In our society today, it is routine when a child is born to begin testing for certain illnesses that could be devastating to development. Doctors have set a routine schedule for growth and development to be evaluated and encourage parents to have children immunized against diseases. Prevention is a buzz word used repeatedly in clinics and hospitals, however, when applied to Polycystic Ovarian Syndrome (PCOS), testing and evaluation is not done until adulthood when the condition is out of control and complications have already begun. Testing and evaluation for PCOS during the adolescent years should be used to prevent devastating complications from PCOS.
Do women know what they have is treatable, and if not treated could lead to devastating disease? There are many women that suffer with the daily complications associated with untreated PCOS. For many women testing is not being accomplished. Because in reality, PCOS women do not even know that there is anything that can be done for the symptoms, and continue to suffer. According to the American Association of Clinical Endocrinologist (AACE):
PCOS is the most common metabolic disorder of reproductive-age women in the United States, is generally known as a reproductive disorder but is also associated with life-threatening medical illnesses. In the U.S., six million reproductive-age women are affected with the syndrome. (“Fact Sheet”)
PCOS was discovered before computers were invented and yet  there’s still no evaluation for PCOS during adolescence, when the symptoms first start to develop. The symptoms associated with PCOS were first reported by Irving Stein and Michael Leventhal in 1935 (9). Women with menstrual problems who had large ovaries because of multiple cysts [classical symptoms] were diagnosed with Stein-Leventhal syndrome. Due to more research these symptoms have become just a subset of a more encompassing syndrome called PCOS. Many people in the medical profession simple call it PCO, because the symptoms will vary in individuals.
The statistics show that no one person has all of the same symptoms, but doctors should be able to make educated guesses and send women in form testing much earlier than during adulthood (11). By the time some women are treated the complications due to lack of treatment have set in, and some women become infertile, overweight, and have depression. In Living with PCOS, Angela Boss states:
Although the age of onset for PCOS symptoms varies, most women with PCOS can think back to their teenage years and remember a point in time when they started feeling “different” and wondering if something was wrong with them. (1)
Signs and symptoms of PCOS include irregular menses, no menses, infrequent menses, central obesity, excessive body hair growth in male distribution pattern, acne, cysts on ovaries, and infertility (2). Abnormal test results such as elevated levels of male hormones, lower female hormones, fasting insulin abnormalities and reduced levels of sex hormone (8).
Another abnormal test, in PCOS that should be evaluated as part of a routine screening for the adolescent, is a cholesterol test. There is a new test being used in the process of evaluating cholesterol (4). The VAP (Vertical Auto Profile) helps to evaluate cholesterol and there seems to be certain factors of cholesterol elevated only in female with PCOS (12). As more studies are conducted to validate this information, this may prove a definitive test for PCOS patients (4). Most parents become very concerned when medication is involved and want some kind of proof there is something medically wrong before starting treatment. Without the VAP test many parents may not take the doctors word, just based on symptoms, their child has PCOS and will need to take medication for treatment. The medication would be used to treat PCOS and Insulin Resistance (IR).
IR the over production of insulin, is one of the more severe, but treatable syndrome associated with PCOS (10). Acanthosis Nigricans (velvety thickening hyperpigmentation of the skin; brown spots) may be present at nape of neck, axillae, area beneath breast and exposed areas (elbows, knuckles) a sign of insulin resistance (2). However, this is also one of the signs used by the doctor to diagnose PCOS. Research has been conducted to determine whether or not IR causes PCOS or whether PCOS cause IR. The debate is similar to the question of which came first the chicken or the egg. “Insulin resistance if not treated can lead to glucose intolerance or type 2 diabetes mellitus” (2). The treatment must be started as soon as possible to avoid complications. In order for treatment to start the condition must be diagnosed.
The diagnosis of PCOS is a hard thing to get from many Physicians. The reason, as stated before, is because symptoms vary from person to person and many physicians are still following the classical symptoms and do not know how to treat this syndrome. The Mayoclinic states, “Management of PCOS focusing on each woman’s main concern, such as infertility, hirsutism, acne or obesity”, this is how most doctors today are treating this syndrome. My daughter, Alizza, experienced this first hand when she could not loose weight no matter what she ate or how hard she exercised. While in one doctor’s office the doctor told Alizza all she had to do was exercise more, eat less and see someone for her depression. Alizza was very depressed and had no self-esteem due to being overweight. She felt the doctor’s recommendation was not the answer and began doing research. She was fortunate to find a doctor that knows about PCOS and how to treat it. As my daughter experienced most women with PCOS have been made to suffer and think that the symptoms were in their head or it was just how they were made and they would have to live with the symptoms.
As more and more studies have been done, there is a plethora of information that is available to the medical community and women. The AACE in conjunction with the Polycystic Ovarian Syndrome Association (PCOSA) is trying to educate doctors and women of all ages in an awareness campaign (2). Most of the sites on the internet have conferences schedule, and public forums to educate people about PCOS. The Associate Press has picked up on PCOS and reported: Doctors often fail to connect the disparate symptoms. There are also stories of how PCOS is affecting women like “Hidden Fertility Disorder can lead to Diabetes” (7). In an effort to educate medical providers the AACE provided this Position Statement:
The physician should no longer regard these women as merely having annoying cosmetic complaints, or primarily suffering from infertility, but as having potential metabolic disorders that may be associated with type 2 diabetes mellitus and cardiovascular events. (2)
Education of the physicians and women is needed to make early diagnosis a reality. Before someone can be treated for a disease they have to know that there is a treatment available to them. With the education that the AACE has started there is a better chance of treating PCOS during the adolescent years.
Doctor Foley, a pediatrician specializing in adolescent gynecological problems, stated in our interview, “Adolescence with abnormal periods should be evaluated for PCOS.” When asked why this evaluation would be important, Doctor Foley had several reasons. Early treatment of PCOS will prevent complication later on in life. There has been an increase in the number of adult onset diabetes in younger and younger children. Weight gain puts them at risk for diabetes, and heart disease. It also has a big impact on self image, which is extremely important in the developing child. We also know that PCOS effects neurotransmitters of the brain and can cause depression.
The last reason for treating PCOS during adolescences was quite a unique philosophy. Until our interview I had not even thought about the implications. According to Doctor Foley adolescent having PCOS have higher levels of testosterone. This high level of testosterone causes females to feel more masculine. The other symptom that most will have is no periods or very irregular periods. Which coupled with high levels of testosterone, could make a girl feel like she is not very feminine. “Insulin resistance (IR) almost always goes hand in hand with PCOS, and girls that have IR will have problems with weight gain, and difficulty losing weight” (10). Put all of this together and Doctor Foley feels this could lead girls to lean toward and alternate life style of Homosexuality:
Girls come in and have made statements like, “I don’t feel right”, and “I don’t look like the other girls, and “I don’t feel like a girl”. Part of this is because the hormone levels are not in a normal range. This is due to the PCOS and IR. After treating the PCOS the girls have returned to state that they feel much more like a normal girl now, because they are now having periods and their testosterone level is within a normal range.
Studies have confirmed the prevalence of PCOS in adolescence. In Doctor Mahin Hashemipour study he concluded PCOS is a common endocrine disorder in adolescents. Adolescents with a mother, or sister that has PCOS and symptoms of PCOS should be evaluated for this syndrome in order to prevent its potential complications (6).
The treatment of PCOS does vary from one doctor to another. The newer philosophy is to focus on the root cause of PCOS. “Many of these new therapies are designed to lower insulin levels and, thus reduce production of testosterone” (3). Doctor Foley agrees with this newer approach however she feels emphasis needs to be placed on the nutritional side of the treatment. Treatment with medication aimed at lowering insulin levels and changing eating habits have shown to eliminate most of the symptoms of PCOS and IR.
The role of hereditary factors in the development of PCOS, its associated metabolic abnormalities and the use of insulin-sensitizing agents in the treatment of PCOS is currently being research at the University of Chicago by Doctor David Ehrmann and his team. Metformin is an insulin lowing drug. It has been approved by the FDA for diabetes, but is not yet FDA-approved for use in treatment of PCOS. These studies will help to find out if metformin does help in lowing insulin production in the PCOS patient. Doctor Glueck studies have found:
During adolescence and childbearing years, before the advent of Metformin therapy, treatment of PCOS was directed (with only modest success) at the presenting clinical feature. Metformin, a safe and effective, widely available, oral medicine increases the effectiveness of insulin at the peripheral cell level, reduces hyperinsulinemia, and reduces hyperandrogengenemia in turn, thus correcting this biochemical domino effect by correcting it at the source.
Doctor Foley currently uses metformin in treating PCOS, and has found dramatic results in her patients and those of her husband, Doctor Steven Foley a Board Certified Gynecologist. Doctor Foley and her husband treat patients with a combination of metformin and nutritional therapy. After a diagnosis of PCOS the patient is scheduled to see a nutritionist for an hour appointment. During my daughter’s evaluation the nutritionist explained that a diet restricting the amount of carbohydrate to 30-50 grams a day, and increasing the amount of protein to 80-100 grams a day, will help to lower insulin levels. As Doctor Foley stated, “It’s a life style change that will be with you the rest of your life.” If the diagnosis of PCOS was made during the adolescent years this life style change could begin sooner and help reduce the risk of long-term complications much earlier. It would also be easier for younger women to adjust to this new lifestyle than when they are much older and set in their ways.
Most women report one or more of the symptoms to their doctor, but unless the doctor has been trained to recognize the symptoms and relate them to each other, many women will suffer until their symptoms worsen, or they develop more symptoms. “Irregular or heavy periods may signal the condition in adolescence, or PCOS may become apparent later when a woman has difficulty becoming pregnant” (8).
At present there is no screening that is done until a woman see a doctor for treatment of her symptoms. If early diagnosis and treatment of PCOS can help reduce the risk of long-term complications in six million women, then why is there no screening during adolescence? Testing and evaluation for PCOS during the adolescent years should be used to prevent devastating complications from PCOS.
1. Boss, Angela, Evelina Weidman Sterling, and Richard Legro. “Adolescent Females.” Living with PCOS. Omaha: Addicus, 2001.
2. Cobin, Rhonda, et al. “American Association of Clinical Endocrinologist Position Statement on Metabolic and Cardiovascular Consequences of Polycystic Ovary Syndrome.” American Association of Clinical Endocrinologists. Oct. 2004. 10 Apr. 2005 [http://www.aace.com/pub/pcos2004/index.php]
3. Ehrmann, David, et al. “Treatment Options.” The University of Chicago Center for Polycystic Ovary Syndrome. n.d. 10 Apr. 2005
4. Foley, Deborah. Pediatrician Advanced Gynecology Prof. LLC. Personal Interview. 15 Mar. 2005. 719-633-8773.
5. Glueck, C.J. “Metformin: The Treatment of Choice in Polycystic Ovary Syndrome.” Health Alliance on line. Scientific Update 5 Sept. 2000. 7 Apr. 2005
6. Hashemipour, Mahin, et al. “Prevalence of Polycystic Ovary Syndrome in Girls Aged 14-18 Years in Isfahan, Iran.” Hormone Research :2004, Vol. 62 Issue 6, p278, 5p. Article. EBSCOhost. Front Range Comm College, Westminster Lib. 10 Feb. 2005 http://rpa.westminster.lib.co.us/rpa/webauth.exe.
7. “Hidden fertility disorder can lead to diabetes.” The Associated Press. 11 Oct. 2004. 11 Feb. 2005 http://msnbc.msn.com/id/6227116 .
8. Hunter, Melissa and James Sterrett. “Polycystic Ovary Syndrome: It’s Not Just Infertility.” The American Academy of Family Physicians 62 (2000): 1079-88. 22 Mar. 2005 http://www.aafp.org/afp/20000901/1079.html
9. Marrinan, Greg. “Polycystic Ovarian Disease (Stein-Leventhal Syndrome).” Emedicine. 30 Aug, 2002. 22 Feb. 2005 http://www.emedicine.com/radio/topic565.htm
10. Pick, Marcelle. “Insulin Resistance in Women.” Women to Women on line. n.d. 9 Apr. 2005 [http://www.womentowomen.com/LIBinsulinresistance.asp]
11. “Polycystic Ovary Syndrome.” Mayo Foundation for Medical Education and Research. 14 Nov. 2003. 2 Feb. 2005 http://www.mayoclinic.com/invoke.cfm?id=DS00423
12. “The VAP Test: An Emerging Standard of Care in Cholesterol Risk Assessment.” Medco Forum. 8 (2001): 36. 29 Apr. 2005