PCOS Demystified: Empowering Women with Accurate Information
Certain medical conditions can significantly alter your lifestyle and even your fertility. While these disorders can have a lasting impact on your well-being, many of their worst consequences could be avoided through proper education. Unfortunately, misinformation related to the medical sciences has never been more widespread. As a result, many people overlook treatable issues while others prefer a self-diagnosis to experts' opinions—often leading to entirely avoidable problems. In recent years, sufferers of PCOS, Polycystic Ovarian Syndrome, have come to embody this negative trend.
Most of us genuinely want to understand our health; thus, we take it upon ourselves to conduct online research and find answers to medical complaints. As you embark on this quest, it is essential to recognize the proliferation of misinformation in our online spaces. Some conditions, such as PCOS, are complex and require further research and professional assistance to diagnose fully. Moreover, it is equally important to seek out professionals grounded in the nuances of this medical condition instead of ones dealing with myths rather than facts.
What is PCOS?
Polycystic Ovary Syndrome (PCOS) is a complex hormonal disorder that affects countless individuals, yet its intricate nature often leads to confusion among patients. The disorder involves an imbalance of reproductive hormones, leading to symptoms that can impact fertility, menstrual cycles, and overall well-being. Contrary to its name, the majority of individuals diagnosed with PCOS do not have any cysts on their ovaries. Instead, the condition's true impact is disrupting our regular hormonal cycles.
Hormonal fluctuations are just one aspect of the multifaceted reality of PCOS. Experts have come to recognize the condition by several traits and symptoms:
1. Hormonal Chaos: PCOS often revolves around insulin resistance, triggering the overproduction of insulin and androgens, often called “male” hormones in everyday conversation. This hormonal interplay can contribute to irregular periods due to irregular ovulation acne and unwanted hair growth on the face, chest, back, lower abdomen, and/or inner thighs.
2. Fertility and Ovulation: Irregular ovulation can complicate fertility for PCOS patients. However, the absence of regular periods doesn't necessarily equate to infertility. Proper management can enhance the chances of conception.
3. Metabolic Health: PCOS's impact extends beyond reproduction. It's closely linked to metabolic syndrome, elevating the risk of type 2 diabetes and cardiovascular issues. Lifestyle modifications and medical guidance are pivotal for long-term health.
4. Emotional Well-being: The emotional toll of PCOS is often underestimated. Hormonal fluctuations can contribute to mood swings and even anxiety. Recognizing these challenges is essential for holistic management. Some of the negative societal approaches to patients with PCOS can also further affect one’s sense of self and self-esteem.
5. Tailored Approaches: No two persons’ PCOS experiences are identical. A personalized approach encompassing diet, exercise, and, when necessary, medical intervention is crucial. Consulting a healthcare professional is paramount for effective management.
By unraveling the intricate threads of PCOS, we gain a comprehensive understanding of its impact on physical, emotional, and reproductive well-being. Dispelling myths and delving into reality empowers individuals with PCOS to seek informed care, make lifestyle adjustments, and embrace their unique journey toward health and vitality.
Common Misconceptions of PCOS
By understanding PCOS inside out, we pave the way for empowerment, enabling those affected to navigate its challenges with resilience and grace. Separating facts from fiction when it comes to PCOS can be a challenge, but it is far from impossible. Here are some common misunderstandings related to the disorder:
Myth #1: You Cannot Have PCOS if You are Skinny
This myth does a disservice to many women and girls who are suffering from PCOS. It never ceases to amaze me when patients say they were told they could not possibly have PCOS because they have ‘normal’ weight. Misinformation like this can lead to a patient going years without their correct diagnosis and management.
While obesity is a common finding in women—with PCOS. 40-80% of women with this condition are reported to be overweight—it is false to assume that lean or skinny women cannot have PCOS, too.
The truth is that 20%—and in certain ethnic groups, up to 50%—of women with PCOS are considered average weight based on body mass index (BMI) calculations. Many PCOS women with ‘normal’ weight still face the strains of PCOS-related infertility, increased androgens like testosterone, and other resulting symptoms (e.g., acne or hair loss), including insulin resistance, heart disease, and diabetes.
As mentioned above, just because PCOS is highly associated with obesity, normal-weight or skinny women with PCOS often go undiagnosed for years – an unfortunate outcome with which even medical professionals who fail to diagnose these women must come to terms. In most cases, these women may be unaware of their PCOS until they start struggling to conceive and are finally diagnosed by a reproductive endocrinology and infertility specialist like myself.
The disorder's pathophysiology in thin women may vary from that in overweight women due to the hypothalamic-pituitary defect that results in increased release of LH. To learn the odds about your possible PCOS diagnosis, it is imperative to consult with a doctor who is versed in PCOS for more comprehensive information.
Myth #2: You Cannot Have PCOS if You Have Regular Periods
This is another myth that has gained widespread traction and leads to many women falsely reassuring themselves that they could not possibly have PCOS.
Having a conversation about periods with someone with PCOS is multilayered. Firstly, while many women with PCOS have irregular periods, they may not know it because they were likely put on hormonal/contraceptive pills as teenagers or in their early twenties to artificially ‘regulate’ their periods. As a result, many women with PCOS who have irregular periods do not know it.
Others may have had irregular periods at one point in their lives, but then they started a diet/exercise regimen that led to weight loss, which in turn brought about a more regular period—a good thing! However, having a regular period does not mean that you do not have a history of irregular periods and, thus, PCOS if you meet the remaining diagnostic criteria. In fact, some PCOS patients have regular periods their whole lives.
So, how do we define regular versus irregular periods? If you have PCOS and are not on hormonal or contraceptive management, your menstruation may be irregular or stop altogether. An irregular period cycle is described as menstrual periods longer than 35 days or eight or fewer per year. These intermittent periods (bleeding) are typically due to absent or irregular ovulation (egg release) from your ovaries. Meanwhile, it is considered ‘regular’/’normal’ if your average menstrual period is between 28 to 35 days and includes one ovulation (i.e., egg release).
Menstrual irregularity is a symptom of PCOS but can also be a symptom of alternative conditions like thyroid disease. So, it is essential to have this conversation with someone who understands the spectrum of PCOS and other disorders that may affect your period to understand your medical situation fully.
Some women with PCOS and irregular periods can induce regularity through lifestyle modification like changes in their diet, exercise, and body weight. On the other hand, if you experience regular periods but have any other PCOS symptoms, further diagnostic testing and medical intervention may become necessary – do not assume that regular periods mean you cannot have PCOS.
Myth #3: You Cannot Get Pregnant if You Have PCOS
For some reason, this myth has become prevalent even among healthcare providers. As a result, some women with PCOS have been erroneously told that they can never get pregnant on their own, despite a plethora of ‘miracle’ stories where women detail conceiving even after a healthcare professional told them they could not. This myth also leads to many PCOS women incorrectly choosing not to use contraception, even though they are sexually active and do not desire pregnancy.
So, let me be clear: while PCOS is a significant cause of anovulatory infertility (i.e., not releasing eggs regularly) for women seeking to start a family, this is not the case for everyone with PCOS. The truth is that while some women with PCOS struggle with conceiving, even those who do not ovulate regularly can ovulate and get pregnant without intending it. So, if you have PCOS and getting pregnant is not your goal, you need to use some form of contraception if you are engaging in heterosexual relations or relations with someone who was born with testicles.
If you desire to conceive and have PCOS, consult with your doctor and discuss fertility treatment options. There are several viable options to stimulate your ovulation, including lifestyle modification, supplements, and medications. Fertility treatments for women with PCOS include straightforward steps like ovulation induction with tablets such as Clomid or letrozole, which cause the ovaries to release an egg or may consist of assisted reproductive technologies such as in vitro fertilization. This can help you manage your condition and achieve pregnancy promptly.
If you have PCOS and want to start a family, this is the time to set aside skepticism and work towards your goal. Working with a reproductive endocrinology and infertility specialist can help you get on the right track.
Myth #4: You Must Take Fertility Treatment Medication if You Have PCOS
Fertility treatment and commercial medications are feasible solutions to treat PCOS, especially if you do not ovulate regularly. However, to some, they can be a daunting option — so you may reroute your PCOS treatment journey to natural and alternative solutions. These work for a small subset of PCOS patients. However, these methods can also take a long time to produce results, and in many PCOS patients, they do not work sufficiently well enough to achieve pregnancy. So, it is essential to manage your expectations if you pursue such treatments.
Insulin resistance and hormone dysregulation are principal factors for PCOS. You can manage these factors and alleviate symptoms through lifestyle modification and dietary changes, but there’s no all-purpose approach to treatment.
Choose Your Diet – Eating the right foods and ditching certain ingredients can help you manage your PCOS symptoms. You may have read or heard about this all the time, but diet indeed contributes to modifying PCOS symptoms. Eating preserved and heavily processed foods can contribute to insulin resistance and inflammation. It’s time to rethink your diet by considering whole foods free from hormones, antibiotics, preservatives, and artificial sweeteners. Whole grains, fruits, vegetables, and legumes are whole foods you should add to your meals. Generally, you may want to focus on a low-carb (not no-carb) diet rich in complex or low glycemic index starches.
Eat Regularly – PCOS is not one of those conditions where you should starve yourself. You must aim to have breakfast daily if you have PCOS to reset your brain and overcome the tendency to shut down reproduction messages that insulin resistance and other hormonal changes can cause when the brain thinks a PCOS patient is starving. I often encourage my patients to have breakfast and eat small, balanced meals every three to four hours.
Lose Weight—If you are overweight based on BMI calculations and especially if you have irregular periods, you can often jumpstart your ovulation by losing some weight. Losing 5% to 10% of your body weight is critically important in helping to achieve more regular menstrual cycles and ovulation. Maintaining a healthy weight can decrease insulin resistance, regulate periods, and reduce the risk of other PCOS symptoms.
Your go-to option for achieving this weight loss goal is to perform fat-burning exercise interspersed with resistance training while eating regularly and drinking lots of water. However, pace yourself, listen to your body, and check in with your doctor before any new exercise or diet regimen. Too much activity can disrupt your hormones. So, do gentle and low-impact exercises like going for long walks, yoga, light aerobics, or swimming, and then do strength or resistance training every other day.
Sleep Hygiene—Sleep regulates stress levels, primarily the stress hormone cortisol, which can impact the ovulation signals from your brain. Sleep disturbances are typical for some women with PCOS. To improve your sleep hygiene, aim for eight to ten hours of sleep per night, develop a regular bedtime routine, and steer clear of stimulants and rich, fatty foods before sleep.
Myth #5: You Cannot Have PCOS if You Don’t Have Facial Hair or Acne
Facial hair, medically known as hirsutism, can be caused by several factors, including medications (e.g., testosterone, glucocorticoids, anabolic steroids, etc.), thyroid disorder, Cushing’s syndrome, tumors or cancer of the ovary or adrenal gland, hyperthecosis, and of course, PCOS.
While facial hair growth is heavily linked with PCOS as one of its distressing symptoms, it does not automatically affirm that you have the condition and vice versa. Due to excess androgens, most women with PCOS can grow unwanted hair on their upper lip, lower face, chin, chest, back, lower abdomen, or the upper area of the inner thighs. However, not everyone has this symptom. Additionally, some women may experience hair loss from the head in a male pattern (temples and mid-crown), which may also be a sign of PCOS.
According to Dr. Loren Wissner Greene, a professor of endocrinology and OB-GYN at NYU Langone Health, ethnicity is another factor to consider in women and girls who grow excess hair—meaning, your excess hair growth may be genetic. Although hirsutism doesn’t result in physical complications, the underlying cause of a hormonal imbalance can. Therefore, excess/unwanted hair growth or hair loss from the head needs to be addressed by a specialist.
Similarly, cases of acne may be related to some women's high androgens from PCOS. Still, these symptoms may also be caused by other factors, such as high-glycemic foods, dirt/pollution, heredity, and choice of cosmetics. Your specialist may need blood tests and physical exams, including a gynecologic exam and even a pelvic ultrasound, to identify the cause(s) of your acne symptoms and determine possible PCOS or if other conditions, such as thyroid or ovarian problems, cause the sign.
Be informed. Engage in a conversation with your fertility doctor to learn more about PCOS. While PCOS is undoubtedly a challenge in and of itself, the spread of medical misinformation and the recent tendency for self-diagnosis among patients have too often undermined successful treatment. By differentiating fact from fiction, you can become empowered to control your health and life. Most importantly, know your body — the more you understand yourself and work towards a healthy lifestyle, the better results you will see.