Atlanta native Samantha Denäe is a former magazine writer and entertainment blogger-turned novelist, poet, and screenwriter. At the age of 24, she was diagnosed with endometriosis – and turned this devastating revelation into a gift, making it her mission to educate women around the world through partnerships with the Endometriosis Foundation of America and The ENPOWR Project’s Endo Edukit, among others. An outspoken advocate for women living with endometriosis, she bares all in educational workshops and social media posts. While holistic approaches have helped her begin to control her symptoms, she presents a unique take on the nature of women’s pain – and whether or not we were born to suffer.
Tune in as Samantha shares…
- that she has lived with pain and nausea since she was 12 years old
- that she was initially brushed off and offered ibuprofen for her pain and long, heavy menstrual cycles
- that she was diagnosed in 2014, and first heard the term “endometriosis” weeks before graduating from college – after a near-codeine-overdose (and not being educated on narcotics by the doctor who prescribed them)
- that she was given the firm diagnosis of endometriosis when she had cysts removed
- that within 3-4 years, she went from stage 1 to stage 4 endo
- that she experiences bladder difficulties because of the growth of endometrium and scar tissue – mainly urgency – but that she still needs excision surgery
- that endometriosis spreads like a cancer, and is also the precursor to ovarian cancer if left untreated
- the misconception that full hysterectomy or pregnancy can reduce/remove symptoms – and that these options are not fail-safe
- that for years, she tried to convince herself that her pain was manageable
- that she deals with pain and fatigue regularly, in relation to her cycle
- that negative self-talk produces negative reactions in the body – and she’s learned to shift her anger at her body into love and acceptance
- that she’s come to the realization that she lives with endo for a reason – to be an advocate for others
- that she experienced depression in the early stages of her diagnosis and treatment – and that she continues to experience anxiety around every menstrual cycle
- the effect that endo has on female fertility
- that she has tried many methods of birth control, and none regulated her period and endo symptoms – most gave her 90-day cycles
- that giving up birth control, yoni steams, meditation, and diet change have been the most useful methods of symptom regulation for her
- that she’s wary of hormones in food – particularly in meat and dairy – and has removed chicken and dairy from her diet accordingly
- that endometriosis has had an adverse effect on her romantic relationships – in that her fertility is effected, and that sex can often be painful
- that women with endometriosis have their own shock to deal with before handling a partner in the picture – and that healing from trauma is ongoing work
- the importance of connecting spiritually with a partner before jumping to sex – especially when you have to make physical adjustments because of a medical condition
- that her mother was the most difficult person to explain her endo to – and was against her first surgery until her doctor sat her down and explained it all to her
- that at one stage she was given chemo treatment for her endo, which put her into early menopause
- that she really connected to the community through social media, and that this connection has truly aided in her healing
- that through social media, she connected to other women of color living with endometriosis – and that this was particularly poignant because it’s not a condition often discussed in her community
- that children aren’t learning enough about reproductive health in school – including menstrual cycles and more complex conditions
- that the focus of her advocacy is in educating kids
- the misconception that endometriosis doesn’t occur among black women
- the lack of information and research on endometriosis among black women
- the total misconception that African American women can stand higher levels of pain
- the high suicide rate associated with endometriosis
- her opinion that birth control is a form of general population control – and was invented in order to stop black women from reproducing
- the connection between birth control use and rising infertility rates in the US
- her favorite green smoothie recipe
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Lauren: Okay, guys, thank you so much for joining us. I am here today with Samantha Denäe, who is also known as The Endo Educator for those of you who follow her on Instagram and other social media platforms. She is an educator, a writer, and is also living with endometriosis and working as an advocate for women's health and reproductive health. So, Samantha, thank you so much for joining us.
Samantha: Thank you for having me. I'm excited to be here.
Lauren: Oh, such a pleasure. So let's start from the very beginning. We like to start with the basics here. Can you tell us when and how you first realized that you were sick?
Samantha: Well, my cycle had always been bad. I started my cycle at 12, and it started off as seven days — super heavy, a lot of blood clots. Then that eventually turned to eight days. And as I got older, I got sicker. And every time I would have my cycle, I couldn't eat for the first five days; I would throw up. I couldn't drink any water; I would throw it up. I'd have to miss school, miss work, miss life, everything.
And one day, I had my cycle and I couldn't walk.
That was the first time that I had ever not been able to walk. I would have joint pain in my legs and everything, but it would still be okay enough. But this one particular day, I completely collapsed. And I went to the emergency room to try and figure out what was going on, and they swore that I was pregnant.
Lauren: Oh. A likely story, right?! It's always our fault! (laughs)
Samantha: And I kept telling the nurse. “It’s my period. My period is always like this, every month. This is the first time that I never been able to walk on my period.” And so they made me take the test, of course, to see if I was pregnant — and it came back negative. And sent me on my merry way with my $100 copay and my prescription for ibuprofen — that does not do anything for me.
Lauren: Gee, thanks for nothing.
Samantha: Exactly. It was ridiculous.
Lauren: And this is a very common story, isn't it. “First of all, let's make sure you're not pregnant.” Fair enough. We need to test for these things before we give you certain medications. But that the onus is on you … the onus is on us as women … that it's somehow our fault that our bodies are malfunctioning.
Samantha: And it's in our head.
Lauren: That’s the most offensive thing, isn't it.
Samantha: It is.
Lauren: And it seems that it's a sort of a dinosaur way of thinking, that I hope is dying out. But it's left over from centuries ago when women were called hysterics and nobody really cared to understand. Now they're beginning to, but not everyone is.
Samantha: Not everyone is.
Lauren: So when were you actually diagnosed with endometriosis?
Samantha: I was diagnosed in 2014. I had just finished graduating college.
Six weeks before I graduated college was when I heard the word “endometriosis”, and that was after a codeine near-overdose.
Lauren: Oh, wow. And that wasn't for fun. That was literally because of pain?
Samantha: Yeah, it was for my period; I was taking codeine for my period pain. I wasn't well educated in narcotics. I was used to taking 1600, 1800 milligrams of medicine, and being fine. So I took 36 milligrams of codeine, thinking that it was nothing.
Lauren: Don't blame you.
Samantha: And I woke up the next day, out of it. Dizzy. I could barely hold it together. And so I went back to the doctor who had prescribed the codeine pills, and saw someone else who was there at the office — because the doctor who had prescribed the pills wasn't there. And he was the one who asked me if I had painful periods, if I had any issues with going to the bathroom, or if sex was painful. And the answer to all of those questions was yes. He said, “ I think you have endometriosis.” He gave me a pamphlet on it. He told me you can't be diagnosed through MRI or CAT scan; you have to have a surgery in order to be diagnosed. And at the time, I didn't want to miss finals and miss walking across stage, so I said, “Okay, I'll wait." And when I graduated and returned home from school, I went and saw my doctor. And she found that I had two ovarian cysts that were both the same size as my uterus.
Lauren: Oh, my goodness! That’s not just a cyst. How were you walking around with that?
Samantha: Yeah. And she said my uterus was the size of an orange, when it should be the size of the lemon — because I've never been pregnant or had kids. Because I had to get the cysts removed — they were about to rupture — I told her about the endometriosis. And when I had surgery, that's when they found it.
Lauren: Wow. So you've had the cysts removed. And have they been able to remove the endometrium as well from your uterus?
When I had my first laparoscopic procedure, I was Stage 1 endometriosis. Three to four years later, I went to Stage 4.
And so when I had my second laparoscopic procedure, she was able to remove the adhesions that had grown, but not everything. I have a lot of scarring near my bladder, so it makes it hard for me to go to the bathroom or hold my urine. She wasn't able to remove that; for that I need excision surgery whenever I can afford it.
Lauren: Well yeah, and that's part of the issue here isn't it, as well … that a lot of these surgeries are considered elective. And so the coverage for them is often not enough. Maybe you could also give us a little background for people who are tuning in and going, ‘Endometriosis? I think I know what it is, but I'm not totally sure.’ Can you tell our listeners a little bit about what endometriosis is?
Samantha: So, endometriosis is basically a reproductive condition where the lining of your uterine tissue will shed on the inside of your body, versus the outside. When a woman who doesn't have endometriosis has her cycle, all of that will shed out of her body. But for me, some of it will shed, and then some of it will stay left behind. And then the tissue that gets left behind is like a growth. It's like the roots of a tree; it's all they need to be able to start growing. And it can grow to any part of your body, any organ — on your lungs, your brain, your bladder, your colon, anywhere. It will spread like a cancer. They don't call it cancer, but it is the precursor to ovarian cancer — especially if you don’t find out that you have endometriosis.
Lauren: Right. And if you don't treat it, as it were.
Samantha: If you don’t treat it.
Lauren: So with you, it was already pretty far advanced by the time you were actually diagnosed. This seems to be a pretty common story, too, right?
Samantha: It is.
Lauren: Either we're in denial of our pain, or we don't have access to information growing up, that might allow us to understand that perhaps our cycles … if people are having painful cycles or pain during sex and things like that, that that's not normal. Right? And that if you're having things like that, you absolutely need to get checked out. And the sooner the better, right?
Samantha: Exactly. That's what I advocate for. Being able to pinpoint the symptoms, being able to advocate for yourself when you're going to your doctor … so that when you go and you say, “I have these issues,” they don’t do what doctors did to me … when I would go to different doctors and complain about my period pain, they would always say, “It'll get easier as you get older, or when you have kids.”
Lauren: Oh, they always say that, don't they?!
Samantha: Yes, they do.
Lauren: And that's not necessarily true. And also, why should I have to have a kid to make it better?
Samantha: And at that time when I was getting those types of answers, I was in my late teens, early 20s.
And I'm thinking, babies? I'm not gonna have kids till I’m in my 30s. Ten years I have to go through all of these things?
Lauren: That's unnecessary.
Samantha: That’s all you’re going to give me?
Lauren: Well, that's all that a lot of doctors will give. And even though doctors seem to be educated when it comes to endometriosis, it's kind of like the zebra, right? It's not the thing that they're looking for first.
Samantha: It never is. They look for everything else before they start really looking into other issues.
Lauren: Absolutely. Well, and also because endometriosis requires laparoscopic surgery in order to be determined. And that in itself is invasive enough. A lot of people are ‘happy’ enough saying, “I have endometriosis,” or endometrial symptoms, right? They know pretty much they have it, but they’re, like, I don't need to get poked around — unless I'm getting things removed.
Lauren: So you mentioned how you teach people to advocate. Did you ever need a personal advocate at any point in your journey, to help figure all of this out?
Samantha: I did, but I didn't have one.
Lauren: Also a very common story. So you learned to become your own advocate?
Samantha: Yes. I could have used anybody, especially in high school. And college as well. Because when my period comes, I get very narcoleptic. I'm very hard for me to stay awake when my period is getting ready to come. So I would go to class, and I could stay awake long enough to say that I'm here. But after that, I'm going to sleep and I can't help it. I can't stop it; I'm just gonna go to sleep. I wish I would have had an advocate back when I was in high school to come in and teach about these types of things. Maybe, at least I would have had an idea that it wasn't just me. I thought it was in my head for the longest time.
I would always tell myself, the pain isn't that bad. It's not that bad. You are just exaggerating. But I really wasn't.
Lauren: And how does that affect your relationship to your body as a woman who’s coming into her own, too. And discovering your body. Does it give you sort of a dysfunctional relationship to your body and your reproductive system?
Samantha: It does, because a lot of people don't realize that our body listens to us when we're speaking. And so when we speak negatively about or to our bodies, they don't react positively to that. So I've come to learn that my body really needs to know that I'm not mad at it for being the way that it is.
Lauren: That’s got to have been a process to go through.
Samantha: Yes, because when you're diagnosed with something like this, the first thing you ask is: Why? Why did I have to be diagnosed with something like this? Something that doesn't have a cure? I have to have a period. It’s not that I can stop having a period that will make it go away. So that's the first question you ask.
Then, for me personally, I had to realize that I have endometriosis for a reason.
It’s not like I just said, all right, it’s just gonna mess up your reproductive organs and that's it. I was given endometriosis — which nobody talks about and nobody really knows that much about it, for a reason — and that was to be an advocate. So I had to let go of kind of the depressive state that I was in when I first found out about it … I just had to let that go in order to understand that the purpose is different. And it's bigger than just me having endometriosis and bad periods.
Lauren: Yes, absolutely. And I'm sure you've also found community the more you've talked about it and are advocating.
Samantha: I have. Through Facebook and through Instagram and Twitter, I find a lot of women who suffer and who go through the same thing. But they don't have anybody to talk to. So I offer myself to be the person that they can vent to. Because you can vent to your friends, but when they don't go through it, they don't really know or understand.
Lauren: Absolutely true. And in terms of creating this community and finding these other women, are you finding that the stories are all very similar, too — in terms of the way that they were diagnosed, the way they’ve related to their bodies?
A lot of women don't get diagnosed until … I don't want to say, until it’s too late.
But it's too late if you want to have children … at the time you find out that you have endometriosis, the scarring has already done the damage, and trying to have a baby is kind of out. Unless you want to do IVF or a surrogate. But trying to do it on your own? That kind of just gets ruled out.
Lauren: So in terms of the mental health aspect of this, were you able to get access to treatment? Was that something that you sought as part of getting better?
Samantha: Not for my mental state. I do need to, though. I've been told by my aunt … she’s a mental health advocate and she works with mental health patients. She tells me all the time, “You need to go see somebody and talk to somebody.” But I do meditate a lot. So that's been really helping me move past my fertility issues and everything. So that helps. But I do think that having a condition like this really does puts a strain on your mental health. I have a lot of anxiety around my period, especially when I know it's getting time for it to come. I get a lot of anxiety. And we don't talk about the mental trauma that we go through with our period. And how that affects us.
Lauren: It's a form of PTSD that you're living with, surely.
Samantha: It is. They don't like to think of it that way. Just because it's your period and your period comes once a month.
Lauren: Do you think it's also because the medical industry has for so long been dominated by males?
Samantha: I do.
Lauren: And also white males? We're looking at a system where the studies are always leaning that way. So why would you study endometriosis or a reproductive health issue at all?
Samantha: We don't have those organs.
Lauren: Absolutely. So why don't you tell us what a typical day is like for you as you're navigating symptoms around your period? What are you doing now, because you’ve started using holistic methods to control your symptoms, haven't you. And they've worked really well for you.
Samantha: Yeah, they work fairly well. I tried a plethora of birth controls that did not work, that caused my periods to be 90 days at a time. And so after having 90-day periods, for most of the year for five years, I finally decided I was going to get off birth control. But I was very skeptical at first. Because my period, before I was diagnosed, was 10 times worse than after my diagnosis with the birth control and everything. And so, for a while I just wanted to still keep the 90-day periods — even though they were bad, and I had faint spells and I would get sick and nauseous all the time. It was still better than my period not on birth control.
My body just kept telling me, it's time, it’s time, the birth control is not working.
Nothing’s working. Nobody has any answers on why your period is lasting so long. So my body was, like, it's time. And I got off birth control and I started doing all these steeps. You take herbs and you steep them in boiling water.
Lauren: And these are herbs that you've actually procured from an herbalist.
Samantha: Yes. And you put them in a toilet; you can use your personal toilet at home, or you can use a pot … and you put the contents in and just let allow it to stay in your reproductive organs. And you'll be surprised the things that you will see or feel, discharge wise, that will be coming out of your body.
Because we don’t really look or pay attention to what we put into our bodies. And that has a really big effect on our periods.
So giving up birth control, meditating. I’ve changed my diet so I no longer do processed foods or red meat. No turkey, no dairy; dairy and chicken are the worst for me and my period. I had to cut that out because of the hormones that they inject into the food, and I already produce too many hormones, so I don't need any extra hormones added to my body.
Lauren: That’s a real problem, isn't it, with the food that we eat, because that's making us sick aside from keeping us sick.
Samantha: Exactly. So, changing my diet and changing the birth control method to no birth control has really helped. The steaming has really helped with my flow. It's not as heavy as it used to be. I don't use as many pads as I used to, because I would go through a 40-pack of pads in a week. I don't have to go through as many, and I use organic sanitary products as well. And that's been helping with my period pain, too. A lot of people don't associate pads and tampons with period pain and cramping, and they don't understand that chemicals that are in the tampons and the pads have an effect on how much you cramp during your period.
Lauren: It’s all stuff that we're putting on or in our bodies that can affect it. You also mentioned difficulties with your bladder and with sex as well, painful sex. How are you navigating those worlds? Are you just sort of mindful of when you need to go, you need to go. And making sure you have a partner who understands?
Samantha: Well, with my bladder, whenever I feel the urge to go, I have to go right then. There's no holding it for me. Otherwise, I'm going to have an accident. I’ve had some accidents because I couldn't get to the bathroom in time. So I'm looking into more herbal ways to treat my bladder. My doctor, she just gave me some medication to help with the urgent consistency I'm feeling. So then when I do feel like I need to go to the bathroom, I don't have to go right then; I can just hold it for a few minutes and make it to the bathroom. I'm going to need an excision surgery to remove all that scarring, because that's why I can't hold my urine anymore. But with relationships, when I was diagnosed with endometriosis, I was in a relationship, and I tried to give him an out — because I didn't know what was going to happen with my fertility. And he was, like, “No, it's okay. It's fine. We can work it out. We can figure it out when that time comes." So I was, like, “Okay.” And then a year later, I asked the question again, and he said, “Well, we'll cross that bridge when we get to it." But he had been saying for months that he wanted to have a child by 27, and we were 26. He wanted to get married and I was just, like, I'm gonna have this baby with this man next year. I'm not even there yet!
He didn't understand how endometriosis affected the body, how it affected me sexually.
He didn't understand that the chemo treatment that I was taking for my endometriosis was putting me in some in menopause basically and I didn't have a sex drive — and he always wanted to have sex. It wasn't working, and he wasn't getting it. And I think that a lot of people who have endometriosis and are in relationships … I see a lot of women, not complaining, but they're always talking about how their significant other isn't
as understanding or as patient with them with the condition. Because I don't think that they know much about it. I also think that it's because, we women who have endometriosis … we haven't completely healed from the shock of having it. We don't understand or take the time to try and figure out what works for our body so that we can have pleasant sexual experiences. Because I've had painful sex for the majority of my life, and I didn't know at first it was the endometriosis.
Lauren: Everyone tells you, the first few times it’s gonna hurt. Really? Like, why am I being told that?
Samantha: I didn't know that it was because of a condition. So then when I found out that it was, I had to refigure out, sexually, how I could make it work for me. At 25, I didn't have a sex drive and I couldn’t have cared less if I never had sex again for the rest of my life. At 25, you're supposed to be having some of the best sex of your life.
Lauren: That’s what I hear! (laughs)
Samantha: They say we hit our sexual peak at 40. At least in my 20s, I should be having good sex — and I just wasn’t. You also have to realize who is good for your body — because not everybody and their energy is good for your body, and you shouldn't engage or have sexual activity with them. I've learned that my ex was not good for my body. The sex was not good, and every time we would have sex I would bleed. And I wouldn't be on my period beforehand. And all that energy of him not being able to understand and wanting to get what he wanted all the time, my body could feel that and that is how she would react — she would just bleed.
So, it's very tough to be in a relationship where you have a reproductive condition that really affects your sex drive.
Lauren: And your mental state, too, around sex.
Samantha: Exactly. And so I think it's important to really, really be able to connect with someone spiritually before you take it to sex. Because that'll have an effect on how well your sex life is going to be with endometriosis.
Lauren: Yeah, I think that's really good advice. It’s probably good advice in general when it comes to sex, isn't it. So we know that you've had trouble relating to partners, trying to get them to understand what's going on in your body. You've struggled with doctors who don't understand the condition or
certainly don't understand how to talk to patients about it. Have you been in situations where you've had to justify that this illness existed to people who were in denial of the fact that it was happening? Perhaps even yourself?
Samantha: Myself? Yes, for a while. Well, it wasn't even the condition. It was just the fact that my period wasn't normal. So I had to convince myself that … no, something is really wrong … this is not how it's supposed to go. So I had to do that.
But I think the biggest person that I had to really sit down and explain it so that they could get it, was my mom.
My mom had bad periods when she was growing up, and she would always tell me, “I had bad periods, and you have bad periods, and that's just how it goes.” So when I got ready to have my first surgery, she was against it. My mom is against surgery, period.
Lauren: I don't blame her, because that’s something that's very invasive.
Samantha: Yeah. She was against it. To her, I just had a bad period. That was it. She didn't understand. And then once I was diagnosed, she still didn’t really get it. When I would be changing birth control, she would always ask, “Why do you keep changing birth control?” She didn't understand it until last year when I had my second surgery, and my doctor had to explain to her what happened during surgery so that she could explain it to me. During my surgery, my doctor found that my tubes are completely blocked from the endometriosis tissue. So naturally, I won't be able to conceive. So she had to really explain that to her and explain the whys of the conditions, and why I'm on birth control. Why do I have to miss work pretty often because of my period? Why was my period 90 days, and always on? She didn't understand it until my doctor really sat her down and broke it down for her.
Lauren: That’s really great that your doctor did that.
Samantha: And I cried because I'd tried on multiple occasions — and she still didn't get it.
Lauren: Sometimes you just need the medical authority.
Samantha: Which I don't fault her for, because if you don't have it, you don't know. So it's okay. I had to really, really explain it to her. But outside of that, for the most part, everybody usually comes to me and says, “I met somebody else who has endometriosis. But you're the first person that I know who has it. So can I just send them to you? Can you talk to them, because I don't know what to tell them.” That's what I usually get.
Lauren: That's really interesting. It's amazing to me … we know that you're using meditation and various holistic practices to be in a good place with all of this. But at such a young age. to be told that your fertility is compromised, to know that you're dealing with the pain you're dealing with, to even be on chemo.
You mentioned earlier that you were on a chemo treatment, which is such an extreme treatment — although this is also an extreme illness. How did you find information? Because you're the advocate, you're the one that people are going to? How did you find the information that you needed to become who you are at this point? Was it a series of doctors and speaking to professionals? Was it being on the Internet and connecting to community?
Samantha: It was a little of both. When I was diagnosed … for maybe the first six months, I didn't have anybody else that I knew who had endometriosis. So I would call my doctor all the time. And I had her personal number, because I worked for the company that my doctor worked for. So I had her personal information, and I would just text her all the time and ask her questions. I know I probably got on her nerves! I didn't have anything else outside of that for a while. And then, I think one day I was bored or something, I don't know … but I found a group on Facebook. Women who had endometriosis. So I joined. And once I joined and started reading other people's stories, I was, like, okay, I'm not the only one so that's good.
A lot of other people's stories that I've read are way more extreme than mine; I don't even understand.
People look at me and ask me how am I still here. With these stories I hear, I want to know, how are they still here? Because it's scary the things that they go through. Having to quit their jobs and be on bedrest. I don't think I could ever … even if my body did say, this is what you need to do, I don't think I could ever do that. So Facebook really was how I started to find people, and Googling different things about endometriosis, trying to learn as much as I can. Because I didn't know anything about it at first. But really, reading other people's stories and asking each other questions is really how I started to learn about endometriosis, and all of the effects and all of the different ways that it could really plague your life. A year after I found a Facebook group … and I found maybe three more … and then with Instagram, that's when I really started to project my condition and really talk about it. And through Instagram, that’s how people found me.
Lauren: That’s how I found you! I mean, it's really interesting because sometimes I'm having this conversation with guests on the show and saying, “In a way, this is the best time to be sick, because of access to communities through the Internet. But in other ways, it's still terrible because we're still women in the system.” But it's enabled you to get your message out to more people because of social media. So why don't you tell us a bit about the advocacy work that you do, and how you came up with this name, The Endo Educator, which I love. And how that all came to life as part of your healing journey.
Samantha: Well, I don't know where The Endo Educator came from. I think I was just brainstorming, thinking about all the things that I wanted to do around endo.
And I had already been posting different little things for people to look at — who have endo — and it just came out of nowhere. That's where the name came from, just out of nowhere. And it flowed, so I left it! But being on Instagram, and using Instagram as my advocacy has really, really helped a lot.
It helps me find women who are African-American who have endometriosis, because in my community, we don't talk about it.
And so once I started to build a bit of a platform on Instagram is when I started to really take my advocacy seriously. I remember one day I was scrolling on Instagram, and I saw that the national Endometriosis Foundation was looking for educators, to go to different schools in your state to talk about endometriosis. And I thought, I’ll look into this. You didn't need any credentials, teaching credentials or anything like that. All you had to do was sign up to volunteer. And the first school that I taught was my alma mater. I went to my high school and taught a class about endometriosis. And after I did that one class, I was, like, okay, this is what I want to do. I want to go to the high schools and I want to teach the kids about endometriosis. From there, it went from teaching about endometriosis, to teaching about endometriosis and how to advocate for yourself when you go to the doctor, how to take care of yourself when you're on your period … what is your period biologically, because these children do not know. Then I went to ob/gyn talking, Pap smear talking, because they don't know what that is either. I found that a lot of children are just lost; they don't know anything. And it's ridiculous because the school system won't teach you the basics of your period. They won’t tell you … when you have your period, now is when you can get pregnant. Or that biologically, your period is the lining of your uterus and it's just dead eggs and tissue that just need to be detoxed from your body. They don't know that if you have vaginal discharge, if it does not smell that's normal. But if it does have a smell, that’s not normal. They don't have health insurance. They don't know a lot of things. So, once I started to go into the school system, that was when I really had the idea of … okay, it’s more than just going on Instagram and making posts about my endometriosis. I didn't want my advocacy to be Instagram. A lot of people go on Instagram and talk about endometriosis and different topics, but they only use Instagram or other social media platforms. I didn't want to be one of those advocates that only uses social media, and then that was it. And so I was, like, okay, I'm gonna start going to schools and volunteering and teaching the students about endometriosis. And when I go to the schools, I always give them my Instagram information; they can feel free to DM me about questions that they may not want to ask in front of the other students, about their cycles. Students come to me and tell me they haven't had cycles for eight months and that their doctors are telling them that is normal, for them not to have cycles for a few months — and it's not. And they don't understand why. So outside of going to the high schools to teach, I go to churches, youth groups, anywhere anybody wants me to speak. I'll go to panel events and talk about endometriosis and women's health.
Anything to me is advocacy. So if anybody wants me to come and do something to talk about my endometriosis, I don't mind doing it.
I told myself, once I got out of my depressive state of having endometriosis, and really sitting down and thinking about what it is … how my life is going to change now that I have a condition … it’s almost as if I have to be the black spokesperson for my period, then I will!
Lauren: But this is the important thing, isn't it … it's also an issue of representation. We already know that we're in this medical system that's dominated by old white men, basically. So possibly the first port of call is going to be a doctor. And what if you're an African-American girl and you're going to a white doctor, and you're not seeing yourself in the people who are telling you what's going on. And it's so important that you're out there really talking about diversity in this disease as well. And that this disease has diverse symptom, and affects people in diverse ways, right?
Samantha: Because a lot of people really tend to think that endometriosis cannot happen in black women.
Lauren: Who thinks that?! I wish black women were immune!
Samantha: Exactly. I was talking to a doctor who specializes in endometriosis and asking him about endometriosis in black women … how many people did he see, and is there any research I can at least read about endometriosis in black women.
And he said, they think it’s invisible when it comes to black women; they don't think it exists with black women. So if you’re trying to find research on it, you're not really going to find any.
Lauren: That’s disgraceful, isn't it.
Samantha: It is. I've tried to find a lot of research just on black women with endometriosis or even other reproductive diseases outside of fibroids … because fibroids is the one that we just all have to have. And I couldn’t find anything. It was very bare minimum, the things that I could find.
Lauren: But isn't that because of the bias in medical testing, too? And in trial groups?
Samantha: It is. They don't want to believe that it can be nothing more than what they can solve with a birth control pill, or put you through an MRI and say, “All right, we're gonna give you some time and see if it's going to shrink … and then you just come back.” You can't do that.
Lauren: Well, let's dig in a little bit … the role of the P word, privilege. Let's talk about that in terms of your specific health journey. Can you talk to us about where privilege showed up … where it may have been lacking? Have you experienced undue judgment, do you think, because you're a woman of color living with an invisible reproductive illness?
Samantha: I think so.
It tends to be a stigma in the medical community that African-American women can withhold pain at a higher standard than other ethnic groups.
Which I don't really understand.
Lauren: Yeah, that's BS.
Samantha: That's BS. So I've had those moments where I've been to different doctors who were Caucasian, either male or female, and they weren't trying to listen to anything. And this was after my diagnosis, and after I'd had 90-day periods for at least a good two years. It was like, a 90-day period … what? …how can you be bleeding for 90 days?
Lauren: Not the 90-day fiance. It's the 90-day period!
Samantha: I’ve had moments where I've been to the emergency room because I can’t take it — and been left in hallways. “There’s nothing we can do. Are you sure you're not pregnant? Let's go ahead and check your cavity and make sure.” There was nothing there. They will try every other testing in the world. But the minute I say I have endometriosis …
Lauren: … they just don't understand.
Samantha: “We don’t know.”
Lauren: It’s really amazing to me because I also wonder, in terms of the medical care that you were getting going to the emergency room … if you'd been a white woman showing up in the emergency room …
Samantha: I know regionally things are different. Women who have endometriosis who live in the UK, or women who have endometriosis and they live in Australia … those women seem to, from what I can tell … their government is paying attention. But here, they are not. They don't talk about anything outside of breast cancer for women, for the most part. Everybody has breast cancer. But more women have endometriosis than will have breast cancer.
Lauren: Do you think that's the mortality rate, too? Like, we know that people can die from breast cancer, but nobody's dying from endometriosis — even though they could die from ovarian cancer, right?
Samantha: I think so. And I think that a lot of people don't really take into consideration that because we're not heard, that, in turn, will have an effect on your mental health.
There are a lot of women who commit suicide from endometriosis, because nobody's listening.
That's a joke. Once people start to commit suicide over a condition …
Lauren: … it's bad, guys.
Samantha: We’ve got to pay attention. We’ve got to start listening … nobody wants to listen.
Lauren: Yeah. And what we already know is an epidemic in this country is that women are being ignored … but also that people of color, specifically women of color, are the last people to get care and the first people to die.
Samantha: Exactly. And I feel like there is a bit of privilege.
Lauren: A bit? I'd say there's a lot.
Samantha: You see, that’s going to lean me into my talk about birth control.
Lauren: Yeah, hit me.
Samantha: Because I feel like birth control is a form of general population control.
I feel like birth control was invented in order to stop black women from reproducing. People look at me crazy when I say that …
Lauren: I don’t think so. It's the first time I've heard that argument and I am willing to hear you out on this one.
Samantha: Birth control was made so that you cannot reproduce when you don’t want to. It wasn't necessarily created for your period. Now they're using birth control methods to be able to regulate periods. But you don't know what's in it.
Lauren: No one ever tells you. You get the pamphlet, but who reads those?
Samantha: Exactly. Birth control, on the surface, will help you. But you don't know internally if it's really helping you. And with all of these companies who have been giving out medications and drugs with cancer in them, I do not think that birth control having an effect on the infertility rate amongst people is super farfetched. Especially with women of color. And back in the day, your grandmas, your great grandmas … they were reproducing at an alarming rate. Great grandparents had, like, 13 kids! You don’t see people having that many kids like that now.
Lauren: They can't afford to anymore anyway!
Samantha: But you don't see people reproducing like that either. And hysterectomy is one of the largest money makers in the medical community —and black women are the ones who are getting the hysterectomies. I've read stories where birth control has caused so many issues. I know a young lady … she was on birth control and she ended up getting ovarian cancer after having a hysterectomy.
So you can't tell me that birth control is doing more good than harm. No way.
And in my opinion, and in the research I've done and people I’ve spoken to, birth control was really created to be able to control the population so that people will not be able to reproduce at those higher rates.
Lauren: Where it has a good purpose, the idea that women can have sex freely, the origins of its use in the ‘60s and ‘70s … during a lot of these movements for equality, when they started or when they became popularized … I think, sure, it has its use in that way. We all know Gloria Steinem has said, “I should be able to sleep with whoever I want, in whatever circumstance I want.” But by the same token … I'm really glad you're bringing this up … because we see something becoming very popular in the wellness industry. Which is discussions about hormone imbalance. Constantly. And most of the people dealing with it — and it's all women who are dealing with it — most of the women who are dealing with it have been on birth control at some point in their lives. Because a lot of us, when we're teenagers, go on it because the doctor says, “Well, you're of that age. You might as well take the birth control just in case.” We know that birth control has numerous ill side-effects. And that when there was that birth control that was developed for men, it was rejected outright because of the side-effects. But the side-effects for women’s birth control are so much more. The onus is always on us to bear the burden. And so it's fascinating to me … I don't know if you ever saw, but there was a wonderful Twitter rant from a Mormon mom … I think she's got several kids …this was a few years ago, where she said that all pregnancies are because of men.
Samantha: I did read that. And she’s absolutely right!
Lauren: But now we're seeing so many doctors who are able to capitalize on hormone imbalance. And perhaps we could conjecture that that hormone imbalance was created by birth control. Now, that's not to say that birth control isn't wonderful for some people. I'm sure that there are a lot of people who use various forms and have a great experience. But it's not universally true. I'm someone who was on birth control for probably, oh gosh, 20 years, and didn't know until I was an adult that it was actually causing more harm than good. And I went off of it because it was masking a lot of the symptoms of my illness, and I got sicker because of being on it for so long and being dependent. But it's very interesting that what we do is, we hand women drugs.
Samantha: Yeah! With no warning it could destroy them.
Lauren: Yeah, absolutely. And it sounds like, as you're saying, the statistics among black women as well, it's something where there are already more of these reproductive surgeries. Removal of reproductive organs, like hysterectomies … extreme measures being taken. But is it that in predominantly African-American communities, the Pill is being handed out more? Or certain pharmaceutical companies are getting more of a buy-in from the local doctors?
Samantha: Yeah. I feel like it's all about money.
Lauren: At the end of the day, when you trace it all back, it's money, isn't it.
Samantha: It’s all about money.
Lauren: So let's dig in a little bit into the health system. I know it's a whole can of worms here, but just briefly … we've named a few ways in which the health care system is not working for patients … doctors aren't recognizing women's health issues … handing out the Pill … taking extreme measures with women's health. What about ways in which it's maybe working, or practical ways in which you can imagine improvements in the system?
Samantha: I think it's working now that the conversation about endometriosis is starting to become more prevalent. I've seen some doctors who specialize in endometriosis on Instagram. And I think that there are some who really want to help, and really want to figure out what's the root and the cause of endometriosis.
So that way they can figure out a way to, if not cure it, at least make it treatable and manageable.
So that way you can still have somewhat of a normal life. But I do think that there are some who … you can tell them all the symptoms you have, but the last thing they're going to say is endometriosis. Now, for me personally, my doctor, who I have been going to for about two years now, she has been a very, very big advocate for me. Even when I didn’t want to advocate for myself, she was there advocating for me. She told me for months to get off birth control. I didn't want to. She kept telling me, it’s doing more harm. So I think in medical society, if you have more doctors that can be truthful, who can be honest with you about the drugs you're taking — whether it's really working for you or not, And then having somebody who, if you don't want to do something, then they're okay with it. And they’re not going to try to force you to do something else. And that’s a really big portion of the medical community having to change. You have to be able to know that if your patient isn't comfortable with taking something, you have to offer a different alternative for them that’s going to make them feel comfortable — instead of trying to shove it down their throat, or shove another treatment that may not be like the one you just offered. That’s why I try and tell a lot of people, you’ve got to make sure you have a doctor that will advocate for you.
Lauren: So many doctors really do care; they go into the field because they care. But it's about following through with that care and engaging with your patients on a level that's perhaps even beyond what you might have originally imagined. So we're sort of coming to the end here, and I like to round up my interviews with some Top Three Lists. I'm wondering what your top three tips would be for someone who maybe suspects that ‘something's a little off with my period.’ Or maybe they've even been diagnosed with endometriosis, and they're already in this world. They're living with some kind of reproductive, invisible illness. What would you recommend to women who are living life like you?
Samantha: The first thing that I would recommend is to look at yourself in the mirror and say, it's not your fault.
Samantha: That would be the first tip, because once you can get past that is not your fault that your period’s like this … it’s not your fault that you have a condition that may not allow you to have children … I think being able to maneuver through having endometriosis will be a lot easier.
Another tip that I would give is to please, change your diet.
It’s very hard to do, especially when you've been eating a certain way your whole life; it’s very difficult to do. So I wouldn't just change it cold turkey. Maybe give up one thing at a time. Dairy, not at all. With all the hormones in the cheese … and I love cheese.
Lauren: So do I. And ice cream. But you’re right.
Samantha: The hormones that are in dairy products? If there's any chance that you would like to get a little better, you have to give up dairy. I would also say: Drink green smoothies. Green smoothies help, especially in the morning it really helps my symptoms. Sometimes I'll get up and I can feel my flare-up getting ready to start, so I’ll drink a smoothie with a bunch of green vegetables. And that will not only help my symptoms a little, it'll also help my body with nutrition. That’s all part of the problem, too. Nutrition — we don't give ourselves enough nutrition, or we don't eat as much. So I try to supplement with a smoothie that's full of vegetables and fruit. And that really, really helps.
Lauren: What do you put in your smoothie? Give us your recipe!
Samantha: I juice green apples, two or three, and I do celery stock. And I'll take those two and I'll blend it with avocado, kale, a little bit of almond milk or coconut milk — just whichever one I have — and some ice. Sometimes I'll put different herbal proteins in it. I put some matcha powder in it, which is good for your reproductive organs. So I’ll put that in there, and sometimes I’ll use a little bit of ginger. Which is really good for your menstrual as well.
Sometimes I drink herbal teas; especially when I'm on my period I'll use herbal teas a lot. They help soothe the cramping.
Lauren: That sounds really delicious. You're making me want one right now!
Samantha: Avocado makes it creamy. That's why I like it.
Lauren: And then with the milk that you're using, it'll add a little sweetness so it doesn't just taste like a salad.
Samantha: Or, you know, some organic honey in it will help with the sweetness.
Lauren: Okay, this sounds delicious. I'm going to go make one right now!
Samantha: It really helps. When I drink those green smoothies, my body says, You miss me feeling good, don't you?
Lauren: So it does a little happy dance! (laughs)
Samantha: Yes. It's like my body is not thirsty anymore.
Lauren: And we do need those nutrients, you’re right — they’re not part of the standard American diet or certainly not enough. If we're getting our five a day …sometimes you need more.
Samantha: You do. Especially when it comes to green vegetables that are really high in iron — because of the blood we lose.
We’ve got to make sure we eat fruits or vegetables that will really help supplement the blood loss.
Lauren: I love that. Okay, one more Top Three List. This is: Top Three things that you are unwilling to compromise in your life, that give you great joy or comfort. They might be comfort activities when you're having a really bad cycle. They could be guilty pleasures or secret indulgences. What are your top three ‘I will not compromise … these things give me joy’ in your life?
Samantha: Sushi is one. Because eventually I'm gonna probably go to no meat. Sushi is like the one piece of food I cannot give up. And I'm going to learn how to make sushi myself so I can make it at home. I could give up everything else. Writing. I love to write. It doesn’t matter what kind of writing, especially poetry writing.
Lauren: And you’ve published a few books, too!
Samantha: Yes, I have. So I can't give up writing. I can't give up my characters that I've created in my head. What else can’t I give up? Even though I don't do it as often as I would like anymore, and that's because my period was 90 days at a time and every time I would do this, it would make my period start … but working out. I love to work out. I would do it all the time. Then once my period got to be 90 days and started going all out of whack, whenever I would go and try and work out, my cycle would start. So I'm not working out for a while. But now I don’t have birth control and I have my diet a little bit more together, my period doesn't start when I work out.
So now I want to get back into the habit of working out more regularly, because I think that'll really, really help with my symptoms.
Lauren: I think that's wonderful. And there are so many wonderful options now with adaptive workouts and gentler workouts with different apps available. So there's a lot of options out there for you, too.
Samantha: Eventually I’d like to get certified in yoga. That's on my list.
Lauren: I could see you really becoming like a holistic health coach … between the women's reproductive health …
Samantha: That’s the goal! I didn't know that was the goal for a while though.
Lauren: But now the universe is speaking.
Samantha: Now the universe is speaking, and I'm listening. That’s the direction I’m heading to.
Lauren: I do, too. I like the sound of it. I'm ready for my consultation.
Samantha: I'm very excited to be able to help women who otherwise may not have found somebody to listen.
Lauren: Absolutely. I've got one more question for you actually, which is … you did mention chemo as a treatment. Is that a common treatment of endometriosis, too?
Samantha: It is. They give this chemo treatment to men who have prostate cancer. They also give it to women with endometriosis to slow down the growth.
It worked, I guess.
Lauren: Chemo’s a tough one because it has so many bad side-effects.
Samantha: That’s what I didn’t like. It helped my period. I didn't really have a period. I had spotting, but it wasn't that bad.
But the side-effects, I was exhausted all the time. Getting out of bed, taking a shower — that was too much work to do.
And besides that, the menopausal side-effects with no sex drive and the hot flashes and the night sweats … I was over it. I was, like, I don't care if it is kind of helping my period. I can't do this.
Lauren: There’s got to be a better way to do it, yeah.
Samantha: Yeah, something else. They will offer and offer and offer the chemo as much as they can. But I am very much an advocate for ‘do not try it.’
Lauren: Stay away from the birth control, stay away from the chemo, try the holistic methods.
Samantha: I’ve always said that if you have to do birth control, that's fine, because maybe it works for somebody. Maybe if my period wasn't 90 days and it had become more regulated, maybe I might still be on birth control myself. I don’t know. I would try birth control to see if it will alleviate some pain for you. But, chemo, just no. I would try birth control to see if it will at least help regulate, and if it does, and you like it, then that's you. But just for me personally, it didn't work for me.
Lauren: Yeah, it’s really interesting that you've really tried everything and you've ended up with the most natural method.
Samantha: I’ve really tried it all; it didn’t work.
Lauren: Well, Samantha, is there anything else that you would like to share with our listeners before we sign off? Certainly tell them where to find you and your work.
Samantha: Try organic pads. That’s the message I try to tell everybody. Try organic sanitary products. They sell them just about everywhere these days now. You can find them at Target, WalMart, in grocery stores.
Try organic pads and see just how much of a difference your period cramps are, and your blood flow.
See how much of a difference that'll have. And don't go back once you like it … because you're going to like it.
Lauren: Or cups maybe as well?
Samantha: Or the cup. I don't use the cup; I haven't gotten there yet. But I do hear really good things about it.
Lauren: I made the switch! I actually did. I made the switch a couple of years ago, and I am so glad I did.
Samantha: Yeah, I hear that all the time. One day I'm gonna try the cup. But people, try the organic pads. At least start with that. Because the Always brand, Kotex … they have those chemicals in them, and you will be surprised how much of a difference your cramping pain will be, just by changing your pad.
Lauren: Because chemicals make a difference, guys.
Samantha: Chemicals really do make a difference.
Lauren: And that's close enough to your body, or in your body.
Samantha: Exactly, for your body to be able to catch all the contact and all the chemicals.
Lauren: Now, where can listeners find you if they want to follow you?
Samantha: So on Instagram, you can find me @_samanthadenae_. On Facebook, my page is Samantha Denae. And on Twitter, @samanthadenae08.
Lauren: And your website?
Samantha: My website is SamanthaDenae.com. When you go on my Instagram, there is a link there and my bio; you’ll find everything you need.
Lauren: That’s perfect. Well, Samantha, it has been such a pleasure talking with you today. I've learned so much from you. And I hope our listeners will find this to be really inspiring — and especially to all of the people who identify as female out there or have female parts, go have ‘em checked out, and make sure you're taking care of your body!
Samantha: Please! And if your doctor is not listening, find another one!
Lauren: Yep, I love that. That's another tip for the list!
Samantha: Thank you so much.
Lauren: Thank you.