Heather Guidone is a women's health educator and clinical writer with a dedicated focus on reproductive gynepathologies - specifically endometriosis and pelvic pain - who has served the clinical and consumer health industries for nearly 25 years in various capacities. Having been called “one of the loudest voices in endometriosis,” she is known for her passionate, extensive work throughout the global disease community.
Heather joined the CEC nearly a decade ago, wherein she is responsible for management of the Center's disease education and advanced Laparoscopic Surgical Excision (LAPEX) treatment programs. She continually strives to promote education and foster advocacy while facilitating clinical services within the minimally invasive gynecologic surgery (MIGS) and endometriosis communities, but importantly, is also a woman who has experienced Stage IV endometriosis, 'frozen pelvis', adenomyosis, leiomyoma and primary infertility herself. Subsequently, in addition to her professional capabilities, she possesses a unique perspective and understanding of the pain, devastation, isolation and missed opportunities that accompany the disease - which others, while sympathetic, can never truly grasp having not lived with endometriosis first-hand. She can also personally speak to the vast benefits of quality excision surgery as the cornerstone of treatment for endometriosis, having finally undergone successful excision for her disease more than 16 years ago after countless, failed surgeries and medical therapies. Her life has long been dedicated to assisting as many of those affected by endometriosis as she can from all regions, and her relationships with many of the CEC's patients continue long after their surgeries are completed.
Heather can be found in the CEC’s operating room, at invited speaking engagements across the United States and beyond, and anchoring a number of off- and online education and support resources for endometriosis. She is a MIGS/pelvic pain educator throughout the community, corporate, school/university, hospital, media and healthcare settings; most recently teaching "Endometriosis: Diagnosis to Management" to level II community nursing classes in order to better assist them in caring for their own local patients and giving a course series to 8th grade co-ed science classes to increase the level of disease awareness among adolescents in the school setting.
She believes unity among those fighting for better care, awareness and education is the key to advancing the disease, and is gratified to be a part of the global network of supporters, activists, educators and practitioners. "My wish is for every woman and girl with endometriosis to be able to make empowered choices about her own care," she says. “No one with this painful illness should EVER feel alone or hopeless.” Her single most important piece of advice? "You have an absolute right to a high quality of life and to live well in SPITE of endometriosis. Know that successful treatment options DO exist. Gather all the information you can - then choose your options based on informed decisions." She eagerly waits for the day when a universal cure for endometriosis is discovered, but until then, she considers it “an absolute honor and privilege” to serve those in the global endometriosis community. Her goal is to help improve the quality of life for those affected by endometriosis by increasing access to quality excision surgery, promoting disease education, facilitating research, elevating endometriosis as a public priority, and bridging the gap between science and shareholders - so others will not suffer as those who came before them.
A Long & Painful Journey
After suffering silently for many years - long before the days of social media and the Internet presented networking and immediate access opportunities for those struggling with endometriosis - she routinely and readily shares her story time and again in an effort to assist others, speaking for those who have not yet found their voice. Presenting in adolescence with symptoms that increased in severity over the years, she was ultimately diagnosed with what would become an arduous and lengthy battle with advanced stage 4 disease and infertility. "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."
After years of debilitating pain and symptoms - including 6 years of infertility, more than 20 surgical procedures, alternative therapies and countless rounds of failed medical suppressive treatments like oral contraceptives and Lupron - she ultimately took her care into her own hands - "in desperation" - and discovered the path that led her to Dr. Albee, the CEC’s Founder (through what she calls 'nothing short of divine intervention'). Undergoing a successful but complex and lengthy excision including of the diaphragm, bowel, rectovaginal cul de sac, ureters, kidney, bladder and beyond, she readily credits Dr. Albee, her predecessor Donna Laux and her Mentor Nancy Petersen, RN (founder of the country's first excision program) with restoring her health and quality of life - and for her son, a "CEC miracle" born less than a year following her excision with Dr. Albee. She later joined the Center's surgical team, something she considers a tremendous blessing every single day. When asked about some of her difficulties with endo, she recalled:
"My issue was not getting diagnosed. I was diagnosed by laparotomy in the late 1980s after 'only' about 5-6 yrs of symptoms. This was in the days of no Internet, support groups were few and far between - literally, we had old-fashioned pen pals through an Association at maybe a couple points across the entire country. I was, at the time, also making a transition from corporate to women's health, where I had been involved part-time up to that point through freelance consulting and writing. We all worked in a silo as far as endometriosis was concerned, and the lack of access to information - and authoritative education - was staggering. Still, my biggest problem was not diagnosis, but treatment of my disease...and the way in which I was dismissed by the 'best' healthcare providers in the country. Here I was with a huge surgical scar from hip to hip across my pelvis that proved something was wrong and I wasn't making it up, pain that remained a steady 12 on a scale of 1-10, and no one could give me any answers. Why?? Nor did they seem to care. I remember in my early twenties sitting across the desk from a doctor - then largely regarded as "the" preeminent fertility specialist in the United States at the time - who told me callously, at the cost of $650 an hour, to have a hysterectomy immediately and that I would never have a chance at children," she said. "I missed my best friend's wedding. I spent much of my own honeymoon in a foreign country curled up in a hotel bed. I missed work - thank God for my understanding boss. The nurses at the university medical center came to know me by first name, yet I missed social engagements in 'real life' all the time...I missed a lot of my life. What my partner put up with during those years is a travesty - no one signs on for that, but he stuck through it all. These are things this disease steals from you - and those you love, and who love you - which you can never get back. EVER. Yet, my story is not unique and is far from the worst, and similar ones are still being told by countless others all these years later...that needs to change - NOW."
Ultimately later undergoing a hysterectomy/bilateral salpingo-oophorectomy to treat adenomyosis and leiomyoma, she continues to be inspired each and every day by the women and girls who live with endometriosis – and the ones yet to be diagnosed; truly considering it an honor to serve the endometriosis community in any way she can. When asked what drives her tireless passion even now, all these years later, she continued: "No woman or girl should still be going undiagnosed in these modern times of advanced medicine for a decade. A decade...or even longer!" she said passionately in a recent featured interview. "They shouldn't be told pain is normal or in-your-head. 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. So - if that means I have to tell my story over and over, about how I literally almost couldn't leave my house for years, for fear of pain and other symptoms, or talk about cripping bowel pain in polite company, or regale the public at large - much to my husband's chagrin - with tales of how endometriosis causes excruciating pain during sex, or share my pain of infertility, then so be it. Someone out there will benefit, and that's all that matters."
Professional Activities & Board Appointments
In addition to her primary role as the CEC's Surgical Program Director, Heather continues her extensive involvement in the Laparoendoscopic surgery, biotech, clincal and research communities. In addition to networking with patient and professional constituencies to establish research projects, focus studies, new product development and clinical trials, she provides a number of comprehensive services to the women’s gynecologic health industry ranging from patient relationship optimization to the development, expansion and enhancement of services designed to improve delivery of care and provide both lay and clinical education. Ms. Guidone has also donated her time to the Endometriosis Research Center since it was founded in 1997.
In 2013, she appeared on the Emmy® Award-winning Lifetime Television network in a feature segment raising awareness and providing endometriosis education to the network's 98 million subscribers. She has also held numerous consultancies with many global institutions over the years including Tamer Seckin, MD's and international celebrity Padma Lakshmi’s Endometriosis Foundation of America, where she served a three-year term as the EFA’s consulting Director of Education & Industry/Research Liaison and helped implement the Foundation's global mission. She is also pleased to donate her time to the world's leading disease portal, Lone Hummelshoj's endometriosis.org, as an Associate Editor, and recently finished out a two-year, elected appointment to the Executive Board of the American Society for Reproductive Medicine's (ASRM) Women’s Council. Heather was appointed in early 2013 to the prestigious President's Council of the National Patient Advocate Foundation, the country's leading national non-profit organization exclusively devoted to engaging members of Congress, the Department of Health & Human Services and various coalitions to coordinate efforts to implement and support legislative and regulatory remedies to obstacles to healthcare access at the state and federal levels. Additionally, she was one of the two exclusive invitees to Co-chair and present for the first time on endometriosis in Washington, DC to the legislature at the annual Women in Government's Health Summit. This critical event, lauded by state and federal legislators alike, led to the creation by the Women in Government Foundation of the first-ever “Legislative Toolkit” now used in the United States for the disease. She is also pleased to support the mission of the Nezhat Family Foundation 'Million Women March for Endometriosis', the largest event of its kind which strives for awareness, education and legislative advances in the disease.
Heather is a member of the American Academy on Communication in Healthcare; the Society for Menstrual Cycle Research, where she has served as a keynote speaker on endometriosis as a critical component of women's menstrual health, most recently at the Society's gala affair honoring the legendary Gloria Steinem; 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; AAGL (formerly known as the Association of Gynecologic Laparoendoscopists), where she sits on the AAGL Special Interest Groups for Endometriosis and Pelvic Pain and serves as a Congress Abstract Reviewer; as well as many other professional societies. She routinely participates in a number of pelvic health, reproductive care and female patient education cross-collaboratives across the globe.
As a Women’s Health Educator, she holds various clinical and professional Certifications, ranging from PeriOperative Standards & Recommended Practices and Operating Room Protocols, Health Education, Minimally Invasive Surgery Protocols to Med-Surg, Anatomy & Physiology, Healthcare Journalism, Medical Writing, Healthcare Management and more from such respected institutions as Rutgers University School of Adult Continuing Education, Sacramento State College of Continuing Education and Columbia University School of Professional Continuing Education. She routinely maintains extensive continuing education on endometriosis and women's reproductive health, earning credit hours through AAGL, ASRM, AORN, ARHP and other certified CE providers. She is also a nationally Certified Clinical Wellness Coach (CWC) trained in application of the Transtheoretical Model to Health Education. A frequently invited writer and speaker, she has contributed substantial content and lectures to many events, prominent books, and publications on health and advanced gynecology. Heather has also worked with the country's foremost biomedical communications firm for nearly two decades as a Clinical Education Medical Writer (CME) & Consultant on a myriad of professional Medical Education healthcare modules. An accomplished clinical writer, she has developed countless endometriosis, gynecologic surgery, surgical, fertility, breast cancer, reproductive and general women’s health education modules in both the consumer-oriented and professional sectors of the health industry; her work has been featured in innumerable publications and resources ranging from the National Women with Disabilities Task Force to the Association of Professors of Obstetrics & Gynecology, from Electrosurgical training manuals to RedBook Magazine and Dr. Oz's Sharecare platform, along with many others, as well as select Industry partners.
She also ghostwrites for several prominent academic and medical leaders, and serves as Editor for numerous lectures and countless slide kits, scripts and more presented by professional colleagues at various symposia and international meetings. In addition, she has also authored immeasurable materials used by various organizations across the globe. As a member of the World Endometriosis Society Montpellier Consortium, comprised of 56 representatives from 34 universal organizations, she contributed to the first Global Consensus on the Management of Endometriosis [Johnson, Hummelshoj, et a. Consensus on the Current Management of Endometriosis. HumReprod. 2013 Mar 25]. Recently, she served as lead author on the most robust, authoritative monograph produced to date for medical school faculty to use to supplement training of residents and students, and for healthcare providers to use to enhance their knowledge of endometriosis-related care [Diagnosis & Management of Endometriosis: Pathophysiology to Practice. Association of Professors of Gynecology & Obstetrics, 2013]. She also previously served throughout the 1990s as a Health Consultant to America Online in their then newly-launched women’s health division, and wrote an invited, nationally syndicated column for Thrive@Health.
Heather continues to serve a cross-organizational initiative for the global establishment of multiple ‘Centers of Excellence’ for the research and surgical treatment of endometriosis, and has a committed interest in early intervention among the adolescent pelvic pain population. To that end, she continues to teach about endometriosis to students from 7th grade to university to post-grad level and routinely presents lectures at associations, corporate, community and other health-related symposia including Deloitte & Touche's award-winning corporate wellness initiative and OmniGuide Surgical's National Sales Meeting. She was also responsible for the planning and execution of Padma Lakshmi's First Annual School Nursing Endometriosis Education Conference - the first event of its kind to ever be held in the United States - in late 2011. She also chaired the Foundation’s annual scientific conference in 2011; an event she has contributed to the planning and execution of - and participated in - each year since its inception in 2009.
A strong advocate for legislative and insurance industry reform in endometriosis in order to minimize the ubiquitous barriers to care that exist in endometriosis and chronic pelvic pain, she continues to promote testimony at state and federal levels, including data concerning dioxin exposure as related to endometriosis, read before the California State Legislature at the invitation of the general Assembly in support of AB2820 (a consequential bill calling for the independent investigation of toxins in feminine hygiene products). She also co-authored the text contained in various endometriosis legislative Awareness Resolutions passed by local and national lawmakers, including House Concurrent Resolution No. 291, a groundbreaking National endometriosis awareness Resolution. The Resolution was unanimously passed by the 107th Congress of the United States, and is the first and only such formal Legislation ever to pass in the United States concerning endometriosis to date. Since that time, the states of New York, Utah, New Mexico, Colorado, Florida, Michigan, California, Wyoming, Pennsylvania and others have also passed one or more subsequent statewide Awareness Resolutions.
Heather has been included in "Who’s Who among American Women" and is a former member of OBGYN.net's Women & Patients Advisory Board, as well as the previous editor of EndoZONE and Endometriosis Pavilion sites. She has served as a sixteen-term judge by invitation for the National Health Information Resource Centers celebrated "World Wide Web Health Awards" Program. In 2012, she was chosen by the Office on Women's Health in the U.S. Department of Health & Human Services as their “Spotlight on Women’s Health.” She is most proud of her 2012 Win of the National Women’s Health Foundation’s “Passion for Pelvic Health” Award, calling the honor “an acknowledgement of all women and girls with endometriosis who struggle to be heard every day.” Upon accepting the award in the honor of those with the disease, she told the sold-out audience "...despite 176MM women and girls suffering in silence from this insidious disease, endometriosis remains largely regarded and treated like the proverbial neglected stepchild of gynecology across the medical community. The time to realize the unfathomable impact of this disease across our global society on a personal and financial level is NOW."
Heather continues to be sought after by various media and advocacy groups for her expertise and activism in reproductive health, endometriosis and chronic pelvic pain pathologies, and is routinely invited by others to edit, contribute content to, endorse and provide forewords to their own publications, including "Coping with Endometriosis" by Glenda Motta, RN, MPH and Robert Phillips, Ph.D., "Living well With Endometriosis" by Kerry-Ann Morris (HarperCollins), the best-selling "Endometriosis: 100 Questions & Answers" by David B. Redwine, MD, Dr. Susan Evan’s critically acclaimed “Endometriosis & Other Chronic Pelvic Pain” and most recently, “Healing Painful Sex" by Deborah Coady, MD and Nancy Fish. Her own "Letter from Survivors," a poignant insight into the life of the endometriosis patient, has received international acclaim and been extensively shared by more than a million and a half unique sources, both online and off, and was presented on the steps of the Lincoln Monument in Washington, DC at the country’s first national EndoMarch on Washington in 2000. Additionally, her work in healthcare has been featured in the book, "Real People, Real Stories: How the Internet is Touching Lives." She routinely appears as an invited guest on many media outlets both online and off, including radio shows and press features dedicated to women’s health and infertility. Heather is also often called upon by health media to dispel disease myths and debunk outdated recommendations, promoting evidence-based medicine for timely diagnosis and efficacious intervention; including but not limited to co-authorship of an invited rebuttal to Yale University's popular study in the Journal of Gynecologic & Obstetric Investigation [Guidone, Marvel. Sexual Activity, Orgasm & Tampon Use are Associated with Decreased Risk of Endometriosis. Gynecol Obstet Invest. 2002;54(2):64-5]. She has also been profiled in a number of publications, ranging from Atlanta's popular Season Magazine to Redbook Magazine, to Lifetime TV's award-winning Balancing Act show to a featured multi-page segment in a division of Dow Jones Media, which highlighted her efforts to improve the lives of those with the disease.
Outlook for the Future
Having spent more than two decades in the industry, Heather’s tireless passion for women’s health and well-being continues, driving her efforts across the patient support, advocacy, surgical and scientific agendas as related to women’s healthcare needs both behind the scenes and out front. From writing substantive educational content to educating healthcare providers and the public, to coordinating research studies to lobbying insurance companies for proper coverage of disease treatment, she continues her endeavors to meet the domestic and international demands of the women's reproductive health community across the global sector, collaborating with and contributing to like-minded initiatives in order to promote advances in the “art and science” of the disease. She awaits the day when endometriosis is a household word, quickly diagnosed and readily, effectively treated so that it does not continue to debilitate yet another generation of women and girls.
She feels absolutely privileged and blessed to work for all those affected by the disease. Heather maintains her dedicated commitment to serving the needs of all those around the world who may be struggling by endometriosis - and those who care for them - and invites contact from anyone wishing to learn more about the CEC via email at Heather@centerforendo.com or by calling the Center toll-free at 866-733-5540 (outside the United States, +770-913-0001) – or join the CEC on our social media platforms at Pinterest (http://pinterest.com/ctrforendocare), Twitter @CtrForEndoCare, LinkedIn and Facebook at http://www.facebook.com/centerforendometriosiscare.