Charlotte Touzalin was still a young teenager when she began struggling with weight gain, abnormal periods and unwanted facial hair — the same puzzling symptoms that plagued her mom for decades and that no doctor could piece together.
“I’d go home and I’d cry,” said Touzalin, an 18-year-old college student from Colorado. “I didn’t understand why all this weight was coming back or why my friends didn’t have to shave their faces and I had to.”
Touzalin and her mom, Anne Schultz, were finally diagnosed with polyendocrine metabolic ovarian syndrome, a hormonal condition affecting 1 in 8 women worldwide. But unlike her mom, Touzalin is beginning young adulthood with new hope after taking part in a study testing blockbuster GLP-1 drugs as a treatment.
A small but growing body of research shows that these obesity medications may also work for the disorder known as PMOS — not only by promoting weight loss but also by improving insulin resistance, hormone balance and ovulation. These things are key to the disease, which used to be called polycystic ovary syndrome but was renamed earlier this year to shift the focus away from ovaries and cysts.
“We need to do a better job taking care of it,” said Dr. Melanie Cree, who has led three studies testing GLP-1 drugs for PMOS including the one Touzalin joined. “We are finding them incredibly effective and really exciting for improving symptoms in women with this condition.”
Touzalin and her mom’s long, frustrating journey with PMOS is common.
Diagnosis often takes years because symptoms overlap with other conditions, vary widely and may be dismissed by doctors. The disorder tends to run in families, and many but not all women affected carry excess weight. But there’s no known cause or specific treatment, just symptom management such as taking birth control pills to regulate periods and keeping weight in check with diet and exercise.
Two hormones are key drivers of PMOS: insulin, which acts like a key to let blood sugar into cells, and testosterone, which among other things helps maintain sexual desire, bone density and muscle mass.
Most women with PMOS, regardless of their body size, have insulin resistance, which means this hormone doesn’t work as well as it should, said Cree, PMOS clinic director at Children’s Hospital Colorado. In many women, the high insulin can go directly to the ovaries, spurring them to make more testosterone and leading to problems like skipped periods, severe acne and even beard growth.
Schultz, 43, didn’t even know the condition existed when she first began having irregular periods and bloating around age 18. In addition to struggling with the same symptoms as her daughter, she had problems with her ovaries and numerous miscarriages, which are more common with PMOS.
Schultz received various diagnoses before learning she had PMOS around the same time as her daughter, who faced a similar medical runaround.
Schultz recalled talking about Touzalin’s symptoms with a pediatrician who was seeing her for what they thought was primarily an issue with binge eating and ADHD.
Schultz told the doctor: “There’s gotta be something else going on here.”
Touzalin said she felt “heard for the first time” when a nurse practitioner began piecing things together a few years ago. Cree definitively diagnosed her last year.
“It was like a godsend,” said Schultz, tearing up. “We finally had an answer and some kind of a path for her.”
