Podcast Transcript: Persistent Pain in Endometriosis Patients

[Dr. Amy Park]
The thing that I think about is this whole concept of the delay of diagnosis. You have a nerve injury and then back in the days of transvaginal mesh kits or whatever [unintelligible 00:44:44] entrapment, you get it right away, you take out the stitch, it's fine but if it's greater than-- we don't even know how long a period of time it takes then it becomes a chronic problem. I see this manifest in different arenas. I don't know if you guys read a couple of weeks ago in the New York Times, there's that concept of weathering.

These black teenagers, if they entered motherhood when they were teenagers, they were fine, but as they got older the outcomes got worse. It's like your body undergoes this stress associated with all these social determinants of health and whatever. Endometriosis is a true physical issue and the more you've traveled down that path, the harder it is to reverse or what have you. It's a big problem. I was talking about this with my resident in clinic many years ago. I came out and I was like, "Gosh, this patient is so negative, and the doctors." A lot of doctors can't-- residents and a lot of doctors do treat their patients with pain really poorly. [chuckles] There's a lot of heterogeneity in the way the patients get diagnosed and treated and validated like you alluded to earlier, Isabel.

All of that is part of the art of medicine and doctoring and it's tough. I see all these gaps in our knowledge and our patient care getting filled by the internet. They're going to Facebook [chuckles] groups to get advice. It is very sobering but also fascinating what's been bubbling up. Actually, then you see academic literature analysis of the social media I'm using [chuckles] which I also love, but it does inform us of what's going on. There's stuff like, I didn't even think about this and boo on me.

I don't put in a lot of IUDs, but the pain with IUD insertion that became a thing on TikTok and Green Journal article and all these other things and endometriosis the same way. It's like the patients are bringing up all this patient experience stuff. Now the celebrities are coming forward and saying, "Give raising awareness", which I also find super fascinating. The lists of the vetted surgeons that you guys I'm sure part of and acknowledged it's part of the vernacular. I find it all really fascinating. I'm in parallel to it. I am on some lists. Like on Facebook, some patient told me, "It's not like for you guys totally different."

[Dr. Mark Hoffman]
I'm not on Facebook. I want to hear Isabel's feeling about all these things. Some of these groups are very strong in their feelings about one approach to management or another. Some are excision is it. If you don't do these massive excision surgeries, you're not managing endometriosis and others-- everyone has their feelings about it. This is coming from a place of pain and frustration and failure from the medical system on these folks. I can see where this is coming from, but as a surgeon with what we're talking about how complex it is, it's hard for me to believe that there's a simple approach to managing this incredibly complex disease process.

[Dr. Isabel Green]
Of all the data on surgery that exists, the best data is on excision of deep endo, nodules of endo, uterosacral fibrosis. If you can imagine going through an experience of being delayed in a diagnosis or seeing multiple providers and there is this treatment that has some good inner research to support outcomes, I think I understand that mission to educate and to promote that option for these patients. If you follow social media, it's interesting in that I do think that there's this greater sense now though of the complexity. I think that wave is coming and I think people are appreciating that even excision of deep endo and fibrosis and scarring is helpful, but there are extra abdominal manifestations of disease.

There's other things happening that I think there's a greater understanding and sharing that it's a heterogeneous disorder and not just solely explained or treated with the surgery. I get though that if you've had a lot of poor outcomes and poor treatments and there is something that has evidence behind it. I think what's hard is that there's not great evidence in the world of superficial disease. Those are probably the patients that we understand the least because they have the smallest disease and significant pain and persistent pain a lot of times after excision.

From a patient's perspective, I understand it. I think what helps is to talk to patients about what we do know. We do know that if you have another overlapping pain condition. We know that the outcome of your excision surgery is less robust if we don't address those other sources. Not that excision surgery isn't needed for your pain, but that we really do need to cover all our bases to get the best outcome we can for our patients, and so trying to put excision surgery, I think, in the context of a multimodal therapy, I think is the individualized way to treat patients, and I think that resonates. It's this or that, I think. It's excision surgery or chronic pain meds. It's excision surgery or psych. There's a role for all those components depending on that exact patient. Each patient's going to be different.

[Dr. Mark Hoffman]
I think that's one of the things where MIGS has found a niche and has found a role in-- I'm calling it MIGS, I think is a misnomer, but I think there are oncologists that can do resection. There are certainly many different types of OBGYNs who can provide birth control pills, but having someone that is dedicated to managing endometriosis is a major part of their practice and can spend the time and energy, and effort to think about all of the different manifestations of the disease or many of them of the other comorbid conditions and can focus on all those things.

Like you said, the marathon of managing endometriosis as opposed to like, "Oh, I can do your surgery," but that's not what this disease requires. Requires listening, it requires time, it requires an exam. It requires understanding the limitations of what we know and what we don't know. It's managing long-term and dealing with those failures along the way when they come up. I think that's where I would love to see more research on outcomes from these multidisciplinary, multispecialty endometriosis programs, because my guess is that's where-- and if literature is out there, please share it with us.

Because having someone who can look at it from that perspective allows patients the opportunity to be managed by someone who has access to all or as many of the treatment options as we have at the moment.

[Dr. Isabel Green]
Yes. I think we have good data to guide us that those questions that we've had as we've seen our patients, the answers were yes. The answers were that one of our patients who also has irritable bowel syndrome and chronic migraines is going to have a different outcome from surgery than someone who has solely dysmenorrhea and dyspareunia and undergoes surgery. Now that we know that the answers are yes, that's true, next is that interesting question of what's the right combination of therapies, what's the right timing?

I think as surgeons, a lot of us think that get rid of that pain generator that we can see, feel, touch, excise first, and then continue with the patient on the journey of physical therapy and other things. I think that's an interesting question, and there's some trials on physical therapy pretreatment, post-treatment surgery in combination with cognitive behavioral therapy, things like that. Again, those studies will only be helpful if they have a more homogeneous population that's well defined to really describe a phenotype of endo and chronic pelvic pain, not all comers because a lot of patients probably don't need it necessarily.

I think the literature is telling us that, yes, there are differences and now the next step is how does that change how we treat and in what order we treat and things like that. There's so many questions at the beginning like how could we diagnose endo more accurately without surgery? That's the research of biomarkers, which is exciting. There's some interesting stuff coming out of Yale in that regard and hopefully, that will pan out further.

Then there's the complexity at the other end once people have chronic pain disorders and overlapping pain conditions and the questions there. Then, to me, I think that middle world is those patients where even that first good surgery doesn't yield the response we're hoping for. I really hope we can learn more about that disease process and have more than the medications and the surgery to treat them with.

[Dr. Mark Hoffman]
Isabel, you've given us a lot. It is such a complex disease. I know you're busy, we don't want to keep you all night. I feel like we should have parts two through six of this conversation, but I think it's important to know that there are people out there like you that are trying to understand this complex thing. There are people out there that are trying as hard as they can to figure out where endometriosis comes from, how we treat it, working in conjunction with other great dedicated surgeons.

I'm very lucky where I am. I've got a colorectal surgeon who is like, "Let's figure out endometriosis together." He's just in it to win it. He's not like, "I got to come over and help them." I mean, genuinely cares, and there's a lot of people out there that do. Just coming on to BackTable and sharing what you know and your experience and about your practice, and is extremely valuable for those of us out there that are exposed to endometriosis, that are exposed to patients that have these things and to bring awareness.

Those of us who do this, it's all we think about, but out in the community, if nothing else, to maybe have them think about endometriosis sooner in their evaluation, differential and referral and those kinds of things, I think can be really powerful. Your time is valuable, we know, but we're so grateful that you've made the time to come on and talk to us about endometriosis. Again, I feel like we could go on for days about it, but we just want to say thank you so much for taking the time to talk to us.

[Dr. Isabel Green]
Thanks so much for having me. I think that I'm grateful that we're having conversations about all the things that we need to learn and do better for, and I feel like we're at a turning point and hopefully, we'll get additional research funding to really start to work on answering those questions. As Amy said, I think that's a huge piece of this is we can only answer the questions that we can really study and delve into. I'm hopeful, though, for the future. I think that that's also where the patient advocates, I think, are really pushing that important agenda. Agenda sometimes doesn't sound great, but it's a really essential agenda and this disease deserves a lot of attention.

[Dr. Mark Hoffman]
Doctors like you give, I think, us all a great deal of hope.

[Dr. Amy Park]
Thanks, Isabel.