For 14 years, Grace Hamilton lived with an undiagnosed disease that left her feeling frustrated and alone. Misunderstanding from other kids marked her youth, along with subtle disappointment from her parents, who had no idea that her climbing weight and fluctuating emotions were largely disease driven.
Gynecologists assured Hamilton the unusually painful and irregular periods that started at age 11 and kept her home from school would eventually regulate on their own. They never did. Other doctors told her to just eat less and exercise more, words that hurt, as she was highly active in sports. In her teens, a psychiatrist incorrectly diagnosed her with bipolar disorder.
Hamilton, now 28, has PMOS, formerly known as PCOS, or Polycystic Ovary Syndrome. The metabolic and hormonal disorder was renamed Polyendocrine Metabolic Ovarian Syndrome this week following a landmark global consensus to better recognize the seriousness and complexity of the disease.
See related story: Global Experts Establish New Name for PCOS to Reflect Multisystem Disease
PMOS affects 170 million women worldwide, half of whom remain undiagnosed. While it is a top cause of infertility, the metabolic disease – often marked by abnormal insulin and testosterone levels – is much more than missed periods.
After moving to Colorado and finally being diagnosed by a nurse practitioner, Hamilton joined a clinical trial in October 2024 at the University of Colorado Anschutz evaluating semaglutide – the popular diabetes-turned-weight-loss drug – as a therapy for PMOS. Now, for the first time in her life, her symptoms are controlled.
“Everything is regulated,” said Hamiliton, who has lost over 100 pounds since beginning the trial led by Melanie Cree, MD, PhD, a professor of pediatrics-endocrinology at the CU Anschutz School of Medicine who helped lead the name-changing effort. “My insulin is regulated. My testosterone is at normal levels for my age. My cycle comes regularly. It’s like my body finally knows what to do.”
Today, Hamilton has joined Cree, a world-recognized PMOS researcher and founder of one of only two pediatric multidisciplinary clinics in the country at CU Anschutz, in bringing awareness to the disease.
“I think it would've saved me a whole lot of medical trauma,” Hamilton said of the name change. “And it would've given my parents more understanding of their daughter earlier in her life.”
Key points:
- PMOS (formerly Polycystic Ovary Syndrome, or PCOS) is a common hormonal and metabolic disorder affecting about one in 10 females worldwide.
- The disorder is often underdiagnosed or misdiagnosed, with up to half of individuals unaware they have it.
- PMOS is not just a reproductive condition – it is linked to serious health risks such as insulin resistance, type 2 diabetes and fatty liver disease.
- Emerging research at CU Anschutz is evaluating semaglutide as a potential treatment to improve hormone balance, insulin resistance and ovulation in patients.
Hamilton grew up in Nashville, Tenn., living mostly with her father after her parents divorced when she was young. While always close with her family, a lot of “healing” has come since her diagnosis, especially with her dad, she said.
“I think growing up, he just didn't understand why I couldn't lose weight and why I looked different than my family,” said Hamilton, as she sipped hot tea on the back patio of her favorite coffee shop in Arvada.
After graduating from Auburn University in 2020, Hamilton moved to Arvada, where she works as an early learning teacher for children of teen mothers at Hope House Colorado.
The mental aspects of the disorder were the hardest part. “I've always had really high highs and really low lows, and I think at the time, maybe everybody was like, ‘Oh, it's temper tantrums,’ when it was hormones.”
Although always active during school, playing basketball, running cross-country and swimming in the off-season, “I just could not do anything but gain weight,” Hamilton said. “So I definitely endured a lot of misunderstanding (from kids and adults). And I don't think that's fair to place on anybody, but especially on a child.”
Cree said she hopes the name change, which includes updated clinical and medical education guidelines, will help prevent the stigma for girls through improved awareness and diagnosis of the metabolic disorder. PMOS involves multiple symptoms and disciplines beyond gynecology, including endocrinology, dermatology and psychology, she said.
Much of Cree’s lab’s work has been focused on understanding insulin resistance in PMOS and the disorder’s influence on fatty liver disease, both contributors to type 2 diabetes (T2D).
“My research has found that our teenage girls are 18 times more likely to develop type 2 diabetes early.” And T2D in youth has been shown to be much more aggressive than in adulthood, leading to deadly complications in their 20s and 30s, Cree said. A landmark study published last year by CU Anschutz researchers highlighted the seriousness of T2D in youth.
Fatty liver disease, a top cause of liver failure today, also strikes 40% of Cree’s non-Hispanic patients and 65% of her Hispanic patients in her clinic at Children’s Hospital Colorado, she said. “Pre-COVID, 68% of our girls had depression.”
Cree’s recent study focus has pivoted toward finding therapies for the disorder. Drugs are now largely limited to birth control pills aimed at regulating hormones and periods and metformin focused on controlling insulin resistance, both of which don’t always work for patients.
PMOS/PCOS symptoms can include:
- Missed or irregular periods
- Infertility due to not ovulating regularly or often
- Depression or anxiety
- Extra body hair, including on the face, chest, stomach and back (hirsutism)
- Weight gain, especially around the belly
- Acne or oily skin
- Male-pattern baldness or thinning hair
- Skin tags on the neck or armpits
- Dark or thick skin patches
Cree’s lab began looking at semaglutide for its potential to influence many of the disease’s symptoms, both through weight loss and, as new research indicates, mechanisms of its own.
Studies suggest the drug, widely known by its brand names Ozempic and Wegovy, reduces “food noise” in the brain and slows gastric emptying, making people think of food less often and feel fuller longer. Semaglutide can also improve insulin resistance by lowering blood sugar and testosterone levels, reducing diabetes and fatty liver disease risk and reversing PMOS side effects.
Since she began taking semaglutide during Cree’s trial, Hamilton has weaned off of all medications, including anti-depressants, and feels mentally and physically well, she said.
During the 10-month semaglutide study, Hamilton’s total testosterone levels dropped from 72 at diagnosis to 39 (normal range 15 to 70 ng/dL) and her free testosterone went from 8.5 to 4.7 (normal range 0.3 to 4.2 pg/mL), said Yesenia Garcia-Reyes, MS, Cree’s research manager who monitors trial participants.
“My insulin is regulated. My testosterone is at normal levels for my age. My cycle comes regularly. It’s like my body finally knows what to do.” – Grace Hamilton, on life after joining a GLP-1 clinical trial
Not all participants responded the same to semaglutide in their studies, which included an earlier pediatric clinical trial using an oral version of the drug, Garcia-Reyes said. That trial found notable improvements in fatty liver disease for girls with PMOS on the oral GLP-1.
The current trial (which Hamilton was part of) uses injectable semaglutide and is looking largely at its effect on establishing regular ovulation.
“People tolerate the medication differently,” Garcia-Reyes said. "Some participants experienced gastrointestinal issues, while others probably could have benefited from going to a higher dose,” she said.
Cost is another potential downfall, as the drug is not approved for PMOS, leading to accessibility problems, Garcia-Reyes said. “One of the issues we're having right now is, once our patients are done with the study, a lot of them would love to continue on this medication and can’t. So that's a big challenge.”
Cost is a burden for Hamilton, who cannot imagine going off of semaglutide now that she’s finally found something that works. She gets the medication at a discounted rate through the manufacturer but still has to budget carefully for the extra almost $500 a month.
Hamilton keeps a sharper eye on her overall health today, now that she knows the elevated risks that can come with the disease. She has her circle of women – including her mother, grandmother, sister, acupuncturist, personal trainer and church group – who support her in her health goals and in her efforts to shine light on the disease.
In September, Hamilton joined Cree in speaking before the National Institutes of Health about PMOS and the importance of research. “I'm so grateful for the study. I'm grateful for what I've learned. I'm grateful for Dr. Cree. And I genuinely did want to thank the NIH for their funding for the study and share how this has really impacted my life.”
More information:
- Search PCOS/PMOS on the CU Anschutz research page to learn about the semaglutide study (ages 12 to 35).
- Contact Yesenia Garcia-Reyes, MS, at PCOSresearch@cuanschutz.edu or 720-777-6984 for study information.
- See pediatric clinic for care for girls and teens.
- See adult clinic headed by university gynecological faculty for adult care.