As discussed in Part 2, polycystic ovary syndrome (PCOS) can cause a wide range of symptoms,1 including:
On the surface, this list of symptoms may seem contradictory or not connected—you may not realize there’s a link between unpredictable periods, weight gain, and adult acne, as well as other issues like insulin resistance and prediabetes. Researchers aren’t sure why women with PCOS may have so many different symptoms.
While some women with PCOS have several telltale signs of this metabolic condition caused by multiple hormone imbalances, others may have just two or three symptoms. It’s important to let your doctor know about any and all of the health issues and concerns you have been experiencing since it can help in getting an accurate diagnosis more quickly, and the sooner your clinician knows what’s causing your symptoms, the sooner your doctor can begin working to treat it.
No single test exists to diagnose PCOS. Instead, doctors must rely on symptoms, blood tests, a physical exam, and sometimes a pelvic ultrasound to determine whether you have polycystic ovary syndrome – rather than another condition that can trigger similar signs and symptoms. Sounds simple, but adding up the evidence can take time, and will no doubt be a bit frustrating.2
The process of trying to diagnose PCOS can be both time-consuming and confusing for several reasons. First, major health organizations in the US and around the world disagree about how best to confirm if a person actually has polycystic ovary syndrome. The sticking point: Does a woman have to have high levels of androgens – “male” hormones such as testosterone that is also produced naturally by the female body – to have PCOS? Some groups say yes, others say no.
In a comparison of the three main medical organizations, the US National Institutes of Health guidelines say that a PCOS diagnosis should be made based on a chronic lack of periods (anovulation) plus signs of high androgen levels.2 Guidelines published in 2006 by the Androgen Excess-Polycystic Ovary Syndrome (AE-PCOS) Society takes a slightly different view, pinpointing that a patient has PCOS if—A woman has high androgen levels and ovary dysfunction. Meanwhile, international guidelines called the Rotterdam Criteria say that a woman may have PCOS if she experiences any two out of the three major symptoms: high androgen levels, polycystic ovaries, or irregular menstrual cycles.3
An expert panel, represented by members of the American Association of Clinical Endocrinologists, the American College of Endocrinology, and the AE-PCOS Society,1 issued best practices for diagnosing and treating PCOS, that agree for a doctor to clearly make a diagnosis of polycystic ovary syndrome a woman must have at least two out of the three symptoms as presented in the Rotterdam Criteria.
The medical groups acknowledge that having a difference in recommendations for diagnosing PCOS creates problems for doctors, and makes settling on a diagnosis a much less certain and slower process. “Many doubts remain for the clinician who has to establish the existence of the criteria” in a woman who may have PCOS,1 the groups write in their final report.
Doctors may be cautious about delivering a diagnosis for some women (especially those in their teens and early 20s) because symptoms like irregular periods, ovarian cysts, and acne can be a normal part of puberty. This is reasonable since these symptoms may resolve on their own, as confirmed by researchers from the University of Sydney who make this point in an article published in the British Medical Journal. 4
This may be the case particularly for women who do not have high levels of androgens (“male” hormones produced in excess in the female body). The researchers acknowledge that an early diagnosis can help women with PCOS restore fertility, normalize their menstrual cycles, and protect against polycystic ovary syndrome-related risks for diabetes, heart disease, and endometrial cancer. But they add that women and their doctors should understand each individual’s real risks for PCOS.
Your doctor will ask you about your menstrual-cycle history and whether you have tried to get pregnant but couldn’t. PCOS has a genetic component and often runs in families, so she or he will also ask whether your mother, sisters or other close female relatives have had PCOS or PCOS-like symptoms. In addition, you will receive a physical exam.
Physical exam: Your healthcare practitioner will look for signs of high levels of androgens such as excess hair growth and acne on your body. Of course, a nurse will ask you to stand on a scale to get a current weight. You may also receive a pelvic exam to check your ovaries.
Blood and Imaging tests: Your doctor may recommend blood tests to measure hormone levels and a pelvic ultrasound to get a closer look at your ovaries. Since PCOS still remains a diagnosis of exclusion, your doctor will ask you questions to rule out or rule in conditions that may mimic polycystic ovary syndrome.
This information will help your doctor will look for these three defining signs of PCOS.
● Irregular menstrual periods caused by a lack of ovulation or by irregular ovulation. Periods more than 35 days apart are a strong sign of ovulation problems. But if your periods are slightly irregular – more like 32 to 35 days apart – your doctor may order blood tests at mid-cycle to check progesterone levels, a sign of ovulation.2
● Higher than normal androgen levels. Your doctor may look for physical signs of high levels of testosterone and other male hormones – such as excess hair, male-pattern hair loss, and stubborn, severe acne – or use the results of blood tests.
● Polycystic ovaries on pelvic ultrasound. Thanks to newer, more sensitive ultrasound equipment, experts say doctors should look for 25 or more cysts on a woman’s ovary to diagnose polycystic ovaries. (Tests using older ultrasound equipment, which is less sensitive equipment, look 12.) In teenagers, the number of cysts may be higher. Your doctor may also look for enlarged ovaries. 2
Remember, your doctor may diagnose PCOS if you have two out of three of the symptoms, as described above. But first, she or he will rule out other potential medical conditions that cause similar symptoms, including pregnancy, thyroid gland problems, adrenal hyperplasia (when the adrenal gland produces excessively high levels of androgen hormones), Cushing’s syndrome resulting from a pituitary gland tumor, and hyperprolactinemia (when the pituitary gland makes too much prolactin).2
If you do have polycystic ovary syndrome, you and your doctor will develop a management plan based on your current health concerns, and your needs. Your doctor may focus on regulating your menstrual periods, improving insulin sensitivity, acne, and excess hair growth, and speaking with you about making a plan to address your weight and avoid further weight gain. If you’re trying to become pregnant or planning to become pregnant in the near future, your treatment may be slightly different. An in-depth discussion of treatment options will be presented in Part 4, which will explore how PCOS is likely to be managed.