Tag Archive for: PCOS

Behind the Science: Rx For Heterosex – An Interview with Thea Cacchioni

Interviewee: Dr. Thea Cacchioni | Authors/Editors: Romina Garcia de leon, Janielle Richards (Blog Co-coordinators)

Published: August 2, 2024

Can you tell us about your research?

My original research area critically engaged the diagnostic category of female sexual dysfunction. I was concerned that women’s problems were being over-medicalized. This was in the wake of Viagra, and there was a race among pharmaceutical companies to find a Viagra-like drug for women. Whereas Viagra was a drug that was discovered ‘accidentally’, every option tested for women was ineffective. In the meantime, scientists and doctors connected to the pharmaceutical industry were discussing how to define women’s sexual problems, particularly given that frigidity was no longer seen as an acceptable term.  As part of this research area, I interviewed women with sexual problems – I heard of some physiological reasons for difficulties, particularly in the case of sexual pain, but interpersonal, social and political reasons were overwhelmingly more common (such as past experiences of sexualized violence, partner dissatisfaction, and so on). It was also clear that there was a lot of misunderstanding around what constitutes ‘normal.’ I also testified at the US FDA against one particular desire drug that was denied twice and then eventually approved after a very clever public relations campaign accusing the FDA of sexism.  

A more recent area of research that is more personal to me is Polycystic Ovarian Syndrome (PCOS). As a gender studies professor, I find it to be quite fascinating that 4-10% of women globally have this diagnosis, yet there is such little public discussion about it. This is an area that is also of interest given that it’s related to the standards of femininity and successful heterosexuality in ways that are similar to my past area of research. PCOS includes symptoms such as hairiness, acne, infertility, and weight gain. These are all things that do not fall into a hetero-feminine norm. My research in PCOS involves doing in-depth interviews with individuals with PCOS. An interesting aspect of this sample is that out of 30, 15 people identify as queer, with 5 identifying as non-binary or trans. I’m interested in the way that experiences of PCOS may differ depending on gender and sexual identity. 

What led you to do this work?

I have lived experiences with PCOS. I’ve had the diagnosis for over 20 years, and I’m very familiar with how difficult it is to engage with medical professionals around this diagnosis. There’s a lot of misunderstanding or lack of awareness within the medical community, and that was part of my interest. My PCOS symptoms are mainly weight gain, irregular menstruation, and struggles with fertility. On top of this, I had an added distress because I felt like I wasn’t being a ‘good feminist’ for worrying about these things. This interested me. I think trends, theory and politics have helped me come to terms with this dichotomy I was experiencing. I also think that I’ve come further into body acceptance through body-positive movements that we’re seeing through fat activism.

Could you share any findings from your research?

One finding that I continue to see in the PCOS participants is that non-binary people show fewer signs of distress towards their symptoms and embrace them as part of their gender identity. I think the queer sample overall, had a lot more support in their relationships in terms of embodying these traits. There is less pressure in terms of fertility, and thinness, as well as acceptance of acne or weight gain. That’s not to say that you can’t be queer and feminine-identified or concerned with fertility or weight gain, of course. Another trend that I noticed was that distress over these symptoms was a sense of feminist consciousness (which I saw in both heterosexual and queer samples). Individuals with a positive relationship with their bodies because of their feminist consciousness had less symptom-related distress.  In terms of their experiences with the medical system –  most of them had pretty terrible experiences with doctors who would simply tell them to lose weight. However, it’s very hard to lose weight when you have PCOS. 

Another noticeable observation was that a lot of PCOS patients sought naturopathic remedies. This may be driven by the lack of support from their doctors. In sessions with naturopaths they can converse about their symptoms for longer periods and feel heard. A lot of people are turning to holistic medicine, and I think that’s something the medical profession has to address. In general, we see frustration with medicine, a tendency to rely on advice from naturopaths and influencers and so-called hormone experts. I think that it gives individuals a sense of control. Yet many times, these individuals will prescribe many supplements that have very little results.

Where do you hope this research will go in a couple of years?

I would love to expand my research to diverse people with PCOS. Although my study was diverse and had some diversity in terms of gender identity, I would like to take that further.  I would also like to look into the question of race, ethnicity, nationality, culture, religion, and how that may influence your experiences with PCOS. All of these factors may shape norms of sex, gender, and sexuality, all of which come into play when discussing PCOS and distress.

For instance, another problem with the medical approach is that it’s very connected to the body mass index (BMI). There are a lot of critiques of the BMI, and so I think that also that’s another point around where people with PCOS are losing proper care, because if it’s just centred on BMI, it can be misleading – you can be very muscular with PCOS and not fit within a healthy weight on the BMI. 

Where to read more about Dr. Cacchioni’s work? 

Book: “Big Pharma, Women and the Labour of Love”

Behind the Science: Politics of Women’s Hormonal Disorders

Authors: Alex Lukey and Arrthy Thayaparan (Blog Coordinators) || Interviewing: Shruti Buddhavarapu, B.A., M.A., University of British Columbia 

Published: August 27th, 2021

There is no single definition of polycystic ovarian syndrome, or PCOS. But what we do know is that this complex disease is one of the most common hormonal disorders in women of reproductive age.

In this month’s article for our Behind the Science Series, author and researcher Shruti Buddhavarapu discusses her master’s work on the medical and gender politics of PCOS in India.

How did you become interested in women’s health research? How did you decide to research PCOS in India?

I started showing PCOS symptoms around the age of 14-15 but it took another 10 years before I officially received a diagnosis. The journey from first noticing my symptoms to finally finding a method of managing the symptoms that aligned with my views was brutal. Women are constantly gaslit in the doctor’s office. We have to toe the line between trying to be “The Good Patient”, and fighting the condescension of a system that naturally distrusts our symptoms and our accounts of those symptoms. I was also hugely disappointed by the number of doctors who asked me to come back to them when I wanted kids—not if. It was as if PCOS only mattered because it threatened my ability to reproduce.

My research on PCOS uses critical discourse theory and analysis which have been important tools for me all through academia. This methodology looks at what the language we use tells us about the social context we’re in. It assesses the ways in which the words we use (consciously and unconsciously) create and maintain social inequalities and systems of power.

Now it seems natural that I’d apply those skills to expose the professional, political and personal networks that underpin an individual experience of a particular medical syndrome. 

How would you explain your research in simple terms?

My PCOS research studied the language and knowledge around illness and health. The paper I published in the Journal of Medical Humanities was a modified version of my Master’s research. I look at the lived experiences of folks with PCOS, especially in India. Which is to say, outside of medical discourse and doctor prescriptions, what does it mean to live with PCOS in the day-to-day? I wrote about how the lack of a known cause for PCOS allows for there to be convenient assumptions on womanhood and femaleness from those who benefit from patriarchy. It used to be common to tell women with PCOS that they invited the syndrome upon themselves due to a “Westernized lifestyle and diet.” I’ve heard this many times from doctors myself. Add to it the horror that women with PCOS may be infertile, which really threatens this nationalist idea of the pure, untarnished, un-Westernized and thus fertile and healthy Indian woman. This scare-mongering and moral policing of folks with PCOS serves no one. It focuses entirely on the wrong thing — the potential of women as mothers as opposed to individuals.

What do you think is the most important impact of your research?

Back in 2015, when I wanted to perform a critical discourse analysis of folks’ experiences with PCOS through their notion of femaleness/femininity, I was surprised to find a huge lack of material. Most academic writing on PCOS was medical with only a handful of sociological articles. So I was creating the literature I wanted to cite. I try to push the boundaries we take for granted in medical literature by bringing attention to the unrelenting but often invisible biases that are present in medicine. 

Why do you think we need to focus on women’s health in research?

I think there’s an urgent (mind you, it’s been long overdue, like centuries overdue) need for science and research to reflect the spectrum of a variety of lived experiences.

Basically, we need to democratize research. We need queer, non-binary, trans experiences to show up in our research, and we need them to be researchers. For too long, science has been the repository of colonial violence, centring a white, cis-male experience. Did you know that the Ferriman-Gallwey index (to measure hirsutism—a condition that results in “excessive, male-pattern” hair growth in women) was built on a caucasian model of “hairiness”? So for a long while, women of colour were judged on a scale that just didn’t factor in their genetic histories. 

Why is your work and women’s health research important and needed in India?

While PCOS is something that affects folks worldwide, India has one of the highest rates of the syndrome. There are ties linking this to the alarming rates of type 2 diabetes in India. (There is a close connection between PCOS and insulin resistance—often a precursor to diabetes.) 

In many ways, I want to say my research is important in India because this is where I live, and I cannot separate my location from my politics. But it also intuitively is where I need to be with my research because such a large population has PCOS in India. 

Did you face any challenges conducting your research or increasing awareness of your findings?

In my case, the biggest impediment to my research was the lack of previous research. But I knew this while going in, so I was prepared for it. 

Since one of my key arguments was that there was so little of it to go around (outside of scientific discussions), it only served my argument’s larger purpose. With my thesis, I wanted to say: “Here’s all the research we have so far. It is pitiful and has a history of being biased towards patriarchal ideas of womanhood. We need to change our language about PCOS to make it accessible to everyone, without bias.”

What are you working on now?

I recently published a creative non-fiction memoir about rootlessness, chronic illness and growing up and dating as a woman in urban India. It’s called “The Weight of a Cherry Blossom”. I’ve also been involved in a couple of pop-culture projects as a PCOS specialist/researcher—Buzzfeed, Mid-Day, Mumbai Mirror, Firstpost and A Sense of Place on Roundhouse Radio Vancouver. 

For Firstpost, for instance, I wrote a series of reimaginings of popular classics, such as Alice in Wonderland and Jane Eyre, where the protagonists have PCOS. It is tongue-in-cheek and irreverent but was a wonderful way to open conversation about PCOS. I would like to write more about the networks of chronic illness, capitalism and notions of productivity in the workplace. 

What makes you excited about the future in women’s health research?

That it’s changing! So radically, so exponentially, so determinedly. When I started research on PCOS in 2015, there was very little material in and outside of academia on the topic. Now, the number of youtube channels, IG accounts dedicated to illness discourse and women (always inclusive of trans folk) and non-binary folks’ health is so affirming. There’s so much more information coming from folks with lived experiences and women’s health researchers to the general public. 

Where would you like people to connect with you?

I’m happy to chat/connect on shrutirao1988@gmail.com or shrutirao.com!