Ep 41: Navigating Women's Health: A Journey of Self-Discovery and Advocacy Around Endometriosis with Dr. Ana Laura Arteaga-Biggs

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     Dr. Anna, Laura Ortega bigs is a psychologist out in California. And I interviewed her on episode six of this podcast, where we talked a bit about, um, just finding empowerment in your medical care and in your social circles. Especially as you're going through really difficult times. And last time that Dr. Anna was on the podcast. She was going through some health issues. There was a lot of confusion around what she was going through. And I know that a lot of us experienced that same situation. So Dr. Anna came back and we recorded an episode honestly, a few months ago at this point, but, um, it's been a while since I've been able to edit and stay consistent with uploading podcasts. So. I am uploading her episode today. Um, and yesterday we actually. Recapped again. Um, because in this whole episode, you'll hear that she's talking to me. Pre-surgery. And then she gave a kind of 15, 20 minute, um, update post-surgery. So I'm excited for this episode because we haven't really done something like this before we talk a lot about kind of stories, personal stories, and. Um, you get to hear from therapists of all different kinds and what they've been through, but this one is really in real time. Um so dr anna has been incredibly gracious in sharing her real-time story with us and i hope that you all get a lot out of it

    Also, I want it to be really clear here. We both wanted to be clear. That while we are using the term women, we really are talking about anybody who identifies in any minority group. Um, historically, you know, history, we'll talk about men, women, men, women, but just keep in mind that anyone who is gay, lesbian, transgender. Anything other than CIS hetero white basically was lumped into. In the history, they were just completely left out, um, or lumped into this group called women. Uh, so we use the term women here, but this really is inclusive to anyone who has any identity frame.  The Chronic Illness Therapist Podcast is meant to be a place where people with chronic illnesses can come to feel, heard, seen, and safe. While listening to mental health therapists and other medical professionals talk about the realities of treating difficult conditions, this might be a new concept for you, one in which you never have to worry about someone inferring that it's all in your head.

    We dive deep into the human side of treating complex medical conditions and help you find professionals that leave you feeling hopeful for the future. I hope you love what you learn here, and please consider leaving a review or sharing this podcast with someone you love this podcast. Is meant for educational purposes only.

    For specific questions related to your unique circumstances, please contact a licensed medical professional in your state of residence.

    I am really glad to see you here. I'm curious, um, what prompted you to wanna talk today? Like was there something specific on your mind that you wanted to go into?

    Yeah, so I, uh, since we last spoke, which I just, I re-listened to that. I think that was January 5th, 2021. Does that sound, or was it 2022?

    2022,

    yes. 2022. So, so much has happened since then. And I was recognizing that when I was listening back to, to our first podcast. I had really minimized unknowingly, I think, and really invalidated what was going on for me medically and with my own things that were, that I was sort of navigating. And I think, um, a lot of that has to do with just being gaslighted by multiple, um, medical professionals.

    And I've since come to learn a lot more about what I've been living with and, and dealing with for so many years of my life. And I'm becoming even more passionate about it. Um, and I, I want to provide good information so that people can get quality care.

    Yeah. I, I remember, um, also last time we talked, you were experiencing I think a lot of grief, a lot of death in your family. Mm-hmm. And, um, it was, yes. Yeah. I would imagine all of this is connected, right?

    Because nothing lives in isolation.

    Sure. I mean, I haven't necessarily recently connected all that. 'cause I think when we were speaking, it was just still, you know, the height of, of Covid. And, um, I also, at that moment in time too, I was, I was pretty deeply in. Experiencing postpartum depression with my second child.

    And I think there was just so much happening and I was probably a little bit removed from what I was experiencing emotionally. I was really just trying to survive, which I think I've probably been trying to do for a really long time. And I think I've gotten good at that and didn't really recognize that within myself.

    I, I can see it and identify it so easily and in the work that I do with my patients, and particularly within the, you know, population of chronically, medically ill women, I think that they're very good. We are very good at, um, presenting like we're doing a lot better than we are. And so, yeah, I think there's just so many updates to what's happening with me and I felt like.

    It warranted a conversation around women's health and the way that it's navigated and with particular focus today on endometriosis, um, and adenomyosis. But I think more so the endometriosis part of things, just because there's much more that can be done there than there is for adenomyosis, which is also obviously a women's health issue.

    Um, that needs to be discussed as well. But there's a lot to happen for me in the next 10 days, and so I just really wanted to connect with you and connect with women that might be going through similar things or looking for answers. Uh, and I want it to be one place that they can find evidence-based information.

    Um, Maybe just process some of the, the grief and the rage that accompanies these really frustrating diagnoses.

    I'm so glad you brought up rage and I think we definitely need to talk about that later on in this episode. But first, can you talk a little bit about, you know, endo and I don't know, and how.

    Maybe some of your gaslighting experience and how you ended up, ended up getting the diagnosis and that kind of, that part of

    your journey. Yes. Uh, so I feel like whenever you have probably, I think anything in women's health, but any of these sort of, you know, pelvic related diseases that, uh, you could probably spend eight hours talking about all of the, the, you know, care or just your symptoms and when you first noticed.

    And I think for me it's been a lot of going back and realizing that things that I didn't realize were connected were absolutely connected. So what I'll say is that, uh, when I first, you know, got my period at 13, I mean, I think a lot of the signs and symptoms were there, but I just didn't. Know what I didn't know.

    Um, and I wasn't, I mean, I, I really love my family, but I did grow up in a house where I think, you know, up until recently, like vagina was a bad word, or, you know, it's something that my family didn't, I mean, they still kind of cringe when I forcefully make them say it, you know? Um, and vulva and these kinds of things.

    I mean, I didn't even know that word, I think until later into adulthood, and that's just insane to me. But, um, it just wasn't, I didn't, I don't think that it felt really comfortable for me to talk about these things and ask these questions. Not that my family isn't really safe and loving and supportive, but maybe around these kinds of things.

    It just wasn't really the culture of my, my home. And so my periods,

    yeah, I just wanted to add in there, you know, when things are unknown, they're unsafe. And so it sounds like, yeah, you've got a supportive family, they loved you, but if we don't even have the language to talk about our body parts, then the whole thing feels unsafe and we just try to like, kind of stay at an arm's distance from it.

    Sure, yeah. And if you don't, I mean, if it's not really being discussed, you don't know what is is normal or healthy, you know, and at school, I mean, we, you don't, I don't even have to go into the specifics to indicate that the education around these things at school, especially back then, um, I mean, I'm sure even now, but when I was 13 it was just not what it needed to be.

    Um, Sadly, I imagine that's probably still the case, and especially depending on what state you live in. I'm in California, um, which is probably one of the more progressive states in that department, but even still, I imagine we're just not where we need to be. Um, so yeah, my periods were, they were quite, uh, intense.

    They were, they would last about two weeks long. The bleeding was really, really, um, excessive and I didn't know that my cramps were really painful and it just felt like, oh, this is just how it goes. This is part of it. And around age 14 or so, I started experiencing pain in my left side, which I now understand was my ovary.

    And I was feeling myself ovulate, which I've since learned is actually not normal. Um, it's, it's really abnormal to be able to feel yourself ovulate. But I can tell you the second it starts happening, I could tell you when I'm ovulating, you know, it's like that intense, I'm that aware of my body and I was feeling all this pain.

    Um, and so, and, and

    just 'cause I take a somatic approach, my curiosity is around some of the sensations there I'm curious for is, so people can kind of get an understanding for themselves too. What kind of sensations did you feel that you now know weren't normal?

    Just a sharp pain right where, near where my ovary is, which I think when I was 13, 14, I didn't really even know what an ovary was or exactly where I even was in my body or that, you know, I wasn't supposed to feel that.

    And when I went to the doctor, she just said, oh, That's just, she's just probably ovulating. She's fine. And that kind of started, that was my first experience with a gynecologist. I remember being very anxious. I'm not, um, comfortable with nudity, um, in general. And that, again, that really comes from the, the modest sort of culture I was raised in, um, with my family.

    And so, uh, I think all of that was just, it was scary for me to explore those things. And it made me really uncomfortable with doctors and those kinds of appointments. And I think that also led to a pattern of avoidance where if I needed to, to navigate something that was happening in my body, I would avoid it at all costs because I was pretty fearful of procedures and doctors and pain.

    Um, And it was accompanied with a lot of anxiety, which I think would exacerbate the treatment that I would receive because then it was so easy for them to go to. She's just a really anxious person. And all of this is just anxiety, which is, you know, there's a lot of historical implications for that for women around hysteria and, um, that we aren't taken seriously and our pain isn't taken seriously, especially if we're women of color and particularly black women, um, do not, you know, they're just not taken seriously.

    And that leads to a lot of really dangerous, uh, complications, um, including death, which is. Just terrible. Uh, so essentially my story kind of continues where this was kind of my life for most of, you know, my adolescence, you know, young adulthood. And it really wasn't until I became a post-doctoral fellow, um, at a hospital in Los Angeles, uh, which was really eyeopening for me.

    And it made me very aware of what was happening in my own body. And I was exposed to diagnoses that I had never really heard before. Maybe I had heard, but I just hadn't really registered, um, that it was applicable to me. And so as the, you know, the. The, the psychological consultant in behavioral medicine and this particular hospital, which is a hospital that, you know, it's, it's poverty medicine.

    So these are, these are the population that, that served. There was predominantly monolingual, undocumented Spanish speakers. And I, I'm a native Spanish speaker. I'm from Argentina originally. I'm an immigrant, so I speak Spanish. So I was able to provide those services, um, in, in their native language. And, um, what I saw horrified me, these women were in so much pain and essentially what they were being told is really, there's nothing else we can do for you.

    And there was an annoyance, um, which I, I now also really understand as I think, an exasperation on the medical side, because these doctors. When they learn about endometriosis, their medical textbooks have one sentence about endometriosis and it's not even accurate. And so they're not even learning about these things, which impact one out of 10 women that we know of so far.

    Um, I'm sure there are more. I, I, well, I'm, I shouldn't say that with such certainty, but I would imagine there are more cases than what we know about worldwide. Um, it has been largely sort of seen as a white woman's diagnosis. Um, and that's because that's who's getting care for it. Um, and that's who's making noise.

    And when white women make noise about things, then people tend to listen a little bit better. But, um, you know, I was watching women. In so much pain. So exasperated basically begging me for help, and they were being accused of drug seeking by a lot of these doctors or, or the doctors if they weren't accusing them of that and they were trying to be empathic and helpful, they just didn't know what else to do for them.

    And the problem was, is these women weren't receiving what they needed, which was excision of their endometriosis. They were either probably getting ablation or being put on things like Lupron, which just creates an even bigger problem. Um, and, and creates many new and, and, and worse problems. Um, so, so that was sort of my intro to this world, and I got to see things behind the scenes.

    And it was the first time that I realized I don't trust the medical community the way that I grew up thinking that I should. The other piece of this that complicated things for me is that when I was a fellow, I was required to wear a white lab coat when I was in the hospital. The way that people treated me with so much respect when I was wearing this stupid coat, when I didn't deserve it.

    I was, I mean, I was just a young fellow. I mean, I was smart and I knew some things, but I really didn't know much or a lot, and definitely didn't, it didn't warrant the level of respect that people gave me. Uh, and that was really powerful for me. 'cause it showed me, you know, now I'm being called doctor for the first time and I'm wearing this coat.

    And it, it makes people feel like I know what I'm talking about, or I should, or that, that I have some sort of authority and that I should be listened to without being questioned. And particularly from cultures where being submissive or, you know, being, respecting people in positions of power, particularly, you know, in this country.

    Um, It, it was really shocking to me, and it has stayed with me and has allowed me to be mindful of when I might be sort of bewitched by somebody with a fancy letters on the, you know, behind their name or wearing these tools or these, you know, coats. And it makes you feel like you are in the company of someone that really is an expert and perhaps they're not.

    And I've now since learned that most, most gynecologists don't know, they're not only not experts, but they really know less than many of most or many of their patients do about what's happening inside their bodies. Um, and that is,

    I don't know, I don't know what word I think rage inducing is the right word. I probably, there's a lot of different words you could use to describe what that makes me feel, but, um,

    Why do you think this is, why do we know, other than the fact that we're living a lot of the, you know, we're living with these experiences, but

    I think it's a systemic issue. I mean, I think that the system is set up for research to predominantly focus on men, um, and men's health. And that's why there's so many solutions for so many men of men's ailments.

    And then those things are being used on women. And it doesn't work for us because we have different hormones. We have different, you know, things in our bodies. And I'm clearly not a medical doctor, so I won't, you know, I won't dive into something that I, I also don't know anything about. But something that has, you know, that stayed with me is as a psychologist, I.

    I know a lot of things about certain areas of psychology and then there's a lot of areas about psychology that you should definitely not come see me for because I don't know what I'm doing. And if somebody does come to me or calls me and says, I'd love to work with you, here's the problem that I'm having, and I know that I don't know enough about that, or I know someone who knows a lot more and would be a better fit, then ethically it is my job to say, I would love to work with you, but I think there's a better fit for you.

    Or, you know what? That's outside of the scope of my practice. I'm not an expert in that, but hey, there's somebody just, you know, down the street here who's a colleague of mine and they're fantastic and they know a lot about that thing or these issues. Right? And so, um, I think that I hearing too, like

    not even just about spending your time, learning more textbook knowledge, but also just making connections.

    You know, networking in a way that's, that's like a human, a human, um, human connections, right?

    Well, and advocacy. And I mean, there's so, there's so much that needs to be done. I mean, it's exhausting to really think about, and I certainly am not purporting to have the answers to this, that I know what needs to be done.

    I just know it's, this isn't working and doctors are failing us. The system's failing us, insurance fails us. There's so many, uh, intersections here between, you know, racism, sexism, misogyny, um, You know, just socioeconomic status. I mean, when I think about my case, my case is really not unique. It's not special.

    I'm not, my case isn't interesting or different than the rest of the cases in this. If anything, it's probably less dramatic and intense than so many others. And I have privilege and access to, you know, so many resources and, you know, money as needed. And, um, my level of education is really high. And even with that, I still got screwed by a system.

    Um, And so it makes me think, wow, if I come into these appointments with all of this knowledge, with all of this access to, you know, colleagues who are medical doctors, training in all these areas, um, I can advocate for myself. You know, I am also not shy about using my voice. I'm not shy about being confrontational.

    And still this happened to me, and I know we haven't even sort of completed kind of my story in terms of my journey of, of my diagnosis. But, um, it, it's alarming to me and I feel like it has lit a fire in me to be hold a megaphone as often as I can. And that's also part of why I really wanted to do this podcast today and just check back in with you because I feel like these conversations need to be accessible to as many people as possible.

    Yeah. Yeah, I agree.

    I'm, I'm really glad you're feeling up for talking about it and that you are here talking about it. And I'm curious, yeah. What, what is kind of the next part of your journey and maybe some of the things that went right and went wrong, uh, to get there?

    Yeah, essentially at that time, I became really attuned to what was happening. I remember speaking to my supervisor, um, my supervisor was a very unhealthy person emotionally. Um, it was actually fairly abusive, uh, to, to me and to other fellows, um, sort of historically.

    I kind of learned that later. But she, she actually was kind of the start of that minimization where she sort of said, oh, it's really common as a fellow here to start thinking that you have things in your body, um, that are going wrong. And it's really just kind of in your head. So that was the first time that sort of put it in my mind of like, oh, maybe I am just sort of a little bit of a hypochondriac.

    Um, which in fairness has been sort of the running narrative about me since I was a small child. I think I was sort of set up for people to not believe that I was really in a lot of pain or my pain was seen as being experienced in a way that was excessive and probably not. Um, not, what's the word? Uh, Compatible with what was happening.

    Uh, and so I think I also learned to deny a bit of my own pain and see myself as just fearful. Um, and I think that it was a little bit of both and right, that I was fearful and I did have more anxiety about medical things. And we sort of talked about that in the first podcast that I hadn't seen myself as someone that could even really listen to hearing about other people's pain because I would feel it so intensely from kind of like an, you know, an empath, uh, sort of way of, of feeling things, the way people feel them.

    Um,

    I really wanna, yeah, no, I think this is so important because, um, so I grew up with my mom. Everyone called her hypochondriac my whole life, and I, you know, I have had had a lot of anger towards my mom for being this way. So when I started to feel pain in my own body, I was like, oh no.

    Like this is, this is in my head. Like I'm turning out to be just like her. Like, and now I realize that. Those of us who are called hypochondriac have an extra sensitivity to pain because there is something genuinely happening inside of our body. It doesn't necessarily mean like, you know, you're, you absolutely have some kind of chronic illness, but we have a, just a heightened sensitivity to pain.

    Um, and then when you have a society that's like, no, that wasn't true. That's not what's happening. Or, you know, no, this isn't true, or, and they just minimize your experience. Our fear centers and our brains say, no one's listening, so we have to shoot even higher. And so it's just, when I work with parents, I'm always trying to really bring home the point that validating their pain is always going to be the best solution.

    It doesn't matter if you think it's real. It doesn't matter what you think about it at all. If you deny it, you actually will make it worse.

    Absolutely. Well, and pain in our bodies is, it's a signal that something's wrong. So when your body's in pain, it's telling you, Hey, something isn't right here and. I think pain is one of those things that it really is felt differently by different people and it also changes as you experience different levels of pain, right?

    And so after having, you know, going through childbirth two times, um, I had really long labors, they were like 30 plus hours and I pushed for four hours, um, with both babies. So I now think I have a, a different pain tolerance than I did, you know, a few years ago. Um, or a different experience of what my body can handle.

    Um, and so yeah, pain, it's all relative, right? I mean, I remember my brother-in-law got in a car crash, or I'm sorry, he was hit by a car and when he got to the hospital they asked him what his pain was and he said a four. And I remember he was really celebrated for that of like, wow, what high pain tolerance.

    And I remember really rejecting that and saying, why are we. Celebrating that 'cause a, was he possibly minimizing his pain because of, you know, toxic masculinity, or, or does he just have a different tolerance of pain and, and does it, is it. Should it be celebrated or should it just be sort of this neutral, like, oh, okay, you're a four and for you that means this.

    And if you were at a seven, that would mean that somebody was cutting off your head or something. I don't know. I mean, it's just, it's such a strange system to rate pain that way. I always tell doctors I'm at an 11, like one out of 10. I always just add a number to the chart. I'm like, it's an 11, just, you know, it's really high.

    Um,

    yeah, the last episode that just aired before this last Friday was called The Pain Scales Bullshit. And I had Nadia Klons on, and we just talked about that the whole time. And I did a talk, uh, at a community. It was a community mental health agency and, but they have an interdisciplinary team and a hospital and very much lower socioeconomic status.

    And when I brought up the pain scale, like. Shouldn't even be used. I got so much pushback by the doctors in the room. Like they, they were not happy with me and that's okay. I'm, I'm okay with that. But, um, yeah, it's just really, it is like, well we want, you know, we have, we have to use it for, um, to see like the start and the end, like progression of treatment and I'm like, I didn't, I didn't argue too much 'cause I was a speaker and I just felt, and it was through Zoom and I couldn't even see their faces.

    So it was just like a weird kind of talk. But my point to my comeback to that is like how pain is up and down. There is no, like at the start of treatment, I'm a level 11 and now I'm a level two. So all good, good to go. Like it just doesn't work that way.

    Correct. It's, yeah. And sometimes it's hard. It is a complicated, and it's a, it is a problematic system, I think.

    Um, there's probably better ways of, of doing that, but I don't, I'm remember, I'm trying to remember where we were at as far as, oh, I think I was just sort of telling you about, um, my pain kind of being minimized or people sort of thinking, oh, she's a little bit of a hypochondriac. So I think they didn't think things were as serious with me because I, they felt like I tended to exaggerate anyways and then things would just be fine.

    And so I started, at this point, I was about 20, let's see, how old was I? Like 29, 30, I wanna say right in that ballpark. And, um, I. I started going to, I started being more proactive and I went to, to a, a gynecologist up in Long Beach and that was recommended. And I started telling them, you know, I have all this pain and um, you know, I can't do this and I can't do normal things.

    You know, like sex was, is extremely painful for me to the point of just, I mean, I have so much avoidance about it 'cause it's just, why would you wanna do something that hurts so much when it's not really supposed to hurt? Um, and so I would just be told, you just need to relax. You need to just maybe have a glass of wine.

    Like alcohol was really pushed, I feel like, in these settings of like, just drink a little and you'll be, you know, more tolerant to, to things. And, um, you're probably in pain because. I know. And so I just thought, okay, what the heck? Something's wrong with me. You know, like something's wrong with me. Maybe just from a psychological standpoint 'cause they're looking at me and they're, they're telling me everything's fine.

    Um, and that kind of persisted. And then I got married and I was trying to have a baby and I couldn't get pregnant and it didn't really fit with the narrative of the rest of my family's sort of pregnancy stories. It seemed like, you know, my grandmother had five children, my mom had the two of us pretty easily.

    Granted she was a lot younger, um, than I was when I started trying. But still, it just felt like, you know, my sister, everybody was able to get pregnant fairly easily and I just, I wasn't getting pregnant and I was worried. And so I went to a doctor here in San Diego. I had moved back to San Diego at this point, and this was the first doctor that listened to me.

    So I don't wanna celebrate her too much because the story after that does not take a good turn. But, but I will say, Getting the diagnosis was such a, a freeing, liberating feeling. Um, I remember just feeling so much relief. Um, and I hear that all the time. I do hear that with, with, you know, the women that I work with, it's just a lot of them spend eight to 10 years just searching for a diagnosis and they're told it's just anxiety, it's just psychological for all these years.

    And then they finally get that diagnosis and it's so, such a relief, even though it should be terrifying in a lot of ways too, because now you're learning that something is seriously wrong and yet it's, it's crazy to me how much relief comes from the knowing. Um, and so that happened for me. She did a laparoscopy, she found endometriosis, uh, which I had suspected.

    So it felt nice to know, Hey, I'm not, you know, crazy and I know my body and I was right. So, At that point, she also told me, you know, your uterus looks beautiful. Your fallopian tubes are clear, so you should be able to get pregnant. Um, you just have a little bit of endo in this area. It's not that bad. I didn't touch it because if I touch it, it makes your infertility become a, you know, it can make you infertile.

    Um, and so, okay, so I thought, okay, well, she listened to me. What a great doctor, you know, so I believed her. So I went, continued trying to get pregnant, trying, trying, trying. Nothing. Was working. Spent a good two years in that boat. I finally went to a reproductive endocrinologist and continued there. I went through four iis, um, which is intrauterine inseminations.

    Those did not work at that point. My re uh, he suspected adenomyosis. He knew I had endo, but he didn't do much about that because my doc, my other doc who's in the same building as him, had already confirmed it and kind of said, it's fine. It's not a big deal. So he looked on a transvaginal ultrasound and found something suspicious, which was, um, not common.

    Usually you don't really pick that up on a transvaginal ultrasound. So it was good on him. Another sort of good moment. I can sort of appreciate that he found this 'cause I don't know that it would've been found otherwise. He sent me for an m r i and it was confirmed, you know, to the point that it can be because with adenomyosis really the only way you can fully confirm it is when you remove the uterus and biopsy it to confirm.

    Right. And so, but essentially it's, it's, at this point it's been, it's triple sort of confirmed. Yes. You definitely have this. Um, he's, he noticed my uterus was a lot larger than it should be. Um, it was also, it is also retroverted, which. You'll hear that that's common and that, you know, it's kind of like a, a, an inmy or an Audi belly button, which I've since learned is not true.

    If you have a retroverted uterus, that's often a sign that something's wrong. Um, often it's an endometriosis related thing where it's being pulled back and tipped back, or, or it could be another thing like fibroids or something. Um, and so, so that, that's, you know, a new, it's sort of a new development that I didn't know.

    Um, and at that point I just assumed, well, that's why I couldn't get pregnant. Um, and, and that could very well have also been the problem. Um, I did, I went to I V F at that point, and I was, I was very lucky that both times with both babies, it worked on the first transfer and I was able to, you know, get pregnant and, and carry both babies to term and, and have sort of, you know, healthy babies.

    So that part ended well for me. Um, Then after that I started doing a ton of research. That's where I found Nancy's nook, um, on Facebook. I'm no longer on Facebook, but, um, I started to learn a lot about endometriosis and found that everything that I'd been learning online was utter garbage. And then I started to realize, hey, this gynecologist that did this surgery didn't do it right.

    And thankfully she didn't touch it. 'cause if she had, she would've used ablation and that would not have helped me at all. Um, so this is why the story gets a little complic. Sorry.

    Yeah. Just real quick, do you know, and it's okay if you don't know, 'cause again, you're, you're not a, a doctor, but from your experience, um, what would've.

    It, was there something that she could have used that, that wasn't ablation, that would've helped or not touching it was what? Like, yeah. What was

    So, I mean, so the, okay, the, the answer's a little complicated because yes, there is, but it wouldn't be good for her to do it 'cause she doesn't know what she's doing.

    So you only wanna go to a doctor that actually knows how to do this surgery and the last time I checked and somebody can, can correct me. And if people write comments on these, I don't know. Um, I welcome that feedback. 'cause I, I'm just know what I know and to the best of my ability, and I'm sure some of this is incorrect, so I, I welcome being told that.

    But, uh, last I checked, there's roughly 50 to a hundred doctors worldwide that can actually do this surgery properly. It's called excision surgery. It's done, um, usually robotically. And, um, it's, it takes a really special. Sort of trained eye to see the adhesions because some of these adhesions are not obvious.

    They're different colors. Some are black, some are white. Some are really, really subtle, that if you don't know this disease well enough, then you would completely miss it, which is what happened in my case. So, So what she should have done, if she knew what she was doing was do excision surgery while she did the laparoscopy.

    So, and the way I just said that is confusing. Excision surgery is done laparoscopy. Um, but my point was that often women that have this, you sort of get the diagnosis the day you get the excision surgery. So it's sort of weird because you can, you can somewhat in certain cases, pick it up via a transvaginal ultrasound, um, or other means, but it's, you often can miss it that way or you can't see the full picture.

    So the really, the only way to, to really properly diagnose it and sort of the gold standard is to, to diagnose it via laparoscopy. And if you do that with a trained excision surgeon, they can both do that and then remove it in the same day, which is more beneficial 'cause then you're not going through multiple surgeries.

    Because essentially what she did is just inflame the endo. She went in there, she caused a ton of inflammation and pain, and then I was worse off afterwards, which I didn't know that. So what I've since come to learn is that, you know, once, once my, my, I have a almost two year old and an almost four year old, and so my goal was, you know, once I can kind of come up for air, I'm going to take care of my body and go, you know, deal with this, which I knew was going to be excision, surgery for the endo, and then a full hysterectomy for the adenomyosis and I'm done having trouble.

    That's actually really important I think, to maybe pause on like, That you made this decision to allow yourself to wait until maybe the timing was a little bit better, because I think a part of like pain and fear and some of the mental health side of this stuff is like we can get into such fight or flight.

    And I'm sure, I mean you can talk more about your experience around that, but I think too, the ability to pause, even though I'm sure you still had a lot of fear during that, but to pause and to say like, This is what's best for me in this moment. This will be, what's this other thing will be, what's best for me in the next moment?

    And to kind of take it step by step is, is how we get through stuff like this. And that's what I preach on this podcast and that's what I teach all my clients. And so I just wanted to kind of really illuminate that for a second.

    Yeah. And it, it's, uh, and it's tricky in my case because now what I've learned is that I needed emergency care.

    Back in 2016 when I first got the first surgery. And so, so it's like really?

    You didn't need to pause at all. You really needed it back then. Yes. But the fact is you didn't have a doctor who knew or could educate you. You didn't know. And so then you had

    no completely wrong her whole, her whole. You know, thing was that when you get pregnant, it'll cure it.

    You just need to get pregnant, which is a really common, it's like the two things you'll hear, or three is you need to relax, you need to drink a little and just get pregnant. And you know, and fertility is always the number one priority for doctors. They don't listen to women. There's young women that want full hysterectomies for whatever they might, whether it's fibroids or other things, that they have adenomyosis.

    And they're, they're not given that as an option because people sort of think, oh, you'll change your mind because they think that everyone just wants to have a baby. And the truth is, a lot of people don't. And that's okay. And people should be able to make decisions about their own bodies. Um, and they're not, in my case, I, fertility was important for me.

    So clearly, like I wasn't going to have a hysterectomy for the adenomyosis because I was being told, yeah, you'll, you'll be able to safely carry a baby with this and yeah, you'll wanna remove it later. Um, and then the flip side happens where, With endometriosis, doctors think I'll just remove the uterus and all the things.

    And that's actually not, it's not what should be done. Um, it actually does not remove the endo. And, um, there are certain cases where that is, uh, an acceptable protocol to use. But that's actually quite rare with endo, with adenomyosis, it's the only option with certain fibroids. It's also the only option currently, which also is not okay because we should have more options.

    But the research isn't being done to provide us with alternative, you know, things that will. That will cure us or help us or ease the pain or, you know, be safe. And so it's like we're just removing all these organs, which has a lot of implications and leads to a lot of other complications and, and more things to have to deal with.

    Um, but in the case of Endo, uh, if your doctor's saying, oh, we'll just remove all these organs, you should probably run unless you have a really specific case that is so egregious. You know, Lena Dunham being one of those people. Um, she's a, a, a writer, producer, an actress, um, for those who haven't heard of her.

    And she, she's also kind of one of the, I read her book and then that's when I sort of saw a lot of myself in her story. Um, But her case was, was particularly intense, uh, and different than mine in so many ways. But anyhow, I'm going on a tangent, but I wanna be specific about this because I do, I hear of, I've had friends who have had hysterectomies for endo, and it absolutely kills me because I know that they still have endo and now they had all these organs removed and they're dealing with hormone replacement therapy and all these things, um, which they didn't need to go through, especially at such a young age.

    Um, so, okay, so back to, I decide to get care. I, I prioritize. Myself again, that was kind of my big goal for, I turned 39 and now I'm 40, and I decided, you know, this is what, what I'm gonna do. So in doing my research, I found, you know, there's only about 50 somewhere to between 50 to a hundred of these, what, what they're called, sort of nook surgeons.

    And that comes from Nancy's nook on Facebook. So these are sort of approved surgeons that have shown they actually do a really good job. They have a good success rate or high success rate at removing the disease. Um, where women either never need to go back for another surgery or in some cases maybe it grows back, but, um, they, you know, are having living normal happy lives again, pain-free lives.

    And so I found, um, there were, there were at, at the time that I looked, there were none in San Diego. There's one or two maybe in LA and really only one that I would recommend up in San Francisco. There are two listed, but one of them I, I would not recommend, and I will not say their name because I don't wanna be sued, but, um, Anyhow.

    Uh, and would

    you find these lists, like of the doctors worldwide

    there? It's on Nancy's Nook. It's a group on Facebook that you have to join. Um, okay. There are some problematic things about Nancy's nook, so I can't give it my full, you know, I fully a hundred percent recommend it, but I will say that currently it is one of the few places where you can find evidence-based information and you can find doctors that actually really do have expertise in treating this disease and removing it surgically, um, via excision surgery.

    So, uh, there are some other political things I think happening there, um, that I guess that's, uh, to be expected in some ways. Um, so. There's certain things I, uh, I'm being careful as you can tell, and I think I sort of have to be, but, so I'll just sort of keep it there. But I'd say, uh, take it with a grain of salt.

    But that is one, one area that I think you can find, uh, valuable information to help you make informed decisions about your care and so that you can go into these appointments ready to advocate for yourself and ask the proper questions you need to ask. And, um, so those kinds of things. Um,

    yeah, I mean, it's something we talk about too frequently here is like, unfortunately, unfortunately, we have to be our own researcher, our own doctor, sometimes our own, we want evidence-based care.

    We want the best care possible, but that does take sifting through some good and not so good information. So a lot of these tools are wonderful in, in the aid, in that search, the aid in that search. But, Don't, don't ever take anything. You know, your doctor did not have all the accurate information. A Facebook group is certainly not gonna have every single accurate piece of information.

    So it really, unfortunately, does take a lot of discernment, which is again, where I think we come in on the mental health side. How do we help you discern this in a way that allows you to trust your, your care team?

    Mm-hmm. Absolutely. So I did find a surgeon in Beverly Hills. Um, I did go to her. Um, she does not accept insurance, so everything was out of pocket.

    So again, I'm in a small population of people that was able to do that, and I have a lot of feelings about that. Um, the consultation went very well. I, I cried my entire drive home, but it was like, Tears of relief, um, and gratitude really because I felt so validated. Essentially, she saw that all my organs were being pushed to the left side of my body.

    Um, she also discovered another disease that is, is really com It's a common comorbidity with endo. It's called sibo, um, which stands for small intestinal bacterial overgrowth. And I really don't understand a lot about it, so I won't say more than that. But it really explained a lot of the symptoms that I was having with like bowel movements and things like that, which is really common with, um, People who suffer from endometriosis.

    So yeah, I,

    I had sibo Or did you, have you since recovered from that portion of it?

    Uh, I mean, so I was, so I, I saw a gastroenterologist out of pocket, um, also in Beverly Hills who gave me the prescription, the antibiotics that you need to take, which is Xifaxan and Neomycin. Those can be difficult. It's difficult often to get coverage for those.

    If you don't get covered, they can cost you up to $3,000. Um, mine got covered thankfully because this particular doctor is skilled at getting them covered by insurance. Um, but others I think are not, and SIBO, like Endo is a little bit of a. Um, it's a disease that is controversial and that it's mismanaged and misunderstood, and I've since learned that.

    So I don't really know if I've been, the way I understood it from my gastroenterologist is that I'll probably every six months or so have to redo the two week course of antibiotics, which by the way, destroyed me. It made me really sick. Um, and it's hard for me to know if I'm better because I still have the endo in my body, so I don't really know what's what.

    Um, but we will see after my surgery and I will let you know if I feel better. Um, but yeah, there's like a special diet that, you know, can go with that. The, what's it called? FODMAP diet. Um, I'm still learning a lot about it. And, uh, I'm, I think I'm less invested in caring about that one right now because I'm so honed in on these other things that I have going on.

    But I think sibo, it's something I'll become more intimate with in the, in the near future when I have time to care about it more, I guess. Uh, but I did do antibiotics in preparation for the surgery because when I have the hysterectomy, essentially, you know, I'm losing my cervix and everything, and they're creating what's called the vaginal cuff.

    So if there's any straining involved when I'm, you know, going to the bathroom, it can actually open the sutures and create, you know, infection and a lot of problems for me. So that scared me enough to say like, all right, just let me take care of this. Um, and then we'll deal with that later. Um,

    again, yeah.

    What I'm appreciating the most about how you're explaining your story is this, like one thing at a time, which of course when you're in the mi the midst of it, I'm sure it doesn't quite feel like. You're handling it all that well, we never really feel like we do. But the one, like the way you're explaining it to me, again, it just sounds very like, okay, put my head down and do this part, and then I'm gonna do this part, and then I'm gonna do this part.

    And you're figuring it out as you go, but um, you're allowing for some of that separation 'cause it can just feel so foggy and so confusing. There's this swirling of stuff in your head, and we can get paralyzed with fear. I know I've been in that space where it's like, I don't know what to do, so I'm gonna do nothing.

    Um, so yeah, I don't know if you have any thoughts about that, but

    Yeah, I mean, I think that there can be, I definitely feel overwhelmed, especially trying to do my career and take care of two young children and, you know, take care of the house and everything. It's, it is overwhelming. Uh, but I think that I've just, yeah, I just kind of had to keep moving.

    Um, because the, the, well, the story essentially continues with this surgeon. You know, she has these sort of prerequisites for surgery, one of which, the SIBO piece, but also, um, pelvic floor therapy. So I definitely needed this post babies, like the level of incontinence. Like I would sneeze and I was like, well, time to change, or I would try to work out.

    And it was really challenging for me, and that felt like it really came from childbirth and, and labor and just being pregnant. So, um, so I kind of went in, uh, a little skeptical. I was like, how's this really gonna help me? I mean, is this, you know, really worth it? And, you know, for her it was a requirement.

    You had to do eight of these, you know, pelvic floor therapy sessions. Um, In order to have the surgery. So I said, okay. She said, you know, this pelvic floor therapist in Encinitas is just the best in the world. She's incredible. She was actually her pelvic floor therapist. Um, because my, this particular doctor also has a history of endo and adenomyosis and also had a full hysterectomy.

    So she sent me to a woman, and I want everybody to write this name down, who's anywhere near the area. It's Jra Mueller. Um, she's a doctor of pelvic floor therapy or d p t. Uh, I'm sorry if I butchered that. She is just, I credit her with everything good that has sort of happened in my life since meeting her.

    And I'm really, even though I'm not working with that surgeon in LA anymore, which I'll get to that part of the story, um, I would never have found, I probably would not have found Jra because I live about 45 minutes away from there. So it's completely out of my way. But I went to her because it was so high.

    She came so highly recommended. And then after meeting her, I was like, I would never see anyone else. I mean, she's incredible. She's very smart. She also has endometriosis, um, which she's very public about and has had these surgeries, not the hysterectomy, but the excision surgery. So on top of helping me with all the pelvic floor stuff, which by the way, for anyone who has recently had a baby and is experiencing that, it does work.

    Um, pelvic floor therapy, the, just to kind of circle back, my ob, g y n, the one who did the laparoscopy and delivered my babies had also told me, um, postpartum that I would just need to have a surgery. She's like the incontinence. Yeah, you can't really do anything about it. Pelvic floor therapy doesn't work.

    You're probably just gonna need a surgery. That's not true.

    Stop. Yes, that I've heard people not recommending pelvic floor therapy therapy, but I've never heard of someone actively saying it doesn't work. And, oh, my pelvic floor therapy, if anyone needs recommendations in Atlanta, just send me an email.

    I've got a few that I recommend to. Um, and I was doing that before my baby was born and after, and I had one moment my entire pregnancy and postpartum where I beat a little. So yeah, other than that, like pelvic, it hurt people.

    Yeah, it

    completely reduced my pain with sex in a way that I had no idea was even related to.

    The pain I was having, we kept thinking it was like u t I, but then my test would show up negative. But it was, that's what it felt like. And I'd have micro tears and it was just brutal. Mm-hmm. Literally like three round, three sessions of pelvic floor therapy and it was like that and breath work and other stuff, but like pelvic floor therapy all the way

    it works and it's not invasive and it's, you know, um, and I just am learning so much about my body.

    Just things I didn't, you know, I just became so much more comfortable with my body, um, and understanding what was what in my body that I had never, yeah. I've just never experienced that before. So she has been life changing. I see her weekly, I. My husband knows, I mean, nothing is going to get in the way of me going to that appointment if we have a sick child.

    He stays home so that I can make it to that, um, because it's that important to me. And, um, it will continue to be a, a really important part for next steps in my care. So Jra Mueller, write it down. Um, she's incredible. And, um, essentially, uh, what happened as I was, you know, I was on track to have my surgery with this other doctor in, in the fall.

    And um, then because it's all out of pocket and she doesn't take insurance, insurance is really tricky. And my particular insurance has been sort of, Notoriously known to not cover this procedure. And so if they didn't cover it, which was pretty likely that that would be the case, because she's out of network, I was going to have to pay $33,000 minimum out of pocket two weeks prior to the surgery.

    So when I learned that, I remember being in my car and I just pulled over to the side of the road and I was just inconsolably crying. And I called my husband and I said, I don't think I can have the surgery. You know, we can't really afford this. And he said, well, we'll just sell our house. Which I thought, no, we're definitely not gonna sell our house.

    I mean, we're not gonna do that. That's, that's insane. Um, and I called my parents and then they offered to, you know, forego doing their remodel so that they could help me cover it, which also just didn't feel like an option for me. Um, my husband's parents also offered to help, um, but I don't really have a relationship with them.

    Um, so that didn't feel comfortable for me either. So I went back to Jra, um, for an appointment and essentially told her what was happening, and that was the point in time where she recommended to me. Somebody in San Diego who she had gotten excision surgery from, who she referred to as a unicorn doctor.

    And I am so grateful that I learned about this doctor. She is incredible. She's in San Diego, she takes insurance. Um, her name is Dr. Spring Robinson. She is my surgeon now, and she's not listed on Nancy's nook. Um, And I won't speak to that 'cause I don't understand that completely, but it sounds like there's possibly something political happening there.

    Um, I don't really know, but she absolutely should be, uh, a doctor that people should see. She's the only doctor I'll recommend to any of my patients or my friends, um, whenever they're having any sort of symptom related to this 'cause she is incredible. When I went to her recently, I think this was in early April 5th, I wanna say somewhere in that ballpark.

    So this is fairly recent. She saw my surgery pictures from 2016. And in other words, she basically said, holy shit. She said we need to do emergency surgery. She's, and essentially what she told me is that in those photos, which were, I had been explained that it was, you know, stage one, really mild, not a big deal, that it was stage four deep infiltrating endometriosis and that my organs were so obliterated that I'm at very high risk of actually needing rectal reconstruction surgery, which explained so many of my symptoms.

    Um, so many, so much of my pain and my fallopian tubes at that time were completely covered in endo. And as you recall, my doctor told me they were clear. So there was no chance I was gonna get pregnant. I spent two years of infertility every month hoping and, you know, doing anything I could to get pregnant for nothing.

    I mean, there was no chance it was gonna work that way. And my uterus was like, I think she said the words 10 times the size of what it should be. It was a completely different color. Um, Everything's moved to the left. My organs are like probably wrapped around each other from the, all the adhesions that I have.

    Um, and I just, so now I'm, I'm, my surgery got bumped at May 24th, so it's, you know, next we, or not this coming Wednesday, but the next Wednesday. And, um, and I'm gonna be, you know, um, bedridden for at least two weeks. Uh, I mean, I'll be able to walk and I'll, I'm being encouraged to walk, but, um, I mean, I'm gonna need to rest a lot.

    I won't be able to hold my babies for six to eight weeks, um, or lift anything over 10 pounds, which basically renders me useless as a mom because who do you think does all the grocery shopping and, you know, takes the kids to all their activities and if I can't lift them safely, in and out of car seats, Um, you know, then I, I can't be the one, you know, caring for them in those ways.

    So it's going to disrupt our lives pretty significantly, at least for the next few months. Um, and hopefully, you know, I, I won't know really until that day whether my ovaries are staying in, um, if they are, you know, obliterated, I lose my, my ovaries, which creates a lot of complications from a hormonal standpoint, which I'll have anyways.

    Um, I will be on hormone replacement therapy regardless of the ovaries, but it'll just be, you know, a much different picture without them. So I'm hoping, I mean, it also puts me at higher risk for like heart failure and things like that when you lose your ovaries. So the goal is to keep those in if we can.

    Um, but, but, you know, t b d on, um, what's going on with potential rectal reconstruction surgery, she won't really know until she, she goes in there. Um, but it, it completely explains all of my symptoms for years that I've been having. That I've been told, you know, you're just an anxious person. And it's actually in my file, if you read my notes, it just says, I mean, it denies all my pain.

    It basically said, patient denied pain with sex. Patient denied or pain with intercourse. Patient denied, you know, this, this, and that. I said, I absolutely didn't deny that you're, you're denying it, um, on my notes. And, um, and it just said, you know, all over my files, patient is presenting as very anxious, anxious, anxious, anxious.

    Which of course, I'm anxious. I'm in pain. I'm glad you're saying,

    because I have, I have clients with

    similar paperwork and

    to hear somebody else, uh ha and, and they, they, they don't have an ending yet

    that validates

    that pain and that the anxiety is caused by pain, not the pain is caused by anxiety.

    So, exactly free to say this, you know, for everyone to

    hear.

    I just really,

    really appreciate. Yeah, thank you. Yeah, it's, um, It makes me so angry. It makes me so angry. Um, because again, I think this is so important. Um, and I don't say this to sound, you know, like braggadocious or pompous in any way, but I, I'm very highly educated. I went to one of the top universities in the world.

    I have that one of the highest degrees you can have, you know, 1% of the population has a doctoral degree. It didn't matter. It didn't matter how smart I sounded. It didn't matter how much information or education I had or was able to, you know, provide myself in, in these areas. I was made to feel so stupid.

    Um, and so, you know, exaggerative. I honestly, I was thinking about this today, you know, doing this podcast is that I feel like I probably sound, and not just me, but just, just people that are navigating this system, we sound like conspiracy theorists. You know, I'm like, I need my foil hat. You know, we do, we sound ridiculous 'cause we're like, they're not listening to us.

    We can't get proper care and there's no research and there's only one sentence in medical. And it's like, it's true. But if you're not navigating this, these systems and you don't know that you have these diseases, then you just assume your doctor's really smart and they know what they're talking about.

    And I think actually the biggest fear I have for my friends and my patients is when they have a really nice doctor. And this is gonna sound crazy, but hear me out. I have some people in my life right now that I suspect are actually, have probably some, some something. I don't know what it is. I can't, I can't say that.

    I'm not here to diagnose that. That's, that's me not staying in my lane, right? But I, I have concerns based on symptoms that are not normal. So I wanna say this. If you have pain in anything that's not normal, if you have pelvic pain, if you cannot have sex without being in pain, if you cannot have a bowel movement without some really ridiculous symptoms, pain, um, you know, whatever things going on that shouldn't be happening, and they're, they're more often happening than not, that's not normal.

    Um, so if you have a really sweet, compassionate, kind doctor that, you know, maybe delivered your babies or listened to you with this one thing, or is really sweet and takes the time with you, I'm worried for you because I can almost guarantee you that that doctor is all those things, which is great because doctors should be that and they should have good bedside manner and they should make you feel heard and listened to and respected.

    But if they don't have expertise in this area, they are going to make you worse. They're gonna put you on medication that you shouldn't be on. You should not be on these medications. They're going to recommend that you get pregnant or that you drink alcohol to calm down, or that you take an anti-anxiety medication.

    And that's great, except that's not going to cure your endometriosis. So you need to fire that doctor, or at least for this particular thing, and find somebody that actually knows what they're doing and has good success rate, removing the endometriosis so that you can live a pain-free, happy normal life.

    And so that's what I'm contending with right now is as I'm talking to friends about this, like, oh, but I love my doctor. He or she, they're so sweet and I wouldn't wanna leave them. And it, it just, it makes me so, uh, I feel overwhelmed, you know? I, because I don't want them to go through this. Yeah. I,

    uh, so my take on that, my.

    From a therapy perspective is, and you did, you said this too, but keep your doctor, but find in addition to your yearly checkup with that doctor, find somebody who specializes in this. Because having a relationship with a doctor that you trust, that you like is important. But when you're struggling to find pieces to the puzzle, you, and you know, your doctor is like you're saying, they're just kind of kindly, compassionately saying like, oh, like, you know, they're not really giving you a whole lot or referring you to a specialist.

    Then you have to add to your care team. You don't have to get rid of that doctor, but they've just become your general practitioner and you've got to keep searching for

    answers. Exactly. And if they are such a kind, you know, thoughtful. Um, ethical doctor, then maybe you'll help educate them in this area, and then they will be, you know, another voice for you or another.

    They'll, they'll be intrigued enough to learn more or at least refer to the proper person. I mean, every doctor I've seen since then, just for other things I've said, if you have a woman that's having these things, please send them to Dr. Spring Robinson, because she's here and she's local and she takes insurance and she's incredible.

    And she, you know, that's who they should be seeing for this. And I just am throwing her name around because I want people to know about her and to be able to find her because she, she is accessible to lots of different kinds of people, not just, you know, wealthy, educated, you know, women. And, um, I, I just, it makes me so sad that, uh, that, that so many of these doctors are not accessible.

    You know, it's like you find these unicorn surgeons, but then they can only help you if you have money. And I just. I don't think that that's okay. Yeah. It's,

    it's a broken system, which I know we've talked about a lot, and I always wish that we could end that sentence with like, here's the solution to this fixing this system.

    And I've yet to, I've yet to find a way to end on, on that conversation in a way that feels good. Yeah,

    I can imagine. Well, I think just you doing podcasts like this does really help and hopefully it's reaching, you know, a large audience and, you know, people can share it with their friends or their family members and help them, you know, I'm sure you're helping a lot of people by, by putting this out there.

    Not, not my talks per se, but just all the, all the podcasts, all the episodes that you're doing. Um, it's really incredible. Yeah. I For you,

    I appreciate that. And, you know, I, this is my, I guess it is, it's my, my privilege, um, because I. Again, like I'm in a space where I can take the free time to interview people.

    You know, I don't get paid for this hour. You don't get paid for this hour. Um, and I'm, I'm able to, and so, because I've, I've used to, we know, I think it's an ongoing journey, but the conversation around privilege and access, and it's like, how do I, okay, I, I have a privilege. I ha there's no, I, I don't, can't deny that.

    And I can't pretend I don't. So how do I use it in the best way that I can? And so far, this is the way that I know how, um, with my own energy levels and what's important to me and, and what is meaningful to me. This seems to check all those boxes. Um, and so I'm always really grateful, again to people who come on like you and talk about it.

    Um, so we can just be collaborative in this. Mm-hmm.

    One thing I, I wanted to take a second just to say too, 'cause I think a lot of people in my life right now have been trying to figure out how to support me through this. And I think. Uh, there are so many sort of platitudes and silver linings that people wanna sort of force on me about this, that, um, I don't, I don't want, I mean, I never want toxic positivity.

    Um, I, I like to complain. I think complaining is like healthy and honest. It can be annoying, um, if you're, you know, if you're not doing anything about it. But I am, I'm a complainer who also does, I act on things and I take care of things, but just let me, let me be moan and begrudge a system that is, you know, misogynistic, racist, and like you said, broken.

    Um, Because, you know, I think the squeaky wheel gets the oil or as they say, right? And so I like to be squeaky. Um, I think that anger is such a healthy, valid emotion. Obviously it's a secondary emotion and what lies beneath it is right pain and sadness and grief. And I think, um, that is exactly how I should be feeling in this moment.

    I'm about to go through something really painful, um, scary, uh, risky. It's going to change my life significantly in some ways for the better, but possibly in other ways. Um, it will create new challenges, um, and possibly change my quality of life in, in a, in a sort of negative way. Uh, and, and that wasn't because I wasn't trying to take care of, I mean, I, I did all the right things and it didn't matter.

    And so let me be angry about that. I. And if my anger is not something that can be tolerated, then, um, I think then that those are sort of the people right now that I, Hmm. How do I wanna say this? I don't know. I think that it's, I've been met with a lot of the, well, but you're not gonna be in bed for more than two weeks, as if two weeks isn't a long time to be in bed anyways.

    Or, you know, not being able to hold my kids for nearly two months and pick them up like that is, especially for how young they are. That is not just really hard on them, but also on me to not be able to just like be, be a mom and care for them the way they need to be cared for. They're very young and they, they need to be picked up and held and they need to, you know, and I'm not going to be able to do that.

    Um, and I have anger about that. And, um, Sorry, I'm, I'm carefully, I, I'm sort of thinking as I'm speaking, so I wanna be mindful of that. Uh, I think that right now I'm very drawn to being with people that have compatible responses to the situation that I'm. I'm going through and I think other ways that people can be helpful when someone's navigating a big surgery or just these kinds of things, uh, you know, the meal train thing is, is, is extremely valuable.

    If you're not someone that can I. Is great at validating or empathy or not sort of jumping to like, let's look at the positive thing and sort of, you know, being Pollyanna. Um, that's okay. Um, meals are really comforting or, um, you know, helping with the kids or helping with grocery shopping or, um, little tasks like that that really, that, that really can go a long way.

    And that is, um, really meaningful as well and, and very valuable. So, um, cleaning,

    cleaning your bathroom. Yes. Please come over. Nobody will ever ask you to clean their bath. Like when, when we're postpartum, when we're sick after surgery, I'm never going to ask a family member to come clean my bathroom. So please just offer and just do it.

    You know, who does do that in my life? So I have to give her credit 'cause she'll probably listen to it. Excuse me. My mother, my mother does clean my bathroom in these moments. And yes, I, okay, good. Very appreciated. Because it's true. It's just, yeah, it's hard to do when you're not well. Um, and it's necessary, right?

    You need things to be sanitary and clean for, for you and for your family. So, um, I did, I did just wanna sort of say, say that because I think, um, I'm just kinda looking at my notes because I had written a few notes that I wanted to sort of say, um, I think, yeah, I just think that that toxic positivity, gut reaction that people have, 'cause I think they want you to feel better and they, and I think they also wanna feel better.

    I think it's uncomfortable to sit in that discomfort. And obviously as a psychologist, I have a much higher capacity and willingness to be able to do that. And I think that it's, it's challenging when a lot of people in your life don't sort of have that 'cause it can feel extremely lonely, um, and very dismissive of what you're going through.

    And it's not the intention ever, I know that. But the impact remains and the impact is what I'm always really honed in on more than your intent, because your intentions are probably always gonna be pretty good, but if your impact isn't, then it's worth maybe shifting or at least finding other ways to be supportive for people that you know, don't require you to dismiss their feelings that are super

    valid.

    It's true, it's true. There's such a, we're, um, where did I just hear this? We're just a grief phobic society, and I cannot remember exactly again, where I just heard that to credit them. But we're grief phobic and so, you know, people, especially if they're not the ones having to deal with it, um, I don't even, again, I don't think it's conscious and I know their intention is, is well-meaning, but as soon as they start to feel the grief pop up in their own body before they can even consciously be aware of it, they're like, Nope, nope.

    Everything's gonna be okay. And yeah, it's isolating. 'cause we don't have that privilege to be able to say, yeah, everything's gonna be fine. And I can, it's like, no, we have to sit our bo we have to sit in our body every single day and wonder about what's gonna happen. So it's just nice to have somebody else who can be in it with you.

    Mm-hmm.

    Yeah. And I wanted to just in sort of, um, to honor the work that you're doing, um, I, I heard this quote recently and it wasn't about this in particular, um, but it, it feels applicable, so I wanted to share it with you, if that's okay. Um, so it's, uh, it was stated by, uh, a person named Loc, VA Menin, I'm not sure if you know of loc.

    They are an internationally acclaimed author, poet, comedian, and just public speaker. Um, and they recently said, there is magic in being seen by people who understand. It gives you permission to keep going. And I feel like you do that, um, by having this podcast and sort of giving, uh, a voice to so many people and helping them sort of be understood and be seen.

    Um, so thank you. Thank you.

    Yeah. It's a, it's just been, I think, like I said earlier, a beautiful project, um, to connect. To connect with each other. Um, you know, obviously I have my own experiences too, and they're different and talking to all types of different people and every single story, whether it's exactly, whether it's the exact same diagnosis and similar undertones, like, there's just something different to be learned in everyone's story.

    So, and what I appreciate most too, 'cause as therapists we're really trained to be a blank slate and not share much with our clients. And so, um, just being, just having therapists come on and share their own story is just, it's just beautiful. Um, we can, I think it makes us better clinicians and you have more of a, an ability to connect with your clients.

    And of course you still have to, you know, be careful of transference, countertransference and all that stuff, but you have to do that anyway, right? So, um, yeah.

    Thank you. No, thank you.

    Is there anything else that you wrote down or that you've been thinking about that feels important to expand on? Um,

    yeah.

    Uh, I'm looking, well, I was, I don't know if this is, you might cut this out 'cause it might be ridiculous, but I was sort of revisiting, I don't know if you've ever read, I'm sure when you were in, you know, junior high or high school or something like Plato's allegory of the cave. It's like a philosophy.

    I didn't read that one.

    No. Okay. I'm not gonna, I will not, I am not a philosopher so I will not explain it, but for people that wanna read it. But essentially there's like prisoners that are in a cave and then, you know, they spend their whole lives and there's, that's sort of all they know and I think they're like looking at their own shadows on the wall of the cave.

    And that's significant for some reason. But there's a few that manage to, I think, escape. And, um, the whole notion is that, The, the people that come back to be like, Hey, there's like this whole other world out here did, you know, come out here and look, they, um, the, the idea is that sort of like the other prisoners that stayed in the cave would either like try to kill those people who are trying to kind of free them because they wouldn't wanna leave kind of the safety and comfort of their known world.

    And that made me think of people that are navigating medical conditions and navigating the health system is like, they have information and experiences now that have shown them a different world than what so many people know and understand. And when they try to explain that to people, people don't, they're not ready to hear it.

    'cause it's just feels scary to think about, oh my doctors that I'm trusting maybe don't know as much as they think that they do. Or maybe they don't care as much as they should. Or, you know, a variety of, of things that people might feel when you're sort of. Planting doubt, seeds of doubt in, in this world that feels safe to some people.

    Uh, so I, I don't know why, but I felt inclined to kind of share that 'cause it stayed with me. And I thought, yeah, that's kind of how I feel right now. Like, I'm like, I wanna free everyone. I want everybody to know and to, to get the proper care for endometriosis. And I'm, I'm worried that they're not. And I, I, I'm, I like want them to change who they're going to see and all these things.

    And I realize in doing that, that I'm sort of, that, that is a little bit, um, uh, what's the word I wanna use? Um, uh, words are not coming to me by the way. Fogginess is a symptom of endometriosis, brain fog, which I've also since learned, which makes a lot of sense. But, um, it, I think it's, uh, it just shakes the, their, their foundation.

    Um, and that is scary. People don't wanna think about the world that way. They want to feel safe and trustworthy. And so when someone comes in and says it's not, ah, listen to me. That's where that, you know, conspiracy theorist thing kind of comes up as like this, you know, the crazy lady on the street again yelling about endometriosis, I feel like that's who I'm becoming.

    I'm gonna have like signs on my garage, you know you need surgery.

    Ah, so, um, isn't it it when you are one of few that. Have experienced something. Again, it's isolating and it makes you question your own experience to, to a certain extent. Um, and again, that's another reason why I do this podcast because the whole goal is to demystify the therapy process for people with chronic illness, like our goals, a therapist, especially because people have been, oh, this is all in your head.

    Go see a therapist. And it's like, uh, actually this is actually very much in your body. And now as a therapist who has lived experience and a lot of additional training around chronic illness and the mind body connection, I can help you navigate this system in a much different way and create safety pillars along the way.

    I mean, that's a big, that's a big piece of somatic experiencing and, and just trauma therapy in general, is that we're always creating safety before we say, Hey, go out of the cave. It's like, you know, it's interesting, as you were saying, like the Plato's and the cave and the shadows, I was like, hmm. The shadows are a resource.

    You probably would take your shadow along with you in order to do a journey like that so that you can feel the familiarity and the safety of the cave, which is all you've known. You need your shadow, so take it with you, um, as you kind of go out into the world and try to expand your

    worldview. Well, and as you were saying this, it's a really important point came up because I also want.

    I wanna hold my field accountable as well. 'cause I've really been coming at, you know, um, medical doctors today. Um, and thanks for still listening guys. Um, but I also wanna come for, uh, the field of psychology because, I mean, holy cow, where did most of these problematic ideas about women in hysteria come from?

    They came from Freud and others and his, you know, colleagues and they have, I'm, I, it's insane how long that they, they have managed to, you know, um, hang around in this really dangerous, um, Misogynistic, disgusting way. Um, but psychologists, I mean, when, when I was navigating this pain, I mean I did go to couples therapy, um, to, to work through some of the, you know, sexual dysfunction that was happening.

    And not once did anyone think to say, Hey, have you had your hormones tested? Like, let's start there before we dive into whatever might be going on from a emotional standpoint or psychological standpoint. 'cause it turns out I have no testosterone. Zero. And a lot of that's because of the endo, because it's so high in estrogen.

    Um, and it's also normal for women with endo to not wanna have sex and to have low libido. One because of the estrogen, but also obviously because of the pain. Um, but I mean, the hormone thing. It's, it is such an easy, it was like a, a blood, a prick of, you know, blood and, and then you sort of find that out and nobody thought to do that all these years that I was like, Hey, I think something's wrong.

    It's like, just drink some wine. I'm like, great, thanks for trying to make me an alcoholic. I don't think that's going to help my situation. Um, also alcohol is a depressant. It also creates a lot of other problems, I'm sure I would imagine. Uh, dehydration, which probably doesn't help with lubrication, which is an important part of like healthy sexual functioning.

    Um, but I digress. I just felt like I wanted to say I was also failed by my own field and I imagine I have or will also fail people in these areas. Um, as a doctor of psychology, I know that, um, I have probably created harm unknowingly. Um, and so. I, I just wanna say that this is, it doesn't end, it doesn't start and sort of end with the medical field, like the, the field of psychology and we as therapists and all these different disciplines, whether it's acupuncturists, et cetera.

    'cause a lot of them that I went to also didn't know anything about Endo. And of course not, they can't know about everything. But I think if you don't know about something, it's just important to say that, I don't know about this. Let me get you to someone who knows a lot about it, you know? Well, you know,

    as a society, we do believe like, Physical stuff is a manifestation of your mental, emotional state.

    And in other cultures, it's the exact opposite. If you have depression or anxiety, it's like, oh, what's wrong with your body? And they, they target it from that way. And I think that that could also miss the mark on a lot of ways too. So it's just, I just love that we are kind of going into this kind of like, functional medicine is a lot more kind of east and west combined, and that's where I have, there's a lot of pitfalls in that field as well at every field.

    Right. Um, but I, I do definitely just being able to, and this is where your education becomes, you know, it is a privilege in a sense too, to be able to take all this information and then differentiate for yourself, figure out what's right and what's wrong. Like that takes time, that takes energy, it takes education.

    So again, this podcast, your story like. It's just you have to constantly be picking up pieces. And, you know, the alcohol thing, I, I really wanted to say this earlier too, when you were mentioning it, and it's like, women are so taught to not feel pleasure from religious standpoints, from patriarchal standpoints, from every system.

    It, it is terrified of female pleasure. So it finds ways to reduce that and, you know, have a lot of women that I work with and this was my own experience too, um, trying to kind of figure out how to have sex without alcohol. Like, and we could do a whole other podcast on that. But you know, in your younger twenties if you drank, um, not, I do know some people that didn't, but a lot of us do.

    And it was like, oh yeah, well, you know, how did, how did you, how do you feel? Pleasure. How do you get turned on? Well, I don't, I don't know. 'cause like I would have four drinks before I'd have sex.

    Right, right. Well, and see it's funny you're saying that 'cause I actually didn't drink in my 20, I didn't drink ever until I was 25.

    So that was the other piece of things is that I was being recommended alcohol. And I was like, but I don't drink. I mean, I hadn't had like a sip of alcohol until I turned 25. And so there was that too. I'm like, can I get maybe a recommendation that feels a little more appropriate for what I'm able to take on here?

    Um, but yes, but to your point, I mean that was just, sorry a digression there, but Yes. No, it's important. Yeah.

    Either, either. What that tells me is either way, it was bad advice because if I'm a drinker, don't tell me to continue drinking, to get rid of my pain like that. I'm already at a risk for alcoholism, and if I'm not a drinker, then it's just totally out of alignment with me and my

    lifestyle.

    Exactly, yes. Yeah. It's just, but to your point, yes, women's pleasure, p I, there's a, actually, there was a, an interview that Madonna did about this I, a long time ago, probably in the nineties, and I don't remember who the guy was that interviewed her, but I mean classic, right? Just male. That was sort of talking about how disgusting her videos were.

    I think she did a music video where she's, you know, masturbating or it sounds, she's insinuating that she's going to, or that she is, I don't remember exactly even what video it is. I mean, it's Madonna, so it's probably every video, but she said something, she just responded in this way. She was almost smiling, which.

    Kudos to her. 'cause I cannot, but she just said, uh, why are you so afraid of my pleasure? Something, something. I don't wanna butcher her words. Uh, it's worth sort of googling that interview. But it was, it just really stayed with me. And to your point, I mean, you know, a 90 plus year old man, um, could go in and say, Hey, I'm having trouble having sex.

    And listen, I'm not here to say a 90 plus year old man shouldn't enjoy sex. Like you enjoy it all the way you deserve that. But I was, you know, in my early twenties and I was being told like, eh, you'll be fine. You know, you're just nervous. Uh, and there's not, you know, a Viagra for women. Um, it's testosterone, which by the way isn't f d a approved for women.

    So it's not covered by insurance. And it's the only thing I can take right now to supplement, to have actual testosterone in my system, which is a necessary hormone to have, um, to experience, pleasure, and to, um, I'm sure a number of other things. And, uh, so I have to pay out of pocket. So again, this is only accessible to certain people, certain populations of people.

    And, um, as

    if testosterone is something that only male males have,

    precisely like women, just like men have estrogen, women have testosterone. And also let's just talk about the fact that we're speaking about things on like a very binary, you know, male binary women. There's all kinds of things in between, right?

    Like intersex people and non-binary. And, you know, so everything I'm saying today, I, I think I use the word women a lot and I hope that, that it's just known that I'm, when I'm saying that word, I'm including, you know, um, everybody's sort of under that umbrella. 'cause I just, I, I wanna make sure I'm being inclusive too. Um. And when I say I work with, you know, women with chronic medical conditions, um, that includes everyone.

     

    So that interview you just heard was from a few months ago and the follow-up to Dr. Anna story is coming right now. It's, uh, another 10, another 15 minutes or so. Uh and it was recorded just this week so i hope you enjoy

     

    yeah, so, um, I talk about this at length, you know, over two hours probably on, uh, another podcast, um, called Eyecare Better, which is a really good resource for anyone that listens to your podcast, who wants to know more about endometriosis and, you know, related illnesses that often accompany endometriosis.

    So I recommend that to all the listeners, and I hadn't mentioned that. In our last, uh, in, you know, the beginning part of this episode. So that's a great, uh, resource to know. And yes, I, um, I was. Really surprised by how well I felt immediately after surgery. Areas of my body that have been in pain. Probably for the ma, you know, the, the majority of the last, I don't know, 20 or so years, um, they were immediately gone, which is pretty incredible when you think about the fact that I had, you know, ex excision surgery, a pretty, uh, for, you know, Deep infiltrating endo and a stage four endo and uh, a hysterectomy.

    You know, you'd sort of imagine that you'd be bedridden or in quite a bit of pain, and I certainly was the minute I woke up from surgery. Um, and they gave me Dilaudid. And then after that I never felt that pain again. Uh, I definitely stayed on top of my Tylenol and Advil, which is all I ended up needing to take, which was also surprising to me.

    Um, and after two days, I was off of everything. Which I was not expecting. Um, yeah, I was walking and, you know, I've actually felt so well that it was a little bit dangerous 'cause it made, it sort of gave me this impression that I could do more than what I should was allowed to actually do. Right?

    Post-surgery, you can't lift anything more than 10 pounds. Um, so my children groceries, you know, lots of things and, um, you know, you need to take it easy. You obviously can't have sex. You can't go in any body of water other than a shower. Um, You know, for risk of infection and things like that. So, other than those things which were, you know, minor inconveniences, I, um, I, I did so well.

    Um, I think the, the, since then, um, it's been, what, what I'm sort of realizing is that, that this is going to be a process. I think it felt so amazing to feel so good right away. And pain-free. Um, but it, it's not just pain, right? Like there's so many things that accompany, you know, these diseases. And in, in my particular case, um, you know, the lack of testosterone and I was able to keep my ovaries 'cause I think I keep forgetting, we recorded this right before my surgery.

    So I know there was the fear of, you know, am I losing organs? What's gonna happen? So I had a partial hysterectomy, was able to keep. Um, my ovaries. That's the only thing I, you know, I kept, um, the cervix, the fallopian tubes, and obviously the uterus. All of that was removed. Um, my uterus was so enormous that she had to cut it in half to actually get it out of my body.

    Um, yeah, I. And then, um, as far as the other concerns we had, I got very lucky that nothing else needed to be sort of removed. She was able to remove all of the disease. Um, I really trust her. She's an incredible surgeon. Again, that's Dr. Spring Robinson. She's in San Diego. For anyone who's close to Southern California or can afford to travel, uh, she, I couldn't recommend her more.

    Um, in terms of like the process that I was sort of telling you about, a lot of that is the hormonal piece. And I was put on systemic testosterone following the surgery by a different doctor who handles all of my te my hormone related things. And like, she's also a sex medicine doctor, so she's the one that's really helping me through that piece of the puzzle.

    Um, her name is Dr. Alyssa Yee, also really highly recommend, um, and. We, we were on systemic testosterone and my body, the way it metabolizes things, it's just, you know, every body is so different. And I think this was a really helpful reminder to me about that. Right. That particularly things that are not f d A approved for women, which is systemic testosterone.

    They don't have like any studies on the amount and things like that. So What ended up happening is that I, I used the recommended amount, but it ended up, uh, increasing my levels 10 times over the, over what they had been initially and then three times over the limit of what they should be, which meant, which, which equals that I was, I felt, Completely out of control, rage, and um, depression and anxiety.

    And I was really impossible to be around. I didn't even wanna be around myself. You know, it's like that horrible feeling of I wanna get out of my body and take a vacation and like leave that. Satanic woman, you know, in there by herself. It was really awful. And then once I figured out that that's what it was, I was taken off of that.

    We are, we took about a three week, four week break retesting, and then we'll kind of start again with much smaller doses. Um, the other thing she put me on, and I definitely wanted to alert people to this 'cause it's very cool. I hadn't known about it. There is a drug for women, um, who have, you know, no, or very low libido and are wanting right to increase that.

    Um, and it's called Addie. It's spelled a d d y I. Um, that is, I. I just started it about two weeks ago, so it's too early to tell. I can't really give you an update in terms of how it's making me feel, but I will tell you that the testosterone really helped while I was on those insane levels. I definitely felt, you know, like feelings and desires that I hadn't felt in so, so, so long.

    So that gave me a lot of hope Between those two things, I think that I'm headed in the right direction. Um, I think one thing for people that are going through a hysterectomy, um, and, and someone who's possibly had, you know, sex related issues, um, as well, it's can feel I think very scary to dive back into that and try that after you've, you know, had all this done to your body.

    And you know, you don't have a cervix anymore. It's replaced by what's called a vaginal cuff. And I think for me, there's still a bit of like a fear there of what's this gonna feel like and am I gonna feel pain? And so there's a bit of avoidance still that's happening and I wanted to really give my body more time just to heal and not rush into that.

    So again, I don't have updates in that department of my life, but, um, I feel hopeful and I hadn't felt hopeful. In the longest time. So I think that's pretty exciting. Yeah, that's really exciting. And I think hopefulness is often to just assign that, you know, things are, things are going right, like we can be, um, that hopefulness helps us get there too, right?

    So it's like it's bi-directional. We need some positive things to happen to bring hope, and then hope kind of makes the good things happen more. And it can be, what's the word I'm looking for? Kind of like. Just work off of each other. Mm-hmm. Yes. Yeah. And I think, you know, the other piece is just that this is really a lifelong, this isn't a cure.

    I mean, in, in the majority of cases, most women do not need another surgery, but a lot of that is also up to them, right. And how they manage their, you know, life afterwards. And it's really a lifestyle change. And that part has been a challenge for me as far as. Avoiding anti-inflammatory, you know, uh, inflammatory foods, um, or foods that cause inflammation and, um, living sort of an anti-inflammatory lifestyle.

    'cause that's so many of the things that I love, right? Sugar, coffee, you know, a glass of wine, um, you know, just carbs, pasta, I don't know all the things that not, you know, that probably impact my body and can create endo to begin with. So, I'm just sort of recognizing, I think, I think I knew this cognitively, but now I'm really living it and I'm recognizing that this is going to be a process with probably some highs and lows and moments that, um, I get frustrated with myself.

    Um, and then moments where, you know, I'm really sticking to my goals. Um, and I think I'm just trying to accept that and not be perfect and just allow myself to kind of navigate. You know, this life right post-surgery. Um, I, pelvic floor therapy is an ongoing thing. It will probably be a big part of my life for the majority of my life, which I'm happy about 'cause I absolutely love my pelvic floor therapist.

    Um, she is fantastic and I had mentioned her as well. She's Jra Mueller. Um, and she's actually the host of this podcast that I mentioned, um, for, again, anybody local, um, she's. She's wonderful. So those are kind of the things that I'm wrestling with figuring out still. Um, but as far as pain, um, you know, that feels, um, it's just, it's an, it's an incredible feeling to, to live a, a fairly pain-free life.

    Um, At least for now. And again, that can shift, I imagine, um, as you know, depending on my habits. Um, and yeah, I think that's also really helped, you know, depression and anxiety. I just feel so much better and I, I. I can't recommend, you know, going to a a, a good excision surgeon. Um, I think that's so important.

    It's very hard to find one, uh, a resource for that. Is the Eyecare Better website? Nancy's Nook as well is, is, is helpful, but I think as far as the video vetting that Eyecare better performs, I have, I feel more secure utilizing that, um, particular organization. Um, So, yeah, those are kind of my, I don't know, I, I wonder if you have other questions for me.

    I'm just sort of Yeah. Going on. So, yeah. The only other question I, no, no, that was great. I think it's, it's just good to hear even, you know, things that people don't think about, um, the hormones you have to go on after. And like the fact that women are not tested or, or it's not f d a approved and so we don't quite know exactly what the right dose is, and that there is still a bit of a trial and error in a lot of these processes.

    I think that's a big part. Big theme of this podcast is that just about everything, honestly, in life and in chronic illness is a lot of trial and error. Mm-hmm. And in that process, there's a lot of injustice. And then there's also just a lot of like, there wasn't an injustice done, but. This still just didn't work out well, and we have to figure out how to navigate that.

    And so that's kind of what I'm always gathering from these, from these experiences that people share with me. And, um, I think, yeah, just I'm curious if there are any other lifestyle things. So eating kind of anti-inflammatory. Mm-hmm. Um, pelvic floor therapy. Yes. What are some of the other things for you anyway that were recommended lifestyle wise?

    Great question. So exercise, um, and, you know, some sort of like mindfulness or meditation or yoga or things that, whatever your way of relaxing and feeling somewhat grounded. And that looks different for so many people and some people really don't like meditation. I'm one of those people, I'm just really bad at it.

    Um, but I, you know, just anything that you can do to really sort of, Find some peace, calm yourself. I think massages, you know, regular massages will be important. Things like acupuncture can really help. It's so case by case because you know, the way Endo presents and you know, in each body is so different and there are so many people with Endo that have the amount of comorbidities that some of these women navigate.

    I just, it, it amazes me and I see that a lot in my work, um, in particular, but it's. It's pretty incredible to me. So in those cases, they prob those, those types of patients have a lot more on their plate, I think, than I do at this point. But, um, but those are some of the, the most kind of recommended things and just really good, you know, multidisciplinary care, right?

    If you have a surgeon that you love, or a doctor that's working with you on one thing, you know, you need to, um, Make sure that they can communicate and you know that no one's stepping on the other's toes. Um, I think gastro a gastroenterologist will be important. That's. Something that I've had to add to my life.

    And that's mainly 'cause of the SIBO that I was diagnosed with, which I'm still figuring out. Um, and I, it's not a high priority for me at the moment, I think 'cause I just have so much to take care of that I'm kind of like, okay, I know I have SIBO and I have to deal with that. That has some, a lot of inconsistencies in the, you know, in, in the medical community.

    So it's, it's a little difficult to navigate, I think, because I, you, you read one thing and then you read something that completely contradicts that from two seemingly reputable sources, which is probably so common for your listeners, right? That, that that is what is so, Frustrating and, you know, rage inducing because how, how do you know which direction to take and if you're making the right choice?

    And so those are kind of the ongoing struggles and I, I anticipate those to be ongoing for, for a long time. So I, I'm just kind of in a place of trying to accept that and figure out how to, you know, live a fairly balanced, well-rounded life and, I don't have the answers yet, but I'm taking it one day at a time and I think that has felt more manageable for me.

    Yeah. No, that all of that is, yeah, right up the alley of this podcast. We do talk a lot about all of that, so I just really appreciate you sharing your story. It just goes like completely aligned with, with everything we talk about. Um, Yeah, it's hard making these decisions, these lifestyle decisions, especially when there's like differing opinions on what you should and shouldn't do.

    And it's, it's complicated, but it's, you know, we did talk a lot in our last episode too, just about support and that's again, what we talk about on this podcast. Like, how do we find the support that's right for us? 'cause that is such an individualized process. Um, so. Anyway, thank you so much for sharing an update.

    I'm excited to air this episode. Um, anything else come to mind for you? Just as, just oddly enough, I forgot to mention therapy and I'm a psychologist, so I should probably say that therapy also can be very helpful and important piece of the puzzle, right. Just to, to, to work with somebody who has an area of expertise in chronic medical conditions or health psychology so that you can.

    Also get support from them as you're navigating difficult doctors or difficult decisions. Um, so yeah, sorry, that was. Yeah, no, absolutely. That's, I've made it. Forget that one. Yeah. And just, you know, for um, listeners, like you can always email me and ask, uh, if I know anyone in your state, I've had people email me and mm-hmm.

    I'll one day get a directory together, but that's on the back burner for now. Yeah, no, I know it's a lot. You have a lot on your plate. But for endo related patients listening, um, The, the, the best directory at the, at the moment, I'd say, is eye care better. So that is a great resource for them and they can look for people in their state, and there's a lot of work that's expanding in that particular area.

    So I think, I hope Endo patients feel a little more hopeful, um, that they'll, you know, they'll have better access to care soon. Um, If they have a therapist direct yet directory, is that, is that what you're saying? Like, for talk therapy? So I'm actually the person working on that at the moment. Okay. Okay.

    Yeah, I was the, the director of, of, of this organization, or the, the founder I should say. Um, heard, heard me on the podcast and, and reached out to me. So I'm currently working to find, we're starting with California. Just because that's where I am and I know all the laws there. And then we will, the, the goal is to expand that, you know, throughout the country and be able to help people find access to therapists spec specifically.

    But the surgeons are on there and pelvic floor therapists and Perfect. It's an ongoing effort to keep recruiting more people. So if anyone listening, um, is a provider that specializes in this. Um, whether they specialize in endo, um, you can fill out an application, you can, you know, reach out and, and, um, and I encourage anyone to do that.

    Absolutely. That's great. Amazing. Well definitely let me know when that directory keep me updated and, and I'll share that email list as well. I definitely will. Absolutely. Alright, well thank you. I'm, I'm looking forward to putting this out and yeah, we'll keep in touch. Thank you, destiny. Thanks for taking the time to interview me again.

    I appreciate you. Absolutely.

Episode Summary and Notes

Find trusted and vetted endometriosis specialists: https://icarebetter.com/ Dr. Ana is eventually going to add therapists to this directory, but for now, you can find other medical specialists for excision surgery, physical therapists, urology, pain management, and dietitians.

In this episode, Dr. Ana Laura Arteaga-Biggs opens up about their experience with endometriosis and adenomyosis, two conditions that significantly impact the lives of countless women. Her story unfolds against a backdrop of adversity and personal growth, highlighting the importance of advocating for women's health.

Discovering the Power of Advocacy: In the face of adversity and medical gaslighting, Dr. Ana Laura discovered her passion for advocating for women's health. Her determination to provide accurate and evidence-based information to empower others facing similar challenges is truly inspiring.

The Power of Sharing and Healing:  Dr. Ana emphasizes the importance of sharing experiences and challenges within the community of women dealing with chronic illnesses. This openness and willingness to discuss topics like endometriosis and adenomyosis can help others find answers and process their own emotions. Her journey is a testament to the strength and resilience of women navigating complex health issues. 

A Painful Reality Unfolds: Dr. Ana shared that her signs and symptoms were present, but she didn't have the knowledge to connect the dots. Her periods were far from ordinary. Lasting for about two weeks and accompanied by excessive bleeding and excruciating cramps, she simply accepted this as the norm. At age 14, she began experiencing sharp pains in her left side, which, unbeknownst to her at the time, were related to her ovary. Feeling her ovulation was an abnormality she later discovered. Her first visit to a gynecologist was an anxiety-ridden experience due to her discomfort with nudity. This fear of doctors and procedures led to a pattern of avoidance, which further complicated her health issues. Doctors often attributed her symptoms to anxiety, a common dismissal that has historical roots in the mistreatment of women's health concerns. Dr. Ana calls for a shift in how we approach healthcare, advocating for better education, open communication, and questioning authority when necessary.

Recognizing Limits and Ethical Responsibility: Drawing a parallel to her profession as a psychologist, Dr. Ana emphasizes the importance of recognizing one's limits and ethical responsibility. Just as she would refer a client to a more qualified colleague when necessary, the medical community should consider referrals and collaborative approaches for complex cases.

Understanding Pain and Its Effects: Growing up, Dr. Ana learned to deny her pain, attributing it to fear and anxiety. She describes herself as an empathetic person who feels others' pain intensely. This sensitivity sometimes led her to overlook her pain or view it as exaggerated. 

Painful Intimacy and Misguided Advice: Dr. Ana reveals that sex was excruciatingly painful for her, leading to avoidance. Medical professionals often advised her to relax or have a glass of wine to alleviate the pain. These suggestions did not address the underlying issue, and she began to feel that something was psychologically wrong with her.  Dr. Ana encourages us to break the silence surrounding women's health issues, challenge societal preconceptions, and advocate for better healthcare for all. 

Advocating for Informed Medical Care: This podcast episode illuminates the complex, often frustrating, and sometimes disheartening journey many individuals face when navigating the healthcare system, especially regarding conditions that predominantly affect women. It serves as a reminder of the importance of informed self-advocacy, the need for specialized medical care, and the role of mental health in managing chronic conditions. 

Conclusion: Dr. Ana's determination to seek answers, educate themselves, and connect with advocacy groups demonstrates the power of self-advocacy and the importance of sharing experiences to raise awareness and support others facing similar challenges.

This podcast serves as a reminder that conversations about women's health, pleasure, and well-being must be inclusive and considerate of all gender identities. It encourages us all to challenge the existing norms and biases that often hinder proper medical care and understanding.

Listen to the full conversation below!

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