We’ve talked to experts researching the condition, current PCOS diagnosis criteria, and put together a list of 3 things you may not know about PCOS.
PCOS is the Most Common Endocrine Disorder
Polycystic Ovary Syndrome (PCOS) is the most common endocrine disorder of people of reproductive age, affecting over 116 million people worldwide, or 1 in 10 menstruating people.PCOS diagnosis can be difficult as the causes are multifactorial including genetics, ovarian dysfunction, and endocrine imbalance. Each diagnosis is unique and usually takes up to five years to diagnose, even more in areas where PCOS is less well known.
PCOS is Understudied and Underdiagnosed Globally
From available data, PCOS affects ten percent of menstruating people. However, the World Health Organization estimates that up to 70 percent of people affected by PCOS worldwide remain undiagnosed. Most epidemiological studies on PCOS have been conducted in North America, Australia and Europe which means there is limited research from regions like Africa and Asia. Enhancing public awareness and educating health professionals on how to properly diagnose is critical to bridging the gap in the diagnosis of PCOS.The 2023 International PCOS Guidelines states that although management of PCOS is improving worldwide, the available research is still very low to moderate in credibility. In fact, close to 40 percent of the research was unusable for various evidence-based reasons. It is critical that we study the menstrual cycle ethically and with data drawn from a variety of lived experiences.
No New Therapies in the Last 40 years
The standard of care for PCOS includes combined oral contraceptives and Metformin. While both medications can help treat PCOS symptoms, neither treat the root cause.The good news is that new treatment options are emerging in research and clinical trials which are proving to help symptoms and treat the root cause.
Dr. Jerilynn Prior and her team at the Center for Menstrual Cycle and Ovulation Research (CeMCOR) in Vancouver, British Columbia are leading the PCOS Treatment Study. A study funded by the BC Women’s Health Research Institute and conducted with progesterone donated by the maker, Besins Healthcare International.
Dr. Prior explains how this study initially began, "When I first opened my endocrinology practice in Vancouver in the early 1980s, I was referred women with unwanted facial hair and/or PCOS. I’d had no training in how to treat it! I knew that women with PCOS were at increased risk for uterine cancer that is caused by too much estrogen and not enough progesterone. So, I began prescribing medroxyprogesterone (the closest synthetic we had to then-unavailable natural progesterone) for 14 days a month. Women living with PCOS reported feeling better and got regular periods. For those with severe hirsutism, I added spironolactone to block testosterone effects. That is the origin of our current study—it only took 30+ years!”
We wanted to learn more so we arranged to interview Kaitlin Nelson, a Master’s candidate and the PCOS Treatment Study research coordinator at CeMCOR.
Kaitlin tells us that this study seeks to improve PCOS quality of life by treating the root cause with cyclic progesterone and spironolactone. Cyclic progesterone is usually missing in PCOS but when applied as treatment can help correct signaling between our brain and reproductive system. Spironolactone, on the other hand, helps block the actions of testosterone and other male-type hormones, which cause many of the PCOS-related symptoms.
PCOS is believed to be caused by rapid brain/hypothalamus pulsing hormones which lead to too-rapid pulsing of and high levels of luteinizing hormone (LH). This causes an overproduction of testosterone by the ovaries. This overproduction of testosterone prevents ovulation and elevates estrogen levels. Cyclic progesterone serves as an “ovulation and luteal phase replacement” and may promote ovulation. Ovulation helps stabilize PCOS symptoms and prevent associated bone loss, heart attacks and endometrial and breast cancers, and maybe a viable PCOS fertility treatment.
Although the study is not quite complete, after six months of treatment, Kaitlin reports that many participants continue to ovulate off any treatment and may not need to continue long-term. Of course, because of the adaptive nature of the menstrual cycle, major stress may shift hormone levels and trigger PCOS again, and another round of therapy may be required to restart ovulation.
Kaitlin is also excited to share that many participating in this study have seen increases in self-confidence and autonomy related to their health. Having your condition acknowledged and working in partnership with healthcare providers allows people to move through life with more ease.
SPIOMET4HEALTH is an international clinical trial led by Dr. Lourdes Ibañez, in partnership with seven hospitals in Europe. SPIOMET4HEALTH is a new single medication tablet that combines low doses of three medications: spironolactone (SPI), pioglitazone (PIO) and metformin (MET).
SPIOMET4HEALTH aims to treat the cause of PCOS in adolescents by normalizing ovulation and endocrine-metabolic status with SPIOMET, as well as lifestyle changes like diet and exercise to promote weight loss. If successful, it will be the first of its kind and may even help reverse complications associated with PCOS like diabetes and infertility.
What’s Next for the PCOS Community
As a condition that affects so many areas of a person’s life, it can be endlessly challenging to both navigate and treat. The good news is that a small group of researchers, and an even larger group of PCOS affected individuals, are passionately working towards lasting solutions. Change starts with advocacy both on a personal and collective level. Participating in a research study or joining an online community or advocacy group can be life changing. In addition to the PCOS Treatment Study and SPIOMET4HEALTH, PCOS Challenge provides ongoing studies that people with PCOS can join and/or learn from.We’ve only just scratched the surface.
