What Is Endometriosis? 4 Surgeons Explain the Symptoms, Misdiagnosis, and Whole-Body Impact

Dr. Brighten: [00:00:00] It takes seven to 10 years on average to get a diagnosis of endometriosis. Why is this not framed as a 

Dr. Victoria Vargas: medical failure? 

Dr. Ana Sierra: The lie is that the only way to tell if you have endometriosis is through surgery. They tell patients that the imaging have no benefits because they don't know how to interpret it.

Dr. Cindy Mosbreer: You're still gonna have pain if we remove your endo and you keep an adeno myotic uterus. 

Dr. Victoria Vargas: It's so dangerous that this is thought of as a pelvic disease. This is a systemic disease that triggers further disease. It's not a pelvic or uterine disease. Disease of the body impact your entire body and it's gonna trigger further disease.

Dr. Brighten: Anna, what are three to five things women should start tracking immediately if she suspects endometriosis? 

Dr. Ana Sierra: Oh, I will say the five Ds. I mean, first, the pain during the ral cycle, the pain or the symptoms while trying to pee the pain or symptoms, trying to poop the pain, uh, while doing [00:01:00] intercourse. And the last one, uh.

Difficulty to get pregnant. 

Dr. Brighten: Okay, Vicki, what are some small changes that can help women feel more stable while they're waiting for real care? 

Dr. Victoria Vargas: Honestly, like I'm a big believer, and I don't wanna make this sound like I'm turning this back on the patient, but I feel like your lifestyle is so important. I feel like anything that soothe is soothes your central nervous system like meditation, acupuncture, any way that you can stimulate your vago vagus nerve, um, naturally, um, making sure you're sleeping well.

Like a, a diet that's really plant-based. Now, I'm not saying vegan, but just highly plant-based. Um, lifestyle really I think is important. Um, especially for patients prone to inflammation because your lifestyle can worsen the inflammatory response from your endometriosis. So that's what I would say is treat your body like a temple.

Dr. Brighten: And I wanna say I don't feel like that's turning it on the patient. It's to say, here are the things that are within your control that you have power [00:02:00] over. And I would say it is so important to have that dialed in before surgery because your outcomes are going to be better. The healing is going to be easier and life is going to be easier afterwards if, if you've done the work ahead of time, if possible.

'cause the reality is, is that sometimes you're in so much pain that like you gotta microwave a meal or you're ordering pizza 'cause like. You cannot stand in the kitchen. And so, you know, with the, you know, the people who are listening, just doing the best you can and we will link to resources that can help you.

Uh, with this. Shawnee, I wanna ask you, if someone is told their imaging is normal, but their symptoms are, what would you recommend they do next? If their doctors just spinning the wheels, not going anywhere with them. 

Dr. Shanti Mulling: I would, so what I would do is I like to do a very complete history and exam assessment to make sure they don't have myofascial pain that we need to address.

It could be physical therapy, acupuncture, even [00:03:00] massage there. There can be trigger points in the ileo SOAs, which is a big hip flexor that's on the front of our, our body that can mimic pelvic, can reproduce pelvic pain significantly. So if their imaging is negative and they're not quite ready for surgery, what are these other things?

So myofascial pain, neuropathic pain. Um, is there anything else going on with their gut health? Have they done other tests for their gut? Do they have intestinal permeability? Do they have small intestinal bowel bacterial overgrowth? Um. Uh, do they have interstitial cystitis? Are some of their bladder symptoms contributing to their, their pelvic pain?

So really looking outside the box of just endometriosis. Some of those things go hand in hand with endometriosis and some of them turn out to be the main source of pain, um, vulvodynia vest. So the list is, is pretty big of other things I would look at in, in helping someone sort out their pain. [00:04:00] 

Dr. Brighten: Cindy, if someone has the diagnosis of endometriosis, what are other co-occurring conditions that like to ride along with it that they should be aware of?

Dr. Cindy Mosbreer: I would say, uh, probably 90% of our patients have pelvic floor dysfunction. Um. What goes along with that is interstitial cystitis, which is the sense that you have to pee frequently pain with a full bladder in the absence of an infection. I would say probably in two thirds of our patients, they have some degree of urinary symptoms.

The pelvic floor dysfunction also causes constipation. When they're having pain, their pelvic floor gets into spasm and they get constipated. Then when you get your period, the uterus releases prostaglandins, prostaglandins stimulate the colon to contract and cause diarrhea. 

Dr. Brighten: We jumped right into this conversation, but I wanna let everyone know who they're listening to today.

So this is a Dr. Brighton Show. I'm Dr. Jolene Brighton. I'm board certified in [00:05:00] naturopathic endocrinology, but I think in this conversation, more importantly, I'm an endometriosis and adenomyosis patient who has also suffered secondary infertility to this disease. Dr. Ana, introduce yourself to the listeners please.

Dr. Ana Sierra: Hi, I'm Dr. Ana Sierra. I'm an end endometriosis surgeon and I have a neurobiology training. 

Dr. Victoria Vargas: I'm Victoria Vargas. I'm an endometriosis surgeon. I'm based in DC and I work at a practice called Washington Endometriosis and Complex Surgery. You had my partner as your guest, Dr. Melissa McHale. 

Dr. Brighten: Oh, stop. 

Dr. Victoria Vargas: I love. 

Dr. Brighten: We will link to, uh, Dr.

Melissa McHale's episode as part of this as well. Um, but yes, I didn't know that. I'm very excited about that. Ashanti, please introduce yourself. 

Dr. Victoria Vargas: Hello, I am Shanti Mulling and I have been practicing. I graduated medical school over 30 years ago and I've been practicing over 25 years, uh, and only really in the last dozen years, focusing exclusively on [00:06:00] pelvic pain and endometriosis.

I practice in Portland, Oregon at Northwest Endometriosis and Pelvic Surgery. 

Dr. Cindy Mosbreer: Hi, I am Cindy Moss Bricker and um, I'm from Gig Harbor, Washington. My practice is Pacific Endometriosis and Pelvic Surgery, and I trained with Dr. David Redwine. I spent two years with him from 2006 until 2008, and it is kind of scary to think that I, in a few months, it'll be 20 years that I have pretty much had a practice completely dedicated to endometriosis with a little bit of urogynecology thrown in.

Dr. Brighten: Amazing. Well, it is an honor to have you all here with us today. For the listeners, we're gonna be doing a four part series to this episode. So we are going to start here today on. What is endometriosis? Everything you need to know about getting the diagnosis, imaging, and beyond. And we're gonna be moving into episodes, all about surgery, all about [00:07:00] pain, and we will wrap this all up with treatments outside of surgery, talking about hormones, lifestyle, and nutrition.

It takes seven to 10 years on average to get a diagnosis of endometriosis. Cindy, why is this not framed as a medical failure? 

Dr. Cindy Mosbreer: Well, it probably should be. They don't do any after hours cases. Endometriosis is not taught appropriately in medical schools and residencies, and I think the biggest problem is the standard of care.

ACOG pretty much sets the standard of care, and right now it is perfectly acceptable. To give someone birth control pills without a diagnosis of endometriosis, it is perfectly acceptable to do a completely useless surgery called a diagnostic laparoscopy, where you expose someone to the risk of anesthesia, the risk of surgery, and you don't even get a decent answer half the time because most gynecologists [00:08:00] can't identify every single visual manifestation of endo.

And so we are really behind the eight ball as far as what is acceptable in a court of law and what is acceptable to the medical establishment. And so appropriate treatment with excision is not being taught partly because. I believe that that ACOG and a lot of the other, um, big medical organizations are bought and paid for by big pharma.

They want endometriosis to be a disease that is medically managed, that every single general O-B-G-Y-N baby catcher doctor can manage. And they don't want it to be a surgical subspecialty. They don't want to create a subspecialty like GYN oncology or urogynecology to take care of endometriosis. But that's what we really need.

Dr. Brighten: Mm-hmm. Did you [00:09:00] wanna add something? Shante? 

Dr. Shanti Mulling: I'd love to add something. So I, so why don't we treat this as a medical failure? And I think to, to think of something as a medical failure, you have to consider that it is a failure, right? And I think in, in our medical establishment, we don't consider it important enough to be considered a failure.

Like, it's not like we missed a diagnosis of cancer or we missed someone's cardiac ischemia. Things like cardiac disease, orthopedic disease oncology are considered very important, and pain in women is still not considered important. So we don't consider missing it a failure. It's not important enough to be a failure.

Right. So I think we, we really need to. Do what you're doing, which is to continue to educate, which many other influencing people are, are recognizing, so that [00:10:00] we as a large society begin to recognize that, that it's important enough that missing it is a failure. 

Dr. Brighten: Mm-hmm. In this series, we're gonna have an entire episode dedicated to discussing women's pain and why it is so dismissed and disregarded and disrespected in medicine.

But what I wanna ask you all right now is that if a woman right now starts in this series is listening to this episode and she suspects she might have endometriosis, what is the medical system often getting wrong that she needs to be aware of? And Anna, I'd love to start with you. 

Dr. Ana Sierra: We all know how, um, I know how normalized is menstrual cycle pain.

So I think that is the first thing that it's going to fail a patient. If a patient's come to a doctor and she says, oh, I really have bad pain with my menstrual cycle, the doctor is going to say, well, that's normal. You're going, you're going through your menstrual cycle. You're supposed to be in pain. Or also if she goes to her mother or to any of the [00:11:00] other women, they will have also normalized this.

So it's in between the ways that we are educated, and that's the thing that we have to change. First, we have to change the ways that we are educating our kids and to tell them, this is not normal. You should see our doctor. 

Dr. Brighten: For every woman listening right now is period pain considered normal? 

Dr. Ana Sierra: No. 

Dr. Brighten: Alright, Vicki, what would you add?

Dr. Victoria Vargas: So I would add that a lot of doctors tell young women or young patients who have pain with their periods and they're asking, they're seeking answers from maybe multiple physicians, they'll finally get the answer that maybe they should start birth control. And that's the amount of education they get about endometriosis.

They don't even hear that they could possibly have endometriosis, that birth control pills may not be effective for their pain. And that there are sequela that are like, that impact their entire body of endometriosis that they need to be aware of and look out for. Um, and even of being on the pill that they need to look out for.

Like [00:12:00] hormonally mediated vestibular demia when you're starting the pill so young after menarchy and you barely have any hormonal exposure and you're suppressing your hormones at such a young age. You know, there's long term sequela of that. So I think it's important for patients to have. An education about endometriosis and how it can impact them on a like total body level.

Dr. Brighten: In your clinical opinion, should birth control be the first line therapy for period pain? 

Dr. Victoria Vargas: I think it's a reasonable first line therapy that can be offered along with a substantial amount of education about things that it can cause like, you know, incomplete development of the, you know, of the labia and the vestibule.

It can also lead to hormonally mediated vestibular demia, which is an overlapping, painful condition that can then lead to further long-term chronic pain that comes along with endometriosis. And I think you just need to have a conversation with the patient about all the potential options they have and so that they [00:13:00] can make the most informed decision that that works best for them.

Dr. Brighten: Do you think we're making a mistake in giving the birth control pill too young and not asking the question what else might be going on? 

Dr. Victoria Vargas: I think we're not discussing things in depth with patients and allowing them to make the best decisions for themselves. So I think if the patient opts for that, I think it's okay, but I think it's not okay not to present them with all of their options, including surgery in some cases.

You know, and, you know, NSAIDs, I mean, there's lots of different things we can do. Lifestyle, there's a lot of things that need to be addressed in the patient. The patient is more than, um, their periods and, uh, they have a whole body to take care of. 

Dr. Ana Sierra: Can I add something to this? Because not, it's not only about the, uh, if I present, uh, with, uh, to my doctor with pain during my menstrual cycle to think about the first line of treatment as.

Uh, contraceptives, but think [00:14:00] about the diagnosis. 

Dr. Brighten: Yeah. And 

Dr. Ana Sierra: the cause of the pain. Yeah. Because if she has congestive, pelvic, uh, syndrome, she's going to have, I don't know if she has nutcracker and you're gonna give contraceptives to it, you're going to add more into the pain. So I would add that the first line of treatment is to have the first, the first, the diagnosis, correct?

Mm-hmm. And now, then you can try to start. Looking for the best first line treatments. But the first thing that you need to do when you have a patient with chronic pelvic pain is to find the cause. 

Dr. Brighten: You said nut cracker, people are gonna think Christmas. What are we 

Dr. Ana Sierra: talking about there? I'm sorry. Yeah. Uh, we can explain this more, uh, in a little bit, but not cracker is a syndrome.

When you have your mesenteric artery compressing your renal artery, the renal artery is very important because all of the flow from your ovary goes through your gonadal vein into your renal artery. So if your a renal vein, thank you. So if your renal vein has a lot of pressure, the pressure is going backwards into your ovary.

So your're gonna have [00:15:00] chronic pelvic pain that can also be cyclic, but it's not going to solve with uh uh, contraceptives. 

Dr. Brighten: Yeah. 

Dr. Ana Sierra: Yeah, I think 

Dr. Brighten: it's, we're gonna get more into that in the pain episode. Yes. Just for everyone who is watching right now. But Ashanti, I wanna ask you, what should someone who suspects endometriosis be aware of?

What would be the warning of like, look out for this or be aware of this if you go to your medical provider. 

Dr. Shanti Mulling: Excellent. And I'm gonna build on what the others have said because those are super important things that, that Vicki and Ana have already brought up. So to the next thing that I wanna add is I, I think people are told, well, you might have endometriosis if that word even comes up.

Um, you have pain, you need birth control and surgery won't help you or surgery. Once you start surgery, then you have to have multiple surgeries and you should wait until you're ready to have a baby. And so don't, don't do anything now. Take birth control pills and then we can do surgery when you're ready to think about a baby.

[00:16:00] So that, that would be something that. I believe is unhelpful. 

Dr. Brighten: And why is that unhelpful? I think it's important because this is exactly what doctors say. Yeah. And it's a, it's an algorithm that's unspoken, but very much what your reproductive goals are, dictate the kind of care you get. And it is constantly reducing women to their reproductive capacity rather than their quality of life or understanding that this is an entire being who deserves to live their full life, regardless if baby is on the agenda or not.

Dr. Victoria Vargas: So I, I'm going to then answer your question, but it also, it's answering another question later on, but. I, I may be an outlier in that I think that teenagers deserve surgery as part of their diagnostic workup. If nothing else is revealed in exam history and imaging, if they can tolerate that at their age, and so I, I really believe that it's reasonable to operate on young, very young people who have debilitating pelvic pain and that it [00:17:00] can be transformative.

Mm-hmm. I think people discount the impact that pain has on your, on your life and all of the comorbidities that develop from chronic pain, and that we have an opportunity in our young patients to intervene surgically for some of them when it, when it's indicated and we miss it because we don't even offer it to them.

Dr. Shanti Mulling: Exactly. And, and so in a teen, they're in the formative years, I have teenagers who are homeschooled because they can't go to school. They, they, if they go to school, they sometimes use a wheelchair and it is. Incredibly transformative to give them the gift of excision surgery, but that is really going against acog.

Dr. Brighten: Yeah. 

Dr. Shanti Mulling: ACOG says, don't operate on teams. 

Dr. Brighten: Well, I'm not a fan of acog, so ACOG can suck it. 'cause I feel like they really hate endometriosis women. So we're, we're gonna get going on acog and I wanna get into this more in our, um, our surgical episode that's up and coming, but I want to also make sure that we get Cindy's input [00:18:00] here on what should endometriosis patients be aware of that most doctors are getting wrong.

Dr. Cindy Mosbreer: If you think about what is, what is happening neurodevelopmentally in teenagers, their brain is still forming and the pathways in their brain are. Becoming cemented, but they're not there yet. They're, the neuroplasticity in teenagers is so much greater than it is later on in life. And if you think about how central sensitization happens, how chronic pain increases the amount of traffic in your thalamus, in, in, in all the pain processing, uh, centers.

And I think if you let teenagers go too long with out of control pain, they are much more likely to develop central sensitization that that is way harder to reverse later on in life. 

Dr. Victoria Vargas: Can I add to that too? [00:19:00] Because honestly, going back to what you said earlier about pain in women not being recognized as important and therefore we're not recognizing our delaying diagnosis as a medical failure, I think these teen patients in pain are the most vulnerable endometriosis patients and I think we are failing them first and foremost, honestly, with our current standard of care, 

Dr. Brighten: I was the teen 10 years on birth control, uh, gastritis, chronic gastritis from all the nz use Miss School seven days, uh, out of every single month.

And I never was told, Hey, we might need to investigate this. And when I came off the pill and it was just as bad as it was before, my doctor was like, you should get back on the pill. And I'm like, I can't keep doing chronic depression. Like I can't live like this anymore. So I appreciate you bringing this up because I think, you know, there's gonna be moms who hear this, this helps their teens.

But I think like so much more, there's gonna be the [00:20:00] 30, the 40, the 50-year-old plus woman who hears this and is like finally my teenage self is actually validated for what I went through. And I think that's a really important message to hear. Did you have something else you wanted to add, Cindy? 

Dr. Cindy Mosbreer: Well, one more thing on this topic.

I don't think it's wrong to give. Teenagers birth control to say, let's see how you do on this, if you tolerate it and if it helps your period. And if you don't have side effects, then great. Let's see how long this will work. Because probably at some point in time your disease will outgrow the suppression of the birth control and it's not gonna work.

But if I can get somebody from 14 to even 17 or 18, I feel like they emotionally deal with the whole surgical experience better a little bit later on. And I think 13, 14, 15 year olds, it can be challenging, uh, to operate on them. [00:21:00] And just it, you know, it's a traumatic experience. It's scary, the or is big and cold and has lots of lights and, you know, they, they can't have their mom with them.

They, you know, it's just harder the younger they are when you, when you operate on it. I, I mean, I'll do it if I have to, but I would rather prefer to, to wait. So my real answer to this question though is that I think that there are doctors that have their own agenda, and I think that there are some GYNs who will not do a hysterectomy, even if it's indicated.

And there are other GYNs who, if somebody presents with pelvic pain, the first thing on their list is, well, let's do a hysterectomy and maybe even, let's take your ovaries out, 

Dr. Shanti Mulling: even though you're 27, 

Dr. Cindy Mosbreer: even though you're 27 or 30, or 35, or 40, it doesn't matter how old you are, even if you're 50, your ovaries still make hormones up until somewhere around 70 ish.[00:22:00] 

I mean, I'm 63. I wouldn't wanna lose my ovaries unless there was a darn good reason for it. Mm-hmm. Um, and, and there is, there is so, such little education on here are the treatment options. Here's a smorgasbord of things that we need to talk about from birth control to progestins to IUDs, to. Uh, conservative excision, preserving all of your parts to, if you're done with kids or you don't want kids and you have adenomyosis and you definitely have uterine pain, then you're not, you're still gonna have pain if we remove your endo and you keep an adeno myotic uterus unless you, you know, do something for that.

But it's a conversation and it's, and it's something that the doctor and the patient need to decide together. But it just breaks my heart when I see these [00:23:00] patients who come in and they've had a hysterectomy and they've had both of their ovaries removed and all of their disease is left in place. I operated on a gal who was, she was probably 30, her mom was a.

Scrub tech in my or and she saw what I did, and she's like, Dr. Moss, will you see my daughter? I'm like, of course, I'll see your daughter. And some GYN oncologist had gone and she, she did have endometriomas, but she also had a huge bowel nodule. They go and they take out both of her ovaries, they take out her uterus and leave all of the endo, including the rectal nodule.

This girl can hardly poop. Yeah. And she's miserable because she's menopausal and nobody will give her hormones because it, you know, 

Dr. Ana Sierra: bring back the 

Dr. Cindy Mosbreer: ratchet of her pain. Mm-hmm. And I think it's worse because she was black. Yeah. And, um, it, it broke my heart. I almost, when I started with Dr. Redwine, I would, [00:24:00] I would almost.

Get teary eyed when I talk to these girls. And then I just got mad and I'm like, this is ridiculous. This is just not the way to take care of people. Mm-hmm. And um, and I didn't feel that way until I saw that girl. And I, I almost started crying when I was talking to her because I felt so bad for what she had to go through.

Dr. Brighten: Yeah. And to your point for everybody listening, black women are diagnosed much longer out. So we say the average woman takes seven to 10 years. A black woman might take 15 years before her pain is believed 

Dr. Cindy Mosbreer: and they get more inappropriate surgeries. 

Dr. Brighten: They are, and they're much more likely to be offered a hysterectomy than, much less likely to get a surgery at all, and much less likely to get pain meds, be much more likely to be classified as drug seeking.

And so, you know, I think it's important that we raise this issue because, uh, endometriosis women. [00:25:00] Across the board, they stand no chance. It doesn't matter what your influence is, what your, uh, celebrity is, what your financial situation is. I mean, we have seen, uh, celebrities who have been, you know, guarded altogether in terms of their pain, but especially black women, Latinas, we know from the research, these are the ones that are most likely to be stalled in their treatment, stalled in their diagnosis, and not be believed about their pain.

Before we get into what endometriosis actually is and talking about the cause of it, I wanna play two truths and a lie with Shanti here. So I'm gonna read three statements and you're gonna let us know which one is the lie. So first you can have endometriosis without severe period pain. Second. Acid reflux and IB slike symptoms can be a sign of endometriosis.

And third, the only way for a patient to know if they have endometriosis is to have [00:26:00] surgery, which is the lie. 

Dr. Shanti Mulling: That's great. I wonder if our listeners know which one is the lie, but the third one is the lie. So I, I will reiterate that you can have endometriosis without severe pain, and sometimes we'll see patients with in infertility who didn't know that they had endometriosis until they were diagnosed with infertility, and they can even have stage four incredibly a destructive disease and not have realized it.

So experience of pain across the board is, is variable and, and we don't exactly know why that is. Uh, so. The next thing you said was acid reflux and IBS symptoms can be a sign of endometriosis. And, and I love this. Um, that is very true and one of the things that's very, uh, underestimated is that acid reflux can be a sign of diaphragmatic disease, not just intestinal disease.

And so, um, that's one of the things to keep in [00:27:00] mind when you're thinking about yourself and your pain and all of your symptoms. Certainly IBS symptoms get. Probably misdiagnosed a lot as IBS and it turns out that there's a, an element, at least in part of endometriosis, whether it's just the, the intestinal MEU of the biochemistry of cytokines, which are little negative factors in inside the fluid in your, in your gut, affecting your intestines or sometimes fully invasive disease.

So finally, the lie is that the only way to tell if you have endometriosis is through surgery. So. I would say that in some patients that might be true, that that, that when I see them, I listen to their history, I do their exam, I look at their family history, I do my own ultrasound, maybe order an MRI that it might not be entirely conclusive and [00:28:00] diagnostic.

However, there are many patients who have an endometrioma on their ovary. You can diagnose without surgery who have endometriosis so severe that it is. That it is, um, ful grad all the way through their vagina. So on a speculum exam, often this is misdiagnosed, but you can see it penetrating all the way into the vagina from the intestinal or the peritoneal cavity.

Um, and then I think when I examine someone and they have, uh, the, an obliterated cul-de-sac, which is the fusion of the vagina and the rectum, and they have deep fibrotic disease and nodules. I can almost, with a hundred percent verity, say that they have endometriosis without doing surgery. 

Dr. Brighten: Why is this lie still so commonly believed in medicine that the only way to know if someone has endometriosis is just to explore with a little peekaboo surgery?

Dr. Shanti Mulling: Well, there's, there's multiple factors, right? So [00:29:00] unfortunately in medicine, if you're in mainstream medicine, you're hired by a clinic that wants you to see 30 patients a day. So you cannot really adequately take a history, listen to someone's story, understand their pain, think about their family history adequately, look through their records, do your own ultrasound, review, an MRI look at the images.

So that's one thing. And also, as we've already mentioned, poor education around the disease itself. Mm-hmm. It's much easier just to say, wow, you have some painful periods. Let me give you a prescription for Loestrin. 

Dr. Brighten: Do you feel like it's outdated education or it's inexperienced clinicians, or if it's just because of the time constraints that really the insurance model has put on physicians?

Or is it all the above? 

Dr. Shanti Mulling: Indeed. I think it's all the above. And not just the insurance, but CEOs of organizations. 

Dr. Brighten: Mm-hmm. 

Dr. Shanti Mulling: Who, who are making millions of dollars, and I don't think most physicians are. 

Dr. Brighten: Yeah. And that is something that actually, I asked my audience [00:30:00] just the other day, what was the moment you lost trust in medicine?

And there was a nurse who made a comment. It was when the CEOs and the administrators were elevated above the physicians in terms of clinical diagnosis, care for patients, and even valuation in terms of pay. It all became about how do you milk it and make the most money off this patient, not how do you actually do Right.

And first do new harm. And I think that's important for people to hear, especially because there's a lot of clinicians who listen to this episode and to listen to this podcast altogether. They're truly heroes I think, in women's medicine, trying to educate themselves in any way they can to like better themselves.

But not everybody is able to do that or even willing to do that. And I think it's really easy as patients for us to hate the doctor 'cause it's who we see. It's the face we have. And not realize that there's an entire basically puppeteer above it all, pulling the strings. 

Dr. Cindy Mosbreer: Can I share a, uh, of course illustration?

Of course. [00:31:00] So I saw this patient once a few years ago and I did an ultrasound and I could see this big nodule or rectum. And so we were trying to get authorization from her insurance, uh, to do the surgery, and the insurance company said, no, we won't authorize it. You have to do it peer to peer. So I get on the phone with some doctor from the insurance company who was not a gynecologist, by the way, and she says, you don't.

How can you get a, a author? How can I give you an authorization for a bowel resection when you don't have a diagnosis of endometriosis? You need to make the diagnosis first. I'm like, I have the diagnosis, I have the ultrasound images. She's like, well, you have to make the diagnosis. I don't believe you're ultrasound.

I said, are you telling me that you want me to do a diagnostic laparoscopy to take pictures and then send you the pictures of what I already know that I'm gonna find, and you're gonna [00:32:00] make this girl go through two surgeries and you're gonna have to pay for two surgeries because then we're gonna find the mass.

She's like, well, if that's what you have to do, that's what you have to do. And it wasn't until my, um. My office manager, 

Dr. Brighten: Sean's so mad at this story right now. 

Dr. Cindy Mosbreer: My office manager was talking to somebody else at the insurance company about this case and whoever she happened to get on the phone said. Oh my goodness, I have endometriosis.

I will take care of this for you. And so she pushed it through, so, oh my god. 

Dr. Brighten: Okay. So like, oh my God. Endometriosis patients, we all need to get into like position of authority to make these calls. 

Dr. Victoria Vargas: Jolene, can I add something 

Dr. Brighten: to that? Yeah, go for 

Dr. Victoria Vargas: it. Because I mean, I just think that's such crap. Like honestly there are validated protocols with a high sensitivity and specificity showing that you can diagnose deep infiltrating endometriosis, especially on the bowel.

So that is that it correlates highly [00:33:00] with the diagnosis in surgery and there are, you know, scientific studies showing that. So there is no reason to make someone go through a diagnostic surgery or to deny them the diagnosis 

Dr. Cindy Mosbreer: company to listen to science. Ah, 

Dr. Brighten: snap. 

Dr. Victoria Vargas: Well, you don't wanna deny the patient the diagnosis 

Dr. Cindy Mosbreer: instead of the economists, 

Dr. Victoria Vargas: you 

Dr. Cindy Mosbreer: know, and the accountants.

Dr. Brighten: Well, let me ask you, Vicki, why is it that women are consistently told that imaging has no value? I mean, I even have gynecologists who will come on to my social media and be like, you are a quack forever saying women should get imaging for their endometriosis. And I'm like, you, sir, need to step down and learn your place in medicine.

'cause, uh, endometriosis expert, you are not, 

Dr. Victoria Vargas: I think that it has not been widely adopted in the United States, but there there is a protocol called the Idea Protocol that has been validated. Um, and it's used all over Europe and all over Latin America. So we're far behind. 

Dr. Shanti Mulling: Explain the idea so everyone 

Dr. Victoria Vargas: understands.

Yeah. So the IDEA Protocol is an [00:34:00] ultrasound protocol. It's done transvaginally, and it is, it's a step by step ultrasound that allows you to look at the bowel, the bladder, the urinary tract. You can even look at the sacral nerve roots. You have to have the training to do that, but you can diagnose.

Endometriosis, severe endometriosis. I will say that mild or superficial endometriosis you cannot diagnose, but 20% of these PA of our patients have a more severe form of it. So at least 20% of them can get a diagnosis with ultrasound. And it's used all over the world, but in the US it's not picked up.

Again, it has to do with reimbursement. 

Dr. Cindy Mosbreer: It's a dynamic ultrasound. Yeah. And the surgeons do it themselves. Yes. And so by, by us doing it, we get an idea. How does the bladder move with respect to the uterus? How does the rectum move with respect to the uterus? How do the ovaries move? Where is their fibrosis?

Like Shante was saying, if you examine somebody that has, has restricted motion on one side and free motion on the other side, um, [00:35:00] then you pretty much know something is causing this fibrotic change. And 99 times out of a hundred it's endo. Mm-hmm. And so it's, it, it gives us so much more information. 

Dr. Ana Sierra: I think that they tell patients that the imaging have no benefits because they don't know how to interpret it.

Yeah. Even radiologists don't know about endo. So even if you present or if you go to some radiologists that are not aware of this, I don't know if this is true, but sometimes the eye cannot see what the M doesn't know 

Dr. Cindy Mosbreer: exactly. 

Dr. Ana Sierra: And so if they don't know and educate themselves about that, there's might be something that they don't know that it might know, as in the materials is they are not going to be able to see it.

You have to train yourself and it's accepting the fact that you didn't know this. So that can be hard for some people. 

Dr. Victoria Vargas: Oh, I, what? Can I wanna add something? And there are courses, there's Matthew Leonardi has one in Canada. There, there's the wo, the, oh my [00:36:00] gosh. WO is the International Society for Ultrasound, gynecologic Ultrasound.

Um, there are so many ways for you to learn this. Um, the problem is reimbursement, but they're also MRI protocols. Mm-hmm. So there are MRI protocols. There's different ways you can diagnose this before or at least have an idea of the extent of the disease. 

Dr. Shanti Mulling: I have a question for Ana. Ana, do you read your own MRIs?

Yes. For ology, 

Dr. Ana Sierra: yes, I do, but I also have the help, uh, of one of our radiologist because I, I, I always like to, um, I have learned so much from her. It's a back and forth thing because I have to do a clinical exam first, as we all do in our patients with endometriosis to find the cause of the pain, and then I'm feeling this in this point.

What can you see in the images and what is shown this. Because there are special imaging for nerves, but it's really, I was telling you this about like, it's like a 3D version of like the baby's face. You cannot diagnose properly with this. [00:37:00] It's a very beautiful image and sometimes patient have to pay extra for them, but you don't really need them if you're going to make a diagnosis.

Sometimes with a good MRI focused on some parts of the nerves, so here our patients get. The whole, uh, MRI with this focus. And then after our, uh, exam, we go back into the MRI and I'm looking at the images and she's looking at the images. I think multidisciplinary care is something like basic for our patients and it's really important to LA lay on other people that know more than you, especially with imaging.

So I can, is this what I'm seeing? What are you seeing? And this is what the thing that I examine in my patient and that is getting the best care, I think. Can 

Dr. Brighten: you, uh, explain to the listeners your MRI protocol as well? So, you know, some listeners will have only been, will be told, no imaging. They'll be told ultrasound only, but there is.

Additional imaging that could be done with an MRI. So can you explain that for listeners? 

Dr. Ana Sierra: There are [00:38:00] doctors who are really good at doing imaging by ultrasound. We know, uh, Dr. Carlos Tripa in Brazil. He's an anatomist with the ultrasound. It's impressive. He can show you the muscles, the layers of the anal sphincter.

He can show, he can show you anything that you like. But not everybody has this training. And, um, ultrasound is operator depending. It is cheaper, but it's operator depending. And MRIs, we can do the same protocol in every patient. So that's why it's helping us here, because here we can have, um, an MRI and you know that MRIs have a gray pattern.

So if you add white into it, grays are going to be more noticeable. So we use endo vaginal gel and also rectal gel. So we can see a lot better. We can do, we would do both without gel and with gel. So you can see how structures move in one another, and you have fibrosis in the teac ligaments. You can see them also.

Rectal nodules are so much easier to see if they have, uh, [00:39:00] nothing in their rectum and there's gel on it. It, it looks more beautiful, but it's easier to diagnose this way. 

Dr. Brighten: I wanna, so thank you for that. I wanna a, um, talk about how endometriosis is diagnosed. 'cause I feel like we're, we're dancing around that one.

Be very specific, but first, Vicki, you mentioned superficial. 

Dr. Victoria Vargas: Yeah. 

Dr. Brighten: Versus deep. Mm-hmm. Infiltrating endometriosis. I don't think you actually said that second part, but I, I want you to explain that to people because this is where people will say like, oh, imaging can never show endometriosis. But there's nuance here.

Dr. Victoria Vargas: There's a lot of nuance. So there's three different types of endometriosis. There's deep infiltrating endometriosis, which is the kind you can see on imaging very easily endometriomas. Which are the ovarian cysts that endometriosis can cause. You can see those on imaging easily. Then there's superficial endometriosis, which can be exquisitely painful, but it's not as easy to see on imaging.

There are some MRI protocols that are, you know, they're, they have these very fine cuts that can identify [00:40:00] superficial lesions. Matthew Leonard, I mentioned him again in Canada. He has, um, techniques to see superficial lesions using ultrasound. Um, but you cannot exclude superficial endometriosis with any imaging.

So like, even if your imaging is completely normal, you can't say this patient doesn't have superficial disease. 

Dr. Brighten: Mm-hmm. I would like to hear from Cindy, what are the magic words that a patient can use who's been suffering from years to get imaging When their doctor says The only way to diagnose this is to do laparoscopy, how can they advocate for themselves to get that imaging?

Dr. Cindy Mosbreer: Well, I think one magic word is I'm worried my kidney's gonna die because I think my ureter, uh, occluded. 

Dr. Brighten: It's very magical. 

Dr. Cindy Mosbreer: Nobody's attention. But, but, um, no. So I, I mean, I think that they just need to tell the doctor, I want, I would like you to order me an [00:41:00] MRI if, you know, if that doctor can't do their own ultrasound, because ultrasounds at hospitals, done by techs, read by radiologists who are not experts in endometriosis, will not see anything other than an endometrioma pretty much.

Half of the adenomyosis that, that we see on our own ultrasounds is not called by radiologists. The uterus has to be two, three times bigger than it ought to be. Before a radiologist will think about calling something adenomyosis. They won't see rectal nodules 'cause they don't look at the rectum, they don't understand that they can look at the rectum.

Um, and so asking for an ultrasound and them sending you to the local hospital where a tech does does the exam, isn't really gonna help. It's not gonna see if an ovary is stuck down, they're not gonna, most of them. Every once in a while you'll see that somebody [00:42:00] describe a peritoneal inclusion cyst, which is like a little filmy layer of Saran wrap.

That happens because of an, the inflammatory response of the body that traps fluid and can trap the ovary in the tube. And, and, um, you can see those on ultrasound and those are usually diagnostic of endometriosis unless somebody's had prior surgery or, uh, or a significant pelvic infection like chlamydia.

Sometimes you can, you can have that from a sequela from that. Um, but again, MRI is so technique dependent and in the US we do not have specialty radiologists except for in very few locations. There's a guy at Mayo Scottsdale who is wonderful. I don't remember his name. 

Dr. Victoria Vargas: Oh, I, I just know the woman, Wendy, I think her name is Van.

Van Van Buren. Yeah. And Luciana Shami, 

Dr. Cindy Mosbreer: yeah. 

Dr. Victoria Vargas: In Boston. 

Dr. Cindy Mosbreer: But, [00:43:00] um, there are, there are very few, uh, endo experts. And the story I was gonna tell is that, uh, few months ago I was on NPR in Seattle after Bindi, Irwin announced that she had endometriosis and so they decided that they should talk about it. 

Dr. Brighten: Mm-hmm.

It's always a celebrity. It is, yeah. And the rest of us are like, um, do we not matter? 

Dr. Cindy Mosbreer: So she asked me about imaging and I said, I do my own ultrasounds, but I rarely order MRIs to see endometriosis unless I have a very specific question. And the reason is the vast majority of them don't understand endometriosis.

They don't understand what the pelvis looks like in endo, and they don't know what they're seeing. It's like you said, 

Dr. Ana Sierra: the eyes cannot see what the mind doesn't know. 

Dr. Cindy Mosbreer: It's so eloquent. She's beautiful in every way. Um, but so anyways, I said, radiologists don't understand. End up. So the next day I get an email from this guy [00:44:00] who's a professor of radiology at University of Washington, demanding that I retract the statement and how dare I say this?

What evidence do I have? So I wrote back to him and it was very nice, and I said, I appreciate your concern, but this is why I said what I said. And I went into what I just said about if you get a, a ultrasound from a hospital done by a tech read by a radiologist, they don't look at the colon, they don't do a dynamic exam and talk about how things move.

Um, and they, they rarely will see a mass in the bladder, although that's quite rare. And, um. Sometimes they will see something, but, but not usually. And then I wrote to him about the MRI reads that I had seen recently and just the day before, I had a patient with a huge five centimeter rectal nodule that was as obvious as the nose on your face.

It was the [00:45:00] first thing. I saw it when I put the ultrasound probe in and it was massive. And so I, the, the, she had had an MRI and the reading said there was tethering of the cervix to the rectum and the uterosacral ligament. That's it. Visualized segments of bowel normal. And so I cut out the clip. I screenshotted the read of the MRI.

And I also sent him a picture of my ultrasound of this big mass. And I said, I would love to help you teach your residents. 

Dr. Brighten: Mm-hmm. 

Dr. Cindy Mosbreer: What endo looks like. I can show surgical videos, I can show them, uh, various manifestations of intestinal endo. I would love to, to help you educate the next generation of radiologists and never heard back from him.

Dr. Brighten: Oh yeah. 'cause my question to him is like, what are you doing to ensure that radiologists actually know how to read this? And, you know, I've shared with [00:46:00] my listeners before, I was called, um, attention seeking by the radiologist that I challenged who said, you have no endometriosis. You don't have adenomyosis.

I'm like, I can see my adenomyosis. That's not my training. That's your training. And if I can see it, it's a problem. He was like, it's not there. My PCP. She was trying to fight with him. And then finally, uh, it was m Cabrera that, uh, Anna practices with, and I sent it to him and he's like, let me send it to my radiologist.

And they're like, girl, let me tell you a story about your endo. There's so much, I'm like, I knew it, I knew it. But the, the limiting factor is radiologists. And it sounds like, um, you know, for patients getting with an actual endometriosis excision surgeon who's specialized in it, is the best way to get imaging to get the, the ultrasound done right.

And that the MRI is only as good as the person who's reading it. So how can we. Ensure that we can get the MRI to a radiologist who's [00:47:00] worth it, who's worth our time. Right. And no one have to argue. Um, and also like how do we get more radiologists invested? Shante, if you wanna take that. 

Dr. Shanti Mulling: Well, so this is a little bit of a side take from what you're saying, and that is that the European guidelines, so European Society of Reproductive Endocrinology, ESRY has a guideline that if, if a woman has severe pelvic pain, suspected endometriosis, that the first line is an MRI.

And that if the MRI is negative, they absolutely need surgery because they have pain that's unexplained. The MRI doesn't show anything. And if they have an MRI that shows an endometrioma or adenomyosis or tethering of the uterosacral ligament or invasion of the bowel, then they know that at least, and they're prepared.

Perhaps also their radiologists seem to have a lot of training in endometriosis, but. If that's the standard of care in a huge part of the world, that first line is get an MRI. Even if [00:48:00] our radiologists aren't able to pick up endo as easily, at least they're saying it's negative. And the next step then is evaluation with a specialist.

Mm-hmm. So, uh, the value of a negative MRI actually is not a bad thing, but only if 

Dr. Victoria Vargas: it really 

Dr. Cindy Mosbreer: is negative. 

Dr. Shanti Mulling: This is true, of 

Dr. Cindy Mosbreer: course. 'cause because in, in, like I operated on a girl not long ago, she was 18 or 19 and she had had a diagnostic laparoscopy probably six months before I operated on her and they said, oh, it's normal.

Everything looks fine. I flipped up the uterosacral ligament and she had a big peritoneal pocket with about a centimeter and a half nodule of endo in the cul-de-sac. I mean, she had endo everywhere. She also had some more juvenile appearing endo other places. My point is. Is that it's worse for somebody to have an intervention, whether it's a, uh, radiologic imaging or a [00:49:00] diagnostic laparoscopy and be told you don't have disease when they actually do.

Because then they're gonna say, well, I don't know why I have pain because it can't be endo because I had a negative study, or I had a negative laparoscopy. 

Dr. Shanti Mulling: I think the, the point of the, 

Dr. Cindy Mosbreer: and that it really messes with their head, 

Dr. Shanti Mulling: the European point is that if, if the MRI is negative, there's, there may well still be endometriosis and you need to go to the next step 'cause we didn't find it.

But there's a, there's a baseline belief that the pain is caused by something. 

Dr. Cindy Mosbreer: But in the US doctors see a negative imaging report and they say, you don't have endo. 

Dr. Brighten: I think that's a, a good point that Shanti's making is that the algorithm in Europe is, if it's negative, she still needs help. And in the US it's, to your point Cindy, is that if it's negative, what's negative?

What are you whining about? Right, exactly. And it's kind of what we've talked about. So it sounds like, you know, in my question of [00:50:00] how do we get to the diagnosis of endometriosis there is, needing with a specialist would be the ideal place to start, but we need to have a physical exam. There needs to be imaging, but even if your imaging is negative, that doesn't mean you don't have endometriosis.

And you may very well need to go the next step in surgery. And we're gonna go into what that next step is in surgery in an upcoming episode. But I want to define endometriosis. So for people who are listening, so. Let me ask you, how do you define endometriosis in a way that actually reflects what you see in surgery?

Not what the textbooks are teaching clinicians. 

Dr. Ana Sierra: It's a chronic, systemic inflammatory disease. Beautiful. Because sometimes if it's not about fertility, you don't even need treatment. No, and it's something that I've seen my patients deal with, I think. Calling it a chronic inflammatory disease. I try to explain my patients.

It's like having a cold that never leaves [00:51:00] because your in your immune system is always active and it's always fighting. That's why fatigue is so common in our patients. That's why, that's why so many symptoms that are not just explained by a pelvic disease happen to them because they are sometimes really frustrated because they want to handle everything.

They don't want to control everything. And still we're failing them because we're not giving them the right answers and the right treatment. But it's because we're not offering, or clinicians that don't know this disease are not offering a treatment for a chronic systemic disease that is taking their whole bodies and sometimes even their lives.

Right. So, 

Dr. Cindy Mosbreer: well, and some of them will feel like they have their flu, have the flu when they Yeah. Uh, endo is, is flaring the, their skin hurts and they're like, why do I feel this way? I'm like, it's inflammation just going crazy. 

Dr. Shanti Mulling: Yeah. But that, that was beautifully put, Anna. 

Dr. Brighten: Yeah. Well, let me ask then on a, why do you think it is so dangerous that endometriosis is still [00:52:00] framed as a reproductive condition or a pelvic condition only?

Dr. Ana Sierra: For us, it is one that delayed on the diagnosis and also the treatment because as they were saying before, some patients do not have any pain and they, their only symptom is infertility not explained. And so the, there's like, unless you want to have babies, you're going to have a treatment. Women are so much more than baby makers and they don't need treatment even before they want to have kids.

So if we upfront, and if we start treating teenagers, as you were saying, I think we're gonna have thirties and forties women who are healthier because we didn't shove, uh, contraceptives in their throats and their teens, and we listen to them and we start looking for the causes of their pain. 

Dr. Brighten: Can I ask you, I know Vicki, you have something to add, but I I wanna ask you.

Infertility in the absence of pain, how often is unexplained infertility [00:53:00] estimated to be endometriosis related? 

Dr. Ana Sierra: We know that 50% of patients that go to a fertility clinic are going to have adeno or endometriosis, or both, at least. At least. Mm-hmm. 

Dr. Brighten: Mm-hmm. And we have a big problem in the United States that private equity groups have now moved into the fertility arena.

And so we're seeing less incentive to diagnose and more incentive to put them through multiple cycles, which we know the exposure of the hormones that women are, are undergoing through IVF can make endometriosis so much worse and even make the uterus. No longer inhabitable. And I say that as a woman who went through IVF who didn't know she had endometriosis until my third retrieval, and I was in the worst pain of my life and couldn't move for three weeks.

And I'm like, wow, it would've been really great had anyone investigated this. But what they said to me is, you no longer have period pain. It could never be endometriosis. 

Dr. Ana Sierra: Yes. Uh, also for patients, I think it's really helpful if we [00:54:00] talk about the five Ds because if you have this mana that it's pain during your menstrual cycle, dys, seria, sometimes uh, the pain in your bladder doesn't get like really.

Think about, or it's like an afterthought for some surgeons or for some doctors that doesn't know and they do not ask the proper questions. Because if I tell a patient, do you have any pain while you bleed that while you are um, pee, they're gonna say, no, I don't have any pain while when I trying to urinate.

So I would tell them, okay, if you sit in a toilet, do you have to wait a little? And then the pee will start? Oh yes, that happens to me. Oh, and how about, uh, the frequency of your urination does sometimes feels that you're peeing every hour? Oh yeah, that also has happened to me. Okay. And how about when you empty your bladder?

If you empty your bladder, do you feel that you have empty anterior bladder properly? Oh, yes. And sometimes I have to push. Those are symptoms of endometriosis is also also the dys case. The pain while trying to poop. It's also very important. And sometimes [00:55:00] we don't ask the proper questions. If you tell the patient, have you ever feel like a thunder going through your anus?

A lot of patients are going to tell you that this new Lightning Lightning, sorry, lightning missed translation. I'm sorry. 

Dr. Brighten: I've been there. 

Dr. Ana Sierra: Sometimes. Sometimes it 

Dr. Shanti Mulling: sounds like something. 

Dr. Brighten: Yeah, but you're like, was, 

Dr. Ana Sierra: and last but not least, pain during sexual intercourse because sometimes, uh, they tell them, or here in Mexico it's like husband will tell them that you are not good for me because I'm too big for you.

Or you have something faulty because you have pain while having in intercourse. And you have to explain them that it's not the same pain when you are beginning the, uh, penetration in the middle of the penetration at deep penetrating. There are different causes and all of this information gets missed because sometimes we don't have the timing of the consult or we don't take the time by doing the proper questions.

Mm-hmm. So I think the five Ds are really important. 

Dr. Brighten: I wanna ask about ovulation pain too, Vicki, [00:56:00] because there are women who are under the impression that if they don't have period pain, but every time they ovulate. They're having the worst pain. They're down for a day. That can't be endometriosis because it's only ovulation.

Can you speak to that? 

Dr. Shanti Mulling: It's very common to have pain surrounding ovulation in patients with endometriosis, and it's a hormonally responsive disease, and it's responding to the shift in hormones, increase in en estrogen decline and progesterone, and so it's really common to have pain in the second two weeks of your cycle.

Um, in our endometriosis patients. 

Dr. Brighten: So you're, you're, are you talking about the luteal phase or are you talking about the follicular phase? The 

Dr. Victoria Vargas: luteal phase. Well after ovulation, so the two weeks before. Okay. Including your period. So like a lot of our patients are in pain, like three weeks of, not ev everyone manifests differently.

Some people I even have patients sometimes have pain after their period. There's some upregulation and downregulation of hormone receptors on individual lesions. So it can, the pain can really fluctuate and be different, but, but you often see ambulatory pain in patients with endometriosis, [00:57:00] so it's almost like a telltale sign.

But can I just add to what Anna was just saying about this being a reproductive disease, like endometriosis causes visceral pain. Visceral pain is the type of pain that makes you feel like. You need, it's a surgical emergency. You look like you're having a surgical emergency when you have visceral pain.

Mm-hmm. Like calling this a reproductive disease is just, it's just, I can't begin to express just how much it minimizes this disease. It is, it is a disease that it really debilitates your entire body because it, to experience that level of pain so often is hard on your body. The, in, in combination with the inflammation that you have.

I just, you know, I, I can't really fully articulate just how devastatingly, um, minimizing that is 

Dr. Brighten: to 

Dr. Victoria Vargas: patients that have it. 

Dr. Brighten: Yeah. I wanna say endometriosis is underfunded, PMDD, which is a severe, severe form that makes you wanna unlive yourself of PMS [00:58:00] severely underfunded, especially when we start to compare it to things like, um, postpartum depression.

There has not been studies well enough looking at PMDD and the crossover with endometriosis. And why bring this up is endometriosis is still two to three weeks out of every month in your life. PMDD, we know mental health issues are very, very prominent above among those with endometriosis. PMDD is still 10 to 14 days out of every month of your life.

And more and more endometriosis patients are saying, I'm being diagnosed with this. We're talking about women losing half their life in their reproductive years. Six months out of every year is gone and they're being reduced over and over two. Well, if you don't wanna have a baby, why worry about it?

There's always the pill. Ashanti, was there something you wanted to add? 

Dr. Shanti Mulling: Yes. Well, I love that you're bringing that up because not only is it, is it affecting the woman and her wellbeing and her sense of her her life, but it's also. Important economically, [00:59:00] she's not as productive. Mm. And not as creative and not as able to care for her children.

And now you speak capitalism lately may. Exactly. So maybe capitalism at least can hear that. I, I wanted to make another point about ovulation pain. And so, um, a couple things. I think it can be both anatomic and also hormonal. 

Dr. Brighten: Mm-hmm. 

Dr. Shanti Mulling: Hormonally mediated. So sometimes the ovaries are bound in scar tissue, and so ovulation feels like an increased pressure and increased pain.

And with endometriosis, but also we all acknowledge and, and just to remind our, our listeners that. Endometriosis is mediated very much by estrogen. And ovulation is that moment in the cycle where estrogen really peaks. Mm-hmm. So, so if for, if, if you are watching me, it's a flat line and it starts to increase and then it's a skyrockets up and then comes down right after ovulation, that increase in estrogen stimulates endometriosis.

And so that is a moment where you might have an increased. Or [01:00:00] beginning the, the increased part of the painful cycle. 

Dr. Brighten: Yeah, and to your point, and as Cindy said, some of these women feel like they have the flu. We know that endometriosis loves to interact with mast cells, loves to get prostaglandins up, histamine up.

When estrogen spikes, we can see more histamine rises with that as well. Histamine then comes in and says, let's have more estrogen available. And so you can get into this cycle where you feel like your body's betraying you, but really it's doing exactly what it's designed to do. There's just dysfunctional tissue.

You are not dysfunctional. This endometriosis tissue is acting in a way that is not in accordance of how you were designed, and it's not anything you did and it's not your fault. I wanna ask though, why is it, do you think that endometriosis is not classified as a cancer? 

Dr. Ana Sierra: There's no atypical in the cells.

I mean, cancer is a mutation in the cell. Mm-hmm. That means that the cell doesn't make like what it usually does. And it, the, the way [01:01:00] that it grows and the way that it spreads, doesn't commute with the endometriosis. Endometriosis are endometrial like cells and they produced, 

Dr. Cindy Mosbreer: I think the intestinal nodules.

There's some data that when intestinal endo happens, it's like it grows really fast and then it gets to the size that it is, and then it doesn't change much over time. 

Dr. Victoria Vargas: David did, red wine also did a study looking at this, and he found that there was not spread over the years, but, um, the Matt Coff paper found that there was like increased severity of disease in that the chronic inflammation and fibrosis like worsens the adhesions and maybe you might have a slightly larger nodule, but like there's not a spread.

It's, you're not gonna go from stage one to stage four with deep infiltrating bowel disease. You're gonna stay at your stage more or less. 

Dr. Brighten: Yeah. We're gonna talk in upcoming episode about Endo brain cardiovascular risk, because we are more than just endometriosis. The systemic inflammation is impacting our quality [01:02:00] of life.

What I am curious about though, is that within the endometriosis community, there are women who are saying, we would love to see this, this classified as a cancer. Because then we'd be taken seriously, because medicine takes cancer seriously. They don't take women's pain seriously. But I, I'm just wondering if anyone else has anything to answer of like, why endometriosis can't be cleanly put in the cancer category.

Dr. Victoria Vargas: You know, cancers originate from a single cell that has a mutation, either hereditary or somatic mutation, meaning like a spontaneous mutation in a, one of the genes that allows the cell to, to. Proliferate uncontrollably, but with endometriosis, the, the origin is, is blurry, I guess. Blurry cellular. Yeah. So it's not, they're diff they're not from the same origin.

And so that's why it can't cleanly be diagnosed as a cancer. But that doesn't mean it shouldn't be prioritized. 

Dr. Shanti Mulling: Exactly. 

Dr. Victoria Vargas: It should be important in and of itself. Yeah, exactly. 

Dr. Cindy Mosbreer: Why it's harder to do immunotherapy for [01:03:00] endo, because with malignancies, you can create killer T cells that are designed to bind to a certain receptor on the malignant cells.

And I think they've tried to do that. Yeah. 

Dr. Shanti Mulling: But I don't know if we've completely 

Dr. Victoria Vargas: tried that. I think there's still a possibility. 

Dr. Cindy Mosbreer: Right. But it's, I think they're having more trouble because of that, that, that it's not a single cell origin. 

Dr. Victoria Vargas:But even if it was looked at like ulcerative colitis or uh, Crohn's disease, like even if it was just elevated to that level.

You know, it would get a lot. The funding for Crohn's disease is like. 15 times or more 

Dr. Brighten: Hold up funding for erectile dysfunction and male pattern baldness compared to endometriosis. 

Dr. Victoria Vargas: Yeah. Yeah. 

Dr. Brighten: Like, uh, you're losing your hair. I'm not pretty anymore. I literally can't walk and I'm vomiting and I can't take care of my kids.

Like, like how are these things, uh, you know, not created equal, like in a man's mind of like, you know, cancer, ulcerative colitis, [01:04:00] inflammatory bowel disease, endometriosis. And I say this in a man's mind, there's gonna be someone that's gonna be like, don't blame men. Men have had the reins for far too long and is why women's medicine is so far behind, especially in the us.

Ashanti has brought up, we see other nations. Have prioritized women's health, not just for their ability to bear children, but for their ability to show up and have that quality of life, like actually viewing them as a human. And I think that's part of the issue in the United States is that we are a reproductive commodity.

We are a means to the end by some of these people that control the purse strings. 

Dr. Victoria Vargas: That is why it is so dangerous. I mean, that is literally, you just stated why it's so dangerous that this is thought of as a pelvic disease. Mm-hmm. In women. Like this is a systemic disease that triggers further disease and it needs to be recognized as such.

It's a disease of the body that is gonna impact your entire body and it's gonna trigger further disease. And like, I [01:05:00] think the closest thing I can think of that is taken very seriously is like Crohn's disease and ulcerative colitis. Mm-hmm. It impacts your whole body, your ability to eat. You know, that is the joy of life for so many people.

And I think endometriosis, it SAPs the joy outta life for so many of our patients. 

Dr. Ana Sierra: Patients that you see that have ovarian pain, especially during ovulation, and that it decreases during menstrual cycle. It's uncommon for me to find, uh, vascular compression syndromes not, and 

Dr. Shanti Mulling: ah, it's excellent. That's a good pearl for, 

Dr. Ana Sierra: so it's like a, a way of a telltale of what?

Um, the questionnaire that I do and the questions that I present my patients in the office, if the pattern of the cyclical pain is worse during ovulation than menstrual cycle is often the cause of the pain, something vascular done endo for in my yeah. Little cohort of patients and in my experience. 

Dr. Shanti Mulling: Yeah.

So that is a beautiful pearl to add. Yeah. And especially for those of us who aren't always thinking [01:06:00] about vascular compression and neuroanatomy as much as you are. 

Dr. Brighten: Let me ask you, is endometriosis caused by retrograde menstruation? 

Dr. Ana Sierra: No. 

Dr. Brighten: Why do doctors keep parroting it like it's the gospel? 

Dr. Ana Sierra: Because they don't want to treat themselves, train themselves even further, or they don't want to see the reality, or they just don't care about it.

I mean, it, it's, it's the easiest explanation. And I'm like, okay. Uh, a friend of mine had a patient with an OSIS in the larynx. Explain that to me, please. Mm-hmm. And, and it is, it's impossible. I mean, it's a multi-organ disease that has a lot of causes, and it's not only like, because you menstruate on the inside.

Dr. Brighten: Well, let me ask you, what is like some of the best evidence to refute that myth? 

Dr. Ana Sierra: Okay, well, it's, it's a lot, but Okay. Buckle up. Buckle up. No. Uh, first of all, I think, uh, you have to see the way that endometriosis is not the endometrium I. If you [01:07:00] remove the uterus from a person, it's not, you're not gonna remove the disease if you have adenomyosis that it's only in the uterus and you remove the uterus.

Okay. But if you're looking for the source of endometriosis, you have to look for everything because it is endometrial like cells that are not the same as the endometrium. And the other thing is that the way that it, uh, spreads, it's not the same thing. No. And how, how would you explain endometriosis is in the lung or in the eyes or in the nose that they have found or in the skin.

So I think. We have to really educate the patients in order for them to understand the disease, in order for them to know that their immune system is really important and the way that they eat and the way that they think it's even really important. 

Dr. Brighten: Well, and endometriosis has also been documented in girls who have not reached menarchy, so they haven't had their first period.

So how do we explain that? And now endometriosis is being [01:08:00] documented in men, and I'm just curious what the table thinks about. Endometriosis being discovered in men, will we actually get research funding? Now, 

Dr. Victoria Vargas: it's not common enough, but I think Cindy had a really good comment about this yesterday. 

Dr. Cindy Mosbreer: There's an Italian gentleman, he wrote two papers, uh, where he did autopsy studies on baby girl fetuses, um, and found a 15% incidence of endometriosis in the uterus, sacrals, and the rectovaginal septum and things like that.

There are at least two papers by a pathologist, one from the seventies, one from the nineties on the concept of peritoneal metaplasia, and that the peritoneal cells, it's like a saran wrap lining, that that is, that lines are abdominal cavity. Um, it's very similar to the ci rosa or the outer layer of our organs, specifically the intestines and the uterus and things like that.

[01:09:00] And that these peritoneal cells have the ability to morph into tissue that resembles multiple different types of tissue from the Malian system or the female reproductive system. So endometriosis is the most common. Endo cell posis is where the tissue looks like the lining of the fallopian tube. Endo CICS is pretty rare, but I've seen it where basically there's a blob of this OID stuff that looks like cervical mucus and there's actually glands of endo, endo, cervical type glands in those masses.

Uh, there's a thing called. Peritoneal Mosis, peritoneal Sem, and 

Dr. Brighten: the listeners are like, what? 

Dr. Cindy Mosbreer: It's basically where you get fibroids outside of the uterus. So you can have broad ligament fibroids, which are actually relatively common, but you can also have fibroids [01:10:00] hanging off the mesentary of the colon.

And so these tissues can turn into, uh, fibroids. And then there's primary peritoneal cancer where, uh, somebody doesn't have their ovaries. The ovaries have been removed many years before and they get what looks like, uh, in, uh, ovarian cancer. So all of those, all of those things speak to the fact that endometriosis is not retrograde menstruation.

Mm-hmm. In addition, almost every. Lesion on the colon in the small bowel is on the anti mesenteric surface, so the mesentery is where the fat and the blood vessels and the nerves come to the colon. And it's always on the backside. So if you think of the colon as a clock face, and six o'clock is where the mesentery is coming in.

12 o'clock is the anti mesenteric surface, and almost every single lesion that I have ever seen on the colon is based primarily at that anti mesenteric [01:11:00] surface. 

Dr. Ana Sierra: At the 12 o'clock. 

Dr. Victoria Vargas: 12 o'clock. Yeah. The 12 

Dr. Cindy Mosbreer: o'clock, yeah. 

Dr. Victoria Vargas: Yeah. But I don't think that, like, I don't think doctors believe in retrograde menstruation be in like in a nefarious way.

Like I don't think of it that way, but I do think that it's very harmful. It's probably just what they learned from the beginning. It's like what I learned in med school. So I, I mean, if that's your only education about endometriosis and you have no new information, that's what you're gonna say for the rest of your life.

Dr. Cindy Mosbreer: The worst thing about retrograde menstruation though, is that if you believe that somebody's going to form new endo every time they have their period, then the only way to fix endo is to take the uterus out. 

Dr. Brighten: Or suppress their, their period altogether 

Dr. Cindy Mosbreer: or take their ovaries out. 

Dr. Brighten: Or take their tubes. Yeah.

Dr. Victoria Vargas: This is why so many doctors dismiss surgery as a treat, a therapeutic option for these patients. Wait, I just think it's harmful, but not in a nefarious way. It's in an uneducated way. 

Dr. Shanti Mulling: What's really interesting is that the person who developed this theory of retrograde menstruation, a Dr. Sampson in the, I think [01:12:00] the 19th, twenties, 19th century, yeah.

So his theory, he, he actually had multiple theories and he talked about endo cell posis. He was anatomist a pathologist and also really very interested in endometriosis. But he talked about the osis or Embry theories. So I, I actually think that a lot of endometriosis. That people are born with it and that it is a failure of proper migration of the cells that ultimately form the, that's what uterine cavity 

Dr. Cindy Mosbreer: that's believed.

Dr. Shanti Mulling: And, and that the, the, and what we do see often is the most common places where we find endometriosis are along those pathways of cell migration, embryologically, and the, um, left side of the diaphragm closes later than the right side. So we often see more right side, 90% of diaphragmatic diseases on the right side.

And so that, that closure of that, um, embryologic. [01:13:00] Anatomy happens a little differently on left and right, which is why we have more disease on the right, I believe. 

Dr. Cindy Mosbreer: I think the biggest nail in the coffin of retrograde menstruation is if you look at the genetics, like Anna was saying, of native endometrium in the, in the lining of the uterus, and then you look at endometriosis, there are similarities, but there are a lot of differences in the, in the DNA and uh, the receptors, the genetics of it.

So the vast majority of endometriosis accepting scar, endo is not an autotransplant. 

Dr. Shanti Mulling: Right? Although utopic meaning the cells inside the uterus, the endometrial cells inside the uterus of patients with endometriosis are also abnormal. And so. 

Dr. Victoria Vargas: There's communication, 

Dr. Shanti Mulling: there is some, yeah. Whatever we wanna call it.

Those cells are abnormal, contributing to infertility too. 

Dr. Victoria Vargas: But it's very 

Dr. Shanti Mulling: complex, 

Dr. Victoria Vargas: right? It's complicated. The acceptance of retrograde [01:14:00] menstruation is in the way that basic science research is designed with this theory as the origin impacts the generalizability of those results. So I think there's just a lot of harm with the wide acceptance, and I really wish we could, um, dispel this theory as the primary way that endometrial occurs.

It's 

Dr. Cindy Mosbreer: disappointing to read papers, and you read the first paragraph of the paper and it says, endometriosis is an enigmatic disease caused by retrograde menstruation. And then it goes on to talk about, it's like it is not enigmatic, it is not caused by retrograde menstruation. 

Dr. Brighten: Well, let me ask, 'cause this was actually a question Ashley Laxton sent to me and she wanted to know what can be done through continued education for gynecologists to end the misinformation that they primarily spread about endometriosis, retrograde menstruation, getting pregnant, cures it, removing the uterus, cures it.

And so this is a big [01:15:00] question in the endometriosis community of like, how do we stop the doctors who are supposed to be the first line you go to from being the perpetuators of this misinformation? 

Dr. Cindy Mosbreer: I honestly think that social media and the Endo advocates have played a huge role in the last 10 years in educating doctors.

And it's totally 

Dr. Shanti Mulling: true 

Dr. Cindy Mosbreer: and 

it's 

Dr. Shanti Mulling: forcing the subject. 

Dr. Cindy Mosbreer: It is. We have no control over what is taught in medical schools. Um, ACOG has some control. Andreo, which is the Council on Resident Education and O-B-G-Y-N, has control over what is taught in residencies and until the critical mass of loud enough voice gets in their head and says, this is not true, here's what the data shows and give, show you paper after paper, after paper, after paper.

That, that. Supports [01:16:00] peritoneal metaplasia. And then at puberty, when, when the ovaries start making estrogen, then that acts like water and fertilizer for the, these seeds of endometriosis that then start growing. However you want to describe it, we don't know exactly the mechanism, but we know it's not primarily retrograde menstruation.

We know that pregnancy is a high progesterone state that can suppress the biologic activity of endo, just like birth control, just like progestins. Um, but it's not a cure and it's not gonna stop the growth. It will slow it, but it's not gonna stop it. How do we get that into, into the, the, what comes down from on high, I think.

I think the, the advocates people with Endo and people who have somebody in their life with Endo who they, they care about it. Um, the, they get loud enough and they get to a point where, where ACOG has [01:17:00] to listen to 'em, creag has to listen to 'em. 

Dr. Brighten: Well, you, to your point, it took, um, tens of millions of women on.

Instagram on TikTok talking about how painful IUDs were before acog finally in 2025, decided let's actually study and look at like, is, is Tylenol enough? Let's, because no other country says it's enough, but you know, we just like, it's just a woman. Like she can deal with her pain. Right. 

Dr. Cindy Mosbreer: Let's talk about doing paracervical blocks before we do endometrial biopsies and Yes, 

Dr. Brighten: and well, we're gonna get all into this all in the, in the pain episode.

But, you know, it's, I think, really disheartening for the patients to hear that like, you have to keep fighting 'cause you're so fatigued, you already have anxiety. You're already in so much pain, like you're all of this, and yet you have to keep fighting. And it's, you know, it, it really came out of me having.

Six miscarriages and, and losing my baby last year where I was like, if I'm gonna fill this pain, I'm gonna channel it into no other woman having to fill this pain because this is [01:18:00] so unacceptable that even as a doctor with everything I know and advocating for myself still, I was being dismissed in all of these ways.

And I think that for those of us who have found relief from pain, who have entered another stage in, in, in the journey, I would say like when you're on the road ahead and you can see the, the, the potholes behind you, it is a beautiful thing when you can tell women who you know, who are 15 listening to this, like what is coming on the road ahead and what you can look out for.

I do wanna ask, uh, is there any legitimate testing on the horizon? There's all these talks about like, maybe we can use menstrual blood to diagnose endometriosis. Maybe maybe we could use saliva. Maybe there's certain markers we can look forward. Is there anything we can look forward to that's actually being iterated on in the research?

Dr. Shanti Mulling: I can answer that, 

Dr. Brighten: right. 

Dr. Shanti Mulling: So, so, um, I myself am involved in a study looking at, um, uh, cells in the bloodstream that can [01:19:00] identify endometriosis. And we have tests for cancer that can be done with, with blood work. And so that's, you know, we're still in the preliminary phases. Um, but for many years there has been an endometrial biopsy test called Recept Viva that looks at a inflammatory marker, BCL BCL six and.

This test is a little invasive. It's an endometrial biopsy, so it's kind of like having intre and device placed for our listeners. Uh, however, it's a little quicker than that, an IUD, and then once it's over, it's over and you're not left with some cramping once the IUD is placed. So it's a little easier than that, but that, um, that test is over 90% sensitive to picking, to suggesting the possibility of endometriosis.

For many years, this test was only available to reproductive endocrinologists in, in vitro for ization clinics where they would finally do the test if someone had unexplained [01:20:00] infertility and was not responding to IVF to see if they needed surgery for endo. Now this test is actually available to patients.

They can purchase the test and then go to a doctor and ask for the endometrial biopsy so they can get this test on their own. But it's just not widely publicized. 

Dr. Victoria Vargas:But the, I think the downside to that test is that it can't distinguish with that inflammatory marker elevation between adenomyosis and endometriosis.

So you can see that 

Dr. Shanti Mulling: elevation. Yeah, an ultrasound can really give you a visualization of adeno, but it still is something that, it's better than nothing if it's positive. 

Dr. Victoria Vargas: Yeah. 

Dr. Shanti Mulling: It has a, a, a really strong positive predictive value. 

Dr. Brighten: We've mentioned adenomyosis multiple times in this episode. Vicki, can you define it for the listeners?

Dr. Victoria Vargas:So it's like the forgotten cousin of endometriosis? Endometrial like, uh, glands and stroma located within the muscle of the uterus. Talking about diagnosing endometriosis is, is difficult, but adenomyosis is even, I feel like less often diagnosed, and it is, it [01:21:00] can have significant sequela in terms of inflammation, pain, and also heavy menstrual bleeding.

So for patients with heavy menstrual bleeding and pain with their periods should suspect adenomyosis. 

Dr. Brighten: Well, this has been a fantastic conversation for everybody listening. In our next episode, we're going deep on pain, women's pain especially, and why medicine is failing us. We're gonna talk about treatment options, how to get diagnosed even further with other conditions.

 

It could be outside of Endo, and we're gonna talk treatment options outside of surgery. So I look forward to seeing you then.