Endometriomas and Endometriosis: What Every Woman Needs to Know About Diagnosis, Surgery, and Self-Advocacy with Dr. Amanda Chu

0:00Dr. Amanda Chu:Ruptured endometrioma or draining it, can that seed more endometriosis lesions in the pelvis?

0:06Dr. Jolene Brighten:At certain sizes they can leak and they can leak all of that inflammatory fluid all over the pelvis. It is inflammatory glue and it starts to glue things. That's what actually makes the surgery challenging. Dr.

0:16Dr. Amanda Chu:Amanda Chu is a leading endometriosis surgeon and longtime advocate through the Endometriosis Foundation of America.

0:23Dr. Jolene Brighten:On a mission to break the stigma, challenge misinformation, and help women get the care they deserve. Stage 4 endometriosis didn't just sprout up yesterday. It started throughout your whole life. A large percentage of the patients who are young, who are adolescents, who are in their 20s that get surgery, they have endometriosis. And they have it to the degree where it's impacting their life.

0:41Dr. Amanda Chu:How often does ovarian torsion occur with endometriomas? Honestly, most of the endometriomas are ruptured endometrioma or draining it. Can that seed more endometriosis lesions in the pelvis?

0:53Dr. Jolene Brighten:We talk a lot that at certain sizes they can leak and they can leak all of that inflammatory fluid all over the cul-de-sac, all over the pelvis. I always feel like that is like, you know, not surgical glue, but it is inflammatory glue. And it starts to glue things together, right? That's destruction of surgical planes, spaces. That's what actually makes the surgery challenging. When you have unruptured endometriomas, you can actually tell like when you open endometriomas, younger endometriomas that have been there for a shorter time. The fluid consistency isn't as thick. The cyst wall isn't as fibrotically scarred into the ovary.

1:30Dr. Jolene Brighten:So just knowing these physical characteristics, it makes it so hard for someone like myself to leave something in there that I know at some point may cause a problem.

1:39Dr. Amanda Chu:It's very common for endometriomas to land people into the ER. When it comes to going into the ER, what should an ideal scenario look like for a woman getting assessed for an endometrioma?

1:51Dr. Jolene Brighten:I mean, unfortunately, it's almost never ideal when you are a woman going to the emergency room for pain. They are thinking pelvic inflammatory disorder, appendicitis, you know, if you're pregnant or not. And, you know, I mean, maybe an anexal mass or torsion. They're thinking about the twisting or a ruptured cyst, right? And so they're thinking, you know, these are my emergencies. They kind of don't really view endometriomas as emergencies still. I think sometimes they're thinking more endometrioma in the context of could they cause something like a torsion? Could they cause something else? But the endometrioma in and of itself is never really viewed as an emergency, even though the symptoms you are feeling, I think, have brought you to the emergency room.

2:37Dr. Jolene Brighten:I think what we always sort of forget for patients, and I always remind myself, nobody wants to see you, okay? I mean, I think I'm a nice person, but nobody really wants to come see me. They're seeing me because they're in pain. They're seeing me because they have problems, right? Doubly so, triply so if you're going to the emergency room. So I would say it is always going to be hard because you are probably not going to have an advocate with you. I would hopefully bring someone with you to the emergency room that can help you vocalize and be your advocate there to be like, hey, no, I really think something is wrong.

3:12Dr. Jolene Brighten:The issue here is that you probably do not want to be getting your surgery or any intervention in the emergency room. You want to come away, you know, hopefully with resources, having your pain controlled with, you know, any imaging if they're able to do it for you. MRIs are excellent. They sometimes won't do that for you in the emergency room. But just to say, you know, that is not ever an ideal place and it would be very, very rare for you to get the best care there. make sure none of those other things are happening that you would need immediate care for like I said like the ovarian torsion but I would say with whatever information you have you know that something is wrong you didn't bring yourself to the emergency room because everything was great that day so if they have ruled out scary things like appendicitis then you can say okay you can take that diagnosis and be like okay I have you know well enough information or well enough, you know, symptoms and issues that I should be seeking appropriate care now.

4:11It's very interesting for some reason people, you know, the psychology of endo I found so

4:16Dr. Jolene Brighten:interesting is, you know, when do you realize that your symptoms are abnormal? When do you seek care? When do you feel like you deserve care? It's so interesting. And so I would just basically urge anyone, if you're going to the emergency room and they are not finding anything, you should really be considering endometriosis, right? To me, that's a big problem.

4:36Dr. Amanda Chu:But if you do go to the emergency room, they happen to do ultrasound or MRI, any kind of imaging, that is good data. That was like, even if they just say, go take some Tylenol, get the imaging because you can take that elsewhere. I'm curious, how often does ovarian torsion occur with endometriomas? Are we looking more at like a size of an endometrioma that puts you at risk?

4:59Dr. Jolene Brighten:Yeah, honestly, pretty rarely. I would say because most of the endometriomas are associated with scarring. So scarred ovaries don't twist that much. So I mean, they can happen, but I see them much less frequently than with any other type of simple cysts because those you have, you need mobility.

5:15Dr. Amanda Chu:This is endometriosis is surviving, right? Because I need my little hormone factories to keep me here. Yeah, it's not going to try to cut you off. It's going to want to keep everything flowing there. So I'm going to preface this next question that I was severe period pain for years. finally I'm like get on the pill and I think this is going to be my savior and I went into the emergency room over and over again for pain and it wasn't until almost 25 years later that I remember because everyone listening I was like 17 when this started they're like chocolate cyst is rupturing chocolate cyst is rupturing nobody used endometrioma no one said endometriosis and all my time on the pill, I still had rupturing of cysts.

5:59Dr. Amanda Chu:What are other things women can do to prevent trips to the emergency room?

6:04Dr. Jolene Brighten:That one is tough because, you know, just like, you know, contraception, it's just not 100 % perfect. I don't think we have anything that's 100 % perfect unless you remove ovaries, which is not something we're ever going to do.

6:17Dr. Amanda Chu:A 17-year-old. 0 % perfect at 17.

6:20Dr. Jolene Brighten:Okay, that is 0%, right? And so the things you can do are, I always tell a lot of my patients to have like a little go pack or something with them because if they're out, you never know when you might have a flare or you might have something happen to you. So whether that is, you know, a portable heating pad, whether that's a portable TENS unit, I know, you know, patients are using like little red light therapy machines. Some of them are all combined into one. You can have some anti-inflammatories. I use a lot of muscle relaxers. I do things to try to prevent you from ending up there because that is, again, like we said, not the place that you really want to go to seek probably the treatment that you need at the time.

7:03Dr. Jolene Brighten:So I think those are the best ways to prevent sort of unnecessary ER visits. Unfortunately, I've had a lot of patients just tell me, well, I just don't go anymore because it doesn't help me.

7:12Dr. Amanda Chu:Yeah.

7:14Dr. Jolene Brighten:And I think that that's that's that stems from experience.

7:17Dr. Amanda Chu:Right.

7:18Dr. Jolene Brighten:So they wait a long time. They get the same ultrasound. They have the same interaction. And if anything, at some point, it does more harm than it does good just from a, you know, psychological perspective, especially when you can't see it. So, again, we're talking about endometriomas, which you can see, but for every other patient, if they can't see it.

7:37Dr. Amanda Chu:I want to ask you, you know, somebody going to the emergency room, why is it the ER doctor never says this could possibly be endometriosis? You should meet with a specialist. You should take this to your gynecologist. I want people to understand what is going on in their minds and that their doctor isn't necessarily just being a bad doctor here. They are actually doing their job.

8:03Dr. Jolene Brighten:I think two big things. One is the emergency room is like we want to keep you alive, right? Are you having a STEMI? Are you having a heart attack? Are you having a stroke? That's sort of like, you know, how their mind is structured and how they were trained. And I think we've spent a long time talking about, unfortunately, the deficiencies within OBGYN training. Well, these are emergency room physicians. Think about their training in endometriosis. So unfortunately, so many of our patients get labeled as pain seeking. I'm hoping again now the narrative is shifting and they're starting to understand that if somebody is coming back repetitively to the emergency room, they should be questioning what that is.

8:39Dr. Jolene Brighten:Right. Especially if they're never finding any pathology. Because, again, I think, too, you know, you get so into your own space and the narrative you think that, you know, you want to see. But this is not normal. They don't want to see you either. Right. And so I think those are the big things here is that they are their focus is slightly different. It's not on your psychosocial well-being. It's not on your quality of life. It's not on your fertility at this moment.

9:05Dr. Amanda Chu:And I would also add, you know, I think it's really easy to internalize these messages of medicine and they'll say like you're drug seeking, you're being dramatic, you want attention. There are objective findings. Your blood pressure changes. You're sweating. You know, we have objective findings. your respiratory rates are up that show that you are truly in pain and distress. And when your doctor says you're probably just drug seeking, it's probably something else. That's a bias. That's not reality.

9:30Dr. Jolene Brighten:I mean, I think if you have an endometrioma, you should at least get a consult, right? Consult does not always mean surgery. It just means understanding what that endometrioma can do and is currently doing and to understand all of your options, right? Just like the things we talked about and whether you would prefer to take a non-surgical route at this moment, I think more information always helps. Like I said before, to me, an endometrioma is tip of the iceberg. It means so much more for you and has the potential. And for someone to spend the time and to ask about your fertility goals, I think that that is a gift that we should try to give to more young patients found with endometriomas and told just to monitor or it's not a big deal.

10:11Dr. Jolene Brighten:We'll deal with it later because I've seen that to be so damaging in so many situations.

10:16Dr. Amanda Chu:We talked about, you know, addressing endometriosis sooner. The fact that if your surgeon is draining it or is rupturing, that could lead to the progression, the seeding of endometriosis. ACOG currently is like, you shouldn't be addressing endometriosis via surgery in younger patients. I find it hard to reconcile that as somebody who didn't get diagnosed until their 40s, having stage four D.I.E.M. like acronym is that acronym for a reason. But I look at my surgical video and I often question this over and over rupturing that was happening of these cysts over a decade of time. How much worse did that make my endometriosis and could I have prevented it?

11:03Dr. Amanda Chu:And so what I'm curious from you is that what is your thought on, you know, teenagers, 20-somethings doing surgical intervention for endometriomas?

11:15Dr. Jolene Brighten:I think if it's impacting your quality of life, you should absolutely be offered surgery. I always say it's amazing that we have so many endometriosis advocates. My goal for, you know, Endometriosis Awareness Month is to actually have less advocates, okay, out there. The whole reason you are advocates is because you have suffered, okay? And so the prevention aspect of this is huge. I say stage four endometriosis didn't just sprout up yesterday. It started, you know, throughout this, throughout your whole life, right? And so, you know, you went from stage one to stage two to stage three to stage four.

11:49Dr. Jolene Brighten:So really stage four endometriosis is a failure of our system. If you were talking about it back then, right, it has been linked to absenteeism in school. you know, a large percentage of the patients who are young, who are adolescents, who are in their 20s that get surgery, they have endometriosis, right? And they have it to the degree where it's impacting their life. They're skipping school, they're skipping sports. Actually, a 20-year-old is the exact population. They have a million other things they want to be doing. And I, you know, I'm in New York City, so there's a lot of things they should be doing and would want to be doing other, like I said, then seeking care, going to emergency rooms, seeing gynecologists.

12:30Dr. Jolene Brighten:So that should be an absolute red flag for providers.

12:33Dr. Amanda Chu:When you say quality of life, what kinds of things are we talking about other than missing school, work, or sports activities that for women listening, they should know this isn't normal and you deserve better?

12:46Dr. Jolene Brighten:I mean, I think it also impacts their careers, right? Sometimes it impacts what jobs they think they can take. The loss to the workforce is incredible. You know, they estimate, I don't know, however many, you know, billions of dollars lost secondary to endometriosis and chronic pain. So it's not just a loss to their personal lives, which it is, it's a loss to society. It puts stressors, you know, with your family, with partners. It's very hard for partners to understand, especially when they're young, right? So I think it can impact every part of a person. And we talk a lot about things like fatigue, anxiety, depression, brain fog.

13:26Dr. Jolene Brighten:It really extends well beyond physically, the body, but also mentally.

13:34Dr. Amanda Chu:When I was asking people to send questions about endometriosis in advance of Endometriosis Awareness Month, and I had my team put together the clusters of the question. One of the biggest questions that I didn't expect and was shocking to me is patients asked, what can we do to end the misinformation that is primarily spread by doctors?