DES MOINES, Iowa — Nearly 10% of women around the world suffer from endometriosis, according to the World Health Organization.
The Mayo Clinic describes endometriosis as a condition in which cells similar to the lining of the uterus grow outside the uterus.
In honor of Endometriosis Awareness Month, two Iowa women shared their endometriosis stories with Local 5.
The average person probably wouldn’t be able to tell that Erin Swisher suffers from a debilitating illness.
“People don’t always believe you; they mock it up to menstrual cramps or 'she’s just on her period, she’s being dramatic, it’s not a big deal.’ It is a big deal,” Swisher said.
She, like many women, lives with endometriosis, which affects mainly reproductive aged women.
The main symptoms are heavy periods, chronic pelvic pain, pain with sexual activity and infertility.
“It’s estimated that about 10% of women overall may have endometriosis,” said MercyOne OB/GYN Dr. Karen Kemp-Glock. “But when we look at infertility patients, up to 50% of those patients have endometriosis.”
For Swisher, her endometriosis diagnosis came with a lot of emotion.
“[The doctor] confirmed that I had it and I just remember feeling such relief, because you wouldn’t think that when you get a diagnosis, you’d be happy about it,” Swisher said. “And I just remember thinking finally someone believed me, someone found something concrete that was wrong.”
Katie Highsmith has also experienced the pervasiveness of endometriosis.
She’s had eight surgeries to address her condition, six of which she traveled to Texas for, due to the lack of endometriosis specialists in Iowa.
“I, for so long, had thought I was just weak, and I wasn’t handling my period well, and when I woke up and they told me I had endometriosis, I realized just how strong I was and how strong I’d been,” Highsmith said.
According to the National Library of Medicine, endometriosis research is severely underfunded, with just .038% of the 2022 Health Budget allocated to it.
“Endometriosis has a prevalence rate akin to diabetes and the funding is beyond dismal, compared to the diabetes funding,” Highsmith said.
She said major changes need to happen to improve endometriosis care, including increased research funding and more insurance coverage for treatment.
Highsmith also said Iowa would benefit from an excision specialist, which are surgeons who can perform excisions to remove endometriosis from the body. There aren’t currently any in Iowa.
The American College of Obstetricians and Gynecologists currently does not have a specific insurance billing code for excision surgery, meaning many endometriosis patients are forced to pay high out of pocket costs for treatment.