How to Talk About: PCOS (Part I)
TL;DR
Polycystic Ovary Syndrome - or PCOS - is a genetic, hormonal, metabolic, and reproductive condition that affects up to 15% of women in the United States (1). While it is a common disorder, it is largely under-recognized, leaving women diagnosed with it to feel left in the dark. The reasons for the lack of standardized education around PCOS aren't necessarily nefarious: traditionally, diagnosis and treatment have fallen into the hands of gynecologists, but in reality, they should involve several different types of healthcare practitioners. Unfortunately, the lack of collaborative care parallels that for many doctors, standard PCOS training in medical school is minimal - if they even get any.
What’s more, significant medical gender bias against women is relatively common. Even when female patients are equipped with facts and feel ready to make their own health choices, concerns are sometimes met with passivity and dismissal. Overall, it takes longer for women to receive a diagnosis. One recent study that interviewed women with PCOS showed that many of them saw three or more doctors before attaining a diagnosis (2). Many of these doctors lacked sufficient knowledge of PCOS and couldn’t confidently diagnose it. Others chronically dismissed concerns. Some forwent providing any necessary medical information about the condition to their concerned patients.
Why it matters
PCOS is the most common endocrine disorder in women of reproductive age. It’s simply too common to be as overlooked as it often is. The condition affects more than 5 million women in the US alone and is the leading cause of infertility in women. It can lead to lifelong complications and potentially life-threatening conditions such as:
- Psychosocial disorders
- Type 2 diabetes
- Cardiovascular disease
- Endometrial cancer
The medical community previously considered PCOS to be a purely gynecologic problem, centering diagnoses around the presence of a polycystic ovarian state. Doctors discover these cysts with a transvaginal ultrasound, which is costly. Diagnosis is even more elusive because not all women with PCOS will even show discernable polycystic ovaries in an ultrasound.
However, PCOS is now recognized as a highly complex endocrine disorder with many possible causes. What's more, we now know that there are myriad clinical manifestations and additional symptoms, only one of which may be the presence of polycystic ovaries. The condition presents each individual with different symptoms and biochemical imbalances. Even if you don't show typical symptoms, staying in tune with your body and staying on top of any changes or physical signs is vital.
While many of our "How to Talk About" articles cover ways to tackle culturally challenging, emotional issues, this one has a different goal. When you finish reading, we want you to feel educated and empowered to advocate for yourself with your providers.
The good news is that many women describe benefitting from self-educating about PCOS using materials they could find online. Self-advocation also helped them get the care they needed (2). PCOS is a condition that is manageable with a strategic, holistically functional approach. You and your healthcare providers might have to do a little work to determine the root cause.
Here’s where you can start.
Find reputable sources you trust as you gather information (glad you're already here!). Remember: You’re researching, not diagnosing.
Your healthcare provider's job is to listen to you. There is no need to tiptoe around concerns. It is okay to get another opinion if you feel you’re not being heard. Ask for referrals to other great providers from friends and loved ones.
While you know your body better than anyone else, trust your provider to work with you to make the right call. Be open to possible diagnoses and treatments you haven't considered. In other words, don't decide you have PCOS before you walk into your doctor's office!
EDUCATE
From a fertility standpoint, the most common reason women make that gynecologic evaluation appointment is due to menstrual irregularity. Oligomenorrhea (infrequent periods) or amenorrhea (absent periods) are some of the most apparent symptoms. At the same time, women are also commonly pushed to seek care for infertility and signs of high androgens (3, 4, 5), like excessive hair growth or acne.
Proper diagnosis is essential, so it's important to keep an open mind and maintain some optimism throughout your research. Unfortunately, many women who experience the above conditions get funneled straight into standard treatments for PCOS, which can potentially do more harm than good. For example, prescription drugs like metformin and Clomid are sometimes doled out to stimulate ovulation in women who are already ovulating - albeit irregularly - and don't necessarily need them (6, 7). These interventions have their place in treatment protocols but may also be band-aid solutions that don't get at the root cause(s).
Additionally, many doctors and patients jump straight to fertility treatments rather than assessing for signs of PCOS or other fertility issues. So many variations in metabolic dysfunction are similar to each other. Unfortunately, PCOS falls into this category in that it casts a wide array of symptoms that make painting the complete picture a sometimes blurry endeavor.
Moreover, not all doctors follow the same criteria to diagnose PCOS. While there are guidelines, not everyone follows them, resulting in missed diagnoses and incorrectly diagnosed patients. The most up-to-date and widely used and accepted method is known as the Rotterdam criteria. When used, the Rotterdam criteria can help accurately identify PCOS with its 3-part approach (8).
According to the Rotterdam criteria, if a patient exhibits at least 2 of the following three symptoms, they could have PCOS.
- Higher-than-normal levels of androgens cause high testosterone and, in turn, may spark physical symptoms like facial hair or hair loss, elevated acne, and hair in culturally unwanted places (e.g., on the upper lip, chin, chest, belly, nipples, etc.). Simple labwork can confirm if high testosterone levels are present in your blood.
- Irregular, heavy, or missed periods due to missed ovulation that fluctuate between short cycles (less than 22 days apart) and long cycles (more than 42 days apart) or no period at all. Patient history comes into play here, so if you don't already track your periods, do your best to chart out your previous cycles before speaking to your doctor.
- Collections of 12 or more egg follicles or "cysts" on your ovaries that may be larger than usual. This can be discovered only via ultrasound of the ovaries. That ultrasound might reveal multiple follicles in various stages of development on one or both ovaries. Typically, ovarian follicles contain egg cells, released during ovulation after a balance of hormones determines which eggs mature and ovulate each month. Abnormal hormone levels prevent follicles from growing and maturing to release egg cells, which can cause immature follicles to accumulate in the ovaries. In women with PCOS, this can cause multiple eggs to mature simultaneously, creating a polycystic ovary. The problem is that small, immature ovarian follicles can appear as cysts (remember, some women with PCOS might have what look like normal ovaries), so an ultrasound alone can't fully confirm that you have PCOS.
The thing is, even the Rotterdam criteria aren't foolproof. Other conditions that can look like PCOS must also be ruled out. For example, severe issues like androgen-secreting tumors, Cushing's syndrome, hypothyroidism, high prolactin caused by a pituitary tumor, or congenital adrenal hyperplasia can present similar symptoms.
A note on body image and PCOS diagnoses
Although women with PCOS are more likely to be overweight than women without the condition, the relationship between PCOS and weight remains unclear. BMI is not an essential diagnostic criterion for PCOS diagnosis. 10-15% of women diagnosed with PCOS have BMIs of 25 or less, falling into the "normal" to "underweight" categories (9).
Our take? Take BMI out of the equation.
Hypothalamic amenorrhea could be causing irregular cycles and should be considered based on patient history (10). PCOS can often be misdiagnosed as HA, and what’s more, someone with HA can fall anywhere on the BMI spectrum. HA is usually a result of stress, disordered eating, and overtraining. Women in this category are prone to doubling down on these behaviors due to cultural weight stigma. As a result, they might look to restrict further, overexercise, and continue to build upon already high-stress levels.
With so many symptoms that mirror other conditions, thorough lab work must be the first step in solving the situation and determining if you have PCOS.
COMMUNICATE
Think of PCOS as a spectrum of dysfunction instead of a concrete diagnosis. The disorder involves a wide array of symptoms that range in severity from woman to woman, and many do not seem to fit the typical PCOS diagnosis criteria.
TRUST
Keep in mind that you are not necessarily infertile if diagnosed with PCOS. It may make becoming pregnant more difficult, but not impossible. Once you feel informed, schedule an appointment with your healthcare team and work with your team to figure out how to support healthy cycles and ovulation.
GOOD NEWS. PCOS DOES NOT AUTOMATICALLY EQUAL INFERTILITY.
Not great at speaking up in the doctor's office?
Don't worry. You're not the only one.
Consider bringing an advocate. A friend or loved one who can help take notes, be there for moral support if needed, and help you remember your questions and concerns can significantly help you and your provider! But if this isn’t an option, think about writing a list or even a script of what you would like to discuss. Here are a few questions and requests that can help you feel more confident voicing your concerns:
"I have been experiencing [insert symptoms]. Help me explore possible causes."
"I am worried about PCOS. Please order blood work we can interpret together to gain more insight."
"I have been trying to get pregnant for [length of time]. Let's consider PCOS a possibility."
There is a human element to balancing your trust in your healthcare provider with your concerns, but ultimately, know that your doctor's sole mission is to care for you and your potential family.
We’ll be diving deeper into nutritional concerns for PCOS in Part II, sharing specific tools, resources, and education on managing PCOS in a holistic, functional way. In the meantime, cover your prenatal vitamin and mineral needs by building up your stores throughout your preconception phase with our Registered Dietitian-formulated, OBGYN-approved supplements. Our women's prenatal and fish oil supplements are the only supplements you need in your cabinet. Our men's prenatal vitamin and mineral supplement was formulated specifically for your partner to promote healthy, motile sperm. When you both invest in your reproductive health, you invest in your family's long-term health.
