A personal PCOS journey: Michigan State University junior Terriana Gregory knew she had it, but didn't know why

Polycystic ovary syndrome (PCOS) affects millions of women worldwide, yet remains widely misunderstood and underdiagnosed. As someone who has struggled with the condition firsthand, I understand the physical and mental toll it takes. By sharing my journey with PCOS, I hope to shed light on the reality of living with this often-overlooked syndrome and offer support and encouragement to others facing similar challenges.

PCOS is a hormonal disorder characterized by irregular menstrual cycles, excess androgen levels, and ovarian cysts. It is a leading cause of infertility. Apart from its reproductive effects, PCOS can lead to a range of health problems, including insulin resistance, weight gain, and increased risk of type 2 diabetes and cardiovascular disease.

My journey with PCOS began at age 20, when I was navigating the complexities of adulthood and pursuing my career dreams. Like many others, my symptoms appeared subtly at first: pelvic pain, unexplained weight gain. It wasn't until I experienced ovulation bleeding in early March 2022 that I saw a doctor. I went to the emergency room. Typically, I would make an appointment with my primary care physician in Detroit, but they were booked full and I didn't have time to drive 90 minutes.

I wanted to know immediately what the problem was.

I remember being scared because I had never been to an emergency room until that day. The waiting room was crowded and noisy, there were babies crying, people sleeping in their chairs, and the phone was constantly ringing. I had to wait about two hours before my name was called, but it felt like an eternity. When I was finally called, a nurse took my measurements and the doctor introduced himself. However, the doctor didn't look at me and kept looking down at his clipboard. The doctor asked me why I was here, so I explained that I was bleeding a little but that it was normal after my period. The doctor then suggested that it might be an STI and asked me to submit a urine sample, even though I told him I hadn't been sexually active. We discussed this multiple times, but I eventually submitted the sample to avoid further arguments.

I took my sample and went back to my room. But the doctor never came back and didn’t tell me what to do next or where to see the results. The nurse told me to go home and download the app to see the results in a few days. I knew I hadn’t had sex so there was no way I could have contracted an STI or STD. I was distraught because I felt like the doctor didn’t listen to me or take into account how scared I was. The doctor didn’t tell me anything about what was going on other than hinting that I might have an STI or STD.

As the day went by, I couldn't shake the feeling of frustration and a little disbelief. How could I get help or answers? Why were doctors so dismissive? Am I overreacting? I realized how little I truly understood about my body. That night, I decided to dig deeper into the subject, reading articles and forums to learn more about ovulation and the signs and symptoms that come with it.

Later that night, I had a conversation with some friends and told them some of what I was going through. I had never confided in anyone about it before because I was still confused and didn't really want to talk about it. I told them I thought it was weird because I was bleeding and I'd already missed my period. They just laughed and said it was normal. And while I understood that for some it might be expected, for me it was abnormal. I'd never experienced anything like it. That alone wasn't much comfort.

The next day, I had an appointment with my OB-GYN in Lansing. The appointment was scheduled for three months from now, which coincided with a study abroad trip I was planning to take in June. During the trip, I experienced increased ovulation bleeding and a little more pelvic pain. I tried to ignore it so I could enjoy my time in Europe.

Returning from my trip, I was ready to find out what was going on with my body – I knew what I was experiencing wasn't something that happens every day for me and I had a gut feeling that there was something more.

The day I found out I had PCOS is etched in my memory like a dark cloud on a sunny day. It started out like any other doctor's appointment, with the usual blood tests and a few questions about my symptoms. But as the appointment progressed, I felt the atmosphere change.

The doctor's voice became more serious as she explained the results. She gently informed me that I had Polycystic Ovary Syndrome, a condition that affects countless women around the world. At first, I was surprised. PCOS? I had heard of it, but I never imagined it would be a condition that I would have to personally deal with.

A storm of emotions hit me as the reality sunk in. Fear, confusion, anger, and sadness mixed together and created anxiety in my heart. What does this mean for my future? How will it affect my health, my relationships, and my dreams?

But there was a ray of hope amid the chaos. My doctor listened to my story and told me that the ovulation bleeding I had previously experienced could have been due to a hormonal imbalance in my body. He then reassured me that PCOS is manageable and there are steps I can take to improve my symptoms and minimize its impact on my life. He recommended lifestyle changes, medications and regular check-ups to monitor my condition.

I left the doctor's office feeling like I had stepped into a new chapter in my life. It wasn't the diagnosis I wanted, but it was a reality I had to face, and I knew that with time and renewed determination, I could overcome the challenges of living with PCOS and emerge stronger.

PCOS has had a major impact on my daily life. I face a variety of challenges, from managing physical symptoms like fatigue and pelvic pain to dealing with the mental burden of infertility and body image struggles. These challenges can sometimes feel insurmountable, and even choosing treatment options for PCOS can be difficult because there is no one-size-fits-all approach. Reflecting on my journey with PCOS, I have some advice and insights I would like to share with others facing similar challenges. It is essential to educate yourself, advocate for yourself, and prioritize self-care.

For those of you dealing with the complexities of PCOS, remember that every step forward, no matter how small, is a victory. You are resilient and courageous, and you have the power to overcome any challenge. Rely on your support network, be determined, and never underestimate your own strength.