic Ovarian Syndrome) is a hormonal disorder that could be caused by multiple reasons, most common being insulin resistance, inflammation caused by gluten, excessive androgens or (Oral Contraceptive) pill-induced PCOS. Some of the common symptoms of PCOS include obesity, difficulty in losing weight, hair loss/ thinning of hair, hirsutism, irregular periods, oily skin etc. PCOS has no cure as such but it can be managed by a change in lifestyle and taking supplements. There is now research showing that going dairy-free and gluten-free helps increase insulin sensitivity and supplements such as Vit D, Inositol and Metformin help in managing food cravings. Low-intensity workouts and leading a stress- free life helps in managing hormonal balance better as well. Varying research shows that 1 or 2 in every 5 menstruators are likely to have PCOS to some extent and should take the necessary steps to manage it.

I was hospitalized during my YIF program because of PCOS and as my period arrived several months late and was extremely painful (I have always had dysmenorrhea) and my blood pressure was very low. In rare cases of extreme blood loss, a blood transfusion might also be required. If you are someone who experiences menstrual cramps that disrupt your everyday activity, please consider discussing it with your healthcare provider and do not hesitate to request a strong painkiller such as Ketorolac injections when necessary. Dismissal of women’s pain (and that of trans men, non-binary folks) is a reality we must challenge and overcome.

PMDD (Premenstrual Dysphoric Disorder) is a mood (mental health) disorder characterised by extreme mood disturbances and physical symptoms before the onset of one’s menstrual period. It causes significant mental distress and interferes with work/ school and relationships. It is distinguishable by the dysphoria that is experienced. Feelings of being completely overwhelmed, spiraling thoughts, mood swings, depression, outrage, anger, frustration, anxiety, and suicidal ideation coupled with the physical symptoms, which can include, bloating, tender breasts, cramps, lower back pain, lethargy, and sleep and appetite changes. One can document their PMS (Premenstrual Syndrome) symptoms for 3–4 months and discuss it with a psychiatrist to be diagnosed. PMDD is usually treated after ruling out other mental health disorders such as depression, borderline personality disorders, etc. to eliminate cases of PME (Premenstrual Exacerbations). It is treated with a combination of antidepressants (SSRI or SNRI) along with psychotherapy and lifestyle changes. IAPMD.org is a resource I’d recommend to learn more. About 2–5% of the menstruating population is likely to live with PMDD.

PMDD is essentially a cellular disorder where our body is extremely sensitive to changes in hormones. In my experience, the mood swings and depressions were debilitating. To experience six intense emotions in an hour’s time, have unwarranted crying spells and suicide ideation have been prominent indicators for the need to seek help. People with PMDD often meet with gaslighting by gynecologists and family who are unaware of the severity of conditions. If you or someone you know is experiencing ‘severe PMS’ I’d urge you to seek professional psychiatric help. Please note that this disorder was recognized by the mental health fraternity as recently as 2014 and some psychiatrists may require a reminder.

3. What can we do to support those experiencing PMDD or PCOS?

In both these cases, it is important to ask the person living with these conditions about what their needs are and how they would like to be supported. You could share research and available helplines if they are open to working together on it. Do not share ‘articles’ or information unsolicited by the patient. Do not try to explain their emotions to them.

In case of PCOS, support your person’s choice of diet (dairy-free, gluten-free), exercise and other coping mechanisms. Become an accountability buddy and help with reminders and planning necessary (stress-busting, low-intensity workout) activities as dates/ hang out sessions. Accompany them to medical check-ups if they are comfortable. Affirmations about body image and gender can be helpful.

Incase of PMDD, it is important to understand that the person with PMDD could be under immense mental distress and might need to prioritize themselves in those moments/ phases. It is best to have a conversation with them before their PMDD phase (during their follicular phase) about how you can support them — with physical comfort, food, gentle reminders etc. It is important to track the person’s period and be supportive at the onset of the luteal phase and offer help in everyday tasks to free their time (to focus on mental state/well-being) if the person is comfortable with it. Affirmations about self-worth, grounding practices and compassion are helpful.

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