Our mission is to increase endometriosis awareness, fund landmark research, provide advocacy and support for patients, and educate the public and medical community.
Founders: Padma Lakshmi, Tamer Seckin, MD
×
Donate Now

Provider Panel - Brain on Fire: When Endo Fans the Flames

Provider Panel - Brain on Fire: When Endo Fans the Flames

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

All right everybody, so I'm going to introduce our next moderator. She'll be moderating the following session, brain on Fire when Endo fans the flames surrounding mental health. Dr. Amanda Chu is a board certified gynecologic surgeon dedicated to advancing complex endometriosis care. She brings her expertise and passion for treating multi-organ endometriosis and its impact on pain, fertility, and quality of life to everything she does. She's an incredible advocate and she volunteers her time with the Endometriosis Foundation of America, and we're so appreciative. Please welcome Dr. Amanda Chu.

Thank you. All right, thank you, Carolyn. So I think this is going to be a very timely panel after the panel we just had. So I want to introduce our provider panel. So first I'm going to introduce Dr. Arnold Wilson. He is a training and supervising analyst at the Institute for Psychoanalytic Training and Research in New York City. He was a professor at the New School for Social Research and the Seton and Seton Hall University. He has served on numerous editorial boards, including the Journal of American Psychoanalytic Association and the International Journal of Psychoanalysis. He received his postdoctoral training in clinical psychology at the Yale Psychiatric Institute and Analytical Training at the Columbia Center. He is the author of hundreds of articles and a recipient of several professional awards. His latest book, paradigms and Processes, selected Papers of Arnold Wilson, PhD was published in 2022. Okay. Secondly, we have Dr. Jennifer ocu. She is an expert in reproductive psychiatry and women's mental health. She completed her medical training at Harvard Medical School in Brigham and Women's Hospital. She's also a physician writer with a master of science from Columbia University in narrative medicine, and her work has appeared in publications from CNN to the Journal of the American Medical Association. So please welcome these panelists.

Well, thank you so much for inviting me to be here, and I really feel honored to address this audience. Chronic pain changes you. It is a threat, right? It's a threat to the body. We've talked a lot today about trauma and inflammation. Chronic pain changes your body changes your mind. Fundamentally, it changes the way that you experience pain. I was humble today in the audience when we heard that story about the contractions, and I have two kids, I did not want an unmedicated birth. My first one was almost unmedicated, so I know what contractions are, and I was like, wow, I've never heard that metaphor before of having contraction level pain on a monthly basis. So I learned something today. I was feral in that delivery room, and I can't believe that so many of you go through that every single month. Chronic pain is a threat.

I was so scared. I was fundamentally scared. Chronic pain can impact your prefrontal cortex, right? That's a system of the brain that deals with emotional regulation, the amygdala, that's part of the brain, that's part of our fear response system. It's always scanning the environment for things that can be threatening to you to keep you safe. Those parts of the brain become super, super sensitized and changed. This is why some folks who struggle with chronic pain have higher risks of anxiety, worry that that pain is going to come back. You better believe for that. My second pregnancy, I was in my obs office being like, you're going to treat my pain, because that anticipation of those contractions, again was real. And so those things impact you. Inflammation, endo as an inflammatory condition, the inflammatory molecules, these cytokines, they impact the metabolism and the synthesis of neurotransmitters. These are things like serotonin and your feel good chemicals, serotonin and dopamine. And so when you just chronically and persistently have these attacks on your body, your mind is, it's changed. And you can be more at risk for things like anxiety and depression and PTSD. There are studies that are done that show that folks who have endometriosis have higher risk of being diagnosed with things like anxiety and depression and trauma, and not to mention other psychiatric conditions that may also go unrecognized.

Yeah, absolutely. I mean, I feel like, I don't want to use this term lightly, but a lot of my patients experience something like PTS, right? So that trauma, I've had people come back after surgery. It's not fear of pain, now it's fear of pain coming back. So it just, one fear is replaced by another fear, and so that sort of constantly feeds itself. Dr. Wilson,

Thank you Dr. Chu, and I want to thank the audience as well. You, you're the future and we love our young people and we want to hand the baton off to you in years to come to carry forward the work that we've begun. I would like to, if I could ask a question too. I'm trying to explore a hypothesis that I have, and it's informal. It is not one that I've ever seen written about in the literature. The hypothesis is that women with endometriosis have what I'm calling hyper drug responsivity. And another way of saying that is that they respond very powerfully to most medications, psychiatric and non-psychiatric. And that oftentimes a woman with endometriosis who is treated for something using one or the other medications will be forced to sacrifice the benefits of that treatment because typically they're overmedicated. So the question I have, please raise your hand if you feel that you are hyperresponsive to most medications.

Okay, well, moderate support, let me limit myself in discussing this to some of the psychotropics, some of the antidepressants or the anxiolytics, these were medications that were normed on samples of non endometriosis individuals. So antidepressants were normed on individuals with major depressive disorders, Alytics normed on people who had usually GED, generalized anxiety disorder. And then after that, they were released. And then as so often happens, the medications were over-prescribed. They were over generalized for too many people. I don't think there's ever been any medication that has been normed for women with endometriosis, although the individual who began speaking tonight who said that she's working on one that aroused my interest, I'd like to know more about that. It's the first I've heard of it. Typically, if you are going for a medication and the doctor wants to prescribe say 10 milligrams of it, you say thank you, but I'll start with two.

And then if the doctor wants to go up, titrate up by 10, you say, thank you, I'll titrate up by three. So when they want you on 25, you should be at five, and it should take you a long time to get to whatever upper limit you feel that you should be. And don't be surprised if you are experiencing all the benefit you need at subclinical levels. I want to really emphasize that if you are getting what you need at subclinical levels, you say, stop. Stop right here. Don't go any further. Okay, let me stop at that.

Well, now I'm interested. So are there specific classes of medications you might recommend depending on what you're treating? So if you're thinking, I'll let you elaborate on that, but if you have someone with PTSD and endometriosis or depression and endometriosis, is there something we all have our algorithm of how we triage a patient? So is, like I said, a general recommendation you have.

Would you like to take that question?

Yeah, yeah, sure. So as a psychiatrist, I prescribe these medications. The classes of medications we typically use to treat things like depression or anxiety or PTSD or things like SSRIs. These are your Lexapro and your Prozac or your Celexa or SNRIs or medications like Cymbalta or Effexor. I dunno if you guys have heard of these medications before, but there's a host of other medications that we also use to address things like PTSD, maybe like a mood stabilizer like Lamictal or a benzodiazepine to address things like panic or anxiety. So there's a variety of different medications. I like what you're saying about dosing, right? Because as a psychiatrist, when a patient comes to me, I treat the patient that is in front of me. I listen to what they're saying. I ask you, are you sensitive to medication in general, whether they have endo or not in your life, have you found that you're really sensitive to medications?

Are you who typically has a lot of side effects? And if they do, we might start at a lower dose. I say, okay, something like, I dunno, like Lexapro or whatever. If I might start the average person at five milligrams, I'd be like, okay, yeah, yeah, let's start at 2.5. If you feel like you're really anxious about starting this medication or you feel like you have a lot of side effects. And then when we come back, we're always assessing, how did this work for you? Are you having side effects? People should know. Side effects are not something to always be afraid of. Sometimes it's just part and parcel of taking the medication because sometimes side effects go away with time and sometimes they don't. And we can discuss that and we can figure out together. And I always put side effects in two buckets, intolerable side effects and annoying side effects.

If you have an annoying side effect, I'm like, okay, so we know how to manage this. We know that this might wear off with time. Let's put up with this a little longer until we get to the therapeutic benefit. Then we can together weigh what is the therapeutic benefit for you and is it worth the trade off of this side effect? If it's not, we'll cut it right? We'll find something else. If it's an intolerable side effect, we just go back to the drawing board. I never ask anybody to put up with a side effect that they find is intolerable to them. So we always work together to find the lowest effective dose for you. Just because the textbook says this is the average dose does not mean that's what you'll end up on. You want to advocate for the lowest effective dose for you. That's my approach as a psychiatrist when I work with people with medication.

I would just like to add a couple of practical points. Yesterday I spoke about panic disorder today. Now I'm going to say a couple more things about panic disorder. I didn't say yesterday. On the practical side, oftentimes benzodiazepines are stigmatized and endometriosis patients are kept away from them because they're told that they're addictive. Benzodiazepines are kind of tranquilizing, and when overdone, they can make you feel kind of like a zombie. But when done properly, they're very effective treatments for panic. What I ask many women with endometriosis to do is to go down to the pharmacy, pick up one of those contact lens cases that cost about $2, and get a script for one of the benzos and take the benzo, cut it into very small pieces because you have to remember how powerful it is for you, and then put it in your purse and carry it around with you wherever you go.

And if you feel a panic attack coming on, if there's no reason to stay home, there's no reason to leave any social event, excuse yourself, go off to the side, take that little piece of a benzo and wait 20 minutes. And oftentimes, and usually that will head off the panic attack and you can go right back to what you were doing. And I'm not going to call a straw poll the way I did before, but I can tell you that the vast majority of young women with endometriosis are fighting panic. And that many, in many occasions, the panic attacks really disable them and it's not necessary.

So I think maybe to go off of that, which that would be, I don't want to say a coping mechanism, but a strategy. If you're out and you're in an event where you don't want to leave, are there other strategies that you might recommend that an individual could potentially use in the moment?

So oftentimes when folks struggle with panic, there's oftentimes underlying anxiety there in general. And so panic oftentimes represents the most severe, the most acute, the breakthrough kind of moments. And so as a psychiatrist, if you're having one or two panic attacks a year, I'm like, okay, yeah, here's a benzo, go ahead. But if you are having multiple panic attacks frequently where, because we oftentimes think of a benzodiazepine as an needed medication, but if you are using your as needed medication very regularly in a scheduled way, it tells me, okay, there's something underlying here. We need to bring down that threshold of anxiety. So then I would start with managing that generalized background anxiety, maybe with a daily medication like an SSRI. And then if you have breakthrough symptoms, then yeah, that's where the benzo comes in as a useful tool. Sometimes when I prescribe the benzodiazepine people, they don't even end up taking it.

It's just the security of having it. It's just the security of having it that empowers them to feel like, okay, I'm not going to be trapped by this panic if I go out. The other thing I would say about benzos and endometriosis or benzos and trauma. So a lot of times I feel I employ the very judicious use of benzodiazepines medications like Ativan or Klonopin or Valium, when folks are struggling with PTSD, which as we've discussed oftentimes can come with the experience of having endometriosis. And that is because benzos kind of puts you into this slightly dissociative state, kind of connects you from the current moment. And oftentimes in the treatment of trauma, we don't want people to be disconnected from their experience that can make the trauma persist and that can make it worse. And so we always have to differentiate, is this a trauma reaction that you're having or is it panic or is it anxiety?

And so it's very important that we're addressing the right thing. We don't want to make things worse. I think going to therapy regularly and consistently can very much help build up coping skills and resilience. I think oftentimes as a psychiatrist, I sit down with my patients and I'm like, okay, open up. Share your screen with me. I practice like, share your screen. Lemme look at your Google calendar. And we look, okay, where are you ovulating? Where's your period coming? Why do you have all this stuff scheduled the week your period is coming? And I'm like, let's talk girl. When we're thinking about self-compassion, part of self-compassion is respecting yourself, respecting your limitations, respecting what you're capable of, respecting your bandwidth. And so I heard a lot of disappointment. I think maybe was it your sister or your mom said that, oh, I let a lot of people down today.

I couldn't show up in my life the way that I wanted to. And oftentimes I'm like, yeah, that sucks. I know that feeling, right? I'm a perfectionist myself. When I let people down, it really hurts me. And so looking at when your symptoms are going to be their worst, the compassionate thing to do is not to over schedule yourself. So as a psychiatrist, I look at people's calendars and I'm just like, okay, maybe this is not the time to go on this weekend trip with your boyfriend, because I've heard people come back and they're like, yeah, we had all this conflict, blah, blah, blah. I'm like, okay, yeah, yeah. So next time we know let's not schedule it in this way. And so it's really taking this holistic look. It's not just about the medication, it's an integrative strategy. It's looking at your diet. What are you eating?

What are you putting into your body? It's looking at the environments with my patients. I tell them, go where your nervous system feels regulated. As a black woman, I cannot stress this enough. I have extricated myself from places that made me feel fundamentally unsafe. We talk about that chronic and persistent threat that people experience. I bring that wisdom into my talks with all of my patients. Find places, communities where you feel safe, where your nervous system feels regulated. I look at people's diets. I look at your sleep if you're not sleeping. Sleep is so fundamental to every single element of your mental health. That is one of the things I work on with people a lot. So making sure that you're more likely to have a panic attack if you're going out to an event, if you've had poor sleep. I don't play games with sleep. People know Dr. O doesn't play games with sleep. She's like, she's always asking me about my sleep. But there's just multiple holistic strategies you can employ

Really quickly, and then I'm going to let you respond. It's funny that you say that because I think that just like you're saying, give yourself that space and time. It's because people have maybe two weeks where they feel good, so then they cram everything that they possibly want to do in those two weeks. So it's so challenging. It is always a balance. And what you said about putting yourself in a space where you feel comfortable, it's a few years ago I read this book called Marie Kondo. I'm sure people have heard of it. And so you go around and you sort of touch things in your apartment and you say, okay, how does this make you feel? So not to say go around, touch things, but really examine how they make you feel. Because even the things that you own in your own home, they make you feel a certain way. And if those feelings are negative to take them out. And I thought that was really, really nice. So sorry, go ahead, Dr. Wilson.

Thank you, Dr. Chu. I do want to speak for a moment to issues that were raised about trauma. And in reply to that issue, I want to go back to the very poignant O'Reilly family description of how difficult their life was until they met Dr. Seskin. And then there was a switch that was flipped. What had happened was that, I'm going to use a technical term now because I am a psychoanalyst. The transference to their doctors was now being managed properly. So I'm going to say that again in different ways. Transference is something that everybody has. It's always on. It's never off. We're always having relationships with people that are based on internal conflicts that are externalized. And the most difficult transferences to manage are transferences of authority. The many, many encounters between women with endometriosis and their doctors are aberrations of transferences of authority.

And one of the things I've noticed, I've consulted on hundreds of cases of women with endometriosis. What I've noticed, and they've me this is that all things being equal, one of the best predictors of shorter post-op recovery of feeling less pain is when you transference to your physician or your surgeon is being properly managed, that in some way you're able to put behind you the rage at being misdiagnosed when you're able to put behind you the feeling of isolation about nobody being there who could understand what you're going through, but the betrayal of the authority people in your life. And then what happens is that these failures, they set up shop in your head and they exist as internal figures, and you rage at them all the time. That has to be managed. And if that can be properly managed, then I think that your prognosis actually gets much better.

I, yeah, I think that the work of this organization is so, so important because when we're thinking about doctor and patient relationships and the people's symptoms being dismissed or just kind of swept under the rug or their symptoms, the disease taking what, seven to 10 years to diagnose, and I'm sure it's longer for people of color. I think about my own experience as a physician. I went to the University of Virginia, it's like, I think it's a good med school, and I heard the word endometriosis I think one time. And it was from a friend that I met in the town. She was telling me, she's like, oh, I had to go to my doctor. I am going to have surgery for my endo. And I was like, what's endo? And she told me about it and I was like, oh, that's okay. And I never really heard about endometriosis ever again during my tenure as a medical student during residency, obviously I'm a psychiatrist.

I went to psychiatry residency. So not the center, not the focus of what I was doing. But again, I went to Harvard Hospital for my training, didn't really hear about endometriosis. It wasn't until I pursued further training in reproductive psychiatry where all of my patients became women. And I started noticing having more patients, you take their past medical history, okay, what else? What other conditions do you have? And they were telling me about their endo. And I was like, okay, what is this endo? I need to learn more about this because I'm noticing people are having this. And then I came to a patient day, it was a virtual one back, I think it was maybe during the pandemic, it was virtual. And that's when I started to really learn and coalesce this understanding about what this condition is and that it's a whole body illness.

And so I feel like I'm a well-meaning physician. I want to do my best for my patients, but I just didn't. In the same way that you guys don't have access to information, physicians also don't always have access to the information. So some of the sweeping under the rug is ignorance. We just don't know. And that's why when we think about personal responsibility, it's not all on, you don't end a warrior shouldn't have to fight tooth and nail to get the answers that they need. But doctors also shouldn't be ignorant. We should know the systems at place should tell us. And I think it speaks to the reproductive nature of this condition, right? Because it just impacts people with uterus. It's not front and center. When I started becoming passionate about learning about endo, I tried to give a presentation at one of the big psychiatric organizations and they're like, oh, but that's not a big enough topic. That's what I was told.

I wanted to give a presentation. I was like, let me talk about the intersection of psychiatry and endometriosis. And I was told, that's not a big enough topic because people just don't know. And so your doctors are also maybe from a place of ignorance and the responsibility of the authority, the burden should be more on the medical system. But individually, we just don't know. And so we really need to get the language out there, and that's why organizations like this are so important and so powerful.

Oh, okay. Alright. So we just have a few minutes left. So if we have some questions from the audience, we'd love to take them. There's someone there in the red, if Carolyn's going to give you, okay.

With women who have endometriosis? No, I'm a psychoanalyst by training. But with women who have endometriosis, if you ask them whether or not I was an analyst, they would all say no.

I can also speak a little bit to your point. I think it's important. Again, humility is key here. We always have to take a look at our history. Psychiatry's hands are not clean. We used to think that runaway slaves had a mental illness. Hysteria, like you're talking about, all of these things have cultural origins. As humans, we are not devoid of culture and what influences us. And so I think always taking a look at the cultural background, the historical background and the context will be important. And I think that's why it's so important for us to have people of all backgrounds be practicing in this profession and challenge us and ask us, force us to ask questions that challenge our biases in the way that we practice and apply the tools that we have.

One more question.

Hi, thanks. I just had a quick question about how you might treat adolescents with endometriosis and their mental health and psychological health differently than older women or older people who might have endo. Thank you. Either of you.

Working with adolescents is always a challenge with or without endometriosis. And your question is a very important one. And I would welcome a two week seminar that would answer it fully, the adolescent. So I'm going to do a 32nd version of what should be a two week seminar. Adolescents are minds in transition. We don't know what they're going to look like in 10 years. Clinicians are fantastically incompetent at predicting five minutes ahead, let alone five years ahead. Mostly with adolescents. What we do is we try to buy time, we hang in and we wait for integration and maturation and a personality structure that begins to crystallize and that we recognize more like adulthood. And we try to make sure as best we can, that we keep them out of trouble.

Go ahead, take it. So as a psychiatrist right now, I treat primarily adults. I did have some child and adolescent training during residency, but I think this is where we just plant seeds, right? Plant seeds that can grow and blossom over time when we're thinking about the fundamentals of health, right? Are you sleeping well? Dr. Owen, her sleep, teaching kids about sleep, teaching adolescents about the importance of sleep, teaching them the importance about nutrition, like good diets, teaching them about what boundaries are, what that means. And there are some tests of adolescents. Adolescence is the transition from childhood to adulthood. It's not only hormonal changes, there's physical changes, there's social changes, there's identity changes, there's all of these things that are happening. But within those contexts, how those are training, how does one understand their concept of self and think about what they're comfortable with and what they're not comfortable with.

How does one find their voice? How do you ask somebody to stop doing something to you? Or how do you ask or advocate for things that are important to you? So I think this is part of the work with adolescents is recognizing that you have the opportunity to model. We do a lot. We talk about that a lot in psychiatry. How do we model the behaviors that we think will ultimately be helpful? And I think that's a big part of the treatment plan. It's not just about medication, not just about therapy, but holistically. How do we look at this human being and where they are in their life, and then where they want to be or where they want to go.

Thank you. Well said. All right. So thank you both so much for your time, your expertise. I think this was really great.