For South Asian Women With PCOS, It’s Not Just Symptoms We’re Dealing With

I was familiar with polycystic ovary syndrome (PCOS) long before my diagnosis at 18. My older sister was diagnosed with the condition at 17 and hospitalized multiple times due to ruptured cysts. My aunt also faced challenges with PCOS, bravely seeking a diagnosis despite it being an unspeakable “disease” in many Pakistani households. She had difficulty conceiving and was 36 when she was finally able to have children. And yet, despite being familiar with the name of the condition and its most glaring symptoms, all of which I had — irregular periods, increased body hair, cystic acne, depression — there was so much about PCOS I did not (and still do not) know. 

This lack of knowledge isn't just a personal issue; it affects so many South Asian women, who face a double whammy of both the odds and cultural practices being stacked against us when it comes to PCOS. Not only are South Asian women more predisposed to the condition — one UK study found that 52% of South Asian women living in England had polycystic ovaries, a key indicator of PCOS — but cultural taboos and stigma surrounding reproductive health often leave us in the dark and in pain. As a result, PCOS is deeply underdiagnosed, leaving countless women to navigate severe symptoms with little support or information.

PCOS is a complex and poorly understood condition that affects one in 10 people with uteruses but here’s what we do know: Certain genetic markers, such as variations in the DENND1A and THADA genes, are more prevalent in South Asian populations and are linked to an increased risk of PCOS. The DENND1A gene plays a role in hormone regulation, affecting how androgens (male hormones) are produced in the body; a variation in this gene leads to higher levels of androgens in women with PCOS. Excess androgens contribute to symptoms like excessive body hair, acne and irregular periods. The THADA gene, meanwhile, is involved in insulin production and energy regulation. Variations in this gene can disrupt how the body processes insulin, increasing insulin resistance, which is a key factor in the development of PCOS. 

Insulin resistance is more common in South Asians than in other ethnic groups, even when we are not overweight. Not only does it make managing weight harder, it also worsens other symptoms of PCOS like high androgen levels, leading to aforementioned issues like excessive hair growth and acne. 

When the body can’t use insulin effectively, it leads to higher insulin levels in the blood, which triggers the body to store more fat, especially around the abdomen. This fat storage is more common in South Asian women due to a combination of genetics and traditional diets high in refined carbs. Elevated insulin levels also increase cravings for carbohydrates, making it harder to manage weight. 

“This can often become a losing battle as insulin levels continue to increase, causing weight gain, which further worsens insulin resistance and makes it more and more difficult to lose weight,” Dr. Shefali Mavani Shastri, reproductive endocrinologist at Reproductive Medicine Associates in New Jersey tells Refinery29.

It’s a vicious cycle and adding to the complexity are the social and cultural stigmas surrounding menstruation in many South Asian households. Conversations about periods are often considered taboo, making it harder for women to discuss issues related to reproductive health. This means that many young girls may not even realize that their irregular periods or other symptoms could be signs of a deeper issue like PCOS. 

Then there’s the added challenge of how birth control is perceived. Combined hormonal birth control pills are one of the most common long-term treatments for PCOS yet the stigma around contraceptives in South Asian cultures often prevents women from seeking this option. Patients and doctors alike hesitate to suggest birth control for regulating periods because of the assumption that using it implies sexual activity in unmarried women. For married women, contraceptives are also looked down upon because sex is considered only as a means to an end: reproduction. It’s a lose-lose situation. I’ve experienced these biases firsthand. South Asian doctors have hesitated in the past to prescribe me birth control for fear of how it might look to potential suitors: Who’s going to marry a Pakistani girl who’s doing something as blasphemous as taking birth control? No, seriously. 

I’m 27 and I’ve been on birth control to regulate my PCOS symptoms for nine years now, with no end in sight. PCOS can also be treated with other forms of medication (types that treat insulin resistance) and lifestyle changes such as regular exercise and a healthy diet free from artificial sugars, hormones and preservatives. Research shows that these things can help lower insulin and androgen levels. I’ve known for most of my adult life that I don’t want children but doctors and specialists refuse to help me explore alternative treatment options such as ovary removal (oophorectomy) — which may be considered in cases of severe PCOS or if someone hasn’t responded to medication but it causes permanent changes in the body — on the off chance that I “change my mind.” 

To help with the weight gain I've experienced with PCOS, I'm now considering options like semaglutide or metformin. These medications are commonly prescribed for people with type 2 diabetes but have also been found effective in managing insulin resistance, which is a key factor in PCOS-related weight gain. However, it feels overwhelming to think about pumping yet another substance into my body, especially since I’m not getting proper guidance for managing a disorder that no one seems to fully understand.

I’ve received conflicting and impossible-to-follow advice from every source I’ve approached. I’ve been advised to cut out rice completely (I’m Pakistani, that’s a little hard), to walk but don’t run (but also HIIT can be great sometimes), to avoid corn and peas (oh, but snow peas are fine) and to steer clear of basically any food that brings me joy for fear of bloating and weight gain. I’ve had doctors tell me to take my birth control pill consistently to reduce PCOS symptoms and avoid uterine cancer but not to stay on birth control too long because I might develop cervical cancer. Oh, and that the best way to ease my symptoms is simply to lose weight — even though it's these very symptoms that are stopping me doing so.

Living with PCOS is overwhelming but I’ve found support among communities of South Asian women who have also been diagnosed with the condition and are working every day to understand their bodies better. I’ve joined Facebook groups, followed South Asian content creators with PCOS, and started reading about it more. More women sharing their stories and struggles creates more awareness of this condition, and perhaps in community we can find the support and answers we need. Below, Refinery29 hears from other South Asians who have had similar experiences.

I was diagnosed in 2012 at 18. Being on the birth control pill helps regulate my cycle; when I’m off it, my cycle is irregular. After starting birth control, I gained 15 pounds and experienced every side effect, including increased appetite. The hardest part was dealing with acne that comes with PCOS; once you get the scars, it’s tough. I spent a lot on acne laser treatments but they didn’t help as much as I hoped. 

PCOS isn’t just about hormones — it affects everything. My self-esteem plummeted and I struggled with anxiety, depression and body dysmorphia. I’d cancel plans because of my skin, and my weight gain made me avoid going out. Depression kept me home and people labeled me “crazy” or “dramatic.”

Dealing with it alone helps more than talking about it. I find solace in prayer, and dancing is my biggest therapy. When I’m emotional or struggling, I take classes outside of my team practice. I tried homeopathic remedies and medications such as metformin and spironolactone, but stopped after two weeks due to side effects.

PCOS runs in my family, especially in Pakistan. Many of my cousins live with their symptoms untreated. I want to get off birth control and let my body flow naturally. I hope to have kids one day so getting off birth control is something I need to work on.

I was diagnosed with PCOS at 17. I got my period early, at 10, but I knew something was wrong when my friends had regular cycles and I only had one or two periods a year. When I did get my period, it was extremely heavy, with the worst cramps (the fainting kind) and painful, inflamed acne. 

After 10 years of research and trial and error, I’ve learned to listen to my body and cycle. Women with PCOS have hormonal imbalances that change throughout the cycle so it’s important to exercise regularly, adjusting the intensity based on your cycle phase. Planning my routine and lifestyle around my cycle and staying consistent has definitely helped.

For my emotional and mental health, I’ve learned to be kinder to myself. It’s not my fault I have PCOS — I was born with it, and it doesn’t define me. This took time to accept because I focused so much on weight loss (the most common solution doctors suggest) and it’s frustrating when the effort doesn’t pay off. Being a South Asian PCOS girly is tough, and while I’m grateful for supportive parents, most people in the community don’t understand.

There’s a stigma around PCOS and many people assume you’re making excuses despite your efforts. Advocate for yourself at the doctor’s office: Come prepared with research and if your doctor doesn’t listen, keep pushing to be heard. If you want to decline a specific medication, be persistent and have a good explanation ready. Get blood work regularly if possible, and nourish your body based on your blood work and cycle.

Despite suffering from typical symptoms for years — irregular periods, increased body hair, horrible PMS, brain fog — I wasn’t diagnosed with PCOS until 2024 at age 27. The diagnosis was both validating and shocking as I’d been dismissed by doctors for years because I was “skinny” and didn’t “present like someone with PCOS.”

I started learning about the impacts of irregular periods, including an increased risk of cancer, which worried me due to my family history. I don’t have a regular or intense exercise regimen — exercise regulates my cycle but if I drop below a certain weight, my period stops altogether.

I gained the most weight in a short period over the last six months, despite no major lifestyle changes. Then I discovered that some “healthy” foods I’d been eating were exacerbating my PCOS symptoms.

Many women in my family have PCOS and it’s been comforting to discuss and share experiences with them. Knowing I’m not alone in being gaslit by western doctors is a relief, and learning from those who’ve known about their diagnosis longer than me has been amazing.

I had irregular periods from the start but since they were common in my family, I didn’t realize they were PCOS-related. It wasn’t until I started missing periods for months at a time and rapidly gaining weight that I knew something was wrong. I went through a phase where my period came every two months, sometimes twice a month. My periods were always painful and came with severe migraines that caused me to miss school, but I didn’t realize how abnormal it was until I got older and the pain worsened. There were days I couldn’t get out of bed because of how painful the cramps were.

PCOS heavily impacts your menstrual cycle. My periods were irregular for years, leading to me going on the pill, which honestly made me feel worse. Before managing my symptoms, I went from a small to a medium-large in just a few months. 

Over the last few years, I’ve gotten serious about tailoring my exercises for PCOS. Initially, I went through an unhealthy cycle of working out for hours, sometimes two to three times a day, yet still gaining weight and feeling defeated. Over time, I learned that certain exercises are better for PCOS, leading me to switch to practices like Pilates and slow weighted workouts.

My family doesn’t really understand PCOS — they thought my issues were normal since similar ones were common for them. My biggest support has been online communities. Seeing others dealing with the same issues and overcoming them was empowering. I followed people’s journeys to see what worked for them and tested it out for myself, which was refreshing and encouraging. Education on PCOS is severely needed — there’s little to none.

I was diagnosed with PCOS in my early 30s and it was a relief to finally know what was wrong.

My heavy cycles and weight gain around my midsection raised flags. Ten days before my cycle, I’d become a different person, and during my cycle I’d be in debilitating pain — it was horrible! The constant diet and exercise failures were frustrating, especially as a brown girl who was told that skinny is beautiful.

My fitness journey started young and I’ve tried it all. What works for me is moderate weights (three barbell classes a week) and light walking (10,000 steps a day). 

Motivation and routine are always needed but prioritizing these was a challenge because everything requires time. I absolutely cannot do high-intensity interval training — my body just won’t function afterward. While my insulin levels improved greatly, I was constantly tired.

PCOS doesn’t have a real physical appearance so it’s hard for others to understand the limitations it creates. It often feels like people think it’s made up; only someone who has it can truly understand.

Along with a nutritional plan and exercise, I’m on the pill and metformin, and I take various supplements to manage my PCOS symptoms.

My mother was beside herself when she found out I have PCOS but I don’t think she understood much. It’s such a mysterious condition and even though more people are informed now, it’s still hard to accept it personally.

I self-diagnosed PCOS and hypothyroidism at 19. I noticed my symptoms and asked my pediatrician to check my thyroid levels because something felt off. After a blood test confirmed PCOS, I was prescribed metformin. The symptoms that made me sure I had PCOS were missed periods and unexplained weight gain, even with a good diet and physical activity. I felt puffed up, swollen and I didn’t recognize my own body.

Coming from a South Asian culture, it’s hard for people to understand the disorder. I was once called lazy for not getting out of bed fast enough, even though I was suffering from muscle aches, cramping and fatigue. That broke me inside but I knew my truth. I went to school full-time, worked full-time and helped at home as the eldest daughter in a South Asian household where my mom was raising three kids alone.

The side effects of metformin (nausea, muscle pain, cramping, fatigue) are a challenge. When my thyroid is low, some symptoms overlap with the side effects of metformin and PCOS, leaving me exhausted and in constant pain. This makes working out, which I enjoy, very painful and stressful. Despite this, I make time to be physically active through walking and hiking.

I’ve suffered from both anxiety and depression as symptoms of PCOS. Due to unexplained weight gain and persistent moon face, I became overweight but am still active and eating well. People comment on my body, uninvited and unprovoked. At 5’8”, I’m strong, muscular and curvy, which makes me stand out. Aunties don’t care how hard you work out or what you’re struggling with; if you don’t fit into their box, you’re judged. Someone accused me once of eating too much and said I should stop consuming chocolate (I barely eat it). South Asian aunties can be unhinged and their comments have left me in shock.

Thankfully, I had no issues conceiving my first baby within two weeks of trying. If that hadn’t been the case, it would have added a lot of heartache and stress but I didn’t dwell on that possibility when I was trying to get pregnant because more stress can only make PCOS worse.