International Medical Conference Endometriosis 2025:
Endometriosis 2025: Your Mother Should Know, Your Doctor Should Know Better!
Keynote: Adolescent Endometriosis, a Call to Action on Early Detection - Ceana Nezhat, MD
I have the greatest pleasure to introduce my colleague, surgeon Fran. For many years I have given some description of who he is here, but I know him so I'm not going to stick to my text here. He needs no further instruction. He comes from a family that has changed the way endometriosis is defined. Her brother Cameron, as a revolutionary persona that affected all of our practices thinking and we are very connected. There are three brothers, Dalton brothers, that really write well, work well and affect so many people's practice around the world. They have done so much for it and I'm really privileged to introduce the younger of Nazar brothers. Cena come.
Thank you Tamir. Thank you Harry and Dan. And of course the foundation for me. It's a pleasure to be here. I mean among such a distinguished scientist and the audience. So I feel humbled if I have to talk about something so obvious about endometriosis, but I like to change the thinking of going to a meeting. So we go to a meeting to learn or to socialize, but here I came to this meeting to ask for your help, your help in changing the way we are advocating about managing endometriosis and that's why I put the topic on my talk, a call to action and you heard the beautifully speaking of all the audience and presenters. So a lot of part of it.
I am going to see if I could figure out how this works. It did. So I don't have any financial relationship to my talk about this subject. However, I do like to thank my fellows and the students helping me, encouraging me to actually come up with the idea of publishing on adolescent endometriosis and putting this talk together. I would briefly touch on atrial pathogenesis and then on diagnosis, but I will focus on management and comorbidities associated with endometriosis. This is a book that for the first time is published at risk in adolescent endometriosis from the different point of view. We focused on involving the experts in the field from different area at the same time also involve the patients and their family and we wanted to hear and listen to their stories for the experts in the field. We covered all the area and when we went to the pathogenesis, everybody focuses on relationship of endometriosis and menstruation, but that's not always true.
Almost all women have menstruation but not all of them get in endometriosis. Then they talked about Oma plegia and hormone part. But I'd like to draw your attention to the last part, which was in 1955 was published that endometriosis starts before menstruation. Now we heard about dances, endometriosis from the age eight or after, or we talk about waiting for menstruation to start the period. But in the book that we have, we have a chapter for room signal who did autopsy on the fetuses before they were born and they found in endometrial gland and in the pelvis. So the cells are there and endometriosis is there. It is as the time goes, something in the environment or the hormonal value is going to help it grow and that's what the focus is that we like to catch it early. Now why some women get worse endometriosis than the other.
It's not always hormonal. It could be nutrition, it could be environmental factor. That's why we put a focus on covering 42 chapter 45 chapters on tour section covering the whole area including physical activity, including nutrition, the type of food. And the sad part is that when the patients started having their symptom, we have ignored it at least as of today and I would touch in more detail with it. We know about the statistic that the majority of the women, I mean they could have pain with majority of women with pain having endometriosis or infertility or statistically 10 to 15% of women worldwide they could have endometriosis. While most of the women report their symptoms, it starts with or before menstruation. Majority of them are ignored and 66% of the women based on the statistics from different area, they had been their symptoms before the age of 20.
But when it comes to the diagnosis, you could see a wide range of 19 to 75% and this is a very wide range. Why is that? That's the NERSC part. That's why Tamar and other area have been advocating about centers with endometriosis. They say the eyes do not see what the mind does not know. So to be able to diagnose endometriosis properly, we have to have centers with the expertise teeth on the series that we published about 10 years ago when a group of patients we pathologically per histologically Peru, a hundred percent of them had endometriosis and 12% of them already had a laparoscopy and they were not diagnosed majority of these, they were referred by other doctors, but however, now increasing family members and social media. Recently we have seen a change in the trend of referral and we get more patients referred by their families.
And why is it important? I like to draw your attention to this video. That's the small bowel terminal ileum and stickum suspended to the anterior abdominal wall and you heard about fibrotic tissue versus just active endometriosis. So we have different presentation. This is the appendix consumed by endometriosis and the fibrosis in invade into the C and the right colon. We look higher up endometriosis and these are all in the same patient all the way in the dran. This is the right hemidiaphragm, this is the proximity of the phrenic nerve. And then when we look further we could see the endometriosis in the left hemidiaphragm immediately under the heart and pericardial. Why this video is important because it explains why the patients have variety of symptom and on the chapters on the books that we wrote, some patients have cyclic asthmatic symptom but that was not really asthma.
It is endometriosis affecting the upper part, the D rag and the chest or the hip palpitations or they are diagnosed with irritable bowel syndrome. But this patient was diagnosed with irritable bowel syndrome. She had actually upper and lower endoscopy and both of them were normal. But you see how the intestines have been affected and involved since then. There are more and more publication coming up. This is the most recent publication for group of experts in the field. Minimally invasive surgery. You see them like Ted Lee would be coming here and Mark Lofa, he's the one who changed his specialty for Rome gynecology to pediatric because his focus was pediatric and adolescent gynecology.
And what is touching and clear about this presentation is that when we look in adolescent, we have to be cognizant that the symptomatology is different than the adult. At the same time manifestation of the symptoms are different. Cyclic effect of it is the important factor and that leads us that the treatment is also different. And that was a good part. This is the part that from the patient, the doctors always telling me it was normal. The mother wrote down, it's terrible to see your child is suffering and you cannot do anything. This is one of my patients who said I was evaluated for IBS lactose intolerance, gluc glucose is intolerant, PID. None of them thought of endometriosis, even Crohn's disease but it's not. So why is it Early detection is important because in early nineties Maria Mena, she was a PhD psychologist that actually was involved with endometriosis foundation and she was seeing a lot of patients. So we did a study on the patients from the psychological standpoint looking at the pain and relationship to the surgery and we found out that the number of implants directly correlates with severity of the pain.
These are the cases that I have published on it. The one on the right side of the screen on your left side, this is actually a 34-year-old infertility patient who was incidentally diagnosed with endometriosis at the time of diagnostic laparoscopy. But you could see that the bottom how narrowed down the, you see this is the unitary. It was choked and narrowed down and actually I didn't do reary resection by removing the disease. This patient 14 years later if everything is normal for her, this is unfortunately a patient who lost her kidney because I published this also is Hema ureter endometriosis was inside her ureter causing like endometrioma, which has a Chaco cyst, but it was in her ureter, the one on the top. It was a 23-year-old. She had severe pain when went to the ER in one of the universities in the south. They thought she has constant impaction.
They did a colonoscopy sigmoidoscopy to impact her. Found out the stricter. What did they do? They put a metal stent in her that was terrible. That was a poor management for a condition that could easily have been managed. She ended up requiring segmental resection while her endometriosis could have shaved off if it was diagnosed properly. Having said all of it on the bottom, this is the worst severe case of endometriosis of the diaphragm that I have seen and everywhere around the world I have shown this picture and nobody has seen it this severe. What is unique about her? She had no symptom. This was incidental finding at the time of tubal sterilization, self injector. So looking at all of this, we have to change the way that we are looking at the endometriosis. I like to compare endometriosis to a bird. A bird is a bird, right?
A hawk is a bird, an ostrich is a bird and a chicken is a bird. But can a chicken run like an ostrich or fly like a hawk? No, endometriosis is the same. It could manifest itself different way. And that's my demand or request to all the PhDs and scientists masters. Let's look at the variation of endometriosis. There was a time that we said, okay, endometriosis is just everywhere. But now we have aosis, we have endometrioma, different classification. So let's look at the genetic part of endometriosis also, this is another beautiful drawing of the pinhole. This is published in fertility sterility. They looked at the fetuses and the nerve pathway of the cervix, paracervical and the hypogastric polyus area and they found out that the cells in that area could affect the nerve pathway. So there are scientists around the world that they are changing the way that we are looking at the endometriosis and variation.
You heard a lot about the effect of endometriosis and his toxic effect of the endometrioma on the ovaries. So I wouldn't elaborate on that, but I like to draw your attention. In 1992 when we published the book on endometriosis, Cameron, my brother, he said, endometriosis is a whole body disease. It is not just limited to the reproductive organ. And here you can see it on the diaphragm, you can see it on the liver, you can see the hydro ter and ovary in the vagina, transverse colon and terminal lilium. And that's true, it's a whole body disease. Last year this beautiful paper was published. They looked at the cross disorder analysis of the different pathology associated with endometriosis and pretty much you can see here that the autoimmune effect of endometriosis could affect pitu, reran, adrenal gland, every part. And you can see this is a very detailed, comprehensive article that I recommend for you to is available online to read it.
Another paper that published on the impact of endometriosis and on the quality of life. And you heard about it and there are now more attention on looking at endometriosis and its affiliation for cancer and what is here. Patients with endometriosis require more surgeries and they are at higher risk for ovarian cancer. And we've known for the fact this is a paper my brother Dr. Far published in 1996 at Risk Association of Endometriosis and Ovarian Cancer. And there are similarities that early monarch both ovarian cancer, endometriosis, genetic predisposition, infertility, all of these that you can see. And then from the protective point to allegation or these days now we are talking about opportunistic or preventive ectomy. These are all preventive factors with we did have webinars during covid and this is a website on end of March we had a good one hour comprehensive talk forum.
Patients with endometriosis, the adolescent and their mom that I recommend you can listen. And also we have the physicians forum, different expertise on the paper that we published in 2015. And we talked for most of the patient it takes between 10 to 11 years, one to 11 years, I'm sorry to find to go from the symptom to actual diagnosis. So we've had patients who had seen up to 12 doctors that have been in a different area and some of them they had orthopedic evaluation, urology, apparition, upper GI evaluation. And then we had the 40% of them had ER visit and these are the comorbidities that could be associated and between all of them, as you mentioned in GI symptom, asthmatic symptom issues. But I'd like to elaborate on one thing that we have paid less attention. We've talked about pain, pain, pain, but I like to talk about psychological aspect of the endometriosis.
This is a 14-year-old suicidal was referred to me by her psychiatrist. She's had everything evaluated. This is the right ovary. You could see that endometriosis involving the right uter, sacral ligament ready forin adhesion compared to the left side and the left ovary is completely mobile. It looks normal. However, actually her most of her pain were on the left side. And then we look down here, these are endometrioid IMP implant in the proximity of the nerve pathway. And one thing that you heard on the discussions before an electro to elaborate on it, it's not the volume of the endometriosis, it's a type of endometriosis. Some endometriosis create local astrogen, local toxin effect, proto gland effect. That's why you have patients with this unquote minimal disease having so much severe symptom. In contrast to the next one, this is another patient of mine, a 16-year-old complained of abdominal pain and bolotin, they told her she has constipation.
Pediatrician gave her laxative, her pain got worse. Ended up in the er. She had a CAT scan. You could see on the CAT scan she has bilateral endometrioma and you could see posterior cul-de-sac, the loops of the bowel involved. So this is her actual surgery. I'd like you to please click on the black on the right one. No on the other one pause the other one. Good. This is a 16-year-old with complete posterior cul-de-sac arbitration. Hydro seines actually uterus itself looks like adenomyosis and you could see the sigma it all the way down attached. And then you could see the tube ovaries. Now we go around her bladder. She has endometriosis looking at the upper abdomen. You could go to the next one please. The upper abdomen looks fine, but here you could see as we separated, this is the worst disease you could say see, but her symptoms were polluted and they thought his constipation, the other one, her symptoms were bad enough that she was suicidal because nobody believed her. Now here she had in endometriosis everywhere including rectal sigma, it pulled up to the back of the vagina and the appendix was also involved with the endometriosis. That's what I am asking for all of us to look at endometriosis as an entity and not just a condition.
This is a nice article published by the same group of Marc Lofa and Ted Lee, et cetera. And looking at the surgical consideration and one part I like to elaborate for on their paper, peritoneal stripping, it is not good practice specifically on the patients who have pain. And you go on the first look and you don't see anything just going after microscopy, endometriosis doesn't make sense. It causes massive adhesion. So I encourage you follow it. And I have seen, and you could even go to some of the society's website like a GL or A SRM. They have unquote robotic peritoneal stripping for pelvic pain. Police don't go there.
Now what's the future going to do? We have all these patients. How are we going to approach them? How do we validate them, acknowledge them. The other studies they are looking at menstrual blood. You tailor actually had a good study looking at the endometrium, but the most one, the one that which is now being used in Europe, in Switzerland and Belgium is checking the saliva and it's a good non-invasive test. It has about 95% accuracy. The only problem I have with it is cost of it is about a thousand euro, which is okay, but they did the study between 18-year-old and above. It means if you want to get approval to do it in the younger people they won't cover it because they said it's not a study for the younger people but still is a good study. I talked with Michelle Ole, all of her adolescent were the patients.
She does the saliva test and if they are positive, she takes them for surgery and it's a good way to go. We came with an app, it's using artificial intelligence asking a series of the question. This app is available free online. We ask all of our patients with infertility or pain go in online and answer those questions based on their questions. It gives them a risk factor less than 50%, 75% or more than 90%. The benefit of this study is validating the patient. We tell them, look at this symptom and when they have the symptoms they know that this is going to help them at least be aware of it. Another area that I'd like to elaborate is there are more and more paper coming up in the past five to 10 years talking about psychological approach of patients within puse, which is excellent. We talk about endometriosis and anxiety.
These papers are the last 10 years. There are good number of patient and in the last five years we have more paper coming up talking about endometriosis and depression, endometriosis, I'm eating disorder. This is a known fact and that's what area that nutrition. Now we have centers from nutrition with expertise focusing on endometriosis and actually there is a good center in New York who started from here and now they have area around the country. So to summarize it, let's look at endometriosis differently. Let's look at the detection of it. Sooner we detect it, the better it is. The younger adult, the more we validate their symptom, at least they learn how to deal with it and we have to pay attention. We do have cancer center, we do have diabetes center. We should have in endometriosis with expertise and focus on the area, not just everybody who go and write them off.
If we detect it early, we could prevent from irreversible damage. The one on the top endometriosis on the surface of the UTA one on the left is a patient who lost her kidney to endometriosis. So thank you for the attention. Thank you for the opportunity and again, I appreciate everybody the way that we are doing all this research and this is the app that I mentioned is available online. I talked with one of our colleagues, she said, my wife is a pediatrician, she's not coming to the meeting. I said, I wish your wife would come to the meeting. This meeting is about the pediatricians, the nurses, and on that line I wish you the rest of meeting to go very well and thank you again. Questions?
Please ask question. So you learn the most precious organ that endometriosis affects is the mine first? That is correct.
Thank you so much. My name is ULA K. I'm a pediatric and adolescent gynecologist at Northwell. A big part of my practice is doing diagnostic laparoscopies for endometriosis and excision versus laser depending on what the lesions are. But regarding it being a whole body condition, one of my challenges is finding collaborators like pain management physicians who can help to manage the other aspects of endo. So I'll often get feedback that says their pain isn't reproducible on exam, we can't really help them. Wanted to ask, do you have any guidance on how you sort of talked to other collaborators to address those non GYN kinds of pain?
Yeah, excellent point. As we said, the collaboration is an important factor from the pain management service. There are growing number of the pain services now who are learning and they are more of a nurse practitioners working with the anesthesiologist than actually the anesthesiologist themselves who have the prescribing clinic. Like in my area, there is a group that they have nurse practitioners, they do holistic approach, they have nutritionists, they have physical therapies, they have acupuncturists and they are all go work well together. One thing, Dr. Go mentioned San, she is, Cox inhibitors are very good and they are less used. The suppressive therapy. One thing my brother Dr. Said years ago, he says endometriosis is like ovarian cancer to rule. We need to do surgery to debulk it but we do have to keep it suppressed like chemotherapy we do for cancer. So those people who say, okay, I do your surgery and I cure your endometriosis and you don't need medicine, they are wrong and they are misleading the patient. So for you, oh good, thank you. So for you to have to find people who work with you on the book that I wrote, one of them is a pediatric at her and the other one is a pediatric surgeon. So I had a good group of people and we really worked hard to make that book comprehensive. Ask your pain management people to get a copy of the book is online.
Really there is no cookbook recommendation on treating. You have to individualize it. I showed you on the video this 14-year-old who was suicidal and she had the GI workup, GI workup, and she was on antidepressant and he wasn't working. The psychiatrist is the one who recommended. So the mom cannot come and tell you what to do. You have to base on the symptom of your patient and your evaluation. You can recommend what to do. Now today we have more studies like MRI and some of the radiologists. Thank God they are learning. Not all the radiologists can read MRI about endometriosis or adenomyosis, but they are learning. So you may have imaging studying and I mentioned for you about noninvasive testing, but you have to talk with the family. Some people have cultural issues like their child is virgin and they don't want the child to go under surgical evaluation. So really have to, it's a tough situation. Alright, well thank you again. Enjoy your lunch.
