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Black Women and Fibroids: My Experience

Hello Beautiful People! It has been way too long! Tervetuloa! (Welcome!)

"Your body holds deep wisdom; trust in it, learn from it, nourish it, watch your life transform, and be healthy."-Bella Bleue

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I was lying on my black and white-sheeted queen size bed when I realized that my fibroids had returned. It has been a number of years since I experienced the symptoms but they were clear as day to me; a heavy menstrual cycle that lasts longer than 5 days, passing of clots through my urine, sharp, throbbing pain in my lower back that would not subside, fatigue, in addition to frequent trips to the bathroom and a bloated stomach that visually mimicked a pregnancy.

It would take close to a year to be approved for a fibroid myomectomy to remove 7 fibroids. Prior to the approval for surgery, I underwent a number of tests; vaginal ultrasounds, medication and a gynecologist who was insistent on having me utilize an IUD as oppose to fibroid removal (I HATE going to the gynecologist; as black women, our history with gynecology has never been a good one; however that will be the topic for a later post). On June 24, 2020, I underwent the fibroid myomectomy.

Fibroids are noncancerous growths in the uterus that can develop during a woman's childbearing years. The cause of fibroids isn't well understood. Risk factors include a family history of fibroids, obesity, or early onset of puberty. Symptoms include heavy menstrual bleeding, prolonged periods, and pelvic pain. In some cases, there are no symptoms. Treatments include medications and removal of the fibroid. Because my fibroids varied in size, I had a Laparoscopic myomectomy which allowed the surgeon to remove my fibroids through several small incisions; It’s less invasive and recovery is faster than with abdominal myomectomy.

Prior to the surgery, I had reached my mental and emotional threshold; I developed an iron deficiency and bled through more underwear (and sometimes clothing) than I could count. This surgery resulted in the removal of 7 fibroids (4 the size of golf balls and three the size of oranges) finally providing a level of relief for me; moving through this space with a bag of extra underwear and a pack of heavy flow pads felt like a secret that I felt ashamed to share with others. Though most fibroids are benign, the symptoms felt like hell for me and in Black America, where an estimated 80% of black women with wombs who will develop fibroids, between 20% and 50% of those women will experience symptoms, there is no time to keep this a secret; this is a health crisis for us.

Because fibroids are (for most women) not a life-threatening condition, it does not have the urgency that many other conditions do. For some women, fibroids are just something you put up with. The heart of the issue is that black women develop fibroids at much earlier ages than white women; our tumors are larger and more intrusive. We are more likely to have our fibroids surgically removed with higher rates of hospitalizations. Doctors point out that at the onset of menopause, fibroids will typically shrink; while that is all good, those of us who are nowhere near menopause should not have to suffer the debilitating effects of fibroids.

Fibroids are the cause of only 1% to 2.4% of infertility cases. These numbers matter, especially for the women, affected; and those who are primarily affected (reasons still unclear in the medical field) are disproportionally black women who receive a diagnosis of fibroids roughly three times as frequently as white women. Some estimates show that a quarter of black women between the ages of 18-30 have fibroids compared to 7% of white women and by the age of 35, that number increases to 60%. For a majority of black women, fibroids are the primary reason that hysterectomies are performed. For many underserved black women in poor communities, there is a lack of knowledge about the development of fibroids, or how to treat them, leaving individuals at an impasse, especially for those of us without access to health care or without the ability to seek advice from health professionals. This leaves us with limited options that keep us from accessing care.

One of the most referred studies concerning the fibrosis condition was conducted by the Fibroid Relief program of the Charlottesville, Virginia nonprofit Focused Ultrasound Foundation. This particular study surveyed 968 eligible fibroids positive women, 28 percent of whom were black women. These women had an outsized and disproportionate incidence of fibroids although they were no different from the other women in the survey when educational level, overall health, employment status, and the number of children were considered. However, the black women had significantly less income, were overwhelmingly single, and lived in less inviting geographic conditions.

These factors of differentiation were found to be significant in determining whether fibroids developed in a woman. This study, along with other studies along the same lines, showcased that social conditions were a part of why black women developed fibroids at an outsized rate. Basically, the stress that came from the lower quality of life that black women experienced created conditions in which fibroids were more likely to occur.

Black women were also much more likely than other races of women to experience the symptoms of fibroids for longer periods of time before seeking medical help. They were more likely than other races of women to try to control the symptoms using over-the-counter drugs. As a result, most of the black women experienced a more serious load of symptoms when reporting their condition to a doctor for the first time.

The study also found that black women have a genetic predisposition to develop fibroids more often than white women. However, this genetic predisposition is exacerbated because of a severe lack of vitamin D in the environment of most black women. Vitamin D is essential in combating the development of uterine fibroids in all women. In short, various conditions of biology and socioeconomics combine to create a much greater risk to the African-American childbearing female population of developing problems with fibroids.

It is not fully known what causes fibroids or why is it so prevalent among black women. Other research suggests that stress may be associated with increase fibroid risk. There are a number of researchers that theorize a lifeline exposure to racism, combined with limited access to medical care or low-quality care may explain the discrepancy which might help explain this disparity in fibroid diagnosis.

My experience with fibroids was an eye-opener for me; not only did it challenge me physically and mentally, but it also drew attention to the need of addressing health care and its impact on black women. I had the surgery however as per my Gyn, it does not guarantee that I will never have fibroids again; thus leaving me to do my best to practice self-care (avoiding stress, eating healthy, and of course exercise). These measures may or may not have an influence on whether I will have a resurgence of fibroids, but doing nothing is not an option for me.

As black women, we must be aware of our bodies, pay attention to what it is trying to convey to us so that we are in the position to make informed decisions. We have to educate ourselves; the time of just deferring to our doctors is over; we are in charge of our health. We need to look at our medical practitioners as individuals who have specific knowledge and technical abilities that we do not have and include them as partners in the analysis, diagnosis, and treatment process. We need them but we are the ones in charge.

For Nicky...your experience was also an influence for today's blog #shero

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Jess Edmond
Jess Edmond
Jul 12, 2020

Awesome article, sis!

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