Thoracic Endometriosis Treatment: A Multi-Faceted Approach

[Dr. Mark Hoffman]
Do you have a theory about endometriosis, about what it is, where it comes from? I think we all have our own ideas about it, but the idea that it's just retrograde menstruation, come on. Everyone has that, and most people don't have endometriosis. How do you get it in the lung from retrograde menstruation? We have all these theories, but I always like to ask what do you think endometriosis is and where does it come from?

[Dr. Shanti Mohling]
In answer to etiology of endometriosis, of course, being an excision person, I'm sitting on the Müllerian embryology post. I believe we were mostly born with it, and then we have an overlay of environment.

Genetic predisposition plus environment overlay. I don't know if you know I published a paper on intestinal permeability and endometriosis, which is a pilot study, but suggesting that there is increased what we call leaky gut or impaired intestinal permeability in patients with endometriosis, as opposed to controls. That is true very high percentage-wise with celiac disease. Celiac patients have markedly increased intestinal permeability at the onset of their disease. That's a whole nother conversation.

In terms of etiology, I think most of it is embryologic, congenital. We're born with these gonadal tracks that somehow, the cells migrating during embryogenesis didn't fully make it and then become dysfunctional, somehow. That's my working theory. On the other hand, I do think that there is the possibility that there are some cases where retrograde menstruation may play a role in a truly unhealthy environment of the pelvis. We, for sure, know that we get seeding at the time of a C-section that becomes an endometrioma in 1% to 3% of C-sections. We can also have spontaneous abdominal wall endometriomas too, which may be more Müllerian.

I do believe that most of it is derived congenitally or embryologic in origin, but that there certainly are going to be other factors. It's been found in lymph nodes. Is there some other etiology? Sometimes, like cancers too, not everything starts in one specific way. Some of it's viral, some of it's environmental, some of it's genetic predisposition. Definitely, I think there's genetic predisposition. I think there is epigenetic overlay in terms of environment impact. Some of it may be retrograde, in some cases, retrograde menstruation. I don't know.

[Dr. Mark Hoffman]
Love it. No, I think that's where we don't have a lot of diseases. We just don't know where it comes from. They're out there in other specialties, but certainly, for us, it's one of those things. We think about preeclampsia in our world, but it is something that I'm eagerly anticipating a breakthrough. I think our patients are long overdue for an answer. It is going to be something that will be cause for major celebration if we can understand where this comes from so we could think about other modalities, other ways to treat it. In the meantime, we have people like you who have dedicated their lives to being able to treat this disease when it becomes more advanced.
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[Dr. Mark Hoffman]
Yes. Talk about the disease we leave behind because this is something that I ask a lot of our guests about. Reading The Emperor of All Maladies, which is a book I talk about not infrequently on the show, but the idea that back in the day, we saw cancer as a surgical disease, we just had to cut more of it out. Then you realize, no, this is cellular disease. This is DNA. This is not something we can see with our naked eyes. One of my GYN oncology colleagues told me the other day, she's like, "If you look back 100 years, all of the surgical advancement we have in cancer care is medical."

All of the advancements, whether it's chemo, whether it's radiation, whether it's targeted therapies and those kinds of things, the surgery hasn't really-- Laparoscopic, sure, but otherwise, in terms of we're doing less surgery, that's really the advance. We don't have to do as much because of the medical management because of the neoadjuvant therapies and those things, or targeted therapies. It still feels like with endometriosis, that we're a little bit behind. I think what you do is so important because we don't know the source or cause of endometriosis, and we have to deal with more advanced disease.

[Dr. Shanti Mohling]
…do I leave disease behind? Of course, sometimes I'm sure I'm leaving some cells behind. Sometimes I'm probably leaving a little fibrosis behind. When someone's primary goal is fertility, I'm sure that I'm leaving a little disease on the ovaries because I don't want to compromise their reserve. Generally, I do pretty wide excision peritonectomy way beyond the high focal points of what appears to be disease.

[Dr. Mark Hoffman]
Are you doing that for even Stage 1? You're doing Y resection, or are you really talking about more advanced disease?

[Dr. Shanti Mohling]
It depends. If someone is a teenager and they have a tiny spot, I'm not going to do a full peritonectomy. I've seen teens with Stage 3 disease too. It depends on their history, it depends on our conversation and depends on their age and their future goals, and in how much normal-appearing tissue I would take. I'm going to limit that in a teenager, for sure, or a young person who hasn't-- If they have really early disease, it depends on their pain and their future fertility. That conversation we would have had.

[Dr. Mark Hoffman]
Ultimately, how much does medical management play into it for you? I know patients probably by the time they come to see you have gone through a bunch of that stuff. How much in your practice are you talking about medical management with surgical excision, after surgical excision? Do you always recommend hormonal suppression after surgical resection, or do you feel like you got it all, there's nothing to treat?

[Dr. Shanti Mohling]
This is the million-dollar question. I do not insist on hormonal management after excision, and I've had good success with that so far. I almost never use GnRH analogs, almost never. I prefer progestin because that combination, birth control pills, I think that we don't really have good information about how they really affect endometriosis. I do know, we know, that the levels of estradiol are four to five times physiologic levels when you're using a birth control pill.

[Dr. Mark Hoffman]
Is norethindrone your primary?

[Dr. Shanti Mohling]
Norethindrone, drosperinone, some of the progestin-only pills have other-- A Mirena IUD can be a wonderful option for people. Some of my patients also want bioidentical progesterone, and they prefer it. By the time patients come to me, they have run the full gamut of hormonal trials, and they don't even want to hear me ask them if they've used them in the past. I have to reassure them that I'm not quizzing them to make sure they will stay on it or something. They're so hypersensitized to being asked to be on hormones.

I'm very gentle with my approach in that I think that it's very individual, and it may be that it is beneficial. I would say most endometriosis excision surgeries across the world even, insist on some type of hormonal treatment postoperatively. That's really rare in that, actually, that I don't. I do love when someone is willing to do a Mirena IUD unless they are looking forward to trying to get pregnant. I also am open, if someone has done well in the past with a Nexplanon or with a birth control pill, I'm happy to let them stay on it and support that, yes. Does that answer your question?

[Dr. Mark Hoffman]
Yes, no, I like to ask about practice patterns because ultimately, I think a lot of us are out there trying to help patients with endometriosis. We have, again, some good information, but it's pretty limited information. We all have a little bit of a variable practice in how we do it. I think our approach to management of endometriosis is variable because there's no standard data. There's no paper that says this is the way to do it. That's unfortunate for our patients. I'm always curious to know how other surgeons, how other gynecologic experts are managing endometriosis because I'm with you.

I don't insist on treatments. I see myself as a consultant, they come to see me. I tell them what I know. I tell them what I think. I'll do a thorough evaluation, like you said, a complete history, a thorough pelvic exam, which can be very helpful in finding other non-gynecologic causes of pain as well. Ultimately, I make recommendations. Patients don't want to do something, then that's, of course, it's their choice. Patients have to be a part of the decision-making. They're the ones, it's their bodies. We have to be respectful of that. I don't want hormones.

I don't talk about hormones. I want surgery. Okay. You've had that opportunity to discuss it, and this is what I think and this is, but ultimately this is what you decide. These are the numbers that we know. When patients make a decision for themselves, we respect it. I think it's an important thing to listen to our patients and allow them to guide the care to a degree that both the physician and the patient feel comfortable with. I think that's the other piece. If someone says, "I want this thing done, that makes no sense," the physician can also say, "I understand you. I trust you. I believe you. That's not something I'm comfortable with. Here's a name of a person who might be willing to do it."

[Dr. Shanti Mohling]
[chuckles] Indeed.

[Dr. Mark Hoffman]
I'm not saying they can tell us what to do, but at the same time, it's important to make them feel heard and valued and to believe their pain, and all those things. It is a relationship that you have to work at for sure because this is something, especially I'm guessing in the population of patients that you see, these are folks that have been suffering for a very long time.