Learn about uterine fibroids, treatment options, and self-advocacy from Tanika Gray Valbrun of The White Dress Project, an organization that supports women through this under-researched condition.
Uterine fibroids are noncancerous growths in the uterus that can cause pelvic pain and debilitating periods. Up to 80% of women may experience fibroids before the age of 50, but this condition remains under-researched and misunderstood.
In this episode, Tanika Gray Valbrun joins to discuss uterine fibroid facts and share hope for women grappling with this condition. She tells her story, voicing her commitment to raising awareness through her organization, The White Dress Project.
Tanika leads the conversation about patient-doctor communication, listening to women’s voices, and the importance of community support. We discuss the link between black women and fibroids, and consider why there remains a lack of research in women’s reproductive health.
Tanika Gray Valbrun is the Founder and Senior Advocate of The White Dress Project, a non-profit organization committed to spreading uterine fibroids awareness. Ms. Valbrun is an award-winning journalist, educator, and non-profit founder with a passion for women’s health. She works with doctors, health advocates, and elected officials across the country to get legislation passed, including having July declared as “Fibroids Awareness Month.”
Discussed in this episode:
Facts about uterine fibroids
Tanika’s experience of uterine fibroids, surgery, and advocacy
Racial disparities regarding uterine fibroids
Patient advocacy when communicating with healthcare providers
Uterine fibroid treatment options
Challenges in women’s health research today
The White Dress Project and its influence on women’s access to uterine fibroid support
“I always say that a patient's story is data, especially with something like uterine fibroids, endometriosis, or PCOS. There are variations in how it can show up in your body.” - Tanika Gray Valbrun
Related to this episode:
Related Episode: Uterine Fibroids and Heavy Periods
Related Episode: Uterine Fibroids | Minimally Invasive Surgeon Dr. Jessica Opoku-Anane
Related Episode: Uterine Fibroids and the Need for Better Standard of Care
The White Dress Project: www.thewhitedressproject.org
White Dress Project Instagram: @wecanwearwhite
Tankika’s Instagram: @tgvwearswhite
Twitter: @wecan_wearwhite
Facebook/Meta: The White Dress Project: We CAN Wear White
Mentioned: 'Sex Matters' by Dr. Allison McGregor
American College of Obstetricians and Gynecologists: www.acog.org
Recommended Books on Your Body and Menstrual Health
If you want to support this women’s health podcast, leave a review for Fempower Health on iTunes or Spotify.
Spread the awareness and share this episode with someone you know!
Support and connect with our women’s health community:
Subscribe to the Fempower Health Podcast for new episodes every Tuesday
Visit us online at www.fempower-health.com
Sign up for our weekly newsletter for the latest announcements, news, and research
Email us for inquiries & outreach: info@fempower-health.com
Transcript
Georgie Kovacs:
So if you're seeking connection, understanding, and expertise straight from the heart, join us as we dive deep into the world of patient advocacy with Tanika Gray. And if you'd like more information on uterine fibroids, specifically, check out our show notes. Now let's get real and learn together.
Georgie Kovacs:
How are you? I know you had surgery, and there's a lot of stuff going on, so I just wanted to check in how you are.
Tanika Gray Valbrun:
Yeah, I appreciate you doing that. It's day by day. I have a really good therapist. I have a really supportive husband. I have good friends. But there's still that feeling of, like, how am I still here? I'm the advocate. I shouldn't be here. Those kind of, I don't know, privileged thoughts, maybe, but also very real thoughts.
Tanika Gray Valbrun:
For me, I felt like I could have maybe advocated my way out of this, or I know all the things to say. I have doctors on speed dial. I can text all the greatest doctors for fibroid treatment, and yet I'm still very lost in terms of just figuring out what next can be done to allow someone like me to have more of a voice, more stories. Like mine to be told. And so that people who are managing life with fibroids don't have to be in this position where they're dealing with this for years on end. For me, what I've recognized is that I've been through fibroids at so many different intervals of my life, so even as a young woman coming into adulthood and womanhood, then as a career woman, then as a wife, as a friend, so all the ways I titled myself fibroids has been there. And I just think that's an interesting conversation, because in each of those roles, you play something different, right? So how do you show up in each of those roles with fibroids? My first myomectomy, I had this very similar thought, and that's how the White Dress Project got started. My second myomeectomy was not as invasive because they didn't take out as many fibroids.
Tanika Gray Valbrun:
I thought again, but I was in the midst of white dress projects. I was like, okay, this is my work now, this third one, and we're coming up on the 10th year anniversary of the white dress project. I'm just like, Wait, hold on. Ten years. So that means I've been talking about this for ten years, which means that I've been and the entire time I've been a patient. So I think that all settled in. And I think when you are home recovering, all of those things that are happening in your body to allow your body to heal, blend with your emotions. And I'm reading some books right now that talk about the intersection of emotion and your physical being.
Tanika Gray Valbrun:
And the more and more I read, the more and more I'm learning that they are very far from being separated. They're very close, I should say, and I just don't know why we're not talking about that more. And really have done quite the opposite in culture, which is personified and gotten this message out there that they are so separate. So, yeah, that's a long winded way of saying I'm good today, and I don't ever really get poor or really down because I can't lose hope. I just can't.
Georgie Kovacs:
Right, I hear you on that. What is your hope?
Tanika Gray Valbrun:
My hope is that I'll be a mother or that I am a mother. My hope is that uterine fibroids, and not only uterine fibroids, but reproductive health issue issues will really be taken seriously is not even enough of a word. It doesn't have enough grit to it, but just highlighted, recognized, delved into, investigated, like, all the verbs that we can find that would showcase care and that we believe that this is a public health issue. So whatever needs to happen where that is the ingrained thought in our legislators, in our physicians, in our clinicians, in our pharmaceutical companies, in our medical device companies, whatever it is that needs to happen that says this is a public health issue, this is something that's happening to women. This is something that's happening disproportionately to black women, whatever the middle is in between there, that's what I want to get to. So that's my hope. I had a conversation with somebody yesterday, and they said that maybe it's too late for me. She had had five myomeectomies and just kept having myomectomies because she didn't want to have a hysterectomy.
Tanika Gray Valbrun:
And she was like, it's probably too late for me, but I literally don't want my nieces to go through this. I don't want my cousin to go through this. And I have hope that there will be more people that will have that desire to ensure that that's where we get to.
Georgie Kovacs:
This is an interesting way to start because we're talking about what's needed, and so maybe we back up a bit and talk about how did we get here today? And not like a women's history aspect, but what is going on with fibroids that there's still much we don't know? Because as you pointed out, you're the advocate and look at how much you're struggling. And so, dear world, if the advocate can't get an answer, we've got a problem. And so let's start with how prevalent fibroids are. I mean, at the end of the day, most of us by the time we're 50, are going to have fibroids, correct? So this affects all of us and disproportionately black women. And by the way, do we know why?
Tanika Gray Valbrun:
So we don't know why, but there are a host of theories out there that suggest there's something in our genetic makeup. There's talk around the chemicals that we use in our hair. There's talk around the foods that we digest. But a lot of it doesn't make sense to me because there are white women that have chemically relaxed their hair. There are white women who don't eat well and eat fatty foods, et cetera. There are white women who have high estrogen. There's that. But the genetic disposition that I've heard that theory on, that's a take as well.
Tanika Gray Valbrun:
But once again, the funding is not there to really support that science or support that research. So honestly, we don't know. But it has been proven in literature and just from clinical trials and data that black women get fibroids. They grow larger, their bleeding is more severe, they're more likely to be offered hysterectomy and have hysterectomy. So yeah, those things are very prevalent. So this is definitely not to say that white women, Asian women, Latino, X women don't get fibroids because they absolutely do. And anyone with a Uterus can get some type of fibroid, right? Not if you have a uterus, you will have fibroids, but if you have a uterus, you can have the symptoms of uterine fibroids. This is a woman's thing.
Tanika Gray Valbrun:
But the subtitle is also that this disproportionately impacts black women. So there's something to be said as to why ours are growing larger, why we're having more symptoms, and why we're being offered hysterectomy. So add it to the list, Georgie, of all the things that need to be figured out, which is a large part of my frustration, there are certain things that we're doing in this country as a culture, as a society, that are just so mind blowing. Just some of the technologies and things that we've been able to do even in the last five years. And some of the stuff that we're asking to be investigated not only for women's health, but just for, or I should say, not only for reproductive health, but just for women's health in general seems so archaic. Like we just decided that this is where the energy needs to go and the funding needs to go, then this is not anything we can't accomplish, is what I'm saying.
Georgie Kovacs:
So when you were saying that there's a lot of things that are being done that are so archaic. And by the way, for those listening who, if you're a patient, you're probably listening because you're fed up. You might be a clinician, you might be someone who wants to build a startup in women's health. I think regardless of your perspective, understanding this will be helpful because at the end of the day, we don't want to feel alone if we're the patient. And by hearing how complicated this is, it kind of is like, oh, okay, so it's not me. And it's really about the self advocacy, which I know your organization does a lot with, which I want to make sure we cover as well. But just going back to this archaic way, what, in your view, is so archaic that we could easily change with the tools and technology we have to date? What is missing?
Tanika Gray Valbrun:
Well, I think I'll start with the simple question of if we know that fibroids impacts women the way they do and impacts black women disproportionately. That first question is something that we haven't answered yet either. Like, why are fibroids disproportionately impacting black women? So I think what needs to happen immediately is the level of research that I'm no scientist, right? I'm no researcher, but I feel like there are just some baseline things that we don't know, like the impact on black women, what is the impact on Asian women, what is the impact on Latino women? And I think just those understanding how the disease is impacting bodies regardless of race is something to me that is not necessarily elementary. But for me, it's just like a baseline of where we are. There have been a lot of improvements in terms of treatment options for uterine fibroids, but those that are still on the surgical route are still pretty invasive, and it's still considered a huge surgery. So I just feel like there's some baseline research things that we don't know, we don't understand. The relation between uterine fibroids and fertility is just like gray area all the way. The relationship between fibroids and PCOS fibroids and endometriosis, fibroids and adenomyosis, all of those things.
Tanika Gray Valbrun:
I just feel like our and I'm no scientist, right? So maybe they're not baseline, but in my lay view, I just feel like there are so many other things, especially in oncology and especially in heart disease, that there are just so many more nuanced things that we know and details and data that we have that we just haven't invested in women's health. So I'm really just kind of asking for the baseline and then we can get to the pretty fancy stuff. But can we just at least know how many women are diagnosed and why are they diagnosed and what are their treatment options? And for a long time we didn't even have that information. So I think it's just something that is we don't need to invest in that research for whatever reason. Because partially I think it's because there's a disproportionate impact on black women. I think in this country overall, we just have a tainted view of women's health and what deserves to be discussed.
Georgie Kovacs:
It's interesting because you were talking about that we're not really looking at the impact on the diversity impact of uterine fibroids. However, what's also interesting is I feel like it wasn't that long ago, maybe by now it has been a while where we weren't even really looking at clinical trials and how drugs even impact women versus men. And now we're trying to go to the next layer deep. So, yeah, the FDA mandated women partake in clinical trials since 92, which is when I got really interested in all of this because I actually wrote a paper about it. But the execution on that has been difficult. And I've been to conferences where women researchers have apologized on stage for not researching women's health because they're rewarded by how many research papers they publish, which means they have to do them quickly, which means quick clinical trials, which means not women. And even there's some books out there which hopefully I can interview one of the authors around how even AI is becoming biased because it's all around what you feed into it. So there's a lot of complexities that you're right people have to be thoughtful about.
Georgie Kovacs:
And I am seeing change happening and it's coming in some wonky ways. As a consultant, I would love to be able to go in and build this strategic plan of what are the dots that are connected for women's health, and as a result, what questions do we know versus not? And then thoughtfully put the research together because it is complicated. And answering one question with everyone doing it separately is just going to be so hard because it does take such a long time.
Tanika Gray Valbrun:
I want to understand what role they and they know, members of Congress, just key stakeholders in this area, what they think we can do as patients to ensure that we're a part of the conversation. Because I always say that a patient's story is data, especially with something like uterine fibroids, especially with endometriosis, where there are ampcos, where there are variations in how it can show up in your body. We always talk about the women who don't have heavy bleeding as a symptom with fibroids, but her pain is so extreme. Or somebody like me, who has always had heavy menstrual bleeding but could manage my pain. So there are just things and variations that these reproductive health issues cause that really if we took the time to listen to patients stories, come up with an anecdotal archive of stories, that we could really pull some strong data that could become scientific evidence. And I really believe that strongly. And once again, I'm no scientist. However, I just feel that strongly about the power of the patient's story and what people experience with reproductive health.
Tanika Gray Valbrun:
There's just a story to be told there, and that story can correlate with data in some way.
Georgie Kovacs:
So tell me then the role that you are playing with the White Dress Project.
Tanika Gray Valbrun:
It's exactly what I said in terms of how our stories are used. Our organization encourages and quite frankly, I'm just going to be bold and say our organization, the White Dress Project, has revolutionized the way that women talk about uterine health. I believe specifically uterine fibroids. And I'm not saying that we weren't talking about it ever before, but I feel like having this organization for ten years, seeing the work that we've done, seeing the transformation on social media and did we do it alone? Definitely not. But I believe we spearheaded and really got women thinking about how they feel and how they're encouraged and how they're part of a community when they tell their story, how they're helping themselves and helping someone else when they tell their story. So when I say there is power in our story, I'm a journalist, so I have been trained and taught and fully believe the power of someone's story. And I just don't think we are there in our healthcare system. I think that a lot of times as patients, we don't know how to articulate well what is happening with us, because we don't always see that being in the doctor's office and conversing with your physician is a two way street and that you have the authority to share what's happening in your body.
Tanika Gray Valbrun:
So those are the things that we.
Georgie Kovacs: