Elyse Fine's gynecologist told her she needed a hysterectomy to treat a uterine fibroid that was causing heavy bleeding. But Fine, a 44-year-old mother of two, did not agree.
Every minute of every day in this country a woman has her uterus removed in a hysterectomy. Most of the surgeries are done on women under age 50, and the vast majority are performed to treat fibroids, benign tumors that develop in the uterus. Fibroids occur in as many as 80 percent of women. While the growths can cause pain and heavy bleeding, most do not need treatment.
Fine said she told her doctor, "I'm pretty partial to my body parts and I'd like to keep them. I have two children. I'm not having any more, but I really didn't want any more surgery."
Some experts say alternative treatments are better suited to treating most uterine fibroids. They say as many as 75 percent of the 600,000 hysterectomies performed annually in the United States for various conditions may be unnecessary.
Carla Dionne, who founded the National Uterine Fibroids Foundation after undergoing the procedure herself, says women need to hear more about their options. "I don't think any woman should have to undergo a hysterectomy when there are other viable options for uterine fibroids. And I think it's ridiculous that the other options aren't being made available to women across the country," Dionne said.
One option is fibroid embolization — a nonsurgical procedure that destroys fibroids by cutting off their blood supply. The procedure is typically performed by a radiologist.
Caught in a Turf War
But Dionne says most women aren't going to hear about it from their gynecologist. "There's a huge war between gynecologists and interventional radiologists," she said. "It has scared the dickens out of women so they wouldn't undergo fibroid embolization. Oh, the horror stories women have been told by their gynecologists about the procedure. It's ridiculous."
Hysterectomies are a big moneymaker for doctors and hospitals.
A gynecologist loses several thousand dollars each time a fibroid patient gets treated with embolization instead of surgery. It has fueled an ongoing battle between specialists — and some say Cheryl King got caught in the middle.
King, a 44-year-old wife and mother, teacher, and guidance counselor in New Jersey suffered from heavy menstrual bleeding. By the autumn of 2001 it had gotten much worse.
According to her husband, Tom, her gynecologist said the excessive bleeding was caused by a very large fibroid tumor that needed to be removed. His recommendation, Tom King says, was to remove the tumor by performing a hysterectomy.
Cheryl had researched fibroid embolization as an alternative to hysterectomy and told her gynecologist she believed it was the right choice for her. But her doctor disagreed. He told her the procedure wouldn't work in her case, her husband says, and that she was going to end up having a hysterectomy later on anyway, even if she chose fibroid embolization for her current tumor.
Still, Cheryl wanted to learn more about the embolization procedure. She spoke with family members in Atlanta who knew of a local interventional radiologist who did fibroid embolizations. The Kings made an appointment to see him, and the radiologist felt fibroid embolization would be an appropriate treatment for Cheryl.
The teacher scheduled the procedure for a few months later to coincide with her spring break, but she never made it back to Atlanta.
She started bleeding heavily and went back to her gynecologist. He gave her medication to help control the bleeding. But one day she was too sick to go to work.
Tom King recalls that morning in painful detail.
"She said, 'I'm really in pain. I think I need to go to the hospital.' So I called 911," he said. As he gathered clothes to bring to the hospital, his son called out to him.
"When I got downstairs," he said, "she was passed out on the floor. And I knelt beside her. They worked on her a couple of hours. But there was nothing they could do." Cheryl King died of complications from hemorrhaging.
Dionne believes Cheryl King's case was an unnecessary tragedy. "The saddest part to me in all of that is Cheryl lived about a mile and a half from the closest interventional radiologist who could have and would have performed the procedure," she said.
Dr. Grant Price, who has been doing fibroid embolizations at New Jersey's Somerset Hospital — near the Kings' home — since the late 1990s, said embolization was already an established procedure at the time of Cheryl King's death.
"We had been doing them at that point for a number of years. Certainly, we weren't hiding. We were readily available. Anybody who typed in fibroids and Somerset County into Google could have come up with me," he said.
Dionne finds King's story tragic and says, "She should not have died."
Look for a Cooperative Setting
"One of the best settings to be treated for fibroids is at a center where there is cooperation between gynecologic surgeons and interventional radiologists," said Dr. Shaun Biggers, an assistant professor of obstetrics and gynecology at Cornell University Medical College.
Biggers works closely with Dr. Neil Khilnani, an interventional radiologist at Cornell — to create a new team approach to treating fibroids.
Lucky for Elyse Fine, a friend has referred her to Khilnani. "We've learned who is a good candidate and who is not a good candidate … And we find that 90 percent of patients with significant symptoms do improve after the embolization," said Khilnani.
Much has been learned since 1995, when the first fibroid embolization was performed. That bodes well for Fine — the location of her fibroid and the fact her chief complaint is heavy bleeding make embolization a good choice for her.
She was mildly sedated for the procedure. Tiny pellets were injected into a catheter inserted near the groin that is guided up to the uterine arteries. The pellets stop the flow of blood to the fibroid tumors, causing them to shrink and die. The pellets are made out of a plastic similar to contact lenses and stay in the artery permanently.
The outcome statistics for uterine fibroid embolization are impressive — more than 90 percent symptom relief, with complications in only 2 percent to 5 percent of cases. Radiologists now routinely avoid the arteries near the cervix and vagina — which seems to minimize the risk of sexual dysfunction.
Another advance has been the use of pain medication for the severe cramping that sometimes starts during the procedure. It can often last several days but can be well controlled with medication.
Fine had the procedure on a Thursday and was back to work on Monday. Two weeks after her surgery she told 20/20 she was feeling fine. "Other than a little bit of pain the first weekend, I was back to work on Monday. Back running on Thursday," she said.
Dionne says Fine's experience is encouraging, but hopes the medical community will move quickly to make her experience the rule, rather than the exception.
"While that's one example at Cornell, I would love to see more examples of that happening. I can't help but think it's a win-win situation for everybody."
For more information on uterine fibroid embolization visit the National Uterine Fibroids Foundation Web site at http://www.nuff.org or call the group toll free at 1-800-874-7247.