Transcript: EP 325 – The Future of Femtech and its Impact on Women’s Health with Carol Johnson
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Carol: Just understanding that having had fibroids undiagnosed for over two decades, getting to that realization after menopause and thinking, oh my gosh, I’m beyond menopause, and I still don’t understand all of the aspects of the uterus was really eye-opening to me.
Dr. Taz: Hi everyone, and welcome to Super Woman Wellness. I’m Dr. Taz. I’ve made it my mission throughout my career in integrative medicine to support women in restoring their health using a blend of Eastern medical wisdom with modern science. In this show, I will guide you through different practices to find your power type and fully embody the healthiest and most passionate version of you. I’m here for you and I can’t wait to get started. This is a Soul Fire Production.
Welcome back everyone. Welcome back to another episode of Super Woman Wellness, where we’re determined to bring you back to your Super-powered self. And a part of that is around hormone balance and hormone health and the female reproductive system, which again, over and over in practice gets dismissed. And my poor patients are desperate for answers. Well, we have someone who is trying to innovate the space and do things a little differently. To help us all, I want you guys to meet Carol Johnson. She’s the founder and CEO of Uterine Kind, which is an app designed to help those dealing with uterine conditions connect the dots, very important, on their symptoms, accelerating the time to diagnoses.
She’s the company behind Uterine Kind, which helps patients monitor and measure their symptom experiences and helps with treatment and diagnosis of debilitating chronic conditions like endometriosis and fibroids. Guys, endometriosis is so under-diagnosed, I can’t tell you how many women suffer for years and really walk around with that diagnosis. With 10 plus years in consumer health marketing as an agency founder, a strategist, writer, and user experience designer, and a personal history of living with undiagnosed fibroids that impacted fertility. Carol is passionate about helping people become citizen scientists of their own bodies so they can confidently participate in shared decision making. Welcome to the show, Carol.
Carol: Thank you so much, Dr. Taz. It’s an honor to be here.
Dr. Taz: Well, you and I are very like-minded in the sense that I believe that every woman has to master their own chemistry. They really have to master what’s happening with their bodies to be able to have that conversation in a medical system that may not necessarily be thinking that way. Right?
Dr. Taz: And absolutely this is something that I see over and over again in practice, but I want to talk about what your perspective is of the field. You walked around with fibroids that impacted your fertility. Talk a little bit about your journey, and then we want to learn more about what Uterine kind can do to kind of narrow that gap.
Carol: Sure. Well, I would, thanks again for having me here.
Dr. Taz: Yes, of course.
Carol: And one of the quotes from our senior medical advisor, Dr. Evelyn Mitchell, who’s a assistant professor of Obstetrics and Gynecology at the Keck School of Medicine. One of the quotes that she sent that comes to mind often for me is that 90% of a patient’s diagnosis comes from their symptoms story.
And in order to effectively tell that story, so many things need to line up. We need to understand our symptoms, as you said, we need to be able to connect the dots on them, and we need to be able to articulate that story to our care teams in six minutes. That’s putting a lot of responsibility on both the patient as well as the care teams because they need that data and that story in order to effectively get to a definitive diagnosis. And what I’m seeing today and what I’ve seen over the past several years is a lot of people in limbo without a definitive diagnosis and thinking perhaps they’re just unlucky or their mom had bad periods. So they do, in the case of endometriosis, thinking it’s a bad period when it’s in fact a full body systemic inflammatory disease. So we need to provide support to both the patients as well as the care teams to improve that experience of telling that symptom story.
Dr. Taz: And what has been the gap? Is it that women … Well, we know what the medical gap is, right? We know what that experience is in the exam room where there’s just not the conversation or the awareness or even sometimes honestly, the dismissal of many of the symptoms. So we know that that’s an issue. But what is the gap for a woman? What is the gap for them in understanding what’s happening with their bodies, what their hormones are or are not doing, what symptoms they need to be looking for? What’s happening out there with women in general?
Carol: Well, it’s an interesting question because I just recently did a TikTok on abnormal uterine bleeding, and I was blown away by the responses. So over 12,000 people have commented. And the essential tidbit in the TikTok was that the CDC indicates that a normal period includes about two to three tablespoons of menstrual effluent or the fluid and tissue that is shed during the menstrual cycle. And of course, 99% of the comments are people saying, “That’s a sneeze for me, that happens when I stand up.” And what I realized reading through those comments was that they’re saying the CDC is wrong rather than making the connection to the fact that their periods are abnormal, that they are experiencing abnormal uterine bleeding, which affects one in three people who menstruate. And nobody’s picking up on that, not the clinicians, not the care teams and not the patients.
And while we can say it’s just a period, I think many people have experienced a significant decline in their quality of life as a direct result of their symptoms, which can be debilitating. And then even more concerning is that there are undiagnosed chronic conditions progressing, and this is a symptom. Heavy bleeding.
Dr. Taz: Yeah, heavy bleeding, I feel like it’s almost on the rise. I feel like everyone from teenagers … I feel like it’s one of two things. Either you’re heavily bleeding or you’re not bleeding. I feel like it’s like women are ricocheting between the two extremes. And I think that they both are problematic and I feel like they are on the rise. Heavy bleeding, I mean we could talk about it all day long, but is a sign and symptom of estrogen dominance where your body’s not breaking estrogen down very well, and estrogen dominance is linked to the liver. So there’s again, that connection to overall health and toxicity and inflammation and all these other ideas.
But I think what I really want to do, and I think what you want to do too, is get women out of the mindset that your period lives in some little box away from the rest of your body that you go once a month to take out and deal with, where in essence, your period in Chinese medicine and Ayurvedic medicine was a vital sign. It was a way of measuring your chi and your vitality and the amount of blood and the color of the blood, and all of these things really, really mattered and were signs and symbols of your uterine health. So I’m with you where there’s just this gap in understanding what your period really is. Now, what did you set out to do? What are you hoping with an app like Uterine Kind, right, we talked about in the beginning of the program, how can that help women maybe reconnect back to their uterus, to their womb, to the very source of their power? How can it help them reconnect back there?
Carol: Sure. And that is an important connection to make throughout my time, creating content for patients and physicians around gynecologic health, reproductive health, the endocrine system, it shocked me to discover just exactly how small the uterus is, the fact that it’s a muscle. It’s not this balloon that numerous fibroids can comfortably fit in, and that it is also connected to our brain, to our endocrine system. It’s not a disposable organ, in essence. It is part of our overall system. And so just understanding that having had fibroids undiagnosed for over two decades, getting to that realization after menopause and thinking, “Oh my gosh, I’m beyond menopause and I still don’t understand all of the aspects of the uterus,” was really eye-opening to me.
One of the things that was shared with me by Dr. Jennifer Garrison, who’s the founder of the Global Consortium of Reproductive Longevity and Equality, she’s studying menopause and the uterus and the uterus brain connection, and why we go through this process when so many other species do not. And what she said gave me chills. She said, our knowledge of the female reproductive system is rudimentary, and what we do to women is primitive. And she doesn’t mean that doctors are proactively primitively treating women. What she means is that we lack the basic understanding of how the female body operates. We don’t understand, and we don’t have that knowledge because up until the ’90s, females weren’t permitted in clinical research. And even beyond now requiring that female subjects are in this research, we still get very little funding for the research. We get a tiny sliver of overall spending on health research and development devoted to female conditions that are not cancer related.
So when I conceived Uterine Kind, the idea was that, okay, until research catches up, we need to give tools to the people who are experiencing these conditions to help them have a better experience in the healthcare system, and specifically to shrink the time from symptom onset to diagnosis. And that is the singular goal.
The way that we carry it out is by giving people a really easy way to capture daily symptoms in detail very quickly, and then have the opportunity to have a digital health diary where they can add their own sort of color commentary to their experience and track things that are personal to them, and then take that data and graph it for physicians and care teams interest. Interesting. Instead of walking in and saying, which I’ve said so many times, my periods are really bad, my bleeding is heavy, I don’t feel great. I have pain during my period. I have pain after my period. That kind of symptoms story has been normalized, so it’s not received with the gravity that is warranted. But when a patient who’s using Uterine Kind walks into their doctor’s office, they hand over a single sheet of paper, and on that paper is their data and it’s graphs that it can be scanned really quickly.
And so now, one, it’s very hard to ignore data. Doctors are trained to respond to data, not necessarily words so much excellent doctors are the ones who really listen to the story, but most doctors don’t have unlimited amount of time, and it’s very difficult to extract that data. So in this way, they just look at the data and that conversation quickly jumps from the symptoms story to what are the differentials that we’re working with here? What are the tests that we can be running? So the data aspect is really important. But the other thing that I think is equally as important is getting educated on our bodies, understanding what the uterus does, what it looks like, how it operates, to be able to visualize what’s going on inside your body, which really does contribute to a greater sense of control and presence right within the body. And that helps build a partnership rather than this antagonistic relationship of my uterus. I hate my uterus. It’s like it’s probably not your uterus.
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So let’s talk about the data and let’s talk about the symptom tracking. So what is the data that needs to be tracked and what are the symptoms that women really need to become more aware about?
Carol: So the data and the symptoms, I think the best way to look at it is that it’s full body. So wearables can track things like heart rate and sleep. Right? And to a degree, a lot of them are not accurate, especially when it comes to energy output and things like that. So what we focus on are self-reported symptoms, things that wearables can’t get at, and from a full body perspective. And so it’s very easy to indicate the level of disruption that you’re experiencing. And then beneath each of the categories that we track, you’re able to indicate what detailed symptoms you’re experiencing. Done on a daily basis, as I said, it gets you in tune with your body, but it also really helps you connect the dots on these symptoms. And as an example, I’ve been using the app since we got our beta in process since it was ready to be used.
And I connected a dot last week that blew my mind, along with undiagnosed fibroids. I had undiagnosed celiac disease for almost 25 years, and it still, I have to deep breathe when I talk about this. It still is a bit traumatizing. So on a whim, as I was thinking about what this app would’ve done for me, had I been in my thirties or in my twenties on a whim, I did a search for journal articles on abnormal uterine bleeding and celiac disease. And lo and behold, in 2014, there was a direct connection made to the degree that researchers want physicians to consider celiac disease as a cause of abnormal uterine bleeding along with fibroids, polyps, adenomyosis, things like that. So had I had my data in my hands, I could have shown my doctor, my bleeding is out of control, my gastrointestinal symptoms are out of control.
I have a symmetrical rash that covers my trunk. I would’ve been able to line up all of these symptoms, and if that doctor couldn’t connect the dots, I could very quickly take that data and go to the next doctor and not have to start at the top of the storytelling and go through that process with them. So it ends up bringing this full body data set to the table that is usable in consultations with mental health therapists, with primary care physicians, with a school nurse, with your gynecologist and ongoing numerous doctors that one might need to go see in order to get diagnosed.
Dr. Taz: Definitely and love that as thinking about the whole body, right? Because I, that’s my personal story. I am gluten intolerant, probably an atypical celiac, don’t have the classic markers, but definitely gluten intolerant. And it was driving my PCOS, right? It was driving my insulin resistance, it was driving the thyroid issue. It was driving the androgens. Took gluten away, and it’s like all of a sudden, everything lined up and you don’t need all this other stuff. So I do think that maybe our biggest take home message today is that whatever’s happening with your uterus or your ovaries or your hormones in general, they’re a sign of your systemic health, your whole body health. They’re not just one set or one organ, and we can’t think that way. Eastern systems the most and certainly didn’t think that way. And hopefully as we move forward, what disinformation is doing for us is making us realize that’s not how the body works, essentially.
What’s your take on wearables? The wearable industry is exploding, right? We’ve got the Oura, the Woo, Fitbits trackers. What’s your sense of the right place for a wearable? What’s your sense of that?
Carol: Well, I think anything that connects you to your body is really important. And just becoming more in tune with what’s going on with your body is beneficial. I have a couple concerns around wearables, and it kind of goes back to this idea of funding research. So some wearables have been investigated, they’ve been studied for their accuracy, and accuracy is an issue. And so specifically, like I said, with energy output and even just steps tracking, it’s not always accurate. It is accurate for things like heart rate that has been proven to be fairly accurate across all the devices. But I feel, here’s my concern. When we know that we don’t understand, we don’t have the foundational understanding of the female body, the endocrine system, and the reproductive system, and we then jump ahead to start creating these solutions to the problems that we’re experiencing.
Are we solving for something that we understand? And the answer is no. So for instance, with ovulation trackers, the data is not … When you go into a doctor’s office or you go to a fertility clinic with your ovulation data, they’re going to go and do their own research. They’re going to do their own tests. They’re not going to rely upon that. So I feel like for the consumer, it’s frustrating because it’s like, “Wait a second, I just invested in this, invested all this time in this, and now it’s not going to be used.” And so that’s an unfortunate experience, but I’m grateful that it’s happening because the potential for something to go awry when a technology was built based on the research that we have now, which is super limited, that makes me concerned.
And then that goes back to funding. We need to fund not the bright shiny thing. We need to fund things that help us build a strong foundation of knowledge around the female system, the endocrine system, hormones, what impacts them and how they respond to our environment today, in order, I believe, to effectively determine biomarkers for disease and create diagnostics and create therapeutics. When you look at the therapeutics that we have, we’re operating with the same sort of set of five flavors of medicines, and we’re just repurposing them or retrofitting them to some degree to address an issue. And that isn’t helping us leap ahead toward wellness. It’s keeping us stuck.
Dr. Taz: Yeah. What is the answer with funding? Because funding happens when things are monetizable. So what is the answer for funding? I mean, with my own practice and business people interested in it, they’re dazzled by the tech stuff. We want this tech, they’re not as fascinated by this foundational method of medicine that I’ve developed. They’re really systematically looks at all these different impacts. Many of the things you’ve talked about, gut health, inflammation, hormone balance, nutritional health, toxic load, how all of those in turn impact a particular issue. So what is the answer to funding? Is there something we as women can do? I mean, my poor the other day was like, “Can we do a woman’s march to DC to demand that there are different standards to look at our health and our stuff? What can we do? Tell me what to do.” And I didn’t really know how to answer her to be honest. So I don’t know if you have a window into the funding world and into the tech world when it comes to women’s health.
Carol: Yeah. I believe that there are people gathering together to work together to affect this issue. So there is hope, but I feel like the answer is kind of quizzical because funding, as you said, people fund things that are monetizable that are going to make or solutions to problems that will ultimately make money. So when we look at the financial impact of removing women from the workforce and from the economy, it’s devastating. And we’re talking billions of dollars. And we know the costs of diseases like endometriosis, PCOS, fibroids, or AUB. The cost is in the multiple millions of dollars, hundreds of millions of dollars annually. It bleeds our healthcare system, it stresses our healthcare system. So we have all that data, and this is where I hate to say it, but I feel like we are still sort of, our voices are drowned out by a lack of curiosity and concern around the female system. And there is this baked in idea that we’re fun and cute as little kids, and then we go to school and we make great art, and then pretty soon we’re going to be mommies.
Dr. Taz: Yeah.
Carol: And that continues to devastate us personally and devastate the progress that we’re trying to make. But I believe that that idea around the financial impact to our economy, that has to be driven home over and over and over again, and we need to sort of crack through the noise that is the next shiny, latest, greatest tech gadgets,
Dr. Taz: Right?
Carol: And get at solving these foundational problems.
Dr. Taz: All right, Carol, what are the top three uterine conditions that women need to learn more about?
Carol: Abnormal uterine bleeding, which actually is the umbrella term for conditions like fibroids and adenomyosis and endometrial disorders and ovulatory disorders. So abnormal uterine bleeding impacts up to one in three women. It’s very common and the symptoms are debilitating. They can lead to organ damage or anemia, and it’s wildly under-diagnosed.
Dr. Taz: Wow. All right. Carol, we’ve been talking about uterine health. You have an app called Uterine Kind. What are three symptoms all women should be aware of?
Carol: The amount of menstrual effluent or blood loss, blood and tissue loss during their period and their mental health and how their mental health fluctuates over time. And getting at it really detailed level because it can be very subtle in its impacts. And then also body experiences like rashes and eczema and dry skin. The skin is a real reflection of what’s going on within our bodies. And so I think it’s really important not to dismiss those symptoms either.
Dr. Taz: Love it. Let’s do one more. I thought of one last one. All right. Carol, top toxins that impact women’s hormones. What would you pick?
Carol: Anything that is petrochemical related. So any type of product that is made from petroleum, I believe even Vaseline jelly. I know some dermatologists swear by it. I would not use it on my body. So I think that’s really problematic. Also, BPA free doesn’t mean chemical free. And so we have research coming out now that while BPA has been removed from some plastics, some of the chemicals that replaced BPA in the plastics can leach even more endocrine disrupting chemicals. And also, I think just the flavoring and fragrance, those two words should be real deal breakers for products that you buy. If you see the term flavoring and there’s nothing specific about it means that they don’t want to tell you what’s in it, which are chemicals. And fragrance doesn’t need to be identified, and those are all chemicals as well. What we understand about the impact to the endocrine system, that the ludicrous amount of chemicals that we’re exposed to every day, what it does to our bodies, we don’t have the research and we need to understand more. And until we have the research, I’m in the play it safe camp.
Dr. Taz: Yep. I agree. I’m right there with you. And we see more and more clinically how this toxic load is impacting women’s health. I love that. I’m a huge believer in that. And we didn’t even have time to dig into the toxic world and what’s happening there, but maybe we can do that at another time. But look, this has been so enlightening and wonderful. I hope that women will check out your app for sure, and take a look at it. It’s called Uterine Kind. How can folks connect with you? What’s the best way for them to do that?
Carol: Sure. We’re on TikTok and firstname.lastname@example.org. We are also, our web address is uterine kind.com. We’re in the Google store, and we’ll be in the Apple Store in the next few days.
Dr. Taz: Wonderful.
Carol: But one of the things that we did was create an app that was device agnostic so that people could access it from the library computer or from their desktop, because not everyone has a smartphone. And so they can download the app at uterinekind.com. And also just want to point out that we don’t sell data and we don’t monetize data. We’re committed to keeping that safe so people can become members of Uterine Kind and know that their data is safe. And also, 10% of every membership goes directly to fund laboratories that we support that are researching common chronic conditions like the ovary lab at Cornell, and also the Rose study for endometriosis at Northwell.
Dr. Taz: Wow. Okay. I love it. Well, thank you so much for taking time out today to join us. I really appreciate it. And for everybody else, thank you for watching and listening to this episode of Super Woman Wellness. Remember, you can rate and review it and share it with your friends. If you do send me your review screenshot, I’ll send you a free bottle of Boost. Just email me email@example.com. All right, I’ll see you guys next time.