My friend “A” was tired of spending an eternity on the treadmill with no results. It’s not like she was one of those at-the-gym-just-to-Instagram types either—she’d just finished a year-long, 60-pound weight loss journey, was training for a half-marathon, and was eating organic non-processed foods. Why was her body resisting the exercise now? And not only that, she was gaining four to five pounds a week. In addition to new weight around her stomach and thighs, she developed severe acne on her jawline and cheeks (an adventure she thought she’d missed out on since she had clear skin as a teen). She felt “hideous, scared, and powerless.” After frustration with her primary care physician piling on medications (she was up to 6), she went to see an endocrinologist who finally gave her a diagnosis: polycystic ovary syndrome.
Polycystic ovary syndrome (PCOS, other names include Stein-Leventhal syndrome) is the most common metabolic disorder for women of reproductive age, affecting as many as 5–20 percent of women. It’s a complex diagnosis and symptoms can vary widely between individuals, with many answers still unknown. Here’s what you need to know:
What is PCOS? What are the symptoms?
PCOS is a syndrome, meaning it is a collection of symptoms, most of which caused by a hormone imbalance. Women with PCOS have more male hormones (like testosterone) than normal, which cause symptoms like excess body hair, acne, and thinning head-hair. They also tend to have excess estrogen, which can lead to irregular periods and your ovaries refusing to release an egg like they’re supposed to do every month. This means PCOS can affect fertility. Many women with PCOS also have insulin resistance (hence A’s difficulty losing weight) and/or are obese, putting them at higher risk of contracting Type II Diabetes. There are different definitions of what constitute PCOS (National Institute of Health and Rotterdam, for example), so someone classified as having PCOS may not have all of these symptoms.
What’s this about cysts now?
Your ovaries develop eggs in little sacs called follicles or cysts (cyst is a general name for fluid-filled sacs in your body). Hormones cause the sacs to grow, and normally, once they are big enough, the sac will burst to release an egg into the Fallopian tubes. Due to the hormone imbalances in PCOS, the eggs don’t develop and remain encased in the sac. These underdeveloped sacs will show up on an ultrasound, which is part of the diagnosis of PCOS and how it got its name.
Wait, so no eggs released = no babies, right?
One of the very unfortunate things about PCOS is its correlation with infertility—PCOS is the culprit behind 70 percent of infertility issues in women with difficulty ovulating. However, having PCOS only means getting pregnant will be more difficult, but it is not impossible. Strangely, it can also result unintended pregnancy because the menstrual cycle becomes so hard to predict. Plus, as A (who, IMHO, will make the best mom ever) says, “It is disappointing to think that it might be difficult to conceive when I’m ready to, but I am excited about the idea of adoption.”
How is PCOS diagnosed?
PCOS can be tricky to diagnose, and going to an endocrinologist may be key. Doctors usually have to look at a variety of signs that point to a diagnosis: Insulin/blood sugar tests, checking hormone levels, and ultrasound are standard procedures.
Is there a cure?
Because PCOS is a syndrome instead of a disease, the only treatment is to manage the symptoms. As A discovered, because there are so many factors playing a role, pinpointing the symptoms you can control can be difficult, and treatment is definitely a discovery process. Most treatment focuses on diet and exercise adjustments to manage weight. This can be accompanied by medication (like Metformin) to balance insulin levels and/or hormone levels, and the birth control pill to manage cycles and alleviate acne (there is also medication for excess hair). In A’s case, she discovered many food allergies at the same time as her PCOS diagnosis, so she had to greatly modify her diet (including cutting out delicious, delicious carbs). She advised against soy or other foods that affect your hormone levels, adding, “you have a hormone and insulin resistance problem… adding to it isn’t a good idea.”
There are some surgical options (ranging from zapping your ovary in an attempt to induce ovulation to a hysterectomy) but they are not very common.
What causes PCOS?
There is some evidence that points to PCOS being genetic, but the cause is unknown.
Where can I go for more information?
The US Department of Health and Human Services, Office on Women’s Health has a very detailed guide on PCOS.
I’m growing hair on my face, I’m gaining weight, and I can’t have kids—I feel gross, alone, and I’m FREAKING OUT!
First of all, you are NOT alone. It’s estimated that 5 million women have PCOS! It’s not a death sentence, and most women can lead relatively normal lives after they learn how to manage their symptoms, especially if they make lifestyle changes early. However, if your panic is getting in the way of your life, be sure to talk to a doctor, as women with PCOS may develop anxiety and depression. For internet support and personal experiences, you may want to explore blogs (PCOS Diva is a good starting point). Please note that the disease manifests itself differently in every woman, and blogs are not individualized medical advice from a knowledgeable doctor.
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