According to PCOS Challenge, The National Polycystic Ovarian Syndrome Association, PCOS (polycystic ovarian syndrome), is a serious genetic, hormone, metabolic and reproductive disorder that affects women and girls. It is the leading cause of female infertility and a precursor for other serious conditions including obesity, type 2 diabetes, cardiovascular disease and endometrial cancer. The organization estimates PCOS affects 10-15% of women of reproductive age, which is higher than the percentage of our US population impacted by diabetes (9.4%). Unfortunately, the awareness of this syndrome is much less than that of diabetes. However, the cost burden to our healthcare system is $13.8 billion dollars!
Let’s get you informed by covering common PCOS-related misconceptions and the facts behind them. We spoke to Dr. Marcelle Cedars, Director, Center for Reproductive Health, at the UCSF Center for Reproductive Health, which created a PCOS Clinic to support women via a cross-disciplinary team.
Myths and Facts
Myth: Try to conceive (TTC) for one year before seeking medical advice.
Fact: While the definition of infertility is an inability to conceive after trying for one year if you are under 35 or for six months if you are over 35, this assumes a typical 12 exposed menstrual cycles in a given year. Those with PCOS, however, have irregular cycles, perhaps having only 12 cycles over a period of five years. Thus, if you fall in this latter category, seek medical advice sooner rather than later.
Dr. Cedars suggested, “If you used to have a 28-day cycle and now it is 25 days, that is worrisome. If your cycle is over 35 days, get proper intervention.”
There are inexpensive, effective medications that can induce ovulation. Once you ovulate, chances of successful pregnancy are the same as that of the general population.
Myth: You are not ovulating.
Fact: Patients with PCOS do ovulate, but the challenge is that one is unclear when ovulation occurs. That is why some women unexpectedly become pregnant.
Myth: You are told you are fine and simply missed your period.
Fact: While 80% of those with irregular cycles have PCOS, the remainder don’t. PCOS requires evaluation by lab testing, a part of which includes ovarian failure test (FSH - follicle stimulating hormone), to be diagnosed. Unfortunately, when a misdiagnosis of some kind or more specifically, an improper diagnosis of simply missing periods is made, incorrect medications, like birth control, are provided. “This potentially masks other problems. Worse yet, such patients are not properly counseled,” states Dr. Cedars. Severe depression is a common PCOS symptom.
Unfortunately, patients with primary ovarian insufficiency see an average of three clinicians before a proper diagnosis. As patients, it is important to ensure your doctor is not making assumptions solely based on your irregular cycle and instead, does a proper lab workup.
Myth: You can’t get pregnant.
Fact: Women with PCOS can get pregnant. However, those with PCOS often think that if their period is “regular,” they are not ovulating, so they don’t use contraception. However, they can also be the ones to get pregnant unexpectedly, as stated above.
It’s not that women don’t ovulate but instead unsure of when. Dr. Cedars remembers the unfortunate incident of a patient visiting the PCOS clinic at the age of 39 stating she was told at 18 she’d never had a child. Thus, she did not get into a relationship because she did not want to do that to her partner.
Myth: In order to have PCOS, you must be obese.
Fact: Obesity is not necessarily a component of PCOS. In Europe, PCOS patients’ BMI is in the low 20’s. However, in the US it is 35. Remember, the foundation of PCOS is insulin resistance. Because of this, if you eat an unhealthy diet, you will gain weight. Unfortunately, the US diet is filled with heavy carbohydrates and processed foods, which tends to lead to obesity.
Data, however, is mixed on how hard it is to lose weight if you have PCOS.
Myth: Ovaries have abnormal cysts that could be dangerous and cause complications.
Fact: “These are not classic cysts (i.e., abnormal fluid collection). However, women do have an increased number of small immature follicles (fluid filled sacs that contain an egg). This situation is not dangerous, yet the word “cyst” in the name creates confusion,” says Dr. Cedars. According to PCOS Challenge, the cysts are caused by follicles (fluid-filled sacs that contain an egg) that have matured in the ovary, but because of the abnormal hormone levels, were never released. In PCOS, one or both of the ovaries can also become enlarged, sometimes up to 1.5-3 times their normal size.
The following are common PCOS symptoms. If you present with any of these symptoms, contact your doctor for a proper workup:
● Irregular periods
● Excessive facial and body hair
● Severe acne
● Small cysts in ovaries
● Insulin resistance
● Anxiety and depression
● Weight gain
● Male pattern baldness
As Dr. Cedars states, “Women often underestimate how much biology is telling them what is going on.”