Episode 99: ENDO Black Founder Lauren Kornegay

Episode 99: ENDO Black Founder Lauren Kornegay

Overview

When she first met her new gynecologist, Lauren R. Kornegay was introduced to a disorder that was unfamiliar to her at the time: endometriosis. Diagnosed at the age of 20, she experienced the pain, struggles, exhaustion, and confusion that accompany the disease. This led her on a search to find someone who looked like her — who was also living with the same diagnosis. Each time, she came up empty-handed. Due to a lack of representation and acknowledgement of Black women affected by endometriosis, she felt entirely alone. She found herself in support groups being dismissed, accused of being racist, or chastised for speaking up about the lack of awareness of anyone who didn’t resemble the primary demographic of the disease (ahem, white women). In 2015, in direct response to these experiences, she created her own community: ENDO Black, a platform designed to connect women of color affected by endometriosis, bringing them together to heal and advocate. Her goal is not only to give women of color living with endometriosis a network, but also to raise awareness among doctors and other medical professionals of the lack of representation in reproductive health research and dialogues…so they can begin to (finally) understand that endometriosis affects women of color differently — from both a medical and cultural perspective. Lauren is also a founding member of the LOLA Collective and has recently become one of the co-founders of the Black Women’s Health Coalition.

Takeaway

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Transcript

ENDO Black Lauren Kornegay Uninvisible Pod endometriosis

Lauren: All right, guys, thank you so much for joining us. I am here today with Lauren Kornegay. Lauren is the founder of ENDO Black. She herself lives with endometriosis. She's also the co-host of the new podcast, The V Dot, which is a podcast she's doing all about vaginas with Samantha Denäe, who's one of our former guests, as well as April Christina, another prominent woman in the endometriosis advocacy field. And she's also a proponent of Black business. She's got a lot going on she's going to tell us about. So Lauren, thank you so much for coming on the show today.

Lauren K: You’re welcome. Thank you for having me.

Lauren: Absolutely. So let's start from the very beginning of your journey. I would love to know when you first realized that you had symptoms, and what steps you've taken to control your health.

Lauren K: When I first realized that I had symptoms was, literally, at Morgan State University in Baltimore, Maryland. I was in, I believe, my sophomore or junior year of college. I had always had pain with my cycles. I've always experienced that. It was just something that I kind of just felt, okay, I'll just have to push through, and I'll just figure it out. However, when I was in college, I ended up having a cycle. Then my menstrual cycle went away, and then it came back. And then it went away, and then it came back. And that was when I was, like, ooh, I'm not about to be doing this much longer. So I did go to the ER, the emergency room; she gave me medication and dealt with what she needed to deal with. And then I decided to schedule an appointment with an OB/GYN in Baltimore, Maryland. She basically asked me a couple of questions. She said, “What are your cycles like?” I told her that my left knee hurt extremely bad before my cycle. After my cycle went away, my right knee would hurt. I also had sharp pains in my back, sharp pains in my chest, I had abdomen pain. She was, like, “Yeah, that's not normal.” I was, like, “Oh, okay, well, what do we do? What's next?”

So she ended up doing a Pap smear, and she realized that I had a retroverted uterus. And that is a number one symptom for a lot of women that have endometriosis. 

Lauren: So what does that mean? 

Lauren K: It’s literally tilted. From what I know, it doesn't mean … I don't want to say it doesn't mean much … but it doesn't cause fear. Like, you shouldn't be scared about it.

Lauren: It doesn't necessarily cause a health problem, but it's something that's commonly connected with endo.

Lauren K: Right. I ended up having surgery at Johns Hopkins Hospital. They diagnosed me with endometriosis on March 18, 2011. On April 28, 2011, I had to have surgery because I had a cyst rupture in my abdomen, and I had two gallons of blood in my abdomen.

Lauren: Oh, my gosh, two gallons.

Lauren K: Two gallons. That was what I was told by my brother who is actually in the medical field. Well, he’s in pharmaceuticals. It was probably a couple of days before … for some reason, I said, I'm gonna get healthy. And I decided to go run around my neighborhood. And then I was like, whoa, gosh, I'm so tired. Why am I so tired? And I'm thinking it's because oh, you're out of shape. So you'll be fine. But being out of shape led to being out of breath. Actually, in the process of running and trying to become healthy, I actually ruptured my own cyst. I knew I had a cyst because the doctor had told me that, and that's why I was taking birth control to subside it and to control it so that it wouldn't do anything. So when I went to cool off, I thought a shower would help me. I used the restroom, and I went into the shower, and while in the shower, it started to get dark. And I realized that something was wrong. But I was, like, girl, you are going crazy. You need to go lay down. 

Lauren: You were gaslighting yourself. 

Lauren K: Gaslighting myself! Because it was a new experience, and I had never felt like that. But I was, like, I think you are really hyping it up now, Lauren; you need to calm down. So I got out of shower, I could barely even dry myself, I kind of just wrapped a towel around myself and went to go to my bedroom to lay down … passed out on the ground. I still don't know how long I was laid out on the ground. I just know I woke up looking at the ceiling. After all of that, I went to my family practice doctor — not the one that was in Baltimore because I had been home at this point. It was after the surgery and I had graduated from college. So I went to the doctor that we have a family relationship with. She said, “Well, if you pass out again, you need to go to the emergency room.” So I was like, okay, that's fine. I ended up passing out at my friend's house. I went to the restroom again, I washed my hands, I left the bathroom, and my head went down by the corner of the wall.

Lauren: Lauren’s basically indicating it was like two inches. You were an inch or two away from the corner of the wall where you really could have injured yourself.

Lauren K: Literally. And my friend was so scared. He wanted to call the ambulance. I said “No, it's three o'clock in the morning. We're not calling the ambulance right now.” Ambulances, they also cost money. I was trying to think of the most convenient route. I said, “I definitely will go to the hospital tomorrow.” But before I even could get my stuff together, I called my friend and I said, “I need you to take me to the hospital. Something is wrong.” Now, my stomach started to sweat. And I'm confused. I do sweat a lot. However, I've never had one part of my body sweat more than the other part. And that’s when I got really nervous. I went in, I had multiple tests run — MRIs, CAT scans, I did a urine sample. And that's when I realized, oh, you are triggering your passing out by using the restroom. I never would have put two and two together until that light bulb went off in my head. I just tried to hurry up and wash my hands and take the urine cup to the nurse. I told her, "Hey, I'm getting ready to pass out.” She's telling me, “No, don't pass out!” I was, like, “If I could control not passing out …”

Lauren: Nobody’s trying to pass it here! 

Lauren K: She’s, like, “No, no, just hold on. Just hold on for a little bit. Let's keep walking.” And then I just went down.

My legs buckled underneath me. I looked like noodles.

Again, my friend was scared. So that was my experience with it. Since then, I have transitioned into different lifestyles. I've transitioned with different diets. I have managed my endo. I still have pain. I'm still learning about endometriosis. To this day, I'm still experiencing different types of symptoms from endometriosis. It went from just pain, to brain fog, to being nauseous, to throwing up, to having migraines, to having allergies that I've never had before. So it is a growing process for me. I am learning and I will probably be forever learning.

Lauren: This is also something for listeners to remember as well, that endometriosis is a multi-systemic disease. While it largely affects the reproductive organs, it’s also something that can affect … I mean, we hear stories about endometriosis on people's lungs and people's hearts. So it sounds like you've got the the passing-out under control and you've been able to manage things. 

Lauren K: Thank goodness!

Lauren: It sounds like you were also helped out by friends and family along this journey to diagnosis. Did you find that you needed a personal advocate when you were going to these various appointments? Or did you really learn to become your own advocate in this process?

Lauren K: I would say both. My brother, having experience with medical … my other brother’s a board member of a really top hospital in Charlotte, North Carolina. So I had people in my corner that are very, very educated when it comes to the medical field. When I was at the hospital, my first experience, my dad was there. My dad asks 100 questions. He's a man of very few words, but when he speaks, a lot of people do listen to him. He made sure … “What is this going to be? How long is she going to have to rest?” All of these questions. The second time I was at the hospital, my brother was talking to the doctor consistently. I have friends in my corner that were talking to doctors consistently to try to figure it out. It was my brother and his wife, or girlfriend at the time who is now his wife, and they were really just trying to figure out what was going on. They stood by my side the entire time. And I think it's important — even if you don't have endometriosis, whatever it may be — it's important for you to have those people in your corner.

You just want to make sure that people can advocate for you. However, you have to make sure that you advocate for yourself as well.

I’ve learned that. I did not know that endometriosis would be a life journey for me. I thought I would have surgery, and that would be it. And now I’m in a whole different space where I’m encouraging other women to be advocates for themselves. So it really took a transition for me in my life to realize that, hey, in order for you to get the answers that you need, in order for you   to get the help that you need … you have to speak up for yourself. The only thing is, it is difficult as African-American women, because we are deemed as aggressive or mean or rude, or we’re angry. So when I say something, it kind of makes me feel like I don't want to say something. Because even when I was in the hospital, probably in February [2020], I don't know what was wrong. I think I did have the flu. But I didn't know if it was all of these symptoms together — because I just started feeling nauseous this year. January was the first time. The first time, I genuinely thought that I had been hung over.

Lauren: Sure, that's fair enough! 

Lauren K: I was, like, okay, well, maybe next time, don't drink too much. Then the next month when it happened, I'm like, I didn't even drink. What is happening? I even asked for a pregnancy test. They said, “Have you had sex?” I said, “Don’t ask me questions. I could be Virgin Mary. I need a pregnancy test. Let's knock out all of the things, let's figure it out.” So even when I was talking to the nurse about endometriosis, I said, “I’m starting to feel confused and I feel like my brain is cloudy. I don't know if this has anything to do with me being sick. Or if it has anything to do with endometriosis.” She said, “Endometriosis is in your womb.” And I said, “That's not true, but I'm gonna say okay and I'm gonna let you slide on that. That is not the case.” And this was an African-American woman. And she just was, like, “All right, girl … “

Lauren: She gaslit you. Or at least she tried to, because she had limited knowledge. She didn't know because she didn't have enough knowledge anyway, so it probably wasn’t intentional. 

Lauren K: But that's also a big thing, the education. I don't ever want to be disrespectful to anybody, but I want people to tell me if they don't know. I want people to be open and say, “I don't know what that is. I've learned that endometriosis is only in the womb, but I may be incorrect.”  Because I'm the one that's experiencing it, and I have it. So you really can't tell me that my throwing-up … it wasn’t just that I was hungover every single Friday before my cycle. That's not a thing. And I realized what it was; it was cheese.

Lauren: Wow. So you were able to narrow it down, based on your eating and activity patterns.

Lauren K: Yep. And the crazy thing is … I did drink the night before. I was nauseous, but I had nachos, too, with sour cream and cheese. I thought, that was okay, that was one time. Then another time I had a milkshake from Chick-fil-A because I love Chick-fil-A. And then I was, like, huh … And then the third time I said, I got it! It took me three months, just like it took me three times to pee and realize that was making me pass out.

But I said, I'm going to figure it out, I just have to track it and see what is going on.

Lauren: That's also a note about awareness, right. That either you're someone who is journaling this stuff and tracking it. Or you're able to track it because you're aware enough of what you're doing, what your activities are, what your diet is like, to be able to pinpoint these things. It sounds like it's sort of the rule of three for you. But it’s interesting, this idea of advocacy as well, that … you've had personal advocates, you've had family and friends who've stood up for you, and who have helped you learn. But you've also learned to speak up for yourself in ways that you find to be productive so that you're not coming up against racial and gender stereotypes, as well, within the healthcare system. Which we know is very faulty when it comes to these kinds of inherent biases. Which we'll get into. But I'm also wondering … did these experiences having people show up for you, learning to show up for yourself … have they deepened your relationships, as well, with the people who showed up with yourself for showing up?

Lauren K: Yeah, I love them. I always will. To be honest, me and one of my friends, we did have a huge falling-out. I ended up moving to South Carolina, and then we just didn't talk; we ended up having a whole argument. But I was, like, that's my friend. She's the one that drove me to the hospital. She's the one that waited for me. She literally was the one that was at the hospital first, and stayed with me the entire time. And she was an advocate; she was my advocate that day, because she was, like, “You're going to see her now. She's passed out, take her back to the room, you need to make sure … " Even though I was going through it at the moment, I couldn't even really do anything. She was, like, “She's passed out twice already. If she passes out right now, it's going to be a problem. You need to see her, you need to take her to the back, you need to run tests on her.” She made sure that she called my friend Erica; she made sure that she called my brother, she called my dad. Because I wasn't able to do it. She went through my phone. She called everybody. We also were supposed to travel to South Carolina on August the 28th, too, so she went through my phone and called the people that I was supposed to travel to see — to tell them that I couldn't go. So, regardless of what we've been through, she will always be my friend — because that was something that she did not have to do. Because a lot of us have friends that don't do that type of stuff. My brother, any time anything is happening … anything with ENDO Black, I call my brother. He’s the main person that I call to ask, “What do you think about this? What do you think about that? Check out this interview, check this out … “ And he starts sending me stuff often, “Hey, I think you might think this is pretty cool.” He's my big brother. So that's one of the best parts about it. These relationships that I have with these people who are advocates for me … we were already close beforehand. However, it's made us much closer. I always look at that and I’m, like, I could never repay anybody for that.

Lauren: Absolutely. That's really beautifully said. You mentioned that you realized that you were having these nausea issues with cheese. You’ve noticed patterns, and you've been able to create lifestyle changes — be they diet, activity, or otherwise. I'm wondering what a typical day now is looking like for you? How are you balancing the demands of work and life? I know, this is a tough question, right! But as you manage potential symptom onset, how are you going about each day to make sure that you are staying in the best health?

Lauren K: Well, stress is a big one that I try to avoid. I feel like if you are not here for me as a friend or a family member, you cannot be in my space. If I'm at work, and it's too stressful, I tell my manager, "This is too much.” Because I've been in a hostile work environment, and flare-ups will start. So I have to make sure I put myself in a really good position. I have to communicate with my manager. I tell him all the time. He actually tunes in to a lot of the stuff that I do, honestly. He's very, very supportive. And even with us having conversations, he’s mentioned that his wife probably has endometriosis. and he's never known. I've been honestly blessed to have certain managers in my life.

Even when I was in South Carolina, I had a manager who has endometriosis. She saw me in pain, and she said, “No, we’re going to the hospital.” And she drove me to the hospital herself.

Lauren: That’s a good boss right there.

Lauren K: That’s a good boss. Not to say that men don’t feel that way. But with her having it, and being a woman, I think we connected so closely. I think because she knew my grandmother, she knew that she had to make sure that I was okay. So those were some of the things that I think about when managing my endometriosis. I have to make sure that the place I'm at, I'm okay. Even in daily activities. Sometimes I have to set a timer so I don't work too long. Turn your phone off. I have my phone on ‘Do Not Disturb’ after a certain time; I have to do that. Even though my staff will call me, it's not an emergency; you can wait until tomorrow morning. It may be 7pm. Because I also have to make sure I have time for ENDO Black. I have my full-time job, I have ENDO Black, I do other things on the side as well. And I have to make sure that I stay organized. Is it easy? Of course not. It's not easy. Everything is a learning process for me. But for some reason, I just keep adding things to my plate. I don't really know why. 

Lauren: It's always us overachievers, isn't it!

Lauren K: It feels like, girl, why do you keep doing so much? I don't even know. I just add some more. 

Lauren: Because it matters to you. 

Lauren K: It does. So it's just like, okay, well, now that you know these are things that you want to do, you have to make sure that you make time for it. But you have to make sure you make time for yourself. That includes making sure that I eat, because sometimes we go days working so much that you don't even know, did you eat today? So I just have to make sure that I do what I'm supposed to do. And I use my timer on my phone. 

Lauren: That's great advice. I love that. 

Lauren K: I picked this up from one of my old friends. His mom did it. Sometimes, it was, like, “You’ve got a timer to tell you to go to bed?” She was like, “Yes. Yes, I do.” And I was like, huh, it might work for me. So that's something that you have to make sure that you do. Okay, you think that you've worked on this project for a certain amount of time; at 11:30, it's time to go to a new project. At 1 o'clock, you’ve got to make sure you grab a snack or lunch. Okay, it's 3 o'clock, you need to be on another project. You’re going home from work … now that you’re home, okay, what's the next step? Are you doing extracurricular activities? Because other people have kids, they have soccer. People are soccer moms with endometriosis. So you just have to make sure you're organized and have a planner and have a log so you can track all the things that are going on in your life. And it does sound very, very difficult to keep up with.

But you want to make sure that you are on top of your game, because if you are not, your body will shut down for you.

And I'd rather shut myself down than my body shut down. Because I've had that happen several times. 

Lauren: So you mentioned that you've also been in these situations where you've had people certainly misunderstand endometriosis, or not be able to really understand what it's like because they can't see it, or they haven't experienced it. I'm wondering if you've been in situations where you've been confronted and forced to validate the existence of this diagnosis to people who didn't get it because it wasn't visible. How did those situations manifest for you? She's shakin’ her head, folks!

Lauren K: This was early on, after I was diagnosed, after I started taking it a little bit more seriously. I did research it, and I started posting about it. I had somebody telling me that it was ‘just a period.’

Lauren: Oh boy.

Lauren K: And I have a group chat screenshot. I think we had a screenshot back then. I think we did. And I said this to my friend, “How dare she? How dare she tell you?” And she was so serious. She was, like, “It's just a period, it's not that serious … It’s this … It’s that …”

Lauren: And another woman, too, to be gaslighting you like that.

Lauren K: I did not like that. Another woman. She was African-American, too, which made it worse for me. The universe really works in a different way. Because her sister was diagnosed with endometriosis.

Lauren: Wow, that's amazing. 

Lauren K: About two years later.

Lauren: That's some karma right there.

Lauren K: That is some instant karma. Because that meant that her system was going through this whole phase. And it made so much sense to me why her sister wasn't able to get the diagnosis — because often siblings think alike because we were raised by the same people. Whatever your mom is teaching you, your mom is also teaching your sibling. So it made perfect sense as to why she could not get the diagnosis. Because she assumed that there was nothing wrong and that this was ‘just the period.’ But we see how that plays out. And that's clearly not healthy.

It's not healthy to say that this is just a period, because women's reproductive health is not just a period. It's big.

There's PCOS, there's ovarian cancer, there's endometriosis, there’s fibroids, there's so many different things. And if we just say, “Relax, it's just the period,” well, we're going to be in some big trouble later on down the line when we have 9-year-olds that are having their cycles, at 9, in the third grade. They’re, like, “Oh, no, it's just a period.” But she's in the bathroom. On the ground. So I've been embarrassed … those situations where people will diminish what my pain is. And to be honest with you, the pain that I've had is not as severe as other women. They've had numerous surgeries. I've only had two. They've had 5 to 10 to 15 surgeries. And I can't sit here and tell somebody that what they're feeling isn't enough. I can't take that away from them. How do I tell somebody that their feelings aren't valid?

Lauren: Absolutely. And I'm wondering about how that's also played out in the medical system? Have you experienced undue prejudice, or even privilege, in the medical system — particularly because of the way you present? You're a woman of color. Can you see your circumstances being different if you presented otherwise — if you were a white man having abdominal pain, would this be a totally different experience — from diagnosis all the way through treatment?

Lauren K: I know there was, even talking about how my friend advocated for me. She shouldn't have to do all of that for me to be seen, when we just explained that I had been passing out and then my stomach is sweating. It goes back to just understanding and learning and growth, and systematic racism and things of that nature. There's a lot of African-American women that are misdiagnosed, with endometriosis. They are told that they have fibroids. They are told that they've caused this because for some reason; having a perm, is supposedly linked to fibroids or endometriosis or things of that nature. It's so difficult because sometimes you don't even really know, you don't notice it. Now I think about all of the things that have happened or transpired, and it’s, like, was that systematic racism when I experienced it?

Lauren: Well, isn’t that also because there's an element here that comes into play where you deal with micro-aggressions on a daily basis. So you've had to sort of teach yourself to put your head down and keep moving through that.

Lauren K: We’re conditioned. I remember being in the hospital and after I had passed out … remember I told you that the nurse tried to make me keep walking. I had passed out and I woke up with sharp pains in my back and in my stomach. Literally, it was a rising up off the ground type feeling, like oh, this is not okay. I went to sleep and woke back up — and I'm in pain. I don't know what's happening. And I was put in the hallway. I've never shared this with anybody. I was put in the hallway on a stretcher. I'm fearful of surgeries. My mother was diagnosed with brain cancer and she had surgery, and she ended up getting an infection from the surgery and passing away. So, I was fearful because I wasn't prepared for this surgery. Other surgery, I was prepared for; I had to work through it, I didn't have a choice, but this one I wasn't prepared for, so I was scared. The doctor came up. She was a sweet doctor, and she said, “You are an African-American woman that is very healthy.” And I said, “If I was so healthy, then why am I laying in the hospital bed?” She told me then that my white blood cell count had been low, so they had to wait to do the surgery. Because if they didn't wait, then I could get an infection — which I'm so appreciative of. And again, my brother was probably the one that was on it. I was in the hospital bed, in the hallway, across from where they were doing surgery. I could see the door open up, close, I could see them operating on the person. I went to sleep, and I woke up and I was crying.

I'm not a big crier, but I was fearful; I had never been so scared in my entire life.

I was super fearful. And I think back … was it okay for me to even be in the hospital, in the hallway across from where I’m about to have surgery, where they’re doing surgery? And I didn't know that even related to systematic racism.

Lauren: Well, is it a form of torture. 

Lauren K: So I was fearful. These people are doing surgery on me, and they have my life in their hands. So that's another reason … I don't want to be fussin’ these people out. I don't want to be frustrated. I don't want to make anybody upset either. I genuinely didn't even really know what was going on. So it was just really, really interesting. There have been other experiences. I live in Prince George's County, Maryland … Prince George's County is a predominantly African-American community; I went to a high school where the percentage is probably 85% to 90% African-American. The hospitals that I went to, I don't think that I've really dealt with it as much. My family doctor, she was Indian. I don't know if I dealt with that. I remember going to a gynecologist. I don't think he was white. I think he was of a different ethnicity. We never really had that discussion. But he was very nice to me. So I don't think that I had the same experiences as a lot of other people, because of where I grew up. And because I refuse to go to certain hospitals. We do have a hospital in the area that is called ‘the hospital where you go to die.’ That's pretty scary. I've known that hospital my entire life as a hospital ‘where you go to die’; I’m not goin’ there. Because we live in an interesting area, we still have zoning issues. Zoning goes back to systematic racism. If you are in this area, the ambulance will take you to this hospital. But a lot of people don't know.

Even April Christina mentioned it the last time we had a talk on The Endo Summit; she mentioned that you have a right to request the hospital of your choice.

And they have to actually abide by that once you request it. But if African-American people don't know that, then we won’t request it and they will just take us to the nearest hospital. So my experience has not been as bad as some women have shared. I am thankful for that. But I have heard stories, and I have experienced certain things. I realized that UTI is a big thing. And it may just be my thought process, but I do think, for some reason, UTIs are connected to endometriosis. 

Lauren: Yeah, fair enough. It’s a similar area. 

Lauren K: Right. So it happened out of nowhere. And I went to a new gynecologist, because I had moved back from South Carolina. I ended up getting a family doctor, but I didn't have all these other doctors that I needed. The doctor I originally wanted to go see … because I had been gone for more than three years, I could not go see that doctor. So I went to a new doctor. She's the only one with availability. She’s African-American. I get there, we talk. I'm telling her, something's wrong. She does a pelvic exam. And she is, like, “Have you had sex?” And I’m, like, “No, I haven't.” And she’s, like, “Okay, well, do you practice unprotected sex?” I just said, “I haven't had sex. So how could I practice unprotected sex if I haven't been having sex? I don't know what you're implying here." But even still, it was a little weird dealing with her. And that goes back to systematic racism, because they're judging me based off of whatever the reason is.

I could have also been judged because of the attire that I had on, or because I was African-American and I was 30.

I could have been judged because of so many different reasons. But the first thing she said was, “Okay, we're going to check you with a pelvic exam, because you may have an STI.” I get a call at work, and she’s, like, “Well, I just want you to know, we got the results. You don't have an STI.”

Lauren: Yeah, because I haven’t been having sex.

Lauren K: Because I told you that, but you weren't listening. So she’s, like, “Okay, well …”  And I was, like, “Well, what's wrong? I came to you to figure out what's wrong. And all you did was give me a pelvic exam, because you assume that I was having unprotected sex. And I told you I wasn't. And now you're telling me that I don't have an STI, which is something I could have told you in the first place. And now I wasted time with you.”

Lauren: And this is also systemic racism, that is a Black woman who is exercising this kind of inherent bias against another Black woman.

Lauren K: I literally went to you because you were a Black woman to make sure that I could get the help that I deserved. And you did exactly what I didn't want you to do. So I go to another doctor. It was a small practice, probably Bowie, Maryland; I went out there, and it was a lovely place and they were so friendly. You can tell, everything was good. I was very nervous. I went in and the nurse listened to what I said. I said … she did this, she did that. She was, like, “She didn't ask you for your urine sample? Why wouldn't she ask for a urine sample? She could have just asked for a urine sample and she could have knocked all of this out. She just wasted all your time.” I said, “I know. I know something is wrong. I've gone to two OB/GYNs at this point. For a UTI. And then when I tell you that something's still wrong with me and you’re, like, “Well, I don't know what's wrong. But you don't have an STI.”  Well, thank you so much for your help.

Lauren: And that's a problem with medical education too, right? Not only is it teaching inherent bias, but also there are some doctors where there's so much ego involved that they think they don't have an answer, and that's the end of it. Like, there isn't an answer. But that doesn't mean that you shouldn't keep looking.

Lauren K: Yeah, what's the point of you being a doctor if you're not going to do your research and assist the patient?

Lauren: Yes, absolutely. Would you also say that racial and gender inequality in the health care system is a public health crisis? Given your own experiences, but all the other experiences that you hear about, too?

Lauren K: Yes. And to be honest, I don't know how African-American men feel when they go to the hospital. I have brothers, but genuinely, I don't know how they feel. I just know that my experience has been different. And I can look at history and I see history. You have the Tuskegee syphilis experiment; you have Henrietta Lacks. Going back to J. Marion Sims, the so-called, modern day, “father of gynecology.” There was an AIDS experiment where they were trying to test people in Holmesburg, Pennsylvania, in the jail system, to do a vaccine, the AIDS vaccine. It’s kind of like we are just at a loss right now. I don't want to go to the doctor's, I don't want to go to the hospital. But I'm going to go, because I know I need help. There are a lot of African-American men, however, who are like, ‘I'm not going.’ They could break their arm. If you ever get a chance, take a look at some African-American men's hands. I have a friend. He broke his whole finger. He just wrapped it up and pulled it out and called it a day. I said, “You’re not going to the hospital??” Now his finger is crooked and squished up and to the side, because we try to fix it ourselves. We don't have time to go to the hospital.

Lauren: Well, there's a lack of trust in the medical system, too.

Lauren: That's the reason why. Because one, I don't trust you. Two, will you even see me? I broke my finger. I know it may not be as deep for some people, but I'm in the emergency room. And what else is going on? A woman shared her story about how she was in the emergency room. She's married to a white man.

Lauren: She’s a Black woman? 

Lauren K: Yes, she's a Black woman. She was married to a white man. But even he could not get help for her. She was there by herself for probably an hour or two. They said she had abdomen pain. She had been throwing up; she threw up in the waiting room. They told her she had to clean up her own throw-up. 

Lauren: Oh, that’s dreadful. 

Lauren K: It is dreadful. Her husband gets there. He's upset. He's communicating with them. They’re, like, “She's gonna have to wait.”

To the point where people are coming over and asking her is she okay? Well, no, she's not okay.

But you know, if the whole emergency room is making some type of complaint, like “She’s thrown up. Can you all see that? She can go in front of me.” They end up leaving the hospital, going to another hospital — and still waiting at the other hospital. That's a terrible experience.

Lauren: Yeah, no one should have to go through that. It's completely demeaning.

Lauren K: So it goes back to so many things. And that's why systematic racism is a thing. But you also have ageism. Depending on the age you are, people judge you. They say, “Oh, she's a teenager. She probably has an STI. She doesn’t know how to act.” And that's not okay. The whole terminology about ‘fast little girls’ … that's really not okay. It's really interesting. As a woman, my experiences are different. It goes back to what I said about African-American women being looked at as angry. It's really difficult for us to express ourselves without being looked at as that. I’m very passionate. So sometimes I will talk and I will seem aggressive. I've been told that, and to be honest, I don't care. Because if something is wrong with me, and I know something is wrong and I want it to be fixed … I don't care if I'm at work, I don't care if I'm at the hospital, I don't care if I'm in my family household, I don't care if I'm with friends … if this is passionate to me, and it's bothering me and I know it's not right, I'm going to say something. Now, it wasn't always that easy for me. I haven't always been this person. However, my mom, my aunts, they always taught me to speak up for myself. To the point where I used to talk really, really softly and they were, like, “Huh? What did you say?” I'm learning, I've learned, and I've used everything that I've learned from my mom and from my aunts and from the women in my family to be an advocate for myself. And if people have a problem with it, that's going to be a problem that they have to have with themselves. But I'm going to call it out when I see it.

Lauren: Absolutely. And you're passing this advocacy work on to other people. Can you talk to us about ENDO Black and about the work you're doing to raise Black women's voices in the health care system, particularly around endometriosis and women's reproductive health? 

Lauren K: Yes. I have an ambassadors’ program. The ambassadors' program has about 22 members. And we of course will be having more; we're looking to include more women. However, we have to make sure that the foundation is sturdy enough before we add on extra women, because I want to be as supportive as much as possible. All of the people that are involved with ENDO Black have endometriosis. I have a staff, I have the ambassadors’ program.

And to be honest with you, I started ENDO Black because I couldn't find Black women.

Lauren: Samantha Denäe had the same problem, didn't she? She had the same experience. She wanted research that included Black women and couldn't find any.

Lauren K: She couldn’t find any. So now I’m slightly stalking people!

Lauren: Yeah, but that's what I do, too. I think for those of us who are healthcare advocates, we like to go down the rabbit hole and find the people who really speak to us.

Lauren K: “Hold on … did she say something about endometriosis??” When I first started, I searched “endometriosis” on Facebook and on Twitter, and then I started following all the people that said it. I started trying to build a connection or relationship with them. And then I said, oh, it's Tia Mowry and Whoopi Goldberg. Oh, yay! But wait, I can't talk to them. I don't know these women. How do I connect with women that are famous; they’re celebrities. I passed this off. I started it to build support. I didn't start it to do interviews. I didn't start it to become this person where I get on panels and discuss things. Though I love it. I'm passionate about it. I love talking; I went to school for communication, speech communication at that. So, I love all of it. However, the first thing I do is I say, “Well, have you spoken to Samantha Denäe? What about April Christina? What about Julia? What about all of these women? What about Andrea?” I say these people because I don't want to become the Black face of endometriosis.

Lauren: Because there isn't just one. 

Lauren K: Right. And we're all different. My experience isn't the same as somebody else's experience. And I don't want anybody to think that that's the case. And that's why it's important to have research to go through how many different situations that are going on for different women. However, we have the ENDO Black Ambassadors’ Program. We have 22 women; we have California, Arizona, Texas, of course we have Georgia, New York, we have Maryland, we have South Carolina, North Carolina. We have lot of states, definitely on the East Coast. I am trying to get to the Midwest; I'm trying to get as many as possible. Because I want the ambassadors to be able to be in their communities and to do events and say, “Hey, I'm about to do a support group. Y’all come out." And I don't have to be there. I just want people to be able to talk to them about their situation, because that is really all we want. We want to be listened to. We want to be heard. So that's some of the things that I try to do. We also have a newsletter. Now because ENDO Black is getting so much love and so much publicity and so much support, our ambassadors are starting to do a little bit more. We have an info newsletter. We also have other things that are going on. We have the shirts that we are doing; we’re trying to get people to purchase this stuff so that we can continuously fund our stuff. We have an endometriosis sister who does graphic design; she does all of our stuff. So everything we have is pretty much in-house. And every time I get an opportunity to, I'm going to show, I'm going to say, “Hey, don't forget about her.” So even when I have my events … I have mocktail and cocktail events with ENDO Black, and we talk about skincare, hair. We talk about sex and relationships. We talk about different things and foods that you eat. We have a chef who is in New York; she came out and she spoke. I want to give other Black women platforms to speak about their experiences. But I also want them to talk about the things that they do in life.

Because we don't just have endo. A lot of us have businesses; a lot of us are mothers; a lot of us are sisters.

Some of us are in relationships. Some of us have great recipes. I want people to be able to say, “I know who to go to for this.” And feel comfortable going to that person and knowing that, hey, I'm not even going to have a problem with opening up and sharing my story with them, because I already know that this person is a good person. They work with ENDO Black. She's posted with them a couple of times. Maybe I should reach out because she's in my area.

Lauren: And you guys are also working to create change in the medical system, too, aren’t you, and legislatively. You're working on a campaign right now, right?

Lauren K: Yes. That's one of our goals. We work for the laws, regulations and policies to change. When I started my goals … I have the basic goals … but then it transitions to having educated dialogue and conversation surrounding women's reproductive health. We started the Black Women's Health Coalition and that is in partnership with Kyla, Samantha Denäe and April Christina. And it was really collective, so it's not necessarily just ENDO Black; it is all of our platforms put together in one, and based off the conversations that we have with women who look like us and tell us, "Hey, something's not right.” You know, if I have a situation, that's that's one thing. But if I have a situation, Samantha has a situation, Kyla has a situation, April has a situation, all 22 of the ambassadors have a situation, the whole ENDO Black staff has got the same situation …

Lauren: Common ground.

Lauren K: Something has to change. So we decided to start it. And it is something that is going to grow. We’re going to keep pushing it. We are targeting 10 top hospitals. And again, we are not doing it to blast them; we’re not doing it to tell them they're not doing their job. What we are doing is trying to say, “Hey, I just want you to understand where I'm coming from.”

Lauren: And here's how you can do even better than you're already doing. For those who are tuning in, there is a direct link to all the Black Women's Health Coalition info — which gives direct links further to emails that you can send at the touch of a button, phone calls you can make, and everything on my link tree on the UnInvisiblePod Instagram. But it's also available through ENDO Black so whichever platform you're on, you'll be able to find that information as well. 

Lauren K: And thank you for that. I really appreciate it.

Lauren: Well, that was really important. You have created the perfect resource, the perfect way to continue this conversation about Black health, but Black women's health in particular. To actually reach out directly to institutions. You've made it easy is the other thing. So there's really no excuse not to take the five minutes.

Lauren K: Very accessible. We worked hard on that. When I said we thought of every single thing, we were really, really trying. We did the Google link … hey, if you lose the information, if you lose all of the information, if you can find that Google link that you shared with yourself, you still have access to everything.

Lauren: And it's expanding, the information is expanding every day. You guys are adding to it. There are six key tenets that you're working toward in terms of just institutional change, as well as legislative change.

Lauren K: Right. Accountability. We're asking for education in the school system. We’re not asking them to go to the school and have a health class.

Lauren: That’s what you guys do!

Lauren K: Right. Samantha does that already. We're just asking for you to connect with somebody that has something to do with you. So you can bring these young people in and educate them. Because that's the way you get it. And honestly, if they were smart, they would listen to us. Because that's recruitment for your hospital. That’s how you recruit more doctors. That's how you recruit more medical staff — whether it's an administrative assistant, whether it's people working in the hospital who do the equipment, whether it's the people who make the equipment. That is how you recruit.

So, at the end of the day, we're coming up with ideas for you to be better.

Lauren: And taking on the patient voice is never a failing system. It’s always about focusing on patients.

Lauren K: And I'm aware that some hospitals may already have a patient advocacy group. And that's perfectly fine. But we're hoping that before we come to your hospital, you are like, “Oh, you see what they did over there? Let me change it before they even say anything.” A press release so that people will see that we already did it. “Oh, come over to us. We don't want any problems.” It's just a heads-up. Because somebody already said when we added new hospitals to the list, "It's women that are ready." So we're just asking hospitals to take a second look at some of the things. We're asking for diversity training.

Lauren: It’s very basic, some of that stuff, too.

Lauren K: And they probably already do this stuff, but it needs work.

Lauren: That’s the thing — or they aren't doing it right.

Lauren K: That could be the case.

Lauren: They think they're doing diversity training. But maybe it's a white person teaching it. It’s just about understanding other voices outside the system, isn't it. Voices that don't have a vested interest, who want to be counted — because they're the ones who are directly affected by what happens within the system. 

Lauren K: Right. And to be honest, as a teacher, as an educator, I have diversity training. I know that when a Hispanic person or a Latino person comes in, the first thing you do, if they are not fluent in English, is get a translator. That is the first thing that you do; you do not speak to any of these people without a translator. Because you can mix up a message, and that will be the end of it. How are you going to fully understand what that person is saying? That is something I literally learned through training, and I also worked at the Department of Social Services. We could not talk to people on the phone. “Hold on, ma’am.” We even had that at the retail store where I worked; when they wanted to come and buy shoes, “Ma’am, hold on.” I’ll get the sale because I want her to buy the shoes. But she's Hispanic. And I want to make sure she understands everything about this sale before I just go in. I can't spend somebody’s money — and they don't understand. So I had to make sure that every experience that I had, whether it was a retail store, whether it was the Department of Social Services, whether it was me being an educator … why can't I do the same exact thing? We're in 2020; you have a translator, I know you have a translator. If you don't, you need to go ahead and increase your budget so you can hire five. You should have one for every single department. And even if you have one translator. Because we did have one translator at DSS; he probably was mad that he had to be the only translator, but I wanted to make sure that we understand. DSS, we're dealing with people's children. That’s serious.

Diversity training, that is key.

We want to make sure, like I said … accountability. We want to make sure there's pain management. We talked about how women are not diagnosed properly, because “we have a higher threshold.”

Lauren: That’s the thing. Among Black women, there's this misunderstanding that Black women have a higher tolerance for pain. Which comes from slavery, right? But literally, there's no scientific evidence of this. 

Lauren K: There is none! And it's crazy, because people keep saying it. Who told you that?

Lauren: This is the time we put that narrative to bed.

Lauren K: That narrative, we have to put that type of stuff to bed. I really wish I could remember the name of the survey that was done. The name of the survey was listed on the letter that we sent out from the Black Women’s Health Coalition for the hospitals. It stated that...

50% of the medical trainees that took the survey believed that Black women could deal with more pain. They believed that we have thicker skin; they believed that we have a higher threshold of pain. 

Lauren: You've literally taken basic anatomy classes. How could you possibly believe these falsehoods? 

Lauren K: I'm not in the medical field. But I can tell you, that's not true. I will say women that do have endometriosis, our threshold is naturally higher because we’ve dealt with pain so much. There has nothing to do with African-Americans. Just because I can deal with it doesn't mean I have to. If you have the means to help me or the resources, why wouldn't you? Why would you send me away in pain? So that goes back to another saying … because I'm an educator … it goes back to: How would you want your son or your daughter to be treated? How would you want your mother or your father to be treated? If I was a doctor, and I was in a hospital, and I saw that person in pain, more relief. Your values should override all of this other stuff that has, I guess, clouded your judgment to make you feel like the bias that you have is okay to do, or have, or say. It doesn't work out that way. So those are the four: accountability, education in the school system, pain management, diversity training. Because this is not going to go away. I'm going to push this as much as possible. I'm hoping that we have some recognition, because they haven't responded to any of the emails. 

Lauren: Oh, wow, that's really bad form. 

Lauren K: I haven't received anything. And that goes back to Black women being ignored. And when I get ignored personally … I'm trying to be patient.

Lauren: And the next step is listing those phone numbers for the rest of us! 

Lauren K: And I’m not trying to do that, because we're being nice!

Lauren: (laughs) But also, the time for being nice … that ended a long time ago, didn't it.

Lauren K: That's why we’re here now. I will list the whole directory for every single hospital. I don't care what department you call. Call them. You can call the administrative assistant. Get on her nerves to the point where she’s getting on her boss’s nerves. Till the point where that boss realizes, “Oh, we got a problem because they’re all calling.” People have nothing but time.

Lauren: That's another thing … the fighting is not over. You guys have started a branch of this fight that's so important. Those who tune into the show know how important women's health is as a cause to me and to the people who are on the show. This isn't just women's health; this is Black women's health. This is an area of health care that has been … really, people have been mistreated too long. And this is an opportunity to create change. And it's been organized by Black women, for anyone to help, in the fight. 

Lauren K: Right. And it's very organized for you to go through. And if anybody has any questions, we also have our email up.

And I do want to say that, yes, this is for African-American women, but we didn't forget about women of color either. That's the next step.

Once we get our answers … okay, don't forget Asian women, don't forget Native American women, don’t forget Hispanic women.

Lauren: What you're trying to do in terms of creating change, in terms of diversity and inclusion, it includes everyone. It’s like All Lives Matter versus Black Lives Matter. Right now, the focus is on Black patients, because they're experiencing some of the worst prejudice in the system. But it doesn't mean that these initiatives don't also include everyone else. Because if they were actually attended to properly, given the directives that you've given, then actually, the hospitals would be more inclusive of care for indigenous populations. For the Latinx population…

Lauren K: Right, because diversity training doesn't mean we only have conversations about Black people. Diversity is diversity. So we want you to include all of these things. And we know all lives do matter. That's the thing, we know that. But I don't think they matter if people are not being respected, if people are being ignored, if people are not getting the treatment that they deserve, if people are being turned away at hospitals, if you have Black women dying at a higher mortality rate when they're having children.

Lauren: Well, it's the idea that none of us matters until all of us matter. And that right now, the populations that are under attack are Black and brown populations, and that we have to focus on equality for those users of the health care system if we want everyone's care to be better.

Lauren K: Right. I just think that morally … because I go back to values and morals … what were you raised on? What would your mother want you to do?

Again, how would you want somebody to treat your child or your parent or your grandmother?

It goes back. Because at one point, I was 7. I am somebody's child. You may have children, and you will want somebody to treat your child with respect. And with the utmost care. And also, you signed an oath.

Lauren: Yeah, that’s a big one, isn't it? The doctors take the Hippocratic oath. So if you aren't actually providing comprehensive health care for all people equally, then there's something wrong with you.

Lauren K: Somebody may need to look back at the oath. I saw it. I read the oath. That's the thing. I read it. If I'm reading it, and I’m, like, “This is what you said. And you signed the oath. But it doesn't align with what you’re doing. I'm confused."

Lauren: And you're trying to fix it. Absolutely. So, I was wondering if you could give us some tips — Top Three Tips for someone who maybe suspects they've got something off? Maybe they're diagnosed with endo or a reproductive health disorder, some kind of invisible illness. What would your Top Three Tips be for someone who's in this Spoonie club with us?

Lauren K: My Top Three Tips … The first one is, if you are thinking that you have a disorder or you know that you have a disorder, your first thing is, you need to track; you need to track what you're doing. You need to track your pain; you need to track the medication you're taking. You need to track the foods that you're eating. You have to pay attention to it. And I know that it may be difficult. Sometimes I pull out my phone … if I've been in pain … okay, well, I’ll put these things in and let me track … ‘I had pain for this long. It was mild, on this day at this time. It lasted this long.’ And I have my notepad. But luckily … shameless plug … ENDO Black is coming out with an Endo Log. You can track your medication, you can track your appointments, you can track how your appointment went. You can track the foods that you've been eating; you can track your cycles, your periods … how heavy, you bled. We’ll also have some information in there about managing endo. So we will have this out, up and rolling. And I do want everybody to look into that. But it's important for you to track those things. The second thing is, be an advocate.

You need to be an advocate for yourself. Don't be scared.

At the end of the day, we are the customer, and the customer is always right. When you go to McDonald's, and your food is wrong, and you tell them, guess what they do? Well, at some McDonald's, they don't listen! Some McDonald's, they'll say, “I apologize, sir, we'll change your food.” "Ma’am, please let me take that. Can I get you another?” Chick-fil-A is a definite, good example of how service should be. So when I go to the hospital, and I tell you how I feel … I tell you, this medication made me feel this way … I tell you that I'm in pain. I'm paying for service. My insurance is paying for service. And it's not cheap. So if it's not cheap, you should be able to take the criticism that I have for you, because I am literally paying you to help me. Period. So I don't see a problem with being an advocate. So that's the number two step. The first one was tracking. The second one is advocating for yourself. The third one is research. You have to research. I cannot tell you what you can eat. I cannot tell you what activities you can do. I can't tell you the holistic approach to it. You have to do your own research. Everybody's body is different. What works for you may not work for me, and what works for her may not work for you. We are not the same. It doesn't matter if you're African-American, Hispanic, Latina, Asian, white … we don't have the same body. So you just have to do your research and understand how to move correctly, how to manage correctly for yourself. Because I can't eat wheat. Even though wheat is healthy. Wheat is supposed to be healthy for you. I can't do grains. I can't do wheat. They say vegetables are good. Well, edamame is a vegetable. That's soy, I can't do edamame. They say fruit is good for you. I can't eat grapefruit because I'm allergic because of endometriosis. So you have all of these different things. We talked about dairy; it makes me nauseous right before my cycle. So I can't eat it the week before my cycle. You have to just pay attention to certain things.

Lauren: It's about referring back to the notes you're taking on yourself, researching yourself as a subject. That research might not be available, too. We know that there's a huge gap in medical understanding, because we haven't researched populations beyond white males. So, if that research doesn't exist, you research yourself as an anecdotal piece of evidence there.

Lauren K: And how do you test and do research on endometriosis on a white male?

Lauren: Thank you.

Lauren K: So those are the Top Three Tips that I have for anybody that has a chronic illness, for anyone who thinks they have a chronic illness. Track everything, not just symptoms. Track every single thing that you have going on, advocate for yourself, and do research. It is imperative that you take on these responsibilities as soon as you feel that something is wrong. Don't wait. Don't gaslight yourself.

Don't allow anybody around you to gaslight you. We don't have time for that.

Life is short, and you have to make sure that whatever is going on with you, you can figure it out. Because after you start tracking things … like I said, it took me three months to figure it out … three is my number. I don't know why. And after a while, I was, like, okay, I got it. I know what to do. I know how to move now. I know how to do these things. I know how to accomplish these things now.

Lauren: I’ve got one more Top Three list for you. And this is one of my favorites. What three things in life give you unbridled joy? You’ve made these different lifestyle management changes to work around your symptoms, like not eating dairy the week before your period, things like that. But what are three things that you're completely unwilling to compromise on? So these can be guilty pleasures, secret indulgences, comfort activities, especially if you're having a flare. What are three things in your life that you turn to for happiness?

Lauren K: I don't even know if this is a good one. But I'm going to say food.

Lauren: No judgment. Food? We love it!

Lauren K: I know that we should not eat certain things. I have endometriosis. I’m the one who has to deal with the endo flare-ups. And that's going to be on me. But I'm going to eat ice cream and I’m going to eat peach cobbler. I'm going to eat desserts. I'm going to do certain things that I want to do because we still have to live and I still have to be happy. I still want to make sure that I have the joys of life. I think that is the biggest thing. A lot of people with chronic illness are just in this phase where they're so sad all the time.

Lauren: There is no joy.

Lauren K: A lot of the support groups that we were in, it was like dragging. Oh my God. I want to laugh. I need you to relax, relax just a little bit. So that is one of the things. Food. I will always love food; tacos is a definite. Let’s see … being around friends and family. My relationships with my friends and family, as much as they may get on my nerves, I love them deeply. I enjoy everything about it. Even though I can't hang around them as much as I want to sometimes, depending on my endometriosis flare-ups. But I think having that communication and those boundaries and talking and expressing yourself, they kind of understand. You do have some friends who are, like, “Oh, come on. You can't go out with me?” “No, girl, I can’t. Not today, I don't feel well.” "Well, when are you going to feel well? Take some ibuprofen.” Leave me alone. Leave me alone. And then, my sleep. I love sleep. I know that it may sound simple, but when you're in pain, sometimes you really don't sleep. Right now during the pandemic, a lot of people aren't sleeping. I do appreciate the opportunity to take time to go to sleep, to relax, to rest my body, to get rejuvenated and hibernate and things of that nature. And then feel refreshed when I wake up. So those are the Top Three Things for me.

Lauren: Beautiful. What is your ask for listeners today? What can people who are tuning into this episode do to support you and your community in the work you're doing?

Lauren K: My thing is, if you see something, say something. I always use that. I don't want people to message people and ask them what can they do? And how do I do this … and do two extra things. I want you to message people and say, “How are you feeling today?” I want you to listen. I don't want you to listen to respond. I don't want you to listen to attack. I don't want you to tell somebody that their opinions are not valid — because you don't feel like it's a valid opinion. If a tree falls in the forest, and nobody's around, does it make a sound? Yes, it does. You just didn't hear it. That doesn't mean it's not real. That doesn't mean it's not there.

So we have to get out of the habit of telling people that what people feel is not what they feel.

And it's really, really interesting because I had a moment … we just recently started pushing the Black Women's Health Coalition … and this lady, she told me that what I was on was a political issue. I was like, oh, okay, well, I know where this is going real quick. 

Lauren: Let me guess … she was a white lady.

Lauren K: Yeah. 

Lauren: White women, we need to do better!

Lauren K: (laughs) As you clap your hands! 

Lauren: Yeah, as I clap my hands, I'm like, come on white ladies, we can do better than this! 

Lauren K: Yes. She also told me that I allowed the media to tell me about my own experience. I don't understand. 

Lauren: Ah, that's all gaslighting is what that all is.

Lauren K: Exactly. She also said, “Where were you two weeks ago before all this stuff happened?” 

Lauren: I was busy being a Black woman using the healthcare system. Thank you.

Lauren K: I’ve been here! I never thought I would tell anybody this. I might make a shirt out of this: “Google it”. Cuz I've been here. We've been doing this type of stuff. Just because you're just seeing it, doesn't mean anything. And these organizations that have been supporting us have been supporting us. I don't know why you just popped up though. I don't know why you just saw the post. A lot of organizations have been supporting us. So it was really, really interesting, and it was hurtful. But what I did was … and I don't do this very often … I invited her to my space. I said, “Come. Listen, mocktails and cocktails are going on tonight. I want you to hear African-American women and women of color talk about their struggles in the healthcare industry. I want you to get on the conversation and listen to this.”

Lauren: You opened the door for someone who didn't know more, and offered an opportunity. No, she's chicken but okay.

Lauren K: Right. Because to be honest with you, I was asking people for donations for the event to take place. And I sent her the link, I sent her the password.  I sent her the meeting ID. Come on girl, seven o'clock. 

Lauren: You gave her every reason to engage.

Lauren K: She still has not even opened it. She probably didn't even know, but I tagged her in it. And I told her I was sending her the information and check-in IDs. 

Lauren: Good for you.

Lauren K: I created a space for you to come. The thing is, I create a space for African-American women and women of color to vocalize how they feel. But I just opened the door for you to come in. Now if she had gotten disrespectful, I definitely would have removed her. And I gave the woman on the call updates and the heads-up … “You may have somebody on the call tonight … ” But I wanted to give her an opportunity to know; I opened up the floor for her. It’s the difference from crying wolf. And it's one person. But if it's 15 people, if it’s 35 people, if it's hundreds of people that are saying the same thing, there's a problem. It's just like the school system. If somebody in your class … I remember verbatim … I was in college., and I still love this professor to this day … but she failed the entire class. There were 14 of us. It was my senior research class for Communications. She failed the entire class. And this was the only time we could take this class because one was fall, one was spring. It was senior research 303, and the other one was 304. And the whole class failed. And if the whole class failed, well baby, you’re going to have to teach this again. Because it's clearly not on us. It wasn't on us, because somebody missed the bar somewhere. And I worked hard in that class. Wow, I worked twice as hard when I took it. Because we ended ups taking class 303 and 304 back to back. We just stayed in the classroom the whole time, the same 14 people. I attended an historically Black college, university, Morgan State University. And they listened to what we said. Our instructor, she was Jewish, but I still love her. I still love her to this day, because she opened our eyes to a lot of different things as well. But I try to use analogies for people to understand. I’m not making stuff up. The struggles that I feel are real. The statistics do not lie.

There are more African-American women dying during childbirth than any other ethnicity.

Lauren: They’re shocking statistics. 

Lauren K: And I'm sure it's happened more often, unfortunately … this week, a Black woman died. Last week, a Black woman died; the week before a Black woman died. And there's articles coming out about it. There was a woman that specified to her mom; she said, “I don't think I'm gonna make it out of childbirth alive.” She said that to her mother. She didn't make it. And her mother knew. And now a child grows up without a mother. And now we have a whole different situation going on. And that could have been avoided.

Lauren: Wow. What is next in your advocacy and your wellness journey as we wrap this up? What's next for ENDO Black? I know you're gonna be launching The V Dot. With April Christina and Samantha Denäe. So that's a podcast for everyone to look out for. But what's next as you continue to grow? I mean, you've been talking about the continued growth of the Black Women's Health Coalition. What about ENDO Black? What about your own personal wellness? What's next on the table for you?

Lauren K: So, right now we are pushing some things. We are going to start our info newsletter back up. So look out for that. We have our ENDO Black cookbook, which is a cookbook that will be compiled of recipes for African-American people, and anybody that wants to share. As everybody knows, we do have soul food. And our soul food is not the healthiest; it does have high cholesterol. And you know that can kind of hinder us a little bit in our health field. So we're trying to make food healthier, but still taste good. Because as we know, there is some food that is healthy, that is not good. That's a lot of the reason why a lot of African-American people don't want to do vegan because they don't like that. So we will have our ENDO Black cookbook out; we will have our ENDO log out. We are also doing our league; it will be compiled of partners that have businesses, and we will be connecting with them. People that are interested in getting some of these discounts or calls, getting some of the information, they will have to subscribe to our info newsletter. We also have our partners’ club where we'll be working with other organizations who are in the medical field or who are solely focused on endometriosis. So those are some of the things that we are doing. Of course, our ambassadors’ program is going to continue to grow. We’re doing that, we're not going to stop that at all. We have some other things in store. I don't want to share too much because I want to make sure they happen in a good timely matter. And I don't want to put too much out there. But those are some of the things. I'm really, really excited.

Lauren: Tons of growth ahead. Can you tell everyone where they can find you and all of your various projects on the worldwide webs?

Lauren K: You can find me on Instagram. My personal is @IAmLaurenRenee. You can find me at ENDO Black; that’s @endo_black and that is our nonprofit page. You can check out ENDOblack.org. You can also check us out on Black Women with Endo — that is our public page on Facebook. And you have African-American Women with Endometriosis, which is our private page where we allow a woman to come to have intimate conversations and stories to figure things out. You can also see check us out; we are doing YouTube now. We do have a page; you can find us at ENDO Black. We only have one thing up there as of right now, but we are looking to do some more in the next couple of months. And Twitter, @TheENDO_black, I believe.

Lauren: Perfect. And I will also link to everything that you've just mentioned on the webpage for this episode. So if you're clicking through and listening on the UnInvisiblePod website, you'll be able to access all those links on the episode page. Lauren, is there anything else you'd like to share with us before I release you into cocktail hour today?

Lauren K: Because it’s happy hour everywhere! (laughs) But I just want to say thank you for this opportunity. I really appreciated it. Sharing your platform with me, it really allows me to share so much information, to have these educated conversations, and to create constant dialogue around awareness for African-American women and women of color to create a dialogue around women's reproductive health. And to create a dialogue around systematic racism. I know this is something you've been doing. So I appreciate you. You didn't just start this and I think it's very, very genuine. Because I'm telling you, over the last month, it has been quite difficult, because you have so many people reaching out. I'm very, very appreciative of it. However, it has been a lot, to the point where we have to take a step back and take a moment. A lot of times people forget that I was born Black; this isn't something new for me. We've been dealing with this a lot. And a lot of people think that we’re just about to pick up and change, and hit the ground running. Well, it doesn't work that way and it cannot move that fast. If anything moves that fast, it's never that good and it's not genuine.

So we need to take our time with this. We need to make sure that the conversations continue.

We need to make sure that we're still having educated dialogues about all of these things. And we need to make sure that we are really making a difference. And making sure we're sharing the platform. We have so many ENDOBlack ambassadors; you have so many African-American advocates for endometriosis. You have so many women that want to make a difference, want to make a change. So many different people that are using that platform for different things. We even have an ENDOBlack ambassador who does reviews on products for hair. It's simple things like that, because they’re, like, “What is a really good product for my hair?” And it's really important for us to look at these things. And again, it's not just about Black women, it's about all of us as a whole, and making sure that we can be inclusive. And to be honest with you, we even have to make sure that we're sharing the platform with the transgender community as well. So we need to get to a place where we are being open, and we are communicating and we are educating people constantly.

Lauren: Well, we've learned that on this show, speaking of the trans community … we've learned from previous episodes of this show that you don't have to identify as female to have a uterus. So if you've got a uterus, you can have endo. But you can also not have a uterus and have endo. Because a lot of women get hysterectomies. And we know that that's not necessarily an effective treatment. 

Lauren K: It is one of the most recommended treatments besides birth control for African-American women. But that's neither here nor there. 

Lauren: Well, we’ll end it on this note, that that is further proof that systemically, Black women are being pushed toward not reproducing. That this is all about underlining our history as a slave-owning nation. 

Lauren K: I’m cheering you on right now, because you are hitting it!

Lauren:  But it's true. And you know, when we had Samantha on the show, she was talking about birth control as a form of population control. And I think this is absolutely right. If this is what we're pawning off on people, and we're finding that these treatments aren't necessarily effective.

Lauren K: Yeah, it's not helping anybody. It's about control. It's about money. It's about corporations. The health care system is a corporation. America is a corporation. We sign contracts. That's why we do certain things. That's why we just sign stuff. Anytime you go in, you sign. Any time we have a surgery, we sign. Before we become a patient, we’re signing stuff. Yes, it’s a safety net a little bit. But you're doing it and you don't even know if this is gonna help me. And guess who won't get paid off of it?

Lauren: It’s not your safety net. It's the hospital’s safety net. It's the doctors’. And your safety net right now is in information and in community. And that's what we're hoping to continue to bring to you. So Lauren, it has been such an honor having you on the show. I know you're tired. And I thank you, especially because of this last month since George Floyd's murder. And since the protests have begun. I'm extremely honored that you took the time to talk to me today.

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