Posted by Prakriti Singh
“PCOS is like the classic story of a number of blind men, each able to touch just one part, trying to describe what an elephant must look like.”
This is how Thatcher describes polycystic ovarian syndrome (PCOS) in his book called PCOS: The Hidden Epidemic. The causes, the diagnosis, the symptoms or even the treatment, nothing in the case of this syndrome is well defined. When PCOS was first described in 1935 by American gynecologists Irving Stein, and Michael Leventhal, it was considered a rare disorder. Today as many as five million women in the United States may be affected, according to the Department of Health and Human Services, but researchers are still just beginning to uncover the disorder’s full impact.
“My experience of living with the syndrome for the last four years has been quite a ride because as I moved to different cities, my doctors changed and so did the course of treatment. For some doctors the disorder is genetic and for others, it’s because I take a lot of stress. There are also some who chose to not offer any information and just prescribed contraceptives to regulate my periods,” says a 24-year old who was diagnosed with PCOS when she was nineteen.
PCOS is the leading cause of female infertility and currently, there is no consensus on the diagnostic criteria for the syndrome. The National Institutes of Health (NIH) consensus criteria consist of a minimal finding of menstrual irregularity due to olio- or anovulation, evidence of hyperandrogenism, whether clinical (hirsutism, acne, or male pattern balding) or biochemical (high serum androgen concentrations) and exclusion of other causes of hyperandrogenism and menstrual irregularity (such as congenital adrenal hyperplasia, hyperprolactinemia, and androgen-secreting tumors).
Research shows that the treatment majorly revolves around maintaining the fertility of the woman and ignores both physical health consequences and the emotional impact.
But it is important to note that outside of these criteria, women with PCOS often experience other conditions that affect their short and long-term physical and mental health. Decreased quality of life from mood disturbances, decreased sexual satisfaction and weight gain have all been documented. Research shows that the treatment majorly revolves around maintaining the fertility of the woman and ignores both physical health consequences and the emotional impact. Patients are treated primarily on their symptoms even when current studies have shown that they need to be treated more holistically.
“Sometimes I wonder that had the norms defining the physical appearance of women been a little accommodative, my experience with PCOS would have been easier. The acne on my face has always bothered my gynaecologist much more than my mood swings,” says a 21-year old who was diagnosed with PCOS when she was fifteen.
PCOS and its concomitant symptoms make it difficult for women to attain acceptable displays of femininity and it’s just not the society that is concerned about this display but medical science too. The focus, in PCOS, is less on whether such a physical state is ‘healthy’ or not, but on the notion that the body falls outside what is deemed acceptable in terms of normative ideals of femininity. “In your own mind, you know that you are good, worthwhile and beautiful, but you are so much at odds with what is narrowly defined as beauty that you lose yourself in it,” says a 25-year old who I met on my recent visit to the gynaecologist.
The act of removing the hair, as much as the hair itself, is a continual reminder of the supposed lack of femininity. Words like ‘unfeminine’, ‘masculine’, ‘abnormal’ or ‘unnatural’ crop up over and over again when women talk about their body hair. “When I was diagnosed with PCOS, my gynaecologist prescribed me medicines to treat acne and I kept wondering if this was going to solve the underlying problem. I was never informed about the side effects, it was not conveyed that the medicine prescribed also causes depression”, says a 22-year old who was diagnosed with PCOS just three months ago.
It shouldn’t come as a surprise, though, that scientific methods and findings have been biased against women. For the longest time, women have not been participating in the process of knowledge production. UNESCO, the United Nations Educational, Scientific and Cultural Organization, which keeps global figures on women in science, estimates that in 2013 just a little more than a quarter of all researchers in the world, were women. In North America and Western Europe, female researchers were 32 percent of the population. In Ethiopia, the proportion of female researchers was only 13 percent. Such statistics are coherent with the Natural Sciences’ inability in getting rid of the gender stereotypes that the society has been fostering for centuries.
One must question why all the terms used for the menstrual phases in women evoke negative images. ‘Endometrial loss,’ ‘regression in size,’ and ‘failure of the anterior pituitary gland’ are definitely not neutral terms; rather they convey failure and dissolution. Pregnancy is considered the norm or the focal point, and hence all the other stages of the menstrual cycle take a backstage and are treated accordingly. If lack of endometrium in the menstrual phase had been the norm, for example, then the discourse would not have contained a view of it as a loss. Rather, the ovulatory phase and pregnancy could have been expressed as possessing excessive endometrial material.
Obstetric and gynecologic definitions of the “normal healthy woman” in the 1950s played upon the specific social concepts of ‘femininity,’ reproduction and mothering. Gynaecologists defined the normal and abnormal of a woman and that definition then was projected as technical and value-free. Once articulated, these medical and technical conceptualizations of women were then used as resources themselves in order to argue that the reproductive state was the criterion of normality for women. These medical practitioners regarded themselves as guardians of family values and protectors of social order. They were attempting to define what the normal healthy woman should be and it is not surprising that she was what they wanted her to be and what society wanted her to be. Things have not really changed much since then.
it is important to note that outside of these criteria, women with PCOS often experience other conditions that affect their short and long-term physical and mental health.
According to the non-profit support organization, PCOS Challenge, Inc., PCOS awareness and support organizations receive less than 0.1% of the government, corporate, foundation, and community funding that other health conditions receive. Also, only a small number of researchers receive funding to study PCOS and most of the money goes toward studying the infertility aspects of the disorder.
The mental health of women living with PCOS is at stake not only because of the pathophysiological causes but more because of the imposed burden of femininity that they have to live with. Gretchen Kubacky, a health psychologist who also has PCOS, says that the condition has a significant impact on the mental health of her clients on both at the situational and the chemical level. With the diagnosis of any disorder, disease, or syndrome it is reasonable to say that a patient may have anxiety. But there is an added anxiety with PCOS that is the most attributable to hirsutism, irregular menses, and infertility.
A study that interviewed 30 women with PCOS found out that the three most troublesome problems for them were excess hair growth, irregular menses, and infertility. All three of these characteristics were areas women described as what they defined as being feminine and, as a result of PCOS, they felt robbed of their female identity. PCOS primarily is being treated as an infertility disorder or a cosmetic annoyance even though it needs to be treated as a metabolic disorder that has serious long term health concerns.
Also read in Hindi: महिलाओं का पीसीओएस की समस्या को अनदेखा करना ख़तरनाक है
Prakriti is pursuing her masters in Media and Cultural Studies from Tata Institute of Social Sciences, Mumbai. Prior to that, she worked as a Senior Content Developer for NIIT Ltd for two years. Prakriti holds a B Sc. in Zoology from Hansraj College, University of Delhi. You can follow her on LinkedIn.
A version of this article was previously published in the Economic and Political Weekly on 1st June, 2019.
Featured Image Credits: Marian Hukom