PATIENT AWARENESS DAY 2018:
LIVING YOUR BEST LIFE WITH ENDO
Sunday, March 18, 2018, (8am-5pm) Einhorn Auditorium (131 E76th st) at Lenox Hill Hospital, NYC
Endometriosis through a Biopsychosocial Lens
Hi everyone, thank you very much for inviting me here today. I'm thrilled how much our awareness and how much has grown up about endometriosis over the past decade and the past years, it's incredible. So my name is Seth Berger. I am a psychiatrist on the Upper West Side and the title of my talk is endometriosis through a biopsychosocial lens. So to start, I will give you the idea of how I got started working with pelvic floor pain. About three years ago, in the same week, I was assessing two women that came into my office for help with mood and anxiety that had co-occurring endometriosis. And at first I didn't really know that much about endometriosis, so I was doing what I normally would do and I was treating their anxiety and mood, and several months later it was just absolutely remarkable how much their pain improved over time. And I was thrilled and it was very rewarding and I wasn't sure, is this talking about the mind-body connection, or was this by chance or coincidence? So I got more and more interested in treating people with pelvic floor pain and learning more about it and talking to more people. And as I was seeing many, many more people, the experience that I saw continued. It was very consistent and the pain was getting better as the anxiety and the mood was treated. So as I made more connections with wonderful pelvic floor specialists here in the city, we'd be working together and collaborate more, as they were finding the same thing, that I was able to really help with the pain by targeting the mood and anxiety. So it's been a rewarding opportunity for everybody and it is now part of my practice. I have a specialty in co-occurring pelvic floor pain. So today what I want to talk about is some of the biological roots for why I think this might be happening and how I think about the psychological impact and the social components. So in terms of the biological overlap of comorbid pelvic floor pain.
First we'll talk more about the chronic pain just for a minute or two and then we'll talk about the anxiety and depression. So chronic pain, especially endometriosis and pelvic floor pain, it's different than your acute pain in that it really has an effect on the central nervous system. So not to bore you with all the details but to just lay down some of the basics so we can talk about the mood and anxiety component is, the main difference is the CNS, nervous system involvement. And with chronic pain there's what's called CNS Centralization, and what that is is that normally we have this effect of the central nervous system that inhibits pain and dampens the pain, but in chronic pain that doesn't work as well so there's more of a heightened state of pain and pain sensitivity from the central nervous system. And that's amplified with the... All right, the peripheral insult that also both of them compounded to make the pain even that much worse. And with this dynamic pain network, we know that it's susceptible to stress, mood, and anxiety and may contribute to the persistence of the pain. Okay. So now we can focus a little bit more on the biological markers of depression and anxiety and how that affects endometriosis and other pain, and we talk a lot about being in anxiety and depression that there's clearly less serotonin and norepinephrine that can be measured in the CNS. And what we don't talk much about is how the serotonin and norepinephrine actually also has an effect on the CNS, the centralization pathway for pain. All right, so what happens is that as we have decreased serotonin and norepinephrine, we're actually less likely to be able to inhibit the pain from that pathway, which ultimately increases one's susceptibility to pain and the way that we receive pain. So by having less serotonin and norepinephrine, we really do have a higher likelihood of that pain perception pathway. And then separate from that, we have the effect of stress. And stress affects the hypothalamic-pituitary axis which then releases the inflammatory markers, which we heard from the beginning how important inflammation is, it is for our inflammation and also increase cortical releasing hormones, which too we know differently will increase the visceral hypersensitivity, so there's two separate biological markers. Now the first aspect with the decreased serotonin norepinephrine, we have medications for that. We talk about it all the time. We have antidepressants. And it's no surprise that when we treat and use antidepressants, that it has a positive effect in mood and anxiety. But it also affects one's pain, and it stops that heightened hypersensitive nervous system response so that it makes you a little bit less susceptible to the pain. But then the other access for the stress response pathway with the corticotrophin hormone and pituitary access is not necessarily a medication or any clean biological that you can do to target that. So what we're going to do is talk more about how we move away from the biological roots and we turn more to the psychological and social models to better understand that.
When we talk about the psychological effects as a psychopharmacologist and somebody who specializes in mood and anxiety disorders, what I've noticed for a long time, there's no question, is that uncertainty and unpredictability in anybody's life, from anything, whether it's a social event or life stressor, I mean it definitely makes anxiety way worse and potentially uberous as well. Now people that suffer from endometriosis, I mean they have so much uncertainty. When is the pain going to come? When am I going to get a flare? What's going to happen, how do I respond to that? How's it going to affect my social life, my friends? Am I going to be able to go out? My family, creating potential tension with family members and loved ones. It affects if one's going to be able to do household chores and take care of regular responsibilities. It affects occupational functioning, getting back to work, going to work, or educational functioning. And when all those are affected it leads to a state of hopelessness at times, and often that can lead to catastrophizing, thinking that the worst is going to happen, that the pain is never going to get better, I'm never going to be functional again. And that affects one's self-esteem and self identity. It affects feelings of inadequacy, ultimately some guilt, and then what typically happens is avoidance. And we see that so often that it's no surprise that when you're feeling so negative, down, and you have a lot of these spiraling, negative thoughts. And with that physical component of the real, true pain that is there, it's almost impossible to do anything. And the more that we avoid we know the more we increase one's anxiety and depression and as we said before, that's going to make the pain worse. So it's this vicious cycle that's really hard to break. But now we're going to look at it from a cognitive frame and it's manageable with the proper tools and global symptom improvement is definitely achievable. So next we'll talk about from a cognitive behavioral standpoint how CBT is a useful way to look at this cycle and try to break it. So there's many different types of psychotherapy and they all have a lot of evidence to support them and all different people and different situations. Cognitive behavioral therapy is a little bit different. It's not focused on one's childhood or one's development or dynamics from 20 years ago. It's really focused on the here and now, on what is going on and the relationship between one's thoughts and feelings and behaviors, and how they all affect one another. And specifically, we look at some cognitive distortions. What are some negative thoughts that we just continue to get into for one reason or another? Catastrophizing thoughts, you know, thinking that the worst is always going to happen, and these irrational thoughts. And the first step is identifying a pattern and then trying to work on it. We use a lot of reframing. How do we look at this from both sides, it's not all negative, and it's definitely not all positive either. So coming up with a well-balanced way to be thinking about this. It takes a lot of time and practice, but it is definitely possible through a CBT frame. And then the behavioral component. You can't teach what you need to do at a time of crisis. It's impossible, it's so hard. But we do know that there are behaviors or things that one can be doing that is potentially within their capability and it's beneficial, and we look at how to incorporate that even when things are not going well. How to look at one's schedule, things that make it really hard for us to do that, what are the obstacles in our way, and thinking ahead of time of what can we do to prepare ourselves for it. It really makes a difference. So a basic example of how CBT is commonly used is when somebody has these thoughts of, you know, the pain is never going to get better, this is the worst pain I've ever had, it's going to be terrible pain forever, and I'm never going to function again. So first we look at some of the underlying feelings behind it, what we call automatic thoughts. Maybe it's some guilt or inadequacy or feelings of a failure. Then we take a step back and we really do try to look at the evidence for and against it. And often times there's a lot of evidence for that. In the moment, you are in so much pain you think it's never going to get any better. That your functioning is not where it was a few months ago, a few days ago, so different. So in the moment, there's a lot of evidence for that. But when you take one step back and you think hey, actually, a few days ago the pain was a little bit better, or a few hours ago the pain was a little bit better, or I've been talking to my doctors and this is what they say is supposed to happen as part of the recovery process. And then you look at the functional aspect, and yes, you might not be at your job and doing as well as you were before, but you're still functioning pretty well. And most people don't give themselves enough credit for leaving their apartment and taking care of some household chores and getting dressed and doing some of the things. So it's about coming up with that well-balanced thought. That yes, the pain is really bad, yes, I feel really uncomfortable, yes, I'm not functioning at the point where I want to be. However, really, the pain is getting a little bit better, every few days, this is the trajectory that I think I'm supposed to be on based on what my doctor said, my functioning is actually much better than one would expect given the pain and I'm doing the best I can, therefore I know that things are going to get better.
When you have that different frame on it, it makes it more tolerable, easier to keep going. So next, to look more at the social relationship of endometriosis and anxiety, I just want to point to a recent study that was published just a few months ago at the University of Texas in Reproductive Sciences where they looked at environmental enrichment for mites that had endometriosis and comorbid anxiety as well as some anxiety behavior tendencies. And environmental enrichment, it's a well-studied field in the behavioral sciences. And it's not just a single manipulation like in most studies, it's a complex, many different manipulations with inanimate objects and social stimulation. And what they found in this model was that on the whole that the mice that were enriched with environmental enrichment and endometriosis, they showed a 28% improvement in lower basal anxiety. The endometriosis vesicles were significantly smaller in size and notice a remarkable improvement in their stress hormones. So how can this be generalized to help everybody else? There was three main findings from the study. The first was about the increased social interactions. The second was about novelty items in the cage, and the third were about the larger enclosure sizes. So looking at each of these three, yes, when there were more mice in the cage, the endometriosis was much better and the anxiety components were much better. So that leads us to believe in the importance of all of one's social interactions, all the supports: family, friends, loved ones, people, but also, support groups. In-person support groups, social media, you know, online support groups, all different social components that really can make it better. And the second is the novelty items. Now this is more about stimulating one's brain, one's mind, staying active, exposure to more hands-on activity and to keep doing things, learning new things, getting your mind back, trying to get back into the mindset of working new about things. In the larger enclosures, the bigger the cage, the more well-lit, the better the mites did. And that's no surprise, and especially in New York City, the apartments are small and a lot don't have a garden and it's really important to try and find a way. Get out of the bedroom, get into a bigger space, go outside when it's nice, meet in larger well-lit spaces, and people do feel much better both in terms of endometriosis and anxiety. So in conclusion, it's really really important to utilize all helpful supports. Family and friends are really more helpful when they're knowledgeable. So it's about sending them literature, sending them websites, talking to them about it. I mean, it's hard for somebody to be empathetic when they really don't know what's going on. So it's important for them to be knowledgeable. For them to have the information and tools at their fingertips. And also talk to them about plans outside of a crisis situation. Rather than talking to them in a pain flare about what's not helpful, talk to them when you're feeling better about what can potentially be helpful and then families and friends will feel more prepared to deal with the crisis situation, and you'll feel better that this is something that you do find helpful. Now also, even when you're feeling well, take time to focus on self care, it is so important. We talk a lot about diet and exercise and meditation and yoga, and in the moment, when things are really bad and the pain is bad, I can't even imagine this idea of getting out of bed. But even just for a minute, 30 seconds, two minutes goes a long way to help set up structure. It helps make you feel like you're doing something. It helps with that behavioral activation component rather than avoiding. You're doing something, you're working towards a bigger goal and you're getting yourself back and ready. Lastly, remember that you're not in this alone. This week there was an article about how is endometriosis the most under recognized women's health crisis of our time, and it's incredible, like everybody of course was talking about. We don't know that much and didn't know that much about endometriosis years ago.
They say from symptom to diagnosis the average time is 10 years. That's an incredibly long period of time that you don't feel with most other illnesses. And that most OB/GYNs, we also heard they don't really even know much about endometriosis and how to treat it. So you're all here, you know about endometriosis. That is a huge strength, a huge positive predictor. And I really encourage you to ask your doctors, ask your team, because what ends up happening when you don't ask is that you go on Google and WebMD, and it's amazing that we have these tools at our fingertips but it leads to way more anxiety. You find forums that people post these things that nobody would understand or make any sense and you can misinterpret. And that makes you more anxious, and ultimately that makes the pain worse, so rather than doing all of that, ask your doctors and your team, they're here to help. Thank you