Randa Herman of Marion, Ill., always knew something was wrong. Her menstrual period came late and wasn’t regular. She had extra hair growth where there wasn’t supposed to be any, and acne after adolescence.
Eventually, Herman discovered her troubles were caused by Polycystic Ovarian Syndrome and found her way to Dr. Valerie Ratts' office at Washington University’s School of Medicine.
She changed her lifestyle to account for the syndrome, lost 33 pounds, and started medication; but PCOS is still causing her even more trouble. Herman, 25, wants to have a child but, like many women with PCOS, she’s having trouble conceiving.
“It’s very difficult to explain to people what exactly is going on … just losing the weight and trying everything possible to have a baby is basically where we’re at. Just trying to move forward,” said Herman.
Herman’s experience is similar to that of many women. About 4 to 10 percent of women in the United States have PCOS. Many women do not know they have it, however, because its symptoms manifest themselves differently from case to case and many of the symptoms don’t cause a doctor’s visit.
What is Polycystic Ovarian Syndrome?
PCOS is a syndrome that affects reproductive-age women. It can appear in adolescence and will continue to be a factor until the woman reaches pre-menopause. It is characterized by irregular menstrual periods and elevated androgen levels (symptoms that can include acne, oily-skin, extra hair-growth, and male-pattern baldness). PCOS often causes increased weight-gain and makes it difficult to lose weight.
The syndrome affects women far beyond the cosmetic symptoms. It can have profound effects on a woman's overall health, including increasing her risk of developing endometrial cancer, diabetes, heart disease, hypertension and elevated cholesterol levels. It is much harder for women with PCOS to become pregnant and, once pregnant, women have a higher risk of gestational diabetes and preeclampsia.
“When we’re young we can tolerate different bullets. Different bullets in our diet, lifestyle, and things like that. As we get older, those things become much more difficult to tolerate. Those are accelerated in PCOS so metabolic bullets – bad diets, exercise etc. can harm us more,” said Dr. Emily Jungheim of Washington University's School of Medicine.
Managing PCOS
Washington University is opening a clinic in the fall to help women who are not currently trying to conceive manage their PCOS. The clinic will help women with diet and lifestyle, medications, and if appropriate, planning for pregnancy. It will also continue research looking into what causes the condition, reversing the weight-gain, dealing with insulin resistance and more.
“The way we treat PCOS depends on what the goal is for that individual patient,” said Ratts. Patients who are most concerned by the irregular periods would require different treatments than patients more concerned with overall health or patients who want to become pregnant.
Depending on the goal, there are a number of ways to treat the syndrome. “Bringing the weight into a more normal range can ameliorate some of the symptoms that are there,” said Ratts. Though a healthy lifestyle and normal weight can help, there is more to managing PCOS. There are also a number of medications currently used and more in development. If the patient is trying to conceive, in vitro fertilization is often necessary.
It is unclear what causes PCOS, but there may be a genetic link. Oftentimes doctors will see it run in families and, while the syndrome is something that manifests itself solely in women, male siblings have shown signs of metabolic syndromes and abnormalities, high blood pressure, and cardiovascular issues.
“Knowledge of [PCOS] is incredibly important to know, and there are many therapies … I think it is important to talk to your OB-GYN about symptoms and get the right information, as there are many treatment options,” said Ratts.
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