In 2008, microbiologist Sasha Ottey saw her OB-GYN because she had missed some periods. The doctor ran blood tests and gave her an ultrasound, diagnosing her with polycystic ovary syndrome (PCOS). She also told her not to worry, referred her to an endocrinologist (a doctor who specializes in hormones), and told her to come back when she wanted to get pregnant.
“I found [that] quite dismissive because that was my reason for presenting to her,” Ottey tells PGN. “I felt that she was missing an opportunity to educate me on PCOS, and that was just not an accurate message: Missing periods can lead to other serious, life-threatening health conditions.”
During the consultation with the endocrinologist, Ottey was told to lose weight and come back in six months. “Again, I felt dismissed and left up to my own devices to understand this condition and how to manage it,” she says.
Following that experience, Ottey began researching and found that thousands of people around the world had similar experiences with their PCOS diagnoses, which led her to start and lead the advocacy and support organization PCOS Challenge.
PCOS is the most common hormonal condition affecting people with ovaries of reproductive age. In the United States, one in 10 women of childbearing age have the condition, which affects the endocrine and reproductive systems and is a common cause of infertility. Yet, the condition is significantly underdiagnosed—especially among people of color—and under-researched.
Read on to find out more about PCOS, what symptoms to look out for, what treatments are available, and useful resources.
What is PCOS, and what are its most common symptoms?
PCOS is a chronic hormonal condition that affects how the ovaries work. A hormonal imbalance causes people with PCOS to have too much testosterone, the male sex hormone, which can make their periods irregular and cause hirsutism (extra hair), explains Dr. Melanie Cree, associate professor at the University of Colorado School of Medicine and director of the Multi-Disciplinary PCOS clinic at Children’s Hospital Colorado.
This means that people can have excess facial or body hair or experience hair loss.
PCOS also impacts the relationship between insulin—the hormone released when we eat—and testosterone.
“In women with PCOS, it seems like their ovaries are sensitive to insulin, and so when their ovaries see insulin, [they] make extra testosterone,” Cree adds. “So things that affect insulin levels [like sugary drinks] can affect testosterone levels.”
Other common symptoms associated with PCOS include:
- Acne
- Thinning hair
- Skin tags or excess skin in the armpits or neck
- Ovaries with many cysts
- Infertility
- Anxiety, depression, and other mental health conditions
- Sleep apnea, a condition where breathing stops and restarts while sleeping
What causes PCOS?
The cause is still unknown, but researchers have found that the condition is genetic and can be inherited. Experts have found that exposure to harmful chemicals like PFAs, which can be present in drinking water, and BPA, commonly used in plastics, can also increase the risk for PCOS.
Studies have shown that “BPA can change how the endocrine system develops in a developing fetus … and that women with PCOS tend to also have more BPA in their bodies,” adds Dr. Felice Gersh, an OB-GYN and founder and director of the Integrative Medical Group of Irvine, which treats patients with PCOS.
How is PCOS diagnosed?
PCOS is diagnosed through a physical exam; a conversation with your health care provider about your symptoms and medical history; a blood test to measure your hormone levels; and, in some cases, an ultrasound to see your ovaries.
PCOS is what’s known as a “diagnosis of exclusion,” Ottey says, meaning that the provider must rule out other conditions, such as thyroid disease, before diagnosing it.
Why isn’t more known about PCOS?
Research on PCOS has been scarce, underfunded, and narrowly focused. Research on the condition has largely focused on the reproductive system, Ottey says, even though it also affects many aspects of a person’s life, including their mental health, appearance, metabolism, and weight.
“There is the point of getting pregnant, and the struggle to get pregnant for so many people,” Ottey adds. “[And] once that happens, [the condition] also impacts your ability to carry a healthy pregnancy, to have healthy babies. But outside of that, your metabolic health is at risk from having PCOS, your mental health is at risk, [and] overall health and quality of life, they’re all impacted by PCOS.”
People with PCOS are more likely to develop other serious health issues, like high blood pressure, heart problems, high cholesterol, uterine cancer, and diabetes. Cree says that teenagers with PCOS and obesity have “an 18-fold higher risk of type 2 diabetes” in their teens and that teenagers who get type 2 diabetes are starting to die in their late 20s and early 30s.
What are some treatments for PCOS?
There is still no single medication approved by the Food and Drug Administration specifically for PCOS, though advocacy groups like PCOS Challenge are working with the agency to incorporate patient experiences and testimonials into a possible future treatment. Treatment depends on what symptoms you experience and what your main concerns are.
For now, treatment options include the following:
- Birth control: Your provider may prescribe birth control pills to lower testosterone levels and regulate your menstrual cycle.
- Lifestyle changes: Because testosterone can affect insulin levels, Cree explains that regardless of a patient’s weight, a diet with lower simple carbohydrates (such as candy, sugar, sweets, juices, sodas, and coffee drinks) is recommended.
“When you have a large amount of sugar like that, especially as a liquid, it gets into your bloodstream very quickly,” adds Cree. “And so you then release a ton of insulin that goes to the ovary, and you make a bunch of testosterone.”
More exercise is also recommended for both weight loss and weight maintenance, Cree says: “Food changes and better activity work directly to lower insulin, to lower testosterone.” - Metformin: Even though it’s a medication for type 2 diabetes, it’s used in patients with PCOS because it can reduce insulin levels, and as a result, lower testosterone levels.
What should I keep in mind if I have (or think I may have) PCOS?
If your periods are irregular or you have acne, facial hair, or hair loss, tell your provider—it could be a sign that you have PCOS or another condition. And ask questions.
“I call periods a vital sign for women, if you’re not taking hormones,” Cree says. “Our bodies are really smart: Periods are to get pregnant, and if our body senses that we’re not healthy enough to get pregnant, then we don’t have periods. That means we’ve got to figure out why.”
Once you’re diagnosed, Ottey recommends that you “don’t go through extremes, yo-yo dieting, or trying to achieve massive weight loss—it only rebounds.”
She adds that “when you get this diagnosis, [there’s] a lot that might feel like it’s being taken away from you: ‘Don’t do this. Don’t eat this. Don’t do that.’ But what I want everyone to think of is what brings you joy, and do more of that and incorporate a lot of healthy activities into your life.”
Resources for PCOS patients:
- AskPCOS: A guide designed by experts on the condition that helps answer all your questions about it and how to manage it.
- PCOS Challenge: An advocacy and support organization for people with PCOS.
- PCOS Patient Communication Guide: A tool for better communication with your health care providers.
- Polycystic Ovary Syndrome Question Prompt List: Questions you can ask your provider about PCOS.
For more information, talk to your health care provider.