A Mysterious Disease

Polycystic ovary syndrome (PCOS) is a hormone-related condition that affects millions of women, most without their knowledge. Estimates suggest that between 5 and 10 percent of the female reproductive population may have PCOS, and the number may actually be even higher among younger women, as infertility is the primary clue that leads to most diagnoses. In fact, PCOS is the most common cause of infertility.

PCOS is the most prevalent hormone imbalance in women under the age of 50, yet nearly 70% of cases are presumed to be undiagnosed. If left untreated, PCOS may lead to more far-reaching health concerns, such as diabetes, heart disease, and endometrial cancer.

What Exactly is PCOS?

Even though the name implies that the predominant symptom is ovarian cysts, PCOS—also known as polycystic ovary disease (PCOD) or Stein-Leventhal syndrome (after the doctors who discovered it more than 70 years ago)—is really a hormone imbalance, especially characterized by an overabundance of androgens and insulin resistance.

PCOS typically starts during adolescence (or even prepuberty), but may not be detected until women are in their late 20s or 30s because it takes a long time for symptoms to develop, and those symptoms vary widely from one woman to the next. The more obvious symptoms of PCOS include menstrual abnormalities, acne outbreaks, unwanted facial hair (hirsutism), unexplained weight gain and infertility.

The name “polycystic ovary syndrome” is misleading because you can have PCOS with or without ovarian cysts and, if you do have ovarian cysts, it does not necessarily mean that you have PCOS. The cysts associated with PCOS are actually eggs that do not get released from the ovary because of abnormal hormone levels (see What Goes Wrong? below). Tumors can also be associated with PCOS, but they are rare.

With the wide variations in the way this condition presents itself, there is much debate among medical professionals as to how to define and diagnose PCOS. The primary consensus seems to be that women with PCOS do not ovulate in a predictable manner, produce excessive quantities of androgens, particularly testosterone and/or DHEA, and they are insulin resistant.

What Are Androgens?

Androgens (from the Greek word andros, meaning masculine) are steroid hormones significant to our physical and sexual development. Androgens are secreted by the adrenal glands and the ovaries (in women), and are also produced by the nervous system, including nerve cells in the brain, spinal cord and peripheral nervous system (known as “neurosteroids”). They may also be produced by other tissues such as cells found in the liver, skin, and hair.

Androgens affect every aspect of our bodies in some way. They are necessary for the functioning of the liver and blood cells, nourishing the bones, and creating muscle mass. Because they are used for muscle development, and muscles are our fat burners, androgens are also critical to weight management. One interesting paradox is that some women with PCOS retain fluids and hold body fat, while others are quite slender.

Women with PCOS typically have elevated levels of androgens, specifically testosterone, androstenedione, dehydroepiandrosterone (DHEA) and DHEA-sulfate (DHEA-S). Their estrone level also tends to be high, but their estradiol level is usually within the normal range. Further complicating their hormone balance, PCOS sufferers typically also have low thyroid and high or low cortisol levels, as well as high insulin levels.

What are the Symptoms?

While some women with PCOS do develop cysts on their ovaries, the most prevalent indicators of PCOS and other androgen disorders generally fall into one of three categories: changes in appearance, menstrual abnormalities, and metabolic or systemic disorders.

Changes in appearance include:

  • Acne and skin problems
  • Hirsutism or excessive hair on the face, chest, abdomen, or other parts of the body
  • Alopecia or hair loss (also referred to as male-pattern baldness)
  • Unexplained weight gain or fluid retention

Menstrual abnormalities include:

  • Severe menstrual pain
  • Amenorrhea or absence of menstruation
  • Oligomenorrhea or occasional periods (possibly coupled with infertility if the woman has tried to become pregnant)

Metabolic or systemic disorders linked with PCOS include:

  • Infertility or reduced fertility
  • Diabetes or insulin resistance
  • Obesity
  • Hypertension
  • Heart disease
  • Hyperlipidemia (elevated “bad” cholesterol)
  • Endometrial cancer
  • Ovarian cancer
  • Breast cancer

For many women, PCOS is a life-long disease. Symptoms typically begin to appear by adolescence, persisting through the reproductive years and into menopause. Symptoms tend to cluster according to life stages, as follows:

  • Prepuberty: weight gain, early puberty or menarche, acne, high blood pressure
  • Adolescence: irregular periods, obesity, acne, hirsutism
  • Reproductive years: infertility, gestational diabetes, preeclampsia
  • Perimenopause: diabetes, obesity, stroke, heart disease, cancer

However, because sensitivities to excess androgen vary considerably, symptoms can vary dramatically from one woman to the next.

Unfortunately, many women who suffer from the symptoms of PCOS don’t seek medical treatment because they are too embarrassed, or because the symptoms seem trivial and unrelated. Many of the symptoms could be perceived as awkward phases of development, reactions to stress or lifestyle choices, or concerns with a less-than-perfect body. For those who do seek treatment, doctors often dismiss their complaints because they can be categorized as cosmetic (and therefore not covered by insurance), or as merely affecting a woman’s ability to get pregnant, or simply unexplained “female problems.”

One of the reasons that PCOS seems to be underdiagnosed is that many people (patients and doctors alike) do not consider aspects of our appearance to be important enough to address. However, as we all know, our appearance does affect our overall sense of well-being.

The mind/body relationship is a very important contributor to our health, and especially a woman’s reproductive health. Dr. Christiane Northrup notes that the cyclic release of hormones from the hypothalamus is different in women with PCOS. We do not yet know whether this difference is the cause or the result of ovarian problems, but it is clear that the mind and body are both affected.

What Causes PCOS?

The exact cause of PCOS is still a mystery. Research offers several possible theories, which may prove to be related, but there is no clear answer as of yet. One theory suggests that PCOS may be due to an endocrine system defect, affecting the hypothalamus and/or pituitary glands. In this scenario, the production of either gonadotropin-releasing hormone (GnRH) or luteinizing hormone (LH) is elevated. The ovaries then become overstimulated and result in androgen excess, which disrupts the normal menstrual cycle. (See What Goes Wrong?)

Dr. Jeffrey Dach explains that PCOS is the end result of a self-perpetuating cycle of not ovulating. No ovulation means no progesterone is produced, which continuously feeds a vicious cycle of no ovulation, and leads to increased testosterone production by the ovary.

According to Dr. Jorge Flechas, PCOS is a scar tissue disease caused by a lack of iodine. He suggests that low iodine levels are responsible for the production of cysts, nodules, growths, and scar tissue—no matter where they occur in the body.

Dr. John R. Lee’s theory points to xenobiotics, which are chemical compounds such as drugs, environmental pollutants, and carcinogens that are foreign to a living organism. Xenobiotics can disrupt hormone function, and can also alter the development of fetal tissue. During the development of a female embryo, between 500 and 800 thousand follicles are created, each containing an immature ovum. Dr. Lee reports that studies show “the creation of ovarian follicles during this embryo stage is exquisitely sensitive to the toxicity of xenobiotics.” While the mother who is exposed to the chemicals may be unaffected, her baby “is far more susceptible, and these chemicals may damage a female embryo’s ovarian follicles and make them dysfunctional; unable to complete ovulation or manufacture sufficient progesterone.” As noted earlier, this damage may not be apparent until after puberty, and may then exhibit a wide variety of symptoms.

Another theory is that insulin resistance may set off a chain reaction that throws the hormones out of balance. Medical research suggests that when insulin levels in the blood are high, the ovaries may be stimulated to produce more testosterone. However, there appears to be something unique about PCOS in that the excessively high insulin production is coupled with insulin resistance, independent of body weight.

Drs. Quintana and Dunaif hypothesize that “polycystic ovarian changes may be a prerequisite for the insulin effects because insulin does not alter androgen secretions in normal women.” They suggest that PCOS may be a major contributor to the number of women with non-insulin-dependent diabetes mellitus (NIDDM), both pre- and post-menopause.

Dr. Sara Gottfried concurs that there is an insulin connection with PCOS, noting that the risk of Type II diabetes rises by approximately 80% if cysts are present (whereas it increases by only 50% with just high androgen levels). In The Hormone Cure, she explains that high insulin levels cause the ovaries to produce excessive amounts of androgens, and also cause the liver to produce less SHBG, resulting in even more free testosterone. She also notes that insulin resistance increases aromatase, which converts testosterone to estradiol, thereby setting the stage for estrogen dominance and a lack of ovulation.

Dr. Gottfried suggests that genetics, chronic stress resulting in an excess of DHEA, and excess body fat (especially around the mid-section) may all contribute to PCOS, as well as obesity, which typically causes insulin levels to rise, in and of itself. Approximately 50 percent of the women with PCOS have excess body fat, and women with apple-shaped figures (i.e., a high hip-to-waist ratio) are more likely to have some ovarian dysfunction. Other research suggests that there is some type of synergistic relationship between impaired glucose tolerance and obesity in women with PCOS.

Researchers at The University of Chicago Medicine Center for Polycystic Ovary Syndrome are exploring a possible hereditary basis for PCOS and its association with diabetes. They report that approximately 30% of the women with PCOS will have an abnormal glucose tolerance test, and that 10% will be diabetic by the time they reach 40 years of age. In addition, Dr. Dunaif found that about 50 percent of the sisters of women with PCOS exhibit similar symptoms. These findings strongly suggest that if you or one of your sisters is diagnosed with PCOS, the other women in your immediate family should also be checked.

What Goes Wrong?

When functioning normally, the hypothalamus gland acts as a control center in the brain, monitoring hormone levels and regulating the menstrual cycle. During a normal menstrual cycle, the hypothalamus secretes gonadotropin-releasing hormone (GnRH), which stimulates the pituitary gland to release follicle-stimulating hormone (FSH) and luteinizing hormone (LH). In proper proportions, these hormones act on the ovaries to start producing estrogen (mostly estradiol) and stimulate the maturation of eggs.

In a normal ovary, a single egg is released each cycle. The first follicle that ovulates releases its egg into the fallopian tube and quickly changes into the corpus luteum. The corpus luteum produces a surge of progesterone, which simultaneously puts the uterine lining in its ripening phase and turns off further ovulation. If fertilization does not occur, the ovary stops its production of both estrogen and progesterone, and the sudden decrease in the concentrations of these hormones causes the blood-rich uterine lining to slough off, resulting in menstrual bleeding.

But what happens if a follicle does not release the egg for some reason?

If the ovary is not functioning properly and the egg is not released, the follicle may become a cyst and the normal progesterone surge does not occur. The lack of progesterone is detected by the hypothalamus, which continues to try to stimulate the ovary by increasing its production of GnRH, which in turn increases the pituitary production of LH.

An increase in pituitary hormones stimulates the ovary to produce more estrogen and androgens, which stimulates even more follicles to ovulate. If these additional follicles are also unable to release an egg and produce progesterone, the menstrual cycle is dominated by increased estrogen and androgen production, without progesterone, and multiple cysts may develop.

How is PCOS Diagnosed?

There is currently no single, simple test for diagnosing PCOS. Your healthcare practitioner may perform an endoscopic exam or use a diagnostic tool such as an ultrasound to determine if your ovaries are enlarged or have cysts. If something similar to “a string of pearls” is evident in the ultrasound, chances are that a diagnosis of PCOS is likely; if not, PCOS may or may not be present.

Hormone testing may also be used to determine if you have an elevated testosterone level, an elevated luteinizing hormone (LH) level, a normal to low follicle-stimulating hormone (FSH) level and elevated prolactin level. High LH tends to be a good marker for PCOS. For PCOS patients, Dr. Gottfried also suggests checking progesterone, glucose, fasting insulin, and the “hunger hormone” leptin.

During diagnosis, your healthcare practitioner will try to rule out other possible causes for your symptoms. Possibilities include Cushing’s syndrome (a complex hormone condition that is characterized by an excess of cortisol and affects many areas of the body) and other disorders associated with the pituitary or adrenal glands, such as congenital adrenal hyperplasia (CAH), which is an underlying genetic defect that can lead to androgen imbalances.

What Treatments Are Available?

The typical approach to treating PCOS has been some form of temporary “chemical castration” using oral contraceptives, androgen suppressors, synthetic estrogens, or other drugs that block hormone production, especially LH.

However, these conventional approaches simply suppress symptoms and perpetuate the problem—they do not address the underlying cause.
In fact, Drs. Quintana and Dunaif report that oral contraceptives “can produce substantial insulin resistance in normal women and may worsen the insulin resistance of those with [PCOS].”

Many practitioners, including Dr. Jeffrey Dach, Dr. Jerilynn Prior, Dr. Allen Warshowsky, and Dr. John Lee (among others), believe that a cyclic regimen of progesterone therapy is an obvious starting point to treating PCOS.

Dr. Lee treated his PCOS patients with a bioidentical progesterone supplement, in conjunction with attention to proper diet, adequate exercise, and stress management. Dr. Lee claimed that “If progesterone levels rise each month … as they are supposed to do, this maintains the normal synchronal pattern … and PCOS rarely, if ever, occurs.”

Bioidentical progesterone has also proven to be effective for inducing fertility when there appears to be some sort of ovulatory dysfunction. Evidence indicates that bioidentical progesterone therapy poses no risk, is likely to benefit those wishing to become pregnant, and may help maintain a pregnancy through the early months.

Another approach for treating PCOS is insulin-lowering medications. For women with PCOS, it is especially important to regulate insulin production such that the ovaries have a chance to function normally. Studies demonstrate a significant decline in ovarian androgen levels in PCOS patients while taking these medications.

An insulin-based treatment works best when coupled with a healthy diet and proper exercise. Many healthcare professionals recognize that metabolic aspects influence the reproductive and dermatologic health of their patients, especially patients with PCOS. For PCOS patients who are overweight, reducing their body weight by as little as 15% can significantly improve insulin sensitivity, restore ovulatory function, and reduce the effects of excess androgen.

In addition to progesterone therapy and insulin-based treatments, Dr. Gottfried believes that a more holistic approach is the key to successfully treating PCOS, including:

  • Decreasing stress by practicing yoga
  • Eating low glycemic and high fiber foods (fiber prevents recirculation of hormones from the gut and increases testosterone excretion)
  • Other dietary and lifestyle changes, such as omitting sugar, avoiding dairy products, eating more protein and using more omega 3 oils
  • Supplementing with zinc and vitamin D

Results from studies of a supplement called D-chiro-inositol (DCI) are promising for the treatment of PCOS and other conditions. Based on inositol (a nutrient found in a wide variety of fruits and vegetables, and known to affect nerve function), DCI may play a role in the cellular function that mediates the action of insulin.

Obviously, we still have much more to learn about PCOS, what causes it, and how to treat it. As more women become aware of PCOS and its symptoms and bring those concerns to their doctors and other healthcare practitioners, the medical profession will continue to enhance its understanding of PCOS.

What You Can Do Now

In the meantime, become more proactive about your own health and start practicing self-love with better eating habits, as well as proper exercise and sleep. Be advised of the symptoms and issues identified in this newsletter, and do your part to address health concerns that may contribute to PCOS, such as reducing stress and improving your diet.

As part of your normal health-related routine, monitor and document any changes to your appearance (especially your skin and hair), as well as any unexplained weight gain and menstrual irregularity. Speak with your healthcare practitioner about any and all symptoms that could be related to PCOS.

If you have an adolescent sister, daughter, or niece, pay special attention to changes in her that may be more than simply “awkward stages” of development. She may need the help of an informed advocate to get her on a path to proper treatment.

The information on this website is for informational purposes only and is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding any condition or medication. Do not disregard professional medical advice or delay in seeking it because of something you have read on this site.

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