Quality of Life and the Typical Patient Journey With UF


Dr Al-Hendy discusses the impact UF has on a patient’s life and their typical patient journey through the healthcare system.

Ayman Al-Hendy, MD, PhD, FRCSC, FACOG, CCRP: The heaviness of menstruation has major consequences in patient quality of life. In addition to [everything else], when the fibroid gets big, some patients complain of bulk symptoms—things like urinary symptoms and urinary frequency—because the fibroid puts pressure on the bladder. If it puts pressure behind the uterus or the rectum, they have constipation or painful bowel movements.

Fibroid has been associated with infertility. If you take 100 patients with fibroid and 100 equivalently matched patients without fibroid, it’s much easier for those without fibroids to get pregnant. I tell my patients, fibroid doesn’t equal infertility because some patients with fibroids can get pregnant. But in general, it decreases or limits your chance of becoming pregnant without help. If a patient with fibroid gets pregnant, there are some obstetrical issues: an increased risk of miscarriage, an increased risk of preterm labor, an increased risk of postpartum hemorrhage because after labor the uterus cannot contract very well. It’s a broad impact. A lot of literature has been inserted with a dramatic decrease in patients’ quality of life, compared with age-matched, ethnic-matched, everything-else-matched patients or women without fibroid.

With the description I’ve given about fibroids most of the time being so big and diagnosis so easy, you would think that a patient would seek help early because of the significant symptoms. Unfortunately, that’s not the case. There’s a lot of stigma in our society and globally. I’m an international doctor, so I practiced in other countries before I settled in the United States, and I still interact with and visit many other countries. Globally, there’s this stigma against fibroid. Patients don’t want to talk about it in their social life, even doctors in the medical community. Many doctors, other than ob-gyns, try to avoid asking about issues with menstruation. They’re reluctant because if the patient says, “I have issues,” then they’ll have to deal with it.

There’s something called normalization. From the beginning, the patient tends to normalize her symptoms. In last few years, she may have noticed a change in her menstrual cycle—it’s unusual, becoming heavier, longer—but she’s reluctant to talk to anybody, even in her social circle. When she eventually talks—to an older sister, her mother, or friends—the individual tends to trivialize and normalize their symptoms, saying, “Now that you’re in your 30s or 40s, this is normal. It’s nothing unusual, so just put up with it. It’s part of being a woman.” Some studies suggest this is more common in certain communities—for example, this is more common in African American communities—but I’ve seen this across the board.

The result is that the patient would not seek medical help until much later, when the pain and bleeding become so severe and she has almost no energy left. Some studies suggest the average delay is about 3.2 years, and for some women it’s even longer. Once you go into the medical or health care system, sometimes people get misdiagnosed. Some practitioners—no particular group, but probably internists and family doctors—tend to treat any kind of heavy menstrual bleeding the same way: by giving birth control pills and oral contraceptives without digging and doing the appropriate work-up to diagnose. Once you have the diagnosis, and you do the right steps, it’s fairly easy. By doing imaging, like transvaginal ultrasound, it’s easy to diagnose fibroid.

Some doctors or other health care practitioners don’t do that and treat anyway. But if you don’t have the right diagnosis, because there are some other causes of heavy menstrual bleeding, then you might not get the results. Ultimately, there’s some delay from the patient side and from the health care provider. It’s common to go undiagnosed because the health care providers start empirical treatment without doing the proper work-up, which should include imaging of the pelvis using ultrasound. With some kinds of simple, nonspecific treatment, you might get some temporary short-term relief. Which can feed into that loop—“I got better”—and then you continue. But even when the treatment fails, you tend to continue hoping that you’ll regain that initial benefit. It clouds the journey and makes it more complicated.

There are some serious causes of heavy menstrual bleeding—for example, endometrial hyperplasia or endometrial cancer—so you need to do the proper work-up with endometrial sampling or an endometrial biopsy, taking a small piece of tissue from the endometrium. These are the guidelines from ACOG, the American College of Obstetricians and Gynecologists, for anybody who’s having irregular menstrual bleeding to rule out endometrial hyperplasia and endometrial cancer. If you don’t do this from the beginning, then you’re wasting time, and that can worsen the outcome. Because of increased awareness of those serious causes of abnormal uterine bleeding, nongynecologists have a higher tendency to refer to gynecology early on in the patient journey, which is a good change to do the proper work-up and proper techniques.

This transcript has been edited for clarity.

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