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Have you been told your ultrasound or MRI was “normal” — but you know something is deeply wrong with your body?
You're not imagining it. You're not being dramatic. And you're not alone.
I have been exactly where you are. A radiologist at an imaging center that advertised an “endometriosis protocol” looked at my scans, told me I had no endometriosis and no adenomyosis, and called me “attention-seeking” to my referring doctor. I got a second opinion from a radiologist who actually reads endometriosis studies every day. Her response: “Girl, so much endo.” I had stage four.
That experience — being dismissed while living with a disease that I now know can produce pain on par with unmedicated childbirth — is why I recorded this episode. It was prompted by a viral social media post from Bryan Johnson about his girlfriend Kate Tollo getting an endometriosis workup. The post included a photo of Johnson at the “business end” of the exam table while Tollo underwent a transvaginal ultrasound, her dress pulled up, positioned to observe the procedure rather than at her head offering comfort. The image sparked widespread reaction, and I want to use it as a teaching moment.
This episode is about what proper endometriosis imaging and diagnosis actually require — and why most women are being failed at every step.
What You'll Learn in This Episode
- Why “normal imaging” can never rule out endometriosis — and what gets missed on scans read by general radiologists
- The three types of endometriosis and which ones imaging can actually detect (and which ones it usually can't)
- What an ENZIAN score is and why it matters far more than the I–IV staging system
- Why I–IV staging tells you “absolutely nothing” about how much pain you'll be in or how the disease is affecting your fertility
- The surprising data suggesting endometriosis may increase cardiovascular disease risk by 20–60%
- Why the retrograde menstruation theory was debunked roughly 25 years ago — 90% of women have retrograde menstruation, only 10% have endometriosis
- What “silent endometriosis” really means — and the symptoms that have nothing to do with your period
- Why endometriosis lesions are not the same as your uterine lining and create their own estrogen
- The mast cell / histamine / estrogen feedback loop that drives inflammation
- How to vet your radiologist and why an “endometriosis protocol” label at an imaging center is not a guarantee
- The ideal imaging sequence that gives you the best chance of an accurate diagnosis before surgery
- Why the birth control pill and Lupron are symptom management tools — not treatment
- What gel MRI is, what it shows, and what it actually feels like (I've had it — it's not fun)
- My own misdiagnosis story: dismissed as “attention-seeking,” later diagnosed with stage four endometriosis
- How to find a surgeon who performs excision regularly and follows ESHRE guidelines
- Why pre-surgical imaging with ENZIAN scoring should be mandatory — not optional
- Why endometriosis is a full-body systemic disease, not a pelvic problem
- Questions to ask your radiologist and surgeon before anyone makes an incision
Why Most Endometriosis Imaging Gets It Wrong
The Problem Isn't the Machine — It's Who's Reading the Scan
Most women assume that when they get an ultrasound or MRI, the person reading it knows what to look for. That assumption is wrong — and it's costing women years of their lives.
Endometriosis lesions can be subtle. Superficial peritoneal endometriosis — the kind that sits on the surface layer of the pelvic cavity — can be seen by expert imagers, but those experts are few and far between. Most radiologists are generalists. They're looking for obvious masses, not the faint, scattered lesions characteristic of endometriosis. They haven't been trained to map the disease the way an endometriosis-specialized radiologist can.
This isn't about the quality of the machine. It's about the expertise behind the eyes looking at your images. The same scan, sent to two different radiologists, can produce two completely different reports.
“Normal” Imaging and the Decades-Long Diagnostic Delay
Bryan Johnson's post stated that women live with endometriosis for 7–10 years. That's not quite right. What actually happens is that it takes 7–10 years on average for a woman to get diagnosed after she first visits her doctor saying something is wrong — and then she proceeds to get dismissed, over and over.
Many women live with the disease far longer. Decades.
The diagnostic delay gets shorter for one specific group: women who say they want to conceive. The system mobilizes when fertility is on the line. If you're not trying to get pregnant? Your pain is more likely to be labeled IBS, anxiety, or “just bad periods.”
It's not uncommon for a woman to be told her MRI and ultrasound showed absolutely no endometriosis — and then have surgery that reveals bilateral endometriomas, deep infiltrating endometriosis, and bowel tethered to her uterus. I hear this story constantly.
My Story: Dismissed as “Attention-Seeking” with Stage 4 Endometriosis
I went to an imaging center that advertised an endometriosis protocol. I felt relieved — finally, someone who would know what they were looking at.
The radiologist told my doctor there was no endometriosis and no adenomyosis. Then he added that I was “attention-seeking.”
I could literally see the adenomyosis on my own scan.
I got a second opinion from a radiologist who reads endometriosis imaging studies day in and day out. She confirmed what I already knew: extensive disease. Stage four.
That experience taught me something I now say in every conversation about endometriosis diagnosis: not everybody who says they're an endometriosis expert is actually an endometriosis expert. You have to vet the person reading your scans just as carefully as you vet your surgeon.
The Three Types of Endometriosis — and What Imaging Can (and Can't) See
Understanding which type of endometriosis you're dealing with changes everything about how your imaging should be approached — and what a “negative” result actually tells you.
Endometriomas: The Ovarian Cysts That Signal Deep Disease
Endometriomas are endometriosis of the ovaries. Very easy to see on imaging.
But here's what matters: every expert I've ever interviewed on this show has told me the same thing. If there's an endometrioma on your scan, there is deep infiltrating endometriosis until proven otherwise.
An endometrioma is not an isolated finding. It's a signal that endometriosis has invaded deeply. If your scan shows one, your workup is not done — you need to find out where else the disease has traveled.
Deep Infiltrating Endometriosis: When Organs Are Involved
Deep infiltrating endometriosis — or DIE — is exactly what it sounds like. Lesions involve organs deeply and can involve the bowel and bladder.
With a skilled sonographer and the right protocol, DIE can be visualized on transvaginal ultrasound. With gel MRI — where the rectum and vagina are filled with gel to expand the tissue — it can be mapped in even greater detail. This mapping is critical for surgical planning. You do not want to wake up from surgery and learn for the first time that you needed a bowel resection.
Superficial/Peritoneal Endometriosis: Why Expert Eyes Matter
Superficial peritoneal endometriosis sits on the surface layer of the pelvic cavity. It does not penetrate deeply, and it does not form cysts.
This type can be seen by expert imagers — but those experts are rare.
Most general radiologists will miss it entirely. This is one of the most common explanations for the “normal imaging” result that so many women receive. The disease is there. The eyes reading the scan didn't know how to find it.
ENZIAN Score vs. Staging: What Actually Helps Your Surgeon Plan
Why I–IV Staging Tells You Almost Nothing
Here's something that shocks most women when they first hear it: endometriosis staging — the I through IV system — means almost nothing clinically.
You could have stage one endometriosis and be in the worst pain of your life, unable to conceive. You could have stage four, get pregnant easily, and experience no symptoms whatsoever.
Staging doesn't predict pain. It doesn't predict fertility. And it doesn't help your surgeon plan the procedure because staging is assigned after they've already cut you open.
A staging number tells you what was seen during surgery. It gives you nothing before.
How the ENZIAN Score Maps Location, Size, and Depth
The ENZIAN score is different. It provides a map: the location, size, and depth of endometriosis lesions before anyone makes an incision.
This is what your surgeon actually needs. A surgeon walking into the operating room with an ENZIAN score knows where to look, how deep the lesions go, and which organs may be involved. That information shapes the surgical plan, the surgical team, and the informed consent conversation you deserve to have beforehand.
I want every woman listening to understand this: you have the right to ask for ENZIAN-scored imaging. You have the right to send your images to a radiologist who provides ENZIAN classification. And you should not accept surgery without it.
What Proper Endometriosis Imaging Actually Looks Like
The Ideal Imaging Sequence: Transvaginal Ultrasound → MRI → Expert Read
The pathway I recommend starts with a transvaginal ultrasound at a center of endometriosis excellence — ideally performed by the surgeon who would operate on you.
Transvaginal ultrasound can identify endometriomas, signs of deep infiltrating disease, and adenomyosis. But it must be done with an endometriosis lens. The sonographer needs to look beyond the uterus and ovaries.
Endometriosis is not a pelvic organ disease, and mapping it requires surveying far more than the reproductive tract. In many cases, both a transvaginal and an abdominal ultrasound are necessary.
From there, MRI — and ideally gel MRI — provides additional detail, particularly for deep infiltrating disease and bowel involvement.
Then, and this is the step most women miss: send every image to a radiologist who reads endometriosis studies every single day. Request ENZIAN scoring. Do not accept the report from the general radiologist at the imaging center unless they can demonstrate genuine expertise in endometriosis.
Gel MRI: What It Is, What It Shows, and What It Feels Like
Gel MRI involves filling the rectum and vagina with gel before the scan. The gel expands the tissue, creating separation between organs and making deep infiltrating lesions far more visible.
I've had it. It's not fun. It's uncomfortable, and I want to be honest about that. But it provides the most detailed map of deep disease currently available in imaging.
If your symptoms suggest bowel or bladder involvement, or if a standard ultrasound showed an endometrioma, gel MRI can give your surgeon the information they need to plan a safe, thorough excision — without surprises.
How to Find a Radiologist Who Reads Endometriosis Studies Every Day
You find this person the same way you find your surgeon: you ask. Specifically, you ask your surgeon who they send their imaging to. High-volume endometriosis surgeons work with dedicated endometriosis radiologists. They know who provides ENZIAN scores and who doesn't.
You can also seek a second read. Take your existing imaging to a center of endometriosis excellence and ask for an expert review. This is not an unreasonable request. This is standard of care for a disease that is routinely missed.
Endometriosis Is a Full-Body Disease — Not a Pelvic Problem
Cardiovascular Risk, Inflammation, and Why This Matters Beyond Your Period
If you've been told endometriosis is a pelvic condition, that framing is outdated — by decades.
Endometriosis is a full-body, systemic inflammatory disease. It affects every organ system. The inflammation doesn't stay in your pelvis.
Estimates suggest that women with endometriosis may face anywhere from a 20% to 60% increased risk of cardiovascular disease, stroke, and blood clots — especially those under 40. That's not a small association. That's a signal that the systemic inflammation driving this disease has consequences far beyond your periods.
This is why tracking all your symptoms matters — not just pelvic pain, but fatigue, brain fog, mood changes, GI issues, and anything that feels like flu-like inflammation.
Embryological Rest Theory: Why Endometriosis Can Occur Without a Uterus
The old explanation for endometriosis — retrograde menstruation, where menstrual blood flows backward through the fallopian tubes and implants in the pelvis — was debunked about 25 years ago. Ninety percent of women have retrograde menstruation. Only 10% have endometriosis. The math doesn't work.
Our best current explanation is the embryological rest theory. During fetal development, cells destined for the reproductive tract can migrate elsewhere in the body and implant. These cells lie dormant until puberty — specifically until the onset of estrogen production, which begins with breast bud development, not menstruation.
This is why endometriosis has been found in fetuses at autopsy. It explains why someone without a uterus can develop the disease. It explains rare findings in men.
Endometriosis is not caused by your period. The embryological rest theory — our best current explanation — suggests these lesions are established during fetal development.
The Mast Cell / Histamine / Estrogen Feedback Loop
The lesions themselves are not the lining of your uterus. They are distinct cells derived from embryonic stem cells — endometrial cell-like, but not the endometrium. And they create their own estrogen.
These lesions are rich in mast cells, which release histamine. Histamine stimulates the ovaries to produce more estrogen. More estrogen drives more mast cell propagation. It's a self-perpetuating feedback loop of inflammation, and it's one reason the disease persists and spreads.
Surgery, Suppression, and What “Treatment” Actually Means
Why Excision Is the Standard — and Why “One and Done” Should Be the Goal
True treatment for endometriosis requires excision — removing the lesions entirely.
The goal should be one and done surgery. That requires a surgeon who knows where every lesion is before they operate, which is why pre-surgical imaging with ENZIAN scoring is not optional — it's mandatory. It requires informed consent that covers every possible finding. You should know before surgery whether a bowel resection is on the table.
As Dr. Melissa McHale has said on this show: once that bell has been rung, you can't unring it. Surgery is irreversible. Get 2–3 opinions, even from a center of excellence. Shop for your surgeon.
And understand that surgery is often just the beginning of another phase of living with this disease. Endometriosis is not an easy road, and there is never an end to managing it.
The Pill, Lupron, and NSAIDs: Symptom Management, Not a Cure
I want to be clear about something that millions of women are never told: the birth control pill is not a treatment for endometriosis. It's a symptom management tool — like NSAIDs, like an anti-inflammatory diet. It can suppress symptoms for some people, and for some it doesn't help at all. But it does nothing to remove or resolve the lesions.
Lupron and other GnRH agonists carry additional risks. There is concern — and I first heard this from Dr. Cindy Mossbucker — that GnRH agonists may permanently impair ovarian function in some women. These medications shut down the hormonal communication between your brain and your ovaries. For some, the effects don't fully reverse.
I took Lupron. Knowing what I know now, I wouldn't do it again.
Managing symptoms matters. Suppression can improve quality of life. But don't confuse it with treatment. The lesions are still there.
Lifestyle Tools I Use Alongside Surgical Care
I integrate several tools alongside excision surgery and medical care. These aren't substitutes — they're what I use to support my body through the inflammatory reality of this disease:
- Weight training 2–4 times per week. Maintaining muscle mass supports metabolic health and reduces systemic inflammation.
- Cardio most days. Not aggressive — walking, cycling, whatever I can tolerate during flares.
- Protecting my sleep. Sleep disruption amplifies pain perception and inflammation.
- TENS unit for flares. When the pain spikes to that unmedicated childbirth level, a TENS unit can take the edge off.
- Anti-inflammatory nutrition. I have a free guide at drbrighten.com/endoflare with the foods and strategies I rely on when inflammation is high.
These tools don't cure endometriosis. Nothing does. But they help me live with it.
Links Mentioned in This Episode
Related Articles
- Signs Your Period Pain Isn't Normal
- Adenomyosis: Symptoms, Diagnosis, and Why It's Often Missed
- Inflammation and Women's Health: What to Know
- Understanding Pelvic Pain: Beyond the “Bad Period” Explanation
- Hormonal Birth Control: Benefits, Risks, and What to Ask Your Doctor
- Post-Birth Control Syndrome: What Happens When You Stop the Pill
Related Episodes
- Endometriosis Excision Surgery with Dr. Melissa McHale
- Pre-Surgical Imaging and Surgical Planning with Dr. Ron Cabrera
- Adenomyosis: Diagnosis, Symptoms, and Treatment Options
- The Mast Cell / Histamine / Estrogen Connection
Frequently Asked Questions
Absolutely yes. Imaging can rule in endometriosis — it can never rule it out. Superficial peritoneal endometriosis is especially difficult to detect, and most radiologists lack the specialized training to spot the subtle findings that an endometriosis expert would catch immediately. If your pain is real and your scan was “normal,” do not stop there.
A transvaginal ultrasound performed at a center of endometriosis excellence — ideally by the surgeon who would operate on you — followed by MRI when indicated, with all images sent to a radiologist who specializes in endometriosis and provides ENZIAN scoring. Gel MRI offers the most detailed view of deep infiltrating disease when bowel or bladder involvement is suspected.
The ENZIAN score maps the location, size, and depth of endometriosis lesions before surgery. Unlike the I–IV staging system — which gives you no information about what your surgeon will find and is assigned after the fact — ENZIAN gives your surgeon a roadmap. It tells them where to look, how deep the disease goes, and which organs may be involved.
Most imaging is performed and interpreted by clinicians who are not endometriosis specialists. Endometriosis lesions can be subtle, and superficial peritoneal disease is frequently invisible on scans read by general radiologists. The quality of the sonographer and the expertise of the radiologist matter more than the machine itself.
Look for a surgeon who performs excision surgery regularly, follows ESHRE guidelines, uses ENZIAN scoring for pre-surgical imaging, and works with dedicated endometriosis radiologists. Get 2–3 opinions — even from a center of excellence. Ask direct questions: “Do you use ENZIAN scoring?” “Who reads your endometriosis imaging?” “What is your long-term management strategy?”
Silent endometriosis refers to cases where the person has no classic period pain — but may experience anxiety, fatigue, GI symptoms, brain fog, and systemic inflammation. I often say the only thing silent about it is the doctors who are silencing us, because the symptoms are there. You don't need painful periods to have endometriosis.
No. The pill can manage symptoms for some people, but it does not treat or remove endometriosis lesions. True treatment requires surgical excision. The pill is a symptom management tool — like NSAIDs or an anti-inflammatory diet — not a cure. If you've been on the pill for years and you're still in pain, the lesions are still there.
Dr. Jolene Brighten is a board-certified naturopathic endocrinologist, a Fellow of the American Board of Naturopathic Endocrinology (FABNE), a Menopause Society Certified Practitioner (MSCP), a nutrition scientist, and a certified sex counselor through the Sexual Health Alliance. As a licensed physician maintaining an active DEA license and full prescriptive authority, her educational frameworks align with leading global standards, including ESHRE and The Menopause Society. She serves as a faculty member for the American Academy of Anti-Aging Medicine (A4M), acts as the Lead Researcher for the Brighten Essentials Research Division, and is currently directing ongoing scientific research initiatives to advance clinical care standards for women navigating complex endocrinology, neurodivergence, and tissue-specific hormone sensitivities.
Transcript
Dr. Brighten: [00:00:00] Bryan Johnson's girlfriend, Kate Tollo, may have endometriosis. And your guys' first question was, what the heck is going on in this photo? 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 to the side. And somebody, or, or maybe it's just auto-set up and he's taking the photos. Otherwise, somebody's in the room with them, taking the photo from her head towards him.
We're gonna talk about endometriosis in this episode, but I do just wanna 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 are some big problems when it comes to getting diagnosed with endometriosis.
I think his post highlights some of these things. So I wanna get into what would [00:01:00] 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. Brighten Show. I'm your host, Dr. Jolene Brighten. I'm board certified in obstetrics and gynecology. I am a Menopause Society certified practitioner. I am also a nutrition scientist, a sex counselor, and have endometriosis and adenomyosis. Now, in Bryan 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 seven 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's not normal.
Please help me work this out." So many women are living with endometriosis far longer than seven to 10 years, and seven to 10 years [00:02:00] is an average. And what happens with averages, friend? Some people get diagnosed sooner, especially if you alert your provider that you might wanna 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 wanna 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.
You 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 you 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 [00:03:00] from 20, 40, maybe even 60% higher increased risk of cardiovascular disease, stroke, blood clots because you have endometriosis, especially in those under 40.
Why do I share that stat with you? 'Cause 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 were developing in your mom's womb, you were 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. This is why someone who isn't born with a uterus can have endometriosis.
This is also why we find endometriosis before you [00:04:00] 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 gonna start for most women with breast bud 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." They'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 are silencing us because the symptoms are there. Anxiety, fatigue, maybe gastrointestinal symptoms. There are other symptoms of endometriosis that extend beyond [00:05:00] pain.
Now, if I was new to this journey What would I do? 'Cause maybe you're new to this journey, and I definitely wanna 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 i- is the pain? Of course, right? Are we having pain outside of that window? How are you around ovulation or just before your period? Do you have flu-like symptoms? Endometriosis lesions tend to be rich in mast cells.
Mast cells dump 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 it your whole life, I would write those down.
Now, these endometriosis lesions, they are not the lining of your [00:06:00] 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. Not 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 they're 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
So in Brian Johnson's post, he points out they're going a non-va-invasive way. [00:07:00] I don't mind him being on the journey with her, but I wanna make sure that we are centering Kate in this journey, 'cause this is Kate's journey. This is not his journey. Appreciate him 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 when you have a partner who supports you in endometriosis care, you have better outcomes. So I am hating on that. I just wanna be clear. I know some of you are 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 digress. 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. [00:08:00] Because we do know that even superficial or peritoneal endometriosis can be seen by experts in imaging. Those 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. Brighten 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, because 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 [00:09:00] 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. You 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 of 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, "Where was the tech?" Why is that a red flag for me?
[00:10:00] Because that tech, that ultrasound tech, that person's skill is going to determine the quality of the images. Those images are then gonna 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 you c- 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 s- second opinion first. He 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 [00:11:00] absolutely nothing.
I know I'm gonna get some hate for that. Staging an 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.
You 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 [00:12:00] scopolamine because having your rectum filled with gel, not a good time. But they're gonna fill the rectum and the vagina with gel.
It's gonna expand the tissue. Your vagina's kinda like an accordion. Like it, 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 you're gonna send that out to a radiologist, it's one who does an ENZIAN score.
So ask that question. Why do we want an ENZIAN score? It's gonna 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 gonna know where this [00:13:00] 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 gonna go the surgical route and making sure that you plan your life accordingly. Getting into surgery and not knowing that you're gonna 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 gonna be trained in endometriosis, and not every radiologist is gonna 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.
And then they have surgery, and they had bilateral endometriomas. They had deep [00:14:00] infiltrating endometriosis. Their bowel was tethered to their uterus.
Now, when it comes to a transvaginal ultrasound, you, you know, and a better w- 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 gonna 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. But to you, it's still invasive. Okay? So I just wanna acknowledge that.
So if you're gonna get a transvaginal ultrasound, going just one time to center of excellence, having that done, having them take a look and see, okay, is there endometriosis here? They're gonna be much better at it [00:15:00] 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 wanna have imaging first.
So we wanna have imaging because, as Dr. Ron 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. But also, it may not just be endometriosis There could be fibroids present. There could be vascular disease taking place.
Like, we wanna 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 in- within my means, or I would get an abdominal ultrasound. I would send that out to a radiologist. I would ask, [00:16:00] you know, "Can I get an Enzian score for this? Is this something that you do?" Get that Enzian 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 wanna, I don't wanna be living with- through a heart attack, and given that that's the number one killer of women, endometriosis increasing that risk, I wanna do everything that I can. I safeguard my sleep. Oh my God, I wish I could've 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 [00:17:00] 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, like we get to the end of the race with child 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 drbrighten.com/endoflare, I also give you a protocol on using a TENS unit, on using, um... I, I do give you the nutrition aspects, but I also, uh, 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 [00:18:00] other opinions and just be certain that I was making the best decision and finding the best surgical team.
As Dr. Melissa McHale has said on The Dr. Brighten Show, once that bell has been rung, you can't unring it. That means that once that surgery's 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 a 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. This is 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?"
E-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. [00:19:00] 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 NZ score. We'd be asking about the ASTRO 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. Cindy Mossbucker 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 agonist 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 [00:20:00] being a woman. So 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, understanding 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. We'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."
Like 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 [00:21:00] endometriosis expert.
However, she made very disturbing comments, telling women that, um, retrograde menstruation is a cause of endometriosis. We know that's not true. Ninety percent of women have metre- retrograde menstruation. Ten percent of them have endometriosis.
Math ain't mathing, 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, uh, endometrium being outside the uterus was debunked, like, twenty-five 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, and 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 [00:22:00] management tool that we can leverage, just like NSAIDs are a symptom management tool, just like, you know, an anti-inflammatory diet is a, 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. I 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 [00:23:00] 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, and 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. Uh, you know, even getting surgery, there are some people who promise, like, just have surgery, and that's gonna be it. That is never it. In fact, surgery is often just the beginning of another part of this journey. Thank you as always for being [00:24:00] 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, uh, the online space and the internet in helping support my efforts, my team's efforts, and The Dr.
Brighten Show. So thank you, and I will see you next time.
