December 23, 2025
She was used to pain.
Not the dull, fleeting cramps that come and go, but white-hot full-body convulsions that sent her insides writhing for an ounce of relief. Her fingernails dug deep into her palm – crescent moons forming, breath hitching, vision dimming, body trembling. Pain so heavy it strangled her screams.
Postured in a fixed fetal curl, she lay on the grimy school bathroom tiles, praying for death.
Her vision darkened: relief at last.
Doctors dismissed her agony as teenage hormonal hysteria. Tylenol. Anxiety meds. “Have you tried meditation?” After all, they said, “Periods are painful.”
But this was something else entirely.
***
By the time it was caught, the disease had done irreparable damage.
Following Tracy Prentice’s second bowel obstruction in two years, surgeons finally opened her abdomen looking for answers. What they found was a dense, fibrous web of scar tissue intertwined with her small bowel… so aggressive, they were sure it was cancer. But when pathology returned, her doctors were left baffled.
What could cause such extensive adhesions in a healthy 26-year-old woman?
Her “obscure” case was even presented at a medical conference. A room full of accomplished physicians stared at the scans and heard the case, yet no one recognized the most common and probable cause.
“It was a really tough recovery, both physically and emotionally,” said Prentice. “Not knowing the answers and living in fear of having another one terrified me.”
With the female-dominated condition receiving less than one hour of surface-level study in medical school, it comes as no surprise that doctors wouldn’t recognize it.
***
In 2021, after years of failed fertility treatments, Tracy finally had a clue after her reproductive endocrinologist felt something unusual during her pelvic exam and referred her to a specialist.
This specialist informed her that, despite suspicions, the only way to get a confirmed diagnosis was through laparoscopic excision surgery performed by an out-of-network surgeon, meaning insurance wouldn’t cover it.
The cost? $30,000.
“I went ahead with it because, at that point, I was desperate for answers,” said Prentice.
When she awoke, the surgeon had no doubts. The lesions were everywhere; they had spread through her ovaries, colon, uterus and kidneys.
What had been dismissed her entire life as “bad cramps” and a “low pain tolerance” turned out to be endometriosis — one of the most painful conditions known to medicine.
Her voice catches when she recalls the irony, “I was literally lying on a table open, years earlier, with experienced surgeons, and no one recognized it.”
***
Endometriosis is a chronic, inflammatory disease in which endometrial tissue grows outside the uterus and attaches to nearby organs. Each month, the misplaced issue thickens, bleeds and scars, causing fertility issues and pain akin to labor contractions.
The condition affects one in ten women, nearly 185 million people worldwide. It’s as common as diabetes, yet receives less than 0.01% of NIH funding.
Medical neglect is often compounded with implicit bias.
In 2013, one of the only well-funded studies on endometriosis famously diverted the money to research how attractive women with endometriosis appeared to men. Another used their NIH funding to study the impact on men dating women with the condition.
Spoiler: this life-altering, painful disease does, in fact, affect their partner’s emotional state.
“Endometriosis behaves similarly to an autoimmune or cancer-related condition,” said Dr. Ogden Beacon, Endometriosis Specialist, OBGYN at Novant Health. “It’s correlated with abnormal cell growth, nerve invasion and immune dysfunction.”
Current treatments focus on suppressing estrogen — the hormone known to accelerate lesion growth — but the side effects can be brutal: bone loss, cardiovascular health issues, depression and early menopause, to name a few.
New therapies, such as JAK inhibitors and GLP-1 medications, which are used for autoimmune and metabolic disorders, have shown early promise in the treatment of endometriosis. Still, breakthroughs remain out of reach until funding shifts.
For a disease that hijacks nearly every system of the body and spreads like cancer cells, it has been met with stunning indifference and lack of urgency.
***
Tracy’s mother, Diane Prentice, an elementary school teacher and health advocate, said she’s watched this cycle play out across generations. “When I was in college, doctors told me I ‘probably had endometriosis,’” Diane said. “Then they added, ‘But you got pregnant easily, so I guess you don’t.’
That was the diagnostic criteria of the 1980s; you were fine as long as you could reproduce.
It took Tracy six years to get an answer, but that is faster than average. Most wait seven to ten, and many others never receive one.
“I’ve met women who have mortgaged their homes trying to afford specialists,” Diane said. “Tracy was lucky. She had resources, and she’s used them to help others.”
***
Thanks to IVF, Tracy was able to conceive and birth her first child a year after her diagnosis. She donated her remaining breast milk to mothers who were unable to produce their own.
Now a personal trainer and nutritionist in Los Angeles, she dedicates her career to empowering women through health and education. She continues to share her journey on social media to raise awareness about endometriosis, encouraging people to advocate for themselves and for one another.
“My greatest wish,” she wrote, “is that everyone dealing with the darkness of unexplained medical issues gets some semblance of answers and hope like I did.”
Still, the unnecessary removal of a large section of her colon means that she will live the rest of her life on a restricted diet — a daily reminder of the system that failed her.
***
Endometriosis is often called the “invisible disease,” but the women who live with it are far from invisible. Their collective stories expose a society that has long mistaken endurance for exaggeration and silence for strength.
When asked what she hoped others would take from her story, Tracy said after a long pause: “We shouldn’t have to scream just to be heard.”