Recent Baylor graduate Katie Mendez says she failed a class last spring because chronic pain in her lower half sent her to the hospital and cost her four days of instruction.
Mendez is one of 11 percent of American women between the ages of 15 and 44 struggling with endometriosis, a painful condition that occurs when tissue grows outside of a woman’s uterus and other areas of the body, according to the Office of Women’s Health website under the U.S. Department of Health and Human Services.
But Mendez and other women nationwide say they find it difficult to receive treatment for the condition, because doctors are hesitant to diagnose it, don’t fully understand it or find it difficult to detect, no matter how much pain a woman may be in. Mendez was one of several women who spoke to the Tribune-Herald this spring about the struggle to find endometriosis treatment in McLennan County.
“There’s a lot of frustration, and I went to counseling for depression and anxiety,” said Mendez, 22. “It was partially because of the symptoms and the way they mess with my hormones, but it was also because I wasn’t getting answers. You kind of feel like you’re going crazy because you have all these symptoms and you go to doctors, and you tell them what’s going on, but I had a doctor in the area who told me maybe I was just lactose intolerant.”
Mendez was diagnosed with endometriosis during her sophomore year of college, but she had shown symptoms since she was 11, she said. The condition is more common in older women, and though the tissue growth isn’t life-threatening, women often experience painful menstrual cramps, chronic pain in their lower back or pelvis, pain during sex, bleeding, infertility and digestive problems, the Office of Women’s Health website states. It can also increase the risk of other chronic illnesses.
But it took 10 years for Mendez to simply find a doctor willing to believe what her body was telling her before she was diagnosed, she said.
“My birth control stopped working,” Mendez said. “It was the thing that really took me to the doctor, because until then, I had been able to manage the symptoms with birth control. I went to multiple doctors because my cousin has it, and i know it’s kind of linked to if a family member has it. I went to four doctors, and finally the fourth one was willing to do a laparoscopy.”
Laparoscopy, an invasive surgery to detect endometriosis, is the only way for doctors to be sure the condition exists, the federal women’s health website states. Her doctor at the time then burned some of the tissue away to alleviate the pain, but the pain returned after a couple of months.
With no clear treatment options, she was left searching for a specialist to treat her symptoms, which led her to Houston. There, she discovered the condition was actually causing seizures within her body, making it difficult to move or travel sometimes, she said.
“It got to a point where I was going to multiple doctors, and they wouldn’t find anything,” Mendez said, holding her medical records. “They would dismiss the symptoms and think I was just making it up or blowing it out of proportion. Finally, having this to show I’m having more than just cramps that you think what endometriosis is all about was really nice.”
It’s not uncommon to see doctors minimize endometriosis symptoms, said Brittany Neece, a licensed professional counselor and founder of the Pelvic Pain Support Group in Austin, which is the closest endometriosis group for McLennan County patients.
Neece specializes in helping patients cope with the mental health side of chronic pelvic pain. As a woman diagnosed with vulvodynia, a separate pelvic condition that also causes chronic pain, Neece started her practice to help others through the similar journey she encountered after fighting a year and a half to find a diagnosis. She’s been operating the support group for three years now.
More than 90 percent of the women she sees for endometriosis issues have thought at some point that the pain was all in their heads, because they struggled to find a doctor who would listen, Neece said.
“No one talks about this,” Neece said. “No one wants to talk about their vagina and all the issues related to their female reproductive parts.”
But the struggle to get a diagnosis is about as real as the silence, she said.
In fact, in a panel with the Society of Women’s Health Research in April, experts admitted challenges doctors face in finding a diagnosis. Sometimes, the struggle to find a diagnosis is because of how period pain is viewed and normalized by women and their doctors, stated Stacey Missmer, the scientific director at the Boston Center for Endometriosis, during the panel. Other times, the struggle lies in the lack of research or education surrounding the condition, leaving women feeling isolated, she stated.
Endometriosis research received $10 million out of $32.3 billion budget for the National Institutes of Health in 2016, Missmer and others pointed out. And a recent survey by the National Pain Report, the West Virginia-based leading news outlet reporting on chronic pain, reported more than 90 percent of 2,400 women surveyed feel doctors and and the healthcare system discriminates against female patients.
“Most of the women I’ve talked with, the common theme seems to be a lot of testing they do comes out normal,” Neece said. “So doctors just say you’re anxious or you’re stressed because physically you’re fine. This is devastating for women in general because they know something is wrong and they don’t feel heard. There’s definitely a lack of understanding in our country and our culture, but I think pelvic pain and conditions like endometriosis are being talked about more and more … But it is common for women to feel like they’re being disregarded when they go to the doctor. They prescribe things that are really a Band-Aid approach to mask but not treat or address the underlying issue.”
The isolation Mendez felt at before she was diagnosed became so intense, she felt like she couldn’t grasp what her body was doing or how her mind was processing her condition, she said. But through therapy, family and finding other women with endometriosis to connect with on Facebook has made the struggle easier, she said. Mendez will schedule another endometriosis surgery for the summer before she heads off to law school and try to avoid missing classes this time.
But struggling together isn’t enough, Mendez said, recalling her time bouncing from four or five doctors in the county to get help. Doctors have to be willing to listen to what their patients are telling them about their bodies as much as women must advocate for themselves during medical appointments, she said. Neece echoed the sentiment, stating if a doctor isn’t willing to listen, they might not be the best person to seek out for treatment or a diagnosis.
“They’ve got to take their clients more seriously,” Mendez said. “There was one doctor I went to in the area. I told her I was concerned, and that I wanted to do the surgery to see if that’s what was going on because I was at the highest level of birth control I could tolerate without throwing everything up. Toward the end of the appointment, she had completely forgotten about the fact that I told her I couldn’t go higher on my dose of birth control and she just prescribed me a higher dose of birth control and sent me on my way. A little more understanding and credibility toward the patient would be nice.”