UNDERSTANDING PCOS AND ITS DIAGNOSIS Anuja Dokras MD, PhD Director PENN PCOS CENTER President, AE-PCOS Society Professor of Obstetrics & Gynecology University of Pennsylvania, Philadelphia, USA
is an international organization dedicated to promoting knowledge, and original clinical and basic research, in every aspect of androgen excess disorders, improving the understanding, diagnosis, treatment, and prevention of these disorders. YEAR OF THE PATIENT
Participation from eight AE-PCOS members Three sold out regional U.S. events educating over 850 patients and healthcare professionals - Philadelphia (326), Los Angeles (251), Atlanta (279) Attracted attendees from all over the U.S., Canada, Spain, New Zealand, Costa Rica and Italy Featured by over 250 top media outlets
PARTICIPANT CHARACTERISTICS Number of Total n=1381 women (%) Age (years) 18-25 190 (13.8) 26-35 705 (51.1) 36-45 390 (28.2) >45 96 (6.9) BMI: median (IQR) (kg/m²) 35 (29-42) World region of residence North America 1 732 (53) Europe 2 583(42.2) Other 3 67 (4.8) Time since diagnosis: median (IQR) (years) 8 (4-15)
SATISFACTION WITH DIAGNOSIS EXPERIENCE Aspects of diagnosis experience Number of women (%) Satisfaction with diagnosis experience Dissatisfied or indifferent 895(64.8) Satisfied 486 (35.2) Time until diagnosis (years) < 6 months 595 (43.4) Up to 12 months 183 (13.3) Up to 2 years 133 (9.7) More than 2 years 461 (33.6) Number of physicians seen 1-2 727 (52.9) 3-4 476 (34.7) 5 or more 170 (12.4) Satisfaction with PCOS information Dissatisfied or indifferent 617 (82) Satisfied 137 (18)
Do you think you have PCOS? or Do you have a diagnosis of PCOS? Why do you think you have PCOS? or Why do you have a diagnosis of PCOS?
Do you think you have PCOS because. Have cysts on your ovaries Irregular periods as a teenager Excess hair on your face, abdomen You are unable to loose weight easily You gain weight mostly in the abdomen Hair loss Went to the ER because a cyst in your ovary ruptured
Stein- Leventhal Syndrome 80 years! Stein IF, Leventhal ML. Amenorrhea associated with bilateral polycystic ovaries. Am J Obstet Gynecol, 1935; 29: 181-91.
STEIN- LEVENTHAL SYNDROME Case series of 7 women Obese, excessive hair, irregular menses, difficulty getting pregnant Uterus Ovary
Ovary Uterus Ovary
ROTTERDAM CRITERIA FOR PCOS Irregular menses Increased hair growth or high male hormones Polycystic appearing ovaries Most common endocrine disorder in reproductive age 10-15%
IRREGULAR MENSES Less than 6-9 menses per year Blood tests Thyroid problem Prolactin problem Low progesterone levels PCOS is the most common cause for no ovulation
INCREASED HAIR GROWTH
FG score used to quantify hair growth
SCORE CHANGES BY ETHNICITY Author Country Ethnicity Cut Off Api, 2009 Turkey Middle Eastern 11 Noorbala, 2010 Iran Middle Eastern 10 Moran, 2010 Mexico Hispanic 10 Gambineri, 2011 Italy Mediterranean 9 Asuncion, 2000 Spain Mediterranean 8 DeUgarte, 2006 USA Caucasian/Hispanic 8 African-American Tellez, 1995 Chile Hispanic 6 Kim, 2011 Korea Chinese 6 Cheewadhanaraks, Thailand Thai & Chinese 3 2004 Zhao, 2007 China Chinese Han 2
ACNE
Female Pattern Balding
total testosterone ng/dl High Testosterone Levels Total testosterone Free testosterone (most commonly elevated) 1200 1000 800 600 400 200 0 females PCOS females males
Ultrasound Evaluation of Ovaries follicle number and ovarian volume
Polycystic Ovaries
WHAT IS AN OVARIAN CYST?
SURGERY FOR PCOS
Are there different types of PCOS? 75% 75% ALL Menses 60-80%
NIH WORKSHOP ON PCOS - 2012
CHANGE IN PCOS CRITERIA WITH AGE Age years <20 21-30 31-39 Number of subjects 364 675 173 Follicle number (per ovary) 11.5 ±4.9 11.3 ± 4.8 9.6 ± 4.7** Testosterone(ng/dl) 77 ±30 78 ± 31 69 ± 33* Free Androgen Index 9.9 ±7.8 8.6 ±7.1 7.1 ±6.4 Panidis 2012
ETHNIC DIFFERENCES IN PCOS PHENOTYPE Controls Iceland US US US US PCOS PCOS PCOS PCOS PCOS Ethnicity C C C AA H A n 32 105 172 44 25 21 Testosterone (ng/dl) 35.6 ± 17.0 54.0 ± 25.7 66.2 ± 35.6 73.9 ± 41.8 77.4 ± 53.1 57.7 ± 29.7 Free testosterone (ng/dl) 0.6 ± 0.3 1.1 ± 0.6 1.3 ± 0.8 1.7 ± 1.1 1.8 ± 1.4 1.3 ± 0.9 BMI (kg/m2) 30.2 ± 7.5 31.5 ± 7.7 30.7 ± 9.2 36.3 ± 7.9 32.3 ± 10.3 26.3 ± 5.9 PCO morphology 31% 92.5% 99.3% 97.4% 95% 100% Welt et al, 2006 JCEM
DIAGNOSIS IN ADOLESCENTS Defining excessive hair growth/abnormal male hormone levels Irregular menses Multi-follicular ovary Over diagnosis labeling Missed diagnosis opportunity to intervene
DIAGNOSIS OF PCOS WHAT ABOUT INSULIN RESISTANCE? WHAT ABOUT LH/FSH RATIO? WHAT ABOUT OBESITY?
ACANTHOSIS NIGRICANS Raised, velvety, hyperpigmentation of skin Axilla, neck, intertrigenous areas Marker of insulin resistance Associated with PCOS
TAKE HOME MESSAGE Do you think you have PCOS? or Have you been told you have PCOS? PCOS is a diagnosis that should be made by your doctor Why do you think you have PCOS? or Why were you told you have PCOS? You should know which criteria for PCOS you have
Family Physician/Internist Pediatrician Gynecologist Medical Endocrinologist Cardiologist Polycystic Ovary Syndrome Gynecologic Oncologist Reproductive Endocrinologist High Risk OB Dermatologist
PENN PCOS CENTER Reproductive Endocrinologist Nurse Practitioner Nutritionist Research Coordinator Dermatologist Psychiatrist/ Clinical Psychologist Weight management