PCOS...It's Not Pretty

I’ve been meaning to write about this for quite a while now. It, among other things, is really the bane of my existence. I can’t really write anything funny about it – it’s just not a funny thing. This is more about sharing some information and a little about my story with PCOS.

What is PCOS?

Polycystic Ovary Syndrome. The basics are that women with this disorder have really screwy hormones. We seem to produce enough estrogen to give us curves, but we also produce much more testosterone than our bodies need. Our monthly cycles are iffy. Maybe one or two a year. Or more. Or less. Our ovaries think they are ovulating, but they really don’t complete the cycle and we’re left with a “cyst” where an egg should have released. Unless we are on the pill and /or don’t have a cycle every 3 to 4 months, we have to take progesterone to force a cycle. To not do so is putting us at risk for endometrial cancer.

We tend to hold onto our body weight and to actually lose weight successfully requires so much more of an effort. It's not hard to give up when what we need to do is give it that little extra push to get us over the hump. It's depressing and hard to stay motivated when the results of our efforts are so slow to reveal themselves.

Our fertility is highly compromised. There are treatments to help us complete an ovulation cycle and but the success rate isn’t wonderful. Clomid, which comes in a pill form, is one. I’ve done that a few times. It’s not so bad, but it was ineffective. Fertility shots are another option. They come in needle form. I have been all over the place with these drugs. I had the hardest time stabbing myself in the upper thigh. I even had my stepdaughters (ages 15 and 11) giving me shots (they were so brave!). Fertility drugs put you at risk for ovarian cancer. Then there are the big guns – IVF.

This hair issue is hard for me to confess. Because of the increased testosterone level, I am blessed with extra hair in places I really don’t want it. It’s such an emotional downer. Women are supposed to be pretty. We’re not supposed to have 2-inch goat hairs sticking out the sides of our neck. I spend a great deal of time hunting these things down and eradicating them. I keep a mental “map” of where they are so I can be sure to catch them before they get too wild.

In addition to shaving and plucking, I also take a drug called spironolactone, which is actually a diuretic that acts on the adrenal glands and helps reduce the amount of free testosterone in the blood, which, in turn, reduces the amount of testosterone that gets to the hair follicles and so, results in less hair growth in places I don’t want it. You can't take it, however, if you are trying to conceive because it causes fetal defects.

Carbohydrates are our nemesis. We develop glucose intolerance, high cholesterol, eventually high triglycerides, and finally, type 2 diabetes. Not everyone, but a pretty high percentage of women with PCOS go on to develop what’s called Metabolic Syndrome.

My Story:

I was first diagnosed with this at about 20 years old. I wanted to get pregnant. I wanted babies when I was young so I would be a young mom. But we weren’t having luck. I went to the doctor and he diagnosed me with PCOS. It wasn’t such a common problem as it seems to be now. I’m really surprised at how many women live with this. I know of five others close to me who suffer its effects. Three of them are still in their early to mid 20s. To them, I say DO NOT WAIT to try to conceive and have your babies. DO follow your doctor’s orders for metformin or other glucose-lowering medications. Until you are ready to try to conceive, DO go on the pill; it protects your ovaries from further cystic damage and reduces your risk for uterine cancer. If you’ve been diagnosed young, realize it’s a lifetime process. Take good care of yourself in every way. Watch your weight and carbohydrate / sugar intake. Don’t smoke cigarettes!!! Get plenty of exercise. Treat yourself well.

There are lots of web sites with information on PCOS, but this is one of my favorites, with lots of support and information all in one place: SoulCysters

As for me, well, fertility treatments were not successful. I’ve had three early miscarriages, no full-term deliveries. Three Clomid cycles, six injectable cycles. No consolation prize. I must also add that if you’re thinking of fertility treatments, please seek the help of THE BEST reproductive endocrinologist…get the BEST treatment you can!

I’m nearing 50 years old. It sounds old. Egads! But why don’t I feel so old? I guess really, I must be getting old…I am now dealing with consequences of hormones gone wild, and not taking the best care of myself as I could have done. It looks like I’m facing a new diagnosis of type 2 diabetes. It hasn’t been confirmed just yet, but all of my lab results are shooting at that target. So now, my hand is forced…I HAVE to do better at taking care of myself. If I haven’t done what I need to do thus far, it’s really going to be a challenge to start now. Some things, I won’t be able to fight. That’s just the way it is. But some things, I can. And I will.

Let The Games Begin….