Why Call it PCOS?
Medical research has come a long way since then. New discoveries are made every day and improved technologies surface to help us find answers. We now know that these "cysts" are not really the focus of PCOS, nor are they required for a diagnosis. Typical symptoms of PCOS are menstrual issues, lack of or inconsistent ovulation, polycystic ovaries, hormonal imbalances, skin and hair problems, excess face and body hair growth and/or loss of scalp hair, depression, infertility and changes in weight - just to name a few. As you see, PCOS is properly categorized as a "syndrome" meaning "a complex of symptoms that together indicate the existence of an undesirable condition or disease." Having said that, a woman can have all or only some of these symptoms present to be diagnosed with PCOS. You may be thinking "How can that be, if Polycystic Ovary Syndrome indicates cysts on the ovaries right in the name? Wouldn't that mean I would have to have cysts to have PCOS?" Absolutely not. Remember, the term "PCOS" has been used for decades - before we knew that PCOS begins in the endocrine system and that reproductive issues are only symptoms of the underlying cause. Polycystic Ovaries (or PCO) are a symptom, and in many cases its own diagnosis, not the defining moment of PCOS. In fact, a female at any age can have PCO - regardless of their medical conditions or lack thereof. We now know that the "cysts" described by Drs. Stein and Leventhal were not really cysts at all. Each so-called "cyst" is a follicle where an egg was growing at one time, but did not complete its development and release (ovulation). After a while these follicles accumulate near the surface of the ovary, giving the appearance of "many cysts." These follicles are benign, and generally don't cause issues in and of themselves, other than to thicken the covering of the ovary. Occasionally, one of these follicles may grow into an "ovarian cyst." This occurs when fluid or blood begin to enter and fill the follicle, causing it to grow and in some cases to rupture. These types of ovarian cysts can be very painful, and may require surgical removal. They occur both in women who do and do not have PCOS. There is currently no data that shows that ovarian cysts are more common in women with PCOS than in women without PCOS. Many people confuse these types of ovarian cysts with the "polycystic ovary," containing many incompletely developed follicles, each of them having failed to release its egg. They are really two very different things. You may be the victim of an unknowledgeable doctor if (s)he dismisses PCOS because you don't suffer from PCO. Polycystic ovaries (many follicles) will not have developed if you have been using birth control pills for a number of years, or if you have other hormonal imbalances that cause the follicles not to grow on a regular basis. Yet you may still have PCOS because you may have insulin resistance and blood sugar issues, elevated testosterone and other "male" hormones, as well as some of the physical characteristics of PCOS. PCOS is diagnosed using, at the very minimum, two tools. Blood work and medical history are absolutely vital. In some cases, a pelvic or abdominal ultrasound is used, and some doctors perform a laparoscopy. Whatever approach your doctor proposes to use, make sure (s)he is using more than one medical method for diagnosing. But again, remember that diagnosis of PCOS may or may not include PCO. If a doctor looks at you without doing any test, and tells you that you do or do not have PCOS, seek another opinion. I would encourage you to find an Endocrinologist or a Reproductive Endocrinologist for this particular condition as PCOS is connected to insulin resistance, and must be treated with this foundation in mind. So why is PCOS still called PCOS if the "cysts" are not the focus? That's a very good question. Change in the medical community requires a great deal of discussion and consensus. Changing the name from PCOS to something more accurately descriptive of the condition has been discussed within the National Institutes of Health and other professional organizations. Possibilities have included "Chronic Hyperandrogenic Anovulation" and other clinically-focused names. But doctors and other authorities have not been able to agree upon the change. Until that happens, we are stuck with the name "PCOS." I hope you feel more confident about your diagnosis of PCOS, with or without the presence of "polycystic ovaries." Knowledge is power! Angi Ingalls |
PCOS was originally named "Stein-Leventhal Syndrome" after the two doctors who classified this disease back in the 1930s, having found polycystic ovaries to be the universal symptom in their patients. What appeared to be "cysts" were considered the defining symptom to diagnose what is now called Polycystic Ovary Syndrome (PCOS).