16th Annual Patient Day
Your Mother Should Know, Your Doctor Should Know Better!
Patient Day - March 2, 2025
Einhorn Auditorium
Lenox Hill Hospital, New York City
Scientific Director
Dan Martin, MD
Program Director
Tamer Seckin, MD
Your mom. Wendy Krispy is a dedicated advocate and caregiver whose journey with endometriosis began when her daughter, Peyton, was diagnosed with Endo and also determined to find the best care. Wendy immersed herself in researching treatments, therapies and surgical options, ensuring that her daughter's path to healing was informed and empowering. So give it up to a mom that is really fighting the bright fight. Sorry, sticking together here. Oh, sorry guys. Really, really stuck pages. Alright, next up we have Stephanie and Farian. Please join us. I realize that they didn't give us bios, sorry about that. But please, we're going to have you introduce yourself and tell us a little bit about your journey. And we have it saying Elsa, Elsa, Pierpont, and Virginia Pierpont. Thank you for being with us today. And I love those shoes. So there wasn't a lot of room, so I'm going to be back here. I hope that's not awkward for anybody. Just to break in to the conversation, since we had a little bit of getting to know you, I'd love to hear about very briefly some of the daughter's experiences when they first had suspicions that something was not right with their bodies. Who's ever most comfortable can start?
I'll go, I guess. Glad enough. Sure. Oh, try to turn it on. I'll give this one to you. I'll start because my experience was just really recent. The biggest thing that really got me was, and maybe TMI. My mom has a whole thing about TMI, but I was having sex with my boyfriend and ended up in the hospital pretty shortly thereafter, and it ended up where every single time that I was having sex or being intimate with someone, my ovaries were flipping and things were twisting. And the cysts that I was growing on, one of my ovaries was bursting and kind of started my whole education around what endometriosis was and why cysts on your ovaries are a bad thing.
Lesions, although lesions.
Hi everyone. First of all, thank you so much for being here. It means a lot to us. So for me, my first encounter with pain was at my first period, which was when I was 12. And I remember being on vacation with my family and just being like, wow, this is a lot more painful than they said. And this is really underestimated. I just lived with it for years and years to come, but I was always taking Advil for my pain. When I was getting my period, I always had lower back pain, always experienced lower pain in my lower legs, but I was very lucky in the sense that I was always listening to my body and I was lucky that I have a mom that was always encouraging me to listen to my body. So I was missing school for days at a time and there were no consequences. I kind of just let my body take its course and then one thing lent to the other. And that's kind of when I ended up on the endometriosis journey, when I had a UTI and it wouldn't go away for after six months of antibiotics, went to every single type of doctor and ended up finding an amazing doctor that would help me. And here I am today.
Hello? Oh yeah, I won't say that much. You just heard a whole novel about me. But yeah, I was diagnosed with stage four endometriosis in 2021. I was 22 before that. I had no idea what endometriosis was. I didn't think of myself as someone who had incredibly painful periods or anything out of the normal. Looking back at it now, I kind of realize that was absolutely going on and I just was not aware that what I was feeling wasn't the norm. But I found out about endometriosis when I had four endometriomas that needed to be removed. I went through a really bad surgical experience and honestly, because of my mom and because of my boyfriend who is in the audience, that led me to find Dr. Kin and an amazing team who helped me learn more about endometriosis and gave me hope that this wasn't a life sentence of absolute terrible pain every single day. So I'm excited to be here.
Thank you for sharing your experiences for the moms. When you watched your daughters initially get sick, what was that experience like? Did you know something was wrong, that this wasn't a one-off kind of thing?
Dawn, can you hear me? Yeah. So for me as mothers and as women we say, well, it's just period pain. Just learn to live with it. It's part of being a woman. But when it took so many years for us to finally find the problem, every month was agony, every month was tears, every month was, well, what's wrong with my daughter? And then finally, after seven years of going to so many different doctors, urologist told us that if it's not a kidney stone and my in-laws all hads kidney stones, if it's not a kidney stone, then you need to go see a specific doctor who deals with endometriosis. And I said, what is endometriosis? It completely came out of the left field. So that was finally a light at the end of the tunnel for us until we found a doctor that could take care of Stephanie.
I think there's a lot of stigma that comes around female organs and having to listen to them, especially in the financial world of which my daughter is very heavily invested in and my husband and it's always, I know she says I have a hangup with TMI, but a lot of men will say TMI, and that's too much information. We don't need to discuss it, but really, in fact, I believe we need to discuss more. I had no idea what it was. She was dying in the car and giving me her last rights and I couldn't even imagine what was going, I had no idea. There's no way I could have driven a car. We were in an Uber, I couldn't have driven with what was going on and we made it to the hospital and she's a new person. I hope it doesn't reoccur, but I'm so happy you're at the Cold Spring Harbor lab.
That's a very good start. I see a great future for all these incredibly smart doctors and technicians and I feel that ELs is in great hands now, but I'll tell you, I had no idea what this was about. And when Dr. Sachin drew me a picture of what lesions, the endometrioma bursting and spreading lesions all over the universe that normally they would just do hysterectomies, and I find out that five of my girlfriends at home had all had hysterectomies because the doctors knew nothing about the special surgeries. And yeah, it's really an amazing place to be right now. And thank you all for all your work. Alright.
My experience was I think maybe a little bit different. As Peyton said, she didn't have or wasn't presenting with significant major pain, anything that we would think would be abnormal. It wasn't until I met Dr. Amanda Chu that she said Pain is not normal. And so a woman of the Gen X area where you just live with it, it's part of being a woman. And so I didn't realize that that was not okay. Peyton, we live in south of New Jersey and Peyton, when she graduated, she got in the car and she went to New York, fulfill her dreams and she has never come back. And I get a phone call one day. This was during Covid, they had decided to go shopping. It was the first experience outside since Covid. And I get the phone call from her boyfriend, she's doubled over in h and m
And she's screaming, I'm in South Jersey. Two hours away, about an hour later, he calls me back. He's like, yeah, it's not getting any better. Get her to the emergency room. I don't really remember what happened between that phone call and walking into the er. I think it was just lightning speed. But my reaction to when they said she probably has endo was terror because I've heard the word, but wait a minute, that's scar tissue. What's causing this? And then the journey that we went on was a true roller coaster until we found Dr. Kin and DR two. And like every mother, right, you go deep dive, went into the rabbit hole and if I could have taken every ounce of the pain, give it to me, don't give it to her, let me handle it. And I think maybe that's what Peyton's problem was, is that she has a very high threshold of pain. I think Dr. Chu says to Peyton all the time, do you really feel that good? Or maybe you don't. So because she has a high threshold of pain, what would've debilitated everybody else with endo was okay to her, but it's not Okay. So clear terror when I heard the word.
Yeah, no, it is a terrifying disease, especially when it seems to come to a violent eruption of sorts and get you into the ER completely puzzled and bewildered to what is going on with your body, especially when you are presenting as healthy and vibrant young women to the mothers. What advice would you give to other parents who suspect their child may have endometriosis?
Well, since Stephanie's symptoms really started as a teenager, and the first doctor we would go to was her pediatrician. So every month was the same story, same pain, oh, it's just women, period pain. And seven years later, fast forward when we found out she had endo after it was clarified, it was endo. I went with her pictures, her report, I went straight to the pediatrician and I said, I'm not here to tell you how to run your business nor your office, but as a doctor who was treating my child, I am giving you the tool that if a daughter girl comes with pain every month, don't tell me. It's just in my mind, you should be more aware that maybe this teenager has endometriosis. So for all the doctors here, for all the ones that are connected to pediatricians, I truly suggest and recommend, please teach these pediatricians the telltale signs of pain because it's not normal for her to have a UTI every month for seven years
Or gyno too,
Or gyno. It's true or gyno. So that is my advice to mothers or parents.
I think my advice and the best advice that I ever got was from my own mother. When Peyton is my youngest, my older child, my son, when my son was sick, just like sick, nothing big deal. My mother said to me when I took him to the pediatrician and the pediatrician just said, oh, you're a first time mom, he'll be fine. My mother said to me, the doctor knows the book, the kid, every single mother can look at their kid. I can look at her eyes, I can look at her nose, I can look at her ears. No, she's hot, she's sick. I can see it. So my advice is for all the parents out there, trust your parental instinct. You know that kid. And when I told my mother who's an rn, because this all happened so fast with Peyton, so it really blindsided us. What she said to me is, you know what to do, put your head down. We will figure it out. And when we figure it out, then you can fall apart. But you cannot fall apart. You need to be there for her. She can fall apart, but you cannot. So as the parents trust yourself because you know that kid better than anybody else,
That's a really good comment. You really, as mothers, you need to trust yourself because you have all the instincts to hold you strong as these girls are crippling around you. Like I said, I never thought I was going to get to that car ride. And the next thing you know, we were in the hospital and you just by their side and it's coming back and you're hoping, and it's always something else, but with the trust of the child will get through it, the trust of the doctor who is a specialist, you do get through it, but there's not a lot of people out there, especially a general practitioners who know about this upcoming field. That's why it's such an exciting emporium right now, symposium,
I'll just comment because I really do owe it to my mom. There was a good chunk of time where it was my summer break and I really wanted to take that time off. My mom said, no, we're driving back from the Berkshires on our vacation and we're going to go meet with Dr. Kin because he said that it was very vital that we need to get the surgery done. And my gynecologist had said, if it doesn't hurt and you're not in serious pain, then you'll do the surgery when you need to do the surgery and everything else will come in time. But my mom really was the one who pushed me and said, no, this is unusual. You shouldn't have a cyst on your ovary, you shouldn't be in pain. You need to go see the specialist. And we're driving back and cutting our vacation short to do that.
And that's a perfect segue into the advice from the daughters. What do you wish your younger self or other young girls who are struggling with, let's say, what could be symptoms of Endo knew about advocating for themselves?
You're never being overdramatic ever. If every day of my life to this day still am like I'm so over dramatic. I actually remember after my surgery when I had my check-in, I talked to Dr. Kin, I was like, was I being overdramatic? And he was showing me all these pictures. He was like, you were not being overdramatic. And so I think that's something to remember too. And also to read other people's stories. When I first was diagnosed with endometriosis, I was in so much denial because I was like, I don't have a lot of those classic things that are the first three bullet points when you see Google. And it really takes listening to other people's stories and hearing what they went through to be like, oh wait, yeah, that random pain that I thought had nothing to do with endometriosis. Oh, you mean that? That's also it too. And so it's a lot of that and just kind of trusting yourself, believing yourself. If you don't feel like something is right, don't belittle it. Don't push it down. Don't think, oh, this is just whatever. This is just how it's supposed to be. You get to have a voice and you get to stand up for yourself.
I would say just start talking. Start talking to people about your symptoms. Start telling your friends, your family, your loved ones about what's going on. They might refer you to a friend, they might refer you to a doctor. That doctor might refer you to another doctor. That's kind of what happened with me. So just start speaking, don't hold your feelings to yourself and that's what I recommend.
All of you seem to have very open relationships with each other. You seem to have being able to communicate openly, have real talks about what's going on in your bodies. And not every family has that dynamic. How would you say to, let's say a daughter or someone born with a uterus who is really struggling to have that support from a guardian or a parent. How could they facilitate that conversation to say, we don't talk about periods here, we don't talk about what happens below the waist, but I know something's wrong with me and I need to explain this to my mom or my dad. How could they open that dialogue,
I guess, for daughters or for mothers
Either? How do you start the conversation?
I mean, luckily I am very close to Stephanie, so she was never shy about telling me the pain. She also has a very strong threshold of pain, but it's okay. It's okay to be in pain and it's okay to share your pain because we were once younger and we might have known people that might have had that. I never had any of these issues in my family. So for us, we had to discover things. It took long, it took seven, eight years until we her first surgery. But don't be shy. As you said, having pain is not okay. That's it. It's not okay.
I don't understand why it's a problem to communicate. We teach our kids, unfortunately, in the world that we live in, it's a scary place. We teach them a lot of things. We teach them to hide under the desk. If they hear something in a hallway, why can't we teach them to talk about what's going on with their bodies? We as moms or dads or caregivers, we can only see the external side or if they're retreating or if their grades go down. Why are we afraid to have these conversations? We have a conversation about everything else. We talk about TikTok or we talk about politics. We have to talk and making it okay in a safe place to talk about reproductive health and what's going on. And I really think, and as a mom of a boy and a girl, I really think that we have to make sure that the boys are educated. They're the caregivers. They're the ones that are going to see what's going to happen with them more than we will. So we have to teach the boys patience and kindness and understanding. So I think we have to teach the understanding that it's okay to have the dialogue.
And I would also say remind them that they also came from the baby box. At the end of the day, we all came from the baby box. And so if we don't protect it and constantly talk about it and address the issues that arise with it, then we're all kind of sunk.
I also think I feel incredibly lucky to have such a good relationship with my mom and I always have as well as other women in my family. But if you don't, I think it's important. Talk to your friends. The amount of people, my friends I've talked to about my endometriosis that after talking to me, they've been like, oh, you know what? Actually I think I might have that too. Or something similar. And I've had multiple friends find out that they've been diagnosed later with endometriosis or PCOS or something in this nice little ballpark of chronic illnesses that people don't really talk that much about. So I would say that yes, it's so important to have family support if you can have it, but if you don't feel like you have a strong connection with your moms, your dads, whoever, seek out the people in your life you can talk to. Because I think even just talking about it when you think this person's not going to understand, they might. And I think that that is really helpful and can be very beneficial too.
Thank you so much. This has been a very impactful, insightful panel and thank you for being so candid and honest and vulnerable about a really hard time in all of your lives. And I wish you all good health. Thank you so much.
Thank you.
Thank you. Thank you so much. So let's get back to the title of this meeting again, you're not here by accident. I want to record this because I'm confident and I'm very curious about how the answer going to be. My question to you, first of all, the conference name is endometriosis 2005. It's time to underline. Your mother should know not to depreciate the value of just the opposite, to spread the word, what your doctors should know better. So two things popped out here. These people, they know what they're talking about. One said, your pediatrician should know you should go and take that thing that my validation point is the evidence of surgery. What I had and what you've been telling me I was okay is in my head, doc, it's in your head that you need to change. So you have to give it to her, make her feel that she has missed something.
Look, I wasn't here. If it wasn't my patient, I missed so much. I felt so doctors should feel bad and I felt bad when I missed things and my patient came to me or whatever. But I am realistic. I'm true to myself. I really think I'm true to myself. I criticize myself and I lose sleep over. But those are the patient I had. They taught me that. They also trusted me to go back and I looked, I said, yeah, I did miss it. And I start recording my cases. So anytime I go back and it becomes a video server, 10 years later, I can find that little video and I can tell what happened. So in that sense, the doctors pediatricians should know, yes, they should know and they will change. Some will change. I think that's the first thing because patients are innocent. Of course the mothers will take care of their kids.
They do the best. But if the pediatrician doesn't say, your doctor doesn't tell you what is right, what's wrong, you will be sidetracked to one avenue or IBS your diet, your this. It's in your head. This that in New York it is. Maybe you'll end up with psych. I swear to you, I have seen 12-year-old kids in this town of New York City where everything is available on morphine patches because of pain. I swear to you, you don't know what's going on out there. You only know your story. So that's one. Doctors should be educated. Okay, my question is to you, your mother should November say, your mother should know, how many of you here have endometrial in your family, mother, grandmother, or almost all excellent up there. Up there too. Okay, good. So as if I'm going to be closing, but I just want to thank you, it's almost five after. Are there any comments from the crowd? We'll take three or four comments if people wants to put their heart and say something. Anyone to the panel too? Lady over there. Thank you. Thank you. Question. So it seems like, oh ma'am, there's a microphone. Is this the only microphone you have here?
Oh, we have one more speaker. I didn't know that. Oh, sorry.
Are we still okay? We have
More speakers. I would like to hear someone talk to more of the fact about environmental, especially for women. I have 25 years in finance and I moved to science for a quieter life. And I feel like mine was all environmental, was stress had to do with my racial background being a woman. I did not grow up. I grew up in Irvine, so it was a planned city, safe, clean West coast. So it wasn't environmental heavy, toxic. That wasn't my issue. Mine was, I definitely feel like mine was stress and environmental. And I can tell you exactly when all my stuff started happening and I can pretty much blame it on my job. I would love to hear people talk more about that and how to deal with that. Because I'm the only one in my entire family on both sides, and I have a huge family and I'm by myself. I grew up in the suburbs and now I'm living in a big city again, the only one living in a big city. And I probably of my family have the most stressful environment.
I mean, I can talk to it Dr. Kin, but I also don't want to downplay those who have had it for since they were a kid because I could have potentially had it. Apparently it's potentially genetic as far as we know. But mine really, really developed after a stressor of mine. So three years ago, my sister passed away and that's when my cyst started growing and then started exploding and then sending all of these lesions and started creating serious inflammation that Dr. Seskin and Dr. Chu fixed. And one of the first meetings that I had with both of them, they actually said that while we don't really know the exact cause, it could be genetic and there's a lot of also women who've had it for years and years. Stress could be a significant trigger of why it becomes so painful and bad and why it becomes a case where you need to get surgery.
I'm right there with you. I work in a very stressful job and work in finance. And I think the death of my sister also triggered a lot of stress that helped the inflammation grow. And cortisol levels. The cortisol levels, like I'm sure were up off the charts and doctors were treating the cortisol. Yes, and the doctors were treating the cortisol. And I think that I was on a lot of medications. I was on eight different medications, treating for everything from UTIs to acne to depression, to you name it. I was on everything. And since my surgery, I have made it a very apparent choice to not only try to step back from my work, change my environment, change my behavior to decrease cortisol levels, to make sure that it doesn't come back. But also the surgery was also very much of an eyeopening part of it for me, where it forced me to take that reset and focus on yoga, focus on healthy eating, focus on everything, everything just, but my body, and I can't say I've mastered it yet. I'm back in my finance job, but I think about every day about how I'm trying to reset myself and make sure that I protect my baby box. Because at the end of the day, that's where all of my problems were stemming from. And now that doctor, they fixed it. I'm starting to feel a lot better and I'm off of all of my medications. Five to nine.
Thank you. I think we have another speaker and then I will encourage everyone to stick around because we really want to immortalize this time together and take a group picture, all of us here in the end before we go to our final little session that we socialize in a nice French restaurant here. Thank you.
