New International Medical Guideline for PCOS: What You Need to Know (Pt. 2)
New International Medical Guideline for PCOS: What You Need to Know (PArt 2)
A patient’s perspective on the recently released guideline aimed at streamlining the diagnosis and treatment of a leading cause of infertility
Living with polycystic ovary syndrome (PCOS) can be, at the least, burdensome. And unfortunately, that burden is frequently compounded by the difficulty women and their doctors face in the diagnosis and treatment of the syndrome. A 2016 survey published in The Journal of Clinical Endocrinology & Metabolism found that women with PCOS commonly consulted three or more healthcare providers and waited at least two years for a diagnosis. Perhaps not surprisingly, a study published in July of this year in the Journal of the Endocrine Society found that women with PCOS report negative medical care experiences, stemming largely from distrust and lack of social support from healthcare providers.
In the first part of this series, we spoke with Reproductive Endocrinologist Dr. Michael Homer on his perspective of the new medical guideline, launched internationally this summer, that aims to streamline diagnosis and care for women with PCOS.
For the second part of this series, we sat down with Amy Medling, founder of PCOS Diva and author of “Healing PCOS,” to learn more about what this guideline means for women like her living with PCOS, and for those still seeking a diagnosis.
Celmatix: Can you share a little bit about the difficulty of diagnosing and treating PCOS from a patient’s perspective? How do these experiences affect women with PCOS?
Amy Medling: I can certainly share from my own perspective. I started showing signs and symptoms of PCOS when I was 14 years old. My mother took me to different doctors for the different symptoms I experienced, which is pretty common — I saw a dermatologist for acne and hair loss, who ultimately put me on acne medication and performed a scalp biopsy.
I started having episodes where I passed out due to changes in my blood sugar, but my doctors couldn’t figure out what was going on. Because I fall into the “lean” category of women with PCOS, my doctors missed my diagnosis, assuming PCOS was only associated with women who are overweight or obese. This is very common for lean women with PCOS, and for me, it led my doctors to believe it was all in my head. Years later, I heard from my mother that they had ultimately referred me to a psychologist.
It’s incredibly damaging when a doctor doesn’t believe you when you tell them about your symptoms.
Celmatix: How do you think the new international guideline could help women who are waiting for a diagnosis or currently being treated for PCOS?
Amy: There are a lot of things that this guideline gets right. For example, they talk about lifestyle therapy and modifications, which are extremely important. For most women with PCOS, diet and exercise are crucial.
From a fertility perspective, they also recommend Letrozole as a first-line therapy, which is great. Lots of doctors aren’t even aware of Letrozole as an ovulation induction method for PCOS, so establishing a guideline around that is super helpful.
That said, I think the guideline still has some issues. The guideline still recommends the birth control pill as a treatment for women with PCOS, which can be problematic given what we know about how it helps mask women’s symptoms. I also think there’s too great an emphasis on pharmaceutical interventions, when we know there are supplements and lifestyle factors that can really help women as well.
All that said, the new guideline could definitely could help speed up diagnosis, especially since they help determine and outline the different phenotypes that women with PCOS present with. From that standpoint, anything is better than nothing.
Celmatix: What advice would you give a woman who suspects she may have PCOS?
Amy: I always say there is a lot of hope for women with PCOS.
Yes, there is no cure. But you can still thrive with PCOS.
Most women with PCOS can go on to have a healthy pregnancy. Our clocks tick at a different rate, and frequently, women with PCOS enter menopause later, meaning our fertility lasts a bit longer. Many women with PCOS can regain balance in their cycle in their late 30s and early 40s. Lifestyle changes can really help you thrive with PCOS.