For many women, that time of the month can bring about a range of emotions. From cravings to mood swings, women all over have different experiences when getting their monthly visit from dear Aunt Flo. However, for women who suffer from uterine fibroids, especially Black women, it is an entirely different experience.
Although 80% of all women will develop uterine fibroids by the age of 50, Black women experience them at a more alarming and severe rate. When speaking with doctors about symptoms or various treatment methods, Black women are often dismissed or offered hysterectomies as the only option. And with the number of Black women who suffer from fibroids increasing, more and more are taking matters into their own hands by educating themselves, establishing advocacy organizations, finding support within their communities, and restructuring their lifestyles so that this debilitating dilemma can someday be a thing of the past.
Here, four Black women weigh in on fibroids and how they are using their personal experiences to improve the quality of life for others.
Tanika Gray Valbrun, founder of The White Dress Project https://thewhitedressproject.org/
What is The White Dress Project?
We are a nonprofit, patient advocacy organization, and believe that as scientists and government officials, there should be more of an investment in the research of this epidemic. I came up with the name after having my first surgery in 2013. I was going through a lot mentally while recovering, had never had surgery before, and my procedure invasive. So, I was having a tough time. Through all my ups and downs, I realized that I did not have anything white in my closet. And it reminded me of all that I sacrificed. Having to avoid something for so long in my life was a problem.
Then I thought about all the other areas of my life that I sacrificed due to fibroids. It bothered me that one was talking about it and that doctors would make statements saying, “If they (the fibroids) aren’t bothering you, don’t bother them.” However, when I mentioned it to friends, it was a common thing. It was then that I realized we should support one another. As women, we are experiencing debilitating symptoms and going through them alone. We are making excuses when calling in sick, when, we are laying on our bathroom floors, in a fetal position due to our fibroid symptoms. And I just felt that that should not be so. If it were a male issue, there would be more support and discussion, and I wanted to see that for women, especially Black women. So that was the birth of the White Dress Project.
I was familiar with fibroids because my mother had them. She lost two sets of twins because of them and later had to have a hysterectomy. Hearing my mom’s stories and knowing what she went through, in addition to other women who maybe did not have a history or whose mothers never talked about it, made me realize how it has been normalized. And I found that to be problematic.
What are some of how your organization supports women?
When I first started, I wanted support for myself and to create a community of women who no longer had to suffer in silence, to show them that they are not alone, and remove the shame surrounding reproductive health issues. In comparison to the research, it was vital that we talked about it. A large part of what we do is to get women to a place where they no longer feel silenced or feel as though they must shun themselves.
Before COVID, we held events where women would come dressed in their white to help women feel pretty and supported and loved. We knew that we were not necessarily comfortable in wearing our white, but we also knew that we were there to support one another. When you have fibroids, you do not feel comfortable wearing white, but we are pushing through that.
We also offer community education through our advisory council of doctors, with one of the signature programs “Dialogue with the Doctors.” The idea behind it is to have a conversation with a doctor and almost get a free second opinion. We are continually providing resources, education, and access to doctors and healthcare professionals because we know the many areas that fibroids affect us. During COVID, however, we pivoted and provided all our programming virtually.
What many people do not know is that we are singlehandedly the ones who created Fibroid Awareness Month. In 2014, I got legislation through the Georgia House of Representatives to declare July as Fibroid Awareness Month. After passing in Georgia, it was then passed in the US House. So, it really warms my heart to see how it is grown and hear so many people talking about it. All while knowing that we are the ones responsible for it.
LaToya Dwight, BBA, MSM, RHU, CHCC, REBC, Founder of The Fibroid Pandemic firstname.lastname@example.org
What led you to create your platform, The Fibroid Pandemic?
I have uterine fibroids and was offered a hysterectomy. At the time, I did not know what fibroids were, and was not given any resources other than being told that there is no proven data as to what caused them. That did not sit well with me and made me do my research. I began doing yoga, qigong, eating for my blood type, and just really taking my womb into my own hands. After deciding that I would have a minimally invasive procedure, I realized that a lot of women do not know where to turn because they are typically given the recommendation of having a hysterectomy. And while there is nothing wrong with having one, statistically, 60% of hysterectomies are not needed. So, the reason I started this platform was to be a resource or solution for women to have somewhere to turn and do their own research.
What can you tell me about the relationship between Black women and fibroids?
It is mainly due to Black women being more overweight than our white counterparts. Not only that, the environment that Black women are exposed to is also a major factor. Historically, within our culture, the foods that we eat used to be the scraps. So, generation after generation, a lot of those eating habits such as dairy, pork, fat, fried food, and sugar have continued and contributed to the development of fibroids. It may be more common to see white women in the gym, running outdoors, and being active, but it did not necessarily become common in Black communities until 10-20 years ago. Because of that reason, Black women tend to be more obese.
Also, due to our environments, Black women tend to carry more stress. Whether it is on our jobs, in our relationships, or our households. Many of our Black men are absent from the households, and Black women are left to raise the children on their own. So those components contribute to the development of fibroids in Black women more than our white counterparts.
We tend to suffer longer because we do not always have the support or know where to begin. A lot of times, we do not even know what is going on in our bodies. There are a lot of women who have very heavy menstrual and feel that it is normal when it is not.
With all those factors combined, that is why Black women suffer three times more likely than white women.
What are some different holistic methods that Black women can do to improve their symptoms or shrink their fibroids?
There are several ways that a woman can naturally shrink their fibroids, but it takes time, and consistency is key. One thing women can do is remove dairy from their diets. Also removing any external stressors. Stress plays a big role in fibroid development. But really incorporating organic produce and changing the way you prepare your foods.
Switching cosmetic products is key, as well. More so, the feminine hygiene products. I sell the Cherish brand, sanitary napkins. The more commercial-grade products that you see in the stores are made with so many chemicals that are, in fact, poisonous to our wombs and feeding a slow death to the uterus. What happens is, they go through a seven to the eight-stage bleaching process, and the companies do not tell you all the chemicals they are using. So, you have young girls who start using these products during teen and pre-teen years, and by the time they get to their early 20s, these products have fed poison into their uterus. And it is no wonder we have someone who at 25 years old is receiving a recommendation for a hysterectomy.
So, when taking all of this into consideration, these are ways to shrink or minimize fibroids. But again, the key is consistency.
Phyllis Frempong, RN, Fitness Coach, “The Fibroid Queen” https://www.instagram.com/fibroidqueen/
What would you say is the link between Black women and fibroids?
I would say that we are more at risk based on awareness, research, and empowerment. Starting with awareness, Black women are last when learning the information needed to maximize our options. In the medical system, it has been this way for a long time. It has been set up for us to be at a disadvantage; therefore, we are required to educate and empower ourselves to stay abreast of what is going on.
With doctors and nurses, there can be a lot of cultural incompetence. And for me, being a Black woman, I can talk from both a patient and nurse’s perspective that Black women are completely unaware when it comes to knowing their bodies or how to communicate what is going on. I have been in situations where I was immediately judged by the color of my skin and pigeonholed into a decision that a doctor thought was best for me. So, I encourage Black women to be aware of not only fibroids but what is going on in their bodies.
The second thing is having a recollection of what you can do and being aware of your decisions. With fibroids, we have gone from hysterectomies being the only option to having more and knowing how they can impact your quality of life.
When looking at fibroids, they are caused by a hormonal imbalance which is driven by different factors. From having a sedentary lifestyle, emotional disease, diet, and environment. All of that has an effect on the liver and hormones that are regulating in your body. So, removing the actual fibroid or the uterus itself does not get to the root of the cause. Empowering Black women to know that their bodies are stronger than they think and that if they can give it what it needs, can really improve the power of our bodies. And that is what I had to do with my journey.
I have been able to educate and empower women through different holistic resources to help them get symptom relief and not look at surgery as their only option.
Being that you are a nurse, what are some things that Black women should look out for?
There are four main triggers which include bloating, anemia, heavy cycles, and painful cramps. For the most part, we are made to think that those things are normal and a part of being a woman. Also, the myth that Black women have a high tolerance for pain. Knowing that you have to communicate what is going on with because doctors will take that information with a grain of salt. The standard is when experiencing those four main triggers, to request an ultrasound because the physical assessment is not enough.
Another thing is being aware of your vitamin D levels. They say that vitamin D is almost a prevention for fibroids. When it comes to Black women and our skin, vitamin D is harder to absorb due to our melanin. So, in your labs, make sure that your vitamin D is where it needs to be.
Also, your hemoglobin and iron levels are key indicators of heavy cycles. They tell you how much oxygen and blood are running through your body, and if it is low then something is wrong. So, you want to be sure to check for that as well.
So, what has been your personal experience with fibroids?
I grew up in an African household, so talking about medical issues was not encouraged. I remember my mom coming home really drained and tired, and asking her what happened. After initially dismissing me, she later said that her doctor informed her that she would need to get her uterus taken out. I asked why and she said that was fibroids.
I did not quite know what fibroids were, I just remembered the name. So, years later, while in nursing school, I asked the doctor for an ultrasound and was questioned. When in a situation like this, always go with your instincts. Something told me to request it, and after finding a quarter-sized fibroid on my uterus, I was told to just monitor it.
Now there is nothing wrong with the wait and watch approach, but you need some strategies to prevent the fibroids from thriving. There is something that you are doing that made them appear. When being told to monitor it, I feel that it is a set up because you need some information on what to do to prevent an increase in symptoms and having to request something extreme.
After later being told that my fibroids increased in number and size, I went into a depression and felt like my body failed me. Being a coach, I have always been healthy, but after taking care of others and lacking in my own self-care, my body suffered. After feeling low, I empowered myself and turned my home into a lab. I used what I learned as a nurse and fitness coach and created a lifestyle regiment to not only reduce my symptoms but shrink my fibroids. I realized that if I could do that, then I could help others.
So now, my mission is to help millions of women end their suffering with holistic resources and a community of like-minded women to live their lives beyond fibroids.
Dr. Soyini Hawkins, MD, MPH, FACOG https://fibroidandpelvicwellness.com/
What has been your experience with treating fibroids?
I am a minimally invasive gynecological surgeon and my practice primarily focuses on gynecological surgery, all ailments of women who may need surgical intervention, and the top one in my community is fibroids. Getting into that niche of fibroid surgery has become a passion of mine starting from a personal place. I had fibroids and underwent an intense surgery. Since then, I have had two children, and now in my own practice, I decided to go into this. So, managing fibroids naturopathically is just as important to me as surgery.
Aside from most talked about fibroid symptoms, what are some additional warning signs that Black women should look out for?
Unbeknownst to many, fibroid symptoms can be associated with things that we think are normal.
And while heavy menstrual bleeding is most talked about symptom, fibroids can cause back pain, frequent urination, discharge, recurring infections, pain with activities, and constipation. So, the things that we think are a result something else, could in fact be fibroids.
Do you know why Black women experience fibroids at a higher rate than our white counterparts?
The thing about fibroids is that they do not discriminate. However, Black women are two to three times more likely to experience not only fibroids but symptomatic fibroids than white women. Eighty percent of Black women will develop fibroids during their childbearing years compared to 70% of white women. The reason why is still unknown, and I do feel that fibroids are understudied and under-researched. We know that there is a hereditary component and that there are things that are a part of our diet as well as our cosmetic products and melanin. But fibroids are very multi-factorial, so from one person to the next, we do not understand exactly what makes them grow or re-grow.
Do you feel that Black women are ignored when we discussing our symptoms with our doctors?
Yes, and that is a part of the problem. Therefore, there are movements focused on educating and advocating and empowering women to understand their bodies as well as options for treatment. What has happened, especially with Black women is that if we have a bad experience with the doctor, we get dismissed. It then becomes a thing of guilt or that we put it away, or we feel like no one is going to help us. Then when we do find a doctor that is willing to help, Black women are only offered hysterectomies, when a lot of times, they are asking for something minimally invasive.
What are some things that Black women should keep in mind when advocating for themselves?
Do not be afraid of getting a second opinion or finding someone who is going to listen. Also, understand that what you hear, may not always be what you want to hear, but a good doctor is going to help you understand your options. The understanding is what helps us, especially Black women, to embrace that and feel like we are a part of our health care team. It also helps to relieve some of the mental anguish that comes along with it.
Contributing Writer, Racquel Coral is a lifestyle writer based in Chicago. Find her on social media @withloveracquel.