Polycystic Ovary Syndrome: Debunking PCOS Myths, Because You Deserve the Truth
Certain medical conditions can potentially change your lifestyle and even your fertility. While some disorders can truly affect your wellbeing, some people, unfortunately, also fall ill due to the disease of misinformation and misconception. Some people lament over myths while others endure nonexisting symptoms due to self-diagnosis that is rooted in a false narrative, rather than science. PCOS, Polycystic Ovarian Syndrome, is not an exemption to this.
I understand that most of us truly want to understand our health and thus, we take it upon ourselves to do online research, in a quest for answers to our unaddressed medical complaints. As you embark on this quest, it is important to recognize the other side of the misinformation coin. There are conditions, such as PCOS, which are complex and often require further research and professional assistance, in order to have clarity on the matter. It is equally important to seek out professionals who truly understand all the nuances of this medical condition and who do not inadvertently traffic the myths rather than the facts.
The Truth about Polycystic Ovary Syndrome
PCOS is one of the most misunderstood medical disorders in women. Unfortunately, there are heaps of myths circulating about PCOS that overshadow and misdirect the public perception. Although you can easily sift through the internet for fact verification, as a PCOS expert, I must also admit that the reliability of much of the information online can be questionable at times.
PCOS is a hormonal disorder that is prevalent amongst women and girls of reproductive age and affects up 11% of them. Clinically, PCOS can take on different pictures in different women and girls. Those afflicted by this condition may experience a variety of symptoms, in varying combinations, which include irregular menstrual periods, acne, headaches, abnormal facial or body hair growth, and sometimes, weight gain. Hormone imbalances such as having higher-than-normal amounts of the male hormone, testosterone, and irregular or no ovulation, often make it more difficult for women with PCOS to get pregnant. Moreover, the condition often contributes to further complications even in a woman’s post-reproductive years including heart disease, hypertension, stroke, and diabetes.
Specific diagnosis of PCOS is made based on the presence of any two (2) out of three (3) of the following:
History of irregular periods.
Clinical evidence of excess androgens – such as unwanted facial or body hair or acne of the face, chest or back – or lab, blood, tests that show excess androgens (i.e testosterone or DHEA).
Evidence of at least one polycystic appearing ovary on an ultrasound of the pelvis.
Having any two of these three factors above is all that is needed to make a diagnosis of PCOS. As you will notice, none of the three make any mention of weight, ethnicity, or age. Critically important, you also do not need to have “polycystic ovaries” on ultrasound to actually have a diagnosis of PCOS. Separating facts from fiction, when it comes to PCOS, can be a challenge but it is necessary. To shed light on the truth about PCOS, I am debunking the top PCOS myths for you.
1. You Cannot Have PCOS if You are Skinny
This is one myth that really does a disservice to many women and girls who are actually suffering from PCOS. It never ceases to amaze me when patients say they were told that they could not possibly have PCOS because they have ‘normal’ weight… a complete piece of misinformation that leads to these women and girls going years without their correct diagnosis and management!
Yes, obesity is a common finding in women with PCOS. In fact, 40-80% of women with this condition are reported to be overweight. However, while weight gain is indeed prevalent for most PCOS patients, it is totally false to assume that lean/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 to be of normal 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) like 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 make the diagnosis in 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 pathophysiology of the disorder in thin women may vary from that in overweight women. Due to the hypothalamic-pituitary defect that results in increased release of LH, it has been reported that PCOS develops in nonobese women. To learn the odds about your possible PCOS diagnosis, it is imperative to consult with a doctor who is versed on PCOS for more comprehensive information.
2. You Cannot Have PCOS if You Have Regular Periods
This is another myth that has gained popular attention and traction and leads to many women falsely reassuring themselves that they could not possibly have PCOS.
Having a conversation about periods in 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 while they were a teenager or in their early twenties, to artificially ‘regulate’ their periods. As a result, many women with PCOS, who actually have irregular periods, do not know it. For others, they 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, now having a regular period, does not mean that you do not have a history of irregular periods and thus, PCOS, if you have any of the other diagnostic criteria (remember 2 out of 3 are needed) which I listed at the beginning of this article. Lastly, some PCOS patients indeed have regular periods, their whole lives.
So, how do we define regular versus irregular periods? If you have PCOS, and are not on any hormonal or contraceptive management, your menstruation “may” be irregular or stop altogether. An irregular period cycle is described as either menstrual periods longer than 35 days or eight or fewer menstrual periods per year. Typically, these irregular periods (bleeding) are 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 it can also be a symptom of other conditions (not PCOS) like thyroid disease. So, it is important to have this period conversation with someone who understands the spectrum of PCOS and other diseases which may affect your period to parse through the details which are needed to help investigate your medical concern.
Some women with PCOS, who have irregular periods, can induce regularity to their menstrual period through lifestyle modification like change of diet, exercise, and weight loss. On the other hand, if you experience regular periods but have any of the other PCOS symptoms, further diagnostic testing and medical intervention may become necessary – do not assume that regular periods mean you cannot have PCOS.
3. You Cannot Get Pregnant if You Have PCOS
For some reason, this myth has become prevalent even amongst healthcare providers and as a result, some women with PCOS have been erroneously told that they can never get pregnant on their own. Of course, this is not true and often leads to the ‘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 known as a major 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 a goal of yours, you need to use some form of contraception if you are engaging in heterosexual relations.
If you have a desire to conceive and have PCOS, give yourself a redemption by consulting with your doctor and discuss fertility treatment options. There are a number of viable options to stimulate your ovulation, including lifestyle modification, supplements and medications. Fertility treatments for women with PCOS include straight forward steps like ovulation induction with tablets like clomid or letrozole which cause the ovaries to release an egg or may include assisted reproductive technologies such as in vitro fertilization. This can help you manage your condition and, therefore, achieve pregnancy in a timely fashion.
If you have PCOS and want to start a family, this is your time to set aside skepticisms and work on your goal. Working with a reproductive endocrinology and infertility specialist can help you get on the right track.
4. You Must Do Fertility Treatment Medications 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 choose to reroute your PCOS treatment journey to natural and alternative solutions. These work for a small subset of PCOS patients! I must also keep it real and let you know that it can take a long time to see results and in many PCOS patients, it does not work sufficiently well enough to achieve pregnancy. So, it is important to manage your expectations if you embark on such a journey.
Insulin resistance and hormone regulations 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 it’s true that diet contributes to the modifying process of PCOS symptoms. Eating preserved and heavily preserved foods can contribute to insulin resistance and inflammation. It’s time to rethink your diet option by considering whole foods that are free from hormones, preservatives, and artificial sweeteners. Whole grains, fruits, vegetables, and legumes are whole foods you can add to your meals. Working on eating low carb (not no carb) diet which is rich in complex or low glycemic index starches is a big benefit.
Eat Regularly – PCOS is not one of those conditions where you should starve yourself. In fact, it is imperative that you aim to have breakfast daily, if you have PCOS, in order 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 between 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 and listen to your body and check in with your doctor before any new exercise or diet regimen. Too much exercise can disrupt your hormones. So, make sure to do gentle and low-impact exercises like yoga and light aerobics, or swimming coupled with every other day’s strength or resistance training.
Sleep Hygiene – Sleep regulates stress levels and especially regulates the stress hormone, cortisol which can in turn impact your ovulation signals that come from the brain. Sleep disturbances are normal 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 from stimulants and rich, fatty foods before sleep.
5. You Cannot Have PCOS if You Don’t Have Facial Hair or Acne
Facial hair, medically known as hirsutism, can be caused by a number of 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 in turn, 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 just be genetics. 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 the high androgens of PCOS in some women but it may also be caused by other factors such as high glycemic foods, dirt/pollution, heredity, and choice of cosmetics. Your specialist may need to do blood tests, 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 identify if the symptom is caused by other conditions, such as thyroid or ovarian problems.
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Be informed. Engage in a conversation with your fertility doctor to learn more about PCOS. By differentiating the facts from the myths, you can become empowered to take control of your health, and life. Know your own body — get to know it better and make sure to nurture it as you head to your journey of fertility.