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.”
PMOS is a mysterious and maddening disease
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.”
In Cree’s study, Touzalin gave herself shots of semaglutide weekly for 10 months. The abnormal hair growth slowed and her periods normalized. For the first time, she felt full after eating and stopped gaining weight constantly.
“I became a happier version of myself,” she said. “I felt like a normal person.”
While research on GLP-1s for PMOS continues, insurers put up barriers
Touzalin’s results weren’t unique. Early data from the study, published in June in the journal Fertility and Sterility, said eight of 11 participants completing the trial lost at least 10% of their body weight. The median weight loss among them was about 42 pounds; the median drop in testosterone was 52%. Six women had more periods and four of them went to monthly periods.
In all three of Cree’s studies, women on GLP-1s lost more weight than those in control groups, and levels of testosterone, blood sugar and insulin dropped. While the study involving Touzalin looks at semaglutide shots, the other studies examined semaglutide pills in one and exenatide shots in the other.
Other studies globally have shown similarly positive results. Although the studies are small, some researchers say GLP-1s are already showing promising potential for targeting metabolic issues in PMOS. Others say the evidence remains uncertain, and more studies are underway.
As research continues, more and more doctors are prescribing the drugs “off label” for PMOS and seeing improvements in their patients. But insurance coverage is often a problem because the drugs are not approved to treat the condition.
“I use these medicines a great deal,” said Dr. Rana Malek, an endocrinologist with the University of Maryland Medical System.
Among patients with insulin resistance, she said she usually uses them to help with weight loss.
Doctors stress that results vary. GLP-1s don’t work for everyone and can have side effects, like nausea and constipation. If people stop taking them, weight can return.
Still, they can help a lot of PMOS patients, Malek said, and it’s frustrating that many can’t get them because of insurance issues. Not only are they unapproved for PMOS, some insurers don’t cover them for weight loss.
Touzalin recently ran into this barrier herself. After finishing her study participation, she no longer gets free GLP-1s and had to go off them in June.
Schultz is determined to get her back on them. She’s fighting with her insurer and has a backup plan to get medications through a drug company program. She’d also like to try GLP-1s for her own PMOS, but said her daughter comes first.
Touzalin hopes for a day when any PMOS patient can get the treatment if she needs it.
“It’s something that could help a lot of other people,” she said.
