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
Alright everyone thank you to our panelists and moderators. We really appreciate it. I'm going to welcome back Dr. Seskin to the stage, Dr. Tamara Seskin to moderate our next session, A Disease Without Borders. Why Endometriosis requires a team approach. I'm going to call up our panelists as I introduce them as well. Feel free to head towards the stage McCall Huey is a passionate advocate for those facing endometriosis. Diagnosed with stage four endometriosis in 2019. McCall now serves on the Endo Founds patient advisory committee, empowering women to advocate for early intervention and personalized care. McCall, come on up.
Alright, next I'm going to invite Camille Winter. Camille Winter. Up to the stage, Camille is a lawyer specializing in anti-money laundering and terrorist financing compliance at an international bank. She's a native of Jamaica who immigrated to the US as a child and began experiencing the effects of endo at just 13 years old After suffering for 20 years from endometriosis symptoms. Recent surgical treatment has provided renewed hope and is helping her to reclaim a quality of life previously stolen by this disease. Welcome up to the stage Camille Winter. Last but absolutely not least, Stephanie Christian is a passionate advocate for women's wellness and Ayurvedic counselor, Reiki facilitator, teacher and master, and an advanced essential oil specialist with over 12 years of experience in alternative holistic therapies. Please welcome to the stage Stephanie Christian and then Dr. Seskin, our moderator.
I will stick to my time. Arthur, this is the most critical part of reality. You should know endometriosis surgery is not a joke. Surgery, it's the most serious surgery. It is worse and much difficult than cancer surgery. A lot of people getting away with their own things and nobody, if you go to these international meetings, even you look at their agenda, nobody talks about the issue of unintended consequences of endometriosis surgery and if you even get consent in your doctor's office and things like that. Nobody talks about the real complications. This is really how you can prevent complication. Despite every measure you take with endometriosis, you still have unintended outcome after surgery. I honestly heard, of course I'm not going to point to them, but there are two patients in the crowd who have bags that you won't know who they are and they're carrying it for a while and there are people who will talk about bags here I have a patient I operated 10 days ago.
It was 10 days exactly. Came with a cane who could not walk, had three, four hysterectomies in the most prestigious places in the United States and they couldn't do it. She's here walking right now. There is a reason who does the surgery? Why? And it can't be one person. It's not fair. One person is not enough. Surgeries are long. There's something called surgeon's fatigue. One surgeon cannot see everything. Yes, Elon Musk is crazy, but he did something that a human, he's doing a driver because he's got all the experience communicated. He has loaded into computer. He knows exactly every spot that can cause problems. Humans are very subject to not doing perfect even then. That's why we are here today. I have wonderful panel here. I hope I touched the question issue right? Do I have So I'm glad you are joining us. I know you both, all of you and I want to start with the youngest on the corner that she will tell her story and why other stories are how that relate to your story. Your story relate to it. You're really sisters of the same consequences. Somewhat. You have different outcome than theirs. Yes. I need a microphone. Do we have a microphone? Do you know how to make that work?
Close to you.
Really thrilled to be here. So I hear these amazing stories of women who knew there was something wrong, sought multiple physician's opinions, advocated for themselves until they got a diagnosis. And briefly I couldn't have had a more of a different experience. I remember when I was starting my menstrual cycle, 12, 11, 12, I went to my OB, GYN and she said, know you started your period and how's that going? And I said, I'm in extraordinary amounts of pain. And she said, yeah, more or less every single woman is going to feel the exact amount. So you're all no different. Just find something that works for you. And at 12 years old, I never questioned it again. I just lived with it. I never thought for an inkling of a second that there was something bigger at play until I had an emergency surgery in 2019 to have a sister moved to which I then learned of the word endometriosis.
I hadn't ever heard the word before. I'm googling it with my mom in the hospital bed. And then I later found Dr. Kin a few months later and he did a six hour surgery removed 51 endometrial lesions. I had an appendectomy and a bowel resection and ultimately it just completely changed my quality of life, but certainly the bowel play I had had a lot of IBS, which he calls IBS, which it is trying to figure out what that was. Now I look back and feel silly having not connected the dots sooner, but certainly for me bowels and diet and all of that really was affected and what led to my stage four diagnosis. So for Winnie talking about diet and all the things that really rings true and clear to me because those are things that I also struggled with and had to sort of find balance of my own diet and try and error and all of those pieces.
Thank you. Thank you. I think the reason why she's on stage is I ask them personally because this is a young age diagnosed or very advanced endometriosis, ladies, endometriosis is progressive disease. It does progress. Not in everybody. In some people. That's why we are here for, that's where molecular medicine genomics does make difference. There's a difference of their endometriosis than you heard about silent endometriosis or fertility seeking patients who have nothing to be found on sonogram. There are looked at normal patients. This is different. That's why we are doing this session. Your mother should know. Your doctor should know better. I should know better because of me. You should know better. So that's an early diagnosis. I know what I know and I can share what story touched about me. She's a very smart girl from Texas in law business here. I've never heard anybody what she does in law business.
She can say that if she wants to, but I was very impressed. What I was impressed more is more to her story. It is not her mother who is here obviously supported her, but when she said my father never believed me when he learned that he started to cry. I like to hear those fathers who cry because they have different opinion of girls and why is different and I'm one of them too. When I'm moving to my house, maybe I'm a different person. I have to admit for all things. I apologize. My wife is not there, but that's okay. So moving on to next patients. It's important to talk about complications. I have patients who went back to surgery because they had postoperative bleeding despite we do everything, they accumulated blood, we brush them to surgery again or they came with fistula, we repaired fistulas. There's no fistula I didn't have and I repaired them. So people come with bowel obstruction and I am going to present another lawyer. She's a scary one, a anti-money laundering lawyer. Here we go. You're going to hear her story. And I operate on lawyers. I'm not afraid of them.
Your money's safe. I'm only care about banks so it's okay. So when I saw Dr. Seskin recently, I had had two bowel obstructions. So my endo journey started very young as well, 13 years old, A lot of painful periods, but it presented normally cramping back pain. But over the years it got worse and it was mostly rectal pain, rectal bleeding and I would go from GYN to GYN and they would tell me, oh yeah, you have endo and all these things but we can't do anything about it. Your best bet is to just stay on birth control and do pain management. So I did pelvic floor therapy, I did everything I could and then it just wouldn't get better. And then it got to the point where my colon was 90% blocked. I couldn't eat. It was painful to eat, painful to use the bathroom.
It just impacted my entire quality of life and I was having symptoms outside of my period. A lot of leg pain. I couldn't sit for long periods of time. At that point I didn't know that my endometriosis had spread throughout my rectum and throughout my large intestine. So after two bowel obstructions and dealing with insurance companies that would approve one surgeon and deny another surgeon because I needed not only kin but a team of surgeons to help me. I finally was able to get the surgery that I needed and it has made I feel like a completely different person. I feel mentally stable and for the first time in over 20 years. And so I say that to say that I think the biggest takeaway for me was finding doctors that knew that endo impacted my whole body and not just my reproductive organs.
I think, I don't know if you intentionally omitted, but there is a reason also why you had multiple professional specialists in your care. You came back to hospital for something. Yes. Do you want to talk about that?
About the ureters?
Right? Yes.
And she came, may I talk? Yeah,
Go ahead.
And suddenly she wanted surgery. Suddenly I got a call from North Westchester Hospital Kin, your patient is here, what's going on? She's obstructed. It's either, it's very inconvenient time to get my staff together and the guy over there, very respected guy who was here before, he said, I don't want to touch her, I just don't want to touch her. Okay, fine. So what do you do? They put, can I? Yes,
They put stent, rectal sigmoid stent like you do to the heart so the blood can flow. So lots of cardiothoracic surgeon lost business because of that. Because we do stents now, they don't need major surgery so they put rectal stent. She came back to our hospital with a rectal stent so she doesn't get obstructed unfortunately that I have those pictures. I do present your case without mentioning to others. I have other patients like that too, but it's very, she came with a stent and Sergio took three 11 hours and seven days after or so she came back with the fistula. The from ureter there was, so we put stent against and then it was removed. You're doing fabulous. Fine. So it's another complication. These are the 10% of the advanced cases on the average. I presented yesterday one in 10 things though. Go south. You have to know that. But it has to be within the realm of the team that can manage that. Here I have another story. Stephanie is a nurse, has been long patients. I forgot how many patients, how many surgeries I did for you, but I have done five surgeries but I know her for years. For years.
She will tell her story and it's a remarkable story and she really suffered so much. I felt so much for her. But it is one of things that you should also know. Reality cannot be hidden. Go ahead.
Well, fast forward we found Dr. Kin who did my first surgery and I think I had 19 cassettes that were positive with endometriosis then. And I thought, okay, great. Again, in my head thought I'm good. Well, two years after that and two years after that, the surgeries piled on. But I had different complications because once that endometriosis had been moved around, initially it was starting to be around the bowels. It was attaching my rectum to my uterus quite often. I also had ureter surgeries where I had a stent and a catheter and then fast forward what I thought would've been the final surgery and I thought that this time we were going to be able to plan it.
I wasn't able to plan it and I had to be rushed in during that week for a hysterectomy and I was okay. I had at that point realized that this was going to be a part of my journey with endometriosis, that this hysterectomy was going to happen. I knew that that's not the end all and answer all. However, we had a beautiful surgery and a few days later I had to call Dr. Suskin and so I ended up going back to the hospital near me. Dr. Suskin was on travel at that time for his birthday actually. And I had to trust a team that was at the ER at the hospital near me and I ended up in the hospital for 45 days. More than half of that time they didn't know if I had time every day running those labs and then created a team behind the scenes with Dr. Kin and other doctors that were on board that were able to read all my reports daily and then let me know how I was going to do the next time. So here I am.
So the bowel related surgeries and their complications are potentially could be fatal even if you're not in the right hands, not managed well. So reversal of the bowel resection or colostomy is very, very important. Not everybody can do it. It has to be done by really, really caring and gifted individuals that work together. Alright? We have teams of bowel surgeon, vascular surgeon and urologist also and more important, even liver surgeon. We work together. But I being the most experienced eyes and eye with this disease, they don't have that experience. They do not recognize the disease really, they cannot and they miss things. And because we are gynecologists in general, there's an attitude. You are a gynecologist. What do you know type of in my hospital that doesn't go that way. Dr. ATAs would testify to that. I'm the boss in the surgery in my patient.
If I'm bringing the patient to the room, I make that decision because I have more experience than them that designates a team and I need other doctors to be like that because they do liver transplant maybe or they do this but they don't know. Endometriosis thoracic surgeon, he's excellent, but he misses that little hole on that diaphragm and the patient goes back to hospital 15 times. There may be thoracic cases here. How many of you had endosurgery had very difficult recovery or complications? Oh my god, look at this. There's a reason you're here. I counsel at least 15, 20 arms here. So this is the part nobody talks and we have to talk about it. There's nothing wrong. This is going to make doctors to train better and be more tedious and teamwork oriented than every little corner hospital. Anybody who has a scope goes in and do things and build the insurance company and okay, I don't want to see anywhere.
I think the most important critical part of endometriosis care or surgery is not the surgery really it's after surgery, the care and what you instruct people. I will typically tell patients who are coming from Toronto or anywhere outside of New York City, even stay around 10 days, seven days please, seven days a week. I want to know when you move your bowels, make sure you're not having any temperature. Bye-bye. Have a nice travel back home. That's the way it is. Otherwise, if they end up in another hospital, even in New York City, you don't know who's on call in that emergency room that night. It's usually traveling doctors or moonlighting doctors from somewhere else. He will do the job. You'll never see him again in your life and hospital will be fine everybody, but you will be. Unfortunately with Stephanie, that has been the case. But I visited her in the hospital multiple times and she is here with us today and I'm so proud that she's doing very well. Thank you.
I don't want to go over time. I like to take questions because this is a very important part and we have time, right? Another five minutes, 10 minutes. How are we doing with time? Any questions in the audience please? There you go. Can we give the microphone please?
Hello? My question is for a few people I believe have the same one because we were discussing it is affordability and accessibility. That's one of the hardest things I'm coming across. I have comorbidities. I have 31 years with Crohn's disease and I just got diagnosed with endometriosis. I'm disabled on Medicare and Medicaid. Finding some of the best doctors like you that I would love to have on my team. Unfortunately don't take my insurance. How do I go about doing that? I know some doctors have some great programs, some sliding scales and other things like that, but it's hard. Being sick and poor is the full-time job doing this and I'm sorry, getting emotional. It's really, really hard. I'm so thankful for this conference.
The question is very clear. This is the eternal question. I appreciate you bringing it. So that's why this foundation exists number one. Alright, I can't obviously time-wise we can't operate in every patient. The problem is we have a conduit through the foundation. If you write to foundation and I will find the right people that we can operate you in our hospital. I'm saying this obviously we will pick cases. I like to offer patients who have obstructive bowel disease, who has sciatic endo chest cases. I will do everything. Their foundation will ease the conduit for them to get treated. And you have my word word. There are people who I thank you and serve you for what you do. I want you to know that I know not everybody can afford certain things, but not every doctor can afford the malpractice issues I pay in the heart of New York City also, let me tell you that.
Thank you.
I appreciate the question. I was going to answer you before actually I heard the question, similar question before. Blessed. This pops out all the time and we have done so many cases throughout and there are also wealthy people who also subsidize this. But we don't want want to make it like a open public announcement that we are channel there's openings in the channels. Hopefully it's going to get better, but we have to push for it. You're right. I mean especially cases who are truly debilitated cannot find the right doctor to have one. Alright, go ahead. Thank
Yes ma'am. Thank you.
Let me tell you the real problem. I know the people who were in that committee of ablation versus excision business and who really coded endometriosis. The most common and the most misdiagnosed, the most mistreated, the most mismanaged type of endometriosis is the peritoneal endometriosis. And these people, they are my friends, I consider them, but professionally we are at the other end of the stick. They are in academic medicine. I'm in private medicine. I spend one hour with my patient. They spend 15 minutes. They don't see much peritoneal endometriosis. See they named peritoneal and the real peritoneal endometriosis, which is most common and many suffer as superficial endometriosis. When it is superficial, I'm telling you, your disease is superficial. So that means it's not as important as deep. It's not important at all. It may not be even there. They put that in the coding. I can't believe what they did. They cut the branch. The most important branch we're standing on. So we need to reverse that. The coating is wrong and the coating does not refer the real disease. I mean there's no way you can tell if the superficial does not designate the dissemination of there are maybe 50 lesions and there may be also deep two. But who's there to say it's deep or whatever
To justify. So we need to correct that. We started to in that thing. We have a lot of work to do and insurance companies loves it
Because
They want it to be called superficial though they don't pay
So no doctor does the
Procedure
And
They don't get better results. In more surgeries though, like a lot of women who have ablations first and then can find care at,
Do you understand the difference? Everybody understand difference between ablation and excision? I'll make it for the record. In breast surgery, it is always that small one, very little tiny lesion that could be cancer. If you don't do the right approach to it, the patient may have sustained breast cancer. The word is excision surgery. It's been traditional 450 years, 60 years like that. I actually learned excision through that because I had the opportunity to work in that kind of business. But it should be excision when you remove the whole disease with border free to the point that you don't, the whole rationale, you don't leave disease behind and you can easily not see all the lesions if you're not trained. Most lesions are not pigmented. In other words, they're not black, they're white and off white and under the bright, under the blinding effect of the brightness of the light we use, we miss most of those lesions.
My pathologist say, how did you find there was only one gland there? How did you find it? I winked at her. I didn't see it. I only removed the white area. You found that one single gland there. But for that, for patients though, it's so important. The word is validation. I mean, how many lesions you removed by excision is so powerful. It's a big set towards vindication. I was right this a doctor. I loved my doctor. But how did he miss this? He did miss it. Because there is a different way of seeing it. And unfortunately when doctors know everything, they don't have to learn anymore. That's a big problem, right? I think I really thank you. I stole the microphone from you, but do you want to add something to the rest of just say something just close and forth. The rest of the people who may listen to this tape later in life,
You want to go first? I would say what made a difference from my journey was learning the disease from myself and days like this and foundations like this help facilitate that because by knowing the disease and how it works and how it impacts your body, you get to weed out those doctors that really don't want to learn and don't want to know more. And then it prevents you from putting up with years and years of subpar care. And if there was one thing I could have changed about my endo journey was that I put up with a lot of doctors that didn't care about me, that didn't listen to me. And it wasn't until I found my current doctors that I felt heard, they understood everything that no matter how unique my symptoms, they could explain it. And they built a team to address the way endo was impacting my whole body. So the more we learn about the disease, I hope more doctors are interested and want to learn and don't feel like they know everything and that they don't just give us the bare minimum when we go and say, I have period pain. I have bad periods. So I just really hope that foundations like this and days like this can just change the way everyone views this illness.
Want to say something? I'm just going to say that if you end up, if ever having a complicated surgery or end up in the emergency room, take it step by step. Take it breath by breath. Know that you're here on this planet for a reason. Whatever your purpose is, you're here. And if it is for patient advocacy, if it is for your own advocacy, learn to listen. Listen to the relationships around you. Communication goes both ways, between the doctors, between the patients, and between your team. So listen and communicate and communicate well.
Thank you.
