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PCOS is a common condition for women, but it's often undiagnosed

Image of A certified nurse midwife performs an ultrasound on a patient. Navy Lt. Cmdr. Christine Higgins, a certified nurse midwife at Naval Hospital Jacksonville, performs an ultrasound during a prenatal appointment. (U.S. Navy photo by Jacob Sippel)

Polycystic Ovarian Syndrome is experienced by about one in 10 women.

Yet the condition, known as PCOS, is often undiagnosed and misunderstood.

What is it? How does it affect women? Can it be treated or cured?

The National Institutes of Health describes PCOS as “under-recognized, underdiagnosed, and understudied.”

The current definition for PCOS is having two of the three symptoms of hyperandrogenism, ovarian dysfunction and polycystic ovarian morphology.

Hyperandrogenism, which is the overproduction of a male hormone such as testosterone, can cause excessive and unwanted hair growth, also known as hirsutism.

Ovarian dysfunction can result in no periods, irregular periods, or heavy bleeding.

Polycystic ovarian morphology means there are too many cysts in the ovaries, which can lead to enlarged ovaries.

A typical ovary is “the size of a testicle, while an ovary in a woman with PCOS is the size of a plum,” said Dr. William Catherino, chair of the Research Division, Department of Gynecologic Surgery and Obstetrics, Uniformed Services University of the Health Sciences (USUHS) in Bethesda, Maryland.

Before a diagnosis of PCOS can be made, other causes of hirsutism and irregular or infrequent periods must be ruled out – such as hyperprolactinemia, thyroid disease, Cushing’s syndrome, or an androgen-secreting tumor, Catherino said.

“There are multiple mechanisms of disease in PCOS,” he explained. “PCOS is a diagnosis of exclusion. It can manifest itself in different ways that may make it more difficult to treat until there is a thorough understanding of what is driving the disease.”

For example: “We know that insulin resistance can result in androgen excess and androgen excess can result in insulin resistance,” Catherino said. “For some women, it’s an androgen disorder. For some women, it’s an insulin-resistance disorder. And it’s possible that for some, it’s both, and for others, it is neither.”

Get a Diagnosis

“It is important to get the actual diagnosis,” Catherino said, because women can have hirsutism but not have PCOS, or they can have irregular menses but not PCOS, or have both and still not have PCOS.

“Many women live with the symptoms like irregular periods,” Catherino said. They may use razors or depilatories to take care of the extra, unwanted hair. “Women may use oral contraceptives to control the irregular periods, and when they use methods to control hair growth, it may make the diagnosis more difficult to determine since the symptoms are hidden,” Catherino explained.

“They deal with the symptoms but don’t address the causes. We can help this problem,” he said.

However, he said, there is no cure at present.

A primary care physician or internist could diagnose PCOS if a woman complains of hirsutism or acne, and irregular periods. That might then mean referral to a dermatologist, and to an endocrinologist who specializes in sex hormone disorders, who might prescribe oral contraceptives and provide long-term care.

However, in Catherino’s practice, “the diagnosis occurs around the issue of infertility and also will require long-term follow-up,” he said. That means seeing a gynecologist or reproductive endocrinologist.

If insulin resistance is found, the patient will have to see an endocrinologist for life and maybe also a cardiologist. That is because there is a danger of developing Type 2 diabetes and having the concurrent health issues that arise from Type 2 diabetes, such as heart problems.

Clinical diagnosis is difficult among the youngest military service members and dependents because, as teenagers, acne and menstrual irregularities can be expected more often, Catherino explained.

Other Health Implications

The disorder increases the risk of obesity, and obesity increases problems with the disease. Women tend to develop apple shapes, with fat deposits around the stomach area, which is typically a male pattern for fat deposition.

“Increased obesity can lead to worsening disease that cycles on itself,” said Air Force Lt. Col. Natasha Best, USUHS family nurse practitioner, Women’s Health Nurse Practitioner Program.

Because of this metabolic syndrome, women with PCOS can have disordered sleep, sleep apnea, preeclampsia (dangerously high blood pressure during pregnancy), and miscarriages.

Depression or anxiety also can result from PCOS.

Best said Black and Latina women can have higher diagnosis rates compared to White women.

For military women, PCOS can have an impact on careers and readiness, especially through weight gain, failure to pass an annual physical, or symptoms that cannot be managed easily, Best said.

Ways to Care for PCOS

Military women who are diagnosed with PCOS can have their condition dealt with in a variety of ways that allow them to continue in service.

Depending on the symptoms, providers may suggest that patients reduce their body mass by 10% through a heart-healthy diet, Best said.

Catherino said patients can be put on oral contraceptives for irregular periods or heavy irregular periods or hirsutism and stay on that regimen “until they are ready to have children. Then they would work with their reproductive endocrinologist to achieve a pregnancy and deliver a child,” he said. He also suggested “medication holidays to determine if they still require treatment.”

For insulin resistance, there are diabetes drugs like metformin.

If patients are trying to get pregnant or return to a normal menstrual cycle, metformin may be used. “But what works best is letrozole or clomiphene,” Catherino said. “If medications are used, they should be carefully monitored by a reproductive endocrinologist using an ultrasound.”

If women with PCOS are depressed or anxious, there are psychotherapeutic drugs and counseling for those issues.

Besides drug therapy, other ways to improve PCOS are “watchful waiting (except for the risk of cardiovascular events), sleeping right, exercising and being as healthy as possible,” Best said. Watchful waiting is useful to see if the disease is worsening.

“It’s a lifelong issue,” Catherino said. “When young, affected women are concerned about hair growth and acne – androgenic symptoms – then, later in their lives, they are concerned about difficulties with pregnancy, then about the cardiovascular effects and insulin resistance; it’s very easy to get frustrated and depressed,” he said.

Best said: “We know now that if you look healthy, you can still have PCOS. It’s not as black or white as it has looked in the past.”

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