PCOS — polycystic ovarian (or ovary) syndrome — is a chronic condition that affects the lives and health of millions of people globally. At least six to 12 percent of people (as many as five million) with female sex organs of childbearing age suffer from PCOS, according to the CDC. As Stephanie Long, MD, told us, if you have PCOS, your ovaries and uterus "don't get the signals in the right way" from your brain, leading to a slew of damaging health effects that impact a patient's everyday life.
We spoke with Alyssa Dweck, MD, a New York gynecologist, about the rise in diagnosis of PCOS. She told POPSUGAR, "I am seeing so many patients with PCOS now," and confirmed that it's on the rise. "I'm not sure whether there's more of it, or if we're realizing we need to recognize it, or if people are more aware of their [symptoms] and bringing that to their doctors."
Either way, it's important to get the information out there so more women get in touch with their bodies, spot symptoms, and treat the issue as soon as possible, as untreated PCOS can lead to deadly disease and infertility.
What Is It?
PCOS is a hormonal disorder that affects six to 12 percent of people with female sex organs. People with PCOS produce more androgen (male hormones) than others who are assigned female at birth, which causes enlarged ovaries with multiple small cysts due to the follicles not maturing into eggs. This creates a lack of ovulation.
What Are the Signs of PCOS?
There is a spectrum of symptoms, and each person is impacted differently. However, a handful are "telltale signs," as Dr. Dweck said, and they are extremely typical of PCOS. Here's what doctors are looking for and what you should look for if you think you might be at risk.
- Hair growth. "On the face, specifically," said Dr. Dweck, and "in male places like sideburns, chin, mustache . . . more than 'you have to pluck a couple.'" If you notice dark, thick hairs growing in those areas, it's an indicator of a hormonal imbalance that may be related to PCOS.
- Acne. More than your typical breakout? This is "Not just your typical teenage acne — it's persistent, significant." Acne plus hair growth are "signs of excess male hormone or androgen levels, which is typical of PCOS," Dr. Dweck said.
- Weight gain. Whether it's difficulty losing or maintaining weight, Dr. Dweck said many people with PCOS are at a higher weight. She did, however, mention that there are atypical cases referred to as "atypical PCOS." Margaret Nachtigall, MD, clinical associate professor in the Department of Obstetrics and Gynecology at NYU's Grossman School of Medicine, explained that about 25 percent of people with PCOS are "actually extremely thin."
- Menstrual irregularity. This is one of the hallmarks of PCOS. "Your menstrual cycle is going havoc." You either have no period, many missed periods, or skip several months at a time. This is due to a lack of or infrequent ovulation, according to Dr. Dweck. Dr. Nachtigall defined an irregular period as one that is more frequent than every 21 days or less frequent than every 42 days.
- Difficulty getting pregnant. If you've been struggling with fertility and have any of these other symptoms, it may indicate that you have PCOS. This is definitely a time to check with your healthcare provider.
- Male pattern baldness. In addition to that oh-so-pleasant facial and body hair growth, you may also lose the hair you actually want on your scalp, like at your temples.
- Intolerance to sugar. PCOS is often linked with insulin resistance and "borderline diabetes," according to Dr. Dweck.
Unfortunately, no two cases of PCOS are the same, although irregular periods are usually the biggest indicator. "One of the things about making the diagnosis of PCOS, because the diagnosis is varied, is that some people will have irregular periods and acne," Dr. Nachtigall explained. "Other people will have irregular periods and hair growth. Other people will have irregular periods and hair loss."
Add to the fact that not everyone with PCOS is at a higher weight, and it may be tough to pinpoint. Dr. Dweck pointed out that there are people who have atypical symptoms, so it's imperative you see a healthcare provider for a proper diagnosis.
How Is PCOS Diagnosed?
Dr. Dweck told us that "there's no foolproof way," but the most accurate way of diagnosis is the most invasive. "A true diagnosis is done by ovarian biopsy," she said, but it's highly aggressive and not the preferred method of diagnosis.
In most cases, your doctor will do a pelvic ultrasound, looking for a typical sign known as "a string of pearls." These are "teeny cysts around the periphery of the ovary that look like a string of pearls," she explained. Additionally, your doctor may run hormone blood tests to see if you have elevated testosterone or DHEAS, as well as low estrogen. These can all be indicators of PCOS as well.
How Do You Treat PCOS?
The priority in treatment focuses on "regulating the menstrual cycle and preventing pregnancy to regulate ovulation," she said. Here's the main plan of attack you'll encounter.
- Combination birth control pills. The most common treatment for PCOS is a combination birth control pill with both estrogen and progesterone, which "increases a particular protein made by the liver called sex hormone binding globulin." Why is this important? "It binds free testosterone in the bloodstream," meaning all that extra testosterone that's unchecked will be regulated once again. "The testosterone level is lowered, so those signs of high testosterone like hair growth or hair loss on the top of the head or acne will diminish quickly."
- Diet and exercise. When dealing with PCOS patients who are at a higher weight, Dr. Dweck told us that regulating diet is imperative. Since many people with PCOS are also insulin resistant, maintaining a low-sugar and low-carb diet is key. Exercise is also important, not only to lose weight, but also to regulate insulin levels. "Exercise, independent of weight loss, just regular exercise will improve insulin sensitivity," explained Eduardo Grunvald, MD, program director at UC San Diego's Weight Management Program, in a previous article.
- Hormonal IUD. This form of treatment has "no impact on the testosterone levels at all" (and she noted that a rare group of women get acne from the hormonal IUD), but "it keeps the uterine lining very thin — that's protective against uterine cancer," and it's "excellent for birth control." This is important for someone who doesn't know when they're ovulating, so they would have no idea if they were or weren't pregnant. It also "lightens the period or eliminates it," without creating uterine buildup by "chemically cleansing." Keep in mind that the hormonal IUD only contains progesterone, no estrogen.
It's important to note that your doctor will create a treatment plan that is specific to your body, your symptoms, and your needs.
What Happens If You Don't Treat PCOS?
If left untreated, PCOS has a serious impact, and can lead to:
- Implications of being at a higher weight (and all the health problems that come with it, including heart disease and mortality).
- Uterine cancer (thanks to "unopposed estrogen and build-up of the uterine lining").
Is It Curable?
Short answer: no. Dr. Dweck referred to PCOS as like "a chronic disease," but the glimmer of hope is that "it's very treatable." And it's true — we've heard from multiple doctors that it's one of the most correctable forms of infertility and that there are several avenues and combinations for treatment. Arm yourself with knowledge and pick your all-star healthcare team to set yourself up for success. You can learn more from Dr. Dweck in her book, The Complete A to Z For Your V, (which outlines PCOS) on Amazon.
— Additional reporting by Christina Stiehl