KANSAS CITY, Mo. — From the outside, LeTysha Montgomery looks perfectly healthy.
But, for 20 years, she's been dealing with severe pain caused by a disorder called endometriosis.
"Having an invisible disease, you can't see endometriosis. So that's on the inside," Montgomery said. "So I'm told, you know, you look fine. But just because I look fine, doesn't mean that I am."
Since her diagnosis, Montgomery has been on a mission to educate other people about the disorder so they can hopefully be diagnosed and treated more quickly than she was.
Endometriosis occurs when the uterine lining grows outside of the uterus, causing inflammation, especially during the menstrual cycle.
It can be extremely difficult to diagnose and it took more than 14 years for Montgomery to find some answers.
"Just a lot of doctor's visits, a lot of tests [and] a lot of time," she said.
Dr. Kimberly Swan specializes in complex gynecological issues like endometriosis, treating patients at a Overland Park Regional Medical Center.
She says it can take an average of six to 10 years for a patient to get an official diagnosis.
One reason: women are often led to believe pain during their period is normal.
But pain that causes someone to miss work or school, or otherwise significantly impacts their life, is not normal Swan says.
Endometriosis is also hard to diagnose because it's difficult to detect in tests.
"These implants are really tiny and you can't pick them up on ultrasound," Swan said. "So sometimes when the ultrasounds look really normal, people are told, 'Well, you don't have endometriosis, because there's nothing on ultrasound.' Well, that's not necessarily true."
Despite the complexity of the disorder, endometriosis is fairly common.
The World Health Organization estimates it affects roughly 10% of people with uteruses between the ages of 15 and 49. That's more than 190 million people worldwide.
"I speak out about endometriosis because it's not something that's talked about a lot," Montgomery said.
She's trying to spread the word — she's written books and started a podcast called "Endometriosis: Journey to Butterfly."
Montgomery says she wants to share her journey and encourage others to advocate for themselves.
"It's your health. You only have one life, you need to do what's best for you," she said. "And if you need to go to a different doctor, that's what you need to do."
Swan also encouraged people to seek treatment if they have continued pain.
"If women are not getting improvement in symptoms, they need to continue to seek out health care providers that can hear what they need and escalate to the next steps," she said.
More information about endometriosis, its symptoms and its treatments is available on the Office on Women's Health website.
