PCOS: This woman was told to lose weight by doctors - but something else was going on

To Deborah E. Savage, a trip to the doctor was frequently an exercise in humiliation.

For more than 15 years, Savage's doctors doled out the same advice: You need to stop gaining weight. When Savage replied that she had tried watching her diet and exercising, only to pack on more pounds, it was clear they simply didn't believe her. Her family was equally skeptical.

"I would eat like my sister, and I would gain weight but she wouldn't," recalled Savage, a civil engineer who lives in Montgomery County and turns 31 next month.

Savage's inexorable weight gain, which began in middle school and resulted in obesity, was not her only problem: For years, she also struggled with eruptions of painful acne and facial hair. "These things made me feel ugly," she said.

Last year, after Savage had trouble getting pregnant, an inability she suspected was linked to her irregular periods, she consulted a new obstetrician/gynecologist. The doctor suggested that Savage's constellation of problems might have a single cause. But it took a second OB/GYN to conduct the proper tests, which led to a definitive diagnosis of a common -- and consequential -- disorder.

"It's frustrating to me that so many doctors" didn't think of this, she said. "If I'd known, I would have made changes years ago."

From the time she was 12, Savage recalled, her inability to lose weight became one of the defining elements of her life. And because she is short -- 5-foot-3 -- extra pounds were particularly noticeable. Her family's comparisons with her older, thinner sister rankled.

At her mother's suggestion, Savage joined a gym, but that didn't help her lose more than a few pounds.

Savage said she was too intimidated to ask her doctors why her weight didn't budge much, even when she faithfully followed a diet and worked out.

Nor did she mention the other problems that plagued her. "The facial hair thing was embarrassing, so I didn't want to talk about it," she recalled. "Same with the acne. I felt so sensitive about it."

Savage wasn't sure what to make of her irregular menstrual periods, but doctors did not seem concerned. At times she went three months without a period; at other times they lasted for two weeks. She managed to lose a little weight in college, but her acne and other problems persisted.

In her early 20s, Savage said, her gynecologist chided her about how heavy she was; every year, she seemed to gain 10 pounds. "I explained that I had tried diet and exercise, but he said I was not trying hard enough," Savage recalled.

To regulate her menstrual cycle and tame her acne, the doctor prescribed oral contraceptives, which helped clear her skin and made her periods somewhat less irregular.

When she got married in 2010, Savage and her husband joined a popular weight-loss program to see whether they could motivate each other.

Savage said she lost only about eight pounds after several months, while her husband, who followed the same diet, had no trouble shedding much more weight.

"It was very frustrating," she recalled. "I was serious about following the rules, but it didn't pay off. I kind of gave up."

By early 2015, she was desperate. She had stopped taking the pill nearly a year earlier, in hopes of getting pregnant; without it, her acne had roared back and her facial-hair problem had worsened. Savage was at her heaviest weight -- about 240 pounds -- and her family doctor warned that her cholesterol, at 210 mg/dL, was too high.

In March, she switched gynecologists. Her new doctor zeroed in on her irregular periods and her weight and asked Savage whether she had heard of a metabolic disorder called polycystic ovarian (or ovary) syndrome.

Savage replied that a friend in college had been diagnosed with PCOS. She was surprised when the doctor responded that she suspected Savage might have it, too.

An explanation at last

PCOS is a common hormonal imbalance that often begins in puberty and affects as many as 10 percent of women. Its cause is unknown, but heredity appears to play a role: Women whose mothers or sisters have the disorder are at higher risk. Many women with PCOS have enlarged ovaries containing fluid-filled cysts that produce excess androgens -- male sex hormones, which interfere with ovulation. Other signs of PCOS include irregular, absent or prolonged periods, acne and excess facial and body hair, a condition known as hirsutism.

Because it also disrupts the regulation of insulin, many women with PCOS are overweight or obese. The disorder, which can be controlled but not cured, also increases the risk of Type 2 diabetes, high blood pressure and heart attack.

The gynecologist told Savage that she also suffered from PCOS. When Savage asked whether it was possible to test for the disorder, she said that the gynecologist told her, erroneously, that there were no tests. The best way to treat the problem was to lose weight, the doctor advised. And, the gynecologist added, she held weight-loss seminars in her office and urged Savage to sign up.

Savage declined. Two weeks later, she consulted a third OB/GYN, Neil Horlick, who practices in Montgomery and Frederick counties.

Horlick, after taking her history and performing an exam, said he suspected she had PCOS. When Savage told him she had been told there was no test for it, he assured her that testing was available and that he would order it.

Because abnormalities of the thyroid or adrenal glands can cause similar symptoms, those must be ruled out first. PCOS is essentially a diagnosis of exclusion, made on the basis of blood tests, a patient's symptoms and an ultrasound of the ovaries.

"We generally look for two out of three criteria for PCOS," Horlick said. These include a history of irregular or absent periods, elevated levels of male hormones, particularly testosterone, and the presence of ovarian cysts. In Savage's case, an ultrasound showed no cysts, but she did have an elevated testosterone level.

Horlick said he was surprised that Savage's condition went undiagnosed for so long. "PCOS is always on our radar" when a patient with irregular periods complains of weight gain and hirsutism, Horlick said.

He told Savage that her best chance of getting pregnant involved losing weight. Horlick prescribed metformin, a diabetes drug that can promote weight loss. Metformin is commonly given to PCOS patients and may help promote ovulation as well.

Savage decided to take a new approach to food. She began following a paleo diet, which emphasizes meat, vegetables, nuts and fruit, and drastically reduces the intake of carbohydrates, sugar and processed foods.

The first month, she said, she was elated to discover that she had lost 15 pounds; between April and September, she shed 50 pounds and her cholesterol dropped 20 points. Her acne also improved, her level of testosterone dropped, and her menstrual cycle became more regular.

Savage said she asked relatives whether anyone else had been diagnosed with PCOS. "My parents had never heard of it," she said.

In October 2015, she and her husband were elated to learn that she was pregnant with identical twin boys. Savage spent six weeks hospitalized at Maryland's Shady Grove Medical Center under close observation, because her twins have a rare condition in which they share a single amniotic sac and placenta, a condition unrelated to PCOS. The babies were born April 22.

Savage said she hopes that her experience will spare other women from "struggling for years the way I did."

"This isn't a bizarre disorder," she said. "It shouldn't take [this many] doctors to find out, when I have a textbook case."

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