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
So look, I personally think this is the most impactful meeting we have as far as creating mass awareness because I'll be honest with you, this is a little bit funny, but many people who really activate, raise their voice, it dies very quickly. They have children or they're better. We kind of hear from them, but life goes on. They don't want to remember those days. But this part when it could possibly affect your loved ones or relatives, I think next stage in our foundation to create awareness. I think in this part we're going to make difference. Yes, we really change. Yes, surgery takes care of things. It is unfortunate, but also fortunately we have great doctors right now we didn't have before. There's so many doctors, but not everybody's in the same level. But there are really gifted people around that can do good job. In the same way as we turned our faces against pharmacy, this has to be, there's a next revolution we are facing that there will be something.
Look, if I give an injection to someone that they can lose 30 pounds in two weeks or two months, if meta science is that advanced, you better believe it. There is something that we haven't discovered yet. There is something there and we will get there and I'm very hopeful. So that's with the sentiment we said your mother should know, your doctor should know better, and this disease is hereditary, genetic. There's a huge genomics involved. It's molecular disease like many of us. Yeah. So I have the pleasure they're willing, they were willing to come all the way from California a family. I'm going to start with mom Hope, who's a very accomplished known corporate entertainment attorney in Los Angeles and a dedicated single mother of three children, Lily Brooks and Hannah. They're both have Endo warriors. Beyond her professional achievement, hope is a passionate advocate for ends awareness. Hannah is a 16-year-old high school junior filmmaker. Again, passionate advocate for entertainment awareness.
Lily Brooks is an 18-year-old older sister, well-known actress already singer songwriter, a passionate advocate for endometrial awareness. She currently stars as Lucy Ram on CB Ss de Young and the Restless and appears alongside Melissa hone. Joan Harts in lifetime killing the core competition, which premiered March 1st, 2025. Oh my god, I didn't know that. As a singer songwriter, Lily has released 19 original songs. Her upcoming ep, catch Me If You Can, is set to drop in spring 2025. So at the age of 16, she has become a vocal advocate for awareness, early diagnose and better treatment to options for young people facing the condition. Well, we are happy to have them here come over. Thank you, Dr. Thank you. So how are you today?
We're good. Thank you so much for having us.
Yes,
Thank you. We're
So grateful. I
So I think that the last speaker, please forgive me, I do not remember your name, but she said something that really hit home to me. She said that her mom and grandmother and the women in her family experienced endometriosis. I think a major gift that my daughters had or have is that I don't have endometriosis. So almost immediately, immediately I knew something was wrong. The incredible amount of bleeding and the blood clots almost the size of cuties, the intense pain where she was vomiting. And I just knew there was, I went straight, I took her straight to the gynecologist who brushed it off and gave us a prescription to try to lessen the bleeding, the amount of bleeding, but it was continuous. I think some of the symptoms in hindsight that I wish I had known were endometriosis because I knew the word, I knew what it was sort of, but it wasn't something that was talked about.
I had a few friends as a young married who had endometriosis and had fertility problems, but I only knew the word. I did not know really what it meant. And both my girls had different symptoms. So it wasn't until Lily or her surgery post-op that I recognized that, oh, Hannah has it too. Okay. But with Lily it was migraines she lost. The way it progressed is we went to the pediatrician for her yearly exam. She had lost 10 pounds and grown like two or three inches. And the pediatrician took me out of the room and spoke to Lily independently and thought that she had an eating disorder. And then she came and spoke to me and asked all those probing questions about an eating disorder. And I said, well, she's very nauseous when she's in a lot of pain. Had me take her to the therapist.
Well, she already has a therapist. So the therapist said, no, she does not have an eating disorder. She has a pain disorder. What is causing the pain because she's throwing up or she's vomiting and nauseous because she's in so much pain. We went to the allergist, no allergies, she's fine. Have you talked to the gynecologist? Yes, we talked to the gynecologist. Well, the gynecologist said, well, I brought up endometriosis and it was bendi, I will not forget it. Two years ago, almost this week I think Bendi posted and it was early in the morning and I saw the post and I went through all of her symptoms and I started crying and I said, Lily, I think this is what you have. I don't think I know this is what you have. This is every single symptom that you've had and we need to figure this out more.
And I think I called 14 doctors to try to get on waiting lists and one was 11 months. And over the course of a week I read two books about endometriosis. But I missed, even though I read so much, I missed the signs with Hannah because we were told that it was IBS. And then I was talking to Dr. Kin and he asked, well, when did that start? That first occur? And I traced it back to, oh, that was right after she started her period. Okay, well this makes sense. So I think the thing that I would wish is I had seen the symptoms sooner.
It's time for you Lily. How do you reflect back right now for all the things that now looking back, tell us your journey. So a lot of mothers and kids, young girls hear about you. Go ahead.
My mom said a lot of it so beautifully, but for me, I remember I a young teenager or I was 13 when I started my period. It's scary to talk about with your friends or your family. It has this stigma around it. No, you don't talk about your period. That's something you keep to yourself. So even though I was experiencing so much pain and I was bleeding a lot more than I should have been, I didn't know because I didn't talk to anyone about it or bring it up until I started to really be in an amount of pain that I couldn't handle. And I brought it to my mom and we started to kind of track it and recognize what I was going through. But because I had been dismissed by so many doctors, I kind of started to brush it off again and I was like, I guess this is just something I'm going to have to deal with.
And I kept having these really, really painful periods. I was nauseous all the time to the point where I would get hungry and I would get food and I would start eating and then I would just get nauseous and I couldn't stomach food because I was in so much pain, which led to my doctor believing that I had an eating disorder. And that was just the start of a long list of things that doctors thought I had that I ended up not having, which was really hard because I felt like I started to feel like maybe I was crazy and that this was just normal and that maybe I just had a really low pain tolerance and maybe it all was in my head. And that was really difficult. I think it also started to cause some anxiety with me.
I didn't know what was going on with me and I couldn't figure it out. And neither could my mom or any of the doctors and it was really hard. It definitely took a toll on my mental health and I'm sure my family's mental health as well because we all had no idea what was happening. It really was such a light bulb and life-changing moment for me seeing Bindi Irwin's post because it lined up so incredibly with what I had been through. And it was the first time that I had really felt seen by someone else and that was life changing. And then when I got to see you as a doctor, you were the first person to tell me that you believed me. No one else had ever said that. And that was a big moment for me. So thank you for that.
So it was, listen, this is a fact. So this new generation, it's been in the older, well in the previous time it was Padma Susan surrounding. So we do relate how powerful somebody else's experiences is the woman's experience that other women, that's a fact, to be honest with you. Many doctors right now, and I'm sure my friends and the audience who are physicians will agree with me. 70% of the doctors may not believe certain things that you went through was necessary and they wouldn't hard time to grasp it because we can come to that. But Hannah, how would you relate all these things with what your mother said, what your sister is saying, Hey, most likely you don't have anything. Maybe you do, but I don't know that. But don't be scared, but just relate how calm and be calm and encourage us in your words though.
We cannot wait years and years until you're 30 and you're still in pain. We have to do this now. And that's really important, especially for me because I don't want to live my whole life in pain. But another thing about it was how long it takes to even get an appointment. My mom had scheduled an appointment and it was a waiting list of almost a year that had gone by and my sister had had her surgery. She was feeling much better. And the office called my mom back and said, well, you still have an appointment in three months. And my mom was like, oh, well her problem's fixed, but I have another daughter,
She's not wrong. I was like, oh, this is in California. Let's just have you seen.
But it was a really funny experience to think about that, oh, my sister's problem has been fixed and it's been so long and this is just a consultation that has taken a year to actually get an appointment for. But it's just so crazy how long it actually takes to get answers. But I'm very lucky to have the mom that I do that advocates so well for me and knows how to be my support system. I really would not know this without my mother.
So one of the questions that was written down was what advice? And Dr. Chu posted something I think last week about women gaslighting themselves. And I think as a mom, I wasn't sure. I was like, are they really in this much pain? But I saw, and I think sometimes you just have to remind yourself, you have to trust your gut instincts because I knew there was something wrong. And even though the doctors were like, no, they're fine. And I think we had four or five doctors that said, no, this is just normal. I just knew. And it's so hard to trust yourself and be their advocate. You have to stand in because mine were young and you need a partner in this because I doubted myself and my knowledge and doubted it's sometimes them too. And you can't do that. And so thank you for posting that. I have sent that to every mom I know that has a daughter with endometriosis or they think they might have them. So anyway,
So what would you, standing here by now, what would you advise to all teenagers around the world who have symptoms of suggestive of what you went through in a calm way, what would you say after where you are today?
I would say believe in yourself and the pain that you're in. And don't let anyone tell you that you're not in pain. I had so many people tell me that I wasn't in the amount of pain that I actually was and they didn't believe me. Even though I knew that something was wrong, I tricked myself into believing that maybe I was just being overdramatic. And so believe in yourself, search for answers. Don't let anyone tell you that it's in your head and also be kind to yourself and give yourself forgiveness. There were so many times that I felt so guilty for saying no to people or for canceling plans because endo and the pain that you're in is so debilitating. There were days I couldn't get out of bed days that I would spend hours in a hot bath just because that was the only way I could find relief and it was hard for me. I felt like I was letting so many people down. And one thing that I wished that I wish looking back is that I would've been a little kinder to myself while going through what I was going through. I just wish that I would've given myself a little bit more grace and been a little bit kinder to myself and recognizing what I was going through.
So one of the other endometriosis specialists that Lily saw before we found Dr. Kin looked at Lily and told her that this was going to have to be something that she would deal with for the rest of her life and suggested that we put her on antidepressants and in perimenopause and a lot of other things and really dismissed her pain. That was another turning point for me. I stood there and I handle a lot of stressful situations.
She doesn't get mad or upset or overwhelmed, but
I was almost shaking. I was so angry. I was like, I don't think you understand who you're talking to. She had a flare up on set, continued filming. She would curl into a ball when they said cut and she was crying, they would fix her makeup and she would say, just tell me when you're ready to roll. And she would, I wasn't always with her on set, but this was just one day in particular that I was able to be there and they would say, rolling. And she would stand up and do an emotional scene and then go right back into curled into a ball. And this doctor is telling me that this is just going to have to be the way it is. I was like, no, this is not okay. And for you not to believe her, we are clearly in the wrong place.
And this is, she is in pain. She is not making this up. She's not. And my daughters did a documentary about how the endometriosis affects teams that Hannah, it's been in film festivals and Hannah uploaded it to YouTube tonight or last night. So it's available now. But Dr. Chu at the very end said, what teenager? She said, I can't think of a teenager in the world that would want to be in doctors and want to be at a doctor's appointment and curled up in a ball in a pain. There's a thousand other things that they would rather be doing. And that is the truth. Like they're not making this up. And so I think that meeting with the doctor was another turning point for me. Like, oh, you've laid down the gauntlet. You just be ready. I'm going to figure this out.
Anna, you have the word now. No, I think you should say your sentiments after all. Your mother said
So I think we are doing this for awareness, so I really appreciate you coming in, sharing your experience. So I want everyone public know that this is a highly treatable situation. It's just there's so much preconditions, taboo stick culture here that comes through thousands of years embedded in biblical stories and everything. So it affects the way we treat and see each other from one sex to another. And doctors have to learn a lot. I'm very serious when I said doctors should know better because we are the people in the like a referee there directing the traffic and patients are so innocent. But if it wasn't for the patient, I wouldn't be here and they wouldn't be here. It was the patient's voice that brought this here. Nobody could have heard this. So revolution will be within. I've been saying that it's your voice that's going to make the difference and I really appreciate your sharing your the disease is highly treatable.
Oh, one thing though, for example, right now we may come up with something from your experience. I think families who have strong history of endometriosis in their parents and there's that they hear the kids hear this experience. I think one of the things that we should consider as soon as symptoms becomes relevant to a degree, there's nothing wrong being on light period suppression and how that helps business to test couple years. There's no rush for surgery. Surgery is not everybody needs, may not need surgery. And unfortunately the disease, when it settles become symptoms become persistent despite the pill suppressed period. If the pain is going on, then that means there's something that may need to be fixed for the future. So let's take it easy. Not everybody needs surgery, timely intervention, maybe not intervention at all. But even giving birth control pills or suppressing periods and ovulation is right, intervention, it's a good management.
Lily's story is so important. You are diagnosed early in life. Most likely your endo will never, I assure your endo will never progress. Bin D's story as she said, I'm not going to repeat her story, but it's a different story. Bindis was diagnosed eight years ahead of you, seven years and she had different thing as you know as there was a cyst. She describes when the cyst comes the disease on other level it's affecting you that thank God she has a kid and everything and I know she's doing very good right now. So I really appreciate this story has to be a historical moment that you shared your not too many teenagers have witnessed there, shared their stories. And for the sake of really opening and giving hope to so many, this is going to be great. Thank you so much for coming here. Thank you.
