My patient, LW, is a 37-year-old African American woman who has suffered from heavy vaginal bleeding and anemia related to uterine fibroids her entire adult life. She has visited the emergency room countless times to receive blood transfusions because of the bleeding, which has soiled her clothes and ruined her bed sheets. LW was first diagnosed with uterine fibroids in her early thirties and was informed that she had several fibroid tumors in her uterus, the largest of which was the size of a grapefruit. Recently married with no children, she was told that there was no medical treatment except surgery so she elected to undergo a myomectomy (removal of the fibroid lesions then suturing the uterus back together). For a year or so, her condition improved, she even got pregnant and delivered her son by a Cesarean section.
Shortly after her son’s birth, the heavy periods began again and she came to me seeking treatment. Not only had the fibroids returned, but the prognosis was worse than before. Unfortunately, I had to tell her the only medical treatment that would provide her long-term relief without major side effects was another surgery. She could either have another myomectomy and risk the fibroids returning again or have a hysterectomy and remove her uterus. Devastated and heart-broken, she chose to undergo a hysterectomy and with that she lost out on the chance of having more children. I counseled her through the decision, but ultimately, she could not endure the daily struggle of living with fibroids and the physical and emotion duress they caused.
The burden of fibroids
Stories like LW’s are not uncommon because uterine fibroids are the most common benign tumors in women of childbearing age. They will impact up to 80% of women in the United States by the time they reach age 50 and are three to four times more likely to occur in African American women than white women.
Despite their prevalence and the $34 billion economic burden they impose on the healthcare system, the disease state is marginalized. As a physician, the treatment options I am able to offer my patients are both limited and invasive. However, there is an increasing amount of resources, research, and outreach being devoted to the treatment of uterine fibroids—which will ultimately improve the patient experience, address the unmet needs of patients suffering in silence, and, hopefully, shift the treatment option paradigm.
I have seen thousands of patients just like LW during the course of my career and have treated them for a range of mild to severe symptoms including long, heavy, and irregular menstrual cycles and passing clots, pelvic pressure, anemia, urinary bladder-related symptoms, infertility; obstetrical complications including recurrent miscarriages and preterm labor, and hemorrhage after delivery. I have witnessed how the physical symptoms of uterine fibroids can carry over and have a psychological impact on patients; they experience a lower quality of life and their day-to-day functioning is altered because they are constantly fatigued and some patients battle depression. A study found women with symptomatic uterine fibroids had feelings of psychological distress (95%), a sense of helplessness (50%), negative body image and sexuality, and lack of support.
Despite having symptoms that negatively affect their daily lives, women with uterine fibroids may wait years to achieve an accurate disease diagnosis or to seek treatment. A study found that women wait on average 3.6 years from onset of symptoms until seeking treatment, and 42% of women saw two or more healthcare providers before receiving an accurate diagnosis.1 Uterine fibroids are frequently found incidentally during a routine pelvic exam, where irregularities in the shape of the uterus may suggest the presence of fibroids. Typically, diagnosis is then confirmed by imaging of the pelvis using ultrasound scan, but other kinds of imaging can be used (i.e., CT scan or MRI scan). First-degree relatives of women with uterine fibroids have a 2.5 times increased risk of developing uterine fibroids.2 Women are most likely to be diagnosed with uterine fibroids during their 30’s and 40’s and their frequency decreases after menopause.
Traditional treatment options
When women finally seek treatment, their options are limited. Currently, the most common treatment option is a hysterectomy, which is an invasive surgery that removes the uterus and indeed cures symptoms and prevents reoccurrence. It is an option for women who have completed having children and don’t plan to have more because she becomes infertile once the uterus is removed.
Uterine fibroids contribute to more than 600,000 hysterectomies annually and constitute about one-third of all hysterectomies in the U.S. Patients who have not had children are often resistant to this option because they want their fertility to remain intact. As an alternative, patients opt for a myomectomy, which is another invasive procedure that removes fibroids from the uterus. This is a common option for women who have not completed having children and who wish to retain their fertility options. However, as seen in LW’s story, there are major disadvantages to this option as 50–60% of patients see fibroids return within 3-5 years of surgery, and more than one-third of these women will require additional surgical intervention. Scar tissues can develop around the uterus after a myomectomy and interfere with patients’ ability to get pregnant.
Finally, there is an injectable medication I am able to offer my patients, leuprolide acetate, which is commonly used before surgery to improve anemia. It down-regulates estradiol and progesterone, the primary female sex hormones. And as a result, it can cause a temporary chemically induced menopausal state including hot flashes, mood swings, loss of libido, nervousness, vaginal dryness, and impact on bones (estimated loss of 2.7% in bone mineral density after three months of treatment)3.
Relatively newer less invasive treatment options for women with uterine fibroids have emerged in last few years such as uterine artery embolization, focused ultrasound ablation, radiofrequency ablation as well as complementary medicine approaches. These evolving techniques, however, are being used in selected cases and their utilization is still relatively limited.
Hope on the horizon
Currently in the U.S., there are no FDA-approved non-invasive therapies for long-term treatment of fibroids with minimal side effects that do not inhibit ovulation. However, the treatment landscape is shifting and the United States is taking cues from Europe and Canada where, in 2012 and 2013, respectively, ulipristal acetate—a daily pill taken by mouth—was approved for the treatment of moderate to severe signs and symptoms of uterine fibroids in adult women of reproductive age, who are eligible for surgery. Allergan recently announced positive results of the first of two phase III clinical trials evaluating the efficacy and safety of ulipristal acetate in women with uterine fibroids. Moreover, other treatment options are in the pipeline and currently being evaluated for efficacy and safety for oral treatment of uterine fibroids including Elagolix, Vilaprisan, and Proellex.
The availability of non-surgical, safe, and effective long-term treatment options for women with symptomatic uterine fibroids would be a welcome addition to the field, providing alternative treatments for women who are not fit for surgery because of body habitus or because they are at risk due to prior pelvic and/or abdominal surgeries.
As a physician, my primary goal is to relieve the physical burdens my patients’ experience. And with a continued spotlight on the disease state and new therapies on the horizon, I will be able to offer my patients new options so they can better manage their symptoms. As the landscapes of treatment shifts, long-term solutions to uterine fibroids will not be limited to hysterectomies and stories like LW’s may end with an outcome that is more hopeful.
Pron G, Cohen M, Soucie J, Garvin G, Vanderburgh L, Bell S. The Ontario Uterine Fibroid Embolization Trial. Part 1. Baseline patient characteristics, fibroid burden, and impact on life. 79th ed. Fertility and sterility. United States; 2003. p. 112–9.
Schwartz SM, Marshall LM, Baird DD. Epidemiologic contributions to understanding the etiology of uterine leiomyomata. Environ Health Perspect 2000;108(Suppl 5):821–7.
Stovall TG, Muneyyirci-Delale O, Summitt RL, Jr., Scialli AR. GnRH agonist and iron versus placebo and iron in the anemic patient before surgery for leiomyomas: a randomized controlled trial. Leuprolide Acetate Study Group. Obstet.Gynecol. 1995; 86: 65-71.