Endometriosis is a common disease by most standards. Between 6 percent and 10 percent of women of child-bearing age have the condition, which results when cells from the lining of the uterus grow in other parts of the body.
Yet many women, like Emily Ingargiola, endure intense and prolonged pain and the possibility of infertility because they're misdiagnosed or inadequately treated, says Dr. Patrick Yeung. He intends to change that.
In August, Yeung, one of a handful of OB-GYNs nationwide who call themselves "excisionists," joined SLUCare and formed the Center for Endometriosis at St. Mary's Health Center. Before that, he'd been practicing at Duke University, where he founded a similar center.
The main mission of the clinic, Yeung said, is to take seriously the women who come to him seeking pain relief. In those who prove to have endometriosis, he'll use a CO2 laser to excise it. All of it. No matter how big or small or where it is.
Most doctors only recognize some lesions as endometriosis and won't touch it on certain organs.
The center at St. Mary's also will study the value of excising endometriosis with CO2 lasers compared to more traditional removal methods such as cauterization and ablation, Yeung said. And it will become home to an endometrial tissue bank for further study.
Ingargiola, 19, of High Ridge, became Yeung's first patient shortly after he set up shop in St. Louis.
By then, she and her mother, Nancy Ingargiola, a registered nurse who has worked in obstetrics and gynecology, had grown frustrated with a medical system that initially refused to believe Emily had a problem.
Ingargiola's troubles started shortly after she reached puberty at age 14. At first she had extreme pain but just during menstruation.
Then she started urinating and defecating blood. Her periods were so heavy that she'd use a tampon and maxi-pad simultaneously and bleed through both. The pain started lasting all month, often leaving her doubled over, unable to go to school.
At first, she said, her doctors told her pain was normal. That she was being whiny. Then they said she had irritable bowel syndrome, most likely from stress.
She spent an entire month during her junior year of high school in the hospital. "It's really traumatic to have something going on in your body and having a lot of pain and having doctors not believe you and say that you're crazy," Emily Ingargiola said. "Not being listened to was the hardest part for me."
Finally, in March 2010, doctors at the Mayo Clinic suggested that maybe she had endometriosis. An ultrasound in St. Louis indicated that was likely. When hormone suppressants didn't work, doctors performed laparoscopic surgery and found severe endometriosis on her bladder, bowels, ureter, ovaries and pelvic lining. They ablated it twice. Ablation vaporizes endometrial lesions by either freezing, heating, microwaving or sending electrical currents through them.
It didn't work. The pain and endometriosis returned within weeks.
By this time, Ingargiola was enrolled at Bellarmine University in Louisville, Ky. Out of desperation, she began getting Lupron injections, which suppressed the endometriosis and induced menopause. The side effects were almost as bad as the pain.
"I turned into a different person," Ingargiola said. "I was getting hot flashes, I was completely unable to remember things or focus on school, and I had horrible mood swings."
She had been on Lupron for three months when her mother attended a medical conference and heard about Yeung.
Emily Ingargiola had the laparoscopic CO2 laser excision surgery Aug. 23.
THE TEXTBOOK PATIENT
Ingargiola is the type of patient Yeung hopes to help.
Many OB-GYNs have accepted that recurrences of pain and endometriosis after ablation and cauterization are normal, particularly in teenagers, he said.
But excisionists like Yeung who train at the Center for Endometriosis Care in Atlanta don't accept that.
They're taught to recognize subtle forms of the disease, including the slightest of spots, which other OB-GYNs either miss or dismiss as something else. Then they use a CO2 laser to cut out every last bit of it.
Most OB-GYNs only cauterize or ablate tissue on the surface of organs.
"You might be getting just the tip of the iceberg," Yeung said. "We know endometriosis can invade, and you can't tell which lesions are invading. I and others believe that excision, which is cutting out the entire implant down to healthy tissue, is the only way to 100 percent treat it."
Thirty years ago when surgeons cut patients open, excising endometriosis with CO2 lasers was common. Then laparoscopy became preferred because it was less invasive. But it was also difficult to do with bulky CO2 laser equipment, so ablation and cauterization became the preferred methods.
A couple of doctors clung to the notion that excising was still the gold standard for treating the condition and began perfecting ways to do it laparoscopically. About 20 years ago, the Center for Endometriosis Care in Atlanta was founded to treat patients using that method. The center has treated more than 4,500 patients since then.
Dr. Ken R. Sinervo, medical director of the center, estimates that 20 percent of patients treated there experience a recurrence of endometriosis during the two years after surgery. That's compared with 80 percent who undergo traditional surgical treatments.
Excisionists are not without their naysayers.
DANGERS OF PROCEDURE
Dr. Randall R. Odem, a reproductive endocrinologist at Missouri Baptist Medical Center, concedes that cutting out a whole lesion is appropriate sometimes, but not all the time.
"If you do excision that leads to scarring post-operatively, that can be detrimental," he said. "You have to know what's appropriate. If you do too extensive of surgery and it leads to scarring, it can hamper fertility."
Sinervo counters that most doctors have no interest in becoming excisionists, because learning to identify all forms of endometriosis then excise it on organs while minimizing scarring is tricky and time-consuming to learn. It also takes longer to perform than ablation and cauterization but is reimbursed by insurance companies at the exact same rate as those methods.
"So why is a doctor going to take extra time to excise if they're going to be paid the same?" he said. "People who are sold on doing excision are into advanced laparoscopics."
Sinervo and Yeung plan to do a head-to-head study comparing excision to ablation.
Only time will tell if the laparoscopic excision surgery that Yeung performed on Emily Ingargiola is successful. She has already had another surgery to remove nerves that conduct pain signals from the uterus to the brain during menstruation.
On a recent morning after the surgeries, she and her mother were drinking coffee. Emily recalled that she'd once asked her boyfriend if he ever has days where he feels normal.
"Because I never did," she said. "He looked at me like I was crazy. But now I feel normal, and I haven't felt that way in five years."