Polycystic Ovarian Syndrome (PCOS) is a common syndrome that affects one in ten women aged 15 to 44. It’s a hormonal imbalance that affects the body’s metabolism, overall health, and physical appearance. It is often overlooked despite having a myriad of physical symptoms, all of which are uncomfortable and some of which are devastating.
Women with PCOS have higher than usual levels of androgens and male hormones such as testosterone, as well as high levels of insulin or insulin resistance. This difference in insulin causes the body to not change food into energy in a typical way.
The most common symptoms are irregular menstrual cycles, including missed periods and lack of ovulation. Women also experience excess hair on the face and chin, acne and male-pattern baldness. Weight gain around the waist, especially belly fat, is another common symptom of PCOS. Besides the physical symptoms, women can also experience emotional symptoms such as anxiety and depression, thought to be triggered by the hormonal imbalance.
To find out what it’s really like living with PCOS, I talked to a colleague I knew struggled with the syndrome. Full disclosure, I work at Progyny, a fertility benefits management company. Because of where I work and what I do, it’s not unusual for us to talk about menstruation, fertility, and all things gynecology in the office.
Many women keep their struggle with PCOS silent. Luckily, my colleague Julie doesn't have to.
Julie came to me a while ago about her period. She was experiencing breakthrough bleeding while on the birth control pill, which meant she was bleeding while taking active pills as opposed to bleeding on the placebo pills. Can you imagine? She was going nuts with the irregularity.
To help make sense of it all, she did what most millennials do: she started using an app to track her flow. She confided in me about her symptoms and it sounded a lot like PCOS. But here’s the thing: she’s thin, she doesn’t have excess hair or male-pattern baldness, or even regular acne. Even though she didn’t have all of the hallmark symptoms, I recommended she see a doctor.
When Julie saw the doctor, he used a transvaginal ultrasound to look at her ovaries and confirmed her diagnosis: PCOS. Her ovaries had a polycystic appearance, meaning a lot of small cysts on the ovaries. Her blood work showed high levels of anti-Müllerian hormone, which is correlated to a high number of follicles in the ovaries. Her blood work also showed high levels of androgens and insulin. All of this explained her irregular menstruation.
Julie spent years helping Progyny's members through their fertility health journeys. But when it came to her own health, she was understandably confused, scared, frustrated, and hesitant to go to a doctor. After she saw the doctor, she thanked me for convicing her to go. The relief of the diagnosis was immense.
Like most people with PCOS, the symptoms and treatment affected Julie's personal and professional life. Luckily, she works in a friendly environment where these types of diagnoses are understood, and disclosure is safe. To help ameliorate the symptoms, Julie first changed her diet. She’s focusing on a plant-based diet in hopes that it will help with her overall health. To relieve anxiety and stress, Julie started meditating to help her take it one day at a time. To address breakthrough bleeding, she is working with her physician to find the right birth control pill. She also plans to freeze her eggs since PCOS can impact fertility.
PCOS is a syndrome which currently has no cure. It can be managed with diet, healthy lifestyle choices, and medication. Physicians may put patients on medications to help with insulin resistance, to regulate hormones and menstrual cycles, and for acne.
If you think you may have PCOS, the first step is to talk to your OBGYN. They may recommend you see a reproductive endocrinologist who can do additional testing and make treatment recommendations. If you feel safe disclosing your health information at work, it could help to let your supervisor or benefits team know that you may need accommodations for appointments.
Like Julie did, seeking help is the first step. Advocating for yourself can be difficult, so getting help from a trusted friend or family member may be the best option as you navigate your physicians and treatment options. Her diagnosis also meant that she needed to have some frank conversations with her partner to discuss family planning. Those can be difficult conversations, especially given that she is unsure of her own family building goals.
While she’s still finding the right balance, she has found that PCOS has helped her make healthy lifestyle choices. These choices affect her overall health, physically, mentally and emotionally, in a positive way. While Julie's PCOS is still a daily struggle, she has faith in her care team, a supportive work environment, and friends she can lean on for advice and support.
PCOS isn’t fun. It can be disruptive, confusing, and frustrating. But getting to a diagnosis can bring relief and answers, and in Julie’s case, an overall benefit of life changes, acceptance, and support.
Lissa Kline, LCSW is currently the Director of Member Services at Progyny, overseeing the Patient Care Advocates. She worked at Columbia University Medical Center for several years in the division of Reproductive Endocrinology and Infertility. Involved in Patient Services and the Donor Egg Program, she loved working with patients while they underwent fertility treatment. Lissa graduated with a Master of Science in Social Work from Columbia University.