A life of pain: One Las Cruces woman’s journey with endometriosis

A life of pain: One Las Cruces woman’s journey with endometriosis
Diana Alba Soular, Las Cruces Sun-News
March 1, 2018

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.

“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.

Even today, there are still plenty of gaps in the scientific understanding of endometriosis. But nearly 30 years ago, even less was known about it. Gallegos could only find one book in the library about it. Slowly but surely, she began learning more about the disorder. And today she’s become an active advocate pushing for a cure. She said she’s known more about endometriosis than some of her past doctors — a few of whom had not only a lack of knowledge, but misinformation about it. At least one doctor dismissed her claims of constant pain as a psychological problem, she said.

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.

The cycle that endometrial tissue goes through is under the control of hormones that originate in the ovaries, located next to the uterus, said Las Cruces physician Anthony Levatino, professor of obstetrics and gynecology at Burrell College of Osteopathic Medicine. The hormones disperse throughout the body, he said.

“They’re not just in the lining of the uterus,” he said. “So endometrial tissue anywhere else in the body where it doesn’t belong can respond in the same way as endometrial tissue right in the uterus.”

That means most of the time, the displaced endometrial tissue continues to cycle through the same build-up and breakdown process each month that the lining of the uterus does. However, the residual, unlike tissue inside the uterus, has nowhere to go. The body can absorb this, but sometimes it doesn’t.

Varying effects

With endometriosis, Levatino said endometrium tends to build up around the ovaries because they’re the source of estrogen. It’s akin to “running for the groceries,” he said. In especially bad instances, “cystic masses” grow on the ovaries. 

“When you open those things up, they look like melted chocolate,” he said. “And the reason is that it’s old, broken-down blood. This is one of the reasons that some of these people have a lot of pain.”

Levatino said the amount of endometriosis a woman has doesn’t necessarily correspond to the level of pain she experiences.

“It’s unusual in that sometimes the tiniest little bits of endometriosis can cause the most pain,” he said. “I’ve had patients that were absolutely dying of pain, and you get in with a scope so you can see these areas, and they have literally three pinpoints of it. I had another lady that had so much of it we were scooping it out in handfuls, and she had no pain at all.”

Gallegos described her pain as feeling like a “tumbleweed made out of barbed wire” is inside her and is moving around.

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.”

She said she’s friends with another woman with endometriosis who was pregnant with twins but lost one of them, likely because of the disease.

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. 

Because endometriosis is affected by hormones that control the menstrual cycle, women who do experience pain from the disease may notice it lessen and worsen at different times of the month. 

Gallegos said her pain levels did vary in the earliest years, but that variation has lessened. Now, pain is not as great as it was at some points in the past, she said, but it’s more constant than not.

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.”

Boosting awareness

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.

Residents wanting to learn more about Team Doe for Endo’s efforts can email Gallegos at meandoegreen@hotmail.com.

Diana Alba Soular may be reached at 575-541-5443, dalba@lcsun-news.com or @AlbaSoular on Twitter.

Endometriosis risk factors
• Never giving birth
• Starting your period at an early age
• Going through menopause at an older age
• Short menstrual cycles — for instance, less than 27 days
• Having higher levels of estrogen in your body or a greater lifetime exposure to estrogen your body produces
• Low body mass index
• Alcohol consumption
• One or more relatives (mother, aunt or sister) with endometriosis
• Any medical condition that prevents the normal passage of menstrual flow out of the body
• Uterine abnormalities
Source: Mayo Clinic