Hello everyone and welcome back to the Living Well podcast. I am Ginger Garner and today I am with Dr. Sallie Sarrel and I am overjoyed because you guys are gonna be like stunned at the work that she does and how passionate she is about it. Everything and all things related to endometriosis. So welcome Sallie.

Dr. Sallie Sarrel PT, DPT (00:24)

Thanks for having me, nice to see you.

Dr. Ginger Garner PT, DPT (00:26)

Yeah, it’s good to see you too. Before we jump in, I want to tell you guys a bit about Sallie. For those of you who don’t know her, she does have her doctorate in physical therapy from Rutgers and a master’s of arts and teaching from the University of Vermont, a state that I still have not gone to. What is wrong with me? I have to get there. I know. Her work in the treatment of endometriosis and dyspareunia is incredible.

She’s supported by multiple organizations, Endowhat, Endometriosis Research Center, and has lectured worldwide, including in China and Brazil. In 2016, she was the recipient of the Below the Belt Award for the Women’s Health Association for her dedication to the field of women’s health. And her ability as a patient with Endo to have made lasting changes in the pelvic pain community. Her blog, Sallie Speaks, has been republished worldwide.

She has published research on the bladder and endometriosis, the role of hernias and endometriosis, and the role of the pelvic floor as a driver of pain in people with endometriosis. Sallie shares my frustration with standards of care in the US for endometriosis and her desire to further endo education. 

Inspired by her to partner with Dr. Andrea Vidali to create the Endometriosis Summit. Which is the largest endo meeting in the US of its kind. And y ‘all, the next one, so just put it on your calendars, is March 28th through 30th, 2025 in Orlando, Florida. And Sallie, by the way, sees patients and treats patients through New Jersey, Florida, and New York City, as well as online as an endometriosis coach. Welcome.

Dr. Sallie Sarrel PT, DPT (02:12)

Thank you for having me. I feel like I need to shorten that bio and just say, Sallie exists from now on.

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

I love to let people know exactly what all the superstars that come onto the podcast do because, you know, if we give it a little short one or two sentences, you don’t really get to appreciate the amount of time and effort that you just put into what you do. 

I am so excited to have you on today because I want the listener to understand what life is like, you know, living with endo. Why is it so freaking hard to find help and solutions? And, you know, why did you choose to start the endo Summit? We’ll get into like all those questions. 

But the first question that I have, because as I sat down with many women with endometriosis, and you know, I’m one of those. It’s not often that we get to sit down and like, swap stories and share our perspective. And I’m just wondering how long did it take before you got a proper diagnosis?

Dr. Sallie Sarrel PT, DPT (03:24)

It took me 23 years to get a diagnosis of endometriosis. And I say that being that most of my family is in medicine and gynecologists, and it still took that long for me to have diagnosis and, ginger’s pelvic PT also, when I did all my pelvic PT training, endometriosis was not talked about the way it’s talked about today. 

So I didn’t think I could possibly have that. So then I was a pelvic PT walking around, not understanding what was going on with my own body because we just didn’t do whole body education the way we did years ago.

Dr. Ginger Garner PT, DPT (04:08)

Yeah, yeah. There’s a level of heaviness that goes with that because as a caregiver, you’re putting out all this time and energy and learning, helping other people, and at the same time, you’re in a great deal of pain yourself.

Dr. Sallie Sarrel PT, DPT (04:23)

Yeah, I think my biggest symptoms, like many people out there listening to this, were all the bowel symptoms. So the bloating, the IBS pain, I had horrible back pain, and I was always able to normalize those symptoms. It must be my treatment table isn’t at the right height. It must be, that I’m carrying too much. I ate the wrong thing. And so because I didn’t have initially the flat out symptoms of painful periods, because I thought what I had was normal. 

I had all those bowel symptoms and I didn’t realize I was having a disease rather than just like I thought I was fat all those years. Because when you go to the doctor, we’re going to have a whole panel on fat shaming at the endosummit. But you go to the doctor and you’re like, I’m bloated and they tell you to exercise more. Did you try losing weight? How many times should I try losing weight? Also I have PCOS. I’m never going to lose weight.

Dr. Ginger Garner PT, DPT (05:20)

Yeah.

Dr. Sallie Sarrel PT, DPT (05:20)

It was a very frustrating situation.

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

Yeah, yeah. I, to emphasize to all y ‘all listening, this isn’t like, this didn’t happen like, it did happen decades and decades ago, but it’s also happening now. Like women are being told this now by GYNs. How do I know that? Because, and Sallie knows that, because we see patients all the time that come in and are telling us something similar. That their GYN is overlooking or blowing past or saying that they’re bloating, their discomfort, their misdiagnosis of IBS really has nothing to do with any gynecologically driven issue at all. 

And there’s a lot of misinformation surrounding that. Starting with, well, one thing that we love to preach from the rooftops is endometriosis is not just a reproductive disease. It’s a systemic disease. So these women are being told this today, like maybe unfortunately, even as we’re like recording this.

Dr. Sallie Sarrel PT, DPT (06:20)

Right, I had a patient last night who’s had rectal bleeding for 15 years. 15 years of rectal bleeding. And she had to pursue an endometriosis diagnosis off of Instagram. Right? That’s how she started to find her way. But she’s been to every doctor under the sun and all they ever told her was, be hemorrhoids, try losing weight. I did not plan it. And try losing weight, that’ll put less pressure on the hemorrhoids and I can pull up her MRI and see the endometriosis right away.

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

It’s devastating to go through that. And on average, it’s hard too because there’s not enough research on it and there’s not enough tracking of it across all populations from adolescents all the way to postmenopausal, how many healthcare providers on average that women will have to go through and see? Like, I know how many I went through, you know how many you went through, but tell me a little bit about your experience with that in seeing patients, but also yourself.

How many providers are these points of contact are these women seeing before they actually get a diagnosis?

Dr. Sallie Sarrel PT, DPT (07:33)

Well, for myself, in the last year, just in the last year when I was seeking diagnosis, I had seen 14 different doctors trying, because at that point I was sick enough that I was barely able to work. And it’s interesting because my father had had triple bypass that year. So one doctor actually told me it was an emotional reaction to that. And then I’ll tell you, I think that now I see this other trend where endometriosis is talked about more. So maybe somebody will go to the GI and say, I think I have this. And then the GI minimizes in a whole different way. Before it was never mentioning endometriosis. 

Now I see the doctors know that endometriosis can happen, but they sort of do the ultimate eye roll at the patient and those, that doesn’t really happen. You should try treating the IBS. Like the woman is 27 years old or 28 years old. She doesn’t need to try treating the IBS more. And we don’t need to wait until the disease is so deepened and inflamed that the person needs an even bigger surgery. And then the other piece that I always mention, and you can look at the research done by Julia Mandeville. Like I am a white upper middle class woman who had access to everything. There are entire populations in the United States and the world who are being minimized a thousand times more than I was.

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

Mm -hmm. And that fits with the other statistics too in women’s health, which lets us know there’s very much a gender bias. There’s a gender research gap. There’s a healthcare justice issues related to racism because women of color, it’s going to be far worse for them. Preconception and all the way through because we know that from just a maternal mortality or women of color giving birth, they have at least a four times higher risk of dying, right? 

So we see this thread, this common thread through medicine of women not being listened to and that being your risk being higher as a woman of color. So it’s a general problem, an invasive, cancerous type problem in our healthcare system of ignoring women and endometriosis, unfortunately, is a big part of that.

Dr. Sallie Sarrel PT, DPT (10:05)

And then when we are ignored so much, we begin to think what’s going on is normal. And that’s the danger. I talked to somebody and they had to sit in a warm bathtub for 20 minutes before they needed to pee if they had their period. And she grew up like that because her mother was the same way. And she would go to doctors and they would be like..yeah, you know. Even urologists and I think then she normalized how that is when in actuality that’s very advanced endometriosis.

Dr. Ginger Garner PT, DPT (10:42)

Yeah, that’s just an incredibly important part of what I wanted to get to. So this is a great segue is on the one hand, you have healthcare providers who will do exactly what you said, go, I don’t know. You seem to be managing it, get in the tub, whatever. They’ll downplay it, they’ll marginalize it, they’ll minimize it. But then what happens out of that is if it’s happened enough, if it happens enough, we start gaslighting ourselves, right?

normalizing what is a significant pathology or pathologizing on the other hand, a medical provider will pathologize your normal response to endometriosis, right? They’ll pathologize your perception of pain and then not believe you. So that is just like that’s a huge quagmire to sort out in your head when you’re told it’s all in your head and then you don’t trust yourself anymore.

Dr. Sallie Sarrel PT, DPT (11:41)

Well, you definitely, your story, I don’t know how much you share with your listeners, but your story is a perfect description of that. And my story to the extent where I had a lot of hip and groin and what’s called sidewall pain, both from the disease and from other drivers of pain, and I experienced…

It must be in my head, first of all, all women have pain. Like I couldn’t go to the bathroom because if the stool passed down the side wall of the pelvis, I would actually grimace and cry. So then I was afraid to go to the bathroom in public because who could go to the bathroom when they feel that? And then the other problem was once I was diagnosed, I experienced a whole different form of gaslighting in that the doctor I was seeing believed only GYN organs drive pain. 

And so I could be sitting there. I remember saying, but look at my labrum on MRI. That’s again, I didn’t plan this, but again, if you lost weight, that would be fine. No, like, and how about I have a lateral femoral cutaneous injury and how about, but this fits this picture I found with the nerve root. No, no, that doesn’t happen.

And then they waited until I was asleep and couldn’t consent and just took the ovary without consent. And the pain was still there. And then I was really making it up because they took the ovary, nothing more I could do. Not that there isn’t a set of nerves, not that there isn’t a joint capsule, not that there isn’t an abdominal wall, a pubic bone. It was like, it’s crazy how it is out there.

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

Yeah, yeah, it really is. And I’ve shared little bits and pieces, you know, here and there and different seasons of the podcast about my own story and my family. I mean, I even had family members, I had no idea they had endometriosis. And after my diagnosis, I talked to them on the phone and they’re like, yeah, infertility, miscarriages, and finally diagnosis of endometriosis. 

It was…it is something that our previous generations, you know, mothers and grandmothers and aunts and great aunts didn’t talk about. So just to be able to share those stories because I had no idea, for example, a family member actually had it too. I’m like, how invasive was this in my family? And I could have probably gotten help earlier had I even known, but no one was talking about.

Dr. Sallie Sarrel PT, DPT (14:26)

Yeah, I also think in my family there was quite a bit of that because there’s seven years between my mother and her sister and you know, they didn’t have birth control in those days. So I feel like there’s something we’re missing. But the other piece was that I came from a family that once the doctor sort of said you’re fine or they didn’t really understand or name their own disease and their own pain was very minimizing in itself. 

So if I was throwing up and wanted to stay home from school because of my period, it was, this is what it’s like to be a woman. Or if we were out shopping and I had very bad fatigue and I wanted to go home, no, you need to suck it up. 

And also I had amazing attendance records with work for how sick I was because I was compulsive about not letting anyone see that I was ill because in the environment I was raised in, you couldn’t show weakness for female problems.

Dr. Ginger Garner PT, DPT (15:32)

Mm -hmm. And by the time I remember being in high school and getting to high school and hearing a female PE teacher saying, pain is normal. We don’t care if you have pain. You’re not missing the run. You’re not missing the basketball. You’re not missing PE for any reason related to female issues. That is like…

Dr. Sallie Sarrel PT, DPT (15:54)

I hate this one. Pain is weakness leaving the body. I mean, where is this weakness? Because I’ve been in pain for like 40 years now.

Dr. Ginger Garner PT, DPT (15:57)

Yeah. And I remember one specific thing, which I had really no idea the depth and the width of how far this could go. Like as a 16 year old, as a 22 year old experiencing horrible infertility, et cetera. And had completely normalized, you know, walking down the sidewalk with my dog who’s asleep across the room here. And then in the next moment being on my knees in pain.

Because I couldn’t breathe and or digestion pain was excruciating. And then in the next five or 10 minutes, I regained the ability to breathe, get up, finish the walk. And the thing is I didn’t go out into the walk pain-free, it was already hurting, but I’m like, keep going, because that’s what we’re conditioned to do. And you normalize that level of pain until you don’t really know what being pain -free may feel like because everyone around you, the social and cultural conditioning is also going to push you in that same direction.

Dr. Sallie Sarrel PT, DPT (17:07)

Yeah, it’s interesting. One of the questions on the intake that I do is, do you know where every bathroom is on your way to work? Right? Because especially when I practiced in New York, people have to know what bathroom is going to be open to the public while they’re walking to work if they have to go to the bathroom all the time.

Dr. Ginger Garner PT, DPT (17:28)

And what foods that you’re able to eat and actually still go to work versus the ones that, you know, that just, and they could be perfectly healthy. Like it’s not junk food. We’re not talking about processed food. We’re talking about perfectly healthy food that people know, hey, can’t eat that and expect to go, you know, to work.

Dr. Sallie Sarrel PT, DPT (17:46)

I actually have concerns about, you know, now people are gaslit and minimized so much. They fall victim to the snake oil cure side of endometriosis, which is tons of internet coaches telling them to heal their cortisol, which I haven’t really seen decent proof on that, or that if their microbiome were fine, then they wouldn’t need to deal with the disease.

Dr. Sallie Sarrel PT, DPT (18:15)

We’re not there yet in the research, but people are so desperate for help. They’re paying for these programs or they’re paying these practitioners everything they have. If they had been listened to in the first place, they wouldn’t be in a situation to be taking advantage of.

Dr. Ginger Garner PT, DPT (18:32)

Right. And if we had a really integrated, multidisciplinary, solid approach, aka standards of care, you know, but we’re so far away from that. We don’t even have standards of care for postpartum and post-abdominal surgery care for women with like C-sections and, you know, myomectomies and just postpartum care in general. We’re still fighting for that. So yeah, we’re such a long way from being able to have that solid care where it’s multifaceted, it’s multidisciplinary, it is rooted in the evidence base and every woman gets it, you know, when they’re diagnosed.

Dr. Sallie Sarrel PT, DPT (19:07)

Yeah, I’m looking forward to at the endometriosis summit. Shanti Mohling is going to present almost a full hour just on that. What should the integrative care look like with medical and functional medicine? What should it all pan out to be? I’m really excited for that.

Dr. Ginger Garner PT, DPT (19:23)

Yeah, yeah, I’m excited about that too. So for the listener, Dr. Shanti Mohling is an MD. And last year, I was super excited to see that there was the attention given to the gut microbiome and to the estrobolum or the estrogen and what our bodies are doing with estrogen and to the gut microbiome and how they interact. Because no, it’s not curing endometriosis, but if we don’t attend to it, it’s not going to help if we don’t, if we ignore it. It should be part of that interdisciplinary multimodal approach.

Dr. Sallie Sarrel PT, DPT (20:01)

She’s a superstar because she started in the myofascial release and then went to med school. But so she has a different viewpoint, I was, we did have a discussion that there were people in the audience who sat through that microbiome talk and then sort of jumped to the conclusion. If we did dietary interventions on teenagers, would they ever need surgery? And that’s…You can optimize a system, but you can’t make disease disappear.

Dr. Ginger Garner PT, DPT (20:33)

Right, right, yeah. It is one of the things that I like to actually mention because I would consider my diagnosis incredibly delayed by decades and decades and decades. Knowing that I have had pain since day one. But when you look at what I do for a living, can you mitigate that level of pain? If you’re like always optimizing inflammation and always optimizing gut microbiome and always, right, getting adequate movement and stuff? 

Can you survive, not thrive, but can you survive? Sure. And so I think that’s a really good point that you’re making. No, we can’t change the course of endometriosis and cure it or stop it in its tracks. But I think it’s also a reason why I might have been able to go as far. Because of staying, of that being a part of, 100 % a part of how I lived and what I preached every day. And did I still need surgery? Yes, I did. And did it save my life? Yes, it did, right? So it’s everything together that’s important.

Dr. Sallie Sarrel PT, DPT (21:41)

Let’s talk about a statement you just made because that’s something I always want people to understand. Do you want to survive or do you want to thrive? And that’s a decision you have to make if you’re in a place where you’re sort of just getting by in life, but you’re not in a world where you’re flourishing or you have joy or you’re able to get through the day. Are you surviving or are you thriving? 

Because everything I do in my career is to enable the person with endometriosis to thrive. You know, we may not find a cure. First, we have to find what really causes it, but we’re going to get to a point where we can enable people to thrive with this disease.

Dr. Ginger Garner PT, DPT (22:31)

Yeah, and to create the environment because I know that, oh my gosh, I’ve had so many conversations with colleagues in the space about it, that when you have been medically gaslit, when you’ve been dismissed, marginalized, just blown off, told it’s all in your head, told you that’s an anxiety or whatever, or like you mentioned, any of the other things that can border on when people tell you they can stop endo in its tracks by changing what you eat or whatever. Your trust is broken. Your trust is broken in the system that’s supposed to protect and keep you well and keep you safe. so rebuilding that trust is a big part of it. It’s why I wanted to do this season, right? It’s why, hey, and I’m wearing this, t -shirt. Yeah, hold that shirt up.

Dr. Sallie Sarrel PT, DPT (23:20)

You’re wearing that. You know, there’s also these that people can still put on. Can people see it?

Dr. Ginger Garner PT, DPT (23:28)

Yes, endometriosis is not endometrium.

Dr. Sallie Sarrel PT, DPT (23:31)

Yeah, and we have very cool things in store coming up, way beyond sweatshirts and t-shirts.

Dr. Ginger Garner PT, DPT (23:35)

Yeah, so, and t-shirts. Cool. So I wanted to wear my t-shirt because when you buy that t -shirt, now we’re making a departure for a second, but y ‘all hang with us. Then you’re supporting the Endometriosis Summit, which helps forward what we’re doing with trying to do this. And that is of course, Sallie, I want your absolute 150 % input on this. But from my perspective and where I’m sitting about what the Endosummit does is to reestablish trust in that system after people have been medically gaslit. 

To tell them there is a standard of care. It is multimodal. It is interdisciplinary. It’s not just excision surgery and it’s not diet alone or gut microbiome or any of those things. It is everything together steeped in the research to say here, this is for you, this is what you deserve. You can trust, you can put your trust in those people who are putting that effort and work and research into it.

Dr. Sallie Sarrel PT, DPT (24:39)

And trust is a scary word because for the most part, we’re not even able to trust our bodies. It’s interesting, I went out to lunch with my father and we had like a 10 minute discussion on where I was gonna sit at the table. Did I want the booth? Did I want the chair? And it isn’t that I’m just an annoying privileged person who wants to discuss where I’m gonna sit because if I sit wrong, then I’m not gonna be able to come back and work because my SI joint is going to hurt so much. 

So like we’re asking people who live like that for years and years and years to trust their body. We’re asking also the whole other piece of it is that women who thought their whole lives it would be nothing to get pregnant, that’s the ultimate betrayal by your body.

Dr. Ginger Garner PT, DPT (25:11)

Mm -hmm.

Dr. Sallie Sarrel PT, DPT (25:29)

Right. And also not being able to pee or to pee too much, not being able to poop or to poop too much, also betrayed by your body. And so first we have to ask people to teach people how to trust their bodies again. And then we have to teach them how to trust the world again. And I think, meeting others with the disease fills your cup up a lot.

Dr. Ginger Garner PT, DPT (25:46)

Mm -hmm. Yeah, absolutely. It has, and this is kind of the take home point out of this moment of what we’re talking about is. It comes down to what impact did your experience of having endometriosis have on your mental health? Because if we can’t patch and put that back together and feel supported instead of isolated, then the most well laid out plan is not going to work.

Dr. Sallie Sarrel PT, DPT (26:22)

Yes, and I think we are paying attention to mental health a lot more. I was watching on ESPN Plus, Serena Williams has a 10 part series on her career. And one of the things she talks about was that when her sister passed away, her sister was murdered, that she needed counseling, but we didn’t ever say that it was okay in those days for athletes to need counseling or for somebody to take time off. 

Now you have other players that have taken time off for mental health. And I was thinking like, we have come a long way, but we haven’t come far enough because we don’t have mental health counselors in every surgical center in the endometriosis community. We still have a stigma, say somebody needs to miss work to have a session with a therapist. We still have…people are still experiencing trauma and not having a place to process it every day, especially with this disease, I think.

Dr. Ginger Garner PT, DPT (27:26)

Yeah, I think so. I think that last phrase is so important, especially with endo. Many women in order to get access to the surgery, need that maybe insurance is not going to cover it. They don’t have a surgeon in their state. They’re getting on an airplane. They’re getting in the car. They’re taking long road trips. I know I did to be able to access that care. And then you’ve got, yes.

Dr. Sallie Sarrel PT, DPT (27:49)

They’re traveling abroad. I really wanted to have a panel on medical tourism, but I see people traveling to India, Romania, Mexico, because they can’t afford care in the U.S.

Dr. Ginger Garner PT, DPT (28:01)

Yeah, because it is so incredibly expensive. And then that’s not even considering like the transition of what they’re going through, of putting all of their, you know, hopes into that basket of not even knowing. And many women go in, they don’t know the extent of it. They’re not even sure if it’s there, right? And just how do you even broach that subject with your friends and family? you have to have surgery? Wait, you’re going out of state? What’s it for? What you don’t even know, you know?

Dr. Sallie Sarrel PT, DPT (28:31)

And then like me, I’m sure they’ll get, I remember talking about when they had to collapse my lung and check for disease with a group of women at work. Now I’m a PT, everybody in that room was a PT or an OT. And I remember somebody saying to me, that’s not like what that disease is. It’s just like, they just clean out your pelvis. people are still saying that. And then the other piece, which you definitely experienced, but I really experienced is that people gather every single cent to have these surgeries or they put everything into the surgery piece and then they can still have a pudendal nerve issue, they can still have a pelvic floor issue, they can still have a bladder issue, a labrum issue, a hernia, they can still have abdominal wall imbalances or spinal issues but they’ve already exhausted every mental resource and every financial and physical resource to have the surgery. 

And then they think the surgery didn’t work because they have these other things they have to clean up the mess from. And it’s, you we wanted for years, you know, let’s make sure people get excision. But the second part of that sentence is make sure they get aftercare and multidisciplinary care afterwards as well.

Dr. Ginger Garner PT, DPT (29:30)

Right?

Mm -hmm, absolutely.

Yeah, I just had someone this week travel from out of state. And it’s not to say there’s not a decent provider in that state or no one’s capable of doing that or just we’re not bashing other pelvic PTs or whatever. That’s not the point. The point is the care that she did get was woefully inadequate and she had lost her ability to do everything.

And her pain was the same and or worse, even though she had an excellent surgeon, an excellent surgeon. And it speaks to your exact point that there’s all of these things that come along with. It’s a natural part of having surgery where muscles get shut off, some are too tight, some are not working at all. You have fascial problems, have visceral motility problems, you may still have a bowel and bladder problem, you may have prolapse on top of that now.

Dr. Sallie Sarrel PT, DPT (30:45)

You may have a connective tissue disorder or the microbiome inside the bladder is all screwed up because for 20 years people just gave you an antibiotic and told you to go home..

Dr. Ginger Garner PT, DPT (30:45)

Yeah, yeah. And so you’re coming off of all of these things and none of that is going to self -correct. So I think if there’s one message to send out of this podcast, it’s that excision surgery can be a very necessary part of it, but you’re not going to come out 100 % pain-free and then like ready to go again. There’s a significant amount of surgical deficits that happen, things that your tissues don’t ever really get the memo. Maybe it’s just your hip flexors. They didn’t get the memo that that endo is now gone and they’re going to throw a tantrum just exactly the same way they did before. And now…

Dr. Sallie Sarrel PT, DPT (31:37)

Right, like I remember a patient had surgery in the winter and came to me, the surgery didn’t work. And I said, well, let’s talk, let me look at your forms, let’s talk about it. And it turned out cause it was winter, somebody told her she should be active and she could only do the elliptical in the gym because it was cold out, she couldn’t walk outside. So what happens? Her hip flexors still decide they’re a postural muscle instead of being hip flexors.

And it set off the whole system. And in actuality, when you can work to balance the system, then she felt fantastic.

Dr. Ginger Garner PT, DPT (32:05)

Yeah, and that’s a hopeful message. That is the takeaway, I think, from that is not that, you’re going to need another year of therapy. You may not. You may need three or four visits. Maybe you need six months. It depends. It depends on what the therapist finds for you. But the hopeful message is that you can resolve a lot of these things and then go on to thrive and not just get by.

Dr. Sallie Sarrel PT, DPT (32:36)

Yeah. And also, you know, look, we’re PT. So obviously we’re big with the PT, but it can very much be that you have SIBO. You need that treated. You have other issues maybe that maybe that acupuncture that can handle or that changing the bladder microbiome can handle. And it’s not just that you need PT after, you need a lot of things after. And then what I hear, unfortunately, I mean, Gin, this is the world we live in these days, is that’s too much work. 

And that’s hard. And to that I answer, I’m really sorry that everybody is in this situation. That the standards of care for endometriosis suck in this country. That unfortunately the care that you need is neither accessible nor affordable, and that it’s going to take a lot of work and a lot of multidisciplinary care to feel better. But let’s see how we can help you get there instead of just feeling overwhelmed and throwing it all out.

Dr. Ginger Garner PT, DPT (33:43)

Right, because then your world gets smaller and the whole point of going through the process of, if you have excision surgery is to open your world back up again and reclaim your life. Yeah, that’s…

Dr. Sallie Sarrel PT, DPT (33:55)

Yeah. It’ll be interesting the impact of some of the work that’s coming out of Europe with the deep nerve dissection and the space dissection, which can uncover areas of endometriosis that may have been left behind by even the greatest of surgeons. Because these are newer techniques that are emerging that find even more endo. And it’ll be interesting to see what kind of bearing that has on how much people feel terrible afterwards because now we’re missing less disease with these techniques.

Dr. Ginger Garner PT, DPT (34:33)

Yeah. And one thing that I’m very curious about, both professionally and personally, from my own experience is, like you mentioned, Dr. Shanti Mohling looking at and diving into and moving into that gut microbiome space, is what do these endometriosis, what do these lesions do to the microbiome over time? Is it creating these really stubborn biofilms where people have Candida or they have SIBO and things that they just cannot ever seem to shake. 

That might get better after excision, but then they’re still left with that the stubborn dysbiosis, which just means gut dysfunction that they just have a difficult time with processing their food and elimination. So I’m very excited about the future of that too. There’s just a lot of ground to research there.

Dr. Sallie Sarrel PT, DPT (35:29)

What’s interesting is there’s a lot of that research coming out in the bladder world, especially for the biofilm and disruption of the biofilm being connected to what used to be called interstitial cystitis, right? But this is also what I see, because I go to AUA and I do a lot of work with the American Urological Association. By and large, nobody listens to that research and they think it’s so on the fringe. 

And then when you go into the patient groups, they all report how much it’s really helped them. And so it’ll be interesting. And the other thing you see in those patient groups is that how involved a connective tissue disorder is to the disruption of a microbiome. And if strength and if having the person live better in their own home, as some people call it will actually help them balance their microbiome just as much as anything else. But when that research comes out, I hope that our communities will really take a hold of it and listen to it and not just say, those are the crazy fringe people.

Dr. Ginger Garner PT, DPT (36:43)

Mm -hmm, yeah, because that’s part of, it kind of speaks to, and this is getting a little bit clinically nerdy, but for those of you listening, you may have never heard the term biopsychosocial, but it’s a term we’ve been batting around for decades now that’s very validated and it’s what should be used, but it’s often talked about from an academic standpoint. And it’s just recognizing that the softer aspects of medical care, the psychosocial, can be just as important as the biological. 

And if that’s a new concept to you, I want you to take it and embrace that because all of your providers should be using not just that biomedical, you think of the nerdy geeky science side of things, but also how our body embodies the feeling of anxiety. How do we embody the feeling of being medically gaslit and ignored or marginalized?

Because you see that physically, right? And people experiencing migraines or facial tension, they lose their voice, right? A host of things where our psychosocial support or isolation or a lack of support then manifests itself physically.

Dr. Sallie Sarrel PT, DPT (37:58)

Absolutely.

Dr. Ginger Garner PT, DPT (37:59)

Yeah. So what did you feel? I know what I felt when I woke up in recovery and a family member leaned over me and said, you were right. It was endo. I know what I felt. What did you feel?

Dr. Sallie Sarrel PT, DPT (38:17)

Well, I sort of Andrea, Dr. Vidali and I call this the suffering Olympics. Like people who need to, come at not to be validated, but who need to come out of surgery and waive their operative reports on Instagram. had 27.8 lesions. 

And, unfortunately when I was diagnosed, there was a doctor where I was living who sort of feeds that. So they wake you up screaming how many lesions you have and to sort of cultivate what Andrea calls the suffering Olympics. So I would not say my response is what I would want a patient to want, but I can say that as I went home and started to heal a little bit, like I would say about six to 10 days out, it was a huge process of grief. It was like downloading trauma from like all the years. 

Like I remember going to a gynecologist and the story’s very funny. You should ask me about it on the street. But one of the things the speculum hurt and when I said, ow, she said, it doesn’t hurt that much. And then like, I was afraid to go to the gynecologist for years. And now I look back and especially in that initial post-op, I was like, see, see what happened to me.

 Or I think about when you go to the ultrasound tech and they say things like stupid things, they’re trying to fill space. I get that. And they’ll say something like, you’ll get pregnant no problem. Or I’d love to know where this baby is because I, after three rounds of IVF and nine surgeries, no baby. I thinkI think about the PTs that I saw for my hip that were like, you could do the exercise just, you know, when you’re in quadruped and they’re trying to get you to contract both sides evenly. Like I was never going to do that. And I felt like those first weeks after surgery, I was like downloading all these trauma experiences. Plus you have the hormones and the anesthesia in your system and you’re like randomly walking around crying. That’s what I felt.

Dr. Ginger Garner PT, DPT (40:36)

Yeah. Yeah. You touched on a word that is so true. And I think the word bitter, sweet kind of describes that because there is a lot of grief. That word grief just sits so heavy. like a rock in your pocket that feels heavy at first, but then the longer you carry it around, the more it contains more of the memories, the memories of what you overcame, the memories of that, you know, did give you that sense of grit or resilience instead of it just carrying grief. But you’re right, it’s both, you know. It’s all of those things. Yeah, yeah.

Dr. Sallie Sarrel PT, DPT (41:18)

Yeah. And it’s anger, right? because a, the world had normal expectations of you, but you had this horrible disease. No one could see.

Dr. Ginger Garner PT, DPT (41:28)

Nobody, yeah, for all intents and purposes, nobody cared. They just wanted you to show up and do your job.

Dr. Sallie Sarrel PT, DPT (41:37)

Right. And also you miss, you know, so many people along the way could have caught it, which is why I think mine is a lot of years ago. Yours is probably not as many years ago, but there weren’t programs like the endowhat nursing program that went into schools

Because the school nurse could have caught it. I was an athletic trainer, or I am an athletic trainer, but I spent a lot of time in the training room. How many times did people want to miss practice that I wasn’t mentioning the words endometriosis to them? Like there’s been a little bit of reform. It’s not great, but it’s a little better than it was.

Dr. Ginger Garner PT, DPT (41:55)

Yeah, you’re right about that. There’s so many different, I don’t know if you know, I was an athletic trainer too. I retired my license a couple of years ago. Yeah, I finally let it go. It was the first one I earned and I guess the first one to give up after 30 years, but none of that was attended to at all. You were expected to just push through all of it, whether you’re on the athlete side or the working side, or many times it was both, you know.

Dr. Sallie Sarrel PT, DPT (42:16)

Yeah. I mean, when we got those ATC licenses, I still have mine, but when we got those, was grueling to get. So like half the time I’d be throwing up next to the athlete who was also having the same problem. And we have to keep their schedule. So I’d be showing up at like five 30 in the morning. 

Yeah. And I was a swimmer in college. So like, I remember a coach saying I couldn’t take off for a day or two for my period, because if you add it up, that’s 12 months a year, that’s 24 missed days of practice. That’s 24 missed days of practice, you know, and now I’m like, what an idiot. Like who listens to that?

Dr. Ginger Garner PT, DPT (43:20)

That brings me to a really important point, which is what advice would you give to others who think they might be medically gaslit, especially related to the pain of endo?

Dr. Sallie Sarrel PT, DPT (43:34)

If you think it’s real, then it’s real. And you need to vote with your feet and go somewhere else until someone believes you because you need to believe yourself. Don’t give up doubt and don’t doubt yourself and you’ll find care one way or another. You’ll get yourself better care.

Dr. Ginger Garner PT, DPT (43:57)

Yeah, trusting yourself in a system that constantly tells you to second guess yourself or not trust yourself or push through. I think that’s a great message. Yeah. And we’ll also put links in the show notes, of course, to resources. Of course, you know, take a minute to explain a little bit about your advocacy and how you started Endo Summit, as well as, you know, where it is, who’s invited, all of that stuff, because our listener doesn’t know that yet.

Dr. Sallie Sarrel PT, DPT (44:27)

So the Endometriosis Summit is an entity. It educates patients, surgeons, physical therapists, occupational therapists, practitioners, and caregivers. And our goal really is to drive endometriosis forward. I am a believer that no matter what you do, you can make change. Suppose you’re a writer, write a blog.

Suppose you’re a video editors are very good people to be involved in this, but suppose you’re an artist, paint something or whatever your medium. I met someone who worked in clay and she would sew her vases together, sew the slabs of clay and I sat and cried, but that sparks conversation because she was showing herself being sewn together from the surgeries. 

If you’re just somebody, maybe you like to text a lot, you could start a texting awareness campaign. But I was a physical therapist. And in those days, we didn’t talk as much about endometriosis. And so I started mobilizing that way. I always tell the story. The first, I held a wellness event at the Pilates studio. They gave me the key. They didn’t even want to come to the Pilates studio, the people that owned it. They did, okay, here you go.

And the only person that came was the janitor and that’s cause he wanted the cookie that I was serving. And then the cookie was gluten free. So I think he even regretted that. So then the first endometriosis summit, had like 500 people and it’s a long way from janitor who wants a cookie to 500 people. 

So, and I think the endometriosis summit, well, we have a very extensive, exciting program with everything from neuro-pelviology to voice and the pelvic floor by yourself. It’s great. We have social events because people often don’t get to go somewhere where they’re meeting like people, where they get gluten-free and dairy-free food. They don’t get to be in warm weather and just relax with, I say their tribe, which find your tribe matters a lot.

We’re going to do, we think a cadaver lab. We’re going to do, don’t, don’t hold your breath on that, but we’re pretty sure. And I just think I never knew the endometriosis summit would unfold into this entity that it is right now, which is a worldwide force to change endometriosis.

Dr. Ginger Garner PT, DPT (47:11)

Yeah, it’s amazing. It’s amazing. So make sure that you check that out in the show notes. I have a couple of other questions because I think that in listening to the amazing resources that are available to them, there’s still that sense of fatigue and coping, you know, of developing. You have to develop a certain amount of resilience just to be able to put up with a lot of the BS that’s out there in order to find help.

So I have two questions, this is kind of a two-part question. One is, if you could go back in time, is there anything you’d do differently in your own personal journey?

Dr. Sallie Sarrel PT, DPT (47:52)

Of course, of course. I unfortunately trusted somebody who was seen by the world as like a leader and I really was brainwashed into believing that they have the skills to do it. So I think it’s important not to be brainwashed by like endometriosis fame.

I think ultimately I would have written on the top of the consent form, do not remove my ovaries because of course that was done without me consenting or knowing. I know that they, like legally they can do that because you sign a generalized consent form. It’s not about legality, but the problem that that was removed, that’s my biggest regret, that that was removed was A, the problem was from a hernia. 

So it had nothing to with their the ovary in the first place. And I show that picture a lot in my lectures. I’ve shown it at the endometriosis summit where I put tape where all the pain was. And then I put the nerve chart next to it and they look exactly the same. 

But the other problem was, and that’s a whole other podcast, is that it put me into premature ovarian failure, which then brought on menopause at a very, very young age. And I had to clean up that mess.

Dr. Ginger Garner PT, DPT (49:14)

That’s huge. That’s huge.

Dr. Sallie Sarrel PT, DPT (49:15)

And I will be, so we have, we have a menopause section at the endometriosis summit, but people should be aware that early menopause, which can happen even from losing just one ovary puts you at risk for cardiac risk, stroke risk, neurodegenerative disorders like Alzheimer’s.

 It actually puts you at a higher risk for breast cancer and it can put you at a higher risk for bone loss for and in my case, anxiety, weight gain, and a generalized malaise for life. And all that stemmed from removing an organ that didn’t have to be removed if we treated the right cause of pain. So by far, that is my biggest regret. 

My other regret stems from that in that people who go to fertility specialists, they don’t often think about the whole person. And I did all these fertility treatments that were never gonna result in baby and those drugs. And they tore my labrum in their fertility stirrups, because they’re a little different. I really didn’t, that’s not high on the list of things that I would repeat either.

Dr. Ginger Garner PT, DPT (50:34)

Yeah, yeah. gosh. Yeah, we could have a whole other podcast about that. I have some experiences with that myself. So on the coping side, this is second part. On the coping side, what fuels your fire on a regular basis? How do you cope with those? We’ve talked a lot about that bittersweet, the grief, the anger, the passion.

How do you cope with the physical and emotional aspects of that and what keeps you moving forward? Because you are such a massive advocate for people with endometriosis. So how do you do it? How do you keep going?

Dr. Sallie Sarrel PT, DPT (51:16)

So first of all, when I’ve needed it, I’ve sought counseling and I’ve accepted that help. It’s not just about sitting in the room, it’s about doing the work. I think the other thing is I found my tribe, the people who are going to hold me up. I have also a friends group of all people who understand what it’s like to experience this. And they know that I’ll go to the ends of the earth for them too.

And that connection has been very, very valuable to me. Now, I of course have other issues in my life and lost a parent and things like that. And I sort of revamped my life to be in an area where I can be outside more, where I can take a walk in the sun. I can breathe fresh air and not be in the city. Not everybody has that luxury. 

I also developed interests way outside of endometriosis. Which you have your, singing and you have, you know, and I’m not talking about yoga because I could do yoga with the patients. I mean, I really like, I am a very good tennis player. I am a pretty good pickler.

I do a lot of things outside of the endometriosis world to give myself a break. Motivation is sometimes hard to come by because I don’t have a team of people that help me. And so sometimes it’s like, I just have to get it done. And then I have to think about my motivation later because it’s overwhelming what I create.

Dr. Ginger Garner PT, DPT (52:40)

Yes, it is. You have created something amazing and I think that’s important to realize that, you know, oftentimes people perceive there’s some kind of, you know, staff working behind the scenes. But when you’re running something, I mean, I have direct experience like that too. It is often where you just know it has to get done and you don’t have the, you know, the luxury of depending on a dozen people or half a dozen people or even three people sometimes.

That you have to lean in and get it done. And I think that’s part of the grit of also being female on a planet.

Dr. Sallie Sarrel PT, DPT (53:34)

Right, I also think once you hit like that 45 and over, you’re just done with people’s crap. And I’m just, I’m not gonna take it anymore. So that also makes life easier. But for other people that are not in that situation, I think it’s like on Gilmore Girls, when Logan says rule number one to surviving the party is to form a sub party. So you always have to have like your tribe, your group of people that help you connect and survive this disease.

Dr. Ginger Garner PT, DPT (54:09)

All right. Yeah, that’s perfect. That’s a perfect ending. That’s a great place to stop and pause and then realize that we might have to come back to this conversation for the perimenopause to menopause and postmenopausal aspects of it, especially for primary ovarian insufficiency and things like that that really thrust you into a whole other complex layer of living with endometriosis. So, Sallie, thank you. 

Thank you so much from the bottom of my heart that for all that you have created, for those of you who have not been to the Endo Summit and you’re interested in it, we will put that link and others in the show notes for you to get you to those resources to realize that you can find a tribe if you’re feeling isolated, if you’re feeling those heavy emotions. There is help. Don’t be afraid to ask for it.

Dr. Sallie Sarrel PT, DPT (55:02)

Absolutely, thanks for having me.

Dr. Ginger Garner PT, DPT (55:04)

Absolutely.