Endocast with Dr. Boz - #Podcast Series 1

hello everyone I'm Dr Bas welcome to the endometriosis Journey Sarah is here with us to talk about her journey Sarah welcome to the podcast thank you so much for having me thank you for sharing with us today of course first of all I would like to ask you one simple question to start our conversation how was your life before your endometriosis diagnosis my life before I knew I had endometriosis was just consistent of pain and I was always told that this pain was normal from a young age to where I started menstrating and I was bleeding through everything having severe pain I was always told that's a normal part of Womanhood and I just had to suck it up and deal with it and then as I got older it got more and more debilitating I got to a point where I had to drop out of school because the pain was so unbearable I could barely get out of bed I had to drop down in my job I had to go on a leave of absence endometriosis for me before my surgery just equated to complete loss of my life okay sorry about hearing this about these things but it's I want to make sure that the clear for our listeners so who diagnose you have endometriosis or you search that you think that you have endometriosis and seek an opinion from the doctors well the way that my Endo Journey went is my first gynecologist told me I was a liar and she said that if I was in as much pain as I thought I was in I wouldn't be able to drive to a doctor's appointment let alone sit for an appointment my second gynecologist misdiagnosed me for PCOS even though there was no proof of PCOS she said that's the only thing that could explain it after that I started looking for my own answers and that's when I stumbled across endometriosis my first doctor agreed with me and took me to surgery but failed to remve as much as she could and at that point that's when I started seeking you out because I needed a doctor that a would take my endometriosis seriously understood how debilitating it was and that it wasn't just all in my head and I wasn't a liar and somebody who would fight for me and fight to treat me as best as they could okay I understand very good description so also I want to make sure that the first surgery was done before you see me right yes so when was it done just give me some idea that you know the diagnosis and then the doctor believe you that you have endometriosis and take care of you at the moment but are you comfortable with the general gynecologist to operate you I know that you have a you are a nurse you have a degree for nurse and then you are trying to you know pursue about the nurse practitioner so for your stand for your standpoint that even if being a nurse so you still you didn't get your all the answers from the other doctors and then they told you that it's your in your head the pain you just going to take the pain and then do we cannot do anything about your pain so are you how comfortable are you the first surgery done by the general gynecologist they are not specially trained by the endometriosis Fields so like you'd mentioned I've been a nurse now for going on 6 years in my six years of working as a nurse going through schooling I never was taught about endometriosis it wasn't until I looked it up myself that I found out what this disease was and in that I did not know that endometriosis Specialists were a thing I went in and my gynecologist just told me this is the surgery we have to do this is the only way we'll know and I honestly did not know any better I did not know that there was somebody above a standard gynecologist who knows this breeds this studies this and this is all that they do because if that were the case did my first surgery help me get that diagnosis absolutely but I would have just went straight to you to try to not only just get that answer but to get the surgery done properly and correctly the first time excellent I understand I'm sorry about that you have one surgery before me but at least you are the you educate yourself you Advocate yourself that you know something's not right even if the first surger is done but still you have experienced the pain that things I I'm assuming that things are push you to see endometriosis specialist is it correct yes so after my first surgery or actually tracking back before the first surgery the symptoms that I was experiencing constantly were right sided pelvic pain it felt like a soft ball was ready to explode I was having rectal pain I completely went amenic I lost my period on top of the other beautiful endosym symptoms of the bloating the

gastro intolerance all of that stuff and my first surgery it got rid of those symptoms for about 3 months and then everything started slowly coming back and that's when I said you know what clearly I'm looking in the wrong direction I need to see if there's somebody that knows better than a standard gynecologist and like I said at the time I did not know endometriosis Specialists were a thing and coming to you that's when I realized that there are people out there that 100% care about this and want to treat not just the disease but the patient you were the first doctor that treated me like a patient rather than a nurse yes thank you very much so definitely you are basically standing out good points number one that you know what I'm always in my practice I am always focusing on the patient symptoms so what that experience about the pain it is usual that you know everybody knows that endometriosis coming with the painful periods you know painful sexual activities any bowel problems and urinary frequencies and these are the very complicated symptoms that you don't even understand what is what's the problem where are the causes of the problem so this like sometimes takes like a s to 10 years almost decade to get diagnosis even if you have a like a Nursing degree still you don't have an idea what's going on with you so at least in the pre previous doctor give you some diagnosis this is also starting point but whole point about this podcast our listeners that I want to make sure to emphasize that this symptoms is not normal the pain is not in your head and then the pain you cannot normalize your pain if you experimen these things sometimes you need to find out and be your own Advocate thank you very much for sharing these things with us first of all so let's go deep diving about your endometriosis symptoms again so after the first surgery you mentioned that you still have some pain after 3 months your pain starting over and over again so you came to me and I was you know talking to you at least a 1 hour consultation examine a full body examination to make sure that we are not missing anything after then you decided to have a surgery done by me yes so are you comfortable at that moment that you get all the knowledge all the information all the inform consent that you're ready for the second surgery I know that it's being a nurse being a patient say surgery is not always a good you know it's like a scary for everybody but sometimes surgery is the best option absolutely am I thinking correctly absolutely and coming in to visit you it was a completely different atmosphere than any other doctor's office I've been to like I said I've been working as a nurse for six years I've been around many doctors been around many consultations and it's very scary to go from the nurse that takes care of everybody else to being the patient looking for somebody to take care of you and I went through multiple doctors telling me no it's not a gynecological problem you need to see a gastroenterologist or a urologist nobody had answers from me and it didn't seem like anybody seemed to care to find answers for me it wasn't until I came to you that I felt like somebody didn't look at me just for my job title a lot of other doctors looked at me and said oh you're a nurse you already know what's going on you know how this goes when I don't I've worked six years in cardiology I know nothing about reproductive Health you were the first doctor to sit me down and say yes I know you're a nurse but let me tell you everything that's going on and made me feel safe as a patient so leaving that appointment I knew that yes surgery was the right thing to do because you also caught things that my first surgeon totally missed and it I knew that surgery was the right route to go but also I knew that I hit the lottery finding the doctor I did that respected me and my time and my profession and my experience to give me that just attention that nobody else did yes okay thank you I really appreciate it what you're telling me about my practice but it's all about the again as a patient as a nurse so I not even thinking about your job title at this moment I want to make sure that I will get all the information to you I will provide all the my knowledge and then also B more thing I forgot to tell you that you know because when you came the first time you brought your original pictures before the first surgery when I look at together I said you know that area at some point probably incomplete surgery and this is the causing the problem and this all the pelvic pain all the symptoms so we you know we sit down 1 hour and then all the drawing the all the schematic pictures and then you know what Sarah this is my proposal to you for the probably getting healing better and feeling better after

my surgery and then thank you so much for the also relying on me and then trusting we did together the surgery and the surgery probably happened last August right it happened July 31st to be exact perfect let one day I'm sorry about it just one day missing but July 31st yesterday almost like the eight months after the surgery and then tell me about your how was your life right now after my surgery even the moment I woke up from surgery I felt different in the best way after my first surgery I couldn't really walk or do anything after a week meanwhile after your surgery I was up walking around in recovery doing laps around that the nurses were chasing me around um but I from the moment I woke up from that second surgery I just knew something changed and I got my life back I was not only able to go back to work and do even more and excel in my job in ways I never did but I was able to go back to school which was a big thing endometriosis held me back from and I am just striving in ways that I never thought I would I'm now more active than I've ever been I'm striving to learn more and spread more awareness about this disease I'm trying my best to be an advocate in this disease and while doing that I'm trying to also work on myself more because now I have the physical capability to do it I can go work out I can go run I can go hike I could do things I never was able to do before because I was always scared my endometriosis would hold me back excellent this is like a real things that I feel very comfortable and happier that the patient experience this kind of you know the lifestyle changes I think this whole point about this surgery and then lifestyle modification also coming together so but also I would like to discuss with you one more thing about the after the surgery you know you told me that you're immediately feeling some difference about the pain which is I think the cause of the pain the root of the disease is gone by me I remove it I have no problem about this one but I want to make sure that after then for the recovery phase that did you change any diet or lifestyle modification that you know I would like to advise my listeners that end endatus diet technically is like a Mediterranean diet or the anti-inflammatory diet if you follow these diets on instruction exercise also another big part of the patient's life I think it's it will get definitely get better I'm very happy and very honor that I operate you and also you are feeling better and then also this is the area from my understanding that very lack of awareness and it's getting definitely getting aware more and more but I think we should more and push our boundaries about that endometrial awareness is the most important part because we know that one in 10 woman is struggling about this endometriosis and misdiagnosis this mist and this these things are we need to put in our priority to get healed and then better for our community there's no reason that in the stage of medicine that we're in that a disease that affects estimated one in 10 women statistically they think it's even higher that it takes an average of 10 years to diagnose to me that's absolutely barbaric in the stage of medicine that we're in that a disease that we can see is so prevalent and so debilitating is taking this long just to get a diagnosis just to be even recognized and that's where I think doing things like this and sharing people's stories and even just you shedding the light on the realities of endometriosis it's so important because people can sit and read an article or a newspaper clip all day but hearing the real stories from the perspective of the patient or just as the surgeon that you've seen how people's lives went from Rock Bottom to they're able to reach the sky now that's what people are looking for and striving for all right yeah definitely you are 100% true so this whole point about this conversation you and me that you know make sure that we have more awareness about endometriosis I see all the time dismissed and misdiagnosed for the other patients I feel guilty about this patient I will try to have give my patient the best care for them provide the best excellent solution for them and everything's I think is going well as far as we sh out for the all the endometrio awareness and then this is the real disease endometriosis is not in the your brain or in your head the pain is real and then all I will tell my all my patients that the pain is the most important warning sign if your body is telling that I have pain and then this pain is makes you be your own Advocate and don't trap this

the system that you know just get the you know birth control or other options that is cure the disease yeah I think is the best thing is that get a good educational be your own Advocate get all the information and then try your best to see the best actor if you think that you have endometriosis and I think that's an important thing for patients to know because I know how scary it is to be a patient and to have somebody who is a doctor who you know you're in a vulnerable position the doctor really is the one that has the authority and is calling the shots and at the end of the day many people need to know that for every doctor that will close that door and say no to you there is another one who will take care of you just because one doctor says even for me my first gynecologist I don't believe you that I think you're lying the pain is not as bad as you say it is for her telling me no I have you saying yes that makes sense pain is not a normal thing let's look into it so I think patients need to not give up on themselves and realize that yes the doctor is the one that is taking care of you and it is vulnerable to be a patient but at the end of the day you are your own boss you have the right to say you know what I don't think you're giving me the care that I want I'm going to somebody who will yes you're right definitely thank you Sarah of course I appreciate it you're on the podcast thank you so much thank you sharing your journey and I'm sure that our listeners appreciated hearing from your experience about your endometriosis and you are helping them to make the best choices for their endometriosis treatments we've all got to stick together when it comes to this it's one in 10 but at the end of the day it's all of us fighting together for the same thing yes be fight endomet together exactly thank you Sarah I appreciate it thank you of course