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Better care for endometriosis starts here. It starts here, with this conversation with Dr. Sallie Sarrel, PT, DPT, who has personally experienced medical gaslighting and validation through her journey with endometriosis. And as a result, she has dedicated her professional life to changing the way we talk about and treat endometriosis and the women (mainly) who suffer from the disease.
“When endometriosis came for our mothers, they didn’t know. And when endometriosis comes for our daughters, we’ll be ready.” – Anonymous
Currently, at least 1 out of 10 women have endometriosis, and most of the time women are getting dismissed by their doctors (aka medical gaslighting) about their symptoms, or given a surgical option that does not fix/cure the disease. Dr. Sallie Sarrel hosts the Endometriosis Summit every year to bring together people with have the disease, and experienced providers to educate patients and providers.
She wants to make sure no one else with endometriosis gets lost in the healthcare system and struggles/suffers for longer than necessary. Dr. Sallie Sarrel is obviously extremely passionate about getting people better care for endometriosis, and you’ll notice this immediately when listening or watching to the interview.
For more information or links, please check out the resource section below. If you loved this podcast, please leave us a review, wherever you listen to podcasts!
You may also like to listen to our other podcast episode on endometriosis with Shannon Cohn, producer/director of the ground breaking documentary of endometriosis, Below the Belt.
Dr. Sallie Sarrel has a Doctorate of Physical Therapy from Rutgers and a Master’s of Arts and Teaching from the University of Vermont. Her work in the treatment of endometriosis and dyspareunia is unparalled.
She is supported by Endo What? and the Endometriosis Research Center (ERC) and has lectured worldwide including China and Brazil.
In 2016 she was the recipient of the Below the Belt Award from the Women’s Health Association for her dedication to the field of women’s health and her ability as a patient with endometriosis 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 hernia and endometriosis and the role of the pelvic floor as a driver of pain in people with endometriosis.
Sallie’s frustration with the standards of care in the United States for endometriosis and her desire to further endometriosis education inspired her to partner with Dr. Andrea Vidali to create The Endometriosis Summit – which is the largest endo mtg in the US of its kind.
Sallie sees patients in New Jersey, Florida, and New York City, as well as online as an endometriosis coach.
0:00 Dr. Ginger Garner: Hi, everyone, and welcome back. Today, I am here with Dr. Sally Sarrell, and she is amazing in so many ways. I’m going to give you a little bit more information about her in a minute, but I want to welcome you to the program today. Dr. Sally, thank you.
0:21 Dr. Sallie Sarrel: Thanks for having me. I’m excited to be here with everybody.
0:25 Dr. Ginger Garner: Yes, I am over the moon. I’m gonna brag on you just a little bit. So let me read for you guys the highlights of Dr. Sarrel’s lengthy bio here, because she’s definitely earned that. She has her doctorate in physical therapy from Rutgers and her MA, her master’s of arts and teaching from the University of Vermont. Her work in the field of endo (endometriosis) and dyspareunia is really unmatched.
She is supported by Endowhat and the Endometriosis Research Center, and she’s lectured all over the place, including China and Brazil. In 2016, she was the recipient of the Below the Belt Award from the Women’s Health Association for her dedication to and working in endometriosis, because we need lasting change there. And people need better access, early access to pelvic health.
Her blog, Sally 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. Sally shares my frustration and many people’s frustration with the standards of care in the United States for endometriosis. And her passion is centered around furthering endo education. And she has partnered with Dr. Vidali, who is up in New York to create the endometriosis summit, which is the largest endo meeting of its kind.
It’s a professional meeting that occurs annually. And the information about that as well as where you can find her will be in the show notes. So make sure that you check that out. Welcome, Sally.
2:17 Dr. Sallie Sarrel: It’s wonderful to be here. I point out that the endometriosis summit is both for professionals and for patients. Because one of the biggest issues with the standards of care in the United States is that it should be nothing about us without us. So we host everyone at our event. So there’s a few closed doors, but not many.
2:42 Dr. Ginger Garner: Well, that’s really good to know. And I think that’s a really important, important point to make, because there’s so much about pelvic health that can seem a bit of an enigma or mysterious, or what is it that you do? Because even healthcare providers don’t quite understand what we do and still aren’t getting a full education about what we do as pelvic practitioners. So it’s great that that is kind of an open door policy.
3:08 Dr. Sallie Sarrel: Yeah, yes, we created it that way.
3:11 Dr. Ginger Garner: So my very first question won’t be surprising then because, we’re both personally and professionally impacted by endometriosis in incredible ways. But you mentioned, I read that after two decades of pelvic pain, you were finally diagnosed. Can you share a little bit about your story?
3:35 Dr. Sallie Sarrel: Right, so I went through life believing that stomach aches and taking handfuls of Advil during my period, and chronic bloating were either normal or something that I did. And that even though my entire family is in medicine, I actually was already a pelvic health PT before I really understood what endometriosis was.
I thought that it was normal to have back pain. I thought my hip pain was entirely orthopedic. I actually was told, but first of all, I was always told it was because I was fat, no matter how many doctors I went to, which we could have a whole podcast on fat shaming and chronic pain. But I unfortunately had very bad ureter endometriosis and had chronic back pain from that and from the rectal vaginal endometriosis and I was told people have back pain.
I was actually almost thrown out of physical therapy school because I was told that if I couldn’t handle my period if I felt that I needed to go home, then I wasn’t a suitable candidate for employment. And I still wasn’t diagnosed through all this. And I kept thinking it must have been me. It must have been something I d
And I kept thinking, well, if only I ate better, if only I did this workout or that workout. I went to, I can’t tell you how many time I went to psychotherapy, which I do think psychotherapy is wonderful. But I was always told my pain was depression and something wrong with me because the antidepressants aren’t fixing it.
And then I had a very involved cyst rupture. And I had a doctor that was friends with my family very high up in an academic position. She called me from a cell phone in her parking lot, to basically whisper, you might have endometriosis.
And, and this begins the cycle of why people are so challenged in finding help, because if she said it on her regular phone, or she said it inside the office, she would have been required to give me what the office does, which is the either Lupron and Orilissa wasn’t out at that time. And so, she whispered the word and I then diagnosed myself over the internet.
And it really was 23 years of pain. Now once I was diagnosed, I will say my, like second thought after I came out of anesthesia, my first thought was that I was so like thirsty because anesthesia is very rough. But my second thought was that if this all happened to me, and I’m in medicine and I have access to almost anything that you could want, then this could happen to anyone. And it was my job to use my license to change endometriosis.
So though I have endured nine surgeries for the disease. I have dedicated a physical therapy practice to endometriosis. And in those days, I know everybody thinks they can make a buck on the niche now. But in those days, I was one of the only practices solely dedicated to endometriosis and its associated pains. And I really have done research and I’ve been very vocal in all of the other things that come with endometriosis, that too many normalize and think that it’s fine for them to feel right. And also too many go back to the same surgeon over and over and over again, who just keeps cutting for a problem that may not be endometriosis itself, right?
So we can’t keep cutting for bladder pain, and we can’t keep cutting if the pain is generated from somewhere else. And, and then I summed it all up, I think the legacy of my career is really the endometriosis summit, because we decided instead of me just being a little, to teach one patient at a time, maybe eight hours a day, three or four days a week, that we should teach the masses.
And that’s really what we do. And, and the most shocking, not shocking, but what touches me the most about the endometriosis summit is the people that come and we create a community and we ask you to share of yourself and people that come. And all our stories are different, but all our stories have the same thread. And that’s that at some point in our journey, we’ve been minimized. At some point in our journey, we’ve usually gotten the wrong treatment. And at some point in our journey, people didn’t understand what our experience was.
9:01 Dr. Ginger Garner: Yeah. I’m sitting here thinking about your story and your experience. And it would be wonderful if, and it’s not wonderful, it’s painful, it’s traumatic, it’s tragic, but it would be wonderful if it didn’t happen that often. You know, if your story was an outlier or something where most of the time people were getting diagnosed in a timely manner and they were getting early intervention. But I think the thing that makes me so upset about it and angry about your story is that it seems like that is the common story that happens with women and people, you know, that have endometriosis as a norm. And I know that’s what you’ve set out to change.
9:53 Dr. Sallie Sarrel: Yeah, I think unfortunately, it is the norm. Now, there’s a whole other side of this when you say, Oh, you wish people were diagnosed earlier. And that is how they’re diagnosed. If you go to a doctor and complain, and you have all the symptoms of endometriosis, and they put you on the pill when you’re 16 years old, and you take that till you’re 36. Because some doctor said I had endometriosis, you don’t actually have confirmed disease.
And what’s worse is people are put on much more involved drugs that cause them problems the rest of their lives. And yet the true diagnosis comes through surgical pathology. And so sometimes I think it’s great that we’re all here and we’re raising awareness about endometriosis and perhaps we’ve shortened that eight to 10 years a little bit, but my concern is shortened it to what? Because we haven’t increased access to care. We haven’t made sure that every single person with endometriosis can afford care and also can afford pelvic health therapy. as well.
11:02 Dr. Ginger Garner: Mm hmm. It’s a giant undertaking and commitment. That’s incredibly expensive to get the care that you need. That’s evidence based and that will give you the highest chance for a quote cure rate, which is surgical.
11:17 Dr. Sallie Sarrel: Well, and evidence based is a loaded gun in endometriosis. Because who is paying for the endometriosis research? And if it’s being paid for primarily by a pharmaceutical company, then who is it benefiting? I know you’ve had Shannon Cohn from Endo What on and one of the remarkable things that she’s done is she’s changed the Department of Defense funding so that endometriosis could be given research on an unbiased playing field. And I think when people say evidence-based, evidence-based, the majority of people performing excision surgery are not able to do research. So then the research is still based on outdated techniques. And I think that becomes a big problem, especially when you talk about insurance company reimbursement.
12:17 Dr. Ginger Garner: Right, right. So You know, mentioning the word evidence base leaves out that whole bit that you just described. Because when you’re sitting from the therapist perspective, we know that excision surgery is the gold standard and it’s pathologically, you know, driven and having the biopsy be done and know and then confirm that it’s endometriosis and then we follow up with our pelvic health afterwards.
But I think the majority of the population then thinks, okay, well, the care is based on whatever the latest research study said. But having that last bit of information that you described kind of fills that gap to let people know that what someone may say is evidence-based care may in fact be biased information and also out of date. Because, for the reason that you just mentioned, the people who are the experts in this, Dr. Vidali in New York and Center for Endometriosis Care in Atlanta and others like that, like you mentioned, aren’t doing that research. And so, how has that shaped what you’re doing now? Meaning…
13:35 Dr. Sallie Sarrel: Well, I also feel, you talked about, Oh, PTs know the excision surgery is the way to go. I still meet PTs every day of my professional life that don’t understand the difference between an outdated definition of retrograde menstruation and the newer theories on origins of endometriosis. Who still really believe that you don’t need surgery for endometriosis. And that if you do have surgery, surgery is all the same.
So I think we live in this bubble of expert PTs, because the pelvic PTs all know each other, we forget that we’re probably like the 5%. And the other 95% of PTs, they need to be listening to this podcast, and they need to be watching Shannon’s film, and they need to be coming to the endometriosis summit, because they’re not there yet. And especially in PT, and when you talk about what’s the goal of the summit is like, in PT, the two major pelvic health educational systems have thrown down with me multiple times because they want to use a definition for endometriosis that is based in retrograde menstruation. When we know that retrograde menstruation is a myth.
They want to list surgery as a last option, when in actuality, the patient should be informed of all of the choices. And those systems don’t really, those educational systems that go out to PTs, they don’t really care the difference between excision or ablation. And so that’s why we want better. The endometriosis summit is probably, I would say close to 40% physical therapists. And we want better. Look, I was listening to a great podcast. It was a beautiful day out. So I went for a walk. And all of a sudden, in the middle of the podcast, this is a very well known PT. They start talking about how if you just fix the microbiome endometriosis would go away.
Now they’ve been to blah, blah, blah, congress in a specific area of europe. In europe there are lots of problems with the truth about endometriosis and they’re finally showing that if your certain score on this outcome measure is so high it’s not worth doing surgery. And I think as long as we believe that junk then we’re not doing any better for people with endometriosis, because that is not helpful.
You want to talk about, you could have endometriosis and 70 other things wrong with you. And one of those other things wrong with you could be an issue with your microbiome. Okay. You want to sit there and say, if you healed your microbiome, then you’ll have no pain for endometriosis. Sorry, that doesn’t work.
16:36 Dr. Ginger Garner: Yeah. That’s crap. We could just call it what it is.
16:37 Dr. Sallie Sarrel: And that’s a great interview, hopefully in the future for you. Dr. Molling is publishing research on the microbiome. And although you have to do all those good things, it doesn’t fix it. And people want a quick fix because when they go to the doctor and ask for help, since the time they’re 16 years old, they get minimized. So then they become victims of that minimization because they get preyed upon by people selling coaching programs and endometriosis manager and things that are not going to help them but are going to profit off of them. This is a crisis in endometriosis as well.
17:22 Dr. Ginger Garner: Yeah. So you said we’re going to unpack a lot.
17:25 Dr. Sallie Sarrel: So much! So much!
17:26 Dr. Ginger Garner: Let’s unpack it because, oh my goodness, my first touch point with endometriosis was seeing my mother in pain for decades and not really knowing anything different. What does that do to me, you know, as a child growing up? It makes me not normalize her pain and suffering because that was traumatic for me. To begin with, it was 30 years ago, she definitely got the wrong treatment. I mean, it didn’t even, we weren’t even doing, you know, the right things back then for that.
But the point is, that has stuck with me for a while. So that when I hear people that don’t understand the difference between ablation and excision, I just want to go, okay, let’s talk for a second. So Let’s unpack that piece because we just throw that around.
18:19 Dr. Sallie Sarrel: So I heard the best quote once, and that was, “when endometriosis came for our mothers, they didn’t know. And when endometriosis comes for our daughters, we’re ready.”
And I think that true advocacy begins with endometriosis. And I would back up a step further than ablation v. excision, unless you did it with Shannon on that episode. In that the definition of endometriosis, this notion that endometriosis is endometrium. We sell t-shirts, “endometriosis is not endometrium.”
This notion that the endometrium couldn’t escape your body, so it went all over is wrong. And it’s been proven wrong in multiple ways. And it was deduced on cadavers who weren’t, it wasn’t even deduced on live tissue. And now it’s stuck around for so many years. So as long as we sit there and believe that retrograde menstruation is the cause of endometriosis, then people are going to have hysterectomies that are completely ineffective because the disease is outside of the uterus. People are going to take drugs that stop their period. But by the way, the period, it’s still all going to hurt because endometriosis has nothing to do with the endometrium. It’s at best a very distant cousin, histologically.
So the theory of this ablation surgery, which is burning off the top of the disease, is sort of grounded almost in patriarchy. Which we’re going to have that discussion at the summit this March of 2024. [Good.] It’s grounded in this notion that we might as well just burn off the top because the disease is going to grow back anyway, because the person is going to menstruate. And after all, it’s menstruation and this failure of this tissue to escape the body that causes endometriosis.
When the reality is that endometriosis is laid down when you’re in utero and becomes hormonally reactive, it also produces its own hormones. It also can make its own adhesions from the inflammatory insult. So the reality is that if we believed women, and because I believe they just like did this ablation for so many years, because what the hell? So what? A woman has period pain. Once they’re done having children, we’ll do a hysterectomy.
That’s really minimizing us. And more than women menstruate, I’m not minimizing that. but you know it’s minimizing that we deserved better in the first place and so that’s ablation surgery burns off the top you’ve really left behind the disease And in burning off the top of the disease, you’ve created eschar inside the pelvis, and a pelvic PT hates the ablation because it’s going to aggravate the pelvic nerves. And the pelvic floor is going to go into spasm as well from the presence of this inflammatory eschar.
So you have that from ablation. Or you could go the excision route where somebody is cutting the disease out at its root and removing the disease from your body. Now, your chance of recurrence is not nothing with excision. However, it is a lot less because the disease has been removed.
And it is, I think, when you take a step back and you look at the whole picture of life and of the history of gynecological diseases in women, like somehow it became that we didn’t deserve to have disease removed from our body. We should just burn it off until we’re ready to throw out our baby maker.
And you can, people will not see the expression on my face in the podcast, but you should only know that that’s a very patriarchal view and that people who have endometriosis deserve to function in society at whatever level they choose to. And excision should be accessible and it really isn’t, which may be a whole hour podcast. I don’t know if you want me to unpack that.
22:51 Dr. Ginger Garner: Well, yeah, you’re right. It is not accessible. I mean, we, we inside and I say we as in the pelvic PTs who are seeing people with endometriosis and, and compassionately caring for people with this every day, understand that excision surgery is the gold standard. It provides the people we care about, our patients, our clients, our family members, et cetera, with the best chance possible for the life that they deserve. But it’s expensive, and it’s not very accessible.
23:28 Dr. Sallie Sarrel: Well, let’s talk about why. Do you want to talk about why?
23:31 Dr. Ginger Garner: That’s exactly what my question was.
23:34 Dr. Sallie Sarrel: I’m also going to just mention that I practiced in private practice. But oftentimes physical therapists are tied down to who they’re allowed to refer to and who they’re not allowed to refer to, even if it might be in the patient’s best interest to go to someone that isn’t in their referral base. And I think I see that a lot.
And I honestly see practitioners even in private practice who know it’s the wrong thing to send them to so and so, but send them there. Because they’re going to endure the ablation surgery when they should, they know better, because that’s where they get their referrals from. And I think this business of pelvic health care is impacts endometriosis in a big, big way.
But ultimately, you have two main issues that affect the access to care. So the first is that outdated definition of endometriosis where people believe it’s endometrial tissue and endometriosis is not the endometrium, right? That guides medical education, right? So the 20 minutes a med student gets on endometriosis is all based in retrograde menstruation, even though it’s outdated. And it guides most gynecological education that it’s only about the period and endometriosis is a whole body disease. So you have that affecting access because whenever you want to go through a peer review on an insurance company they’re always going to pull up that information. So why do any better because it’s always gonna excuse me, it’s always gonna come back.
Now, the other issue becomes, and Dr. Jeff Arrington discusses this very, very well, but the other issue becomes that the American College of Obstetrics and Gynecology sets a standard of care that paces, in a practice bulletin, that paces where care should be in the United States, and most insurance companies will follow suit. So that particular practice bulletin likes to say things like the initial treatment of endometriosis should be birth control pills. I haven’t looked at it in a while. I don’t know if the second line of defense for them is GnRH agonist, which are drugs that stop your period that have terrible side effects.
And then it says, if there’s nothing else you can do, and you’ve tried out, I think Advil is the first one I tried. If there’s nothing else you can do, then you can do surgery. The issue becomes they don’t delineate between ablation surgery or excision surgery. So then, an insurance company goes to look at this, and they don’t see any reason why they have to pay for an out of network specialist. In endometriosis and ablation surgery could be like, maybe 45 minutes to an hour and a half. And they say they burned it all off.
But an excision surgery could be anywhere from two to eight hours long, and it can include a bowel resection. It can include a lung procedure. It can include a ureter lysis. And I think the issue is that an insurance company recognizes endometriosis surgery as endometriosis surgery. It’s the same thing, ablation or excision.
So when you go to reimburse a surgeon, who has now spent eight hours of his surgical time with you, then they’re getting reimbursed at the ablation rate. And then the really fun part about excision surgery is it’s a difficult skill to learn much like pelvic PT. They don’t learn this in a typical residency. Some of them do now a MIGS fellowship, minimally invasive gynecological surgery fellowship, but it takes skill and years and years and years to learn how to do excision and then they’re reimbursed as if they’re doing what a first year resident does.
And it you can’t keep the lights on there’s a very good doctor in Texas who’s actually going to retire because he can’t keep the lights on. It’s actually, he’ll make more money selling the building his practices in than continuing to practice. It’s just, you know, really a crisis. So there aren’t a lot of excisionists who have gone for these trainings. And then on top of it, there isn’t a lot of very good reimbursement. So excision can be difficult to find and hard to pay for.
So and now, of course, it’s become a push. We know that endometriosis cannot always be seen on all imaging. It’s really very reader dependent. So now there are newer and better techniques in terms of diagnostic imaging reading. And the excisionist has to go and take all those courses to be able to see what a radiologist is going to think is very subtle.
A gynecologist who’s been trained in these new techniques, which we’re going to offer at the Endometriosis Summit, but who’s been trained in these new techniques, has to have a better surgical team to approach them. It’s a very complex issue.
And then I think the last piece of it is that the patient is very frustrated. Look, I never owned a home. I never traveled until I was in my later 40s because I was always paying for care and always saving money to pay for care. I think the average 20 year old now goes online, sees that they have endometriosis. Right, through all the different groups like the endometriosis summit or Endo What or Endo Know and yet they can’t afford care and they are extremely angry.
They’re angry that their doctor didn’t mention endometriosis to them. They’re angry that their doctor pretty much blew them off and told them it was normal, even though it is not normal, this life altering pain. And then the other issue is they’re screaming at the four or five advocacy groups that are listening as if it’s our fault, because now we mentioned excision surgery is the probable choice for those with endometriosis, but how dare we mention it because it’s not affordable.
And it’s, you know, I think podcasts like this where people can hear and can understand that it’s okay to be angry because the situation sucks. It’s very, very important. It’s validating. [Right.] If we stop yelling at the groups trying to create change and all united together, we could be really good keyboard cowboys instead of really aggressive ones. Aggressive in the right way.
31:19 Dr. Ginger Garner: Yes. And, you know, I think about…I am a big advocate for increasing access to pelvic health. It’s one of the reasons that I actually ended up running for office several years ago, because I was pissed. I was angry at what was happening, having dealt with mostly women in chronic pain with a range of issues for this will be my 27th year. Also, I didn’t know you were an athletic trainer too.
31:51 Dr. Sallie Sarrel: Funny, I just did an interview. Yeah. The local high school needs someone and I was like, well, I’m kind of sitting here. I mean, you need someone for a couple of games or like, you know, and they were like, what do you mean? We can’t find anyone. And I’m like, well, like if I’m available, I can do it. And so, you know, But I never use it, but it’s funny.
32:12 Dr. Ginger Garner: Yeah, I don’t really use mine much either. But when I read you’re also an athletic trainer, I was like, oh, kindred spirit in another way. But getting angry is an appropriate reaction to how people have been treated and those of us who have it have been treated. And to be able to channel that through groups, you know, through what you’re doing is an incredibly powerful way.
I think that the more we keep talking about it, the easier it is to then organize and be able to do something at a larger level. Like what’s happening with Below the Belt and what they were able to move the needle on with awareness is incredible to let people know what the standards of care are. And that no, while pelvic PT is not going to cure your endometriosis, it’s a really important factor in prehab and mitigating the, you know, hormone driven dependencies that the disease has because there’s so much that we can do to to balance that for people and looking at lifestyle medicine and options.
And then it’s a really important, obviously, follow-up post-surgical if you’re in that situation. So there’s very much, and that’s why I love the Endometriosis Summit is because there’s such a team approach, which you don’t see often. You know, often it is very, MD-centric and without naming names of things that I’ve been involved in where it is not, there’s a lip service to team approach. It really seems like that exists more so because you’ve had such a hand in creating the Endometriosis Summit.
And I really appreciate that because it’s empowering for people that are listening to hear that surgeons and PTs, pelvic PTs are working together to optimize care for the first time.
34:11 Dr. Sallie Sarrel: Yeah, and the physiatrist, I think, they’re a pelvic pain and and to some extent, the orthopedist. I think, you know, that multidisciplinary approach, which should include anything from your excision surgeon, and their whole team. Which may include a urologist, which may include a general surgeon, to the pelvic therapist, because there are OTs now that do pelvic health PT. Or pelvic health therapy, also, if you need trauma counseling because to be sort of dumped on for years, oftentimes, we do need trauma counseling.
And also many choose to treat the nerves and treat the bladder. Physiatrists do great work there. And also to work some have some really decent nutritionists, because after the bowel endometriosis is removed, you still could have a lot of symptoms. And I think You know, what I find interesting as someone who runs the Endometriosis Summit is I have this dream and we should all be together and we are all together.
And we have panels that are entirely patients, right? Where we get to hear what it feels like to have endometriosis. But I had to open a third day where we talk about surgery for like six of the eight hours because I couldn’t get any funding. And that is a huge issue with endometriosis is that I didn’t want to take pharma funding, I didn’t want the pharma bias. And then if I wanted any other kind of surgical industry, they didn’t really care that the physical therapists and patients were in the room. So it’s, it’s, um, I think there are a lot of groups doing a lot of good work and funding becomes a huge issue. Yeah. Like anything else.
36:13 Dr. Ginger Garner: Yeah. Top to bottom from accessing the pelvic therapy that you may need to accessing the surgery that you may need to actually funding programs that will help advocate to change this so that there’s a standard of care instead of a lot of the misinformation that’s out there, right now. And definitely outdated practices for sure.
36:37 Dr. Sallie Sarrel: And there are definitely organizations that benefit from the misinformation, that financially benefit from maintaining the status quo because celebrities love to frequent some of these organizations. And I think it takes away from that patient that maybe just had an Instagram account, but they have really factual information out there. And it also takes money out of the pile that everybody could be using to really further care.
And I have I’ve worked in other diseases, I’ve done a lot of work with juvenile diabetes. I’ve done some work in breast cancer, but in terms of advocacy, I’ve never seen what goes on with endometriosis. Where A, there just isn’t enough funding to go around, and B, people will manipulate the system and they want only their organization to matter. Whereas with the summit, I want everybody’s organization to matter. And because we’ve given people a voice, it is a very challenging experience to fund.
37:54 Dr. Ginger Garner: Yeah, yeah. I think that’s, like critical behind the scenes information that underscores your passion and your work for what you do because it’s not just throwing it out there and having the summit or talking about this. There are so many political aspects of it, business aspects of it, that put hurdles in our way. That to also ignore the obvious and say that if you’re trying to do something that’s new and different and would really further a cause for women, you’re already fighting an uphill battle because we exist in that system that has historically been, you know, run by men, designed for men, funded by men.
38:42 Dr. Sallie Sarrel: I also think heaven forbid we ever say the word woman. But ultimately, the pile of funding comes from an office that’s designated for women. So it’s like you want to be inclusive. But if you’re too inclusive, you’re not considered for everything else. And I think then you’re here’s what really happens. You’re like listening, you’re like, I can’t believe she’s complaining about this. But it’s the patient that loses in the end, right? That’s what trickles down.
So I have gone out and spoken to reps about coming to the endometriosis summit, and not just one, their answer is, well, we don’t care if the patient’s there, because they’re not the one that’s buying the product. Or they’re not the one that’s running the OR. And here’s the thing, but they’re the reason why you’re there in the first place. So let’s not knock the patient because if we don’t do better for them, then you don’t need to be there ever.
And then, you know, if we are able to teach surgeons better techniques, then they can put the pressure on insurance companies with outcome, maybe with an outcome database, that would be amazing. And it would change for the patient. It’s not about that we can’t fund change, it’s that the patient loses because we can’t fund change.
40:13 Dr. Ginger Garner: Yeah, yeah, and the status quo continues. So speaking of that and busting myths and moving forward, what would you encourage people to do who think that they may have it? Because this whole season has been based on really busting myths about care and pelvic health because a lot of medical gaslighting happen in regard to pelvic health, maybe more than any other area of the body.
But so people who think they may have it and they may or may not have experienced gaslighting yet in the healthcare system, what would you encourage them to do or what questions to ask?
41:01 Dr. Sallie Sarrel: I think one of the most important things if you’re going down this road of endometriosis is to recognize that if you’re missing out on school or career or parenthood because of pain and pelvic pain and painful periods, then you could have endometriosis. And endometriosis itself can also be horrendous stomach issues. It can also be bladder issues. It can also be lung collapses, and it is a whole body disease. And so to make an itemized list of your symptoms, and sometimes that may or may not include drawing them on a human body, and showing them to the doctor, and if it adds up to you, then it adds up to you. Then that’s enough. And you need to hear that in your own head.
Because if they look at you and go, there’s no reason for that, or I’m just a gynecologist, go to this one or that, you have to vote with your feet until you find a specialist that cures you. So that’s why even though we charge for the conference, I do produce a lot of free content, from podcasts or this podcast or from podcasts to our YouTube so that people can go in armed with the knowledge that maybe nobody has said to them before.
I also want to say, while I work in the pain side of things, I don’t believe that infertility is unexplained. And if you’re truly listening to yourself or to the patient, that it’s probably endometriosis if you’re really hearing what goes on. And a lot of people with infertility think like, oh, they’re told like two, three, four miscarriages are normal. Miscarriages are not something that you just have to experience in life. They’re traumatizing and devastating. And you need to go to a specialist that hears you.
43:05 Dr. Ginger Garner: Yeah. To unpack a little bit of what you said there, because I think a lot of people don’t understand the symptomology and I’m going to step back and even rephrase my sentence there. because I think I can. We end up as we’re talking about this as practitioners get too jargony.
So, you know, what can people feel? What would you feel if it’s endometriosis? You said several things and we think about this every day because we talk about it with our patients every day. But if you’re listening to this and you think, well, my periods are okay. They’re not that painful, but wow, sometimes it’s hard to breathe. Or I’ve got a lot of GI pain. Or it seems like I’m bloated half the month. Or I’ve got this weird “nervy” pain that’s like around my sitting bone. Or it’s like running down into the pelvis or the leg. Or other issues that would seem like far removed.
I just want to encourage you that, you know, endometriosis is not just about the pelvis. It is stretched up and far and wide. Like you mentioned, Sally, it is, it is whole body. So it could be related to the respiratory diaphragm or the lungs. It could be into the tpelvic nerves and actually give you symptoms that go below the pelvis. It could be really centered around the bowel or in the GI or in the lymph nodes. There’s so many places that it could be.
And I say that because I’ve had too many patients walk in after being to multiple providers and their OBGYN would say to them, your digestion doesn’t have anything to do with your pelvic pain or vice versa. And so they go another two, three years without investigating it.
44:53 Dr. Sallie Sarrel: I think we, we all have met people or we, we have lived, you go to the gynecologist and the gynecologist tells you that you were fine. And then they come to you and you say, as a pelvic PT, well, you could have endometriosis. Oh, I went to my OBGYN and they said, it’s fine. And I get back to the societal problem that it’s, capital OB, little GYN and they’re trained for obstetrics and they’re not trained in the nuances of endometriosis.
And I think, you know, I tell the story back in the day, I had what was somewhat of an emergency. And I go to the local GYN because you’re not going to get any decent care in an emergency room for a multitude of reasons. And I literally had a lump that you could see in my abdomen. And she was like, “No, no, the ultrasound is fine. You’re fine.”
And I was like screaming through the ultrasound. And it turned out we didn’t know for another like, year and a half I had ruptured my tube. and that we, the swelling that we were seeing was from that but they were so busy to a GYN they’re looking at uterus and ovary and if there’s nothing on or in either of those then you could just go home. But endometriosis could be on the ligaments of the uterus, it could be in the tube, it could be surrounding the nerves of the pelvis, it could be on the ureters, it could be around the kidney, it could be on the…
And it becomes a very tricky thing and that is our hope, in training, bringing this course from Italy over to the United States to train gynecologists to look at their own scans, is that maybe we’ll be able to stop one more person from being told your imaging looks fine.
Yeah, so if you’re out there, and you’re listening to this, and your doctor said, Ah, your imaging is fine, that could be wrong. And also, if your doctor said, “No, no, you’re fine.” It’s not endo, you have to really ask them are, you know, don’t ask them, Are you sure? Ask yourself? Are you sure? Because your gut matters. And what you tell yourself really matters.
47:15 Dr. Ginger Garner: Yeah. Yes, so I think the mic drop moment here to takeaway, to remember, is that just because your GYN says you don’t have endo does not mean that is correct. And if you go into the ED because you’re in pain, there honestly is not much that they’re going to be able to do because no imaging is going to, and they’re not going to be trained in that to be able to identify that. So, while you may get pain management, that’s about as far as it’s going to go and you’ll have to stay with investigating it and trusting yourself.
47:53 Dr. Sallie Sarrel: I think these days people don’t even get pain management in the ER. They rule out the big situations, torsed ovary, ruptured appendix. By the way, you can have a very common is appendiceal endometriosis. And so like they rule out the big things, but they don’t really are, that’s not their job. Their job is to sort of rule out the things that are going to kill you. And although you feel like you’re dying from the pain, they’re not going to be able to provide you a whole lot of help.
48:25 Dr. Ginger Garner: Yeah. So I just, it’s not meant to be a discouragement when we’re saying this. It’s meant to just, it’s a yellow flag because knowing that you might wake up in the middle of the night in severe pain, that’s pretty much what you’re going to get. And we can fault the system, but at the same time, there’s no way that they’re going to be trained to actually identify that. And right now, they’re unable to.
So I want to make sure that listeners, as listeners, you have access to resources that can help you continue that investigation until you actually get the answers that you absolutely deserve and the care that you absolutely deserve. So, Sallie, share where people can get in touch with you. Where they can find you on Instagram. I love what you’re doing on Instagram. Your website, and of course, Endometriosis Summit information.
49:22 Dr. Sallie Sarrel: So if you’re, the fastest way to get me typically is through Instagram and that’s at Endometriosis Summit, one word. You can get me at drsalliept, D-R-S-A-L-L-I-E-P-T, as well. You can head to our website, theendometriosissummit.com. You can head to our YouTube, and I think that that’s a great place to head to because we have tons and tons of free videos. And you can head to the Endometriosis Summit, and I think when you talk about resources for understanding who’s around and who’s available in your neighborhood, we have probably 56 of the best surgeons in the United States and world there, as well as physical therapists and patients and advocates. And it’s a great place to connect and learn from others.
50:23 Dr. Ginger Garner: yeah, I was, I wasn’t able to be there in person last year, but I watched it virtually and, um, it was just so beneficial. So if you’re listening and you have it, or you love someone who has it, or you’re listening and you’re a PT or OT and pelvic health or other, other provider, please consider attending. Because it’s in doing that, our collective voices can be stronger together and then we can advocate for easier access to the gold standard care.
50:52 Dr. Sallie Sarrel: Yeah, our PTs and OTs are gonna love it, because we’re offering a two-hour lab in groin ecology, which is how all the extrinsic things of the hip, vulvar, pubis, and spine affect the intrinsic issues affecting those with endometriosis. So it’s a really good lab. And I also think you don’t oftentimes get to go somewhere where you feel like everybody in the room just gets it. And that’s the value of the endometriosis summit.
51:25 Dr. Ginger Garner: Hugely validating, hugely validating in a world right now that we don’t feel that and see that. So one question I was going to follow up with, just to finish up with actually, I’ve got a couple of questions left. One is how you’re doing now? I saw in your bio that in your spare time, because, you know, you got a lot of that when you’re not doing all things endo. You’re on the tennis court playing pickleball or playing with your, you know, poodles, that kind of thing. So, how are you now, you know, day to day? What are the things you love to do that you’ve gotten back to doing?
52:04 Dr. Sallie Sarrel: I think understanding that a huge component of my pelvic pain came not from endometriosis, which I didn’t have to keep chasing surgically, but came from a hernia really changed my ability to function recreationally as well as in society. So, and I’ve talked a lot about that. You can find that everywhere, but I do, you know, I will go through a flare. I want to say two or three times a year. I also have POTS and Hashimoto’s and all these other exciting things that affect me. And I’m just like all of you. I go through a flare. One happened while I was away on vacation. And I think, like, this is it. This is how I’m going to end up with that 10th surgery.
And I know that catastrophizing is wrong. And I know, like, I should. And then, you know, slowly, I do all the good things. I have this routine on my sacrum that I need to do. And I have you know, I happen to have very bad colitis, I have to watch what I eat. And then I go back to all those things. And, and slowly, I see the light. And I think I wish I hadn’t just made an assumption that this is a that I’m going to end up with more surgery. But that’s what my life was for 10 years.
So I forgot that my life for the past, like two or three years has been I played tennis four or five, sometimes seven days a week, I played pickleball, I you know, have a puppy and I, you know, you have to be okay when it feels good too.
53:45 Dr. Ginger Garner: Yeah, absolutely. And I think that speaks to largely of where integrative therapies, where lifestyle medicine and the evidence base of, you know, mitigating and managing hormonal balance and inflammation and optimizing sleep and all the things that I know I’m talking about to my patients every day really come into play.
Plus being very psychologically informed about what we do because this is traumatic and a lot of times the trauma that you’ve experienced with endometriosis could have happened in the system. The very place where you should be finding sanctuary you experience that trauma. So lots of things that pelvic PT can really do from, again, from integrative to lifestyle medicine to psychologically informed, compassionate care. Yeah. And we can all use those reminders, even being pelvic PT.
54:43 Dr. Sallie Sarrel: So I mean, lots and lots of things. And it’s a long, long journey. That doesn’t end with menopause, that continues throughout the lifestyle.
54:55 Dr. Ginger Garner: Yeah. That’s a really good factoid to finish with too. That’s a myth to bust is that it’s somehow going to stop with menopause, which is just not true. Not true. So we need care all the way, all the way through, compassionate care. And practitioners who are going to, and speaking to all of you listening, your practitioner should be very much grounded in helping you trust yourself and the symptoms that you’re feeling.
55:30 Dr. Sallie Sarrel: Yes. Excellent.
55:33 Dr. Ginger Garner: Yeah. All right, so a fun question. And you can go, this is kind of a rapid fire finish. Either, what book are you reading right now? Cause I love to add new books to the list and to share them with other people. Or is there like a new album artist song that you’re listening to that’s just really, you know, doing it for you?
55:53 Dr. Sallie Sarrel: Actually, currently I never, I’m not a reader. I’m a podcast listener. But I’m actually currently reading a book called She Lived and it’s a story of escape from Auschwitz. And I think, um, very important to remember our past as people who are Jewish. So that’s my book, not very uplifting. My podcast that I listen to every week is called the Main Street Dish. And it’s about food at Disney because that’s a nice relief from stress. Yeah.
56:32 Dr. Ginger Garner: Yeah. Well, thank you. Thank you for sharing. Um, now I’ve got another book and another podcast to add to the list and, um, all you guys, you could, you can add that too. Thank you very much. Dr. Sally.
56:48 Dr. Sallie Sarrel: Wonderful to be here. I hope to see you in person in March.
56:53Dr. Ginger Garner: Oh, I hope so too. I’ve got to get that onto my calendar.
56:56 Dr. Sallie Sarrel: All right. Take care. All right.
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