Two years and multiple doctors often needed to diagnose polycystic ovary syndrome

January 10, 2017, Perelman School of Medicine at the University of Pennsylvania

Polycystic ovary syndrome (PCOS) is the most common endocrine disorder—and most common cause of infertility - affecting 9 to 18 percent of women around the world. Despite the prevalence of the complex and chronic condition, one-third of women diagnosed with PCOS saw at least three health professionals over the course of two years before receiving a diagnosis, according to a study from the Perelman School of Medicine at the University of Pennsylvania. The study, published in the Journal of Clinical Endocrinology & Metabolism, is the largest to date examining time to diagnosis, and reveals what the authors say are "major gaps" in education and support for women with the condition.

"Women with PCOS have an increased risk of type 2 diabetes, metabolic syndrome and anxiety and depression, and studies have shown that the longer it takes for the condition to be diagnosed, the greater the patient dissatisfaction," said senior author Anuja Dokras, MD, PhD, a professor of Obstetrics and Gynecology and director of the Penn Polycystic Ovary Syndrome Program. "These new results are concerning for both women who are, or may be, affected by PCOS, and . Not only do women often wait several months or even years before are able to diagnose the condition, but even after diagnosis, patients are often unsatisfied with the information and support they receive."

PCOS primarily affects women of reproductive age—most often between the ages of 18 to 35. Inconsistent menstrual periods, excess hair growth, acne, and obesity are the most common symptoms, but the authors caution against placing too much emphasis on only one of these symptoms.

In the study, researchers surveyed 1,385 women from 48 different countries who had been diagnosed with PCOS to learn more about their diagnosis experience and the information they were provided about PCOS. More than one-third (33.6 percent) of women surveyed reported that it took more than two years before receiving a diagnosis, and nearly half (47.1 percent) saw three or more before receiving a diagnosis. Additional results showed that only 15.6 percent of women said they were satisfied with the information they received.

When asked "how can we best support women with PCOS?" more than 90 percent of participants said providing broadly available educational materials would be helpful, while 70 percent expressed an interest in support and presentations at patient workshops. The authors suggest that greater community and clinician awareness about the full range of PCOS features is needed internationally to enable early diagnosis.

"Women with PCOS who responded to the survey were most concerned about trouble losing weight, , and infertility. Health care providers have an obligation to provide these patients with better support and information at the time of diagnosis to help them understand and manage their condition," Dokras said, noting that the absence of a targeted diagnostic test likely contributes to delays in diagnosis. "The delays in diagnosis reported in the new study suggest a significant missed opportunity to improve treatment and quality of life for these patients. Diagnosing with PCOS earlier will allow providers to intervene in a more proactive manner, treating symptoms of the condition—such as obesity, acne, excess body hair, anxiety, and depression - more effectively."

Based on the study findings, the authors are calling for the development of international evidence-based guidelines, co-designed consumer and health professional resources and international dissemination to improve experience, education, management and health outcomes.

Explore further: Women dissatisfied with long process to diagnose polycystic ovary syndrome

Related Stories

Women dissatisfied with long process to diagnose polycystic ovary syndrome

December 1, 2016
A large international survey of women with a common condition called polycystic ovary syndrome (PCOS), which is characterized by reproductive and metabolic problems, found nearly two in three were dissatisfied with the length ...

Measuring new hormone may reduce teenagers wrongly diagnosed with PCOS

September 12, 2016
Measuring blood levels of the recently discovered hormone irisin may improve diagnosis rates of teenagers with polycystic ovary syndrome, according to research presented today at the 55th Annual European Society for Paediatric ...

PCOS diagnosis tied to inflammation during pregnancy

May 29, 2014
Women who have polycystic ovary syndrome – the most common hormone disorder in women of reproductive age – are more likely to experience chronic low-grade inflammation during pregnancy than counterparts who do not have ...

Risk of fractures reduced in polycystic ovary syndrome

November 16, 2015
(HealthDay)—The risk of fractures is reduced in women with polycystic ovary syndrome (PCOS), according to a study published online Nov. 6 in the Journal of Bone and Mineral Research.

Endocrine experts call for more research into leading cause of infertility

November 23, 2015
More research is needed to better understand polycystic ovary syndrome - one of the leading causes of infertility, according to the Scientific Statement issued by the Endocrine Society.

PCOS affects one in 10 women, may be linked to other serious diseases

January 20, 2015
Despite its name, polycystic ovarian syndrome (PCOS) isn't actually a disease of the ovary.

Recommended for you

Sleep quality improves with help of incontinence drug

January 12, 2018
A drug used to curtail episodes of urinary incontinence in women also improves quality of sleep, a researcher at the Stanford University School of Medicine reports.

Frozen embryos result in just as many live births in IVF

January 10, 2018
Freezing and subsequent transfer of embryos gives infertile couples just as much of a chance of having a child as using fresh embryos for in vitro fertilization (IVF), research from Ho Chi Minh City, Vietnam, and Adelaide, ...

Study suggests air pollution breathed in the months before and after conception increases chance of birth defects

January 8, 2018
A team of researchers with the University of Cincinnati and Cincinnati Children's Hospital has found evidence that indicates that pre-and post-pregnant women living in an area with air pollution are at an increased risk of ...

Taking paracetamol during pregnancy may reduce fertility of daughters

January 5, 2018
Taking paracetamol during pregnancy may impair the future fertility of female offspring, according to a review published in Endocrine Connections. The article reviews three separate rodent studies that all report altered ...

Advanced MRI can detect placental perfusion abnormalities in pregnancies complicated by fetal CHD

January 5, 2018
In pregnancies complicated by fetal congenital heart disease (CHD), global placental perfusion was significantly decreased and regional variation of placental perfusion significantly increased as pregnancies progressed, findings ...

Recommendations to improve the quality of ultrasound imaging in obstetrics and gynecology

January 4, 2018
While ultrasound imaging is a commonly used diagnostic tool in obstetrics and gynecology, evidence suggests that the quality of ultrasound examination in clinical practice and ultrasound training in obstetrics and gynecology ...

0 comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.