Often unrecognized PCOS (Polycystic Ovary Syndrome) now known as PMOS (polyendocrine metabolic ovarian syndrome) can cause many physical and emotional symptoms and for the up to 21% or 1 in 5 of women and girls with the condition Worldwide, it is estimated less than half know what it is or that they have it.

Many women with PCOS/PMOS, have gone years without the proper diagnosis and have silently suffered not knowing what was truly wrong. Even in today’s medically advanced era, women from around the country are experiencing the same lack of response from a medical community with little understanding of PCOS/PMOS, except in cases when the infertility aspect are addressed. As a result, single women, adolescents, LGBT, older women and those not trying to get pregnant have little chance of being diagnosed!

PCOS/PMOS can be a precursor to many life threatening conditions including type II diabetes, hypertension, cancer, cardiovascular disease, stroke and kidney problems if left undiagnosed or untreated. This means PCOS/PMOS contributes to some of the leading causes of death and disability in women today.

PCOS/PMOS is the leading cause of anovulatory infertility
PCOS/PMOS is the most common endocrine disorder in women
Over 50% of PCOS/PMOS patients have issues with insulin resistance
50% of PCOS/PMOS patients have diabetes by age 40
Approximately 34% of women with PCOS/PMOS have depression and 45% have anxiety.
PCOS/PMOS patients are at higher risk to develop high blood pressure, lipid disorders and coronary artery disease

Therefore, PCOS/PMOS leaders, government officials, organizaions and advocates are charged with identifying strategies for achieving substantial improvement in the quality of health care and education for all patients living with the syndrome. PCOS /PMOS patients can not and should not simply be dismissed as a gynecological or infertility problem!

Without the proper education and awareness of these connected disorders and the seriousness of PCOS/PMOS as a metabolic endocrine disorder, these epidemics will continue to rise.

Funders and Government agencies like NIH need to allocate more than 0.1% of funding for millions affected in The United States and needs to engage and direct federal agencies like NICHD, NIDDK and NHLBI to support more research, better physician education and better tools and resources for women and girls with the syndrome to live healthier lives with healthier outcomes!

Organizations and individuals leading the charge on a new name PMOS need to be held accountable for these changes and make a definitive and longterm commitment to follow through with the work that will be needed for sustainable change for our community.

What matters most is the work that still

needs to be done

• Better definitions — PCOS/PMOS is still widely described in medical literature and on health websites as a condition affecting only reproductive-aged women ages 15–44, despite patients existing outside those narrow definitions.

• Better understanding — only a portion of patients actually have “cystic” ovaries, while many other diagnostic criteria and symptoms continue to be overlooked or misunderstood. With mwtabplic now in the new rerminolgy guidelines and criteria need to be updated to reflect the new name.

• Better care and treatments — many medications and treatments used for PCOS/PMOS are still prescribed off-label and are not specifically approved for PCOS/PMOS patients.

• Better Advocacy and Outreach - for sustainable and impactful change there needs to be a renewed commitment by providers, patients, organizations, governments and researchers to make sure we dont repeat the errors of the last name change forcing the burden to be on patients for awareness,education and support efforts and limiting advancements of the condition somply to a name.

Join me in being a voice and a light for awareness, hope, and a future where PCOS/PMOS is no longer recognized not because of a name but, because we’ve finally found a cure.

You can start by signing the PCOS/PMOS petition with over 54,000 signatures and help demand that professionals, legislators, and scientific societies remember what this should always be about: the patient.

Let the changemakers know

We don’t want a seat at the table.

We are the table.

Jordi Xuclà

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