Between 4 and 12 percent of women of reproductive age are affected by polycystic ovary syndrome, or PCOS, and less than 50 percent of them are diagnosed. Staggering, right?
Though it’s tempting to be shocked at how few women receive a correct and prompt diagnosis of PCOS—an imbalance of reproductive hormones—the lack of information available clues us into a much larger problem: That this common and serious condition isn’t being taken as seriously as it should be by the medical community.
When women seek their doctor’s advice because they think they have PCOS, they are met with resistance and often told that it’s just their hormones’ natural fluctuations or that they “just need to exercise and eat better.” Facepalm.
Does this not highlight the need for women to be even more proactive about their own reproductive health? That means not taking “nothing is wrong” for an answer. In an effort to empower you to insist on a complete and correct answer from your doctor, we’ve compiled everything that you (or a friend—sharing is caring!) need to know about PCOS, so that if you think you have it, you’ll be in a position to advocate for better care.
What Is PCOS?
PCOS—polycystic ovary syndrome or polycystic ovarian syndrome—is a health problem caused by an imbalance of reproductive hormones that wreak havoc on your reproductive system and the rest of your body. Much like every process your body goes through, PCOS is deeply affected by the way your hormones interact with each other. When one reproductive hormone is thrown off balance, it affects the way that all of the others work in your body.
If you have balanced hormones, your ovaries make an egg, which is released into your fallopian tubes every month to await fertilization. If you have PCOS, your ovaries may not develop the egg to maturity or they may not release the developed egg during ovulation.
Because the hormones that affect your menstrual cycle are imbalanced, PCOS can cause you to have irregular or missed periods which can lead to infertility and the growth of small cysts on your ovaries. The cysts aren’t harmful on their own, but they can lead to further hormonal imbalance, which we’ll go into in more detail.
Causes of Polycystic Ovary Syndrome
We know that toxic shock syndrome is caused by bacteria and that period cramps are caused by prostaglandin telling your uterus to contract. When we know the cause of something, it helps us wrap our heads around why we’re dealing with it and can make finding a treatment much easier. When it comes to PCOS, researchers are unsure of the direct cause but believe there to be three contributing factors:
- Genetics. Your chance of having PCOS is higher if your mother or sister have it or have irregular periods or diabetes. It’s not just the maternal side of your family that can make you predisposed to the condition, though; it can be passed down from your father’s side, as well. In addition, African-American (8 percent) and Latina women (13 percent) are more likely to have PCOS than Caucasian women (4.8 percent).
- High levels of androgens. Androgens are known as “male hormones,” though all women make small amounts of it. If you have PCOS, you probably have more androgens than estrogen. These hormones are what prevent your ovaries from releasing an egg during your menstrual cycle and can cause PCOS symptoms like male pattern baldness, extra hair growth (hirsutism), and acne.
- Insulin resistance. When you eat, your food is converted into energy. The hormone that controls this process is called insulin. Insulin resistance happens when your body’s cells don’t respond normally to it, causing your insulin levels to be high. If you’re overweight, don’t eat a healthy diet, or don’t get enough exercise, it’s far more likely that this is a part of your PCOS condition.
How Do I Know If I Have PCOS?
Many women start noticing signs of PCOS in their teenage years—when their body is naturally going through hormonal changes. This makes doctors more likely to attribute symptoms of PCOS to natural changes in the body, instead of this potentially serious condition. That being said, women can develop symptoms later in their reproductive years. It’s important to know what the symptoms are so that you know when it’s time to see your doctor or reproductive specialist.
Ideally, women with PCOS would have clear symptoms that would give them and their doctors the ability to diagnose and treat with ease. Sadly, this is not the case. It might not be obvious to you that you have PCOS because you could have a varying range of vague symptoms. These might include:
- An irregular or absent menstrual cycle
- Excessive hair growth on the face, chin, or body, called Hirsutism (this is a telltale sign, as it affects up to 70 percent of women with PCOS)
- Ovarian cysts
- Difficulty managing your weight (not all women who have PCOS will be overweight, but for those that do, losing weight is usually difficult due to insulin resistance)
- Skin tags
- Acne on the face, chest, and back
- Darkening of the skin
- Male-pattern baldness or thinning head hair
- Multiple miscarriages
- Difficulty breathing while asleep (obstructive sleep apnea)
- Depression or mood swings (which can also be attributed to PMS)
- Deeper voice
- Decrease in breast size (thanks to the low levels of estrogen)
- Pelvic pain
- Enlarged clitoris (this is a very rare symptom)
It’s reading a list like this that makes those of us who are lucky enough to not have PCOS feel a little guilty for wishing away our periods. We’ll welcome it with open arms next month!
With the changes to your body, your emotional well-being (which is often linked to both the hormonal changes and hair growth and weight gain that can affect your confidence), and trouble with your period and infertility, PCOS is a condition that desperately needs more research. Left without treatment, PCOS can become even more serious and turn into other health problems like:
- High blood pressure
- Unhealthy cholesterol
- Sleep apnea
- Depression and anxiety
- Endometrial cancer
How Is PCOS Diagnosed?
Even with all of the known symptoms of PCOS, the average woman with the condition goes seven years without getting a proper diagnosis. This is likely due to the fact that there are no definitive tests to diagnose PCOS and the decision is left to the discretion of your doctor to review your symptoms, family history, and perform multiple tests that could identify your condition.
Some of the tests that your doctor can do to help with your diagnosis are:
- Physical exam. Your doctor will measure your BMI (body mass index), your waist size, and your blood pressure, as well as check for skin discoloration, skin tags, extra hair, and an enlarged thyroid.
- Pelvic exam. This exam can be done to see if you display signs of excessive male hormones (androgens) like an enlarged clitoris and to see if your ovaries are swollen or enlarged.
- Pelvic ultrasound. Using an ultrasound machine, your doctor can check for cysts on your ovaries, one of the key signs of PCOS.
- Blood tests. A variety of blood tests can be performed to check for high levels of testosterone (an androgen), prolactin (which plays a large role in your lack of menstruation or infertility), too high levels of cholesterol or triglycerides, Thyroid-stimulating hormone (TSH), adrenal gland hormones, and glucose tolerance and insulin levels.
In addition to these tests, be sure to share any and all symptoms you have with your doctor (even if you’re not sure they are related to PCOS and even if they are hard to talk about). The more information your doctor has, the better your chance of getting a correct PCOS diagnosis.
Between the massive list of possible PCOS symptoms and the subpar success of diagnosis, if you have (or think you might have) PCOS, it’s understandable that you might be feeling stressed right about now. Take a deep breath, girl. Though PCOS is a serious condition that can’t be prevented or cured, there are plenty of treatment options that can alleviate symptoms and prevent long-term complications.
PCOS and Weight Loss
PCOS-related weight gain is a struggle that many women—with or without an official diagnosis—deal with. But even a small amount of weight loss goes a long way when you have PCOS - as little as a 10 percent decrease (that’s 20 pounds for a 200 lb woman) in your weight can help kickstart ovulation, increase your chances of getting pregnant (if that’s one of your goals), help your hormones reach normal levels, lower your glucose levels, and help your body use insulin better. Talk about motivation!
When it comes to losing weight when you have PCOS, not all diets are created equal. Eating a balanced diet full of fiber-rich vegetables like broccoli, lean proteins, and anti-inflammatory foods (such as tomatoes, olive oil, and nuts) will help you manage your weight. Due to the insulin resistance that is common in women with PCOS, it’s best to avoid foods that are high in refined carbs, have a lot of sugar, or are processed. If you stick to a clean, whole foods diet you’re likely to see results.
On top of sticking to a PCOS diet, incorporating exercise into your daily routine (hello, ClassPass!) can make a big difference in how you feel—and look.
At-Home Excessive Hair Treatments
Getting your sweat on and eating a PCOS-friendly diet can help you cut down on unwanted hair growth because it helps to balance out your hormones. Since excessive hair might not go away with lifestyle changes alone, you can try laser hair removal, electrolysis, depilatory creams, or waxing. It’s best not to shave, though. This can make unwanted hair grow back thicker and faster. Another option is to ask your doctor to prescribe you eflornithine HCl cream, a prescription skin treatment that can help slow down unwanted hair growth.
Medical PCOS Treatments
DIY lifestyle changes are a key part of managing your PCOS, but we’d be foolish to believe that a condition like this could be healed through diet and exercise alone. Otherwise, wouldn’t everyone who has PCOS just head to the gym and eat a salad for lunch? So, in addition to making sure you eat well and exercise often, some medical treatment options for PCOS include:
- Metformin. Though not FDA approved (yet), Metformin is commonly given to women with PCOS because it can help treat type 2 diabetes and help with some symptoms, like restarting ovulation. Weight loss is a major side effect of this medication but it hasn’t been shown to decrease acne or excessive body hair.
- Anti-androgen medication. Because these medicines block the effect of androgens, which are largely to blame for hair loss, excessive hair growth, and acne they are very popular in treating PCOS. A word of warning: anti-androgens can cause complications with pregnancy, so are best avoided if you’re trying to conceive.
- Hormonal birth control. If you aren’t trying to get pregnant, hormonal birth control that contains both estrogen and progesterone can be beneficial in treating PCOS symptoms. It can make your menstrual cycle more regular, lower your risk of endometrial cancer, and help improve acne and excess hair growth.
PCOS and Pregnancy
If you don’t see children in your future, the above options for treating PCOS make work well for you. If you’re dreaming of babies cooing at you, you’ll likely need to take a different path. Some options for managing PCOS and becoming pregnant, in addition to losing weight, are:
- Fertility medication. A prescription like Clomid can increase your chances of pregnancy by helping you ovulate.
- In vitro fertilization (IVF). If medicine doesn’t work, you have the option of having your egg and your partner’s sperm implanted into your uterus.
- Ovarian drilling is another option for women experiencing PCOS-related infertility. Your doctor can drill a few holes into the surface of your ovary (using a laser)—this can help restore ovulation for six to eight months, making it a temporary solution.
Having PCOS is something that we wish no woman had to deal with. Your time would be much better spent waging war on the tampon tax and pursuing our dream careers, not trying to figure out how to manage your hormones. Still, knowing how to take charge of your reproductive health is an essential part of being a woman in the 21st century—it’s both our right and responsibility to advocate for ourselves and each other. If you have or think you have PCOS, don’t stop until you get answers, an accurate diagnosis, and a treatment plan that you can get behind. Your health can and does shape your life. Make it a good one!
Photo: Mitya Ku