It's a disease that affects as many as 10 percent of women. It can lead to infertility, diabetes and heart disease.
Yet fewer than half of the women who have it will ever be diagnosed, according to experts' estimates.
It has a cumbersome name - polycystic ovary syndrome, or PCOS - but an avid nonprofit support organization, PCOS Challenge Inc.
To draw attention to what it calls "one of the most critical, underserved, underdiagnosed and underfunded conditions affecting women's health," the group is holding numerous symposiums, the largest of them on April 16 at Thomas Jefferson University.
Katherine Sherif, director of Jefferson Women's Primary Care, a PCOS specialist who is participating in the event, spoke to us recently about the condition.
What is polycystic ovary syndrome?
PCOS is a disorder in which women have irregular periods and high levels of testosterone. And it's recognized as a very common cause of infertility. It's always been considered a reproductive problem. But it's also a metabolic problem. By that, I mean it can cause high blood pressure. It can cause high lipid levels. It can cause diabetes.
PCOS causes a lot of aggravation. When you have really high testosterone levels, you can get severe acne, usually around the jaw. It can also be on the back, the buttocks, the upper arms and the chest - places where girls don't usually get acne. You can get hair on your face or other places where girls don't usually have hair. Thirdly, you can get loss of hair on your head - male pattern baldness.
Another effect is obesity. Women with PCOS have high levels of insulin, which is a growth hormone. These women will eat the same as other women, but they will put on weight and the other women won't. Their bodies save every calorie.
We think PCOS may affect as many as 10 percent of women. If you extrapolate the statistics, that means 75,000 women in the Delaware Valley. Yet 50 percent are undiagnosed.
Why is the diagnosis rate so low?
The reason it is invisible is that women's health care is artificially fragmented. We have a separation between reproductive medicine and nonreproductive medicine. Most doctors look at patients through their particular lens, their specialty, and not at the whole picture.
Women and girls end up seeing different subspecialists for the different problems, which are actually related, but their doctors do not recognize it. They will see the fertility doctor for fertility problems. They will see their primary-care doctor for cholesterol problems.
Let's say you're overweight and you have acne so severe that it's scarring you. Again and again, you go to the dermatologist. You also have irregular periods, and the gynecologist says to put you on the pill and you'll be fine. But no one said, "oh, I wonder if her testosterone levels are high." The gynecologist didn't ask about the acne, and the dermatologist didn't ask about the irregular periods. That's exactly how people get missed.
I started looking for it because I was making the connections. When I see a woman taking Accutane, the strongest medication for acne, my first question is: Does she have a regular period?
One of the saddest things I see is a woman who comes to me in her 40s and she was unable to have children and gave up. She's got Type 2 diabetes and is 50 pounds overweight. Her blood pressure is high, and she doesn't realize it's already affected her kidney function. She has abnormal liver enzymes, and when I bring it to her attention, she'll say, "I know. People say I should stop drinking, but I don't drink." It turns out she has fatty liver that can be traced back to when she started her period - when PCOS could have been diagnosed and potentially spared her this outcome.
Can it be treated?
We can try to reverse the underlying process - avoiding the trajectory of diabetes and early heart disease - by using diabetic medications.
A woman with PCOS has high insulin levels. Put simply, those levels tell the ovaries to make more testosterone. When they make testosterone, the eggs cannot mature, so you can't menstruate. But there's nothing intrinsically wrong with the ovaries.
There are five things patients need to do. No. 1 is to have a healthy diet. That means fewer carbs. Secondly, exercise. When you have bigger muscles, you need less insulin. Thirdly, you need to sleep eight hours, and that is nonnegotiable. No. 4 is medications, as I've mentioned. No. 5 would be supplements, such as Vitamin D, which reverses insulin resistance.
This is the majority of my practice - women with PCOS. Once you start dealing with the testosterone and the insulin, not only do their blood pressures come down and sugars normalize and lipids come down, but they also start to menstruate monthly, and then they get pregnant.
What will patients gain from attending the symposium on April 16?
Patients should go to educate themselves and meet other women with PCOS. It can be very isolating. Losing your hair is probably one of the most distressing symptoms of PCOS because women are very invested in how their hair looks. There's also a lot of fat-shaming that goes on in our society. It's validating to hear other people who have struggled the way that you have.
What is your bottom-line advice for patients?
If you have PCOS, I want you to be hopeful. No matter what age you are, we can help you manage the symptoms. You're not doomed to get diabetes. And it's possible for you to get pregnant.
The PCOS Symposium will be April 16, 9 a.m. to 5 p.m. at Jefferson Alumni Hall, 1020 Locust St. For more information: http://pcoschallenge.org/symposium/philadelphia