Topic of the Month

August 2021 Topic of the Month: PCOSAA – Who are we and what is PCOS?

By: Brianna Grimes

Who is PCOSAA?

PCOS Awareness Association is a non-profit organization dedicated to the advocacy of Polycystic Ovarian Syndrome (PCOS). The organization and its team of volunteers are dedicated to raising the awareness of this disorder worldwide, providing education and support services to help women understand what the disorder is and how it can be treated. The Association also provides support for women diagnosed with PCOS to help them overcome the syndrome and decrease the impact of its associated health problems. 

PCOS Awareness Association was founded in 2012 by Megan M Stewart and Satoya Foster, who were diagnosed with PCOS themselves and wanted to spread awareness about it along with help others going through similar experiences. Megan Stewart began showing symptoms of PCOS at the age of 9 (hair, weight, lack of period, hair loss) but was not formally diagnosed until she was 16 when they also diagnosed her with Cervical Cancer. In 2009 she was admitted to the ER for massive abdominal pain due to PCOS. When leaving the ER her mother said she could tell Megan was fed up with feeling sick, being told it was all in her head, the weight gain and the hair loss. Megan started researching answers and searching for support but found that not one place had everything she was looking for. The timeline below tells the story of how the PCOS Awareness Foundation began.

What is PCOS?

Polycystic Ovary Syndrome, or PCOS, is a health condition that affects about 10 million women in the world. Polycystic Ovarian Syndrome (PCOS) is a hormonal disorder common among women of reproductive age. Women with PCOS may have infrequent or prolonged menstrual periods or excess male hormone (androgen) levels. The ovaries make the egg that is released each month as part of a healthy menstrual cycle. With PCOS, the ovaries may develop numerous small collections of fluid (follicles) and fail to regularly release eggs. 

Polycystic ovary syndrome (PCOS) is a health problem that affects 1 in 5 women of childbearing age. Most women find out they have PCOS in their 20s and 30s, when they have problems getting pregnant and see their doctor. But PCOS can happen at any age after puberty. Women of all races and ethnicities are at risk of PCOS. The risk of PCOS may be higher in case of obesity or in a case of if the mother, sister, or aunt historically had PCOS. 

There could be a number of reasons why so few people have heard of PCOS, despite the fact that as many as 1 in 10 women are living with it. Some of the symptoms are embarrassing to talk about. Hirsutism, or the growth of excessive facial or body hair, is one of the tough side effects that women often deal with. The hair on their head may start to thin, while thicker strands sprout up in other unwanted places. Fast and seemingly uncontrollable weight gain is another hurdle that many with PCOS face, and the taboo surrounding these subjects may discourage them from bringing them up to their doctors — or anyone else. 

The exact cause is unknown, but it is considered a hormonal problem. Genetics and environmental factors are believed to be involved in the development of PCOS. It is a leading cause of female infertility and is responsible for a number of symptoms that can affect the body physically and emotionally.  Despite the name, many women do not have cysts on their ovaries. In 2013, an independent panel of experts recommended to the National Institutes of Health that the name be changed because the name is confusing and hinders patient care and research efforts. Hormones involved in PCOS include: Androgens, Insulin and Progesterone.  

Many women don’t realize that their PCOS symptoms are related to this condition. Breakouts can be brushed off as adult acne or genetically oil skin, and irregular periods can easily be mistaken as “no big deal” or a side effect of stress. Infertility is another easily missed sign, and many women only learn they have PCOS when they begin having difficulty getting pregnant. As a “syndrome,” PCOS manifests itself in different ways, making it difficult for doctors to diagnose in the first place. There are no specific tests for PCOS, and diagnoses are based on a series of tests, which could include a pelvic exam, an ultrasound, blood tests, and an analysis of symptoms. Unsurprisingly, this confusing condition is easy to misdiagnose, or to not diagnose at all. 

As of today, there is no cure for PCOS, but there are many ways you can decrease or eliminate PCOS symptoms and feel better. Your doctor may offer different medicines that can treat symptoms such as irregular periods, acne, excess hair, and elevated blood sugar. Fertility treatments are available to help women get pregnant. Losing as little as 5% excess weight can help women ovulate more regularly and lessen other PCOS symptoms. The ideal way to do this is through nutrition and exercise. You may feel that it is difficult to lose excess weight and keep it off, but it is important to continue the effort. Your efforts help reduce the risk for developing serious health complications that can impact women with PCOS much sooner than women without PCOS. The biggest health concerns are diabetes, heart disease, and stroke because PCOS is linked to having high blood pressure, pre-diabetes, and high cholesterol.

Connect with PCOSAA to learn even more and find out how you can take action!