Powerful The Podcast
Season 2 :Episode 3 A Candid Conversation on Fibroids and Women's Health with Genetra Robinson
Together, we dive into the genetic component of fibroids, shedding light on common misconceptions and the various treatment options available, such as surgery, iron transfusions, and hormone-free birth control. Genetra's insights and experiences are invaluable for anyone wanting to learn more about fibroids and how to prevent and decrease the chances of developing them. So, join us for this informative and empowering conversation with Genetra Robinson and let's continue to raise awareness on this important women's health issue.
Powerful The Podcast Intro
Powerful the podcast Outro Music
Together, we dive into the genetic component of fibroids, shedding light on common misconceptions and the various treatment options available, such as surgery, iron transfusions, and hormone-free birth control. Genetra's insights and experiences are invaluable for anyone wanting to learn more about fibroids and how to prevent and decrease the chances of developing them. So, join us for this informative and empowering conversation with Genetra Robinson and let's continue to raise awareness on this important women's health issue.
Powerful The Podcast Intro
Powerful the podcast Outro Music
Welcome to Power For The Podcast. My name is Shalonda Carlisle and we also have Dr Bianca Bulder, and today we have a wonderful guest, and May is actually Mental Health Awareness Month, it's actually Maternal Mortality Month, it is Mother's Day. It has a lot of different educational awareness month, but one of the topics that I thought would be really good to showcase and bring more awareness to is frybroids, so we have a frybroid advocate today. Janetra Nicole Robinson is a resourceful and devoted independent educational consultant with vast leadership experience with a rich history of success, advocating for the adoptions of the right teaching strategies to improve students' academic performance and low performing schools. With a background in education and finance, she has taught previously an online education policy class to certify educators to increase their understanding of different theories and concepts in this area and train them on how to formulate and implement appropriate education policies. She is also a former public school classroom teacher, certified in elementary education, k-6 and business education, 7-12. Janetra currently works as a full time capacity building assistant specialist with My Brother's Keeper Incorporated, a national nonprofit community based organization seeking to reduce health disparities throughout the United States through programs meant to ensure health care equity and promote the well being of minority and marginalized populations. In collaboration with CDC, janetra oversees the coordination, planning and delivery of a variety of capacity building, assistant activities through evidence based interventions and public health strategies. Janetra is also the director of community events with Jason Quinn State Farm. Born and raised in Northwest Jackson, mississippi, where she has lived for over 40 years now, genetra understands the problems facing minority groups and children in this area and has devoted her life to advocating for justice and equity. And a stute organizer, distinguished educator, event planner and graphic designer, genetra is an active member of her church, new Mount Zion Missionary Baptist Church, where she served as the president of the Bible class, and has also been the chair of Women's Day and Black History Month. She's also a member of Stilettos on the pavement, a women in business networking group seeking to unite women engaged in business within the community. Her interests include going to wine tasting events, traveling, spending time with her parents and her spoil pub, chichi.
Speaker 1:Welcome, mr Genetra. I had the pleasure of meeting Genetra when she was a teacher at one of the elementary schools and she had a passion in making sure that her kids had everything that they needed to be successful in that school setting. She would always get school supply, get donations. She really wanted to make sure those kids had everything that they needed to have academic success. So I know her from that great advocate for kids and she's also a great advocate for people who live with fibroids. Today we want to talk about you know. You know what's fibroids and some of the different things that individuals that have fibroids face. Genetra, would you like to share your personal story with fibroids?
Speaker 2:Sure, I will share my personal story. It's like where do I begin?
Speaker 1:Tell me what fibroids are, because a lot of people may not know what fibroids are.
Speaker 2:Okay, so simply, fibroids are just benign tumors or growths that grow inside of a woman's uterus and they are non-cancerous. That's what fibroids are. My personal story, and I often wonder, like, where does my personal story with fibroids begin? because I had fibroids a long time without knowing I had fibroids, because I was exhibiting so many different symptoms which I thought time was just a normal, just came with me having a period, i would say, and so I just thought things were normal because my cycle was heavy. I had blood clots and this was like more than a year's time A lot of stomach discomfort, heavy pressure in my abdomen, and so and I can just that was went across a couple of years of what not had pain in my back, pain in my side, and so I probably had all the symptoms. I used to go to the bathroom all the time and that went on and From what I can remember, i Know, probably starting I won't even say starting from as far as I can remember back, i'm gonna say maybe like 2010, my surgery was in 2015, but anyway. So when I knew, knew I had fibroids, i was diagnosed in 2000, early 2015, i was diagnosed, and so what made me go ahead and go to the doctor and Just cry for help. I'll say I was.
Speaker 2:I I Was dealing with a lot within the last, i'll say, 18 months of the year prior. Like my dad had a heart attack and he went into this, into the hospital, he had to have a triple bypass, and so, like I was, just I was overly tired, i was just weak, like to the point where I just feel like I was gonna pass out. I slept all the time. My cycles were really really heavy and I just felt I felt less than Like I just I felt like I just had nothing left to give. And then it, and then I had like, like really heavy clots, like nothing I had never seen before.
Speaker 2:So I had a conversation with my OBGYN and so She was like well, janice, or you know you're not in your 20s anymore Or, excuse me, she's like you know you're 20s anymore. She's like you know your body's changing. And she was like you know, you might want to just like lose some weight or whatnot, and you know things are probably to get better. And I was like, okay, but uh, you know I'm in the back of my mind. I'm saying to myself this thing don't go away when you're losing a few pounds, but anyway. So Maybe a couple days after that I was like talking to a friend girl of mine Who's an who's a nurse, and she just happens to be a nurse for an OBGYN at the time and I was just telling I was like I don't, i don't feel good.
Speaker 2:I was like I don't feel good no day of my life. And I was like and if I'm not, if I'm not feeling good? and I was in the klares room, i was telling her, if I'm not feeling good, my, my children definitely can't get my best. And I just telling her what was going on, man, she was like no, she said something going on. She was like I'm gonna, i'm gonna bring you in to see my doctor. She told me to make an appointment And she will move me up to that week.
Speaker 2:So when I came in to see her doctor, her doctor, uh, she sat down, she talked to me and she thought so. She was like you need to tell me what's going on. So and I told her, i was like you know, i sound having a lot of pub pain during my period. I said, i said I I'm sleeping a lot. I said I'm really tired every day I told, i said I could sleep the day away. I told her that, um, i was having really, really heavy clots, and so she was like, okay, she said that doesn't sound normal. She said, but I'm a chick, yeah.
Speaker 2:So she laid me back on the table. She asked me did I mind, you know, getting a physical exam? I said no. So she did a physical exam on me, you know, um, touching my face, touching like my thyroid, my breast and everything. And then she got down to my, my stomach, and she was like, oh, she was like she was like you know what? I'm gonna send you for a bed, i'm gonna send you for a vaginal ultrasound, she said. She said I feel like there's something in there, and so I said okay.
Speaker 2:I said, well, i can tell you one thing It's not a baby, because I have not been able to have six in months at all, because my even though, like because my period would get like really light but it never would completely go off. So she sent me so a vaginal to get a vaginal ultrasound down the hall. And there was another thing I had never even heard of a vaginal ultrasound before that day And my previous OBGYN. I had been seeing her for years, ever since, you know, i had, you know, private insurance, like I, i left the health department and started with her and I had never, ever had one.
Speaker 2:But anyway, i went down the hall, got the ultrasound on and I and I, obviously with ultrasound, i knew something was going on, because the ultrasound takes, like she took like a million pictures. She was taking pictures. She had like this little rule on the screen And I'm not a trained, you know, technician but I don't know what she was looking at because I couldn't see what. I couldn't see what she was seeing, even though we were both looking at the screen. And I asked, i was like what do you see? And she was like you're gonna talk to the doctor in just a few minutes. She's like I'm almost done. And so when we finished, she gave all the images to the doctor and, and my doctor said she's like janitor. She said you have something that's really common Amongst the african-american women. She said you have fibroids and I said, okay, i was like what is that? because that was the first time I had ever heard of it And she told me what it was and.
Speaker 2:I said oh, and I remember picking up the phone calling my mom And my mom was like oh, i've had those too. I was like oh, because me and my mom had never discussed it. And so but? and then my doctor said she was like you know. She said I will be able to, you know, to help you out. She said this was this, is this? this won't make your life Visible anymore. So she said but I'm happy to see you to get some blood work. So she said me immediately get some blood work. And she said I want you to come back in a few days.
Speaker 2:So I went downstairs, got my blood work done and then I was on my way out the door and As soon as I pulled out the parking lot, she was calling me on the phone. She was like janitor, i need you to come back. Well, she said, matter of fact, i don't need you to come back. She said I need you to go straight to university Hospital. And I said why? she said I need to admit you in the hospital. She said because your blood levels are so low. She said I'm gonna need to give you a blood transfusion. And I said uh, i don't know about that. I said let's do something else. I said, because, as long as I say, as long as I don't pass out. I said, uh, let's, let's, let's try some alternative. Me that. I said we, if I pass out, you have my permission to do anything to keep me alive. I said, but, uh, let's try some alternative methods to To to be of the iron back up in my blood. Because that's what she was trying to do. That's because that was severely anemic. My iron was so, so low. So we went through months of What did she put me on? She put me on a prenatal vitamin. She put me on a very high iron supplement And I was eating lots of spinach and leafy green vegetables to build the iron back up in my blood. So I would be, so I would be ready for surgery. She scheduled me for some, some more tests. I had to have an MRI Come to find out.
Speaker 2:The reason I was having so much pain is because My fibroid I no-transcript was intramural and it was sub mucosal in the uterus. I had one large one. It was they roughly compared it to the size of a soccer ball. It was full of fluid and it was leaning on my, on my left ovary. So that's what was causing all the pelvic pain and the side pain that I was having, and so this was February and so my surgery ended up being in June. So it it took that amount of time and plus I wanted it in the summer anyway, because that's when school got out. So it just kind of worked out perfectly when I had my surgery.
Speaker 2:So after my surgery, believe it or not, it was so, it was so it was. It was not outpatient, because because my, my fibro was so large, it had to be inpatient and I was in, for I was in the hospital three days and I had to, so I had to have pretty much a cesarean section And so and I had, and they stapled me back up and I lost like 22 pounds because so that's how much fluid the fibroid had Inside of it. In my recovery time I was off work. Well, i was off work the whole summer but literally my it took my body over a year to heal from from that whole surgery, from the fibroid surgery. But I will say there was probably one of the best surgeries I've ever had, because I I felt like I had no type of quality of life when I had the fibro, as they literally was sucking the life out of me. You Feel free to ask me any questions that you would like. Okay, i wanted to let you get through with your story, janita.
Speaker 1:Go ahead.
Speaker 2:Your story is, like many black women, that after the age of 30, they began to experience heavy bleeding. They experienced blood clots, they experienced the abdominal pain, the pelvic pain, the rectal pain, the pressing on the bladder, frequent urination, painful during sex, bleeding. In between their periods, like you mentioned, you had some light bleeding that never kind of went away. It kind of lingers on in between. And, like you said, your mom had fibroids. When you have a genetic component of fibroids, most women, if their mothers had it or their cousins or aunties had it, they had it.
Speaker 2:And one of the reasons the doctor initially said had loose weight. There's a portion that if you lose weight it's supposed to help With the development of the fibroids or to decrease. However, fibroids every month, they're like leeches, they just drain blood. So even though you were eating the healthy, iron-rich foods and doing what you needed to do, when you have that cycle every month or when your cycle continues all the way throughout the month, your body never really catches up And so you become severely agonizing And then the only option is iron transfusions, blood transfusions or then surgery. Do you think fibroids like every totally resolve? Will they ever be resolved, totally resolved? No, no, did your fibroids come back?
Speaker 2:I don't know. I actually just had a conversation with somebody today and I said I'm going to go back and X to get checked for them. I asked that question because most often when you have surgery, the doctors do an amazing job of removing all of the fibroids. However, there are benign tumors that over time sometimes in a year, sometimes two years, sometimes four or five years they come back In the way you know. They come back. Of course, you have those same symptoms that fourness in your bladder, that fourness in your pelvic area, or those blood clots or heavy bleeding. It kind of sneaks up on you, right?
Speaker 2:The heavy bleeding is starting to sneak back up on me Exactly.
Speaker 1:So that's why I was asking you about the misconception that you have.
Speaker 2:So that's why I was asking you about the misconceptions Do they ever really resolve? because a lot of females are led to believe that I've had this surge, I've had this mild mechemia and my fibroids not going to come back. Oh no, I would lead to believe that my doctor was awesome in educating me on it and giving me the information that I needed. To show him he had to get more information. So I'm well aware that they can come back and I guess the reason I wasn't familiar with them in the first place, So like when my mom was diagnosed, hers was kind of different. So like my mama was like diagnosed with hers when she had me. So when she had me she got her tubes tied, but then she also scheduled a hysterectomy at the same time for a later date, So she didn't have any issues with her fibroids. Okay, that makes sense.
Speaker 2:So when I was going, through what I was going through. My mama didn't know to tell me you might have fibroids. You know what I mean. Yes, i can actually speak to that. I think that the majority of the women in my family that are all over 30 have fibroids. It is very predominant in the African-American female population And obesity has been known to be a contributing factor. You typically have problems with fertility. Some fibroids have even caused miscarriages. Fibroids have caused women to have urinary incontinence, painful intercourse, lower back pain.
Speaker 2:This unexplained That's all they have for me when I had it. So they have not just surgery, which is a mild mechomy, we call that. The bikini line, where you say you have the caesarean section, is right above the pubic area. I didn't have that, i had a vertical.
Speaker 1:They did a vertical on you.
Speaker 2:Because my size was of a sacrobalt, so they had to cut the fibroid out of me. They had to cut it in pieces to get it out, because it was one solid mass. Some women have fibroids and they never know that they have fibroids. What do you think some strategies not from a medical standpoint but from your own experience some strategies we can put into place to decrease or prevent chances of getting fibroids? Well, just okay. So from my own research and just from me being in the field of public health now, i know this can be genetically predisposed or whatnot. And so since we know that, and we know Obesity is a factor in all of that, we can start off by educating pregnant moms how important, you know, having a good, clean diet for their children are, so they can have start off with well-balanced meals, because I don't think a lot of parents know what well-balanced meals are because they want to feed their children or these fast foods and they get all this saturated fat and everything and their children are obese And a lot of times I feel like obesity as a child leads into, you know, an early onset of puberty, which is another thing that they have tied to.
Speaker 2:You know, fibroids as well, i also feel like, in addition to that, you don't know you have fibroids, but when you do have them, hormones make them grow, like you know birth control hormones, estrogen and progesterone. Well, opt for a hormone-free birth control if possible. You know, if there's something you and your doctor can agree upon, it works for you so that you don't cause your body any more harm. Because once I found that out, i ain't been on birth control since It is. Birth control is not even an option for me. Well, some, you know some women do for progesterone, only birth control. Some women do find relief from their fibroids, like depopovera, but most times depopovera causes women to gain weight correct, make their bones brittle and causes you osteoporosis.
Speaker 2:You have some IUDs that are progesterone only, but there again you have those other side effects that most women do not want to deal with. So you do have some hormone options out there, but, like you said, a hormone-free option would be best because it would cause a lot of women over the age of 30. And after the age of 30, you have other complications, like you have high blood pressure, you have diabetes and hormones we all know can cause blood clots.
Speaker 1:Right, it causes other things.
Speaker 2:And high blood pressure. Yeah, so if you have diabetes, if you have high blood pressure, you have other comorbidities. You don't want to add hormone derivatives to the mix, i would say, because it's just going to make things kind of worse. Exactly From my standpoint, i feel like other women need to have more conversations, but our girlfriends, our children, like our daughters, our granddaughters, and talk about those female complications we had, so that we'll know what to look for if that does happen. Like your mom didn't talk to you about it because of course, she had a hysterectomy before correct Right, and you didn't. So it was an absent thought She didn't know what to look for She didn't know to talk to you about it.
Speaker 2:Rather Right, so we has. She still had her uterus. She probably would have talked to you about it because she definitely would have had problems with it. Right, exactly. And see, i don't want to say because I came along so much later in life, all the women in my family at that point, once I grew up, had had hysterectomy. So there was nobody. I was the first one to experience fibroids in the manner that I did.
Speaker 1:One of the other things that I wanted to kind of talk about before we end, and we have had conversations about it do you feel there's enough education or support from providers in the community? No, Because I know, you said. I know we've talked about how you may go to one provider and they may not educate you as they need to, but you was fortunate enough to have a provider that provided their support for you.
Speaker 2:The second provider, not my original one. My original one did not educate me at all. Matter of fact, she didn't do anything And it was the second one who educated me on it. Even almost 10 years later, when I go into the doctor's offices, into gynecological offices, i don't see a handful that says do you know where uterine fibroids are? Are you familiar with them? Do you know about these different procedures? Do you know what to do? Do you know, if you have these symptoms, what you may have?
Speaker 2:I don't see commercials. Well, i take that I have seen one commercial on the television, but as far as locally, here where I live, where I go day to day in clinics, i don't see anything, any type of education about it, and that's very that's to me. It's just as important is have blood pressure and diabetes, because you have a lot of women like me that was there, walking around every day with a smile on their face and they do not feel good and don't know why. Right, unfortunately, in the community, these Black females are under looked. When we go into the gynecologist and say we're in pain, oh my God, they don't do a vaginal ultrasound and bring awareness to the fibroids. So you're actually correct.
Speaker 1:Me and Jernetra at a panel discussion was called the White Dress Project. It's an actual good resource for fibroid awareness. Jernetra, would you like to tell them a little bit more about the White Dress Project? I?
Speaker 2:actually was very honored to participate in the panel with the White Dress Project. So the White Dress Project, just like Shalonda said, is a nonprofit. It is a nonprofit organization and it was created to empower those with fibroids to be fearless. It was started by Tanika Valburn in fact, let me pronounce her last name I think it's Valburn, last name Gray And she started the organization because she is also an African-American woman who has had fibroids She's all of her life and she's also had issues with facility and she started her mission to gather and support and promote national awareness about the fibroid epidemic among people domestically and globally through education, research and advocacy.
Speaker 2:So, and it's called the White Dress Project because she believes in, by educating people about fibroids, the treatment options and sharing our stories together, she hopes to embody all women who have experienced fibroids to wear white because, as you know, when you have fibroids and you're heavy bleeding all the time, we don't wear white pants, we don't have white sheets, we don't wear white. And I'm still skeptical about wearing white. Now The only thing white is my car and this is. And I don't even have white underwear. I'm just being honest And it's more now of just of fear, even though I don't have the exonance that I used to have, but she has created this nonprofit and she goes around to different cities and states and she has these empowerment branches and it's an intimate setting where she encourages women to just share their experiences with fibroids and just let them know that you have a voice and you have a support circle and you don't have to be afraid. You know them in touch with physicians and other people who've had those experiences So they don't no longer have to feel like that they're alone.
Speaker 2:Because I know one young lady when they came to Jackson one young lady she was the only person in her family who had experienced fibroids and other people in her family had children and she just felt she said she was debating the back coming because she just felt so alone in this and she was like I'm so glad I came today because you know I'm hearing y'all stories and it's just resonating with me like it just made me cry because I was like. I was like you know you're not alone, we are your support system because we all can identify with the same thing. So what she's doing in her platform is just a really great thing. She's doing it all around the United States.
Speaker 1:Absolutely, and if you want to know more about the White Dress Project, the website is the whitedressprojectorg. We will put that information on our social media website. I just think it's really good the things that she's doing. I think it's a really good thing what you're doing, janitra, being an advocate for individuals that are half fibroids and the challenges that goes along with that. It hinders you or you have challenges physically, but also mentally. it can have some mental components to anxiety, depression. Some have suffered some post traumatic stress as well. So I'm just thankful that you were able to come on our platform to share awareness about fibroids. Thank you for joining us today. I want to just thank you for coming on, and this concludes our Fibroid Awareness session today.
Speaker 2:So I want everybody to take care. Y'all take care too, thank you.
Speaker 1:Bye Have, a good day, bye Have a good day.