By Ed Coghlan
The pain of Endometriosis is well known to women who suffer from it.
It affects 10% women of reproductive age globally and has prompted the collaboration between two leading nonprofit organizations dedicated to the improvement of women’s health; the Endometriosis Foundation of America (EFA) and the American College of Obstetricians and Gynecologists (ACOG).
The issues they want to explore?
- Collaborating for the full-scale expansion across all states of the EFA’s adolescent education program, The Endometriosis: Promoting Outreach and Wide Recognition (ENPOWR™) Project.
- Implementing more robust efforts to improve the standards of diagnosis and care associated with endometriosis, particularly among young adults so as to reduce the current delay to diagnosis in the field of Adolescent Gynecology.
- Improving training standards for surgeons on the techniques specific to endometriosis, such as proper recognition and excisional removal of the lesions.
- Producing updated practice guidelines for the diagnosis and treatment of endometriosis.
Tamer Seckin, MD, FACOG, and Founder of Endometriosis Foundation of America (EFA), EFA Medical Director, Dr. Harry Reich, a pioneer in minimally invasive surgery for treating endometriosis; Dr. Ray Wertheim, endometriosis specialist; and Theresa Davidson, EFA Managing Director, met with ACOG’s Vice President for Practice, Dr. Christopher Zahn, and Director of Federal Affairs, Rachel Gandell Tetlow are all part of this awareness push.
“I am thrilled about collaborating with ACOG, as it is one of the most influential women’s reproductive health organizations in the nation, with the ability to make a tremendous impact on practice as a whole,” said Seckin. “Early diagnosis is crucial to detecting endometriosis and awareness is key to timely treatment. Working with ACOG, the EFA can expand its awareness campaign nationwide to reach so many more medical professionals and women.”
According to the Journal of Human Reproduction, women who suffer from endometriosis have to wait an average of 12 years before getting a proper diagnosis. “This is unacceptable, and it has to change,” said Seckin. He added, “Misdiagnosis, dump diagnosis and ignoring or dismissing the symptoms of endometriosis, and incomplete and improper surgeries are the main reasons for the long delay in diagnosing, and treating the disease.”
Seckin talked about the pain associated with endometriosis.
“Endometriosis lesions can grow deep and wide, spreading and clinging to a woman’s uterus, appendix, rectum, ovaries, intestines, leg nerves and other parts of the pelvic region. These lesions are like leeches that attach to, reproduce on, and grow on whatever internal organs they find. They are similar to a slow-growing cancer that invades the organs in the pelvis, and in rare cases they can spread to the diaphragm, lungs, kidneys, or brain.”
“Endometriosis causes excruciating pain. This disease always causes inflammation, which can lead to adhesions, scarring, internal bleeding, bowel or urinary dysfunction, constipation, painful intercourse, and infertility. The physical pain can be so unbearable that it leads to psychological pain. A woman’s career may suffer. Relationships with loved ones may become strained. She may have to miss a lot of school, or even drop out. This disease threatens to become a woman’s identity, ruling every phase of her life.”
In March, EFA cofounder Padma Lakshmi met with congressional leaders on Capitol Hill to initiate discussions about more collaborative efforts to facilitate endometriosis awareness. “The collaboration between the EFA and ACOG is the first of what I hope will be many partnerships with the EFA,” said Seckin. “The EFA looks forward to creative partnerships both in the public and private sectors that will help spread the word out about this debilitating disease.”