Doctors team up to help girls take control of PCOS

When you’re 17, the last thing you want is a diagnosis like polycystic ovary syndrome (PCOS). Julie Rogers was busy swimming on her high school team and, to make money for her choir’s trip to Italy, scanning groceries in a supermarket. She wanted to feel good about herself, but acne, facial hair and extra weight—all PCOS symptoms—left her self-conscious.

“I was frustrated,” says Rogers, who asked that her real name not be used. “My friends didn’t have any of this stuff.”

She finally made an appointment at the Yale Adolescent PCOS Program, which takes a multidisciplinary approach to managing the most common hormonal disorder in women of childbearing age—a condition that puts them at greater risk for high cholesterol, diabetes, high blood pressure, stroke, endometrial hyperplasia and infertility as they age.

Getting PCOS diagnosed and treated turned out to be a relief, Rogers says. “They’ve had a lot of patients like me, and they knew exactly what they were talking about.”

Is it a symptom or is it normal?

PCOS affects between one in 10 and one in 20 females in the United States. The disease is characterized by irregular or absent menstrual periods; high levels of androgens (male hormones); and enlarged ovaries and multiple small cysts on the ovaries. While it was once thought of as an adult problem, there is growing awareness that PCOS can also affect adolescent girls.

“Diagnosing PCOS in adolescents is challenging,” says pediatric endocrinologist Tania S. Burgert, MD, director of the Yale Adolescent PCOS Center. “There is significant overlap with common pubertal changes such as acne, rapid weight gain and irregular periods, making it sometimes difficult to tease PCOS symptoms and normal changes apart.” Making a proper diagnosis and developing a cohesive treatment plan is important, because PCOS that is not treated can cause “a self-perpetuating, vicious cycle of insulin resistance, higher androgens and weight gain,” she says.

Diagnosing as early as possible

Burgert and reproductive endocrinologist Beth W. Rackow, MD, approach PCOS as a team. “Dr. Burgert and I think about PCOS similarly, and we find that there are tremendous benefits in diagnosing these girls when they’re young," says Rackow. “This is a chronic condition that we can’t fix, but we know a tremendous amount about how to improve the quality of life for women of all ages who have PCOS.”

Rackow also works in the Yale Program for PCOS at the Reproductive Endocrinology practice, an adult program where some patients who start out in the adolescent program continue their care with her.

In the adolescent clinic, Drs. Burgert and Rackow, a nurse practitioner, a nutritionist and a radiologist with expertise in ultrasound evaluate new patients who may be as young as 11. The first visit includes:

  • An extensive personal and family history and complete physical examination
  • A consult with both endocrinology and adolescent gynecology
  • Nutrition evaluation and PCOS-specific counseling
  • Diagnostic imaging in the form of ultrasound
  • Metabolic testing in the form of an oral glucose tolerance test
  • Measures of hormone levels and cardiovascular risk factors

Hormonal changes can lead to anxiety and depression in PCOS patients, and the adolescent program plans to add a psychologist in the future to screen and treat patients who need it.

Treatment depends on the patient

“We used to be more reluctant with the pediatric age group, but now realize that if you don’t treat PCOS, you open the door to other risks,” says Burgert. “In many cases we decide on the same treatments as prescribed for adult women.”

Burgert frequently prescribes metformin, which treats the underlying insulin resistance found in many PCOS patients. For some patients, Rackow adds birth control pills, which can ease heavy or painful periods and provide the added benefit of clearing up acne and reversing excess hair growth. In certain cases patients are given anti-androgen treatments such as spironolactone or finasteride.

A multidisciplinary evaluation helps with diagnosing diabetes or pre-diabetes. “We’ve seen many PCOS patients with glucose abnormalities who we probably wouldn’t have tested in a routine clinic visit, mainly because they weren’t very overweight and didn’t have any other risk factors,” Burgert says.

Lifestyle changes are empowering

While there is a genetic predisposition to PCOS, Burgert and Rackow believe that extra weight, sedentary lifestyles and refined carbohydrates are contributing to a rise in pediatric cases. For that reason, patients participate in creating a symptom-management plan tailored to their age and overall development that may include diet and exercise, medications and a follow-up appointment. A nutritionist is on staff to provide dietary advice at the consultation and later by phone.

“Girls think starving themselves and skipping meals are effective ways to lose weight when these habits are really counterproductive,” Rackow says.”Our goal is to give them the building blocks to truly improve their nutrition and eating habits. Diet, exercise and weight loss really do make a big difference in PCOS.”

To contact the Yale Adolescent PCOS Program, please call 203-764-9199.

This article was submitted by Mark Santore on January 22, 2014.