Endo Battery

Endo Battery Fast Charged: EP 10

September 04, 2024 • Alanna • Season 2 • Episode 10

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-  Could endometriosis be the hidden cause of your unexplained pain? 
- We dive deep into the misunderstood conditions linked to endo, including my personal struggle with anterior cutaneous nerve entrapment syndrome (ACNES).  
- Discover the intriguing connection between endometriosis and rheumatoid arthritis (RA) and what recent research reveals about their relationship.  
-  Highlighting the unique medical challenges transgender and non-binary individuals face with endometriosis—empathy and inclusivity are vital!  
-  Learn about the complexities ovarian endometriomas add to endometriosis staging and the tough surgical choices they bring.  
-  Hear about Allison Bentempo’s research on symptom invalidation and the crucial disconnect between patients and clinicians.  
- An Australian study uncovers how adenomyosis, bowel endometriosis, and adhesions contribute to endo recurrence.  
-  Empower yourself with knowledge and join the conversation that could change your endometriosis journey 
Anterior Cutaneous Nerve Entrapment Syndrome: An Underestimated Diagnosis

Association between endometriosis and arthritis: results from NHANES 1999-2006, genetic correlation analysis, and Mendelian randomization study.


Transgender and non-binary people's experience of endometriosis. J Health Psychol. 2024 Aug 10:13591053241266249.


Association between Ovarian Endometriomas and Stage of Endometriosis. J Clin Med. 2024 Aug 2;13(15):4530.


 Conceptualizing Symptom Invalidation as Experienced by Patients With Endometriosis. Qual Health Res. 2024 Aug 8:10497323241253418.
@allysonbontempophd on IG


Predicting disease recurrence in patients with endometriosis: an observational study. BMC Med. 2024 Aug 7;22(1):320.

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 this is Endobattery Fast Charged charging and empowering your life with knowledge. Welcome back to Endobattery Fast Charged, ready to supercharge your understanding of endometriosis. We've got the latest research hot off the press. But remember, just because two things are linked doesn't mean they're BFFs. Correlation doesn't equal causation. So grab your mental jumper cables and let's dive into the data. This first article comes to you because it took a little bit of a personal turn and research for me to be able to find something that correlated with the pain that I was experiencing. So, without further ado, this next article sent to me, titled Interior Cutaneous Nerve Entrapment Syndrome an Underestimated Diagnosis. Picture this you've got this nagging. What in the world is going on? Much like I did, kind of pain in your abdomen and everyone keeps shrugging and saying maybe it's just stress, or maybe you know it's in sort of random explanation. But little did they know that you might be dealing with anterior cutaneous nerve entrapment syndrome, or we're going to call it ACNES, an underestimated condition that loves to fly under the radar like a stealthy ninja? Now, what is anterior cutaneous nerve entrapment syndrome, or ACNES, you ask? Simply put, it's when one of the nerves in the front of your abdomen gets squished, causing a sharp burning pain. Doctors often overlook it because, well, it doesn't show up on regular tests. Think of it like that one friend who's really good at hiding during a game of hide and seek you know they're there, but finding them? That's the real challenge. Here's where it gets interesting for endo warriors. You're already well-versed in mysterious pains and feeling like a medical anomaly.

Speaker 1:

Endometriosis can act as a sidekick to acnes. The constant inflammation from endo can cause nerve irritation and before you know it, you've got pain in places you didn't even know you could hurt. It's like your body decided to host a surprise party and pain was invited. For people with endometriosis, especially acnes can add to the confusion. You're used to attributing abdominal pain to endo because, let's be real, it's usually the suspect. But what if this new discomfort is actually coming from an angry nerve that's tangled up? It's like playing a detective with your body in this crime scene and everything is a suspect. Spoiler alert Agnes is the one guilty of throwing you into a loop of pain you didn't sign up for. So what can you do? Well, the diagnosis usually comes after your dog presses on a specific spot in your abdomen and you jump like it's been hit with a laser. Not a fun test, but hey, it works. And the treatment? A mix of nerve blocks, physical therapy and sometimes surgery. Think of it as telling that nerve enough is enough. And if you've got endo, make sure your medical team keeps an eye on the whole picture, because when endo and acnes gang up, you've got to be ready to show them who's boss. In conclusion for this article, while acnes might be sneaky, it's no match for the knowledge you've got about your body. Just remember whether it's endometriosis, nerve entrapment or both, you're the expert in your pain, so keep pushing for answers. Let's continue to look at other co-challenges that kind of like to pair up with endometriosis In this next article titled Association Between Endometriosis and Arthritis Results from NHANES 1999-2006 Genetic Correlation Analysis a Mandelian Randomization Study.

Speaker 1:

So imagine your body is at a party that no one really wanted to throw. But here we are. Endometriosis and arthritis are those guests who show up uninvited and just won't leave. Previously, researchers noticed that these two party crashers seem to have a thing for each other, especially when it comes to rheumatoid arthritis or RA. But here's the kicker they couldn't figure out if they were related by blood or genetics, or just two random strangers who happened to meet at the same dull party. Researchers decided to play matchmaker, or maybe matchbreaker. In trying to figure out if these two correlations were actually linked through genetics, they whipped out some fancy science tools, including a Mendelian randomization. Genetic correlation analysis Sounds impressive. Right After number crunching and head scratching, the scientists discovered that genetics wasn't to blame for these two troublemakers teaming up.

Speaker 1:

So if you were hoping to blame your genetics for this one, no luck. But don't start celebrating just yet. While genetics didn't get the blame, the researchers did confirm that there's a pretty strong link between endometriosis and rheumatoid arthritis. It's like that moment when you find out two of your friends who are unlikely to get along started hanging out without you. They've clearly connected, but nobody's really sure why. Doctors are now being told to keep an eye out for patients with endometriosis, as they might also be at risk for RA. It's like that classic warning if you see one, the other might not be far behind. But the real twist the researchers are saying, hey, let's not focus on genetics, there might be other things at play here. So the mystery of why these two conditions love each other so much continues, and further investigation is definitely in order.

Speaker 1:

In this next recent study that was published, titled Transgender and Non-Binary People's Experience of Endometriosis, researchers took a deep dive into the world of transgender and non-binary folks living with endometriosis and surprise, surprise, they found that navigating this already challenging condition comes with even more twists and turns when gender identity is thrown into the mix. It's like trying to assemble a piece of IKEA furniture with half the instructions missing or half the sick man's arms and legs missing, except the stakes are much higher and there's no Allen wrench to be found. The researchers highlighted the additional layers of diagnostic delays, because why get diagnosed late when you can get diagnosed later? But beyond the logistical frustrations, there's an emotional roller coaster that often accompanies the journey. Imagine symptoms that not only cause physical pain but also trigger gender dysphoria. That's like trying to outrun a bear while simultaneously swatting away a swarm of bees. You're dealing with two battles at once, and neither one is particularly fun. Then there's this concept of on-home likeness, which sounds like it could be a trendy new design aesthetic, but it's actually about feeling disconnected from your body and the world around you. Picture living in a house where the furniture rearranges itself every night while you're sleeping. The disorientation, helplessness and despair yeah, that's what gender diverse people with endometriosis are up against as they try to find their footing in a world where the healthcare system often doesn't even have a map. The authors of the study didn't just stop at pointing out the problems. They wave the advocacy flag high, calling for more support and awareness. Because, let's face it, when you're dealing with endometriosis and navigating gender identity, the last thing you need is a healthcare system that's still using a rotary phone. It's 2024. It's about time we ensure that everyone gets the inclusive, timely care they deserve. After all, the only delay anyone should ever experience is when their streaming service buffers at the worst possible moment, not when they're seeking life-changing medical care.

Speaker 1:

For this next study, I want you to imagine that now your ovaries are playing a tricky game of hide-and-seek, but with a twist Instead of just hiding, they've decided to make things more complicated by developing these little, or sometimes big cysts called endometriomas. And, of course, like any good game of hide-and-seek, the stakes get higher the longer you play. In a recent study titled Association Between Ovarian Endometriomas and Stage of Endometriosis, researchers decided to play detective but not the mysterious kind and figure out that when these endometriomas pop up on just one ovary, it's usually a sign that you're dealing with at least stage 3 endometriosis. That's like getting to the hard level of a video game Things are tricky, but you're still managing. But when the cysts decide to show up on both ovaries, you're in stage 4 territory, which is more like playing the game on extreme mode, where the enemies are tougher and the challenges keep piling up.

Speaker 1:

The thing is, these double-sided endometriomas don't just hang out alone. They bring their buddy deep, infiltrating endometriosis, and together they make surgery a bit like trying to untangle a really gnarly knot in your favorite necklace it takes longer, requires some serious skill and there's always a risk you might make things worse if you're not careful. So what's the moral of the story? If your ovaries are gearing up for a serious game, you want the best player on your side. Translation a high volume endometriosis specialist who knows their way around these tricky cases is essential because when it comes to endometriomas and endosurgery, it's not just about finding what's hidden. It's about planning the best strategy to deal with whatever shows up. You know what has shown up?

Speaker 1:

The latest study by endometriosis researcher and scientist Allison Bentempo, titled conceptualizing symptom invalidation as experienced by patients with endometriosis. She's been on a roll, and her newest research is all about putting a name to something many with endometriosis have unfortunately experienced symptom invalidation. In this study, bontempo delves into the frustrating world of what happens when doctors just don't seem to get it, whatever it may be for you on any given day. Using a mixed method approach, which sounds fancy but basically means she just looked at a whole bunch of data from different angles, montempo analyzed responses from over 1,038,000 patients Yep, that's a million plus voices saying hey, we're not being heard.

Speaker 1:

Her research highlights how differences in understanding between patients and clinicians create a chasm for invalidation. For example, when a patient says this pain is destroying my life, a clinician counters with it's just period pain. That's more than just a miscommunication. It's a gut punch to the patient's reality. But it doesn't stop there. The study also dug into how beliefs about what causes endometriosis, the timeline of illness and even the effectiveness of treatments can lead to patients feeling dismissed or doubted. Bontempo's findings show that invalidation often occurs when clinicians either question a patient's motives or don't fully investigate their symptoms. It's like adding insult to injury. Not only are you in pain, but now you're being treated like your pain doesn't matter. So Bontempo's work doesn't just confirm what patients have been saying for years. It gives it a name, a framework and the data to back it up.

Speaker 1:

In a world where patients often feel like they're shouting into the void, this research is a much needed megaphone. So here's the thing You're dealing with endometriosis and you've had the whole shebang surgery, treatments, the works, you think you're finally in the clear, only for those pesky symptoms to creep back up on you. Turns out this whole reoccurrence business is a bit of a wild card. An Australian research team decided to tackle this head on in a study titled predicting disease recurrence in Patients with Endometriosis an Observational Study and they did so with some pretty broad strokes. Now, when they're talking about reoccurrence, they're not just talking about new lesions popping up that a surgeon can confirm while they're poking around inside. No, they're also counting stuff that shows up on imaging scans, or even just symptoms that make you feel like you're stuck in a never-ending cycle of deja vu. With definitions this wide, it's no wonder they found reoccurrence rates all over the map.

Speaker 1:

But here's where it gets interesting or frustrating, depending on your perspective. The study found that a few key things could make you more likely to deal with this dreaded reoccurrence. Top of the list the triple threat of adenomyosis, bowel endometriosis and adhesions. It's like the universe decided to throw everything at you at once. However, there's a twist Adenomyosis likes to play a sneaky game of mimicking endometriosis symptoms so well that even the experts might be fooled. The researchers pointed out that some people who go back under the knife for what they think is reoccurring endometriosis might actually be dealing with adenomyosis instead. It's the ultimate bait and switch, and not the kind you'd want to sign up for.

Speaker 1:

So what's the takeaway? If you've got bowel lesions, adhesions or adenomyosis hanging out in your body, your odds of facing down endometriosis again after surgery might be higher. The researchers are basically saying, hey, keep an eye on these factors because they're troublemakers in the world of endometriosis. In other words, the road to recovery can be bumpy, but understanding the risks might help you navigate it a little more smoothly. Thank you for joining me on this episode of Endobattery Fast Charged. I hope you feel empowered by the information that you just now heard. If you want to research these articles more, remember all the links are in the description of this podcast. I hope you feel empowered to continue advocating for better change and care in the endometriosis community. Until next time, continue advocating for you and for those that you love.