Las Crucen Dolores "Doe" Gallegos, 47, suffers persistent, often-crippling pain, all thanks — or no thanks, rather — to a disorder called endometriosis.
Gallegos was first diagnosed when she was a student at New Mexico State University in 1990. She was making frequent trips to the student health center because of debilitating abdominal pain. She hit a lot of dead-ends before she found out the actual cause. Her pain was initially attributed, incorrectly, to menstrual cramping.
"I couldn't walk," Gallegos said, describing the impact of the pain. "At NMSU, a doctor told me: 'Just take a handful of Advil.'"
But a physician in El Paso was finally able to determine the real cause as endometriosis, a disorder in which the tissue that normally lines the uterus grows outside the uterus in the body cavity.
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"I didn't even know what endometriosis was when I was diagnosed," she said. "In 1990, I didn't know anybody who had endometriosis besides myself."
For Gallegos, that was the start of a long journey full of not only physical pain, but emotional disappointments caused by the disease. She's endured 13 surgeries, failed treatments, financial struggles because of high medical expenses and, perhaps the most devastating to her, infertility.
RAISING AWARENESS IN MARCH
An estimated 176 million women worldwide have endometriosis — about one in 10 women during their reproductive years. March marks Endometriosis Awareness Month across the globe.
As the Mayo Clinic explains on its website, the exact cause of endometriosis isn't known.
Each month, the lining of the uterus — tissue called endometrium — normally thickens in preparation for possible pregnancy. If pregnancy doesn't happen, the lining is shed, resulting in a woman's monthly period.
One theory suggests a possible cause of endometriosis is menstrual fluid and endometrial cells moving the wrong way out of the uterus, flowing out the fallopian tubes and into the body cavity where there's no exit. Endometrium can then start to grow outside the uterus on other organs or tissues.
SYMPTOMS OF ENDOMETRIOSIS
Some of the possible symptoms of endometriosis include painful menstruation, painful intercourse, painful bowel movements, excessive bleeding during menstruation and bleeding between periods, according to Mayo Clinic. Infertility is another possibility, because endometrial tissue and damage done to organs or tissues because of it, can interfere with normal reproductive processes.
Gallegos said that was a devastating part of her own struggle with the disease.
"It's a huge emotional thing," Gallegos said. "I took it very hard not being able to have kids."
Another characteristic of endometriosis is that it can travel to other organs in the body, Levatino said. It's rare, but it happens.
"Endometriosis has been found in the brain, in the lungs," he said. "You would think it was a cancer that way, but it's not. It travels probably in the blood system or lymphatics — we're not sure which — and it can show up in other areas. Normally you would associate that behavior with a cancer. But it is not a cancer."
While most people with endometriosis are women, in rare instances it can affect men.
The only way to diagnose endometriosis with certainty is through laparoscopy, a minor surgery, according to Endometriosis.org.
DEALING WITH THE PAIN
In the past 28 years, Gallegos said she's undergone 13 surgeries — 10 of which were directly because of the endometriosis and three of which were to correct mistakes or complications from earlier surgeries. One of the surgeries was a hysterectomy, the removal of her uterus. She's also taken a range of medications over the years. Once she participated in a trial for a drug. None of the surgeries or medications have been successful in the long term for alleviating her pain, and some of the drugs had negative side effects, she said.
The last surgery Gallegos underwent was five years ago. A specialist in Arizona removed endometrial tissue. For two weeks afterward, the pain disappeared. But it soon returned. Gallegos said she's decided not to have additional surgeries. She's prescribed a painkiller called Tramadol.
"Sometimes it works," she said. "Sometimes it doesn't."
Mostly, Gallegos just attempts to carry on her normal daily routine in spite of the pain.
A lot of women who deal with painful endometriosis also experience depression or hopelessness because their quality of life often isn't good, Gallegos said. Also, some medical professionals don't take their complaints about pain seriously, which doesn't help. Family members, too, can feel hopeless because they feel powerless to help a loved one suffering from the condition.
"Nothing is easy about endometriosis, for sure," Gallegos said. "It wears you down."
Gallegos doesn't consider herself to be an especially strong person. But she's determined not to let her often excruciating condition stop her from leading a busy life. As such, she works full time as a juvenile probation officer. And she's channeled her energy into advocacy efforts, such as fundraising, to boost awareness about endometriosis in hopes of finding a cure.
Five years ago, Gallegos participated in the first-ever national march to raise awareness about endometriosis in Washington, D.C. Women from around the nation gathered for the event, which included a small convention and a performance by Sheryl Crow.
Gallegos said it was uplifting to meet so many other women from different places who shared the common, unfortunate bond of endometriosis. She's participated in each of the subsequent national marches, one of which took place in San Francisco. She's met a lot of new friends who she keeps up with on Facebook. And that's helped to counter the feelings of isolation she and many women with endometriosis experience.
MARCHING IN WASHINGTON D.C.
Ultimately, Gallegos said participants hope to catch the attention of policymakers who can push for strides to be made in research toward a cure for the disease.
"That's why we march, and that's why we want to be seen," she said.
Gallegos and a small group of supporters from Las Cruces — they call themselves Team Doe for Endo — plan to attend the fifth annual Worldwide Endometriosis March this year in Washington, D.C., taking place on March 24. The group has hosted several fundraisers, including t-shirt sales and a recent 1980s night event at The Warehouse Bar in Las Cruces. She said they're nearing this year's goal of raising $3,000 to $4,000.
Gallegos has attempted to start a support group in the past but hasn't garnered enough interest from local residents. She wants to begin speaking to high school or university classes about her experience so other women will be aware of the disease and the possibility that they could be affected by it. She's hopeful a research break-through could turn the tide in the quest for better treatments.
"I don't want anybody to suffer as much as I've suffered," she said.