Endometrioma: The Hidden Sign of Deep Endometriosis That Could Affect Fertility | Amanda Chu

Dr. Brighten: [00:00:00] What exactly is an endometrioma and what makes it different than other ovarian cysts? 

Dr. Amanda Chu: An endometrioma to me is just a endometriosis implant within the ovary, right? And so it has this very classic appearance on ultrasound. We- the other name for an endometrioma is a chocolate cyst, uh, and it gets that- Dr.

Narrator: Amanda Chu- Is a leading endometriosis surgeon and longtime advocate through the Endometriosis Foundation of America- On a mission to break the stigma, challenge misinformation- And help women get the care they deserve. 

Dr. Amanda Chu: So when you see an endometrioma on a macroscopic level, you know something is incredibly wrong.

You're dealing with likely at least stage three disease, so more advanced disease. So these are small epicenters of pain, inflammation, estrogen. 

Dr. Brighten: Can an endometrioma permanently damage the ovary if it's left untreated? 

Dr. Amanda Chu: We've documented this and studied this fairly well to say that it- 

Dr. Brighten: Can an endometrioma permanently damage the ovary if it's left untreated?

Dr. Amanda Chu: We've documented this and studied this fairly well to say that it, it damages the ovary. So we look at certain markers. One of them is AMH, so anti-Mullerian hormone, and that's [00:01:00] produced by some of the very, um, early, early eggs, we'd say. But we do know that it is a marker of ovarian reserve, so how many eggs that you currently have.

And we know that over time, if you leave endometriomas, you know, in situ untreated, that number goes down dramatically compared to someone who doesn't have that. So just by the default of them being there, they are, you know, they're, they're causing... I don't wanna say destruction. That seems aggressive. But they, they are, uh, they are making a mark.

So I think all endometriomas in some way should be treated, or at least you should be counseled on what impact they could have so you can make the decision of what you want in terms of treatment. Endometriomas are basically a manifestation of deep infiltrating endometriosis in your ovary. What is quite easy to see on imaging is an endometrioma.

Mm-hmm. So once that's diagnosed, it may then lead you down, hopefully, the right path, um, potentially faster than if you didn't have that [00:02:00] diagnosis. But I always say it's, it's sort of like the tip of the iceberg because if you have an endometrioma, well, we, we have other things to talk about, right? Yeah. And a lot of them impact, uh, fertility, unfortunately, even, you know, in more ways than what we'd call, uh, earlier stage endometriosis, peritoneal endometriosis.

Mm-hmm. Um, I think a lot of us have tried to move away from the term superficial endometriosis, um, just for sort of the implications of that. Um, so I, I use the term peritoneal a lot interchangeably, but peritoneal and deep endometriosis. 

Dr. Brighten: Someone has never heard of an endometrioma. This is the first time they're hearing it.

What exactly is an endometrioma, and what makes it different than other ovarian cysts? 

Dr. Amanda Chu: An endometrioma to me is just a endometriosis implant within the ovary, right? And so it has this very classic appearance on ultrasound. We- the other name for an endometrioma is a chocolate cyst, uh, and it gets that- Gets that name because if you open it, it's literally like a Willy Wonka's river, river in there.

So you will see sort of chocolatey fluid come out, and [00:03:00] that's a representation of old blood, inflammatory debris, uh, iron, things like that. So, you know, I always say that these cysts are sort of physiologically active, um, and unfortunately active in sort of all the wrong ways. The difference, I mean, there's so many different types of cysts, and some are

We always sort of classify them as benign, non-benign. You know, these are benign cysts, but I do think they have sort of this, um, sort of these sort of malignant or adverse impacts- Mm ... to the ovary. 

Dr. Brighten: I think it's important we, we kind of differentiate that for people because we say benign. We know what that means in medicine, but the average person hears benign and thinks, "Oh, you mean this does nothing?

It doesn't cause harm? It's not painful?" And that's not true. The patient experience versus the clinical and diagnostic application of benign is different. So can you explain the difference between benign and malignant and why we're not calling endometriomas malignant? 

Dr. Amanda Chu: Malignant, we're referring to cancer, and [00:04:00] in a good way, endometriosis is not cancer.

Uh, the issue is that when you have, you know, a malignant cyst, I, I do think that's treated very seriously, as it should be. But when you hear the word benign, it is often dismissed, right? So I, I find that very often, right? "Oh, it's just an endometrioma. Uh, don't worry about it," you know? And I, unfortunately, you know, I think maybe we are a little bit more aggressive in our counseling because by the time they see us maybe years later, we are worrying about it.

We're dealing with the repercussions of that, and a lot of them are, are related to fertility, right- Mm-hmm ... and infertility. Um, and so I think, you know, we had talked, you know, we had had this thought before of, you know, at what age when you present with an endometrioma. So I always say, you know, if you're young and you have an endometrioma diagnosed, again, it's, it's good and it's bad, right?

We have space to work. We have more information. We're able to talk about options for patients. Um, but you're young and you have advanced disease, so that's not [00:05:00] great either . Uh, versus having it diagnosed at a, sort of a later age. Um, maybe your symptoms have come later. And so, um, a- again, challenges on both ends of that spectrum.

Dr. Brighten: What makes endometrioma pain worse, and what can you do to lessen that? 

Dr. Amanda Chu: Okay, so endometrioma pain, um, I think it follows similar, uh, you know, similar symptomatology as, as endometriosis. So anything that can improve your endometriosis related pain can also improve your endometrioma pain, because to me it is just one location of endometriosis.

I put pain in these big buckets like inflammatory pain, musculoskeletal pain, uh, pain from scar tissue, and nerve related pain. When we think about these, you know, big groups, how do we target them, right? And so inflammatory pain, this is, this is, you know, trying to give back a little bit of control to patients to say, "Okay, what can you do to reduce your inflammation?"

I make a, a really, a [00:06:00] really bad joke to a lot of patients and say, "I can cut out your endometriosis, but I can't cut out, you know, the bad food you eat at 3:00 AM, or, you know, a, a bad friend who's, you know, been, you know, been mean to you," things like this. All of these things impact how you feel. 

Dr. Brighten: Mm. 

Dr. Amanda Chu: And so I think those are really important things that you can do on your own.

So we've, um, so yeah. 

Dr. Brighten: I don't think you hear a lot of surgeons speaking about nutrition, about relationships when it comes to inflammation and endometriosis. But I will say the best of the best excision surgeons, in my opinion, always talk about the nutrition component. 

Dr. Amanda Chu: Yeah. 

Dr. Brighten: You said something at the top of this.

You said if you have an endometrioma, that's a sign of deeper endometriosis. Can you explain that? 

Dr. Amanda Chu: If we really talk about types of endometriosis, staging of endometriosis, so if we sort of go back, we stage endometriosis one, two, three, four. There's a variety of staging systems. [00:07:00] They all have their limitations.

Uh, the most common is put out by our reproductive society, ASRM, um- But, you know, we talk one, two, stage one and two would be the earlier stage disease. That's the disease that sits primarily on the surface of organs, um, you know, to a certain depth, hasn't invaded. When we go to stage three, stage four, that's where we're talking about D-I-E, DIE, deeply infiltrative endometriosis.

And to me, and I think to most surgeons, when you see an endometrioma, you know that you're dealing with likely at least stage three disease, so more advanced disease. 

Narrator: Mm-hmm. 

Dr. Amanda Chu: Um, and so that's an important distinction. And I always ... I say a lot to patients, like, "I could put my camera into 10 women that are 30 and that are, you know, say Hispanic, and I will find thir- y- 10 different pelvises," right?

And so what does that tell you? It tells you that the progression is very different for different individuals, you know. So it's, you know, I think that's a, that's a big [00:08:00] challenge here to say, you know, where, at what point are we diagnosing this? 

Dr. Brighten: When a doctor says, "Hmm, it's just stage one or stage two, it can't be that bad.

It can't be causing you that much pain," is there any truth to that? 

Dr. Amanda Chu: No, and I think that's incredibly offensive. People come to, you know, endometriosis surgeons for two reasons. One are the incredibly complex surgeries, you know, multidisciplinary care, but one is just like a, a completely, like, different fundamental understanding of this disease.

So I always tell patients, you know, this is a disease that starts microscopically, so when you can see it on a macroscopic level, you know something is incredibly wrong. Mm-hmm. Um, you know, we know that endometriosis lesions are Sort of incredible. They're not quite cancer, they're not quite autoimmune.

What are they? We're still trying to figure that out, but they can create their own estrogen. They can create their own nerves. So these are small epicenters of pain, inflammation, estrogen, uh, and they grow themselves, right? Mm-hmm. And so that is where the pain is [00:09:00] coming from, and I, I actually force a lot of patients to do this.

I tell them to take their hand and run it up and down their arm, and I say, "Can you feel that?" And I, I ... No one has said no yet, okay? Um, but the idea here is do you see the nerves? Do you see what, you know, how that's innervated? You cannot see that, right? Mm. And so by, you know, de facto, when you can see lesions on the peritoneum, which is that sort of beautiful lining that covers your intern- internal organs, you know, there's a problem, right?

And so, um, so yeah, absolutely stage I ... And that's why they, you know, the grading systems have never been perfect because they have never been able to truly encapsulate what patients are actually feeling- 

Dr. Brighten: Mm-hmm ... 

Dr. Amanda Chu: um, or understand it actually. 

Dr. Brighten: How often are endometriomas missed in a general practitioner's practice?

Dr. Amanda Chu: I mean, I think if you don't look, quite often. It's challenging. 10 to 15%, we say, of endometriosis is silent, so in those patients it's incredibly challenging to diagnose it obviously if, if you're not symptomatic from this disease. [00:10:00] Sort of that fifth symptom is infertility, so it may present quite, quite a bit later down the road.

Um, when you are, um, when you are having symptoms, so you know, painful periods, painful intimacy, I do often think a transvaginal ultrasound is appropriate, and I would hope most, um, primary OBGYNs are, um- Are prescribing that or are getting that for their patients. So I, that's sort of what I alluded to earlier was that, you know, not everyone has endometriomas, but at least it's visible on ultrasound to a, a fairly high degree.

Dr. Brighten: I was going through IVF. Everybody knows. You have more of an intimate relationship with a transvaginal ultrasound than you do with your own partner when you're going through IVF. And yet, after my third retrieval, I was, like, in the worst pain of my life. It was like, um, three weeks I couldn't get out of bed.

I didn't know what was going on with me. And I happened, Prunovo was like, "Do you want a full body MRI? We'll trade you that for, like, doing a post on social media." I'm like, "Yeah, let's [00:11:00] go." So I get this full body MRI, and this is, like, a couple months later, and it comes back, and it's like, "You have signs suggestive of an endometrioma."

They can't diagnose anything with a full body MRI, but they can flag it. They're like, "You have signs suggestive of adenomyosis, endometriomas. Like, there looks like there's other lesions. You need to meet with someone and have this checked out." And my fertility clinic, when I brought that to them, my husband had, uh, never witnessed gaslighting in real life, but the doctor, he was like, "Adenomyosis is the new trendy diagnosis that everyone thinks they have, like ADHD."

And I was like- 

Dr. Amanda Chu: Trendy. ... 

Dr. Brighten: what? This is objective finding, bro. And I'm like, "Well, what about the endometriomas?" And he's like, "I don't think that's what those are." And I was like, "Second opinion." Um, and I left, and yeah, I ended up doing, um, the MRI, uh, mapping protocol, and sure enough, uh, we sent it off to radiologists.

ENZIAN score is like, you got endometriosis [00:12:00] everywhere. And I'm like, how was I in a fertility clinic getting this transvaginal ultrasound, having all of this done, having the symptoms of endometriosis, and still they were like, "No, it's probably not that. It's probably not that." 

Dr. Amanda Chu: Yeah, I have, I think, a love-hate, uh, with a lot of fertility specialists.

I have found that that is not an uncommon story. Um, and I don't understand why, because we can work collaboratively. I send a lot of patients for egg freezing. I feel like they are You know, they think that surgeons just wanna take ovaries for fun. We don't wanna do that. We actually, you know, we have well-documented evidence that we improve spontaneous fertility.

So we, you know, our goals are our patient goals, and I think that, you know, there is a population that has silent endo, but actually a, a huge percentage of their patients, uh, have endometriosis, and they've sort of been taught that it's okay, you know, you can give drugs, you can overcome endometriosis. You can bypass the tubes.

You can bypass certain things. But [00:13:00] why were the tubes blocked in the first place? Mm-hmm. Right? Uh, it's, it's sort of this really interesting, um, you know, division within our field. Um, and I, and I think I always tell patients to really think, like I know IVF, ART, very, very common in our days, right? And, but, you know, 50 years ago, we were not really doing IVF, ART.

And so these are still new challenges that we're facing now. There are a lot of, uh, frozen eggs that we don't know if, you know, are, we're gonna go back to, things like that. So I think while it seems commonplace, we are still basing a lot of these things on old, quote-unquote, "data." Mm-hmm. Um, and I don't think I have to tell you that the data in women's health isn't great.

So I have a number of problems with, uh, the new clinical guidelines. I wanna start off by saying sort of the good, right? What we're comparing this to is this old practice bulletin that they first wrote, I think, in [00:14:00] 1999, and they updated in 2010 or 2011. So it's been 15 years. We've really been waiting for this.

Mm-hmm. That past, uh, bulletin, which is what I think I read when I was training, they really sort of were like, "We think it's Sampson's theory, and maybe there's some other things, but we're not really sure." At least in this, you know, clinical guideline, they recognize that the etiology is multifactorial.

They actually said the word, you know, you know, immunologic dysfunction, epigenetics. These are really important things, and I think if you're really thinking about endometriosis, you know them to be 100% true. 

Narrator: Mm-hmm. 

Dr. Amanda Chu: Um, we at least recognize the delay to care, sort of the, uh, misinformation that's out there, the lack of training, uh, the dismissal of patients.

That wasn't in anything before. Um, so we're recognizing it. But then I sort of saw, like diagnosis. A lot of these other things haven't changed. Ah, no, s- I'm sorry, one thing. They did say previously ultrasound and imaging was only good if you had an [00:15:00] adnexal mass. So basically only good if you had an endometrioma.

So they are sort of recognizing, hey, we got better at imaging. Surprise, right? Mm-hmm. So dedicated centers, um, can potentially find invasive endometriosis. So those are good points Now onto the things that I had a problem with. I, I saw who wrote, you know, I looked at, you know, the three authors, and I said, "Who are these people?"

I would say that the primary specialty that treats this disease now is MIGS, so minimally invasive gynecologic surgeons. And there was not a single MIGS provider on there, and there was family planning, and I think there was a fertility specialist. And so I think it's really challenging when you have people speaking about this disease where it's not 50% of your clinical practice, 80%, maybe even 20%.

I'm not, I'm not 100% sure. Um, and I also have to sort of compare them to guidelines that maybe you even alluded to, like the ASRM guidelines. Those guidelines put out, they're put out by the, a European society of fertility. You know, they're 190 pages, right? So we got maybe 10 [00:16:00] pages, and I was sort of like, you know, "Where's, where's the rest of this?"

And we only got to diagnosis. I was like, "I think we're gonna wait another 15 years for the rest of it." Mm. Um, and nothing in those guidelines told me anything that I think if you treat endometriosis patients you shouldn't know at baseline, right? So I think th- that was really disappointing, and I h- and I have a confession in that I haven't renewed my ACOG guideline, so I

It was behind a paywall, and I was really upset. I couldn't even access the guidelines. Yeah. Right? And so, and to be clear, ACOG and ACOG, our accrediting board, is completely different. So ACOG, um, you know, puts out a lot of our, sort of our general guidelines, you know, in the US. And so I had to go to a colleague, ask for them, and I think I'm gonna continue to let those lapse because it wasn't helpful for me.

Mm-hmm. Right? And that was, that's just a shame. 

Dr. Brighten: Let me ask you, though, why does ACOG believe they have the right to put these guidelines behind a paywall when other [00:17:00] societies internationally make these completely available because they know it will change the standard of practice to be better for women's health?

Dr. Amanda Chu: I don't know. Make it make sense. 

Dr. Brighten: ACOG and most gynecologists always bring endometriosis back to, "Do you want a baby? Yes or no?" That's gonna determine everything for you. And we're gonna talk, we're talking about fertility, and it is important, and women should be able to hold a baby in their arms if that's their goal.

But also, the complete reduction of endometriosis to only being in our pelvis, only being a reproductive issue negates very ser- serious complications. I mean, recent research showing the impact on our neurological health, the impact on our cardiovascular health- Yeah ... the way my jaw dropped at the cardiovascular risks that go up and how women under the age of 40 are at significant risk for cardiovascular events, including stroke, that right there made me pause of, like, and we're [00:18:00] giving them the birth control pill.

Dr. Amanda Chu: Even that bulletin, we didn't address post-menopausal patients. We, you know, we just, we just didn't address so many different populations. I don't, I don't think, I think it's hard to know where to begin with that. And, and look, yes, they get a pat on the back. They are trying. Um, but I just, I think for a population that has been waiting and expecting so much, I think if you had honestly just held off and come up with, uh, more inclusive guidelines, that would've been better.

Mm-hmm. Um, and to open up the door and the panel to, uh, providers that are treating this disease more regularly. 

Dr. Brighten: Well, let me ask you, if someone is listening and they've learned they have an endometrioma, is there anything they can do to start to support their body to protect their future fertility?

What's, like, something they could start to implement tomorrow? And then we're gonna go further into talking about surgical, you know, application as well. 

Dr. Amanda Chu: The challenging thing with endometriomas is that they come back. There's a recurrence [00:19:00] rate. So even if you take them out, they can come back. And one of the things that we know that hormones treat, and I'm usually talking progestin-based hormones, um, or progesterone, um- Is that, you know, if we don't treat them, they have the ability to come back and continue to damage that ovarian reserve.

Mm-hmm. So for a lot of patients, you know, peritoneal patients, patients with deep endometriosis without endometriomas, I talk about, uh, hormonal suppression, but I am, and I ... But I really try to hammer it home with my endometrioma patients because it's really challenging. We take it out, it comes back. We take it out, it has a chance.

And so I think that is a big one. Um, we talk, and, you know, we can talk about it a little bit later, but endometrioma patients do have a higher risk of ovary cancer, and actually hormonal management reduces your risk of ovarian cancer- 

Dr. Brighten: Mm-hmm ... 

Dr. Amanda Chu: the longer you take it. Hmm. And so, you know, whatever you can tolerate, if you can tolerate, that's sort of the conversation I [00:20:00] take with my patients.

I said, "I wanna give you quality of life. You know, if I had, you know, everything I could have, you know, within the same sort of bag, I, I would give it to you. But if we can ... If this is what we can have, you know, which means, you know, recurrence risk reduced, um, ovarian cancer risk reduced, I will take it. But if you cannot tolerate this, then okay, maybe we will be monitoring you closely.

Maybe we'll be doing, trying to do something else for you." Um, maybe you can speak on some of the supplements. You know, I have a lot of ... The funny thing is I've learned about so many things from my own patients. No one is more resilient than an endometriosis patient with the internet, okay? Um, and so things like DIM.

How do you reduce your natural estrogen? How do you try to sort of follow the tenets of endometriosis that we know, which is that it's progesterone resistant, it loves estrogen, it makes its own estrogen. So, um, I think those are kind of things I, I focus on. Um, it's really hard to make them go away- Mm-hmm

because even with medicine, we can't really make them go away. Um- I'll speak to this. We do have a couple of [00:21:00] studies that tell you, you know, size matters with endometrioma. So if you have a very small endometrioma, um, potentially it's worthwhile monitoring, potentially it's worthwhile doing medical suppression if, if, uh, a patient can tolerate it.

Um, I think it also matters sort of at what age they're at, what their immediate fertility goals are. I think that's where that individualized medicine comes in. Um, but I think unfortunately for endometrios- endometrioma patients, hormonal management is huge. 

Dr. Brighten: Yeah, and you know, to your point with DIM, uh, so I love DIM, sulforaphane, and calcium D-glucarate for managing the metabolism of estrogen and making sure we're moving it out.

I am not compelled by the research we have to say dysbiosis in the gut, bacteria is causing endometriosis. What I think is actually going on is having that gut dysbiosis, you are higher risk for reconjugation, reactivation of your estrogen. The other thing that's beautiful about DIM is it also affects aromatase.

So when these lesions are ... And for everyone [00:22:00] listening, aromatase takes your testosterone into estrogen. N-acetylcysteine is another one that we've had good research on, showing it's comparable to birth control in terms of its ability to help shrink an endometrioma. My question for you, when you say progestin Progestin, for everyone listening, comes by way of IUDs, birth control.

Progesterone, are you using cyclical progesterone in those situations if a woman's still cycling? Are you doing progestin IUD plus, like, a progesterone, a bioidentical? 

Dr. Amanda Chu: I will do anything that works for a patient. Yeah. Okay, so, I mean, the ideal, and they have sort of looked at this, is unfortunately, like, things that are more natural, micronized progesterone, it's just sometimes it's not strong enough for endometriosis.

This is supporting someone with normal ovarian function sometimes. Mm-hmm. And, and so I use a lot of progesterone maybe in my perimenopausal patients, things like this. But sometimes I almost feel like you need heavy hitters, um, for endometriomas. So, [00:23:00] um, progestins, so synthetic progesterones, I use, uh, Mirena IUDs.

Sometimes I'll pair that, so I'll do something called dual suppression. I'll do Mirena IUDs with, like, maybe a very small dose of norethindrone. Uh, unfortunately in the US we have norethindrone. We have something called Slynd, which is, um, just drospirenone. Uh, I know in Mexico and other places you have Diane-35.

Diane-35 I feel like is actually better, but we can't access it. So actually rarely I've told patients, "Hey, you know, you have family in Mexico. Why don't you go get Diane-35 down there and see if that works better for you?" Mm-hmm. Um, and we do know that actually continuous suppression, uh, is better for recurrence rates.

But again, what will they tolerate? Will they f- how will they feel on that? So I always say the best pill or the best medication is the one that you take. 

Dr. Brighten: Mm-hmm. 

Dr. Amanda Chu: Right? And that makes you feel okay. It makes you feel like you wanna go outside and live your life. And so unfortunately for a lot of patients, that's not the case.

So, um, so yeah, so we'll use it all. Uh, uh, things I have heard other providers use that I'm not a, I'm not a huge fan of, [00:24:00] and I think that that goes a little bit to physician preference, like, I'm not a big fan of things like Nexplanon or Depo. I think it l- leads to a lot of irregular bleeding. The Depo leads to a lot of weight gain.

That's already really challenging for patients, especially if they have concurrent conditions like PCOS. It's just, it's a challenge. Um- Mm-hmm ... women are complicated. Surprise. Um, and, and so I, I think sort of realizing what those medications were designed for. They were designed for contraception. That is what all the studies- 

Dr. Brighten: Mm-hmm

Dr. Amanda Chu: um, you know, are for. And so we're sort of trying to hijack that system and say, "Okay, what do we have? What do we have in front of us, and what can we use for our patients?" 

Dr. Brighten: Outside the US, there's also a subcutaneous injectable called Bonteris. Hmm. I'd like to see research on that. So we know, uh, so f- with endometriosis, there's a higher risk that you are neurodivergent and you have endometriosis.

We know that a lot of those women, so ADHD and autism specifically is where we have the most research Many of those women [00:25:00] report PMDD. As we're coming to understand from the research, we've got neuroinflammation, but we also have maladaptation of the GABA receptors in the brain. And so these are the women that, um, we had the first study just a couple years ago on ADHD and, uh, oral contraceptives.

Lo and behold Five times risk of depression, not surprising to me. I've seen this so many times clinically. These women don't always do well with progestin. They don't do well with oral progesterone necessarily. Yeah. I mean, it's very individualized, and that's where bypassing the liver so you don't get that allopregnanolone spike can be so helpful.

But the subcutaneous, as much as I'm like, people don't like to inject themselves every single day. However, it is something that I'm very curious to see that because it's being used for fertility patients to build up that, um, you know, basically that cushy little home for an embryo to transit to- Yeah ... be able to burrow into there.

So it is something I'm very [00:26:00] curious about to see these other applications and look at, like, the fertility world as well of, like, how do we, y- you know, treat the endometrioma, yes, but prevent recurrence if you have surgery and also prevert, uh, preserve future fertility if that's the goal. 

Dr. Amanda Chu: Yeah, I think those are the things we're always thinking about, right?

And that's why it's so hard. It's ... And I think the fertility goals is one of the hardest. I always tell patients, "I don't know," you know, especially if they're young, "I, I don't know, you know, who you're gonna be in five years. I don't think you know who you're gonna be-" Mm-hmm ... "in five years, what you're gonna want.

I don't know what your future partner is gonna want or not want." And so, uh, it's not so much about predicting these things 100%. It's about giving them choice, letting n- letting them know there are options for them. And so if you can give them back a little bit of autonomy, um, I think that's, at this point, you know, one of the best things that you can offer them.

Dr. Brighten: If someone has an endometrioma, how worried should they be about their fertility? 

Dr. Amanda Chu: Fertility is impacted by so many things. This is just one thing, right? And so [00:27:00] I do ... You know, I think we caution the way that, you know, w- I feel like as providers, we always wanna save patients heartache that we know could come to them down the road.

Um, and so when I have a patient with endometriosis, say they're 25, and I know they have, I don't know, stage two endometriosis, I say, "Okay, don't worry. Um, I'm gonna monitor you. Let's watch." And let's say I'm, you know, "You're 25. I'm gonna treat you like you're 27," you know, with some, obviously some, um, you know, some other things to that.

But just very generically to say, "Okay, so if these are things we wanna try, I have more time to work with you. You know, we're not, we're not panicked. I may send you to a fertility specialist earlier rather than have you wait the full year of just trying, um, if, especially if, you know, you're anxious about that."

So with, you know, maybe with endometriomas, with deep endometriosis, to give us a lot more time, um, because I think that's the thing you can't get back really, you know? And, uh, it's unfortunate 'cause, you know, we use a [00:28:00] lot of numbers in endometriosis and fertility, and if you go to a fertility practice, they're just gonna throw a whole bunch of stats at you, and that's great.

But if you're the 10%, you know, um- And, you know, the 10% that's not getting pregnant, that's really, really upsetting, right? Mm. So how do we try to sort of humanize those numbers? Um, that, that would be my hope to say, "Okay, let's just give ourselves a buffer of time so, um, we can catch ourselves." 

Dr. Brighten: Can someone get pregnant naturally if they have endometriomas?

Dr. Amanda Chu: Yeah, and you can get pregnant if you have endometriosis. Um, what I would say is that we always speak about this sort of natural or, or, you know, normal fecundity, which is the chance that you would conceive, you know, if you're intimate at the right time. Depending on how old you are, that can be 20%, 15%, things like that.

They've basically extrapolated that number out for endometriosis patients to anywhere between 2 to 10%, right? So there is definitely a chance, and if you get pregnant, you'll do what all the gyne- gy- gynecologists tell you to do, which is go get pregnant, right? Um, and so, uh, [00:29:00] there definitely is, and often that's, you know, a very quiescent time for endometriosis for some women.

Um, and, and yeah, so you absolutely can. It's just that at certain, at a certain time point in your life, it may be very challenging to be waiting two to three years to get pregnant, and that, that may really push your family planning. 

Dr. Brighten: Can we put the numbers in perspective w- with the understanding that these are just numbers, but in terms of, like, your chance of getting pregnant without endometriosis, like in your 20s versus if you have endometriosis.

As we know for everyone, once we hit, enter those 30s, that number is going down. 

Dr. Amanda Chu: Yeah, I mean, I, that, I think that's the general, you know, the general numbers I'll use to give somebody perspective, right? So, you know, if every cycle, I would say, you know, say a, a young couple comes to me, and traditionally their chance should be 20% a cycle, right?

And so really you don't trigger an evaluation, an infertility evaluation, until you have tried for 12 cycles [00:30:00] consecutively before they're like, "Hmm, you know, maybe something is wrong." And, you know, they put those there because, you know, at some point, you know, on cycle 11, you know, a healthy couple will likely conceive, and so that's about 90% of couples.

We know if you have endometriosis, those numbers are gonna be lower, right? And so it's hard to 100%, you know, take every patient and do that. But if we're looking at earlier disease, maybe your chance is 8% a cycle, and absolutely that can happen for you. Um, we just know the younger you are, the better, right?

Mm. And those are, that's one thing I can't change, and I, I had a very well-meaning, um- husband sort of make a joke after surgery once, and he was like, "Oh," like, you know, his wife was, you know, in her early 40s, and she, he was like, "Oh, did you make her, you know, 25 aga- her uterus 25 again?" And I was like- Yes ... "Oh, sir.

Oh, sir. Let's talk about this." I 

Dr. Brighten: get so embarrassed for men, but I have to remember that the education system in the United States on health is so bad that I'm like, uh, but at some point as a male adult, you, you have to, like, [00:31:00] learn some stuff on your own. 

Dr. Amanda Chu: Yeah, I 

Dr. Brighten: think, you know- And did you think that was cute to say?

I just don't get it. You 

Dr. Amanda Chu: know, I think he was maybe nervous or something, and I, and I completely get that. He, you know, he said it kind of in this, like, sort of goofy way, and I was like, "Yeah," like, it's tough. You don't, you, you know, you just, you don't know what you don't know. Um, and I have this funny phrase I say to so many of my patients when I explain to them why I get an MRI and why I get it at a specific, you know, MRI center, even if they've already had an MRI or I get them reread, and I was just like, "You can't see what the mind doesn't know," right?

Mm-hmm. So if you have radiologists that have never read deep endometriosis, well, you're never gonna find that on a scan. Okay, surprise, right? And so I always think this, this field, you know, I, I feel like I fell into this, but it has brought on so many more questions. Like, this is why you have specialists in so many different fields.

I am not the expert on so many other things. Um, and I'm still not the expert. I'm still learning, um, and I think that's a really important part. We're learning about this together as a community. I've changed how [00:32:00] I, uh, do my consults even from, you know, four or five years ago just through patients, right?

Um- And it's really disheartening to say that probably 90% of, you know, my education about, uh, about endometriosis came after formal training, after 10 years of formal training. 

Dr. Brighten: Let me ask you, does, uh, do endometriomas themselves harm egg quality, or is it more the risk of the surgery? 

Dr. Amanda Chu: Yeah, and I, I think this goes back and forth, right?

So it's hard to 100% measure egg quality unless you really retrieve the eggs, fertilize them, take them all the way down the road, and there's already an attrition rate with that. Um, I think what we talk about is a lot is, so if we think about an endometrioma, you know, de facto, I always say, just think about an ovary.

An ovary, you know, normal measurements of an ovary are up to, you know, one by two by three centimeters, give or take. So when you have a five-centimeter endometrioma in there, y- actually, that endometrioma has actually expanded and compressed the healthy [00:33:00] ovarian tissue to just, like, the periphery, right? So just by the inflammation, almost, like, localized, maybe necrosis or pressure, um, the ovary itself is getting damaged.

And so that, to me, equals not just egg quantity, as we've noticed in the AMH, but egg quality. So even if you pull those eggs, a lot of them won't be good. It won't have, let's say it won't have grown up in the healthiest environment. 

Dr. Brighten: Mm-hmm. 

Dr. Amanda Chu: Um, and I do think that's why after endometrioma surgery, you do see this increase in spontaneous fertility, right?

So you're letting that ovary hopefully recruit a healthy... And you just need one, right? You, a healthy oocyte. 

Dr. Brighten: Well, I want to go into, uh, the surgical aspect of it. Sure. So you just said, like, a five-centimeter endometrioma. So at what point do we need to operate for the health of the ovary? Is there, like, a number of, like, once it's this size, we're no longer monitoring.

If fertility is your goal, we need to excise this. 

Dr. Amanda Chu: So a lot of societies [00:34:00] use four, right? That's a very common number that is thrown around. I think that's maybe, you know, what the cutoff they use for certain, um, maybe certain studies. And so I think that's how we were taught. If endometriomas get to be four centimeters or bigger, we should take them out.

I think, in my opinion, you know, we're also looking at symptoms, right? So symptoms are incredibly important. So I think, you know, you, it's the same as endometriosis in any other area, so we would like to improve quality of life. I think it's challenging to leave any endometriomas there because you know by default they are naturally damaging the ovary anyway.

So I know that we always have this push and pull because those AMH numbers that are looking at your ovarian quantity are, you know, potentially falling, okay? But they're falling anyways, right? Hmm. So I think it's more important to say, "Hey, you know, do I have goals this moment? You know, what, what are my goals now?

Are my fertility goals, like, eight years from now type of thing?" So it'd be, "Hey, let's-" You know, and I think surgical technique is really important. So we talk, [00:35:00] there's different types of technique, but, you know, you just wanna talk to your surgeon and say, you know, "How do you approach an endometrioma? Um, are- is there gonna be any coagulation?

Are you going to take the full cyst out? Are you just gonna drain it?" 'Cause some of them have higher recurrence rates. So if you have surgeons that are really cognizant about that, you know, we don't actually want to hurt your fertility. That's just maybe surprising to for some fertility docs, but we actually wanna help your fertility as well.

Um, sometimes I'll then say, you know, either before or after, maybe depending on the size, "Maybe let's remove it. Let's let the ovaries heal for a moment, and maybe, you know, you're young, and let's, let's talk about egg freezing. Let's talk about that for now because maybe one cycle is gonna save you, you know, four cycles many, many years from now," right?

So I think all of those are really important, and it just kinda depends on, you know, what a patient is feeling at that point. So I would say general cutoffs, yes, four, but I ... to me, any endometrioma, even if you're two centimeters, means something to me. I would still offer somebody excision, um, [00:36:00] and, you know, and, and suppression and, and, and management.

Dr. Brighten: What's the ideal surgical technique to remove an endometrioma if you wanna preserve your fertility, and what should you always avoid? 

Dr. Amanda Chu: I think you should really avoid just drainage, right? Drainage is really, they just- sort of pop the, pop the cyst, let that chocolate fluid, you know, flow out, uh, and then the cyst wall sometimes just re-heals and they fill back up very quickly.

So that recurrence rate is very, very high. So if you're gonna have surgery, and surgery done correctly, we usually re- recommend a cystectomy, so just to remove the cyst wall, to repair it with really good surgical technique. So usually we're suturing the ovary. Um, there are s- you know, maybe a few surgeons that would just leave that cyst wall open.

So I'd say no, it's really important to repair that ovary. Um, and yeah, I would just say meticulous technique elsewhere, so excision in other areas to remove anything, especially around the tubes, ovaries, adnexa, ovarian fossas. Ov- ovarian fossa is an area just under the ovary that's very common for endometriosis to hide as well.

So when [00:37:00] you're doing that surgery, you know, I've had actually some patients come to me because just the endometrioma was removed, and then they didn't have any other excision, and I'm like, "Well, what about the rest of it?" Um, and so I think s- you know, maybe generalists are doing just the cyst removal, but they're sort of missing the bigger scope of what's happening there.

Mm-hmm. I think those are really important things too. 

Dr. Brighten: Do you think a general OBGYN is the best person to see for an endometrioma excision, or should you be seeing an endometriosis specialist? 

Dr. Amanda Chu: I think at the very least someone who has maybe fellowship training or is more focused in, uh, gynecologic surgery.

So in the US we have a couple of different societies, but AAGL is one of our largest ones. So it's the same. I, you know, you, you don't want me to deliver a baby. You know, I haven't done it in in several years. And so I just think ... And that is complicated in and of itself, right? So you just s- want someone that understands this disease to the best of their ability and can counsel you about that.

Even if they can take out the endometrioma, can they explain to [00:38:00] you all of the, um, issues that you might encounter along the way? You know, are they thinking about you now? Are they thinking about you ... Are they thinking about that potentially, you know, increased risk of ovary cancer for you, you know, in the context of your family history, you know?

So I think as endometriosis providers, we are thinking about that. 

Dr. Brighten: Mm-hmm. 

Dr. Amanda Chu: Um, and we maybe have the space to think about that. Um, I think there's probably just too much to cover for a generalist quite honestly, um- And that's not their fault. That's just how, how this was developed. We're primary care of, of, you know, women's health, and that's a lot of things.

Dr. Brighten: I hear all the time from women who say, "I wish my general OBGYN understood endometriosis. I wish they understood perimenopause. I wish they understood menopause. I wish they understood postpartum." Which I'm like, "They should." There is a laundry list- Yeah ... of women's health issues that women feel like their general OBGYN just does not understand, and I think they're right.

And I think the problem is, is that we have taken [00:39:00] all of women's medicine and stuck it to the OBGYN and said, "Fe- you should be a master of all of this." It, it is seriously just such a blind spot in medicine to completely view women as just the same, no matter what. 

Dr. Amanda Chu: Yeah, and you know, I, I think there are differing opinions here.

You know, there have been some that have suggested it's just too much to cover, so what we should do is we should split up, you know, um, you know, obstetrics, and we should split gynecology because they're almost so different, right? You have urogynecology, you have GYN oncology, you have, you know, endocrinology, you know, you have, uh, advanced family planning, things like this.

And so the challenge here is that, you know, if you have endometriosis, you have endometriosis throughout your whole life- Mm-hmm ... and you get pregnant during that period of time, and actually, you know, you may have something like adenomyosis, and you may get pregnant during that time. And so, um, to have some of that fundamental understanding of what your patient is experiencing, it is challenging.

Um, maybe there's some sort of combined track. It's just there's so much to learn and to do. Um- Mm-hmm ... [00:40:00] I think that is, is one of the biggest challenges we still struggle with, you know, and that's why a lot of, uh, providers then go on to fellowship because they feel like, "Okay, well, training wasn't fully adequate."

And that's, that's tough to hear. You already spent all this time training, then you do extra training, and then for me to come out of training and feel like, "What did I just learn there that's helpful for me now?" Yeah. Um, I have to say this, and, and you know, I, I'll, you know, sort of put myself on last is to say that I was taught to ablate.

Um, and so I know myself, and I know ... And I really respect the people that I train with. You know, they do excellent myomectomies, and they're really, you know, great robotic sur- And they're good people. They, I don't think they ever meant to hurt anyone. I think that's sort of just what you were taught.

You're in this place, and you think the system is, is great, and this is evidence-based medicine, and you're getting taught certain things. And then to come out and have that sort of paradigm shifted and have people that you looked at, at as, you know, mentors and be like, you [00:41:00] know, to have to question that I think was really challenging as a young surgeon.

And to be like, you know, we had someone, um, I had one of my attendings sort of say, oh, like, "Oh, like, people don't need HRT." Um- I was like, "Oh," like, and, you know, we would do oophorectomies, meaning we would take ovaries, and that was just like, "Oh, you know, they'll be fine." Uh, that is something I heard in advanced training, and, uh, some, myself and some of my old co-fellows still talk about that.

We're like, "I can't believe we, we did that." Mm-hmm. We didn't know. Like, we... Not that we didn't know, we just sort of, we would, you know, we would ask about it, and that was the response that we sort of got. And that, you know, so, so just to caveat to say that, you know, most providers don't go into this because they wanna hurt you, because they wanna dismiss you.

It's that the training system is really inadequate. Women are complicated. The system, you know, forces you to have 15-minute visits. How can you possibly encompass all of the things you need to encompass? So I, I know a lot of my, [00:42:00] uh, colleagues have been like, "Okay, this is the one problem we can talk about today," so we, you know, what is that?

And unfortunately, if you need to, we need to be booking another visit for this because we can't be talking about, you know, X, Y, and Z today. 

Dr. Brighten: Which is super frustrating as a patient who's- Yes ... waited six months to get in. 

Dr. Amanda Chu: Yes, and is an hour late and- 

Dr. Brighten: Yeah. Yeah. It's, I mean, it's su- it's such a hard system, and I admire that you, you saw the contradictions, and rather than doubling down on the dogma, you were like, "Okay, I have to do something different."

I wanna ask you, 'cause you brought up the cancer risk. What is the cancer risk of an endometrioma? 

Dr. Amanda Chu: Okay, good question. Um, so actually in 2024, there was this really big paper in JAMA that, um, made sort of headlines in endometriosis care, and they looked, and the reason it did that was because it was one of the first studies that really subdivided types of endometriosis, and so we're thinking, uh, peritoneal superficial endometriosis versus [00:43:00] deep endometriosis and endometrioma patients, and it looked at their ovarian cancer risk.

So we've long known that endometriosis, particularly endometrioma patients have a higher risk of certain types of ovary cancer. And so this one really characterized and said, yes, there's a risk across all of these, uh, all of these demographics, but the highest risk is in endometrioma patients and deep infiltrative endometriosis patients.

And so, um, there's, you know, stats are a funny thing, which is that it really said, you know, really sort of scary things like nine times the risk, you know, 12 times the risk, 14 times the risk, um, of the overall general population. And so the average risk of ovary cancer is about one in 70. 

Dr. Brighten: Mm-hmm. 

Dr. Amanda Chu: Um, when we're looking at absolute risk, which is slightly different, that kind of doubles that.

So that means maybe two and a half, you know, in 70. So it's not numbers that we're incredibly comfortable with, which we like. But to give you perspective, you know, breast cancer is one in [00:44:00] eight, right? So ovary cancer is just particularly tricky because it doesn't have a lot of easy precursors, right? So for cervical cancer, we do Pap smears.

For endometri-- uh, for uterine cancer, we do endometrial biopsies. For ovary cancer, you know, what are ... How do we screen? There's really not great screening. And so knowing these things, um, you know, hopefully better guidelines will come out. But sometimes what I talk to patients about is, you know, potentially hormonal suppression 'cause that can reduce your risk.

But, um, if they're coming for some other surgery, you know, they're later in their life, they're done with childbearing, I'll offer things like, um, prophylactic salpingectomies, which is to remove the tubes. We know that that can reduce your risk by about 60% of related endometriosis-related ovary cancer. So just thinking about different options for patients to say, "Hey, you know, if you're not quite ready, we're not, we're not 55, we, you know, you wanna keep your ovaries," okay, we can do something interval, like in the meantime.

Dr. Brighten: Mm-hmm. 

Dr. Amanda Chu: You know, if you need a re-excision or you need something else, those, that can be very helpful. I think [00:45:00] that would, that really helps solidify, um, the risk and sort of that risk profile and to kind of say they, they bear different risks to patients, right? I, I think one big thing that I always say to patients is that we treat endometriosis like every endometriosis patient like they're the same, okay?

And in some ways, that's great. You know, we want equality. Um, but people are so different, and we insert in the way that you subclassify and subtype cancer, at some point, we're going to be hopefully subtyping end-endometriosis. You have endometriosis type A1 or, you know, whatnot. Hopefully, we'll get better terminology than that.

But, and you will be, you know- You know, more responsive to this type of progesterone and this is hopefully, you know, a little bit more about your clinical course. You know, we have a cohort, which I'm sure is its own podcast that, you know, we're seeing pop up with, you know, mast cell activation and EDS and POTS, and they kind of come in this cohort.

So, you know, I'm sure that's gonna be a subtype, you know. And you'll have more clinical information because we'll be able to [00:46:00] group those patients together rather than throwing them all into these studies and just kind of having this- Mm ... you know, mishmash of information come out. 

Dr. Brighten: Yeah. And to your point, with the endometriomas and the risk of ovarian cancer, the other thing that's really important to know is that from the data we currently have, is that if you're given estrogen hormone therapy alone, that's gonna increase your risk of ovarian cancer.

And this is so important because the generation right now who's in perimenopause and menopause is the generation who has received hysterectomies because- Mm-hmm ... ACOG said that it was a treatment for endometriosis. When you don't have a uterus and your doctor says, "Oh, you don't need progesterone," but you've retained your ovaries and you have a history of endometriomas, they are increasing your risk for cancer, and that's everyone's fear with HRT is cancer risk.

When we put that estrogen with progesterone, they found no risk. Yes. We talked about hormonal suppression, which birth control is known to lower the risk of ovarian [00:47:00] cancer. What other things can women do in their, like, nutrition, lifestyle to help lower the risk of ovarian cancer? 

Dr. Amanda Chu: I think the biggest one, too, is smoking.

So smoking has a documented risk of ovary cancer, and I would, I would hazard to say it doesn't offer a lot of benefits. The things that really impact ovary cancer tend to be how many times you cycle. So some of the things that you can control and you can't control, right? So sort of the earlier you start to have periods, the later you stop having periods, whether you're pregnant or not pregnant, pregnancy actually helps reduce the risk.

I guess that pregnancy is modifiable, but I wouldn't really consider it modifiable. It wouldn't be something you would do just to, uh, avoid ovary cancer. You know, I think in, I'm, this one I'm not the expert here, I think we're talking a lot more about the environment and, you know, factors that are influencing our endocrine system, and are they carcinogenic, and things like this.

So I would speak to that whole sort of segment and just to say, like, [00:48:00] yeah, we, I mean, we don't know, right? We're growing up in an environment that was incredibly different than 50 years ago. Mm-hmm. And we are seeing a lot of cancer. Um, here are the things that we can do. These are things we know that have documented risk.

Um, but so much of medicine has been done based ... You know, if you just stay within the textbook in endometriosis, I don't think it's gonna take you very far. 

Dr. Brighten: Yeah. 

Dr. Amanda Chu: Um, and so I think putting that together, just like you were saying earlier with dysbiosis, it's not the actual bacteria, it's why are, why are those bacteria, you know, being allowed to proliferate?

'Cause there's immune dysfunction, right? You- Mm-hmm ... you know, you do have documented changes in your immune system, right? And so that we know, right? Why, you know, when we used to think that it was 100% retrograde theory, well, then why doesn't everyone have endometriosis? 

Dr. Brighten: Yeah. 

Dr. Amanda Chu: We pretty much all have retrograde menstruation, right?

So it, some of it didn't quite really add up. 

Dr. Brighten: And I would add to what you're saying, I think everything you said was great, is that exercise, regular physical activity- Yes ... lowers cancer risk across the board. And then the [00:49:00] other thing is six to nine servings of plants a day. So we're looking at vegetables and fruits, getting a variety and getting those polyphenols.

And that's, I mean, if you wanna affect your gut health and shift what's happening in your microbiome, six to nine plants a day is gonna help with that. And the great thing about cancer is that it's not one thing, it's multifactorial. And we don't even have to address all the things, we have to address the big things with it.

So I don't want anyone freaking out. Just take a 

Dr. Amanda Chu: breath. No, yeah. It's, it's all the things, right? And I think that leads, just what you're saying, it, it leads to mental wellbeing, it leads to, you know, decreased estrogen pr- you know, you, you create estrogen in your adipose tissue, right? So in general, you know, exercise is never gonna be a bad thing.

Mm-hmm. Like, it is really, really important. Uh, muscle mass is really, really important. Um, I find a lot of patients tell me, you know, this low sort of intensity, moderate intensity activity is [00:50:00] where they find the best and most positive relief. That might not be for everyone. Mm-hmm. Maybe like your HIIT exercises and things like that.

But, um, but yeah, just, just from what they say, right? It, you're, you're learning, "Oh, this is what my body can tolerate." Um, and you know, it's hard. I feel like it's, it's a full-time job being an- Yeah ... endometriosis patient. 

Dr. Brighten: No, it, I love that you say that because it is the, like, such a time-consuming disease- Yeah

and it is so expensive. And these two things are absolutely so real. Well, thank you so much for taking the time to sit down with us today. I really appreciated this conversation. 

Dr. Amanda Chu: Yeah, absolutely. Um, thank you so much. Thank you so much for having me.