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Las Cruces resident Meagan Whittlesey has had a surgery every three years since 2007, when she was diagnosed with endometriosis, at the age of 22, after receiving several misdiagnoses.
Her surgeries have included removing her uterus, fallopian tubes, cervix, gall bladder and appendix. In three months, she will have her ovaries removed. She has also been on numerous medications and continues to try new medications – all in the hope that something will help treat the pain that often accompanies endometriosis.
But despite all of this, Whittlesey, now 34, said she has found little relief.
“Mostly doing yoga and eating right has helped,” Whittlesey said.
Treatments and surgeries that fail to ease pain, along with false diagnoses, is not uncommon among patients with endometriosis, a disorder in which tissue that normally lines the inside of the uterus — the endometrium — grows outside the uterus.
The disorder can sometimes be mistaken for pelvic inflammatory disease (PID) or ovarian cysts, irritable bowel syndrome (IBS) or other gastrointestinal diseases, according to Mayo Clinic.
Whittlesey, who knew her pain was linked to something bigger, said when she was finally diagnosed with endometriosis by a doctor in Phoenix, Arizona, she felt both relieved and sad.
While many people are unfamiliar with the disorder, endometriosis affects an estimated 1 in 10 women between the ages of 15 to 49, or about 176 million women worldwide, according to endometriosis.org.
Endometriosis most commonly involves a woman’s ovaries, fallopian tubes and the tissue lining the pelvis. But in other, more rare instances, endometrial tissue can spread beyond pelvic organs into other parts of the body.
Symptoms include painful and/or heavy periods, pain during intercourse, pain with bowel movements or urination, infertility and more. While there are certain risk factors for endometriosis, like starting your period at an early age and reproductive tract abnormalities, the exact cause of endometriosis is unknown, according to Mayo Clinic.
“One thing is for sure about endometriosis, and that is it’s a very individual disease; no two women are alike,” said Dolores “Doe” Gallegos, a Las Cruces resident and New Mexico Chapter president for endometriosis awareness.
Both Gallegos and Whittlesey hope to attend the 2020 EndoMarch, with Team Doe for Endo, in Las Vegas, Nevada, in March 2020, Endometriosis Awareness Month. The march takes place in several different locations around the world on Saturday, March 28, with some exceptions on the date depending on the Chapter.
The march is “the largest, internationally-coordinated endometriosis coalition in the world, representing over 100 organizations, groups, and medical societies,” according to endomarchnews.org.
There is currently no EndoMarch held in Las Cruces, or the state of New Mexico, but Gallegos said one of her goals is to start one.
Gallegos, who was diagnosed with endometriosis in 1990, formed Team Doe for Endo in 2014, when she attended the first national EndoMarch in Washington D.C.
That same year, Team Doe was able to get a proclamation signed by former Gov. Susana Martinez recognizing Endometriosis Awareness Month and Team Doe in the state of New Mexico, Gallegos said.
Gallegos has also been making an effort to connect with other “endo sisters” in the community through social media and other avenues.
“Last year, I was featured in the Las Cruces Sun-News and I gave out my email address to try and connect,” she said. “I’ve had people ask questions and have people who want to get together to vent but it’s been very difficult to get anybody together.”
The Team Doe for Endo Facebook page has been the most successful method of making connections, she said. People can visit this page to stay up to date on fundraising efforts and plans to attend the EndoMarch.
Gallegos said raising awareness about endometriosis is important because more research needs to be done on the disorder to find better treatments and, possibly, a cure.
“I don’t believe that butchering ourselves is the answer, and there’s girls as young as 13 who have endometriosis,” Gallegos said.
“Every [treatment] you try [might] work for a little while but endo is very cancer-like in that it can spread anywhere in the body and it continues to come back,” she said. “I’ve never heard of anybody being cured form endometriosis.”
There is also a lack of doctors who specialize in the disorder, and for those who live in Las Cruces, getting the correct diagnosis and treatment is even more difficult, often requiring a trip out of state.
According to the Endometriosis Foundation of America, it’s estimated that there are only 100 endometriosis specialists in advanced laparoscopic surgery. And while there are more than 40,000 OB-GYNs, “most of them do not do advanced laparoscopic surgery, which is required for a difficult endometriosis case.”
Whittlesey said it’s important for women who think their pain may due to endometriosis to be their own health advocate.
“[My advice to others is] not to give up and to keep going and always question – question what your doctors have told you,” she said. “You know your body best.”
Whittlesey also encourages everyone, whether they have endometriosis or not, to attend the EndoMarch.
“Whether it’s for a family member who can’t participate because of the pain, your brother or your sister, or family friends, that would really be a big help to show support because you can’t see [endometriosis] on the outside; it’s all on the inside, and sometimes people don’t understand.”
For information on EndoMarch 2020, visit endomarchnews.org. To stay up to date with Team Doe for Endo efforts, visit “Team Doe for Endo” on Facebook.
Alexia Severson may be contacted at email@example.com.