What You Should Know About Uterine Fibroids

If uterine fibroids will affect more than 80 percent of women in the United States by the time they are 50 years old, then why has such little research been done about the gynecological disorder? What should you know about uterine fibroids and uterine fibroid treatment? Well, for one, thanks to the research done by scientists at the global pharmaceutical company, Allergan, those who suffer from uterine fibroids may finally have a treatment option that only requires that they take a pill rather than undergo invasive and expensive surgery to treat these benign tumors in and/or around the wall of the uterus, which can cause pain, abnormal bleeding, and fertility problems.

I spoke to Dr. Ayman Al-Hendy, a professor and gynecologist at Georgia Regents University and one of the researchers working on this new oral medication in clinical trials known as Venus I at Allergan. "This is an exciting time," Dr. Al-Hendy tells Bustle. "Allergan has been committed to developing new treatments for women's health. Most treatment options for women are invasive procedures involving major surgery... But with these new results from the Venus I clinical trials, we are going in the right direction toward getting approval for the first oral treatment [for uterine fibroids]."

The invasive surgeries of which Dr. Al-Hendy speaks are hysterectomies (complete removal of the uterus) and myomectomies (removal of the tumors). One-third of all hysterectomies are performed to treat uterine fibroids, which works out to over 200,000 hysterectomies per year. Hundreds of thousands of women, from the ages of 15 to 54, are hospitalized yearly due to uterine fibroids. It is expected that if new treatment methods are not developed and population growth continues, then there will be a 31 percent increase in uterine-fibroid related hysterectomies by 2050.

157 patients, all women between the ages of 18-50, participated in the Venus I clinical trials. Researchers were evaluating the ability of the compound ulipristal acetate which, as stated in a press release from Allergan, "[decreases] the formation of new fibroid cells and [promotes] fibroid cell death." Dr. Al-Hendy says, "This study was looking at the ability of this compound to control symptoms of uterine fibroids – especially abnormal vaginal bleeding. We have found that it is fairly effective at controlling bleeding. Specifically, in 60 percent of women, it stopped the bleeding. And that is the main pressing symptom from fibroids."

It is frighteningly common for gynecological health issues and women's health issues in general to be dismissed as "complex" and "outside the norm".

When a disorder is as common and as disruptive as uterine fibroids, it seems pretty reasonable to assume that the medical community would study effective treatment methods. But that's not the case. Harvard Health Publications states, "There are only a few randomized trials to guide treatment." It is frighteningly common for gynecological health issues and women's health issues in general to be dismissed as "complex" and "outside the norm" (it is a "special issue" because it is not a "men's issue") — but anything that happens to 80 percent of women seems like a pretty "normal" occurrence to me.

Other parts of the world, specifically Europe and Canada, already provide oral medication containing ulipristal acetate to women suffering from painful uterine fibroids, but the Venus I clinical trials are the first to research ulipristal acetate here in the States. The only uterine fibroids medication that is currently on the market in the U.S., explains Dr. Al-Hendy, is an injection that contains a compound called leuprolide acetate. This compound works by lessening production of the primary female sex hormone, estradiol. Says Dr. Al-Hendy, "Because leuprolide acetate reduces estradiol, the injection causes a temporary chemically-induced menopausal state," or pre-menopause. Due to this side effect, Dr. Al-Hendy says women with uterine fibroids are not advised to use the injection for more than three months. It can only provide temporary relief and is often used by patients in preparation for fibroids surgery.

Dr. Al-Hendy says that this side effect has not been present in the Venus I clinical trials of ulipristal acetate. "[These] pills taken by the mouth ... have the potential to offer the first long term treatment option for women suffering from uterine fibroids in the U.S. Menopause is not a side-effect of this option."

And the potential of this drug is a long-time coming. "For me, as a gynecologist who treats many patients for fibroids... we have been waiting for this for years. It is an exciting time for both patients and the practitioners who serve these women," Dr. Al-Hendy says.

Since this disease is not openly discussed nearly enough, let's talk more about uterine fibroids. But first, check out Bustle's new podcast, Honestly Though, which tackles all the questions you're afraid to ask.

1. What Do Uterine Fibroids Feel Like?

While scientists have not been able to pinpoint exactly why uterine fibroids begin to form in so many people with uteri, we do know what happens in the body; muscle cells and other tissue begin to grow into non-cancerous tumors, or fibroids, in or around the uterus. Some women may develop uterine fibroids and never feel any symptoms, but for others, the pain disrupts their daily lives. Symptoms range from pelvic pain, to infertility, to frequent miscarriages, and most commonly, to very abnormal and heavy vaginal bleeding. "Women with uterine fibroids will often say they have two periods per month," says Dr. Al-Hendy. "Or their period never really stops because they continue to spot or bleed until their next period actually begins." Imagine the typical pain and discomfort you experience while menstruating, but it never ends and is 10x heavier.

2. Why Does It Take Women So Long To Get Diagnosed?

Dr. Al-Hendy told me that, on average, it takes women four years to get diagnosed after first experiencing symptoms of uterine fibroids. Studies further elaborate that it takes women an average of 3.6 years to make an appointment with a doctor when symptoms begin, and 42 percent of women had to see at least two doctors before getting properly diagnosed.

When I first learned about these statistics, I assumed it was another case of women's concerns being invalidated and dismissed by the medical community, as revealed by the frequency with which women suffering from heart problems and brain tumors are turned away. While this aspect of our culture certainly shapes women's perceptions of their bodies and health, Dr. Al-Hendy explained to me that women are not necessarily being misdiagnosed; women aren't going to the doctor in the first place because we have been conditioned to normalize and dismiss our pain — especially our menstrual pain. "Women are told this is normal, that these kinds of things are expected as they age. They should just accept it and live with it. But women have been cornered to accept these symptoms." However, because uterine fibroids are actually very easy to diagnose through ultrasounds and imaging, once women validate themselves enough to see a doctor, "it is a huge step in finally getting a diagnosis," says Dr. Al-Hendy.

3. How Do Uterine Fibroids Affect Women's Lives?

If you menstruate, take a second to think about how your everyday life is impacted during your time of the month. Are you in so much pain that you are tempted to call off work? Do you have trouble sleeping because you have to wake up frequently to change your pad, tampon, etc.? Do you get headaches that cause you to struggle to maintain focus? Now think about feeling that way all of the time because you bleed so often at an even heavier, less scheduled rate. Dr. Al-Hendy says, "This greatly affects women's lives. The bleeding is heavy and unexpected. Women often lose out on work days because they have to stay home." Not only are women in pain, but their economic stability is threatened.

Speaking of which, in the U.S. alone, women spend up to $34 billion yearly because of uterine fibroids. This number considers the cost of surgery and the wages lost to sick days and recovery from surgery. Moreover, many studies have shown that black women develop uterine fibroids at a much higher rate than white women; 60 percent of black women develop it by age 35, compared to 40 percent of white women. The numbers only get higher as women age. Dr. Al-Hendy has studied these differences for 20 years, and while there is still no definitive answer for why this happens to black women more frequently, it may have something to do with Vitamin D deficiency.

Additionally, when a myomectomy will not suffice, some women are given no other treatment option besides a hysterectomy. And what if that woman desires to one day become pregnant? A hysterectomy is devastating, especially if another treatment option exists but isn't being researched.

But hopefully, Venus I will change all of that. Dr. Al-Hendy is confident: "The quality of life for these women showed great improvement after three months of treatment" with ulipristal acetate. Let's hope things keep moving in this exciting direction and we see it on pharmacy shelves soon.

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