One night in February, my husband and I were bickering about our car. He said something that pissed me off and I snapped like a worn out hair tie: I hollered absurd accusations, stormed up and down the stairs and ugly-cried until I was too tired to function. Though I knew I was being wild at the time, my emotions felt terminal.
The next morning I wrote in my journal, “Something is starting to shift with my mental health.” Throughout the entry, it’s clear I was confused and distraught. I pondered the same question ad nauseam: what is wrong with me?
Sitting on the toilet with blood-stained underwear around my ankles a couple of days later, I realized my outburst was fueled by particularly severe PMS. Over a decade earlier, I was diagnosed with Polycystic Ovary Syndrome (PCOS). People with the condition were born with ovaries and experience at least two of the three main diagnostic criteria: menstrual irregularities, elevated levels of androgens like testosterone and the presence of small follicles on the ovaries.
I’d lived most of my adult life with annoying but not debilitating symptoms: painful cramps, erratic pimples, maddening stretches of insomnia and PMS that mostly manifested as apathy.
Then, in October last year, I went off birth control to answer a question I commonly see in PCOS-related Reddit threads: am I even fertile? Without the NuvaRing’s regulating influence, my mood took a turn – plummeting into deep depression and bouts of irritability in the week before my period.
The mental health toll of PCOS
Though estimates vary, between 8 and 13% of reproductive-age women have PCOS, and many experience adverse mental health outcomes. Recent studies have revealed that people with PCOS are four to seven times more likely to have depression and anxiety, three to six times more likely to have an eating disorder, and 8.47 times more likely to attempt suicide. In a survey conducted by the non-profit PCOS Challenge: The National Polycystic Ovary Syndrome Association, 62.15% of the 900 respondents reported high to severe mental health impacts caused by the condition.
I spoke to 10 people with PCOS, and all say they’ve felt unequipped to deal with the associated mental health impacts, partly because the syndrome itself is not fully understood. It can affect so much: self-esteem, gender identity, relationships and sexuality. Confusing medical advice, delayed diagnoses and a hodge-podge of imperfect treatments only exacerbate the emotional toll.
Not long after my explosive outburst, I sought help from a psychiatrist, hoping to understand and better manage my stormy moods. When I mentioned that these episodes always seemed to occur at the same time every month, I felt dismissed. The psychiatrist responded, “I see signs of bipolar disorder.” Though she refrained from an official diagnosis, she did offer a prescription for bipolar medication.
Some studies suggest a bidirectional relationship between bipolar disorder and PCOS. But bipolar didn’t fit my experience. “If mood symptoms appear monthly, this suggests a sensitivity to hormonal fluctuations during the menstrual cycle” and probably PCOS, says Phoutdavone Phimphasone-Brady, a clinical health psychologist in the Department of Psychiatry at the University of Colorado who specializes in PCOS.
While there’s significant overlap between symptoms – including mood swings, irritability and insomnia – I didn’t experience the excessive energy and out-of-character behaviors typically associated with bipolar disorder. Misdiagnosis could happen when providers aren’t familiar with PCOS, says Phimphasone-Brady, who recommends that patients see a reproductive psychiatrist or psychologist experienced in menstrual cycle-related mental health issues.
Experts say that people with PCOS may suffer from mental health issues due to a number of biological factors. Elevated levels of androgens, such as testosterone, can contribute to mood disturbances and anxiety. Insulin resistance, a common symptom, affects neurotransmitter function and mood regulation. Chronic inflammation associated with PCOS is linked to depression and anxiety. And emerging research suggests that people with PCOS have fewer beneficial bacteria in their microbiome, increasing inflammation in the brain and possibly worsening mood disorders.
After just one session with the psychiatrist, I felt like drugs were being pushed on me without a clear reason to take them – and the anxiety around my moods intensified. I knew the darkness would eventually return, but with my irregular periods, I struggled to get ahead of it. I wondered: should I meditate more? Just take the pills? Ramp up my self-care?
It’s easier to believe we can overcome health obstacles than to accept we’re powerless against the slew of macro forces that impede our wellbeing. Applying a hustle culture mentality to my PCOS symptoms felt more empowering than accepting the long-held and widely quantified truth that, medically, women’s bodies just don’t matter all that much.
How body image issues affect self-esteem for people with PCOS
The consequences of insulin resistance and elevated testosterone levels – such as weight gain and difficulty losing weight, excess facial and body hair, acne, and generally more masculinized appearances – can lead to low self-esteem and negative body image, a significant predictor for mental health issues, says Phimphasone-Brady.
Julieta Cardenas, a 33-year-old journalist from Queens, New York, gained 40lb after a PCOS diagnosis and starting medications for her physical and mental health. She has devoted ample therapy sessions to body image, but the combination of sudden weight gain, birth control and desensitizing antidepressants left her feeling “like a brain in a jar hooked up to a keyboard”. Cardenas says she doesn’t even perceive herself as “a sexual being” anymore.
Routine medical advice for people with PCOS often reinforces conventional beauty standards. Many healthcare providers encourage weight loss, as there’s some evidence that obesity may exacerbate the condition. However, dieting rarely leads to sustained results. With excess weight often part of PCOS, the effort can feel especially sisyphean. “When patients don’t reach a weight loss goal, they may feel as if they’ve failed,” says Phimphasone-Brady, especially when they’re following doctors’ instructions.
People living with PCOS also tend to experience weight bias in healthcare interactions. “Providers often hold the assumption that thin bodies are healthy and fat bodies are unhealthy,” writes Stacey L Williams in The Psychology of PCOS. When Normandie Luscher, a 35-year-old illustrator in Syracuse, went to the doctor for a persistent cough, she felt judged for her size. “The doctor was like, ‘So, tell me about what you’re eating,’” says Luscher, who’d already had bariatric surgery to treat the prediabetes she developed from having PCOS. “I was just like, ‘Why? What does that have to do with anything?’”
In lieu of evidence-based guidance on the best ways for PCOS patients to lose weight, there’s an abundance of diet advice on social media that’s both profit-driven and often grounded in misinformation. This could pose problems for a population that already has a higher risk of disordered eating.
How fertility challenges can affect mental health
PCOS is a leading cause of infertility in people of reproductive age; studies indicate that the infertility rate for those with the condition is about 15 times higher than for people without. At 38, Claire Salinda, a writer with PCOS in Los Angeles, constantly worries about her fertility. “I know my partner doesn’t love me based on whether I can keep his lineage going,” she says. “But because he wants kids, I feel pressure to deliver.” Salinda often feels less desirable because of her PCOS. “Who wants to have a baby with these ‘old’ eggs that aren’t even dropping regularly?”
Infertility can also be a significant blow to one’s sense of gender identity. When Anne Kamau, a 42-year-old salesperson from Nairobi, was diagnosed with PCOS, her gynecologist told her she might never have children. “I felt like he’d taken away something core to a woman’s life,” she says. Kamau did eventually have two children, and also started the PCOS Foundation of Kenya, which includes a WhatsApp support group of over 800 members going through similar experiences.
PCOS treatment and research have ‘long way to go’
PCOS is probably an ancient condition, writes Williams, but it wasn’t identified and labeled until 1935 – as Stein Leventhal syndrome, after the two doctors who discovered it. Almost a century later, there are still no FDA-approved drugs to directly treat this complex, multi-system syndrome that can cause lifelong ailments like type 2 diabetes, high blood pressure, uterine bleeding, heart disease and stroke. Among the 315 medical conditions that receive federal funding from the National Institutes of Health (NIH), PCOS ranks near the bottom.
“The main reason is the lack of recognition by physicians and researchers that PCOS is about more than infertility,” says Katherine Sherif, chief of women’s health at Thomas Jefferson University.
Currently, most PCOS research funding falls under the National Institute of Child Health and Human Development, which prioritizes reproductive health – only one piece of the PCOS puzzle. “It’s like an orphan; no one wants to own the research,” Sherif says, adding that it’s “reprehensible in this disorder that affects more women than diabetes and has profound effects on metabolic health”.
Limited funding for PCOS research has led to a lack of awareness and understanding among physicians. The NIH didn’t establish a working definition for PCOS until 1990, and up to 75% of people with PCOS remain undiagnosed after visiting their doctors. Sherif attributes delays to short gynecologist visits, which often miss complex conditions and the misconception that only overweight people can have PCOS. Non-gynecologists may also overlook a patient’s menstrual history, considering it irrelevant, she says. And despite their being disproportionately affected by the condition, Black women can experience further delays in diagnosis because of racial bias in medical settings.
“We have made progress, but frankly, there’s a long way to go,” says Sasha Ottey, the executive director of PCOS Challenge. “Women, and particularly PCOS patients, endure injustices of medical gaslighting, unnecessary surgeries, inaccurate and harmful medical advice and ineffective treatments that only compound the mental health burden of the condition itself.”
Treating PCOS costs an estimated $8bn annually in the US alone. This financial burden adds psychological pressure on patients already struggling with their mental health, especially in a fragmented healthcare system that creates barriers to continuous care and inflates out-of-pocket expenses. For instance, Cardenas’s $300 glucose sensors, essential for managing her insulin resistance, aren’t covered by insurance. “Being an advocate for your own care is exhausting,” she says.
Gaining recognition and finding relief for PCOS
This syndrome is getting more attention. PCOS Challenge successfully led an effort to have the condition recognized by US legislators in 2017, designating September as PCOS Awareness Month. Some drug companies are exploring new medications for the condition. And in 2023, leading researchers updated guidelines for PCOS assessment and treatment.
“There are effective therapies for mental health and research is surging to find more comprehensive treatments for PCOS,” says Phimphasone-Brady, who led a 2022 review that proved psychosocial interventions can significantly improve mental health issues related to PCOS.
Dissatisfied with my gynecologist’s efforts, I advocated for further testing. A thorough hormone panel showed I have very low progesterone, which can exacerbate symptoms like mood swings and insomnia, and a lack of bacterial diversity in my gut, which affects hormone regulation and increases inflammation. A high fiber diet and tailored supplements, on top of talk therapy and meditation, have helped my mental and physical health tremendously. Having firm data has also helped me recast my mental struggles in a more compassionate light; this is not my fault.
Instead of wondering what’s wrong with me, I now think about how to, as Phimphasone-Brady says, “make PCOS just a friendly passenger, rather than feeling like you’re on this rollercoaster ride and you don’t know where you’re going”. The prompt has helped me take better, more loving care of myself – and others I spoke to expressed similar sentiments. “I’m trying to treat my body like a dog,” Salinda, the LA writer, tells me. “That means giving it food, water, lots of pats and space to run.”
