The Endometriosis Foundation Of America’s Multi-prong Approach to Increasing Endometriosis Awareness, Improving Medical Knowledge and Research Raises the Bar For the Women’s Reproductive Health Community
Endometriosis is not well understood. This is true for patients, family members, employers and much of the medical community. A consortium of endometriosis specialists is needed to bring their extensive experience to increase the necessary awareness of a disease that is frequently misdiagnosed for years. The longer a woman has to wait for a proper diagnosis, the more damage the disease can do, and if treated insufficiently, it can actually become worse.
Many leaders in women’s reproductive health still fall short when it comes to championing the advancement of endometriosis research, medical training and awareness. However, one group is directing a great deal of energy to ensuring that endometriosis gets the attention is deserves. The Endometriosis Foundation of America efforts are multi-faceted.
“Early diagnosis is the best prevention for endometriosis because it allows for early intervention,” said Dr. Tamer Seckin, co-founder of the Endometriosis Foundation of America. “Right now endometriosis is not a part of the current medical school curricula for Reproductive Health,” said Dr. Seckin. “It needs to be included and I will continue to lobby for its inclusion. But until that time other ways for increasing training need to be pursued.”
Bridging the Information Gap Earlier
Dr. Seckin and Padma Lakshmi, another of the EFA’s co-founders, have taken the cause to heart. Dr. Seckin travels across the United States and abroad giving lectures, and teaching the art and science of endometriosis surgery. Ms. Lakshmi speaks publicly about her experience through an array of channels including mass media, political arenas, and public events, allowing her to reach a wide audience.
The EFA hosts an annual medical conference in NYC to talk about new techniques and debate issues about the disease, present hands-on surgical training, recognize practitioners who are making strides in diagnosing and treating endometriosis, and advocate for policy change. This three-day event boasts two days dedicated to education for professionals in the field, with the third day focused on patient education.
“The importance of early diagnosis and timely intervention is one of the EFA’s core values and is consistently reflected in all of the organization’s programmatic activities. Specifically, The ENPOWR Project is the country’s first educational program focused on raising endometriosis awareness among the adolescent population for the purpose of early diagnosis. ENPOWR stresses the importance of self-advocacy when dealing with reproductive health, and arms both boys and girls with the tools needed to navigate a challenging healthcare environment.”
Increasing Accessibility to Proper Endometriosis Care
Additionally, the EFA collaborates with hospital systems to host educational events for both patients and medical professionals, and educates clinicians from accessible and affordable reproductive health care clinics to ensure adolescents receiving ENPOWR’s education can seek appropriate treatment.
Support for Women With Endometriosis Still Vastly Needed
“Unfortunately, endometriosis often carries a burden that extends well beyond its symptoms, and the negative impact on quality of life can be its most detrimental component. Patients’ relationships with family, classmates, colleagues and romantic partners are commonly diminished as a result of persistent pain, and chronic absenteeism can result in poor outcomes in academics, careers, and personal endeavors.”
Just glance at any online endometriosis support group, and it is clear that there needs to be more coordinated effort to ensure women with endometriosis have the support necessary to get family members and employers on board with understanding the extent of the disease. By increasing endometriosis awareness, it will help to remove the stigmas associated with the disease that so often keep women from opening up and seeking help from true experienced endometriosis specialists.
Too many doctors are recommending hysterectomy as a “cure.” Unfortunately, Endometriosis has no cure. The most effective treatment, with the best long-term pain management is endometriosis excision, or resection performed by a minimally invasive GYN specialist. Once women are diagnosed and are able to get treatment, the relief of being able to return to daily activities is life changing.
“It helps to talk to others who have this disease. The EFA does offer literature specifically written for loved ones supporting a woman facing endometriosis. Endometriosis is not just a woman’s disease; we like to think of it as a family issue. Because, when a woman is down with pain everyone in her household is affected.”
Learn more about efforts being made to improve the lives of women and teens who suffer from endometriosis in Endometriosis Champions: The Future of the Fight and Teen Health: Is Period Pain Something More Serious?
ABOUT THE CENTER FOR INNOVATIVE GYN CARE
The Center for Innovative GYN Care is dedicated to providing information and materials for women to help navigate the complicated healthcare system. Our minimally invasive surgical specialists have seen firsthand the pain and anxiety women with endometriosis face before getting a proper diagnosis, evaluation and treatment. We have also seen what delaying a diagnosis and surgery performed poorly can do to a woman. The longer a woman suffers with endometriosis, the likelihood of extensive damage to her reproductive organs increases.
Until there is a cure, it is essential that advocacy and research efforts like those mentioned above are expanded. CIGC is working closely with endometriosis awareness organizations to ensure that our patients have access to the support they need, and have the most up-to-date information about the most effective minimally invasive endometriosis removal to manage pain, bleeding and infertility.
Patients need tools to help them make the best choices about choosing a surgeon. We have created a list of questions for women to take with them to a doctor’s office, with guidance on what to expect. This one-sheet helps patients decide if the doctor and treatment is right for them.
CIGC minimally invasive GYN surgical specialists Dr. Paul MacKoul, MD and Dr. Natalya Danilyants, MD developed techniques to perform endometriosis excision or resection using only two 5MM incisions. Using DualPortGYN, our surgeons can thoroughly remove all endometriotic implants and lesions in an outpatient setting, allowing women to return to their lives faster, with less pain.
CIGC’s specialists also train GYN surgeons around the country in innovative techniques and procedures that optimize GYN surgical care.
BOOK A CONSULTATION
GYN surgical specialists can often see women sooner because they are focused entirely on surgery. Each endometriosis patient gets detailed, in depth attention from Dr. Natalya Danilyants and Dr. Paul MacKoul. This personalized care helps patients understand their condition and the recommended treatment so that they can have confidence from the very start. Our surgeons have performed over 20,000 GYN procedures and are constantly finding better ways to improve outcomes for patients.
CIGC TRAVEL PROGRAM
Even if you are not from the DC area, many patients travel to The Center for Innovative GYN Care for our groundbreaking procedures. We treat women from around the world who suffer from complex GYN conditions.
Learn more in our travel program.