Decoding Polycystic Ovarian Syndrome
One out of five Indian women maybe affected by PCOS and 65% are not aware of its symptoms
Avani Sharma, (22), a student, was 16 when she first got to know about the Polycystic Ovarian Syndrome (PCOS). Among a series of health physical complications, hair fall was the first sign of PCOS for her. "I remember going to my family doctor but nothing helped. A friend who suggested that I get tested for PCOD/PCOS and that's how I got the right help," she recalled.
Like Sharma, there are many women who remain unaware of PCOS while several others fail to trace its signs and symptoms. According to a 2019 survey, one out of five Indian women are affected by PCOS and about 25% of them don't know about the condition, and 65% are not aware of its symptoms.
While the exact mechanism of how it happens is not understood, Dr Tanaya Narendra, an MBBS MSc from Oxford University and an internationally trained doctor, embryologist, scientist, and women's health content creator, said that PCOS has a well documented history of causing mental health difficulties.
For example, people who suffer from PCOS are three times more likely to also suffer from depression, anxiety disorders, and OCD. Explaining how the condition is also understood, she added, "there is a lot of inaccurate formation out there. Patients are often left without answers, self blaming, and frustrated by the lack of progress, which makes this a particularly challenging condition to go through with".
Polycystic Ovarian Syndrome, originally called the Steve Levianthal syndrome, is a complicated disorder that has an impact on many facets of a person's health, including mental health.
"People often get confused between PCOS and PCOD, i.e., Polycystic Ovarian Disorder due to the stigmatizing nature of the word 'disease', the condition was renamed polycystic ovarian syndrome. Contrary to popular articles written by multiple internet sources, PCOD is just an outdated term for the same condition," said Dr Narendra. She highlighted that it's not suitable to name the condition 'PCOD' as diseases usually have clearly well understood causes, whereas syndromes are a collection of symptoms with no clear causality, as in case of PCOS.
Hormones are essential for a healthy mind as well as a healthy body as the chemicals produced by endocrine glands regulate a variety of body functions. They aid in the regulation of metabolism, mood, reproduction, and sexual health. Hormonal imbalance and irregularity plays a major role in triggering PCOS.
Komal Rajoria, a Delhi-based counselor, said, "hormone dysregulation occurs when the endocrine system releases too much or too little of a hormone. Hormonal abnormalities in women can induce or exacerbate symptoms such as insomnia, mood swings, anxiety, and despair". Because female hormone levels and changes are so complex, understanding how hormones and mental health are linked becomes crucial.
Twenty-five-year old Sanya (name changed on request) is an independent researcher and a former educator who was diagnosed with PCOS when she was 15. Ever since, she's been dealing with mental health issues such as Attention Deficit Hyperactivity Disorder (ADHD) and depression. This has affected her personal, academic, work, as well as social life. Sharing how lethargy, anger, and a lingering feeling of being low becomes an obstruction, she said, "I wasn't able to process things properly and was disillusioned most of the time".
Women with PCOS are twice as likely to have disrupted mental health and develop symptoms of stress, depression, anxiety and obsessive-compulsive disorder. "Anxiety, sadness, and sleeplessness are common mental health problems in people whose adrenal hormones are out of balance. Because the amounts of these hormones change regularly, they may have a variety of effects on women," added Rajoria.
People with PCOS could experience persistent mood swings, depression, anxiety, heart palpitations, OCD, eating disorders, and bipolar disorder. These can affect a person's ability to function normally and to be able to give their best to their work and their relationships.
"In women, when the progesterone level is imbalanced, they may experience induced stress," said Rajoria. Increased levels of androgens also leads to a higher prevalence of mood problems. PCOS patients are typically insulin resistant which is frequently linked to anxiety and depression.
Nidhi Singh, CEO and Co Founder, PCOS Club India, explained, "women with PCOS also have elevated inflammatory markers because of which high-stress levels and depression are a lot more commonly seen". According to Singh, low levels of vitamin D in PCOS patients is another factor which contributes to depression.
For Sanya, things also flared because her mother would to shame her because of irregular periods, this affected her emotionally. Beyond the hormonal implications of PCOS, the challenges and frustrations of controlling PCOS symptoms must not be disregarded.
A woman with PCOS has raised levels of male hormones androgen and testosterone, which result in excessive facial and body hair. This can perpetuate social anxiety, low self-esteem, body image issues, and insecurities and also contributes to stress.
Dr Narendra explained that due to increased testosterone levels in PCOS, infertility, weight gain, and dermatological symptoms such as acne, hair loss, or excessive hair growth can also harm a PCOS positive woman's mental health. It may also make women feel less feminine, embarrassed, self-conscious, and undeserving.
Irregular periods are a taboo in society. Instead of helping the woman with PCOS with the right diagnosis, gynecologists often prescribe contraceptives and even gaslight the patient. Sanya shared her experience with a gynecologist from AIIMS, "the doctor commented on my weight and said, 'why don't you do anything to control it?' She also commented on my facial hair and asked if I felt embarrassed because of it. This hit me because it was coming from a reputed professional". Sanya added that acne, weight gain, and excessive hair made her very conscious of how she looked, and that she was also bullied because of it in school.
Sharma on the other hand lost her appetite and had low energy levels because of PCOS. "I didn't get periods for two months and it impacted my face, body, mood, and expressions. Everything was messed up and I used to be low on energy throughout the day," she recalled. Sharma was also bullied for being overweight in school, "no matter what you do, losing weight becomes a herculean task when you have this syndrome."
Rajoria added that, "the social stigma associated with having excess masculine hormones and facial hair makes the situation frightening". According to Sanya it gets traumatic and problematic to deal with things because of the image promoted by the media of perfect bodies and flat tummies.
Though Sharma never faced any problems in her relationship because of PCOS, Sanya said that one's romantic relationship is affected. "Getting conscious of one's own body is pertinent especially when you're sexually involved with a person. Things get better and easy when your partner is understanding and validates you. However, if it's the opposite and your partner passes an unsolicited comment, even if it is with a light hearted intent, it accentuates and affects the sexual as well as mental health," said Sanya.
According to a research published in the Iranian Journal of Reproductive Medicine, the complications associated with PCOS such as anovulation, obesity and hyperandrogeism affects sexual function in women of reproductive age. Singh validated the findings by sharing that PCOS can cause women to have a low libido, sexual dysfunction, and low sexual satisfaction. "About 57.7% of People with PCOS suffer from sexual dysfunction with desire and arousal being two commonly affected categories", she added.
The syndrome and its hormonal and psychological consequences have a big role in regularising our sex drive and libido. Dr Narendra said that the feelings of lack of self confidence and poor body image issues negatively impact a woman's libido. Insecurities, poor body image and perception of oneself, and hirsutism may lead a woman to restrain and not be completely comfortable in front of their partner. "Hormonal issues can also make arousal more difficult, making pleasure not a priority at all. It may also affect intimate relationships causing mood swings and anxiety," she added.
"I've been in phases wherein one moment I have repelled and aversed against any form of sexual or physcial conact with my partner, while in the other moments my sex drive and need for contact has peaked. So because of the constant mood swings, I juggle between varying phases," recalled Sanya.
When a woman is not just as equally aroused or excited as her partner or has bouts of recurring and extreme mood swings because of the syndrome, Rajoria said that it "can make a woman feel guilty".
It has been proven that because sex drive and intimacy is influenced by endocrine, mental and social factors, a woman with PCOS has a lesser chance of having an orgasm and lower sexual satisfaction and completion rate. Sanya is one among many women for whom having an orgasm has been difficult over the past few years.
Talking about the lack of awareness among the general public and a lack of access to affordable/free mental health care services in the Indian scenario, Singh said that there was a lot of misinformation, misrepresentation, misunderstanding, and fear regarding this issue.
According to Dr Narendra, PCOS requires holistic, multiple disciplinary monitoring for the condition and a simple treatment with medication is not necessarily the answer for most people. "Finding a good gynecologist who can also provide you support from a nutritionist, a physical therapist who helps with exercise, and most importantly, a mental well being specialist who can support the challenging mental health journey that can be a part of having PCOS is the best way to move forward," she said.
People who have PCOS get so worried and anxious about their condition that they inevitably drive up their stress levels, and this adds to the problem. Looking out for early signs of PCOS and consulting a gynecologist as early as possible is the way to go forward.
According to Dr Narendra, "the four main pillars of managing your PCOS are good sleep, good nutrition, less stress, and exercise. One must relax, be patient, and not fall for bogus claims and tricks."