Guest post by Laura Dimler, M.A.
I’m not overweight and don’t struggle with my weight—but I have PCOS?! Women with Lean PCOS are a group that some people are not even aware exists.
What is it?
There are 2 main types of PCOS:
- A majority (80%) of women with PCOS have an above average or high Body Mass Index (BMI), insulin resistance, and the typical PCOS symptoms (e.g., ovarian cysts, male pattern baldness, acne, and hirsutism).1 Many of these women are not diagnosed until fertility issues arise in adulthood.2
- Some women with PCOS have a normal, if not low BMI,3 may or may not have insulin resistance, and exhibit symptoms that are typical to female pubertal maturation during adolescence (e.g., acne, irregular menstrual cycle, and potentially depression).2 As these women mature, the symptoms do not disappear as is thought to happen once puberty ceases.
A typical prescription for most women with PCOS is to lose a small amount of weight (e.g., 10-15 pounds), as this can improve insulin levels and relieve some physical symptoms (i.e., acne and hirsutism).1 But what about the other 20% of us? If you are in this group, I understand how you feel. You’ve asked yourself, “Won’t I be unhealthy if lose weight? Are there any ‘magic solutions’ for me? Do I really have PCOS? How can I help myself if the available information is not applicable to me?” Fortunately, this type of PCOS has attracted research attention in recent years, although it still baffles the practicing, non-research oriented doctors (yes, even endocrinologists).
My Diagnosis Story
I was 19 years old, 5’2”, and didn’t even weigh enough to donate blood. I never had a regular menstrual cycle, but was told that was normal for some adolescents. I also struggled with severe acne since junior high. I took Accutane twice: when I was 16 and 18, but was told that the problem would go away in adulthood, once my hormone levels were regulated. Unfortunately, my acne just kept coming back.
After one of my most embarrassing moments which involved a white bathing suit and an irregular menstrual cycle, I decided to go to my family doctor with my symptoms. She ordered an ultrasound and ran a series of blood tests within a span of a few weeks. Although the ultrasound did not show any ovarian cysts, my lab results revealed unbalanced hormone levels, indicating that I had PCOS. My doctor did not fully understand the cause of the problem since I was so thin, but prescribed me the typical medication regimen for PCOS (birth control pill and spironolactone) and the typical life-style regimen of eating well and exercising more often.
When I moved to a new city to begin my Ph.D. program, I had to find a new general practitioner and endocrinologist, who questioned if I had been misdiagnosed. I had to convince them that I did have PCOS despite being healthy, not insulin resistant, and not overweight. They asked me to stop my medications to see if my body ‘sorted things out’ on its own. In the meantime, repetitions of the same blood tests, an ultrasound, and a third opinion from a women’s reproductive endocrinologist revealed that I had a sub-type of PCOS called “Lean PCOS”. This reproductive endocrinologist told me that most doctors who do not specialize in women’s reproductive endocrinology may be unaware that this sub-type even exists! I still remember him writing it down on a prescription pad so I could show my general practitioner and endocrinologist. I was so relieved to finally have a diagnosis that made sense!
Life-Style Changes for the Lean Cyster
My diagnosis was an unexpected blessing in disguise. Six years ago, I never imagined the knowledge I would gain or the physical feats I’d accomplish because of it. Although I did not need to lose weight, I did need to improve my eating habits and begin a better exercise regimen to prevent future weight gain and combat the symptoms of lean PCOS.4 I began by simply getting on the treadmill while watching TV, learning how to use weights, and eating more vegetables, fruit, and less gluten (see https://pcosdiva.com/category/blog/diet for more information).
Slowly but surely, I learned to treat my body like a temple. I consulted with doctors, athletes, and read reputable websites such as PCOSDiva. Over time, I found a welcoming yoga community and a passion for running, which taught me to love and accept my body for what it is and what it can do. My journey with PCOS even motivated me to enroll in yoga teacher training and run a half marathon! Yet, these are merely outward signs of an inward change. Having a little-known sub-type of PCOS may not be the best thing that’s happened to me, but I’ve found the silver lining, and I encourage you to do the same.
Laura Dimler, M.A. is a developmental psychology doctoral candidate at the University of California, Riverside. Because of her own experiences with PCOS, she researches how puberty and hormones affect a person’s behavior. When she is not conducting research or teaching a class, you can find her running, doing yoga, baking, cooking, or spending time with her loved ones and rescue dog, Charlie.
1Polycystic Ovary Syndrome. American College of Obstetricians and Gynecologists. http://www.acog.org/~/media/For%20Patients/faq121.pdf?dmc=1&ts=20120510T1116545699. Updated March 2015. Accessed November 10, 2015.
3Dolfing JG, Strassen CM, van Haard PMM, Wolffenbuttel BHR, Schweitzer DH. Comparison of MRI-assessed body fat content between lean women with polycystic ovary syndrome (PCOS) and matched controls: less visceral fat with PCOS. Human Reproduction, 2011; 26(6): 1495-1500.
4Teede H, Deeks A, Moran L. Polycystic ovary syndrome: A complex condition with psychological, reproductive and metabolic manifestations that impacts on health across the lifespan. BMC Medicine, 2010; 8(41). doi:10.1186/1741-7015-8-41