When I was in my mid-30s and started researching what PMOS/PCOS actually was… I was angry for a really long time. 

I was diagnosed with PCOS as a teenager, and yet it was quickly dismissed by doctors as something that happens to a lot of girls/women (especially Native women) and they would address it if I ever wanted to try having kids. Literally – “We’ll worry about that if you ever want kids.”

So when, decades later, I read books by actual PMOS/PCOS experts, and all the things I could have been doing to address it, I was calculating the years upon years of health struggles and painful episodes the symptoms/problems of PMOS literally took over my life for months on end. There were more than a few times I considered a hysterectomy – in my early 30s – to stop all of these symptoms that were regularly what I would have to plan life around.

And then I found out there were things doctors could have been addressing all this time. But it didn’t matter because all that mattered with my body was its ability to reproduce.

Half a million Native women have PMOS – what was called PCOS until just yesterday. The renaming seems superfluous unless you understand that PMOS – and women’s health in general – is tragically understudied, mischaracterized, and dismissed. For Native women and other women of color, exponentially so. A simple name change that experts have been asking for for years is a positive sign. Native women have some of the highest incidences of PMOS, and I personally think that we are under-diagnosed, so my guess is even higher than is recorded. 

An interesting thing I found when I was experimenting with a PCOS/PMOS-friendly diet, with GREAT success, was in all its restrictions. While very restrictive, I had virtually done away with most symptoms on it. I was listing the restrictions to a friend and he asked what I wouldn’t be able to eat from a “traditional” Tlingit diet and… there were absolutely no restrictions. When I was feeling my best self with this “disorder” was when I was eating closest to how my ancestors have eaten for millennia. 

Way more research needs to be done on PMOS, and all women’s health. But while we’re doing that, let’s also focus on what Native and Tribal communities have been doing right, and see if research into getting us closer to how we used to live healthy lives before being forced to stop brings up any gems. And after the research, maybe funding? Maybe education? Just some thoughts.

At its most basic, PMOS is a hormone disorder. And what an education I got into how much we are ruled by hormones. For people with PMOS, one little bump in regulated hormones can quickly become a cascade effect on everything. Insulin is a hormone. Testosterone is a hormone. Melatonin is a hormone. Cortisol, leptin, adrenaline, dopamine – all hormones. One of those getting knocked off course can make them all go severely wonky. And that is everyday life for people with PMOS. Trying to signal to your body one thing while it’s doing the opposite in 50 different directions. 

With a very understanding doctor, some medications, years of lifestyle changes, and a lot of having to trial things on myself, I’m finally in a decent spot with PMOS. It took me until my mid-40s. I almost hesitate to say I’m doing well because things can go awry so quickly with this hormone disorder. But there are ways this doesn’t have to be your normal. And I really want that for all my Native friends and relatives.