Missing Indian Bodies in the Medical Research on Polycystic Ovary Syndrome

Author: Maitreyi Redkar
Editor: Shashank Deora

23/09/2024 | Reflections
 

The genesis of the gendered biochemistry

Women are increasingly making significant strides in the medical field, moving beyond the growing presence of female doctors to championing gender-specific research. This advocacy is not just a plea for equality but a critical demand for accuracy and safety in medical science, ensuring that healthcare solutions are effectively tailored for all.

Modern medical research has systematically overlooked the health needs and biological differences of women. Until 1993, the National Institutes of Health (NIH) of the United States of America, a leader in modern medical research, excluded women of ‘child-bearing age’ in clinical trials by dismissing the need to understand the complexities of their fluctuating hormones. This male-centric bias in research design still endangers women by assuming their bodies respond to diseases and medications in the same way as men’s. This contributes to a significant lack of clarity regarding the functioning of women's bodies, what is normal or abnormal, and how women experience medical conditions.

One such abnormal condition is the Polycystic Ovary Syndrome (PCOS). PCOS shatters the feminine identity with its masculine signs manifested through male-typical facial and body hair growth and male-pattern baldness. Beyond the medically observable signs of irregular menstruation, severe acne, darkening of the skin, excess facial and body hair, scalp hair loss, and weight gain, this endocrinal condition is associated with severe health issues like diabetes, cardiovascular diseases, cancer, and infertility. While medical research has identified critical physiological markers of PCOS like cystic ovaries, increased androgen levels, and irregular or absent ovulation, it overlooked integrating the lived bodily experiences of women with this condition. The research on PCOS is fixated on biochemical and physiological aspects, neglecting its holistic and phenomenological impacts on women’s lives.

 
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This limited attention to the impact of PCOS is characteristic of the inherent gender bias in the medical system. This bias can be observed from the fact that women who approach the emergency department for acute abdominal pain are less likely and significantly delayed in receiving painkillers, while men get painkillers like morphine by ambulance services while being transported to the hospital. Despite chronic pain being experienced more in women, they are sedated and referred to the psychiatric wards. The gender bias is further demonstrated by the concentration of research funding on conditions that affect men or both men and women rather than issues specific to women.

The absence of focus on women-specific medical issues is reflected in the World Health Organization (WHO) reports, which note that nearly 70% of women with PCOS remain unaware of their condition. The current prevalence estimation of PCOS is based only on one-fifth of the total affected women who become aware of their condition. Thus, there is a significant concern about the under-reporting and an incomplete understanding of the true scope of PCOS.
 

The theoretical roots of the gender bias in medical science

The exclusion of women from medical research stems partly from sociological constructs of the body-mind dichotomy. This masculinized conceptual segregation devalues bodily experiences, marginalizing women's bodies. Feminist theorist Simone de Beauvoir argues in the book The Second Sex that women have historically been objectified and devalued, rendering them the Other. Similarly, in her book Volatile Bodies, Elizabeth Grosz highlights how this dichotomy privileges the rational mind over the corporeal feminine body, failing to acknowledge the lived realities of bodily experiences.
 

Culturally insensitive measures and treatment of PCOS

Even among women, much of the PCOS-related research has been conducted on the physiology of white Caucasian women without adequate representation of women of colour. Here, I focus on the Indian experience of PCOS, alluding to the cultural insensitivity in medical research. Globally, one in every ten women is estimated to have PCOS, while in India, the prevalence rises to one in every five women. The absence of Indian women in PCOS-related research is noticeable in PCOS diagnostic criteria such as hirsutism (excessive hair growth) and hip-waist ratio. These indicators, representing androgen excess in women, often fail to apply to Indian women. Indian women have more body hair, and the notion of demonizing excessive hair seemed to be a part of an anti-immigrant reaction in the USA. The persistent body image and low self-esteem in PCOS women arise from the enforcement of white beauty standards, which are characterized by specific body types, hair, and skin textures. This marginalizes other beauty patterns, labelling anything outside Eurocentric ideals as abnormal, which contributes to the increasing risk of developing mental health disorders.

Other diagnostic issues, like weight gain, are also not culturally sensitive. The unequal distribution of food grains during colonial times led to widespread starvation, and for survival, the Indian body adapted to store fat rather than burn it off easily. The survival mechanism influences fat deposition patterns, which is particularly pronounced in women with PCOS. Therefore, using fat ratio as a variable to indicate metabolic issues only adds to the problem.
 

Impacts on Indian women

It is no wonder that women with PCOS feel misunderstood, and their concerns are invalidated. Indian women feel a deep dissatisfaction with medical services, compounding the struggle of managing PCOS. Medical doctors bombard patients with negligent advice, such as promoting laser therapy as a hair removal technique to manage hirsutism. In reality, most laser treatment centres actively refuse to treat women with PCOS due to the notoriously poor success rate. Furthermore, the severity of PCOS symptoms is oversimplified into a binary diagnosis, neglecting the spectrum of severity. This leaves women with milder symptoms mentally vulnerable, worrying over the possibly exaggerated infertility fears.

Due to the fragmented medical services in India, the endocrinal condition of PCOS is still being treated by gynaecologists due to its menstrual symptoms. Gynaecology's primary focus on fertility often results in a treatment approach centred on prescribing Oral Contraceptive Pills and Metformin, which do regulate the menstrual cycle, but there is no counselling about the side effects. The hormonally induced aggression and anger are dismissed, forcing women to cope alone. This neglect severely damages their self-esteem and mental health, with lasting consequences.

Research on PCOS primarily focuses on physical symptoms and observable behavior, but it fails to understand the various emotions and thoughts constituting consciousness, which is inherently tied to a physical body. By attending to the unique materiality and lived experiences of women's bodies with PCOS and other such medical conditions, medical science can move towards a more inclusive and comprehensive understanding of health and disease, ultimately improving the quality of care for all women.
 
Maitreyi Redkar is pursuing PhD from the Indian Institute of Technology Bombay in Mumbai, India. Her research focuses on the psychological impact of hormonal disorders, specifically PCOS.
 
 



Published: 09/23/2024