New Survey Show Fibroid Sufferers Delay Seeking Treatment

Dr. Enrique Jacome

A newly published survey of nearly 1,000 US women with uterine fibroids shows that fear and lack of knowledge about treatment options may be preventing them from seeking treatment.

Uterine fibroids are common, non-cancerous tumors of the uterine muscle (myometrium) consisting of smooth muscle cells and connective tissue. A woman may have one fibroid or groups of several fibroids, and they can range in size from less than 1 inch to more than 8 inches across.

The study, conducted by leading fibroid experts from the Mayo Clinic, the Cleveland Clinic and the University of North Carolina, sheds new light on the impact, prevalence and treatment concerns related to uterine leiomyomas (fibroids).

The large-scale, racially diverse survey of symptomatic US women aged 29 to 59 - spanning childbearing age to menopause - is the first of its kind.  

Dr. Elizabeth A. Stewart, lead author of the study, said:

"Our study shows that women suffer too long before seeking treatment. This can narrow their range of effective options. Women are concerned about missing work and not reaching their career potential due to their symptoms, and they strongly desire noninvasive treatment options that preserve the uterus and fertility."

Leading cause of hysterectomy

Uterine fibroids are benign tumors in the uterus, which affect up to 80% of women by the age of 50. They are the leading cause of hysterectomy in the US - nearly half of the 600,000 hysterectomies performed each year in the US are for uterine fibroids and abnormal bleeding. 

Hysterectomies involve permanent removal of the uterus, which prevents fibroid recurrence but also results in loss of reproductive potential and many possible side effects, including early menopause and urination and defecation disorders.

Dr. Stewart, Professor of Obstetrics and Gynecology and Chair of the Division of Reproductive Endocrinology at the Mayo Clinic, added:

"Many people are unaware that the vast majority of women will experience uterine fibroids in their lifetime. This condition can cause significant morbidity for those who are symptomatic"

Assessing the results

The survey assessed diagnosis, information-seeking behaviors, attitudes about fertility, impact on work and treatment preferences among women living with uterine fibroids for an average of nearly 9 years. 

Key findings of the survey include:

• The mean amount of time women delayed seeking treatment was 3.6 years, with 32% of women waiting more than 5 years
• Most reported fears associated with their fibroids, including being afraid that they will grow (79%) and that they will need a hysterectomy (55%), as well as fears regarding relationships, sexual function, body image, loss of control and hopelessness
• Two-thirds (66%) of women were concerned about missed days from work due to their symptoms, and 24% of employed respondents felt that their symptoms prevented them from reaching their career potential
• The vast majority said they prefer a minimally invasive treatment option that preserves the uterus.

Justine Atkinson, Executive Director of Fibroid Relief, said:

"We were alarmed to find that this survey demonstrates a dangerous delay in diagnosis that may unnecessarily advance women's fibroid growth and rob them of less invasive treatment choices."

When presented with treatment descriptions, the majority of women surveyed (60%) rated focused ultrasound as their top treatment choice.

Focused ultrasound treatment, which has been available to US fibroid patients since 2004 and is the first noninvasive treatment option for this condition, uses high intensity sound waves to heat and destroy uterine fibroid cells while leaving surrounding tissue intact. It is an outpatient procedure that involves no incisions and enables many women to return to normal activity in 1 or 2 days.

Other treatment options include hormone therapy and myomectomy where the fibroids are surgically removed from the uterine wall.   

African-American women sub-study

A sub-study of 268 African-American women, published in the Journal of Women's Health this month, found that they have more severe symptoms, unique concerns and different information-seeking behavior for fibroids.

   Key findings of the sub-study include:

• African-American women were significantly more likely to have severe or very severe symptoms, including heavy or prolonged menses and anemia
• They more often reported that fibroids interfered with physical activities and relationships, and were more likely to miss days from work 
• One-third (32%) of black women waited more than 5 years before seeking treatment for their fibroids, compared with only 17% of white women; similarly, while 43% of white women say they sought treatment within 1 year or less, only 20% of African-American women did the same
• Concerns for future fertility and pregnancy were key concerns for black women; 71% said preserving the uterus was very important or important, versus 41% of white women.

Dr. Linda Bradley, Professor of Surgery at the Cleveland Clinic, said:

"This study has shown us that the burden of uterine fibroids is even more extensive for black women compared to white women than previously reported. In addition, we were alarmed to find that African-American women, despite their far more severe symptoms, report significant delays in seeking treatment compared to white women. The real-world consequences of these findings cannot be ignored."

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