Living With Polycystic Ovary Syndrome(PCOS)

An anecdote:

The incidence that is etched in my mind is of this little girl, Sarah who came to the gynaecology OPD one Monday morning.

Sarah, a 14-year-old trudged into the OPD along with her mother. As they sat on the wooden chairs near the doctor’s desk, her mother started rambling about Sarah’s problems, how she was suffering from irregular menstruation and her skin wasn’t anything like her sisters.

Sarah had a ‘wheatish complexion’ (as the Indians like to call it) with dark brown hyperpigmentation on her face and was slightly chubby if I may say. 

The doctor examined her neck and hands to find that the hyperpigmentation wasn’t limited to her face and was also on herneck and hands.

Sarah looked scared.  “What is a 14-year-old doing among women with bulging tummies?”, she asked herself.

 After reaching a diagnosis the doctor turned to Sarah and said, “you’re obese, you need to lose weight”

“Do you want to grow a mustache?” he said glaring.

The fear of Sarah’s face deepened as the doctor’s words shook her. For a young girl, whose only concern was to paint her toenails green and swoon over Nick Jonas, the thought of growing a mustache was scaring.

The doctor advised the mother to restrict carbohydrates in Sarah’s diet because the only reassuring treatment was ‘lifestyle modification’.

Sarah wasn’t able to understand why was she told to exercise and lose the extra kilos while her friends still had plump cheeks, clear skins, and no gynaecology appointments. 

Restricting your diet meant replacing chocolate chip cookies with dry fruits and chips with cucumber.

The confusion was evident on Sarah’s face. She glanced at her hand kept beside her mother’s and noticed the slight difference. Her mind was exploding with a plethora of questions, why was she supposed to adopt a low carbs diet? Why did her skin show different shades of brown?  Why was she asked to become skinny? Was she not good looking enough?

But the doctor’s advice was simple. Lose weight because you obviously don’t want to grow a mustache.

For Sarah, the disease didn’t make any sense. Neither was it serious enough to debilitate you nor to be shrugged aside. 

Sarah smiled at the doctor tremulously and walked out of the OPD with her questions unanswered.

Facts: September is regarded as PCOS awareness month. 1 in every 5 women in India suffer from this disease and the experience is frustrating for most of them. The diagnosis of PCOS is offered by 3 criteria. PCOS cannot be diagnosed at adolescence when most girls start showing symptoms and insulin resistance and obesity are not included in any diagnostic criteria as of yet. These are just a few theoretical fall-backs that women with PCOS face. If we talk about the physical and emotional aspects, the rant can go on forever. This is a multifaceted disease with symptoms varying from acne, hirsutism, acanthosis, weight gain, menstrual irregularities, infertility, to emotional instability. Some women may show all of these while some may show just one symptom.

Since most women start showing symptoms at adolescence or early 20s, the toll that the disease has on their mental health is immense. According to a study I conducted, 75 percent of women with PCOS suffer from emotional problems like depression or anxiety. While PCOS is partly the reason for this, but a huge credit also goes to the lack of self-worth and self-confidence that girls develop over the years. Most women start seeing themselves as ‘not beautiful’, ‘not worthy enough’ owing to the acne, the weight gain, the pigmentation, or the excessive hair on their faces. Some even develop body image issues like bulimia and anorexia.

While the symptoms can go away or can be kept in control with modern medicine, what remains is the crippling anxiety, depression, or extreme self-consciousness.

What we as doctors can do is to view PCOS with a holistic approach and not just as signs and symptoms. While losing weight and adopting a healthy lifestyle is the foundation of treatment of PCOS, what patients also need are a few supportive words that might have a positive impact on their mental health.  They just need to hear that PCOS does not define them. None of the symptoms, not even one, defines who they are. Although there is no permanent cure as of yet, it can be managed with lifestyle modification and medications.

Mihika Agarwal
Sir Ganga Ram Hospital, New Delhi

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