This is a firsthand account submitted through SWHR’s Share Your Story portal, as part of SWHR’s Women’s Health Perspective series.
I am a neuroscientist whose expertise is mapping the dynamic interplay between hormones and the brain. In the course of my PhD training I have read hundreds of empirical papers, taken graduate-level classes, and collaborated with experts in neuroscience and endocrinology. I work in a research lab entirely dedicated to advancing women’s brain health. I am literally steeped in a world that pays careful attention to women’s bodies.
And yet, it took years to figure out what was happening with my hormones, my brain, and my body to confirm that I have the most common endocrine disorder: polycystic ovary syndrome (PCOS). PCOS is characterized by ovarian cysts, irregular periods, and elevated levels of androgen hormones, such as testosterone. A typical diagnostic timeline for PCOS — the time between when symptoms begin and an accurate diagnosis is achieved — is two to five years. Five years? People earn a PhD in that timeframe. Why is it that it can take up to half a decade to diagnose a disorder that impacts 10% of women?
When I was in middle school, my menstrual cycle irregularities were brushed off as exercise related and I was prescribed birth control as a patch fix. I went off of birth control for the first time when I started graduate school, and I didn’t get a period for over six months. My endocrine panels also showed testosterone levels that were significantly higher than the reference range. I knew these were indications of PCOS, but confirming a diagnosis required an ultrasound. This time, my concerns were dismissed as stress related. I insisted that something felt wrong and pushed for an ultrasound. The procedure confirmed that my concerns were real. I have PCOS, a chronic condition that has no known cause, no cure, and is the leading cause of infertility in women. When I brought up worries about infertility, I was told “we’ll cross that bridge when you get there.” After years of uncertainty, I finally found a clinician who believed me, wanted to help me, and educated me about a dietary supplement (myo-inositol) that has since stabilized my condition.
But why did it take so long to get here? Why can it take five years to receive a diagnosis for a disorder that impacts one in ten women? I can’t help but wonder how much sooner I could have known about my diagnosis and been able to address it if birth control wasn’t handed out as a patch fix, or if women’s voices were taken seriously.
The irony of my situation is not lost on me: I am a female PhD student in neuroendocrinology working in a lab that shines a spotlight on women’s bodies, but I still fell victim to medicine’s ignorance. The worst part of my story is that it’s not a unique one. It’s a broader echo of medicine’s failure to listen to women. In response to this, my goal is to find solutions both empirically and policy-wise so that other women do not have to experience what I did. In my role as a neuroscientist at University of California, Santa Barbara, I am leading a study to examine how endometriosis and PCOS influence brain health. Understanding the neural impact of these extremely common yet understudied reproductive disorders is one step forward for women’s health. I hope that discussing women’s health within our community can be a first step toward influencing the next generation of young women to be advocates for themselves as they come to understand their changing bodies.
By incorporating topics like reproductive endocrine disorders, pregnancy, and menopause into the broader dialogue and into required curriculum — from elementary school health classes through medical school — we have the opportunity to transform medicine so that it can finally serve women. Our lives depend on it.
Versions of this story have previously appeared in the Santa Barbara Independent and on TedX Talks.