“Put a Stop to the 80-Year-Old Disease”

Macy Newbury

November 22, 2017

Polycystic Ovary Syndrome, or PCOS for short, is a condition that has impacted ten to fifteen percent of the world’s population of women. PCOS often causes fertility complications, changes in physical appearance, sporadic if any menstrual cycles, and mental health disorders. Although the symptoms that coincide with PCOS are devastating, the most tragic of news for women who learn that they the disease is that there is no cure. Most women that have PCOS do not even know that they have the condition. There have not been many organizations that focus solely on this condition, nor is there common, widely spread information about PCOS, but in the most recent years, an incredible corporation has been started to raise awareness on the subject and has even brought political attention to focus on the condition. This group, the PCOS Challenge: The National Polycystic Ovary Syndrome Association, was started in Atlanta, Georgia in 2009 and continues to thrive, informing more and more people on the existence of Polycystic Ovary Syndrome. Even though more people are educated on this lifelong condition now than ever, there are still changes to be made. If more money is given to universities and researchers, studies can be established to examine the long-term conditions and symptoms of PCOS, giving doctors and patients more insight into this unknown affliction. If more donations and support is received by the PCOS Challenge: The National Polycystic Ovary Syndrome Association, then, more events can be planed and sponsored, such as another PCOS 5K Run/Walk. Overall, more needs to be done to inform the unenlightened about Polycystic Ovary

Syndrome. For change to occur, the PCOS Challenge: The National Polycystic Ovary Syndrome Association needs to continuously gain support to continue their goals in educating, universities and researchers need to obtain more money from grants and corporations to field more studies, and additional people need to band together to rally behind those with this ailment, offering unwavering support as one united nation.

To spread awareness about a disease, one must first acknowledge and understand the certain disease at hand, including symptoms and consequences – both short term and long term. Polycystic Ovary Syndrome is best described as a “heterogeneous endocrine disorder that affects about one in 15 women worldwide…The diagnostic traits of polycystic ovary syndrome are hyperandrogenism, chronic anovulation, and polycystic ovaries, after exclusion of other conditions that cause these same features” (Norman, Dewailly, Legro, Hickey 685). Norman, Dewailly, Legro, and Hickey explain that because there are other illnesses that can cause the same symptoms as Polycystic Ovary Syndrome, such as Cushing’s Disease and Eating Disorders, it is often difficult to determine if a person indeed has the condition. There is no simple test to determine if a person has PCOS, but if one has no other disease causing the symptoms of PCOS, including abnormal hair growth, a plethora of acne, and multiple cysts on the ovaries, then, that person most likely has the condition. There are also blood tests that can be done to test the levels of estrogen and testosterone in someone who is suspected of having PCOS, “Most commercial assays for total serum testosterone are not designed or validated for detection within the range for women… the range that is regarded as healthy for women by commercial laboratories is very broad, and has been shown to include many hyperandrogenic women, even those with severe hirsutism” (Norman, Dewailly, Legro, Hickey 686). Norman, Dewailly, Legro, and Hickey explain that in a person with Polycystic Ovary Syndrome,

testosterone levels would be higher, or in a woman where the range is much broader, testosterone levels would be on the higher end of the normal range, indicating that that person very well might have Polycystic Ovaries. However, despite doctors knowing about PCOS for over 80 years, there is still no conclusive root cause of the ailment nor is there a cure to rid a person of PCOS. There is only speculation for the origin of cases of PCOS; most doctors believe that the condition is hereditary and is inherited by certain family members with the dominant gene for the disorder.

Throughout the years since the discovery of Polycystic Ovary Syndrome, there have been only a few corporations that have been organized to raise awareness and educate those on PCOS. One of these coalitions is called the PCOS Challenge: The National Polycystic Ovary Syndrome Association. Founded in 2009, the organization is in Atlanta, Georgia, holding all its events, such as the Bolt for PCOS 5K Run/Walk which is held at the Georgia Institute of Technology or Georgia Tech, in Atlanta. Although the organization finds its home in Atlanta, the “PCOS Challenge is partnered with many of the leading PCOS research centers globally. Your support helps with recruiting and important research efforts” (PCOS Challenge, Inc.), lending resources and volunteering efforts to those around the nation. Unlike many organizations that are only concerned about those in the immediate area around that certain organization, the PCOS Challenge: The National Polycystic Ovary Syndrome Association is selfless in its thoughts and actions, caring about all people around the globe that suffer from the terrible ailment of PCOS. Not only sharing medical care and advice, this organization also gives financial assistance to those who cannot pay for treatment, providing “grants for women and girls with PCOS in medical and financial need to assist with the costs of services not covered by insurance such as nutrition counseling, fertility treatments and hair and skin treatments” (PCOS Challenge, Inc.) If

the PCOS Challenge: The National Polycystic Ovary Syndrome Association continues to receive support, financial and otherwise, then, many more people who cannot afford treatment for PCOS can be assisted. This organization can plan more events and raise more money for the furthered research of the illness. More beneficial plans and occasions can be planned to help those who have PCOS and to help raise awareness for the disease so many people are uneducated on.

There have been various studies researching the characteristics of Polycystic Ovary Syndrome as well as the percentage of women in different countries and together worldwide who have the illness. The University of California in San Francisco, California performed a study between the years of 2006 and 2012 on a group of 401 women who were racially diverse and suspected of Polycystic Ovary Syndrome. The researchers first narrowed down who did and did not have PCOS, and they found that “In total, 68.8% (276 of 401) met the Rotterdam PCOS diagnostic criteria, while 12.0% (48 of 401) did not. Overall, 11.5% (46 of 401) had insufficient data to render a diagnosis, 1.7% (7 of 401) were excluded from the study, and 6.0% (24 of 401) refused to participate in the study” (Schmidt, Khanjow, Cedars, Huddleston, Pasch, Wang, Lee, Zane, Shinkai), concluding that 68.8% of the 401 women had PCOS while 12.0% of the 401 women did not. Over the period of May 18th, 2006 to October 25th, 2012, the women were given “skin examination and transvaginal ultrasonography… All patients were tested for levels of total testosterone, free testosterone, dehydroepiandrosterone (DHEAS), androstenedione, luteinizing hormone, and follicle-stimulating hormone” (Schmidt, Khanjow, Cedars, Huddleston, Pasch, Wang, Lee, Zane, Shinkai), tests that examined the women’s levels of testosterone, hair growth hormones, acne causing hormones, and hormones of the adrenal gland – a gland that regulates the body’s metabolism and stress levels. The results of this study were that “Among women with PCOS, the presence of hirsutism…was associated with higher

rates of elevated free testosterone levels as well as several metabolic abnormalities, including insulin resistance, dyslipidemia, and increased body mass index” (Schmidt, Khanjow, Cedars, Huddleston, Pasch, Wang, Lee, Zane, Shinkai), depicting that the women in the trial who had PCOS and unwanted male hair growth patterns had elevated testosterone levels, high levels of insulin resistance – when the glucose levels in one’s body are overproduced and the body cannot respond accurately, increased body weight, and extremely high cholesterol levels. Unwanted male hair growth patterns or hirsutism is a common symptom in women who have PCOS and can only be treated by a medical professional. The study found that in women who have PCOS, the most identifiable symptoms of the disease are hirsutism as well as acanthosis nigricans, dark patches on a body, specifically in crevices and folds. While Hirsutism can be self-diagnosed, acanthosis nigricans requires a professional diagnosis. Schmidt, Khanjow, Cedars, Huddleston, Pasch, Wang, Lee, Zane, and Shinkai have concluded that “Hirsutism and acanthosis nigricans – otherwise known as AN – are the most reliable cutaneous markers of PCOS” and require a medical professional or doctor to perform a skin evaluation and diagnose a woman with PCOS.

Another trial was performed by Mario Ciampelli, Anna Maria Fulghesu, Francesco Cucinetli, Virginia Pavone, Elio Ronsisvalle, Maurizio Guido, Alessandro Caruso, and Antonio Lanzone at their clinic in the year 1999. The researchers performed several tests, looking at the weight, glucose levels, various hormone levels, as well as other health levels – such as carbohydrates – of the 110 women with Polycystic Ovary Syndrome who participated. The researchers were looking for obesity in the women and what was found is astonishing. Ciampelli, Fulghesu, Cucinetli, Pavone, Ronsisvalle, Guido, Caruso, and Lanzone concluded that “The prevalence of obesity in PCOS is higher than in the normal population. Most women with PCOS become overweight just before or during puberty, and several lines of evidence suggest that the

onset of obesity in this period of life could represent a specific factor for subsequent development of PCOS”, agreeing that most women who have Polycystic Ovary Syndrome develop obesity or become overweight before or during puberty, and if a woman develops obesity very early on, she could very well develop PCOS. Another study was constructed at the University of Alabama between the time of July 1st, 1998 and October 31st, 1999, consisting of “608 unselected consecutive premenopausal women at ages 18–45 yr seeking a preemployment physical at the UAB…Of these, eight were excluded due to either pregnancy or menopause, and 200 (33%) refused to participate, yielding a total of 400 subjects (66% of screened) available for study (223 Black, 166 White, 11 of other races)” (Azziz, Woods, Reyna, Key, Knochenhauer, Yildiz). Throughout the study, Azziz, Woods, Reyna, Key, Knochenhauer, and Yildiz examined the women for abnormal hair growth as well as irregular menstrual cycles. The researchers concluded at the end of the trial that “In this prospective study of an unselected sample of 400 reproductive-aged women, the estimated prevalence of PCOS was 6.6%”, stating that of the 400 women who participated in the University of Alabama’s study, 6.6% of them had Polycystic Ovary Syndrome. This percentage is lower than the international percentage of PCOS which is 15%. 6.6% may seem like a low percentage but it means that 26.4 women out of the 400 participants have PCOS, a number that is still alarming. More studies like these need to be procured and established to search for a cure to PCOS. If a cure is found, then, the disease could be eradicated and the percentage of 15% would be lowered to 0%.

Overall, Polycystic Ovary Syndrome is a highly ignorant topic amongst the general population of the world. Those who live in Atlanta, Georgia have a higher opportunity to become educated on the matter due to the station PCOS Challenge: The National Polycystic Ovary Syndrome Association being stationed in the city. Additional support – financial and otherwise –

needs to be given to this organization to raise awareness, fund more research projects, and give medical support to those who cannot afford it. If more people are educated on the topic of PCOS, more money can be given to researchers who are performing clinical trials to understand more about the condition that so many suffer from. Polycystic Ovary Syndrome is an ailment that has existed for over 80 years, and still there is no cure. If more people band together in support of people with PCOS, then, more opportunities will arise that will help put a stop to the disease that threatens so many.

Works Cited:

Norman, Robert J, et al. “Polycystic Ovary Syndrome.” The Lancet, Elsevier, 23 Aug. 2007, www.sciencedirect.com/science/article/pii/S0140673607613452.

Inc., PCOS Challenge. “Where Funds Go.” PCOS Awareness Weekend 2017 – Atlanta : Where Funds Go – PCOS Challenge, Inc., 2017, http://support.pcoschallenge.org/site/TR?sid=1028&pg=informational&fr_id=1070

Schmidt, T H, et al. “Cutaneous Findings and Systemic Associations in Women With Polycystic Ovary Syndrome.” JAMA Dermatology., U.S. National Library of Medicine, 15 Apr. 2016, www.ncbi.nlm.nih.gov/pubmed/26720591. :

Ciampelli, Mario, et al. “Impact of Insulin and Body Mass Index on Metabolic and Endocrine Variables in Polycystic Ovary Syndrome.” Metabolism, vol. 48, no. 2, 1999, pp. 167–172., doi:10.1016/s0026-0495(99)90028

Azziz, Ricardo, et al. “Prevalence and Features of the Polycystic Ovary Syndrome in an Unselected Population | The Journal of Clinical Endocrinology & Metabolism | Oxford Academic.” OUP Academic, Oxford University Press, 1 June 2004, http://academic.oup.com/jcem/article/89/6/2745/2870315.