PCOS

Polycystic Ovarian Disease (or Syndrome), PCOS is an endocrine disorder that gets its name from one of the symptoms - cystic ovaries.  I was first diagnosed with 'cycstic ovaries' in college, but didn't not receive my official PCOS diagnosis until a few years ago - although I had diagnosed myself and had to fight to get treatment.

See, the most common treatment - and how I was treated in college & all through my twenties - is with birth control pills.  These do shrink the cysts, for those who have them, & help with some other symptoms such as heavy or irregular periods, but they do nothing to treat the underlying cause - which is an elevated level of insulin in the blood.  You see, similar to diabetes, PCOS is caused by a resistance to insulin or the body's inability to properly use insulin.  However, opposite of diabetes, instead of not making enough insulin & resulting in high blood sugar, the body creates MORE insulin to compensate.  The result is devastating to the body.  Blood sugar plummets (hypoglycemia is a classic symptom of PCOS) and weight gain occurs because the excessive insulin stores all blood sugar as fat in the body immediately.

In addition, too much insulin in the body wreaks havoc on the entire metabolic system, causing most hormones to stay out of whack.  Estrogen & progesterone (female hormones) are typically low resulting in missing or irregular periods.  Testosterone & other male hormones are frequently high resulting in acne, excessive body & facial hair & even possibly male pattern balding.  The adrenal glands can become depleted from working too hard.  The hardest for most women, if left untreated the hormonal imbalance halts ovulation resulting in infertility.  The cysts on the ovaries are actual eggs that never burst or ovulated.

As you can see, a simple birth control pill only controls a few of the symptoms and does nothing to promote ovulation.  The only true treatment is to address the underlying insulin resistance, usually with Glucophage - a diabetic drug that increases the body's ability to process insulin.  With better insulin control, the body stops compensating by creating more insulin and the resulting symptoms regulate -- hopefully!

Diet is another important treatment aspect.  Controlling sugar intake can keep the body from producing more insulin so it's important to limit sugar -- even though the cravings are strong & real (not at all in your head) since blood sugar is low from the immediate storage of all sugar as fat in the body.

So, why is PCOS so hard to diagnose?  Well, first of all many doctors think a simple glucose tolerance test will show, but in actuality most PCOS'ers have a normal glucose tolerance test b/c of the excessive insulin created to compensate for the sugar intake.  The only true way to test is to run a glucose tolerance test AND test insulin levels at the same time.  Someone with PCOS will show normal blood sugar levels & sky rocketing insulin levels.

I'd had numerous glucose tolerance tests -- all came back normal of course.  Nothing could explain my weight gain or my hypoglycemia.  I was always active so my weight wasn't a big problem, but I was considered slightly overweight.  In my mid-twenties I lost weight by really monitoring how much I ate.  I was fainting all the time & really struggling with low blood sugar.  My doctor told me it was simple - I needed to eat more.  So, I focused on my health (I thought) and started to eat more.  I stopped fainting and gained 10 pounds.  The doctor couldn't explain this -- just said I had "low metabolism."  Yeah, right, if that was true I'd be able to eat less & stay thin.  So I lived that way to 10 years.

In 2006, just after I got married, I started worrying about the fertility implications of PCOS.  Even though I hadn't ever been officially diagnosed, I was positive I had it and wanted the proper treatment.   I researched doctors in the area and my search led me to my current MD, who ironically is also my LLMD.  I'm so blessed to have found her!  She tested my insulin levels, not just my blood glucose levels.  She's treated me for the PCOS and was also astute enough to realize that I'd been untreated for so long that my body was completely out of whack.  She's the one, who based upon some other symptoms, suggested I get tested for Lyme, but more on that story later ...

My current treatment for PCOS is Glucophage and dexamethosone.  Dexamethsone is a steroid usually used as an anti-inflammatant for arthritis.  However, it has an off label use to decrease male hormones, such as DHEA-S, which can increase some of the PCOS symptoms and double the risk of miscarriage.  I also watch my diet closely (not just for sugar, but for gluten -- we'll talk about that on the celiac post).  Exercise used to be a key component as well since it helps regulate insulin and helps control body weight, but with the Lyme and the CFS I'm not able to exercise much any more.

On Sunday our lives will change, hopefully forever.  We start our IVF cycle.  Yes, on Mother's Day.  It takes a month so the final transfer of the embryo happens in June, but we start the injections this Sunday.  I'll keep you guys up-to-date about my journey the whole way, especially as it relates to having Lyme & CFS (yikes!)  As if pregnancy won't be hard enough, I'm throwing in fertility meds.  Call me crazy.  Call me a glutton for punishment.  But I will say, I've also wanted a large family and I LOVE being a mom, so I know that for one second I won't regret the decision.  Ladies, start your roller-coasters!

To read more about PCOS, please visit PCOSupport.