How Self Diagnosing Saved Me · Endometriosis Surgery & Neurodivergency, ADHD, Autism

Hey guys welcome back to my channel. So how was everyone's mercury retrograde? I think it ends today. If I'm not mistaken, it's Monday, October 18th. But my mercury retrograde was it started off okay and I was actually talking to one of my friends about that. I was like I'm not really feeling the mercury retrograde this time around and I think I kind of stuck my own foot in my mouth because it seemed like the following day everything just started to kind of unravel a lot and really fast. And so you know I guess that's what happens when you get to I don't know ahead of yourself I guess. And so there was a lot that came up for me in my personal life for me to unpack and download and process and so I'm going to kind of get into it a little bit in today's episode. And so I was thinking about how I can kind of put everything under one title or topic and so I think I'm gonna speak on this whole subject of self-diagnosing. I don't like that term. I think there's a lot of stigma attached to it. I the way I like to think about it is self-identifying and I'm going to be talking about this in regards to your health whether that is your physical health with your body or that is with your mental health. And so I'm going to speak on my experiences with self-identifying with certain illnesses or disorders and the whole process of being diagnosed and how that is for a lot of women and for me personally as well a really hard road to travel. And I don't think it's talked about enough because when I was going through the process of getting and seeking diagnosis in order to seek treatment it was very hard it was very disappointing and very discouraging and I tried to look for other women out there speaking on their experiences in order to find some comfort or guidance even and there wasn't a lot out there. I mean thank God there is a few brave women out there talking about their experiences and have similar struggles but granted not a lot especially women who look like me you know it just helps a lot more when you have people on the internet that looks like you shares similar experiences speaking on their experiences in order for you to feel in order to feel less alone and to have a little bit more guidance and information on what you could do and what you should do. And so yes that is what I'm going to be speaking about today let's talk about self-diagnosis or as I like to call it self-identifying. Let's get into it. Okay so first on the list of this topic is my endometriosis journey. If you go on my YouTube channel and you look at the videos the few videos I have on there right now you will see that endometriosis recipes is the first video I have on there and when I made that video which was let me check so I have my facts straight. So when I made that video it was nine months ago so almost a year ago around that time was the first time I was researching endometriosis because I had been struggling with endometriosis my whole life. But my symptoms started to get really really unbearably bad to the point where the chronic pain I was dealing with on a day to day basis would debilitate me to the point of just being bed ridden every single day in so much pain. I get into a little bit on those symptoms and how much pain I was in in that video so if you're interested in that please go give that video a watch. But eventually I had found myself in the emergency room because I was in that much pain and I had a friend reach out to me and she mentioned endometriosis and so that was the first time I had ever heard of this word. At the time I didn't know what it was I didn't even know what I was struggling with I just knew that I was struggling with so much chronic pain that just never alleviated it was either excruciating or terrible it was to that extent. And so my emergency room experience was literally so traumatic it was so terrible I was in there for 12 hours by myself with no food or water barely anyone you know took care of me or even checked up on me while I was in extremely bad pain and I eventually was left in a room for so many hours that I decided to just go home because there was nothing being done I couldn't even get a cup of water. This doctor that would come into the room every few hours or so would tell me you know just wait in here and we'll get imaging done and find out what's wrong and that never happened and so I remember I was just you know sobbing with so much I was in so such a terrible place mentally and emotionally and physically and I remember this nurse walked by it was a guy and he saw me sobbing and he felt really bad and he was like what can I do to help you and I was just like I want to go home can you let me out and I left and kind of I was in such a desperate place that when my friend mentioned a no me droosis I was I was at a point where I knew that I couldn't find help in doctors because of that experience and so I deep dove into researching what endometriosis was the symptoms and right away as I dove into that research I knew that is what I had everything made sense I started tracking all my symptoms back to the very beginning of me getting my period and how those symptoms transformed and worsened throughout the years how I was able to manage it with birth control for so long and how the symptoms began to worsen at a faster pace when I stopped taking birth control and it just made sense and I knew I had a no me droosis I listened to countless of hours of videos and podcasts of women who've had a no me droosis TED Talks you know just giving myself all the information I wrote pages on pages in my notebook on what my symptoms looked like how they transformed throughout the years I I kept a pain journal I kept a journal keeping track of my symptoms depending on what food I ate and I was I was in it and so when I had self identified with endometriosis as people would say self diagnosed myself with endometriosis I made it a mission of mine to get that diagnosis get treatment for my diet so that I don't have to suffer as much and so I started scheduling a bunch of doctors appointments a bunch of OB-GYN appointments and disappointingly enough every single doctor I saw or nurse practitioner basically told me it was all in my head it was normal to have the symptoms I was having with my period to just take motrin when I have my period and just take birth control and I even had a nurse practitioner laugh when I brought up endometriosis I brought my journal in every single appointment I had with different doctors I brought my journal I was ready to talk about my symptoms why I had endo ready to get that treatment plan done and in place right and one of the nurse practitioners I saw when I brought up endometriosis she just kind of laughed at me she was extremely demeaning and she was like why do you think you have endometriosis and I kind of was in a lot of shock because it took so long to get that appointment with her this was kind of like when COVID was still really bad and it took like months for you to see any sort of doctor or nurse and so when I went in there I was already struggling every day for months and so when I went in there and I brought up endometriosis it's very important for women like me to feel heard and to feel validated and to feel like we're taken care of and so when I finally got that chance to bring it up and brought my journal with me ready to talk about my symptoms that I spent so many hours researching and writing down and tracking to have that nurse laugh in my face and kind of tell me There's no way you have this and it's funny you think you have this was extremely Traumatic like I'm not gonna lie. It was extremely traumatic. It was extremely demeaning. It was extremely discouraging and That was one of the many experiences I had with trying to seek out that endometriosis Surgery and treatment plan and so I saw Two more nurse practitioners after that. I didn't know I was being Assigned to nurse practitioners because I kept telling them I need to see an OB-GYN But the clinic kept assigning me to see these nurse practitioners and all of them kept laughing in my face or telling me everything was normal and Saying there's nothing we can do some of them even brought up the word cancer and I feel like that's just so That's so irresponsible to casually bring up cancer and say hey if you have cancer we can't do anything now We just have to wait till it worsens and then we can treat it One of them brought that up and if you can imagine me going through chronic pain for Almost like two years now that's worsening and someone's just casually bringing up cancer and the fact that they can't treat it until it gets worse And how they don't think you have endometriosis. It's very traumatic and It it made me feel very distraught and So eventually I had made an appointment with my primary care doctor because I just didn't know what to do and I Remember when I went in for the appointment it was like months later after Taking months trying to see these nurse practitioners this whole process took almost a year and when I went to see my primary care doctor I Just remember telling her my experiences with these nurse practitioners telling her about my pain and I just started crying and I don't cry in front of people often I don't cry in front of people ever but I just cried in front of my doctor because I felt hopeless and trigger warning here, but a lot of women who struggle with endo struggle with thoughts of unaliving themselves because The medical system really fails us in so many ways so many women go undiagnosed untreated for their whole lives and They're just suffering with chronic pain and I At that time felt absolutely hopeless and I felt like my body was betraying me I felt like I couldn't just wake up and live anymore. I was just in so much pain every day and I felt like I It was a painful experience to be alive If you can imagine your state of mind when you're experiencing that it's it's not good and my doctor Thank God Bethysed with me and she was like we will get you the help you need There's this great physician that comes to our clinic once a week I will schedule you with her. She is amazing out what she does she scheduled me with that physician and I had a glimmer of hope so When that physicians appointment was getting closer and closer Me and my trauma with the past nurse practitioners I thought to call my clinic and make sure my appointment was with the physician and not a nurse practitioner I called in and I was like hey you guys I have an appointment with the physician on this day Can you make sure it's with that physician and when they checked they saw that it was made with a wet nurse and I was like no no no no. I am not seeing a wet nurse. I am not seeing a nurse practitioner. I am seeing this physician Give them the name and they're like okay. We made sure you are seeing the physician and so Another example of if I wasn't careful and called in and made sure I would have been failed yet again And I would have waited a month or two Went in and seen another nurse practitioner only to be laughed at again And so if I could provide any advice for women out there who struggles with trying to navigate the medical Field and trying to seek diagnosis is make sure you advocate for yourself Make sure you are very very very adamant about the treatment that you need the people that you need to see If they're qualified or not do not settle for anything less than Medical professionals who are qualified to see you and listen to you and treat you Because I would have saved so much time so much pain and energy if I had made sure an Advocated harder for myself, but I was naive and I trusted the medical system would take care of me and That couldn't be farther from the truth and so when I went in and saw this physician she is specialized in women's health I told her about all my symptoms and immediately she validated me and She apologized to me on behalf of my experiences with the other medical professionals and when she apologized to me and extended true empathy towards me I remember like I was just in shock because I was already struggling So much at this point and so used to medical professionals laughing in my face I was ready to defend myself and advocate for myself also all well-feeling extremely hopeless So when that physician immediately apologized to me and said We will get you the help you need. I'm sorry you experienced That up until this point. I just sat there in shock and Started tearing up and I just was silent. I didn't know what to say Because immediately I wanted to say oh, it's okay I'm here now But in reality it's not okay. It's it's really not okay and I have every right to feel extremely hopeless and disappointed and failed and I was just kind of sitting there letting myself soak up the empathy that that physician was giving to me And so she told me you know if you think you have endometriosis, which I think you do as well I will refer you to an endometriosis specialist and so she did she referred me and At first I didn't hear back from them. I didn't receive a call like I was supposed to For a few months and so I had scheduled another appointment with the same physician to check up again And she was like that's so weird that they didn't call you and she made sure to contact them again And they finally reached out to me within this past month And I finally went to see that specialist of endometriosis Years later almost two years later and By the time I went in to see her I almost felt like I was I was almost gaslighting myself at that point and I was slipping into that mentality of I don't have endometriosis. I think I'm just perhaps Making it up and I won't get treatment for it and I almost like went to go delete my video on YouTube of the endometriosis recipe Because I was like how dare I identify with this chronic illness when I don't have it and that was my mentality Going into that That meeting with that specialist And so when I went in she gave me a pelvic exam she asked me questions about my symptoms At that point I didn't even bring my journal in because I was like I don't have it I don't need to care about this appointment I'm just here to see her because I waited so long to see her so I may as well go in right And I kind of just like briefly listed off the main symptoms. I could think of over the top of my head And within 15 minutes of the exam she was like you have endometriosis when do you want to schedule your surgery? And I sat there And I had a really really weird intense moment Of Derealization where I just felt like I wasn't in my body Or is it called depersonalization Anyways, I felt like I wasn't in my body. I felt like I wasn't experiencing real life And I just sat there quietly and I was just staring at her And I didn't know what to say because I wasn't processing what was happening And I just remember sitting there and finally like mustering up enough Energy to like go back into my body and say Well, how do you know I have endometriosis? And she was like I've been doing this for years. This is my career. I am a specialist. I've seen countless of women with endo I know you have it She said of course the only way to officially diagnose it is to have the surgery, the laparoscopy, but I am 90% sure you have it. And I just felt like I was in denial at that point because I've been gaslit by so many doctors and nurses at that point that I just couldn't believe. This specialist, like she is the one person I should be listening to, and I almost felt like I couldn't trust her or myself. And she was just like, "I am so sorry that you had experienced what you've experienced up until this point. Doctors time and time again fail women like you, and women like you sometimes never even get to my office because of that, because of the ignorance and misinformation doctors have on endometriosis. They don't know enough. And it's such a disappointing thing." And the doctor, the specialist that was telling me this seemed just as frustrated as me. She just seemed like she was very disappointed that it takes women like me so much to get to this point. And even when we do, we almost are like a shell of a person by the time we get to our office. And sometimes we get so gaslit that we may even believe that we don't have it as well. And she just kind of anchored me back into reality and she was like, "You know Irene, these are the treatment options. I can give to you. This is what we can do for you." And it slowly like reality started to sink back in and she was like, "We could schedule your surgery for November 4th, which is very soon. It's in a few weeks, right?" And she was like, "This is all the stuff we can do. Let's schedule that in and I will call you in October to go over your surgery plans and all that stuff." And we got that done. We got the surgery scheduled. And it didn't take me until the next day for me to fully process everything that happened. I was still in a state of disassociation for like a whole day of what was happening and unfolding in front of me. But you guys, this is the importance of self-diagnosing and self-identifying all of your symptoms, all of your health issues. Because if I had not deep dove into researching endometriosis, I would not be here. If I had not advocated for myself, I would not be here. If I had listened to all of those nurses that laughed in my face, all of the doctors that told me to take motoring and birth control and I will be fine, I would not be here. My chronic illness would have worsened to a point where who knows what would have happened to me. I could be infertile in a few years. I could have had my bowels be obstructed to a point where I don't even know what would have happened to them. I don't even know what health issues would come out of the untreated endometriosis. If I had not advocated for myself, if I had not stuck to my guns, stuck to my self-diagnosis, stuck to those identifiers that I really resonated with. Sorry. I'm like, and this is why when I see people out there shunning others for researching their health issues, what they may have, it's so disappointing because it's really, really not okay. It's not reasonable or healthy to put 100% of your trust in medical health professionals. Women are so commonly misdiagnosed and it costs us a lot of us our lives. A lot of us are mental health. Why is it bad for someone to know exactly what they struggle with and to not settle for anything less than the treatment plans that will actually help them with what they are struggling with? If we genuinely don't resonate with the fact that we are being diagnosed or misdiagnosed with something we don't have, why is it wrong to advocate for the right treatment plans? It's dangerous to be treated for something you don't have. It's dangerous to go untreated for something you have. They're not out to treat themselves because at the end of the day, you can only seek professional treatment, medical treatment, mental health treatment from professionals. So people who go out and self-diagnose or self-identify are not looking to not have professional help at all or whatsoever. We want professional help, but we want professional help with the thing that we are struggling with, not the other way around. You know how many people end up taking medication for something they don't even have and it actually deteriorates their mind and their mental health because they're told something is wrong with them when it really wasn't. It's never wrong to seek a second, third or fourth opinion. Maybe even fifth or sixth, especially if you're so commonly misdiagnose or not perceived in an accurate way, which a lot of women struggle with because our society is so misogynistic. A lot of the DSM-5 criteria, a lot of the diagnostic criteria is so sexist because they mainly research male patients and even in women's health, it's so sexist. And because of that, the accuracy of your treatment and diagnosis is not up there where it should be. So it's so important for women in general and even guys watching this or non-binary to really advocate for your health and your mental health. You should know more than anyone else out there what your symptoms are, what you're struggling with and what you think you may have and bring that into your appointments, tell the professional what it is and be open to what they say. Open in the way where if they are incorrect and inaccurate, you will go seek out help elsewhere or open in a way where they actually listen to you and give you a diagnosis you resonate with and they're giving you your treatment option and you're open to those treatment options. Either way, it's your life, it's your body, it's your mind. You have to deal with it. Never settle for a diagnosis or a treatment plan that you don't resonate with because you are the one receiving it, you are the one being impacted by it, it's your life. If you are not aligning with the opinions of a doctor or a psychiatrist or a psychologist, it's your job to advocate for yourself and to go elsewhere to seek other opinions. In order to receive the help you need, it's so important. And in order to advocate for yourself, you need to know your own symptoms to a T. This is where self-diagnosis is important. It's important to receive the correct treatment options and diagnosis because the last thing you want is to go untreated or to go treated for the wrong diagnosis because that is also just as harmful. So the last thing I wanted to talk about briefly was, and this is very personal, and I will talk more about it as my journey goes on, but recently I've been really, really coming to terms with the fact that I think I am autistic. And I won't go into the full list of why I think so because I am in the midst of seeking a diagnosis, right? And as that process begins to unravel more, I will begin to make more videos talking about my experiences. And when I do get that legitimate professional diagnosis, I will start to really put out videos out there of the process of getting diagnosed, the process of getting misdiagnosed, what my autism looks like, how my autism transformed as I aged with masking, you know, all of that stuff. I will begin to talk more about that as I get more answers, but just know I am in the process of seeking a professional assessment, a professional evaluation for adult autism in specific. And I really want to briefly touch on this because adult autism and the assessment to determine whether you have adult autism is very, very rare. Professionals out there is very sparse in this field. I had spent so long researching professionals in my area who are qualified to perform these assessments and I have not found any in my area. I found the two closest assessors are extremely far away from me. And I have to seek help out of county, which as you guys know, if you're in America, it messes with your insurance and all of that. So I am starting to get everything sorted out and I really want to go into the details of that, you know, how to find help in regards to seeking a diagnosis from a professional in adult autism, what the assessment looks like, and also going into my own personal autistic traits. But just know I'm getting it all sorted out, I'm getting it taken care of, I'm having a lot of empathy and patience with myself in this process. And regardless of how hopeless I can get, I am avic-- very, very strongly for myself. Because the truth of the matter is, is I've been extremely failed by so many medical professionals, mental health professionals within the realm of endometriosis and neurodivergency. The first person I saw to diagnose me with ADHD told me I had borderline instead of ADHD. Genuinely, I did not resonate with that. So I saw the second opinion and that psychiatrist told me I did have ADHD and now that I'm bringing up the topic of autism to my psychiatrist, she immediately discounted my concern. She told me I didn't have it because of the way I looked and continued to go down a list of very ignorant ideologies of what autistic individuals look like and how I don't fit into that image of autism and took it extremely personal for some reason when I had communicated to her that I felt like it wasn't fair for her to discount the autism just because I didn't look like I was autistic and she started to tear up and get extremely mad and emotional and tried to tell me I had a mood disorder because of the way I communicate. That interaction was extremely not okay and maybe I'll go into more depth on it in another video, talking more detailed about my autistic experience. But little to say is I just left that appointment telling myself although that experience was extremely invalidating and disappointing, I really resonate and know that I have autism that was undiagnosed for my whole life and I just need to find a professional that knows what they're doing and is able to hear me and see me and give me the diagnosis and treatment that I need and resonate with. And so where am I on that journey of getting that autism diagnosis? I found a neuropsychologist who specializes in giving assessments for adult autism amongst other things as well, like ADHD and dementia. But I had a consultation with him and he gave me a bunch of tests to take and he went over them, asked me a few questions and he said, "Irene, you are qualified to get assessed for autism because you have a lot of autistic traits." And he was like, "I see your insurance doesn't cover me and he gave me advice on how to navigate that and now I'm in the process of getting, hopefully getting him covered by my insurance and navigating that realm." And hopefully within a month I will be able to have my first appointment session with this doctor, this specialist and he could give me that assessment. However many assessments he needs to give me to determine whether or not I have autism and what my autism looks like for me specifically. But yes, I am in the process of getting that all done. I am in the process of getting that surgery for endometriosis. It's a long journey to get to this point. It's a really hard journey to get to this point, but I am navigating it. I am being patient with myself and I am therefore making this video to help encourage women out there or people out there who have struggled so profusely in this process of getting treatment and getting diagnosed. I understand you. I feel you on such a deep level. I'm so sorry. I know it's such a struggle. But I understand, unfortunately, I understand. It's a double-edged sword. We can begin to build a community where we can understand each other and give each other advice and strength to get through it and get the treatment we deserve in need. But also, we shouldn't have to struggle this hard to get to this point. But that's just reality and we got to make the best of it and navigate it as best as we can. But the more experiences people put out there like this, the more tools people have to navigate that journey with less confusion. But yes, that is a little update on me and my own personal journey with my medical health, my chronic illness, seeking the diagnosis and treatments that I need. I'm still very much in the midst of it or maybe in the tail end of it. But getting to this point wasn't easy. And I extend the question out to you guys, what's something you struggle with that is very hard for you to seek treatment for? What is something that you experienced within the medical realm that was extremely invalidating towards you and extremely discouraging? I would love to hear that kind of stuff in order for us to all comfort each other and provide that space for each other. Have any of you been misdiagnosed before with something that you genuinely didn't resonate with? What was it like for you guys to navigate that? And have you since then found the diagnosis that resonates more with you? Feel free to comment in your experiences down below. Feel free to ask any questions in regards to endometriosis or autism so that in the future when I make more videos following up on my journey with it and going into details about certain aspects of that journey, I can know what you guys are wanting me to talk more about and answer. Leave it all in the comments below, ask me anything you want, and I will be sure to reply to you guys or make future videos going in on those specific questions and comments. But other than that, I hope all of you guys are healthy. I hope all of you guys are doing okay coming out of this Mercury Retrograde. Whatever downloads you've gotten throughout the Mercury Retrograde, I hope you're implementing that into your life slowly but surely with patience and empathy for yourself. It's okay to transition slowly in and out of these energetic shifts. Have patience for yourself in those moments. Do what you need to ground yourself and be there for yourself. And don't feel the need to rush into anything with anyone or any situation. Follow your instincts, honor yourself because that's all we can do, right? Anyways, I will see you guys in the next video. Thank you for listening. Thank you for tuning in. Bye-bye. [Music]