A Story About PCOS

This was originally posted to my blog, Diabetes Odyssey.

I lay in bed wide awake last night. I was so tired but I could not turn off my brain. Memories flooded behind my eyes, not the good ones, the bad memories one would just love to forget. Then the memories turned to what ifs. What if my childhood had been different? What if this or that had run its course a little differently?

I’m a realistic person, I never allow myself the pain of wondering what life would have been like if I had never gotten type 1 diabetes. But I did wonder last night what life would have been like if my diabetes had been controlled all these years.

Would I still have retinopathy? Would I still have coronary artery disease? Would I still have these huge scars from the heart surgery? Would I still have neuropathy? Gastroparesis? Would I have children?..

But the big question I asked last night was, what would have happened to my diabetes control if I had been diagnosed with PCOS (polycystic ovary syndrome) at puberty instead of 24 years later?

Most women who have PCOS develop it at puberty, it may not be heavy in symptoms at that time, but it’s there, wreaking its terrible war upon the hormones and body of its unsuspecting and innocent victim.

For someone like me, a type 1 diabetic, the effects of PCOS were double in trouble. PCOS causes higher levels of testosterone in the female body, which in turn causes insulin resistance.

I had a ton of trouble controlling my blood sugar levels. At it’s highest my A1c hit 16! That’s an average blood sugar over 400! Can you imagine living like that?

I didn’t know I had PCOS, none of my doctors thought there was anything other than type 1 diabetes going on here, and the blood sugar troubles were simply the fact that I didn’t try to take care of myself.

This was partly true, I rebelled against my diabetes. I rebelled because I was afraid of it. I also rebelled because even when I tried to control it I still couldn’t bring down my numbers. So rather than work harder at a losing battle, I just gave up. I thought I was the worst failure at diabetes ever, and everyone around me agreed, so I just let myself fall into the depression of a constant failure.

We didn’t know I was insulin resistant. We didn’t know I had a hormone imbalance, PCOS. No one bothered to check into this.

It wasn’t until I was in my twenties that I even ever heard of a condition called PCOS. I was watching a documentary medical show about people who have mystery illnesses(in the end they always figure it out). This woman was describing a lot of the symptoms I had (but mine weren’t so bad that they worried me). She had a couple symptoms I didn’t have, but the fact that most of her symptoms matched mine I began to wonder. I did research on this condition called PCOS and the more I learned about it (which wasn’t much at this time) the more I thought I just might have a case of this.

  • weird patches of dark skin here and there
    -very difficult to lose weight, but very easy to gain!
    • as a woman, too easy to build muscle mass
      -excessive hairiness on knuckles, arms, legs, face
    • irregular periods and flows (mine weren’t extreme, but notable)
      -Acne and oily skin
    • infertility (even though I didn’t use birth control, I never got pregnant)
      -depression (I wouldn’t admit it, but I have always had mild depression)

I didn’t learn about the link between insulin resistance and PCOS at this time (or maybe I did but it didn’t click with me) so I still was thinking my poor diabetes control was all my own fault.

I didn’t go to the doctor at this time because I had no insurance to do so, so I just went on living with the idea in the back of my mind. The thoughts faded after a few years.

It was in my mid thirties that I finally got the diagnosis. I saw a new doctor, a diabetes educator, and she was very receptive, knowledgeable, she listened to me and was willing to work with me to figure out all my problems. One thing I asked her was if she thought I might have PCOS. I listed the symptoms I had that I thought were related to the condition. She agreed with me, that I might have PCOS, and she said something to the tune of, “this might also be what’s causing your insulin resistance”.

Let me tell you here, this was the very first time in my entire life that a doctor (or anyone) had ever mentioned me and insulin resistance in the same sentence.

My mind was blown. Suddenly all my past problems were becoming clear. Could I be insulin resistant? Could all my frustration and trouble over controlling my blood sugars be because I am insulin resistant?..or at least a lot of it?

Why had I never even considered this before? It seems so obvious now.

But, alas, nothing ever goes smoothly in the life of Tiki. It would be a couple of weeks before the labs came back. And then two doctors would disagree on a diagnosis; one would say I am positive for PCOS, the other would say nay. In the end they both agreed on a positive.

It would still take almost an entire year before I would get the correct medication dosage and start seeing results. This is yet another incurable condition, but it can be treated and symptoms controlled. The treatment for PCOS is Metformin and birth control pill.

For the first time in my life I’m actually having trouble keeping my blood sugar up!


This isn’t an answer to all my problems, but it is certainly a big step in the right direction.

Tamra, another great post! I’m sorry you’ve had to go through so much over the years. The stories you post about your experiences could very well be saving others from going through the same. Thank you!

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another post that i love ! all the stuff you been through,. i don’t know many people who can do it.

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Thanks for sharing again. I read and enjoy (and learn from!) all your posts.

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Tamra, I hope that someday at a ripe old age you will write a book about your experience with the US medical system.

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This is a great post, and one that I totally relate to. I often wonder why I was not diagnosed with PCOS earlier - I was living with PCOS for many years and only discovered it when I tried to conceive (which is when I was also diagnosed with T2). It makes me angry to think about it, really.

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