Having PCOS Taught Me How to Advocate for Myself

When I was 15, I was diagnosed with polycystic ovary syndrome, or PCOS. It had been two years since my last period, and my pediatrician was concerned about my “overweight” BMI (I now know that BMI is a flawed measurement and that my weight was just fine). It wasn’t until I went to an endocrinologist (a doctor that specializes in hormonal conditions) that my hormone levels were tested—sure enough, my testosterone levels were elevated, and I was diagnosed with PCOS.

PCOS is a hormonal disorder that can cause ovarian cysts, excess hair growth, and irregular periods. It can also lead to infertility, metabolic dysfunction, and more. I’ve lived with this incurable disorder for over a decade, experiencing a number of disruptive symptoms along the way. Though I would never choose to have PCOS, it has made me a better advocate for myself and for others.

For the first seven years after my diagnosis, my periods were accompanied by horrible side effects, like intense cramping, bloating, and more. In college, I would get the “period flu” — every time I got my period, I had intense flu-like symptoms. I tried four different brands of birth control pills and multiple regimens (e.g., taking 2 or 3 consecutive packs), yet none of these treatment plans worked for me.

The frustration I felt was compounded by the challenge of finding the right provider. The endocrinologist who first diagnosed me was constantly overbooked, leaving me in the waiting room for hours. With my next several providers, I never saw the same one more than twice because of scheduling difficulties. This meant that every year, I had to retell my story, explain again why the pill regimen I was on wasn’t working, and be told that I needed to give it more time.

I usually left my appointments feeling irritated and dejected. I hated feeling sick every month and being gaslit into thinking I wasn’t doing enough to help myself. But with every appointment and new provider, I became a better advocate for myself. When I was asked if I was sure my symptoms were that bad, I didn’t waver. When a treatment wasn’t working for me, I learned to insist on trying something new instead of “giving it another few months.”

Thankfully, my providers finally started to listen. Four years ago, I stopped taking the pill and had a hormonal IUD inserted, stopping my period and all the awful side effects that came with menstruating. No more period meant no more cramping, no more bloating, no more period flu.

I’d love to say that my PCOS is fully under control now that I have an IUD, but that is not the case. I’m still struggling with some of my original symptoms, along with a couple new ones that come with additional treatments. I was recently diagnosed with androgenic alopecia, a form of hair loss caused by too much testosterone, and now use both topical treatments and a daily eight-pill regimen to reverse it.

I’m also coming to terms with the fact that my negative experiences managing my PCOS in a fatphobic society have left me with complicated relationships with food, exercise, and my body. I’m still “overweight” according to the BMI chart, but I’ve learned that BMI and weight are not good indicators of health, and the size of my body doesn’t mean I’m unhealthy. In fact, my bloodwork indicates otherwise.

As I continue to navigate the reality of living with this disorder, I know how to trust my experience and advocate for myself. So, while they may be the experts in their field, I am the expert on myself. Lived experience is important and valuable, and I will remind every provider I meet of this fact.