Endometriosis - The Real Story | Karen Scoggins

I am fighting for my life. I'm fighting for my life and trying to find enjoyment in my life even if it's limited.

There's not enough that can be said about my next guest. She's my ride or die partner in life and is an amazing woman and whom I love and adore more than anything in this world. Her name is Karen Scoggins and she is my soulmate and she's my wife. When I first started this show, I wanted the show to have, well, an approach of normal, ordinary people creating extraordinary lives by building from adversity and walking through that. Well, my wife is no different. In 2019, she co founded Endoarmy, a nonprofit organization that she co founded with Keanu Scott to help women get the needed help they deserved. Now, Karen did not co found this nonprofit out of a sincere care for other women only, but also because she herself actually has a pretty severe case of endometriosis, along with all the byproducts that actually come with it. That's taken her from running miles on end to regular debilitating pain that forces her to struggle to get around with basic mobility, leaving her passionately committed to helping other women just like her not suffer in silence any longer. Here to share more about what we all need to know is my beautiful, amazing wife, Karen Scoggins. Hey, baby, how are you doing? Hello.

Hello.

Yeah, mama.

Oh, geez. No baby talk today.

Oh, come on. Like the audience needs to see the real life. You know what I'm saying?

Maybe. Maybe next time.

Well, look, you know, it's. We're recording this in the beginning of March, and March has been a specific, important month for your life. Specifically, you know, for the audience knows that I have a wonderful wife who I've bragged about a lot. And I think it's over.

Bragging?

No, no, under bragging. If anything, I definitely married up for sure. But you know, March is endometriosis awareness month.

Yes, it is.

Last year you had this amazing March planned. You had a sold out event here in Raleigh, became a state representative for endometriosis, and then Covid kicked you in the gut.

Yeah, it really set us backwards. You know, if you know 10 women, you know someone with endometriosis, and I am one of those 10 that are actually diagnosed.

I really wanted to do an event, a live event, because it really matters. Because most of the time, a lot of the warriors that are diagnosed with endo don't have a community or a place where they feel like they can, you know, be welcomed. And I Just wanted to be that soft place for them to land, to have help and community. And, you know, out of that, you know, we became Endo Army.

Yeah. Which we're going to get into a little bit for sure. Which I'm super psyched about. Well, I mean, as your husband, I'm obviously super, super proud. I get to see the behind the scenes struggle and the behind the scenes winning when it happens. So you had an amazing Instagram Live. Last night was pretty amazing. But I tell you what, the vast majority of the world, I would say, and this podcast is viewed on YouTube and on iTunes and whatnot, and we have a worldwide audience. At this stage in the game, the vast majority of the people in the world don't really know what endometriosis really is. What it's not.

It's not really all that publicized. It's starting to get more traction now. But. So from your perspective, what is endometriosis and what should people know about it?

Well, it's hard to.

There's a lot of misinformation out there and it's very confusing if you're navigating this journey, especially when you're isolated and you're dealing with pain on a daily basis. But for the definition, even if you Google it right now. So if you were to go into Google and just basically type in what is endometriosis? Right now, it is the wrong definition. And a lot of the warriors around the world are trying to click the button and tell them at Google.

That is the wrong definition. So their definition, they're saying, is that it's endometrium tissue. So if you want to know what endometrium is, it's the lining inside of a woman's uterus, and during menstruation, it basically sheds itself. And what they were saying is that it is found implanted outside of the uterus. Okay, that's the wrong definition.

So basically, it is a chronic inflammatory disease.

That is basically characterized by endometrial. It's similar like glands and stroma, and it's found outside of the uterus. Adhesions, lesions, scar tissue. It chronically.

Is inflamed and irritated and it tethers.

Other organs together and causes horrible, debilitating pain. It's not just once a month, it is every day. Every day.

Yeah. And I think it's important for people to understand that because, you know, it's one of those disorders or diseases that we've discovered that, you know, currently has no cure.

No, no cure.

So for the audience's benefit. You know, what are some of the symptoms? Because one of the things that happens so early on is it's rarely diagnosed in time to even begin to treat it at all. And then a lot of times it's treated improperly. So what are some of the symptoms of endometriosis?

Well, I started to notice symptoms when I was 12 years old.

They say it normally takes seven to 10 years to actually get from the onset of symptoms to get your first diagnostic surgery. And the only way you can actually be properly diagnosed is to try to find an endometriosis excision specialist. It's so important. There's a lot of misinformation out there in regards to specialists. When you look it up, you believe that the medical community has your best interest at heart. And there are only around a little over 200 in the entire world that are actually specialized in excision removal.

Who do have your best interest at heart. And it's very hard navigating that because there is no mandate on who can actually put specialists in front of their name. And then that in itself is very confusing because you can have multiple surgeries with these specialists and they don't know what they're looking for and then they're using old techniques that just don't work and it's just not helpful or beneficial. So for me, I noticed symptoms when I was 12. That was the beginning of my menstruation cycle. Horrible stomach cramps. I was missing school. I didn't, you know, I was putting my head down on my desk. I was very fatigued. I was very tired, very lethargic.

And as a 12 year old, you know, you become a little bit more quiet. You are embarrassed, you don't ask questions because you think it's just normal and that, you know, the joke was, here's a my doll, you know, eat a bag of Doritos and some chocolate.

But. And that's why I think it's so important that it is taught in, you know, middle school or even earlier if we. And to advocate for those young women.

That are suffering in silence.

Yeah. And, you know, it's funny. It's not funny. It's important to note that the work that you've been doing the last couple years with your co founder, Kiana Scott's been astounding. Giving women a voice that seldom have one. You know, like I said, I mentioned that you had an Instagram live last night that was pretty amazing.

I ramble a lot.

Well, no, I think you connect a lot because, you know, you're True to yourself and you're true to the empathetic nature that you put out in the world. One of the most interesting things that I have faced being your husband is watching this beautiful, vivacious woman who is running miles upon miles a day, you know, and being incredibly active also. And now being in a position where you struggle to get around from time to time.

Oh, yeah.

And then all the moments leading up to that, all the stuff that's not really talked about, I haven't shared a lot about publicly because it's not my place. It's your place to share what you want to share and when you want to share it.

Yeah.

You know, but I can still remember very vividly the first time that I. I was pretty much in a deep sleep. In a deep sleep, I felt like I heard what I felt like my. My wife was crying and, like, lack of a better word, moaning. And sure enough, I woke up midstream. And you were doubled over in pain on the floor. And I wasn't sure what to do except for try to go to the emergency room. And, you know, we've made several emergency room visits. We've made several doctors visits. You've had Now, I think, 11 total surgeries from the time you were young to the time you're now, including a full fledged hysterectomy.

Yes. At age 30.

Yeah, at age 30. So which radically changes everything.

Yes. It will throw you into menopause very early, which is now they're finding is very hard on, you know, your body.

Yeah.

It rapidly ages you. You'll develop. By the time they say I'm 50, which I'm 42 now, you know, I can have symptoms of heart attack.

So, you know, it's. It's quite scary what happens to a lot of young warriors out there that are struggling.

To try to cope. And, you know, I begged, actually for a hysterectomy. I was 28, and I was living in Ireland at the time. And they're very, very conservative over there. And I know things are changing now, which is awesome. So go Ireland.

But I had to leave. I had to leave the country and come back to America to get treatment. And I found an amazing, you know, excision specialist at the time, and he gave me the hysterectomy and he left my left ovary so I could still make, you know, produce hormones so it wouldn't be as hard. But I still had horrible hot flashes. My hair was falling out. I developed horrible acne, which I never had a problem with acne in my younger Years. And it was really hard, you know, at the time. And I was struggling. I was struggling. I don't think I ever mourned the loss of my female reproductive system. So the fact that I couldn't have any more kids.

I'm blessed that I had two children. A lot of women can't conceive because it causes horrible infertility.

So, yes, there's a positive. But by the time I was 23, I got my diagnosis of endometriosis. And the first treatment they did, and we're talking early 2000s.

Was they did ablation surgery, which means it's basically like a blowtorch. I call it burning or cauterizing the lesions, the endo lesions themselves. And what happens is if you don't get rid of the root of the disease of endo, then it will get irritated, reoccur, and keep growing. Endo lesions produce their own estrogens, their own hormones, and they do whatever they.

Want when they're almost like they're their own entity, they are almost like a parasite of some kind.

Yes.

And one of the things that was shocking to me. Well, there's a couple things that are shocking. I'll start with the first one. The first thing that was shocking to me as your husband, after we started making these doctor visits, is how quickly doctors were trying to write. Write you off, meaning, you know, you're seeking painkillers or you're seeking, like, the. The responses. The responses absolutely blew my mind and, quite frankly, pissed me off.

Yeah. I had to tell you to calm down because.

Help my wife, damn it.

Pardon me.

I don't cuss often, but, well, it's.

Been such a long. And for you.

Offense, I'm a fixer. Yeah, you want to fix it, but, you know, you've only entered my life since 2014, which I'm grateful for, but I've been suffering so long without you. And, you know, my previous partner, my previous marriage, he was not supportive, didn't believe me. And here I am crying myself on my hands and knees in the bathroom, you know, because I didn't want my children to see me hurting. I didn't want to be a burden on them, but mommy just couldn't do it.

Yeah.

You know, even taking a shower was difficult. Taking a bath.

You know, just doing daily tasks that everyone really doesn't think much about. You know, vacuuming or doing laundry is so taxing that I just couldn't do it.

I see it now. I see it now, day in and day out. You know, there are days the pain is always there. There are days when it seems like it's inflamed and it's more pronounced than others, but the pain's always there.

Yeah, I know when I'm having a good day, I want to do as much as I can.

You overdo it.

And then I overdo. But I feel like a lot of the chronic illness warriors out there, you know, we have. Also, if you have endo, you're more likely also to develop a comorbidity, which means basically you have multiple other illnesses. Yeah, diseases on top of not just endo. But, you know, I was diagnosed with endometriosis, adenomyosis, and there is a cure for adenomyosis, and that is having a complete hysterectomy, but there is no cure for endo, and I did not know that. You know, at 12, I remember going in to see my OBGYN when I was 16.

And I remember him just looking at me and telling me, well, if you just get pregnant, yeah, it's crazy. At least you'll have reprieve for nine months. And I'm like, I'm 16. I don't want to have kids at 16.

But I think it was in a way for him to just say, well, at least you'll have a break. Your body will have a break for nine months. But they don't tell you, yes, conceive. But what happens after the nine months? What after, you know, what happens to your body after the child's here or children are here, and then you're home.

By yourself dealing for children now in twice the amount of pain?

You know, I mean, I had two in diapers and trying to cook, clean, take care of them, make sure they're still breathing. And no one was really there for me. You know, I'm an only child, so I don't have brothers or sisters or really a support system. I mean, you know, thank God for my parents, but, you know, my mom, you know, she really talk about endometriosis and how it affected her life. I just know that as a young, you know, child, I saw my mom struggle with multiple, multiple surgeries. I want to say she's had over 20 in her life, and she also had cancer, you know, and she just didn't really tell me. And I think a lot of it is taboo as far as women's, you know, women's, menstrual health, women's, you know, no one wants to talk about it. And frankly, I'm like, well, tell everyone. I mean, I'll shout it from the rooftops if I have to. If it saves someone. If it saves someone, their reproductive organs. I mean, I've had eight organs removed and 11 surgeries. You know, not just my pelvic organs that were removed. We're talking about adhesions that were stuck to my bowel. Women that are having to have ostomy bags because it grows and attaches and distorts your insides.

It fuses, in many cases, organs together. I know. One of the things that I guess, impedes you the most is obviously these. What looks like fiberglass. We watched a movie one time, a Marvel movie called Venom. And in this movie, Venom, the villain, if you will, had this. This essential. This suit that he couldn't take off. Right, right. He tried to take it off, and it would just slap back onto him. Right.

And that's what it's like on the inside.

Yeah.

Really? And a lot of people say, you know, it's barbed wire every time you move. So, yeah, if you think about that or, you know, a rose vine and all the sharp barbs on it. Constantly, constantly. It's like wearing that internally. And it's hard for me to, you know, bend over, grab things, lift things without paying. I will pay a price for moving objects, for walking around the block. It set me back, you know, which.

Is stuff that we. That we used to do all the time.

Exactly. You know, I mean, right now, I mean, you bought me a mobility scooter, which I'm so thankful for. I got some of my freedom back, which, you know, you never know what it's like until you have it taken away.

You know how I discovered how much. How much that was going to mean to you? We were at Walt Disney World. You got on a scooter and I was gone. I was chasing you. I was like. I thought, like, the speed was, like, cranked up only halfway, and I still couldn't keep up.

No, I was just excited because I felt like wind in your hair. I didn't have to stop anyone from enjoying their time, you know, And I think a lot of warriors, they feel like they're a burden not only to their friends and family. They just feel like they're trapped inside themselves and are very isolated. I mean, even before Corona, you know, and Covid.

I was already isolating, you know. Yeah. And a lot of that's very true. A lot of warriors that are right now, like, isolated, they don't know who to talk to. They don't know where to go.

You know, there is hope, there is help out there. I mean, a Lot of warriors have killed themselves.

Your suicide rate is very, very high. Well, let me. I want to touch on something real fast because I think this is very important. You're sought out quite a bit, especially when it relates to endowarriors, which. An endowarrior is a person who struggles with endo and all that comes with that.

Right.

There's different severities of endo.

Right.

You have a person who has.

Now they're saying four. There are four stages. I was stage four at age 23. But it doesn't minimize or take away from someone's pain. If you're stage one, you could be in debilitating flares from endometriosis. So really the staging process.

I think may have to change at some point.

Oh, for sure. Well, like I said, one of the things that I've been both inspired about and encouraged about, why I've been just watching you battle, because as a fix, there's absolutely nothing I can do except to go get you a heat pad or get you an ice pack or whatever temporary solution there might be. And again, that's just to take the edge off. In some cases that even work. But one of the things that has specifically struck me is this.

Essence of you counseling and coaching women who are about to go into their first visit, their 10th visit, their 15th visit into the doctor's office. And one of the things that I've seen really impact a lot of the women that you've worked with specifically or talk to is this notion of understanding what to expect. We recently had a mutual friend, somebody you're obviously really close to because she's now walking this journey out. She's never done it before. And you were literally able to give her a play by play book on what to expect at her first visit.

Yes.

Talk a little bit about what that first visit is because we're this, this video and this audio will be heard and seen by someone who maybe has got all the symptoms but never been diagnosed. And then some cases they're fearful of going, getting diagnosed. So what is that experience like?

So I'm going to touch more about the symptoms. So a lot of the symptoms.

Are correlated or not correlated necessarily with your menstrual cycle. Because if you have severe or endometriosis period, you are going to feel like your.

Abdomen is very distended. We call it endobelly where you will look at least eight months pregnant. You'll take a picture of yourself in the morning. Okay. And then by the end of the day it'll be so Inflamed and so swollen that people will come up to you and ask you when you're due. Now how that affects the psyche of women with endo, some of them cannot have children and what that does to them mentally to know that they'll never be able to conceive. And here they look like they're pregnant. I mean, you would think they are. And people go up to you and touch their stomach and what that does over and over again to say, no, I have endometriosis. And people are like, oh, okay.

So that's one of the main symptoms. Of course, pain with intercourse is another one. A lot of women with endo, it affects their partners. Some are ashamed or embarrassed because it hurts.

Some women have lost their partners because in some cases it's so painful, it's non existent.

Like it's so much more than just the physical intimacy part. There's emotional intimacy. I mean, there's so many other things besides just physical intercourse.

I will be personal testimony to that. I mean there was this good six or eight month window when I was just trying to understand and it took me a good bit to understand. It took watching. And for those of you guys who are guys and gals that are partners out there, I would say that you need to watch some important endometriosis related videos on what that content is. And I'll get those links and put them in the show notes below the video for, for their benefit because they were very eye opening. I had no idea. I thought that it's like any other, you pull a muscle or whatever and the pain is there and then enough healing goes by, you can get back to normal, only to find out that it's literally like walking around with barbed wire in your gut on a regular, regular basis. Not only that, I was also surprised to learn that endometriosis can literally seep into every single organ in the body.

And it's now, it used to be found in every organ but the spleen. And now there are cases coming out recently that it is found in the spleen. So it is found in every part of the human body, every organ. And so what that has done for me is I was going in, I was.

You know, debilitating pain, I felt it in my shoulder. And here I am working 13 hour days and I'm a single mom and you know, trying to work and not take sick days. And a lot of us, you know, warriors with endo, we take, we miss a lot of days of work, we get fired from jobs, you know, we can't finish our dreams, our hopes, you know, finish school, go to, go to class, and we miss a lot of family functions. We lose a lot of friends.

Yeah. Because there's a pullback phase. There's also the friends don't understand. They're like, well, I hope you feel better.

Yeah. And I'm like, it's not a common cold. And, you know, I got to a point where I was getting really upset, you know, because I know people mean well when they say, oh, I hope you feel better. But what that does to someone that has a chronic illness where there is. There's no cure, and what that does to them is like almost dismissing them, saying, well, it's not that big of a deal. It's just like a common cold. So I hope you feel better.

Yeah.

And, you know, we deal with that not only on the regular, but then we go to doctor visit after doctor visit seeking help. And I remember I was crying. There's a picture of me on Instagram, my Instagram. And I remember I had to document it because I couldn't believe that I was trying to seek help. And a doctor refused to send in a referral for a pain clinic. She point blank said to me, they won't help you with endometriosis. I was at a loss for words because here I am asking for help for the people that are supposed to help me because I don't know how to help myself. I felt like, to a point of I would just. If I had a knife, I'm just gonna cut it out myself. You know, it's a fine line every day to wake up like this and live life like this. And chronic pain every day. Have migraines. I mean, that's another symptom. Chronic migraines. Horrible fatigue that grinds you to a halt. You know, you can't get enough vitamin B12. You know, it's just, it jolts you. You know, you just can't get out of bed. You're in such, you know, debilitating pain every day from minor things. You know, like I said, lifting a box that may be five pounds, you'll feel a pressure in your lower abdomen. It'll feel heavy. You'll feel a heaviness.

Sometimes you'll have, you know, you'll pass clots, and that's quite scary. You'll be in the bath and all of a sudden you're like, what in the world's going on with me?

I want to give a little perspective to the level of pain. So I'll say it this Way we were celebrating our honeymoon back in Ireland.

Yes.

And it turns out we didn't know this at the time. We found this out later that you were literally walking around Ireland with a torsioned ovary twice. So to give. I want to give everybody perspective. So women, when I say torsioned ovary, they know exactly what that means, and they know the. Oh, my gosh, that's worse than childbirth.

You know what? Okay. So I can say, too. Men can have.

Torsions.

I want to hit. Yeah, I was going to hit that, like. So if you're a man right now, and maybe you have a partner that is. That has endometriosis, I want to give you proper perspective. Imagine somebody took your testicles and twisted them and put them in a vice.

Yes.

Does that sound painful?

And you're supposed to cook, clean work.

Well, like I said, we were walking.

Around Ireland, and then kids, you know, jump on your lap and want to play with you. You have pets?

Our grandson.

Yeah. It's just. Can you imagine living your life like that every day, day in, day out, with no pain? Like, no. No relief in sight?

Well, the reason I wanted to bring that up is because when we started doing these doctor visits and the pain clinics and stuff like that, I went from being a disbeliever in a lot of different medications and stuff like that. Now I'm just like, whatever it takes to make her feel. Take the edge off kind of deal.

Yes.

Your condition has gotten so prevalent and like so many other endowarriors that you had to file for dis. Formerly filed for disability. Just so we could actually get handicapped placards. Just so we could pull closer to the freaking grocery stores and stuff.

Oh, yeah.

You know, so it's. It's. I wanted people to understand.

How difficult this really can be on someone who struggles with this. Now it is possible to go and have a.

I'll let you name the surgery because I always get it wrong. As far as how you put the endoscopy, what do they call it? The one where they blow your belly up and they go in with the sticks and they take it apart. Yeah. See, she's laughing. I knew I was gonna get that right.

That was good.

That's right. I described it right. That tells you. I watch the videos.

Laparoscopy.

Lapar. Yeah, that one.

That was good. Yes. A proper laparoscopy where they actually go in and you may have four incisions in your abdomen where they go in with tools and try to excise.

It's the only way to properly diagnose it as well.

Yeah, they can look through everything. I mean, they can even put dye into your ovaries to make sure that they're functioning properly. And a proper, skilled specialist will do whatever it takes. Many hours you can be in an OR room. And a lot of it, it's sad. A lot of the times it's not covered by insurance, and a lot of people just don't know where to go. And so, you know, you're shelling out $20,000, $25,000 each time for surgery. And, you know.

One of the benefits that we did last year for Endo army is we actually sponsored our first Endo warriors excision surgery. We weren't able to cover the full in total cost. She did not have insurance at all.

Well, it doesn't. Insurance doesn't cover it anyway.

So it was $7,000 that Endo army we raised and donated. Well, paid for. And it paid for the complete. The actual Dr. Barron's surgery, which if.

You'Re worried, if you're concerned about, like, if you're struggling with Endo or maybe you don't know if you have or don't have. We're gonna put a link to Endo army in the show notes because I want to make sure that everybody has a source. Both Kiana Scott and my amazing wife Karen have done the research. They know who's good, who's bad, kind of scenario, who can really help you. The other thing I wanted to mention real fast is with that specific surgery.

Well, I just want to correct you real quick about who's good and who's bad. I just feel like they need to go back to.

So it's not the intent, it's the education.

They need proper training, and they don't know what they don't know. I don't feel like they mean bad. I just feel like there isn't. They're not properly trained to understand, and that's where the root of the problem is. And I feel like if they had proper, like, we study our illness, right? And most of the times that's how we advocate and tell, you know, the doctor, sorry, but this isn't a proper fit for me. So if, you know, if all you can do and you can't afford surgery and all you can do is just try to find something. So you're pulling, like, at straws basically, for treatments. They're like band aids. They're just temporary. That's all there is right now for Endo. And so you'll be on birth Control, that's the first line that they're going to hit you with, whatever kind of birth control.

And that's just going to try to regulate the estrogen levels. I mean, what's the purpose behind it?

And it's. They're trying to minimize the symptoms and they're kind of masking the symptoms of endometriosis. But the problem is that endometriosis creates its own hormone. It feeds off estrogen.

It will inflame it, it will irritate it. Eating any kind of soy products. I cannot eat soy of any kind. And it's. You try to eat vegan, and guess what's in a lot of vegan food? A lot of protein. Daughters has soy in it, and it has soy. And so you gotta stay away from soy. And if you look at or follow any kind of endo diet, it's gluten. Gluten is another inflammation.

Make sure you get to eat lettuce. That's about it.

But, like, what did I say? I was like, you'll get, who knows, listeria or some kind of abdominal illness. You know, I'm like, well, I don't know if that's good.

The other thing I wanted to mention, too, is because, you know, we've talked a little bit about the symptoms. We talked a little about the suffering that kind of comes with it, and the suffering in silence. So many women don't connect with other women because they're scared to in many respects. But one of the things I want to make sure everybody understands because we just mentioned, okay, well, this is a surgery that works and it can bring some relief and that kind of thing. It doesn't end it. No, it doesn't end it. It might give you a window of time.

It could be months, it could be years. And some. It's hard to talk to a lot of older women specifically because they were told it was in their head, that the pain can't be as bad as what we're telling them it is. And because it's a chronic disease and there is no cure for it, we are often very dismissed, looked over. We are told we have pelvic inflammatory disease, which is stemmed from having an STD or sti, and.

You feel this embarrassment as they are doing a pelvic exam and an er, and they're saying, you have pid. And you're like, no, I don't. I have endometriosis. It's in my charts. Don't you see? It's in my charts. And it's very. You just Feel, you know, hopeless. Yeah, you don't know. You're trying to get help and no one's listening. It's like screaming in this, you know, filled stadium and no one can hear you.

You know, the other thing that absolutely blew my mind, you know, just being along for part of this journey with you, is how incredibly underfunded any type of research is for endometriosis.

Well, look, I mean, one in ten people have, you know, one in ten people have diabetes. Well, everyone calls it the itis, you know, or everyone. Yeah, everyone knows diabetes, but no one really knows endometriosis. And 1 in 10 is just a number that they're saying that's just diagnosed patients with endo. Okay, what about all the women, especially minorities, that have endo? I mean, I'm very passionate about, you know, my. My fellow sisters in the black and brown communities that are, I mean, just looked over.

Because it's like another step. It's just a whole nother world. And it's very sad. I mean, not only as, you know, Indo warriors that were suffering, also it affects transgendered as well, you know, and talk about.

The rate of suicide in that community. And it breaks my heart, but I know it's a fine line that we walk when we're dealing with chronic pain, that we just want it to stop, and it doesn't stop. And what will it take for someone to wake up and go, let's put some funding behind it. Let's get this out here right now. I want to say it's around a dollar.

Yeah. And one of the things. One of the things that I gave you my word on, and I've got the team's buy in behind it, because obviously everybody knows and has watched you suffer in silence. You've obviously been behind the scenes more than in front of the cameras and out there. I'm hoping to change that a little bit. Right. Because I think your story is very powerful. I've seen the impact that you have on people. I've seen people literally walk up to you for the first time and you give them a hug, and they just break down, like, completely break down. And, you know, I know that when you. When you had your first.

I just want people to be seen, you know, and I know what it's like to be invisible and hide away by yourself. And, you know, a lot of us suffer with depression, anxiety, of course, all of the above, you know, and it not only affects you physically, but mentally, spiritually, you know, and it's all it needs, a whole entity by itself. Endo as itself, it is an overhaul. The thing is, it's not regulated. Why is it not regulated? Anyone can put specialists in front of their name. And it makes me so angry and passionate that how is that possible? When you, for instance, are diagnosed with cancer, you don't go to any doctor, just Joe's doctor.

You go to a specialist, you go.

To an oncologist, and then you have a whole team of support surrounding the patient, the family. And here, Endo patients, we don't have anyone. It's just like crickets, okay? They send us off. Well, I think we have Endo. Here's your birth control. Or here's a shot.

Or here we can do your hysterectomy or whatever.

Yeah. And you start losing organs left and right. And then before you know it, you're like, what did I just do? You know, not every doctor, of course I'm gonna say that, wants to do that approach. But there are sometimes, you know, whatever you can afford because it's very expensive, and if you don't have insurance and you can't afford these surgeries that are not covered by insurance, where do you go? What do you do? And, you know, Endo army, we just wanted to wrap our arms around them and try to help them seek treatment options, you know, if they can't pay for their medication, if, you know, whatever money we raise. Kiana and I do not neither.

You take a salary?

No.

Yeah. You know, every dollar is going back.

And we started in 2019, and we'd never met each other. We. She. We were in a Facebook group. I mean, once you start trying to figure out what is going on with Endo in your life, and you will read everything, you will go on and search support groups online. And that's how I connected with Kiana. She sent me a message and said, hey, I'm doing this event.

Yeah.

And she told me the date, and I was like. I told you. I was like, let's go. And you're like, okay, let's go.

You know, one of the coolest things about that entire experience that I can remember as your husband, because I've been walking in my own little hopelessness watching you struggle, you know, because, again, there's nothing I can do.

No.

Right.

You physically can't.

You know, it was really cool. It was really cool to go there and help set up and then basically get out of the way and then essentially watch your community form behind your eyes. All these different people who felt unseen, unheard, unvalued, unappreciated. Struggling with this illness, struggling with the pain that comes with it, struggling with the broken relationships that come with it, struggling with wanting to give up, struggling with thoughts of suicide, struggle with all this stuff. You know, it was really cool to watch you. You guys basically find your people.

Yeah. I had never been, you know, I mean, I'd never been in a room before of other warriors that feel like me, that think like me, that have gone through, you know, horror stories and are trying to find a glimmer of hope to hold onto, to make it through the day. And to be in a room of that was. I mean, you know, it was so emotional. I mean, I don't think there was a dry eye the whole time, and we couldn't let go of each other, you know, and we're still connected, even though we're in different states. And, you know, I feel like I've. They're my family, you know, I know.

When we started, I say we. I helped with resource, but I didn't help with planning or anything like that. But when you went to go do this march, I mean, you had people coming out of the woodworks.

Oh, yeah, it was a huge. I mean, I just posted on Eventbrite and started, you know, just using my Facebook and Instagram. You know, I'm still learning Instagram. I'm not very.

I mean, you know, but, I mean, I could. Yes, I can return, but.

I just. I was trying to do whatever it took to get the message out there. And I was really floored with how many people that I didn't know. Not just the ones that I knew that lived in the state that were gonna help friends, family, but how many just were seeking it out, Seeking out for their daughters, seeking it out for their mom, you know, their friends, their family. Like, they were like, I'm doing it for, you know, my sister, you know, there they were, my partner, my wife, you know.

Yeah.

And it was overwhelming. I mean, I was selling out of the. The bracelets. I was selling the shirts, you know, and to really. It got down. I was still bound and determined to keep it going, you know, right up until, like, what, five days before, you know, Covid shut down everything.

The state shut down. That's the only reason we didn't do it.

Yeah. And I just didn't want to put any other warrior out there, you know, of course, you know, in harm's way. And as much as pride, I had to put it aside. And, you know, it was just like, it was my baby. I wanted it to happen. I wanted. I knew how important community is to those that feel alone. And it was just like, I want this to happen. And it was. It was sad. It was like, okay, we're going back on the shelf. And Covid is now the forefront, which, yes, it needed to be at the forefront. But for those that are always suffering in silence and already feel like they're on the shelves.

Well, Covid affected this endo movement in a lot of different ways. Obviously, it all of a sudden took this community that was forming and pulled them back apart with someone who struggles with endo, already has a lower immune system.

Yeah. And then you couldn't do surgeries.

And then I was going to say the next thing you do. All the people that had been waiting for these surgeries to have some level of relief all of a sudden had to wait, not knowing when or if.

And quite a few of them, you know, killed themselves because they just couldn't wait anymore.

Yeah.

The pain was that bad.

Well, a couple different things. First of all, I wanted your. As your husband, I want to encourage you to try again, because I think it's a movement that needs to take place. And, of course, you got my full support about that. The other thing is, I mentioned that I didn't get a chance to finish this earlier, but, you know, we within the Journey Principles Institute, one of the businesses that I own, or I should say we own, really, because if it wasn't for you, I wouldn't be doing it. So we've dedicated a certain level of resource that as we are able to become profitable and do our part, we're going to give to this movement. We're going to figure out a way to give to this movement. So that's one thing. The other thing is I think people need to hear more.

I just. I want to encourage you to just keep going.

I mean, it's. I am. If most of you guys know me that are close to me, my whole life, I've always been in the back, and I don't mind. Although everyone wants me to be a leader and pushed out to the front, I am bound and determined to do things my way and my way only.

Yes. She's a bit of a rebel and a stubborn, stubborn.

You give me a manual and I'm gonna create my own.

Yeah.

So I've always been against the grain. That is just who I am. And I guess, you know, I don't roll over and take it lightly. And, you know, this is one of the things that I've struggled with my whole life. And I don't remember A day that I didn't have pain and, you know, it needs to be out there. I mean, if diabetes and cancer, I mean, it's awful, but we've got nothing.

Yeah.

You know, we are barely holding on to a promise of a someday, of a someday. There will be, hopefully, a cure. That's what gets me up in the morning. That's what keeps one foot in front of the other. Even if I'm using a cane or mobility scooter. It's something to feel some sense of normalcy in my day, you know? Yes, I love music. Yes, I love to create, you know, Yes, I love home decorating.

I got news for you. She can give Joanna Gaines run for her money. That's my personal opinion.

But it gives me some sense of, like, I'm normal. And I think a lot of the warriors are trying to do that, whether it's creating bracelets or creating jewelry, you know, or T shirts or stickers, you know, especially on Etsy.

Yeah.

You know, or Amazon. I mean, it's. I'm wearing all the yellow I can. You know, yellow is the color of endowarriors. We wear yellow with pride. And.

And anytime I speak on stage, I'm always willing wearing a yellow. What do you call them? Pocket square.

Yep.

And that's what it's for.

And that's good. I mean, it causes people to ask, what is. Why. Why do you wear yellow? It opens up the door for people who may want to. May not know. And a lot of people don't know. I mean, if you were. If I took a microphone and went on the streets of Raleigh and asked, what is endometriosis? I don't know.

I mean, people can have a hard time understanding what it is.

Yeah.

I want to say a couple things while I have. You think about something. And the thing I'd like you to think about is maybe three to five things that someone struggling with Endo can do to better cope and. Or have a better quality of life. So if you don't mind thinking about that, I'm going to say something. As your husband, AKA partner in crime, partner in life, ride or die, buddy, whatever you want to call me. I want to encourage those of you out there who are partners. Right. Who are partners with somebody who struggles from Endo, I can tell you that you need to be.

Available, make yourself available to education. It's important that you digest that content to make sure that you better understand what they're facing. Some of the most pivotal moments that I've had with Karen in the Past have been more about just being present and listening, which is difficult for me in general, but you know, but actually doing so with some level of awareness, there's not going to be a fix it. I think another thing that you can do today that would help your partner specifically is I think that you can just make yourself available. So in the essence that there's a heating pad or a bag of ice or something that can be done. Some days it's simply taking out the trash for Karen or mopping the floor or whatever so she doesn't have to do it and go through pain because when she's doing it, she's in pain. When I'm doing it, I'm in a rush, alright? So if you think about that, there are different ways to support your partner. They need to feel seen, valued, heard and appreciated on a regular basis. And as a human being, we don't do that well as humans. So take those attributes and begin to apply those to your relationship. If you haven't actually taken the time to speak to someone or speak to your partner about what they think, what they feel, what they see, then I would just ask questions, right? Ask questions, get more insight. And as you do that, hopefully that will help your relationship continue to grow. Because they have the same needs you do. They want to feel connected and loved and appreciated. And with that said, I wanted to turn it back over to Karen for just a second and helping into warrior.

Well, the things that have helped me is doing the research, you know, even if it's right or wrong, information. It's information and you know, it's. You become your own advocate, you become strong. I call it, you know, arming yourself with armor before you go into a doctor's visit. You know, it's knowledge, it's truth. And you know, you're not crazy. And it's so sad that, I mean, almost every single warrior that I've met, they have tears coming down their face and they're like, but what if they don't find anything? We all say that, we need to not say that because it is not imaginary. You are in pain. That is not normal.

We are taught very young that a period is normal. Well, guess what? This is not normal. This is not just a period. This is found everywhere in the human body. It's found in your brain, it's found in your lungs. I mean, I was 28 and had, you know, pleural effusion, which is fluid in my lungs. And it was caused, you know, I was having my period every other week for a Week straight, I became anemic. You know, that is not normal, and that needs to open, you know, up the doors to talk more freely about it. And, you know, some of the things, you know, go online. Nancy's Nook is a great place to find actual vetted endospecialists all over the world. And like I said, there's a little over 200 in the entire world that are actually vetted and skilled in endometriosis treatments. And that's. I mean, when you think about it, that's not very many. And there's such a long wait list to get in. You know, people from all over the world fly in. Another one is a great place is the center for Endo, and it's in Atlanta, Georgia. I mean, I even filled out the paperwork to get another surgery because, I mean, I am still, you know, I'm still battling my disease. And, you know, I was gonna try. I gave myself a year to try everything, and you were there to watch me go through it. I mean, I had needles everywhere. Up and down my spine, long needles to try to help give me some relief of some kind. But it only in places that you.

Wouldn'T think you'd want needles.

I mean, I had it into my pelvic floor muscle. I'm just gonna say that because, I mean, there's pelvic floor therapists that do help women with endo. Warriors with endo. And it gives them some sort of relief because we're in a constant state of. It's just so tight, and we can't relax, and it's always inflamed, and it's always mad at us, and we just don't get relief. And when you think about it, you're always tense, you know, because your body is trying to fight, you know, trying to help you go, okay, okay, Karen, you know, calm down. It's okay. And it never. You never get relieved, but I found, you know, simply, like, listening to music, going outside, you know, if you have to take your mobility scooter, go around the block.

Yeah. You know, find stuff that feeds you.

Yeah. And I mean, I even like to get through Covid. I mean, we rescued a puppy, you know, and she brings me such joy. I don't know what I. Where I would be if I didn't have.

Yeah. She tries to make out with me.

Every night, which is weird, but she's a daddy's girl. What are you gonna do? But seriously, it's just like, you know, that was one of the reasons that got me through, because of Isolation, because I knew I was already familiar to me, this world of, oh, my gosh, you stay at home. Yeah, I stay at home all the time. There's no change for us warriors.

Yeah, I mean, we. We have become. This is one way that I think that endometriotis has affected our household. We have become homebody esque. Like, it's more comfortable to be at home. There's more there, more comfort there.

Well, it's just more peaceful for me. So if I'm having a horrible flare day where I have to use ice packs front and back in my lower pelvic area, I mean, it's the only thing that gives me some sort of relief until it goes numb.

Yeah.

You know, and a lot of the warriors out there are burning themselves. They have permanent burns on their body from heating pads.

I remember we were. We were somewhere and this has only been maybe a year or two ago. And you used to use heating pads all the time.

Oh, yeah.

And only to find out. I forgot who.

Who mentioned it, but it was my pelvic floor therapist. She's like, oh, she. It was like a whole new world opened up. I'm like, all this time. So our body is chronically inflamed. Chronically. And so what we're adding is more fire. You know, that's why it can't get hot enough. Cause our insides are on fire. It feels like someone takes a hot poker out of fire.

And you can actually feel that. I felt that out on your skin before.

And shoves it into our abdomen.

It's like somebody turned an oven on.

And you're constantly hot, hence hot flashes and night sweats. And not just hormones. Our hormones are all out of balance. It causes hair loss. You know, I mean, another reason why I just decided, you know, I had long, beautiful black hair when I met Steven. And, you know, I just felt like I needed to take control over it because I was losing it by the handfuls. And as a woman, we're emotional with our hair. And, you know, it was a way for me to take back what is taken away from me.

I love you.

I love you too. And, you know, I'm grateful that I have a supportive partner. A lot of people just don't.

Well, that's. I think that's some of the education. That's why I wanted to be here with you, to kind of walk through that. Because it's been a journey. I mean, it's been a journey for you, obviously, going on.

It's a journey for everybody. I am fighting for My life.

Yeah.

I'm fighting for my life and trying to find enjoyment in my life, even if it's limited. You know, I don't know what the future holds, but I pray one day that there will be a cure or that there is better treatment options.

Maybe this particular interview will be a catalyst to get things cooking. That would be ideal, right?

I mean, I would love for, you know, the mayor to light up the downtown Raleigh in yellow, and I'd love to get a proclamation to say that, you know, it's endometriosis awareness month, so let's. I'm gonna knock on your door.

Yeah, we got some goals. Yeah, right. Well, look, I want to. With a couple minutes we have left, I want to talk about Indo army because.

As your husband, one of the things that I've seen that has litten you up, right, Is this opportunity to serve other women. You know, we've talked about this before. Both myself and a friend of mine named Rory Vaden say this in a kind of a similar way. I don't know if I picked it up from him or if he picked, like, where he picked it up, but it essentially comes down to this. The ultimate purpose in life is serving the person you used to be, which you do in spades. Right? And I'm seeing that take off more and more with Endo Army. Tell us about Endo Army. Tell us what it does, why it's important, what women can expect that are struggling.

Well, Endo army was born from, like I said, going to Washington D.C. being around Kiana. And she was really. She's like, I just want us. I want to do this non profit. And we didn't even have a name yet. You know, I think we took a vote and I was like.

Indo. You know, we were putting anything but, you know, Endo. And then I was like, dude, where there's one, there's many, you know, And I'm like, oh, Army. You know, kind of. Yeah, Endo army was born. It just makes sense because, you know, you're. You're not by yourself. There's an army of us and we're coming for you.

And all you had to do was wind me up and let me go. I think I got your website up in like three days. Yeah.

You know, I'm like, I almost had to tell you, of course, like, everything. Slow down, slow down, Steven Sparky. But, you know, I'm grateful for that because, you know, you gave us the seed to get it started. And, you know, it hurt last year. It really did. You know, I Was definitely quiet. You know, I went off of social media, and I think I'm not the only one. I know a lot of us felt it in the community because it was just like, man, we were just. I mean, it was getting on news. It was getting published in, you know, papers, and it was like, well, to.

Me, if it can happen one time, it can happen again.

Oh, it will. I mean, I definitely want to. I mean, I still want to go to the, you know, capitol in Raleigh and stand out there. It may not be an army of us.

Something tells me. Something tells me you put something on an eventbrite, you're gonna have what you need.

But again, it's. We will be back and we'll be stronger than ever.

That's right. That's right. Well, here's some things that I've seen Indo army do since I've been around you and Kiana. Indo army has worked to take donations in a way to help facilitate surgeries partially. We talked about that a little earlier.

Well, by, you know, excision specialists.

By specialists, period. Right.

Yeah.

In the field, Indo army has developed essentially what equates to a communication or support group. Indo army has these wonderful bracelets. I think there's a bag of them over here that we normally wear. In fact, I need mine for march. I haven't. I'm a slacker, guys. Right.

Plenty more.

Yeah, right.

That each of these bracelets, obviously, all donations go back to Army.

They're $5. If you'd like to. We're gonna post the link for a paypal account for Endo army. And it's a 501. We have our letter and everything. We are legit five zero one C three. So all donations. If you don't want a bracelet or you just want to donate, we will gladly take donations. Gladly.

Because you know in my heart, if you know me, you know my heart. I'm not going to take money from someone that I know I can help. I would give you the shirt off my back. And people, I've done it. I've literally given the shirt off my back. I will give away whatever it takes to hopefully help someone else. Because I mean, if I can say, like, to my younger self, you know, I can say I'm sorry.

Yeah.

You know, I'm sorry you were treated so poorly. I'm sorry that you had to have so many organs removed. I'm sorry that you were dismissed by so many doctors and friends and family who just didn't understand or didn't want to understand.

And O Army is A group of warriors that have battled this and they're our older generation. I mean, my mom, she's learned so much from me, from being vocal, for speaking up. It's made her want to tell her story. And one day, hopefully she'll be.

On my own podcast.

Yeah, right. Well, obviously we own this live event center and we plan on putting it together to good use to help see if we can't host some events and get some stuff cooking. Help everybody understand where they can find you.

Well, I am on Instagram, so I am scoggins endowarrior or gogginsendowarrior. See? Yeah. And then endoarmy.com we have our own website. And then you can find Kiana Scott in there. And if you feel like emailing me, it is karenndoarmy.com Love it, baby.

Thank you, honey, for coming on here and sharing your story. I know it's. It's not always easy to kind of come out and.

No, because, I mean, it's a lot of trauma. I think a lot of us have gone through a lot of trauma and we kind of hide and it's hard to get out there and repeat our story over and over again. But with that story, you never know that you inspire someone else to share theirs.

I love you.

Love you too.

I love you, precious. It's what we do at home.

Bye.

Bye, guys. See ya. Thank you guys for watching. I hope you enjoyed that little bit of a behind the scenes action for my beautiful wife, Karen Scoggins, who's battled so very much. Now, if you love that interview and you want to do something about it, make sure you check out indoormy.com in the meantime, check out this next interview right here. It'll help.

It's no different if you're experiencing some suffering. You feel like you're in crisis or you're having anxiety, but you're. You're.