At age 11, the excruciating pain began.
“I actually started my [first] period when I was in school,” Melanie Reyes, now 44, of West Palm Beach, Fla recalled. “The nurse came to me when I was laying on the floor of the bathroom, writhing in pain and vomiting, and said, ‘Oh, you just have your period. You just need a tampon.’”
For years, Reyes would become debilitated with monthly pain and vomiting. Yet, she was repeatedly told the same things: “bad menstrual cramps,” or “a rough period.”
It wasn’t until six years later, at the urging of her college nursing instructor, that Reyes sought medical help for her symptoms.
“She finally said to me, ‘This is not normal for you to have this much pain and vomiting with your period. You need to be helped,’” said Reyes.
According to a new research, Reyes is among a disproportionately large number of African-American women whose chronic pelvic pain was misdiagnosed.
AN AGGRESSIVE DISEASE
It is thought to occur when cells from inside of the uterus travel to other parts of the abdomen — instead of leaving the body — during a menstrual period. Those cells can then attach to the woman’s organs and continue to spread or grow larger with each menstrual period.
Over a short time, a woman with endometriosis can develop internal scarring and large growths, leading to painful menstrual periods, painful intercourse and intestinal symptoms.
One-third of women with endometriosis are infertile.
Despite being only 19 years old, the endometriosis had spread significantly inside of Reyes’ abdomen and doctors were already concerned about her ability to have children.
“I feel like if I was given the right advice at a younger age,” said Reyes. “My life would have been very different.”
Endometriosis can only be diagnosed with certainty through a laparascopic examination where the growths are visualized and a biopsy is taken. For that reason, timely diagnosis depends on whether a doctor suspects endometriosis strongly enough to take the woman — whether adolescent or adult — to the operating room.
According to Reyes, a hesitation to use laparascopy early and aggressively, especially among young women, requires a culture change.
“The thought of having a young woman go in for surgery is something that is hard for people to deal with,” Reyes said. “I’m sure my parents couldn’t get their heads around taking an 11-year-old into surgery.”
But, she also urges doctors to view removing endometriosis the way they would remove cancer. “It’s not seen as being as serious and life threatening, so doctors and parents will hesitate,” said Reyes. “But, disease is disease, it doesn’t really matter the age.”
BLACK WOMEN LEFT OUT
In research dating back to the 1970s, endometriosis is described as a condition that rarely affects African-American women or, if it does, affects them at the same rate as white women.
However, a study presented yesterday out of Howard University Hospital found that African-American women with endometriosis are often misdiagnosed, and that more of these women are suffering from the condition than the old statistics indicate.
The reasons for this discrepancy are unclear, but researchers found a higher rate of misdiagnosis among women who also had fibroids — a condition commonly found in African-American women.
Fibroids — noncancerous tumors on the uterus — are easier to find and diagnose than endometriosis, and the two conditions cause similar symptoms.
According to this data, if a woman with endometriosis also had fibroids, it is more likely that the endometriosis would be missed, and the symptoms blamed on the fibroids.
Dr. Kevin Scott Smith, director of minimally invasive gynecologic surgery at Howard University Hospital and author of the study, says doctors have to be more suspicious of endometriosis, especially in this subset of patients.