INDIANAPOLIS— March is Endometriosis Awareness Month. The chronic condition affects about 10% of women and often goes undiagnosed.
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“I got a little depressed thinking, ‘Am I going to be in pain for the rest of my life?’” Lael Hill said.
Hill said her symptoms began after having her second child.
“I had pain in my lower back and pelvic area, and my pain levels were like an eight out of 10,” she said. “I went to the doctor several times, and they said it’s just a normal period and I just have really bad menstrual cycles.”
But Hill said that explanation never felt right.
“You know your body, and you know you’re in pain,” she said. “If your pain is bad and it’s impacting your work and your relationships, then there’s an issue.”
For 16 years, Hill searched for answers. She saw multiple doctors within the same health care system and said she kept hearing the same response.
“I wish I would have advocated for myself a little more,” she said. “I thought I was advocating for myself by getting a second opinion.”
In December, Hill sought care from a doctor in a different network. That provider mentioned Endometriosis for the first time.
“That was the first time since I started having these symptoms in 16 years that I had heard that word,” she said.
"Endometriosis is when the tissue of the inside of the uterus, we call that the endometrium is now present somewhere else in the body, " explained Dr. Amy Moon, with the New Moon Center for Women’s Health.
The average time between a patient’s first symptoms and a formal diagnosis of endometriosis ranges from four to 11 years.
"In the very beginning stages when women start to get endometriosis it's practically invisible to the naked eye and so since it's not uncommon for some women to have pain with their periods a lot of times it's hard to differentiate if it's something abnormal or not," said Dr. Moon.
For Hill, finally getting a diagnosis brought relief.
“I felt so validated,” she said.
She recently had surgery and said she has been pain-free for the first time in months. Now, Hill is speaking out to help others.
“So they don’t feel alone, and so we can maybe get politicians and lawmakers to listen to us and advocate for more funding, so we can understand how we get it and what the cure could be,” she said.
Hill had been receiving care through IU Health. She said she sent a letter to the system’s patient relations team requesting a review of her case and additional provider training.
She said she has not received a response beyond an acknowledgment of her email.
