What happens when motherhood and chronic illness collide, and how do we turn that into advocacy?

We explore the hard edges of parenting with endometriosis—pregnancy losses, grief, guilt, and the small wins that keep us going—and how those experiences drove us into advocacy that meets medicine where it starts: in classrooms. Along the way we talk kids’ questions, self‑grace, and building real community support.

• balancing parenting with chronic pain and fatigue
• pregnancy, miscarriage, and fear of recurrence
• children witnessing pain and asking about risk
• guilt, comparison, and redefining “good mom”
• individualized disease, individualized care
• post‑op healing, pacing, and self‑grace
• teaching kids to self‑advocate with doctors
• educating medical students to spot endo earlier
• outdated research vs evidence‑based care
• community support through Endofriend and campus outreach
• many paths to advocacy, from letters to events

Reach out if you have questions—I do get back to you

Chapters

• 0:00 Parenting with Chronic Illness
• 2:05 Introducing Indobattery and Nikki
• 3:45 Pregnancy, Loss, and Medical Gaslighting
• 6:20 Kids Seeing Pain and Inheriting Fear
• 9:10 Homeschooling While Managing Symptoms
• 12:20 Surgery, Healing, and Self‑Grace
• 14:45 Identity, Comparison, and Motherhood Guilt
• 17:40 Teaching Kids to Self‑Advocate
• 21:05 From Patient to Advocate
• 23:25 Educating Medical Students
• 25:45 Outdated Research and Individualized Care
• 28:05 Pushing GI and Primary Care to Consider Endo
• 30:00 Writing Doctors and Seeking Change
• 31:40 Building Community: Endofriend and Campus Outreach
• 34:05 Making Endo a Household Word
• 36:30 Many Paths to Advocacy
• 38:20 The Power of Support and Belonging
• 40:20 Closing Reflections and Gratitude

Transcript

SPEAKER_01: 0:00

Parenting is hard. Parenting with endometriosis? It's a daily balancing act between showing up for your family and finding the strength to show up for yourself. In this episode, we open up about the reality of raising kids while managing a chronic illness, the guilt, the resilience, and the quiet victories that often go unseen. And we ask, how does this experience shape the way we advocate?

SPEAKER_00: 0:25

Not just for ourselves, but for everyone walking this path. After talking to you and we had many conversations, I reached out. And one of the things I did get to do in November last year, I went to that medical school and sat down and told my story to the medical students who were just about to go into the residency programs. And I just wanted them to know that I'm not your typical case. I mean, no one really is. I don't know. Like there's yeah. Is there really a textbook case of endo? But I will tell you, I was so hopeful coming out of that because in my telling them, they would raise their hands, I would tell them my symptoms first and they would kind of raise their hand and I told them that I had heavy bleeding and other things. And one of them raised their hand and said, Do you have adenomyiosis? I was like, ding, ding, ding. I was like, yes, like somebody is paying attention, you know, and they're getting, they're starting to get the correct information. If you look at the information they're getting now, it's 10 to 15 years behind. If you look at endo 10 to 15 years ago, they still didn't know. So I was just able to talk to them and explain to them that every individual case is different. They ask me all the time, Mom, am I gonna have endometriosis?

SPEAKER_01: 1:25

Mom, am I gonna be like this? And I think it would so hard. And I understand why there are some people who have endometriosis that are like, I don't want to have kids.

SPEAKER_00: 1:33

I don't want to pass this on. I open up the card and I just read the first part of it and I just start bawling, like right there in Starbucks. And my husband comes back and he's like, What just happened? He's like, What do you want you crying? And I hold, I just look at him and hold up this bracelet in Starbucks and he's like, What is happening? Like, and I but it was like there is a community that someone cares about indoor. I can I can talk about this with other people because when people find out about breast cancer, right, people know what to do.

SPEAKER_01: 2:05

Welcome to Indobattery, where I share my journey with endometriosis and chronic illness while learning and growing along the way. This podcast is not a substitute for medical advice, but a supportive space to provide community and valuable information so you never have to face this journey alone. We embrace a range of perspectives that may not always align with our own, believing that open dialogue helps us grow and gain new tools. Join me as I share stories of strength, resilience, and hope, from personal experiences to expert insights. I'm your host, Alana, and this is Indobattery, charging our lives when Indometriosis drains us. Welcome back to Indobattery. Grab your cup of coffee or your cup of tea and join me at the table. Today I am joined at the table by Nikki Phillips. Nikki is not only an incredible Indo warrior, but she's also an incredible Indo advocate. She opens up to us in a very vulnerable and real way. She not only struggles with endometriosis, but she's also experienced the struggle of PCOS and adenomiosis. Last time, Nikki shared her incredible story: a journey through pain, loss, and finally healing. Her honesty gave voice to what so many of us live with every single day. Just to catch you up, this is where we left off and where we're going.

SPEAKER_00: 3:25

And I just remember my first one was so painful, and I was telling my mom my stomach hurts, and she was she was like, oh, it's just, you know, gas or something, you know. And the next day I started my period, and I and I felt like none of my other friends had started. But she's I'm gonna get emotional. She's the reason that I advocate so strongly. You know, I want her to have a different experience. And I want my son to know if he ever has a daughter or a wife, that they don't have to go through what I went through. Because at this point, I had had so many horrible periods, so many miscarriages, so much gaslighting, so much just misinformation, and well-meaning doctors, but they're just not educated. I wasn't this appointment, it was about my endo, you know, and maybe POS too. And I said, What do you mean? And he goes, and that's probably what caused all your miscarriages. I just like my jaw dropped and I instantly just started crying. I wasn't there to have that conversation. And my husband comes back and he's like, What just happened? He's like, What do you want you crying?

SPEAKER_01: 4:20

Please help me in welcoming to the table Nikki Phillips. Thank you, Nikki, so much for joining me. I am so thrilled to have you on here today. Absolutely. It's just a pleasure to be here. I'm excited to have this discussion with you today. Yeah. I think one of the things that both you and I have talked about is just because we wanted these kids so bad, I want to talk a little bit about parenting. So this may be a little bit of a trigger warning for those who aren't able to have kids, or maybe this isn't of interest to you, but I think it is important to talk about. The trauma that our kids face and seeing us in pain is so hard. Like I wanted my kids so bad. And our stories are very similar in our pregnancies and post op. And, you know, it took me a little bit of time to get pregnant with my second child, and a lot of what I had gone through before was just as like frustrating, right? And and I didn't enjoy being pregnant. And so I always thought I was a bad mom because I didn't enjoy being pregnant yet. I wanted them so bad. And then when I had them, I was in so much pain. And it just recently, you know, I was going through some dental drama and really was incapacitated, like out, unable to do anything. And my daughters are like, Mom, it's always like this. Are you okay? Are you ever gonna be okay again? And it triggered me so bad because it took me back to when I was in such severe pain. And they were like, Mom, are you gonna be okay? And the worry in their face. And then now they ask me all the time, Mom, am I gonna have endometriosis? Mom, am I gonna be like this? And I think it would so hard. And I understand why there are some people who have endometriosis that are like, I don't want to have kids. I don't want to pass this on. I get that 100% get that. Because it is so hard to look in my kids' faces and be like, I don't know. I hope it's not like this. But if it is, and I and this is what I always tell them, but if it is, I will advocate for you. And you have a mom that's been through this. I know people. So don't you like, oh that's right, mom, you know? Yeah. But even still, it's it doesn't mean that they won't face some of the the traumas and the heartache and the things that are really hard to cope with. It doesn't mean that they're not gonna grieve what it could have been. And I've had to miss out even since with other things. And I think, man, this is this is what I hope they don't remember this. You know, like I hope this isn't what they remember of their mom when they grow up.

SPEAKER_00: 6:42

Yeah. Well, so I used to I used to be a teacher, and then I had my son, and then I had my daughter, and when my son was in kindergarten, I decided to switch to homeschool. So I work part-time now, and then my my job is very flexible. I can work remotely a lot, which is great. But I thought, okay, I can homeschool. And I'll never forget the first year I was doing it. I could sit with both the heating pads and all the pain medicine and not be like judged the way I was maybe with my students wondering. I should want to hide it from my students. And I do remember one of my students going back in the day when I was a teacher, this happens to you every month. Are you okay? Like, even the students like picked up on it, but I was like, I'll be fine. But I remember thinking, okay, I can get I can do this in homeschool, I can tough it out. But it got to a point where there were days where I'd have migraines. That was another symptom I started to have in the last five years. Migraines that were very tied to my cycle and would just take me out for an entire day. And again, since my surgery, those have been better, but not completely gone, right? I still have them, but they're they were definitely tied to whatever was going on with my endo and all my hormones. And so I would have a migraine and it would start to come and I would try to like push through and do school and take care of my daughter and work and do things, you know. And I remember my son coming over and being like, No, you have another headache. I would tell him, Mom has a headache, and he'd say, Oh no. And he would get hit, put the blanket on me and tuck me in and then get his iPad and then just wander. Oh, like he knew it was time to play on the iPad. And he, of course, he felt sorry for me, but to him it was like, oh, I get hours of uninterrupted screen time and I just was surviving, you know? And the fatigue, like when I would have those those hours of just pain where I couldn't get out of bed, like and it I don't I look back and like I don't even know how I did it or if it just got worse over the years by the time I was homeschooling, like trying to parent, trying to just be there for my kids. And same thing. I didn't and then after I had my surgery, I didn't want to scare them, like especially my daughter, like you said, I didn't want to scare her. Like, and so I but I was still very open. My we were very open in our house about um human anatomy and just everything. And so my son, after I had surgery, he wanted to see my uterus because I told him they took it out. And he said, Can I see uterus? And I was like, No, no, they don't let me take it home. Like, did you know that some people do take their uteruses and they're yes, you can request it. Pathology, can they get it back from pathology?

SPEAKER_01: 8:52

I mean, I don't know, but there are some people that save their their ovaries and they like have them in jars.

SPEAKER_00: 8:59

And I was like, I'm okay not seeing you ever again, you ain't uterus. Yeah, goodbye. We we part ways, it's good. Yeah, so this is funny. My my kids have understood as they get older, and my daughter's still kind of learning about it. She's a little less intuitive about that kind of stuff. My son loves science and he loves all the anatomy stuff. And now my kids both say they want to be an excision specialist and they want to do surgery. And I'm like, hey, I'll support you.

SPEAKER_01: 9:25

Awesome. My girls want nothing to do with it.

SPEAKER_00: 9:27

Yeah. I don't know. We'll see. He floats back and forth between marine biology and that, and I'm like, okay, we'll see. But they just saw what a difference it made, but they still see that I struggle and I still have days. I still have days where I'm tired and I have to learn to respect my body. But it's really hard to be a parent because, like you said, I wanted this so badly, and then I felt like such a bad mom when I couldn't function, especially when I was working full-time. I would come home and just crash and like I couldn't do anything. I couldn't be there, I couldn't cook. I just had to like sit on the couch and like or sit on the floor with a heating pad and play with my son with blocks, you know. And I am so happy that I have such a wonderful husband, but it didn't feel like the dream that I had of motherhood, you know, those early years. Like I feel like I'm getting some of that back now. Uh, but it it did those early years, it kind of took that out of me. I just remember I thought, well, everyone's tired. Everyone's tired when they have a newborn, but it just got worse with the pain and then and then worrying if we were gonna have another miscarriage in between the two kids. I just it was all kind of taken away. Like I never I had my first pregnancy and I told my parents and we hadn't really told anyone else yet. And so then we had the miscarriage, and it was kind of like we had to keep it secret. And so, of course, with the next one, I was less secret about it because I didn't want to be isolated again. But it's still like I never got that experience of being able to just be like, I'm pregnant and and just enjoy it. And then it was a miserable pregnancy. It's just that whole journey, that whole like people ask me, you're done. I'm like, Yeah, I'm done with that whole I don't miss that time in my life. Like it felt like it took out of our marriage, like we were just so focused on it. And then to just be dealing with pain and fatigue and just like a constant reminder of my body that seems to hate me.

SPEAKER_01: 11:04

Right. I and I think that's one thing that really for me was so hard in pregnancy was the fact that at any point I could miscarry. Yeah, that was always a fear. I remember being like, I just want morning sickness so that that I know the baby's okay. Yeah. And boy, did I get it. And I got it tempted the entire pregnancy. Like I was so sick, both pregnancies. But I just remember thinking, this is not what it's supposed to be like. Yes, I was excited. Yes, I wanted to experience, and I was so fortunate enough to experience carrying my child. Like I I appreciate that. It wasn't like I didn't, but it was like, this is not fun. Like this is painful, it's taking everything out of me. And you know, when I was pregnant with my second, we were remodeling our kitchen. And so we had no kitchen. I had a three and a half year old. I was pregnant, I was miserable, and I was designing the kitchen. And I was like, who thought it would be a good idea for a pregnant lady to redesign a kitchen when she is like miserable? It was awful. But I just remember thinking, this isn't what I pictured, like the grief of that. And I even look back sometimes and think, I really did grieve the fact that I knew that this wasn't normal, even for me. And I also I, you know, I had two c-sections. And so for me, it was like I knew because my first one was a c-section, and I grieved that I couldn't have a natural birth with her. And now knowing how my uterus was and everything else, it's a miracle I have these kids, yeah, it makes sense why I had a c-section. But then the second one, knowing I was gonna have a c-section, was like, I will never know what it feels like to have a normal delivery. And there's that grief on top of it, although I was excited to have my kids. Yes. So I think there was just so many elements to it. And I and I think what's hard is like those have those moments have shaped kind of how I parent now. And I remember when I was in the height of my pain after my second child, I had zero tolerance, zero patience for my kids. I didn't even really want to sit and play with them because I was in so much pain half the time. And I didn't want them to see me like that. So I would hide. I would literally, my husband would get home from work and I would hide because I was in so much pain and I didn't want them to see the nasty mom. Yes. And I didn't know how to like respond. I was miserable.

SPEAKER_02: 13:24

Yeah.

SPEAKER_01: 13:25

And that's something they don't talk uh people don't talk about that aspect of it of like you want them so bad and yet you feel like a terrible parent.

SPEAKER_00: 13:32

Yeah.

SPEAKER_01: 13:33

Like you don't deserve them.

SPEAKER_00: 13:34

Yes, and it totally caused a lot of guilt. And I even had a moment like maybe this is why I had all the miscarriages, because I wasn't supposed to have kids and I kept pushing it, but I know that's not true now. But I yeah, it it plays mind tricks on you. And I just wanted to be the mom that they deserve. So then when I did homeschool too, I was like, oh, now I get to make up for it. And it was my endo was only getting worse. It's just when I finally had my surgery, it was like, yes. And but since like my since my surgery, since becoming part of the endo community, I've learned to have so much grace for myself, to allow myself time to heal, to allow myself good days and bad days. Like I still have days where I just wake up and I'm like, I don't feel like working out today. All right, and that's okay, because I can choose to have that energy to work out or to be a mom today, and that's all I have in me. That's that's all I have in my tank today, and that's okay. Where I used to before my my surgery last year, it was I would just push through it and then be miserable, and then no one no one wanted to be around me. Right. Yeah. So and yeah. And then I also felt like a bad wife, like because my husband's carrying this burden and not a I wasn't carrying our co-parenting burden. Um, you know, and he's so selfless, like so he would never complain, almost to a fault. Right. Same with my husband. Like to a fault. He would hold something in, and I know it was bothering him, but it's nothing that he ever said or did to make me feel that way, but it was just I just felt that way. Because you just have this vision in your mind. And I I think the world and media and social media does that to us, you know, makes us think we have this vision in our mind. So but it yeah.

SPEAKER_01: 15:09

Well, I also think it makes you feel like less of a woman. Like, and I don't know if y you've experienced this or anyone out there has experienced this, but like the sense that your body continues to throw curveballs your way and is like, hey, foolery, gotcha, you know, like that's what it feels like. And to feel like less of a woman makes you feel kind of like this trickle effect of less of a wife, less of a mom. And it's not accurate. Yes. And even though I have a diagnosis, I know what's going on with me. I know that this isn't my fault. I would never choose this for anyone, including myself. Like I would never intentionally want to not do something with my family. The reality of the disease is that it stops you oftentimes from doing those things, therefore making you feel less than. And I know that we talk about like you shouldn't feel less than, but try to convince yourself that in the moment is like nearly impossible. Right. And so I just people don't understand the full effect of this disease, even if you're able to have kids. And there are those people that, you know, I have interviews with Pasayo Thompson, who has severe endometriosis, thoracic and otherwise, and yet has three girls. So infertility didn't play a part, right? For that. And so I look back at all of these stories and how different it is for everyone. But the resounding feeling is the same, you know, moments of inadequacy, moments of fear, moments of frustration, moments of guilt, and then feeling less than like we all go through these huge emotions. And what I realized is like those emotions could be different tomorrow, right? We have to hold on for tomorrow's emotions, which could be better. Yeah. You know, it's a day-by-day thing.

SPEAKER_00: 16:53

Yeah, it's it's tough. And I think also that there's a part of us that, like you said, we have these expectations and we have these images in our mind of what it means to be a woman. And when these things are taken away from us, when things don't happen to us the way we expect, and even when they are given to us, I have friends that have endo that have never been able to have kids yet or never will. And I have friends that have endo that, like you said, my my friend that told me about Dr. Duke, the one that had stage four and had to go back three times. She has three kids, she had them back to back, you know, and they're all teenagers now, but you know, same thing. And I think we we compare ourselves even within the endo community, yeah, you know. Well, she can do this and she can do that. And I think like it goes back to what I said about that girl in high school. Like, well, I don't have it that bad, so I shouldn't feel this bad because I'm not that bad. And we play those mind tricks on ourselves about just comparing ourselves to people who don't have endo and then two people who do, and it's so individualized. Like what you can do, what affects you, what triggers you, whether it's food or activities or whatever environment or just how your own body is, it's gonna be different than mine, you know. And we we can't compare ourselves to other people, even within the community. And that's hard. And I lead a support group now, and that was some a discussion we had just with the last one about we all are on different pages. We all have endo, but we all have it differently. And it's such an individualized disease. I wish more doctors understood that.

SPEAKER_01: 18:13

So you're right. If you find a doctor who puts you in the same category as every other patient they see, it's probably not going to be the best doctor for you because you are so individualized in your disease and how it affects you and your life and your body. And and that's why I always, you know, I I tell people about a lot, is they told me just, you know, similar to what you said, was well, it you can't get pregnant because of X, Y, and Z, or you can be so you can't have endo because of X, Y, and Z, right? Well, that doesn't necessarily ring true because you're so individualized. Like it's going to affect your body differently. I mean, if you think about endometriosis and the way that it is the way that the lesions appear on everyone, it is in different locations for everyone. Yeah. In different various forms.

SPEAKER_00: 19:01

I've never met that had the exact same met anyone that had the same locations as me. Not one. And I've talked to hundreds of women with endo now, and not one of them has had the exact same locations as me.

SPEAKER_01: 19:10

So no, there's no roadmap for it, right? And so I think as a community, that's something I feel like we could be better at. It's not comparing ourselves to others. Our story is still significant, it's still valid. What we've walked through is still traumatizing a lot of times. You're still important, your story's important. The way that your feelings and your emotions, those are all valid and important. And no one deserves better care just because their story is worse. Like everyone deserves quality care, quality providers. That's just the reality of the disease, is like we can't, we can't do that. It's it kills our it steals our joy, right? Yeah. Comparison steals joy.

SPEAKER_00: 19:56

And I think that's true of a lot of chronic illnesses, right? But it's particularly with endo because it is so individualized. But that was another thing as a parent, too. I wanted to model for my kids that you can talk to doctors, you can empower yourself. Like you don't you can come with education information and you can continue to go to doctors until you find the one that will listen to you and get you the care that you need. And I just wanted my kids to know that. But also, if they did ever become doctors, that they would listen, that they would care and be open to the individualized patient and see each patient differently. I know that, you know, that that show house or whatever, you know, like Dr. House or whatever. That yeah, it was years ago. But it it we're not all that crazy case, you know, but it sort of feels like that because we're all so different. And so I just wish that doctors would almost think that way in a little bit. But it's he's also solving cases that are just the rare case. We're common. Like this is not a rare disease. Like you're thinking outside the box when really you need to be thinking inside the box. And so I don't know, that's just my my two sensitive doctors that I could talk about that.

SPEAKER_01: 20:55

Well, I mean, you you have a lot of experience with that, so that's probably the reason why. But also, I think what's you know, we talk about having kids and we talk about our journeys, but this ultimately led you into a space of advocacy. What are you doing because of your journey? Because this it propels us a lot of times. You know, our what we've walked through has shaped what we want to change. And I know that you've been working a lot on that. What are the things that you're doing for your advocacy?

SPEAKER_00: 21:25

Yeah. So I uh after my my surgery, my my two-week post-op, I met with Dr. Duke again, and he was kind of went over my surgery and my results, and I was just blown away by the information, but I was angry. I was motivated. I was like, this is not okay. And I went from two weeks before, you know, just the day before my surgery, thinking, what if I don't even have it? to okay, I'm doing something about this.

SPEAKER_02: 21:46

Right.

SPEAKER_00: 21:47

I don't I mostly did it for my daughter. I just looked at my husband and and my son too, because like I said, you know, yes, this mostly affects women or whatever, but this cannot be her life. Like I she might, she's likely to have it, like there's no getting around, she might not, but the world can be different for her and and research can catch up. And so I on that drive home from the um, because we live about two hours from Dr. Duke's office. Um, and so on that drive home, I was talking with my husband who works at the medical school at the University of Idaho, and I said, What do they teach on endometriosis? Now he teaches, he kind of oversees the mind, brain, and behavior blocks of the neuroscience side of it. So he doesn't oversee that class, but he was able to have access to the slides and the information. And so we got home and he went, looked it up, and pulled it up, and it was just one sentence, just one sentence or about endo and one sentence about how to treat it. And it was the, in my opinion, and again, I'm not a doctor, the inaccurate definition of what causes it. Um, you know, it was that old retrograde menstruation theory. So I'm sure people who listen to this podcast know about that. And so it was first of all, it was inaccurate, and then it was, and the treatment is hormonal birth control or other, you know, or listen that kind of stuff too. Right. So I I was like, and after I just knew in the two weeks that I had my surgery, I'd been listening, I think, to your podcast and other ones, and just reading everything I could on endo because I knew that I came out of the surgery having it. I just didn't know much about it. But after I came home with more information about my results, and after listening to this for two weeks, I was and this, like all I did because I'm sitting in bed, right? It's a great podcast, reading so many articles, asking so many questions, and I was just taking notes and I was just motivated. I was like, this is unacceptable. I was like, I would like to come talk to them and correct them. I love that. Like, I'm not a doctor, but I'm gonna do this. Like, this is unacceptable. And um, and maybe I could get Dr. Duke or other specialists, and so and I think I I just kept listening to podcasts, just kept researching, just kept reading articles, getting any hands on any information I could. And I found Nancy's Nook. So many of you know about that. Um, and I think with your podcast, I had a question about reaching out to your congressmen and people they're legislating for changing, you know, rules on how research is done and just advocating for research and diagnosing and kind of overseeing all that. So I think that's how our conversation started, but really it turned into this whole thing because I was like, oh, I'm just gonna write to Congress people, I'm gonna figure out how to get involved on the legislative side, which quickly turned into no, I just wanted I want to talk to doctors. Like that was kind of where my heart fell. And so just after talking to you and we had many conversations, I reached out. And one of the things I did get to do in November last year, I went to that medical school and sat down and told my story to the medical students who were just about to go into the residency programs. And I just wanted them to know that I'm not your typical case. I mean, no one really is. I don't know. Like, there's yeah, is there really a textbook case of endo?

SPEAKER_01: 24:36

I I don't know. Like, I mean, there's definitely consistent cases of like if you have bad period pain, that's the number one indicator. Like you should and my and this is what I always tell people like assume it's endometriosis until told otherwise.

SPEAKER_00: 24:50

Yeah.

unknown: 24:51

Yeah.

SPEAKER_00: 24:51

But I will tell you, I was so hopeful coming out of that because in my telling them, they would raise their hand, I would tell them my symptoms first, and they would kind of raise their hand and I told them that I had heavy bleeding and other things, and one of them raised their hands and said, Do you have adenomyiosis? And I was like, ding, ding, ding. I was like, Yes, like somebody is paying attention, you know, and they're getting they're starting to get the correct information. So the reason that they had that information on the slide was because of course doctors have to take board exams, right? They have to, they have to answer it based on the research. Research is 10 years behind, you know, it's not, there's not a lot of research. If you look at the information they're getting now, it's 10 to 15 years behind. If you look at endo 10 to 15 years ago, they still didn't know. So I was just able to talk to them and explain to them that every individual case is different. And if I remember saying at one point during the discussion, I said, if you have a girl who comes into your office and she's a teenager and she's having some really severe gastrointestinal issues and you're thinking IBS, it's probably not IBS, it's probably endo. Look into that first. What I didn't know was there was an actual GI doctor in the back sitting there watching me give this talk. And I and he was there for the next session that the students were gonna do. And I was like, well, maybe he learned something that day. I don't know, you know, but I just I think there is a movement in the right direction. And I think it's because of people like us patients that are reaching out and educating doctors. I I wanted them to know before they went into residency that they're gonna see some of these symptoms, they're gonna see these things and not to just assume sort of like the Dr. House thing that it's some crazy out there. It's probably endo. It might be a rare form of endo, it might be thoracic endo. But anyways, I just wanted them to know that. And so that was one thing I did was reach out to the medical school. And I plan to do that every year. I would love for you know a doctor to come join me, and that's the hope as well. But just the fact that they were willing to have me come in and listen to my story, and they were so grateful and they learned a lot because they can only learn so much. And some of them just looked at me when I was telling my story, like their eyes got big, and they just they couldn't believe some of the stuff. And to me, this is just my story. Like, I don't even think it's that bad. Like I've heard worse. And I told them that. I was like, this is just kind of an average story, but they were just floored with how much I had endured um and put up with, and they had empathy. And I was like, okay, you guys are the next generation of doctors. And it's not that the previous generation didn't care, they were just ill-informed, lack of information, misinformed. And so if we can keep moving in that direction. So that's one thing. Another thing I did was I wrote a letter to my previous surgeon, my previous OBGYN, the one that did my first surgery, I've not heard back. I'm because we live in a smaller town and there's a kind of a main OBGYN office that, and there's two towns here that they kind of oversee all patients that would probably present with these things, and they would send them to these doctors at this OBGYN office. And so it, yeah, I haven't heard back. I'm hoping to reach out again, maybe just say, hey, if you have any questions, I'm here. And I I don't want to do it, I didn't do a letter that was like, you were wrong. I wanted to say, hey, I've learned some things. I would love to sit down and talk with you. And here's a great doctor you can refer patients to if they're having some of these symptoms. Because OBGYNs are great at what they do, right? They are great at delivering babies, right? Um, but endo is a different beast. So and so I just wanted her to know that. And I I tried to do it the most like respectful way that just said, Hey, I've learned so much and I want you to come on this journey with me, and I want to help other women, but I haven't heard back. And so I don't know, you know, that's one of my concerns. I don't know if there's just a lot, if there's still some pushback, doctors don't want to change, and I don't know why they wouldn't. Um, but the new generation seems to be hopeful and open. And so another thing I've done is I've started or helped start a nonprofit group called Endofriend, and we do support groups and care packages for people dealing with endo. Um, I've also connected with Wendy Bingham um at Extra Pelvic Not Rare. Love Wendy. Yes, she's the best. I love her. I'm hoping to partner with her and Washington State University. I reached out to someone I found out there that she oversees all the sororities on campus.

SPEAKER_02: 28:52

Yes.

SPEAKER_00: 28:52

Yeah. Target audience, right? And so we're gonna do an endo walk and just put up informational things that from extra pelvic not rare and put up information so that this target audience, like if I would have known this information in college, it would have oh my gosh, my whole student teaching experience would have been different. My first couple years of teaching, I wouldn't have hopefully. I mean, we don't know. I still maybe have had miscarriages, but I would have gone through it different set of eyes. I would have understood and not been so grasping at straws. And so I just want that for the next generation. I of course I want it for my daughter, but I am so passionate about it now that I just want people to be like, endo is a household word now. It's not some crazy thing that the one girl on your high school color guard team had and nobody else has it. Looking back, about three or four of us on the color guard team had it because there was about 30 of us. Right. So and I was one of them. I didn't know.

SPEAKER_01: 29:43

You're one of them. You drew the short stick. Yes.

SPEAKER_00: 29:46

So and maybe more. I always say it's probably more. We just don't know because those are the ones the one in 10 statistic is who's diagnosed. So so yeah, so I'm working on those projects too and just connecting. I have a heart for advocacy, I have a heart for educating. Not just doctors, but potential patients too, that they could um understand that this is not normal when you're it's not normal to have that much pain. It's not I do have friends. I would have friends that just said, Oh, I don't even take Tylenol and I have my period.

SPEAKER_01: 30:14

Like, what's not like what is a normal period? I don't know what that's like. I've never had a normal period my whole in my entire life. I never had a normal period. And so someone's like, What is a normal period? I'm like, I don't know, I've never felt one. I I couldn't tell you. I know what it should look like, but I don't I've never experienced it.

SPEAKER_00: 30:31

And I do have a friend too that she told me she got diagnosed with endolaster because I've talked to her about it and she went and had surgery and found out she had endo, but she goes, Well, I I I've always had painful periods, but my sister never did. And I just thought that was just my lot in life. But she didn't have any of the other symptoms except for sort of infertility. That was it. She just had pain, she didn't have any head and bleeding, like nothing. Just just you know, painful periods that she would take. And and she ended up having stage three endo, you know, and she's struggling with some infertility. So it's just yeah, it's it it looks so different in everyone, and that's what I want women to know. And I would I love the stuff that extra pelvic not rare has because it teaches you that it's more than just a reproductive thing. And and that's what I want to do. So I just and and there I think there are other things, but that's kind of my big projects in focus right now. So on top of homeschooling and working part-time, yeah. Someone asked me, is this your third job? And I said, Yeah, I just do it.

unknown: 31:26

Yeah.

SPEAKER_01: 31:28

I think what's interesting, like I look back and I'm like, endometriosis has become it it became such an identity to me because all I knew was pain, all I knew was like what it was doing to my body for the longest time. That now my passion, that identity turned into my passion because I don't want someone to have to go through that being their identity for so long and being the and not having their life centered around this disease, whether you were gonna start your period or whether you know you were gonna bleed through pads and tampons. I was talking to my husband the other night about this, about how much I was bleeding and for how long we were just thinking about it. We're like, I the we were lucky if I was off my period for two days a month towards the end, you know? And so I think it became such a big part of our everyday lives that now that I'm not experiencing that, yeah, it turned into my passion to prevent others from experiencing that. And so I think that's probably why for us it's become such a huge passion. But one of the things that you had talked about is how we ended up talking, yeah, was the legislative piece of this too, and that is important. And if that that drives you, Dana Bowling did an episode with me, and that's episode 71. Pretty sure that's about that. Yep. Dana Bowling has an amazing insight on this, and she continues to fight in New Jersey. And so if you are interested in learning more about that, go back and listen to episode 71. There's a role for everyone to play in advocacy in the sense that like you don't have to give everything to it. But uh if you want to make an impact even in the little ways, you can do that. But this community is one that is unmatched. Like you meet people that you never thought you would, and then on top of that, you meet people that you have such a deep connection with, and you don't even have to say a lot. It's interesting, like you don't have to know each other prior to talking, and yet you will almost instantly connect because there is that deep-seated experience that has shaped and molded the way that you live your life. And so I I mean that's kind of what happened with us. And I'm so thankful that we did cross paths and that you did reach out to me. And I always encourage people, you know, reach out if you have questions. I talked, I talked to people, I talked to the experts. I want to ask them your questions because you matter, your voice matters. And so that's why I'm so thankful that you did reach out and that we can become good friends.

SPEAKER_00: 34:01

And for anyone who's listening, Alana does get back to you. She really does. Like I was shocked. I remember like I had texted you or something, or emailed you on the it was the address that was attached to the podcast. And and then like the next day you got back to me, maybe even the same day, and I would looked at my husband and I said, She got back to me? Like I just never in a million years, you know, thought, and that was kind of the beginning of it all. I was like, okay, so this is a community I can join. And another thing was the reason why I did the endofrine um one that we just started last year was because when I had my surgery, um, or actually when I went to the initial appointment to sign up for surgery, they sent me home with my folder with all the information in it. And in there was a handwritten note and a little bracelet from an a girl named or a woman named Alicia, and I'll talk about her. She's she's actually the founder of Endofriend. She's kind of the brains behind it, and she's great. But she wrote this handwritten note to me, and we stopped at Starbucks. I remember on the way we left the appointment, we stopped at Starbucks before we hit the road to get home because like I said, we live two hours away. Such a Washington thing to do is stop at Starbucks. Oh, yeah. I mean, or local, if you know the local coffee shops, yes, there's lots of local ones too. But if you don't, you go to Starbucks. So yeah, so we my husband goes up the to order our drinks, and I just sit down in a chair for a second and I open up the card and I just read the first part of it, and I just start bawling like right there in Starbucks. And my husband comes back and he's like, What just happened? He's like, What do you want you crying? And I hold I just look at him and I'm holding this bracelet in Starbucks and he's like, What is happening? Like, and I but it was like there is a community that someone cares about endo. I can I can talk about this with other people because when people find out about breast cancer, right? People know what to do. They they step in, they make meals, they help you with chores, they do all these things and you go through treatment. And technically, when you have cancer, you pretty much have it the rest of your life. I I understand that. But endo is you really do have it the rest of your life. Like even if you get treatment and have surgery, you're still dealing with either comorbidities or um pelvic pain or whatever, like the anemia. I'm still fighting some of that, like trying to get that back on track because I'm anemic and um no longer a totally anemic, just borderline now, you know. Just all those things. I someone wrote me a card, like they didn't even know who I was. I can talk to someone about this. I'm not alone. Like this is a local person that has this and cares about me. And so I reached out to her, and that just started another friendship. And and that's what started. Like between your podcast and her cards, it was like there's a community for this, and and it's like you said, it's unmatched. And and it's growing because if you just talk to people, people that like um I'm actually doing a Zoom bathon to raise funds for endo friend, but also just to raise awareness. And the lady that teaches my Zumba class, I just approached her one day because she knew that I had taken a break from class because of my hysterectomy, and I came back to her and said, Look, I have endo, and I would love to do like a Zoom bathon and raise money and worse. And she says, Yes, how can we help you? And she reached out to the Parks and Rec department and they gave us the gym for free, and they're just gonna let us use it. Like these people don't have endo, but because people are talking about it more, you know, it it is it is, in my opinion, just as common as breast cancer, but and almost more so because breast cancer is one in eight in the lifetime you might be diagnosed with breast cancer, but endo is one in ten women are already diagnosed. Right. Like now is it that's a different when you think about it statistically different like and so and you deal with it the rest of your life, and so it's just so much more impactful, and it probably is higher than one in ten, but that's just the numbers we have now, you know. Right. But yeah, and so I just so I I did I'm doing the Zoom bathon, so yeah, I kind of forget all the things I'm doing, but and like you said, there's a place for everyone. You could organize a Zoom Zoom bathon, you could write cards, and that's what I the girls in our support group that come, I say you don't have to do all the things I'm doing, you just want to write a card, right? Just talk to people, just wear, just wear a shirt that says endo on it, you know, and people will ask questions, and that is enough, you know, like that's all we need. And so you don't have to do all the things. Luckily, I do feel like I am privileged and blessed to work part-time and to homeschool my kids. And though my kids were, well, especially my son was difficult, maybe they're easier to manage now. And I have time in my life and flexibility to do all these things. And I feel like because I do have time and I am healthy enough now to do them. If you'd asked me this a year or two ago, I would not have been healthy enough to do any of this, but I I can, and so I do.

SPEAKER_01: 38:25

And so and it's important to have those people surrounding you because I mean there's you can't convince someone or talk to someone who has not experienced this to understand you the way that someone that's walked through it can understand you. And so that's something that I have taken away. I have lifelong friends now because of my angry uterus and my angry pelvis, you know. Like I have lifelong friends, and I and I'm so appreciative of that. If I have to go through something like this, I would rather do it with some amazing people. And that's why I'm so thankful that you and I connected and I get to do this with you, and we get to do our advocacy together and continue to feed off of that. And so, Nikki, thank you so much for taking the time to just tell us your story and to lend yourself to this community in a way that I know will be impactful to so many people. You are making a difference, and you sitting down with me and just pouring your heart out in vulnerability is changing the narrative of endometriosis and periods and PCOS because we're talking about it. And that's huge. So thank you so much for taking the time and for doing what you're doing. We need we need more Nikki's.

SPEAKER_00: 39:39

Well, like I said, there's the thank you for having me. I I always tell people there's a couple things I'm passionate about. One is homeschooling, but also now endo. And so I I will talk about endo. I feel like when somebody says endo, I and they ask me about it, I say, I thought you'd never ask. And and I get people that send me their their friends, their friend's daughter's phone number because I've just post stuff on social media and I just talk about, but that's that's how things are changing, and that that's how things will change. And so I'm happy to talk about it anytime. And think thank you for our friendship and for getting back to me that first time I emailed you and giving me next steps, like giving me a place to join the community. You know, that was that was really impactful at a time. It was so healing for me, undue 28 years of you know, trauma.

SPEAKER_01: 40:22

I'm so glad that I that this platform has allowed me to do so. I'm not always on the ball quite like that, but I do try really hard to get back to people. But thank you again so much. And I'm looking forward to what the future has for us as we continue to advocate and we continue to explore different ways to help other people walking through this journey. And I'm just very appreciative of this community as a whole. And until next time, everybody, continue advocating for you and for others.