Patient Awareness Day 2018: Arnold Wilson, Ph.D.

Patient Awareness Day 2018: Arnold Wilson, Ph.D.

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

Panic and Endometrial Pain Syndrome

Arnold Wilson, Ph.D.

- Thank you for inviting me. Thank you Doctor Session. Hello Doctor Goldstein. And all friends in the room today. Mine will be a clinical presentation. I have, as of now, consulted on one hundred and twenty three women with endometriosis. I know that because I counted yesterday, and I come without slides so you'll have to bear with my voice. I listen to them, and as I listen to these young women, describing their internal world, and it's a constant, the varying degrees of individual pain. But over time, I also became sensitized to panic. Over and over again. Panic everywhere. I've heard it everywhere. Likewise, conflicts about containing and managing panic saturated our conversations. Since I...At my age, I'm probably getting better at learning to see what's right in front of me. I began trying to model this. Surprised to say that it is rare to find a woman who is not treated for endometriosis, who is a stranger to a taxing panic. I would estimate that the base rate of panic, in at least within the hundred plus women I saw, is at least 80 percent. At the same time, the experience of endometrial pain is subjective. Such pain is related to a host of factors. Of interest, it is not significantly related to the degree, or the aggressivity of the actual endometrial lesions. It cannot be emphasized strongly enough, that the reactions to endometrial pain, are medio syncretic. We must throw away the playbook, when assessing and treating endometrial pain. There's a polluminous literature elsewhere. For example, in back pain. Which demonstrates that most chronic pain patients screen positive to at least one or more of the common anxiety disorders. And those who have an anxiety disorder also reported significantly worse pain, and health-related quality of life. What comes first, many of these researchers ask? The pain, or the anxiety disorder? This is a tough question to answer. It's hard to see beyond your interaction to an original cause. On the surface, the presence of panic in endometriosis seems like a bit of a no-brainer, doesn't it? Who would not panic, if your internal organs were under such a full-scale systematic assault? Panic is an understandable enterogenic produced a reaction to the amazing plethora of medical misdiagnosis' many women undergo, in which exasperates us to no end. But when taking histories, I noticed something unexpected. If, if I understand the prevailing situation, the place of panic in endometriosis is far more complicated than initially meets the eye. I was surprised, for example, to find that many women reported having panic attacks prior to the overt onset of endometrial symptoms. This can be written off as a pre-morbidity. But that oversimplifies the picture. Why, I ask myself, are 10 to 12 year old girls having panic attacks like this? I wonder, is this an artifact of memory, a person suffering on the remembered past? Is it a specious finding? Could panic, I wonder, be part of the larger overall system? Instatuasconding, that is in the act of form, organizing itself prior to puberty. Is there such a thing as an occult endometriosis? The way there is, for example, occult bleeding. Recently, we have begun hearing about the secret endometriosis. This is endometriosis with no discernible symptoms. The idea of secret, or occult endometriosis, is based on observations of the differences between hard findings and an endometriosis sufferer's subjective reactions, such as pain. The relationship can go two ways. Hard findings, for example, an MRI or an ultrasound. And limited problem, or limited hard findings, and lots of pain. I see a lot of the latter, but they're not hysterias. The problem is solved when we conceived the endometriosis as a complex multi-factorial system. In the lingo of medicine, this might be termed a syndrome, but for the purposes that we're here for today, it allows both pain and panic to be understood as component parts of a complex system, and not as pathologies in their own right. This leads us to study the organization of endometriosis itself, and not the raw phenomenon. I'm now gonna speak of a special kind of panic. The panic I see tends not to be the panic of the inexplicable, of panic without knowing why or when. Nor is it the claustrophobic panic of feeling trapped in a subway or an elevator. Nor is it the existential panic of a search for meaning, in a void of a world demanding compulsory execution. After a while, and after I listen for a long time, I came to understand what it was. It was endometrial panic. Calling it anything else, rationalizes key elements away, and minimizes it's distinctiveness. Again, we throw away the playbook. We can do better than the pro-crossties bed of ill-conceived categories normed on other kinds of patients. If someone sat down to piece together a psychiatric and diagnostic system that intentionally threw women with endometriosis under the bus, it will be hard to do better than the DSM5.

Every women with endometriosis assign a different, and therefore a unique set of meanings to their symptoms. The clinician cannot make the mistake of assuming that since he or she recognizes the sickness, that therefore they understand the meaning of the symptoms. Unless the clinician recognizes, understands, and works with the meanings unconsciously assigned by a particular woman, rather than the fact of those symptoms, the patient will inevitably feel estranged, alone, and isolated. And again that was a lesson that took me years to be taught. And treated like an object, rather than a truly dimensional individual. I think intuitive and gifted clinicians of all stripes naturally work in this manner. But we must do battle with the reductions forced on us by the quest for simple and reputable cures. Once you make this shift, potential remedies appear that are otherwise elusive. But to assess the individual system, two concepts are represented. I'm gonna call them displacements and symbolization. Bear with me. Without them, we are sunk. Through symbolization, an internal object acquires metaphor-like meaning. The representation of a thing becomes as important as the concreteness of the thing itself. I have previously, in previous years of this forum, described how de-symbolization can function as a defense of last resort for the overwhelmed woman. It can be an adaptation to a cocoon-like state, where there is finally respite from the pain and panic. Through displacement, one thing comes to stand or pitch it for another. The mind substitutes either a new aim or a new object for goals felt in their original form to be dangerous or unacceptable. I cannot again emphasize strongly enough, that both displacement and symbolization are unconscious, and can only be reached through the interpreters act. Not the goal of modifying conscious thoughts into better thoughts. Panic and pain can be thought of then as what I would call them, "paired". Paired elements in the endometrial pain syndrome. Unlike other elements, they tend to move together to a jointly causal ongoing progression. They share the work in fitting the symbolization and displacement. That is to say displacements and symbolization act in accord with one another. It merits attention that this understanding is consistent with some of the most recent and interesting models in medicine. But these are topics that are far too long, and involved to take up today. These and other less essential processes become the cornerstones of the endometrial pain systems, from a psychological perspective. Parts of the interactive system can be isolated in theory, but not in practice. Pain and panic participate in the syndrome they display. Please notice that this in no way serves to deny it, that they both exist in some original form. They certainly do. Between the latter though is to untangle them, so as to trace their evolution in the mind of the endometrial sufferer. I am here this morning, today, to test the thought, and in doing so, can lead to relief of seemingly intractable pain and panic. I've been there and done that many times. One young woman, in dramatic fashion over time, came to be able to recognize that when she felt pelvic pain, it meant that she was panicking, and in severe conflict over some matter. She had learned to consciously tie together threads of her endometrial pain syndrome. This provided powerful leverage over internal states, leading toward her eventual recovery, and living a pain-free life. Something else I have seen repeatedly, we can now tackle. And that is the remarkable hypersensitivity to medicines present in many women with endometriosis. Where someone else will start on a dose of 20 milligrams of medicine, the woman with endometriosis must start with 2, 3, 4 milligrams of medicine, otherwise the side-effects become overwhelming. Failures on drug after drug after drug are quite common. And it is quite exasperating again, to hear women describe that they were told to just get tough. Typically, drugs have targets. The targets are symptoms, and not organizations, or systems. Is there some neuronal basis for this drug hypersensitivity? Perhaps, but there is another line to pick with, that might focus on how the elements in endometrial pain syndrome resist change. The dreadful side-effects could then be understood as a syndrome's form of protest. Change must be slow in order for the endometrial pain syndrome to maintain some form of stability. In endometrial treatments, our expectations of time passing can be useful, reconcieved, so as to be native to this disorder and not another symptom or organization. I'm coming to the end now of my talk, and I will offer the normant, my final suggestion.

There are reasons why I think every woman embarking on treatment for endometriosis should automatically be provided, prior to surgery, with a brief psychological treatment for panic. That's right, I'm suggesting that all women prior to surgery be provided with a brief treatment for panic. This to my mind is research begging to get done. Such prototypes of brief treatment for panic disorder already exists in the psychological and medical field. I will take odds if anybody wants to bet that such a treatment will be cost-effective. The cost-effectiveness and certain psychological interventions in other medical disorders is a fact that was established over 20 years ago. The cost of the self-regulating nature of the endometrial pain syndrome, I hypothesized that the best treatment for panic might well, the brief treatment for panic, might well cut down on recovery time, on the need for pain relief, and on post-surgical anguish in general. Such a research trial would provide sorely needed information about how best to facilitate recovery from this disease. But it must be grant funded, and unfortunately, decades ago I gave up that search, that part of my life of chasing grants, so I could spend more time with patients. And I've never regretted it or looked back. I want to thank you for hearing me out this morning.