Tuesday, September 28, 2010

Polycystic Ovary Syndrome (PCOS)

Brace yourself, this is a long one.


Between one in ten and one in 20 women have PCOS. It is the most common cause of female infertility. I happen to have a lot of friends who have it.

I think of it as the "ugly" syndrome.

Common symptoms include:
  • Acne
  • Excessive and uncontrollable weight gain
  • Abnormal and excessive hair growth (in male patterns: on the face, neck, belly, etc.)
  • Irregular periods

I have every symptom except for weight gain.

Typical women ovulate regularly (an average of every 28 days). Women with PCOS may not ovulate at all, and when they do, they tend to get cysts, or fluid-filled sacs, on their ovaries. It hurts. A lot. It often requires surgical removal. I had a cyst literally for my entire pregnancy. The Kid kicked it all of the time.

"The ovaries, where a woman’s eggs are produced, have tiny fluid-filled sacs called follicles or cysts. As the egg grows, the follicle builds up fluid. When the egg matures, the follicle breaks open, the egg is released, and the egg travels through the fallopian tube to the uterus (womb) for fertilization. This is called ovulation.

"In women with PCOS, the ovary doesn't make all of the hormones it needs for an egg to fully mature. The follicles may start to grow and build up fluid but ovulation does not occur. Instead, some follicles may remain as cysts. For these reasons, ovulation does not occur and the hormone progesterone is not made. Without progesterone, a woman's menstrual cycle is irregular or absent. Plus, the ovaries make male hormones, which also prevent ovulation."

Blood tests will show higher levels of male hormones, such as testosterone.

I was diagnosed with PCOS around the age of 18. My doctor prescribed oral contraceptives and spironolactone, a drug typically used to treat high blood pressure. After a few months, every symptom of PCOS disappeared. It was wonderful.

When I got married, I knew that it would take a long time to conceive. Many doctors won't prescribe assistive reproductive medication until a woman is diagnosed with infertility (the inability to conceive after one year of regular intercourse without contraception). Within less than one month of stopping my birth control and spironolactone, I sprouted manly hairs, broke out, and gained almost ten pounds. Lovely.

Since I already had a PCOS diagnosis, after 7.5 months of "trying" I went to a fertility specialist. It's a good thing I did. He agreed to give me clomid, a drug meant to increase ovulation, and metformin, a drug typically used to treat type II diabetes but that has been shown to make clomid more effective. Oddly enough, women with PCOS have a MUCH higher chance of developing type II diabetes. In fact, "more than 50 percent of women with PCOS will have diabetes or pre-diabetes (impaired glucose tolerance) before the age of 40." Once again, lovely.

Clomid works by blocking the estrogen sensors in your brain. When your body doesn't think it's producing enough estrogen, it produces more. Estrogen is the hormone that causes ovulation.

To reduce the chances of ovulating more than one egg and having multiples, doctors start you on the smallest dose of clomid, 50 mg. You take one 50 mg pill per day for five consecutive days some time in the first eight or so days of your cycle (usually days 3-8). There are all sorts of tricks to know exactly when you ovulate, but I won't get into that now.

If you don't ovulate after that first cycle, most doctors will increase your dose by 50 mg. I was on clomid for 9 months. Here is how my cycles went:

50 mg: no ovulation
100 mg: no ovulation
150 mg: ovulation, no pregnancy
150 mg again: no ovulation
200 mg: WIN! Six months later, I'm a momma.

According to my doctor, the "vast majority" of women ovulate with 150 mg or before. I guess my body is really messed up.

Out of curiosity, I called and asked my doctor what would happen when The Boy and I wanted to have another baby (don't freak out--it's still in the distant future). He said that since I needed "high doses" of clomid for my first pregnancy, they would just start me out on high doses next time. It's good to know that it won't take 16 months to get pregnant every time we want to have another baby, but it sure is scary to think that I could have twins. Let's just hope I don't have any more micro-preemies. Ever. Let's shoot for seven-pounders. Although, I'd settle for a four-pounder.

Anyway, if you know anyone who has PCOS, has the symptoms of PCOS, or has been struggling with infertility, direct them to the link at the beginning of this long post (sorry). It can be a rough thing to deal with, but it can be dealt with.


Natalie said...

Our similarities continue to grow ... I was also diagnosed with PCOS. Luckily, though, my cysts don't get painful. I must say don't envy you there.

Maybe, when I finally get to Utah, we can shave our manly hair together and crack jokes about it to make us feel better. I have an awful habit of using the tweezers for hours. GROSS, Natalie :)

The Winkels said...

I also have PCOS (and endometriosis). Thanks for getting word out.

Patrick, Adrienne, & Bella said...

This really does sound poopy. :-/ I have a friend with endometriosis, among other problems. I don't have those, but when we needed "assistance" to get pregnant, I realized a LOT of women have some kind of "problem" getting pregnant. I have something where my brain doesn't tell my body to ovulate, it's unexplained, it's blah blah blah, and it can come and go whenever it wants to - cool, not. I really thought it was a rare thing (fertility probs in general), and that I was broken and a failure. But when I realized there were so many other people with varying degrees of infertility, I felt more comfortable in my misery. (as sick as that sounds) It's so tough to feel like that, and sometimes the lows are very low, but when you have a baby everything changes. This time around we weren't even trying to have a baby - which has also been hard to accept. It's very difficult to be on both sides of the fence, believe it or not. Seems like you should just jump for joy at your ability to conceive, but it's almost easier to be in the struggling category... anyway, i'm just babbling and saying, thanks for the post. It's good information. :) And you're brave. :) thanks!