Polycystic Ovarian Syndrome: Some Common Misunderstandings

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Polycystic ovarian syndrome (PCOS) is an important medical condition that has both metabolic and reproductive impact. PCOS is extremely common and affects one in 10 women of reproductive age; however, various studies put the percentage of impacted women at eight to 13%. Despite its name, PCOS is not primarily a problem in the ovaries but a lack of proper communication between the brain and the ovaries. Insulin resistance or pre-diabetes also seems to play a major role in most cases of PCOS.

This syndrome has been studied for over 75 years and yet some of the causes of the syndrome remain not well understood. Most common presentations are irregular menses and abnormal hair growth, or acne caused by elevated testosterone levels in women. There are many misconceptions about PCOS which I hope to explore in depth here. These are the questions or statements that I commonly hear from my patients with PCOS.

1. “I have gained a lot of weight over the last two years because I have PCOS.”

Many women believe that it is because of their polycystic ovaries that they have gained weight. This statement is not true. Many women with PCOS have insulin resistance or pre-diabetes. It is these metabolic abnormalities which can cause weight gain or difficulty losing weight. The same metabolic abnormalities prevent regular ovulation and create multiple follicles on the ovaries i.e. the ovaries begin to appear like polycystic ovaries. Five to ten % body weight loss can help women with PCOS to ovulate more regularly and improve their hormonal profile. It is not PCOS that has caused the weight gain but the metabolic abnormalities including weight gain that has led to the irregular menses and polycystic ovaries.

2. “I have been told I have PCOS. I am concerned that I have large cystic ovaries and may need surgery to remove these large ovarian cysts.”

The truth is polycystic ovarian syndrome is a terrible name for this syndrome; many follicle ovarian syndrome would be a more appropriate name. The ovaries do not have large cysts, but many more follicles than the average woman. In a normal cycling woman, a few follicles will develop each month and eventually one will release an egg (ovulate), leaving the ovary with a few small follicles. In polycystic ovarian syndrome, the follicles start to develop but they never get proper stimulation from the brain so the many small follicles remain. Women with PCOS are not necessarily at higher risk for large ovarian cysts or surgery. They do not have large cysts but simply many more small follicles than the average woman.

3. “I have been told I have PCOS and therefore am worried that I will never be able to have a baby. I am concerned that my ovaries are defective or have aged prematurely.”

Women with PCOS do not specifically have a problem with their ovaries but have a problem with proper signaling between the ovaries and brain. Their fertility does not decline any faster than an average woman’s fertility. Women with PCOS have normal fertility when undergoing IVF. Also, women with PCOS have very high AMH levels which are a marker for higher fertility. They simply have many healthy follicles in their ovaries. In women with PCOS, the brain is often not signaling the ovaries properly; therefore, the follicles do not develop, and a woman does not ovulate. The abnormal signals from the brain to the ovaries cause the ovaries to produce extra testosterone. Sometimes elevated insulin levels and insulin-like growth factor levels interfere with the proper brain to ovary communication preventing ovulation.

4. “Don’t I need an ultrasound to confirm that I have polycystic ovarian syndrome?”

Women do not need an ultrasound to confirm that they have polycystic ovarian syndrome; this is generally a clinical diagnosis. Simply having irregular menses with either increased hair growth, severe acne or elevated male hormones in blood tests is all that is needed to make the diagnosis. An ultrasound is not indicated or necessary in women with PCOS.

5. “Isn’t there a pill or some treatment that can correct the polycystic ovaries and make the problem go away?”

Unfortunately, there’s no single pill or any other treatment which will make the syndrome go away. As stated above, weight loss can be helpful in decreasing the metabolic abnormalities. When a woman wants to conceive it is important to remember that her ovaries have healthy eggs and simply don’t get the stimulation from the brain. Often oral medication, including Clomid or Letrozole, will trick the brain into sending the proper signals to the ovaries and help her to ovulate. In addition, if a woman has insulin resistance to the addition of metformin, a medication which can lower insulin levels, can be helpful. Occasionally the ovaries will not respond to these oral medications and the patient will need to take injectable medications to induce ovulation. These medications are the exact same chemical that the brain produces, FSH, but they bypass the brain and stimulate the ovaries directly.

6 “I am very thin, and I heard that only overweight women have PCOS, so I don’t think I have PCOS despite having very irregular periods and problems with hair growth on my lip chin and abdomen.”

The truth is that although most women who have PCOS are overweight, one in three women with PCOS are normal weight and have atypical PCOS. These women often have an excess of a hormone called LH which is released from the brain and causes the elevated testosterone levels and irregular menses. Usually, these women can be treated with the same oral medications as overweight women with PCOS.

Polycystic Ovarian Syndrome is a common hormonal disorder and while there might not be a definitive cure for it, regular exercise and a healthy diet can help with the symptoms. If you’re looking to expand your family or have more questions about PCOS, contact your physician or find a fertility specialist.

This article originally appeared on Medium.