Endo Battery

Fast Charge #17: Research Reality Check: When Scientists Study the Wrong Tissue for Endometriosis

• Alanna • Episode 153

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We dive into endometriosis research, breaking down recent studies to understand what they actually mean for patients and where science may be misleading us.

• Critical review reveals nearly half of endometriosis research isn't even studying the right tissue
• Bilateral oophorectomy before age 45 leads to significant quality of life challenges, with HRT providing insufficient relief
• Large study confirms endometriosis shares genetic links with multiple immune conditions
• Research on childhood adversity and endometriosis confuses correlation with causation
• Scientists need to study actual endometriosis lesions rather than using endometrium as a stand-in
• Understanding research limitations empowers patients to advocate for better care

Continue advocating for yourself and others, and keep pushing for more accurate research that will lead to better treatments and understanding of endometriosis.

Links

Endometriosis is not the endometrium: Reviewing the over-representation of eutopic endometrium in endometriosis research

Quality of life of patients with bilateral oophorectomy before the age of 45 for the treatment of endometriosis

The phenotypic and genetic association between endometriosis and immunological diseases

Adverse childhood experiences and the risk of endometriosis—a nationwide cohort study

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Website endobattery.com

Speaker 1:

Welcome to Endobattery Fast Charged, a series dedicated to keeping you informed and empowered in the realm of endometriosis. Teaming up with board-certified patient advocates, we bring you the latest articles, research and insights to equip you with accurate information and a deeper understanding. Whether you're expanding your knowledge, staying updated or seeking clarity, you're in the right place. I'm your host, alana, and is EndoBattery Fast Charged charging and empowering your life with knowledge. Welcome back to EndoBattery Fast Charged, where we take the overwhelming, often head-scratching world of chronic illness research and break it down into real, relatable conversations that don't require a PhD to follow, just a cup of tea, maybe a heating pad and an open mind. Today, we're doing one of my favorite things diving into research. Yep, we're pulling back the curtains on studies that have been floating around some wildly celebrated, others whispered about in the corners of the internet and figuring out what they actually mean and, more importantly, what they don't. Because, let's face it, sometimes a study says X is linked to Y and, before you know it, your aunt's on Facebook telling everyone that kale causes cavities. So here's your gentle, loving reminder Correlation does not equal causation. Just because two things show up in the same sentence doesn't mean one made the other happen. It's science, not a soap opera. So whether you're here because you love to nerd out with us or because someone once told you that chocolate fixes hormones, bless their hearts you're in the right place. Let's take a look at the data, keep our minds open and maybe, just maybe, maybe, challenge a few myths along the way, always with compassion, curiosity and a touch of humor. Let's plug in and power up. All right, folks, buckle up to your laparoscopy belts, because today we're diving into a research reality check titled Endometriosis is Not Endometrium Reviewing the Overrepresented Utopic Endometrium and Endometriosis is Not Endometrium Reviewing the Overrepresented Utopic Endometrium and Endometriosis Research. It's a mouthful, yes, but a vibe. Think. Science fair meets investigative journalism, with a side of you had one job.

Speaker 1:

So what did these researchers do? Did they cure endo? Not quite. Did they develop a new diagnostic? Also no, what they did do was look through 122 publicly available research data sets that were supposedly about endometriosis and found drum roll, nearly half of them weren't even studying endotissue. Shocker, I know, that's right.

Speaker 1:

Scientists out there are claiming to study endometriosis while using tissue from inside the uterus, the utopic endometrium, as a stand-in for rogue misbehaving lesions outside of it. That's like using a house cat to study tigers Technically related, but also very much nope. No, now, to their credit, this team wasn't just pointing fingers and yelling you did it wrong. They actually mapped out why this matters. Endolesions and utopic endometrium don't behave the same biologically, molecularly or immunologically. So using the wrong tissue means we're building our understanding of endometriosis on a foundation of mulch wet mulch with glitter on it. Here's the kicker. Many mislabeled samples weren't even intentional scams. It's just that the research world kind of collectively shrugged and said close enough, and then moved on to publish. Meanwhile patients are like cool, can I get relief now? The answer is maybe, but only if your lesions behave exactly like a healthy uterus lining so unlikely. So what do the researchers suggest? Study actual lesions. People Use better labels. Be specific, because the sooner we stop confusing endo with endo-ish, the sooner we get real answers and real solutions. It's not a cure, it's not a miracle Heck, it's not even a new drug, but it is a moment of scientific accountability. And if we're serious about helping people with endo, that's where we start with the right tissue. Endometriosis is not endometrium, and apparently that's news. While we're unpacking studies, let's unpack this one as well. This study highlights even more why it's important that we understand that endometriosis is not endometrium, because we're unpacking the study with a title that sounds like a polite warning label but actually hits like a plot twist Quality of life of patients with bilateral oophorectomies before the age of 45 for treatment of endometriosis.

Speaker 1:

In plain speak, what happens when you lose both ovaries before 45 in the name of treating endo, and whether your quality of life afterward throws a celebration or files a complaint? The researchers followed 52 women in France who had bilateral oophorectomies or surgical menopause full stop before they age 45. They were about 40 at the time of surgery and 43 when surveyed. The researchers used a tool called MenQOL, menopause Quality of Life Questionnaire, to ask how they were doing. Spoiler, they were surviving, but thriving not so much. The worst score sexual quality of life they averaged 4.77. And vasomotor symptoms Hello, hot flashes and night sweats at 4.01. Women who were smokers or had higher BMI fared much worse.

Speaker 1:

Strangely, hormone replacement therapy didn't seem to help much, which feels like someone unplugging the fan in a sauna and calling it fine. But here's the real kicker this wasn't a before or after study. It was a one-time snapshot. So we don't know how these women were doing before surgery and we definitely don't know how different types of HRT might have helped if better tracked. It's kind of like showing up to the third act of a movie and trying to guess what the heck happened in act one.

Speaker 1:

Also, no control group, no comparison to endo patients who didn't have their ovaries removed Just 52 women from two hospitals in Toulouse. So while it's a powerful signal flare, it's not a definitive map. And that missing info on HRT big yikes map and that missing info on HRT Big yikes. If you're going to evaluate hormone therapy, maybe tell us what, how much or for how long. Still, the study does something really important. It shines a spotlight on the fallout of surgical menopause in younger endopatients. It makes a case for pre-op counseling, lifestyle guidance and individualized post-op support. In short, if you're going to yank out the ovaries, we better show up afterwards with more than just a good luck.

Speaker 1:

And because we're on the pathway of understanding pros and cons of endometriosis and the studies that follow them, we're going to take a look at this next study titled the Phenotype and Genetic Association Between Endometriosis and Immunological Disease Try saying that fast, 20 times Translation. This study looked at how endometriosis might be linked, both in symptom and genetics, to a bunch of immune-related conditions and, spoiler, endo didn't come alone. It brought a whole crowd to the party. Using data from a massive group of people think 8,000 plus with endo and over 64,000 with immune conditions researchers found that people with endometriosis were way more likely to also have immune or inflammatory conditions like rheumatoid arthritis, multiple sclerosis, celiac disease, osteoarthritis and psoriasis. So if endo feels like more than just a period problem, that's because it is. They even looked at genes and found that endometriosis shares some of the same genetic patterns with these immune conditions. So it's not just coincidence, it's written in code. In fact, they saw signs that having endo might increase your chances of developing rheumatoid arthritis later on Not dramatically, but enough to raise an eyebrow.

Speaker 1:

Now here's the thing this isn't totally new news. Patients have been saying this for years. Smaller studies have said the same thing, but what this research does is add some serious backup. It's like finally getting the receipts for what the community has been telling the doctors forever. Endo is a full body condition, not just something that messes with your uterus. To be clear, having endo doesn't mean you're guaranteed to get these other illnesses. It just means your chances are higher. And even though they saw some genetic links, your lifestyle, environment and overall health still play a huge role in how things play out. The good news if we understand how endometriosis overlaps with other conditions, we might find better treatments, maybe even share meds or research between them. This study found a few specific genes that could be helpful starting points. That's promising for future care that looks at your whole self, not just one system at a time.

Speaker 1:

Endometriosis isn't just about pelvic pain or periods. It's a complex condition that's connected to your immune system and it deserves care that reflects that. This study gave us stronger proof of what many of us have known all along and that, my friends, is a step in the right direction. What's a step in the meh direction is this next study that we're going to take a look at, titled Adverse Childhood Experiences and the Risk of Endometriosis. A Nationwide Cohort Study Sounds intense, right and, honestly, it kind of is.

Speaker 1:

This research looked at over 1.3 million Swedish-born women over 27 years, which is pretty impressive, and the authors concluded that things like prenatal mental illness, substance use, being raised by a teen parent, exposure to violence, instability and poverty were all linked to higher risk of being diagnosed with endometriosis, and the more childhood adversity someone experienced, higher that risk seemed to be. It's giving trauma bingo, but make it gynecological. Let's start with the good stuff. This study had size on its side more than a million people. That's not just a sample. It's a small nation. It also reaffirmed what public health experts already know Adverse childhood experiences, aces can have long-term health impacts.

Speaker 1:

The data showed a dose-response curve, meaning the more adversity someone faced, the higher their chances of receiving an endo diagnosis. And hey, studying potential risk factors for endo always welcome. We want to understand the disease better. We just need to make sure we're asking the right questions. Here's where things get a little shaky. Correlation is not causation. Yes, people with more childhood adversity had higher rates of endometriosis diagnosis, but it doesn't mean trauma caused the disease. There's a huge difference between having more interactions with the healthcare system and being biologically more likely to develop endo. People with ACEs often interface more with medical and social services. That means more opportunities to get diagnosed, not necessarily more disease. The study lightly nods to this, but it doesn't explore how access provider bias or systemic inequalities might shape who gets recognized and treated.

Speaker 1:

Let's talk about the big issue how this study could be misinterpreted. Saying adversity increases risk of developing endometriosis makes it sound like trauma is the cause. That framing is dangerous. It reinforces the outdated, harmful idea that chronic pain is psychological or, worse, self-inflicted. We've been down that road before and it set endometriosis research back decades. And can we talk about what this study doesn't mention, like the cases of endometriosis found in cisgender men and fetal tissue? Those alone poke giant holes in the idea that childhood trauma causes endo.

Speaker 1:

Pain isn't always rooted in psychology and endo definitely isn't. The study also overlooks one key possibility Many people with trauma histories are more likely to be believed when they describe pain, or maybe they're seen by specialists more often, or maybe their records include more detailed notes because of social service involvement. These are diagnostic patterns, not biological risk factors. Without accounting for that, the whole risk of developing endo claims feels like a little shaky leap. And while the authors do admit ACEs might increase pain severity and likelihood of seeking care, they tuck that critical nuance way down in the fine print while the headline runs wild with trauma equals endo. To be clear, aces matter.

Speaker 1:

The long-term health effects of trauma deserves attention, but using them to explain a disease as complex and biologically driven as endometriosis is like trying to explain a hurricane by blaming the wind chimes. It's simplistic, misleading and distracts from a more urgent question, like why we still don't have widely available diagnostic tools, better treatments or sufficient funding. We need research that focuses on genetics, immune system dysfunction, environmental exposure, endocrine disruption, actual mechanisms and a healthcare system that recognizes systemic bias, not one that confuses pathology with personal history. Well, that's a wrap on today's deep dive. I hope this episode helped make all that research feel a little less intimidating and a lot more empowering, because understanding the data, really understanding it, puts the power back in your hands, whether it's recognizing what's solid science, what's still evolving and what just doesn't quite add up.

Speaker 1:

The more informed we are, the more equipped we are to advocate for ourselves, for others and for better care in the endometriosis space. So if you're walking away today with even one new insight and one moment of clarity, that's a win, and if it sparks a little fire in you to push for change or ask bigger questions in your own care, even better. Remember, you don't have to be a researcher to understand your body or demand better. You just have to stay curious, stay courageous and keep showing up, because change starts with awareness and awareness starts here. Until next time, continue advocating for you and for others. Bye.