What doctors wish patients knew about polycystic ovary syndrome

Polycystic ovary syndrome (PCOS) is one of the most common causes of female infertility. It affects between 6% and 12% of women of reproductive age in the U.S. But it is more than just that. PCOS is a lifelong health condition that continues far beyond a woman’s childbearing years, according to the Centers for Disease Control and Prevention.

This complex hormonal disorder that often includes irregular menstrual cycles and excess weight is often misunderstood and misdiagnosed, significantly affecting a woman’s health and well-being. Knowing more about PCOS not only aids in early detection, but also helps patients make informed decisions about their health.

The AMA’s What Doctors Wish Patients Knew™ series provides physicians with a platform to share what they want patients to understand about today’s health care headlines.

For this installment, three physicians took time to discuss what patients need to know about PCOS. They are:

• Keisha Callins, MD, MPH, an ob-gyn at Community Health Care Systems Inc, and an alternate delegate in the AMA House of Delegates for the Medical Association of Georgia.
• Mary LaPlante, MD, an ob-gyn who practices in Cleveland and serves on the AMA Council on Science and Public Health.
• Kelsey J. Sherman, MD, a family physician at Green Mountain Partners for Health in Lakewood, Colorado.

“The word polycystic or PCOS sounds a little scary, so when I describe it to patients, I tell them it looks like there’s popcorn all over the ovary,” Dr. Callins said. “So, as opposed to the ovary looking like an egg that is round and white, it looks like small cysts everywhere.

“And they’re not cysts that are at risk of rupturing or causing a problem. It’s just that the anatomy of the ovary is different and that’s what’s changing the hormonal levels,” she added.

“It really all comes down to understanding the concept of insulin resistance, which can feel like an overwhelming concept when you’re first introduced to it,” Dr. Sherman said. “Insulin is our hormone that we all use to process carbohydrates, sugar and—to a lesser extent—proteins.

“And when you have PCOS, your body doesn’t process insulin as effectively, so you need more of it,” she added. “Then the downstream effects of that are really what creates all of the symptoms that patients experience and makes this a really hard condition to live with for many people.”

Because insulin is too high, “that makes your ovaries overproduce testosterone,” Dr. Sherman said. “So, insulin resistance puts you at higher risk for diabetes, heart disease, stroke, certain types of cancers and autoimmune conditions.”

“If we can lower a person’s insulin levels, we can significantly improve their symptoms,” she said. “Metformin is the medication that we use and is really effective for a lot of people with PCOS.”

“In women with PCOS, they can have oligomenorrhea—decreased menstrual cycles—or irregular and heavy bleeding,” Dr. LaPlante said. “Once you have your first period, give it two to three years to regulate out.”

For girls who have fewer periods, “they’re going to be more likely to have long-term problems with ovulation and regular cycles,” she said. “The long-term problems are secondary to the fact they are not ovulating.”   

“I have women who will go through four months without a cycle, six months without a cycle and then when they do have a cycle,” it can be extraordinarily heavy, Dr. Callins said. “Now not everyone who has irregular periods has PCOS, but cycle irregularity is a big symptom.” 

“If you're having irregular cycles, then follow up with your ob-gyn or your family medicine physician to find out whether or not anything else needs to be tested or ruled out,” she said.

“I always tell my patients: Your ovaries are just fine,” said Dr. Sherman, emphasizing “there’s nothing wrong with your ovaries. It’s more the environment that they’re in.” 

“So, your ovaries are trying to ovulate, they’re trying to do their job and because there’s so much testosterone around, those eggs don’t ever fully ovulate,” she said. “They get stalled and that’s what we see in the ultrasound.”

“People with PCOS actually have more eggs than normal. Their fertile years last longer and it’s because all of those skipped cycles they have a really big egg reserve,” Dr. Sherman said. “So, they actually maintain their fertility for a longer period of time. They’re more likely to be able to get pregnant in their early 40s, but the time to get there can take longer.”

“A big part of testing for PCOS and the lab work is to rule out other causes,” said Dr. Sherman. “We want to make sure you don’t have a testosterone secreting tumor, for example, which can occur on people’s adrenal glands.”

“There’s a certain condition called congenital adrenal hyperplasia that we rule out as well with a lab,” she said. “We also want to make sure your thyroid, blood sugars, cholesterol, liver and kidney labs all look OK.”

“That’s putting together this whole picture of your thyroid and prolactin. Those are two reasons that your periods can become irregular,” Dr. Sherman explained. “I also test people for their insulin because I want to know if you’re making more insulin than you should.”

“So, we really put together all these labs and we rule out other causes. And once many things have been ruled out, then it leaves PCOS as the remaining diagnosis,” she said.

“What I hear very commonly is: ‘They told me I would never get pregnant,’” Dr. Callins said, noting that “a lot of my young patients are not interested in birth control because they don't think that they can get pregnant. It impacts their reproductive decision-making because that's the first thing they hear and it's really unfortunate.”

“The fertility rate is different—about 85% for the general population and about 50% for the PCOS population with frequent unprotected sex for a year,” Dr. LaPlante said. There are patients “with PCOS who have made the decision to just not do any intervention, not take birth control and they're the ones who will go years and years and think they can't get pregnant and use that as the reason not to have birth control.

“And they'll be the ones who end up pregnant and surprised because they've had irregular periods,” she added. “Sometimes they go for lengths of time without periods, so if they miss their period for a while, they may not notice, or they don't think twice about it and then they suddenly have something happen and they end up pregnant and they find out late and then they haven't seen gotten prenatal care.”

But “if we can get a person to ovulate more regularly, then their chance of getting pregnant goes up dramatically,” said Dr. Sherman, noting that “people with PCOS actually have more eggs than normal, so their fertile years last longer and it’s because all of those skipped cycles that they have a really big egg reserve.

“So, they actually maintain their fertility for a longer period of time and they’re more likely to be able to get pregnant in their early 40s. But the time to get there can take longer,” she added.

“I’ve got plenty of patients who have lost weight and got pregnant and had multiple babies,” Dr. Callins said. “And that’s why getting away from the perception of PCOS as a disease is very important. It really is just a condition that can be managed based on symptoms.”

When looking at symptoms of PCOS, “facial hair is a pretty common thing,” Dr. Callins said. “However, if a patient mentioned that to me, the first thing I’m going ask them is if anyone else in their family has facial hair because sometimes it’s hereditary and it’s not PCOS.”

“So, it can be just that the women in the family have a mustache and so you have one too,” she said. “That is why the family history is important.”

“If facial hair is an issue and testosterone levels are an issue, then sometimes we use birth control for that too,” Dr. Callins said. “But also, some of that is aesthetic too. So, I’m having conversations with my patients about investing in laser treatment or waxing to help manage the aesthetic part of what may happen sometimes with that hormonal imbalance.”

“How information is communicated is very critical,” said Dr. Callins. “I meet young patients in their 20s who were told they had PCOS when they were in their teens and they have been walking around with a fog because they feel like they have this thing and it can impact their mental health, especially if they’re concerned about future fertility.”

For example, “depression is at four times the average risk. Anxiety's five times and suicide's actually seven times the average risk,” said Dr. Sherman. “So, when we talk about PCOS being full body, it's not just the trouble getting pregnant, it's really how this affects people in their day-to-day life.”  

“Seek the medical help and support that you need to work through the physical or emotional challenges that you may encounter while managing your PCOS symptoms,” said Dr. Callins. “The more you know about how PCOS can affect your body—such as your changes in your skin or cycle or weight—puts you in a mindset that is dedicated to conquering your challenges.”

“While nutrition and exercise are always critical parts of a healthy lifestyle overall and part of weight loss, sometimes a person needs more support than that,” Dr. Sherman said. “And we know that as you try to lose weight, your hunger goes up, your metabolism goes down and your body really fights and sabotages you to get you back to your starting weight.

“It can feel like this losing battle because we’re saying you have to eat smaller and smaller and smaller portions while your hunger and cravings go up the whole time,” she added. “There are certain older medications that are appetite suppressants that can work really well and are safe for people who have PCOS.”

There are also “newer medications out that are the GLP-1 agonists with names like Ozempic, Wegovy or Mounjaro,” Dr. Sherman said. “And those are all really powerful because they target that hormonal pathway, that insulin pathway that we know is already abnormal when you have PCOS.

“These can be really powerful agents because it allows people to lose weight without feeling miserable in the process,” she said. “Their hunger stays quiet, their cravings stay quiet and then they can follow these different nutrition plans without feeling like they’re sacrificing their happiness.”

But it is important to note that these medications are not approved for the treatment of polycystic ovary syndrome. They are approved for treatment of either type 2 diabetes or obesity. Also, they are not recommended for women who are attempting pregnancy and should be discontinued when a woman becomes pregnant.

“One of the issues with medications used for weight loss is that they should not be used without a plan for behavior modification,” Dr. Callins said. “Losing weight involves using as many available tools to not only lose weight but to maintain that weight loss.”

“Not everybody has time to do an exercise regimen. So, what I recommend for exercise is if you can get some cardio in, that’s good,” Dr. LaPlante said. “And if you can’t, then look at your day and find out how you can put increased activity in your day.

“Whether it’s getting up and walking between tasks, using the stairs more often, doing five jumping jacks in the morning or jump roping, whatever people can build into their day that gets them moving then burn the calories is important,” she added.

“Additional benefits from more movement can include improvement in mood and sleep. Having an accountability partner can make a difference as well,” Dr. Callins said. “Get creative—join a dance class, learn a new sport, try yoga, and then challenge yourself to train for a 5K race.”

“A healthy diet is important with an active lifestyle or exercise to maintain a healthy weight,” Dr. LaPlante said, noting that “because PCOS is linked to insulin, and thus the increased risk of diabetes, I recommend watching carbohydrates.”

“Diet plays a really big role. I advocate for balanced-plate eating, where I want people to be able to visually look at their plate and make sure they’re getting what they need without feeling they need to count and weigh their food,” Dr. Sherman said. “Visually, you want one-half of your plate to be full of non-starchy vegetables.”

 “Then a quarter of your plate is a lean protein, and a quarter of your plate is a complex carbohydrate, especially if we can do whole foods like a sweet potato or lentils or beans,” she said. “But I also advocate for balance.”

“Balanced plate eating not only means the actual food groups on your plate are balanced, but also there is room for sugary foods and more processed foods sometimes,” Dr. Sherman said. “But about 80% of the time you want to be eating your veggies and lean proteins and 20% of the time allowing yourself to have a little more flexibility with your diet without guilt.”

“Set yourself up for success by planning ahead. It seems much easier to make unhealthy food choices out of convenience,” Dr Callins said. “There are many health benefits to be gained by moving to a plant-based lifestyle and believe it or not, this does not mean that you have to become vegan or vegetarian. Making the transition is probably not as challenging as you may think and could be an opportunity to help keep our planet healthy as well.”

“Sleep is important too because there is some information that women who have PCOS don't sleep as well,” Dr. LaPlante said. “And then we know that sleep—especially if you have sleep apnea that's untreated—will cause some subtle changes in certain hormones and then increase your rate for obesity, heart disease and PCOS.”

“There's data out there that shows that if you have sleep apnea and you treat it with your CPAP and you're wearing your CPAP consistently, it will actually make it easier to control your diabetes, easier to control your sugar, easier to lose weight,” she said. “That also then backs up to good sleep hygiene, regular sleep wake cycles, getting adequate sleep. Those will affect everything in a positive way.”

“Once you're two or three years past your first period, then you should start having a conversation with your physician,” Dr. LaPlante said. “At that point in time, they can look at all your factors—your history, your weight, your activity level—and decide whether or not any testing is needed at that time or whether or not your initial plan's going to be to monitor and whether or not there's other factors.”

“If you decide to not go on birth control, take any medications or other management options at that point in time, make sure it's a yearly ongoing conversation with your physician,” she said.

 “Understanding PCOS is really about understanding why your body works the way it does and allows you to have an honest conversation with your physician or medical provider about how to achieve your personal goals throughout the different phases of your life,” Dr. Callins said.