diving into women's health, hormones, and PCOS
six women share their stories
Hii, and happy September! We’re entering pumpkin spice season, baby PCOS awareness month, a cause close to my heart ever since I was diagnosed two years ago.
Today’s essay offers stories, perspectives, and wisdom from six women with PCOS. I hope you find it insightful (but of course, it’s no substitute for the counsel of a medical professional!).
Don’t forget to tap the ❤️ button if you like being here. Happy reading 🧡🍂
We often associate hormones with extremes: pendulous mood swings, hot bursts of menopause, the nightmarish awkward days of puberty. That’s because it’s typically only when our hormones are in flux that we notice them.
Otherwise, these teeny chemical messengers work invisibly, day and night, to keep things running smoothly. Tasked with our growth and development, metabolism, mood, sexual function, and reproduction — critical parts of owning a human body — their functioning is essential to us feeling healthy and happy.
But when thrown off balance, our whole human system can erupt in chaos.
In the case of polycystic ovarian syndrome (PCOS), ovaries produce an abnormal amount of androgens, or male sex hormones. This imbalance disrupts the menstrual cycle and can contribute to a range of physical, mental, and emotional symptoms.
That’s why irregular periods are often the first warning sign of PCOS. It’s also why PCOS is a leading cause of female infertility: the hormonal imbalance disrupts ovulation, the one window in a woman’s cycle where she can become pregnant.
Before I was diagnosed, I was blissfully unaware of how intricately our hormones affect our minds and bodies throughout our entire lives (not just during puberty!). When I quit birth control, I unwittingly opened the door for a tidal wave of acne, mood swings, sleep disruptions, and other mental and physical changes to enter. The experience was wildly confusing, and then intensely lonely.
But once I learned that one in ten women also have PCOS, I realized it didn’t have to feel that way.
To write this essay, I reached out to six women with PCOS to learn more about their stories. I asked how their diagnosis affects their lives, what they wish more people knew about this condition, and what tools have helped them soothe and recalibrate their hormones.
Because every body is unique, PCOS often manifests differently in different people; when left untreated, symptoms can range from mild to severe. Of the six women I interviewed, 83% experienced irregular periods; 67% struggled with acne, weight gain, anxiety, and/or depression; 50% dealt with hair loss and hirsutism (excessive hair growth on the face, chest, and back); and 16% had experienced insomnia and/or weight loss.
Hmm. I sometimes struggle with [acne, weight changes, depression…]. How do I know if I have PCOS?
PCOS is tricky to diagnose because it’s characterized by many separate symptoms, for which patients will often consult separate providers. It’s not uncommon for someone to visit a dermatologist for their acne, a therapist for their anxiety, and a gynecologist for their missing period before someone connects the dots and goes: Aha! Have you ever heard of PCOS?
There are three diagnostic criteria for PCOS:
Irregular periods
Abnormally high levels of androgens (this can be tested via bloodwork)
Multiple ovarian cysts (this can be tested via pelvic ultrasound)
To be diagnosed, you must meet at least two out of three criteria. It sounds simple, but women often experience a disconnect between their lived experiences and the care they receive from health providers.
Francesca, a 29-year old Product Manager from London, says that when she was 18 years old, doctors informed her of multiple cysts on her ovaries. However, she was “never told about the syndrome,” and did not receive a formal diagnosis until eight years later, when she was 26 years old.
Bailey, 25, began noticing symptoms when she was 17. But when she told her mom, a nurse, she “would always dismiss [them].” This sentiment was echoed across interviews: Gemma, 25, remembers her “symptoms were often minimized, often reduced to ‘just a bad period.’” She adds, “it took me a long time to find a doctor that could see the full picture when it came to my health. My gynecologist seemed lost most of the time…I wish I had better access to doctors who understood.”
PCOS is typically linked to acne, for example, but the connection is often missed in healthcare settings. Natalie, 34, struggled with breakouts for years prior to her diagnosis, in retrospect finding it “frustrating that none of the doctors [she saw]…mentioned PCOS as a possible cause.” Kate, 32, was put on the contraceptive pill for her acne when she was 15 years old. She “never realized an underlying condition was there, or how [PCOS] was affecting my body.” She continues: “I wish I knew from a younger age so that I could have been ahead of it by now.” Sophie, 39, “struggled with acne for a decade, and no one even mentioned PCOS as a possibility.” She adds: “I wish I could have controlled my acne sooner. It affected my social life and confidence so much. Had I known what caused it, I could have treated it and been more confident as a teen and young adult.”
“I wish I had better access to doctors who understood everything about my health.”
Unfortunately, it’s not uncommon for women’s pain and symptoms to be dismissed by doctors. Compared to men, women often suffer from symptoms longer and are less likely to receive effective, timely treatment. This gender disparity is a glaring flaw in our healthcare system — and dates back to ancient Greece, when women were “medically defined as faulty, defective, deficient.”
PCOS symptoms are distressing. Quality and timeliness of care can influence a woman’s fertility outcomes, mental health, and self-esteem. Most women I spoke with felt frustrated by the lack of comprehensive, detailed, and useful information available to them regarding their diagnosis.
Mystery still shrouds what causes PCOS. It’s unclear why different treatments work differently for different people, and how to best manage the condition through different life stages. Many facts and opinions conflict with each other: for example, birth control can help treat PCOS, but could also make it worse via its effects on metabolism. We don’t completely know because data is “inconsistent and scarce,” leaving us with “many unanswered questions” about the long-term effects of hormonal contraceptives on insulin, how it reacts with metformin, and how it affects women’s risk for endometrial cancer.
I can’t help but wonder if that’s because PCOS is, inherently, a women’s issue. It’s no secret that the medical system works better for men. Historically, medical studies have excluded female subjects, instead studying men’s health outcomes and then extrapolating them to women’s bodies. But men’s and women’s bodies are different, even at a cellular level — meaning that biologically, our diseases, treatments, and chemicals might vary too. Unfortunately, because a vast majority of medical research and funding has been directed towards men’s health, many “women’s diseases are often missed, misdiagnosed or remain a total mystery.”
Because a vast majority of medical research and funding has been directed towards men’s health, many “women’s diseases are often missed, misdiagnosed or remain a total mystery.”
If this makes you feel fired up, join the club. Even though it’s taken a while — the government only ordered the inclusion of female subjects in clinical research in 1993 — progress is slowly unfolding. Spreading awareness of and advocating for research and funding for women’s health conditions, such as PCOS, is critical to that progress.
Okay, sounds like there’s a lot we don’t know. What do we about treating PCOS?
One of the only certainties in treating PCOS is that everyone is different. We all possess unique genetic makeups, upbringings, and home environments, so finding the right solutions can require a degree of patience and experimentation.
The first line of defense offered by medical practitioners is typically hormonal contraceptives, which can keep symptoms at bay by shutting down your ovaries’ production of sex hormones and replacing them with synthetic analogues. Metformin, another pharmaceutical, helps regulate insulin and can also relieve symptoms. When trying to conceive, Clomid can help induce ovulation.
Treatment beyond pharmaceuticals exists too, but isn’t always vocalized by providers. When she was diagnosed, Francesca’s doctors gave her “three options: the pill, metformin, or losing weight. Without further explanation.” She wasn’t informed of lifestyle interventions — such as dietary changes, stress reduction, and supplements — which she now successfully uses to manage her PCOS symptoms.
For the most part, lifestyle changes for PCOS mean committing common health advice to heart: eating nutritious, colorful meals, prioritizing sleep and rest, exercising regularly. When applied consistently, these practices work to reduce stress, stabilize blood sugar, and keep hormones happy.
The key here is patience and consistency — and even then, every body is different, so you may need additional support. That is totally fine. Figuring out what works for you and your body will take some time and experimentation. Be gentle with yourself as you learn.
Of course, that’s easier said than done: the learning process can often feel overwhelming. When symptoms intensify, one might become hungry for quick solutions — and there are plenty of un-credentialed ‘experts’ and ‘coaches’ who preach more extreme interpretations of lifestyle changes.
Drastic dietary changes — like eliminating gluten, dairy, or carbohydrates — are often toted as silver bullets for managing PCOS. But eliminating gluten typically only poses health benefits to those with celiac disease or a gluten sensitivity. Otherwise, a gluten-free diet doesn’t guarantee results — but is likely to cost you more. For most, dairy is completely healthy in moderation; and while a ketogenic diet might help specific maladies, it also poses potential health risks and its restrictive nature renders it unsustainable for most.
Extreme diets and exercise plans might sound appealing in their simplicity, but typically offer little substance or long-term relief. In other words: beware of ‘experts’ who might excel at marketing, but lack credentials and/or investment in your long-term health.
A health coach herself, Natalie has seen certain PCOS coaches advise ‘going keto’ or cutting out gluten and dairy, only to “blame and shame their clients for not being able to follow the plan…instead of giving them advice that is realistic and maintainable.”
That’s not to say that certain dietary changes, supplements, and hormone teas won’t help — in fact, each of these solutions can contribute to a well-rounded approach to treating PCOS. But treatment should also consist of small, supportive changes applied consistently, day-over-day.
The right treatments for you might change at different stages of your life. The most important step you can take is to find a medical professional that you trust and is invested in your mental, emotional, and physical health. You deserve nothing less!
Check out the Resources section below for more ideas, books, and clinics focused on women’s health, hormones, and PCOS. And if you’re looking for a place to start, here are some evidence-based tips and tools:
Include plenty of nutrient-dense foods in your diet. Adopt a mindset of adding foods in rather than cutting them out. Prioritize protein, healthy fats, and fruits and veg to balance your blood sugar and keep hormones happy.
Exercise often. Moving your body helps regulate insulin levels, reduce stress, and showers you with mood-boosting endorphins.
Prioritize sleep and rest, which boosts your mood and immune response, as well as helps regulate your blood sugar and stress levels.
Incorporate stress-relievers into your daily routine, like yoga, meditation, outdoor walks, hot baths…anything to calm your nervous system. Stress increases cortisol, which can aggravate PCOS symptoms. (Of course, stress is also an inevitable part of being human — so please be kind to yourself!)
Find and work with a doctor that you trust. Under their guidance, discuss what treatment options work best for you, your lifestyle, and your budget.
Above all, remember to be patient with and kind to yourself. Finding solutions is a lifelong journey. Listen to the wisdom of your body. We’re in this for the long haul, baby.
Speaking of the long haul…what about fertility?
Irregular cycles and ovulation means that women with PCOS typically have more difficulty conceiving and carrying a pregnancy to term. But, as Sophie reminds us: having PCOS “does not mean you can’t have kids.” Pregnancy might just require more planning and care.
The ability to plan ahead for pregnancy is one reason why receiving a timely diagnosis is so important. Some women with PCOS, like Sophie, are able to conceive immediately; for others, medical interventions like IVF and surrogacy can be immensely helpful. Either way, receiving care for PCOS as early as possible increases chances for successful pregnancy and family planning.
Of course, it’s important to receive timely healthcare for reasons beyond fertility, too It’s not uncommon for someone to hear “Come back when you want to get pregnant!” upon diagnosis — but not everyone with PCOS shares that desire.
As Natalie puts it, “As someone who is not planning on having children, I've found it frustrating that many [doctors] assume the only issue I want to address is fertility.” PCOS comes with mental, emotional, and physical challenges that require continual support. That’s why finding a provider that sees you as an individual — and works to assess and treat your health as such — is so important.
Chronic illness is hard — but we can learn from hard things.
Living with PCOS can be frustrating, inconvenient, and at times debilitating. But, as with all challenges, it also offers us the gifts of wisdom and perspective.
Getting to know your body means learning how to be your own advocate. Gemma’s experience with PCOS helped her “learn how to stick up for [herself]” and what she’s feeling — an important skill in a healthcare setting that might be quick to minimize or dismiss symptoms, PCOS-related or otherwise.
There’s also the power of cultivating a closer relationship with your body. Francesca shares that since her diagnosis, “getting to know [her] body has been… life-changing.”
Natalie agrees: “I'm grateful for my PCOS because it helped me learn about nutrition, exercise, and health. My body gives me crystal clear signals about what is healthy for it and what is not…if it weren't for my PCOS, I would probably be living an unhealthy lifestyle right now, unknowingly setting myself up for health issues later on.”
“I'm grateful for my PCOS because it helped me learn about nutrition, exercise, and health. If it weren't for my PCOS, I would probably be living an unhealthy lifestyle right now, unknowingly setting myself up for health issues later on.”
While coping with issues like mental health and fertility can feel isolating, community can help ease the burden. Surround yourself with a support system who can guide you through obstacles, whether in person or online. You never have to face the hard times alone.
Resources on women’s health, PCOS, and hormones:
The Tia Clinic, a comprehensive in-person and virtual women’s health care clinic
The UCSF Multidisciplinary Polycystic Ovary Syndrome (PCOS) Clinic, which offers an integrated approach to treating polycystic ovarian syndrome
The PCOS Newsletter, a weekly newsletter that answers complex PCOS questions in a concise and easy-to-understand format, by Francesca Abalasei
The Period Repair Manual, a guide to better periods using natural treatments, by Dr. Lara Briden
Hormone Intelligence, a book that educates readers on hormonal health and the root causes of common gynecologic conditions, by Dr. Aviva Romm
The PCOS Girls, a podcast where two women with PCOS share their experiences — their stories and humor often made me feel less alone in my journey (and who doesn’t love an Australian accent?!)
This newsletter! My hope for girlhood is to create a community that supports one another in whatever it is we’re facing. Please feel free to share, comment, and engage — we’re here for you ❤️
Wishing you lots of love,
Eden
Thank you for shining a light into an overlooked, misunderstood and inadequately diagnosed and treated corner of women’s health. I got though nursing school without learning anything about it - and you’ve done a beautiful job filling in the outlines of a syndrome that should receive greater attention -- both from the lay public who may be affected by it as well as the medical professionals responsible for detection and treatment! Brava, Eden.
I read this all the way through because it’s written by my grandniece and I need to know what she’s going through. It brought to mind a brilliant lawyer whose work I supervised 30-40 years ago who had surgery for a similar disorder. She is now the mother of two brilliant children, a law Professor, a UN driven nation builder, a former USSC fellow and a world-class adventurer.
My point ? This article reveals its author to be a great researcher/investigator/writer. Eden, you will deal with this in whatever is the right way for you. Your community will be behind you 100%. Thanks for opening my eyes to gender inequality in healthcare. You can handle this.