Uterine Fibroids: a Little Known Problem with Big Implications
When I agreed to go to a two day NIH conference on uterine fibroids, I knew what I was in for. I knew I would be silently pleading for a pocket-sized version of my college advisor to whisper in my ear and translate the intimidating scientific symbols, numbers and letters before me into English. I also knew that I needed to take this opportunity as fibroids and fibroids-related surgeries have been the number one subject that we receive questions about as health information interns. Without a doubt, there were times when I was indeed in over my head. But, to my delight, there were also presentations with which the .001% of us in the audience without medical degrees and PhD’s could follow along. In fact, though the conference concentrated on fibroids, I recognized that many of the concerns associated with fibroids effectively highlight concerns within the larger picture of women’s health. As such, I will use this blog to discuss concerns through the lens of fibroids, with the hope that it will bring attention to some of the broader issues that serve as barriers to women’s health at large. I will follow-up with a second blog of advocacy suggestions that, again, will concentrate on fibroids but could be applied to other women’s health issues as well.
Fibroids for Dummies:
Uterine fibroids are noncancerous tumors that most often develop in women between their mid-thirties and early fifties (often around the years leading up to menopause). For African American women, the onset of fibroids is often 5-6 years earlier, with diagnoses made in women as young as their late 20s. Though present in up to 75% of all women, fibroids do not produce symptoms or problems in the majority of women who have them. That said, for women whose fibroids are symptomatic (often due to a combination of location, large size, and having multiple fibroids), the discomfort experienced is often great enough to significantly decrease their quality of life. Specifically, fibroids can cause complications with bladder and bowel movements, back and pelvis pain, and heavy, painful, prolonged vaginal bleeding. Moreover, many women suffering from fibroids note that beyond the physical pain, dealing with fibroids is emotionally exhausting. They often find themselves feeling irritable or “on edge,” which negatively impacts their relationships with friends and family.
One of the most inspiring speakers at the conference was an incredibly engaging patient advocate. She began her story by explaining that throughout college and life as a young professional, she noticed she experienced abnormally heavy and painful bleeding. Sometimes the bleeding occurred during her actual menstrual cycle, but at other times, it appeared spontaneously. Her doctor at the time explained that it was “just a woman’s period issue.” Trusting his opinion, she continued on as before, believing that she was simply “one of those unlucky women” who had particularly difficult menstrual cycles. It wasn’t until she moved and saw a new, female gynecologist that she was asked, “have you ever been diagnosed with fibroids?”
It’s (still) a Man’s World:
The advocate’s point was not to portray male gynecologists as neglectful or evil, but to demonstrate the lack of awareness of fibroids even within the medical community. Though research and grants for women’s health research have dramatically improved in the last 20 years, “health standards” (prevention, diagnosis and treatment) are still primarily based on white, male patients. Put another way, while we have long recognized that women are built differently, it is taking longer for us to actively take those differences into account in the way we medically examine and treat women. Again, this does not mean that male physicians are incapable of being effective advocates for their female patient’s health. Rather, as aforementioned, they are used to a standard that has been slow to recognize female-specific health problems and to also recognize that diseases affecting both men and women often manifest themselves differently. And hey, no matter how conscientious they are, the fact is, that male doctors don’t own the same equipment, so it is not likely that they would innately and actively look for female-specific problems.
Mum’s the Word:
Even outside of the medical community, there is a huge lack of dialogue about fibroids among the general public. As someone who has actively participated in women’s health events and conferences for more than eight years, I do not recall a single time when uterine fibroids came up as a topic. Indeed, the patient advocate spoke about how dumbfounded she was to find out after years of suffering, that her mother and grandmother had also suffered from fibroids. With a little prying, she discovered that her grandmother had a complete hysterectomy and her mother’s approach was to “just deal with it.” Until then, neither had disclosed their personal battles with fibroids to anyone. Once the advocate went public with her story, she was overwhelmed by the additional number of friends who came forward and confided that they too had been suffering from fibroids, but privately.
No Plan without a Cause:
Sadly, even if advocacy efforts were so successful that every person in the world knew what uterine fibroids are, scientists have yet to discover what causes them or why they affect African American women at much higher rates than other women. Currently, doctors can point to risk factors like age and sex, and to possible risk factors like obesity, alcohol consumption, and diet. They can also show us that African American women experience the onset of fibroids at an earlier age and suffer from greater numbers and larger sized fibroids. But in the end, without concrete answers to why these things are true, it is hard to develop strategic prevention plans.
Research: Money and Trust
In order to understand what causes fibroids and why African American women face an increased risk of developing fibroids, clearly, we need more research. Before researchers can proceed however, there are other logistics that must be addressed. As is the case with most health issues, there is a need for greater funding. Even with sufficient funding however, researchers have expressed that there is also an incredible lack of female African American participants within clinical research trials, exactly the population for which greater research is most crucial. The issue is more complicated than simply enhancing recruiting techniques. There is a long history of unethical treatment of African American patients which, for many, has understandably caused a deep mistrust of participation in clinical trials. In the 1970s, news sources revealed that the “Tuskegee experiment,” ongoing at the time of the press releases, had enrolled Southern black men with syphilis into an experiment where they were unknowingly left untreated in order to observe the bodily affects of syphilis.* In another 1970s case, Cervical Cancer patient Henrietta Lacks had cells taken from one of her tumors without her consent. As it turns out, the cells were abnormal and have been used to make all kinds of drugs and products, but none of this was disclosed to her family until years after she died.**
Treatment: Overmedicalized and Uninsured
Finally, though there are a number of treatment options for fibroids, the only option that most women are offered is a complete hysterectomy. Currently, hysterectomies are the second most commonly performed surgery among women and fibroids are the number one reason that hysterectomies are performed. Unfortunately, the majority of these hysterectomies are unnecessary. Within the medical community, it is slowly becoming more accepted that hysterectomies should be a last resort for women suffering from fibroids. Hysterectomies are major, invasive surgeries that deny women of childbearing age the option to have children and leave all women with a long, painful recovery and the risk of unrelenting pelvic pain and painful sex. Unfortunately, though there are now many non-surgical, less invasive, effective treatment options for fibroids (I will provide links at the end), far too often patients are not presented with these alternatives nor will the majority of health insurance plans cover them. At the conference, there was a second patient-advocate who specifically spoke to the challenges she faced in trying to get her health insurance plan to cover a Uterine Fibroid Embolization (UFE). Only after six months of countless legal appeals, denials, and headaches, and tons of out-of-pocket spending did she find a way to have her surgery covered. Even then, she acknowledged that the majority of women could not afford to spend that kind of time, energy or money to fight for a procedure that should already be covered by insurance.
The Big Picture:
I am aware that this blog depicts a bleak outlook on the status of both fibroids and women’s health. I will write a follow-up blog that attempts to address many of the concerns I’ve just laid out, and provide advocacy strategies to begin tackling some of these issues. At the same time, it is impossible to deny that on all levels of women’s health, be it prevention, research, advocacy, treatment or clinical trial participation, an overwhelming number of obstacles exist and there is a lot of work to do. However, as they say with any attempt to change and make improvements, recognizing the obstacles is the first step. While fibroids may give us a whole staircase to climb, I promise that the accompanying blog will offer some ideas that may allow us a few victory dance steps on our way up.