PCOS: A Mysterious Disease
Polycystic ovary syndrome (PCOS) is a hormone-related condition that affects millions of women. This condition is also known as Stein-Leventhal syndrome (after the doctors who discovered it more than 80 years ago), Anovulatory Androgen Excess (AAE), or polycystic ovary disease. If left untreated, PCOS can lead to more far-reaching health concerns, such as diabetes, heart disease, and endometrial cancer.
Though “polycystic ovary syndrome” implies that the predominant symptom is ovarian cysts, PCOS is really a hormone imbalance characterized by an overabundance of androgens and resistance to insulin. PCOS is the most prevalent hormone imbalance in women under the age of 50. Estimates suggest that between 4-8% of the female reproductive population may have PCOS, yet most cases are presumed to be undiagnosed.
As mentioned previously, the name “polycystic ovary syndrome” is misleading because PCOS can occur with or without ovarian cysts. Even the presence of ovarian cysts does not necessarily mean that they are caused by PCOS. The cysts associated with PCOS are actually eggs that do not get released from the ovary because of abnormal hormone levels.
In most cases, PCOS starts during adolescence or even pre-puberty. Because the symptoms take a long time to develop, however, it may not be detected until women are in their late 20s or 30s.
Infertility is closely connected to PCOS: infertility is the primary clue that leads to most diagnoses of PCOS and PCOS is one of the most common causes of infertility. In addition to infertility, the more obvious symptoms of PCOS include menstrual abnormalities, acne, unwanted facial hair, and unexplained weight gain. Symptoms vary widely from one woman to the next; for instance, some women with PCOS retain fluids and hold body fat, whereas others are slender. Tumors and increased risk of cancers may also be associated with PCOS, but they are rare.
Considering the myriad symptoms of PCOS, medical professionals still debate how to define and diagnose it. 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 dehydroepiandrosterone (DHEA)
- Are insulin-resistant
Dr. Jerilynn Prior asserts that the most common cause of PCOS is not actually cysts on the ovaries, but rather ovulation dysfunction and/or disturbance and subsequent lack of progesterone.
What are Androgens?
Androgens are steroid hormones vital to physical and sexual development. They are secreted by the adrenal glands and are also produced by the nervous system, including nerve cells in the brain, spinal cord, and the peripheral nervous system. Other tissues may also produce androgens, such as cells found in the liver, skin, and hair, and by the ovaries in women.
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 burn fat—androgens are critical to weight management.
Patients with PCOS tend to have elevated levels of androgens. Imbalances of other hormones are also common, further contributing to PCOS symptoms:
- High levels of androgens, specifically testosterone, androstenedione, DHEA, and DHEA-sulfate (DHEA-S)
- High estrone levels, though their estradiol level is usually within the normal range
- Low thyroid levels
- High or low cortisol levels
- High insulin levels
What are the Symptoms?
For many women, PCOS is a lifelong disease, with symptoms appearing in adolescence and persisting through the reproductive years and into menopause. While some women with PCOS may develop cysts on their ovaries as the name suggests, the most prevalent indicators of PCOS and other androgen disorders fall into one of three general categories: changes in appearance, menstrual abnormalities, and metabolic or systemic disorders.
Examples of Changes in Appearance
- Acne and skin problems
- Hirsutism (excessive hair on the face, chest, abdomen, and other parts of the body)
- Unexplained weight gain or fluid retention
Examples of Menstrual Abnormalities
- Severe menstrual pain
- Amenorrhea (absence of menstruation)
- Oligomenorrhea (infrequent periods, possibly coupled with infertility if the woman has tried and been unable to become pregnant)
Examples of Metabolic or Systemic Disorders
- Infertility or reduced fertility
- Diabetes or insulin resistance
- Heart disease
- Hyperlipidemia (elevated cholesterol)
- Endometrial cancer
- Ovarian cancer
- Breast cancer
Because sensitivities to excess androgen vary considerably, symptoms can differ dramatically from one woman to the next. In general, symptoms cluster according to life stages:
- Pre-puberty: 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
Unfortunately, many women who suffer from the symptoms of PCOS don’t seek medical treatment. They may be embarrassed, or the symptoms may seem trivial and unrelated. Many of the symptoms might be perceived as awkward phases of development, reactions to stress or lifestyle choices, or concerns about imperfect physical appearance.
For those who do seek treatment, doctors often misinterpret their symptoms as being connected to some other cause. Changes in appearance may be categorized as cosmetic (and therefore not covered by insurance). For instance, some women may remedy excess hair with laser treatments rather than consulting their physician.
Possible Causes of PCOS
As of this writing, the exact cause of PCOS is still a mystery. However, several theories have been suggested by various researchers:
Defects in the Endocrine System
One theory suggests that PCOS may be due to a defect in the endocrine system, affecting the hypothalamus and/or the pituitary glands. In this scenario, the production of either gonadotropin-releasing hormone (GnRH) or luteinizing hormone (LH) is elevated. Dr. Prior concludes that it is not simply high levels of LH, but the rate of its pulsing that has gone awry. This increased rate overstimulates the ovaries and results in excess androgen production, which disrupts the normal menstruation cycle.
Lack of Ovulation
Dr. Jeffrey Dach suggests that PCOS results from the body’s failure to ovulate. Without ovulation, progesterone is not produced. Because ovulation cannot take place without progesterone, this perpetuates a cycle, as ovulation will not occur without progesterone and leads to increased testosterone production by the ovaries.
Scar Tissue from Iodine Deficiency
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. Iodine deficiency is the cause of such diseased tissues no matter where they occur in the body.
Environmental and Chemical Exposures
Dr. John R. Lee’s theory points to xenobiotics: 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.” One example of harmful chemical exposure is Bisphenol A (BPA), which is found everywhere from plastics to the lining of canned foods and even paper receipts. BPA may alter estrogen receptor proteins, leading to ovarian difficulties.
While a pregnant woman exposed to such 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.” This damage may not be apparent until after puberty, and even then may exhibit in 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, PCOS appears to be unique in that, independent of body weight, excessive insulin production is coupled with insulin resistance.
Dr. Sara Gottfried thinks that PCOS is connected to insulin, noting that the risk of Type II diabetes rises by approximately 80% if cysts are present (whereas it increases by only 50% with high androgen levels alone). 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 sex hormone binding globulin (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 lack of ovulation.
Genetics and Other Possible Causes
Dr. Gottfried suggests that genetics, chronic stress resulting in an excess of DHEA, and excess body fat (especially around the midsection) may all contribute to PCOS. Another possible cause is obesity, which itself typically causes insulin levels to rise. Approximately 50% of women with PCOS have excess body fat, and women with a high waist-to-hip ratio (i.e., apple-shaped figures as opposed to pear-shaped figures) are more likely to have some ovarian dysfunction.
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?
Currently, there is no single 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. A diagnosis of PCOS is more likely if the ultrasound shows something similar to “a string of pearls” although the absence of this does not discount the possibility of PCOS altogether.
Hormone testing may also be used to determine hormone levels that may be indicators of PCOS, including:
- Elevated testosterone
- Elevated LH
- Normal to low follicle-stimulating hormone (FSH)
- Elevated prolactin
High LH seems to be a good marker for PCOS. Dr. Gottfried also suggests that PCOS patients have their levels of progesterone, glucose, fasting insulin, and leptin checked.
During diagnosis, your healthcare practitioner will try to rule out other possible causes for your symptoms. One possibility is Cushing’s syndrome, a complex hormone condition characterized by excess cortisol that affects many areas of the body. Other potential diagnoses are disorders associated with the pituitary or adrenal glands, such as congenital adrenal hyperplasia (CAH), which is a genetic defect that can also lead to androgen imbalances.
What Treatments are Available?
Often PCOS has been treated with oral contraceptives, androgen suppressors, synthetic estrogens, or other drugs that block hormone production, especially the production of LH. These conventional approaches suppress the symptoms but do not address the underlying cause. Instead of blocking hormone production, many practitioners–including Drs. John Lee, Jeffrey Dach, Jerilynn Prior, and Allen Washowsky–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 proper diet, adequate exercise, and stress management. He 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.” (For more information, see our Connections eBook, A Lifetime of Progesterone.)
Another approach for treating PCOS is with insulin-lowering medications. For women with PCOS, it is especially important to regulate insulin production so that ovaries have a chance to function normally. Studies demonstrate a significant decline in ovarian androgen levels in PCOS patients while taking these medications.
Dr. Jason Fung proposes that the underlying mechanism of PCOS is high insulin levels or insulin resistance. Patients may find it easier to manage insulin levels by incorporating periodic fasting into their lifestyle. Dr. Fung discusses the details of various fasting plans and their potential health benefits in his book The Complete Guide to Fasting.
Insulin-based treatments work 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 those with PCOS. For PCOS patients that are overweight, reducing their body weight by as little as 15% may 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 holistic approach is the key to successfully treating PCOS. This approach includes lifestyle and dietary changes such as:
- Decreasing stress by practicing yoga
- Eating low glycemic foods
- Eating high fiber foods (as fiber prevents recirculation of hormones from the gut as well as increases testosterone excretion)
- Omitting sugar
- Avoiding dairy products
- Eating more protein
- Using more omega-3 oils
- Supplementing with zinc and vitamin D
Studies of a supplement called D-chiro-inositol (DCI) have yielded promising results in the treatment of PCOS. Inositol is a nutrient found in a wide variety of fruits and vegetables and is known to affect nerve function. Because it is based on inositol, DCI may play a role in the cellular function that mediates the action of insulin.
A similar nutrient to DCI is myo-inositol. A study conducted by Dr. Alfonsa Pizzo et al. compared the two in women with PCOS, and found that “myo-inositol showed the most marked effect on the metabolic profile, whereas D-chiro-inositol reduced hyperandrogenism better.” Therefore, while DCI may help PCOS symptoms related to the metabolic hormone insulin, other symptoms related to the androgenic hormone testosterone may be better regulated by myo-inositol.
PCOS in Men
There are different theories as to the cause of PCOS, and not all of them involve the ovaries. While PCOS is practically an epidemic in women, there is evidence that similar imbalances manifest in young men. According to Dr. Matthew Cavaiola, if PCOS is not caused by a defect in the ovaries, men can also suffer from this condition. Symptoms of PCOS in men include:
- Early onset of male pattern baldness
- Excessive body hair
- High levels of testosterone and dihydrotestosterone
- Insulin resistance
- These symptoms are often considered normal or inevitable body changes, but as with women, PCOS in men serves as a clue that their health is compromised. Even if PCOS symptoms are not severe, they may indicate more serious underlying conditions or health concerns. For instance, men with PCOS have an increased risk of diabetes and cardiovascular disease.
During the midlife changes of perimenopause, menopause, and andropause, we pay attention to the hormonal decline and how it negatively affects health and wellbeing. However, the prevalence of PCOS in young men and women is evidence that hormone imbalances can occur at any age. Fortunately, solutions are available to prevent PCOS from becoming an inevitable or lifelong condition.
While there is currently no cure for PCOS, there are several measures that can be taken to prevent or curtail its effects, starting with:
- Adopting healthy lifestyle habits including eating, exercise, and sleeping habits
- Addressing health concerns that may contribute to PCOS, such as reducing stress
- Monitoring and documenting any changes in appearance (especially skin and hair), as well as any unexplained weight gain or menstrual irregularities
- Speaking with healthcare practitioners about symptoms that might be related to PCOS
We have much to learn about PCOS, what causes it, and how to treat it. As men and women become aware of the symptoms—and bring those concerns to their doctors and other healthcare practitioners—the medical profession will continue increasing its understanding of PCOS. In the meantime, it’s possible for patients to become more proactive about their health.
Connections is a publication of Women’s International Pharmacy, which is dedicated to the education and management of PMS, menopause, infertility, postpartum depression, and other hormone-related conditions and therapies.
This publication is distributed with the understanding that it does not constitute medical advice for individual problems. Although this material is intended to be accurate, proper medical advice should be sought from a competent healthcare professional.
Publisher: Constance Kindschi Hegerfeld, Executive VP, Women’s International Pharmacy
Co-Editors: Michelle Violi, PharmD., Tami Haas and Laura Strommen; Women’s International Pharmacy
Writer: Carol Petersen, RPh, CNP; Women’s International Pharmacy
Illustrator: Amelia Janes, Midwest Educational Graphics
Copyright © Women’s International Pharmacy. This newsletter may be printed and photocopied for educational purposes, provided that your copy(s) include full copyright and contact information.
I post this article because PCOS-like symptoms were my first symptoms of Lyme/MSIDS: https://madisonarealymesupportgroup.com/2017/02/24/pcos-lyme-my-story/
While I was never diagnosed with PCOS it demonstrates that Lyme can go anywhere in the body and cause symptoms.
Scheduled to undergo surgery for an epigastric hernia, a MRI showed 2 deflating cysts. The pain was unbelievable, that I suffered with for months. After this, my knee swelled up twice it’s normal size, was red and hot to the touch, and I developed a fever in the middle of January in Wisconsin along with seeing flashing lights along with heart palpitations, and other bizarre symptoms. I was told by the doctor I had “washer woman’s knees” from washing floors. Problem is I use a bucket and mop….it also doesn’t explain the accompanying fever.
I’m convinced I never got Lyme/MSIDS from a tick bite but directly from my husband. Initial symptoms all originated in the pelvic region and metastasized from there.
Since the CDC states outright Lyme is not a STD, little to no work has been done in this area to the demise of patients.
Key Quote: “The presence of live spirochetes in a genital lesion strongly suggests that sexual transmission of Lyme disease occurs,” said Middelveen. “We need to do more research to determine the risk of sexual transmission of this syphilis-like organism.”