Trisha (who wants to go by her first name only), 27, a financial analyst based out of Gurgaon, was diagnosed with borderline polycystic ovary syndrome (PCOS) at the age of 20. She has been struggling with the painful symptoms of her condition since then. "A week before I'm about to get my period, I experience violent mood swings, cramping, bloating, nausea and a complete lack of sexual desire," she says. Also, her weight has fluctuated throughout her twenties which has often led to brief periods of eating disorders or excessive exercise. "Sometimes, my period is late by 15-20 days, although I am yet to get on medication for the same since I'm wary of its side effects."
What Trisha describes happens to many women struggling with PCOS, a hormonal disorder that causes them to produce higher than average amounts of androgens or male sex hormones. Some symptoms include missed periods, enlarged ovaries, cysts, excess body hair, weight gain, infertility, acne, and thinning hair. While it affects up to 1 million Indian women per year, the condition seems to have no outright cure. A combination of birth control pills and diabetes drugs that combat insulin resistance can help control its symptoms but can often produce predictably adverse side effects.
Researchers believe that PCOS can hugely impact a woman's sex drive; the chemical imbalance can lead to weight gain, excessive hair growth and mood swings. This, in turn, can lead to an increasing dissatisfaction within relationships and for people to self-pathologise.
Ask Lasya Nadimpally, 29, a Delhi-based mental health advocate and journalist who has struggled with the condition since 13. She says that she first visited a doctor because her periods were irregular, and she was experiencing rapid weight gain. "I was overweight, but I wasn't obese," she recalls. The gynaecologist she was consulting with did not recognise that it could be a PCOD issue; instead, he body-shamed her every time I went into the clinic, which would be every month. "He put me on birth control and fat loss pills. I've been taking them since eighth grade," she says.
The condition caused her blood sugar to spike, remembers Nadimpally, who also developed acne all over her face and body. "I struggled with body shaming," she says, adding that she also began experiencing symptoms of post-traumatic stress disorder because of the series of misdiagnoses. She also steadily gained weight, putting on around 25 kg between the ages of 13 and 21, something which deeply caused her self-confidence to plummet and changed the way she thought about her body.
"It exacerbated my PTSD, which resulted in a further disassociation from the body," she remembers. Disassociation from the body often occurs as a response to trauma, possibly as a way to distance themselves from the traumatic situation. It's practically impossible to prioritise one's health or life when one's disassociated from their own body. "I thought I didn't deserve to have sex. My response to sex and romantic relationships were informed by trauma," she says, adding that because of the fat loss pills and birth control pills, body shaming and PTSD, she never had any sex drive.
Astha Ahluwalia, a counselling psychologist based in Gurgaon, explains how androgens increase with weight gain in women diagnosed with PCOS and make it that much harder for them to lose weight. "It leads to a lot of body image concerns with obesity, excessive hair on your body and periods get impacted. The belief becomes that there's something wrong with me and my body." Complex psychological issues are at play wherein one has a distorted, illusory perception of their own bodies. According to Anjendra Tagre, a Pune-based consulting psychiatrist and psychologist, factors like deep insecurities, upbringing, the environment they were growing up in coupled with societal and religious sanctions often come up. "I try to tell clients that the part of the body they identify with is not actually their whole identity," she says
What makes it worse is the taboo surrounding sex that results in a culture of silence. "Even in the more educated, privileged circles, when we watch movies, and a sex scene comes on, we switch the channel. We treat it like it's something dirty. When we don't discuss topics like masturbation and sex at home, children grow up with the idea that they're doing something wrong. As an adult, this can result in doing trauma work in a therapist's office, an essential step in having a fulfilling sex life," says Tagre.
Dealing with decreased libido when suffering from PCOS involves a combination of medication, narrative therapy, and a robust support system, which includes building a relationship rooted in the acceptance of the self and the other. "Developing an understanding and acceptance between a couple is very important. Enhancing communication, helping build distress tolerance between the couple, building an interpersonal relationship, and connectedness are all aspects of treatment. If there is a lack of emotional intimacy because there's a lack of sexual intimacy or vice versa, it needs to be addressed," Astha says.
Cognitive restructuring also goes a long way in determining patients' negative beliefs about themselves and their body and busting preconceived notions about libido."A phase of decreased sexual drive is not a cause for alarm in a PCOS patient. Sometimes, it can be a side effect from the medicines prescribed but essentially, it's your body trying to tell you something," says Michelle Faye Perreira, a psychologist based in Mumbai.
It was only when she fixed her relationship with her body through a combination of medication and therapy that her PCOS became more manageable, remembers Nadimpally. "I never felt attracted to people. It's only when my hormones were balanced again that I got back my libido," she says.
Trisha, who also struggled with body dysmorphia and found herself not attracted to her partner or wanting sex, says that the lack of motivation would lead to depressive episodes or not wanting to exercise and emotional eating, which further compounded the problem. In her case, communicating openly with her partner was what helped bring her sex life in balance, she says. "It helped dispel most of the guilt I was feeling."