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00:00Thank you guys so much again for joining us.
00:12Very excited to be here as both slash like a moderator and a panelist because all of
00:18us have been touched by some way or another with our five board journey.
00:25And so I would like to actually hand it off to Tanika first and I want her to introduce
00:31herself quickly and then what we're going to do is for the first several minutes talk
00:36about our individual stories and how and why we have a connection to five boards and then
00:42we'll kind of do a little Q&A and delve more into what are five boards and specifically
00:47talk about a little bit more in depth after that.
00:49So Tanika, introduce yourself again and then obviously you can tell people about the amazing
00:53things that you're doing and then how five boards have affected your life so much.
00:58Hi everybody.
00:59How are you doing?
01:00How are you feeling?
01:01Good.
01:02Good.
01:03I'm so happy to be here at Essence Fest and I'm so excited that Essence has taken the time
01:09to have this space, hold space for people who are managing life with fibroids because
01:15we know that 80% of black women will suffer with uterine fibroids by the time they are 50.
01:21So having this conversation is so important.
01:25I am Tanika Gray-Valbrun.
01:27I am the founder of the White Dress Project.
01:29We are a non-profit organization that is dedicated to raising awareness about uterine fibroids and
01:36we do that all across the country.
01:38And really what we're trying to do is encourage people to share their stories with uterine fibroids
01:45and make sure that they understand that they do not have to suffer in silence with fibroids.
01:50We are a patient advocacy organization, community-led, and we really want to, like I said, encourage
01:58people to share their stories.
02:00My story started probably around the age of 14.
02:04I was having really, really heavy menstrual bleeding, bloating.
02:09I was that girl that just always looked pregnant and, you know, I'd go to school and they'd be like,
02:14Tanika?
02:16And I'd be like, no, I am not pregnant.
02:19Or, you know, the girl in college who would always have to stop at a rest stop, you know,
02:25when I'm driving home because I had to use the restroom.
02:28Frequent urination is a symptom of uterine fibroids.
02:33And the first time that I went to a doctor, he told me that I needed a DNC.
02:39And our resident OBGYN is here who can explain all of that.
02:44But I was so petrified by that because I had never heard about a DNC.
02:48I didn't know what it was.
02:50Anyway, fast forward, I got married, was diagnosed with uterine fibroids, and when I decided that
02:58I needed to handle them, I was told that I needed to get a hysterectomy.
03:04And I was all of 28 years old.
03:07And I just felt so devastated by that, you know, having, wanting the desire to be a mother
03:13for so long and someone telling you that the first time you speak to them is devastating.
03:18So fast forward, I found another doctor.
03:22I was able to have a myomectomy, which is the surgical removal of fibroids, which Dr. G will
03:28talk about more.
03:29And in that surgery, she removed 27 fibroids.
03:34And that was my first surgery.
03:36And I've had a second surgery to remove more.
03:39I had another surgery five years later.
03:41So I say all that to say that when I went through that journey, I realized that there
03:47was no one who was talking about fibroids, no one who was suggesting, hey, let's walk,
03:53run, let's do something.
03:55So when I didn't see it, I created it.
03:58And so that's how the White Dress Project was born.
04:00The name comes from the fact that when you have fibroids, you don't feel comfortable wearing
04:06white clothing because your periods are always out of control.
04:11And the bloating, I will make one caveat that not every woman who has fibroids has these symptoms.
04:18But for me, it was my Achilles heel.
04:22And so I proudly wear my white dress in support of people with fibroids.
04:26Oh, that's awesome.
04:28Thank you so much.
04:29Girl, 27 fibroids just for your first surgery.
04:34That is phenomenal.
04:36I mean, like, just overwhelming to even think about.
04:40Thank you so much for sharing your story.
04:42Because a lot of people, you know, women suffer with this all the time, y'all.
04:45And they may not necessarily feel comfortable with talking about it.
04:48A lot of them, unfortunately, don't even know.
04:50And then sometimes when they do find out, it's too late.
04:53To where sometimes they need a hysterectomy because they have not had any of that guidance
04:58prior to that point of assessing their body.
05:03Maybe they've complained to their doctors, but they kind of just have brushed them off.
05:07And so it's very important to find a physician and just a medical team that supports you and
05:12understands you, especially as a black woman.
05:14Because I can let Dr. G share the statistics of just how underserved we are as a community,
05:21as a black culture, but certainly as black women.
05:24So Dr. Killespie, who has been inside of me, around me, she's the one that actually removed
05:30my fibroids.
05:31She's seen more of me than my husband, basically, and my parents from when they changed me from
05:36when I was a child.
05:37So, very close.
05:39Nonetheless, I will let her explain her particular personal journey with fibroids.
05:45And then obviously she does this for a living.
05:46So she's a medical professional, very, very well trained in the knowledge of fibroids.
05:51But the crazy thing about it is that we still don't know so much.
05:54So tell us a little bit more about your background, obviously, your credentials, and then why you
06:01are so connected and so passionate about fibroids.
06:03Sure.
06:03Good afternoon, everybody.
06:06As was mentioned, I'm Dr. Veronica Gillespie-Bell.
06:08I'm an OB-GYN here in the New Orleans area.
06:11And for my fibroid journey, I was a junior in college at Xavier.
06:17XU.
06:17I see some XU folks out there.
06:19So I was a junior in Xavier, and my mom told me she needed to have a hysterectomy because she had fibroids.
06:25And I was like, what are fibroids?
06:26I haven't heard of this.
06:28Of course, as a typical Southern black family, we didn't talk about it.
06:31So I started doing research.
06:33And so I started looking, and I was like, wait a minute.
06:36There's nothing to do for this.
06:38All you can do is surgery or take a crappy medicine to have a more minimally invasive surgery.
06:44That's it.
06:44I'm going to find the cure for fibroids.
06:46And so that was really how I started my journey.
06:50And I've now matriculated and realized finding the cure may not be realistic in my lifetime,
06:56but I really have dedicated my clinical practice to making sure that women have options.
07:02I've been the principal investigator on several clinical trials.
07:06And it's sad to say that that was in 1999 when I was reading that there was nothing to do.
07:13And it wasn't until 2020 until we had the first FDA oral medication for treating fibroids.
07:20And so, again, I really have made my clinical practice around making sure women have options.
07:27Not only am I the president, I'm also a client.
07:30So I've also had a myomectomy.
07:32I was not able to have a minimally invasive myomectomy because no one in the area does the procedure except for me.
07:38And so I wasn't able to have that option.
07:41But glad that I was able to have my fibroids removed, was able to conceive and have my son.
07:47And, yeah, that's how I got started down this pathway.
07:50Well, thank you for sharing that.
07:51I think it's very unique to obviously have someone like Dr. G that not only has been a patient,
07:59but obviously has also experienced this with so many women that it's literally changed their lives of a lot of women just give up hope that they can't have kids anymore.
08:10They don't even really think that it's ever an option for them.
08:13So in the New Orleans area, we are behind in a lot of things, some in the medical field.
08:19But when it comes to fibroids, we are not in a lot of that has to do with Dr. G.
08:23So I appreciate all that you do for our community because it totally makes a difference.
08:26Shout out to Dr. Jessica Shepard in the audience.
08:29If y'all don't know who Dr. Jess is, she's amazing.
08:33These both are like incredible black women that are OBGYNs that we need and we don't have enough of them.
08:39So it's too late for me to go to school.
08:41So y'all are going to have to carry the torch.
08:45I'm not that disciplined.
08:47I'll tell you guys a little bit more about my journey.
08:49So I will be 37.
08:52My husband and I have not had kids yet.
08:54I've been very adamant about focusing on my career for a very long time.
09:00And my husband and I got married really late.
09:03And so for me, it just really wasn't an option until now to think about even having children.
09:08And with that being said, my mom, who was in the audience when I was in college, got several, I think, 14 fibroids removed, which was insane.
09:17And I didn't even really know what they were until then.
09:19So I was actually blessed to have her experience that because I started getting screened very early, way earlier than what I probably would have ever gotten until I probably started having symptoms.
09:31And so I got screened for many years in my 20s.
09:35And then finally in 2016 or 17, I found out that I had a tiny, like one centimeter size fibroid didn't bother me at all.
09:44My menstrual cycles have always been very heavy my entire life.
09:47I've always had a seven to eight day cycle.
09:49It's been very consistent.
09:51I've always had bad cramps.
09:52So I just kind of thought that that was just a part of my journey, which partially it was.
09:57And then as I started to monitor my fibroids, they were increasing double in size every year.
10:05I ended up, and Dr. G can tell you, I had one large one and then three tiny, small ones that were hidden by that large one.
10:13And so I was just having all of these problems, going to the bathroom every 10 minutes.
10:17At my worst point, I was changing my tampon, not a super, not a super plus, in ultra every 10 minutes.
10:25Like, it was unbelievable.
10:27I never wore white.
10:28I never wore any colored bottoms, which is part of the reason why I have light colored pants on today, because I feel more comfortable doing that black everything.
10:35You did not ever not see me in black bottoms because I was just so uncomfortable of dealing with that.
10:40I'm on television five days a week.
10:42I was dealing with this while I was on TV, where we don't even have a second to go and pee, let alone, like, change a tampon or do any of that.
10:49And so it started affecting my everyday life.
10:53And I actually had another gynecologist that I had been seeing for years, but she had older patients.
10:59And she actually was more comfortable with doing hysterectomies at this point in her career.
11:04She had removed several patients' fibroids.
11:07But I wanted to find someone who did it on a regular basis, obviously, who could even offer me a minimally invasive option for surgery.
11:15And then she suggested that I go and see Dr. Cillespie.
11:19And I'm glad, especially as a black woman, I try to be very strategic of the medical professionals that I see.
11:28So if I can find anyone who looks like me, that's great, that's a plus, but I actually want them to be good at their job.
11:33I'm not just going to go see you because you're black, because you might be black and bad.
11:37So, good thing is that Dr. Gillespie is black and she's good.
11:40That's what she does.
11:41And so now, you know, I feel more confident that hopefully one day soon that Mohsen and I can have children.
11:49And so that's kind of in a nutshell where my story lies and then kind of where we all have intersected.
11:55So, Dr. G, I want you to tell us a little bit more because it's very rare that we have somebody of her caliber that can obviously share information with us.
12:03All of us have shared our experiences, but she can share more of the clinical side of what are fibroids?
12:10Because a lot of people, we've heard of them, but we may not necessarily know.
12:13Are these things that could possibly be cancerous?
12:16What exactly are they and what do they do and why do they cause so much negativity in many women's lives?
12:22So those are great questions.
12:24These are the questions that we are often presented with in the office.
12:27So fibroids are benign tumors of the uterus.
12:30They are the most common cause for hysterectomy.
12:32There is a cancerous type, Lyomyosarcoma.
12:36Fortunately, that type is very rare.
12:38So fibroids either start out as benign or they start out as cancerous.
12:42They don't convert, so that's great.
12:44But they do affect black women more predominantly.
12:49As was mentioned, 80% of black women will have fibroids by the time they're 50.
12:5370% of white women will have fibroids by the time they're 50.
12:57But for black women, we're more affected in our reproductive years.
13:00We have a higher burden of disease, meaning we have more fibroids.
13:05We have larger fibroids.
13:07We don't know exactly why that is.
13:09There are some theories about estrogen receptors because we do know fibroids grow because of exposure to estrogen.
13:16And so there's some theories around that.
13:19But above the fact that we are more affected, which is something we may not understand, but what we do understand is because of implicit bias, we are less likely to be offered minimally invasive options.
13:33So when we look at women, black women compared to white women, same size uterus, same number of fibroids, same BMI, black women are not offered a minimally invasive option.
13:44And black women are not offered options that conserve their uterus.
13:47So we are disproportionately affected in several ways.
13:51Awesome.
13:52To piggyback off of that, what are some of the signs that we can share with people that they may look for to show if they may have fibroids or not?
14:03Because some people, you know, you may not necessarily know.
14:07Yeah, the most common sign is heavy menstrual bleeding, as was discussed in Tanika's story, April's story as well.
14:12But for me, for example, I had no problems with bleeding.
14:17It was pelvic pressure.
14:19It was fullness.
14:20It was peeing all the time because the fibroids were on my bladder.
14:24So we see that quite often.
14:25Sometimes for women that have multiple miscarriages, we find that they have fibroids inside the cavity.
14:32Also pain with cycles, pain with intercourse.
14:36Those are all signs of having fibroids.
14:39Yeah, absolutely.
14:40I just wanted to mention one more thing, which is this idea of normalizing what your life is like, right?
14:48So I grew up in a household where, you know, women, we get periods, just deal with it, right?
14:55It is what it is.
14:56So I decided, or I started to normalize what was a heavy menstrual bleeding.
15:03And I was just like, oh, this is just how periods go.
15:05And it wasn't until I thought about the fact that I've never, ever in my life worn a tampon or I've never not had to carry extra clothes with me or extra pads with me.
15:19So I think another underlying symptom is recognizing what is important for your body, what is normal for your body.
15:27Because what works for you doesn't necessarily work for me.
15:29Also, another thing I wanted to mention was just anemia and being able to be aware of what your blood count is.
15:39Because I've had seven blood transfusions because of severe anemia due to fibroids.
15:46So I think it's important for us to think about those underlying things that you may not recognize that are connected to fibroids.
15:53Thank you for sharing that. That is like, I mean, your case is one of the more severe ones that I have heard personally.
16:00To piggyback kind of off of what you said, you obviously created your non-profit because you have had such a personal experience with fibroids.
16:09Tell us a little bit more about what your non-profit does and then the advocacy that you obviously have for not only black women,
16:16but black women that suffer from fibroids and what type of difference that you guys are making in the community.
16:20Well, thank you for that. I'm so excited to share about the White Dress Project because it's my baby, it's my love.
16:27I'm a journalist full-time, but this has really changed my life because it's given me an opportunity to speak out about my fibroid journey
16:36and allow women to understand that they're not alone. They should not suffer in silence with this.
16:42So we're a non-profit organization dedicated to raising awareness about uterine fibroids and we do that by doing things like this,
16:51by starting the conversation so that women understand that talking about periods, vaginas, bleeding, it should not be stigmatized.
17:01It is not taboo. It is a part of who we are. And I'm so glad to see so many men in the audience.
17:08Men, give it up for yourselves. And shaking their heads and agreeing because if the men in our lives aren't aware of what's going on,
17:19well, you know, this is why she probably doesn't want to have sex.
17:22This is probably why she's, you know, not feeling well, doesn't want to do things, doesn't want to be social.
17:28So I think it's important for us to have these conversations with men as well.
17:32So our organization strives to do all of those things, bring community together, have the conversation,
17:39and we do it looking cute too.
17:41Hi, girl. Come on now.
17:42We wear our white dresses not because we always feel comfortable.
17:49My dear friend, Dr. Jessica Shepard, is in the audience, and she knows my story about even this weekend feeling like,
17:58well, I've got to put on this white dress and represent.
18:02But I know that when I put it on and I share my story and have impact, I know that it will help somebody else.
18:10And I know that when I'm not able to wear my white dress, somebody else will wear it for me.
18:14So really, it's a symbol of hope and empowerment and inspiration for us that we will figure out what causes this,
18:23especially as Dr. G said, that black women are disproportionately impacted.
18:28So that's why we do the work we do.
18:31I love that. That's phenomenal.
18:32Y'all, let's give her a hand because that's a lot of hard work.
18:35It's hard being a black woman girl, but it's hard being a black woman and being an advocate for other black women in general.
18:43So, Dr. G, I want you to tell us a little bit more about treatment options because obviously people may not know what a myomectomy is.
18:51They may not know the other options they may need.
18:54They only may think hysterectomy, and that's it.
18:56And we think of the worst option when it comes to the removal of fibroids, and women have no hope when they get diagnosed with this issue.
19:05So tell us a little bit more about the treatment options, and then depending on what stage you are with your fibroids,
19:10how realistic is one approach better than that?
19:13Sure. So a lot of women come to me because they've only been offered a hysterectomy, and there are so many options.
19:21As I mentioned, we now have an oral medication, FDA-approved, too, actually, for treating heavy menstrual bleeding associated with fibroids.
19:31And so for women that are wanting to conserve their uterus, their main symptom being bleeding,
19:35and wanting to have quick treatment, that is a great option.
19:39We have then starting, there are a couple other medical options like birth control pills that don't work as well, but those are options.
19:49And then starting to move into surgical options, for women that want to preserve their fertility, we do have a myomectomy that we can do.
19:56That's making a tiny incision on the skin, removing the fibroids, and for that procedure, women are then able to keep their uterus so that they can conceive.
20:05If their fibroids are not bigger, for me, bigger than 10 centimeters, and they have less than 10 fibroids,
20:11they are a candidate to have the fibroids removed robotically.
20:15And so that's through five tiny incisions, less blood loss, less pain, shorter return to activity.
20:21Patients go home the same day.
20:22And now, some of the other options, uterine artery embolization, that's a procedure actually done by an interventional radiologist,
20:30it's not done by the gynecologist.
20:32They go through the artery in the arm and block the blood vessels going to the uterus, helps the uterus to shrink, fibroids to shrink, also treats bleeding.
20:41It's a procedure, say, overnight, one to two week recovery time, but it allows for uterine conservation.
20:47And then we started also doing radio frequency ablation, that's something I started doing in the last year,
20:54where we're able to laparoscopically place a needle into the fibroid, burn the fibroid, and over time the fibroid dissolves.
21:01I usually explain the fibroid is the consistency of a raw potato, after we burn it, it turns to the consistency of a marshmallow,
21:08and does start to dissolve, 77% decrease in the size after a year after the procedure.
21:14Wow, that's amazing.
21:16Well, you should have did that on me, girl, because I was in pain.
21:21It was not an option for you.
21:23It was worth it, though, I guess, I guess.
21:25Looking back, both of you guys can actually piggyback off of this to talk about how patients, especially black women,
21:32can be the best advocate for themselves with medical professionals,
21:35because as we know, there's so many disparities in medicine when it comes to black people, people of color in general,
21:43but certainly black women, so what's the best suggestions that y'all have for women in particular to be their best advocate for themselves
21:51with their medical professionals?
21:52Because sometimes, obviously, you know, especially as a physician, Dr. G,
21:56we trust our doctors with everything, when at the end of the day, there's reasons why there's second opinions,
22:04and if you have a good doctor, oftentimes they suggest, Dr. G, actually, she was like,
22:07No, go and get another opinion.
22:09Like, make sure that this is what you're comfortable with before, basically, I'm inside of you.
22:16Because once you go in, you can't come out.
22:19Well, I think, you know, gynecology is such a personal relationship with patients.
22:27It is part of the reason I decided to do OBGYN is because of that personal relationship.
22:32So, for my patients, or for any patient, I say that you should have a provider that you feel comfortable asking any question to.
22:41Any, no, there are no dumb questions.
22:43Your doctor should always validate how you feel, validate what you bring.
22:47I shared in an earlier session that I did, one of my patients, this wasn't a fibroid case, it was a pregnancy case,
22:53but at the end of her pregnancy, she brought me a coffee mug that says do not confuse your Google search with my medical degree
23:01because she came into her visit every time saying, Dr. G, I looked on Google, I know I wasn't supposed to,
23:09but I looked on Google and I just want to ask you.
23:11But it was okay, and we had a relationship that she could say, I know this sounds crazy, but I just need to ask you.
23:18And so, if you do not have that relationship with your provider, you need another provider.
23:23You need to be able to ask those questions.
23:26Also, you have heard today, there are a plethora of different options that are available for treatment.
23:33So, if your provider is telling you a hysterectomy is the only option, you may want to see another provider.
23:41Yeah, and I just want to piggyback off of that.
23:43I always say I'm the CEO of my body.
23:46Nobody knows my body better than I do.
23:49Girl, I'm about to take that.
23:50Hold on.
23:51Go ahead.
23:51You better get that trademark before I see that.
23:53I am the CEO of my body, and while I respect everything, because I haven't gone to medical school,
24:00I haven't done four years of residency, etc., but when I feel a pain on my right side to the left,
24:08I know what that feels like.
24:09Just really quickly, I want to say that find a tribe, find a community that you can talk to,
24:16get someone in your life who can advocate for you, because a lot of times when we hear these diagnoses,
24:21we are very scared, right?
24:24And we don't overwhelm, and we don't know what to do.
24:27Do your own research, and if a doctor is only offering one option to you, it's time to find another doctor, period.
24:35And I also think that therapy helps a lot.
24:39There's something to be said about bleeding for multiple days in the month and not being able to go to work or be social
24:47or wear what you want to wear.
24:49So therapy and understanding that you're not alone is really, really helpful on this journey.
24:54Awesome, oh, thank you guys so much.
24:57That was like a plethora of information, and if y'all weren't listening, I hope you were taking notes or something.
25:03I would like to really quickly open the floor to questions, because all three of us have obviously experienced fibroids in different ways,
25:12but then we obviously have a medical professional that's here, that a lot of women and men who have relationships with women
25:19don't even necessarily know that they are suffering from fibroids, but something that either of us said may be standing out to you.
25:28So any particular questions that you guys may have, or if you had an issue with fibroids that you'd like to share really quickly?
25:34No, I know y'all lying.
25:37Y'all don't be shy.
25:38I see y'all jamming to the beat of the music.
25:40Does anybody in here know someone who has had fibroids?
25:43Raise your hand.
25:44Do we know?
25:45Okay.
25:45Can one person share that story?
25:47If it was you or if it was another person?
25:49Really quickly, like a 45-second.
25:51Come up here, baby.
26:00Hello.
26:01How are you today?
26:02Hi, I'm Julia Keys.
26:04I'm actually a primary care physician in St. Louis, Missouri, and I do have a fibroid story.
26:11So I found out I had fibroids in my 20s.
26:14I actually had very heavy menstrual periods, as you say that.
26:19And the funny thing was, when I found out I had them, I told my mom, she said,
26:23oh, I had those too, and your Aunt Pam had those too.
26:26And so we started sharing stories at that point.
26:30Actually, fibroids became a bigger issue for me when I was working on conceiving.
26:35And I actually did get pregnant, but it did cause issues with my pregnancy.
26:39I ended up having my son prematurely.
26:43He was 24 weeks.
26:44So, you know, now I'm, you know, still dealing with it today.
26:48And actually moving forward with possibly having a myomectomy, which was offered, which hysterectomy
26:54was offered to me in my 20s, and I was just not ready to make that sort of decision.
27:00And so, you know, now there are more options available.
27:03So it makes it more realistic, you know, when you still want to conceive.
27:08So, you know, it's easier to talk about now, but it's definitely a very emotional topic.
27:14And, you know, a real issue, especially for black women.
27:18So thank you guys for talking about it.
27:20We really appreciate your research.
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