PCOS Was Rebranded As PMOS. We Have Reservations.

Introducción

The name of a condition that affects between 6-10% of all reproductive-age women was recently changed from PCOS (polycystic ovary syndrome) to PMOS (polyendocrine metabolic ovarian syndrome) by an international consensus process.

Preocupaciones sobre el cambio de nombre

Though well-intentioned, we have reservations about this change. We are concerned that it might exacerbate diagnostic confusion among patients and clinicians alike, worsen delays in diagnosis and treatment, and lead to discontinuity in advocacy, research, policymaking, patient education, and clinical tracking.

Experiencia personal

As a PCOS researcher and patient, I (Soucie) recall the years before my diagnosis: the dizziness that stopped me in my tracks; rapid weight gain; inexplicable hair loss; exhaustion; feeling up and down emotionally, and decidedly not in control of my body. I vividly remember sitting in doctors’ offices for nearly 5 years, begging for answers. Nearly every appointment led to a dead end. Every time, I left without referrals, without testing, and without a diagnosis.

Impactos de la condición

As I know all too well, PCOS/PMOS is a health condition usually marked by years — if not decades — of dismissal, invalidation, frustration, and gaslighting before a definitive diagnosis and treatment plan emerge. All the while, unchecked inflammation and metabolic dysfunction can lead to severe, sometimes lifelong health complications like type 2 diabetes, sleep apnea, heart disease, stroke, liver disease, infertility, and endometrial cancer. Given how distressing this is, we also see elevated rates of mental health concerns in people with PCOS.

Experiencia común entre mujeres

My experience was sadly typical of women in many countries throughout the world. In Canada, women wait an average of 4.3 years, and have consults with at least three providers before receiving a diagnosis. In the U.S., up to 7 in 10 women (69%) go undiagnosed. The experience of seeking a diagnosis is described by women as frustrating, invalidating, emotionally exhausting, and requiring unreasonably heroic amounts of self-advocacy and persistence.

Reacciones al cambio de nombre

The name change was intended to offer a more accurate and informed description of PCOS/PMOS to improve diagnosis and quality of care by eliminating an inaccurate emphasis on ovarian cysts and including endocrine and metabolic underpinnings and impacts. While clarifying this shift can support multidisciplinary care, we believe the name change itself may lead to unintended consequences.

Conclusión y preocupaciones sobre el futuro

We believe the effort and resources that have gone into crafting and unveiling this name change siphoned limited resources and bandwidth away from the critical research, training, and advocacy for better diagnosis and treatment pathways, including a cure, all sorely needed for people with PCOS. It appears that a once very united PCOS/PMOS community is now divided over this prominent decision.

Descargo de responsabilidad

Este texto es para fines informativos y no sustituye el consejo médico profesional. Siempre consulte a un médico o a otro profesional de la salud calificado con preguntas sobre una condición médica.

Fuente: https://www.medpagetoday.com/opinion/second-opinions/121583