Your body is working against you.
If you have Polycystic Ovary Syndrome (PCOS), you likely feel at battle with your body. You may not experience the life you desire or look the way you want because of persistent symptoms. You may not even definitively know that PCOS is the cause since it is all too commonly underdiagnosed.
Living with symptoms and, perhaps worse–lacking clarity about what’s behind them, is often why PCOS causes feelings of frustration, hopelessness and depression. Getting a diagnosis is the first step in finding relief, but doing so requires both being your own best advocate and finding a provider who will partner with you long-term.
What is PCOS?
PCOS is a chronic hormonal imbalance, causing various symptoms that affect the body in different ways. The formal diagnostic criteria for PCOS include three main characteristics:
- Androgen excess
- Ovulatory dysfunction
- Polycystic-appearing ovarian morphology (PCOM)
With PCOS, the ovaries produce an excess of androgens—male hormones—which interfere with ovulation and cause significant irregularities in the menstrual cycle. This hormone imbalance can also create small, fluid-filled cysts on the ovaries; however, not every person with PCOS will have these cysts (which makes the name somewhat confusing).
But PCOS is far more complicated than the diagnostic criteria might suggest. It is also linked to insulin resistance and excess insulin (the way your body manages blood sugars), which, together with androgen excess, increase the risk of fatty liver disease, obesity, prediabetes, Type 2 diabetes, high cholesterol and high blood pressure, all hallmarks of metabolic syndrome.
According to the World Health Organization, PCOS affects about 8-13% of women who are of reproductive age—higher among certain ethnicities. Up to 70% of those affected are never diagnosed. So it’s no wonder that those who suffer from it feel abandoned by a medical system that doesn’t take the time to understand and address it seriously.
What causes PCOS?
The exact cause of PCOS is unknown, but we know that both genetics and lifestyle can have an effect.
The “front door” to PCOS is a genetic predisposition. Those with a family history of PCOS or Type 2 diabetes are at higher risk.
Research suggests the “back door” to PCOS may be activated by gaining a lot of weight quickly. This produces high estrogen levels, creating a severe hormonal imbalance and a cascade of markers associated with PCOS.
How PCOS is diagnosed
Diagnosing PCOS can be extremely challenging. Too often, patients see various providers who dismiss symptoms as normal, temporary or a result purely of lifestyle choices.
This game of medical hot potato usually happens because PCOS is so complex. It requires a time commitment to understand and link symptoms to their underlying cause and to find a management plan that works. To help with the diagnosis process:
Track your symptoms.
The common symptoms of PCOS include irregular periods, weight gain, appearance changes and infertility. Typically, two of these lead to a diagnosis.
- Irregular periods. These are marked by a menstrual cycle that lasts 40-60 days (instead of 28-32), bleeding randomly, bleeding heavily or having a period very infrequently.
- Weight gain. This includes trouble losing or continually gaining weight, even with regular exercise and proper nutrition for your lifestyle.
- Appearance changes. These may manifest as acne, facial hair, hair loss or thinning and other symptoms of adolescence and/or male hormones.
- Infertility. Defined as the inability to conceive after trying for one year (under 35 years of age) or six months (over 35).
Work closely with a provider who specializes in PCOS.
While unacceptable, it’s understandable that PCOS often goes undiagnosed because symptoms may point to a variety of causes. So finding a provider who will invest time with you in connecting the dots is important in reaching a diagnosis and management plan.
The diagnostic process typically involves a conversation about your medical history, a physical exam, blood tests (to check hormone levels) and an ultrasound (to check for ovarian cysts). My personal testing for PCOS is the most comprehensive assessment I’ve created, mimicking the symptoms of PCOS and testing how the body reacts.
Why early detection of PCOS is important
Early detection of PCOS is important to help manage symptoms, which can mitigate long-term health impacts, improve your quality of life and reduce the likelihood of depression and anxiety.
Specifically, early treatment can help prevent:
- Infertility. Irregular ovulation or anovulation from PCOS makes it difficult to conceive. Knowing and treating the cause earlier saves precious time.
- Metabolic disorders. Untreated PCOS can lead to further metabolic complications, such as:
- Type 2 diabetes and insulin resistance
- Lipid disorder, hypertension (high blood pressure), high cholesterol and heart disease
- Nonalcoholic steatohepatitis (NASH), a condition that forces glucose into the liver and causes fatty liver disease
- Endometrial cancer. Excess estrogen can cause the endometrium (the inner lining of the uterus) to thicken excessively and increase the risk of abnormal cell growth in younger ages, especially. This is why getting help fine-tuning your cycles early on is essential.
- Mental health struggles. PCOS is directly linked to anxiety and depression, as well as negative body image, which can affect all aspects of your life.
How PCOS is treated
Regardless of when PCOS symptoms first appear, the core treatment strategy remains the same throughout a person’s reproductive life.
One of the most effective ways to treat PCOS is through the use of hormonal contraception that contains both estrogen and progesterone. Together, these hormones help regulate ovulation (thus menstrual cycles), control symptoms like acne and hair growth, and lower the risk of endometrial cancer.
Beyond this, it’s ideal to treat PCOS holistically because it has such a varied impact on the body and mind. The “dream team” of medical providers would include gynecology, endocrinology (hormones), behavioral health, dermatology and nutrition. But the key is finding one person initially with the patience and expertise to help you find a diagnosis who can refer you to other specialists depending on your unique situation.
When someone with PCOS wants to conceive, the care approach will change. It likely means fertility treatments to help induce ovulation or other assisted reproductive technologies, such as in vitro fertilization (IVF). It may also mean a more concerted effort to achieve and maintain a healthy weight in order to carry a pregnancy to full term.
PCOS and weight loss
Because of society’s pressure on those who identify as women to look a certain way, it’s no wonder that weight loss and management is such a major concern to many who have PCOS. Everyone deserves to feel at home in their body, and for some that means having it to look or perform a certain way.
Know that PCOS is bigger than the choices you’re making. It is completely understandable to feel frustrated and demoralized not seeing changes even when eating nutritious foods and participating in a consistent movement practice. Those feelings are valid.
If you are struggling with weight gain or the inability to lose weight with PCOS, a competent and compassionate provider should help you find a solution that’s right for you, whether that’s stabilizing your hormones or offering a referral to a nutritionist.
Is there a cure for PCOS?
While there is no cure for PCOS, treating symptoms can absolutely make improvements and help you reach your goals.
Perhaps most simply and importantly, knowing you have PCOS can offer validation of your experience. You may be working uphill, but the right provider and treatment plan can help you build the steps you need to climb it.
