Doctor Reacts to Lili Reinhart and Breaks the Endometriosis Diagnosis Myth | Dr. Jolene Brighten

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0:42Gemini and Chrome is here for it. Ready to make anything online make sense? There's no place like Chrome. Check responses set up required. Compatibility and availability varies 18+. Endometriosis isn't rare. What's rare is getting taken seriously, and that is usually until you know exactly what to say. If you didn't catch the news, Lily Reinhart just joined a long list of celebrities who have been diagnosed with endometriosis. She recently shared that she was finally diagnosed after years of being misdiagnosed, dismissed, and told to just manage her symptoms. In fact, in her post, she highlighted three hospital visits, multiple urologists and gynecologists, and not one of them seriously considered endometriosis as the underlying cause of what I was experiencing.

1:29And here is what hits me the hardest. If this can happen to someone with resources, visibility, influence, imagine what happens to the average person who doesn't have time, money, energy, or other resources to push back and to keep following through with visit after visit. And listen, when a celebrity gets diagnosed with endo, it's headlines everywhere, but for about the 200 million women worldwide with endometriosis, the attitude is more like, well, that's just part of being a woman. And so I want to acknowledge that because I've heard from the endo community, it's sometimes frustrating to see the world lose their mind when a celebrity gets diagnosed with endometriosis, but then act like, you know, 200 million of us don't even exist.

2:15And to be fair to Lily, she is an actor. So I can only imagine the doctors who were like, yes, nice show. Oh, I'm sure you're in pain and dismissing her. This is the hundredth episode of the Dr. Brighton show. And I started this as an effort to put the medicine in your hands and help you understand your body while also giving you tools that you need to thrive and to heal yourself. So, hey listen, leave me a review if this show has helped you in any way, but I feel like this is the perfect episode for number 100 because we're going to talk about endometriosis. And when it comes to endometriosis, this is not about one doctor being bad.

2:54It's about an entire system where endometriosis is under-recognized, completely dismissed, symptoms get minimized, pain's just normal. That's the way it is. And people get balanced between specialties. that is if they even get a referral. And if you've been with me for a minute here, you know I've walked this road personally and professionally. So I'm going to give you a practical plan today. Because if I can go 29 years not getting diagnosed and I'm a medical professional and they're dismissing medical professionals and people with significant influence, like listen, none of us are being spared when it comes to the collateral, which is just ignoring women's pain.

3:39So here is where we're going in today's video. I'm going to give you some tips to help you manage your endometriosis, things you can do at home starting today, guide you on the exact steps to help you get a diagnosis, help you navigate conversations with doctors who would rather gaslight you than believe you and give you the care you deserve, and we're going to go through imaging. If you know someone who could benefit from this, please, please share it because the only way we're going to ever change care for women for the better is if we're working together and we're sharing information. Now, before I talk about how we get diagnosed, we need to clear up one of the most confusing and frankly harmful things women are told about endometriosis.

4:19And listen, if you suspect endometriosis, this next three minutes could save you from years of struggling. So listening. I was under the impression that the only way to diagnose endometriosis is through surgery, exploratory surgery. I've been told that by physicians themselves. And so you debunked that. Any doctor who's telling you, I cannot diagnose you with endometriosis unless I do surgery, is a doctor that doesn't have enough experience. This clip is from the Lana B. Nassar Vision, and I agree with this doctor 100%. Let's talk about imaging. So firstly, here is the reality. The definitive diagnosis has traditionally meant visualization and or biopsy via laparoscopy.

5:06Laparoscopy is a minimally invasive surgery where they make several incisions, they have a camera, and they're operating without opening up your entire abdomen. But these days, clinical diagnosis is valid and we have imaging options. And this is what I think is important for you to understand. Treatment should not be held hostage until surgery, especially when symptoms and imaging strongly suggest endometriosis or related conditions like adenomyosis, which is something that Lilia Reinhart mentioned. She got diagnosed via MRI. I'm going to talk more about that. So when you meet with a skilled clinician, they can build a high confidence working diagnosis using your symptom pattern.

5:55We're going to talk about what you need to track today, your response to different treatments, exam findings, and if they're skilled, they can do imaging. They can do a transvaginal ultrasound. A wand is inserted into the vagina and visualize your lesions there. If you have stage three or stage four endo, you should be able to see this on an ultrasound if you are skilled enough, if you have the skills to actually observe endo. And if you don't, this is probably not someone you want operating on you. I would say if somebody isn't skilled enough to do the ultrasound on me and to visualize endo and see where it all is, and they're also not willing to do imaging before surgery, that is not someone I would choose for surgery.

6:35But as a patient, you deserve relief and a plan before a scalpel ever enters the chat. So I want to talk specifically about imaging, what you need to know. But first, I think it's really important that you understand that the symptoms you present with can change how long it takes for you to get diagnosed. And this is absolutely wild, infuriating, just maddening. So there was a recent 2025 study and what they found is if a patient presents with infertility, the median delay to diagnosis is about three years. But wait for this. If the patient presents with dysmenorrhea, that is pain with your periods, the median delay is about 12 years.

7:26So on average, we are seeing women can go 10 years before they get the diagnosis. And if it's period pain, it may be longer. But if it's infertility is your symptom, you may get diagnosed sooner. And I'm not telling you to tell your doctor, you're struggling to get pregnant just to get a diagnosis sooner. But what I am saying is those patients do tend to get diagnosed faster. But listen, your pain is enough. Your symptoms are enough. You deserve to be believed with the symptoms you have. So in Lily's story, she talked about pushing for an MRI and that MRI showed adenomyosis, also sometimes called adenomyosis.

8:05Now, that is when there is uterine lining infiltrating the muscles of the uterus. Your uterus is a big muscle. You've got that uterine lining in there. Now, you've got painful periods, inability to contract efficiently. So, the periods, they can sometimes be long. You can have a lot of clotting. There can be really heavy periods as well. Now, when it comes to imaging, this is where a lot of people get misled or discouraged. And you may have been told your ultrasound is normal, so you don't have endometriosis. And that's absolutely not how this disease works. So I want you to understand that imaging can rule in endometriosis, but the lack of endometriosis on imaging doesn't mean you can rule it out.

8:48Stage one and stage two endometriosis that is superficial, that is on the peritoneal lining of the abdominal cavity, may not show up in imaging. And a standard pelvic ultrasound not done by an expert may miss the majority of endometriosis. And this is just really important to understand because imaging can identify deep infiltrating disease if the right person is looking for it. And if you've got stage three, stage four, you've got a lot of scarring going on. You are going to see things like your bowels being adhered to your uterus. Hi, that was me. Your ovaries may be stuck. Things are not looking normal and the normal anatomy is not there.

9:32Now, we're going to talk more about symptoms you should be looking for. However, I want you to understand that if somebody is having pain with urination, pain with bowel movements, obstructed bowel movements, so it doesn't feel like you completely evacuate your bowels, if you're having changes in urination, these kinds of things, that's usually a sign of deep infiltrating endometriosis. And that's usually something that can be caught when you have imaging. But I will say, and if you've seen my personal story, that your ultrasound and MRI are only as good as the clinician and radiologist who is interpreting them.

10:11Endometriosis imaging is a skill set. It's not, you know, it's not just by default. You'll see it on a scan. And if your clinician doesn't have the expertise, they may miss it. That happened with my MRI. I sent it to someone different. They saw everything. everything. And what was wild about that is that I don't read images for a living and yet I could see my adenomyosis and the radiologist told me that like I was just basically a dramatic patient who was like seeking attention. And I was like, no, but like, bro, if I can see it, like something's wrong with you. Like get a new career. Now there is something specific in the world of endometriosis called endomapping.

10:49And this is where they actually map the disease. They don't just tell you about like, oh yeah, I suspect this will look like stage three or stage four, which is what you get after you have surgery done. What they'll actually look at is they'll map the disease and tell you what organs are involved. And they will tell you about the deep infiltrating lesions, specific locations they're in, endometriomas, what you need to know about that. And that is done using a gel MRI. So gel is inserted into the vagina, into the rectum. Thus expand the tissue so that you can visualize it better. The MRI is done.

11:29It's sent to a specialized radiologist. They give you an Enzian score. The Enzian score tells you a lot more about the disease than the stage does. The reality is, is that a lot of us have staging that doesn't match the symptom presentation. You might have stage one and you have the worst pain in the world. Someone may have stage four and they have like no pain and it makes no sense because as Dr. Melissa McHale said on the podcast, like literally endometriosis has no rules and that's lame because it'd be really nice if it followed some rules for our sake. So can you diagnose endometriosis via clinical symptoms?

12:05Yes. Can you start treatment based on clinical symptoms? Yes. Can you diagnose endometriosis using imaging? Yes, and imaging should be the first line. So, ultrasound imaging or doing MRI, doing the endo mapping that I talked about, that should be first line before surgery comes into the equation because this helps them prep for surgery. Make sure the right people are in the room. Make sure that you know what to expect. If you need bowel resection, that's not being down for a day or two, that's being down for like months in some instances, right? And so as someone who's been through excision surgery, it is a good two to three weeks of recovery, but you only feel like majorly down for the count in the less severe cases for like a couple of days.

12:58Whereas if they're really extensive cases where organs are having, you know, tissues removed, bowel resections are being done, that's going to be a much longer period of time. You need to prep for that, okay? You have a life to live. Now, my caution to you, MRI comes back saying normal, ultrasound comes back saying normal, CT comes back saying normal, no evidence of endometriosis. That doesn't necessarily mean you do not have it. It might mean the imaging wasn't done right, the imaging machine wasn't, you know, quality enough that there wasn't a specialized protocol, There wasn't a radiologist who actually knew what they were doing, knew how to identify the disease.

13:37So let's talk about how to ask for the right imaging, especially because doctors love to deny us our labs, don't they? Labs and imaging all the time. So when you're advocating for yourself, here's the language I want you to use. Firstly, I am requesting imaging for endometriosis. like an ultrasound, an MRI, is it possible to have endomapping? Ask, does this radiology center have a specialist in endometriosis imaging? Is the person who's reading my report specialized enough? They might tell you they are. The guy who read mine and got it all wrong was like, of course I'm an expert in this. And I was like, man, little humility would go a long way, buddy.

14:19Ask, will the radiologist evaluating my scan be looking specifically for deep infiltrating endometriosis. You want to make sure they're looking for that, that they're going to be taking into account organ involvement. If there's like, no, we don't got a guy for you, we don't got a gal for you, can you send this to a radiologist who regularly interprets endometriosis scans? So asking them if they tell you no, like, you know, or this person's pretty good, be like, is it possible to like get someone who's doing this all day, every day to read my scan. And going back to Lily's story, she saw multiple specialists.

14:59She had multiple tests. She was diagnosed with interstitial cystitis, very common misdiagnosis for endometriosis, and still no one connected the dots. And she wasn't sent to actually get imaging until she advocated for herself. This is not a patient failure. This is a system failure of not listening to women. And I just always think about this. When every woman with endometriosis is telling the same story, that's a clear indication that something is wrong with the medical system, not with the women who have endometriosis. And why do we all have the same stories? And yet nothing has changed for decades.

15:40So what do we do if a doctor is dismissing us? I want to talk about this because I think it's really important to have language because you may not even get to the place where you can ask about imaging because they're already dismissing you and telling you things like periodist pain is normal. Lily, like a lot of people, got told just to take the pill. I'm so sick of that. I wrote a whole book about that. Like, this is lame. Stop telling women just take the pill and actually do your freaking job and work them up. 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.

16:19That'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.

17:05That's d-r-b-r-i-g-h-t-e-n.com slash e-n-d-o-g-l-o-b-a-l. So you need to tell a doctor very specifically that your symptoms are impairing your quality of life and then ask what are the next steps in a structured evaluation? What are you going to do to rule this in, rule this out? If they are just like still kind of brushing you off, ask them, Can you document in my chart that I requested an endometriosis evaluation and that you declined it? And you can say, can you please put your reasoning for declining it? And if that's not prompting them, I would ask them, what is your differential diagnosis for these symptoms?

17:48And how are we ruling these in and ruling them out? Because sometimes you have to use doctor language to prompt their brain to go a little deeper with you. And that's lame when you're tired and you're in pain and you don't feel good. And I apologize that that's the way the system is, but I hope this language will help empower you. And if you still feel like you're not getting anywhere, straight up, if you're not comfortable evaluating suspected endometriosis, please refer me to someone who specializes in pelvic pain, endometriosis. Ask for a referral to someone else. So we're going to ask them to please work us up.

18:23We're going to ask them to document it if they don't, and then we're going to ask for a referral. Now, I talked about tracking symptoms. We're going to talk a little bit more about symptoms coming up, but I want you, just before we get into the symptom part, to think about tracking a symptom map over your entire cycle. So if that's like, you know, 27, 30 days, track your symptoms daily. Where's your pain? Where's the pain located? Like is it in the bowel? Are you having bladder symptoms? Scale 1 to 10, 10 being the worst pain, where are you at? Fatigue, bleeding pattern, are you in pain with sex, ovulation pain, hip back, nausea, migraines, like any symptoms that are coming up, and then anything that makes it better or worse.

19:09And a good doctor will recognize that endometriosis pain isn't always just severe cramps. Endometriosis symptoms aren't always pain. For many, there's a patterns, cyclical flares, bowel and bladder triggers that come up around your period, deep pelvic aching, pain that's radiating. So the pattern matters greatly. It's not just about, is your pain super bad or not? And then bring receipts to your visit, a one-page summary, just bullet points, not a novel, but like a one-page summary timeline so that you can convey your information as concise as possible and get the help that you need. And then always asking for more targeted evaluation.

19:55So having imaging, we already talked about it, labs to rule out other causes, meeting with other specialists. So if they're like, oh, I think you have gastrointestinal symptoms, like this is IBS, can I meet with a gastroenterologist? You may have to go through multiple specialists and you, this is what's lame about women's medicine. We know that gynecologists will fail us just as much as our PCP will fail us, just as much as the gastroenterologist fails us, but like, you don't know. I swear, like I was just in Vegas for a conference and I feel like it's just like, I'm just gambling though. And you got to gamble on which specialist is going to actually understand endometriosis and like, it's going to, it's going to click for them and they're going to help you.

20:36Now, one completely just MVP of the endometriosis world is the pelvic floor physical therapist. So, Lily mentioned this incredibly important and often overlooked aspect of endometriosis. And she said pelvic floor therapists were the first ones to suggest endometriosis. So let's talk about why that happens, what that means, and why insurance carriers, if you're listening to me, every woman with endometriosis, it doesn't matter the stage, doesn't matter if she's had surgery, she needs a pelvic floor physical therapist on her team. So sometimes our symptoms of endometriosis are actually rooted in pelvic floor dysfunction.

21:20That is very common because it's a response to chronic pain. And it doesn't always mean that it's the root cause, right? There's still endometriosis. We have to be looking at all of those. So I want you to understand this. You can treat the pelvic floor and still need to have excision surgery, still need to work on your diet, still need to address endometriosis as a whole, systemically as a whole, because that's driving the pain loop. And even after excision surgery, pain can persist due to pelvic floor dysfunction and trigger points. Whenever a woman says to me, oh, I stopped using tampons and my period pain ease.

21:58So tampons are toxic. I'm like, hold up. Actually, tampons are usually bearing down on a trigger point in there somewhere. And so that's a good sign I need to send you to pelvic PT. And this leads perfectly into like the next misconception I want to talk about with endometriosis because not everyone with endometriosis has the classic pelvic pain symptoms. So let's talk about symptoms people don't associate with endometriosis and let's start with fatigue. Part of endometriosis is that it can feel like a direct attack on your womanhood. I was very fatigued and was fainting backstage in my concerts and I was bleeding and I was pissed off with the whole world.

22:42I was like, why is this happening to me? What do I do to deserve this? In that process of having everyone pick me apart and feeling so insecure and feeling like less of a woman because I couldn't be intimate with my boyfriend because I couldn't go out when my friends wanted me to because I was dealing with digestion problems and bleeding problems and fainting and all the other amazing things that come along with having endo. Raise your hand if you've ever had to cancel plans because of your endometriosis. this. It's me. Hi. I'm definitely one of those people and I'm sure you are too. And it's not just pain.

23:20As Halsey was saying in that clip, she had fatigue. She also felt like less of a woman because she couldn't be intimate with her partner. She was having dyspareunia, pain with sex, and she was also having digestive issues. So this matters because fatigue and all these other symptoms are super common and they're super disruptive of our lives. So let's go through a list of things you should be aware of that are signs of endometriosis. And if you've got them, your doctor should know about them. That clip of Halsey came from EndoFound. I appreciate them sharing that. So if you have cyclical or unexplained fatigue, fatigue that's getting worse around ovulation around your period, that could be a sign of endo.

24:05I had no idea how tired I was until two weeks post excision surgery. And suddenly I had so much energy and I was like, I thought it was fine. I was not in fact fine. Bowel symptoms. So constipation, diarrhea, pain with bowel movements, gas, bloating, endo belly where we look like four months pregnant, sometimes six, it can be that bad. Getting diagnosed with IBS when you actually have endometriosis is very common. So bladder symptoms, urgency, frequency, burning. It feels like you have a urinary tract infection. A lot of women get diagnosed with chronic UTIs or like Lily Reinhart, they get diagnosed with interstitial cystitis and they get told, sorry, nothing you could do about it.

24:49Now, Halsey, just like bless her for sharing, she had pain with sex, especially deep penetrative sex where you're hitting trigger points or maybe there's adhesions not allowing your organs to move appropriately in that situation, that can cause tremendous pain. We can also see ovulation pain, back and hip pain, sciatic pain, pain rating down the thighs, the legs, into the stomach, making you nauseous, making you want to throw up. Heavy bleeding, spotting, clotting, these can be endometriosis on their own or it's cousin Ryan's shotgun, adenomyosis. As I mentioned before, those who are experiencing infertility or recurrent pregnancy loss, they tend to get diagnosed sooner with endometriosis.

25:39It's not true for everyone. If you feel inflammation flares that are like systemic, so you are having brain fog, headaches, nausea, you feel like you have the flu cyclically, so what gets called the period or menstrual flu symptoms. I did a whole episode talking about that and the histamine component, remember, well, maybe you don't remember, I will remind you or I'll teach you the first time. Endometriosis can interact with our mast cells. They can cause more histamine in the body. So we're cranky, we're irritable, we feel sick. It's a horrible feeling. So the big takeaway for you is that, and any doctor listening, endometriosis is a whole body inflammatory disease.

26:21It's not just a bad period. It's not something that like we only feel bad three to five days out of the month. We usually feel bad every single day of the month, and maybe we get three to five days of feeling good out of the month. So if your primary symptom is fatigue, track it. Track when it spikes. What is it paired with? Are you having other symptoms like in your pelvis, bowels, bladder? Does it cluster around ovulation, or is it just when you're bleeding? Knowing the patterns is really important because, again, your pain may not be so severe that it makes your doctor pause, but the pattern, the pattern definitely should.

26:56You know, before we go any further, if you're in pain right now, I definitely want to help you. And I said at the top of this, I was going to help you. So I have a free endometriosis flare toolkit with the same strategies I share with my patients to help calm inflammation, reduce pain. You can find it at drbrighton.com slash endoflare. So that's d-r-b-r-i-g-h-t-e-n dot com slash endoflare, e-n-d-o-f-l-a-r-e. And these are things that I use that have helped me immensely as well with my endometriosis. Now you can go grab that guide right now, but I'm going to give you some tips in just a second to help you get out of the pain in this video.

27:40So you walk away with something really tangible, but first I want to give you four clues you are with the right doctor in this whole conversation of endometriosis. So, you know, we often talk about red flags. I want to talk about some green flags. So, here are four green flags you got the right doctor. So, you're in the right room if they're talking about differentials, not being like, it's anxiety. You're just stressed. Oh, period pain? That's normal. No, they're talking about like, okay, let's rule out fibroids. Let's see if there's anomyosis going on. Like they're asking you about your family history and trying to get that differential.