The Undiagnosed PCOS

I am a woman living with PCOS. To be exact, I am the one in ten women living with PCOS. PCOS is the leading hormonal disorder among women of reproductive age and the main cause of infertility. I recently stumbled across an article in Health magazine (October 2009 by Harriet Brown and Kimberly Holland) that actually speaks frankly about it as one of the top 7 women’s issues that Doctors still miss today.

PCOS is most simply a woman having an imbalance in insulin (which regulates blood sugar) and causes the typical male hormones to have too high of levels (all women have them but in a woman with PCOS, they are higher). The abnormally high levels of insulin also “bombard the ovaries, causing them to produce too much testosterone and develop cysts. Half of all women with PCOS end up with pre-diabetes or diabetes.”

Symptoms include:
Irregular periods or none at all (check)
More hair on face, chest, back, and limbs (check)
Acne (check)
Baldness (thank goodness that’s not a check for me)
Rapid, substantial weight gain that seems impossible to control(triple check and check some more)

There is no conclusive test for this disorder but several small tests plus your symptoms can help a Dr. determine a diagnosis. “Check your reproductive organs for signs of masses or growths using a pelvic or vaginal ultrasound and physical exam. Blood tests are used to measure levels of glucose and several hormones; they also can exclude abnormalities, like hypothyroidism, that mimic PCOS.”

Unfortunately, there is no fix for PCOS. There are treatments that focus on the symptoms and help with fertility issues, limiting risk of diabetes and heart disease. “Birth Control pills help regulate menstrual cycles, lower androgen levels, reduce hair growth, and clear up acne. Metformin, which controls blood glucose and lowers testosterone production, can help you lose weight.”

Birth control has its own set of side effects and risks though especially after 35 years of age.

I have dealt with PCOS since puberty even before I knew I had it. Had I been properly diagnosed back then, I may have avoided some of the things I have been through in my life and been properly prepared for the fertility issues I faced. PCOS is very real and very painful (emotionally). PCOS can also trigger other issues like Chronic Fatigue Syndrome due to the hormonal imbalance. Being diagnosed with PCOS does not provide an instant remedy or even a totally confined diagnosis/path.

What really hit home about the article is that “More than 40% of women who are eventually diagnosed…have basically been told that they’re just too concerned with their health or they’re a hypochondriac.” What it forgot to say is that we’ve also been told “there is no reason, you are just fat because you eat too much. Quit putting food in your mouth and get off your lazy arse.” Yea, because in a body conscious society when you are trying every diet known to man and nothing is working, a comment like that is going to help.

We have been stigmatized, made fun of, struggled and defined by something most of us didn’t even know we had. I’ve become a stronger person since being diagnosed. I know more about my body then I ever hoped to (with much more to learn) and I have found a passion to share my knowledge with others and teach my children so they do not suffer from ignorance.

Knowing is half the battle. Arm yourselves with knowledge and help others get the tools to fight. Through information, proper diet, modern medicine etc. we can help ourselves and others to be prepared and live with a brighter future. Pregnancy does not fix PCOS and nothing I do will ever make it go away.