The Forgotten Cyster: Lean PCOS

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 DimlerLaura 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.

 

 

References:

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.

2Williams RM, Ong KK, & Dunger DB. Polycystic ovarian syndrome during puberty and adolescence. Molecular and Cellular Endocrinology. 2013; 373(1-2): 61-67.

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

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13 responses to “The Forgotten Cyster: Lean PCOS”

  1. Thank you for sharing. I also have skinny PCOS – and didn’t know for years. I continually went to different doctors and received no answers. At one point my GP told me ‘It looks like you have PCOS but you’re not overweight so that can’t be it.’ It was so frustrating not knowing what to do to help. Thank you also for sharing about cutting out gluten. I live in a pretty gluten-free friendly neighborhood but because I’m not celiac a lot of people think I’m just being an uninformed over-zealous health nut. Having to explain each time that I have PCOS can be annoying. It’s just good to know that I’m not the only one. Thank you. 🙂

    • I am so happy that this information and my story resonates with you and helps you to know that you’re not alone!

  2. We are not alone. I’m Lean PCOS as well. After using diet and supplyments, my weight is even lower. I believe most of us have high LH compare to other PCOS. I haven’t found the best way to get my period regular. But working on it, and that’s my new year wish

  3. I have lean PCOS as well and the MTHFR genetic defect where I cannot methylate vitamin B. I have a great specialist who has helped me balance my hormones with methylated B vitamins. Unfortunately I now have a VERY large cyst and a new smaller cyst on my left ovary. My A1c is 4.7 and my testosterone always tests low. My OB GYN is insisting I go back on BC (i’m 45) or have surgery to remove the cysts. I am VERY FRUSTRATED. My last hope seems to be trying Ovasitol? my hormone specialist did not want me to due to low testosterone and no signs of insulin resistance. I dont know what else to do. BC did not agree with me once I turned 40. I had metabolic syndrome until I went off the pill, so I do NOT want to go back on just to shut down my ovaries. Strangely my right ovary seems to be functioning just fine. Has any other lean PCOS gal tried the Ovasitol? I cant figure out if it is to help our type of PCOS or not. Thanks!

  4. Thank you for sharing your story. I was just diagnosed with PCOS at 34 after years of trying to get some answers from doctors. I am 5’9″ and 128 lbs. All of the information I have found is to lose weight, which I obviously do not need to do.

    • Hi Courtney – I know EXACTLY how you feel! That’s why I wrote this article because if there wasn’t much information out there, I wanted to share what I know/have found with other ‘Lean Cysters’! I hope this helped you know you are NOT alone!

  5. Thank you for sharing your story. I have “lean” PCOS as well. I’m 5’6″ and 125lbs. I eat healthy, I work out twice a week, I cannot take any traditional PCOS medications as I do not react well to them (Birth Control, Metformin, etc). Miraculously I was able to conceive naturally (unexpectedly), but my PCOS has gotten severely worse since the birth of my son 2 years ago. I have been hospitalized 3x for torsioned or rupturing cysts. I am so tired of living like this!!

    Have you tried taking any INOSITOL supplements? I hear so many good things about them, but I’m wondering if the results are the same for us “lean” pcos ladies?

    • Hi Samantha! I haven’t tried any Inositol supplements but feel like I’ve tried a lot of other supplements. Some have worked and some haven’t. Feel free to e-mail me at lauramdimler@gmail.com to chat some more!

  6. I have lean PCOS as well. It took 6 years for me to get diagnosed, as I competed in track and field in college, and doctors continually sited my athleticism as the source of all my problems, despite the fact that I was in my 20s and I had a BMI of 19, which should have been high enough to sustain a menstrual cycle.
    I eventually went to the Mayo Clinic in Rochester, MN, to a dermatologist. I too, was on Accutane twice in high school, with no lasting results. In less than 2 minutes, she diagnosed me with PCOS and sent me to a reproductive endocrinologist, who confirmed it with blood tests and an ultrasound. She prescribed the BC pill. I don’t handle the BCP well, and I had already tried it for acne, starting in 8th grade. I went through several brands (at one point I gathered all of my medical records and counted – I had tried 9 or 11 different BCPs!). At that point, I began going to a Catholic doctor who had trained at regular medical school and then at the Pope Paul the VI Institute in Omaha, for the sole reason that I KNEW he would never prescribe me birth control pills. I was Lutheran at the time. They don’t care what religion you are.
    At any rate, it was far and away the best decision I ever made regarding my medical care. I highly recommend it – it is called the Creighton method, or NaPro technology. What my doctor did for me was prescribe 10 days of progesterone, taken at a specific time in my cycle, as well as dietary changes, and stress management. It was hard, and it took a couple of years to get everything straightened around and calmed down, but I can now go out in public without makeup! – something I never thought would happen. I also get a cycle every month. I recently got married and we’re trying for a baby. I too am curious about the Ovasitol supplements. We’ve only been trying for 3 months. Has anyone had a bad experience with it?
    To sum, if you’re desperate like I was and are willing to try something different (and effective, IMO), you can read about the methods and find a doctor like mine at this site: http://www.unleashingthepower.info
    It changed my life. I hope you all find help in good ways, too!

  7. I am 5’6″ and weigh 50 kg..I never got period although my age is 23 yrs.. I was diagnosed with PCOS as there were cysts in my ovaries..and imbalance in hormone LH.