A young woman sits nervously in the exam room of her gynecologist. Her symptoms are typical for a lady in her early twenties: irregular periods, cramping, and facial hair growth. She’s a little  overweight and in danger of developing diabetes, which runs in her family. After taking in her concerns, the doctor diagnoses her with a reproductive health condition called polycystic ovarian syndrome (PCOS) and writes her a script for birth control. The doctor promises that this will regulate her periods and relieve her symptoms. With the prescription in hand and instructions to lose weight, the young woman is sent on her way.

PCOS Affects 21% of Women, and Yet Doctors Aren’t Properly Educated About It

This experience is not an uncommon one. As many as 21% of women worldwide have PCOS, a reproductive disorder that often comes with additional risk for metabolic and psychological symptoms such as diabetes, anxiety, and depression. Women suffering from PCOS commonly report irregular periods, pain during ovulation and PMS, as well as thicker hair follicles on the face and chest.

The sources of these symptoms appear to stem from hormone imbalances, which produce mixed signals that confuse the body and keep it from working the way it should. Although PCOS is a common disease, women seeking treatment frequently report frustration and dissatisfaction, feeling they are not being properly educated or supported by their healthcare providers. 

A key factor contributing to this dissatisfaction is a lack of physician education. A 2017 survey conducted by the American College of Obstetrics and Gynecology (ACOG) and the American Society of Reproductive Medicine assessed physicians for their knowledge of PCOS and their treatment practices. Less than half of the gynecologists surveyed by the ACOG reported knowledge of the criteria they used to diagnose PCOS, although diagnostic criteria has been standardized and internationally endorsed, including by the NIH. Physicians also reported lack of knowledge about the metabolic and psychological components of PCOS. A more recent survey conducted by the ACOG for physicians in training identified similar gaps.

As in scientific funding agencies, the medical profession appears to be insufficiently educated about this disease, although it impacts approximately 10% of their female patients.

Current Treatment Options for PCOS Fall Short

Because of these gaps, the care offered to women suffering from PCOS is often incomplete. Birth control is typically the first treatment option offered to women in an effort to correct reproductive hormone imbalances. However, because birth control acts as an ovulation inhibitor, this treatment option fails to bring the body back to a normal state of functioning. Treatment with the pill also fails to address the additional metabolic and psychological risks.

Another common treatment option is Metformin, which again can improve the reproductive components of PCOS, but not others. Physicians also reported inconsistency in screening for metabolic diseases like diabetes in the 2017 ACOG survey. However, 98% of physicians in training reported conducting such screens, demonstrating some improvement. Regardless, neither survey reported psychological referrals among the treatment recommendations.

Not only are there gaps in current medical treatment of PCOS, there is also lack of support for research to explore new treatment possibilities.

Although PCOS is Common, PCOS Research Remains Underfunded

A 2017 study from the Journal of Clinical Endocrinology and Metabolism reported that, although PCOS impacts roughly 10% of the world's population, the National Institute of Health (one of the largest research funding agencies in the world) has not funded PCOS research appropriately. Compared to rheumatoid arthritis (RA), a disease that impacts a similar percentage of the population, from 2006 to 2015, the amount of money awarded by the NIH for PCOS research was less than 50%. Additionally, the types of grants typically awarded to scientists pursuing PCOS research were of a lower pay scale than the types of grants awarded for RA research, meaning that scientists conducting PCOS research received less financial support on average to conduct their studies.

Without support for investigation into the underlying causes of PCOS, this disease remains a mystery, and effective treatment regimens remain elusive.

Underfunding of PCOS research may be due in part to funding agencies in the NIH misunderstanding PCOS as a purely reproductive illness. Of the institutes within the NIH awarding research grants, 68% of the awards for PCOS research came from the National Institutes of Child Health and Development (NICHD). The NICHD is one of the lowest-funded institutes within the NIH.

Despite the close relationship between PCOS and diabetes, the National Institute of Diabetes and Digestive and Kidney Diseases – which had among the top five budgets of any NIH agency – awarded no money to PCOS research. The National Institute of Mental Health – which landed in the top 7 most funded NIH institutes at the time of the report – also did not contribute to PCOS research funding.

This distribution of funds and the overall underfunding of PCOS research suggests that the NIH does not sufficiently recognize what current research has revealed about the ways this disease impacts women’s lives. As a result, scientific efforts to uncover underlying causes and improve treatment options are left unsupported.

The Lack of Education About PCOS is Unjust to Women

Lack of education and recognition for PCOS represents an area of injustice to women that is not often recognized. This complex yet common disease is frequently misunderstood and under supported, leaving women suffering with it feeling the same way. A greater understanding of PCOS and how extensively it impacts both the lives of individual women and society as a whole is necessary to address this area, which has long been neglected. As we continue to seek empowerment and justice for women, let us not forget to also look here.