When Brenda Camarillo of Bloomington was about 12 years old, she knew something was wrong.
“I started noticing my bleeding get very, very heavy when I was on my period,” she said. “Toward the end of that seventh-grade year, it was getting to the point where my dad had to come pick my up from school. I couldn’t concentrate. I was throwing up, getting nauseous, headaches — you name it.”
In eighth grade, it got worse.
“There would be times when I would literally cry myself to sleep because the pain was so bad,” she said.
Doctor after doctor told her this is how it is. Being a woman is painful. And inconvenient.
“It just kept getting worse,” she said.
In her mid-20s, Camarillo went on birth control to manage her symptoms that were consistent with endometriosis. But she wasn’t diagnosed until age 29.
On average, it takes women seven years to be diagnosed with endometriosis. For Camarillo, it took nearly two decades. Endometriosis is a chronic condition in which abnormal uterine tissue grows outside the uterus. That tissue grows on the reproductive organs and can spread to the bowel and other areas of the body. The cause is unknown and there is no cure. Camarillo also has adenomyosis, in which abnormal tissue grows in the uterine muscle.
Tammy Harpel is a professor of family science at Illinois State University. She's conducting survey research on how endometriosis affects women's quality of life. And for Harpel, the work is personal. She has adenomyosis.
“I grew up having issues with my cycle and it took 30 years for me to get a diagnosis,” Harpel said. “That led me to really get interested in looking at the research.”
Harpel found limited studies done in the United States; most of the research she came across was from Australia and the UK.
“We have different health care. We have different norms about talking about things like this,” Harpel said. “So I was thinking there has to be a difference in the impact. Not the physical impact, but the social, emotional and relational impact.
Endometriosis also can impact fertility. Camarillo gave birth to her son at age 15. So, when she and her husband tried to get pregnant in her 20s, there was little cause for concern.
“We tried for a year. Nothing,” she said. “We tried for another year. Nothing. At this point, I was 25 or 26. And it was like, well, your blood work is normal, you look healthy, you’re a healthy age. There’s no reason why you should not be able to have children. And plus, you already have a child.”
Camarillo did eventually get pregnant. She had a miscarriage during that pregnancy’s second term.
“No one really knows what caused the loss,” she said. “I’m not saying it was endometriosis, but it causes so much havoc on your body and it attaches to you like cancer would attach to you.”
"Kind of like a Band-Aid"
Another complexity is the common use of birth control as a treatment option, forcing some women to choose between managing their disease and having a family.
“Oral contraceptives are kind of like a Band-Aid,” said gynecologist Helen Ejiogu, who practices at OSF HealthCare in Bloomington. She said contraceptives don't treat the underlying cause and merely mask symptoms of the disease. And in certain patients, taking oral contraceptives made them feel worse.
“Should every woman try birth control pills for symptom management? Not necessarily,” said Ejiogu. “If it’s not part of your life, your culture, against your religion — then no, I don’t think you should pursue that.”
Ejiogu learned Natural Procreative Technology as part of her medical training. The surgical technique peels off abnormal uterine tissue associated with endometriosis. She is the only doctor in Illinois who performs the procedure.
“Kind of like darning a sock or sewing up patched holes in a sweater, you sew the edges together and turn them in so that it leaves a smooth surface.”
Ejiogu says NaPro Technology has about a 7% recurrence rate for endometriosis patients. About one-third of women who undergo conventional surgery for endometriosis have a recurrence within five years. Another option is a hysterectomy, in which the entire uterus is removed.
“If a patient has endometriosis and that goes unaddressed with the hysterectomy, those endometriosis spots in the pelvis are going to keep doing what they do,” said Ejiogu, including bleeding, inflammation and pain.
Camarillo said her diagnoses didn't necessarily provide clarity about treatment options. But it did give her a grassroots community of women to connect with. She's active online in Facebook groups and the Endo Reddit, which has more than 70,000 members.
Harpel said these sorts of communities help women advocate for themselves. Her survey aims to also understand how intersectionality factors in.
“It being a female disease is one roadblock,” she said. “But then to think about the roadblocks some communities really makes you think, okay, it can be worse.”
Other barriers like race, sexuality and socioeconomic status compound women's ability to seek diagnosis and treatment.
For example, Chestnut Health does not currently have a provider specializing in gynecology. A Chestnut spokesperson said they “understand the complexities of endometriosis and the challenges many patients face, including delayed diagnosis and access to care. From our experience, we see the barriers that Medicaid and uninsured patients encounter when trying to access specialized gynecological services locally, sometimes requiring referrals outside McLean County.”
Tammy Harpel’s survey on the Impact of Endometriosis is open to females age 18-50 years old, including trans and nonbinary people, who have endometriosis or think they do (but haven’t been diagnosed yet. The survey will be open for about two more weeks. Participants will be entered into drawings for $10 Amazon gift cards.
