A condition that can impact women’s fertility and diabetes risk goes undiagnosed in many cases, but experts hope giving it a new name will help more patients receive care, reports BritPanorama.
Polycystic ovarian syndrome, or PCOS, can present as cysts in the ovaries, as the name would suggest. However, the condition can include many more symptoms, including irregular menstrual cycles, difficulty getting pregnant, female-patterned baldness, type 2 diabetes, and cardiovascular disease, according to the World Health Organization (WHO).
An estimated 10% to 13% of reproductive age women around the world are affected by PCOS, but around 70% do not know they have it, according to WHO.
One reason for this lack of awareness could be the name itself, which some experts argue does not fully encapsulate the condition’s broader impacts. Dr. Helena Teede, an endocrinologist and professor of Women’s Health at Monash University in Australia, is leading the process to change the name and is the lead author of a paper published on Tuesday in The Lancet discussing this shift.
Over the course of her more than 25-year career, Teede said she’s had to dispel misunderstandings that lead people to think the condition is merely about ovarian cysts, resulting in missed diagnoses and inaccurate treatment.
The Lancet paper has officially changed the name of the condition to one that researchers believe will provide more clarity: polyendocrine metabolic ovarian syndrome, or PMOS.
It isn’t just about cysts
A primary goal of the new name is to bring attention to the wide range of impacts the condition has on those who suffer from it.
“By calling this condition polycystic ovary, we’re missing the big picture,” said Dr. Alla Vash-Margita, associate professor of obstetrics, gynecology and reproductive sciences at Yale University and division chief for pediatric adolescent gynecology at the Yale School of Medicine.
“There was a lot of stigma and myth related to this name. People thought they have large cysts, which they do not have,” she added.
The syndrome was initially perceived as a reproductive disorder, according to Dr. Andrea Dunaif, a professor of medicine in the division of endocrinology at the Icahn School of Medicine at Mount Sinai in New York. It was found to be associated with a slight increase in male hormone levels, which can cause irregular periods and fertility issues. However, in the 1980s, researchers discovered a link with insulin resistance, complicating the understanding of the condition.
“The body has to produce more insulin, and if the body can’t keep up with the needs, then diabetes can develop,” Dunaif explained.
Research has increasingly suggested that PCOS is a significant metabolic disorder, with heightened risks for conditions such as liver and heart disease. Furthermore, other symptoms have also been associated with PMOS, including sleep apnea, depression, anxiety, and body dysmorphia, according to Vash-Margita.
A name to take seriously
The “polyendocrine” part of the new name aims to accurately describe it as an endocrine or hormone condition, Teede noted. Individuals with PMOS experience disturbances in their endocrine systems, which can lead to extensive health impacts.
The journey to change the name took 14 years and involved collaboration among 56 patient and professional organizations worldwide, as explained in the Lancet paper.
“This shift will reframe the conversation and demand that it is taken as seriously as the long-term, complex health condition it is,” said Rachel Morman, Chair of Verity PCOS UK, in a news release.
Experts hope that a new name will increase the condition’s visibility and ensure it receives the attention it warrants. Although physicians in the gynecology field have made strides in recognizing the importance of PMOS, the condition’s impact extends across various medical specialties, underlining the need for collaborative care.
How to get the care you need
When should one consult a doctor about PMOS? A key indicator is a history of irregular menstrual cycles, according to Dunaif. Having eight or fewer menstrual cycles a year or cycles that last less than 40 days should prompt an evaluation for hormonal issues.
Your doctor can assess hormones for insulin resistance or elevated androgen, which can manifest as issues like acne or increased body hair, Boots suggested.
Current medical approaches to managing PMOS often focus on alleviating symptoms rather than treating underlying causes. Initial interventions typically involve lifestyle modifications, such as adopting a balanced diet and increasing exercise; weight loss has been associated with improvements in PMOS symptoms.
Medications may also be prescribed for metabolic symptoms, including GLP-1s, although there are no significant trials specifically involving women with PMOS. Birth control pills are frequently used to regulate menstrual cycles and minimize hormones causing undesirable effects.
Moreover, fertility treatments can assist individuals trying to conceive.
Addressing PMOS, however, requires more than patient awareness of symptoms. Effective treatment hinges on finding healthcare providers who can look at the entire picture and coordinate care harmoniously. “Seeing these patients as people, and doing our best to give them care with empathy while individualizing their treatment, is crucial,” Boots emphasized.
