Listen to Margaret Melville of Lasa Health discuss the resources and technology available for early endometriosis diagnosis, pelvic pain management, and patient support.
Episode Summary
In this first episode of Fempower Health’s four-part series on endometriosis, Margaret Melville of Lasa Health joins to discuss this underrepresented condition. Margaret transformed her decade-long struggle with endometriosis and celiac disease into a mission to improve women’s healthcare today. She talks about the alarming shortage of OB-GYNs and primary care providers who have specialized training in endometriosis and the importance of early diagnosis of endometriosis to manage this progressive disease.
We explore common misconceptions and myths about endometriosis, the dangers of false cures, and the importance of patient advocacy and clinician education. We also cover the many applications of Lasa Health, a technology platform designed for women with chronic pelvic pain. This conversation is a must-listen for anyone looking to understand the complexities of endometriosis and pelvic pain or find endometriosis support.
Key Takeaways
The importance of early diagnosis for effective management of endometriosis and prevention of chronic pain or organ loss
The need for clinicians to educate themselves and their patients about endometriosis, self-advocacy, and treatment options
Margaret’s background in global health innovation and the founding of Lasa Health, which improves diagnosis and pain management of endometriosis through technology and education
Real-life applications of AI in improving patient care quality
Systemic issues in healthcare that hinder effective diagnosis and treatment of endometriosis
False “cures” of endometriosis to be aware of
The future of endometriosis care, including further innovation and community advocacy
A preview of upcoming episodes, including interviews with endometriosis specialists, advocates, and surgeons
"You have bias and you have years of things being done a certain way that we're fighting against. Getting doctors and healthcare administrators who are so busy and have so many [responsibilities]... Getting them to care about pelvic pain, or changing the way things are done at their hospital or clinic to improve care for pelvic pain patients, that is a monumental hurdle." - Margaret Melville
Related to this episode:
Resources for Endometriosis
Learn more about Lasa Health: www.lasahealth.com
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Guest Bio
Margaret Melville is the CEO & Cofounder of Lasa Health. She suffered from pelvic pain for over a decade and visited 25 doctors before finally being diagnosed with endometriosis and celiac disease. Margaret previously worked at USAID's Global Health Center for Innovation and co-founded a medical device startup. She has an MBA from INSEAD. She is passionate about using AI / ML to revolutionize the way we diagnose and care for women with chronic health conditions.
Transcript
Margaret Melville:
And I realized that this was the next problem I wanted to tackle. It was so huge and nobody was really talking about it at the time. But as I started talking to friends and family members, I just saw how many patients were being impacted. And I remember just joining all these Facebook groups and being like, wow, this is a huge, huge thing. And it's just a silent epidemic happening.
Georgie Kovacs:
Welcome to Fempower Health. This is Georgie. Today marks the beginning of an insightful four part series dedicated to unraveling the complexities of endometriosis and pelvic pain. In this opening episode, we zero in on the alarming shortage of ob gyns and the widespread lack of training in endometriosis among primary care providers. Our special guest, Margaret Melville, founder of Lasa Health, shares her personal struggle with getting diagnosed with endometriosis, a battle she largely navigated on her own. Through Margaret's story and our discussion, we highlight the critical importance of early diagnosis in managing endometriosis effectively, a condition that, if left unchecked, can escalate into chronic pain and organ loss. We also tackle common misconceptions and warn against false cures and products that prey on those seeking relief. This episode is not only a call to action for clinicians to educate themselves and their patients about endometriosis, but also a guide for patients on how to advocate for themselves by seeking out supportive healthcare professionals and exploring all treatment options.
Georgie Kovacs:
And please remember, the views expressed in this series are those of our guests and should not replace professional medical advice. We encourage our listeners to consult with their doctors to find what's best for their unique situation. Our hope is that this series will enlighten and support you on your journey with endometriosis. So let's get started. So, Margaret, why don't you talk to us first about your own journey with endometriosis, with what you're comfortable sharing about it. Because I think the personal stories are really what leads so many of us to make an impact in women's health. So tell us your own journey.
Margaret Melville:
Yeah, definitely. So I have bowel endometriosis and I also have celiac disease. And so I always had stomach issues and painful periods and so many symptoms going on that were all very confusing for the doctors to figure out because to them it seemed like the pain was jumping around all over my abdomen. So obviously they told me that was fine and to just relax and it was just stress or IBS. And ultimately it took about ten years to get diagnosed and about 25 doctors when I went back and added it all up. So I got diagnosed with celiac disease about two years ago, and then endometriosis in January, I had my first surgery.
Georgie Kovacs:
Wow. How did it go?
Margaret Melville:
It went well. I mean, I think that to me, the biggest thing is that to have that definitive diagnosis right, to actually have all those years of feeling like I was going crazy, validated to say there's a reason why you were in this pain. And then I think that there's always this hope that surgery is going to completely fix everything, and that rarely happens. And so then post surgery, it's about figuring out pelvic floor therapy and lifestyle changes and medications and figuring out long term, how you're going to manage the symptoms.
Georgie Kovacs:
So many women are struggling, generally speaking, and having a hard time getting answers. And many of these women, it turns out, do have endometriosis. And so I'm so curious, what was your life like as you were going through this journey? What were your symptoms? And why were doctors not pointing to endometriosis? And, well, you also had the complication of also celiac disease. So I'd love to just better understand that because I think everyone has similar but different journeys, and I think hearing those stories are always so helpful. So maybe you can tell a little bit more about that.
Margaret Melville:
I think you hear a lot of stories of endo, and people have such a spectrum of symptoms. So I'm by far not the most severe case of Endo I've heard. But I do think it's important to share many perspectives because Endo can present in so many different ways. For me, I think the biggest thing that held me back from a diagnosis is just a stigma about period pain and it being normalized. So having sisters and mom who also had had painful periods, that was just normal, right? Like it was normal to maybe have to miss school on your period, or it was normal having friends who had really severe periods, way worse than mine made me feel like, oh, mine aren't that bad. And so it wasn't until I was in my twenty s that I even brought it up to a doctor. And no doctor had really asked me about it, or if they did, I didn't really know what was normal and what wasn't normal. So I think that's a huge thing that holds patients back, is not knowing when to talk to their doctor.
Margaret Melville:
And then the second piece is, when I did first bring it up to a doctor, I didn't know how to bring it up to the doctor. So I remember I was really nervous. And at the end of the appointment, right when they were about to leave, I was just like, hey, by the way, my periods are pretty bad. Is that normal? Is that fine? And they're like, yeah, that's totally fine, and then left the room. And so not really dedicating an entire appointment to discuss it, minimizing it myself. And I really think that it would have been differently received if I had said, hey, I want to have an appointment discussing this topic. I am missing school. I have to take ibuprofen every day.
Margaret Melville:
I am nauseous, really outlining exactly how it's impacting my life. But I didn't really have the language or the knowledge of what was normal, what wasn't, to have that conversation with my doctor until I was much older.
Georgie Kovacs:
Endo is so interesting, right? Because we do normalize pain. So it's like, how do we talk about it? And generally with a lot of these women's health topics, we're not really taught much of anything. And it's like, how do you describe something and which do you need to describe which is normal, which is not? And like, for example, I recently posted on my social media, it was actually a repost of an OBGYN who had put into visuals what too much period blood looks like. And so many people were sharing it because people are like, I didn't know. I didn't know. I mean, it's amazing how little we know.
Margaret Melville:
Yeah, exactly. Because where would we learn that? And so many things are common, but that doesn't mean they're normal. And that doesn't mean there aren't things that can help just because it's common. So it's definitely tricky. And I want to be careful that I'm not blaming the patient. Absolutely. But what we need is better tools to help facilitate that patient provider communication. Doctors have such busy schedules and short appointment times that it's just really, if you do end up getting diagnosed at a young age, you have an amazing doctor that really took the time to listen to you and took the time out of their day to sit with you and go through all your symptoms.
Margaret Melville:
And that just isn't what normally happens. And so that's why I believe we need tools to help doctors be able to do this more effectively and facilitate that communication between patients and providers.
Georgie Kovacs:
So tell us now your professional background, because now this all ties into some things that you're trying to do to help make changes in the endometriosis space. And so now it's kind of come full circle where you're merging your knowledge and your experience. So tell us about your professional background.
Margaret Melville:
Yeah, so I work in global health innovation, so I worked with USAID during the height of COVID While managing pandemics, I worked started a medical device company where we developed a neonatal ventilator for low and middle income countries. So I've traveled all around the world looking at how we can make health more affordable, more accessible. And along this way, I was having my own health problems. And so when I was doing my masters, I was trying to figure out what I was going to do next and kind of at the accumulation of really severe symptoms and finally starting to get some insights into what could be causing it. And I realized that this was the next problem I wanted to tackle. It was so huge and nobody was really talking about it at the time, but as I started talking to friends and family members, I just saw how many patients were being impacted. And I remember just joining all these Facebook groups and being like, wow, this is a huge thing, and it's just a silent epidemic happening.
Georgie Kovacs:
Yeah, no, absolutely. How did you finally get to the diagnosis? Because you really had to do a lot of digging to finally be able to get the right information. And again, celiac and endo, like, whoo, right? Because honestly, I could see getting diagnosed with celiac and then people being like, no, okay, that's it. It's just the celiac because of the symptoms, right.
Margaret Melville:
So I ended up getting put on continuous birth control for most of my twenty s, and that was able to manage a lot of the pain. And so for a while, I wasn't actively looking for a diagnosis. The pain was manageable. But during my masters, I actually caught Covid and that really exacerbated endoceliac everything. And I was just in excruciating amount of pain every day. And I went to the emergency room, I went to primary care, I went to Ob. Just going to all these doctors trying to figure out what was the cause of it, what was going on. And this was the same time, actually, I was doing my masters, I was thinking about what I wanted to do next.
Margaret Melville:
And just having these doctors not believe me, not take my pain seriously, dismiss my pain, opened me up onto that topic initially. And so I decided I was going to do something in women's health, in how can we use AI to help patients get a diagnosis, help doctors take patient symptoms more seriously. And we were trying to decide, okay, well, we can't boil the ocean, we can't tackle every condition at once. So what condition should we start with? And we ended up picking endometriosis after doing a market analysis and seeing that it was really just a large patient population and a great place to start, so we decided we were going to focus on endometriosis. And I had a couple of friends with Endo, so I did some interviews with them, and then ultimately, that year, I did about 100 interviews with endometriosis patients. And again, at this time, I did not think I had endometriosis, but I just kept hearing these stories again and again and hearing symptoms that sounded just like mine. I was like, okay, wait. I think I might actually have endometriosis, too.
Margaret Melville:
And I told that to a couple of doctors. They said no. And then, like you mentioned, that was when I got diagnosed with celiac, which was just happenstance because my little sister got diagnosed. So I asked my gi. I'm like, could I have celiac? And he was like, no, you don't have celiac. And I was like, can we just run a blood test just to see. Ran a blood test. It was positive.
Margaret Melville:
And he was like, it's a false positive. You don't have celiac. I was like, well, can we do an endoscopy to confirm? And he was like, okay. So we did an endoscopy, and he came after, and I was like, how did it look? And he's like, it looked totally fine. You don't have celiac. And I was like, well, did you take biopsies? Can we run them to the lab just to be sure? He was like, yeah, we can, but you definitely don't have it. Everything looked fine. And then the lab biopsies came back positive, and I was like, I had it.
Margaret Melville:
And then, like you said, once I got diagnosed with celiac, it became really difficult for anyone to believe I had another condition, because so often there's this framework of, like, you're trying to find the underlying cause, and then you find a cause, and you stop looking for causes. But so often patients have multiple conditions, so I had to keep finding doctors. Fighting. Found an endometriosis specialist in my area, scheduled a surgery with them, and got diagnosed. So the only doctor to ever think I had Endo was my surgeon.
Georgie Kovacs:
What blows my mind, because I didn't know this part of your celiac story. Know, I interviewed Alice bast of beyond celiac, and I understood it's pretty simple. There's a blood test, and you have it or you don't. And the fact that you had to advocate for yourself and the fact that you knew, because I would never have known if I were in your shoes. I would have said, oh, blood test is negative. I mean, I might have pushed, but I would never have known. Get the endoscopy.
Margaret Melville:
The blood test was positive.
Georgie Kovacs:
Positive. And you still knew to continue the advocacy, and you've been in health care. And this is the other thing I'm noticing, is, if you're in healthcare, the fight. I'm in health care, too. The fight that I had to have to be able to figure out what was going on with me was crazy and why actually I started fed power. Health is, I'm like, I'm in healthcare, and this was impossible. What about people who aren't?
Margaret Melville:
I know, yeah. I always say, if it was this hard for me to get diagnosed, I don't know how anyone else ever gets diagnosed because, yeah, it was a fight. I remember the week before my endometriosis surgery, I had a GI appointment and mentioned to them, hey, I think I'm having all these symptoms still. I think I have endometriosis. I'm going to have a surgery. And they were like, no, don't do it. That's going to be a complete waste. You definitely don't have endometriosis.
Margaret Melville:
And I was like, well, how many patients with endometriosis have you treated? And they're like, no, we haven't seen any. It's super rare. There's no chance you have it. And I was like, you know what? I really don't think that my symptoms are explained by IBS. And I really think it aligns with. Endo was trying to explain why. And he was like, well, do the surgery if you want to. Let us know what happens.
Margaret Melville:
And so I came back after my surgery and brought my pictures, and I was so excited to be like, look, endometriosis is growing on my erectum and my sigmoid colon. This is what was causing the pain. And they wouldn't even look at the pictures. They were like, oh, endometriosis, that's not really in our purview. You should see Ob for that. But it was growing on my GI tract. So I brought my pictures to show you so that I want to know what this means for my GI tract. Am I going to need a bowel resection one day? What can I do? I had all these questions, and they wouldn't even look at the pictures.
Georgie Kovacs:
How did you know what to ask when you were dealing with the celiac part? Around continuous testing for them to finally believe you. What did you research? How did you know? So that others may learn from.
Margaret Melville:
I read medical journals. I read the clinical guidelines. Like, I read the publications from these associations about. For each condition, there is a clinical guideline for what are the steps for a diagnosis? What are the blood test values that mean it's positive or negative? What are the next steps? And so I really just try to read it all and educate myself. And it's not realistic for patients to have to read medical journals. They're so dense and hard to read. So that's why with Endo, we put together our twelve week endometriosis course that's free on our app that walks through all the medical journals that I read when getting my diagnosis, but putting them at an 8th grade reading level so that they're easy to understand and approachable and you can just pull out the parts that are really relevant for you when it comes to making an informed decision.
Georgie Kovacs:
Thank you very much for sharing that. Because I agree with you, we need to simplify the language. Okay, so now let's go to Lasa health. So we've now given the history, and I'm sure there'll be more things that come up as we continue to chat. But you had this professional experience, you've done this market analysis. You used your 100 plus interviews to, one, learn more about what you wanted to do, but two, diagnose yourself. Tell us what led to what you learned from those interviews that got you to build Lasa Health. Like, what was it that said, okay, this is where the gap is?
Margaret Melville:
Oh, my gosh, I think I left the interviews just more confused than I started because it is such a complex and multifaceted problem. Right. There's not one easy thing that's going to fix everything. But the two things that I really anchored on were problems with differential diagnosis and problems with informed consent. And so that's what I've really built the platform on. So differential diagn