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Medical gaslighting and gender bias in the healthcare system is a pervasive issue that affects the lives of many individuals, particularly women. This bias is rooted in societal constructs that undermine women’s credibility and agency when it comes to their own bodies and health. In this podcast interview, Shannon Cohn, the filmmaker behind the documentary “Below the Belt,” discusses how these problems manifest in the healthcare system and its impact on women’s experiences with endometriosis.
The interview sheds light on the historical undervaluation and dismissal of women’s health conditions. For example, women were not required to be part of research studies until 1993, highlighting the long-standing neglect of women’s health in medical research. This lack of representation and research has led to severe misunderstanding of specific women’s health diseases and conditions, like endometriosis.
The consequences of the limited research and undervaluation are far-reaching and detrimental. As a result, women regularly face challenges in getting their symptoms recognized and receiving appropriate care. Medical gaslighting, where healthcare professionals dismiss or invalidate women’s experiences, further compounds the issue. This not only undermines women’s trust in the healthcare system but also perpetuates the notion that their health concerns are not valid.
The first step in combating gender bias and medical gaslighting in healthcare is increasing awareness. Recognizing the existence of bias and its impact on women’s health is crucial in effecting change. Cohn emphasizes the importance of being aware of this bias and finding ways to push past it. Women must insist that their symptoms are listened to and taken seriously, even if it requires employing diplomatic strategies to navigate the healthcare system effectively.
We are so grateful to Shannon Cohn and the rest of the team for creating this documentary. “Below the Belt” plays a significant and vital role in raising awareness about endometriosis and the abysmal care women are receiving. By sharing personal stories and experiences, the film sheds light on the challenges faced by individuals with endometriosis and the need for greater understanding and support. Cohn’s work highlights the importance of empowering individuals to advocate for their needs and contribute to policy change and research funding.
Shannon Cohn is a filmmaker, lawyer and social impact producer who has worked across Africa, Europe, the Middle East & the Americas on topics related to gender equity and combating stigma and taboo. Her films and TV series have aired on PBS, Nat Geo, Discovery Channel, Amazon and Netflix.
Her new PBS documentary BELOW THE BELT, executive produced by Hillary Clinton and Rosario Dawson, approadches endometriosis as a social justice issue. The film is one element of a larger social impact plan to create meaningful change in endometriosis and women’s health including increased research funding, policy changes, medical education initiatives and wiespread awareness.
Her previous film ENDO WHAT? was called “the first step in a plan for change” by NEWSWEEK and “film of the year” by THE GUARDIAN. Before becoming a filmmaker, Shannon practiced international law and was part of the legal team that prosecuted Enron. She has endometriosis and has two young daughters who have a 7x increased risk of having the disease.
00:00 Dr. Ginger Garner Hello and welcome, everyone. I have a very special guest with us today, Shannon Cohn, who is a filmmaker, attorney, and social impact producer. I want to have just a full stop moment for a minute because her new PBS documentary, Below the Belt, is amazing. I just brought the film for a screening to our little hometown in the Greensboro, Chapel Hill, Durham area last year, and I just sat and cried through most of it. It hits home for both of us, and we’ll kind of go into our stories, balance that out with a few statistics because we want you guys to be informed.
But before I do that, I want to welcome Shannon to the podcast and also give you just a little bit more information about how awesome she is. So one moment, please. Shannon is a filmmaker, lawyer, and social impact producer.
She’s worked across multiple continents. Her film and TV series, which are based on gender equity and combating stigma and taboo, have aired on PBS, Discovery Channel, Amazon, Netflix, and National Geographic.
Her new film, Below the Belt, is executive produced by Hillary Clinton and Rosario Dawson, and it’s all about endometriosis as a social justice issue. We’ll get into that in just a moment. But it’s part of a larger plan to create meaningful change in endometriosis, in women’s health, including research funding, policy change. You guys know that you hear me kind of harp on that all the time. It comes down to policy change quite often. And then medical education initiatives and widespread awareness.
The film has been described by Newsweek as “The first step in a plan for change.” By The Guardian as, “Film of the year.” And before Shannon was a filmmaker, she was a lawyer, and was part of the legal team that prosecuted Enron. Shannon has endometriosis. And in advance, just thank you for sharing that piece of information. And she also has two young daughters that have a seven times increased chance of having the disease.
Welcome, Shannon.
02:36 Shannon Cohn: Thank you. It’s an honor to be here.
02:38 Dr. Ginger Garner: Thank you so much for taking the time to be with me today and talk about this. And all the links that we’ll mention you guys will put in the show notes. So don’t worry about that. My first question is, you know, I want to hear your story. What caused this shift from attorney into filmmaking and what got you fired up about this topic?
03:03 Shannon Cohn Yeah, so and I hope that our connection is good, if not, just let me know and I can repeat anything. So this film comes from a very personal place. As you say, I have endometriosis, and I have two young daughters who have a seven times increased risk. And the film came from a place where I wanted them to have a different future than what, you know, the path I had walked, which included, you know, many years of not having answers of being, you know, really dismissed in different specialists offices and, you know, primary care providers offices who couldn’t give me an answer to why I had these symptoms.
And in multiple tests, surgeries, medications, chasing symptoms, basically. And not to mention multiple miscarriages and fertility issues. And the thought that millions of other people actually go through, you know, that same journey. My journey is not unique or special in any way, it is something that is too often repeated, you know, around the planet. And the issue with all of that is that all of the suffering, all of the expense, all of the, you know, personal and professional relationships that are affected, are needlessly, you know, suffering.
And if people just were better informed about the condition, that healthcare providers are better equipped to recognize symptoms quickly. And that people who have endometriosis are empowered to say, you know, something is wrong, and we need to find an answer.
And then beyond that, you know, an understanding of how to approach the disease once you’re diagnosed, and how to find treatments that work for the individual. And we can get into that. But, you know, endometriosis manifests differently in different people. And because of that, from what we know, you know, what works for one person to make, you know, someone feel better, does not work for another.
This is a very individual disease, which is, you know, confounding and frustrating, because, you know, you can’t just find what it is easily, you know, like you have a bacterial infection, and oh, that’s what it is, it shows up quickly in a blood, you know, blood test. Oh, let’s take an antibiotic. And then a few days later, you feel better. It’s definitely not the case with this condition. But, I mean, hopefully one day we’ll be there, but not without a lot of work before then.
06:04 Dr. Ginger Garner Right. And that’s why I am just over the moon to have you on the podcast today to talk about that, because this film is seismic to me as a practitioner, personally, with a long history of endometriosis in the family and, you know, in my own struggles. Yeah, it feels nothing short of seismic, and I hope that, I mean, it already is making a big difference, but I hope that it is the start of something that can just be kind of a snowball effect to create awareness.
One thing that I’m really curious about, because obviously you’re kind of, you’re a powerhouse for change. What did you do? Like, what was the first step when you thought, I have this, this is my experience? There’s a pause there between this is my experience, and now I’m going to do this giant amazing thing. What’s the timeline in between, you know, that those two moments?
07:24 Shannon Cohn I mean, I first had symptoms of endo at 16. I didn’t hear the word until I was 29. And then I believe I started making the film Endo What, which is the educational film we made just before Below the Belt. We started filming that in 2012, so a few years after that. So just a couple. But, and then basically a decade of making these two films, Endo What and Below the Belt. And not just making the films, but building the social impact, the social movements, the social impact campaigns around them that aren’t just about a film.
You know, I say the films are part of a toolbox, you know, tools in a toolbox, and working with a lot of very talented, very smart people to put together a coalition, you know, to push for change in a meaningful way. So yes, I mean, a multi year journey, multifaceted, of which many collaborators, played a part. And yeah, I mean, we’re getting there, you know, it’s so complicated. But, you know, that’s the power of storytelling and the power of film. It can break down, you know, open doors and break down barriers where other, you know, methods cannot.
08:29 Dr. Ginger Garner Just to share a short snippet of my personal experience in bringing the film to our area, we were able to, on Franklin Street in Chapel Hill, which, if you follow UNC Basketball or anything, you might occasionally see the enthusiasm for when we win games on Franklin Street. But on Franklin Street, there’s a little theater called Varsity Theater, and that’s where we hosted the screening of the film. And I’m just so thankful for it because we got, we filled the theater, A, we filled the theater. B, we filled it with people who may have not shown up for just a random conversation, you know, somewhere, because there’s also a lot of stigma associated with pelvic pain and the way women experience it.
And that night we had parents coming out, we had spouses coming out of, you know, women suffering and people suffering with this. And then we ran a little local panel with, you know, our local experts here just talking about the things that we can do. And it did move the needle. And this is just a small example, right? It’s just one example in a small town of what we did, and it’s happening everywhere, which is what is so amazing. But I’m sure that it wasn’t without some difficulties.
And so one of my questions, one of my many questions for you is, in making a film like this, and having a conversation that has been historically taboo, you can’t talk about all the great things that are happening without talking about gender bias and some patriarchy and how our system is built and what it’s done historically, because that’s the thing that we’re trying to change. Like we can’t just sweep that part under the rug. So I’m sure you can expand on that. But I know what my experience is as a healthcare provider. But if we could just talk about gender bias alone, you know, in healthcare for just a second.
11:44 Shannon Cohn Yeah. Well, I’m trying to think of like, through what lens should I approach this? I mean, honestly it’s, I think the first thing we have to recognize is that we live in a world that is built by men. And that’s the way it is. That’s the way it’s always been. And for the foreseeable future, it is evolving. That is how it will continue to be.
So we have to recognize that and find a way to operate within that paradigm to challenge, of course, that paradigm. But I think first we have to recognize it in order to intelligently and in a nuanced way challenge it, you know? So gender bias is a result of that construct, you know, especially in the medical setting, where women, and I’m going to speak as women, you know, because endometriosis disproportionately affects people who identify as women, but we also know it affects gender expansive individuals as well. But I’m so sorry, my dog is coming to help. Deciding she wants to say hello, and she’s pushed to the laptop.
12:00 Dr. Ginger Garner Sometimes mine comes in, I have a black lab.
12:23 Shannon Cohn She’s just like, Hey, hey, you’re talking to someone, you need to talk to me. Anyway, so basically, gender bias is a result of that construct in which we live, where women often are taught to be unreliable witnesses to our own bodies. And that, you know, we have to be aware of that and challenge it.
And in the film, you’ll see Jenna, who was a character or subject in the film. She is a registered nurse, incredibly intelligent, articulate, but she realized as a person of color, that when she went to the ER and explained her symptoms, she was taken more seriously, and this happened more than once, when she would take her partner who happened to be male. A white male who was actually. He’s actually a software engineer. So it doesn’t even work in the medical field, she’s a registered nurse.
But she recognized that she was taken more seriously when he was in the room. And so, and often, she would even let him speak for her. As a strategy, not because he was better situated, but she just wanted someone to take her seriously. So what does that say about the world we live in? You know, when a very capable woman who works in the healthcare industry defers to a male partner.
So I think that, you know, it was really important to me to include that in the film, because I think it speaks volumes of, you know, the situation and the landscape we find ourselves in. [Yes.]
And as we know, historically, you know, women’s health conditions have been undervalued, under researched, you know, largely dismissed and in research. You know, first, women weren’t actually required to be part of research studies from the NIH until 1993, you know.
14:00 Dr. Ginger Garner That deserves like a huge pause. Most women, when they come into my office, for example, and we get into a little bit of that, like, why haven’t I gotten help before now? Why, why has it taken me this long to get this help? And I talk about things like that. They’re usually, their eyes get bigger. Like, really? I just thought women’s health issues were always researched.
And then there’s just a big pause and a big silent no, you know, for me, because that is the case. We weren’t included in research. It had to be mandated that we are included in research. And we’re still not being, or the issues are still not being well researched. One of the things that you said about being, we’re being conditioned, we have been conditioned to be unreliable witnesses to our own body and health.
I’d seen that in an interview that you had given before. And that phrase is so important because so many women come in and sit down and they’re not even sure about their own story and experience because they’ve frankly been gaslit in the healthcare system, which means hey’ve been traumatized inside the healthcare system that they’re supposed to be able to find safe sanctuary.
15:08 Shannon Cohn It’s true. And so the first step, you know, to combating that is to be aware of it and find a way to push past it, you know, and really insist, you know, in a healthcare setting that your symptoms are listened to and taken seriously in a diplomatic way.
I mean, even me, like I was in my GI doctor’s office recently and he was just like, oh, I just can’t find the answer, you know. I was like, listen, we both agree that something is going on and we both want to find the answer. We just haven’t found it yet. So let’s keep looking. But I remember thinking, okay, stay calm. Don’t get excitable. Like speak to him like this, like we’re partners.
So I was using my best diplomatic, you know, skills, but this was just a few weeks ago, you know, and I still like, even as someone aware of this, you know, and taught and speaks about it, it is difficult in the moment, you know.
16:17 Dr. Ginger Garner That’s also worth a pause because even though it’s, you know, it’s a funny story as you tell it, it’s actually very sobering and even, you know, and angering on certain levels because that’s what we have to do. We have to think extra hard about what we’re going to say and how we’re going to present it in order to have it be accepted or said in an acceptable way. So that it’s not, you know, it’s not that you’re necessarily massaging an ego, but that’s oftentimes what women end up having to do is like work around the ego in the room to make sure that their lives are actually going to be attended to and their health is going to be valued, you know, they’re going to be taking care of.
17:00 Shannon Cohn Right. There’s just that knowledge and that awareness and like Jenna did, you know, by inviting her partner. It’s kind of like, okay, we can, we can outsmart the system. It’s fine. I mean, yes, it’s unfortunate that this is the situation, but at the same time, we also are used to like being practical and say, let’s get this done. Like, let’s solve this problem in the short term and the long term.
So yeah, I mean, and I, as, as you know, and seeing the film, when people ask me about what the film is about, I don’t say necessarily, oh, it’s a documentary about endometriosis. I say it’s a film about health equity and it looks at taboos and stigma. It looks at gender bias and medicine, racial bias and medicine, institutional and financial barriers to care.
What does it mean when there is a health system that is not built for the patient in this situation? What does it mean when a patient is relegated to subpar treatment because of financial abilities? You know, to pay for vacations or for surgeries? Or informational systems, you know, where there’s misinformation or there’s disinformation, or you don’t have access to the right information. I mean, it’s about all of those things, but it’s told through the lens of a condition that affects, you know, 200 million people on the planet and a condition that, you know, that I happen to have.
So, I mean, we look at all of these larger expansive topics, and I think that’s why the film works on a broader level is because no matter who you are, you’re dealing with all of those things. It doesn’t, you are, we are all dealing with financial barriers to care, especially in the US but in really most countries where no matter your, you know, your age, your sex, your race, you know, your socioeconomic status, you have barriers to the best healthcare, you know, and that’s why it was important to me to include different people from like different socioeconomic statuses, for example, who maybe there’s somebody very wealthy, you know, but at the same time, they still have barriers to information, to getting the information.
19:14 Dr. Ginger Garner So very true. And I really appreciated that in the film, because it is such a broad topic that impacts everyone. You don’t have to, you don’t have to be personally touched by endometriosis to come away from that film and realize we have a long way to go to create the equity that we want for women and people who identify as women in healthcare, period.
It’s just such a massive plus that you’ve also tackled endometriosis, you know, in the, in the topic of the film, because it is such a huge problem. One of the things that I wanted to spend just a couple of minutes on for the listener is kind of myth busting with endometriosis. Because there are so many, there’s so much misinformation out there. And if that can help clear up some things for women and those who are listening, that would be great. So I know you probably have a couple of favorite myths that you like to bust. I have a few faves. So what are your top ones that have been super helpful for you?
20:38 Shannon Cohn Well, I was in fact told that pregnancy would cure endometriosis by a healthcare provider, a well renowned Manhattan based OB GYN. He said, “Oh, well, when you get pregnant, all of that will go away.” Thinking, are you serious? I can’t believe he just said that I already knew it was wrong. But I was really, you? Who’s at the most prestigious hospital in Manhattan is telling me that I couldn’t believe it. So pregnancy is actually not a cure for endometriosis. That’s an outdated myth.
Another myth. I mean, likewise, hysterectomy does not cure endometriosis. So a lot of people, and even for example, ACOG guidelines, ACOG is the professional association of the vast majority of OB GYNs in the country. The guidelines still say that hysterectomy is the definitive treatment for endometriosis, which is outrageous.
21:13 Dr. Ginger Garner It is pretty insane. And that brings up another important myth. Just go ahead and bust. And that’s people assume that OB GYNs are trained and experts in treating endometriosis.
21:27 Shannon Cohn Yes. I mean, it is true, which is, I understand. Hey, if I’m not familiar with this condition, I would assume like a lot of conditions, you kind of assume that that kind of specialist, you know, that part of the body, like they should know, right? Well, that is not the case, because again, endometriosis has been undervalued, under researched, under emphasized in medical school. I mean, most doctors spend less than an hour on endometriosis, you know, in medical school.
And OB GYNs, you know, the vast majority of them, and I think they will admit, you know, they just do not have the specialized training and skill set to do advanced gynecological surgery, for example, or, you know, they’re just, their focus is so broad, and they’re doing a great job on a lot of things like delivering babies, for example, you know, clinical care, all of the things that we need, you know, I see an OB GYN, and she’s wonderful.
And she has a really great skill set. But she would be the first to say, if you need specialized surgery, you need a referral. And I think that we can all – a referral to a specialist. But I think we can like the analogy is if you have, you know, if you have good, you know, cancer, for example, and you need surgery, do you want someone who doesn’t really do that surgery very often? Doesn’t really have that skill set? Or would you want that referral to, you know, an oncologist who has specialized surgical training to, you know, remove that?
I think we need that same pipeline of referrals for people who are indicated, you know, that need surgery. Instead of just trying to treat it in a clinical setting when that’s tried and it doesn’t work, you know, then we need those referrals to people who treat endometriosis every day.
23:27 Dr. Ginger Garner Yeah. So our take home message really is, you know, there are some OB-GYNs who are specially trained in endometriosis, and you have to ask, you’re not going to walk into any OB-GYN office and find that in general, they have training or really any training at all in endometriosis. And ones that are, you know, upfront with you will definitely talk to you about that limitation because they have so many other valid things and diagnoses that they must cover.
An OB GYN in many ways is a generalist for that entire area instead of a specialist. And a lot of people think of them as a specialist because we’re so siloed in the United States and our specialties, which is both good and bad. It just sometimes means that some specialists don’t end up talking to others, and then you end up getting limited treatment. And endometriosis is one of those where there are still some myths circulating. The ones you had mentioned about hysterectomy as a treatment, it is not, you know, the gold standard is also not, for those of you familiar with surgical approaches, is not ablation, it’s excision. And a lot of people need to learn about that because there is no diagnostic test other than surgery that can definitively tell you whether or not you have endometriosis.
24:55 Shannon Cohn Yeah, not yet. I mean, I hope that if we get increased research funding and in a huge scale that one day soon we can have this non-invasive diagnostics. But right now, I think it’s important to say that surgery and, you know, taking the sample of biopsy, you know, to pathology and confirming endometriosis is the only way to definitively diagnose it.
So a lot of times, people say, oh, well, my MRI was negative or my ultrasound was negative. That doesn’t mean that you don’t have endometriosis. My MRI was negative and I had surgery shortly after and I had stage four endometriosis.
So, you know, the only way that a lot of times that those imaging will show up is if you have a large endometrioma on your ovary or large, you know, really large lesions. But if you have, you know, more diffuse lesions throughout your body, it may not show up on imaging. So just because your imaging looks quote/unquote normal doesn’t mean you don’t have endometriosis.
25:58 Dr. Ginger Garner Yeah. So two points there. If someone ends up in the ER and the ED, if you end up in the ED with pain, and that’s often what happens. You can’t handle the pain anymore. You’ve been ignored, your concerns kind of marginalized or, and then you end up in the ED because you don’t know what else to do. There’s not a diagnostic test unless it is large and still that’s not, not kind of commonplace.
There’s not a diagnostic test they’re going to be able to do in the ED to tell you absolutely anything. So you’ll get patted on the shoulder at best and sent home with pain meds, but it’s not a treatment, which means the next step is to find the practitioners that you need. Fortunately, there are a few websites that can point us in that direction.
We’ll include those in the show notes for you. But the other point to make about, you know, the pain part of that and the identification of it in surgery being the gold standard for diagnosis is a lot of even well-meaning practitioners still think that it’s just period pain or it’s just lower abdominal pain or I even had an OB-GYN say, well, your gut health and function has nothing to do with reproductive functioning and then one is not going to impact the other.
Yeah, yeah, it’s also not true. So it’s not limited to lower abdominal pain. Endometriosis can be in lymph nodes and tissue. It can be in the respiratory diaphragm. It can be in the lungs. It can be in the nerves, in the pelvic nerves, the sacral plexus. It can be in a number of places, which means widespread pain that’s not limited to that pelvic region.
Any other myths out there that we should bust before we go? Those are a lot, several of them.
27:50 Shannon Cohn Pain is not normal. [That’s true.] That’s what I was as a teenager, just told that my symptoms were normal, part of being a woman. I needed to suck it up, all of those things I was told. And I remember being very confused by that because I, it just, I couldn’t fathom the fact that it would be normal. So yes, some people have a bit of cramps and, but if, if your pain is so intense that it stops your daily activities, then that’s not normal. If you’re popping, ibuprofen and going through, supporting Advil and other types of manufacturers trying to get through pain, that’s not normal. So you really need to see a specialist on endometriosis. Or a pelvic health specialist, because some things, something’s not quite right.
28:45 Dr. Ginger Garner Yeah. And there’s a lot that can be done conservatively, which is super important. That’s where I end up focusing my time is either pre or post-op helping women manage things because endometriosis is dependent on estrogen, very estrogen driven. And so there are a lot of environmental influences where you may be getting what we call endocrine disruptors or, you know, estrogen dysregulators that are artificially regulating in a way that we don’t want estrogen, which can actually make symptoms quite worse or create more growth when we don’t.
So there’s a lot of things that can be done conservatively, which is good because while surgery is very important and absolutely the gold standard, excision surgery, there’s still a lot of things that can be done to improve your quality of life, help you get back to what you want to do and really thrive in terms of pelvic health. So good news there too.
29:45 Shannon Cohn: Yes.
29:48 Dr. Ginger Garner: I know we could talk about this for a long time. One of the things that I wanted to mention, if you’re a listener is if you are interested in what you can do to increase awareness and support, there is a bill in Congress that our Academy of Pelvic Health on a task force that I was privileged enough to be a member of that we helped co-write a bill for the House of Representatives in Congress a couple of years ago. It’s HR 2480.
And if you’re interested, all you have to do is reach out and email your Congress member and say, Hey, consider co-sponsoring this legislation because in doing that, it will increase awareness for pelvic health and increase the chances that women will be properly screened for this and other issues like just prenatal and postpartum because we don’t have any standards of care in the U.S., which is also worth a big pause.
But anything that we can do to increase awareness and get women to the right place to get help would be wonderful. So we’ll drop that into the show notes as well.
And all right, a couple of last kind of rapid fire questions for you.
One, what’s something that you would like to see to change for the future in terms of based on what we’ve been talking about with endometriosis care? What’s one thing that you would like to see change?
31:23 Shannon Cohn I would like for women to girls and women to be believed when they go into a doctor’s office and share symptoms.
31:33 Dr. Ginger Garner Yeah, absolutely. And it would be wonderful too, if we could get like a public health based class where everyone graduated from high school understanding how their body worked and you know, that period pain is not normal. That would be wonderful. All right, last question. What book are you reading right now?
31:50 Shannon Cohn Let’s see. Well, I have actually a stack of books on my nightstand at the moment. And depending on what mood I’m in is the one I pick up. I am reading The Body Keeps the Score, which I think is really interesting. Because I do think there’s a lot of trauma, you know, in all of our lives that manifests physically. So I’m interested in that.
And I’m also reading for this is my fun book is The Wager by David Graham. He wrote Flowers of the Killer Moon. And it’s very interesting. He writes kind of narrative nonfiction. It’s really good. That’s my beach read. That’s my fun one. I want to just really go into a different place.
32:36 Dr. Ginger Garner Thank you. I am like you. It depends on what I want. I’ll pick from my stack on my nightstand too. Thank you, Shannon, so much for spending this time with me today. Thank you for the advocacy work that you’re doing and continue to do. And I think that it’s very hopeful situation that we have for the future. Thanks to your work and everyone on the team, because I know that took a big village to make this happen. So thank you so much.
33:02 Shannon Cohn Thank you. It’s been an honor.
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