The past, present, and future of PCOS

Women’s health has been misunderstood and overlooked throughout history. During the 18th and 19th centuries, women were regularly diagnosed with “hysteria” for symptoms like depression, insomnia, and infertility. Women were rarely included in clinical trials before 1993, which led to a significant lack of research on how their bodies actually work. 

We’ve made progress, but we have a long way to go. Women are still told symptoms are in their head, echoing the hysteria diagnoses of the past. This may partially explain why it takes an average of 10 years to get diagnosed with endometriosis, or why almost half of the women with PCOS (Polycystic Ovary Syndrome) saw three or more healthcare providers before receiving a diagnosis.  

PCOS and hormonal health conditions are, thankfully, beginning to get more attention. Recent research, discoveries, and conversations have raised significant awareness of PCOS and how the condition affects patients. We didn’t get here overnight – progress is the result of the hard work of women’s health advocates, healthcare providers, and researchers. Here are some of the milestones in the long history of PCOS that have given women more understanding, agency, and control of their health. 

‍1. Discovering PCOS

Hippocrates described PCOS symptoms around 460–377 BC, (yes, really), but it wasn’t until 1935 that the first comprehensive report on the condition was published. The article by Irving Freiler Stein and Michael Leventhal, “Amenorrhea associated with polycystic ovaries,” described a group of patients with symptoms like polycystic ovaries, excessive hair growth, and irregular cycles. Sounds familiar? This was the first time that common PCOS symptoms were seen as connected –  prior to the report, they’d been viewed as separate conditions. 

The research shaped what we know as PCOS today – the condition is complex, impacting many systems in the body. These findings paved the way for further research of PCOS, allowing patients and providers to gain a deeper understanding of the condition. 

2. The metabolic and hormonal health connection

The association between the metabolic system and PCOS was revealed through years of research. Emile Charles Achard, M.D., and Joseph Thiers, M.D. described a patient with diabetes and excess hair growth in 1921. Years later, Dorothy R. Hollingsworth, M.D., identified a group of women with obesity who experienced excess hair growth and menstrual irregularities. In 1980, James R. Givens, M.D. noted the significant prevalence of insulin resistance in patients with hormonal symptoms. Findings like these illuminated a pattern: women with hormonal dysfunction often experienced metabolic conditions. 

PCOS is deeply connected with the metabolic system. Thanks to the research of healthcare providers and scientists, we know that PCOS symptoms can be partially managed through nutritional care. These findings shed light on what to look out for when it comes to PCOS – they suggest that if women experience metabolic concerns, healthcare providers should consider testing their hormone levels. PCOS affects multiple systems, which is why whole person care can make all the difference for women with the condition. 

3. Evolving how we diagnose PCOS 

PCOS isn’t just one symptom – it can show up differently from person to person. Each case is different, and prior to the 1990s, there weren’t criteria for how the condition was diagnosed. 

Receiving a diagnosis is often the first step in finding the right care and solutions. In 1990, the National Institute of Health sponsored a conference on PCOS, where formal diagnostic criteria were proposed and largely utilized. The criteria for diagnosis included: 

• Clinical and/or biochemical hyperandrogenism (higher levels of androgens),
• Irregular periods (oligomenorrhea) or no periods (amenorrhea)

Patients who fit both of these symptoms could, after 1990, be diagnosed with PCOS.

In 2003, the guidelines were updated to expand how PCOS could be diagnosed. The updated guidelines require two out of the following symptoms:

• Irregular periods (oligomenorrhea) or no periods (amenorrhea)
• Higher levels of androgens present in the blood (hyperandrogenism) or clinical symptoms
• Polycystic ovaries visible on an ultrasound

Including the ultrasound in the criteria broadened the definition of PCOS, which has helped more women get diagnosed. The guidelines are known as The Rotterdam Criteria, and are the standard of how PCOS is diagnosed today. ‍

4. The crucial role of reproductive hormones in our health

PCOS is often related to hormonal dysfunction that results in an abnormal menstrual cycle. In recent years it’s become widely accepted that a woman’s menstrual cycle is deeply connected with her overall health. 

Many people have likely heard of the four vital signs: temperature, pulse, respiration rate, and blood pressure. Some women’s health experts believe that the menstrual cycle can be thought of as the “fifth vital sign”, because of its crucial role in a woman’s health. Irregularities in the menstrual cycle can point to, or be caused by, underlying health conditions – which is why it’s so important for every woman to listen to her body, and take note of any changes to her cycle.  

5. Personalized, whole person care: the future of PCOS management

PCOS care has come a long way, but we still have more to discover about the symptoms, impact, and treatment of the condition. Hormonal healthcare in the US can be a disjointed experience, with women jumping from specialist to specialist looking for answers. PCOS affects multiple systems in the body, and when care is siloed, women often aren’t getting the solutions they need. Allara was created to provide women with a one-stop resource for ongoing medical and nutritional support. Our care model bridges the gap between specialists to care for women as a whole person, rather than the sum of parts. 

Health isn’t just one thing, it’s everything – which is why we’re advocating for further research into how hormonal conditions can affect all aspects of a woman’s life. In December of 2024 we published a study on how PCOS symptoms impacted work productivity and confidence in the workplace. The study revealed:

• Over 50% of women with PCOS have missed work due to their condition.
• A significant 72% reported that PCOS adversely affects the quality of their work, with 51.5% feeling held back in their careers due to PCOS.
• Black women, those without health insurance, and those dissatisfied with their PCOS care are more likely to miss work.

Moving forward, we plan to continue exploring the impact of PCOS, and the solutions available to patients. There is more innovation in women’s health than ever, and we can’t wait to see what the future holds.