episode 197: reclaiming your body after chronic illness with emma jack

Sep 30

In this week’s episode, I sit down with my friend and colleague Emma Jack, a physiotherapist, coach, and endometriosis warrior. Emma has spent 25 years navigating life with undiagnosed endometriosis, and she’s here to share her incredibly personal journey in hopes that even one person who is struggling with this disease (or any undiagnosed condition) feels seen and supported.

From the struggles with misdiagnosis to the relief she found through excision surgery, we dive deep into how this chronic illness affected every part of her life—from her body image to her relationship with food.

Emma’s story is about resilience and self-advocacy, and it’s filled with lessons that will connect with you—whether you’re dealing with chronic pain, frustrated with medical care, or struggling to trust your body again.

Here’s a sneak peek at what we discuss:

How years of undiagnosed illness can impact your confidence, body image, and relationship with food
Emma’s journey from gaslighting herself to finding answers—and how she reconnected with her body
The unexpected ways her surgery has given her back her freedom (and her jeans!)
Why it’s crucial to trust your own body and advocate for your health, even when doctors don’t have all the answers

I’m so excited to share this conversation with you. There is no greater feeling than being connected to someone who has been through what you’ve been through—and that’s what this episode is all about.

Emma Jack is a certified sport and orthopaedic physiotherapist and owns her own private practice, Press Play Physiotherapy and Pilates in London, Ontario and she's travelled the world as a lead therapist with the Canadian Women’s Hockey Team.

While these accomplishments bring a sense of pride, Emma also acknowledges that they also contributed to feelings of intense anxiety, chronic stress, numerous health issues, and deep burnout.

Emma has since transformed her clinical practice and life in recent years to ensure that her achievements no longer define her. She now dedicates much of her time to working as a certified coach, helping other women in healthcare show up fully for their lives and careers in a way that feels authentic, sustainable, and, most importantly, fun!

197
[00:00:00]
jordana: Okay. Hey, everyone. Welcome back to the diet diaries. Today's a guest episode. I don't do many of these anymore. So I'm super excited to have someone here that I think you guys will learn so much from. Um, I'm with here with Emma Jack and she is a friend and a colleague. She's a physiotherapist. She's Canadian, which means she's a physical therapist and she's also a coach.
Um, And she is also an endometriosis survivor and warrior and Emma and I have known each other for several years. Um, we connected through another mutual friend, Shante Coffield, the movement maestro. Um, and I asked Emma to come on to the podcast and share her experience moving through endometriosis, which I have personal experience with because my mom had it and dealt with it.
And maybe that'll fold into our conversation, but so much of what Emma has shared of her own journey on her social media. really spoke to me and the way that a chronic disease like that can impact your body image, your relationship with your body, how you think about yourself, your relationship with [00:01:00] food.
So I reached out to Emma and she was willing to come on and talk with me and share her experience with you guys. So that's what we're here for today. Hi, Emma.
emma: Hello. Thank you so much for having me on.
jordana: I'm excited to be here. Emma was supposed to come on like a month ago, but then I got Joey and my brain literally could not handle one more thing. So we rescheduled and now we're finally here and doing this. And so I'm excited that it's happening.
emma: you know, it's all divine because probably at that point, like I was still pretty early on post op, um, from my excision surgery. And so like even a month later I can look back and be like, oh man, like I would have been pushing myself.
jordana: We'll do it. Yeah.
emma: divine timing.
jordana: Yeah. Yeah. Um, so let's, let's just kind of start with, I think our, our conversation will end up folding in a lot of different things, but I'd love to hear about your experience. With endometriosis and if you can explain what that is for any women who aren't familiar and what it was like for you [00:02:00] To go undiagnosed for such a long time what that was like in your body and then let's see Yeah, let's kind of start with that and then we'll go from there.
emma: Yeah. So endometriosis kind of looks and will present In so many different ways. Essentially, it is, um, endometrial like tissue. So the cells that are that make up our uterus. Um, so not uterine tissue, but cells like that tissue growing outside of your uterus. Um, and that can show up in many different places, like from our thoracic cavity to our organs.
Um, it's not just, I think this is a like misconception I actually had. I thought it was just sort of within our reproductive system. Um, and so you can get these lesions outside of the uterus that, um, produce a lot of inflammation [00:03:00] like a crazy wild host of symptoms.
jordana: Mm hmm.
emma: Um, I truly just got diagnosed this past January. So January of
jordana: it was that recent. Okay.
emma: Yeah. And that came after literal years of You know, in and out of specialist's office, and, and, um, obs gyne, GI doctors, urologists, all trying to figure out why I had these symptoms. And so once I got the diagnosis of endometriosis, and once they were able to see where all of my lesions were, literally every symptom I had been dealing with and struggling with, Since puberty, all of a sudden, like, it just all made sense. Um, and I think I had really been telling myself, like, because the symptoms at the time seemed like it was a bunch of different systems. You know, [00:04:00] I, I, when I turned 12, I was having all sorts of like GI issues, constipation to diarrhea and like massive bloating and it sort of, it came on randomly. I had had, I had been like, Pretty good up until then and then all of these symptoms came on so I thought I had like, okay I have these GI issues and eventually I was diagnosed with celiac disease So I was like, okay, I have that and then I had these really painful periods like intense intense cramping couldn't like walk or stand like just Horrible, I would get migraines Around ovulation and around my period so I would have these that.
And then I was getting, you know, also just like these random things. I, I would get like the hiccups all the time. I, I would get like really deep esophageal pain. Um, and I just kept on [00:05:00] thinking, like, why does my body not work like other people's bodies? Um, it just felt like I had all of these. Signs and symptoms of dysfunction, and I think that really, yeah, like, it, it does create a bit of a narrative, um, of who you are and what you can tolerate, and I really labeled myself a bit of a delicate flower, um, like I, my body just couldn't handle much, um, and so getting the diagnosis in January, as much as it was, You know hard.
It was actually like so relieving.
jordana: To have an answer.
emma: yeah I was like wait, all of this is valid step
jordana: Yes.
emma: Because with years of going to different doctors and them not really having answers and not getting solutions I think I almost started to gaslight myself of thinking like oh It's not that bad. Or is that really real?
Or like, yeah, like,
jordana: this? Yeah.
emma: [00:06:00] exactly. Like, I really, I really did, you know, get into that role. And then the doctor who actually gave me the diagnosis, I think he allowed me to understand the severity of what I was dealing with. And I'll never forget, he literally said to me, like, honestly, looking at your imaging, I'm shocked you even Walked yourself in here today, and I was like, right
jordana: Thank you.
emma: Right, yeah, I mean I feel that intuitively, but I just have been pushing myself so much for so long Because they didn't they were like and we don't really find anything I would get all of these tests and diagnostics man the number of endoscopies and colonoscopies I have had Where they're like, looks pretty good.
You know, they would kind of stretch my esophagus, hoping that that would help and never did, but that was the only thing, that was the only solutions they were providing. And so it was, it [00:07:00] was very relieving, but sort of started then a whole nother journey and battle. Yeah. I'm
jordana: So how old are you now?
emma: 37.
jordana: Okay.
emma: it's almost 25 years.
jordana: years. 25 years of dealing with this. Yes. End. Right. So you mentioned like from the age of 12 dealing with this pain and, and, and bloating and having this really tough relationship with your body where your body's like not doing the things it's supposed to be doing, not showing up for you.
It's impacting your quality of life and your freedom and autonomy to do the things you want to do. Like what was that experience like kind of like in relationship to Like your body and your belief in yourself and your confidence and that side of things.
emma: Yeah, I think it really became somewhat self limiting. Like, I became very fearful of food. Um, you know, a lot of the, [00:08:00] the providers I was seeing and, and, and naturopaths. I was seeing to help, help me with this issue, you know, we did elimination diets and I was avoiding dairy and gluten and all of these things.
And one of the like most distinct memories I have is like stopping wanting to go to birthday parties because kids birthday parties were so centered around food. Um, you know, and it was all I could see when I would like look out at the world was everything I couldn't have or like, you know, was wasn't safe and like I didn't want to go to the birthday party because I can't have the cake and I can't have the chicken fingers and it's all dangerous to me, you know, and so I really started, I think, pulling back a bit socially.
Um, and. I think just even the way I was fueling my body didn't give me a lot of energy. Like, I just remember, like, I would go to school and come home and just, like, be on the couch. Like, it, [00:09:00] like, there really wasn't a, a, too much of a life. I grew up doing gymnastics and dance, so two very aesthetic focused sports.
I do remember, too, like, having a sense of pride around Like, well, I'm like not really eating that much. And like, it is a time where your body changes a lot, but my body didn't change a lot because I wasn't fueling a lot. Or I was fueling, but I was fueling with nuts and seeds and rice milk. Right?
jordana: Right. Because that's what the doctor said. You need to eat, or not eat these things or eat these things in order to manage symptoms or figure out what's going on.
emma: And I think there was also a bit of, yeah, it was definitely a fear of food because food had made me feel really terrible in the past. You know, eating certain things. did cause a reaction. And, and so there were certain things that I've actually had to work really hard at like introducing back in and like telling my [00:10:00] body like it's safe.
I can tolerate this because I think so much of my story was like, I won't be able to tolerate that. I can't have that. That's going to make me feel X, Y, Z, or do ABC to my body. And, and it has been It's been great introducing more variety and more things back into my, my plate. But I've, I, you know, the, the work, the mental, emotional work of that has, has been work.
jordana: Yes. It's so interesting and not something I think that you'd think of on the surface, like And it's like a medical condition like this would impact sort of your relationship with food in this way, right? And some of it, it sounds like. You know, you knew that there were certain foods that made you feel badly, which is helpful.
But then also, right, doctors are recommending, don't do this, don't do this, don't do this. And it's like, well, is that really helpful? Is that really impacting me? And then the fear around it and [00:11:00] being able to move past that, right? And then you mentioned, I wasn't really eating that much. So my body wasn't growing and changing.
So I was smaller and thinner. And that was really. desirable for those sports and activities I was doing, right? So like, how was there anything, or what, what was sort of that experience like, and I guess, was there anything that you kind of carried with you, like, past sort of, I guess, like, that high school time of, of those competitive sports and your body being where it was?
emma: Yeah, honestly, I think it's only probably been in the past Maybe a decade that I've been working on my relationship with food. I would say up until my late 20s. I still had a very fearful based mentality around food and and how it was going to, you know, potentially hurt or harm me. Um, and it was actually working.
I was working with a practitioner [00:12:00] where things weren't Were really restricted because again, my GI issues never went away because we actually never found the root cause of it. So I was, I've been working over the past 25 years trying to, to get answers and to get help. And I was working with a practitioner who gave me once again, a very restricted diet.
And there was just so much, I think it was the like low FODMAP
jordana: Mm hmm. Yes.
emma: Which, like, wasn't something I had been familiar with, it's by no means intuitive in terms of like, you know, cooked broccoli is okay, or like six almonds is okay, but like 12 is too many, like, it was very, um, logical and mental. And I remember doing that and having this moment of like, oh, this is not taking me to a place that feels right.
Um, and I actually I contacted her and said, you know what, I am thinking way too [00:13:00] much about what I'm eating. And I think that's actually like potentially chemically helpful, but I don't care because I am, I am thinking way too much about what I'm eating and focusing way too much on what I'm eating. And I feel like this could lead me down a path that is not safe for me.
Um, and so stopped that and then began to work on my relationship with food. Because I was like, oh, I don't think I realized. I don't think until that point I realized what had happened and all the sort of little stories I was telling myself about food. Um, and so yeah, that was probably like my early 30s.
jordana: Okay. What was it? What was it like? So when you talk about like working on my relationship with food, like what did that look like for you?
emma: that looks like introducing a lot of foods back into my life that I had written off. Um, you know, dairy was a big one for me. And I, I understand everybody's different. And like, some people truly cannot [00:14:00] tolerate dairy and I'm not suggesting you just like add everything back in. But for me, I was like very strict dairy free, but hadn't really challenged it in 20 years.
And notice, like there are still, I'm not convinced I would ever like just down a glass of milk. Um, but there are certain cheeses that are totally fine for me. There are, you know, certain things that absolutely I could tolerate. So I started with like, you know, the more like, um, easier cheeses and did that for a couple months and just like reintroduce it.
And I think what happened for me in that process was I, You know, there is a deep social connection with food, you know, and like, not feeling like I can't go to a dinner party. Like, I didn't want to feel limited, or like, bring my own food to every dinner party I attend. If there's a charcuterie board, I want to be able to be involved, you know?[00:15:00]
So, um, so yeah, just slowly introduced that stuff and, and really got to know for myself.
jordana: Mm hmm.
emma: What felt good and what didn't feel good rather than someone else dictating to me, this won't feel good for you, you know, and I think there's a lot out there, even just in the endo community of, you know, specific foods that they call trigger foods, which I just, I don't love it.
I understand the intent behind it of trying to help people feel better. But I don't think there's just this monolith of all of these things that are going to make you feel bad. I think you kind of need to trial and error for yourself. Um, and, and so I've really kind of I've tried not to look at that stuff and just feel in my own body how does this feel for me and there definitely are things that I, I don't partake in, but my gosh, I've opened up my food, food world [00:16:00] so much more now.
jordana: Yeah. Like what you're talking about is making me think about like self trust, right? And how we so often like outsource our self trust to someone else. Like an expert, right? A doctor who in theory, right? We think should know even though endometriosis is, I mean, I, I learned this when I went through with my mom, like they don't talk about endometriosis in medical school.
Like maybe like five minutes or maybe not even all. It's like, So, and then even like OBGYNs, right, who it would start to fall under their specialty, really don't get much clinical training at all in their residency. It's, it's really so underrepresented and underserved, and that's like a whole separate thing.
But we think that, an expert in this field knows more than we do, right? So we listened to that blindly and we do it. And the fact that you were able to say to whoever recommended the low FODMAP diet, like this is actually doing more harm than it is good. It's really incredible. And probably not what the majority [00:17:00] of women experience, right?
Or they tried and they can't stick with it, but they don't have like the presence of mind to say, this is, this is a problem for me. Um, and, um, And what you mentioned about, like, the trigger food language, right? Yes, are there certain foods that might activate or like trigger symptoms. But the language that we use around it is like, what if the language was, you may want to experiment with how you feel when you eat these foods, right?
Or try a few days with a little bit less of this and notice what you feel versus like these hard kind of all or nothing, very dramatic words, because then it puts you on high alert and it like starts to impact your nervous system. So it's all these little pieces really impact. Like the holistic experience of this in ways that we don't often think about.
emma: 100 percent Yeah, I think if I've now labeled a food a trigger food, guess what it probably will, it
jordana: Yes, it will be a
emma: a negative [00:18:00] response. And so that's Yeah, a lot of the a lot of this stuff I've had to do is be like, this is this is safe, we're gonna try it. And we're just gonna feel.
And I think through that, I've realized like, I don't actually have that many foods that I that I don't tolerate well. And, you know, I had a diagnosis of pretty deep infiltrating endometriosis on my bowel, creates alternating constipation and diarrhea, uh, bloating, like all of the symptoms I was having.
So it wasn't necessarily the food I was putting in my body. It was how it was then being processed and my body's ability to process food. And so I've also, you know, since that, you know, that's just since January, reminded myself of that. Um, and I've seen such, you know, I was, uh, we can, if you want, we can talk about the whole process, getting to surgery, [00:19:00] but, you know, post surgery and having that dealt with, I feel so much better.
jordana: amazing.
emma: so, um, so yeah, I think we were so fixated on food's the problem, and food was not the problem.
jordana: a problem. Um, yeah, I'd love to hear more about like, because I know you had the surgery in the States, right? So Emma's Canadian. I mentioned that up front. She lives in Toronto. Uh, London, Ontario, not Toronto. I was going to say Toronto, Ontario. Um, but yes, right. Because I think I'm also hopeful that there's some people listening who have been to matrices, have dealt with it.
And there's a lot of, I learned a lot about it with my mom and you can speak to it more so than even I can, but excision surgery. is the only true form. There's a lot of people who will go get like an ablation where they like, burn it out. Not the same type of treatment. So we don't have to get, you know, whatever you feel comfortable sharing, but I'd love to hear about, I guess the [00:20:00] experience of surgery and then also like what has changed, what you've noticed, like a shift. in your body being able to physically do and sort of how you're thinking about your own body kind of coming through this process.
emma: yeah. So I actually had ablation surgery, even though I didn't have a diagnosis of endometriosis. I had ablation surgery in 2020. Um, the, um, gynecologist I was seeing at the time, I had two massive cysts on my ovaries. Um, they were 12 and 15 centimeters. So fairly substantial. Um, and. I'll never forget. He told me, you know, we're going to do this surgery to remove the cysts and while we're in there, we will look for endometriosis.
And I thought, okay, great. He does the surgery through ablation technique, um, which is more of like burning the tissue. So there's a much higher chance that cells are going to be left behind, which will then proliferate [00:21:00] again. So sort of the recurrence rate after an ablation is well over 50%, just because it's like near impossible to be able to get, like, we're talking like one cell left behind.
Can, can, uh, you know, cause the disease to, to stay. So had the ablation surgery and was told post op very confidently, like no sign of endometriosis. I remember him saying it to me, it's in my documentation and thinking, okay, great. I've had these cysts removed, like we should be good to go from here. I don't have endometriosis.
Um, and it was just, you know, That was a gynecologist who also delivers babies. He, like, you know, does hysterectomies, he does, you know, kind of your general obs gyn and I just didn't know better about like who I needed to, you know, this. This doctor was actually the head of Opsgein in my city, [00:22:00] which is a medical hub.
Like, I had full trust that he knew what he was doing. And I now, you know, we, we touched on it earlier. I now know the education around endometriosis for a general Opsgein is, is pretty minimal and, and most actually aren't able to recognize. endometriosis on laparoscopy. Yeah, exactly. So he had been in there.
He just didn't know what he was looking for. Yeah. So, um, so yeah, I mean, after that surgery, I felt okay for about six months and it was, you know, uh, uh, uh, a recovery process, but then the pain came back, if not worse. Um, and so it was through this process of having repeated ultrasounds and monitoring these cysts that I started to educate myself more on endometriosis and on the care because I started to feel like, um, this guy doesn't know what he's talking about.[00:23:00]
Um, and I, you know, I'm in the healthcare profession, my husband is a physician, so we really took the reins on like, okay, what, what needs to be happened? Who do you need to see? What's the like gold standard for diagnostic? And it's, you know, I'm so grateful that we have the education and the ability to do that.
And that's what I think is so hard for me is like, I have so much privilege. In this system, like literally all the privileges, maybe I like my one non privilege would be that I'm a woman, not a white man, but like every other privilege, I know I have lots of unearned advantages. And this process was still impossibly hard for me.
It still took me, like, calling and reminding doctors they were supposed to send their imaging requests. Like, I had to work so hard to get where I was, and I know that so many people [00:24:00] can't do that for themselves. And don't know even to do it. That for themselves and do I see just how many people must be falling through the cracks here?
And when it came to getting my diagnosis and talking about next steps I knew that excision surgery expert excision surgery was the gold standard and I wasn't going to Have anything else be an option? Unfortunately. So Canada's healthcare system is a public system, so it's universal healthcare, which is so great for so many reasons.
And, uh, you know, when it comes to getting a surgery like this, which is a bit more niche, um, and you know, I was colorectal surgeon at the same time, um, there's one surgeon. In our province that can do excision in Toronto, and I got referred to him [00:25:00] and using my sleuthing because I knew I was going to have to sleuth, I found his email and I emailed him and I said, I'm in a really bad way.
I'm off work right now. Like, what are your timelines like? Because I knew it was going to be a wait, it's not uncommon to have a year's long wait for care in Canada. And he emailed me back, like so grateful, he emailed me back and he said, right now we're looking at 2028. Mm hmm.
jordana: Oh my God. I'm
emma: And I remember getting that email and I just, like, completely broke down.
Because at this point, so much of my quality of life had been stripped away. And I was thinking, okay, we're like, aw, we're like, we've got the diagnosis, we're gonna get surgery, then I'll feel better. And to know that that stick had been moved four years out? I just, I was like, I can't do it. I can't [00:26:00] wait that long.
And that's really what had me start to look at other options.
jordana: like, I, I, I, I don't, I can't even speak. I was not expecting you to say that. I was expecting you to say more than a year, not four years.
emma: years, four years to get the care you need.
jordana: that's because there's such a backlog of patience.
emma: There's a backlog and, and you know, he's the person that is sent these quote unquote complex cases of endometriosis and it's like, no, like this is just endometriosis. It will be on your bowel, and it can be on your bladder, like it will be in all of these
jordana: end.
emma: And if, you know, I think it's sort of seen as, oh, well, if it's just involving like your ovaries, like anybody can do it.
And like, if it gets anything beyond that, uh oh, like we don't know what to do. It has to go to the specialist. So unfortunately, you know, this, [00:27:00] this trained excision expert is like bearing the load for the fact that we are not We're not funding these fellowships to be able to do these surgeries. Um, and he's not even Canadian.
He's, he's come up from Brazil. Brazil is a massive hub of, of endometriosis care. They're leading the way by far. Um, so he's from Brazil, but, um, yeah, I just, that was untenable to me. I could not fathom, you know, I was already not able to work as a physical therapist, your job is very physical. Um, and I just, I.
I could not do it. And I had so many days where I was having to cancel patients only to the day I rescheduled them feeling even worse. And like it just, so I, I went off work that way and I was just like, how, how do we do this? So I started looking at other options and, um, there are, you know, still I would say, Like, we're talking [00:28:00] handfuls
jordana: Yep. There's not many.
emma: of expert excision surgeons in the U.
S., but, you know, lots of them are private, um, and so we'll accept international patients. And it was just such an interesting healthcare experience being somebody who's grown up in a public healthcare system. Like, I was floored. You can imagine, like, you were shocked by the four years. I was shocked. I would, like, call a surgeon's office and they would be like, can, uh, the doctor call you on Thursday?
And I was like, Like this Thursday,
jordana: Yeah. Mm-Hmm.
emma: it was just so crazy to me, like how quickly I could access care. Um, and so I interviewed and spoke with a few surgeons in the U. S. I spoke with a few surgeons. There's a center in Mexico that does it. And really just went with the surgeon that I felt, um, Most like competent and comfortable with personally and just personality like I think the beautiful thing about private health care [00:29:00] is you Can sort of find your fit just like you was like a therapist.
I felt like I like found my fit in a surgeon And so I traveled to Atlanta. There's a center for endometriosis care in Atlanta and Dr. Cinervo was the surgeon I initially spoke with and I think I felt a connection to him because he's actually Canadian.
jordana: Okay.
emma: Um, so he's from Canada, did actually his training in my city at the university that my husband works at.
Um, and he chose to keep his practice in the U. S. because he knew if he came back to Canada, he wasn't going to be able to practice. the way he needed to. Um, unfortunately, Dr. Sinervo had COVID, um, the week of my surgery. And so I had, yeah, we were literally at the airport and the clinic called and said, Oh, he has COVID.
He's not going to be able to operate this week. So we flew to Atlanta. not knowing if I was going to get surgery, but luckily his colleague was [00:30:00] able to take my case that week.
jordana: Okay.
emma: Dr. Uranio was amazing. Um, so, you know, did the pre op the day before, met him the day before, um, felt so comfortable and confident in him.
Um, was able to have the surgery the next day, stayed in Atlanta for about a week after, and then flew home. Um, and Yeah, I am so grateful. I knew immediately, waking up from surgery, just like, I, yeah, something was different. I felt different. And like, I understand, I was pumped full of all sorts of things, but, um.
It was, it was different than that. It wasn't just like, Oh, I have anesthetic in me. It was just like, wow. Like actually my, my hip, my right hip, I thought I had had a labral tear. So a tear of the cartilage in my hip and I woke up from surgery and I do remember in like a bit of my fever dream, just like moving my hip and being like.
It moves [00:31:00] now. I had so much scar tissue and adhesions in the right side of my pelvis. It was not a hip issue at all.
jordana: My mom almost had a hip replacement because of misdiagnosed endometriosis, which turned out to be cancer and like a very rare case. But that was the, the cancer was a, a born out of untreated endometriosis for, for, uh, Years and years and years and years and a lot of other complexities, but yes was scheduled for a hip replacements
emma: Oh, so crazy. And you know what? Even as a physical therapist, like I've been in practice 15 years. was never once something that was, Like, I was completely, I was treating it as a labral tear. I never, even after a diagnosis of endometriosis, it wasn't like my clinical brain said, Oh, endometriosis can have, or you know, uh, uh, uh, differential diagnosis for hip pain [00:32:00] is endometriosis.
That was not on my radar and I don't think that's on a lot of orthopedic, uh, physical therapists radar. It was really shocking to me. Like how did I not know this? And it's definitely something moving forward in my practice. You know, if somebody is coming to me with a hip issue, I'm going to ask some more questions because my gosh, we don't want to be doing hip replacements.
I had my hip injected like so unnecessary because I just had the wrong diagnosis.
jordana: Yes. Yes. It's unbelievable like how, how little information there is, but also how siloed providers get into their thing. Right. And not looking at a human body as a connected ecosystem. Right. A hip is not just a hip. A hip is connected to your pelvis, to your bowels. Like it's just, it's all interrelated.
And it's really unfortunate that there's not more of a, like a, I hate, you know, holistic is an overused word, but like the human body, I always call it as an [00:33:00] ecosystem. And meaning that what's happening in one part of that ecosystem is affecting another part, just like in a rainforest or something like that.
When you start to, when one species starts to die off, it affects all the other species. It is the same thing and, um, it's, it's crazy, but not crazy to me that you experienced the same thing as my mom, like with the hip pain and, and thinking it was something else, like an orthopedic issue. And it was, it was endometriosis.
emma: And I think that's why potentially this gets missed a lot.
jordana: Mm
emma: because everything, you know, even and like all of it, even from my brain, everything's didn't, like it didn't seem connected, but at a certain point I was like, this has to be, but I was seeing the GI doctor and he was, you know, dealing with the constipation and diarrhea.
Yeah. I was. Dealing with a gynecologist who was dealing with, like, the cramping and the cysts. And nobody was talking to each other and being like, Hey, here's what I'm seeing. Here's what you're seeing. How can we get a better clinical picture? Everything was so [00:34:00] siloed, and unfortunately, endometriosis symptoms are not siloed.
They affect, literally, can affect every organ. Um, and, And so you have to be able to zoom out and, and connect the dots in this case. And I think that's why the average length to diagnosis is eight to 10 years.
jordana: hmm. Which
emma: And like, it just is crazy. It does not need to be that way. Should not be that way. Um, but I think the way we've developed medicine, we've, we haven't helped ourselves.
jordana: Definitely not. Right? And I think, like, this podcast has a very small reach, but if one person listening, if they're experiencing this, or they know someone who is, right, if even one person can get to that diagnosis faster than 8 to 10 years, which is I mean, a mind blowing amount of time, right? It's like, there needs to be more awareness.
There needs to be more education. Um, there needs to be a bigger platform for it. I know so many women who [00:35:00] have, have finally have a diagnosis, but after, again, years and years and years.
emma: And we're talking like one in nine women. This is not a rare, this is not a rare disease. This doesn't fit a rare disease category, but we're treating it, we're researching it, we're funding it like it is the most rare, but like I guarantee everyone listening, if you are not experiencing endometriosis yourself, someone in your life is
jordana: Yes. A hundred percent. Absolutely. Yes. How has, right, so you, when was your surgery in the
emma: Uh, June. June.
jordana: June. Okay. So like three, like three, three and a half
emma: Three months. Yeah.
jordana: What has, or how has your relationship, your connection, your understanding of your body, how has that shifted like through this whole experience?
Yes.
emma: Yeah. It's shifted a ton. Um, I'll try and verbalize, [00:36:00] um, just in terms of knowing that you had this tissue that was causing these issues, this tissue is now gone. That's the other thing about the US that I think is wild is the surgeon literally handed me like a six and a half hour video of my surgery as well as photos to like, I don't know.
I've. That definitely does not happen up here. Um, and to know that that's been removed, I was kind of like, okay, like where, like, I have really worked on telling myself, like, my body can function as a body. It's able to, I trust it. It can. Um, and. Yeah, I think I'm not giving myself kind of like that too sensitive, can't tolerate anything story anymore. I think I'm like, that's what was causing the issue. The issue is now [00:37:00] gone. We can move forward. Um, and I think that's really been so helpful. I I'm absolutely shocked. I've had four cycles since surgery and I remember the first time I like It's the first time in my life I've been surprised getting my period.
Because I didn't have all of these warning signs of like massive migraine the day before and diarrhea the day before. I just like got my period and you know, no cramps. I haven't had to use Advil. I haven't had to use Tylenol. I haven't, I had a whole system. I had my cramp cream and my heating pad and like all of this stuff and now it's just sitting on the sidelines.
Like I haven't needed it at all and to think that even, you know, it's so kind of like normalized that like, and I understand like, you know, there's varying degrees, but the degree to with which I wasn't [00:38:00] able to stand up. Around my cycle and a doctor to tell me like that's normal like you're okay You can deal with that take painkillers as needed now.
I'm like wait, it can just be like this
jordana: Right,
emma: You can just get up in the morning and realize you have your period and it's nothing more than that Like I'm just floored. Um, so I feel like I'm developing a new relationship with my cycle as well Um, because it was kind of this like black mark on my month, or honestly black mark for three weeks of the month.
Um, and now it's like, yeah, it's, there's, there's nothing to it. Um, which I just, I didn't even think, knowing I was getting the surgery, I didn't ever think that was possible still.
jordana: One outcome. Yeah. And it's like three and a half months is not that long. It's like, who knows what other outcomes there are that you haven't even had a chance to experience yet, which is amazing.
emma: [00:39:00] yeah, I'm like, I actually just got back from a girl's weekend, which again, I was like, so able to do and, you know, I wouldn't have done that last year. I, you know, I would have been like, oh, that's around my cycle. I'm not going to be able to walk. I'm not going to be able to be social. So I, I went on this girlfriend's trip and they were joking with me because I pretty much wore like jeans and black jeans all weekend.
And they're like, why are you wearing jeans? Like, just be comfy. And I'm like, I haven't worn jeans.
jordana: Yes. Yes.
emma: been rocking high waisted leggings because, you know, like I was so bloated and it was uncomfortable. And like, even that, how I present to the world is different now. How I dress myself and how I express myself is different.
And like, it may seem, you know, these things all might seem small, but they just have a massive impact on opening up my world.
jordana: Totally. I, it's funny you [00:40:00] bring that up, not funny, but I, cause I was thinking I wanted to ask you about that. Right. Cause you'd mentioned in a couple of different occasions around like the bloating, right. And I know that that's a very common symptom and what I was curious and you just sort of touched on it there. What were some of like the, the appearance based impacts of this, right? Like when your stomach was bloated, did that impact you like not being able to wear the clothes you wanted to wear? Like what was that piece of it? Like,
emma: Yeah, I definitely started buying extra large sweatshirts. You know, I always just told myself, like, oh, I'm going for, like, the oversized look. Um, and luckily that has kind of been in style, but, um, yeah, I was really kind of hiding my body because I never knew throughout the duration of a day, like, I would fluctuate close to 10 pounds around my cycle. Um, and, and then there's like shame around it. And. And [00:41:00] so I think I maybe again didn't notice as much. I think these things happened subtly over time. Like I was dressing in a way that I was hiding myself because I didn't feel it was acceptable to me or to society and, and that felt safe. And it's just so interesting now, like even the jeans thing, like I don't think I had conscious awareness that that was happening, But now I definitely see that it was happening.
jordana: Yes. Yeah. So it's like, again, like, all these unexpected outcomes, right, from going through this, or going through the surgery, and just, you know, The freedom and autonomy to, to exist without being controlled by the disease and also in some ways controlled by like the medical care, which everyone has a good intent, right?
Everyone was doing the best they can with the information they have. [00:42:00] And also like, right. Intent versus impact, right? The intent of all those practitioners was positive, but the impact was not. Um, and there's a lot to reconcile around that. That's
emma: I am able to look back now and see how much of my life was controlled by this disease and how many micro decisions I was making around this disease and to have my world open up again, like to not think about the dates of a weekend or to not, you know, I was always like really wanting to make sure I knew exactly if we were going out for dinner, like I was doing exactly where we were going.
I pre looked at the menu, made sure there was something quote unquote safe for me to eat, like all of this stuff. And you know, traveling on the weekend, we just like went to a restaurant and I was so relaxed about it where I think I became really hypervigilant around a lot of things that [00:43:00] I didn't realize until later.
So the world has just like opened up for me. And I am so grateful.
jordana: I'm so happy for you. Um, and I so appreciate you sharing your experience in such detail because to your point, one out of nine, there is someone listening
emma: Yeah.
jordana: experiencing this, who has experienced it, who knows someone else. Um, And so just creating awareness around this for people to advocate for themselves and to know what the signs and symptoms are and who to look for and what the real treatment is, right?
Just even to have the education around ablation versus excision is huge. Um, so thank you so, so much. I mean, this is like a topic that's important to me personally because of my mom.
emma: great.
jordana: Um, And so I just really appreciate you, you know, sharing as much as you shared and the context of all aspects of your life that it impacted.
emma: My greatest pleasure, because I feel like somebody else did this for me. [00:44:00] You know, I listened to somebody in October of 2022 and I was like, Oh my gosh, that's me. Right. And I, I just feel like the more we're able to share, the more we can empower each other. And I'm not saying it should be this way that we're having to like crowdsource information
jordana: know.
emma: you know, that's where we are right now.
And if, yeah, a hundred percent, I always tell people like my DMS are open. My Instagram is at press play physio. I. love just connecting with people and supporting people and will answer any other questions people have. Um, because I feel like that's kind of how I got to where I was because other people did this to me.
And the endometriosis community is just incredible because we've all gone through so much. Now I feel on the other side, like it is part of my role to help somebody across that bridge. Like Easier, [00:45:00] faster, with less distress.
jordana: yes. There's no greater feeling than knowing that you are not the only one, right? And because this disease is so underrepresented and not talked about, to your point, you walked around for 24 years, know, gaslighting yourself, questioning, minimizing your symptoms because no one else is. Was relating to you or you didn't have that community.
So it's like right the antidote to shame is connection That's my favorite Brene Brown learning so to be able to connect with one person, right? which is you sharing this and then For then that person to get pulled into your community and the resources that are out there like it's just so incredibly important for, you know, for quality of life and just being able to advocate for yourself.
So
emma: Yeah.
jordana: thank you so much. Um, I know you just shared your contact stuff. It'll be in the show notes also for anyone who wants to reach out to you or have questions. [00:46:00] Emma's an open book.
emma: open book. I'm a total, nothing is TMI around here. I've been through it all.
jordana: all the stuff like I'm the same way. Um, awesome. This has been great. I have learned a lot and I'm just so happy to have this as a resource for this community. So thank you so much.
emma: Aw, it's been my absolute pleasure. Thank you.