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

Many women with PCOS, 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, 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 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 contributes to some of the leading causes of death and disability in women today.

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

Therefore, PCOS 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 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 as a metabolic endocrine disorder, these epidemics will continue to rise.

The NIH needs 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!

Since PCOS was first recognized in modern medical literature, the name has never truly fit the condition. 

In 1945, it became known as Stein-Leventhal Syndrome, named after the doctors who first described it in 1935. In the early 1990s, the name changed again to the standardized term PCOS — Polycystic Ovary Syndrome. 

Now, in 2026, the name is changing once more.

Although the name is changing, the community and the resources supporting patients are not. 

The organizations, advocates, providers, and patient voices fighting for your rights, your health, and your future will still be here. 

To me, the problem has never been the name itself. As history shows, names change based on the scientific community’s evolving understanding — or lack of understanding — of the condition. 

What matters most is the work that still

needs to be done: 

• Better definitions — PCOS 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. 

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

Together, we need the scientific and medical communities to truly understand our needs, our rights, and our voices. 

Until that happens, names may continue to change while the issues that truly matter remain unnoticed, underfunded, and unrecognized. 

Join me in being a voice and a light for awareness, hope, and a future where PCOS is no longer recognized because we’ve finally found a cure. 

You can start by signing the PCOS 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.