I Struggle with PCOS and Type 1 Diabetes
A woman diagnosed with Type 1 grows frustrated with the dearth of information on the condition.
I sleep through a CGM alarm, again. I never do this, but this week I do it several times.
There are other symptoms, too, but I don’t connect the dots. I’ve been extremely hungry, but I think it’s because of a new walking commute. My blood sugars are everywhere, but that’s life.
And then my period comes two weeks early. I know this because I am meticulous and because it affects my Type 1 diabetes. I normally make changes in my blood sugar routine prior to my period to help with the swings, and I start checking for ketones regularly. I’ve also been on birth control since the age of 14, and this isn’t supposed to happen.
I’ve been having problems with my periods since my first one at the age of 13; there was severe pain and drastic blood sugar swings. It took a year to get anyone to put me on birth control because I was in the Deep South and birth control was not a go-to option to help a teen regulate. Besides, doctors would say, my problems with my period were probably the diabetes’ fault anyway. After several hospitalizations I am eventually put on birth control.
When my period comes early, I call my physician. After hearing my symptoms, she orders blood work. Her gut says it’s PCOS, or polycystic ovary syndrome. She tells me to set up an appointment with an OB/GYN.
I look up PCOS, and I see that I have many of the signs – the acne, the excess hair growth, the sweatiness, the pain. I read about the risks, and then the limited treatment options. I’m not pleased with what I find – contraceptives and fertility treatments, with surgery for extreme cases.
I Google PCOS and diabetes and find I am more at risk for the syndrome because of my Type 1 diabetes; people with PCOS are also more at risk for Type 1 diabetes. This is when my anger boils. With all the scare tactics thrown at me about why I needed to control my diabetes, no one told me about this.
What’s online about this connection is scarce – a few medical journals and posts, limited patient voices. I post about PCOS on some online diabetes groups, and that’s when the “me too’s” start flooding in. I receive messages from women who have been through it, and they give me the most helpful information I’ve received to date.
I go to a new OB/GYN for an ultrasound. Afterwards, she doesn’t provide many useful suggestions. She advocates for a stay-the-course and wait-and-see approach. I start to cry in her office. Eventually my period stops after some three weeks, but I still feel like I’m on my period. Then four days later, it starts again.
I look for a different OB/GYN, and the wait for an appointment is two months or more. I make a note to grill by endocrinologist at the next appointment.
Eventually, my period seems to end, but I still feel off. I’m exhausted. I can’t muster the energy for my normal workout routine. My blood sugars are still off. I’m still cramping.
I wait for the next period. I am fearful of how long I may need to wait for a treatment plan that will make a difference.
This story has been edited for clarity.
If you would like to read an overview about PCOS, please go to https://www.womenshealth.gov/publications/our-publications/fact-sheet/polycystic-ovary-syndrome.html.
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