Endo Battery

Endo Battery Fast Charged: EP 15

• Alanna • Episode 127

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In this episode of Endo Battery Fast Charged, we dive into the ongoing delays in endometriosis diagnosis, emerging imaging tools like transvaginal ultrasound for superficial endometriosis, and how advocacy is shifting the standard of care.

Learn why most patients see up to 7 doctors and face years of dismissal before a diagnosis—and how that delay worsens pain and outcomes. We explore the latest research on imaging, the importance of recognizing all types of endometriosis, and why collaborative, patient-centered care is essential.

Featuring expert insights and patient advocates like Heather Guidone and Jenneh Rishe, this episode is a must-listen for anyone navigating endo or supporting someone who is.

Links to articles:

Collaboration is key in managing endometriosis

Understanding diagnostic delay for endometriosis: A scoping review using the social-ecological framework. Health Care for Women International, 46(3), 335–351(2024).

Diagnosis of superficial endometriosis on transvaginal ultrasound by visualization of peritoneum of pouch of Douglas. Ultrasound Obstet Gynecol. 2024;63(1):105-112.

“Road to Diagnosis: Stomach Pain and Other Symptoms My Endometriosis Was Causing”


Website endobattery.com

Alanna:

Welcome to Endo Battery 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 Endo Battery Fast Charged charging and empowering your life with knowledge. Welcome to Endo Battery Fast Charged, the segment where we power through the latest research and stories that actually matter when you're living with endo or chronic illness, and we do it without the jargon overload or the eye-glaze-inducing data dumps. Today we're diving into some big ones why diagnosis still takes forever, how imaging is evolving and the not-so-fun trifecta of superficial, cystic and deep endotypes, plus a moving piece from an advocate that will hit you right in the pelvic floor. And don't worry, we know correlation does not equal causation. If it did, eating chocolate would cure endo and we'd all be pain-free and very, very happy. Let's plug in. You know we've reached a certain level of chronic illness. Enlightenment when a medical journal article starts to feel like a diary. In Heather Guidone's piece, Collaboration is Key to Managing Endometriosis. She doesn't just speak truth, she practically shouts it in a gentle, compassionate tone that every endo patient wishes their doctor had. It's part personal story, part rallying cry and 100% confirmation that no, you're not just unlucky or overly sensitive. You're managing a complex condition that needs more than a heating pad and vague encouragement. Heather drops what might be the most refreshing minder in modern gynecology you don't treat endo in a vacuum. It's not a one doctor and done kind of vibe. No, this thing requires a full on team, preferably one that actually knows what endometriosis is. Shocking. I know. We're talking gynecologists, pain specialists, therapists, nutritionists and, most importantly, you yes, you, the person who's been explaining their symptoms like it's a TED talk nobody asked for at every appointment for the last 10 years. And here's where it gets both touching and kind of hilarious in a laugh, so you don't cry. Kind of way you become the case manager of your own body. You're chasing down referrals, coordinating providers like you're directing a Broadway production and trying not to lose your mind when someone asks you if you've tried hot yoga. The truth is, healing takes a village, but too many of us have had to build that village from scratch, using nothing but determination, google and a decent support group. But the core of what Heather's saying isn't just about logistics, it's about dignity. When the collaboration happens and the right providers work with you instead of talking at you, something amazing occurs. You get to reclaim parts of your life that Endo tried to steal. That's not just medicine, that's empowerment. So if anyone's told you lately you're doing an incredible job navigating something that should be a group effort but too often feels like a solo mission, let this be your reminder to advocate for collaboration, not because you're difficult, but because you deserve care that sees you as a whole person, not just a pelvis or a uterus with an attitude.

Alanna:

Let's talk about the most frustrating aspect of endometriosis care the never-ending journey to diagnosis. According to a 2024 scoping review titled Understanding Diagnostic Delay for Endometriosis, a Scoping Review Using the Social Ecological Frame framework, healthcare for Women International has a very polite but firm call out by covering the fact that the average time it takes to get diagnosed with endometriosis is, as many of us know, 10 years. Yes, that's a full decade of pain, confusion and likely a Google search history that screams why does my pelvis hate me? Patients see on average seven different providers and in some cases, symptoms are discussed over 20 times before anyone says the E-word. If this were a dating app, we'd be swiping left on the entire medical system. The review took a deep dive into diagnostic delays through a social, ecological lens, which basically means looked at this mess from every angle personal, social, systemic and what they found is what most people with endo have been yelling into the void for years. Doctors often dismiss symptoms as normal. The word dismissive came up more than once and some providers even thought patients were making it up and here's a spoiler alert they weren't.

Alanna:

It's not a bad period problem A full body experience of chronic inflammation, fatigue and feeling gaslit by healthcare. Not shockingly, the wait times for care were even longer depending on your access route. Public healthcare longer waits, often due to physical access barriers like limited specialists or rural locations. Private care speedier, but with hefty financial barriers. It's a bit like choosing whether you'd rather walk barefoot through a field of Legos or fork over your savings for answers. You're in pain either way.

Alanna:

The kicker is all this delay makes things worse, literally. The study found that the longer the wait for diagnosis, the worse the pain, the more the disease spreads and the higher cost, not just for the person suffering but for the entire healthcare system. Basically, ignoring endometriosis is bad math and worse medicine. Early diagnosis equals less pain, fewer comorbidities and a fighting chance at reclaiming your life. In the end, this article laid out a strong framework to start changing this, pointing equals less pain, fewer comorbidities and a fighting chance at reclaiming your life. In the end, this article laid out a strong framework to start changing this, pointing to system-wide changes, better provider education and the radical idea that maybe, just maybe, we should believe the people when they say they're in pain. Imagine that. Well, the review isn't perfect. No research ever is. It's a solid, evidence-based mic drop demanding that we stop normalizing suffering and start taking endometriosis seriously, because 10 years is about 10 years too long, and getting this diagnosis can be even more challenging. That's why, when looking at this next article titled Diagnosis of Superficial Endometriosis on Transvaginal Ultrasound by Visualization of Peritoneum of Pouch of Douglas came in with a bit more information and maybe some promising insight.

Alanna:

When it comes to endometriosis, not all lesions are created equal, which would be fine, except for that, none of them come with a user manual and most like to hide. The three main types superficial peritoneal endometriosis, or SPE, ovarian endometriomas, or OMA, and deep infiltrating endometriosis, or DIE each have their own personality, if you will. Spe is the most common form, affecting up to 80% of people with endo. These lesions live on the surface of the peritoneum, which sounds simple enough, until you realize they're sneakier than a cat in a cardboard box. Standard imaging often misses them and historically you need a laparoscopy to catch them in the act. But hold up.

Alanna:

2024 brought us some exciting news with this article. It showed that with skilled technique and a little patience, transvaginal ultrasound might actually spot SPE, which again is the superficial peritoneal endometriosis, especially in the pouch of Douglas. Yes, that's a real place in your pelvis, not just a Scottish pub. The researchers focused on identifying subtle signs of peritoneal change in real time, which could be a huge step forward for earlier, less invasive diagnosis. Translation no more, let's just wait and see. Will symptoms rage on unchecked? Then there's the OMA and if you remember, that's the ovarian endometriomas, aka the chocolate cyst, not the fun kind, these are filled with old blood, not ganache. These cysts usually show up on ovaries and often play tag team with deep endometriosis, making them a bit of a diagnostic clue with deep endometriosis making them a bit of a diagnostic clue. The good news they're more likely to show up clearly on ultrasound. The bad news. They often mean disease is more advanced and can be linked to fertility issues and painful periods that feel like a demolition derby on your pelvis.

Alanna:

Now DIE, or deep infiltrating endometriosis or DFE, depending on your acronym preference is the heavyweight bunch. This type burrows deeper than five millimeters into the tissue and has no problem invading structures like the bladder or the bowel. It can actually alter anatomy. Yep, it's that serious and usually needs an MRI to get the full picture. Think of it as the endo equivalent of a plot twist in a medical drama Hard to spot, easy to underestimate and very impactful. And because endo likes to keep things Interesting, these types can overlap like a Venn diagram from the heated place down under and I don't mean Australia you can have SPE, oma or die all at once. Fun right Plus extra pelvic endo that decides to pop up in places like your diaphragm, lungs or, honestly, wherever it feels like it's a whole body disease that refuses to be boxed in, which is exactly why proper imaging, skilled interpretation and actually listening to patients is so vital. Because, when it comes to endo, seeing literally and figuratively is believing.

Alanna:

Sometimes stories can be more powerful than even research, because it's the lived experience, it's the stories that are told from people who have gone through what many of us have gone through. And, you know, sometimes I come across a piece that just stops me, one that puts into words what so many of us have felt but rarely see captured in such an honest, human way. Jenneh Rishe's story, featured in health. com, is exactly that. She takes us through the gut-wrenching reality of living with a disease that so often feels invisible. Endometriosis didn't just disrupt her life, it hijacked it. From being a nurse juggling 12-hour shifts while silently battling unrelenting pain, to undergoing nine surgeries before finally being heard. Her story is a striking reminder of just how loud we have to scream before a medical system listens. But what makes this piece so powerful isn't just the pain, it's the purpose Jenneh found through it. She didn't just survive the gaslighting, the delays and the trauma. She turned it into action. She founded the Endometriosis Coalition, using her voice to fight for others who are still searching for answers in a system that too often tells them it's just a bad period.

Alanna:

If you've ever doubted your pain, if you've ever walked out of a doctor's office feeling dismissed, or if you're just trying to understand what someone you love is going through, please read this. Jenneh's words are a masterclass in advocacy, strength and the brutal beauty of refusing to be silenced. Head over to health. com and look up her piece titled Road to Diagnosis Stomach Pain and Other Symptoms my Endometriosis Was Causing. It's more than a story, it's a call to action. And that's a wrap for the fast charge.

Alanna:

Today, if your brain feels a little more powered up, great. If it feels slightly fried, same honestly, because navigating the science, the stats and the lived experience of endo isn't exactly light reading. But knowledge is power and in our case it's also pain relief, validation and maybe one less wild goose chase around the medical system. Remember, just because your symptoms are common doesn't mean they're normal, and just because something shows up on a skin or doesn't doesn't mean your experience is any less real. We'll keep breaking down the research, calling out the delays and celebrating the people, pushing the conversation forward. Until then, hydrate, rest when you can and maybe eat that chocolate, not because it's a cure, but because you freaking deserve it. Until next time, continue advocating for you and for others.