Maybe you've never heard of it. It may be a new term even for women who have just been diagnosed. Healthline defines PCOS as “a condition in which a woman’s levels of the sex hormones estrogen and progesterone are out of balance. This leads to the growth of ovarian cysts (benign masses on the ovaries). PCOS can affect a woman’s menstrual cycle, fertility, cardiac function, and appearance."
I am 1 in 10. I was one of the 50% for more than 10 years undiagnosed. I should have been diagnosed, or at least had someone look into what was going on, when I was 13 years old. That's when my periods started and the pain and chaos accompanied it.
I was often hospitalized due to the pain of the cysts popping. There was no pattern or consistency to my cycle. I couldn’t prepare for the pain, or for my blood sugars. I could be found curled up in a ball in pain. I was ashamed to share why I missed band practice, because periods were taboo.
My friend Asha said it well: “Ever since that day my ovaries have been my enemy. They have been the source of mind-numbing pain and countless embarrassing situations. I have loathed every “time of the month” in my lifetime as I would become completely incapacitated by the heavy bleeding and relentless cramping.”
I wasn’t diagnosed with PCOS (and endometriosis) until I was 23 years old and living in Boston. Maybe if I had been as vocal about my periods as I am about my diabetes, this would have been earlier. But did I really need to scream it from the rooftops to get someone to look into it? Did I need to bring my diabetes into it so much for people to take it seriously? (But now I scream it from awareness to raise awareness and fight stigma- to make it less taboo).
I’ve experienced the visible aspects- the extreme acne, the access hair growth, the weight gain (and the difficulty of losing it), and more. I’ve experienced the invisible aspects of this chronic illness- the irregular periods, the impact on mental health, the cysts, the stigma, and more. I’ve sat across from a medical provider downplaying the issues with my period- the pain- the problems- and more. The comments that it’s all about the fertility. Blaming it on the type 1 diabetes (T1D). I've experienced the abosolute chaos on my blood sugars.
I’ve also experienced (well, am still experiencing) resentment with how PCOS is looked at and judged and mostly ignored- treated like it’s not real or that it’s not something significant enough to capture attention. That it’s “just a period.”
I become bitter when the main topic of conversation related to PCOS- including my diagnosis- is about fertility in the future and not my health and quality of life IN THE MOMENT.
I’m bitter that the only way I can get providers to care is when I bring up my T1D. That gets them listening- not the other symptoms or other impacts on my health. Because in my world, all that matters is the T1D- not the other things in my life- even though there are a lot of things going on as a woman with diabetes- a lot of those things that impact my diabetes and my blood sugars.
I’m resentful when I get thrown diet plans and low carb options as the only way to treat it. When honestly, all I truly need is to continue not having a period. It is the best thing for me. Not all women with PCOS are the same.
I feel sadness for my teenage self. Self-conscious about the excessive hair growth and the acne- trying to find ways to fight it and cover it up- not knowing it was battle I couldn’t win because I didn’t know what was going on. I feel sadness for my teenage self because the weight went up quickly without warning and losing it was difficult with doctors lecturing about weight when that too was a losing battle.
Periods are taboo and PCOS is taboo. PCOS is portrayed through a very narrow view if it’s really acknowledged at all. Just like type 1 diabetes and mental health, it’s different for everyone- the symptoms, the management, and everything in between.
I’m going to talk about it no matter who’s around. I’m not going to be ashamed or silenced. I’m going to fight the taboo views and myths. I’m going to search for me too’s. I’m not going to add to the stigma and hush-hush tones of PCOS. I’m not going to talk about my periods with shame or secrets- because that will continue what is already going on. Talking about it and raising awareness is what drives change.
Women with diabetes regardless of type are impacted by women's health- by things like PCOS. Even before you bring in statistics about diabetes and PCOS- there's already a chance that both could be going on. But there's research coming up slowly and surely - with the question many of us have: why isn't there more information available about PCOS, both in general AND related to diabetes?