By: Jean Johnson for Fibroids1
“At first my fibroids were nothing more than a menace,” Monique R. Brown writes in her introduction to “It’s A Sistah Thing: A Guide to Understanding and Dealing with Fibroids for Black Women.”
“I’d be hanging out with my friends and start to experience a leaky faucet sensation. Upon checking things out, I’d find that I was in the red, literally.” Brown explains that things went downhill from there.
| Monique R. Brown’s “It’s A Sistah Thing: A Guide to Understanding and Dealing with Fibroids for Black Women (2002) is a lively account that combines both her personal experiences with trends, research and statistics related to uterine fibroids in the black population. In her book Brown addresses: |
Establishing clear communication with physicians
Choosing the right treatment and approach
Evaluating non-traditional alternatives
Understanding how fibroids affect fertility
She had a “menstrual cycle that never seemed to end,” and at one exceptionally bad juncture, she did not go out unless shielded by “three sanitary napkins, one tampon, and a pair of Depends (adult diapers).” Even then, Brown remembers that the excessive protection only lasted 45 minutes.
The promising news is that uterine leiomyomas or fibroids have received increasing attention from the healthcare community. Women suffering from excessive bleeding caused by fibroids are no longer put on birth control pills or automatically directed to the operating room for a hysterectomy.
Risk of Fibroids in African American Women
That said, as recently as 2000, the National Institute for Environmental Health Science (NIEH), a division of the National Institutes of Health, stated that: “Based on hysterectomy statistics, African-American women appear to be a three- to nine-fold higher risk than white women, although it is not known if this disparity reflects a true difference in incidence or prevalence of uterine fibroids or, instead, is due to differences in diagnosis and treatment.”
In other words, in the past there has been concern within the black community that African American women with fibroids receive the lion’s share of the hysterectomies. Instead of having any taint of racism, however, the NIEH concluded that “real differences in uterine fibroid risk between blacks and whites” exist.
As one study the NIEH and the Office of Research on Minority Health initiated among 35 to 49 year old members of a large pre-paid health plan in Washington, D.C. showed, 73 percent of the black women had uterine fibroids compared to 48 percent of the white women. Consequently the researchers assumed that higher numbers of hysterectomies in African American women simply reflected higher incidences of fibroids in that population grouping.
Also, fibroids tend to occur at earlier ages and grow to larger sizes in black women than they do in non-black women. Clearly, just as some Jewish women have genetic predispositions to breast and ovarian cancers, significant numbers of African American women are at higher risk for uterine fibroids and their often disabling symptoms.
Uterine Fibroid Study
While fibroids are benign and not life endangering like female cancers of the breasts and ovaries, this uterine tumors can put a real damper on quality of life, as well as child bearing plans. To investigate this dynamic, the NIEH sponsored the Uterine Fibroid Study (UFS) between 1995 and 1999, with follow-ups into the new millennium.
Said UFS study manager, Ms. Glenn Heartwell, M.P.H., “During the years we were conducting the baseline Uterine Fibroid Study, I was coping with the pain and bleeding from fibroids that were growing inside my own body. I searched for causes and answers from physicians and researchers, but there were no answers. Though the therapy I chose helped, I still had questions. As the data from the study interview came in, I was encouraged that somewhere in our collective wisdom and experience we may find out what causes fibroids.”
Heartwell penned her “special appeal” above to encourage all 1,229 women who participated in the initial study to follow through with 30 minute telephone interviews designed to track women through menopause, at which time fibroids that are estrogen-dependent, begin to shrink in size – as well as lose their ability to cause distressing symptoms.
Other efforts on the national fibroid scene continue to be aimed at research focused on black women. The Agency for Healthcare Research and Quality (AHRQ) under the U.S. Department of Health and Human Services reported that 7 percent of white women and as high as 20 percent of black women have hysterectomies for fibroids by the time they reach age 45. As to why more black women don’t choose myomectomy that saves the uterus or a minimally-invasive procedure, the AHRQ concluded that there is simply not enough information.
More Research Needs to be Done
“Data are insufficient to allow conclusions about the most appropriate therapy for a given symptomatic patient,” reads one line in the AHRQ report. Another states: “The current state of the literature does not permit definitive conclusions about benefit or harm.”
Various federal legislators, most notably Congresswoman Stephanie Tubbs Jones (D-OH) have introduced legislation under the Uterine Fibroid Research Education Act to further research, but thus far, Congress has not rallied behind the effort.
Private researchers, however, are nonetheless making headway, as a study of a rare inheritable condition that involves both uterine fibroids and skin tumors published in a March 2002 issue of Science News shows. Researchers found that a particular enzyme, active in the breakdown of food to produce energy, was needed to prevent the fibroids from developing. This may give some hints about the biology that goes amiss in the common form of uterine fibroids, researchers suggested.
In the meantime, Monique Brown’s “It’s A Sistah Thing...” is a welcome read that lets African American women know that they are not alone, even as it helps educate this sector of the population about their bodies, their rights and their options.