Ask an Expert: Why Can It Take So Long to Diagnose Uterine Fibroids?

This article is part of Uterine Fibroids and Black Women, a destination in our Health Divide series.

Ask an expert: Dr. Shepherd
Xiaoyu Liu / Verywell

Uterine fibroids are growths in the muscular walls of the uterus that anyone of childbearing age can experience. But not everyone who experiences fibroids will develop symptoms or complications—at least not right away. As a result, diagnosis is sometimes delayed.

Fibroids are benign, which means they are not cancerous. However, they can grow, leading to several potential problems over time. A person with a uterus who didn’t have symptoms may gradually start developing them, including heavy bleeding during periods, severe cramps, and fertility issues.

When fibroid growth is gradual enough, people may normalize their symptoms, delaying diagnosis further.

Possible Fibroid Symptoms

In many people, uterine fibroids may not cause any problems. But others may experience:

  • Heavy or painful periods or bleeding between periods
  • Feeling “full” in the lower abdomen
  • Frequent urination
  • Pain during sex or pain in the pelvic area that doesn’t go away
  • Lower back pain
  • Reproductive problems, such as infertility, multiple miscarriages, or early labor
  • Anemia

Jessica Shepherd, MD, Chief Medical Officer of Verywell Health and a board-certified obstetrician-gynecologist, discusses fibroids and explains why they may go undiagnosed until long after they've become an issue.

Verywell Health: How do fibroids develop? 

Dr. Shepherd: Fibroids are the result of growth in the smooth muscle tissue of the uterus. The growth can be slow and take years to reach a point where the fibroids cause problems, but growth can also happen relatively quickly. 

Normally, the body has mechanisms to stop the overgrowth of cells into tumors. But the smooth muscle cells of the uterus may be more disposed to increased levels of hormones like estrogen and progesterone. The proliferation of these hormones can cause benign tumors to grow to the sizes that can lead to discomfort. Fibroids tend to shrink after menopause due to a drop in levels of these hormones.

Genetics plays a role in developing fibroids, but there isn’t a lot of research being done in this area.

Verywell Health: Despite the fact the majority of women will develop fibroids in their lifetime, a delayed diagnosis is not uncommon. Why is that? 

Dr. Shepherd: The slow growth of fibroids can play a role in why diagnosis is delayed. They can grow so slowly that any symptoms may start so gradually that a woman gets used to having bad periods, a distended stomach or having to pee more frequently. 

Many women think their extremely heavy periods and bad cramps are normal. In our culture, people don’t talk about their periods. It is just something you deal with. They may not know that the amount of flow they have, or the cramps they experience, are severe. 

Another reason that the diagnosis of fibroids may be delayed in women of color, specifically, is access to care. For example, a lot of women in Black and Brown communities end up having to go to healthcare centers that have limited resources, so their time spent with a doctor is shorter. There may be limited ability to send them for imaging. 

Over 80% of Black women develop fibroids by the time they are 50 years old, compared to 70% of white women.

Just getting to the doctor can be an issue. When I worked at an academic center in Chicago, some people had to take two buses and a train just to get to there. Women may skip their annual gynecology exam or go less frequently than they should because they can't take this kind of time off work. 

Verywell Health: Is it possible for a healthcare provider to miss fibroids at a routine checkup?

Dr. Shepherd: For some people, fibroids are diagnosed at a gynecology visit during a pelvic examination, when the doctor does a pelvic exam and presses on your abdomen (palpates) to feel the uterus. But the uterus can sometimes be hard to palpate because of its position in the pelvis or because of excess abdominal tissue. And if the patient is not having any problems—no heavy bleeding, cramps, or fertility problems—there isn’t a reason to do an ultrasound or other type of scan. 

If a gynecologist feels the uterus and finds that it is enlarged or irregularly shaped, they can confirm the presence of fibroids with an ultrasound scan of the abdomen. 

Verywell Health: What are the risks of a delayed fibroid diagnosis?

Dr. Shepherd: For someone who is not having any problems, a delay in diagnosis is not serious. But the most common symptom of fibroids is heavy bleeding. Some women become seriously anemic and must take iron supplements or even have a transfusion. 

For other women, the problems are bad cramps that have an impact on their lifestyle or keep them out of work a day or more a month. Frequent urination can be an issue to, because the uterus has become enlarged and presses on the bladder.

Interview conducted by Valerie DeBenedette, health writer.

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  1. Eltoukhi HM, Modi MN, Weston M, Armstrong AY, Stewart EA. The health disparities of uterine fibroid tumors for African American women: a public health issueAmerican Journal of Obstetrics and Gynecology. 2014;210(3):194-199. doi:10.1016/j.ajog.2013.08.008