(Update: Adding video, comments from Nancy Petersen)
MADRAS, Ore. (KTVZ) -- Retired nurse Nancy Petersen is helping change the world of endometriosis and those left in pain by the illness, one Facebook post at a time.
Petersen, now a Madras resident, created Nancy's Nook Endometriosis Education, a self-help website and Facebook group that focuses on endometriosis.
“It’s a very disabling pain," she said Monday. "They develop symptoms similar to acute appendicitis. They develop abdominal bloating, nausea, extreme fatigue.”
Petersen provides help and support for living with endometriosis in the Facebook group to women all around the world.
She herself has suffered from it.
“For the next 17 years, I went through repeated episodes of cysts breaking and acute abdominal pain, and just miserable, miserable periods,” Petersen said.
In the early 80's, when Petersen was working as a nurse for St. Charles Bend, she met Dr. David Redwine, who she says is a pioneer of endometriosis research. Together, they established the first laparoscopic excision program for endometriosis in the U.S.
“His research began to change where we looked for the disease, and then what we did about it,” Petersen said.
Now, years later, she still believes that not enough research has been done to help treat and find a cure for endometriosis.
According to a recent NBC News report, endometriosis affects 1 in 10 people with uteruses and takes an average of 10 years to be diagnosed, due to such minimal knowledge about the disease.
Nancy's Nook Endometriosis Education Facebook page has more 125,000 followers.
Petersen says she wanted the Facebook page to be a resource for women, to let them know they are not alone.
“I think part of it is compassion and hope, and that we understand their experience -- and we believe them," she said. "That in itself is the most powerful thing I can do for patients with endometriosis is to believe them, teach them and help them find something else,” in terms of treatment.