When Caitlin Scannell, 29, stopped taking birth control and didn’t get a period for about nine months, her obstetrician-gynecologist didn’t think anything of it and put her back on hormonal contraceptives.
When she was 18, before starting hormonal contraceptives, she had a regular menstrual cycle. It wasn’t until she was about 25, studying to become a physician’s assistant and learning about metabolic disorders and polycystic ovary syndrome, often called PCOS, that “it started to add up.”
Although it affects about 5 million women in the United States and is one of the most common causes of infertility, PCOS is still a puzzle to doctors and its name is misleading.
“[I had] some of the [PCOS] symptoms, like getting little black hairs on your face, those that you hate to find. And I thought ‘I think I could have had that.’ I stopped birth control once again and said ‘if I don’t get my period I’m going to go back on to the doctor,’” she said.
Ms. Scannell was eventually diagnosed with PCOS. Her testosterone levels were excessively high, and an ultrasound showed her ovaries had multiple follicles. Her doctor explained that it was a hormonal and metabolic disorder.
To manage the symptoms and related health risks, Ms. Scannell of Toledo takes birth control and follows workout and diet regimens that keeps her waistline in check, something many women with PCOS find diffcult. Symptoms also include irregular menstrual cycles, infertility, and excessive hair growth on the face and body.
Doctors suggest a healthy lifestyle to manage the disorder that has no cure and a collection of cosmetic complications and health risks.
“The way I explain it to our patients is, it is a hormonal imbalance, most commonly associated with missed periods, skipping periods, or irregular cycles, and there is a prediabetes component because of insulin resistance,” said Dr. Jackie Vannuyen of ProMedica Physicians Obstetrics Gynecology Puckett & Vannuyen, Ms. Scannell’s doctor. “It can predispose them to diabetes, especially since diabetes is related to weight gain later in life.”
In 2013, the Endocrine Society published guidelines to treat polycystic ovary syndrome, stating “The condition causes diverse symptoms, and its causes are poorly understood. The definition and even the name of PCOS have been subject to debate.”
Diagnosing PCOS requires the presence of two of the following three criteria: Androgen (testosterone) excess, irregular or absence of menstrual periods, or evidence of cystic ovaries on an ultrasound. A diagnosis can be made without having polycystic ovaries.
Dr. David Ehrmann, who cowrote the guidelines, is an endocrinologist who specializes in the diagnosis and treatment of PCOS.
He explained that increased testosterone levels have three common symptoms: acne, excessive body hair growth, and male pattern balding.
“The other issue is that it is not just a reproductive disorder. It is also a metabolic disorder,” said Dr. Ehrmann, who is associate director of the University of Chicago’s Clinical Research Center.
“The key finding is the women tend to have insulin resistance,” he said. “Insulin is less effective than it should be in driving glucose into the cells. That is not necessarily a problem with the insulin. It is a problem with the way glucose is metabolized by the cell. Or the way insulin acts on the cell to metabolize glucose.
“For instance, women who are overweight, or anybody who is overweight is insulin resistant to some degree. Obesity or being overweight itself is a cause of insulin resistance. But most of these women [with PCOS] seem to be insulin resistant to a degree that is disproportionate to their body weight.”
The vast majority of women with PCOS are overweight or obese. But there are some with a normal body weight, he said. “Women with PCOS who have normal body weight can also have high insulin levels that are higher than one would predict for their body weight.”
Like diabetes, researchers have yet to find a cure — or even a root cause — of PCOS.
The combination of being overweight or obese and having PCOS can be a double-edged sword for women. Losing weight or maintaining a healthy weight and lifestyle can improve the “manifestations of this syndrome.”
For overweight women with PCOS, the first line of therapy is weight loss through dietary intervention and lifestyle management or exercise, the physician said.
“Increased body weight makes the metabolic abnormalities of PCOS worse,” Dr. Ehrmann said. “Not only do insulin levels go up, but the testosterone levels tend to be high too. So weight loss improves [things]; it doesn’t necessarily resolve or normalize the hormonal abnormalities, but it will improve a lot of what’s abnormal if a person is overweight or obese.”
Excess weight is also a risk factor for endometrial dysplasia or endometrial cancer, a type of uterine cancer.
Maintaining a healthy body weight for PCOS patients reduces the diabetes risk, reduces testosterone, and can help in regulation of menstrual cycles.
Ms. Scannell found that what works best for her is avoiding processed foods 90 to 95 percent of the time and following a workout routine that combines resistance training and cardiovascular exercise.
“I don’t eat perfect, but I try to eat protein, fruit, vegetables, and healthy carbs. I do a day or two a week to allow for wheat or a glass of wine, but I keep it in moderation,” she said. “I stay away from refined or processed carbohydrates.”
When she knows she’ll be in a situation where tempting foods abound, she brings her own dish.
“A few weeks ago, I went to party and picked up a salad with salmon, because it was all burgers, corn, and buns. Or if someone asks me to bring something, I’m the one bringing a fruit tray and hummus. If I bring my own food somewhere to eat, I just say ‘Oh, my body doesn’t do well with carbs.’ Or you could say you have a sensitive stomach. You don’t want to offend your hosts,” she said.
“Eating as if you are diabetic is a good rule of thumb,” Dr. Vannuyen said. She recommended exercising at least five times a week for at least 45 minutes.
She suggested employing interval training [different types of exercises] because your body will get used to whatever you do.
Dr. Ehrmann said that what you eat is as important, if not more so, than working out. He said women with PCOS should be mindful of the little bites that “sneak into the diet that no one thinks about. And it could even be fruit. It’s not always pieces of candy.”
Studies have shown that dietary recall is faulty. “People tend not to recall exactly what they have eaten and they misjudge portions,” he said.
Using a calorie-counting application, such as MyFitnessPal, or food diary could help with patients realizing the food and calories they are consuming, Dr. Vannuyen said.
Dr. Ehrmann said the best way to lose weight is to employ a program that is sustainable, adding that long-term severe carbohydrate restriction is difficult.
He said balance is key, and working with your doctor to find a common sense diet that works for you. He also advised against weighing yourself everyday because body weight can fluctuate for numerous reasons.
“What they need to do is develop a plan with a trainer or dietitian — a livable plan where they expect to lose about a pound every two weeks. That’s 26 pounds over the course of the year. So if they lose a pound or two every month over the year, they should be able to do that without making enormous sacrifice.
”One pound is 3,500 calories, any way you look at it. So if somebody cut their diet by 500 calories per day, in seven days they would lose one pound,” he said.
Contact Natalie Trusso Cafarello at: 419-724-6133, or ntrusso@theblade.com, or on Twitter @natalietrusso.
First Published August 31, 2015, 4:00 a.m.
