Imagine leaving your home self conscious that you may accidentally stain your clothes. More Importantly, imagine using the bathroom and feeling like you are losing half your body’s volume of blood each time. I do not have to imagine this as it was my reality. At first it happened sporadically every other menstrual cycle and then eventually I experienced heavy bleeding up to twice in one month. Last month was Fibroid Awareness month, something I only became aware of after suffering in silence for so long. Fibroids had completely taken over my life and had a significant impact on my quality of life as a result of the physical and emotional toll it had. At times I did not feel as though anyone in my family understood what was going on and neither did I.
Examining the Problem
Fibroids are noncancerous growths in the uterus that can develop during a woman’s childbearing years. The cause is not well understood and often impacts women of color at a more pronounced rate. Celebrating Fibroid Awareness month is not something that should be relegated to just one month out of the year. Like so many illnesses, particularly those impacting women and even more women of color, fibroids often get pushed out of the spotlight. This in turn impacts funding for research and treatment options. Many also suffer in silence like myself because fibroids are something that are often dismissed by healthcare professionals. The only thing worse than suffering in silence is feeling like you are not being heard once you decide to speak up for yourself. Fibroids undoubtedly can have an impact on the physical and mental well-being of those who are diagnosed with them.
Like so many health issues surrounding women and particularly women of color, lack of funding means lack of research. Issues pertaining to reproductive health are often pushed aside. So many women of child bearing age are faced with little options. They face options such as multiple surgeries with long recovery times or hormonal treatments to try to curtail fibroids but face the possibility of them returning again. Although my own journey did not include those options, I was faced with very little alternatives. I was dismissed by several doctors who told me my symptoms may get better as I get closer to menopause. I was encouraged to use a watch and wait approach. The other alternative was to try hormones or try other therapies that may work or could worsen symptoms. I believe too often we are not heard. In addition, women of color are often thought of as being able to tolerate pain. Case in point, I was offered a procedure called a hysteroscopy to explore the location and size of my fibroids. Once the procedure was described I asked whether a local anesthetic would be offered. I was told by my doctor at the time that there would not be any anesthesia. While researching other options I saw the same procedure offered at a medical center in a better part of the city. Their option included a local anesthetic. Ultimately, I decided to go with a less invasive approach called Uterine Fibroid Embolization or UFE. It was the right decision for me at that time. I found it difficult to understand why my doctor could not provide details about the procedure or recommend an interventional radiologists to perform it. The recovery time for UFE was less and although there were some painful first days, it ultimately was the best decision. My only regret was having the procedure done in a clinic versus a hospital setting. I feel that my pain was not managed appropriately and again disparities in treatment reared its ugly head. The stereotype is often that Black women can tolerate pain. I still recall the agonizing cries of a patient next to me in recovery while the medical team was whispering trying to decide if she really needed more pain medication or how much more she could tolerate. I was too weak to cry out but had intense pain nonetheless and had to wait until I reached home to take medication to help with the discomfort.
The other issue with this process and pain management was healthcare professionals and their lack of awareness in managing addiction. The rate at which opioids are prescribed for pain is an ongoing debate that only picked up speed once it hit suburban areas and impacted non-minority households. For this same procedure I insisted that I did not want opioids yet they were prescribed to me anyway. Once again I felt like I was not being heard.
Possibilities for the Future
Additional funding for fibroid research and proposed bills such as the Stephanie Tubbs Jones Uterine Fibroid Research and Education Act of 2021 can help to ensure that fibroid screening becomes a regular part of a women’s annual gynecological wellness checks. This will also allow for more accountability within the medical community to address patient concerns and look for long lasting and less invasive treatment options. Studies can be done to determine why the rate of occurrence happens more among some women of color. The bill also addresses the fact that some treatment options impact menstruation cycles and women trying to get pregnant. Passing this type of legislation can open the door to more positive healthy treatment outcomes. It will force the medical community to focus more on this issue and keep up to date with minimally invasive treatment options and keep more women from feeling like hysterectomies are their only treatment options. The favorable news is there are more organizations that function as a resource and support system for women. There are more in depth conversations happening that are propelling action and encouragement for women. Most importantly, moving forward women will not have to suffer in silence like I and so many others have done in the past.