I’m hosting a live PMDD Relief Workshop on June 10th, free when you pre-order ADHD and Women. Get your spot at https://drbrighten.com/pmdd
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.