“For now, the biggest struggle is merely things of inconvenience: hair growth, weight loss, libido. I have yet to find something that curbs the irregular hair growth, other than waxing. However, my doctor has told me that the real struggles will be when I try to conceive. She said that I will have a much harder time than most people because many that have PCOS don’t ovulate properly.”

This struggle isn’t uncommon. In fact, one in 10 women (of childbearing age) is affected by polycystic ovary syndrome, or PCOS. This is the syndrome responsible for the struggles shared above by 27-year-old Sally, who preferred to not use her real name in this article. The struggles aren’t new for her, and they aren’t new for the additional three women who are also sharing their stories with us.

During PCOS, women can develop cysts on their ovaries that have been said to look like a string of pearls.

As it turns out, PCOS has become a conversation topic lately in my friends groups — at the dinner table, at parties, in a corner at a wedding and anywhere else women of childbearing age can be found. In one instance, three of 10 women in our group were commiserating over their PCOS diagnoses. I was shocked that so many women in my life were burdened by a syndrome that I, a woman of childbearing age, had never heard of. I was reminded of the depth of womanhood, so I vowed to investigate, and the women were kind enough to share their stories. We also spoke with medical professionals to get the facts.

“I think, just like me, there are so many women out there who are suffering from these issues but think there’s nothing they can do. Many women — and many of my friends — have never heard of PCOS,” Sally shares. “It’s difficult to tie up all these symptoms into one common problem, and I think many doctors fail to put all the pieces of the puzzle together to help their patients. I think if women are more informed of the general symptoms, they have a better chance to discuss PCOS with their doctors and find some sort of relief.”

What is PCOS?

Before we get to the more intimate details these women so bravely shared, let’s get the facts. Polycystic ovary syndrome is defined by the Mayo Clinic as “a hormonal disorder common among women of reproductive age.”

So, what does that look like? “It is a syndrome where women have elevated levels of androgens (male hormones, like testosterone) and ovulatory dysfunctions,” Dr. Elizabeth Frisse, OB/GYN with TriStar Health, further explains. “Due to the elevated levels of androgens, you see changes in the skin — some women will have acne or unwanted hair on the face or body. In terms of ovulatory dysfunction, the big symptoms are menstrual irregularity (missing periods or having heavy periods). There is no perfect test to diagnose. We start by talking to the patient and gathering their menstrual history, as well as a physical exam.”

For Dr. Sarah Aultman of Brookwood Baptist Health, periods are a vital sign. “Periods tell me about the health of someone,” she explains. “I look for two of three criteria to diagnose: anovulation (periods that don’t come often enough or don’t come at all), evidence of hyperandrogenism, and follicles on the ovaries.” When it comes to follicles on the ovaries, Dr. Aultman looks for multiples (more than 12) that are all less than one centimeter in size. She describes it as a string of pearls around the outside of the ovaries. “The name doesn’t paint the whole picture,” she explains. “Most people get diagnosed without even looking at their ovaries. Even if they don’t have polycystic ovaries, they can be diagnosed with PCOS.”

How does PCOS affect fertility?

Conversations about PCOS among those of childbearing age are common because the syndrome largely affects fertility. “If you are not having regular periods, you are not ovulating regularly, which means you are not dropping an egg regularly,” Dr. Aultman explains. “Ovulation can be induced with metformin or letrozole (which is a newer approach). By increasing estrogen levels, you can mature more than one follicle, which can result in multiple gestations (twins, triplets, etc.). The treatment begins with ovulation induction medicine, which induces your period with a progesterone cycle of three to nine days. An ovulation predictor kit lets you know 12 to 36 hours before you ovulate so you can have intercourse.” After three months, if the patient is not pregnant, Dr. Aultman will send them to a fertility doctor — but that is rare.

“A lot of women associate fertility treatments with high costs and injections,” Dr. Frisse says. “The first line of treatments comes at pretty reasonable rates and is accessible to most patients.”

How is PCOS treated?

Women who are not trying to immediately get pregnant are most commonly treated with birth control. Estrogen and progesterone birth control pills regulate the bleeding and shedding of the uterine lining and bind up free testosterone. Spironolactone is another way to treat the symptoms by lowering the level of androgens. Dr. Frisse also credits lifestyle changes in helping alleviate symptoms. “About 80% of women with PCOS are obese,” Dr. Frisse tells us. “Leading a healthy lifestyle and weight changes even as small as 5% can reduce your overall risk.”

Dr. Aultman echoes the importance of overall health. “It is really about controlling your weight and controlling the amount of sugar in your blood,” she says. “But that is something I would say to all women. I recommend one serving of carbs per meal, and the Centers for Disease Control & Prevention recommends two-and-a-half hours of aerobic exercise per week.”

“I would recommend all women, age 21 and older, see an OB/GYN once a year for a routine well-woman exam,” Dr. Frisse stresses. “Women need to know it is okay to talk about their problems and that they have someone they can turn to for treatment options.”

And thankfully, Dr. Aultman assures us, PCOS is treatable.

Thank you to the doctors of TriStar Health and Brookwood Baptist Health for sharing your expertise.

To hear from real women about their struggles with PCOS and how the cope, click HERE.

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