PCOS: What is Missing
-Written by Dr. Tejal B. Lathia
Polycystic ovary syndrome is very common in India, affecting 1 in 3 girls. It is a complex condition with a huge impact not only on reproductive health but cardiometabolic outcomes as well.
When I was training in Endocrinology, the entire focus was on making the diagnosis, ruling out other hormonal conditions that can mimic PCOS, screening for metabolic issues ( diabetes / dyslipidemia and high blood pressure) and starting treatment (hormonal meds). It was only when I started practice that I realized how woefully unprepared I was to manage PCOS for real.
The reason is that we were taught all about the “biomedical” issues but absolutely nothing of the “biopsychosocial” aspect of PCOS.
Inappropriate hurtful comments from neighbors / relatives / friends on hirsutism and acne
The anguish of gaining weight and not being able to lose it
The constant blame and shame from family and caregivers
The profound impact on mental health – depression, anxiety, negative body image, low self-esteem and confidence due to hirsutism and obesity
Social withdrawal and isolation further contributing to depression, anxiety, insomnia and mood swings
I realized I had never even attempted to find out what girls with PCOS experience,
how they struggle with these neglected aspects of PCOS
I participated in research to understand this better. The PCOS SEVA study and BLUE MORHO survey for the first time in India, looked at the effect of PCOS on the sexual lives of young women who often felt “manly” and unattractive as a result. We also sought to capture their experience with the healthcare system – how information was shared, whether support groups were recommended. We also did a detailed qualitative study examining the experience of hirsutism and the mother-daughter relationship as they negotiate this condition together.
This research helped me immensely in my practice.
2 major lacunae that I tried to fill – supporting girls to cope with the diagnosis and effecting lifestyle modifications.
I started to enquire about how girls were coping with the condition. I asked them if they were experiencing depression or anxiety. I asked them if they were struggling with social stigma. I asked them how their family was reacting to the diagnosis.
I organised referrals to a psychologist to help them process the diagnosis and cope with it.
Often, we emphasize the importance of lifestyle management in PCOS in a negative manner, putting the onus of weight loss on young girls without giving them any tools to lose weight. Arbitrary advice of walking and eating healthy are inadequate to effect weight loss in PCOS and needs a concerted multidisciplinary approach – nutritionist, physiotherapist and psychologist for holistic treatment.
One of the saddest things for me is when the constant exhortations of “lose weight, lose weight” has resulted in eating disorders in young girls – anorexia, bulimia, binge eating and night eating. I remember a 23-year-old girl burst into tears at remembered hurt – a gynaecologist told her at the tender age of 13 that she had a “bad lifestyle”!
I organize referral for the patient to a digital therapeutic program which provides this holistic, multidisciplinary approach on an online platform at a reasonable cost. Most girls learn healthy eating habits, start exercising, learn to manage stress and sleep better – contributing greatly to their emotional wellbeing.