Lani Nichols was just 26-years-old when she was diagnosed with stage four endometriosis — a disease with no cure.
"I thought it was normal," she said. "I just thought people experienced constant pain. Little did I know my organs were all fusing together."
Nichols, now 42, is in physical therapy for six hours each week to help rebuild her strength following excision surgery.
"I've had seven laparoscopies just to manage pain until they finally went in for the last laparoscopy and my surgeon said, I can't do anything else for you. She's like, 'I know what you looked like three years ago. You look like someone's poured cement inside of you,'" Nichols said.
About 10% of reproductive-age women have endometriosis, according to an article published in the New England Journal of Medicine.
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Endometriosis is a condition in which "cells that are somewhat similar to the lining of the uterus are found elsewhere in the body, causing pain, inflammation and organ dysfunction." It's a full-body disease and has been found in every organ.
"I think the best way of describing it is like a vise is wrapped around you, like a really tight belt that has just been tightened and tightened and there's no real relief," Nichols said.
The pain is different for everyone. Although uncommon, Nichols' endometriosis — called "deeply infiltrating endometriosis" — turned life-threatening.
In 2021, she got excision surgery to take out the disease from the root. The procedure is considered to be the gold standard when it comes to treatments for endometriosis, but her surgery came with complications, which has led to even more surgeries.
"My body was no longer fighting. My body was shutting down," Nichols said. "The nurses made me say goodbye to my husband. They made me call my kids and tell them goodbye."
Because more research is needed, little is known about the chronic condition, and specialists are hard to come by.
Heather Guidone, the program director at the Center for Endometriosis Care in Atlanta — who also has endometriosis herself — said there are only about 200 endometriosis specialists around the world.
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"It's also inaccessible to a lot of people," Guidone said. "Insurance doesn't like to cover quality care for endometriosis because it's sort of all lumped together in one basket and they say anybody can treat it. But not all surgeons are treating the disease the same way."
As she works to get her health back on track, Nichols said she's just grateful to be alive today.
"My doctor, who I credit with saving my life, he told me 'Your positivity is why you're here,'" Nichols said. "He's like, 'I don't think you would have been here had you let the gravity of your situation set in.'"
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