Missed, dismissed, and undiagnosed: The silent struggle of PMOS

Millions of people suffer from infertility each year, and yet a leading cause of infertility derives from a genetic disorder that most women do not even know they have.

Polyendocrine Metabolic Ovarian Syndrome (PMOS), formerly known as Polycystic Ovarian Syndrome (PCOS), is a chronic illness and genetic hormonal disorder that one in eight women suffer from.

PMOS was recently renamed in order to avoid confusion about the condition and improve the degree of care and understanding of the diagnosis.

According to the Endocrine Society, the renaming of PMOS has been 14 years in the making and represents a movement to make the diagnosis less focused on 'cysts' and ovaries.

Physical symptoms of PMOS include irregular menstrual cycles, cystic acne, facial hair and weight gain. While some of the internal symptoms include mood changes, fatigue, brain fog and anxiety.

PMOS is caused by high levels of androgens, also know as male hormones, and insulin resistance. Untreated PMOS can have many long-term effects on women, including cardiovascular and metabolic complications, endometrial or ovarian cancer and infertility.

Although PMOS affects many women in the world, it is an illness that continues to be understudied. For this reason, many women experience symptoms for years before receiving diagnosis.

Many girls begin to see symptoms of their PMOS in their teenage years.

Kamille Anderson, a 20-year-old student living in Provo, Utah, shared that she was diagnosed with PMOS in November 2025, but she fought to figure out what was happening with her body since she was 12 years old.

"I would go five or six months without getting a period," Anderson said. "Id be like, 'There's something wrong,' and doctors would tell me, 'Actually, you're just a teenager, it'll get better.'

Many women have had similar experiences with hormonal issues dismissed as normal. For some women, including Anderson, being offered birth control as a first-line treatment can be concerning.

Anderson shared that she was strongly against birth control as she watched her mother struggle through many side effects while taking the contraceptive. Anderson already decided she wouldnt take it when it was offered as her initial treatment against her symptoms.

Birth control is a hormone-balancing pill that can lower androgens, which are produced in excess in women who have PMOS. While taking birth control will decrease some of the hormonal stresses placed on a PMOS body, there are many side effects to birth control that make some women less open to trying the pill.

Some of the potential side effects of a hormonal birth control pill include: irregular bleeding, nausea, tenderness, migraines, mood change, weight gain, appetite changes and more.

Sara Cox, a 23-year-old living in Laguna Beach, California, said once she started seeing gynecologists for her undiagnosed PMOS, she was told to immediately start birth control at the age of 15.

Being on birth control for all of high school messed me up," Cox said. I was depressed, I was in therapy and I gained over 50 pounds. I was just a different person. Nobody recognized me from it."

Cox shared that she had no choice when it came to the decision to start taking birth control as a teenager. She said it affected her health physically and mentally for all of high school until she turned 18 and decided to quit.

While birth control is used as a quick fix for many hormonal issues, getting diagnosed with PMOS is another battle. Many women will go undiagnosed until they face infertility later in life, while others have to seek medical attention from multiple sources.

Brianna Magnusson, the associate chair of Public Health at Brigham Young University, wrote a research paper about the lack of knowledge of PMOS after a student brought the issue to her attention.

It is estimated that up to 70% of PCOS patients are undiagnosed, and the reporting of these symptoms in those without PCOS may reflect some undiagnosed PCOS patients, Magnusson said.

Collette Sommerville, a BYU graduate, was diagnosed with PMOS about a year ago, but not before having a very unsatisfactory experience with a doctor.

He completely blew off my symptoms," Sommerville said. "I was wanting to figure out why I was having such painful periods, and he just slapped a Band-Aid on the problem and was not helpful at all. He didn't give me any counseling on the side effects.

Sommerville was prescribed birth control after a very quick visit with a doctor, who assured her there was no deeper cause to her pain. In a feedback questionnaire sent by her doctor's office, Sommerville gave a very honest reaction to her dismissive and painful appointment, which eventually resulted in a follow-up with the head doctor, who diagnosed her with PMOS.

Katie Hoffman, a wife and mother, became a metabolic health coach after she learned how to work with and heal her PMOS in natural ways.

I always thought of it as a tree, and the root is insulin resistance, and the branches of the tree were all the different things," Hoffman said. "One branch was my PCOS, another branch was my pre-diabetes and one branch was my high cholesterol.

Hoffman explained the solutions were to always cut off a branch with a medication or a workout plan, but the root problem was still there, so branches would just grow back.

The Journal of Clinical Endocrinology & Metabolism found that only 35.2% of women were satisfied with their diagnosis experience, and only 15.6% were satisfied with the information about PMOS provided at the time of diagnosis

While the battle with PMOS diagnosis is ongoing, many more resources have become available. Cox said that just as people were taught to do research papers growing up, it is also important to complete research on PMOS for yourself.

The research for PMOS may be limited in comparison to other health or hormonal disorders, but there is information available.

For women like Cox, Anderson and Sommerville, a diagnosis did not come from a single appointment. It came from persistence in second opinions, research and the willingness to say, 'Something isnt right,' even when they were told otherwise by those they trusted.

Their experiences highlight the challenges some patients with PMOS face when seeking diagnosis and treatment within the healthcare system. While many described the process as frustrating and emotionally difficult, several emphasized the importance of advocating for their own health concerns.