Endometriosis Imaging: Why Your "Normal" Results Don't Rule Out Endometriosis

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0:43Find Oli's sleep solutions for the whole family at Oli.com. That's O-L-L-Y dot com. Brian Johnson's girlfriend, Kate Tolo, may have endometriosis. And your guys' first question was, what the heck is going on in this photo? So for all of you who watch this podcast, you can zoom in on this photo and see that, yeah, things are a little bit odd in the room. Now, if you can't see the photo, let me just like describe this for you. He is standing at the business end of his girlfriend having her dress pulled up and a transvaginal ultrasound wand inserted into her and the technician's off in the side and somebody, or maybe it's just auto set up and he's taking the photos.

1:27Otherwise, somebody's in the room with them taking a photo from her head towards him. We're going to talk about endometriosis in this episode, but I do just want to acknowledge that this is not how we do things in medicine. He should be up by her head. He should be holding her hand. There's some big problems when it comes to getting diagnosed with endometriosis. I think his posts highlight some of these things. So I want to get into what would I do differently now, knowing what I know now, if I was beginning my journey like Kate is to discover whether or not I have endometriosis. Welcome back to the Dr.

2:01Brighton Show. I'm your host, Dr. Jolene Brighton. I'm board certified in Aspatic Endocrinology. I am a Menopause Society certified practitioner. I am also a nutrition scientist, a sex counselor, and have endometriosis and adenomyosis. Now, in Brian Johnson's post, he said, women are spending seven to 10 years living with this disease, and that is not true at all. False. What is actually going on is that it's taking 7 to 10 years on average for a woman to get diagnosed when she first makes that visit to her doctor saying something's not right here. And then she proceeds to get dismissed. But many women are not starting their period, going straight to their doctor saying period pain is not normal.

2:43Please help me work this up. So many women are living with endometriosis far longer than 7 to 10 years. And 7 to 10 years is an average. And what happens with the averages, friend? Some people get diagnosed sooner, especially if you alert your provider that you might want to have a baby, then you tend to get diagnosed sooner. They'll work you up a lot faster. But some women are going even longer than 10 years. And so while I appreciate him trying to raise awareness, I just want to clarify that aspect of endometriosis because we don't live with it for just a decade. Sometimes we live with it for decades before a friend says, girl, that's not normal.

3:20You need to get that worked up. Or we try to get pregnant. We're unable to get pregnant. And then we finally start the journey of trying to figure out why we're infertile. Because not being able to have a baby doesn't guarantee that you'll get your endometriosis diagnosis either. Now, if you're like, what the hell is endometriosis? What is this thing we're talking about? Great. I'm so glad you asked. Endometriosis is a full body that means systemic inflammatory condition that affects every single organ in your body. We see estimates of anywhere from 20, 40, maybe even 60 % higher increased risk of cardiovascular disease, stroke, blood clots, because you have endometriosis, especially in those under 40.

4:02Why do I share that stat with you? Because that tells us that it is not just happening in the lady parts like medicine tries to tell us it is. Endometriosis can be found anywhere in the body. How do we get endometriosis? Also a great question. Science. Could you catch up and answer that for us. But our best explanation right now is embryological rest theory. That is, when you are developing in your mom's womb, you are a little baby growing, cells that should make up your reproductive tract migrate elsewhere and implant. This is why we can find endometriosis in men. This is why we find endometriosis in fetuses via autopsy.

4:43This is why someone who isn't born with a uterus can have endometriosis. This is also why we find endometriosis before you ever get your period in some people. You don't have to have a period to get endometriosis, but classically, because estrogen fuels endometriosis, when you hit puberty, which by the way is not starting with a period, also something a lot of people and doctors get wrong, puberty is going to start for most women with breast blood development. That's the rise in the onset of estrogen. Maybe your symptoms look like gastrointestinal symptoms. Your doctor's like, maybe they have IBS.

5:17They're having stomach cramps all the time. We don't know what's going on here. And as it is, it's endometriosis brewing. It's only once we get our period that then people start to recognize that maybe that could be endometriosis. But spoiler, endometriosis is more than period pain. In fact, a good portion of women never even experience period pain. They have what's called silent endometriosis, but the only thing silent about it is the doctors who were silencing us because the symptoms are there. Anxiety, fatigue, maybe gastrointestinal symptoms. There are other symptoms of endometriosis that extend beyond pain.

5:51Now, if I was new to this journey, what would I do? Because maybe you're new to this journey and I definitely want to help you. First thing I would do is I would write down all of my symptoms and I would start tracking everything. Not just what happens at my period, not just how many days I bleed. I mean every single day, one cycle, super annoying, I know, go through and track everything. How do you feel when your period starts? How is your mood, your energy, your appetite? How is the pain? Of course, right? Are we having pain outside of that window? How are you around ovulation or just before your period?

6:25Do you have flu-like symptoms? Endometriosis, lesions tend to be rich in mast cells. Mast cells dump the histamine. Estrogen propagates those mast cells to dump histamine. Histamine then hits the ovaries causes more estrogen production. So I really mean it when I say all of your symptoms. Even if you think these things are normal, you've experienced your whole life, I would write those down. Now these endometriosis lesions, they are not the lining of your uterus. Just because they were derived from what would have become your reproductive tract, this happened when they were stem cells. So they differentiated in a way that made them endometrial cell-like, but not the endometrium.

7:04Not the same. We do not see the endometrium creating its own estrogen. We do not see the endometrium being a highly inflammatory organ, completely wrecking your life, causing endobrain, cardiovascular changes, fatigue. We don't see that happening. So these cells are distinct. That's why we have to track all of the symptoms, especially if you have cyclical things like, wow, I have like shoulder pain that's happening in my right shoulder cyclically. That could be a sign of diaphragmatic endometriosis, which isn't incredibly common, but it should just be on our radar just in case because just because something's not common doesn't mean that it's not happening to you.

7:46So in Brian Johnson's post, he points out they're going a non-invasive way. I don't mind him being on the journey with her, but I want to make sure that we are centering Kate in this journey because this is Kate's journey. This is not his journey. I appreciate I'm using the platform to raise awareness, but I'm already starting to see men kind of pick up a narrative where I'm like, nah, you know, this is not about Brian Johnson. Okay. This is about Kate. We know it's important that you have a partner who supports you in endometriosis care. You have better outcomes. So I ain't hating on that. I just want to be clear.

8:18I know some of you were like, can he like get out of the picture? Like literally get out of the picture. And I hear you. And at the same time, you know, we are not in their relationship dynamic, but I did. breasts. So what he said in his post, MRI, transvaginal ultrasound, and that historically endometriosis needed to be diagnosed via laparoscopy. And that is entirely true. And it may still need to be diagnosed via laparoscopy because we have limitations in imaging. And the limitations is the person who's doing the imaging. Because we do know that even superficial or peritoneal endometriosis can be seen by experts in imaging.

9:00Those experts are few and far between. So let's talk about imaging, but first I need you to understand the three types of endometriosis. So number one is endometriomas. Absolutely the easiest type of endometriosis to find. Endometriomas are endometriosis of the ovaries. Very easy to see on imaging. If you see this on imaging. Every expert I've ever interviewed on the Dr. Brighton show says, if there's an endometrioma, there is deep infiltrating endometriosis until proven otherwise. Do not let someone operate on you to just address the endometrioma without working you up and seeing, is there more endometriosis?

9:38Because odds are very high there is. So that's the second type of endometriosis, deep infiltrating endometriosis. That's when there's organ involvement. It is much deeper. The superficial or peritoneal, that's our third type. That's happening on the surface layer. That can be seen via ultrasound and MRI if you've got the right systems, the right equipment, the right people on the case. But if you don't, and that is what is more common, then you would require laparoscopy to be able to diagnose that. It is not enough to have just a transvaginal ultrasound. You often are going to need, if you're not going the MRI route, You're also going to need an abdominal ultrasound.

10:19You have to map so much more than just the pelvic organs. This is not a pelvic organ disease. Does it show up statistically more prevalent in the pelvic cavity? Yes. But that doesn't mean that we ignore all the other cases of endometriosis that can show up elsewhere. So when it comes to imaging, there's MRI and there's ultrasound. If you're getting an ultrasound, one big red flag that I saw in Brian Johnson's post is that he was like, we're with the tech. Why is that a red flag for me? Because that tech, that ultrasound tech, that person's skill is going to determine the quality of the images.

10:59Those images are then going to go to a radiologist. The radiologist is then going to read that. Are any of these people experts in endometriosis? There's no way to know. Some of my comments said, oh, well, if they have an endometriosis protocol, then that's a safe bet. No, it's not. No, it is not. I went to an imaging center that had an endometriosis protocol and like radiologist says to me, no endometriosis here, no adenomyosis. I'm like, I can literally see the adenomyosis. Okay. I can see it. This is not my job. This is not what I do. This is what you do. I take that same exact imaging. Well, actually I asked for a second opinion first.

11:35He says to me, well, he says to my doctor, she's just like, you know, attention seeking. What? my doctor's like I can't even believe this I send it to a radiologist who knows endo radiologist is like girl so much endo so much endo and I was diagnosed with stage four which means absolutely nothing I know I'm gonna get some hate for that staging and endometriosis means like absolutely nothing these days we have much better things I'm gonna talk to you about those but why do I say staging means nothing you could have stage one and be in the worst pain of your life and not be able to get pregnant.

12:09You could have stage four, easily get pregnant, and have no pain whatsoever. Like this staging doesn't tell us anything and it doesn't help plan the surgery because this only comes after you've been cut open. So staging, not really worth it. What is more beneficial is getting an Enzian score. E-N-Z-I-A-N, Enzian score. I will link the research so that you can share that with your doctor. So there's the ultrasound. There's MRI. I think a gel MRI is the best route to go when it's available. It's not fun. I've had it. It sucks. I took scopolamine because having your rectum filled with gel, not a good time.

12:54But they're going to fill the rectum and the vagina with gel. It's going to expand the tissue. Your vagina is kind of like an accordion. Like it can expand, right? A human passes through that. So expanding the tissue can help you visualize more and get a better idea of what is actually happening in the pelvic cavity. Now, once the imaging is done, it needs to be sent to a radiologist who actually understands endometriosis, does this day in and day out, reading endometriosis studies. There are surgeons who can also read it, very qualified endometriosis surgeons. But if you're going to send that out to a radiologist, it's one who does an ENZ and score.

13:34So ask that question. Why do we want an ENZN score? It's going to give us location, size, and depth of endometriosis. It's going to tell us it's on the peritoneum. It's in the ovary. It's on the rectum. Like we're going to know where this endometriosis is, how deep it's going. This is very important for surgical planning. And we are going to understand how large it is as well. That is all very important for making sure you have the right surgical team if you're going to go the surgical route and making sure that you plan your life accordingly. If your periods knock you out, if sex is painful, if you're told your scans are normal but your pain isn't, listen up.

14:17That's not something you have to just live with. Endometriosis is often missed, misdiagnosed, or managed without a full evaluation of what's actually happening. Endoglobal specializes in advanced endometriosis review, including imaging assessment, multidisciplinary evaluation, and excision-focused surgical planning. They offer affordable options and a complimentary consultation to review your case and determine whether surgery is even right for you. If you're tired of guessing or gaslighting, start with answers. Go to drbrighton.com slash endoglobal to schedule your complimentary consultation.

15:03That's d-r-b-r-i-g-h-t-e-n dot com slash e-n-d-o-g-l-o-b-a-l. Getting into surgery and not knowing that you're going to have a bowel resection until you wake up, that is worst case scenario. That happens sometimes, but the ideal is that you have an informed consent that helps you prep for all of that. Now, getting an ultrasound done, I'm not saying a tech can't do an ultrasound. What I'm saying is that not every tech is actually going to be trained in endometriosis and not every radiologist is going to be trained in endometriosis or have that skill level. It is not uncommon for women to be told their MRI and their ultrasound showed absolutely no endometriosis.

15:51And then they have surgery and they had bilateral endometriomas. They had deep infiltrating endometriosis. Their bowel was tethered to their uterus. Now, when it comes to transvaginal ultrasound, you know, a better route to go, in my opinion, is to go to the surgical center, a center of endometriosis excellence, where you can have that done by the surgeon who would perform your surgery. They're going to do it either way. And, you know, in medicine, we're always like transvaginal ultrasound is not invasive. I'm sorry. Like, it is very invasive to have a wand in your vagina. That is invasive. But I want you to understand why we say that in medicine is because on the spectrum of like cutting you open versus an ultrasound wand, that is least invasive.

16:40But to you, it's still invasive. Okay, so I just want to acknowledge that. So if you're going to get a transvaginal ultrasound, going just one time to the center of excellence, having that done, having them take a look and see, okay, is there endometriosis here? They're going to be much better at it because this is all they do day in and day out. But it's not always just endometriosis, which is also another reason why we want to have imaging first. So we want to have imaging because as Dr. Abram-Cabrera always says, it's not optional. It's mandatory for surgical planning. You cannot confidently plan someone's surgery for endometriosis unless you do imaging first.

17:19But also, it may not just be endometriosis. There could be fibroids present. There could be vascular disease taking place. We want to make sure that you always get like a one and done surgery if possible. We don't want you having to have multiple surgeries like many women with endometriosis have had to have. So if I was starting this journey again, I would go the route of going to a center of excellence. I would get a transvaginal ultrasound from them. I would also follow up with an MRI if that was within my means, or I would get an abdominal ultrasound. I would send that out to a radiologist.

17:55I would ask, you know, can I get an ENZION score for this? Is this something that you do? Get that ENZION score and then be able to see where all of that endometriosis is. Now, I wouldn't stop there either. I would also do the nutrition and lifestyle practices I've talked about on this podcast, and I will link to episodes about that. But briefly, I would make sure that I was lifting weights two to four times a week, depending on the routine. Cardiovascular activity happening almost every single day. Why? Because no matter how much pain I'm in, I don't want to be living through a heart attack. And given that that's the number one killer of women, endometriosis increasing that risk, I want to do everything that I can.

18:40I safeguard my sleep. Oh my God, I wish I could have told my teenage self this. Safeguard your sleep. The less sleep you get, the less you can manage your pain. And to the people who are like, I'm in too much pain to exercise, try to do something. I know how bad endometriosis pain can be. You guys have seen my videos I've shared on social media where like, it's like labor. I was on a radio show recently and they were asking me like, how bad is the pain really of endometriosis? And I'm like, well, as somebody who has had two unmedicated births, I would put it up there with child labor. Is it like the full intensity?

19:13Like we get to the end of the race of shallow labor? No. But I, you know, have had flares where I'm breathing like I'm in labor. So, you know, there's the nutrition, the lifestyle aspect, movement, even when you hurt. If you go to drbrighton.com slash endo flare, I also give you a protocol on using a TENS unit, on using, I do give you the nutrition aspects, but I also give you tools to get out of flares. So how can I get myself out of a flare when I'm in it? I would definitely have those things on hand. And then I would shop around for my surgeon. So even if I went to a center of excellence and I thought like, yeah, these people are the best, and I did this, I would still get two other opinions and just be certain that I was making the best decision and finding the best surgical team.

20:04As Dr. Melissa McHale has said on the Dr. Brighton show, once that bell has been rung, you can't unring it. That means that once that surgery has been done, you can't undo what's been done. And there are too many cases of women with endometriosis seeing a minimally invasive gynecological surgeon who is like, I do endo, but they don't really do endo. They're minimally invasive surgeon. That's great. But they're seeing a handful of endo cases a year. And sometimes they cause more harm, not intentionally. It's not intentional. They're absolutely trying to do right by you. The other thing that I would do as part of my care is I would be asking, do you follow the ESHRE guidelines?

20:45E-S-H-R-E. These guidelines and then some of the guidelines they have in Latin America and then also like Brazil's imaging guidelines, they are leading the world. These are the ones that we want to be following. So that's a question I would also ask a provider. So we'd be asking about the Enzian score. We'd be asking about the Escher guidelines. We would be asking about what is their long-term strategy here. So, you know, one of the things that doctors will sometimes recommend is just staying on hormonal suppression. So on my endo journey, I would never have done Lupron. I would have never done it, especially when Dr.

21:22Cindy Mossbrocker broke the research on me that shows that women may never recover. their estrogen levels, their ovarian function may never recover after that. So GnRH agonists is not something that I would ever do. And I would reserve that for absolutely worst case scenario. I also look back at like how my doctors only ever gave me the pill. I wouldn't have accepted that as an answer. And that was part of my delay is because I was given the pill instead of a workup. And even when the pill didn't work for my pain, I was told it was the best medicine had and just take NSAIDs and welcome to being a woman.

21:58So I would have definitely went back and done things differently. And I probably would have had surgery much, much younger. But in this conversation, the absolute place I would start getting the best imaging, understand the best surgical team, it doesn't mean you have to have surgery, but you always want to find the right people before you absolutely are in dire need of the right people. So what I mean by that is that it's better, and I always do this with patients, let's find you the surgeon that you think you would work with. You don't have to have surgery, but if things get really bad and you feel really desperate, we already know who you're going to.

22:34We're not playing the game then of like, I'm so desperate, I'll literally take anyone who's willing to get in there and cut some stuff out. I never want someone to be in that position. Now, a really important message in this podcast that I need you to walk away with is not everybody who says they're an endometriosis expert is actually an endometriosis expert. And, you know, just recently I had someone in my comments on Instagram saying she was an endometriosis expert. However, she made very disturbing comments telling women that retrograde menstruation is a cause of endometriosis. We know that's not true.

23:0890 % of women have retrograde menstruation. 10 % of them have endometriosis. Math ain't math and girly. The other thing that she was saying is that she does believe it's the endometrium. She does believe it's just the endometrium. No one who's staying on top of the research with endometriosis would ever say they believe that endometriosis is the endometrium. Why? Because retrograde menstruation and the endometrium being outside the uterus was debunked like 25 years ago. Like we're talking about several generations of medical school students, okay, that have gone through school since we've debunked all of that in the research.

23:48And yet there are still doctors out there saying, I'm an expert and the best treatment for endometriosis is the pill. That's not a treatment for endometriosis. That is a symptom management tool that we can leverage. Just like NSAIDs are a symptom management tool, just like, you know, anti-inflammatory diet is a symptom management tool. But endometriosis, for it to be truly treated, needs to be excised and needs to be removed. But that doesn't mean that you have to have surgery in every single case. We always want to weigh the risk versus benefit. So going back to Kate Tolo, Brian Johnson kind of saga, I do appreciate that they're being very transparent in sharing all of this about her journey.

24:35I do think it helps people to see that. I do hope that it is always her choice to share these things because endometriosis gets very personal very quickly. Something he said in his post I think is really important as well is that imaging can rule in endometriosis. It can never rule out endometriosis. So if your imaging is ever normal and your doctor says you don't have endometriosis, I think we've established that that may be more about the skill of the person interpreting it or doing the imaging than it is actually about you having endometriosis. So as we close this out, I will say that Kate has posted saying that she loves how supportive he is.

25:18And if that's what's going on, then I truly love that for her because I think it is so, so vital that we have support. And if you don't have someone in your life to support you and you have endometriosis or you suspect endometriosis, then I certainly hope that you can find a patient advocate or social worker, someone along those lines to partner with so that you do have that level of support. Endometriosis is not an easy road and there is never an end to this road. You know, even getting surgery, there are some people who promise like just have surgery and that's going to be it. That is never it.

25:49in fact surgery is often just the beginning of another part of this journey thank you as always for being here with me if you can take a moment like comment subscribe show this show some love share it to the people who need it most that is something i would appreciate so much i know it seems like a little thing for you to do but it is a tremendous thing in the world of the online space and the internet in helping support my efforts my team's efforts and the dr brighton show. So thank you. And I will see you next time.