FFPLP_Endometriosis1_Real Talk with Endo: Audio automatically transcribed by Sonix

FFPLP_Endometriosis1_Real Talk with Endo: this mp3 audio file was automatically transcribed by Sonix with the best speech-to-text algorithms. This transcript may contain errors.

Kristyn Hodgdon:
Hi, I'm Kristyn Hodgdon, an IVF mom, proud women's health advocate, and co-founder of Rescripted. Welcome to From First Period to Last Period, a science-backed health and wellness podcast dedicated to shining a light on all of the women's health topics that have long been considered taboo. From UTIs to endometriosis, we're amplifying women's needs and voices because we know there's so much more to the female experience than what happens at the doctor's office. With From First Period to Last Period, we're doing the legwork on your whole body so you can be the expert in you. Now, let's dive in.

Kristyn Hodgdon:
Hi everyone, and welcome back to From First Period to Last Period. I'm your host, Kristyn, and I am so excited about today's episode. We're kicking off a series all about endometriosis, and this episode is called Real Talk with Endo. We have Jacq and Emma, and they are both endometriosis warriors, so we are going to hear the real stories from women who have been there. Before I introduce them, hi guys! Welcome.

Emma Maxwell:
Hello!

Kristyn Hodgdon:
Thrilled to have you here. Jacqueline Sullivan is a long-time endometriosis warrior. She is the Director of Partnerships here at Rescripted, and she's a mom of two girls. And then, Emma Maxwell is a tireless endometriosis advocate and Rescripted voice who uses her platform to chronicle all things living with endo. So welcome, ladies! I'm just so happy to hear about your experiences and dive into all things endometriosis.

Jacqueline Sullivan:
Thanks for having us, and thanks for having this conversation. I like, wish this was around years ago, but there's a better future for my daughters.

Kristyn Hodgdon:
Absolutely, we're sure. And that's what we're all working towards, right? I think the whole point of this episode, I think, is just to show like how endometriosis affects so many women, but it's like different in everyone. And we're constantly preaching at Rescripted how everyone's body is different, and you know your body better than anyone else. So I want us to kick things off by asking, like, how has endometriosis manifested in your life? And, like, how did you initially know you had it? And who wants to go first, Jacq?

Jacqueline Sullivan:
You know, in hindsight, everything's 2020. So, when I first got my period, I got it late. I feel like I was like behind all my other girlfriends, but when I did get it, it came, oh my gosh, it was so heavy. So, I have vivid memories in high school of having to check the chairs every time I got up because I would bleed through, and I always bled through. There was just never an instance where I did not bleed through. So I remember doubling up on pads, that have always been like the overnight super absorbent pad girl times two, like full transparency. I like straight-up up have switched to like the diapers at this point, like the, whatever, yeah, like pad diapers. So, it started out for me with incredibly heavy periods. Like I just realized my periods were not like everyone else's cramping was really bad as well. And then, as I got older, sex became very painful. Didn't realize that was like a symptom of Endo until down the road, but I would say that's where it started for me, where I realized, like, something's off.

Kristyn Hodgdon:
Wow, and that's from such a young age, too.

Jacqueline Sullivan:
Yeah, it began in high school. It was just like really heavy, and it affected just how I did life. Like to be that self-conscious in school, I went to an all-girls school, but I remember people being, about this seat, and that was just really uncomfortable. I played sports growing up, and I always had to be careful and take breaks in between whatever. It was just really uncomfortable. It really took a toll on me.

Kristyn Hodgdon:
And did you know it was Endo at that point?

Jacqueline Sullivan:
No, I didn't get diagnosed till I was, I feel like fairly early, considering how long Endo goes undiagnosed. So I was, I wouldn't call it misdiagnosed for a while. But doctors, essentially, the only way to find out if you have Endo is to go in and have surgery. So, different OBs were treating me for different things, basically just to rule them out. So, I was being put on medication for different like issues that I didn't have, so the medicine wasn't working. But I got diagnosed officially at the age of 19. It was stage four Endo. So originally they were like, oh, we might just have to scrape it. But it turned into, I don't remember at this point, but either scrape it, you burn it, or something along those lines, and mine was so bad and it was like really spread. So yeah, I just remember having stage four, and I was told it wouldn't come back, and it was a foreshadow event. I've had 2 or 3 surgeries since then. It never went away for me.

Kristyn Hodgdon:
Sigh. Yeah, it's so crazy. And even that, when, how old were you when you got your first period to 19? Even though that might not seem like a long time, it still is to be like living with something that you don't know what it is.

Jacqueline Sullivan:
I was 13 when I got my first period, so 13, just like staining clothes every month, like horrific.

Kristyn Hodgdon:
And that's on the, I feel like, shorter time period of when people typically get diagnosed. I think it's like between 7 and 10 years that it takes for people to get diagnosed on average. So Emma, what about you? I'm excited to hear more because you do such a good job of chronicling like your day-to-day. But how did it begin for you?

Emma Maxwell:
Thank you. Honestly, everything that you just said, I relate too, so much, which never stops to surprise me because so many of our stories are so similar. I got my period at the age of 13. I actually got it on the bus ride to Washington, DC. We were on a class trip.

Kristyn Hodgdon:
Oh my God.

Emma Maxwell:
And we were driving from New Hampshire to Washington DC, and I remember getting it in the middle of that and being like, I don't know what to do. It was insanely heavy. I would bleed through absolutely everything in high school. I would do the scoot off the chair. I would be the last person to leave the classroom because I knew inherently that I was going to bleed through my clothes. The amount of times that I sported the nurse's sweatpants, so nice. I ended up having my own personal locker to have a set of clothes, extra clothes because I knew that it was something that was happening every month. And then my nurse just started to get annoyed because they were like, you keep taking our clothes. Like you should know better, this is not normal. Wear a thicker pad, do all of those things. And I'm like, I'm bleeding through a tampon, a pad, and my pants within an hour. And again, nobody really seemed to have the answers. I did not know what was going on at that time. From the ages of 13 to 15, I assume that's what was normal because I was always told that I was going to have cramping. That's normal, that it's heavy, it's uncomfortable, that's just what you go through, and you have to suck it up. And at 15, I started to realize that nobody around me was dealing with what I was dealing with. None of my friends had heavy bleeding like I did. I was at the point where I feel like I was going to faint, and it just seemed like it was progressing. So I went to my doctors, they told me, that's normal, that's painful periods or what people go through, some people just have a lower pain tolerance. So they threw me on birth control and cycled me through ten plus different birth controls from the ages of 15 to 18. It was constant confusion. I did get my diagnosis at 20 through an OB-GYN who, by chance, was like, this is what I think you have. And I laughed at him because it was like, no, there's no way that I have that. I've brought that up to my doctors in the past, and they told me I'm too young. And he was like, did you have a surgery? And I was like, no. So he scheduled me for a surgery two weeks out, and I got my diagnosis. He did use ablation, so it did end up making my symptoms a lot worse. Ablation is when they burn instead of excision, where they cut out the disease. I did have another surgery. I had an excision surgery with an excision specialist January of 2023, and I've definitely felt improvement, but it is never-ending.

Kristyn Hodgdon:
And throughout the month. What is the experience like for you? I know, Jacq, you've said that ovulation can even be more painful than your period sometimes. How does that manifest?

Jacqueline Sullivan:
So for me, yeah, heavy periods. I feel like, at this point, I'm, that sucks. It's really uncomfortable. Like I said, I have no shame in my game. I am wearing full-blown like period diapers now because it's the thing that like almost guarantees that I'm not bleeding through. But Emma, to your point, it's, I don't think people that don't have Endo don't understand when we're saying we bleed through a super pad and a super tampon. It's not over the course of the day. Like every hour I'm having to change, especially like first two days. So I just think that's really important to know, like when you're picturing, for lack of better word, but like how heavy it could be. It's every hour bleeding through a super tampon.

Kristyn Hodgdon:
But Emma, I think, sorry to interject, but I think you hit on something really important with saying, like your doctor said, it was, everyone has cramps, or everyone, some people just get heavy periods. And as an adolescent or as a young woman, you don't really know any different. And you're just like, I'm believing my doctor because they're my doctor.

Emma Maxwell:
These are the people you're supposed to trust.

Kristyn Hodgdon:
Exactly.

Jacqueline Sullivan:
But in regards to like where I'm at now, ovulation is far more painful, it feels like. So, I was explaining it to one of our writers the other day. So, ovulation pains, one, that's where that's when I flare up, and we can touch on flare-ups later if we want. But the pain, to describe it, a lot of times my back goes out my lower back and depending on what my lifestyle is like during that time. So essentially, if I'm eating dairy or not on the best diet, my back is going to go out, and it'll probably be a nine out of ten, and I'll be working from the sofa for minimum three days with a heating pad on me. Can't pick up my own kids because it's so bad. And then the pains that are feeling inside are, two ways to describe it; think of an animal balloon, like when they're twisting it, and if you, that's what I'm feeling. That's how I've described it since I was very young, like the twisting an animal balloon, and also when you press a bruise. So when we talk painful sex, it's, if you had a bruise and you pressed down on that bruise, that's the pain that I'm feeling inside when it comes to Endo ovulation, painful sex, all the things. So the back going out, the pushing of a bruise, and the twisting of a balloon is like how I can summarize the pain.

Kristyn Hodgdon:
That's so helpful, though, because I feel like there were probably people out there listening to this who might have one or all of those symptoms and still not have gotten to the bottom of it and be like, what's going on with me? Whether it's just the painful sex or whatever it is, just characterizing it is so important. Awesome, not awesome, that's horrible. What about you as far as just how it manifests throughout the month?

Emma Maxwell:
During my periods, I've gotten to the point where it's progressed to not being able to leave bed. Before my excision surgery, I had a lot of difficulty breathing. I had the back aches. I have pelvic floor spasms that travel from my pelvic floor, up my back, into my abdomen, down my legs, and it just starts this chain reaction of just indescribable pain. I do find it hard to explain the pain to a degree where other people will understand it, but I think the animal twisting, which, like the balloon, I've not heard of, but I do relate to that a lot. A lot of times, it feels like knives being jabbed and dragged.

Kristyn Hodgdon:
Oh my gosh.

Emma Maxwell:
Or barbed wire just scraping, like feeling like my organs are entangled in barbed wire, and it's just either shifting or just not very nice. I definitely felt some improvements since, but I'm still. I do have debilitating pain where it's really hard for me to even walk from my room to the bathroom.

Kristyn Hodgdon:
And how many days out of the month would you say that you experience that?

Emma Maxwell:
My periods last, like the debilitating pain from my periods last now four to seven days. It really depends on how I'm taking care of my body, like you said, like diet, what I'm putting in and around my body, what I've done for activity. Am I allowing myself to rest without guilt? But then there are also those pain days that just they're just there, and I don't really have any rhyme or reason, especially in my luteal phase, especially around ovulation, but I'm still figuring it out.

Kristyn Hodgdon:
Which is just so crazy. I just think it's so important to have this conversation because people that haven't experienced this, myself included, and this is a large part of your month and your day-to-day life. And a lot of us as women don't want to complain, don't want to constantly harp on. I have two other chronic illnesses, i don't constantly want to be like, oh, I'm so fatigued and this and that. But it does affect like how you show up in your day-to-day life and how you feel about yourself, I'm sure, and your mental health. And, like, how does the mental health component come into it all?

Emma Maxwell:
I'm very lucky to have a therapist that I've been working with for a while now, and we're working on a lot of things, understanding that chronic pain has influenced so much more than just my physical well-being. It messes with your confidence. Not really knowing how your body's ever going to react is very anxiety-inducing, and I could be doing all the things right and still have a flare-up and be out in public. And maybe I don't have anyone around me that can drive me home, or I feel like I heavily depend on the people in my life, and I'm very grateful for the support. But it is very anxiety-inducing, and feeling like whenever I do have a flare-up, what did I do wrong? When a lot of times, it's not anything that you did wrong, it's just the way that your body is at the moment. I really lost the connection with my body for a while because I thought that it was fighting against me, and I hated my body, which did not make things any better. So, I'm definitely learning now to mend that connection and understand that my body did not ask for it. It also does not want to be going through it, but it is helping me and doing everything that it can to get through it.

Kristyn Hodgdon:
And I feel like there could be a lot of self-blame, personally, when it comes to chronic illness. Like it's why am I so tired? Or why am I this? Or why am I that? Or why can't my body do what it's supposed to do? Like specifically with infertility? For a lot of people, and at the end of the day, it's you don't have the same 24 hours in a day as like a healthy and well person, and you can't be expected to always be at 100%, and you're holding yourself to a standard that's unrealistic and not giving yourself the credit or grace that you deserve when you do that, or at least in my case.

Emma Maxwell:
Absolutely.

Kristyn Hodgdon:
Yeah.

Jacqueline Sullivan:
I think for me, obviously, the anxiety yes to everything you said, not knowing when it's going to show up, did everything right this month. Why did this still happen? Not knowing how long it's going to show up for, but to touch on just different points since you've covered that, I think. My confidence and insecure, like between the bloating, right? Like, I'm not eating anything that should cause inflammation, yet here I am, like going to Miami, and I look like I'm four months pregnant. This is ridiculous. Sex hurt. Like I'm married, and even before I was married, I was living my best life. And to not be able to do things that I wanted to do that should be enjoyable really took a toll on me as like a woman and like my security as a woman. Like, screw whatever the man thought, I want this, and it doesn't feel good. And then for me, it then traveled beyond that when dealing with infertility. So when I first was diagnosed, they were like, it'd be really hard for you to get pregnant, really hard for you to carry, and both of those manifested several times, several miscarriages, and couldn't get out of my head and couldn't go through either of my pregnancies until probably 30-something weeks when I was like, at least if the baby comes now, I'm okay to go through an entire pregnancy hearing like what a doctor told me at 19, you're not going to be able to carry. It's going to be really hard to carry, coupled with, it was really hard. I did miscarry. It did take me a really long time to even get pregnant, both times. It really was, oh my God, like my womanhood feels really like a punch in the guts of my womanhood. Yeah, it just didn't feel good. Oh, sorry, I'm sorry.

Kristyn Hodgdon:
We're getting emotional over here. It's, no, it's all, that's just like the point I think we want to drive home as it's just so all-consuming, and this is your day-to-day. And, like, when it comes to things that other people take for granted, specifically with, like, infertility or just going about your day-to-day life or having sex or whatever it may be, this is something that impacts all of it.

Jacqueline Sullivan:
Yeah, and I had one doctor. I, again, like Emma, to your point, we trust our doctors, right? I was on surgery number three, and I got a robot. I was like beta for this robotic surgery. And I don't know what's TMI for the podcast, so I don't know if it'll make it, like.

Kristyn Hodgdon:
No such thing.

Jacqueline Sullivan:
The doctor removed a nerve from me down there, so that did a 180 on, they removed a nerve that they should not, it should not have been touched. So to already go through painful sex and then have a nerve removed while I'm trying to heal my body that no longer allows me to feel the things that I should feel, like the one ounce that let's pleasure that I had was removed from me while I was trying to do better for my body, and I was like, was I part of some freaking whacked out science experiment? Literally, it took away all my trust that I had in doctors, to the point that when I was pregnant with my daughter, I will, I was pregnant an hour and a half away from where I ended up moving to, and I still travel to that doctor because it was the only doctor that I trusted after that horrific experience. And again, just to not have that control over your body when you try to do everything right is shitty, for a lack of better, it really sucks. Yeah, it's a punch in the gut, honestly.

Kristyn Hodgdon:
That's so heartbreaking. I know, and we were big advocates at Rescripted of trusting your healthcare provider and everything, but at the end of the day, there are providers out there that are not doing right by women and not steering them in the right direction. And so much of the solution, I feel, is talking about these things and letting and educating people so that they can ask the right questions when the time comes. Both of you, at this point, have been struggling with this for over a decade. What have you learned along the way, whether it's like what helps you physically or mentally, or what would you impart to others who might be dealing with this?

Emma Maxwell:
For me, I think the biggest thing would be to trust your body and to not allow anybody to convince you otherwise, that you don't know your body best because you do know your body best, you're living it. And there are experts out there which are great, but you're an expert on your body. And if you feel that something's not right and the people that you're going to seek validation or to seek help, they're not able to help you see another opinion, see a second opinion, see a 10th opinion, see a 20th opinion, until you find somebody that is going to not only listen but really dig in and try to understand you specifically as a person, someone that you trust. Because I think lack of trust is absolutely something that a lot of people in this community deal with because we have been let down so many times. And again, there are great doctors out there, but there are also doctors that I went undiagnosed for seven years and had so many doctors invalidate me. I still have doctors invalidate me after two surgeries and showing them pictures of my organs being glued together and pulled. I still have doctors telling me that it's in my head and that I should go see a psychologist, and that there's no way that these things could be affecting me, and I'm far more numb to it now. It's still very frustrating, but there are people out there that can help you, and it's just a matter of weeding through the ones that won't, yeah.

Kristyn Hodgdon:
And in your experience, was it an OB-GYN who ultimately helped you the most, or did, was it finding that specialist who really focused on that?

Emma Maxwell:
Absolutely, my specialist. I'm so grateful for the OB-GYN that did perform the surgery, but again, there were a lot of things that manifested because of that surgery, a lot more pain, a lot more adhesions being stuck. He also started me on medically induced menopause after that surgery, and that wreaked havoc on my body. Mentally, physically, emotionally, I was just off the rails.

Kristyn Hodgdon:
Was that Lupron?

Emma Maxwell:
That was Orilissa.

Kristyn Hodgdon:
Okay, that's similar to Lupron.

Emma Maxwell:
So yeah, it was just more the the pill form, and I ended up taking myself off of that because my doctors were like, you just have to stay on it longer. Like, you just have to just push through it. And they said the same thing with the IUD, just push through it, like the pain that you're feeling. Like, no.

Kristyn Hodgdon:
Lupron is like, every year on my birthday, I think about this, and my birthday was yesterday, but two years ago, I was taking Lupron for an IVF cycle, and I cried the entire day of my birthday, like the entire day, and it was completely just all of the emotions and just felt like I could not control any of it, and so I can totally sympathize with that. And then being on it for a long period of time, it's not fun. So you recommend finding a specialist, for sure.

Emma Maxwell:
Yeah. And again, that's easier said than done. I think it's really difficult. I've definitely been to Endo specialists, where they've told me that I don't want to help myself because I don't want to go on hormones. So again, it's finding the best fit for you, and it's a long road, and it can be frustrating and defeating, but there is someone out there. And it just took it took a longer time than I would have liked, and that is the case in this community. But finding an Endo specialist has absolutely given me so much understanding and given a lot more grace to my body because there's someone out there that's, oh yeah, no, it's really bad, and everything that you're feeling is valid. And how can I help to make your quality of life?

Kristyn Hodgdon:
And that's the person that performed the excision surgery.

Emma Maxwell:
Yes.

Jacqueline Sullivan:
Awesome.

Emma Maxwell:
Yeah.

Jacqueline Sullivan:
I think finding a team or a doctor that listens to you, because I, really the doctor that performed the surgery on me, I actually tried to put it out of my mind because it's so traumatic. But when you were saying what you were saying, I was only getting surgeries because I knew I wanted a family eventually. So, I didn't want it to get to the point where it was so bad and so piled up that it would make it even harder to conceive down the road. I was only 19 when I started surgeries, but within that appointment where, I'm like, okay, we're gonna have surgery. After my surgery, he was like, let's put you on, I forget. Oh yeah, early menopause. And I was like, But I'm telling, did you not hear anything that I said? I'm not a doctor, but it doesn't sound like these two go together at all. And I was like, now again here, after seeing what he did to me and then putting that conversation together, I'm like, I felt like such a number. And he was just like checking boxes and giving it to me, but on the flip side, my OB, who did deliver my girls, made me feel incredibly validated and love him. And again, I traveled across the state to go see him because I loved him that much. So, finding a good doctor also for me at this age, after having kids. My nutritionist actually helped me a lot while, and that's where it came down to. But I feel the best I felt, and I still to your point, I'm like, I could eat amazing, and I will still have flare-ups, but I definitely can say I feel the best I have ever felt because I started seeing the nutritionist and honestly, super simple. It was like, I cut out dairy, refined sugar. Easier said than done, but it really has truly, what I put in my body, not medicine wise, but like food is, medicine has impacted me tremendously. And the third thing would be like community. So whether it's just speaking about my story, I was also very vocal about my story on social, and then I became a mom and didn't have any time. So I really appreciate what you're doing, Emma, because, in sharing your story, you really can impact one person. One person can see, wait, this isn't normal. So whether it's finding community in hearing other like in a small way, just one person story, or something like Rescripted where you have an entire community of people where you can bounce back and forth. This is what I'm feeling, this is what's working for me, this is what my doctor said. There's just such a sense of validation and knowing that you are not alone. I hate that there are hundreds of thousands of other women going through it, but I'm not going crazy either because there are hundreds of thousands of other women going through it. And the support that comes from that has been, like, it's really unmatched because not everyone understands.

Kristyn Hodgdon:
Yeah, I always say once you start sharing your story, it's always just, me too, or my sister went through that, or my cousin or my roommate's cousin's wife, you know.

Jacqueline Sullivan:
Whatever it is, or maybe I'm going through it like, Holy cow, I don't think about like, maybe.

Kristyn Hodgdon:
Yeah, I've met people who are like, oh, I've never opened up about that before because I never knew that anyone else had experienced it. Yeah, for sure. And going back to the nutrition piece for a second, I feel like there's such a disconnect, and this is something we really work to combat at Rescripted. There's such a disconnect between traditional medical doctors and the holistic nutrition and any sort of holistic kind of therapy, and it's not even recommended. I remember when I got diagnosed with PCOS, I was literally handed a pamphlet and said, you have PCOS, go see a fertility doctor. And it wasn't even in the conversation, maybe you could go see a nutritionist. It was like the options were birth control or fertility doctor. And so, what if I just wanted to not be in birth control and try to heal my cycle naturally and do things that troubleshoot? I know it's a lot of trial and error, but it does take some times a lot of trial and error. But ultimately, you can find certain things that work for you that just make your day-to-day better. And I wish that more of that holistic stuff was incorporated in too, like acupuncture has helped me tremendously in so many ways. So yeah, I think a lot of women find that really frustrating, especially when it comes to chronic illness. And then there's just so much information on the internet where I also don't want to be told I can cure my chronic illness because that's toxic in and of itself. So there's like this middle ground of finding the recipe, so to speak, like between regular doctors, holistic professionals, and then just like your own gut instinct on what works for you.

Emma Maxwell:
I agree with that completely. Surprised that I didn't, I say excision surgery, but I think that at least was the first piece for me, and now I definitely see naturopaths, I do acupuncture, I do all of these different modalities to help me with my quality of life, and I don't see a nutritionist as of right now, but I've cut out gluten and dairy and processed sugars and different things like that, which I know can be very controversial because, again, it's not a cure, and it's not going to work for everybody, and everybody is so different, but it is something that's definitely helped me tremendously with generalized inflammation and my quality of life and just feeling like I am more me and less, it's just helped me a lot with managing my pain, and my day-to-day. And community is huge, that is the only reason that I learned to ever go to an excision surgeon is because of community and because of the online community. I've learned far more online. I am constantly teaching my doctors about my condition. Community is huge, and definitely understanding that you're not alone and hearing from other people what's working for them and trying that and finding what's best for you.

Kristyn Hodgdon:
What's something that you talked to her about Endo? I'm just curious.

Emma Maxwell:
I'm constantly correcting them on the definition. A lot of doctors say that endo is the endometrium, which essentially means what they've learned is that endo is the lining of the uterus growing in other places, where endometriosis is tissue similar to the uterus, to the lining of the uterus, that is. I've had a lot of my doctors tell me that retrograde menstruation is what's happening. So essentially, every time I have a period, it's bleeding, and it's growing more, and I'm internally bleeding, and that's the reason why I have Endo, where, that's been debunked. That is the Samson theory, which has been debunked. And I'm constantly teaching my doctors about Endo and the definition and how it can affect you and how it's not that, and they don't love it. And I try to do it in the most nice way. Oh, yeah, also, no. And it can be frustrating because it's like, how are you supposed to help me when?

Kristyn Hodgdon:
Right.

Emma Maxwell:
I'm teaching you about my conditions, but.

Kristyn Hodgdon:
I can relate. I feel that way about fertility a lot of the time. I'm like, where's my honorary degree?

Emma Maxwell:
Can I get paid for this? I think something.

Kristyn Hodgdon:
That's so funny. I always like to ask, before we wrap up, what would you rescript about the way people think about endometriosis, either those who have it or those who don't have it?

Jacqueline Sullivan:
Oh my god. I don't know. This is, not sure how can I make this short-winded. I think two things come to mind for me. It's, first, just starting with our periods. There was just such a stigma around me, even having my period, the heavy period, all of that. I hid my period from my mom for the first, I don't know, a few days. Like, why? I have no idea. I probably should talk to my therapist about that. And the second was, honestly, it was sex. And I remember, like painful sex. Again, I don't know, TMI, what's appropriate, but I remember having sex and it hurting and having a guy tell me like or feel like he was the man. And I'm like, dude, this has nothing to do with you. This is not normal. This shouldn't hurt me. And I don't know how to make sugarcoat that in any sort of way, but pain is not normal. Heavy periods and the bleeding is not normal. Painful sex is not normal. And yeah, I really don't know if that answers your question because I still have so many questions about endometriosis, but those are two things that, had I realized sooner, I would have been able to probably.

Kristyn Hodgdon:
But I think it also illustrates that, like chronic illness is a lifelong journey. Like, you don't just like magically give up gluten and never have pain again. It's not something that just goes away. Once you have, you're finished growing your family. That doesn't mean that you're not still dealing with it. That's such a misconception.

Jacqueline Sullivan:
Like it's just a new chapter of it, right? Like, I'm not trying to conceive. I don't want to miscarry. Part of it it's, I'm just like a 37-year-old woman who doesn't want to be in chronic pain all the time. What can I do other than get a hysterectomy? Like, what can I do?

Kristyn Hodgdon:
That's a whole other. Emma, what about you?

Emma Maxwell:
I agree with everything that you just said. Pain is not normal, and especially going through painful periods are not normal. And if it's taking you out of school or work or your daily activities, there's something else going on, and it's important to get to the root of it. And you deserve answers. You're not being overdramatic. You're not looking for attention. You're not crazy. Again, you know your body best, and I think it's important to start really listening to. And there are doctors that do, but really listening to patients and understanding that we don't just want a Band-Aid fix. And I feel like so many things; there's always that front line of, like you said, a checkbox of, okay, let's do this, let's do this. Finding that individualized treatment for every person is so incredibly important. And again, you're just not being overdramatic and you know your body best. So, continue to keep advocating for yourself.

Kristyn Hodgdon:
I love that. I am in awe of you both. And for the record, I never think either of you look any less than beautiful and amazing, and I never notice your bloating, and you guys are rock stars, and just keep advocating. And I think this is one of my favorite episodes I've ever recorded because it's like this is the real-life day-to-day that women are going through and needs to be shared and amplified. Thank you for all you do, and thank you for being here, and tune in to the next episode for more on endometriosis.

Jacqueline Sullivan:
Thank you.

Emma Maxwell:
Thank you so much.

Kristyn Hodgdon:
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