In the 16 years since she was diagnosed with the disease, Cape Coral resident Rose Furio has undergone 14 surgeries and faced daily chronic pain as a result of her endometriosis.
On March 13, she joined hundreds of others affected by the condition to take part in the first ever Million Women March for Endometriosis. Held at the National Mall in Washington, D.C., the event coincided with the first Worldwide Endo March, which involved over 53 cities around the globe.
"I know how much I suffered," Furio said Thursday. "I know it's too late for me because the damage is already done. I'm marching for the younger generations - the earlier the diagnosis, the better."
Endometriosis affects more than 5 million women in the United States and is one of the most common health issues.
The U.S Department of Health and Human Services stated that it occurs when the tissue lining the uterus grows outside of the uterus, on other organs or structures in the body.
The disease is most common among women in their 30s and 40s, according to officials.
The most prominent symptom of endometriosis is pain in the lower abdomen or pelvis, or even the lower back, mainly during a woman's menstrual periods.
Other indicators include pain during or after sex, painful bowel movements or urination with periods, and infertility or inability to get pregnant.
Furio, 56, had pelvic pain and heavy blood clots back in the 1970s but thought it was normal.
"It was getting more painful as I got older," she said.
In the following years, doctors misdiagnosed her symptoms and wrote off her complaints about the pain as an overreaction. In the 1990s, her gynecologist prescribed medication to ease the agony.
"Every time my period came, the pain was unbearable," Furio said.
Sometimes she would vomit or have to miss work because of the level of intensity.
"This was going on for years, then my doctor started getting suspicious of the pain," Furio said.
After undergoing a blood test, her doctor determined that cancer was the likely cause and ordered a hysterectomy. While in recovery, she was told there had been no cancer - it was endometriosis.
The year was 1998.
"I got diagnosed late," Furio said.
Today, she suffers from chronic pain and short bowel syndrome. It is painful to sit or stand for long periods of time, and she has malabsorption in that her body does not absorb proteins and fats.
"There's so many misconceptions about the disease. It doesnt just affect the reproductive organs, it affects the whole body," Furio said, noting that is one reason she got involved with the march.
In preparation for the event, Furio and two other women became precinct managers in Florida. They worked to locate those affected by the disease and helped to spread the word about the march.
"Not enough education is out there," she said of endometriosis.
Organizers estimated that about 2,000 people attended the march in Washington, D.C.
"I met so many girls," Furio said. "We all have the same symptoms. We all have the same stories."
Musical artist Sheryl Crow sang, and Stephanie Caroline from "Law & Order" spoke.
According to the march's Web site, the goal was to empower by uniting women and their supporters against endometriosis and to educate the public and medical community by raising awareness about the disease. It also aimed to effect change by pushing for a cure and improved screenings for the disease.
"I am learning, and I want to help share and educate the women in this area," Furio said.
A Million Women March for Endometriosis is tentatively planned for 2015 in Washington, D.C.
Those who want to get involved in community outreach or next year's event, or who would like additional information on endometriosis, can contact Rose Furio at firstname.lastname@example.org.
People can also visit: www.millionwomanmarch2014.org for more information.