PCOS – One Woman's Story Inspires Others
September is Polycystic Ovarian Syndrome Month. Frequently shortened to PCOS, this syndrome can go undetected for years, while creating health issues for the women affected by it.
Through the month of September, there will be information published right here to help women who all ready know that they have PCOS as well as women who may have some troubling symptoms and need to consider making an appointment to rule out this very common endocrine disorder.
At Reproductive Medicine Associates of Connecticut (RMACT), we host more than 200 workshops, support groups and classes each year, many of which are complementary and open to the public. Our educational events support our infertility patients who are trying to build their families, as well as our PCOS Program for adolescents and women of any age who are not yet ready to start a family. One example is a recent Polycystic Ovarian Syndrome (PCOS) event that was inspired by a patient.
A PCOS Personal Story
When Jana G. was 13 years old, she had unexplained physical symptoms including irregular menstruation, weight gain, acne, and hirsutism (excessive facial and body hair) . For the next three years her PCOS went undiagnosed by her pediatrician. During this time, she developed elevated cholesterol levels, insulin resistance and pre-diabetes. Finally, at 16 years old Jana was diagnosed with PCOS and started treatment.
PCOS & Nutrition Management
However, she was not fully managing her condition until her early 20’s when she started working with Carolyn Gundell, MS, RMACT’s nutritionist. Gundell has worked with hundreds of PCOS patients and was not surprised that managing Jana’s condition required frequent, individualized nutrition counseling targeted at PCOS’s unique metabolic challenges. Gundell said, “PCOS continues to be a well-kept secret in some parts of the medical community and finding a provider with a PCOS specialty can often be difficult. Many patients express frustration over going years without a PCOS diagnosis or effective management and feel a sense of relief when they finally find providers who can address both the reproductive and metabolic PCOS imbalances.”
Through her hard work with Carolyn, Jana’s health has dramatically improved; she has lowered her cholesterol, reduced her body fat percentage, increased her muscle mass, and has lowered her risk for diabetes. Consequently, she has improved her health for today and tomorrow. What is sometimes not known is that when PCOS is not managed (or when it is poorly understood by the patient), it can lead to heart disease, diabetes, endometrial cancer and infertility.
Living & Thriving with PCOS
RMACT, Jana, and three additional RMACT patients partnered to lead a patient-centered educational event to create patient awareness about PCOS and how to manage it. On June 22, the room was packed with over 20 patients from both New York and Connecticut, along with their friends, parents and partners to attend "Living & Thriving with PCOS – A Patient’s Own Story" at RMACT’s Danbury location.
Jana said: “It was such an amazing experience to see how many people I helped and inspired that day. By sharing my story I connected with many people going through similar struggles and I hope they are motivated to work harder towards their goals of staying healthy and uniting together as women with PCOS.”
Gundell, who is a part of RMACT’s dedicated PCOS team that includes endocrinological, psychological and behavioral support, and nutrition education, found the event equally moving. She said: “Living with PCOS is a daily challenge for our patients – emotionally and physically. Our seminar provided a supportive opportunity for our guest speakers and attendees to share their inspirational stories, ask questions, and express their own daily frustrations with weight management, infertility, and health issues. By the end of the evening, it became clear to us how important it is to offer these PCOS groups so women have access to credible information versus being misled by many internet websites.”
Jana’s seminar is one example of the many ways in which RMACT is reaching out to the PCOS community and engaging them wherever they happen to be in their lifecycle.
Missed this event?
About Lisa Rosenthal
Lisa has over thirty years of experience in the fertility field. After her personal infertility journey, she felt dissatisfied with the lack of comprehensive services available to support her. She was determined to help others undergoing fertility treatment. Lisa has been with RMACT for eleven years and serves as Patient Advocate and the Strategic Content Lead.
Lisa is the teacher and founder of Fertile Yoga, a program designed to support men and women on their quest for their families through gentle movement and meditation.
Lisa’s true passion is supporting patients getting into treatment, being able to stay in treatment and staying whole and complete throughout the process. Lisa is also a Certified Grief Recovery Specialist, which is helpful in her work with fertility patients.
Her experience also includes working with RESOLVE: The National Infertility Association and The American Fertility Association (now Path2Parenthood), where she was Educational Coordinator, Conference Director and Assistant Executive Director.