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Women with uterine fibroids put off treatment

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Women with uterine fibroids wait more than three years on average before seeking treatment, even though symptoms often interfere with their everyday lives, a new survey finds.

These benign tumours affect up to 80% of women before the age of 50, and are the leading cause of hysterectomy – surgical removal of the uterus – in the United States.

Nearly 1000 women with fibroids responded to the Harris Interactive survey, and close to one-third of those with jobs said they missed work because of symptoms, including heavy or prolonged menstrual bleeding, cramping and fatigue.

Many of the women expressed concern about fibroid treatment. More than three-quarters said they would prefer non-invasive approaches, more than half wanted to preserve their uterus, and younger women were often focused on preserving their fertility.

"I was impressed by how strongly women felt about uterine preservation," said study author Dr. Elizabeth Stewart, a professor of obstetrics and gynaecology at the Mayo Clinic in Rochester, Minn. "For many women, even if they don't want fertility, preservation of their uterus is an important goal."

Hysterectomy not always required

Fortunately, fibroids won't necessarily require a hysterectomy, especially if women get medical care early, she said.

The 968 women surveyed were aged 29 to 59 and had reported fibroid symptoms. Fibroids often present no symptoms, but one-quarter of women with fibroids say their day-to-day life is affected by the growths.

Among the other findings: 24% of the working women said fibroid symptoms kept them from reaching their career potential, and 41% of women saw two or more health care providers before getting a diagnosis.

A sub-study found that black women are more likely than whites to have severe symptoms, and 32% of black women waited more than five years before seeking medical treatment compared to 17% of whites.

Quality of life

"Fibroids affect the quality of your life," said N Edward Dourron, a reproductive endocrinologist at Hoag Memorial Hospital Presbyterian in Newport Beach, California. The survey results mirror what he sees and hears in real life, he said.

It's no surprise that women often see more than one doctor, said Dr William Parker, a gynaecologist at the University of California Los Angeles Medical Centre, Santa Monica. "Patients get told they need a hysterectomy, and they see another doctor," he said. "And they see another doctor."

The national survey was funded by Fibroid Relief, a program of the Focused Ultrasound Foundation in Charlottesville, Virginia. The foundation, which promotes ultrasound treatment for fibroids, is funded by ultrasound device manufacturers such as InSightec and others, as well as private donations.

Stewart has been a clinical trial investigator for InSightec and a consultant for Abbott, which also contributes to the foundation, and to Gynaesonics, which makes a fibroid treatment device.

The exact cause of fibroids is unknown, Stewart said. Multiple hormonal and genetic factors are believed to play a role.

Individualised treatment

"I believe treatment needs to be individualized," Stewart said. Women need to assess where they are in their reproductive lifespan. "Most women get some shrinkage [of their fibroids] at menopause," she said.

If waiting isn't an option, treatment choices include medications such as birth control pills, surgery to remove just the fibroids or hysterectomy.

Ablation, a technique that destroys the lining of the uterus, and embolisation, which cuts off blood flow to the fibroid to make it shrink, are also options. Focused ultrasound, which uses ultrasound waves to destroy the fibroids, is yet another treatment.

According to Parker, "ultrasound is the least invasive approach, but it has the least amount of data." It was approved by the US Food and Drug Administration in 2004.

Information on the long-term safety of focused ultrasound, including pregnancy after the ultrasound treatment, is still being collected, Stewart said.

More information

The American College of Obstetricians and Gynaecologists has more on fibroids.

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