In this week's episode, Aria Vyas gives us her perspective on what living with endometriosis is like, and lessons she's learned on advocating for care in the bumpy ride to diagnosis and proper treatment.
Here we are yet again, uterinekind–they are trying to take away our basic rights, our contraceptives, and our healthcare. Learn about the current attack on our access to healthcare and what you can do to help bring the Right to Contraceptions Act to light!
When 1 in 10 people have endometriosis, you may start wondering if you’re a part of the crowd. Our amazing guest Aria Vyas tells the story of her experience with endometriosis to help you get insight into the reality of living with endo. She tells her horror stories of the severe pain and neglect from doctors, so you can learn what to do to advocate for your own diagnosis. From endometriosis treatments, hysterectomies, and positive progression to what uterine and endo health looks like after Roe v. Wade, this is a wonderfully packed conversation.
Is it shark week? Lastly, we end on a high note that will leave you relieved the next time you visit the ocean. Listen in for tips on how to stay extra safe during your summer swims!
Thanks for listening, learning and being you. And join us back here every Tuesday for all things uterus, in service to you, uterinekind.
Carol:
They're coming for birth control, but they're not coming to make it easier to diagnose endometriosis. That's too hard. We're here to make it easier for them by bringing pressure for progress. And to celebrate our pressure campaign, we're giving away clean beauty in today's show. I'm Carol Johnson, and this is Hello Uterus.
They're coming for things like IUDs and Plan B and stuff, and I'm just going to go out on a limb and suggest that they don't even understand Plan B, what it does. They don't understand what an IUD is or does or what it's used for. They don't recognize and by they, I'm saying the Supreme Court empowered by the Republican Party in the United States of America, which is hell bent on taking away power from Uterine kind, and they don't recognize that these contraceptives are medicines, that they have multiple uses, that you can't just pull contraceptions out of the medical world and not have it collapse. Okay? It's already collapsing with the repeal of Roe v. Wade and the fact that doctors actually have to call attorneys first to figure out whether or not they can perform a certain treatment on someone. And then when they call the pharmacy to get a medication, the pharmacist has to now act like a parent and say, well, are you doing something bad, doctor? Because if you are, I have to know about it and I'm going to report you. The whole way that this has been handled is nonsensical. Non clinicians are making decisions on the fly. Well, not really on the fly because they've been planning this forever. But even then you would think you've been planning this for the last 50 years. So at any point in time, did you think maybe we should meet with Health Systems and we should meet with a cog and we should get serious about planning for a life after Roe v. Wade? No, they didn't do that at all. And they should have, and they should be smart enough to know that they have to do that, but they don't care. So here's. I don't care. Round two in that they're going to try to take away contraception, which is going to complicate the ability to treat things like endometriosis, which we're going to focus on in this episode. I promise it will not be an entire 60 minutes of rage before a major change in a medical process is enacted. Health Systems study every conceivable possible outcome. This is 2022. There was zero planning, zero forethought. It's unconscionable. So I just want to say super happy, but definitely cautious to announce that the Right to Contraception Act did in fact pass Congress this week, and it is headed to the Senate. Now, I'm going to make no promises on what's going to happen in the Senate because that is a squirrelly group of people. But in Congress, they voted 228 to 195. I don't know what to call them. Individuals who think that contraception should not be available. That's how close that was. 28 plus five. Do some math. 30 ish 3233. I don't do math. 200 and well, let's just look at it this way. I really don't do math. 195 people don't want us to have access to contraceptives in 2022. So there's 195 people who need to be voted out of office. And I'm going to make it priority to make sure that we post a blog post about this at Hello Uterus and identify those 195 people in the states that they are located in so that you can go ahead and plan to support the people that are running against them, because this is nonsense. We are talking medicine and they are talking religion. We are talking medicine and they are talking patriarchy. We are talking medicine and they are talking about power. That's what they want. So on the other side, we've got the Right to Contraception Act, sponsored by people like Representative Manning, Representative Castor. They are fighting to codify the right to contraceptives so that contraception is a constitutionally protected right, the way the Equal Rights Amendment should be. You know, connect the dots. There is a reason why it's not. And every time I think, how could we have made it easier for us to protect our right to contraception by having the Equal Rights Amendment published to the Constitution? That would have helped us out a lot. So we need to prioritize that. But anyway, this Right to Contraception Act is now going to go to the Senate. So I would like for you to please call your Senators. And even if you're in a blue state and you're not concerned about this, call your Senators anyway and tell them that this is something that they need to talk about nationwide, that they have to advocate for all people who need access to contraceptives. Big stuff happening in the world of uterine health. And so I'm grateful you're here with us this week. And I'm so excited to introduce you to someone who has been living with Endometriosis, who has been battling Endometriosis and battling the healthcare system in order to access proper care for Endometriosis. And she also has decided to make her career, a career of public health advocacy. So we're going to take a quick break and then when we come back, I'm going to introduce you to Aria Vyas,
Carol: An article written and published in Neo Life by today's guest about her experience with Endometriosis floored Me. Beautifully written by Aria Vyas. The Peace Chronicles, the battle to be seen and heard, to be taken seriously, to be respected. At 15, trying to get an Endo diagnosis. This path to diagnosis and surgery for her, it continues to this day. And she's going to tell us a little bit about her experiences and give us some really good insight into how we can accelerate a path to diagnosis and why that is crucial. She's a writer and public health advocate based in Washington, DC. As a person living with Endo, she's passionate about topics at the intersection of women's health, health, equity and biotechnology. In her career, Aria has experienced working in the realms of social justice, health policy, as well as journalism and media. She holds a Bachelor of Arts in Psychology and Public Health from the George Washington University and a Master of Public Health degree from the University of Pennsylvania. Thank you so much for taking the time to be with us today and to discuss what must have been a traumatic experience that shaped your youth and hasn't led up.
Aria: Thank you so much for having me, Carol. I'm really excited to talk about these topics and I'm really excited that you're shedding light on them with the podcast. That's really exciting. Thank you.
Carol: We're grateful to have you here, and we're grateful to be here to do this. I wish I had started five years ago because we're catching up, right? We're doing a lot of catch up these days. So there's a story in the piece that you wrote about a gynecologist explaining period pain to you. Can we begin there? Because that is at the start, I believe at the start of your experience trying to get diagnosed. And I found it a pretty remarkable story.
Aria: Definitely. Yeah, I remember it was definitely the first time I had really processed that I could have Endometriosis and what reality looks like for people with periods. But I had basically just had a pretty traumatic experience with my first ever Endometriosis flare up cramp. I was 15 years old, taking an Earth science final exam, and I had fainted from really just catastrophic pelvic pain. I didn't understand what was happening to me. This was my first time experiencing something like this. And according to my school nurse and what I'd heard, I assumed it was period cramps. But I didn't know if period cramps were supposed to hurt that much where you could faint or have such a strong response. And so I did what anyone would do, and I went to my doctor and I saw gynecologist for the first time and I had explained what had happened. I expected that she would respond urgently because it seemed serious to me. But when I told her about my pain and about my period, she said it was so normal to have period pain and that perhaps I just had more period pain and more severe pain than other people. And yeah, I think that was kind of the first time I was really exposed to how dismissive the health care system can be towards people experiencing this.
Carol: Yeah, you were 15 and she actually had the nurse to draw a bell curve for you didn't see right.
Aria: Yeah. So I had brought in a WebMD handout of Endometriosis. I feel a little bit lucky in the sense that I had a strong suspicion that I had this disease early on. Right. When I had googled my symptoms after I painted during the exam, I realized that my symptoms fit actually just exactly with this disease. My bowel movements, these random aches and pains I was having that I hadn't really pieced together. It was all making sense. And so I was pretty excited, almost. I had a printout that I took with me to the office, and I was like, almost like, she'll be proud of me. I'm helping her with my diagnosis. And I showed her when she said that this is normal, I showed her the endometriosis handout, and I said, no, I have this. I really think I have this. And very casually, she just flipped the page over. She didn't really read it. And she drew quite a large bell curve and circles the center of it to demonstrate that that's where most girls and women and people who have periods, that's where their pain is. It's kind of just normal to have period pain. And then she circles the far right of the curve to show that I just happened to have a lot more pain than everybody else. And then she prescribed me Advil and sent me on my way.
Carol: We all know the ending, right? We can just say insert ending here because we all know it's like a pat on the head, a packet of Advil, some birth control pills. But what really stood out to me in reading that was the words, it just so happens that you are here. And it's like, oh, wait a second. Is that a euphemism for a diagnosis? Because I'm thinking we're supposed to be getting a diagnosis, and you're acting like that sign at the mall, you know, it's like you are here. Exactly.
Aria: Yeah. It's not helpful to just remind me that I have a lot of pain.
Carol: Right? Let me clue you in.
Aria: Yeah, exactly. It's not helpful to normalize or dismiss it. And I think ultimately, I was looking for an endometriosis diagnosis, but ultimately, even beyond that, I was just looking to get help for my pain and for my experience. And I think that is the part that's so frustrating, is doctors just not listening even to what's happening in the current moment, endometriosis or not, why it's not normal to have so much pain.
Carol: Right, that it was just glossed over that you passed out from pain and you're 15. You know what's crazy about that is that doctors don't recognize that you come in with an expression of what your experience has been, and their first statement discounts all of that. Right. Because it's very common to go in and say, I'm in hell. And then they say, oh, no, you're not. You're actually on Elm Street and everything's fine.
Aria: No, that's really very much how it happens. And when you put it like that, it's so funny because it seems so ridiculous for someone to say that, but that really is you go in only after having experienced something intense and needing care, and they very calmly and kindly, happily not happily, but in a very optimistic way, tell you that you're just fine and that their next appointment is here and you've got to go. It's very frustrating forever.
Carol: Yeah, it's crazy. We laugh about it, but I think I'm laughing about it, but I'm like, laughing, crying. I guess I laugh because I'm so angry that I don't want to be like an angry podcaster. It's nonsense because this is not in our minds. I'm just so mad that doctors don't understand the negative impact of gaslighting because you had the determination to continue. But I'm sure that there are other people who have gone in at that young of an age, and when they heard that, they were like, oh, I guess I can't really complain about it anymore, right.
Aria: I had the determination to continue, but it was after a long time, and it's kind of been an on and off cycle. A lot of it was out of my hands whether I was determined to find out what was happening, and it was more or less decided by the severity of my symptoms and kind of the inability to continue otherwise. But the medical gaslighting, a lot of times I understand it's unintentional, and doctors don't realize how impactful one or two dismissive comments can be in the grand scheme of things. But the gas lighting is so intense, and it is relentless, almost like you were saying, it's nonsense that this is how things are happening, and it is. It doesn't add up. It's nonsensical. And so at some point, you have to believe a version of it that does add up and does make sense, and that's just not the reality of it. For example, I found a lot of times throughout high school, my experiences with doctors were either that one end of, oh, that's so sad. You're having pain. Like, we feel so bad for you, and here's your ads on your water, what not. And then the other hand of it was, oh, it's just not possible that you're having those symptoms. So it was either like it just couldn't exist. You just couldn't have a hot flash at 15 because that's not possible. You couldn't have XYZ symptoms at such a young age because it's just medically not impossible, or it's normal. There was no in between of it. And so I think that if that's what you're being taught to believe, that's what you believe after a while.
Carol: Yeah. How do you keep yourself sane in that environment? Because the way that you just put that was pretty remarkable. It's like, on one hand, they're saying, like, oh, it's okay. It's normal. You don't have to be worried about this. And you're like, yes, but this is hell. So if this is normal, I don't know if I want to be here. And then on the other side, they're telling you, oh, no, you're wrong about what you're telling me about your body. And then my thought, if I was in that situation, I would feel personally attacked. Right?
Aria: It feels that way. And I think some of the lowest points and the most emotionally debilitating parts of the disease really did revolve around that gaslighting. And trying to figure out your severe, intense pain in the midst of everyone saying, no, it's so normal, I can remember pretty viscerally. Like, my aunt really believed me. And I remember all my parents were saying, the doctors are saying this. It's not quite adding up. And the nurses, everyone's kind of on that page. And my aunt was like, no, we're going to find out I've had pain like this. We're going to figure out what's happening. And eventually the doctors, she talked to enough doctors and they were like, this is normal and this is fine. And she called me and she's like, I'm so sorry, but I think that this is just what it is. It's disheartening to not be believed and it's debilitating to have to manage that, but it's just like a total loss of faith when nothing adds up to your experience, I feel like. And that's when having the community is really important and have getting access to Instagram pages or just like reddit blogs and stuff, that's where that really kicks in. Yes. And you all want to go into the doctor and have the doctor say you're fine. That's the best when it's real. But when your experience is in direct conflict with them saying it's fine, go with your experience. Yeah, definitely. But it's hard to go with your experience, too. And I say all the time, trust your instinct, advocate harder, advocate louder. You have to do those things, especially in the healthcare setting, but it's very challenging to be able to do it time and time again, especially with a disease like this, because it is exhausting and you don't really have the energy or the resources to be able to do it. And a lot of times the doctors might not have an appropriate way to respond, depending on where you are. So it's definitely frustrating from that point, too.
Carol: Can you describe what endo felt like for you?
Aria: Yeah, endometriosis is just so many things and it's so systemic and it manifests, and there's no part of my life that doesn't touch it manifests in every way. But I think overall, debilitating is the word that comes to me all the time in terms of just lived experience, and it really encapsulates how it affects everything. I guess the pain is debilitating, but the systemic effects that aren't so sharp, that are chronic, but that's also debilitating and the way it takes away from your life. I think endometriosis is very sharp and demanding, I think is the other way I feel about it. It's almost so demanding that it's hard to think about anything else when it decides to take center stage, which is frequently and unpredictable. But it's one of those things where if you're driving, you have to pull over to the side of the road. If you're listening to music, you have to turn it off and you have to pay attention to what's happening. It really takes up everything.
Carol: And does it happen sometimes? You indicated that you don't get a heads up. It's not like it follows your menstrual cycle, right?
Aria: It doesn't. And that's a common misconception. It is associated in parts in ways with menstruation, but the tissue that is acting up, that is different from the tissue that's in the endometrium, and it releases estrogen and causes inflammation and pain and irritation on its own cycle. And it is completely worse. It's so much worse during a period or during other cramps and other cycles, but not other cycles, but other symptoms that you would have with your period or PMS or other gastrointestinal or gynecological diseases. But it's an independent thing. And I have pain and flares weeks before my period, weeks after, when I expect to feel fine. Sometimes there are parts you can predict, but there is a lot that you can't.
Carol: And when it flares up, can you describe what that feels like? Is it like a slow build? I guess there is no real one thing. Right, because you had an onset while you were in school that was so painful you lost consciousness.
Aria: Yeah, definitely. I guess so. When I'm thinking of like a really traditional flare and flares can come in so many ways. Like a lot of times for me, I wake up the whole day, I feel like I'm sedated and I can't open my eyes all the way. And that's part of a flare. It's total exhaustion and fatigue. Part of a flare is having severe joint and ache, pain and back pain and having to stretch all day and muscle tightness. And maybe for some people I know, they'll have migraines and they'll have like, other so it definitely varies. But the most traditional sort of flare that I can think of is the sort that I had when I painted during the exam, which is it's a slow build, but you know, it's insidious and you kind of know it's coming. And it's kind of like my mom calls it like hurricane prep or like you just like you're kind of just doing whatever it takes to reduce the harm that will ensue. So getting yourself to a safe place, a comfortable bed, a place where you can maybe access a hot bath, getting a heating pad or a hot pack, whatever medicines you need. For me, I need a lot of Sofran and nausea medicine. I can't take advice, so I need like a specific type of painkiller that's good for your stomach and it's a bunch of things. So there's a lot of preparation that goes into it once it happens. It's very painful, very severe. It's almost indescribable. I know at times it feels like razor blades or like for me, it feels like there's knives in my stomach and they'll twist when it sharpens. I've never given birth, but I've compared it to labor contractions at times and I've heard from women who have given birth that it can be similar. So I think it really varies. It's just very severe.
Carol: I think the biggest takeaway is from all under patients, what stood out to me was your description of it being demanding, which gave me the chills because it made it feel to me like it was like an invader, like an alien in your body. And it sort of overrules what you have going on and takes control.
Aria: Yeah, I can see it like physically going into the operating of the controller room and taking the gadgets and digits and saying like, no, we're in control now. And that's really what it feels like. It's not just that your uterus is contracting and cramping, it's changing signals from your brain in terms of how pain receptors are processing pain and firing off. And it really takes center stage in every way at that point.
Carol: And just a reminder, all of this descriptive talk about the lived experience with endo, like people are sharing this in their doctor appointments and it's just getting completely blown off.
Aria: Actually, I think about this a lot because I'm constantly in a cycle of how can I get better care when I talk to a doctor if I'm in an Er. And I've tried kind of everything for a long time. I'm a pretty calm person when it comes to serious matters. And so for a long time when I talk to doctors, I was completely rational. I didn't cry, I didn't stutter. I was very evidencebased, sort of very calm about it. And that didn't seem to inspire the sense of urgency that I thought it would. When I say I have level ten pain and I'm being very serious and calm about this because I need care. And so on the opposite end, I would just be hysterical. I would cry, I would scream, I would ask for the help that I needed in the way that was happening. And I thought that that would inspire a sense of urgency and that only really led to psychological referral. The answer is not hysterectomy and it's not hysteria and it's just you're usually listening to the patient and however they're communicating it. And anyway, I think that the way you talk to doctors really matters. And I've not figured out the right formula just yet.
Carol: Wow. And you have a ton of experience because you've seen how many doctors during this experience?
Aria: Before I got diagnosed, I've seen about twelve gynecologists, different gynecologists. But since then I've seen countless more. I've stopped counting. Oh my gosh. So it's also a very expensive undertaking. Yeah, I was just talking to my family about that last week. We've got so many care teams and every time I've got a flare. I'm like it's just something to think about. The health care system is very expensive and I'm very fortunate to have good health coverage and insurance. But I think constantly about the care that you would need and have to try and access. If you didn't have that access yeah, you wouldn't get that care. You just wouldn't. Even with all the access in the world, I think about I second guess myself before I go to the Er or if I call an ambulance or something like that. It's definitely a consideration.
Carol: Have you had to call an ambulance because of endo?
Aria: Yeah, I called an ambulance last weekend, actually, for the first time in years for structure. I thought it was a very severe endoflair.
Carol: Oh, gosh, I'm getting really personal now, so just tell me to not get personal. This is a health podcast, but still I don't want to pry. Was it I believe that there's endocysts that are called chocolate cysts that are on the ovary.
Aria: Was it that I don't know that it was a chocolate. I just know that it was a cyst rupture. That's what we got from the CT scan. But I haven't seen an end to specialist about it since it was just in the emergency room. Yeah, no, it could have. I'm not sure, but I definitely have the chocolate, or I used to have, at least before my excision surgery recently, the chocolate cysts and the endometriosis that form. But even just a normal cyst rupturing is very painful for anybody. But I imagine in a complex environment with multiple surgeries, it can trigger other sorts of pain and complications and you don't know what it is.
Carol: You thought it was an endoflare. It just goes back to that idea that we really have to get better at empathy and compassion and mental support for people who are dealing with chronic uterine conditions because of all of the myriad of issues that we talk about from prejudices that go on and the gas lighting and also the prejudices that go on in terms of medical diagnosis and treatment procedures. Right. It's kind of funny, you know, how sometimes people say, like, dogs look like they're owners. Endometriosis to me, is a reflection of where we are in uturn healthcare.
Aria: It really is. I actually thinking about this this morning. I was thinking about how I used to think that I was incredibly privileged and incredibly just in a great position in terms of gender equity in health care. When I was in high school and when I was younger, I thought I was not affected as severely by gender inequity in healthcare. And I realized that I just hadn't been able to understand that I was living in a disempowered state in terms of the care I was receiving and in terms of my health related quality of life. And I think so many girls and women and people with uteruses must be also living in this disempowered state, but there is no way to really know and diagnose it. And I was thinking we don't really have a good staging system. It's kind of like endo. There's no good baseline. We don't really know where does the pain start and what's normal and what isn't and so tough.
Carol: Yes, it is true. I think that there's something there to ponder and maybe you'll write about it one day. The disease itself says a lot about how we operate in this arena. It's like endometriosis is a health crisis at the individual level, which is really what brought me initially into it, but then it's very just a microcosm for what it represents at the public health level and the impact it has at the population level. For sure, yeah. Did your experience with Endo lead you to pursue a career in public health?
Aria: It was a little bit the opposite way, I think, which is I kind of fell into public health and then found myself in and around women's health issues and gender equity. And the more I learned about gender inequity and the more I learned about these topics, it actually led me into Endo a little bit and to learn about Endometriosis and to really pull out those threads and try and understand it better. And I don't know if it was kind of subconscious and they were working together and I was just, like, pulling its strings until I found something that clicked a little bit more. But no, I was really passionate about genderbased issues in college when I was studying public health, and every topic and project I focused on was about that. And it wasn't until I got to graduate school and my advisor had endometriosis and Crohn's disease, and then I really started to think about it for myself again and started to think about it from the lens of a public health crisis.
Carol: Well, we're glad that you did, because we need the help. Which leads me to my next question. What are you seeing with the repeal of Roe v. Wade and how is it impacting just uterine care in general?
Aria: Oh, my gosh, yes. I'm so glad that you asked about that. And I saw that you had a podcast episode where you dive into Ruby Wade and I've been meaning to listen to it. I keep looking for content on this, and I'm struggling to find some, and it really worries me. And I'm definitely very nervous about what's to come because to change the way that endometriosis care is set up and experienced by patients, it's so intricate and complicated and detailed at so many levels, and it requires this multi disciplinary, collaborative effort from policy, from health care, from society at large. And it's hard to imagine that level of consideration in women's health when politicians are debating in real time rights to contraception and are having misinformed and disinformed conversations on social media and on television about. Women's health when they are simply unable to discuss the anatomy in an accurate way, or discuss the process of how a pregnancy begins, or discuss why we even really have the rules or the thought processes around abortion that we have now. So it's just really frustrating for me, I think, too, and scary to think about how we could change endometriosis without these very basic rights, freedoms and conversations.
Carol: Yes, it's wild to see it also, I'm not at all surprised, but when a health system looks at changing a process that can be multiple months if not years, they call in experts, they have consultants, they lay out all the scenarios, they take into consideration all the stakeholders. I'm not saying that every move they make is like perfect and awesome, but what I am trying to say is that nobody flips a switch in a hospital and completely changes the way care is done.
Aria: They won't do it for one patient even. There are so many hoops you've got to jump through to get one medication, change one part of your health plan or healthcare process, change. So you're completely right. It's so out of pocket to do that.
Carol: So imagine you wake up and the Supreme Court made a change in the delivery of healthcare and they do it without any experience, without they don't even care. So it's like kind of pointless to talk about it from that angle. But it's like what they need to realize, well, maybe not them because it's not going to work out. But what we ought to realize is that you can't do that and we're seeing the fallout. Right. And I haven't thought about it in terms of endometriosis. I've been thinking about it mainly in terms of like ectopic pregnancies and partial miscarriages and things like that. How does this impact endo, people living with endo?
Aria: Yes, I think it's going to impact endometriosis in so many ways, beyond just the obvious ones that we're thinking of now in regards to ectopic pregnancy. People with endometriosis are three times more at risk and more likely to have an ectopic pregnancy. I mean, for anyone experiencing that, abortion would be life saving care. But I think just the basic care that people with endometriosis need in terms of medication, hormonal medication that would be severely impacted. I would have a very difficult time advocating to get the right hormones. I already have a difficult time trying to figure out which hormonal therapies I should be on and how to get my medicine in time. I couldn't imagine having to fight for just the access to that medicine, which would have nothing to do with contraception even. It would just have to do with quality of life. It feels very life and death, I think, with how severe endometriosis symptoms can be and not having access to that care literally with the medicine. But also I really worry about the fallout that the Supreme Court decision will have in terms of deepening and worsening the impact of implicit bias against women seeking help for menstrual related conditions, uterus related conditions in general. I think that anytime I go to the Er for immediate care or I meet a new doctor, it's already an uphill battle to try and advocate for myself to be taken seriously. And I think that what the decision does and how it could make people feel comfortable acting on really dangerous biases. I think that is really alarming and it's going to be a very real impact of this. Yeah.
Carol: We talked about how gynecologists are 50 different doctors and they have, in some cases, like, ultimate responsibility for a person's wellness or their medical experience. Now they have to call lawyers to determine whether or not they can provide treatments like critical care for people.
Aria: And you shouldn't have to be a ten year old and a rape victim in a state to get the abortion. You should just have to decide that that's what's right for you. And you don't even need to have a condition like endometriosis. But for people with these conditions, it's so serious, the repercussions, I think it's really alarming just worrying about where your next care will come from and what will happen in the next year or two. And I think it's so counterproductive of the idea of this decision is going to increase birth rates or like. This decision is going to make women or make people more likely to have babies. When it's like. If you have a condition like endometriosis. You're probably so worried about pregnancy that you would be disincentivized from being able to follow through with something like that if you weren't able to access proper care and you didn't have options. And I think when it comes to infertility just so common, and unfortunately, it's a symptom of endometriosis, eventually it's gone untreated. I have people who do IVF that is such a hard option to explore without the right to abortion. And so I just think in general, with contraception or with conceiving babies, the decision, it doesn't help anything at all in any capacity. I think it just, in fact, complicates people who have complicated uturn conditions from being able to be able to have a baby if they wanted to.
Carol: Yeah, it's going to accomplish the exact opposite. I don't even know if I can climb inside those heads and determine what it is that they want to accomplish other than my personal opinion is cram their religion down our throats. That's my personal opinion. I don't want to rope anybody else into that, but it's like they just decided we're going to do this because that's why we're here without any forethought. Right.
Aria: And I could sit and speculate about why they did this and why it's so horrible. But I think the big takeaway for me is ultimately what they're not looking at, and what they're not looking at is any sort of evidence based information or any kind of expert advice or testimony that this is really damaging, this isn't making sense. I just think it should be some sort of prerequisite that you understand how the process works before you try to fundamentally change it and how millions of people have to undergo it.
Carol: Yeah, I mean, I think that that's a very simple request. Like, for instance, we had a congressperson or a senator who thought that a person with the uterus could swallow a camera. And that camera, if it can end up in your stomach, then that could also end up in the uterus. And just take a look around is what they said.
Aria: And it's like, okay, I'm sorry, that kind of ridiculous lack of information and bias and confidence to be able to say something like that without Google search and the way that anyone who is genuinely trying to improve any kind of condition or health experience like this would never say anything like that without asking someone, hey, does this make sense? It reads attention to the intention of who's saying the phrase and why they are saying it and really important to pay attention to those things and remember that they're not saying it for any good reason.
Carol: I love how you point out like, the confidence to say something like that. Could you imagine before I four times before I say things, I'm so scared of looking stupid sometimes, you know? Exactly. I totally second guess it. I'm like that's one of the reasons why we always want to have experts on hello, uterus to help explain these things. And then we have people who are just like another one of my favorites is oh no. When a girl is being raped, god made it so that she secretes a certain special liquid that prevents pregnancy.
Aria: It's so like outlandish and it's interesting. It's the only thing I really see coming from RV wait or this sort of catastrophe is hopefully a more organized sense of advocacy towards this is really bad and we've got to really start paying attention to this because as you were saying. It's just so absurd to say something that way. But in a lot of ways the care experienced by people who have uterine conditions just in my experience. From endo people say things like that to you all the time and it is emblematic of the healthcare system. It's not quite as ridiculous as what some politicians might be saying right now, but I know people, doctors have said to me multiple times, oh, your pain will go away when you have your first child, when you give birth. And to me that's just so that's as unbased in any kind of science and truth. And it's just almost as religious sounding and presumptuous. And that is the reality of women's health care in a lot of ways. Like, these are the factors that are deciding it and they're playing out and I think it's just the visibility of it and the impact of it is increasing. And so hopefully that inspires more action.
Carol: Yeah, and hopefully it inspires less hysterectomy. Although, as we say here all the time, we are not anti hysterectomy. We're pro research, and we're pro minimally invasive early intervention, because hysterectomies are not the be all, end all everybody thinks they are. I'm just interested, actually, in your opinions. I'm interested in your opinions on a million things, but just in how hysterectomies are brought to bear is the solution.
Aria: It's so curious. Yeah. I'm so glad you asked about hysterectomy, because it's this kind of like, back pocket treatment card that I think a lot of people who don't have endo and a lot of times people who do have endo assume that they can play. They think, oh, you're just trying all these things. The most unimaginable thing that could happen to you is having your uterus removed. I think that's people presume that's the worst thing that can happen to a woman in a lot of ways, regions like these, and it's just not true, in my opinion. But yeah, no, it's this thing that people assume you kind of can play it as a last resort, and it's not true. It's not a cure, but it's not even a treatment. It doesn't remove the endometriosis. It doesn't remove the lesions. It doesn't take the disease out. And so it's tough because in my mind, I was like, okay, when things get bad enough, I'll just take all the organs out, because that's kind of how it had been phrased to me. And that does not work and would actually probably worsen problems for me, I think, at this point, from what I've understood from my doctors and specialists. And so it's just, like, over utilized as an option and over recommended. And I think it's like 400,000 hysterectomies are performed for endometriosis in the United States every year, and then the average age of hysterectomy is 30. And it's the second most commonly cited reason besides, I think, cancer. And so that is all of those things.
Carol: And fibroids.
Aria: Oh, yeah. My gosh, yes. And fibroids. Yeah. For endo, it's not evidence based to get a hysterectomy as a treatment. It might be the wrong one. Right. Yeah. And I think it's okay. Of course it's okay to have a hysterectomy if you know everything else, that's an option for you and you're making that decision. And it all, I think, comes back to informed consent and patient autonomy, which we used to. We saw a big revolution, I think, in medical care, in the patients learning that they can have more autonomy and make decisions for themselves. And I think that really, the time for that to extend to women is over. Far overdue.
Carol: Absolutely. Yeah. And I kind of wonder, with Roe v. Wade, one of the things that I think about is, is that going to put people off from entering into women's health to practice medicine.
Aria: Yeah, I imagine it will, especially because the doctors in many states are the ones that are penalized, not the pregnant woman undergoing the abortion. And I used to be premed. I'm not anymore. But I had thought a lot about what it would be like to be a doctor, and I imagine it would put you at so much tension with wanting to do your job and not being able to fully help patients if you're good at your job, and that's what you're looking to do. I have friends who are entering the medical field right now and are really trying to navigate this for themselves, where they stand on it and how they would act. And it's nice that institutions are providing some support, but there's only so much you can do, and it's the law, for sure. Yeah. It's just an overwhelming experience right now.
Carol: But we're going to fight. We're going to fight and organize it's like you said. We're going to get better at our jobs because what happened is ludicrous in 2022. It doesn't make any sense in any way, shape or form, no matter where you stand on the issue. It doesn't matter if you say, I'm super prolife for babies. Right. Well, then go, sorry. Say it so I don't, because you're going to be way better at it than I am.
Aria: Nothing matters in these arguments except for the fact that unless they're evidence based and they're focused on improving people's health, the health of the patient and the health of overall the population that they're looking to intervene with, it just doesn't make any sense. Your rationale, it literally does not matter because it's just not evidencebased, and it's not looking to do the job, which is to improve people's lives and improve people's health. And they own that time and time again when they show that they will not do abortions on people who are in critical health conditions and need it for the woman's health and need it for the women's life. It doesn't make any sense.
Carol: Right. Like, you're having a miscarriage. It's a partial miscarriage. The fetus is not going to survive. And so now the brain trust says, let's make sure that they both die, because that seems to line up.
Aria: Yes. I almost am really grateful for social media at this time because I think we're really able to capture how absurd the statements are that are being circulated and used as valid decision making points in very real government rooms and buildings. And it's in discussions. It's really absurd, but it's being documented. And I think about this all the time. I think, first of all, this is not happening to me personally, which is something I have to remember and remind myself, because it feels like it is, and I imagine a lot of people feel that way. But this is happening to everybody and nobody wants this. Yeah, I think that the one thing I hope we can take from it is the momentum of it. This is just we've got to act on it, and we've got to act on it now. And I think when you asked about Roe v wade and if people are going to be disincentivised from entering the healthcare world, I hope that they're more incentivized. I feel personally more powered up about it. I almost might have shied away from something like roe v. Wade and something so directly women's health, I think, at this point in my career. But since it happened, it feels almost like a call to action. I think we need more workforce and more people who are thinking about this in the right way, in the right positions, getting to the right people.
Carol: Yeah, agreed. We have a lot of work to do in med schools and in the way medicine is taught. I feel like we're on this precipice of accelerated advancements in technology, and we can't have progress undone. And we're having progress undone right now, because the reason why roe v. Wade came to my mind that I was thinking about this interview is because we are just at the start of really understanding endometriosis. There have been some theories around endo that are still out there in the world that we know are not accurate. Right. And we also don't know what causes endo. We don't know the mechanism of action. There's so much we don't know. And so my hope is that we can kind of continue to press for more modern methods of research and fund research and things like that.
Aria: Definitely, yeah. I think we kind of do need to just say, like, hey, here's where we are. We're constantly thinking about this very modern problem, and it's modern manifestations with very outdated technology, tools and processes and laws which are not on their side at this moment. I think about how the HIV AIDS movement did their advocacy, because that was just a time of rapid change, and it was not a similar political environment, but it was a tense political climate with stigma and controversy. In terms of HIV AIDS, of course, it's a lot of those different forces working together. So you have people that are willing to advocate for policy and that are keeping an eye on what's going on and who's doing what. And then there's also the people who are at the FDA staging a die in and are saying that people are dying and that we need change and we need to be in the room making decisions. I know part of that advocacy was successful because it came from men. It was an organized campaign by men who were previously at the top of society and were considered to be at the top of society until their lives were threatened with the disease. And I think that now that kind of the whole country is riding this infuriating wave of what's going on with roe v. Wade and what's going on at the Supreme Court. Hopefully we can kind of advocate in a similar way and kind of really use that power to organize and say, hey, women's health is so off and we should fix all of it.
Carol: Yeah, we're going to do that. We are doing that. There's actually no other option because nobody wants to see me if we're not doing that. Yeah, there's no other option. There's just no other path. We need the change. Yeah. It's like a perfect storm because there's the attack on our body autonomy attack on our ability to access modern health care, and then we're also recognizing and learning about theories that we shouldn't have followed. And I just found out about it yesterday, late to the party on this. The Alzheimer's research that was fraudulent. The theories upon which the vast majority of Alzheimer's research over the past at least 16 years were based on what has just been determined to be a fraudulent paper. So the message is this is not meant to scare people or complicate things. It's actually designed to simplify it for you, like taking, I think the things that really stood out to me from our conversation today, go to social media. Don't listen to the doctors that say, don't go to social media. Go to social media and seek out people's experiences and use your own discernment and kind of take it on like Nancy Drew. Like you're trying to figure out a mystery and the mystery happens to personally impact you. So devote some time to it every day and chip away.
Aria: Definitely. Honestly, you've got to fight harder for it than you bought for anything else because that's how serious it is. It's a mystery and you've got to solve it. And I think any doctor that discourages you from seeking out your own information or having more information or wanting to be as empowered with knowledge about the disease as you can be, that should be a red flag. I think when you're at the right doctor who knows a lot about endometriosis or a similar condition or experience, they want you to have the support and information and community that you can really find on social media. So I think that that is really important.
Carol: Yeah, that's a great tip. How open is your physician to considering you a member of your care team? If they don't consider you a member of your own care team and they just see you as a Uterus that walked in the door and they've got 15 minutes to spend with you until they have to get onto their next uterus. So, yeah, step it up, be fast, don't cry about your symptoms. I don't talk for that. You're probably the most knowledgeable person in your care team because you've spent the most time with yourself and your symptoms, and not one other doctor has the capacity to do that. I read something the other day from a doctor who gets it, and she said, the key to the diagnosis is in the expression of the patient's lived experience. So if you're not riveted to their story, then you should go get a different job, because that's the key.
Aria: That's true. It is, unfortunately, constantly, like, diagnosing my friends sometimes, or, like, people I'll meet. I'll hear their symptoms, I'll hear their patterns. And you should check out endometriosis. And then if you find out that they got treated for Assist or something and they found some endo in there, and no one recommended that they see a specialist, and I'm like, I'm going to do it myself.
Carol: I'm so grateful that you do have those conversations, and I think we all need to have the more I find myself having them as well. And we're not doctors, but we are inspired by people's experiences to help show them a path forward. I want to ask you one personal question about a recent surgery that you had. You had surgery for endo. Was this your second surgery in this year?
Aria: So I had my first surgery end of 2019, December 2019. And then I had my second endometriosis surgery January 2022.
Carol: What was the first one?
Aria: The first one was an Ablasion that my gynecologist at home did.
Carol: Was that successful for the expectation of an Ablasian?
Aria: Yes, she ablated the surface level tissue. But as a treatment for endo, no, it was unsuccessful and I would say harmful. It's made my second surgery that I got done the excision. It made that surgery more difficult for the surgeon, and it's made my recovery more difficult as well.
Carol: Wow. Hear that? So if somebody says, get an Ablasion, you need to say no.
Aria: You need to talk to an endometriosis specialist and an expert, because they wouldn't recommend an Ablasian. They would never recommend an intense hormonal therapy like lupron. Those are red flags to look for.
Carol: Did you have the laparoscopic diagnostic surgery, or how did they eventually diagnose you?
Aria: Yeah, I did get diagnosed by laparoscopy sometimes endometriosis lesions can show in some scans, like transpaginal ultrasound, CT or MRI sometimes. But a negative scan does not mean that you don't have the disease. And for me, my scans did not show endometriosis, even though I had the most severe, deeply infiltrating version of it, it just never showed up on any scans. And so getting diagnosed was very difficult. I kept asking my doctors my gynecologist, I kept having pain flare ups or episodes with the Er, and that it was framed. To me, endometriosis is very rare. It's not that likely. So I would have had to do an exploratory laparoscopy. It was hard to schedule it. It wasn't that urgent to the doctors at the time. And so then eventually, I was in India visiting my family, and I'd had a painful air, and I ended up getting an MRI at the hospital there. And a doctor there said, I think you've got endometriosis really comfortable just kind of offhand diagnosing it and was like, Looks like endometriosis, probably endometriosis, could be endometriosis. And that was the first time a doctor had very seriously told me about endometriosis. And I was like, yeah, I think so, too.
Carol: Oh, my gosh.
Aria: When I had that confidence, I just took one doctor anywhere, really, to believe me and think that I was, like, so confident after that that I came back to the States and I said, I'm having the laproscopy now, and I had it within a month. And they found the endo, they misdiagnosed the staging and they didn't get it quite right the first time. But the second surgery, we got it all.
Carol: And so that second surgery. So that's the surgery that you should be aiming for. If you've been diagnosed with endometriosis, can you tell us a little bit about what it is?
Aria: Absolutely, yeah. If you've got endometriosis, the gold standard for treatment, the only actual way to treat it is excision surgery. And what happens in an excision is they go in laparoscopically and they cut the disease from the organs at its root. And because it's a progressive disease and the cells kind of grow and we don't know how they grow, it's really important to get it all out at its root from the bottom and take it out in totality. And it's really hard to do that. And it takes advanced training and it's kind of complex, and gynecologists aren't trained to do that. It takes additional surgical training, which is why it's not as commonly practiced, but it's the only way to treat it. And it actually gives me a lot of hope because I hear patients who also had severe versions of the disease, like I did, and after excision, they're like running marathons and they're so happy. And I follow their instagrams and they're like doing what they love every day and they're able to. And that's really inspiring for me, but I didn't think that was an option before I heard about excision.
Carol: Wow. It sounds to me like how it must be for a cancer surgeon with some kind of metastatic, something that's like, going to show up in a variety of areas. And you have to be very great at it.
Aria: You have to be very skilled just with your eye at identifying it and finding it. And then to work with a complex system. I mean, it's not just one organ. Usually it's the whole abdominal cavity that can be affected. And so the organs are sticking together. Sometimes if you've got advanced forms of adhesions, and it's very complex to be able to find the disease in that and safely remove it.
Carol: Yes, safely remove it. Think about the scar tissue. We all know how big our sort of pelvic area is. The uterus is just three inches tall, two inches wide and a half inch thick. There's a lot of other stuff in there. Yeah, there's so much opportunity for things to go awry. It's understandable that doctors want to perform procedures that they feel they are superior at, that they are excellent because they don't want to let anybody down. They want happy patients. Something like this. When you look at 40,000 OBGYNs in the United States and only 150 of them are skilled at this surgery, you can understand why. To some degree. I also think that partly kind of like it's like being a police officer. Look, if you're not up for the challenge, then don't do it, because one in ten people have endometriosis. I mean, unless you want to just deliver babies, that's cool. Then just deliver babies.
Aria: Yeah. And the system is so unaccompanied to that. And a rising tide lifts all boats. You can't pick and choose the version of the disease. You can't care about endometriosis when it's going to affect fertility and not care about it when it's affecting people's quality of life. So you can't go into the field and not want to treat the whole thing. It's just very difficult.
Carol: Yeah, it is. This has been an amazing conversation. I want to ask you to please come back because I also want to talk to you about the cascade of situations that happen in public health when you start to realize how many decisions are made based on money. And there's a lot that I would love to talk to you about, so I hope you'll come back.
Aria: Oh, my gosh, I would be honored to come back. I've had a really great time talking with you about these topics. I loved when you said I had a doctor that gets it, and I'm like, yeah, this is just like you just get it. Sometimes you talk to people about these conversations and they're really complex and they're challenging and yeah. I'm just so glad that you're talking about these issues on the podcast, the public health cascade of events. I love to think about things like that and look at the systems level, but for a while in grad school, I kept wanting my thesis topic to be corruption as a Public Health Crisis, and just kind of like issues in government and issues in the way that society, I guess, engages with health. I think it's really impactful the influences it has on people's day to day health and existence.
Carol: Yeah. Just from weaponizing it to discounting it to restricting it only to those with money, to how our systemic issues in this country creep into what should be an evidence based process. It is all mucked up, for sure, and I can't wait to see where you go with the work that you're doing. And I hope this second surgery was successful.
Aria: Thank you. I think it was. So far. So far, so good. Excellent.
Carol: Well, Aria. Vyas, I can't thank you enough. You heard it. She said that she'll be back, so we're going to make that happen and we're going to take. A quick break and we'll be right back with ending on a high note.
Okay, so I have some good news for you. No, I'm serious. It's really good news. This is actually you can take it to the bank. Good news. Are you ready? Your chance of dying in a sharkrelated fatality is one in 4.3 million. One in 4.3 million. Whereas your chance of dying in a car crash is one in 84. I mean, not that I want to bring us down from our high note there, but you have to have the perspective, right? You have to be able to compare it to something. I mean, like, it's 4.3 million a lot. I don't know. Millions of people are swimming all the time. So, yeah, 4.3 million. That is some good news for people on the east coast of the United States, where it seems these feared beasts, especially feared if you're a seal, are having an extended family reunion just up and down the coast. Up and down the coast. There have been six shark attacks on Long Island. Non fatal. Non fatal, but six. So I guess no, I'm not even going to go and guess about what the percentage of likelihood is that you're attacked. Let's just stick with the ending on a high note. One in 4.3 million fatal shark attack. It's not going to be you. If it's going to be anybody, it's going to be me because I have that kind of luck. So, yeah, just a crazy amount of great white and overall shark activity. It's not just the great whites, because the way the ocean is warming, we've got black tip sharks that are swimming up in the mid Atlantic and north of the mid Atlantic region, and it's just like sharknado out there. Okay. It's like you think about that. It was a line from Jaws which scared the daylights out of me. What is it? We need a bigger boat. No, you don't need a bigger boat. You need more boats. You need boats in quantity. Okay? So according to Christopher Paparo, a Long Island shark expert and the manager of a marine lab at Stony Brook University, some more good news for you. If sharks wanted to eat us, they'd be attacking us a lot more. He goes on to say, sharks aren't mindless machines that eat people. You get the feeling that he really cares for them and that he's like, stop it. Stop calling them mindless eating machines. They're just sharks. But they're scary, man. They really are. I've seen them in the wild. They're totally scary. So anyway, just know that your chances of getting killed by a shark are really slim. To make them even slimmer, we're going to give you some tips to avoid getting munched on by a shark. Don't swim at dawn and dusk when they tend to feed right. Don't do that. Don't be out and about when they're hungry. That's probably a really good idea because you know how when you're hungry you'll eat like anything? It's kind of the same with these guys. Also don't swim in a school of fish or splash around in water with seals. You're kind of getting where we're headed here. It's really important not to look or act like food. Also don't swim when the water is dark and murky because they can't see anything but like a shadow. And your physique could morph into that of seal, like in nature pretty easily in the dark and murky water. So don't do that. Swim in life guarded areas because they're higher than you when you're in the water and so they can see the sharks. Hopefully they're paying attention. Also, don't be like me and swim laps parallel to shore just like a seal does. I had to get told by a lifeguard that was really dumb. I didn't figure that out on my own. In short, basically don't act like food. I figured I was in 6ft of water. I was like, dude, I wasn't that far out. And he was like, it doesn't matter. They'll just come out and nip at your ankle. Do you want that experience? And I'm like, I thought about that for a second and I was like, no. I just want to let all sharks know if you're coming for me, please succeed, okay? Do not bite in this. Don't take a chunk out of my thigh. Just get a hold of my midsection and crack me in half because I do not want to live through a shark attack. I don't want to be one of those people who's like, yeah, bro, I got bitten by a shark. I'm going to tell you my story. I'm like, no, I will actually never leave my house again if I ever get bitten by a shark. So dear sharks, take me. I will sacrifice myself for everyone else so that they can swim in peace. And PS, just stay off shore. And you all just relax. Go have fun with your summer plans and your ocean swimming and your big soirees. And I hope that you're living the best possible life you can no matter what type of Uterine condition you're dealing with. And hopefully some of you aren't dealing with any of them that you just want to be informed. So yay, happy summer. And thank you Angel, for producing this podcast, for making us sound awesome, for taking care of us when we do things like forget to hit record. And then also thank you to the team at Uterinekind who are working many hours as we get very close to being able to show our Uterine kind out to the world, it's going to change the way people experience Uterine health care. And I also want to thank Beauty Heroes for giving us an opportunity to spoil you guys with the most amazing, truly clean curated beauty products that you will ever, ever find. We're going to spoil you with one giveaway a week. So four times a month you could win. And I'm going to do more. I want to do as many as we can do because I'm kind of in it for that. I'm in it for gift giving. I think it's so fun, especially when you're giving out great stuff. So thank you for listening. Have a great week. Be well, be cool, be kind, and come back next week for another episode of Hello Uterus.
Angel: The Hello Uterus podcast is for informational use only. The content shared here is to not be used to diagnose or treat any medical condition. Please speak with a physician about your health condition and call 911 if it's an emergency. And thank you, Uterine kind for listening. Bye.