Not many people have heard of this disease, but it affects about one in 10 women. I was diagnosed with this disease about 8 years ago. My mother was reading an article in a magazine about PCOS and she suggested that I read it too. As I read the article, I realized that I had many of the symptoms of this disease. I went to my OBGYN to get tested. She ran a few tests and sent me to an endocrinologist for further testing. The endocrinologist diagnosed me with PCOS.
When people ask me why I don't have children yet, I tell them it is because I have PCOS. The usual response is "What is that?" It is amazing to me that this disease is so widespread but you never hear anything about it in the media.
PCOS is the leading cause of infertility in women. Since the media and medical community have been so neglectful of informing the public about this disease, I thought I would tell you about it myself. PCOS is a disease that causes a woman's hormones to be severly imbalanced. The hormone inbalance can cause any (or all) of the following symptoms:
* Few or no menstrual periods.
* Women with PCOS often do not ovulate.
* Heavy, irregular periods.
* Hair loss from the scalp and hair growth on the face, chest, back, stomach, thumbs, or toes. (PCOS causes high androgen levels which causes the hair loss on your head and hair growth in places you don't want it to grow. So you are hairy everywhere but your head. What a great look for a woman!)
* Acne and oily skin (and let me tell you, it is such a treat [she says sarcastically] to have skin like a 15-year old when you are 30).
* Infertility (and of course the guilt that goes along with infertility when you realize that you can't give your husband the children he so desperately wants).
* Weight gain and the inability to lose weight (I have struggled to lose weight for many years without much success).
* Repeat miscarriages (if you are fortunate enough to get pregnant. I have had one miscarriage myself and I have never gotten pregnant again.)
* Insulin resistance (pre-diabetes and Type II diabetes) which can also cause skin tags or patches of dark skin.
* Sleep apnea.
* Chronic pelvic pain (caused by cysts that sometimes grow on the ovaries - hence the name of the disease).
* Exhaustion or lack of mental alertness.
* Decreased sex drive.
* High cholesterol.
* High blood pressure.
* Depression and mood swings (and really, who wouldn't get depressed fighting all of these symptoms?).
PCOS is often misdiagnosed as some other disease. That is because there is no definitive test for this disease. Most of the time it is diagnosed by process of elimination. When I went to be tested for this disease, the OBGYN took 2 vials of blood for tests, then she sent me to the endocrinologist. The endocrinologist took 12 vials of blood for testing. Sometimes they even do a pelvic ultrasound to look at your ovaries.
There is no cure for this disease. There also really isn't much treatment for this disease either. The only thing doctors typically prescribe is a healthy diet, exercise, and Metformin to help with the insulin resistance.
My husband and I have been trying to have children since 2000 with no luck. I'm not giving up hope, but I have to be realistic. It isn't likely to happen for me, especially since I'm over 30 now (soon to be 34). My husband and I are going to be looking into adoption soon.
My reason for writing this post is so that when you hear a woman say she has PCOS, you will be informed enough to know that she is dealing with a difficult disease. Perhaps you can give her support and encouragement. You may also know women who suffer from some of the symptoms listed above. Tell her about PCOS so she can discuss it with her doctor (because most likely her doctor has never mentioned it to her).
Please join me in signing this petition to make sure that women are educated about PCOS and those women who have PCOS receive the proper healthcare and medications they need.