Up to 10% of women and girls worldwide have polycystic ovary syndrome (PCOS), .complex hormonal disorder for which there is no cure. If left untreated PCOS can be a precursor to many life threatening conditions including type II diabetes, hypertension, cardiovascular disease, stroke and kidney problems.
This means PCOS contributes to some of the leading causes of death and disability in women today!
PCOS Awareness Advocate Ashley Tabeling, after over six years of service to the PCO.community is aggressively campaigning for more awareness, exposure and education for PCOS( Polycystic Ovary Syndrome ). For Ashley who was diagnosed with PCOS in 1999, PCOS Awareness has been played a key role in helping her learn to live and deal with Polycystic Ovary Syndrome and ultimately live a healthier life. Ashley says, "PCOS Awareness has to happen now to ensure women and girls do not have to go through another day, month or year of silent suffering and to ensure they are educated on how to live a healthier life with this syndrome."
What PCOS is, and what it does to women who have it, i.complicated to explain as symptoms and severity of the syndrome can vary from person to person. Some of the classic symptoms are drastic weight gain, hair loss, depression, fatigue, thyroid problems, high cholesterol, panic attacks, headaches, dizzy spells, poor memory or muddled mind, sleeping disorders, constant thirst, extreme cravings, insulin resistance, cystic acne, cystic ovaries, anovulatory menstrual cycles ( cycles without ovulation ), irregular cycles, severe mood swings, high testosterone levels, infertility problems, excess facial and body hair, not to mention an increased risk for four major health concerns affecting women in the United States today.
One of the mos.common risks associated with PCOS is Diabetes. Many women with PCOS are insulin resistant, a condition which raises the level of insulin circulating in the body contributing to a serious pre-diabetic condition. In can also affect the glucose levels in the body, increasing the risk of diabetes even more.
In many cases the insulin resistance causes women with PCOS to become overweight or obese, which in turn raises cholesterol and blood pressure putting a woman with PCOS at seven times the greater risk as a normal woman to have hypertension, a heart attack or a stroke.
Infertility is yet another condition many women with PCOS face. PCOS is the number cause of infertility in American women today. However, less than half of the women and girls with PCOS know they have it! A woman with PCOS may have irregular cycles, non-exsistant cycles or in many cases cycles without ovulation. These factors make achieving pregnancy a daunting task for many and may lead to conditions such as miscarriage, endometriosis and early ovarian failure.
PCOS can even increase a woman's risk for endometrial cancer. Women with PCOS can go months without having a menstrual cycle and when women do not ovulate on a regular basis, the lining of their uterine wall becomes very thick and vulnerable. This increases the chance for endometrial cancer and hysterectomy of the utereus and ovaries.
So, why is PCOS so difficult to diagnose and where is the awareness for this serious condition?
Part of the problem, then and now, is that the PCOS symptoms manifest themselves in different ways. In fact, not all affected women have polycystic ovaries. Women with PCOS can have an.combination of symptoms of varying severity. As a result, researchers, doctors and women themselves looked at the symptoms individually rather than collectively.
Prior to a few years ago, PCOS had been largely misunderstood and rarely diagnosed. So much so that it has even been added to the National Organziation for Rae Disorders list!
"The information to make a proper diagnosis just wasn't there," said Ashley. "Your concerns, in many cases, would have been dismissed. Now the medica.community is realizing it is more than menstrual irregularities, it's a lifelong condition that can take years off of your life", says Ashley. Ms. Tabeling has been advocating for more awareness and the removal of PCOS as a rare disorder from NORD. "The listing of PCOS as a rare syndrome doesn't jibe with 10 percent of women having it," says Ms. Tabeling.
There have been many studies done which in fact support Ms. Tabeling's case that PCOS is in fact a ver.common disorder affecting a large number of women.
Studies supporting PCOS affects an estimated 10% of women are:
Knochenhauer ES, Key TJ, Kahsar-Miller M, Waggoner W, Boots LR, Azziz R. Prevalence of the polycystic ovarian syndrome in unselected Black and White women of the Southeastern United States: A prospective study. J Clin Endocrinol Metab 1998,83:3078-82.
Diamanti-Kandarakis E, Kouli CR, Bergiele AT, et al. A survey of the polycystic ovary syndrome in the Greek island of Lesbos: hormonal and metabolic profile. J Clin Endocrinol Metab 1999,84:4006-11.
Asuncion M, Calvo RM, San Millan JL, Sancho J, Avila S, Escobar-Morreale HF. A prospective study of the prevalence of the polycystic ovary syndrome in unselected Caucasian women from Spain. J Clin Endocrinol Metab 2000,85:2434-8.
Ashley plans to incite, inspire and empower the PCO.community to speak very openly about their struggles, symptoms, and trials to overcome the illness, to help other women and girls understand the syndrome and seek the proper resources to help them manage their lives with PCOS. She hopes to be a driving force in changing the way the public, media and government views PCOS education, treatment and coverage for medical procedures and treatments, as a result of PCOS. " I find it very unsettling that male impotence medications are covered by most insuranc.companies but, women who have a legitimate endocrine disorder that requires the care of a doctor and specific medications have to struggl.come up with money so they can receive the proper treatment!", says Ms. Tabeling.
Ashley's desire to spread awareness stems from what she and many other women with PCOS have gone through, years without the proper diagnosis and not knowing what was truly wrong. Thousands of women from around the country have experienced the same lack of response from the medica.community with little understanding of PCOS and the best way to treat it. Many medical professionals still view the syndrome as a gynecological problem and only address the syndrome when issues of infertility arise. As a result, single women, older women and those not trying to get pregnant often still have little chance of being diagnosed.
"It Is my personal goal to ensure every medical professional makes the proper diagnosis. Furthermore, I think girls who ar.coming of age should learn about PCOS when they are learning about sex education in school ", said Ms. Tabeling, who continues to dedicate her life to PCOS Awareness and Advocacy.
