Charlotte Touzalin experienced weight gain, irregular periods, and facial hair as a teenager. These symptoms were similar to those her mother faced without any clear diagnosis for years. Touzalin, now 18 and a college student in Colorado, shared her frustration: ‘I’d go home and I’d cry. 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 (PMOS), a hormonal disorder impacting 1 in 8 women worldwide. Unlike her mother, Touzalin is entering adulthood with optimism after joining a study on GLP-1 drugs for treating PMOS.
Research indicates these obesity drugs may assist beyond weight loss, improving insulin resistance, hormone balance, and ovulation. Formerly referred to as polycystic ovary syndrome, PMOS gained a new name this year to focus away from ovaries and cysts.
‘We need to do a better job taking care of it,’ said Dr. Melanie Cree, who led three studies on GLP-1 drugs for PMOS.
PMOS, characterized by symptoms overlapping with other conditions, often leads to delayed diagnosis. It runs in families, and affected women may have excess weight but no definite cause or treatment. Management usually involves regulating periods with birth control and maintaining weight through diet and exercise.
Insulin and testosterone are critical in PMOS. Insulin helps sugar enter cells, while testosterone maintains sexual desire, bone density, and muscle mass. Women with PMOS often exhibit insulin resistance, causing high insulin to boost ovarian testosterone, leading to irregular periods, severe acne, and even beard growth.
Schultz was unaware of PMOS when she had irregular periods and bloating at 18, similar to her daughter. She received different diagnoses before learning about PMOS alongside her daughter. Schultz recalled discussing Touzalin’s symptoms with a pediatrician who assumed binge eating and ADHD were behind them. She felt there was more to it.
Touzalin finally felt acknowledged when a nurse practitioner connected the dots, with a definitive diagnosis from Cree last year.
‘It was like a godsend,’ Schultz said emotionally. ‘We finally had an answer and some kind of a path for her.’
In Cree’s research, Touzalin participated by taking weekly semaglutide shots for ten months. Her hair growth decreased, and her periods normalized. She felt full after meals and noticed a weight stabilization.
‘I became a happier version of myself,’ she remarked. ‘I felt like a normal person.’
Ongoing research on GLP-1s for PMOS shows promise, with initial data revealing significant benefits like weight loss and improved hormonal balance. Although insurers don’t cover these drugs for PMOS, doctors find them beneficial for patients with insulin resistance.
Dr. Rana Malek, from the University of Maryland Medical System, frequently prescribes these drugs off-label, despite side effects like nausea and constipation. Weight may also return after stopping the medication.
Insurance barriers remain challenging for Touzalin, who faced difficulties accessing GLP-1s post-study. Schultz is fighting for insurance coverage, with plans to explore drug company programs.
Touzalin hopes for universal access to these treatments for those with PMOS.
‘It’s something that could help a lot of other people,’ she noted.
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