September is PCOS awareness month and Cassandra Tuiasosopo has been kind enough to share her resilient story of living with PCOS for many years and the effects it has on your body and mind.
My name is Cassandra and I work for the NHL. Over the past few years I have been a strong advocate for those fighting Polycystic Ovarian Syndrome. The statistics around this disease are shocking:
PCOS affects 1 in 5 women in this country
50% of women with PCOS go undiagnosed or are misdiagnosed
50% of women with PCOS become diabetic by age 40
Women with PCOS are 3x more likely to develop endometrial cancer
Women with PCOS are 7x more likely to attempt suicide
Women with PCOS are at 7x greater risk of heart attack
Despite these statistics, the research surrounding PCOS is minimal. As a former athlete, I would pride myself on my strength and physical capabilities. But when I was 19, I started noticing some changes in my mental health, physical stamina, and began to feel extremely tired. I felt as though I wasn’t absorbing nutrients from my food, and after increasing the amount of time I spent in the gym I quickly gained weight. The first doctor I went to was an endocrinologist. He knew something was wrong when measuring my body’s stress levels. He said, “Are you okay? Your body is under a lot of stress.” I was naïve and answered, “Well, I am stressed. I’m in school and a business major and it’s very stressful.” He shook his head and said, “No, not your mental stress. Your physical stress.” I didn’t understand at the time. He sent me on my way with no answer, no explanation, just a statement that my body’s stress hormones were off the charts. I was dismissed and told to lose weight.
A few years later I was diagnosed with PCOS by a general doctor who also sent me on my way with no explanation or solution, just a statement of fact, “You have PCOS. Just lose the weight and you’ll be fine.” The following year, I had an ultrasound done on my ovaries to determine the severity of the cysts…no cysts were found on my ovaries. I was told that I was misdiagnosed and do not have PCOS, then dismissed again and told to lose weight. I thought to myself, “Don’t you think I’ve tried that? I’ve been on a diet since I was 13.”
Things continued to get worse. My face seemed puffy, I developed anxiety which I had never had before. I gained 60 pounds in a 3 month period with no dietary or lifestyle changes. I went to a new doctor who did confirm that I indeed have PCOS. They explained metrics for a diagnosis are constantly changing. You do not need to have cysts on your ovaries to have PCOS. You could have high testosterone, acne, facial hair, weight gain…so many different markers just to explain WHAT YOU HAVE.
Despite finally getting diagnosed, I was still searching for answers. Why is my testosterone high? Why do I keep gaining weight? Will I ever lose weight? Why am I so tired at 25? Will birth control help? Why am I being given pills meant for diabetics? Why is this medication not helping the way I FEEL?
I took it upon myself to research and seek out functional medicine doctors, naturopaths, anyone else who could help me to stop feeling so awful. Unfortunately, I found that PCOS is truly unique in every single woman. No two women are affected the same way by the debilitating disease. Even in a sea of women with PCOS, you can still feel alone because one woman found help through veganism, another woman found help through birth control, another woman’s PCOS was exacerbated by birth control. There are so many unknowns, so many women suffering, and still no answers.
I began to understand as much as I could about the disease. I attended online seminars in my free time, listened to podcasts from holistic medicine and shared my story on social media. I found so many women struggling like me, so many women who were not diagnosed and didn’t know how to seek out a diagnosis. The anxiety around the lack of information and answers from medical professionals continued to grow. Not only does PCOS cause severe inflammation in the body, but also in the brain. Combined with the natural anxiety that stemmed from the disease, the anxiety was heightened by birth control and other medications such as Metformin that were often prescribed. Eventually the anxiety worsened around the constant dismissal and condescending nature of conversations with doctors saying, “Just lose the weight,” but with no advice on how to do so when you have a disease that literally causes weight gain. Why is nobody listening to me?
The question resurfaced with every single visit to a doctor, why is nobody listening to me? And the anxiety continued to grow. When can I find a doctor I can trust? Will I ever feel like me again?
Last year, when using my platform to spread awareness about the disease I connected with an old friend from middle school. She told me her story and how she’s been battling since high school and what she’s done now to help alleviate her symptoms. It all came down to advocating for her own health. I followed suit and spent every minute of free time and every dollar of disposable income to focus on improving my health and every day life. I created a spreadsheet of all of my symptoms and presented it to my doctor. “Thank you for trying to work with me. I have all of these symptoms and have been seeing you for a year. Unfortunately, none of my symptoms have subsided. Here are my symptoms, if you are not able to help me with these could you please refer me to a doctor who can?” BOOM. I had talked to my doctor verbally about all of my symptoms before, but when I laid them out as a visual for her to see she began to listen and tried to connect the dots. I began to seek out therapy, specifically a therapist who I could discuss the woes of dealing with an uncurable disease and constant medical judgment with. I began to take back my power and health.
This disease is debilitating, and the mental toll from never getting answers from doctor after doctor can easily cause a woman to feel defeated and dismissed. Though I don’t believe it should be this way, I think it’s necessary for us to fight for and advocate for our own health. Come prepared with a list of questions. Create a spreadsheet with your symptoms and what you’ve tried and if it helped or if it didn’t. GO TO THERAPY and talk about the difficulties surrounding the process. We deserve better and we will get there. Until then, speak up, reach out, and fight. You are not alone.