This article explores the complex biological processes as well as the experiences of women who although coming from different cultural backgrounds, share the same medical diagnosis of PCOS. The author, in her mission to understand established information, also utilizes personal anecdotes to further relate to the complexity of this condition.

A Young, Indian Woman’s Perspective on PCOS.

Mahima Moses is currently 20 years old and a student of psychology and anthropology, has always been interested in exploring the experiences of women and their lived realities in an intersectional manner i.e. understanding of the female body and its interactions with society at large.

It is possible that in recent casual conversations with women, we’ve heard the term ‘PCOS’ being referred to. This term is either understood superficially amongst those in the conversation or if someone asks for a clarification; more often than not, the answer is stuttered back to the group using keywords like cysts on the ovaries, irregular periods, acne, weight gain, etc. It is evident that neither the person answering nor her acquaintances have completely understood the process or are too convinced about the seriousness of this issue.  This, however, is normal- a product of the lack of conversation and explanation about a condition that is becoming rapidly commonplace, or just a more prominent part of the conversation in largely urban and/or liberal spaces.

 

Personally, reading up on already established research and explanations given by reputed medical sources have often rendered me thoroughly overwhelmed regarding the sheer complexity of this condition that involves so many crucial body processes. I still found it incredibly difficult to process, comprehend and relate to. All of this, a struggle I am surely not alone in, further adds to this pre-existing haze and uncertainty about what PCOS actually is. 

 

Rather than a specific ‘disease’ which is a word often misattributed to PCOS- i.e. Polycystic Ovarian Syndrome, it is considered by many experts to be a ‘constellation of symptoms’ the causes of which are not 100% clear or understood. However, it is extremely clear that this is one of the most common hormonal problems experienced by young women in the world today. A quick mnemonic device that’s helped me in explaining and understanding the main characteristics PCOS is defined by is- ‘CIA’-

C-Cysts (in the ovaries)

I- Irregularity (in periods)

 

  1. Androgens (heightened levels of male hormones)

In order to truly understand what goes awry in a woman diagnosed with PCOS, it is essential to understand what a ‘normal’ menstrual cycle looks like. It is said to involve a complex series of interactions involving the brain and its hypothalamus and pituitary gland- both crucial components of the body’s endocrine system which is responsible for the creation and transmission of hormones in the body. From the hypothalamus, a hormone termed as ‘GnRH’ is released, which stimulates the pituitary gland to release two essential hormones that trigger the process of ovulation and menstruation in the female body. 

 

These hormones-  the FSH (follicle stimulating hormone) and LH (luteinizing hormone) then travel from the brain to the ovaries via the bloodstream, triggering the ovaries to release an egg which then travels to the uterus.  If fertilized by the sperm (i.e. the male reproductive cell that enters the female body in the event of sex), this egg stays in the uterus but if not, is shed along with the endometrium (the inner lining of the uterus) – resulting in a woman having her period. 

 

So what goes wrong with someone diagnosed with PCOS? The issue begins with the very first step in the process- irregularities in the release of GnRH in the brain which then impacts the levels of FSH and LH that are released. One of the main repercussions of this imbalance is that the ovaries now make more androgens- i.e. testosterone (the hormone related to masculinity) in the female body while the necessary female hormones that aid the menstrual and ovulation process are lacking, ultimately resulting in an inhibition of the crucial sequence of events that cause one to menstruate. It is due to these reasons that one diagnosed with PCOS has irregular periods, heightened levels of androgens and some, even experience infertility due to the unhealthy eggs produced by the ovaries as a repercussion of the cysts and hormonal imbalances. 

 

It is at this point that I would like to explicitly state that living with PCOS is hard. I am not a trained medical health professional, just a young woman who has lived with PCOS for the past four years. As mentioned before, reading medical information, similar to the one offered above can be a source of anxiety and confusion because in defining what the process is, in such technical terms, we often strip off the subjective, lived and real experiences and feelings that many women diagnosed with PCOS go through alone. PCOS has a negative impact on the mental well being of women and also has sociocultural implications. Particularly hard hit are young women (who are a large component of diagnosed cases) who live in a society that has set standards for what being feminine is and what a female body should externally look like. Although the processes involved in triggering PCOS might be internal, its repercussions manifest on the body visibly. So, what often initiates visits to the gynaecologist’s office is women experiencing clear aberrations in the functioning of their menstrual cycles and bodily features.

 

In my case, I began to miss my monthly period, to an extent where I went five months without one. When my period did arrive, I’d be in extreme pain, clutching the sides of my abdomen with a hot water bag on my lower back. All of this was accompanied with extreme nausea and exhaustion. I also noticed an increase in pimples and whiteheads on my face, an increase in hair fall- one stroke of the brush would pull out multiple strands of my hair. I also gradually noticed a layer of fat surrounding my abdomen that wasn’t present in my childhood years. My body was covered with hair- no amount of waxing was enough, and there was an increase in small brown spots all over my stomach and hair on my chest. I also wondered why the back of my neck and underarms were darker than the rest of my body- no amount of my mother’s skincare and whitening cures seemed to work.

 

In all this, I think it’s essential for us to acknowledge the impact these changes in our body from one that was recognizable to something now considered alien, have on our feelings. I remember being filled with an extreme loathing for my body and being particularly hard on myself because I didn’t look like other girls- in magazines or the ones near me.  Things that further exacerbated these negative feelings were conversations with my peers particularly with those from different cultures than my own. 

 

I used to be an international level sportsperson. I had teammates from all over India and Maharashtra (the state I live in) hailing from regions that were not particularly vocal about issues related to the female body. When I was first diagnosed, I remember telling my teammates about the issue because it very prominently affected my ability to play the game. Those who understood the gist of what I said, explained it to the others in hushed tones. The word ‘hormone’ was said in a very derogatory manner and I remember all of them looking back at me critically because of the ‘sexual’ connotation attached to my condition. This is representative of what a lot of people diagnosed with PCOS go through, be it with their family members, peers and immediate society as well as the number of people they have to converse with to get help. We are very often shamed and taught to internalize the blame attributed in the development of this malady- by healthcare professionals, our parents and other crucial figures in our lives. And it is this same punishment that we exercise on ourselves as we look in the mirror in frustration because no matter how hard we try, our weight just doesn’t reduce, we still get acne and are hairy and have to spend loads of money to rectify these bodily aberrations to pass of as conventional females in our society.

 

Something that aggravated my internal struggle was my lack of access (in these early stages of my interaction with PCOS) to a clear, credible and concise explanation of my condition. My experience with the diagnosis process left me flustered as I was told simply to lose 20 kilograms, after a quick check at the weighing scale and prescribed hormone medications which I dutifully consumed despite experiencing their negative side effects. I visited many professionals and in all these 7 minute interactions, the causes, impact and consequences of my diagnosed condition were left unexplained. In this, I completely understand that doctors may not have the time to get into in-depth lessons on the female body, particularly when there is a waiting room full of patients with several other complicated ailments, yet, who do we turn to if not for the experts in the field? If the answer lies in school and college educators, the unfortunate reality of the situation, in my experience,  is that the general conservatism of Indian society regarding topics labelled as ‘sexual’ seep into the textbooks and our teachers’ lesson plans as well. I recall my biology teacher completely glossing over the topic of sex and menstruation in my private, national board school. This experience immediately  caused me to ponder upon what the state of affairs regarding ‘sex education’ would be like in municipal or state run schools? 

 

This ultimately brings us to the socio-cultural impact and divide of having PCOS, particularly in societies that have an ambivalent relationship with any topics related to the female sexual body. For many, the day a young girl gets her first period is celebrated because she is now someone who is of reproductive age and can finally contribute to her future role as a woman by becoming a mother. After this, Indian women go through variations of how they are treated during their ‘time of the month’. It’s a topic to be hidden from male members of the household, pads covered with newspaper from the shop to its disposal, women being shunned out of certain duties and spaces in the household, and into their rooms. How then, do women who face complications with this already dicey area, cope with the pressures and attitudes of their immediate society? 

 

Research suggests that when it comes to class and lifestyle perspectives, it is often women from urban spaces that are more likely to develop PCOS than those from rural spaces. Many attribute this malady to a luxurious and sedentary lifestyle complete with stress which causes the body to react in this manner. This further amplifies the self-blaming cycle most women diagnosed subject themselves to. As stated in the beginning of this article, the causes in developing PCOS are not clear and there are various other uncontrollable factors such as one’s genetics that also impacts the development of this disorder.  

 

The need of the hour is evident. Most women go through their journey with PCOS alone, particularly in communities that silence all talk about women’s bodies. Speaking up and sharing our stories is step one in remedying the lack of conversation on this issue. The next essential step is that we build a community of people like us, who support, educate and motivate each other inclusively in coming to terms with our condition, working together to get and feel better. And we’ve begun. Let’s embark and face the hurdles coming our way on this journey, together.  

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