Global Patient Symposium
Together for Tomorrow
March 18-19, 2023 - Einhorn Auditorium, Lenox Hill Hospital, NYC
Hi everyone. How is everybody this morning? Good, good. Uh, my name is Lexi Stevenson. I have been battling endometriosis since I was in middle school. I am an actress, and though I now live in Los Angeles, I, uh, am originally from the beautiful state of Maine. Um, I'm here today to <laugh>. Yeah, <laugh>. I am here today to share my experiences in both discovering I had endometriosis and living with it daily. My hope is that talking about my journey can aid others who find themselves in this situation. Um, endometriosis can attack you, your sister, your best friend, your mother. This disease, as I'm sure many of you know, does not discriminate. Um, knowing what to look for and what to do early on can save a lot of pain later. Now, I wanna preface, I do not believe in tmmi when talking about endometriosis or women's health.
I think it's really important that we feel open, comfortable to discuss all the details and symptoms so that medical professionals can diagnose and, um, treat to the best of their ability. Uh, I was diagnosed with endometriosis the summer after my senior year in high school, but I started experiencing symptoms while I was in middle school. I got my first period when I was 11, and by the time I hit eighth grade, my cramps were so severe that I was being sent home as the nurse in the nurse's office office obviously didn't know what was going on, um, or how to help me for that matter. Uh, from then on, now it was a game of will the cramps go away, or are we spending another night in the emergency room with doctors trying to figure out what was wrong? I went to several OB GYNs.
I mean, I really can't stress how many, um, and all of them swore it was just really bad period cramps. You know, a lot of, a lot of girls have bad period cramps. Um, I even had one suggest to my parents that I wasn't getting enough attention at home, and I think that was probably the most frustrating for me and my family. Now my mom has endometriosis, so we always thought that it was a possibility, but again and again, I was told that I was too young and that it was just really bad period cramps. Uh, now the night before my SATs, I was at my then boyfriend's house. We were in the middle of having sexual intercourse when all of a sudden I felt as though I was literally being stabbed in the stomach. He immediately ran to go to get his parents, and once I was able to move, they got a blanket around me, put me in a car, and drove to my parents meeting each other halfway on the highway, we lived about 45 minutes away from each other.
They transferred me into my parents' car, and then my parents rushed me to the hospital. At this point, I had been given an Advil and a Tylenol three. Once I was in the hospital, the ER doctor gave me morphine. And, um, at that point I was, you know, very, very, very little. And it was enough where it should have knocked me out and put me to sleep. But I was still crying in pain that night. There was a very young female doctor in the er, and for once I felt, me and my family were being listened to that night, I received my very first internal ultrasound. Um, the doctor informed us that I had had three ovarian cys rupture simultaneously, and there was a growth that looked like a cyst on one of my ovaries, and they couldn't really tell what it was. So she suggested that we go and see a specialist.
Uh, the specialist and my parents decided the best option was to go in and remove that growth to make sure that it didn't turn into something more. Um, this surgery, which was originally supposed to take 30 minutes, lasted seven hours because I had so much endometrial tissue that it had cut, it had tangled up one of my, um, inte like the lateral part of my intestine, and they had to go in and remove that. Um, the doctor performing, uh, performing the surgery was very surprised when he saw how much endometriosis there was on top of the growth that they had to remove. Um, that surgery gave me good news and it gave me bad news. The good news is that we finally knew what was what was going on. And, um, you know what, we were fighting here, but the bad news is that it was endometriosis and that can't be cured completely, which, uh, which sucks.
But what I now could do, um, through a lot of research, trial and error, incredible doctors and a lot of support, I've been able to find certain things that work for me and making living with Endo a little bit easier. Um, and I, that's the main thing that I wanna share with you all today. My number one lifesaver in life and on set. As I said before, I am an actress, so I needed to come up with something that would help me in these situations. And for me, it is my E A E K, my endometriosis attack emergency kit. And my kit contains number one, a heat pack. Always have a heat pack with you, whether it's when you plug in or an air activated one or both. Just always have one. I bring mine with me on set. Friend's house is traveling, and I even have one in my bag down there today.
<laugh>. Um, number two in my e a key e a e K is a leave Tylenol and any other pain medications I have, I always say better to have it and not need it than the other way around. Number three, for me, I keep, um, I keep mint tea bags in my bag, uh, because, you know, if you wanna, you can heat from the outside, but you also wanna heat from the inside to try and relax all those muscles. Cause that's the number one goal. Number four is essential oils. I can bring them with me everywhere. Lavender is my favorite, and if I can calm myself down, that typically helps. Um, there is a direct link between endometriosis and anxiety, and I have been blessed with both. So <laugh>, anything that I can use to help calm that down as well, um, is very helpful.
Number five, um, pelvic floor therapy exercises that are specifically, um, targeted towards the muscles that are involved. When you're having those cramps. I actually have these on my phone. Um, so I can, you know, when I am panicking, I can be like, okay, let me take a look at this and, you know, do that. Uh, I used to be embarrassed bringing a second bag with me everywhere and having to explain why, especially when I would go over to a boy or a girl's house who I had a crush on. It looked like I was just expecting to spend the night the very first time, which obviously wasn't the case. Um, I finally realized though, that it gave me a reason to bring up the fact that I have endometriosis and get that conversation out of the way, which leads me to the next thing and probably the most important thing that I will talk about today.
Um, uh, living with endo and being sexually active is not easy. It is extremely stressful, but it gets easier every time. When you plan on being intimate with somebody. Always have the endo, endo conversation before you get into bed with them. After all, if you're having that physical relationship with somebody, you should trust them enough to understand so that you don't end up in a dangerous situation. At the end of the day, information is key to living with endometriosis, knowing the symptoms, knowing if your doctor is doing the right tests, knowing the things that help both long-term and during an attack. Women have not been taken seriously for as long as there have been doctors. A hundred years ago, a woman could be committed to a sanitarium by her husband for being hysterical. But today we make, we can make our voices be heard, and diseases like endometriosis can be diagnosed and treated properly. My name is Lexi Stevenson, and I have endometriosis.