Discovering the future of women’s health care

In This Issue

Endometriosis Research Study Newsletter  |  Spring 2014

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           The LOUD voice for Endometriosis



Not too many people would appreciate their voice being described as “loud,” however, this isn’t the case with Heather Guidone. In fact this is something that she is proud of. Once called “one of the loudest voices in endometriosis,” Heather has spent the last twenty-plus years as an educator and universal advocate for this disease. Her work takes her from the operating room to patients’ bedsides to speaking engagements around the world. Heather considers it “an absolute honor and privilege” to serve those in the global endometriosis community. 


Heather’s journey with endometriosis began, as many do, in adolescence. Although viewed as normal menstrual cycle pains, Heather’s symptoms increased in severity over the years.  After years of debilitating pain, Heather was ultimately diagnosed with advanced stage 4 disease and infertility. In Heather’s words,  "It was the ultimate case of the cobbler's child having no shoes...I worked in endometriosis and women's health - and before that, the Fortune 500 corporate sector in a major metropolitan city - so I had access to the so-called "best surgeons" and self-appointed "celebrity" gyns in the country, at any time - and yet, still - I could not find quality care for myself," she recalled painfully in a recent interview.  "It was incredibly depressing and frustrating...it became a second, full time job, just trying to find someone who believed my pain and didn't just brush me off," she recounted. "My family, my co-workers, my friends...no one understood." Heather also notes that this diagnosis occurred before the days of Internet and Social Media, “support groups were few and far between - literally, we had old-fashioned pen pals....” Because Heather felt that she had no one to turn to, she silently suffered for years.


It wasn’t until after 6 year of infertility and more than 20 surgical procedures, countless alternative therapies, and rounds of failed medical suppressive treatments that Heather decided to become her own health advocate and literally “took her care into her own hands.” This path of self-advocacy led her to the Center for Endometriosis Care’s founder, Dr. Robert Albee, Jr. Heather underwent a complex and lengthy excision including of the diaphragm, bowel, rectovaginal cul de sac, ureters, kidney, bladder and beyond. She credits Dr. Albee with drastically improving her quality of life - and for her son, a "CEC miracle," born less than a year following her excision.


After all these years, Heather continues her tireless efforts to serve the endometriosis community in any facet she can.  She believes that "No woman or girl should still be going undiagnosed in these modern times of advanced medicine for a decade. A decade...or even longer…” Heather further believes “There should never be a time when a woman or girl affected by this insidious illness still feels alone and isolated.  No one likes to talk about periods and bowel problems, but until we change the culture of menstrual misinformation that has been handed down for generations from doctor to mother to daughter, we will never see advances in this disease." And so, Heather talks.  She tells her story at every opportunity she is afforded.  She hopes that by sharing her excruciating symptoms, pain during sex and struggles with infertility, “someone out there will benefit, and that's all that matters."                                                                                           


Heather is a member of the American Academy on Communication in Healthcare; the Society for Menstrual Cycle Research, the Society for Participatory Medicine, the ASRM Special Interest Groups on Endometriosis, Contraception, the Environment & Reproduction, Imaging in Reproductive Medicine, Nutrition, Menopause, Pediatric & Adolescent Gynecology, and Female Sexuality; the Society of Laparoendoscopic Surgeons' Endometriosis Special Interest Group; the National Association of Chronic Disease Directors, the Association of Reproductive Health Professionals; the American Association of Gynecologic Laparoscopists, and a member of the President’s Council of the National Patient Advocacy Foundation. Heather will be traveling feverishly throughout the month of March to educate and inspire others to take a stand against endometriosis. She will be in Washington, D.C. as a Member of the Advisory Board for the Million Women March (MWM), in Toronto, Canada, as a keynote speaker for the biennial Endometriosis Symposium hosted by The Endometriosis Network Canada, at the University of Houston, and several other events. Heather invites contact from anyone wishing to learn more about the CEC via email at Heather@centerforendo.com.