Why Not Talk about Diabetes and PCOS?

Perspectives

Why Not Talk about Diabetes and PCOS?

It’s the end of July, and I have my 3 month endocrinology appointment with a brand new endocrinologist. At this point I have now had my period for a month. This endocrinologist had been great so far with everything happening with my period and new diagnosis. I was optimistic about liking her, but I wasn’t excited about this appointment. By now, I attended six doctors appointments in one month (not counting my counseling appointments). I’m also beyond burned out on logistics and can feel myself approaching diabetes burnout. I even debated canceling this appointment, but my gut told me that I needed to go not just for the diabetes. I should go for the PCOS and the thyroid.

I knew that there would probably be no patterns in my numbers and my a1c probably went up. This is a struggle with me because of my OCD and how I feel towards numbers. I believe they are just data, but it’s hard not to place value on them. My period messes with my blood sugars and creates a roller coaster that is hard to get off of. I try my best to work with it. However this period was a beast and ride of its own. The endocrinologist also told me to run higher right now because of how unpredictable my blood sugars were being. My blood sugars would drop dramatically for now reason frequently. This all continued a vicious cycle with my anxiety that drove me up a wall.

When I first walked in, they drew a lot of blood. I found out that my A1C went up .5 in just 3 months which is a big jump for me. I already felt defeated regarding my health, and this exasperated those feelings. The doctor looked at me, and said “I know diabetes is very tied to your mental health. Obviously your A1C would go up right now because of all of this. You’re doing what you can with so many unknowns and so many trials and errors.” I felt reassured when I heard these words since I’m my own worst critic.

We then talked about my thyroid. She told me a new diagnosis was definitely coming, but we needed to figure out what exactly. My thyroid numbers were all over the place and didn’t really make sense together. My numbers were also changing drastically each time someone did bloodwork.  Nothing was making sense (what a surprise recently). She said it’s definitely thyroiditis right now and heading towards hashimoto’s.

We then talked about the PCOS experience so far. I told her about my most recent OBGYN appointment, and she said she would really like to talk to them because this was not okay. For once, I didn’t want to fight this battle, and I gave her the go ahead.  She wanted to be kept in the loop and said that if something happens to let her know, and she can help to escalate my appointment if needed.

After we determined there are absolutely no patterns to work through in my diabetes, she asked me if I wanted to talk about anything else.

Oh boy- did I!

A main question and a bitterness stuck with me during everything. Since I wasn’t getting anywhere and heard more “me too’s” about PCOS and diabetes, fuel was constantly being added to my fire.

I let my frustration explode just a little bit in the doctor’s office.

Why doesn’t anyone talk about this? PCOS and Diabetes? Where are more resources, research, discussions, and screening? Why do we talk about everything else associated with diabetes, but this is in the dark? There is no reason it should be.

I brought up a recent study that was sent my way. I acknowledged that the study is limited, but again something was adding fuel to my fire. “Type 1 Diabetes and Polycystic Ovary Syndrome: Systematic Review and Meta-analysis”

Why have I’ve grown up with scare tactics about taking care of myself to avoid complications?  But those complications are still only a chance and tied to many factors.

I get screened for celiacs and screened for thyroid issues. But there’s still just a slight chance.

But my chance of getting PCOS (or many other diseases related to hormones) regardless of my family history and regardless with how I managed diabetes is higher than all of that. Yet- there’s nothing.

We don’t talk about it. We don’t screen.

I feel like I was missed and that others are being missed, and I want to know why. I know it’s taboo, but that’s not an excuse.

After I finished my rant, she looked at me and began to talk about that for a while- the only focus was diabetes. We barely acknowledged anything that might be associated with it. We still struggle with that now and focus on a select set of things. As a community, we also don’t think about the fact that type 1 and PCOS can be related, but the discussion is still limited for type 2.

This isn’t an excuse. We do need to do better. This shouldn’t be taking so long, and it probably should have been addressed earlier. This is not okay, and I’m sorry you have to deal with this.

Right then, I felt appreciation for the healthcare provider sitting in the room with me. She wais one of the first healthcare professionals to look at me and say- it is not okay. It shouldn’t be this hard to get things going either. I’m sorry that you’ve had your period for so long and that it is messing with your blood sugars. It’s not okay, but you’ll find a way to get this sorted out.

It was nice to finally hear that, but that also reminded me. I don’t want to find a way. I want it to be fixed already. I’m tired of fighting and trying to figure it all out. I just want my period to end.