Why Women With Fibroids Are Putting Off Treatment
Alicia Armeli

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An estimated four out of five women will have uterine fibroids in their lifetime.1 Despite their ubiquity, these noncancerous tumors are very different from one woman to the next. Fibroids can grow in different sizes, different locations in the uterus, and may or may not cause symptoms. While some women aren’t even aware they have fibroids, others can experience unavoidable symptoms such as heavy periods, anemia, pelvic pain and pressure, incontinence, and even infertility.

Women with symptomatic fibroids have reported their condition has interfered with daily activities, relationships, and even work. And yet, on average, a woman with symptomatic fibroids will wait almost 4 years before seeking medical treatment.2

Why the wait?

“I never had period pain when I was younger,” Kellie, a Philanthropy Manager who resides in Atlanta, Ga., explains. “For a long time, I rationalized that maybe everybody gets cramps at some point. I guess this is just my turn. That was what I told myself as it got progressively worse.” This reaction to fibroid symptoms isn’t unusual. Like Kellie, many women attribute worsening periods to a normal progression in life.

To investigate why women seek treatment or—in some cases—wait, researchers at Northwestern University Feinberg School of Medicine and the University of Illinois at Chicago College of Medicine in Chicago, Ill., interviewed 60 women of ethnically diverse backgrounds who either have symptomatic fibroids or who had been recently treated for their condition.3

“Despite their [uterine fibroids] high prevalence and associated morbidity, there are little qualitative data characterizing what drives women’s treatment-seeking behavior for their fibroids,” writes Erica E. Marsh, MD, MSCI, Adjunct Associate Professor of Obstetrics and Gynecology, Division of Reproductive Endocrinology and Infertility at Northwestern University Feinberg School of Medicine and co-author of the study.3

Results published earlier this year in the Journal of Women’s Health reported many women delayed diagnosis even though they were having severe symptoms.3 Five major themes surfaced. Many women believed their symptoms were “normal.” Women also reported knowing little about normal menstruation and fibroids. Other reasons included not believing they were at risk for fibroids, avoiding the problem as a way to cope with their condition, and/or dissociating themselves from their fibroids.

“Many women with symptomatic fibroids live with this condition chronically without seeking care,” Dr. Marsh and her team reports. “It appears that for some, limited knowledge regarding fibroids and normal menstruation may lead to a distorted view of what is normal with regard to uterine bleeding, resulting in limited treatment seeking behavior. Others know their symptoms are abnormal but simply avoid the problem.”3

A 2011-2012 Harris Interactive online survey of more than 800 women with fibroids showed that over half were worried they would need a hysterectomy.2 This concern may also keep a woman from seeking treatment.

“My turning point was when I bled for one month straight,” recalls Carmen, a Registered Nurse in Atlanta, Ga., who wasn’t involved in the study. And yet, Carmen refused to get medical treatment for her fibroids. “The help I received from medical professionals was—operate. Hysterectomy. That was it.” Not wanting a hysterectomy, Carmen remembers waiting and educating herself by reading countless articles about treatment options. “My main objective was, I did not want to get rid of my uterus.”

Misinformation, whether its concerning normal periods or treatment options, is a problem among women with fibroids. “There is a need for patient-centered and community-based education to improve women’s knowledge of fibroids and symptoms and to promote treatment options,” Dr. Marsh reports.3

But when it comes to your period, what’s considered normal?

Normal can differ between women, but according to the US Department of Health and Human Services, the average menstrual cycle is 28 days long but can range anywhere between 21 to 35 days in adults and 21 to 45 days in young teens.4 Period length also varies with most periods lasting from 3 to 5 days, but anywhere from 2 to 7 days is considered normal.4
Although bleeding and cramping are normal, women who experience severe pain, heavy and/or irregular bleeding—for example, a period lasting longer than 7 days, using more than 1 pad or tampon every 1 to 2 hours; and bleeding between periods or after sex—should question what they’re experiencing, and above all, visit their doctor.4

By starting the conversation—with doctors and amongst themselves—women can get the answers and support they need and not feel so alone. “There are a lot of women out there who are struggling with this and they don’t talk about it. They just suffer in silence,” Carmen says—who later found uterine fibroid embolization, a less-invasive treatment option that worked for her and allowed her to keep her uterus. “I hope that by doing this, I let other women know–there is an alternative—that you can have your life back.”

ABOUT THE AUTHOR   Alicia Armeli is a Health Freelance Writer, Registered Dietitian Nutritionist, and Certified Holistic Life Coach. She has master’s degrees in English Education and Nutrition. Through her writing, she empowers readers to live optimally by building awareness surrounding issues that impact health and wellbeing. In addition to writing, she enjoys singing, traveling abroad and volunteering in her community.

 

REFERENCES

  1. Stewart, E., Laughlin-Tommaso, S. (2016). UpToDate—Patient education: Uterine fibroids (Beyond the Basics). Retrieved October 31, 2016, from http://www.uptodate.com/contents/uterine-fibroids-beyond-the-basics
  2. Stewart, E., Nicholson, W., Bradley, L., & Borah, B. (2013). The burden of uterine fibroids for African-American women: results of a national survey. Journal of Women’s Health, 22(10): 807-816. doi:  10.1089/jwh.2013.4334. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3787340/
  3. Ghant, M., Sengoba, K., Vogelzang, R., Lawson, A., & Marsh, E. (2016). An altered perception of normal: understanding causes for treatment delay in women with symptomatic uterine fibroids. Journal of Women’s Health, 25(8): 846-852. doi: 10.1089/jwh.2015.5531. https://www.ncbi.nlm.nih.gov/pubmed/27195902
  4. Office on Women’s Health, US Department of Health and Human Services. (2014). Menstruation and the menstrual cycle fact sheet. Retrieved November 1, 2016, from https://www.womenshealth.gov/publications/our-publications/fact-sheet/menstruation.html