Charlotte Touzalin was a young teenager when she began experiencing unexplained weight gain, irregular menstrual cycles, and unwanted facial hair—the same baffling health issues that had plagued her mother for decades without a medical explanation
“I’d go home and I’d cry,” said Touzalin, now an 18-year-old college student living in 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 mother, Anne Schultz, were eventually diagnosed with polyendocrine metabolic ovarian syndrome, a hormonal condition that affects 1 in 8 women worldwide. However, unlike her mother, Touzalin is entering young adulthood with renewed hope after participating in a clinical trial evaluating blockbuster GLP-1 medications as a treatment
An expanding body of research indicates that these anti-obesity drugs may also work for the disorder known as PMOS—not only by encouraging weight loss, but also by improving insulin resistance, hormone balance, and ovulation. These factors are central to the condition, which was renamed from polycystic ovary syndrome earlier this year to move 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 trial 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
Navigating PMOS can be a frustrating and mysterious journey for patients. Diagnosis frequently takes years because symptoms vary significantly, overlap with other medical conditions, and are sometimes dismissed by doctors
Although the hereditary condition often correlates with excess weight, it does not affect all women the same way. Currently, there is no single known cause or curative therapy, leaving patients to manage symptoms through lifestyle modifications and oral contraceptive pills to regulate periods
Two primary hormones drive the condition: insulin, which enables blood sugar to enter cells, and testosterone, which contributes to bone density, muscle mass, and sexual drive
Most women living with PMOS experience insulin resistance regardless of body size who serves as the PMOS clinic director at Children’s Hospital Colorado. When insulin levels remain high, the excess hormone can go directly to the ovaries, triggering them to produce excess testosterone. This imbalance frequently leads to severe acne, missed periods, and unwanted facial hair
Schultz, 43, was completely unaware of the condition when her own irregular periods and abdominal bloating first started around age 18. Along with enduring the same difficulties as her daughter, she faced ovarian complications and multiple miscarriages, which occur more frequently in women with PMOS
After receiving various mismatched diagnoses, Schultz finally learned she had PMOS around the same time her daughter endured a similarly drawn-out medical runaround
Schultz recalled discussing Touzalin’s symptoms with a pediatrician who was evaluating her daughter primarily for binge eating and ADHD
Schultz remembered telling the doctor: “There’s gotta be something else going on here.”
Touzalin noted that she felt “heard for the first time” when a nurse practitioner began connecting the pieces a few years ago. Cree formally diagnosed her last year
“It was like a godsend,” Schultz said through tears. “We finally had an answer and some kind of a path for her.”
In Cree’s trial, Touzalin administered weekly semaglutide injections over a 10-month period. Her abnormal hair growth slowed, her periods normalized, and for the first time, she felt full after eating and stopped gaining weight continuously
“I became a happier version of myself,” she said. “I felt like a normal person.”
As research on GLP-1s for PMOS continues, insurers put up barriers
Touzalin’s results reflected broader trial outcomes. Early clinical data published in June in the journal Fertility and Sterility revealed that eight out of 11 participants completing the trial lost at least 10 percent of their body weight. The median weight loss was about 42 pounds, accompanied by a 52 percent median drop in testosterone. Six women experienced more frequent periods, with four returning to monthly cycles
Across all three of Cree’s clinical investigations, women taking GLP-1 medications lost more weight than control groups, while showing marked drops in testosterone, blood sugar, and insulin levels. While Touzalin’s trial evaluated weekly semaglutide shots, Cree’s other studies examined oral semaglutide pills and exenatide injections
International research has demonstrated similarly positive outcomes. Although study sizes remain small, some experts believe GLP-1 drugs show promising potential for addressing metabolic dysfunction in PMOS. Others argue that current evidence remains uncertain, noting that further trials are currently underway
As research continues, a growing number of doctors are prescribing GLP-1 drugs off-label for PMOS and observing improvements in their patients. However, obtaining insurance coverage remains a widespread obstacle because the medications 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 suffering from insulin resistance, Malek noted that she typically uses the drugs to assist with weight loss
Medical professionals stress that individual results vary. GLP-1 medications do not work for everyone and can cause side effects such as nausea and constipation. Furthermore, patients often regain weight if they discontinue treatment
Still, the drugs offer substantial relief for many PMOS patients, making it frustrating when insurance denials block access, Malek noted. Beyond the lack of approval for PMOS, several insurers refuse coverage for weight loss treatments altogether
Touzalin recently encountered this barrier firsthand. Upon concluding her participation in the study, she no longer received free medication and had to stop taking GLP-1s in June
Schultz remains determined to get her daughter back on the medication. She is fighting her insurance provider while pursuing a backup plan to obtain the drug through a manufacturer assistance program. Although Schultz would like to try GLP-1s for her own PMOS symptoms, she noted that her daughter comes first
Touzalin hopes for a future where any PMOS patient can access the medication when needed
“It’s something that could help a lot of other people,” she said
