Endometriosis Treatment: Surgical Decisions, Adjunctive Therapies & Social Determinants

[Dr. Isabel Green]
Yes, I think there's a bunch of challenges for treating endo. One is delay in diagnosis. Two is the different levels and quality of surgery in the sense of quality being degree of excision, ablation. That's an entire conversation to be had in terms of the types of surgery. Then there's, I think, that other huge piece of the fact that patients with endometriosis can have multi-site pain, they can have those overlapping pain conditions, so they're at much higher risk of developing other pain conditions like IC, IBS, chronic migraine, and they also can have myofascial pain as a secondary or a coexisting condition.

We, I think, have been frustrated with the history of treatment of endometriosis, which has been based in medications and surgery and it's been somewhat historical, so I think Frank trying to say, "I don't know that we have the data to support that," is also a way of saying we need to be able to better answer that and understand this as a disease and not just borrow from other disease processes. There are a lot of patients with endo that probably, if you look at them, they are also meeting criteria for those other overlapping pain conditions and fibromyalgia and chronic pain, where there is a role for those medications, those alternative to opiates, those chronic pain medications to help with that sensitization and that process of dysregulation.

[Dr. Amy Park]
Yes, because there's the pain component but there's also the hormonal component. I think there's like really good evidence about the adjunct hormonal therapies like OCPs or what have you, but it is interesting postmenopausal endo or the whole role of oophorectomy. These were all debates that have evolved over the course of my career and I've seen it swing one way and the other. We don't have good subtyping and urogyn either. There's lots of pathways to overactive bladder, lots of paths to prolapse, but we end up all treating it the same.

It would be nice if we could tailor the therapy with a little bit more precision, and I guess we're not there yet. I was hoping that there was more because I'm not, like I said, in tune and going to IPPs like you guys are, but it seems like there's more scholarship in this arena. That's actually good and interesting, but I think that it just points to the underfunding of these basic science and pathophysiologic questions.

[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.