PCOS Awareness: Countless Different Experiences, One Powerful Message

September is PCOS Awareness Month and the perfect opportunity to shed light on this common but often misunderstood condition that affects 5 to 6 million people in the United States.

Polycystic Ovary Syndrome, commonly known as PCOS, is a hormonal disorder that affects people with ovaries. It is a complex condition with a wide range of symptoms and potential health implications. While the exact cause of PCOS remains unclear, it often involves a combination of genetic and environmental factors.

Symptoms of PCOS can vary from person to person, but they often include irregular periods, excess hair growth, acne, and weight gain. PCOS can also lead to fertility challenges, increased risk of diabetes, heart disease, and other metabolic conditions. However, it’s essential to remember that every individual’s experience with PCOS is unique.

Common symptoms of PCOS

  • Missed periods, irregular periods, or very light periods
  • Ovaries that are large or have many cysts
  • Excess body hair, including the chest, stomach, and back (hirsutism)
  • Weight gain, especially around the belly (abdomen)
  • Acne or oily skin
  • Male-pattern baldness or thinning hair
  • Infertility 
  • Small pieces of excess skin on the neck or armpits (skin tags)
  • Dark or thick skin patches on the back of the neck, in the armpits, and under the breasts

 

My PCOS Story

My journey with PCOS began in my early 20s. After years of taking hormonal birth control, I decided to switch to an intrauterine device (IUD). A few months later I began noticing some unusual symptoms, which I assumed were side effects of the IUD. These symptoms included abnormal hair growth, weight gain, and acne.

At my yearly physical, I informed my primary care provider of the symptoms I was experiencing since switching to an IUD. To my surprise, my provider suggested a blood test and ultrasound to rule out PCOS. My blood test showed abnormally high levels of androgens. Androgens, including testosterone, are reproductive hormones that are produced in both male and female bodies.

The next step was having an ultrasound to ensure my ovaries were functioning properly. I remember sitting in the waiting room for what seemed like hours (you need to have a full bladder for the ultrasound to be the most accurate). As I sat struggling to hold my pee, I thought to myself if I did have PCOS, that this may be the only time I would have an ultrasound in my life. The prevalence of infertility in women with PCOS varies between 70 and 80%.

After my name was called, I was taken down a long hallway. I could see pregnant women excitedly waiting to get a glimpse of their future baby. At this point in my life, I hadn’t decided whether I would want children someday. But the thought of never having the option, was a difficult one for me to process.

Once I got to my room the technician applied gel to my lower abdomen and pressed the ultrasound device to my skin. I really had to pee at this point! After a short time, she pointed to the screen and showed me my left ovary. She indicated what she called a “string of pearls” in my ovary that she said was abnormal and an indicator of polycystic ovarian syndrome.

Polycystic is a term that simply means “many cysts.” The polycystic ovary typically contains many small cysts. Each of these small cysts represents a follicle, which contains a single egg that is attempting to develop to a stage where it will be ready to be released from the ovary (ovulation). However, in people with PCOS, the development of these follicles stops too soon, resulting in a collection of follicles and lack of ovulation.

It was then that I was diagnosed with PCOS, and it felt like a whirlwind of emotions. This feels silly to say out loud now, but at the time, knowing I wasn’t able to ovulate and that I had excess “male hormones”, made me feel “less like a woman”. I read about some of the side effects like thinning hair, stroke, and infertility, and this made me fearful of my future. My primary care provider prescribed birth control pills and said I would likely not be able to have a child without a drug to stimulate ovulation (this is an important part of the story).

A couple years later, my primary care provider retired, and I was abruptly told I would need a new prescription with another provider to refill my birth control. I booked the next available appointment with another provider and went about my life. Since I had PCOS and was told I would have to take ovulation stimulants in order to become pregnant, I didn’t put much thought into the three weeks I would be without birth control pills.

However, PCOS is a complex hormonal disorder that affects everyone differently. Surprise! I got pregnant during those three weeks of not taking birth control pills. For me PCOS, meant struggling with physical symptoms and metabolic challenges, insulin resistance, and mental health issues like anxiety. For others, it can mean issues with fertility. The important thing to remember is that no two PCOS journeys are the same.

PCOS is incredibly prevalent, affecting around 1 in 10 individuals of reproductive age worldwide. The hormonal imbalances associated with PCOS can also have serious long-term health consequences, such as insulin resistance, which may lead to type 2 diabetes if left untreated. Furthermore, the condition can take a toll on one’s self-esteem and quality of life.

Living with PCOS has its challenges, but it’s also given me strength and resilience. By sharing our stories and raising awareness during PCOS Awareness Month, we can help others understand the battles we face. Let’s break the silence surrounding PCOS and work towards a world where those with this condition receive the support, empathy, and understanding they deserve. Together, we can make a real difference in the lives of individuals living with PCOS.

 

Ash and her daughter
Picture of Ash Nadeau

Ash Nadeau

Director of Marketing for Heartland Community Health Center opens up about her personal journey with PCOS.

Getting Involved in PCOS Awareness

As someone living with PCOS, I believe that raising awareness is crucial. Here’s how you can get involved and make a difference:

  1. Share Your Story: Just like I’m doing now, sharing your personal PCOS journey can inspire others and create understanding.
  2. Support Groups: Join local or online PCOS support groups to connect with people who understand what you’re going through.
  3. Advocate for Yourself: Don’t hesitate to seek medical advice and treatment. Early diagnosis and management can make a significant difference.
  4. Educate Others: Share reliable information about PCOS with friends and family. Knowledge is a powerful tool in breaking down misconceptions.
  5. Participate in PCOS Awareness Initiatives: Join PCOS awareness campaigns, attend local events, and use social media to amplify the message during PCOS Awareness Month.