The name of this syndrome distracts from the true issue and ignites fear with the words ‘ovarian cysts’. Oftentimes, women who are diagnosed with Polycystic Ovarian Syndrome (PCOS) don’t realize that this problem is really about their hormones. Not their ovaries. At the time of diagnosis, many may think, “dear god, multiple CYSTS on my ovaries? I need surgery! This must be why my cycles are so irregular. Why I’ve been feeling so off”. Though this reaction is perfectly normal, it is ignoring that true, underlying cause of everything -- the cysts, the irregular periods, the weight gain -- is hormone imbalance. The cysts are just a symptom. And what’s more, a benign (non-dangerous) symptom.
The truth is that PCOS, otherwise known as Stein-Leventhal Disease, is one of the most common hormonal endocrine disorders in women and it is often known as the “silent killer”. This name comes from its difficult diagnosis due to variations between every woman and because no single test will lead to a diagnosis. For example, while weight gain is a common symptom of PCOS, some women may remain thin and fit -- about 20% -- which makes diagnosis more difficult.
It is estimated that up to 1 in 10 women and girls are affected by PCOS. Though the cause is not fully known, there likely genetic roots. You are 50% more likely to have PCOS if your mother has PCOS, however, it may be possible for the syndrome to come from your father’s side.
PCOS is a syndrome diagnosed as early as 1721 but was first classically observed in 1935. In the early 20th century, doctors were not able to draw complicated blood labs. What they were able to do was surgery. Women would come in complaining of irregular periods, menstrual pain, excess hair, and more. Quite obviously, it would seem that this problem would stem from the woman’s reproductive parts themselves. Time for surgery! What they would then discover is that women with these symptoms would usually have a string of small cysts, called “string of pearls”, that surround the ovaries. This was determined to be the cause of their problems and boom, the name PCOS was developed.
Many years later, once hormones levels were able to be investigated via blood, it was determined that the true cause of their symptoms was a hormone imbalance and that these cysts were simply a byproduct of this imbalance. But, the name PCOS had already been set in place. So the name stuck, and it remains today.
Still today, many focus on these tiny cysts. I suspect the reason for this is that it provides some sort of physical manifestation of the problems these women have been dealing with for years on end. Without addressing the hormone imbalance, however, many serious medical problems can arise. It is absolutely essential that those diagnosed with PCOS work on balancing their hormones in addition to managing their irregular cycles.
At Higher Risk due to PCOS
When hormones are not balanced, PCOS women are at a very high risk for other serious and deadly conditions such as:
- Diabetes (more than half of PCOS women will be diagnosed before 40)
- Endometrial cancer (3 times higher and at a younger age due to reduced shedding of the uterine lining)
- Infertility (PCOS is the most common caues of female infertility)
- Cardiovascular disease (heart attack risk is 4-7 times higher)
- Liver disease
- Metabolic syndrome (high blood pressure, high blood fats, overweight which often lead to diabetes and/or heart disease)
- Pregnancy complications: gestational diabetes, gestational hypertension, miscarriage
Notice that PCOS is called a syndrome. Another term for a syndrome is a spectrum. In other words, women experience symptoms differently, or along a spectrum from best to worst. Imagine this spectrum as a gradient from white to black with varying shades of grey between. Let’s have white represent the least amount of symptoms with black representing the most. A woman with PCOS can fall anywhere on this spectrum and while one woman may only be experiencing irregular menstrual cycles and acne, another may be experiencing all those plus insulin resistance, weight gain, and infertility. This variation in symptoms shows why many doctors may not diagnose PCOS right away.
PCOS may begin at ages as young as 11, but frequently, it is not diagnosed until a woman reaches her 20s or 30s. This gives your hormones plenty of time to wreak havoc on your body.
Symptoms a PCOS woman or girl may experience are:
- Irregular menstrual cycles
- Infrequent, absent, or heavy periods
- Weight gain or obesity
- Difficulty losing weight
- Extra hair growth (Hirsutism): face, body, near nipples
- Thinning of hair, especially around temples
- Pelvic pain
- Acne, oily skin
- Darkened skin around neck, underarms, thighs, breasts
- Skin tags
- Multiple small cysts on the ovaries
- Anxiety or depression
- Sleep apnea: when breathing temporarily stops during sleep
Sadly, many doctors are not sufficiently diagnosing or looking or signs of PCOS. Signs of PCOS may not be very clear, or you and your doctor may assume that symptoms are unrelated. In fact, less than 50% of women with PCOS are actually diagnosed. This is especially concerning when PCOS is the cause of 70% of female infertility and 40% of diabetes or glucose intolerance. What makes a diagnosis even more difficult is that every woman is different in her symptoms, so it is not always immediately clear whether someone has PCOS or not.
If you have one or more of the symptoms above, you may have PCOS. Additionally, sometimes symptoms are not always obvious. The state of your health, diet, physical activity level, use of hormonal birth control, and more will interfere with the presentation of symptoms. It’s also necessary that when blood tests are drawn, you are not currently using birth control pills. They add and regulate hormones and thus invalidate some PCOS lab work.
To diagnose PCOS, your doctor should order all of the following test to confirm. It may seem like a lot just to diagnose this common syndrome, but each test has its own importance.
- Physical examination: At a gynecologic or physician visit, your doctor will also assess your weight and BMI, look for any hair growth or skin changes, and ask relevant medical history questions.
- Pelvic Ultrasound: this is done to try to detect multiple ovarian cysts. You may have PCOS even if you do not exhibit typical cysts or lack them completely. Furthermore, you may also be diagnosed with PCOS even if other symptoms are not present.
- Endometrial Biopsy (Depending on symptoms): If you have been experiencing many years of irregular and absent periods, your endometrium, or uterine lining, may be built up. As a result of this, it becomes very thick. An endometrial biopsy is done to assure no cancerous cell changes have begun in a thickened endometrium.
Comprehensive Metabolic Panel
Fasting blood sugar: indicator of diabetes
Liver function tests: checking for fatty liver, a condition in some PCOS women
Creatinine: to determine if you are a candidate for the medication, Metformin
Fasting lipids (fats): commonly high in women with PCOS
Hemoglobin A1C: long-term blood sugar indicator
Fasting Insulin: arguably the most important hormone to draw for PCOS
Follicle Stimulating Hormone (FSH): balance between this and LH is an indicator of PCOS
Luteinizing Hormone (LH): high levels cause premature, incomplete ovulation and increased androgen levels
Thyroid Stimulating Hormone (TSH): rule out cycle irregularity is not due to hypothyroidism
Estradiol (Estrogen): female hormone
17-hydroxyprogesterone: rule out issue with the adrenal glands
Free and total testosterone: high levels may indicate PCOS
DHEA (an androgen): high levels may indicate PCOS
Prolactin: high levels cause irregular periods. Very high levels might be due to pituitary adenoma
If you suspect that you have PCOS due to symptoms or and ultrasound showing cysts, it is very important that your doctor be complete in the diagnosis by completing these labs and tests. It’s very common for a doctor to suspect or even diagnose PCOS without all these labs/tests being conducted. The importance of this is that it allows your gynecologist to make a complete diagnosis, understand at what stage of PCOS you are in, and most importantly, the best way to help you.
What's happening in my body?
To quickly sum up all the interactions in your body, here’s a concise list:
- Female hormone imbalances cause improper ovulation
- Improper ovulation leads to the development of the small benign cysts
- Improper ovulation is the cause of irregular or missed periods
- Infertility is due to infrequent/absent ovulation (70% of infertility cases are due to PCOS)
- Regularly missed periods causes build-up of the endometrium, or uterine lining
- Build-up of the endometrium increases the risk for endometrial cancer (3 times more likely)
- PCOS also causes Insulin Resistance, especially without a healthy diet and exercise
- Insulin Resistance promotes weight gain and difficulty losing weight (80% PCOS women)
- Insulin Resistance leads to Diabetes (7 times more likely in PCOS women)
- High androgen levels are due to insulin, hormone imbalance, and genetics
- High androgens cause increased hair, acne/oily skin, and irregular periods
- Therefore, all of the above increases the risk of Endometrial Cancer, Diabetes, Infertility, and more.
Insulin has two roles in PCOS: Insulin resistance in increased androgens. Elevated levels of insulin (even mild) are a universal trait in PCOS women, regardless of weight or other symptoms, and are the cause of insulin resistance.
First, insulin resistance will be described. Think of insulin as a key. When you eat, sugars or starches you have consumed are absorbed into the blood. Your body recognizes this increase in sugars in your blood and sends a signal to your pancreas to release the hormone, insulin. Insulin enters the blood and acts like a key by unlocking your cells. This way, the sugars can move into the cells and out of the blood. When your body is constantly releasing insulin, your cells begin to ignore it, like the boy who cried wolf. Then, when you eat sugar or starch, insulin is no longer able to unlock your cells and sugar stays in the blood. When your cells ignore insulin like this, it is called insulin resistance. Once this point is reached, you may be diagnosed with Type II Diabetes.
Insulin also contributes to the rise in androgens, or male hormones, because ovaries have receptors for insulin. In other words, this means that ovaries can be directly stimulated by insulin. The exact mechanism that causes this is not well understood, however increased androgen production is affected by high levels of insulin.
Androgens include testosterone and DHEA. High androgens affect your menstrual cycle and can lead to anovulation (when you don’t release an egg and therefore don’t have a regular period). Even though your body is not experiencing a regular period, your body keeps building up your uterine lining as though you were going to get one anyways. After this has occurred for many months or even years, your endometrium becomes unnaturally thick. When you endometrium is unnaturally thick, you are at a high risk of endometrial cancer. They are also the cause of other symptoms such as increased body and facial hair, acne/oily skin, hair thinning. A rare, but possible, side effect of unnaturally high testosterone is increased clitoris size.
There are three possible reasons for increased androgens including excess insulin, high LH levels, or even genetic factors. It’s likely a combination of these three reasons that causes high androgen levels in PCOS women.
FSH and LH Balance
FSH and LH are two pituitary gland hormones that rise and fall during the menstrual cycle in non-PCOS women. More important than the individual numbers of these hormones, is the ratio of the two. Ideally, FSH should be less than 10 and LH should be half of your FSH value. In a woman with PCOS, LH can be around three times higher than FSH.
This imbalance causes disruptions in ovulation. Rather than releasing a fully developed and matured egg, high LH inhibits an egg from ever fully maturing. Thus, it is not fully mature and ends up forming one of the small cysts in detectable by ultrasound. As mentioned above, high LH also causes an increased production of androgens by the ovaries, further interfering with the body’s ability to ovulate.
Sex Hormone Binding Globulin (SHBG)
SHBG isn’t exactly a hormone, but rather a protein that helps carry hormones through the blood, like a taxi. This protein is usually low in women with PCOS and allows higher levels of androgens and estrogen to float around in the blood.
Control and Management
The three most important steps in managing PCOS are:
- Prevention of Type 2 Diabetes, Heart Disease, and other related conditions
- Making periods and cycles regular
- Maintain healthy lifestyle with diet, exercise, and weight loss (or weight maintenance)
These three step are usually accomplished through behavioral changes, the addition of certain medications including birth controls, and if necessary, surgical intervention.
Diet is a term often used by people to describe a short period in time for which they adhere to some sort of strict eating terms such as only grapefruits or cutting out bread. Rather than thinking about a diet as well, a diet, it is important to think about it as a lifestyle change. A permanent one. It’s difficult to do for anyone, but for those with PCOS, it’s essential. So from here on out, we’ll refer to your diet as a lifestyle.
The best lifestyle for a woman with PCOS is one that is very careful about sugar and starch intake. Examples of starches include potatoes, corn, winter squash (pumpkin) white rice, white bread, most pasta, etc. Though white bread and sugar look very different, chemically they are very similar. When you eat a simple starch like white bread your body breaks it down into glucose. Glucose is another name for sugar. When you eat sugar or a simple starch, your blood sugar will spike and your body won’t be able to handle taking all of that sugar into your cells. Instead, it will remain in your blood.
One way to get around this is to eat carbs full of plenty of fiber! Now this doesn’t mean just eating your grandfather’s Bran Flakes. Fiber is in lots of foods you may never have expected. Vegetables and fruits are very high in fiber. Even if you make a smoothie from vegetables and fruits, you’ll still be getting the full benefit of fiber from them. Beans and legumes are also a great source of fiber (and protein!). Chia seeds and flax seeds are both high in fiber with the added bonus of Omega-3s which are good for your cholesterol levels. Lastly, 100% whole grain foods are high in fiber. Examples of this are brown rice, 100% whole wheat bread, quinoa, oats, and more.
Fiber regulates your blood sugar and doesn’t allow it to spike like simple starches and sugars do. Fiber also helps your body get rid of cholesterol and keeps your bowels and gut bacteria healthy.
Exercise and Weight Loss
Exercise is important to help maintain weight and lose weight, as we all know; however, it’s also important in the regulation of your insulin. When you exercise, your muscle cells respond better to insulin. This helps you become less insulin resistant and also improves our chances of ovulation due decreased interaction of insulin on the ovaries. Physical training also has effects on lipid metabolism.
Some studies have shown that exercise is especially beneficial for women with PCOS. A study published in Human Reproduction showed that women who exercised even just 30 minutes, 3 days a week showed better insulin sensitivity, improved fertility, and weight loss around the midline (the most important place to lose weight). These women lost less weight overall than their dieting counterparts but proves that regardless of weight loss, regular physical activity is improving your health behind the scenes.
Ultimately, exercise combined with a health diet for your whole life will maximize your health outcomes and reduce your risk for diseases such as diabetes, heart disease, metabolic syndrome, and infertility! Weight loss of even just 15% of body weight leads to more regular cycles.
Stress management with PCOS is also important! Don’t underplay the importance of controlling stress, anxiety, and depression. When you are stressed, your body releases stress hormones that increase the production of testosterone, a big factor in all your PCOS symptoms.
Some tips for stress management:
- Sleep 8 hours a night
- Improve work/life balance and save some time for yourself every day
- Eat real, healthy foods - sugar and caffeine can increase stress
Birth Control Pills
This is the most frequently used treatment for PCOS. Birth control pills suppress LH (which is typically elevated for PCOS women) and therefore decreases male hormone production. They also increase SHBG which helps reduce male hormone levels in the blood. All birth controls are dosed differently, and the best ratio of dosing has not yet been determined for PCOS women . For now, the best way to treat with a birth control is by symptoms.
Birth control pills should help to regulate some of your hormones and improve the regularity of your menstrual cycles. Birth control pills should not, however, be the only method of maintenance for PCOS as it has no true effect on insulin, the primary risk of PCOS. In addition to cycle management with birth control pills, it is important to maintain behavioral management and/or supplement with Metformin or other similar medications.
Yaz and Yasmin are two birth control pills that are especially good for PCOS women. They both contain a type of Progestin that is very good at helping women who are experiencing increased hair growth, acne, and hair loss around the hair line. The down side of Yaz and Yasmin are that some studies show that this birth control pill increases the risk of blood clots and related events, though the risk is still rare.
Progestin Intrauterine devices (IUDs) are another option for women with PCOS. Progestin IUDs thin the lining of the uterus and therefore protect against endometrial cancer which is highly increased in PCOS women.
IUDs are not the best, nor are they a primary intervention for PCOS. If you decide to treat PCOS with an IUD, other interventions are still necessary in order to control symptoms such as increased hair and acne, high levels of androgens. It's also necessary to reduce the risk factors such as diabetes, metabolic syndrome, infertility, etc.
Metformin increases insulin sensitivity, lowers blood sugar decreases sugar absorption by the gut, and also increases the chance for ovulation. It is often used for PCOS pt to help return fertility while simultaneously managing their abnormally high insulin levels. Metformin also helps reduce circulation of male hormones while plays a role in the reduction of other PCOS symptoms. There is some indication that Metformin also contributes to weight loss but it may also be that weight loss improves the function of Metformin.
Clomid or Clomiphene is a medication used to help PCOS women who are having difficulty conceiving. Clomid helps a woman ovulate by changing the hormone balance. With this medication, there is also an increased chance of multiple pregnancies -- twins, triplets, etc. Clomid doubles your chances of having a twin from 1/90 to 1/45.
In the case that Clomid/Clomiphene does not work to help a PCOS woman conceive, a low dose gonadotropin may be used. They cause a higher rate of ovulation and development of a single follicle -- what surrounds the egg as it matures.
Vaniqa is an anti-androgen, FDA-approved cream that helps women who are experiencing excess hair growth related to PCOS. It reduces the growth of unwanted facial hair specifically but it does not permanently remove hair. For permanent removal of hair, a laser hair removal treatment is usually best.
Spironolactone is used in order to treat symptoms of excess androgen. These symptoms include acne, excess hair, and hair loss around the hairline. They work by inhibiting androgens from communicating with your cells.
Ovarian Drilling (not recommended)
One of the old techniques to “cure” women of their cysts was a technique called ‘ovarian drilling’. Doctors would drill into the ovaries of these women. The theory was that by doing this, androgens (male hormones), would be released from the cysts and allow women to return to their normal womanly hormone balance. Well...not really. Today, this technique is not frequently practiced. There is no evidence to show any improvement in other symptoms of PCOS and has no real advantage.
Bariatric Surgery - Gastric Bypass
Bariatric surgery, specifically gastric bypass, is sometimes necessary for women to lose weight. When a women is considered obese and having severe difficulty losing weight, weight loss even via surgery can help her return to normal ovarian and metabolic function. Sometimes this surgery may even prevent a woman from becoming diabetic. Gastric bypass actually corrects insulin resistance. The exact reason for this is unknown, however, it is likely because with a gastric bypass, part of the small intestine is skipped over during digestion. This surgery is only done for those who are severely overweight or obese.
Risks Associated with Diabetes
Diabetes is a serious medical condition in itself that also drastically increases your risk for other medical issues to arise. During diabetes and insulin resistance, sugar floats freely through the blood, causing damage to anything in your body with blood vessels (hint: that’s everything).
Repercussions of uncontrolled diabetes and insulin resistance:
- Kidney failure: lifetime dialysis
- Liver failure
- Increased serious infection risk and slower healing
- Endometrial cancer
- Heart disease
With proper management of PCOS and excellent behavior control by those diagnosed, PCOS is a manageable syndrome. If cycles become regular, weight stays low, and the diet is healthy, women are able to become pregnant and prevent diabetes. Some recent studies have shown that once a woman reaches her forties, ovulation and the balance between FSH and LH improve; however, the risk for Type II Diabetes and Metabolic syndrome remained. The reason for this is still unknown and more research needs to be done.
Some studies and medical professionals are urging for a more systematic screening method for PCOS since many doctors are missing PCOS due to its nature as a syndrome/spectrum type condition. Because there are so many associated conditions with PCOS, early detection and diagnosis is critically important. If it is diagnosed early, not only will you maximize the health potential of the patient, but also minimize the cost for both the patient and the entire medical system.
More people are becoming aware of PCOS and its importance. As this happens, I am hopeful to see a shift in diagnosis of the syndrome while the condition and the women affected receive more respect. Who knows, perhaps in another 5-10 years, PCOS screening will become a normal part of a woman’s first gynecologic visit at 18 years old. Perhaps we can curve the incidence of the associated conditions such as diabetes, endometrial cancer, infertility, and heart disease with the proper treatment and education. I have hope. And you should too. Don’t forget to spread the word, because this is a condition, and you are women who deserve it.
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