Addressing Disparities in Care in Women’s Reproductive Health - Episode 1
Ayman Al-Hendy, MD, PhD, FRCSC, FACOG, CCRP, provides a comprehensive background on uterine fibroids, explaining everything from clinical burden to symptoms.
Ayman Al-Hendy, MD, PhD, FRCSC, FACOG, CCRP: Uterine fibroids are benign tumors on the wall of the uterus. The wall of the uterus, called myometrium, is a muscle. Its primary function, as far as we know, is to contract and push the baby out at the end of pregnancy to accomplish the delivery. It consists of muscle cells called myometrium cells. When you have a tumor from these muscle cells, it’s called myoma because it comes from the myometrium. These are uterine fibroids. The medical name is leiomyoma, which is muscle tumor of the uterus; leio is the uterus in Latin. In the medical field it’s commonly called myoma and even more commonly called uterine fibroids.
When I talk to my patients, I stress that it’s a benign tumor on the wall of the uterus. We have some information about these tumors, but unfortunately not a lot about the actual detailed molecular pathology and molecular pathogenesis. We know that they depend on the hormones that come from the ovaries, estrogen and progesterone. Estrogen and progesterone are the lifeline for these tumors to grow. That’s why we almost never see fibroids in young girls before they reach adolescence, because there’s no estrogen-progesterone in their system. For women who have fibroids, once they go through menopause—the average age is 52—and the ovaries stop producing estrogen and progesterone, these tumors will melt away. That’s what happens in the majority of cases. Fibroids gradually start to shrink because there’s not enough estrogen and progesterone in the system to support their growth.
As for the clinical burden of fibroids, it’s a very common disease and a very common tumor. Some autopsy studies show that about 77% of women have fibroid lesions. Luckily, not all of those are symptomatic. As it is, about 50% have physical presence of fibroids, with symptoms that need medical help. That’s already a lot. Imagine if every patient or everybody who had fibroids had symptoms. It’s much more common in women of color—for example, in this country it’s more common in African American and Hispanic women. For African American women, it’s about 4 times more common than European American women, and Hispanic women are about 2 times more likely than European American women.
Our group has been leaders in this area, asking why it’s more common in women of color. We just published an extensive article in Endocrine Reviews about our understanding of why it’s more common in women of color. I encourage those who are interested to look there. As you can imagine, it’s multifactorial: many factors contribute to the development of fibroids and why it’s more common in women of color.
Fibroids are a variable disease because you can have 1 lesion—1 fibroid tumor in the whole uterus—or you can have many. In my practice and in the literature, I’ve seen cases of up to 70 to 75 separate fibroid lesions in the same year. There’s a wide range of disease burden. The size of the tumor is variable, from a few millimeters to several kilograms or pounds of tumor. When we do a myomectomy and remove the uterus or remove the actual fibroid and leave the uterus, sometimes you can see this range of very small to large fibroids.
How does it affect the patient clinically? What do the patients usually complain about or seek help for? The most common symptom by far is heavy menstrual bleeding. The patient says, “My periods used to be 5 to 6 days, with 1 to 2 days heavy at the beginning and then tapering off. Now I’m hemorrhaging and bleeding heavily.” It’s quantified by the number of pads and tampons…. Also, the duration is different. Some patients say, “I’m bleeding all the time—I don’t stop,” or at least the period is getting much longer. Another feature is the heaviness of bleeding, which sometimes becomes irregular. The patient would have their period—and it’s already heavy, but then it stopped for a few days. The patient would tell me they’re have a second period after a week or 2 periods every month. Collectively it’s heavy menstrual bleeding, but it can take different patterns. The way I described is the most common. For up to 85% of patients with fibroids, that’s the primary symptom.
A close second is pelvic pain or pelvic discomfort. With this prolonged heavy period, the usual cramping that most women experience becomes excessive. Also, they complain that the cramping is becoming unbearable and very severe. It keeps them from going to work or school, and they’re unable to take care of their families. Pelvic cramping, or dysmenorrhea, can become much more significant or severe. In relation to heavy menstrual bleeding, if you’re losing a lot of blood and much iron and you’re not replacing it, the eventual result is iron deficiency anemia.
Many patients don’t connect the 2 things. They say, “I’m tired all the time. I’m sleeping a lot.” I had a patient who got extra sleep in the waiting room because of the severe anemia. When they called for them, they were sleeping. The nurse had to come and find them. Iron deficiency anemia is when hemoglobin is under 10 g/dL, which is very common in this population because of the excessive menstrual blood…. It also has major social consequences. I had students say they cannot do well in class during exams because they have mental fogginess or brain fog, because of the anemia. I had a patient who lost their job because they were considered lazy, but it’s really the severe anemia. When we measured the hemoglobin, it’s quite low—4, 5, 6, and so on. Normal hemoglobin is about 12 to 16 g/dL, and many patients have half or even less than half.
This transcript has been edited for clarity.