120 Women With PCOS Discuss How They Battle Their Symptoms

Photo-Illustration: The Cut; Photos: Getty

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The symptoms creep up on you: periods that last too long or don’t come at all, acne that persists well beyond the teen years, excessive hair growth, stubborn weight gain, and an increased risk of anxiety, depression, and eating disorders. The World Health Organization estimates that polycystic-ovary syndrome, or PCOS, affects anywhere from 6 to 13 percent of reproductive-age women. The syndrome is a leading cause of infertility and is associated with the development of metabolic issues like type 2 diabetes, obesity, and cardiovascular disease as well as a heightened risk of endometrial cancer. Recent studies have even linked PCOS to cognitive decline later in life, and diagnostic rates are on the rise among younger women. While most experts think this is because there’s simply more awareness around the syndrome, researchers also believe genetics and exposure to environmental pollutants — including microplastics, chemicals in pharmaceutical and personal-care products, and endocrine disruptors like pesticides — may contribute to the development of the condition. And yet, despite its pervasiveness, PCOS is still widely misunderstood, underresearched, and woefully underdiagnosed; the WHO estimates that up to 70 percent of affected women worldwide may not know they have it.

Because PCOS is a diagnosis of exclusion, with symptoms that mimic other chronic hormonal conditions like Cushing’s syndrome and thyroid disorders, it can take many doctor’s appointments to learn you have it. Once you do get a diagnosis, a doctor might put you on birth control, advise you to eat fewer carbs and sugar, and tell you to come back to their office when you want to conceive. But many patients, especially those who struggle to lose weight because of insulin resistance or who don’t tolerate hormonal birth control, just want ways to feel better in their day-to-day lives.

As people search for the answers to their individual symptoms, online scammers are trying to fill in the information gaps: Last September, the BBC tracked the most-viewed #PCOS videos on TikTok and Instagram and found that half spread false information. Managing the condition is hard enough without influencers peddling expensive, useless supplement regimens or offering pricey “hormone coaching” with no actual qualifications. We polled 120 women about their biggest struggles with the syndrome and took their questions to a panel of doctors. Here, what we learned.

Of the women we surveyed …

Plus 20 of you said you struggled to get a diagnosis, and 23 of you said you were misdiagnosed with something else first. While being overweight is common with PCOS, about a quarter of respondents said they have lean PCOS, which means they have BMIs of 25 or below. “I have lean PCOS and have never been overweight as an adult, which led me to having a more difficult time getting diagnosed,” one said.

Weight gain was by and large the one you have the hardest time dealing with, followed by acne, excess body hair, and irregular periods.

For some of you, the trickiest part of getting a diagnosis was finding a provider willing to listen.

“I was diagnosed with lean PCOS. Each time I tell a new doctor I have PCOS, they ask me, ‘Are you sure? There’s no way. You don’t look like it.’ The first time I heard this was from an ultrasound tech who said it to me while I was in a particularly vulnerable position — I was about to get a transvaginal ultrasound, which I was receiving as a result of my history of frequent ovarian cysts. I’d already been diagnosed, and it makes you feel like, Even with an official diagnosis, you don’t believe me? The subtext is It’s all in your head. The number of times my symptoms have been chalked up to poor stress management or anxiety makes me wish I never disclosed my mental-health history in the first place.”

“I went to my OB/GYN and my primary-care doctor and told them I suspected I had PCOS; I met all the criteria and had all the symptoms, but they told me I was fine. My PCP told me I just needed to lose weight and to relax so that I’d have less of an appetite. I told her I wasn’t really eating much and that nothing had changed with my diet. She was like, ‘Sure, whatever you say.’ My OB/GYN gave me some asinine form that said, ‘If you eat five cookies a day for a year, this adds up to 15 pounds over time.’ I felt awful. I ended up relapsing in the eating disorder I’d had as a teenager. Three years later, I saw an endocrinologist who did a thorough workup and ended up officially diagnosing me. I felt validated.”

“I’ve struggled with PCOS for 20 years and am now in perimenopause. The doctor who diagnosed me in 2006, when I was 21, really scared me. She said, ‘This is incredibly serious. You’re not going to be able to have children. It’s going to put you at high risk for all of these diseases.’ I felt a ton of shame. I really internalized what she said about not being able to have kids, or having an incredibly small chance, and believed her. We were still in the early days of the internet then, so I didn’t do major searches. In my 20s, I ended up deciding I wasn’t even going to try. I grieved the experience and moved on.”

Resoundingly, you ranked GLP-1s like Ozempic and Mounjaro the most helpful. “Ozempic means I don’t have to constantly restrict to stay healthy,” said one woman who told us the drug is the only thing that really helped her insulin resistance. “My periods are more regular. My energy is better. I have less ‘puffiness’ in my face and hands and improved mental health,” said another who uses off-label tirzepatide and wishes these medications were a “first-line treatment” for PCOS. A growing body of research suggests that semaglutides and tirzepatides can help PCOS patients who have struggled to lose weight achieve healthier BMIs, more regular periods, and a lower risk of metabolic diseases, though experts say we still need long-term data about the use of these medications for PCOS management.

Birth control. “Birth control helps me with symptom maintenance and getting a regular period,” one woman told us. Several others had the same experience and added that going off the Pill led to a resurgence of symptoms and complications, including a buildup of the uterine lining. “The most helpful advice I ever received was to stay on birth control. I came off the Pill for a few years to try and ‘manage my hormones naturally’ and wound up needing an endometrial ablation and a dilation and curettage,” one respondent said.

The diabetes drug metformin. It improves insulin sensitivity and has been shown to decrease levels of androgens, a group of sex hormones that includes testosterone and maintains reproductive health. Everyone has androgens, though men naturally make more of them. Women with PCOS often experience elevated androgen levels, which can lead to symptoms like cystic acne and unwanted facial hair. Survey respondents said spironolactone, an oral blood-pressure medication that acts as an androgen blocker and is prescribed off-label for hirsutism and hormonal acne, helped out with that.

Outside of medications, respondents said lifestyle changes like regular exercise, healthy eating, sleep, stress management, and acupuncture were also helpful. But, of course, getting an endocrine consult is key to figuring out a good treatment plan. “Testing my hormones has unlocked everything — I can’t believe it took four years of being diagnosed to get someone to start regularly checking my bloodwork to see what the key drivers were,” one woman said.

Across the board, readers said advice to “just lose weight” or eat less was the least helpful. Some of you were also frustrated by being told you wouldn’t have to worry about your PCOS until you were actively trying to get pregnant. Here, the worst advice you received:

Photo-Illustration: The Cut; Photos: Getty

Navigating the ins and outs of PCOS can be tricky, and the fact that the internet is swarming with conflicting information about symptom management only adds to the confusion. These were the main questions you had about PCOS, so we asked a panel of doctors about them.

Why is it so hard to get a diagnosis?
On average, women with PCOS will end up seeing three different providers before getting diagnosed because the condition is so hard to identify and other hormonal disorders have to be ruled out first. “PCOS can present differently in different individuals,” says Jessica Chan, a reproductive endocrinologist at Cedars-Sinai. “It’s not a one-size-fits-all diagnosis. Even among scientific experts in the field, physicians, scientists, there’s no consensus as to what the diagnostic criteria are.” She recommends finding a board-certified OB/GYN or a reproductive endocrinologist, specialists who “should be trained in PCOS care.”

Why is birth control usually the go-to treatment?
We heard from many people who felt as though their doctors just put them on birth control and left it at that. Those patients worried that the medication simply masked their symptoms. But birth control does treat symptoms by decreasing your production of androgens and improving symptoms like excess hair growth and acne, according to Dr. Chan. “A lot of people get a diagnosis after they come off the birth-control pill, but that’s probably because the Pill did a good job of treating a lot of the symptoms,” she says. Birth control also helps regulate your period, which is important because if you aren’t regularly menstruating, your uterine lining can build up and possibly lead to uterine cancer, one of the conditions associated with PCOS. “The birth-control pill is nice in the sense that it can bring on that period, and it can provide some hormonal protection of the uterus,” says Dr. Chan. That said, not everyone responds well to the Pill, which can cause nausea, mood swings, and decreased libido in some patients. If you’re on the fence about birth control, consider seeing an endocrinologist, who will have a better understanding of which pill may be right for you.

Do I need to see a PCOS nutritionist?
Around 75 percent of women with PCOS struggle with insulin resistance, which can make it easier to gain weight and harder to lose it. After years of telling women with PCOS who are overweight or obese that they should reduce their caloric intake by 750 calories a day, the International PCOS Network recently came out and said there’s no evidence to suggest that restrictive diets had any effect on symptoms in the long term. The organization now says that, instead of restricting calories, patients should focus on achieving an “overall balanced and healthy dietary composition.”

But what does that mean exactly? No one diet fits every PCOS patient, but generally a low-glycemic-index diet that’s rich in whole foods, fiber, protein, and healthy fats, like the Mediterranean diet, can help stabilize blood sugar and improve symptoms of PCOS, says Pardis Hosseinzadeh, an OB/GYN, infertility specialist, and reproductive endocrinologist at Johns Hopkins Fertility Center. Instead of eating highly processed carbs that spike your blood sugar, like white bread, focus on complex carbs such as potatoes, legumes, and whole grains, which take longer for your body to digest and maintain steady blood-sugar levels. “The PCOS diet is very similar to the type 2 diabetes diet, which is essentially low carb, not no carb,” says Lynsey Johnson, a doctor of nursing practice at the telehealth clinic PCOS Sisters. “Keto” — a high-fat, extremely low-carb diet that encourages the body to burn fat for fuel rather than carbs — “is very bad for PCOS because when you reintroduce a healthy diet, you get rebound weight gain.”

That said, patients with PCOS have a higher risk of disordered eating, so it can be helpful to work with a nutritionist or dietitian who understands PCOS and can help you develop a healthy and sustainable eating plan without falling into “negative body image or unhealthy relationships with food,” says Dr. Hosseinzadeh. If you’re not sure where to start looking for a nutritionist, ask your doctor if they can refer you to someone, or check out the Academy of Nutrition and Dietetics database to find a credentialed provider near you.

Are rates of PCOS really rising?
Around 5 million to 6 million women in the United States have PCOS. Globally, prevalence of the disorder rose from around 35 million in 1990 to nearly 66 million in 2021. Within the U.S., diagnoses have increased among patients between the ages of 16 and 20; some experts think rising obesity rates may be a factor in that trend. “Obesity itself can worsen PCOS symptoms, therefore making the diagnosis more common,” says Dr. Chan. Experts aren’t sure if the syndrome is becoming more widespread or if it’s simply being diagnosed more as patients learn more about it. “There’s a lot of different numbers out there, but we don’t know if it’s actually rising biologically,” says Dr. Chan. “People are becoming more aware and are more likely to see their doctor.” And patients aren’t the only ones with more awareness. Primary-care providers and OB/GYNs also have more understanding about PCOS, says Dr. Hosseinzadeh, as well as more clearly established diagnostic criteria and tools.

Does having PCOS mean I’ll struggle with fertility?
Though the irregular periods that are a hallmark of PCOS can make it harder to get pregnant, having the syndrome doesn’t necessarily mean you’ll have fertility problems. Studies show that women with PCOS are just as likely as their counterparts without it to get pregnant, even if it might take longer. In other words, don’t panic. “There are a lot of great medications to help women with PCOS ovulate with regularity, and if we’re able to get women with PCOS to ovulate regularly, then their fertility should be the same as their same-age counterparts,” says Dr. Chan. If you have PCOS, experience irregular periods, and want to start a family, she recommends seeing a fertility specialist “on the earlier side” so you can get evaluated and treated as soon as possible: “It’s not something to sit on.”

Many times, the treatment is straightforward. Dr. Hosseinzadeh prescribes oral medications like Clomid or letrozole, which can help induce ovulation without further fertility treatments like IUI or IVF. “Having PCOS does not equal having infertility,” she stresses.

What is lean PCOS, and is it harder to diagnose? 
Lean-PCOS patients have BMIs of 25 or under and account for roughly one-third of PCOS cases. Studies describing this patient population have been around since the ’90s, though the diagnosis became more popular in the aughts, according to Dr. Chan. Lean-PCOS patients can still have insulin resistance, higher androgen levels, and an increased risk of diabetes. However, the fact that they aren’t overweight — a more classic PCOS symptom — means they often receive delayed diagnoses and sometimes don’t find out they have the condition until they run into issues conceiving. “A lot of patients come to me after having been seen by other clinicians, and they were told they couldn’t have PCOS because they were at a normal weight, which is incorrect — weight is not one of the diagnostic criteria,” says Dr. Chan. “The symptoms tend to be worse in women who are overweight, but being lean absolutely doesn’t exclude the diagnosis,” says Dr. Elise Brett, an endocrinologist who runs a private clinic in Manhattan.

If you suspect you’re experiencing symptoms of PCOS, it can be overwhelming to figure out how — and where — to get the proper treatment. Here, a road map to help.

1. Start with your primary-care doctor or OB/GYN. Get specific about your symptoms, and ask your doctor why you’re experiencing them — don’t take “It’s normal” for an answer. “A lot of patients might just tell their gynecologist that they have irregular periods and then get put on the Pill without diving into why they have irregular periods,” says Dr. Brett. Don’t be shy about the symptoms you most want help with: “Are you having facial hair, acne, or hair loss? Those are not necessarily things that every woman is going to come forward about, but they’re things that can get worse over time.”

2. Ask your doctor for testing to rule out other conditions. Blood tests to measure hormone levels and glucose-tolerance tests to see how your body responds to sugar can rule out other conditions that PCOS resembles: Cushing’s, pituitary and thyroid conditions, excess steroid production, enzyme deficiencies, and hypothalamic amenorrhea, a condition where the brain tells your period to stop.

3. If all else fails, ask for a referral to an endocrinologist. Hitting a roadblock? If your PCP or gynecologist is reluctant to do tests, or just doesn’t seem particularly knowledgeable about the syndrome, ask for an endocrine consult. “Some gynecologists will be very proactive about the evaluation; some won’t,” says Dr. Brett. “Ask for an endocrinologist — this is their bread and butter.” Even if you have a good doctor who’s knowledgeable about PCOS, Dr. Chan recommends getting an endocrine consult anyway: “It’s what I do to make sure that diagnosis is correct.”

4. If you get a birth-control prescription, push for one that’s right for you. If you have negative side effects, ask your endocrinologist to prescribe you another pill. Keep in mind that “there are many, many different birth-control-pill options” out there, according to Dr. Brett. There are also treatment options other than birth control that can help with menstrual irregularity and protect the uterine lining. For instance, if you can’t or don’t want to be on a pill with estrogen, you can ask about progesterone-secreting IUDs or about taking cyclic progesterone — which involves taking the hormone during certain phases of the menstrual cycle to induce regular bleeding — if you don’t have a period at least once every three months. For symptoms like acne, ask about spironolactone, or Winlevi, a prescription acne cream that helps acne caused by excess androgens.

5. Stick to providers with actual qualifications. There’s no shortage of TikTok “hormone coaches” peddling expensive diet and supplement programs that claim to help you naturally reverse your PCOS. Save your money. “There’s nothing that a specific ‘coach’ can help teach you,” says Dr. Brett. If you’re working with a registered dietitian or fitness coach on lifestyle modifications, that’s fine. Otherwise, if someone isn’t a licensed health-care provider, preferably with special training in endocrinology and, particularly, reproductive endocrinology, steer clear.