How teens with PMOS are made to live with shame, fear and isolation

During her high school, while most teenagers were worrying about classes, friendships and future plans, Nitha (name changed) stopped taking photos of herself altogether. Her body was changing in ways she could not understand. She experienced unexplained weight gain, severe skin breakouts, and debilitating menstrual cramps that were bad enough to make her sit out PE class. “During the peak of high school, I became incredibly insecure about the weight gain,” Nitha, now 21 years old, recalls. “I stopped taking pictures of myself altogether because I didn’t want to see them posted anywhere. I stopped clicking selfies and didn't want anyone to take my pictures either." “The last time I had an ultrasound and went through a couple of tests, my PMOS symptoms were worse," Nitha says. “The doctors told me then that it would be very difficult for me to have a child in the future. Hearing that news at the age of 20 was incredibly hard to process, especially while dealing with everything else.”The reality of PMOSPolycystic ovarian syndrome (PCOS), recently framed by an international consensus as polyendocrine metabolic ovarian syndrome (PMOS), is often misunderstood as merely a reproductive or ovarian issue. In reality, it is a full-body metabolic and hormonal condition affecting everything from insulin levels and heart health to sleep and mental well-being.“PMOS isn't just one difficult week a month. It's the entire month,” Nitha explains. “Because your hormones control everything, it can trigger thyroid issues, diabetes, or blood pressure at any time.”For Shifa (name changed), when she was diagnosed with PMOS at the age of 17, she didn't know what it meant, but everything started changing quickly.“I started having irregular periods constantly, and that made me reach out to a doctor. I felt so different. My weight was increasing so fast. I kept asking, 'Why did this happen to me?’” Shifa says. “The smallest things began to affect me deeply. If someone mentioned my weight or my acne, it would stay with me and impact my mental state.”She adds, “I have gained about 20 kgs from the time I got diagnosed. PMOS had a massive impact on my confidence. I would sit on my bed trying to sleep, but I just couldn't. I’d wake up the next morning exhausted and in pain.”The mental health toll According to a comprehensive scoping review spanning 2001 to 2021 published in the Journal of Psychiatry Spectrum, PMOS affects between 5% and 15% of women globally, with prevalence in India ranging from 3.7% to an alarming 22.5%.Beyond its reproductive symptoms like amenorrhea, anovulation, and infertility, PMOS carries substantial physical and metabolic risk. Women with the condition are more likely to experience obesity, hirsutism (growth of dark thick hair), acne, and acanthosis nigricans (dark thick patches on parts on body folds), alongside a heightened risk of insulin resistance, diabetes, hypertension, dyslipidaemia, and cardiovascular disease.But the review's sharpest findings concern mental health. Depression among Indian women with PMOS ranges from 11% to 93.5%, far exceeding global estimates of 28% to 64%. Anxiety follows a similar pattern, ranging from 15.45% to 100% in Indian samples compared to 34% to 57% globally. Over half of Indian women with PMOS (54%) reported significant psychological distress, with structured clinical interviews revealing a suicide rate of 8.1%. Other psychiatric conditions also appear at elevated rates: panic disorder (15.45%), obsessive-compulsive disorder (6.36%), bipolar disorder (2.72%), and eating disorders like anorexia and bulimia (3%).The review highlights specific physical symptoms as direct drivers of these psychiatric effects: facial acne significantly predicted depression, while hair loss and perceived infertility were linked to acute anxiety. Excessive body hair growth severely undermined self-image and psychological quality of life.The stress loop Dr Shaibya Saldanha, a gynaecologist and co-founder of the Enfold Proactive Health Trust, describes the relationship between PMOS and mental health as a loop, one where the physical and the emotional keep feeding each other. “Whether PMOS is the chicken or the egg, we are not entirely sure,” she explained. “Is it something that causes depression itself, or is the person already prone to depression and stress due to a very challenging lifestyle? We have to look at where it starts.”Nitha notes, "It feels like a never-ending loop. The hormonal imbalance causes insulin resistance and weight gain, which then makes me feel anxious.”Shaibya points out that the onset of PMOS typically coincides with the teenage years. “The teenage years, when a girl's hormones are already changing, are a time of maximum educational stress. We see this often in young students who are collapsing under the pressure of competitive exams like JEE and NEET.” She adds, “Parents often shut down extracurriculars like dance or sports, telling children to focus only on studies. In doing so, we remove the most important things: timely meals, adequate sleep, and a lack of physical activities."Shaibya also says, “If you are working until 2.00 or 3.00 AM and rushing to meet deadlines, you are going to be emotionally very labile. When you are depressed, you tend to eat poorly, sleep late, and lose yourself in social media for hours, essentially trying to drown out the voices in your head. Depression causes sugar cravings, and lack of sleep leads to weight gain. Because of this, weight is almost always an emotional issue.”The weight of social judgement For Shifa, the sudden physical transformations brought on by PMOS damaged her self-image and pushed her into isolation. “Society never stops judging,” Shifa says. “People point out your insecurities and question your acne or weight gain without understanding what you are going through. They just want to judge. I started avoiding socialising altogether because people would constantly ask about my face or my weight."For Nitha, the emotional burden was made heavier by family silence and stigma. “My family is conservative, and I’ve been told not to tell my grandparents about my PMOS. When my grandfather tells me to work on my weight, I can’t even explain the medical reason behind it.”Nitha also stresses the need for awareness in schools, especially among male teachers. “They didn't understand why I couldn't participate in sports due to debilitating cramps. They simply didn't know how to support us.”Fertility fearsOne of the hardest parts of diagnosis is the way fertility is discussed with teenagers. “Hearing that news about my fertility was incredibly hard to process, especially while dealing with everything else,” Nitha recalls.Shaibya too criticises how doctors prematurely communicate fertility risks to adolescent girls, creating unnecessary psychological trauma.“Doctors often immediately tell 16- or 17-year-olds, ‘You will have trouble having a baby.’ These children panic when they hear that. Why would we want to add that kind of tension to a young person’s life?” she says. She notes that the fear of infertility follows them into their future marriages. “It makes them feel 'defective' every single time the topic comes up.”Shaibya clarifies that the clinical reality of fertility with PMOS is far less bleak than teenagers are led to believe: “Frankly, I have seen that women with PMOS have equal chances of fertility as those who do not have the condition. PMOS is not a permanent sentence of infertility. I have many patients with completely normal cycles and no hormonal issues who struggle to conceive, and many women with severe PMOS who become pregnant successfully.”Beyond pillsFor some patients, the problem is not just the diagnosis but the way treatment is delivered. “Being told I needed birth control pills (hormone pills) for 21 days was the worst experience,” says Shifa. “I ended up changing three different doctors because none of them were making me feel comfortable or heard.” Shaibya adds that shaming patients about their weight gain deepens the problem. “When a doctor simply shouts at a teenager to lose ten kilos, it only adds unnecessary stress. Teenagers are often pressured by society and their families. When doctors approach weight gain as if it's the patient's fault, these young people are essentially being gaslit.”When offered synthetic weight-loss solutions, Shifa chose to step back. She says, “I was recently advised to take a weight loss pill, but I decided not to take it. I have seen so many people suffer from severe side effects, and I even heard a report of someone losing their life. The idea of taking those pills stressed me out too much.”Shaibya argues that treatment has to go beyond medication. “Giving hormonal treatment alone is like pouring a thin layer of cement onto a damaged road. You might think the road is ready for the next race, but without addressing the underlying foundation, it is eventually going to crack again.”She further added, “Rather than just adding hormones or medication, we need to look at lifestyle, depression, and therapy. Treatment requires individualised care plans, including home-cooked food, timely meals, 8 to 9 hours of sleep, and reducing caregiving or financial burdens on young women.” A change in mindset For both Nitha and Shifa, healing began not with a magic pill but by building support systems, adopting practical outlets, and shifting their internal narratives. “Physical activity like playing basketball, going to therapy, and journaling were the specific methods that truly helped my mental health,” Nitha says. “My advice to newly diagnosed individuals is rooted in community and education: come to terms with the fact that you are not alone. Many girls have PMOS.”She further adds, “And a mistake I made was simply Googling for answers, which made me more anxious. I would tell people to avoid it and visit a doctor when needed.”Shifa says, “My mother is my greatest support. She constantly tells me, 'You don't have to worry. This isn't for a lifetime. You can reverse it.' I have changed my thinking. This is not a disease. It is something that can be managed by taking care of myself and my stress levels.”She added, "Instead of taking pills, I am trying to reverse the condition naturally. My doctor told me that if I can control my insulin resistance, I can reverse the PMOS, so I am choosing to focus on that instead of medication.”“And what I have learned through all these years of suffering from insecurities is that you do not compare your journey with anyone else's. Everyone has a different type of PMOS, so you must be patient with your own body, Shifa emphasises. This article was written by a student interning with TNM