Hi everyone and welcome back. I am with a very special guest today that I have been looking forward to speaking with for a long time. Her name is Katie Boyce. Katie, welcome.

Katie Boyce (00:13)

Hi, thank you for having me.

Dr. Ginger Garner PT, DPT (00:15)

Yeah, thank you for taking the time out to be here. This conversation is so important because you’ve been in the endometriosis space for a while now. And I want to give the audience a little background on what you’ve been doing before we kind of launch into this conversation. Katie is a board certified patient advocate and she is a consulting chemist with her bachelor’s in biochemistry. Love that.

She dedicates her social media efforts to empowering and educating individuals impacted by endometriosis, which includes, and I think this is really important, and I’m sure we’ll touch on this, breaking down myths complex scientific topics and discussing those, up-to-date research, and controversies within the endometriosis community. She regularly consults with key opinion leaders, researchers, and surgeons in the field of endo.

to ensure the patient’s perspective is present. There are several places that you can get in touch with Katie. One is endogirlblog.com and at endogirlsblog on Instagram, but we’re gonna put all this stuff in the show notes, so don’t worry about that. But again, welcome Katie and thank you for being here.

Katie Boyce (01:33)

Yeah, thank you.

Dr. Ginger Garner PT, DPT (01:36)

So tell me a little bit about your history in terms of you have this amazing background in biochemistry, but you also have this passionate advocacy in endometriosis. How did those things intersect for you?

Katie Boyce (01:51)

Well, you know, I feel like I always start with my, my endometriosis story is very much like most. We’re really not all that unique. I know that might sound a little bit counterintuitive in a lot of ways, but I say that because I think it goes to show just how many there are of us who are struggling with this and still get left behind or ignored in so many ways. And we’re all kind of screaming, right? We all have this very similar story.

So of course, my story with endometriosis started from a young age with pain that nobody could explain and kind of vague symptoms, a lot of gastrointestinal symptoms. And my family, were relatively receptive and tried their best to get me to different providers. And over time, just kind of found ways to manage and kind of just say that I guess this is my new normal. And of course, dealt with the period pain. And I got to a point though where I…

I just really wanted to live a normal life in some way. I did pretty well in school, but college was a struggle. When I got to college, I didn’t do that great. I ended up dropping out of my first university. I didn’t go back till later. It was hard. I had to start back out at a junior college where I could learn how to deal with my health.

while navigating and juggling school. So I felt like I finally got that under control when I finished my associates degree and I had gone back and I fell in love with biology of all things. And I said, okay, I think this is what I want to do. And I had to take some chemistry courses, of course. I was terrified, but I got really fortunate. I had this amazing professor who really sparked an interest in this for me. So that is what started my journey into biochemistry.

I moved on to university and I really just thought, you I’ve got to find a way to balance the two. It was hard. I at one point did have to get access services through my university to basically have a note that said, I’m having these symptoms today. I’m not going to be able to come to class. Fortunately, it was a primary care physician that helped me with that. During this entire time, I did not have an OBGYN that was really understanding.

Dr. Ginger Garner PT, DPT (04:12)

Hmm.

Katie Boyce (04:13)

because of him, he really helped me get through that time. And of course, being a doctor, he really encouraged me, do what you can to get through this degree. And I even had a professor, a biochemistry professor one time saw me in the bathroom and she told me, painful periods are not a reason to miss class. And cause I was in there sick, I was obviously at school, but I was unable to make it through that class. And so that day, so.

Dr. Ginger Garner PT, DPT (04:33)

my.

Katie Boyce (04:40)

You know, at that point, it just kind of became this thing where I was angry. You know, I was angry. And by this time I did have a diagnosis of endometriosis and I, but I took access to the care I needed. It was expensive. I had to travel and I really just buckled down and did what I could to graduate. And then once I was able to graduate, I then was able to access my care finally, but.

Dr. Ginger Garner PT, DPT (04:45)

Hmm.

Katie Boyce (05:07)

I really wasn’t thinking of advocacy at that time. I was thinking I’m going to have this surgery and I’m going to move on. Unfortunately with endometriosis, it doesn’t always work that way. I had a lot, I had a lot more to address, but it all came full circle when I, my grandfather got sick and I ended up having to help navigate that process. And I realized that patient advocacy was a huge passion of mine at that point. I started seeing so many flaws and gaps in the system. And so,

Dr. Ginger Garner PT, DPT (05:34)

Yeah.

Katie Boyce (05:34)

I was helping my family look through medication and applying that biochemistry knowledge at that point with his care. And, you know, after that situation, I was like, how am I going to incorporate all of this? And that’s when I decided to become a board certified patient advocate.

Dr. Ginger Garner PT, DPT (05:53)

Awesome. Tell me about some of the gaps in your, from your very unique perspective, what are some of the gaps that you perceived as you were going through the process to get a diagnosis?

Katie Boyce (06:06)

First and foremost, think during this time, it was the late 2010s, there’s been a big shift since then. And during this time, I never even heard the word endometriosis. Painful periods were definitely, and I know they still are downplayed, but back then there wasn’t the Orlissa that we see today or the drugs that are marketed toward endometriosis. So there wasn’t really a discussion of that when you went to an OB-GYN.

Dr. Ginger Garner PT, DPT (06:34)

Mm-hmm.

Katie Boyce (06:34)

And even when I had my first horrible episode that put me in the ER, I had passed out in my grandparents bathroom. So my grandpa rushed me to the ER. And after that episode, you know, I’m there and they say everything’s normal. So they just send me home and say, follow up with your OBGYN. And of course I follow up and they’re like, well, everything looked fine. You know, we don’t, we don’t know. And if you’re not going to be on birth control, then there’s nothing we can do. Birth control wasn’t, wasn’t, didn’t work for me.

Dr. Ginger Garner PT, DPT (06:56)

you have.

Katie Boyce (07:03)

I actually developed superventricular tachycardia when I tried birth control. I tried a few different kinds of birth control. And so it just wasn’t in the cards for me and I didn’t have any options. they were not, and surgery was definitely off the table then. They were like, you’re young, there’s nothing wrong with you. I was told that because I had had presumptive IBS since a child that I had had an episode.

of a painful bowel movement that had caused me to pass out and seize and that’s what sent me to the ER. I still have the notes from that OB-GYN that says that. that episode is actually what encouraged me to find answers elsewhere. And I was bartending at the time and this is one of those huge gaps in care. Instead of an OB-GYN or someone on the front lines referring me,

Dr. Ginger Garner PT, DPT (07:37)

Wow.

Katie Boyce (07:54)

to someone who may be able to help me, I’m at work bartending and one of my regulars says they were all up to speed on it because I miss work or they could just tell the pain in my face. And we were chatting and this one wonderful man told me, you know, I know a really wonderful physician. He diagnosed me with a rare disease. Maybe you could see him. I said, okay. So I go and yes, he was just an internal medicine doctor. He’s an internist, but he also happened to be the physician for our local MLS team.

And he was just, I was like, this is such a off. I don’t know what I’m doing going to this guy, but I go and I always call him my doctor house. Cause he wasn’t like a real like soft, like empathetic type doctor, but he listened to me and he said, I think I know what’s wrong. And he said, I think you have endometriosis. And I had never heard that word before. Yeah. And he said, unfortunately you’re young and no one’s going to do surgery for it. And I’m like, why, how do you know this? He said, unless you tell them that you’re worried about your fertility.

Dr. Ginger Garner PT, DPT (08:43)

Wow.

goodness.

Well, he just told the truth. Yeah, that’s the conversation that I’ve had so much with so many other people that you’re only considered worth being out of pain if you also want to have a child. Yeah. Mm-hmm. Yeah.

Katie Boyce (09:07)

There’s that huge gap right there. And I don’t want to blame any particular provider. I think it’s a systemic thing, right? And it’s a thing like they don’t know how to treat the pain anyway. So why even go down that route? You know, it’s depressing for everybody involved, but you know, he coached me on that and I went to another OBGYN and I did get my diagnosis. And so that was the validation, right? And I had my little surgery. I say little because then, you know,

Dr. Ginger Garner PT, DPT (09:15)

Definitely.

Mm-hmm.

Yeah.

Katie Boyce (09:36)

I thought, okay, I have my surgery and everything’s going to be great now. it wasn’t, but it did encourage me to try some things. I couldn’t do birth control. You I worked with a naturopathic doctor and I really thought, you know, I could, I could manage it that way. And I say that bought me some time, right? But again, these gaps in care, even my, my wonderful primary who helped me, you know, get those services through university. And he would let me come into his office as needed to get shots of Toradol.

you know, anything he could do, but who was he going to refer me to? He didn’t know. There was, there was nothing. And it was just, I thought to myself, how is this where we’re at right now? Patients are not even being told about endometriosis back then. Some today still aren’t, you know, pain doesn’t matter unless you’re worried about your fertility. And, and then on top of that, you go to different specialists and nobody coordinates care, right? It’s all fractured.

Dr. Ginger Garner PT, DPT (10:09)

Mm-hmm.

Mm-hmm.

True.

Katie Boyce (10:33)

So you see one doctor, you get a prescription, you see another, you get another prescription, nobody’s cross-referencing, and it becomes, it’s very fractured.

Dr. Ginger Garner PT, DPT (10:37)

Mm-hmm.

So tell me what happened with that first surgery after you go in, it’s the, when you said little surgery, describe that experience for you. What did they ended up doing? You did get an endo diagnosis. How did that come about? What did they do to actually address it and what happened after?

Katie Boyce (11:03)

So the OBGYN had, she was really, really kind. Obviously not like an endometriosis specialist by any means, but I appreciated her kindness, but it was definitely downplayed, right? This is just a routine laparoscopic procedure. I’m gonna go in, I’m just gonna look around in your pelvis and see if you have any endometriosis. And if I see any, I’ll burn it out or I’ll cut it out. Or she actually didn’t say cut it out, I’ll remove it. And I didn’t know what any of that meant.

Dr. Ginger Garner PT, DPT (11:30)

Hmm.

Katie Boyce (11:32)

I just knew, okay, whatever, we’re going in, she knows what she’s talking about, it’ll be great. So it was about like a 30 minute in and out for her. I was in a little bit longer, but I was discharged same day. I went home, within a couple hours a friend of mine came over, we went and had Panera. It was just so downplayed. I was very drugged up. That’s the only reason I could go do these things. And then I didn’t find out till later that…

Dr. Ginger Garner PT, DPT (11:55)

Yeah.

Katie Boyce (12:00)

I had been so out of it, you know, my sister had been told, yes, she has endometriosis, but it wasn’t until later I got these really funny, horrible black and white grainy pictures that were like, here was some endo here. She did fulgurate, so she didn’t just straight up burn. She did attempt to remove it a little in a little bit better way, but she said there were like three spots and I was like, okay, great. This is awesome. And then I was in organic chemistry at the time and I remember I had a lab like

a week and a half later and just having some post-op bleeding. I remember being in college and calling the doctor’s office and them saying, if it’s not golf size, clots are larger, don’t worry about it. It was interesting because I think that at that moment, it shifted in my mind that, wait a minute, I think I had a major surgery of some kind. I’m trying to navigate, once again, school and this being told that

Dr. Ginger Garner PT, DPT (12:56)

Mm-hmm.

Katie Boyce (12:59)

It’s not a big deal and not understanding any of it. I was just told, well, you can take this progestin, you can try this since it’s not anything like the birth controls you’ve tried before, give that a shot. But she made it seem very, this is what you do. And I was told if I wanted to get pregnant, that was the time. I was in my early 20s, I was in a horrible relationship and I was still being told, you know, this is what you do.

Dr. Ginger Garner PT, DPT (13:20)

Mm.

Katie Boyce (13:29)

It was just that experience. I think I was, I look back on that and I think if anything, I was so just overjoyed with validation that I wasn’t, the reality wasn’t setting in.

Dr. Ginger Garner PT, DPT (13:39)

Yeah. Yeah. And they weren’t speaking about it with all the, I’m not sure what year that was, but they’re also not speaking about it in the full context of the way it needed to be addressed or addressing it surgically the way we know now that it needs to be addressed. So yeah.

Katie Boyce (13:44)

Thank

Right, It was three and a half years later when I finally had my more legitimate surgery for it. And unless my disease, no, my disease had not spread or changed that much in the three and a half years. I just know that she hadn’t looked outside of the immediate area around my uterus because the symptoms had been the same all along.

Dr. Ginger Garner PT, DPT (14:17)

Right.

Right. And then continued probably after, and in some cases they can get worse. And in some cases they don’t change after something like an ablation, which is hopefully, and if you’ve not listened to any other podcast about endometriosis, ablation, just to be clear, is not the gold standard for endometriosis. It is excision. And so if you’ve been to an OBGYN,

And they have talked about addressing endometriosis. One of the very first questions to ask is how often do they deal with it and how do they approach it before you end up spending a lot of money, a lot of time recuperating and they don’t actually take care of the issue. Yeah.

So what was the time of your first symptom to the time of that actual initial diagnosis? How many years passed by?

Katie Boyce (15:24)

I think it was around 15 because my symptoms started when I was in about third grade, a lot of gastrointestinal, and then by the time I was in fifth grade, I had started my period. And then my period started, it wasn’t horrific yet, but I had always had the gastrointestinal symptoms. And I had those gastrointestinal symptoms until I had the endometriosis around my bowel cut out.

Dr. Ginger Garner PT, DPT (15:26)

15 years.

Mm-hmm.

Katie Boyce (15:52)

Obviously, that was the connection there. was my dad has always been into alternative medicine and holistic health. And I remember like we put a whole home like water filtration system in the house and I was going to all I did all sorts of things to appease my father, you know, as a child to try to get well. And unfortunately, you know, none of those things could cut out the endometriosis that needed to be cut out. Right. And so

Dr. Ginger Garner PT, DPT (16:17)

Yeah, good cure. Yeah.

Katie Boyce (16:21)

I think, you know, as a, they kind of waxed and waned. I was diagnosed, of course, you know, with unspecified autoimmune disease, so many bizarre symptoms that get overlooked that endometriosis absolutely can cause just from its inflammatory response on the body. Things were overlooked. You know, my extreme fatigue, you it’s like, you seem like you have mono, but you don’t. This is weird. You know, it just, my childhood was plagued with so many things like that.

Dr. Ginger Garner PT, DPT (16:45)

Mm-hmm.

Katie Boyce (16:50)

UTIs, constant UTIs, but it got to the point where were they UTIs? This was the 90s. They were just throwing antibiotics at me no matter what. You know, that’s what they did then. was like, you know, turns out I had endometriosis on my bladder.

Dr. Ginger Garner PT, DPT (16:59)

They sure were, yeah.

Mm-hmm.

Yeah, let’s talk about that for a second because I think for the listener in other podcasts, and I want to reiterate in this one as well, in other episodes, we make sure we iterate that endometriosis is not just a reproductive organ disease. It’s not just a disease of the reproductive organs. That it can be in multiple places. And the bladder, the bowel are some of those. So when they finally got

to the excision. Where was it? Where was the endo? Where wasn’t the endo?

Katie Boyce (17:42)

Where wasn’t? I was fortunate that it wasn’t actually on my diaphragm. I do that because that’s the diaphragm shape. It wasn’t actually there, but I mean it was all throughout the pelvis. I actually had an endometrioma on my right ovary. I actually had an endometrioma in my behind my uterus that was not even connected to my ovary anymore. So this might be vulgar, but I call that area the trash can.

Dr. Ginger Garner PT, DPT (17:47)

That’s good. Yeah.

Hmm.

wow.

Katie Boyce (18:10)

because it’s just like they always find so much endo back there. Endo, scar tissue, I had an endometrioma back there. My bowels, my appendix looked fine, it looked okay, it was a little bit suspicious. It’s common for the appendix to be affected. My bladder, pelvic sidewalls, all the way up to the diaphragm, but not on the diaphragm.

Dr. Ginger Garner PT, DPT (18:14)

Mm-hmm.

Mm-hmm.

but not on it. Did you ever have painful breathing as a result of it being close to there? Okay.

Katie Boyce (18:42)

It’s hard to tell because of my superventricular tachycardia diagnosis and also asthma. So for me, was like I would get the side pain, the sharp side pain, but so much of that doctors and everyone would tell me that’s just something that can happen with asthma or superventricular tachycardia via costochondritis, know, like the sharp pain. And we’re like, that just happens too. I can’t tell you how many EKGs and…

Dr. Ginger Garner PT, DPT (18:50)

Right.

Mm-hmm. Mm-hmm.

Katie Boyce (19:09)

cardiologist I went to for those symptoms. So it’s hard to tell, right? Yes, those things have actually now that we’re talking about it, I’ve never had some of those symptoms since. I was like, wait a minute, it’s funny. Even I used to have to get steroid injections for the joint pain I had. that’s part of the autoimmune diagnosis that they were like, is it like a rheumatoid thing going on or is it a lupus thing? But my joint pain went away after my excision also.

Dr. Ginger Garner PT, DPT (19:20)

That’s what I was wondering, you know, how you’re…

Katie Boyce (19:38)

So, that joint pain was in my hands. So, I don’t know, right? Like, anecdotal, but all I know is that I went from needing a steroid injection for joint pain in my hand to not.

Dr. Ginger Garner PT, DPT (19:39)

That’s important.

Right. And with the inflammatory process, just to explain a little bit, you know, for everyone’s benefit, is the constant inflammatory process that endometriosis just, it’s pervasive and persistive, that there’s always some kind of inflammation going on. So it does make sense that you would have pain in far reaching areas that you can’t really make sense of that could potentially then when it’s removed.

go away as in your case it did.

Katie Boyce (20:21)

Right. I’m sure there could be arguments otherwise, but at the same time, know, and I just know this from research and knowledge, the human body is so much more complex than, you know, than we can really put down and say, and every wonderful doctor I’ve ever had, the good ones say it’s possible, you know, the good ones always say that the ones that, you know, aren’t as good, they have less humility and they tend to say, no, there’s no way, but

Dr. Ginger Garner PT, DPT (20:41)

Thank

Katie Boyce (20:49)

Whenever I’ve had the honor and privilege either as an advocate to talk with phenomenal doctors or as a patient work with these phenomenal doctors, it’s always, we don’t know.

Dr. Ginger Garner PT, DPT (21:00)

Yeah. Well, and another important thing is too, while looking at the gut microbiome and carefully attending to diet and lifestyle choices, you know, sleep and things like that, isn’t going to cure it. It also can end up, you know, mitigating and managing, obviously not, again, not curing, but certainly not hurting and definitely can help in terms of how we view management of the disease. What I mean by that is,

we’re not even sure currently, if you look at the literature, which you also read, know, how lesions on the bowel at any point in the bowel are going to impact the gut microbiome. And of course, when the gut microbiome is then impacted, you have everything from stress management and mood regulation and impacted, everything upstream and downstream, which of course can contribute to inflammation in and of itself.

So there’s so many variables that can contribute to, for example, someone having musculoskeletal pain, pain in their joints or pain otherwise.

So we’re on the other side of the excision now. with your, I mean, you probably had to develop some incredible strategies for coping with the emotional stress or the pain caused not just by endometriosis, but also by the medical gaslighting, whether, you know,

overt or covert or however you want to describe it that happens in that 15 year span, right? That long span of the wait for you. What are some of the things that helped you the most in terms of coping with that strategy wise?

Katie Boyce (22:58)

So I think it’s very important that I share that a lot of my coping was with alcohol. I, am an alcoholic, that became probably at its worst when I was about 22. And I didn’t know how to appropriately handle it. And there was a lot of anger, full of rage. During this time I also was diagnosed with bipolar. And…

Dr. Ginger Garner PT, DPT (23:05)

Really.

Naturally. Yeah.

Katie Boyce (23:28)

So I’m navigating that as well. Fortunately, with that diagnosis, thanks to again, that internal medicine doctor, he referred me to a wonderful neuropsych. I got my diagnosis and then I got with a great psychiatrist and most importantly, a therapist, a counselor. And she was the first person who really was able to help me manage and cope with a lot of that anger.

Dr. Ginger Garner PT, DPT (23:46)

Yeah.

Katie Boyce (23:55)

She was like a four time cancer survivor. So she really understood what it meant. And she was into some things that were a little bit weird to me at the time, like meditation. But I said, okay, I’ll try it. You know, she always approached it from a science perspective, which she knew I needed. So she helped me so much during that time. But also for me, I got sober and my sobriety group was another huge part of that.

Dr. Ginger Garner PT, DPT (24:01)

Yeah.

Katie Boyce (24:25)

because there’s so much embedded anger and resentment. My resentment for the medical community was literally, I would say it a lot, it was destroying me in many ways worse than endometriosis was because of the way that I was trying to cope, right? With the rage, the anger, the alcohol, the constant, I’m gonna do this to show them, right? This need to make, want to make them all suffer.

Dr. Ginger Garner PT, DPT (24:41)

Yeah.

Mm.

Katie Boyce (24:55)

and for the way I had suffered. And fortunately, know, years and years and years of, I’m coming on 10 years of sobriety and thank you. And, you know, a few different therapists now as life goes on and I move and whatnot. And fortunately that has given me a lot of the tools, but a lot of that I had to do on my own and get there on my own. And…

Dr. Ginger Garner PT, DPT (25:05)

Congratulations. Yeah.

Katie Boyce (25:24)

You know, today it still rears its ugly head sometimes, every once in a while, because it’s so deeply rooted. It was so painful that to this day, I actually, for my own mental health, I can’t go to an OB-GYN. I can’t go to an OB-GYN office. I tried, I did surgical device sales for a little bit, and I would have, I mean, I’m medicated, I go to therapy, and I would still have.

Dr. Ginger Garner PT, DPT (25:40)

Hmm.

Katie Boyce (25:52)

a physiological stress response if I walked into an OB-GYN office. And yeah, it’s rage, it’s anger, and it’s being scared. So I do my best as an advocate to let patients know if they’re the same way. Obviously, I’m not a mental health professional. See who you can work with.

Dr. Ginger Garner PT, DPT (25:58)

That’s powerful.

Katie Boyce (26:16)

But I also reassure patients that it’s okay to find a provider. There are primary care providers out there and family physicians who can do those exams for you. You don’t have to go to the OB-GYN because if you have that kind of deeply rooted trauma, know, I, so it’s like I’ve overcome all of these things and I’m so proud of that, but I get right, I get taken right back just by going into an OB-GYN office.

Dr. Ginger Garner PT, DPT (26:30)

That’s right.

the incredible amount of just like inner wisdom that you have.

built resilience that you’ve gleaned from that entire experience. It’s like, I just want to stop and go, that’s amazing. That’s amazing that you have made that journey. And that kind of, I don’t even want to say progress, because you were a wonderful whole person then, and you’re a wonderful whole person now. It’s just that you had to deal with all of these variables in between that weren’t your fault. You didn’t.

just obtain endometriosis on the street corner somewhere, or eat the wrong thing or not sleep enough or do whatever. we know of all those theories that have been debunked now. mean, it is what it is. It’s there when we’re born. So I just wanna applaud and congratulate and just say that’s amazing that you have made this.

A lifetime’s journey, it feels like, in just a few years, really.

Katie Boyce (27:53)

Yeah, it’s a lot. But I really mostly share that so that others who may be struggling the same way aren’t as ashamed. I’ve met quite a few who do utilize alcohol as a coping mechanism. And I want to tell everybody that you’re not alone. It’s OK. You’re not inherently bad for that. You’ve been dealt a bad hand.

Dr. Ginger Garner PT, DPT (28:05)

Yeah.

Yeah.

Mm-hmm.

Katie Boyce (28:22)

we can work through it, you know? And I worked through it my way and I know everyone works through it their own way, but I try to, I guess the way to put it is I’m just trying to de-stigmatize. know, yeah, there are people out there who did find ways to cope. You know, good for them. They ate well, they did their yoga, they did all the right things. No, I was not that person.

Dr. Ginger Garner PT, DPT (28:34)

Mm-hmm.

Katie Boyce (28:46)

And it’s okay if the other people aren’t either, you know? I was hanging out in rundown dive bars. That was my thing. And so I like people to know that it’s okay. You know, it’s hard when, especially in the endometriosis community, we’re surrounded with a lot of the wellness community, wellness culture, and it can be unrelatable for a lot of people that are, I might be in this, in between, because those things can be really expensive or unattainable.

Dr. Ginger Garner PT, DPT (28:49)

Yeah.

Mm-hmm.

Right, that’s the, yeah, when you said unrelatable, the first word that popped into my mind with some of the just take care of yourself was inaccessible, you know, and unaffordable to a lot of people. And so bringing this information directly to them to just be able to say, you know, if the GYN is, you gynecologist, if your GYN is triggering, because that’s what you’re describing essentially is everyone has those triggers.

Katie Boyce (29:27)

Yeah.

Dr. Ginger Garner PT, DPT (29:43)

just across the spectrum, then yeah, go see your PCP, go to a nurse practitioner, you could see a PA, you could just in a general practice. There are so many different ways to approach it. Same thing with mental health, talking about the emotional and psychological and spiritual load. There are so many different mental health directions that you can go. I’m not sure if you, this is not even a question that I had planned to ask, but there’s so many different

approaches, whether it is cognitive behavioral therapy or acceptance and commitment, you know, ACT therapy or EMDR, eye movement desensitization, hypnosis. Like people find so many different types of therapy beneficial even combined with some of the mindfulness, some of the meditation, that kind of thing. What really ended up resonating with you?

Katie Boyce (30:40)

So.

This for me can get a little bit complicated, mostly because I always am afraid it might be controversial for some people. But for me, really was doing a 12 step program. for me, was I was doing CBT was my main, know, my with my what I did with my counselor and it was brilliant. That helped mostly with.

Dr. Ginger Garner PT, DPT (31:02)

Mm-hmm.

Katie Boyce (31:12)

tools, right? That provided me with a lot of tools for working through the moment or planning and a lot of managing. But my 12 step program, that’s what really helped me with that spiritual component that I was not. was self-proclaimed very loud atheist up until this point. And that was hard for me, right? A lot of anger there.

Dr. Ginger Garner PT, DPT (31:40)

Yeah. Yeah.

Katie Boyce (31:41)

in a spiritual sense. that helped me and I worked with, you have a sponsor in these 12 step programs. And so I had a sponsor and we worked through a lot of that and she was very much what I needed during that time of somebody who had also been there, different life circumstances when it came to health, but also not able to cope with life and never judged me for any of the things I had done. So it gave me an opportunity to

Whereas my relationship with my counselor, would share things with her, but we know just like in endometriosis world, being able to share with somebody who can relate is very powerful. And so I was able to share my deepest darkest with an individual who just sat across from me, didn’t even flinch. Things that I thought were just horrific and she’s like, yeah. And I’m like.

Dr. Ginger Garner PT, DPT (32:20)

Mm-hmm.

Thank

Katie Boyce (32:35)

So I provide, and that is one thing that I try to provide today for others, right? There’s nothing you’re gonna tell me that, you know, if we’re trying to find you a provider or we need to talk about your medical history, there’s nothing you’re gonna tell me that I’m gonna flinch. But she helped me with that. And so then I began to trust another human, right? And then we went through a lot of my resentments and that isn’t something that I had done in therapy. So, and these programs, there’s a lot of writing out. I actually had to write out, you know,

Dr. Ginger Garner PT, DPT (32:36)

Yeah.

Yeah.

Katie Boyce (33:04)

What are people or institutions or thoughts like schools of thought that make you angry? And believe me, a lot of it had to do with the medical, right? And it was like, all right, list them out. And then another column was what did they do to you? Write it out. But then there was this third column. It was like, what was your part in it? I was like, wait a minute. Okay. Wait a minute. Okay. Wait, wait, wait. And then I took a step back.

Dr. Ginger Garner PT, DPT (33:15)

Wow, yeah.

Ha ha ha.

Katie Boyce (33:33)

And I was able at that point to say, you know, take a look at a bigger picture here. If I didn’t like the way I’d handled something, how could I have changed that so that, you know, in the future going forward, I can be a person who’s not full of that rage and anger. And instead of letting that monster, those thoughts and that rage feeds that. And if I can not engage in that, or if I can starve,

those thoughts, then I can have a more peaceful life. And I know that might sound a little bit convoluted, but I had to get out of a state of it just eating me alive. And so the, you know, my cognitive behavioral therapy gave me a lot of those important skills that I needed, like how to take action. But my program that I did in getting sober is what helped me really come to this spiritual, more peaceful place. No, I am not a saint.

Dr. Ginger Garner PT, DPT (34:05)

Mm-hmm.

Katie Boyce (34:32)

by any means. But now what I try to do are I try to, you know, engage in behaviors that aren’t going to make me feel bad, right? Or engage in behaviors that I will regret because I don’t want to let that rage against the medical machine rule me anymore. I feel like one of the greatest things I can do on the other side of this with all that medical trauma is to move above it.

Dr. Ginger Garner PT, DPT (34:44)

Mm-hmm.

Yeah.

Katie Boyce (35:01)

in any way I can. And so whenever I’m talking to somebody else about it, I don’t ever try to impose how I did it, but I like people to see, I went from a person who was adamantly atheist, there’s no way, there’s no spiritual anything out there to, that’s what I had to do. I wasn’t really open-minded to it at first, but that’s what I needed to do to heal. so whenever I talk to somebody, I don’t care what somebody needs to do.

Dr. Ginger Garner PT, DPT (35:03)

Mm-hmm.

Katie Boyce (35:29)

I will always encourage anybody to do what they need to do to get to that point where you have an improved quality of life, ultimately, right? We can live day to day. It’s not perfect. But also that wonderful physician I had, he told me one time, he said, I don’t care if putting a paper bag over your head makes you feel better. He said, I won’t judge you for it. He’s like, as long as you’re not harming yourself or somebody else, I’m not going to judge you for whatever you’re doing at home.

that brings you an improved quality of life and joy. And I like to take that to heart as well, because I know that it can be easy to judge others and the way they’re doing things, especially when you get to a point where you’re starting to feel well. I see a lot of people want to take what they’ve done and tell everybody that this is what you need to do now. I it all the time with coaching and selling and diets and everything. There is, and I get that because I know how exciting it is to finally have your epiphany.

Dr. Ginger Garner PT, DPT (36:14)

Do the same. Yeah.

Well, there’s a lot of that out there. Yeah.

Mm-hmm.

Katie Boyce (36:27)

But I’ve learned that it’s more important for people to find it on their own, what works for them.

Dr. Ginger Garner PT, DPT (36:33)

Yeah, I think that’s a great summary statement. I mean, when you started to tell me the way that what your strategies and what your coping was, I just saw your face, for those of you not watching the video, I’ll just tell you, I saw Katie’s whole face and just kind of dimension just shift. You were even brighter and more sparkly than you were before. It was like it just shifted and changed.

what you were describing with that anger and the rage, it reminded me of something from some of you may be familiar with internal family systems or IFS, where that person would be like the firefighter, like the manager, the person that comes out and is like, I got this, I’m gonna handle this. But the firefighter doesn’t always handle it in the best way, right? And we all have a firefighter, right?

Katie Boyce (37:26)

Yep. Yep. Yep.

Dr. Ginger Garner PT, DPT (37:28)

We also have a little inner child too that would get quiet and smaller. And I think that’s oftentimes how we end up feeling in the healthcare system when we have institutional betrayal or what I’ve heard called institutional betrayal where the place that you go to be safe is the place where you’re harmed. That’s a massive betrayal. That’s as big as betrayal in an intimate relationship, et cetera, right? It’s huge.

And to be able just to identify that if you’re feeling these things, if you’re feeling the anger, you’re feeling the rage, that we’re not condemning any of those feelings, they’re all really good. They are catalysts to get you to another place, right? If we didn’t have them, that would be a whole other issue, right? It might be more of the depressive side of things where you feel stagnant and stuck and you can’t move past, but the firefighter is there for a reason. And so,

I just want to encourage everyone that if you’re listening to this and you’re struggling with endometriosis or you think you may be, to embrace those things and to know that they’re like Katie, like you’re saying, there’s dozens of different pathways to get to the other side. And I just thank you for sharing that unique story because…

We hear of all of the typical pathways, which is the ones I started out listening to, right? We hear of all those typical pathways. And I think 12 Steps, which I’ve heard of used in many different capacities beyond just alcohol issues, to be really super helpful relationally, like socially, being able to move forward in the way that then feels like you, instead of the…

Katie Boyce (39:05)

Mm-hmm.

Mm-hmm.

Dr. Ginger Garner PT, DPT (39:19)

the firefighter you, right?

Katie Boyce (39:21)

Yeah, exactly. I didn’t know there was this other component to me that could be a good friend, you know I had there was empathy sometimes deep down inside that I didn’t know what’s there but And I also like to share with people because a lot of the 12 step can be scary because there’s a God component People feel like there’s a God component and I always make sure people know if it’s something that you’re interested in pursuing There are agnostic groups. There are atheist groups. There’s all sorts of inclusive groups now

for those 12 step programs because they have been found to be super effective in a lot of ways. So I’m glad that it was taken and expanded so it was more accessible. And another thing I like is that it’s free, right? And they’re in all parts of the city. They’re not in just the affluent areas. They’re not just in the other areas that maybe…

Dr. Ginger Garner PT, DPT (40:00)

Yeah.

Yeah.

Katie Boyce (40:12)

I know I’ve met people who are like, I’m afraid to go to that area. That’s okay. They’re all over usually, you know, and it’s a free resource. So just something that I like to put out there because a of people don’t know that there’s an option now for it to be, know, agnostic or atheist or something along those lines. So, you know, it’s a free resource because not everyone can afford. know mental health unfortunately can be expensive.

Dr. Ginger Garner PT, DPT (40:17)

Yeah.

Yeah, it’s super expensive, especially as insurance decides they’re gonna cover less and less, which is also a problem in endometriosis too. So yeah, I mean, that’s a whole other area we could like raise the curtain on and discuss. I think that in terms of what I’m curious about, because I have like a blue million questions here that we will never get through, but I wanted to ask in terms of like,

Katie Boyce (40:36)

Mm-hmm.

All right, yes.

We can try.

Dr. Ginger Garner PT, DPT (41:01)

what changes because I don’t want to speak for everyone with endometriosis, but I can probably as a person who’s been through it.

you’ve probably more likely than not experienced a institutional betrayal where the place you went to get help didn’t help you or medical gaslighting where they just dismissed you, marginalized you, shamed you, or in some way made it a whole lot worse and then ignored you and didn’t give you the care you need. So I think more of us than not have experienced that. So what in your ideal world would you, how would you like to see the medical community approach

know, diagnosing, treating, how should they be approaching people with endometriosis?

Katie Boyce (41:51)

So ideally, that initial provider that somebody goes to, right? So say if you were young like me and you’re presenting with these gastrointestinal symptoms that nobody can figure out, right? They’re vague symptoms or symptoms that get worse at some point in the menstrual cycle, not just on your period, but maybe with ovulation or any other point in the cycle. If there’s like a cyclic thing occurring at a young age,

Ideally in the perfect world, you would go to your primary care physician, even a pediatrician, and they would say, this sounds like it could be endometriosis because everything else is coming back normal, right? So at that point in a perfect world, we would have a referral system for surgeons who are very familiar with endometriosis. And I know surgery or saying surgeon can sound…

Dr. Ginger Garner PT, DPT (42:34)

Mm-hmm.

Katie Boyce (42:48)

like, we’re gonna rush into surgery. That’s not the case, right? We do the same thing. If you think you have a back condition, you’re going to go to an orthopedic surgeon, right? Doesn’t mean you’re gonna have surgery right away. We’re going to investigate what’s going on further. And I feel that way. It should be that way for endometriosis or anybody presenting with these vague symptoms that nobody can seem to figure out. Ideally, you know, an endometriosis surgeon who is familiar with the ever-changing better technology and imaging we have now, right? Or even just doing

Dr. Ginger Garner PT, DPT (43:14)

Mm-hmm.

Katie Boyce (43:17)

exams, physical exams, can sometimes they can feel nodules, they know what to look for, what to feel for, even, you know, if it’s a patient who’s comfortable with it, a transvaginal ultrasound, but providers who have the expertise in endometriosis to know what to look for, right? That can be indicative of it. And then, because we don’t need to be doing unnecessary diagnostic surgeries, right? Where they just go in and look and maybe burn what they see, that’s not helpful for anybody.

So ideally at that point then they have surgery to get it removed before the disease has the chance to spread or progress or cause debilitating symptoms that should never be addressed, right? Or again, maybe that patient doesn’t want surgery. They could be offered, of course, any other medical treatment. Ideally one day maybe we’ll have a non-hormonal option, but as it stands, we currently do not.

that’s, I feel like that’s the trajectory it should go. It should not be bouncing around all these different doctors and bouncing around to different specialists, right? We’ve got all these different symptoms that I see. And I see this a lot when I’m working with somebody as their advocate, they’ll have like five different specialists because they think they have five different conditions. And while I’m not a physician, we can typically take a step back and a look at this and say, hmm, what could be crossing over here? Right. And some, a lot of the times,

Dr. Ginger Garner PT, DPT (44:34)

Mm-hmm.

Katie Boyce (44:44)

Like I was mentioning earlier, there are side effects from certain medications that are actually causing a new symptom. ideally, we can consolidate that so the care is less fractured, right? And then, you know.

Dr. Ginger Garner PT, DPT (44:57)

Right, yeah. Because that’s one of the biggest problems is time of first symptom or sign to time of actual diagnosis can easily take a decade and it shouldn’t. And you mentioned another really important verb, which is spread. Endometriosis is of course not cancer, but it acts like it in that it spreads and it can impact so many different organs.

all the way up to the respiratory diaphragm, into the lymph nodes, et cetera. And the earlier we can intervene, and I think in the world of healthcare overall, I think early intervention is one of the most important phrases that we can be using. Early intervention, early intervention is catching it early, taking care of it so that women can go on to not have to live in survival mode for the next five, 10, 15, 20, 25 years. They can move on to thriving mode.

and get all the follow-up care that they need to. Yeah.

Katie Boyce (46:01)

Absolutely. think one of the, I do like to sometimes point out a lot of people when they hear spread, they do get afraid that it can just like get in the bloodstream and spread, you know, similar to cancer. I always tell you, it doesn’t metastasize the same way, right? So, you know, we just don’t know. Maybe there’s endometriosis in a part of our body that just hadn’t presented symptoms yet, but can later, right?

Dr. Ginger Garner PT, DPT (46:15)

Mm-hmm.

Katie Boyce (46:27)

But the progression, know, people get a lot. A lot of people ask me about that. How does it progress? like, well, it’s a, it’s actually a, it’s a process where it’s basically the best way to put it, you know, is it’s a constant inflammatory damage repair response. And as that happens, it can just, you know, greater and greater, greater tissue damage throughout wherever it’s occurring. And so it’s

Dr. Ginger Garner PT, DPT (46:49)

Right, right. Even if it’s not a lesion, lesions love to spur adhesions in creating scar tissue. So you end up with secondary scar tissue issues which can be in various areas of the thoracic, up into the chest, for those of you not in healthcare, and also down into the abdominal and pelvic cavity.

Katie Boyce (47:05)

yeah.

Dr. Ginger Garner PT, DPT (47:18)

But the good thing is we can have very good outcomes with skilled excision and prehab and post-op rehab. There’s so much that can be done. It’s an exciting time to be alive right now versus even 10, 15, 20 years ago when we didn’t have what we have now. So it is a hopeful message overall.

Katie Boyce (47:40)

It is, right. And like I was saying with imaging improving, there’s better planning, right, before going in to surgery, looking.

Dr. Ginger Garner PT, DPT (47:47)

Right, yeah, we hope that the trajectory of imaging and where it can go in terms of helping with surgical planning and even in the future, perhaps even diagnostic capability is immeasurable right now. So it’s a very exciting time. It’s a very hopeful time.

What is some advice, like this is a good closer question, think, is what are some of the advice that you would offer someone who’s recently been diagnosed or maybe actually seeking diagnosis because I think that maybe the latter is where a lot of women are is like, they’re not sure. What would you say?

Katie Boyce (48:37)

My first thing I always say is, have we been tracking? Have we been paying attention and kind of journaling what are the symptoms and impact on quality of life? Just because most importantly, when you decide to take the step of looking for a provider, they’re going, that can be really invaluable data. And we forget a lot of what we experience on the day to day. So I feel like it’s important to keep track of that.

in any way that we can, whether that’s just like a quick note on your phone or some people do like to write it out. But then, know, something I often say is don’t panic. I know a lot of the times it gets really, really, really scary to go down some of these really horrible holes, you know. There are, yes, endometriosis is very serious. There can be very serious complications, but we also need to take a step back.

and look at it from the best we can, a non-emotional way of, what is my plan going to be for this? And ideally it would be, let’s just find the closest expert, know, let’s look through my insurance and see who’s in network and where can I go? Unfortunately, we can’t do that with Endo. So a lot of the times it’s who, you know, who’s accessible to us.

Dr. Ginger Garner PT, DPT (49:54)

Mm-hmm.

Katie Boyce (50:01)

And I know everyone’s always saying, don’t Google your disease or don’t use the internet. Unfortunately with endometriosis, we really have to utilize those resources. So what I, something I say is, look for maybe a local group if you can, but go in to any like social media group or platform, go in knowing that there’s going to be maybe something that’s traumatic or triggering. So.

Dr. Ginger Garner PT, DPT (50:10)

Yeah, you do.

Katie Boyce (50:28)

there are going to be stories that might be hard, but they can also be a really great resource for finding providers who are familiar with endometriosis. So if that’s a head space someone’s able to be in, go in there, at least search the group for words for providers or OB-GYNs or something. if you’re looking for that diagnosis, because there’s the off chance that no, we don’t really have a specified endometriosis specialist.

I guess like it’s hard to say what that is because there’s not a board certification for being an endometriosis surgeon. So it’s kind of Wild West out there. So a lot of the times what I suggest is I’ve got like on my blog or even a free endometriosis course that I made with a friend, questions to ask.

So if you’re seeking that diagnosis, there’s some questions that you can ask when you go in and be like, these are the symptoms I’m experiencing. These are cyclic, these other ones aren’t cyclic. And if I think it’s endometriosis, how do you go about that? Some will say, well, surgery. Some will say, well, let’s do an imaging protocol. And some will say, let’s just try birth control and see if your symptoms go away, right? Ultimately, that’s going to be on the patient to decide. But I want patients to know going into that, if you don’t want birth control and they are

pushing you that it’s okay to find a different provider, right? That’s my advice, right? Because there are so many unknowns with endometriosis, like patients to understand that yes, you are speaking to the doctor, but there is no such thing as like an all-knowing individual in endometriosis. So your desire, like what you want matters, and there’s nothing wrong if you’re not okay with their plan of action. So if you’re going in, any physician that’s pressuring a certain treatment, it’s okay to say no and go elsewhere.

I think that’s the most important thing I try to get across is that it’s informed consent across the board. And that means you are being given multiple options and the ability to go home and look through those options for yourself and try to do so in a way that’s very systematic. a lot of like, I like to do like either Venn diagrams or columns when I’m working with someone trying to make their, you know, their decision. And because I want to tell everybody let’s find

an expert surgeon that’s got an exorbitant amount of experience in this, and they’re gonna be able to cut out your disease and be done. Unfortunately, we’ve got accessibility to consider, we’ve got financial barriers to consider, so it’s really just a sitting down and making a list and seeing which providers we can get to, and then what options they’re presenting, and if I think something that is important to remember, and I’m sure everyone, if they’ve…

listen to your podcast, I know Heather Guidone. She was the first person to really remind me that doing nothing can be an option. So yes, that can be really scary with endometriosis, if, but if you can find a provider who’s willing to monitor, you know, keep up with you, keep up on, you know, making sure your bowel functions okay, kidney function’s a big one with endo, just kind of keeping an eye on things if you’re not ready for any of the options that have been given to you.

That’s okay, right? And so I just like patients to know that you don’t have to rush into a diagnostic surgery because we know that doing surgery with someone who’s not necessarily skilled in endometriosis can potentially cause more damage in the long run. So I like patients to be able to, that’s that don’t panic, right? Let’s take a deep breath and let’s make a plan here so we’re not rushing into something that could potentially make it worse.

Dr. Ginger Garner PT, DPT (54:03)

Mm-hmm.

Yeah, absolutely. To know that there’s, to obviously, I mean, the word that comes to my brain is always empowerment, that you always have options, that you’re in charge, that you can hire and fire your healthcare providers, and then that power rests with you is important. If I can ask one more question, I have one more question. How, maybe what is a better way to put it? What if you,

What have you learned about yourself through your experience with endometriosis, do you think?

Katie Boyce (54:52)

So I’ve learned that I’m that, as you mentioned earlier, that firefighter. I’ve learned that when it comes to being an advocate, that that does not mean taking what I’ve done and saying that this is the way it needs to be done. And I am learning every time I work with somebody new from a different background, different life experiences, I am always learning that

Dr. Ginger Garner PT, DPT (55:09)

Hmm.

Katie Boyce (55:23)

even more in depth than I knew before, that there are so many nuances and variables to each person’s story and situation that I can’t stand on my soapbox and just say, this is the way you need to address your endometriosis. And I’ve learned that true advocacy is me listening and then helping them.

based on what the information is that they’re providing me, then taking that and finding the information that they may not have access to, providing that for them. That is an advocate, speaking for them, right? But only what they want me to say. Doing I offer, and then I let them tell me what they’re comfortable with. When I started this, I thought advocacy meant I’m gonna scream from the rooftops.

And this is what I’m going to say. And I want everyone to do it this way because this is the right way. That’s how I started. And there’s a lot of growth in that. this journey has taught me. This journey has been very humbling, right? Like I was saying, you get to the point where you’re so excited that you finally found something that worked for you and then you want everyone to do it. I guess it’s definitely been the humility part of it.

But that makes me a better advocate and it makes me a better friend. Being able to remove myself. It’s so hard to do that for me because I’m not like you said, I’m not one that wants to rush in and take charge. I want to do it. And I’ve had to learn. will I will point blank say if somebody comes to me and they’re in a certain situation, I’ll say, do you want me to listen?

Dr. Ginger Garner PT, DPT (56:53)

Yeah.

Yeah.

Katie Boyce (57:14)

as your advocate or do you want me to give action items as your advocate right now? Because you have to tell me otherwise I’ll just go into action. I know that might not be the best thing you need to hear right now. So that’s what I’ve had to learn.

Dr. Ginger Garner PT, DPT (57:25)

Yeah, yeah, yeah, because sometimes we have to share some our story with someone or hear that story and we need to cycle through it two or three times or 12 or 24 times before then we realize, we realize, I am now ready to take that action step. So I think that’s a really wise thing that that you’ve developed, you know, through this kind of whole.

universe of resilience that is unique to endometriosis. Right? That’s kind of like the grit. You’ve got resilience and grace and empathy and tenacity and all those things. We could just about turn that into an acronym for Endo. It’s uniquely, yeah, it’s uniquely all its own. There’s, yeah, there’s a particular grit about women who’ve had Endo and have gotten to kind of quote the other side of that. So,

Tell everybody where they can find you. Speaking of advocacy.

Katie Boyce (58:28)

Yeah, well thank you. So the easiest way to access me is through Instagram, at EndoGirlsBlog. For just general information, EndoGirlBlog.com or EndoGirlsBlog, either one will direct you there. I also am listed for my advocacy services as a board certified patient advocate.

I am on I think like greater national advocates website, GNAW and NAHAC. I can be found there. And also I’m not very active on Facebook. So I really try to let people know that because I’ll realize that I have missed messages there, but definitely Instagram is the easiest way. And that’s where I put a lot of my, the most of my educational information.

Dr. Ginger Garner PT, DPT (59:11)

is the go-to.

Okay, awesome. And we will also put links to your resources and how everyone can contact you in the show notes. Katie, thank you so much for being here, for sharing the time, for braving these decades and then just being so open and transparent and sharing. I appreciate it.

Katie Boyce (59:24)

Thank you.

Thank you for having me.

Dr. Maria Rovito, PhD (00:14)

Thank you. Thank you. yeah, I’m glad to be here.

Dr. Ginger Garner PT, DPT (0:21)

So glad you’re here. Yeah, my gosh, this is going to be an amazing conversation. So y ‘all, let me tell you just a little bit about her. We could completely geek out with her bio.

Dr. Ginger Garner PT, DPT (00:28)

And so I’m going to give you the condensed version. But here we go. Dr. Rovito is an instructor of medical humanities with a PhD in American studies from Penn State University, specializing in medical humanities, disability studies, and women’s and gender studies. Her dissertation, which inspires me, title, Alone, Free Woman, yeah, analyzes the stigmatization of endometriosis.

Reframing it as a chronic pain disorder rather than an infertility issue. Huge, huge. We’re going to get into that. Using feminist disability studies and archival research, she connects gender bias and medical practices to the eugenics movement. Another one too big, big packed punch. Dr. Rovito has published on Sylvia Plath and medical racism and has presented widely on feminist disability studies. She serves as a board representative for the Women’s and Gender Studies Caucus of NEMLA, Northeast Modern Language Association. Welcome, Maria.

Dr. Maria Rovito, PhD (01:35)

Thank you.

Dr. Ginger Garner PT, DPT (01:36)

So I have to tell y’all the first time that I heard Maria speak, I was at the endo summit last year and I was sitting, I remember I was sitting on the back right hand corner with a bunch of my colleagues, Sallie Sarrel, who you’re going to hear from this season. If you haven’t already, she was on last season and I was just enamored. I was like, this, this, this brilliant mind has got to come on my podcast. Hopefully she’ll agree to do that. So here you are. Thank you for being here.

Dr. Maria Rovito, PhD (02:10)

Thank you. You know, I’m glad to be here. I love talking about Endo with anyone who will listen to me, so. Yeah. yeah, definitely. Yeah. yeah. Yeah.

Dr. Ginger Garner PT, DPT (02:17)

Yeah, well, we need all the people listening at this point, don’t we? So, gosh, I have so many questions too that I have loaded up in the brain here. So I’m gonna try not to brain dump a bunch of stuff. We’ll go in a metered, calm fashion here, but what inspired you to focus your dissertation on endometriosis and its cultural stigmatization?

Dr. Maria Rovito, PhD (02:44)

Yes, that’s really, there was a lot behind that. So the first year of my PhD was when I was diagnosed with endo. I had a laparoscopy in the summer of 2020, which was pandemic, you know, which medically in general was a nightmare. But for endo was like even worse because no gynecologist wanted to see you. 

So, I was diagnosed and I was just very frustrated with how long it actually took me to get diagnosed. you know, I was just, you know, like looking around at the library at our university one day and I was like, well, why, like, why is it like, why did it take me so long to get diagnosed? And why is it the average like seven to 11 years to be diagnosed? And, you know, like, why is it so hard for doctors to find all this?

And it just led me down this huge, huge rabbit hole of first off how ingrained misogyny is into not only our medical system, but our culture in general. I mean, we could talk about medical misogyny more, but just, you know, basically like, you know, I don’t think the world really cares that, you know, people assigned female at birth are in pain in this way.

You know, if we look at childbirth too, we don’t. Society doesn’t really care that, you know, like about pain like that, you know, they think it’s like part of being a woman, right? You know, like womanhood is suffering. So that was a large part of that for me. And it just led me down this path of finding out that this is not something that is just passively being ignored by medical professionals like

No, this is an active, you know, act of violence against people assigned female at birth who, you know, have chronic pain conditions that are gynecological, you know, as traditionally thought of. So it’s not, you know, it’s not something that, you know, not that people just aren’t aware of it or that they’re ignorant of it. 

But if you think about like why we don’t know that much about endo, you have to look at it more broadly too. We don’t know that much about PCOS. We know barely nothing about menopause. We know so little about fibromyalgia, right? And it’s not just like focused into these gynecological traditionally coded conditions. It’s just AFAB [assigned female at birth] health in general. just, they don’t know. And I don’t think, I don’t know. mean, I don’t, my question now is like, do they even want to know?

Cause I’m at this point where I don’t think this is like just ignorance anymore. I think like when looking at the redistribution of funding research money and who’s being hired to study this stuff in medical, like at medical schools and universities, you know, I mean, they could easily make more room for research on women’s health or, you know, research on chronic illnesses or research on autoimmune illnesses, but they just don’t. And it’s because they don’t see it as important. So, yeah.

Dr. Ginger Garner PT, DPT (06:18)

So that leads me to, because you did so much work on your dissertation and you’ve done so much work in general. So I’m wondering, I’m really curious about what you discovered in all of your research, your archival research and looking backwards. I know that when I looked up the history of birth in particularly this country in the early 20th century, I was appalled at what happened to women during that time and how specifically midwives who had been safely delivering babies were absolutely kicked out until they were only fit to deliver low income and babies of color. 

And then yet the death rates has increased and actually is getting worse as time goes by for women in the United States. We are the number one like top country in the world for first day infant death rate and maternal mortality, which then quadruples for women of color.

So we are not standing on any basis for providing good care for women. So, and that’s what I learned in my tiny little bit of just being, you know, becoming a mother, being a pelvic PT, being in this women’s health space. So what are some of the things you discovered in your archival research on early 20th century gynecology? That’s like part one question.

Dr. Maria Rovito, PhD (07:22)

Well, so I, anyone who knows about Nancy’s Nook, you know, when you’re diagnosed with endo, that’s traditionally where a lot of people point you to on Facebook. And any reading that you do on Nancy’s Nook is tied to David Redwine who proposed the theory that you’re actually, you know, endo is not, you know, grown out of you know, endometrium, like leaking out of your fallopian tubes. You’re actually born with that tissue and you know, it’s there from like, from you since like conception. So I always assumed that the history of Endo was, you know, Redwine and Sampson. 

And background on Sampson, he was the one who proposed the retrograde menstruation theory in the 1920s, which is the idea like, hey, you know, when you have a period, the endometrium and, you know, period blood goes out your fallopian tubes and these end up being attached to your ovaries. And then it attaches to all the other pelvic organs around that, right? And like, honestly, I, you know, there’s really not a good one single history about endometriosis and AFAB health, like in general. So that’s, I was just going into these archives and libraries thinking like, hey, I don’t know, maybe Sampson wrote something about this, like we’ll see. 

But no, I mean, I did a fellowship at Harvard Medical School where I studied at their Center for the History of Medicine at their library. And I found the most eugenic comments about women with endometriosis, especially from one physician at Harvard. His name was Joseph V. Meigs. He was there like mid 20s to about 1960. 

And he, well, first off, he was the chair of the gynecology department at Harvard. And second off, he was a surgery instructor. And he did study, part of what he studied was endometriosis. He also studied cervical cancer and hysterectomies. And the, I swear to God, the writings he published about women and women of color, I’ve never, I’ve never seen the amount of misogyny and racism from a doctor ever in my life. I will be quite honest with you. Where do I even begin? He compared endometriosis and rhesus monkeys to black women. What else did he do? Well, he told the New York Times in 1948 that, the white race will be in decline because of endometriosis and the cause of endometriosis, as he said, was that, you know, all these white educated women are focusing too much on their careers and why not have a baby when you’re 25, right? Like, you know, if you wait anything past 30, you know, you’re like, you know, expired, you know? So like get cracking, right? Like, what do mean you want to go to school? 

So that’s where the concept of like endo being a career woman’s disease, which was it started being defined that way in about the 1960s or 70s. That’s where it stems from this belief that, you know, if women dedicate, you know, parts of their lives to being educated and their careers, and, you know, postpone, like building a family or getting married or whatever that that would lead to endometriosis and like the the scientific possible thinking behind that was, you know, the more times you’re pregnant, the less time you have that where you’re actively bleeding. So that’s like, you know, one, that’s like the justification for it. But I mean, it’s, it’s, it’s, it’s so deeply misogynist.

And he called black women less intelligent than their white counterparts. Actually the first time endometriosis was like mentioned in pop culture was because of him. He was interviewed in the New York Times like October 1948. And the very first mention was like, it was about endometriosis being like a cause of the decline of the white race.

And see the insidious thing about all this is, if you look at the battle for reproductive rights in this country, that is slowly becoming more prominent, this idea, right? That, well, if you’re a white woman, you need to create children because there’s this great fear in this country of people of color, not being the minority anymore. So it all stems back together. 

Dr. Ginger Garner PT, DPT (13:08)

It’s a fair statement. It’s a fair statement Maria because if you look at the value of women it has always been tied to fertility, always. And if you look management of endometriosis even now in certain parts of the world Laparoscopy and excision even ablation mind you which is not the gold standard excision is our gold standard even the blation is being questioned if

Dr. Ginger Garner PT, DPT (13:52)

women aren’t interested in pursuing fertility, which means in the 21st century, right now in 2024, in other parts of the world, and I’m sure in gynecology offices all over this country, they are saying, well, you know, it will stop with menopause and you don’t really need to do anything unless you’re interested in fertility. So that still means that attitude is pervasive and disgusting and gross and it persists. So it’s a fair statement because

Dr. Ginger Garner PT, DPT (14:21)

endometriosis creates pain and they’re basically denying women pain relief and possibly total pain relief. It’s possible. That’s based on whether or not they’re interested in giving birth and getting pregnant. Yeah.

Dr. Maria Rovito, PhD (14:25)

Yeah.

Yeah.

Right. Right.

Yeah, exactly. Yeah, and it’s aggravating and it shows that they don’t care about you unless you’re, you know, worrying about reproduction and fertility and like, you know, how you can serve a man in that capacity. And also I will say just like side note to that, you know, how we define painful sex for a lot of people in the medical field is penis and vagina sex, right? So,

Dr. Ginger Garner PT, DPT (15:02)

This is… This is…

Dr. Maria Rovito, PhD (15:05)

You know, to solve painful sex is more about, well, why not make your male partner happy, right? You know, like, you know, maybe you have stress or anxiety and, you know, therefore you can’t, you know, achieve an orgasm, you know, through that. And maybe that’s why you’re not, you know, getting wet correctly. And it’s all because, you know, like that’s what men want, right? You know, and…

Dr. Ginger Garner PT, DPT (15:27)

If I had a dollar, a penny, a whatever, a nickel, a dime, for every time a patient has come in and sat down in my office and talked about their medical gaslighting from an OB -GYN who just said, and we’ve all heard it a million times, just, painful sex, which they assume is penetrative sex only. have a glass of wine and relax. my, my. And we can swear on this podcast, by the way.

Dr. Maria Rovito, PhD (15:36)

I know, I know, I know. Yeah. And yeah, it’s awful. And I mean, I’m even working on this a bit now, just like, you know, like, because a lot of insurance policies, you know, like in this area of the country, they explicitly state like, we will not cover any, you know, women’s health issue unless you’re trying to get pregnant, right? So like, and it’s even, first off,

Dr. Ginger Garner PT, DPT (15:55)

So.

Dr. Maria Rovito, PhD (16:20)

Okay, a lot of the policies don’t even mention laparoscopy. They mention laparotomy, which I mean, is anyone really still doing that now for, you know, endometriosis excision in 2024? Like, okay, first off, I have a question that, and for me, because I just had my total hysterectomy about four months ago, anything you need gynecology after a hysterectomy, like even if it’s PCOS, know, PMDD, whatever, they will not cover because it’s like totally like they view hysterectomy as a cure for all gynecology issues and anything after that they’re like, yep, now you’re cured. Yeah.

Dr. Ginger Garner PT, DPT (17:01)

Yeah. Yeah. Insurance is something that, gosh, we could definitely spend so much time discussing because women with endometriosis, and I’m very transparent about my own journey with that, we end up paying quite a bit. And it’s not that some expert excision surgeons taking advantage of that situation. It’s no, they can’t even get paid at all. And so in order to be able to do a surgery, appropriately to save women and their quality of life in their lives, they have to work outside that system. so in order to access them, people are having to, you know, borrow money, take second mortgages, to pay out of pocket because of the frank, willful ignorance or whatever we want to call it on the part of insurance companies where if an expert surgeon who has dedicated their life to properly excising this stuff and saving women,

Dr. Ginger Garner PT, DPT (17:59)

If they’re only going to offer the cost of an ablation surgery, which is they might cost $1 at them. I know I’ve seen, I’ve seen, you know, my bills, et cetera. I’ve seen patients bills. see people with endometriosis every single day in my own practice. If they are only willing to, to throw that change at them at $1 when they just spent eight hours in the operating room. That’s horrible. That’s horrible for everybody. Right.

And so that’s like a whole other can of worms we could crack. But I think that your research and what you’ve uncovered, I was just like taking photos with my phone when you were presenting, I was like, yes, this is exactly what happened with birth in the early 20th century. And it feels much worse with endometriosis and what you uncovered. And so you’ve touched on the eugenics and race issue, but

Dr. Ginger Garner PT, DPT (18:55)

Just explain for the listener for a second that there are out there who have not even heard of that phrase, eugenics, who don’t understand what that means and the enormity of the weight that it carries. Will you just bring that in to focus for us on eugenics and race?

Dr. Maria Rovito, PhD (18:56)

Yeah, definitely. So the idea behind eugenics is to eradicate certain populations that we deem, quote unquote, I will do scare quotes, like unwanted, right? So, you know, historically it’s often been people of color, people with disabilities, know, people who have emigrated here from different countries, right? So essentially anyone who is not like, the white Anglo -Saxon Protestant cisgender male is, you know, one of those quote -unquote unwanted populations, right? 

So with eugenics, there was the idea to like, you know, forcibly eradicate them. We can see this through like the concentration camps in Nazi Germany. You can see this in antebellum slavery. But also there’s the more discrete ways that is not very apparent to all of us. denying endometriosis care is one of those. Thinking about reproductive rights in this country is also one of them. And not only thinking about not having access to abortion care, but thinking about the other side of it too. Who do they not want to reproduce? Who are they forcibly sterilizing without consent?

Often it is women with disabilities, whether intellectual or mental or physical. So, you know, there’s all, there’s all, it all ties into that. and you know, I mean, it, it certainly goes beyond, you know, the Holocaust and world war II and it, it, you know, it actually started in this country during the antebellum slavery period. So yeah, it is deeply rooted in this country, but.

Yeah, think when I think about like the history of endometriosis and tying it into eugenics, I think it’s very clear that like, you know, prioritizing white women with endometriosis and them, you know, procreating versus how black women with endometriosis were traditionally viewed as like, okay, first, like they were viewed as like vresus monkeys, which is horrifying. But secondly, you know, there’s parts of that too that are still a problem today. Like, you know, black women being first misdiagnosed with pelvic inflammatory disease, which, you know, is a sexually transmitted infection. 

And what that, like, you know, implicitly states is, you know, like you’re not intelligent enough to figure out, you know, sex and being civilized and, you know, like, you know, like, well, this is just your fault because, you know, you’re being sexually promiscuous, you know, and actually, there was a 1976 article written by, he was an endometriosis surgeon. His name was, his name was Donald Chapman. He was one of the first black OBGYNs like working in the endometriosis field. And that’s what his article was about that, you know, out of, you know, out of five every black female patients he saw with endo, four of them were misdiagnosed first with pelvic inflammatory disorder. So it’s stuff like that, that all contributes to the devaluation of all sorts of marginalized populations, but specifically with endo, like women of color, right? So.

Dr. Ginger Garner PT, DPT (22:36)

Yeah, yeah. So that is a very heavy and dark history, you know, for us and that nobody can turn away from because it negatively impacts all of us. And it also should inform our policy making now. It should inform our advocacy now. And if I had to say, you know, what do you, what am I most passionate about? It would be that. It would be changing things for the future and advocating for better policy. 

So, how do you see the relationship between reproductive health, women’s health, sexual health, and their quality of life? And then this broader sociopolitical quagmire with things involving race and class and stuff, how does that evolve in our discourse, our discussion about medical care today?

Dr. Maria Rovito, PhD (23:23)

I mean, it’s so ingrained everywhere about whose bodies are valued over others in terms of triage and giving out care, right? I mean, if we think about like any type of gender bias in medicine is really there and it’s not anything kind of collogical. It’s like, don’t know what a heart attack in women looks like. It’s not traditionally how it’s viewed in men.

Or, you know, there’s the other statistic, like, okay, 80 % of autoimmune patients are women, but why do we still not know really anything about how autoimmune illnesses work, right? You know, what else? Yeah. Yeah, yeah.

Dr. Ginger Garner PT, DPT (24:26)

Yep. Yeah, there’s autism in girls not being identified, not even having diagnostic criteria that’s gender based for girls. Women with cancer wait longer for treatment. Women in the ER with the same condition as men wait longer for treatment and they wait longer for pain meds. Like we can just go on and on and on. So yeah, it should inform what we’re doing every day. 

It should inform how emergency departments are staffed. It should inform how women go in to seek mental health and what care they are given instead of being given broad sweeping types of medication, actually looking for root cause. I’ve seen too many women in my own practice who I’ve referred down to Atlanta Center for Endometriosis Care or up to Dr. Andrea Vidale here on the East Coast in New York that have been pushed all over the place that had ablations again and again and again and again.

Dr. Maria Rovito, PhD (25:26)

Yeah. Yeah. And see, for me, that is one of the most insidious things because I feel like for a lot of those cases, patients are going under expecting to have excision surgery. And when they wake up, the surgeons were all like, well, we couldn’t reach it there or we were not comfortable removing it there. So we had to do ablation. But the thing of it is, like,

Dr. Ginger Garner PT, DPT (25:47)

Exactly.

Dr. Maria Rovito, PhD (25:53)

First off, okay, you do not consent to ablation, like under any circumstances. B, if you’re not comfortable, you know, doing surgery on those areas like ovaries or, you know, connective tissues, I’m sorry, like, why? Yeah, I’m sorry, but like, why are you doing this? you know, I mean, it’s one of those things. Like that happened to me at my second surgery. So I’ve had four and you know, the last one was the total hysterectomy. 

But my second one, you know, my surgeon told me she was like, yeah, we’re team excision all the way and you know, like we’ll get everything no problem. And I’m like, okay. Well, I woke up and she said, yeah, well we had to do ablation on your left ovary. And what happened with that was it was like not even, it must’ve been like three or four months later, my left ovary.

The scar tissue built up and it adhered to my pelvic side wall. So anytime I laid on my left side, it would like, I could feel all my organs being pulled and see, that’s not right. Yeah. Yeah.

Dr. Ginger Garner PT, DPT (26:54)

That’s painful. That’s painful and means, you know, a repeat surgery. I have heard too many of those stories too, which is why, one of the reasons why, you know, we’re talking about this season and dedicating the entire season to endometriosis is for women listening who have pain, which could be pain in the bowel, which we have said in earlier podcasts this season.  Could be pain in the bowel, it could be painful breathing, not just, you know, painful cycles, but painful digestion as well. All of those things are interrelated. Tell me about, and some of the readers, listeners, where they can, because I was going to ask about publications, which is where the word readers pops out, but can you share more about, you know, your work in the general, you know, space in the contributions to things like think DivaCup and Nizz Magazine and other things that you’ve been doing. Tell us a little bit about that.

Dr. Maria Rovito, PhD (28:06)

Mm -mm.

Yeah, so I have, I try to publish both in the academic sphere and the public sphere because they’re really not, there’s really not a lot of crossover there, but I try to make it so. Yeah. Thank you.

Dr. Ginger Garner PT, DPT (28:21)

that’s not and let me just say that’s amazing and really necessary and I love that dual approach. Thank you.

Dr. Maria Rovito, PhD (28:28)

Thank you. Yeah. Thank you. And like a lot of that for me is because, well, see, if I just publish journal articles, first off, don’t even know if anyone’s actually reading them. So when I have, you know, someone on the internet read like one of my articles in Ms. or DivaCup and they message me, I’m like, well, I’m glad it helped them. So, yeah, but that’s, it’s important for me that my work actually like, is able to help someone out there because like I will admit I was that person you know four or five years ago like hurled up on my couch because I couldn’t walk from pain and I was just yeah I don’t know what to do and I don’t think there was no one in my life who understood it like no one got it you know like friends friends you know will sympathize but after a certain point they’re like yeah we don’t know and yeah just to have like someone on the internet who like even like a random forward twitter person just understand like like yeah this sucks and you’re allowed to be angry and this isn’t fair and you know this is not just you and it’s not just in your head this is a systemic issue like that would have taken off a lot of pressure from me so yeah

Dr. Ginger Garner PT, DPT (29:43)

Yeah. And I think women get into that. And I think there’s like an epigenetic, genetic thread pulled through time now that as the listener, you’ve heard about this history and where it came from, it’s easy for us to then understand that women existing today in the 21st century will easily blame ourselves for all kinds of things that we have no control over and that we had no contribution in creating the mess in. 

So I think that’s important to realize because out of all this, the most one of the most important things beyond obviously taking care of our physical health is our mental health. Yeah, that makes me interested in some of your key themes of your writing about ciloplasm as you know as they relate to like mental health and things like that.

Dr. Maria Rovito, PhD (30:12)

Well, I mean, I will just say endometriosis just trashed my mental health. I mean, just absolutely. And not only, like, because my pain was invalidated, it’s because, like, you know, it brought up the trauma of being sexually assaulted. It brought up, you know, PTSD for me. It brought up, you know, feelings of, like,

Well, why am I not normal? Like, why am I different from other women my age? know? So yeah, I I will admit there were three years, four years there where I just, I didn’t see a point of living with this pain. was just, you know, several times I really thought to myself, I was like, yeah, can’t do this anymore. So, and I think for a lot of women with these illnesses, that is often faced.

Because you have doctors telling you they’re either like, yeah, know, like, eh, it might not be that bad. Or they’re either like, well, I believe you, but I really can’t do anything, which neither of those are helpful. So, and to not have people at home or at work around you who understand those type of things, it’s mentally defeating. that’s like, see, that’s all, like, that’s like what I am trying to work at through my research, right? 

So I’m not a surgeon. I’m not like a medical doctor. I really can’t do anything in regards to like medical or surgical treatments for the disease, but I really don’t look at like why our culture has taught women to think this way about themselves. And it’s really like deeply rooted in gender roles in childhood.

You know how girls are raised versus how boys are raised, right? Like, okay, girls, want them to be good girls and to respect authority, right? And whatever a figure of authority tells them to do, like just do it don’t question them. Whereas boys, you know, we’re like, yeah, you know, like if you wanna, you know, speak up, act out, like be aggressive, like why not go ahead, right? So, but like that, that’s sort of like, you know, like, planting those seeds in childhood for us as girls, that leads us to grow up and not even thinking that we can question doctors. For me, truthfully, I was maybe 24 when I realized I could even walk out of a doctor’s appointment. If you’re raised in one of those environments, in one of those cultures where girls are not, you know, you know, allowed to question authority or allowed to say no, at least these feelings of inadequacy like, right? Like, it’s awful.

Dr. Ginger Garner PT, DPT (33:31)

It’s, yeah, it’s, I’ve experienced certain levels of that. I mean, we all do in the workplace, in the home space. You don’t even have to leave your home depending on who your support system or lack of support system is. And your parenting styles, the region you grew up in, I grew up in the South where you didn’t have a voice. And if you did, you were some, annoying childless cat lady, you know. 

And by the way, I know lots of lovely childless cat ladies and I love all of them. And so, I mean, there’s that underlying tone of stay small, stay quiet, don’t speak up. And if you do, you’re just being bossy. You even hear that. I hear that in parenting now, like if I could just take bits and pieces of what I hear parents say, you know, that the little boys in the community we talked about as having leadership, you know, potential and the little girls would be like, well, you know, she was born in August. She’s a Leo. She’s bossy. 

Wait a second. That’s where it starts is that, you know, deeply ingrained, you know, patriarchal women must follow all the time instead of saying, hey, you know, women can lead too and we can have a voice also, but it’s hard to use that voice if even inside your own family you’ve been told to stay quiet and stay smooth.

Dr. Maria Rovito, PhD (35:03)

Definitely, right. And I think that realization was a large part of it for me because rural Pennsylvania is very much similar to the South. It’s Appalachia. So they do have that culture there. And not only that, I went to Catholic school, which is also like extremely patriarchal. So yeah, I mean, I grew up thinking like, okay, any man that, you know, I had to listen to just do what he says, right? 

Like, which brings up the issue of consent and sexual assault and abusive relationships. Even thinking about that I could say no to someone did not occur to me until I was out of undergrad, quite truthfully. So yeah, it leads to everything. And also within the home, When women have endometriosis pain or any type of bodily illness or whatever, they’re not allowed to take a sick day. 

They’re like, you know, well, who, like, who’s going to do the work around here if I don’t do it, right? Cause obviously like a lot of men won’t like, let’s be real here, you know, I mean, all those like parenting household duties still fall onto women. And even, even if they’re in pain and they’re just like supposed to accept that, like that’s not, that’s not right.

Dr. Ginger Garner PT, DPT (36:37)

Right, they keep going, they persist. So you brought something up that I think resonates or should resonate or will resonate with a lot of women. And that is that you said this, I didn’t know that I could say no to someone until out of undergrad. So how did that shift happen in you? Because I think, again, I think that’s a really strong, profound, point to make and something that, you if you’re listening and you’re in your twenties or maybe you are an undergrad, have you ever questioned that? 

You know, this is speaking like directly to the listener. Have you ever questioned that as a woman you can say no? Because I think a lot of women do have this happen to them. They know that every time they say no, particularly to a man, they get hurt, which might seem off track from endo, but really when you go in to get care, and we have been educated, I was educated in a patriarchal medical system, you still then feel like you may not have a voice and you’re not allowed to say no. So how did that shift, how did you come across that shift? Because that’s a big thing.

Dr. Maria Rovito, PhD (37:40)

You know, I mean for me, see that was really just growing up, you know, both my parents were anytime I even resisted a little, I got a ton of pushback from both of them and after a while you just learn to just accept whatever happens, like you don’t put up boundaries, you know, like whatever happens to you it is what it is and like if someone yells at you it’s like okay well maybe they were angry at me and it’s my fault, right?

So honestly, I got to the point where all these, you know, I wasn’t getting any help. wasn’t like, the help I was being offered was just like completely ludicrous. And I came to the point, I was like, at the end of the day, this is my health. And I don’t really care what some white male doctor thinks about my body, because if I don’t like these treatments and like, if I don’t, want to do them, then I don’t have to do them. Any prescriptions, yeah. Right.

Dr. Ginger Garner PT, DPT (38:53)

Yeah, if they’re not finding, you’re not finding relief in them, it’s not leading you to a better place, you know? Yeah.

Dr. Maria Rovito, PhD (39:00)

Yeah, and that’s like why I think like realizing that you have the power to just like, like totally exit like both doctors appointments and maybe even like the Western medical system in general. I feel like it’s so much more freeing because you don’t have to subject yourself to, you know, countless different medications, hormones, birth controls, just to be told again and again, that maybe next time or maybe try this one works or like, well, if you’re pushing back, maybe you have anxiety or depression and why don’t you see a therapist about that? And it’s just, no, mean, yeah, you don’t have to put up with it. Yeah.

Dr. Ginger Garner PT, DPT (39:42)

You don’t. And we always make sure that in, you know, in the show notes, we put links to resources. So any resources that we mentioned, any resources that Maria, you, you, it clicks in your brain tomorrow afternoon or next week. And you’re like, we’ve got to include that. We will make sure. So always read the show notes because we will include links where you can get to the right care and the right help so that you don’t have to go through 15 different treatments in 11 years and loss in your life in order to get to the point where you find that relief that, you know, both of us are sitting here as people on the other side of excision and very well done excision. I can speak for myself and feeling amazing, you know, because so you can get there is another side.

Dr. Maria Rovito, PhD (40:22)

And see, see for the hysterectomy, I feel like it’s, it’s like that to the nth degree though, because I know for me, I’ve had, I had one excision surgery with a worldwide specialist. I mean, I drove four hours to see him and there was about a year there where I felt really good, but then it was like, you know, 14, 15 months later, I started feeling awful again and my pain got came back like even worse than before. And I knew at that point, I was like, yeah, I know it’s not the endo grew back that quick. Cause if someone of that caliber is doing surgery, I’m like, yeah, I don’t think so. you know, I had to go to, I don’t even know how many surgeons to try and get diagnosed with adenomyosis because I know like, okay, having those comorbid conditions is very common. 

You know, if you go through that process of elimination, that you know, your endo is has been expertly removed and you’re still having pain, like there must be something going on. And all these doctors kept telling me no. And it was my pain was getting I swear to God, my pain was getting to the point where I could not move my right leg during my period. And yeah, I had to use a wheelchair.

And it’s just, you should not accept that quality of life. Like, I’m sorry. Like, that’s not acceptable, like for anyone. So, yeah. Yeah.

Dr. Ginger Garner PT, DPT (42:00)

Yeah, yeah. So this is a really good point to bring up that the comorbid situation of, you know, endo and adeno, endometriosis and adenomyosis going together is really important and that the caregiver, the provider that, you you choose whomever that is, and the therapist, which I think is equally essential on your prehab and your follow -up,

Dr. Maria Rovito, PhD (42:14)

Mm

Mm

Mm

Dr. Ginger Garner PT, DPT (42:29)

should be very well aware of looking for those things. Because for those of you dropping into this, and this may be your first podcast on endometriosis, is that hysterectomy is not a cure for endometriosis. However, for adenomyosis, it’s a must. That’s the gold standard, is a hysterectomy for adenomyosis. So that’s important to make that distinction. Because if it is missed, then like happens with…

Dr. Maria Rovito, PhD (42:30)

Mm

Mm -hmm. Yeah.

Yeah, right.

Yeah. yeah.

Yeah. Right, right.

Dr. Ginger Garner PT, DPT (42:58)

view that you end up in that cycle of going back again.

Dr. Maria Rovito, PhD (43:02)

Right, exactly. I mean, it was hard to come to the realization, like, yes, I could have a total and it could still grow back. Like I do, you know, I’ve thought about that quite a bit, but I think, you know, there’s several things. I think I can’t, you can’t let that fear control your life. Like thinking that every day, like, did my undo grow back today? Like, is it worse today? Like you can’t live.

Dr. Ginger Garner PT, DPT (43:22)

Mm

Dr. Maria Rovito, PhD (43:30)

like fearing the future like that. And the other part of it is that was just so this, I swear, like this is when I really felt like I didn’t even understand the point of life was like, so I had, I had diffuse adenomyosis. I had eight fibroids. I had seven polyps and I had like 21 paratubal cysts and no

Dr. Ginger Garner PT, DPT (43:58)

Mm.

Dr. Maria Rovito, PhD (43:59)

No one ever, like throughout my life, like I swear to God, on any ultrasounds, CT scans, MRIs, no one found all those. So I was on the hormone birth control loop of trying this one, then three months later trying another one and being kept told like, well, we don’t know what it is because all your imaging is fine. So therefore it’s hormonal. And after a while, it’s just like, no, I mean, it’s not like,

Dr. Ginger Garner PT, DPT (44:23)

All right.

Dr. Maria Rovito, PhD (44:29)

So, yeah.

Dr. Ginger Garner PT, DPT (44:30)

And that’s the important, that’s another important point to draw out of your message here is that currently there is no gold standard for imaging on diagnosis of adeno or endometriosis. And so you know, they’re listening and you have been told exactly what Maria was told. well, you can’t possibly, you know, have fill in the blank because your imaging is clear.

Dr. Maria Rovito, PhD (44:40)

Yeah.

Yeah.

Yeah.

Mm

Dr. Ginger Garner PT, DPT (44:57)

the gold standard is a scope. You actually have to go and look inside in order to diagnose to biopsy that tissue. And so we don’t know for the foreseeable future. It could change next year, but it might be five years. We don’t know when imaging is going to become reliable. The only reason imaging is being used in any kind of reliable way is preoperatively to guide what’s about to happen with a surgical excision. So yeah, if you’re out there, don’t accept

Dr. Maria Rovito, PhD (45:03)

Yeah. Yeah. Right.

Mm -hmm. Yeah.

Mm -hmm. Yeah. Right.

Dr. Ginger Garner PT, DPT (45:26)

clear quote, clear imaging. Yeah.

Dr. Maria Rovito, PhD (45:29)

yeah, totally. Yeah. And I mean, that was the hurdle for me right before my first surgery was getting ultrasounds and scans and having nurse practitioners tell me over and over like, you’re normal, it’s fine. And after a point you’re like, no, this is not normal. And either you’re gonna send me to someone or like, you know, I need you to note that you’re refusing me in my chart because like,

Dr. Ginger Garner PT, DPT (45:40)

Yeah.

Yeah, yeah. Well, I’ve got four, I have got four hot questions for you before we hang up. Okay, one, in a nutshell, what needs to change in contemporary medical education to better address gender bias and patient well -being?

Dr. Maria Rovito, PhD (45:59)

Yeah.

Okay, alright. Yeah, yeah, yeah. Okay.

I see I just think students and medical professionals right now just need to recognize that women’s health is not just OB and it’s not just childbirth and it’s not just pregnancy that it is so much more than that and that another one of my conspiracy theory hot takes is I’m not really sure that OB and GYN should be together.

Dr. Ginger Garner PT, DPT (46:48)

you

Dr. Maria Rovito, PhD (46:48)

quite truthfully, I feel like they should be separate. And I also feel like we can’t dump all of women’s health into GYN. You know, I feel like if you’re going into any other specialty, be it ortho or, you know, like your nose throat, yeah.

Dr. Ginger Garner PT, DPT (46:57)

Mm

think about endocrinology alone in that they don’t get any menopause training. And unfortunately, so if you’re listening, okay, just because someone is a GYN doesn’t mean they know anything at all about managing your perimenopause or even recognizing the symptoms. And so I think you bring up a good point that maybe the two should be separated. That’s a great point.

Dr. Maria Rovito, PhD (47:10)

yeah.

Yeah, yeah.

Right. Right.

Yeah.

Dr. Ginger Garner PT, DPT (47:30)

I think that there should be subspecialties. Look at what we have in physical therapy in pelvic health. That’s a subspecialty, but then I have subspecialties as a pelvic health PT underneath that of diving down deeper and looking at endometriosis, perimenopause transition, postpartum, postmenopause, things that impact the hip joint specifically, because hip pain can also be endometriosis problems too. So there are so many subspecialties to drill down. So.

Dr. Maria Rovito, PhD (47:31)

Mm

yeah, yeah.

Mm -hmm. You’re right.

Mm

Mm

Mm

yeah, yeah.

Dr. Ginger Garner PT, DPT (48:00)

That’s an encouraging point to make about a change for the future, but also to recognize now if you’re feeling frustrated, stumped, and at a dead end and you’ve gotten no information from your GYN.

Dr. Maria Rovito, PhD (48:02)

Mm

Mm

Dr. Ginger Garner PT, DPT (48:13)

there are solutions because they don’t get training. one of the things that, one of the resources, if you’re in the perimenopause to menopause and postmenopause range is that obviously endo just doesn’t magically go away with menopause. You need skilled excision for that. But also you’re going to need some kind of hormonal assist at the same time. And you need someone who’s really well versed in that.

Dr. Maria Rovito, PhD (48:15)

Yeah, yeah.

Mm

All right.

Mm -hmm.

Dr. Ginger Garner PT, DPT (48:42)

So we’ll also put a link to menopause .org because the North American Menopause Society is a place, it’s a point to begin for menopause literate providers, which is the subspecialty of GYN and pelvic PT, et cetera. yeah, yeah. So I think that’s a really good point on medical education. Lots needs to change and that could be one of them.

Dr. Maria Rovito, PhD (48:43)

Right.

Mm

Mm

Mm -hmm.

Yeah, yeah, totally. Yeah.

Mm -hmm. Yeah.

Dr. Ginger Garner PT, DPT (49:09)

So tell me what you’re doing now in terms of like current research or publications you’re working on. If you can give us a sneak peek.

Dr. Maria Rovito, PhD (49:16)

Yeah, I have a lot coming out right now, but I don’t know quite honestly. mean, just in the next, I would say years, just nonstop. mean, yeah, I mean, my work on eugenics and endometriosis will be in a book. I won’t say when, I won’t say the title, so don’t quote me. Thank you, yeah. And I mean, I think there are other aspects of…

Dr. Ginger Garner PT, DPT (49:18)

Yeah.

Congratulations. Yeah.

Dr. Maria Rovito, PhD (49:44)

endometriosis outside of its history that I do want to look at. I’m really interested in the link between the mental aspects of going through medical gas lighting and trying to get an endometriosis diagnosis when you’re a sexual assault survivor. Because for me, I feel like the two experiences were feeding off each other and making both of them worse because

Dr. Ginger Garner PT, DPT (50:03)

Hmm.

Dr. Maria Rovito, PhD (50:14)

first off, like having that lack of autonomy over your body and both times being done by men makes you feel like it makes me feel quite truthfully that I can’t trust men anymore because of these things that happened to me. So I’m interested in that connection. And I know there’s like some people think that like childhood sexual assault causes endometriosis. don’t find that that’s credible at all.

Dr. Ginger Garner PT, DPT (50:29)

Mm -hmm.

Dr. Maria Rovito, PhD (50:44)

But yeah, yeah.

Dr. Ginger Garner PT, DPT (50:44)

Right. Yeah, exactly. Knowing what we know about the current working theory that all evidence points towards. It being there from the moment you’re conceived that it’s genetic in nature and that it’s always there is the most reliable theory that we have to go on now. So what advice would you give to young scholars?

Dr. Maria Rovito, PhD (50:53)

Yeah. Right.

Yeah.

Dr. Ginger Garner PT, DPT (51:11)

that are getting started and thinking undergrad and pursuing research and looking at the intersection between gender and disability and medical studies.

Dr. Maria Rovito, PhD (51:15)

Mm

Well, that’s, it’s so interesting for me because I really think that all my problems started when I was a freshman and undergrad. And now, now that when I finished my PhD, like literally the day I finished it, when I defended, it all clicked in my brain. I was like, my God, like this must have been, like there must’ve been a reason behind all this. And so I would just say, you know,

Honestly, it’s a marathon. Don’t rush yourself to finish right away. Take time to rest and recover as you need them. Also, just like, if you’re a female or a woman of color in academia, don’t let your male professors shove you around or tell you no, because I mean, I know where the department and I was. had to, first off, I had to explain to

like our department there, what ENDO even was, and like explaining it to men of a certain age is a little not easy. So yeah, I mean, like just showing people like the basic statistics of like, like if I tell, if I, anyone I tell that it takes seven to 11 years to be diagnosed and it affects about one out of nine AFAB people, automatically they’re like, my God, that’s messed up. So it’s like,

Dr. Ginger Garner PT, DPT (52:29)

Yeah.

Dr. Maria Rovito, PhD (52:48)

You just like honestly if you just tell people the basic information about this disease and why it’s so under diagnosed and why like why the treatments are good and why you know nothing is improved in 40 years it’s because of that. So I think people I think people will understand you know after once they hear that you know after reading more about it but I think there is really a problem now of just

people just not even recognizing the word or like what the symptoms are. I think that’s also a huge issue. Yeah.

Dr. Ginger Garner PT, DPT (53:23)

True, true. And that brings up a really important point in that healthcare providers and I’m in healthcare, I’m pushing 30 years now in healthcare. And as a person with endometriosis, even my well -meaning colleagues who I know, who provide care to me, or I provide care to them, are completely still under -informed or misinformed. GYNs,

Dr. Maria Rovito, PhD (53:30)

Mm.

Mm

Yeah.

Yeah.

Yeah.

Dr. Ginger Garner PT, DPT (53:52)

telling me that gastrointestinal systems have, you know, pain has nothing to do with, you know, gynecology work. People saying, you know, painful breathing and lower quarter pain in the gut really has nothing to do with endometriosis at all. And these are highly educated, highly qualified people that, you know, I have trusted in many different capacities and still continue to trust. I don’t completely dismiss them.

Dr. Maria Rovito, PhD (53:59)

yeah. Yeah.

Mm

Yeah.

Dr. Ginger Garner PT, DPT (54:21)

You know, in does not their thing. Now if you’re gyn that’s a different that’s a different That’s a different thing and they shouldn’t be out there, you know screening women if they don’t even know You know the signs of endometriosis, but it speaks to the weakness in our medical education currently It also speaks to their being we talk about a lot in public health low health literacy Like people not understanding how their bodies work, but we don’t often Apply it to ourselves low health health

Dr. Maria Rovito, PhD (54:24)

Yeah. Yeah.

yeah. -hmm. Right.

Yeah.

Mm -hmm. yeah.

Yeah.

Dr. Ginger Garner PT, DPT (54:51)

in the healthcare system that we exist in, which has the most expensive, you know, quote, world -class healthcare, you know, in the world. And yet we have pervasive low health literacy where medical gaslighting is very real. And sometimes it is unintentional where they don’t know that they don’t know. And then they’re providing really outdated advice, which ends up being harmful, you know, and in some places quite negligent, but

Dr. Maria Rovito, PhD (54:57)

Mm

Yeah. Yeah.

Mm

Mm

Yeah.

Yeah.

Dr. Ginger Garner PT, DPT (55:20)

With that in mind, just again, for the listener, it’s to check out the show notes, look for the resources that we have there, know that there is help. There are amazing excision surgeons, there are amazing endo specialist therapists of all types and patient advocates and we’ll continue to be interviewing them on this season of the Lidl Mill podcast. Last question.

Dr. Maria Rovito, PhD (55:20)

Yeah.

Mm

Dr. Ginger Garner PT, DPT (55:49)

Where can people find you and your amazing work?

Dr. Maria Rovito, PhD (55:49)

Okay.

Yeah, so I, right now I’m on Instagram. Basically my username is just Maria underscore Rovito. People can email me. I’m pretty much all over Endo Summit’s Instagram page. But yeah, mean, there’s Instagram email. I do have a public Facebook that

Dr. Ginger Garner PT, DPT (55:59)

Okay.

Dr. Maria Rovito, PhD (56:22)

I think is on Nancy’s Nook page, so there’s that. yeah. Yeah. thank you. Yeah. yeah.

Dr. Ginger Garner PT, DPT (56:27)

Awesome, thank you. Thank you so much. Dr. Maria Vervito, I love the work that you’re doing and your experience is invaluable to so many women and people. And so I encourage everyone to look up her publications and read those popular mags too, because that combination is just increasing awareness all over the place. And so thank you again for joining me.

Dr. Maria Rovito, PhD (56:51)

Yeah. yeah, no, I love being here. That was amazing. Thank you.

Dr. Ginger Garner PT, DPT (57:02)