Exploring GLP-1 Drugs for Polyendocrine Metabolic Ovarian Syndrome

Charlotte Touzalin experienced weight gain, irregular periods, and unwanted facial hair from a young age. These symptoms mirrored what her mother, Anne Schultz, faced for years without a proper diagnosis. Touzalin, now 18, expressed her struggle, “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.” Both eventually received a diagnosis of polyendocrine metabolic ovarian syndrome (PMOS), a condition affecting 1 in 8 women worldwide.

Unlike her mother, Touzalin found hope in a study testing GLP-1 drugs as a potential treatment. Research indicates these drugs, known for addressing obesity, may also help alleviate PMOS by promoting weight loss, improving insulin resistance, and balancing hormones. These elements are central to PMOS, initially called polycystic ovary syndrome before a recent name change to shift the focus from ovaries and cysts.

“We need to do a better job taking care of it,” said Dr. Melanie Cree, a leader in studies on GLP-1 drugs for PMOS, including the one Touzalin participated in.

PMOS remains a challenging and frustrating disease. Many face a lengthy path to diagnosis due to overlapping symptoms with other conditions, variability, and possible dismissal by doctors. The condition often runs in families and not all women affected are overweight. Treatment focuses on managing symptoms through lifestyle changes and medications like birth control pills.

PMOS involves two crucial hormones: insulin, essential for blood sugar regulation, and testosterone, which influences sexual desire, bone density, and muscle mass. Most women with PMOS experience insulin resistance, leading to high insulin levels that stimulate the ovaries to produce more testosterone, causing issues like skipped periods and beard growth.

Schultz faced similar struggles, including irregular periods and miscarriages, without awareness of PMOS. After various misdiagnoses, both she and Touzalin eventually received a correct diagnosis. Touzalin recounted feeling understood when a nurse practitioner connected her symptoms with PMOS.

“It was like a godsend. We finally had an answer and some kind of a path for her,” Schultz shared, emotionally.

In the study led by Cree, Touzalin self-administered semaglutide injections weekly for 10 months. She observed a decline in abnormal hair growth and normalization of her periods. Additionally, she achieved a sense of satiety after meals and halted her continuous weight gain.

Early data from the study published in the journal Fertility and Sterility showed significant improvements. Of 11 participants, 8 lost at least 10% of body weight with a median weight loss of 42 pounds. Testosterone levels dropped by 52%, and several women experienced more regular periods. Similar results in other studies with GLP-1s highlighted their potential for addressing metabolic issues in PMOS, although further research is needed.

While some doctors prescribe GLP-1 drugs “off label” for PMOS, insurance barriers persist as they are not officially approved for this purpose. Dr. Rana Malek noted these medications are effective for many patients, but insurance coverage often limits accessibility.

Touzalin encountered this challenge as her access to free GLP-1s ended after her study participation. Schultz is persisting with insurance companies to secure the medication, even seeking alternative programs to ensure her daughter’s well-being.

Touzalin hopes for broader access to these treatments, believing they could benefit many PMOS patients. “It’s something that could help a lot of other people,” she stated.

AP video journalist Brittany Peterson in Denver contributed to this story.
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