-By Isha Puntambekar
In addition to being the most common endocrine disorder in women of reproductive age, Polycystic ovary syndrome is a deeply stigmatizing condition. The incidence of PCOS has been rising world over, contributing to the economic and health burden of the disorder. The global prevalence of PCOS is unknown due to a lack of comparative data but it is estimated to affect nearly 10 million women across the world. In India, data from an AIMS study shows that 20 to 25% of Indian women in the reproductive age group suffer from this disorder. The pandemic has only made a bad situation worse due to the enforced sedentary lifestyle and irregular health check-ups.
Although the pathology of PCOS remains largely unclear, the disorder is characterized by 3 major features; hyperandrogenism, ovulatory dysfunction and polycystic ovaries. Ovaries, present on either side of the uterus, form an important part of the female reproductive system. Normally functioning ovaries are responsible for the production of female reproductive hormones estrogen and progesterone as well as the release of a single oocyte or egg during each menstrual cycle in a process called ovulation.
In PCOS, the ovaries produce an abnormally large amount of androgens. Androgens are considered to be male sex hormones and are only present in small quantities in women. This hormonal imbalance interferes with healthy menstruation and ovulation. The ovaries contain a number of follicles inside which the egg normally develops. In PCOS, the follicles are unable to develop and release the matured egg, instead turning into fluid-filled sacs or cysts.
Common Features of PCOS
1. Irregular or absent menstruation:
Due to the aforementioned hormonal imbalances, women with PCOS may have fewer or irregular periods in a condition called amenorrhea. At times, menstruation may be completely absent in a condition called oligomenorrhea.
In combination with disturbed menstruation, ovulation in PCOS may be irregular or completely absent (anovulation), making it difficult for the patient to conceive. This is known as anovulatory infertility. Menstrual disturbances in PCOS also run the risk of abnormal thickening of the wall of the uterus or the endometrium, which can also induce infertility. Thus, PCOS is one of the most common causes of infertility in women.
Hirsutism is a common clinical presentation of hyperandrogenism. It refers to the excessive growth of course hair in androgen dependent areas including upper lip, chin, chest, back, abdomen, arms and thighs (regions where men usually have hair).
Hyperandrogenism in PCOS is also correlated to presence of acne on face, neck, chest and upper back. Excess androgen causes abnormal production of sebum which then accumulates in the hair follicles, leading to acne.
5. Insulin resistance
Many patients with PCOS are found to have insulin resistance. Insulin is a hormone produced by the pancreas, responsible for the regulation of blood glucose level. Insulin resistance refers to a condition wherein the body is unable to use the insulin effectively. In an effort to overcome this, the body produces higher levels of insulin, which in turn increases the production and activity of other hormones such as androgen and testosterone.
PCOS is also associated with weight gain, especially around the abdomen as well as difficulty losing weight. While the exact cause of obesity is not well understood, it is believed that high testosterone levels in the body promote abdominal obesity, which in turn leads to insulin resistance. Increased insulin levels stimulate hormone production and further increase testosterone activity, thereby making it a vicious cycle.
PCOS also increases the risk for developing other disorders like type 2 diabetes, hypertension, unhealthy cholesterol, heart diseases and strokes. Irregular menstruation and anovulation increase the risks of endometrial cancer. In addition to the medical complications associated with the disorder, PCOS has an adverse impact on psychological functioning and quality of life of the patients.
Currently, there is no known cure for PCOS. The treatment of the disorder is limited to symptom management and the strategies employed differ based on clinical presentations of the disorder. The frustration of being diagnosed with a disorder as complex as this and having to live with its manifold symptoms can be a major source of psychological distress in some women. A growing body of literature suggests that there is a higher incidence of anxiety and depression in women with PCOS compared to the general population. Eating disorders including anorexia, bulimia and binge eating are also found to be correlated to PCOS. It is understood that body image distress or dissatisfaction may be a mediating factor between PCOS and the aforementioned psychological disorders.
Body image may be defined as an attitude about one’s physical appearance or bodily functioning. It includes the subjective experience and perception of one’s body size, competence and attractiveness. Body image is an important component of one’s self-concept. Owing to the physical manifestations of PCOS in hirsutism, acne and obesity, patients express greater body image distress and dissatisfaction.
A cross-sectional study showed higher body image distress scores in women with PCOS when compared to controls, along with a greater difference between ideal and perceived body images. Negative body image and weight preoccupation due to obesity contributes to depression in women with PCOS. Hirsutism and acne can also be very upsetting, leading women to perceive themselves as less feminine, less sexually attractive and even freakish.
Women with PCOS were found more likely to report disliking their physique and the way clothes fit them. The worry that others would not consider them good looking and a constant need to do something about their appearance may also lead to depression. This disorder is prevalent in the reproductive age group, a period of time also associated with an increased interest in finding a partner. An increased self-consciousness resulting from a negative body image may interfere with dating and other social activities, becoming a significant source of anxiety.
Studies on sexual functioning show that concerns with perceived sexual attractiveness may be manifested in sexual discomfort, disinterest and an overall unhappier sex life. Women were also found to believe that their partners were no longer as sexually attracted to them and consequently dissatisfied. Hirsutism especially was found to be associated with negative sexual self-esteem. In a world where female identity is still indelibly linked with motherhood, menstrual irregularity and difficulty conceiving becomes yet another source of psychological distress. Women shackled with these archaic notions of femininity may develop a diminished sense of self-worth at their body’s perceived failure to bear children. This distress is further exacerbated in cultures where childbearing directly influences women’s social status.
Based on a study on women’s subjective experiences of PCOS, some of the common patient complaints included inadequate information, delayed diagnosis and the refusal of their healthcare providers to take their symptoms seriously. Another survey showed that many women with PCOS tend to distrust the judgements of their primary healthcare physician and report being dissatisfied with their medical experience due to a general lack of support. There is a long and sordid history of women’s health concerns being dismissed, undermined or misdiagnosed by medical practitioners. Sasha Ottey, the founder of an Atlanta based PCOS advocacy group has aptly dubbed it ‘health-care gaslighting’. As if the gender bias isn’t bad enough, with nearly 50 to 70% of women with PCOS struggling with weight gain, they are often subjected to a weight bias at the hands of their healthcare providers. While weight loss in PCOS is in fact associated with a better prognosis, it is easier said than done. In any case, weight certainly should not be grounds for discrimination and dismissal in healthcare. Fortunately, the situation is changing with more and more women sharing their medical experiences on social media platforms and shedding light on this vile phenomenon.
Delays in diagnosis were found to predict anxiety and depression in women with PCOS, owing to the distress caused by seemingly inexplicable hair growth, acne and menstrual irregularity. This serves to highlight the importance of education and awareness of this disorder among the afflicted age group so that a timely diagnosis can be obtained and necessary steps be taken. Moreover, the diagnosis should be followed by routine screening for anxiety and depression among the patients. PCOS is a multifaceted syndrome. It stands to reason, therefore, that the approach to its treatment should be multidisciplinary. The effectiveness of symptom management depends on the psychological well-being of the patient. In addition to the metabolic and gynaecological symptoms of the disorder, the psychological symptoms need to be acknowledged and addressed as well.
As mentioned before, a major source of distress for women with PCOS lies in their inability to conform to the feminine ideals of smooth, hairless skin, regular menstruation and childbearing capacity. Empathy and support from healthcare practitioners and loved ones can go a long way, but it won’t be enough until we as a society break away from this toxic feminine archetype. Womanhood is not limited to physical attractiveness and fecundity, and having a health condition such as PCOS does not make you any less of one.
Isha is a Psychology major with a keen interest in neuroscience and a passion for academic research. She spends her free time writing, binge-watching procedural crime shows and fuming over casual sexism in pop-culture.