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.
VIDEO produced & edited by Janelle Richards—>
OUT OF OPTIONS
Seeing a need for more research on the topic, 22-year-old graduate student Arielle Dance channeled her own traumatic experiences with endometriosis into a project looking at how women of color view the condition.
”[Endometriosis] has killed dreams of a family in the future,” Dance explained. “And it has kept me locked away for many nights and weekends.”
Like Reyes, Dance began having menstrual periods at age 11. For four years, she endured pain, heavy bleeding, vomiting, and fainting with every menstrual period.
“I thought it was normal,” Dance said. “As a teenager, I was often told that it was all in my head.”
A week before her 15th birthday, Dance had a laparascopic procedure that both diagnosed the condition and removed some of the growths. But, with no pain relief, even after hormonal treatment, Dance’s doctors performed a second surgery.
For three years following that procedure, Dance’s symptoms remained tolerable. However, during her sophomore year of college, the symptoms returned, and in two years, she suffered through three more unsuccessful surgeries.
Complications from her last surgery mixed with risks from the hormonal treatments left Dance in intensive care for a week from a blood clot in her lung.
“It was clear to me that I would no longer be able to treat my disease with hormones or surgery ever again,” Dance said. “So, now I am helpless to this disease.”
Out of treatment options, Dance is now focused on managing her pain, while continuing her studies at Suffolk University in Boston.
A DIFFERENT FUTURE
At the time of her diagnosis, Reyes was finishing nursing school as a licensed practical nurse.
“I haven’t really followed the career path I would like, because I don’t feel like my body is reliable,” Reyes said.
Her chronic pain and multiple surgeries derailed her plans of completing the next level of nursing — her registered nursing degree.
Reyes has had 11 surgeries to clean out scar tissue or to remove affected organs.
She had brief relief after her hysterectomy, but a small amount of endometrial tissue remained, and “it grew back with a vengeance,” Reyes said.
Soon, her endometriosis continued to grow until it covered her kidneys, bladder, ovaries and intestines. In addition to her back and abdominal pain, her kidney stopped functioning properly.
Her condition deteriorated, and she could no longer work as a nurse.
“Not having income for two years, I almost lost everything I had,” said Reyes.
With health insurance refusing to cover more surgeries and a dire financial situation, Reyes wrote to Dr. Tamer A. Seckin of the Endometriosis Foundation of America, offering her body to endometriosis research in exchange for his services.
“Then, I got a call from him,” Reyes said. “Without interventions, I would have passed away from the disease.”
The surgery was a few months ago. Since that surgery, even with complications from surgery, Reyes no longer has endometriosis pain.
UNIQUE BIASES – NURSE AS PATIENT
Despite being in the medical field herself and a straight-A nursing student, when Reyes entered the doors of the hospital as a patient, things changed.
“It’s just offensive,” Reyes recalled. “Individuals I worked with, or knew as a student, thought I was seeking pain medication or being overly dramatic.”
She tells a story from earlier this year, when, after open surgery, unbeknown to Reyes or her providers, her pain medication pump stopped working properly. She continued to ask for more pain medications, but the staff was suspicious, so she was repeatedly told to wait. After four hours of pain, Reyes, with her nursing background, realized the machine was broken. She hadn’t received any pain medicine for four hours following a major surgery. Only then, did her pain needs get addressed.
“There’s a perception that if you are of color, you are already predisposed to being drug-seeking,” Reyes said. “They first look at your color and you have to persuade them that you’re not what they’re thinking.”
LEARNING FROM HER JOURNEY
According to Reyes, she would not have made it through this journey without Wil, her husband of 23 years, and her network of friends and family.
“They kept me out of the depths of a depression that I wouldn’t have been able to get myself out of,” Reyes said.
Reyes and her husband are planing to do more endometriosis advocacy, in an effort to help empower other women with the condition, especially women of color, and their families.
However, she is clear that others do not have to repeat her journey.
“They don’t have to live a life of pain,” Reyes said. “They don’t have to go through multiple surgeries. They can actually know what the different symptoms are, and identify them within themselves and request to have a laparoscopic examination done.”
VIDEO produced & edited by Janelle Richards>