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:
Do with these women getting together, I guess. What are you because I agree with you, like, sharing stories is so important. I went through a fertility journey and I remember going to resolve the National Infertility Association, and unfortunately, I found out about them towards the end of my journey. And so I was like, I wish they were here all along because it's helpful to hear the nuances of what people can do and their own stories, to feel like you're not alone. But what are you finding in these communities as far as what has been most surprising to you? I should say, as people have had these opportunities for community.
Tanika Gray Valbrun:
I think when I started the organization, I was very surprised to learn that people well, I don't know if it was surprising because I was like this, that people just don't want to share. They don't want to share. They feel like it somehow demeans them. There's a privacy factor there's that once again, how are people going to view me? What if I cry about this? What if I get emotional about this? Nobody should see me that way. And I think we just put so many limits on ourselves when we don't share. I do agree, though, that you have to be in the right place to share and you have to see that hope beyond sharing. So I'm definitely not criticizing people who don't want to share.
Georgie Kovacs:
Oh, 100%.
Tanika Gray Valbrun:
I do feel like I was so surprised by the amount of DMs that we would get that would say, if you started a private group, I'd be happy to share my story but don't want to put it on Instagram. I get that to a certain degree, but the desire is still there to want to talk about it, to want to be in community. I will say I think that one of the things that I was really surprised about was just the interactions that women and people who are managing life with Fibroids are having with our healthcare system. The amount of people who we hear stories of dismissal, of pain, offered hysterectomy the first time they were diagnosed, which I was one of those people. I was offered a hysterectomy the very first time that I went. Not the first time I was diagnosed, but the first time that I was going to see what my treatment options for Fibroids were. I was told that I should have a hysterectomy. So I'm just very surprised by that in this technologically advanced age.
Tanika Gray Valbrun:
And there's so much literature now coming out about hysterectomy. And I'm no doctor, so I don't want to quote it. But hysterectomy and its connection to the brain and the connection to the brain and the impact and the dementia that is caused I bring that up because there are some connections to hysterectomy that's coming out in literature now that maybe if we knew this 1015 years ago, hysterectomy wouldn't be just the number one treatment option.
Georgie Kovacs:
I mean, it is surprising. So I interviewed Dr. Juan Camillo Aronia Ferreira, and he was working at Myovant, and now they merged with Sumitomo, and now he is at Organon, which is another women's health pharma company. And he is quite a passionate he was an OB GYN, and now he's like a chief medical officer. And it was interesting, I had interviewed him and Kaylan Taylor Clark, and it was interesting that the ACOG, the American College of Obstetricians and Gynecologists just want to say that for those who may not know, they actually put out new guidelines around OBGYNs, not looking at hysterectomies as the first thing that they should offer more options. And this is not just related to Fibroids, this is anything. And what's so interesting is when I try to look for the guidelines, I can't see them. They're not public, and I don't think they're purposely keeping it secret.
Georgie Kovacs:
I'm sure there's a lot of reasons and the way doctors work with how things happen. So I'm not at all bringing that up to say it's a secret, but just know it's. Like, don't try to Google it, because you probably won't find it unless it's been released since the last time I looked for it. But even ACOG is recognizing that sometimes the world of clinicians has been too quick to do hysterectomies.
Tanika Gray Valbrun:
I was just going to say I really appreciate that because it starts from those agencies and those organizations saying something that then can influence our members of Congress and other stakeholders. There's also some new guidelines from I believe it's ACOG as well that talks about abnormal uterine bleeding and what is considered normal. And now normal is what you think is normal, and if it's disrupting your life, maybe that's not normal. And before there was some measurement of.
Georgie Kovacs:
Number of tampons and stuff.
Tanika Gray Valbrun:
Yeah, exactly. Have no clue. No clue. When those things happen. I do think we need to applaud it because when things aren't going well, we have a critical thought about it.
Georgie Kovacs:
So since you've had so many women engaged in the community, which is so great that you're building, what are you finding from on the ground? Has been working for people. What I really want to focus on is communicating with clinicians. And I don't know if clinicians are also a part of the community, but I'd be curious what doctors wish that women would do.
Tanika Gray Valbrun:
Oh, that's a great question.
Georgie Kovacs:
Yeah. So I guess let's start with the doctor, actually, because we've talked so much about the patient. Let's start with a doctor request, and then I would love to learn what is probably something we wouldn't think of that women would probably want to know that you've learned from your community has been like the AHA that's hopefully helped them along their journey. So what does the doctor have to say?
Tanika Gray Valbrun:
We're definitely an organization that loves our physicians, right. We don't pretend that we don't need them, but we also have messaging that says that you are your own best health advocate, right. And you are the CEO of your body. So we believe that the physician patient relationship is an equal relationship. And obviously there is a person who is standing in front of you who has had four years of residency, four years of fellowship, all of that, and their expertise lies there. But you are the expert on your body. From what we've heard from doctors that we partner with all the time, we have an advisory council of doctors. They need us to understand that we cannot come in with the kitchen sink.
Tanika Gray Valbrun:
Like, it's not the time. We need to be able to articulate what is happening in our body. Now, no one says that you have to go in calling a period a mensis and menorah and all the clinical terms, they're not asking for that. But they want for us to be more specific about the things that are ailing us at that particular time. So that means coming in with your journal of what you ate this week when to the right of your belly button just started burning. So now they know, okay, that potentially could be a ruptured ovary. That potentially could be a polyp. And I think what I'm hearing from physicians is that there's so much I don't know or just the kitchen sink of things that it's hard to come to a resolve because there's so many things going on.
Tanika Gray Valbrun:
And on the flip side, when we do that as patients, that's kind of when you get the doctor who shuts down and starts writing on the pad or starts on the keyboard or brings their practitioner in because it's just too much going on. They're thinking about their next patient. They're thinking about I don't know what to prescribe. I don't know what to tell you, or next steps. And as patients, we have to understand that their goal is to get to that.
Georgie Kovacs:
As you know, I've been hearing this since I've been doing this podcast. The first person who said it to me was Dr. Allison McGregor. She wrote a book called Sex Matters, and she is an Er doctor by training. And she found, like, even her mother was struggling with navigating the healthcare system, and that was her thing, is, okay, everyone, we are the expert on our body. The clinician is the expert on the medicine. And I feel like we've been so far apart, and I think with women's health, it's even more so because there is so little research. And let's face it, we don't know about our bodies.
Georgie Kovacs:
Like, time and time again, I hear insert something you're suffering with. You go on this journey, and then you become an advocate or a founder of a femtech company. It's like, that seems to be the path or you're both. Or a podcaster like me, which I plan to do more of. But anyways, it is an interesting journey, and I think all of us recognizing we have a role to play, because, look, I use the hashtag medical gaslighting as well, and it is a popular one, but it seems like there's really a role we all have to play in having a good health care experience.
Tanika Gray Valbrun:
Absolutely. I would argue that it's one of our important relationships in life, and I think we have to look at it as an important relationship. No, everybody's not going to be a great doctor because they're human. So find your person. I often say finding a good doctor, finding a good therapist is like dating. Like, you got to go through a couple of them, and that's okay because you're worth it. And you need to find someone who understands your style and you understand their style and can communicate to you in a way that is effective to you. For a long time, I was just like, I need somebody who has had a myomeectomy.
Tanika Gray Valbrun:
Like, I need a doctor like that because I need them just to understand what's not that you can't understand if you haven't had a myomectomy. Clearly you can. There are plenty of doctors to prove that. But it was what I needed. I needed a woman who has been through this, who understands when I say, like, that churning feeling on the right side of my belly button, you get it. There's this authority figure, the person in the white coat, and we just feel like we can't say anything because we don't know how to talk their lingo. And I think that from the patient side, doctors need to talk more of our lingo sometimes, too. Everything doesn't need to be menorah, you know what I mean? Like, everything doesn't need to be two CCS or four CCS or just say a period, you know what I mean? Just normalize some things for me and make some things lay.
Georgie Kovacs:
What else have you heard that would be helpful from your community, from the women who've been struggling, what have been some surprising things that have worked for them?
Tanika Gray Valbrun:
Yeah, so there are a lot of things because as I talked about earlier, there are so many variations in fibroid stories, but a lot of people have talked about just the components of the whole body wellness, right? So really thinking about what mental health plays in this, what nutrition and diet plays in this, what community plays in this. There are so many people who come on our page, come to our events, and who talk about the power in their community and the power in the community that we've created and that they feel like they are part of it. You can go on our Instagram right now, look through our comments and see how many people talk about just how we've gotten them through the journey. And I'm always like, who's we? I'm like, I get it, white dress project, but we're a white dress project. So we've all gotten each other through the journey of learning what questions to ask, being confident in speaking up, not knowing the terminology to use, but knowing how to effectively describe your symptoms so that a doctor can help. So understanding those things, understanding when you are being dismissed, understanding that you can have an opinion over here, but yes, you can take another PTO day to have another opinion over here and confer with those opinions, take the opinions of your family members, and then ultimately understand what you want for yourself in the end.
Georgie Kovacs:
We don't always think about it until we've become the advocate and look back, but I think it's those of us need to share it with others. It's like, be clear. You don't have to go into a doctor's office and react. And it's not to say your doctor is going to say something bad, but if you're not clear, how can your doctor best help you if you're all.
Tanika Gray Valbrun:
Over the place, they want clarity, and then when we come in with all the, then they don't know how. And that's why I say it's just like any other relationship, if I come home and I'm like, my husband's like, what's going on? So people match energy, right? So I think that being in community, having conversations, doing research on what your issue is, gives you that level of clarity. Now, there's a difference between clarity and being psychic, right? And just knowing what's going. To happen in the future? No, but when I was going to have this third myomeectomy, it was one of the hardest decisions I've ever made in my life. And that was because my small intestine was attached to my uterus and there was a fibroid behind the small intestine. So in order to get that fibroid, my small intestine was going to have to be moved. And Georgie, all these years of advocacy, myomectomy, blah, blah, blah, I was like, Wait, you got to do what? Touch the thing that my food goes down and something happens and then it helps me do number two. Like what? You can't touch that.
Tanika Gray Valbrun:
And then it became, depending on how many adhesions you have or how stuck together things are, we may have to cut no? Right. So it became not only a myomeectomy, but it became a bowel resection, which it's all good. We're talking about fibroids, I'm familiar, but bowel resection. So for me, that was just the scariest thing. And the only way I made the decision was becoming clear. I had a miscarriage October 20 of 2022, and I just had to be clear. I want the motherhood thing. And do I want to look back and say that I didn't do everything I could? Now, I do believe that there's a point you get to where it becomes difficult to make those decisions and people who have stopped on the journey, I completely get it.
Tanika Gray Valbrun:
But I knew that the fear of all the things coloscopy, all those things, something going wrong with my bladder that was also attached. I also got to try. So my North Star is just wanting to be a mother. That's it. But I didn't want to have another myomeectomy ever. So, yeah, you can have clarity and still not know what's going to happen or still not be becoming clear. And to your point, about every area of your life really leads to sound decision making. And being confident in your decision, whether it works out or not, is not up to us.
Tanika Gray Valbrun:
But more times than not, as you rightly said, things conspire to work out for you.
Georgie Kovacs:
What do we do with social media? Because when you're struggling, you'll do anything to get your goal achieved. And we used to joke in the infertility world of like, if they said, stand on your head for ten minutes and you'll have your baby, it will get done. And so we're in this weird space where, yes, I think we all advocate for clinical trials, but we can't wait for the years to enroll the patient, conduct the trial. What do all of us do in the meantime? And now social media is taking over, but not all of it is factual information. Well, it's hard to say evidence based because of all that we had just discussed, but yeah. What's your thought there? And let's all clarify, neither one of us are doctors. So from a patient advocate perspective, who works with doctors. What's your advice?
Tanika Gray Valbrun:
Yeah, that's a difficult one, because I speak from a place where all of this is happening to me currently, you know what I mean? Like, I had surgery August 31, ten weeks ago, so all of this is happening to me, and I go down those rabbit holes. I was telling a girlfriend of mine the other day that social media, you populate it with kind of what you want to populate it with. But even all the motivational things, I'm like, okay, one day God is with me. One day you're smarter than your fears. And it's just like, all the things you're right. The people I follow and all of that, they're all positive. But I was telling her, I was like, even that gets overwhelming. Like, I find myself being like, yes, I'm a winner.
Tanika Gray Valbrun:
I can do all things. I can dream. And I'm just like it just becomes all overwhelming. But I think it comes back to clarity again, knowing who you are, knowing your beliefs, and investing in yourself. I just don't think we give enough credence to the power of investing in yourself. And investing in yourself, just like an investment is a long game, you know what I mean? It's not a quick fix. So investing in yourself means research. It means finding the right doctors.
Tanika Gray Valbrun:
It means trying a new diet and seeing what works. It means that if somebody says something over here, you hear it again. There can be triple and double and quadruple checking, because there's so much of that that is happening now that this social media world is just rampant with misinformation, and you have to believe and have value enough in yourself and want to make the investment in yourself that you say that, I can't believe this first account. I want to know more. And even if I am going to believe it, who else is saying it? So it's really my therapist always says we got to ask more questions all the time about all the things. Just know our value and our worth more, that we're worth the research. You're worth the extra PTO day to go get a second opinion. You're worth getting on a plane to fly to a specialist.
Tanika Gray Valbrun:
You're worth it because we do it in so many other areas of our life. There was a time in my life, if a girlfriend was having a birthday, I'm there. I don't care what you want to go out, right? I'm there. So I think we just need to have that level of investment in ourselves.
Georgie Kovacs:
Yeah, you're absolutely right. You're absolutely right. It is both as simple and as complicated as that.
Tanika Gray Valbrun:
Right, exactly.
Georgie Kovacs:
But no, I think that's such a fair statement, and I think it's such a smart way to end on this discussion. And I would encourage first, thank you for being so vulnerable and sharing your story and sharing being truthful. There is no end. There is no like, therefore you've achieved. I mean, I really appreciate this. And for those who want to know more about uterine fibroids specifically, I would encourage people to go to your website and I'll put that in my show notes. I've also done a couple of interviews on uterine fibroids. So if you want to have more the scientific data driven where surgery comes into play and all that from the doctors, check that out as well.
Georgie Kovacs:
Yes, please do. I really appreciate your time and let's keep spreading the word because I think this is just a broader episode on how do you advocate when you just can't find an answer.
Tanika Gray Valbrun:
Yes, absolutely. And thank you, Georgie, for all the work that you're doing. I find it so admirable know you've had the conversations that you've had with physicians, with clinicians, with researchers. I know Kaylan very well, she's a dear friend of mine. So when you've had all these conversations, but you say to yourself, what is missing? And you seek out the patient voice and know that that is an integral part of the conversation, I really appreciate that because truly, you could have wrapped your segment without it, right. But you recognize the importance of the patient voice and and anyone that understands the power of storytelling and the power of these anecdotal moments, I just really appreciate you understanding that. So thank you for your time as well.
Georgie Kovacs:
No, absolutely. Thank you.
Tanika Gray Valbrun:
Thank you.
Disclaimer
**The information shared by Fempower Health is not medical advice but for informational purposes to enable you to have more effective conversations with your doctor. Always talk to your doctor before making health-related decisions. Additionally, the views expressed by the Fempower Health podcast guests are their own and their appearance on the program does not imply an endorsement of them or any entity they represent.**
**Contains affiliate links and I will be compensated if you make a purchase after clicking on my links**
コメント