The end of March marks the end of Endometriosis Awareness Month, but millions of women will continue to suffer in silence from a disease that causes pain “worse than childbirth.”
“Endometriosis is a puzzling hormonal and immune disease affecting girls and women in their reproductive years.” Mary Lou Ballweg, President and Executive Director of the Endometriosis Association said in her book, “Endometriosis: The Complete Reference for Taking Charge of Your Health.”
In 1993, the Endometriosis Association began utilizing the month of March to raise awareness for the, at times, debilitating disease that affects approximately 6.3 million women in the United States and between 89 and 176 million women worldwide.
“The Association was instrumental in bringing about the legislation that created it as a National Health Observance,” Carol Drury, Education Program Coordinator & Associate Director of the Endometriosis Association said, “It is a month where we focus on awareness of the disease and the impact on women with endo and those who care for them.”
Women with the disease experience pain. They may experience pain with menstruation, pain with bowel movements, during sexual intercourse, and pain in between cycles.
“In its severe form, [endometriosis] has been described as worse than childbirth.” Lorna Garano, press contact Dr. Cook, a gynecologic surgeon who specializes in the disease, wrote in the press release for Cook’s upcoming book “Stop Endometriosis and Pelvic Pain.”
There is no cure for the disease and it is not known what causes it.
“Misinformation and ineffective treatments abound,” Dr. Cook stated in his release. “Endo is a complex and poorly understood condition even among the physicians who are supposed to provide care…while individual physicians do their best, the reality is that our healthcare system offers only marginally effective prescription medications, which come with significant side effects.”
Women suffering from the pain may find theirs cries for help going unheard when seeking medical assistance.
“Many have been told by doctors that their pain is ‘all in your head.’ Many times when women with endo go to the emergency room because their pain is so intense, they are labeled as ‘drug seeking,’ and turned away,” Drury said.
The lack of help can leave women feeling alone and misunderstood.
“Because you can’t see endo, many women with it look normal even though they are in agony,” Garano wrote in Dr. Cook’s release. “As a result, even well-meaning people can doubt the severity of the pain and wonder if sufferers are exaggerating when they try to explain how intense it is. This erodes a woman’s potential support system and can leave her feeling more isolated, frustrated, and hopeless.”
When a woman’s support system is gone, she can be left with nothing.
“Women who once saw themselves as vibrant, active, and competent become isolated from the pain and can feel that their identity has been stripped away and redefined by endo.” Garano said in the release.
Students who were interviewed on campus were unfamiliar with the disease. Dental hygiene major, Courtney, who declined her last name, said she has heard of the disease “briefly in my health classes.”
Hormonal treatments such as oral contraceptives and progesterone drugs are used to try to treat the disease, which has no cure. Invasive surgery is also employed.
“Hysterectomy and removal of the ovaries has been considered a ‘definitive’ cure, but research by the association…has found such a high rate of continuation or recurrence [of endometriosis],” Ballweg wrote in her book.
The Endometriosis Assoc
iation remains hopeful for their endeavors with this awareness month.
“One of the most frustrating things for a woman with endo is that others don’t believe their pain is real. They may think the woman is just shirking her duties,” Drury said. “Awareness will create understanding, which we hope will lead to greater support by employers and families.”
Karin Jensen and Melissa Natividad contributed to this article.