Ali's PCOS Journey

My personal journey with PCOS began at the age of 14, when I noticed gradual weight gain that seemed resistant to my efforts to lose it. Frustrated, I resorted to extreme measures like starving myself, which only resulted in binge eating. What I didn’t know then is that PCOS was leading to my constant struggle with weight. Despite doing everything I could to lose or even maintain my weight, it continued to creep up. It led to a very painful binge eating disorder that I went on to battle for close to 12 years. Binge eating and over exercising, which constitutes bulimia, became a daily struggle, and stole what should have been some of the best years of my life.

When I turned 16, I experienced my first period, but I didn’t have another period for about 6 months. This irregular cycle became the norm for me, with periods occurring every 6 to 12 months. During my doctor visits, ultrasounds revealed cysts on my ovaries, but I was repeatedly reassured that “cysts are normal.” I also struggled with acne for most of my teenage years and was treated with Accutane twice. While I saw results after Accutane, they were short lived. This is because the acne I was struggling with was hormonal, and Accutane cannot fix a hormonal imbalance.

When I started college, I knew I wanted to be a Registered Dietitian. There was a hope that maybe I would learn some secret to losing weight that I didn’t yet know. Unfortunately, nothing that I was learning in my studies was working. This led me to always feel like a fraud, like I didn’t belong in nutrition classes because of my weight. Not to mention, I was struggling with crippling anxiety that sometimes made it difficult to attend class.

In 2008, I was finally diagnosed with PCOS. I was 21. Despite the fact that I was close to graduating with a bachelor’s degree in nutrition from one of the best schools in my state, I had never heard of PCOS. I remember being told by the nurse practitioner, “You have polycystic ovary syndrome, or PCOS, and you will need to watch your weight.” Then she gave me an educational brochure and sent me on my way. She gave me no explanation on how my weight could affect my ovaries.

After graduating with my bachelor’s degree in nutritional sciences, I needed to seek out additional opportunities to learn as much as possible about PCOS, so I decided to pursue a master’s degree in nutrition & metabolism. I wanted to keep learning to help myself and, hopefully, one day, help others. What I came to realize was that opportunities to learn more about PCOS were scarce. None of my graduate-level nutrition curriculum included PCOS, and while completing a 9-month internship to become a Registered Dietitian, not once did I ever learn about PCOS during that process. In fact, there was not a single question about PCOS on the exam to become a Registered Dietitian. This is why I am skeptical when I see Registered Dietitians who claim to be PCOS experts.

I graduated with a master’s degree a few years later and still felt the need to keep going. I had read everything I could get my hands on about nutrition, insulin resistance, and PCOS. After all this self-study, I developed a theory about how perhaps we are providing the wrong nutrition recommendations to women with PCOS. They have a unique metabolism that warrants a unique approach. This is when I developed the concept behind a Low Insulin Lifestyle and decided to pursue a doctorate degree to test it out.

Over the next 5 years I took every opportunity I could to learn more about reproductive endocrinology. Thankfully, I had access to an academic hospital where classes and labs on reproductive endocrinology were offered. Without this in-depth and hands-on understanding of reproductive endocrinology, it would have been difficult to truly become an expert and grasp the hormonal imbalance these patients experience.

I was also lucky to have access to an amazing local reproductive endocrinologist who specialized in PCOS, Dr. Jennifer Phy. I approached her with my study idea of testing a Low Insulin Lifestyle in patients with PCOS and if she would be interested in referring patients into the study. The rest is history. The results from the study were better than I ever expected. I was able to present this research both in the US and internationally and it resulted in several peer-reviewed publications. More importantly, the results were replicated in a large, randomized controlled trial.

After completing the study, I was accepted into a National Institutes of Health (NIH) funded postdoctoral research fellowship to continue my research in nutrition and PCOS. While completing this fellowship, I met my husband, Johnny, who is now the COO of Lilli Health. His love and support has enabled me to pursue my dream of starting a company to help teach women everything they need to know about nutrition, insulin resistance, and hormonal imbalance.

I am beyond thankful to say that it has been 10 years since my last binge. When I look back on what were supposed to be the best years of my life, I see pain and frustration. If I had known at 16 what I know today, it would have changed my life. So I am launching Lilli to help you change yours.