Article 1 of 2: Heather - A Beacon of Hope
A beacon of hope
BY MARY ELLEN SCHNEIDER
If you’ve experienced or treated endometriosis, Heather Guidone’s story will sound familiar. She knew something wasn’t right with her body even before menarche. By age 14, she was having debilitating menstrual cramps, missing school, and spending a week each month in bed. And despite growing up in a family full of women, these topics just weren’t discussed.
Perspectives on Endometriosis Management
In her teens, as her symptoms steadily worsened, she sought treatment from a gynecologist. And she considers herself lucky to have obtained a diagnosis of stage IV endometriosis early on – at the age of 19. But that’s where her luck ran out. Over the years her health deteriorated and she estimates that she sought treatment from 15 doctors across specialties and underwent numerous treatments and surgeries. Desperate for answers and armed with good health insurance, Ms. Guidone even sought out so-called celebrity gynecologists in her quest for the best care available.
The turning point for her health came in her late 20s when she found the Center for Endometriosis Care in Atlanta. She calls the center a “beacon of hope.” There, she was treated via laparoscopic excision of endometriosis. She was pregnant 4 weeks after the excision surgery, following 6 years of infertility.
But after she delivered, she continued to experience pain. Her surgeon had told her at the time of the excision surgery that she probably had adenomyosis in addition to endometriosis and that some pain would continue if she opted to keep her uterus, but she had wanted to try for a baby. Now that her son was 6 months old, Ms. Guidone decided to have a hysterectomy, which ultimately confirmed the adenomyosis.
In the midst of pain, multiple medications, and surgeries, Ms. Guidone said she took stock of what she wanted to do with her life. While she had been involved with the endometriosis research and treatment community since her diagnosis, after becoming pregnant with her son, she quit her job in investment banking to focus on her health and her work in endometriosis. With that, she turned her passion into a full-time career in health education, medical writing/research, and patient advocacy.
She’s currently the surgical program director at the Center for Endometriosis Care in Atlanta – the AAGL-designated Center of Excellence in Minimally Invasive Gynecology (COEMIG) where she was treated successfully nearly 20 years ago. She’s received awards from the National Women’s Health Foundation and the Nezhat Family Foundation’s EndoMarch for her work in endometriosis advocacy. Being an advocate has been a big part of how she has coped with her own disease.
Ms. Guidone stressed that there’s more to coping with endometriosis than the emotional component. For her, education is essential.
Ms. Guidone still has her off days, but she tells women that endometriosis doesn’t have to take over their lives. For her, endometriosis reshaped her journey, but she sees it, ultimately, as something that infused her life with meaning.