by Amy Medling, founder of PCOS Diva
I am frequently asked, “What is PCOS?”
Polycystic Ovarian Syndrome (PCOS) is one of the most common endocrine disorders found in women, affecting approximately 5-10% of women worldwide, with less than 50% of them diagnosed.[i] The syndrome is present throughout a woman’s life from puberty through post-menopause and affects women of all races and ethnic groups.[ii] Women with PCOS wrestle with an array of possible symptoms including obesity, irregular menstrual cycles, infertility, depression, acne, hair loss, and more.
PCOS is unquestionably under-diagnosed. The primary reason is that women do not report their symptoms. They may be embarrassed to speak openly with their doctor, or they may not even recognize their symptoms as unusual. For example, a typical PCOS woman may think, “All of my aunts have thinning hair and are overweight. It just runs in my family.” That may be true- likely because PCOS runs in her family. Often, women may not recognize that all of their symptoms have a common cause.
To further complicate things, doctors often lack knowledge about PCOS and attempt to treat each symptom separately, or they may attribute it to other lifestyle factors such as stress or obesity. On the other hand, women with lean PCOS, whose body type runs on the thin side, are often not diagnosed with PCOS because doctors associate PCOS with being overweight.
Finally, Polycystic Ovarian Syndrome has a name problem. Approximately 20% of women who do not have PCOS have cysts on their ovaries. Similarly, about 30% of women that do have PCOS have no cysts.[iii]
In an effort to better define PCOS and facilitate diagnosis and treatment, a definition was agreed upon between the European Society for Human Reproduction and the American Society for Reproductive Medicine. Diagnosis in now largely based upon these new symptoms dubbed the “Rotterdam” criteria.[iv] These criteria include the original National Institutes of Health[v] and EAE-PCOS Society diagnostic criteria. To be diagnosed with PCOS, a woman must present two out of the three criteria:
- Oligo (anovulation)
- Hyperandrogenism (clinical and/or biochemical)
- Polycystic Ovaries (on an ultrasound)
Even with these criteria in place, diagnosis can be tricky. Characteristics can vary widely based life stage, genotype, ethnicity, and environmental and lifestyle factors such as body weight and eating habits. Birth control pills may also interfere with test results because they lower androgens. With this in mind, physicians must eliminate other possible causes of a woman’s symptoms. Developing a diagnosis is also an opportunity to screen for cardiovascular risks that may develop or worsen with time.[vi] If detected early, prevention and treatment can save a life.
Practically speaking, PCOS has three main hallmarks: obesity, irregular menstruation/fertility issues, and hair/skin problems. It is unusual to exhibit every symptom of PCOS. Most women living with PCOS have some combination of symptoms. You may be slim, but have irregular menstruation, or you may have skin problems and polycystic ovaries, but not hirsutism (excessive hair growth in women on parts of the body where hair does not normally occur). To further complicate the issue, many symptoms cascade from others. For example, cardiovascular disease may result from insulin resistance. It is a combination of symptoms that truly define an individual woman’s PCOS.
Ask your doctor to test you for PCOS if you have any of these symptoms:
- Easy weight gain[i],[ii] and/or Obesity (55-80%)[iii]
- Fertility Issues[iv]
- Acne (40-60%)[v]
- Cardiovascular issues
- Polycystic ovaries (20-39%)[vi]
- Type 2 Diabetes
- Depression (28-64%)[vii],[viii],[ix]
- Anxiety (34-57%)19, 20, 21
- Poor body image, eating disorders (21%)
- Sexual dysfunction
- Hyperandrogenism (60-80%)
- High levels of androgens[xvi], 23
- High levels of insulin/insulin resistance (30-50%) 22,[xvii],[xviii]
- Irregular menstruation (75-80%)[xix]
- Hirsutism (excessive hair growth) (70%)
- Skin Tags
- Sleep Apnea (8%)[xx]
- Gray-White Breast Discharge (8-10%)[xxi]
- Scalp Hair Loss (40-70%)[xxii]
- Darkening Skin areas (acanthosis nigricans)- particularly on nape of neck (10%)[xxiii]
- Pelvic pain
- Hidradenitis Suppurativa- painful boil-like abscesses in the groin
Far reaching health implications such as increased risk of cardiovascular disease, endometrial cancer, and diabetes make these already stressful symptoms even more daunting. If you are a woman struggling with PCOS, I have good news- there is hope! While you cannot cure PCOS, you can, “render it almost inactive by losing weight through healthful eating and moderate exercise.” [xxiv]
Lifestyle change is key for women with PCOS whether they are overweight or not. We need to be thoughtful about the foods we use to fuel our bodies, the exercise we choose, the toxins we are exposed to, and, just as importantly, the emotional and mental care we take with ourselves. Dr. Samuel Thatcher, an early pioneer in PCOS research and treatment of PCOS, is quoted as saying, “A more holistic approach to PCOS is certainly warranted and can have a significant effect in altering quality of life.”[xxv]
I often hear from women like me with PCOS who are frustrated and have lost all hope because the only solution their doctors offer is to lose weight, take a pill and live with their symptoms. In response, I developed a proven protocol of supplements, diet and lifestyle programs that offer women the tools they need to gain control of their PCOS so that they can regain their fertility, femininity, health and happiness.
PCOS Diva.com is an online resource for women with PCOS which embraces a holistic approach. As the founder of PCOS Diva, I have worked with thousands of women, teaching them how to make sustainable lifestyle changes, which in turn positively impacts their health and lessens PCOS symptoms. Many of my clients don’t know where to begin. I believe education and awareness about this syndrome is the starting point to healing; knowledge is power.
For more information about PCOS and your next steps, download my FREE PCOS 101 Resource Guide. I developed it especially for women with PCOS and their advocates to use in order to educate, empower, and advocate for themselves when working to get the care they need and deserve.
Amy Medling, author of Healing PCOS and certified health coach, specializes in working with women with Polycystic Ovary Syndrome, (PCOS), who are frustrated and have lost all hope when the only solution their doctors offer is to lose weight, take a pill, and live with their symptoms. In response, Amy founded PCOS Diva and developed a proven protocol of supplements, diet, and lifestyle programs that offer women tools to help gain control of their PCOS and regain their fertility, femininity, health, and happiness.
[i] PCOS Foundation, “PCOS Support Groups,” http://pcosfoundation.org/support-groups?gclid=CJTq24yVprwCFURnOgod_C4ASA, (accessed Jan 2014).
[ii] Thatcher, Samuel, PCOS: The Hidden Epidemic, Indianapolis, Perspectives Press, 2000, 320.
[iii] Boss, Angela and Weidman, Evelina, Living with PCOS, Omaha, Addicus Books, 2001, 3.
[iv] Rotterdam ESHRE/ASRM- Sponsored PCOS Consensus Workshop Group. Revised 2003 Consensus on diagnostic Criteria and Lon-Term Health Risks Related to Polycystic Ovarian Syndrome. Fertility and Sterility, 2004; 81, 19.
[v] Zawadaki, R and Dockerty M, Diagnostic Criteria for Polycystic Ovarian Syndrome: Towards a Rational Approach. In: Dunaif A, Given JR, Jaseltine F, Merriam GR, editors. Current Issues in Endocrinology and Metabolism: Polycystic Ovarian Syndrome. Boston: Blackwell Scientific, 1992: 337.
[vi] Evidence-based guideline for the assessment and management of polycystic ovary syndrome. Jean Hailes Foundation for Women’s Health on behalf of the PCOS Australian Alliance; Melbourne, 2011, S69.
[vii] Glueck C., Dharashivkar S., Wang P., Obesity and Extreme Obesity, Manifest by ages 20-24 Years, Continuing Through 32-41 Years in Women, Should Alert Physicians to the Diagnostic Likelihood of Polycystic Ovary Syndrome as a Reversible Underlying Endocrinopathy, European Journal of Obstetrics and Gynecological Reproduction and Biology, 2005, 122, 206.
[viii] Teede H., Deeks A, Gibson-Helm M, Body Mass Index as a Predictor of Polycystic Ovarian Syndrome Risk: Results of a Longitudinal Cohort Study, Endocrine Society Annual Meeting, 2010, June 19-22, San Diego, CA.
[ix] Futterweit, A Patient’s Guide, 19.
[x] Thatcher, Hidden Epidemic, 12.
[xi] Futterweit, A Patient’s Guide, 17.
[xii] Thatcher, PCOS 101
[xiii] Deeks A., Gibson-Helm M, Teede H, Anxiety and Depression in a Polycystic Ovarian Syndrome: A Comprehensive Investigation, Fertility and Sterility, 2010, 93, 2421.
[xiv][xiv] Bhattacharya S, Jha A., Prevalence and Risk of Depressive Disorders in Women with Polycystic Ovarian Syndrome (PCOS), Fertility and Sterility, 2010, 94, 357.
[xv] Laggari V, Diareme S, Christogiorgos S, Anxiety and Depression in Adolescents with Polycystic Ovarian Syndrome and Mayer- Rokitansky-Kuster-Hauser Syndrome, Journal of Psychosomatic Obstertics and Gynecology, 2009, 30, 83.
[xvi]Rachon D, H. Teede, Ovarian Function and Obesity- Interrelationship, Impact on Women’s Reproductive Lifespan and Treatment Options, Molecular and Cellular Endocrinology, 2010, 316, 172.
[xvii] P. Acien, F. Quereda, P. Matallin, Insulin, Androgens, and Obesity in Women With and Without Polycystic Ovarian Syndrome : A Heterogeneous Group of Disorders, Fertility and Sterility, 1999, 72, 32.
[xviii] Nancy Dunne and Bill Slater, The Natural Diet Solution for PCOS and Infertility, Seattle, Health Solutions Publishing, 2005, 28.
[xix] Futterweit, A Patient’s Guide, 11.
[xx] Futterweit, A Patient’s Guide, 21.
[xxi] Futterweit, A Patient’s Guide, 20.
[xxii] Futterweit, A Patient’s Guide, 15.
[xxiii] Futterweit, A Patient’s Guide, 19.
[xxiv] Futterweit, Walter, A Patient’s Guide to PCOS- Understanding-and Reversing-Polycystic Ovarian Syndrome, New York, Henry Holt, 2006, xvii.
[xxv] Thatcher, Samuel, PCOS 101, http://memberfiles.freewebs.com/26/91/38059126/documents/2005%20HS%20and%20PCOS%20Thatcher%20MD.pdf.