While weight gain is a symptom of PCOS, it can sometimes simultaneously mask PCOS as medical professionals focus on weight loss as a catch-all solution to resolve other symptoms. Allara patient Keara B experienced this first-hand as unusual lab work (that included cholesterol, vitamin panels, and liver enzyme tests) came back with troubling results; at each turn though, losing weight was posited as the central focus of medical conversations. Fortunately, Keara refused to accept this incomplete picture, and went searching for the “why” behind her multiple physical symptoms.
We discuss with Keara her PCOS journey so far, what led up to her diagnosis, and all the different ways self-advocacy can manifest. Let’s dive in.
When were you diagnosed with PCOS?
I received a positive diagnosis for PCOS in 2021, but my journey has been 10 years in the making.
In high school I experienced heavy, painful periods - that also happened to be irregular - and the medical recommendation was to go on birth control, which didn’t work. Things only got worse during college as I struggled with nausea during menstruation, body pain, and weight gain; I spoke with my primary care provider and regularly voiced concerns, which resulted in a series of metabolic and lipid panels. No conclusions were drawn from these results. Instead, all the above symptoms were positioned as a consequence of weight gain - which was a symptom - but I had difficulty believing this was the root cause of my problems.
What was the turning point for you?
Initially, I went along with my doctor’s advice, and despite knowing deep down that this wouldn’t be a catch-all solution, I signed up to a diet and fitness center. I did end up losing weight, but only to a certain number, and then I would inevitably plateau. Funnily enough, around this time I was acquainted with the term ‘PCOS,’ because several women at the center also had this condition, but I never thought of myself as having it. (It’s difficult to identify with a condition that you don’t understand).
The turning point really came when I experienced a significant amount of hair loss, and I scheduled an appointment with my dermatologist. At this visit, they conducted a comprehensive exam, and after I shared all my other symptoms, my dermatologist said she suspected PCOS. That's when I was referred to an OBGYN who ordered the right bloodwork and an internal ultrasound, and I was diagnosed with PCOS. It took a decade of struggle, but finally I had validation that what I was experiencing was real, and it had a name. My next step was to find treatment.
What’s your biggest struggle with PCOS?
Advocating for myself has been a necessary, but burdensome, struggle.
I see my diagnosis as part of an ongoing fight for understanding, compassion, and solutions, as well as my own identity. Getting a positive diagnosis - and an explanation of these physical symptoms - is a win, but it also brings me to a new stage of my journey where I decide what I want to do with my diagnosis. Right now I’m noticing my self-advocacy showing up in the quieter, more reflective moments, such as when I take care of my mental health, and join discussions in communities like Allara. To me, self-advocacy can take many forms at different times, so this is how my self-advocacy is manifesting right now.
What’s the best advice you’ve been given on your PCOS journey?
By far, the best piece of advice I’ve received is to be informed and to take initiative. Afterall, without doing my own research, having open conversations (both in and outside of the healthcare system), and standing up for myself in medical appointments, I would probably never have answers to my questions. I would also urge people to keep in mind that while everyone’s PCOS experience is uniquely theirs, the journey doesn’t have to be taken alone.