Hello and welcome back everyone. I am super excited. I know I say that every week, but I am, I am, I am. I have not one, but two amazing guests today who are experts in the realm and universe that is endometriosis. And so I wanna welcome both of you, Dr. Danielle Luciano and Dr. Elise Courtois, welcome. I’m so glad y’all are here. Now, as I usually do, before I dive in,

Dr. Danielle Luciano, MD (00:24)

Thank you

Dr. Elise T. Courtois, PhD (00:25)

Thank you.

Dr. Ginger Garner PT, DPT (00:30)

I want to give you guys a little bit of background about what they do. Let’s start with Dr. Luciano. She’s an associate professor of obstetrics and gynecology and a fellowship trained minimally invasive gynecologic surgeon at UConn Health. Director of the Center of Excellence in minimally invasive gynecologic surgery and the fellowship in minimally invasive surgery at UConn. She specializes in diagnosis, treatment, and surgery for conditions like endometriosis. She’s a pretty strong advocate and teaches students, residents, other healthcare providers, and anyone that will listen, I imagine, about endo. And she’s actively involved in research. And that’s one of the reasons why I’m so excited to talk to her today and collaborate with her colleagues at the Jackson Laboratory. 

So Dr. Elise Courtois, she is a PhD scientist, researcher, and molecular biologist. That is a mouthful and has dedicated her career to understanding complex diseases as director of the single cell biology lab at the Jackson Laboratory. Courtois leads pioneering research using advanced technologies to study diseases at the single cell level. A major focus of her research program is women’s health, specifically Endo. She is the co-founder and co-director of Endo Rise – which stands for endometriosis research, innovation, support, and education, which in partnership with the state of Connecticut and UConn Health aims to advance education, research, and advocacy to improve care and raise awareness for all people who have endometriosis. She also belongs to the Connecticut Endometriosis Working Group and is a strong advocate for policy change to improve the lives of those affected by this condition. Thank you guys.

I say guys for like the whole universe, so sorry. It’s like genderless, but welcome and thank you for being here.

Dr. Elise T. Courtois, PhD (02:29)

Thank you. Yes.

Dr. Danielle Luciano, MD (02:34)

Thank you for having us.

Dr. Ginger Garner PT, DPT (02:36)

So, my gosh, I don’t even know where to start because there are so many questions that I have, but I’d like to start Danielle with you, if that’s okay. What advancements have you seen in the treatment of endometriosis? I know things are, it feels like rapidly changing, but at the same time, not changing fast enough in endo. Like how do they impact what you do every day?

Dr. Danielle Luciano, MD (03:04)

So I think what’s changed the most and the most rapidly is probably the actual awareness for endometriosis and recognition of endometriosis. Unfortunately, treatments have not improved at all. There have been some improvements in surgical treatment of endometriosis in terms of recognizing the disease better, so doing better surgery for it. But what’s really lacking is an early diagnostic tool, a non-invasive early diagnostic tool, and then obviously a cure. even more than that, or in addition to the cure, alongside a cure, a targeted therapy, something that is

targeted at endometriosis, has minimal side effects everywhere else, and isn’t just throwing something out hormonal or non-hormonal that isn’t targeting endometriosis and causes all sorts of other side effects. But the research is increasing because the awareness is increasing and people are standing up for this disease and talking about this disease and hopefully that means that people will research it more and when we research it more, hopefully we’ll find those answers.

Dr. Ginger Garner PT, DPT (04:34)

Yeah, you just kind of said it all in a nutshell. So early intervention and non-invasive diagnosis. That would be so nice. That would have saved me about 30 years or so. I’ve not really counted the number of years that I waited, but you could say since I just was diagnosed last year at 50, that I waited my whole life for that. And I’m in the industry, right? So it makes me, I get very passionate and very concerned and compassionate towards women who come in and I think that they are presenting with symptoms that have been misdiagnosed or overlooked in some way. Elise, speaking to your research and what you do, as director of that of the lab, how has single cell technology and the things that you do, how has that changed the way we understand diseases like endometriosis?

Dr. Elise T. Courtois, PhD (05:38)

So this is, in my opinion, a critical advancement in science. We’ve been seeing how we have changed our way to look at a complex system, such as a tumor or whatever disease, really looking at the most individual component that forms this complex ecosystem that are the cells. So when you look at something from far away and you mix all the signals together, it’s very difficult to tease out which cells are actually important and which cells can be targeted or can be driving the initiation, propagation, drug resistance of a specific system. So the development of those technologies, whether its profiling system using single cells or spatial transcriptomics has really opened a new field of looking closely about those individual components of the lesions. And in the context of endometriosis, because we still don’t know exactly how it happens, what are the drivers that initiate this disease, why some patients actually develop different type of lesions, and also what are the key differences between those lesions, but also the similarities.

I think it’s very important that we start applying those newer technologies that can offer us the possibility of evaluating exactly what the cell composition, what the biology is of this very complex ecosystem. We’re talking about lesions that recapitulate the endometrium ecosystem, but also very different. They have a different immune component. They can react differently or similarly to hormonal variations.

And we need to understand it from the initial stage of the disease when it happens and when it actually evolves over the years of all those years that we don’t treat the disease and we let it progress. So basically that is a new way to look at a system that is complex and we can really leverage those new technologies. This is a field that has developed the last couple of decades. So it’s really pretty new and it really is something that has helped us understand other diseases such as cancer but also other immunological disorders in a better way. So applying it to endometriosis I believe is going to be extremely valuable for us to understand better the biology of this condition so that we know how to maybe detect it non-invasively or treat it in a more targeted way, more specific way that really will advance our treatment strategy of the disease.

Dr. Ginger Garner PT, DPT (08:31)

I am pretty excited about that from the physical therapy aspect of it. And of course, you know, as someone with endo, that just adds a whole other layer to it. But one of the things that I see a lot is depending on where the lesions are and sometimes even not, but if we are particularly talking about bowel endometriosis in the range of symptoms that can give someone from a gastrointestinal perspective.

I see, like, I feel like I see everything in terms of signs and symptoms that present with GI issues from things like, you know, for the listener, it might feel like things like bloating or indigestion or constipation, right? And from…I ran down the healthcare perspective, we’re talking about persistent small intestinal bacterial overgrowth or other things like that, or Candida, things they just can’t seem to get rid of. And one of my big questions has been throughout…seeing women like this through the decades of practice and experiencing a wide range of things myself is what happens? What are the lesions doing in the bowel? How would that present to someone like in pelvic physical therapy from a visceral standpoint? So for the listener, from an internal organ standpoint – how are lesions then impacting the musculoskeletal system, back pain, SI joint pain? And then how is that going to present from a gastro intestinal, know, or gut perspective, and then what can we do about it conservatively in therapy? So what you’re doing, Elise, is amazing because I’m very curious about the difference between like what those lesions are doing in different systems of the body, you know, the bladder versus the bowel and that kind of thing.

And of course, if either of you have thoughts on that, I would love to have you elaborate on that conversation because that’s something that it seems to have some type of pattern, but also very unique in people’s presentations in terms of how their pain can present.

Dr. Danielle Luciano, MD (10:44)

That’s one of the biggest issues. And that’s one of the things, when Elise and I started working together, and one of the things that I think is so great about our relationship other than our friendship is that I can tell her what’s frustrating me as a clinician. And she will, so she understands how to look at these lesions. And like she’s saying, I’m looking at how they’re different, right?

One of the things that I say to her all the time is, I don’t understand how I can have a patient with stage one disease and no pain, a patient with stage one disease and tons of pain, a patient with a big lesion on her bowel in stage four disease and no pain, and a patient with, you know, what you would expect to have terrible pain, have terrible pain, right? They just, on a macroscopic view, when I’m doing surgery, these lesions look exactly the same.

Dr. Danielle Luciano, MD (11:43)

By MRI, they look the same. In the operating room, they look the same. Maybe they’re a little bit more fibrotic or more difficult to get out sometimes, but most of the time they look exactly the same. And yet in some patients, they cause pain and in some patients, they don’t cause pain. And so I keep saying to Elise, can you just tell me why this one is different than the other one? you know, that’s what I, because how do we get patients that are stage four disease and have no pain?

Dr. Ginger Garner PT, DPT (12:05)

Yeah.

Dr. Danielle Luciano, MD (12:12)

And they show up in my office. So like, you know, I wouldn’t even have thought to give them a non-invasive diagnostic test because they didn’t have those symptoms. So there’s gotta be something, something different, right, about these lesions and they’re not all the same.

Dr. Ginger Garner PT, DPT (12:25)

Mm-hmm. Yeah. That’s what’s so, I think, enigmatic and absolutely maddening and frustrating about the disease. 

Dr. Elise T. Courtois, PhD (12:37)

And we actually started with Danielle really focusing on endometriosis. Let’s look at the endometrium. Let’s look at the lesion because we want to understand how endometriosis impacts the endometrium itself. It could explain infertility. It could explain some of the heavy menstrual bleeding. But we also wanted to know the heterogeneity, the differences between those different lesion types and how we could…

look at commonalities and key differential features that could help us understand why a lesion is on the bladder, why a lesion is infiltrating the colon, or why one is staying just as a superficial lesion. And we went from this more local approach to a more systemic strategy. Now we’re really looking into the comprehensive view of how endometriosis impacts the whole body. It’s not just about looking at the tissue. We are trying to get clinical data. We try to understand this very core morbidity associated with this disease. We try to look at the peritoneal fluid, at the blood, because in the end, it comes from those discussions. I want to understand more of what the biology is. Daniel wants to understand how we can treat it and together we want to understand how those two are tied together. And I think it’s collaboration that really allows us to do that. From a complex clinical system, we want to understand in a simple way the biology and how it translates into a lesion, maybe an association to an immunological disorder, maybe…

with other type of comorbidities, but it’s by looking at the whole system in a holistic and comprehensive manner, but using also powerful technologies that I believe will be improving our understanding of this condition.

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

That’s so hopeful. That is so hopeful and promising and real. And it’s an exciting time to, I guess, to say, you know, to be here, to be alive, to be in this moment, because I feel like we’re on the cusp of just advancing things so much when we compare where we came from. But we have so many misconceptions that swirl around the disease. And I’m wondering, I’m wondering Danielle, what are some of the misconceptions about Endo that you have to work to dispel on a regular basis?

Dr. Danielle Luciano, MD (15:18)

I think the biggest one that probably makes me the most crazy is the number of patients that come in and tell me that their doctor told them they can’t have endometriosis because they’re too young. And you know, you don’t have endometriosis, you’re too young to have endometriosis. We know that that’s not true. We know we’ve seen endometriosis in adolescents. Yes, sure, the average age of diagnosis of endometriosis is 27, right? But we know that it took them 10 years to get diagnosed. So really the average age of diagnosis is 17. So that’s what frustrates me probably the most. And that’s where as a clinician, I really want to find an early non-invasive diagnostic test for this so that I can detect this and diagnose this in these young women without having to take them to the operating room, without having to do terrible surgeries on them because they’ve been ignored for so long.

I really, on an awareness and on an education, because that’s part of this program, this Endo Rise program is not just the research, it’s also the awareness and the education. That’s why we’re reaching out to school nurses. And one of the things that we’re doing in the next month is in November, actually, we’re meeting with some school nurses in Connecticut to try to teach them about this disease so that it just, just so that like, the fifth time the girl comes to the nurse’s office, she might say, wait, there was that thing that Dr. Luciano talked about that day. Maybe she has that, you know? And we’re not waiting until they’re 27 years old to diagnose them. The average age, it makes me crazy when people say that because we know that’s not the average age. We know that by then they’ve been suffering, right? That would be to say that, you know, and part of that average is because look at you, you were 50, right? And so when you put a 50 year old into the average, it’s gonna bring it up. So that’s not the average age. We know it starts earlier. And that’s, think that to me is the biggest thing I would love to dispel to all of my colleagues, pediatricians, family practitioners, everybody. They need to know this happens earlier.

Dr. Ginger Garner PT, DPT (17:31)

Yeah. Yeah, when I think back, now I’m, and I can talk about from a patient perspective, from a personal perspective, when I look back, it was 16. 16. But 16 to 50 is how long, you know, that took. And so, yeah, it is a whole lot longer. I’ve also heard lots and lots and lots too much that patients will come from their provider, whomever that was, and we’re told that their GI symptoms have nothing to do with gynecology, that the two are actually mutually exclusive. Or another common one that we all know, but maybe the listener doesn’t, is that pregnancy is going to help, or you’re going through menopause, it’s going to get better. Yeah and you’re too old to actually have endo, that could be me. That could have been me, right? Yeah, but those are other common ones.

Dr. Danielle Luciano, MD (18:32)

Along that same line, well you had no trouble getting pregnant so therefore you can’t have endo. We know that endo doesn’t necessarily cause infertility in everybody, right? So that’s not true either.

Dr. Ginger Garner PT, DPT (18:37)

Yeah. Yeah. Oh goodness, when we talk about, you know, women’s and gender studies, we then begin to have a social commentary and a cultural context that heavily values women based on their fertility alone. And I know that some clinical practice guidelines that exist out there are based on only intervening with endo if a woman is interested in her fertility – which is, we want to talk about maddening. There’s no words for that. Yeah.

So let’s talk about the hope. Let’s talk about the good stuff. We know all the myths out there and the hopeful message is that there is help and there’s so much awareness out there right now, which is so inspiring, brings me to tears on a regular basis. So let’s talk about Endo Rise. It is ambitious and amazing. It’s co-founded.

Dr. Ginger Garner PT, DPT (19:52)

by you to address endo through the things that we mentioned in your awesome bios, research, innovation, education. Can you share some of the key accomplishments and things you’ve been doing so far?

Dr. Elise T. Courtois, PhD (20:08)

I can start if you want. So I think one of the key accomplishments that has happened, it’s the creation of EndoRise because of what we achieved before actually. So literally changes in policy has been critical and key for the creation of this program. And that’s through the work of the Endometriosis Working Group in Connecticut and also the support that we have received from the Connecticut legislation. This initiative has this specific point that we’re trying to be a multidisciplinary program. We’re trying to involve many different actors and to bring as much as we can into the conversation so we can have a positive impact global. It’s about promoting research, but it’s also about involving people that need just need a push to be involved, such as lawmakers, and really can make the difference. I believe that we passed two pieces of legislation that have been really essential to emphasize on the need to address this disease. And that really is what has boosted the creation of this program. We passed the first law to push the creation of something to address endometriosis at the state level.

And the second one was really about, here’s the plan that we propose, this is a generalize, please fund us. We can work with many different actors to make it happen. And so for me, this is my accomplishment before it even was there, the fact that we were able to involve more people and put endometriosis at least in the routine conversation, something that we no longer don’t talk about.

Dr. Ginger Garner PT, DPT (21:49)

Yeah.

Dr. Elise T. Courtois, PhD (22:03)

And then in terms of accomplishment, I believe, we’re trying to do this, as I was mentioning, multidisciplinary program where it’s not just about one thing, it’s about different pieces of a puzzle that will help overall improve the awareness and education. So there is a component where we organize events. We project, for example, the Endo what? Below the belt documentary – two different audiences and also partnering with different patient advocacy groups to bring the conversation, to participate, to basically make this event available to as many people as we can. We have a program that is around designing a structure that will allow research to be done. So this is for the collection of biospecimen and data from patients that are ongoing for surgery for endometriosis resection. And this is very important because those biopsies would be discarded if we don’t collect them for this program. So endometriosis is a human-specific condition. If we need to start looking into what is happening in the human, then maybe we’ll have some really nice model that we can use for the study of this disease.

There are a few of them actually, but we need to improve both. So this biorepository is something that really is an achievement. I believe we have been able to do that in partnership between UConn Health and JAX, but trying also to diversify where are we getting that biospecimen so we can encompass as much diversity as we can. We know that endometriosis. impacts everyone. 1in 10 individuals born with a uterus is basically what the estimation gives us, what are those real numbers? We have to do a little bit more research. And we want to be able to include as many people from different geographical location, different ethnicity into the study. So that’s why we are building this bio repository that will be able to actually distribute samples to different researchers and pharma biotech companies that are willing to dive into this disease. Daniel, do you want to talk about the education and all the healthcare providers? Because this is your alley.

Dr. Danielle Luciano, MD (24:44)

Yeah, and then in addition to the research and advocacy and awareness is obviously the education portion of it. so we are, out of this program has come, we’re having a CME course for some of our physicians in this state to teach them about radiologic diagnosis of endometriosis so that, and give them some lectures on the disease so that they understand better how to diagnose it, recognize it, I guess is a better word, recognize it earlier, and improve the chances of the patients seeing, being triaged to appropriate centers of excellence so that they can get their endometriosis treated. And then the school nurses, educating the school nurses is really important. We’ve been asked to speak at grand rounds, multidisciplinary grand rounds to family medicine and pediatricians. I did that in January and talked to them. You know, I focused my talk on endometriosis in adolescence because, and you know, I had people afterwards say to me, oh well, I didn’t know, you know, that this is what was going on. And, you know, I think, you know, unfortunately there’s a lot of things or maybe fortunately there’s a lot of things to learn in medical school, right? And it’s hard to learn everything. And when you are years out and you are focused on your practice, it’s hard to know all the things. And so that’s why, you know, it’s important to put this in the front of someone’s mind because if they, you know, the first or second or third time that they diagnose someone with endo, after that, they’re going to start looking for it.

And they’re gonna see it when it comes, right? And because you don’t see what you don’t know. And we can’t teach everything in the medical school. So sometimes we have to teach it or in the nursing school or in the physical therapy school. So we have to teach them when they get, you know, sometimes on the way out. And it just, I think the other thing is the relationships that we have built with, you know, all these people that have kind of, you know, come out of the woodwork, so to speak, and really want to be involved in and didn’t know how to get involved in treating endometriosis patients or advocating for endometriosis patients. And when we had our advocacy event kind of in June, and after that, we had multiple physical therapists that came to us and said, you know, we want to teach your OB-GYN residents about what we see in our physical therapy office and these women with this pelvic pain. And I even had a physical therapist that asked to come to the operating room with me. She wanted to see what endometriosis looks like in real life, just so she could understand what was going on with her patients. And I just love that. I love that conversation. I love that multidisciplinary approach. We don’t have a cure for endo, so we need all of us on board, right? We need the researchers, we need the physical therapists, we need the teachers, we need everybody so that we can figure this out. And I just, think that’s for me the biggest, most wonderful accomplishment is all the new relationships and new people that I have met that are all on the same page that just didn’t know how to do it all together, you know?

Dr. Ginger Garner PT, DPT (28:11)

Yeah, yeah, that is so incredibly important. That leads me to another question too, because while, you know, I see a lot, I see a different part of a person’s journey on that endometriosis spectrum. I might see them for, you know, what we would call like pre-habs. They come in and we’re prepping for all the things they’re going to need to do to prep for surgery, to be in good condition, lifestyle choices, minimizing inflammation, you know? What’s happening with hormone levels, all those things. And then afterwards, of course, there’s a lot. There’s a lot to go over after in terms of scar management and pain management and the long-term thing. Short and, I call them short and long game things to accomplish. But I think what a lot of women who think they may have endo or have endo have questions about is what does minimally invasive…you know, techniques from your perspective as a surgeon, what does that look like for patients with endo? Can you walk us through that experience?

Dr. Danielle Luciano, MD (29:17)

So minimally invasive surgery is called that because there are teeny little holes that we do the surgery through. But sometimes I don’t feel like my surgery is all that minimally invasive because sometimes what I do to get rid of their endo, even if at the end when they go home they have four or five little incisions all about yay big, it’s a lot of surgery on the inside.

Dr. Danielle Luciano, MD (29:44)

The best part about doing it minimally invasively is that they do often get to go home the same day or a day later. Their recovery is faster. Their pain is better. I hope that I’m doing less to their pelvic floor, although I’m pretty sure that when I’m putting them upside down in the operating room and filling their bellies full of air that I’m probably causing a little bit of grief and aggravation for their physical therapists afterwards.

But, you know, that’s, so what we’re looking at is a surgery where we go in and we excise those lesions. And now because of this bio repository, we send those lesions to, you know, we send some to pathology and we send the other half that would have gotten thrown away to the bio repository so that we can research it. And most of my patients, like I said, go home the same day and it’s a good two weeks of sore and tired and trying to get yourself back on track. And then usually by then I can get them to back to their physical therapists unless their surgery is more extensive and then it’s more like four or eight weeks. But I, you know, every time I read my, you know, bio and I say, says minimally invasive GYN surgery, like today, for example, I was in the operating room and I, I don’t know, I didn’t feel minimally invasive to me. I mean, she went home with teeny little incisions, but that was a huge case and it was a lot of disease. And, you know, and I, and I know she’s going to feel better, but it’s going to be a decent recovery. And so that’s the part I think that I really want to kind of portray is that, you know, I think people think that, well, you’re just going in and you’re having a little laparoscopic surgery and you’re going to be fine afterwards. And you are, but it’s still big surgery on the inside, even though the incisions are small. And so the recovery is still a little bit of a process.

Dr. Ginger Garner PT, DPT (31:41)

Yeah, yeah, small incisions, big surgery, especially in terms of, you know, what we see in the long run from my side of things with how the viscera responds. What does that do to the, you know, the SI joint if they had back pain before or pelvic pain or hip pain, hip pain they thought was maybe something else like a labral tear or something like that. Thanks for elucidating that more because I think there’s, especially from patient perspectives, I think there’s a lot of confusion about what does happen? What does it look like? And then also employers, like going back to work – you just had a small scope, you can be back in next week. No problem. Hold on.

There’s a lot of other things happening at the same time. And a lot of other things that actually, know, surgeries that could happen too. You could be excising lesions, but you could also, they could also have a hysterectomy at the same time, which is its own kind of, you know, set of guidelines for recovery. So it’s a lot, it’s a lot, but the end analysis is feeling better and thriving and getting back to living again, instead of how women will come in to my office and say, well, I’ve got a plan where if I’m to go somewhere, I need to know where the next bathroom is, right? Or I need to know how long I need to be in the car because I really can’t sit over 30 minutes before the pain starts, et cetera. And then your whole world just goes and shrinks down to nothing. But with amazing excision, it expands again. So it’s amazing. Elise

Dr. Elise T. Courtois, PhD (33:23)

I can tell you also that biologically it doesn’t look minimal. Those tissues are really complex lesions that don’t look benign. They don’t look like nothing to be honest.

Dr. Ginger Garner PT, DPT (33:25)

You know, as a therapist, I have not been able to actually look at that under a microscope. Now I am hardcore curious and want to go and see that. It’s one thing to observe surgery, like you’re mentioning PT’s observing surgery, which I think is very valuable. I did that a lot early in my career.

But gosh, getting into a lab, that’s also super exciting to see what that looks like and appreciate that a little bit more. Increasing awareness is so important that it’s not just a tiny surgery, that it’s not just a quick fix, but there is so much that can be done to improve it that it is worth the time and the effort and the commitment to get treated and be definitively diagnosed. 

So one of my questions, because I am a kind of a policy nerd, like super policy nerd, and when anyone mentions policy, my ears go like my Labrador, my retriever, they go up. I’m like, ooh, policy, tell me more. And so I’m wondering about your work with the Connecticut Endo working group and advocacy policy change. How does that align with like your scientific research efforts and what you’re doing?

Dr. Elise T. Courtois, PhD (35:01)

Well, we’ve been involved in research before this endometriosis working group basically was there. So Danielle and I have been like teaming up and literally looking under the microscope and at the single cell level of those lesions. But I think since this EndoRise program has established, we have more opportunities now to do that. We basically see that there’s a huge value to get the support to do this, to create this biorepository. And for us, it’s the groundwork to basically expand what we can look at and try to understand endometriosis, as I was mentioning, more comprehensively, more holistically, to understand how each component interact with each other and why this phenotype or this phenotype happens and try to understand how we can correlate that with biology. So I would say just opening more opportunities is what we’ve seen with the EndoRise compared to what we used to do, right, Danielle? We used to have a few patients a month. Now we have way more. Danielle has involved all the team at UConn.We are in the process of involving more teams around the state. And this is just like an increasing amount of opportunities for us to dive into.

Dr. Ginger Garner PT, DPT (36:35)

That is wonderful. So for anyone listening with questions concerning policy, we’ll have contact information that you can reach out in terms of Indiriz. I’m super curious as a being involved at the state and federal level in policy creation. So I’ll save my questions for after I have one or two questions that I want to ask. you mentioned the state changing or passing laws at the state level, so policy creation there. Can you explain a little bit more about that? And if there’s

repercussion or indication that or a template? Does that provide basically a launch pad of a template for other states to do the same? So tell me a little bit more about that state policy change.

Dr. Danielle Luciano, MD (37:30)

So what happened was the Endometriosis Working Group got together and we talked about things that we wanted to accomplish about endometriosis and we came up with this program and we presented it to the legislature and in 2022 they signed a bill saying that they wanted us to put this program together and tell them basically what we were gonna be able to accomplish and make a budget and all these things that were well outside of Elise’s and my wheelhouse, a bunch of policy stuff. And so we worked with our legislator, Dr. Jillian, Representative Jillian Bielcrest. She is the head of the ENDO Working Group in Connecticut. We worked with her and with our government people at both UConn Health and Jackson. We put together a House bill, which was presented to the legislature in January of 2023 and to the Public Health Committee. And then it went up for vote and was accepted, approved, I guess, I don’t know, unanimously, which was pretty impressive – from both the House and the Senate unanimously at the state level. And that’s how we ended up with the EndoRise program and the two-year funding for that program and we’re hopefully gonna get a continuation of this funding in 2025. But as soon as this happened and I started presenting this, I’ve had people from other states come up to me and say, so how did you do this there? Both from Massachusetts, we’ve had people in Maine, people in California, all interested in how we’ve done this and how they can do the same thing. And we’re showing them our template, we show them what we put together. And we’re hoping that this spreads throughout the country because I think, I would love to see more funding at a national level. And that’s, think, where we also need to be. you know, for us being even at the state level to have this kind of support has just so much improved what we’ve been able to do and accomplish and research that, you know, it would be amazing if we could do this all over the country and all of the states and then eventually federally.

Dr. Ginger Garner PT, DPT (40:12)

Yeah, that’s an incredible accomplishment.

Dr. Elise T. Courtois, PhD (40:15)

If I can just add something. So I think it’s always easier to do this type of program at the state level. It’s a little bit more dynamic than trying to change things at the federal level. But that was also kind of, we had the stars aligned. So we had a state representative, Gilchrist. She’s like the force behind the endometriosis working group. But it was also like, bringing everyone at the table. So our model is really something that has a huge participation from patient and patient advocate groups, physicians, healthcare providers, researchers, lawmakers. So it’s really the succession of all those meetings that we’ve been doing since after the pandemic, month and month and month, and trying to brainstorm whatever, what do we need to address and how can we address it – that has been kind of the driving force for this program. It certainly would be amazing if we can reproduce that across the states, but having key people that can really bring in the balance in this combo, their force and their enthusiasm is critical. I think we had a huge luck by getting people that were so involved with endometriosis and so passionate that it has been feasible. But I would say that I was the first to be surprised to see that we got like, unanimous support from both bills, both years actually. And it just took us a little bit of effort to talk to a civil representative and the senators in Connecticut to see that in the end, people are

interested and if they get the good arguments they would be able to support it. So it was very nice I would say to see that we managed to get a great support at the legislation.

Dr. Ginger Garner PT, DPT (42:23)

Yeah, that is incredible. It can be so hard to move bills through. I’ve gotten to, whether it’s fortunate or unfortunate, experience of doing that at the state and federal level, and it’s incredible amount of work. And I don’t think the average person walking down the street realizes just how much work it is to advocate for getting anything passed at a state level or a federal level. It is incredibly difficult is an understatement. Yeah. So that kind of answered my question. had a question about patient advocacy and so that, what you described is kind of the ultimate in… empowerment, know, empowering your patients knowing that you’re not just acting at a clinical or a research level. That policy is, you know, where the rubber meets the road and that’s where things happen and when we can increase awareness that much to get that kind of traction, great things happen. And so you guys are providing an amazing template and an incredible like dissertations worth of work in doing this. So thank you for doing that. And I definitely have more questions that I want to talk to you about later so that we can maybe do this in different states. one of the questions that I had was challenges in translating scientific research and discoveries about endometriosis into real world clinical solutions. Has that -I’m sure that conversation has come up. So can we talk a little bit about that?

Dr. Elise T. Courtois, PhD (44:08)

It’s a tough one. I think this is why we are trying to also integrate the education component in this program. We want to make sure that we have a decent way to basically show what we’re trying to achieve. So through our webpage, we are trying to build this kind of centralized resource for different people, whether they are members of the public, researchers, healthcare providers, and trying to communicate what we’re doing. In terms of, can we translate that into something that has a direct action or direct impact at the treatment level into patients? The hope is here. Hopefully we’ll achieve that.

My belief is the more we learn about this condition, the more we will know how to address it. And we still are in the learning process. We still don’t understand so many things about endometriosis that before we get to do ABC as a treatment, maybe we need to understand deeper the biology. And hopefully this is what we will achieve with this biorepository in this program. Sensitizing people, opening the mindset that this is something super important that we have to address. Women’s health is key. We’re half of a population, so we should know everything. We still don’t understand exactly how the endometrium cyclically regenerates, at least at the biological level and what else the stem cells for different compartments. And to me, this is fundamental if we don’t understand properly features of the female biology then we’re going to have difficulties in applying things to the patients. So to what Danielle was mentioning, we need to have more targeted therapies. We need to have more specific drugs. And I believe we will be able to do that once we can diagnose patients early and once we understand exactly what are the key features of lesions and differences between those lesions.

Dr. Ginger Garner PT, DPT (46:36)

Yeah. So from, okay, this is a question for both of you. This is kind of maybe one, a good one to end on actually. So from your clinical perspective, Danielle and Elise, from your molecular biology perspective, what do you see as the future, like emerging trends, technology that you believe is going to have, you know, a biggest impact on the future of endotreatment?

Dr. Danielle Luciano, MD (47:08)

I think on a clinical end, think the biggest impact we’ll be able to have on endo is an early diagnostic, non-invasive early diagnostic tool. I think the fact that we’re still diagnosing this disease by minimally invasive surgery is kind of insane. That we don’t have a blood test or even a radiologic finding that is 100 % conclusive for this disease. I think that is where we need to start and understanding the disease is going to get us there. And we just have to keep taking these tissues out and bringing them to the lab and figuring it out so that we can figure out how to diagnose this on a systemic level so that we can catch it early and we’re not diagnosing this disease at 27, we’re diagnosing it at 16 or 17. And we’re helping our patients to have better lives. Because I think, you know, if theoretically we can diagnose it earlier and we can treat it earlier, or manage it earlier, because we don’t have a treatment, we just have management, the girls are gonna miss less school. And if they miss less school, they’re gonna miss less work and they’re going to miss less social events and their quality of life is going to improve. And that to me, know, treatment is important, but diagnosis, I think, makes all the difference in terms of also the headspace of these women, right? They come to be so frustrated and so tired of being ignored. And, you know, that adds to everything. We know it does, right? We know it makes everything worse when they’re frustrated and upset. So, and they have a right to be. So if we could diagnose this early, that would be it. Like I would take treatment way after that. That would be my first.

Dr. Ginger Garner PT, DPT (49:04)

You brought up a really good point because as a therapist, I get to see them for an hour, hour and a half at a time. And you quickly realize and appreciate that it feels like half of what you’re doing is going to be addressing some of the biomechanical, fascial issues, right? But then the other half of that is getting them to believe in themselves again, because if they’ve been in the healthcare system long enough, they no longer believe either in the healthcare system or believe that they even have what we call, you know, in the public health space, self-efficacy or any locus of control, meaning do they have control over the treatment? Can they do what it’s going to take to get better? Is anyone going to do what it takes to get better? Or have they learned how to gaslight themselves now? And that’s a huge roadblock. And it is definitely not a

a victim shaming type of situation where we just say, just, you you need to be stronger. You need more grit. You need more resilience. It’s like, no, you just need to trust yourself and trust your story and believe your body. I believe their stories, right? So that they believe in themselves because one of the most critical pieces of whether or not someone will be successful, at least from the therapy perspective, from my perspective, is if they believe that they can be better and they believe that they can be in control of their healthcare.

Okay, well, Elise, so share with me what you think. What do you think about future technologies, where we’re going with Endo? What can we do? What are we capable of?

Dr. Elise T. Courtois, PhD (51:02)

So first I will say what we can do and what we’re capable of will really depend on how much money we invest in research. We can do quite a lot, but the technologies are advancing very fast. But we need to be able to prioritize endometriosis and what you did mention earlier, untangling endometriosis to just reproductive disease is going to be key, trying to understand exactly how it is intermingled with other co-occurring conditions, how it impacts before you’re 18 or after you’re 49 is going to be key. And I would say the sky is the limit as long as we’re for dollars to the sky and we get some of it. So that has been something we’ve been focusing on lately, is really to try to…to push the discussion to increase funding for research because we will be able to get a much better understanding once we invest and we prioritize. The numbers are just, and it’s astonishing, they are not enough to get more funding and then, we’re talking a million individuals in the US, we’re talking about billions in financial impact and…we haven’t gotten that huge investment from the federal level for research or from pharma companies yet. So hopefully that will change what we know of the disease and as there will be more interest, there will be more opportunities and we will know more about it. I would say let’s prioritize endometriosis.

Dr. Ginger Garner PT, DPT (52:58)

Yes, yes, yes, that’s a very good way to end. Let’s prioritize endometriosis. To that end, tell us how people can learn more about EndoRise and what you’re doing and to support that and help increase awareness because I am sure that you all are going to want to learn more about that.

Dr. Elise T. Courtois, PhD (53:23)

Yes, so we have a webpage, ctendorise.org or just endorise.org. We invite everyone to check it out. There’s quite a lot of information there, so hopefully it will be useful. Yeah, we’re going to be trying to renew this program and to get more support for the next couple of years in the state of Connecticut, so we hope that we get all the endorsements that we need. Yeah, that’s pretty much it – Jackson and UConn webpage.

Dr. Ginger Garner PT, DPT (54:00)

That’s amaz- That is amazing. You guys have done like a courageous amount of work to get to where you are. So I want to thank you for doing that. We are going to put all the links that were mentioned in the show notes. So you guys make sure to listen to look to read those and thank you. Thank you, Dr. Danielle Luciano and Dr. Elise Courtois. Thank you so much for being here.

Dr. Danielle Luciano, MD (54:32)

Thank you. It was a pleasure.

Dr. Elise T. Courtois, PhD (54:32)

Thank you. Yes, thank you so much.