Infertility is a Disease: PCOS Awareness

One of the things that has always amazed me about infertility is how people refuse to talk about it. How they refuse to acknowledge that it is a real, medically diagnosable problem. So often people hear someone is struggling with infertility and say, “Oh, you just need to relax!” or “You’re being too anxious, it’ll happen when it happens.”

Lately I’ve been struggling with being healthy. The fact is I don’t enjoy exercise or healthy eating and I do enjoy junk food. I really love things that aren’t that healthy for me. If my diet could consist solely of carbs and sugar, I would be content.

This is a big problem for me, because I have PCOS, better known as polycystic ovarian syndrome.

My weight’s been not what I’d like it to be for awhile now. I’ve always struggled with being slightly chubby, but since the twins it’s been harder than ever. While I’m not thin, I’m not exactly morbidly obese either. However obesity definitely runs in my family.

“It’s harder for me to lose weight than it is for other people!” I complained to my mom the other day.

I’m pretty sure she snorted. “No, it’s not,” she said.

This is when the arguing began. “Yes it is,” I said. “I have PCOS.”

“You can lose weight just as easy as anyone else.” She’ll deny she said that, but she did. And I sort of wanted to hit her for it.

PCOS is a disease. And one of the things this disease does is make you gain weight really easily, and it makes it really hard to lose.

I’m not sure when exactly I was diagnosed, but I didn’t become aware of my diagnosis until August 2012, when my fertility specialist looked at my charts and said, “You have PCOS. I can see it from your blood work in May 2008.”

More than four years of being diagnosed with a disease, and my gynecologist hadn’t bothered to tell me. I’m not the only one this has happened to. I personally know of at least one other person who was diagnosed by an OB/GYN but not told of the diagnosis until she went to a reproductive endocrinologist or RE, better known as a fertility specialist.

After being diagnosed with PCOS, I thought, “So it’s hard for me to get pregnant. Tell me something I don’t already know.” But then I started researching PCOS and realized it’s so much more than infertility. It is a disease, and like any disease, it has consequences.

Since being diagnosed with PCOS, I have realized just how misunderstood it is by the public. My mom’s reaction to my comment that it’s hard for me to lose weight really hit this home. It also was reinforced when people asked me the results of that first RE appointment, I told them I had PCOS, and they just shrugged and said, “So you’ll have more kids eventually, right?”

Probably. But PCOS affects more than fertility. So please, take a few minutes, and keep reading. Here are the facts.

• PCOS affects somewhere around 1 in 10 women of childbearing age in the United States, or approximately 7 million women. 
• The cause of PCOS is not known, and there is no cure.
• PCOS is a hormonal imbalance. Women with PCOS have ovaries that make more androgens, or male hormones, than is normal. It interferes with ovulation. 
• Insulin resistance is also common in women with PCOS. These women (like me) make too much insulin, and our bodies don’t know how to use it. This increases the production of androgens.

 Still think PCOS is “no big deal?” If so, keep reading. Here are some of the fun symptoms of PCOS that I deal with on a daily basis, along with 7 million other women in the United States.

• Acne.
• Oily skin.
• Weight gain and obesity, particularly around the middle.
• Difficulty losing weight. This is a scientific fact. The insulin resistance causes women with PCOS to gain weight easily and then hold onto it. So yes, it is harder for me to lose weight than most women.
• Male-pattern baldness or thinning hair (this is one symptom I thankfully don’t deal with. If anything I have too much hair)
• Pelvic pain.
• Multiple cysts on the ovaries. (These hurt. A lot.)
• Anxiety or depression.
• Sleep apnea.
• Excessive hair growth. Yeah, I have sideburns. And it sucks. At least I don’t have the beard, but a lot of women with PCOS do. And guess what? It’s embarrassing.
• Infrequent, absent, or irregular periods.
• Infertility. If you don’t ovulate, you don’t get pregnant.

The symptoms can be managed through diet and exercise and medication. But it doesn’t go away. Ever.

Women with PCOS generally struggle with infertility (like me, although PCOS isn’t the only factor I deal with). However, when they do get pregnant, there is increased risk of:

• miscarriage
• gestational diabetes
• preeclampsia
• premature delivery

I’m so glad I didn’t know that when I was pregnant! I wish I wouldn’t know about it for the next time I get pregnant.

It gets better. So how does PCOS affect a woman’s health?

• You are 50% more likely to have diabetes or pre-diabetes by age 40.
• The risk of heart attack is 4 to 7 times higher than in women without PCOS of the same age
• You are more likely to have high blood pressure.
• You are more likely to have high levels of bad cholesterol and low levels of good cholestorol.
• You are more likely to develop sleep apnea.
• You are more likely to develop endometrial cancer and breast cancer.

Why am I sharing this? Because I think people should know. We are all aware of cancer and diabetes and asthma and a host of other medical ailments.

But somehow infertility is different. It’s something that people just need to relax and get over. It’s something we don’t want to discuss.

If there is one thing I wish I could tell people about infertility, it’s that it is a disease. It’s not something you can “get over.” I can’t cure my PCOS. The same goes for other causes of infertility. I’m not writing this so people can say, “Wow, too bad for her.” I’m writing it so people can say, “Wow, I didn’t realize. Now I do.”

A lot of people avoid talking about infertility or the diseases that cause it. I am not one of those people. Hopefully you aren’t, either.

Sources:
http://womenshealth.gov/publications/our-publications/fact-sheet/polycystic-ovary-syndrome.cfm
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001408/
http://www.pcosfoundation.org/