Endo Battery

Endo Year Reflection: #14

• Alanna • Episode 103

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The episode reflects on critical insights shared with Dr. Cindy Mosbrucker in episodes 84 and 85 about endometriosis care, highlighting the need for specialized knowledge and patient advocacy. We gained a deeper understanding of pain management, the implications of treatment decisions, and the importance of personalized healthcare. 

• Dr. Mosbrucker’s journey and insights on endometriosis care 
• The gap in medical education regarding endometriosis
• Using a baseball analogy to explain surgical skills and expertise
• Understanding the different types of pain beyond endometriosis
• Addressing the implications of current standard care practices
• Discussing the consequences of ovary removal
• The necessity of personalized hormonal treatment 
• Dr. Mosbrucker's passion for patient care and advocacy 
• A call to action for awareness and support within the community

Website endobattery.com

Speaker 1:

Welcome to EndoBattery, where I share my journey with endometriosis and chronic illness, while learning and growing along the way. This podcast is not a substitute for medical advice, but a supportive space to provide community and valuable information so you never have to face this journey alone. We embrace a range of perspectives that may not always align with our own. Believing that open dialogue helps us grow and gain new tools always align with our own. Believing that open dialogue helps us grow and gain new tools. Join me as I share stories of strength, resilience and hope, from personal experiences to expert insights. I'm your host, alana, and this is IndoBattery charging our lives when endometriosis drains us. Welcome back to IndoBattery. Grab your cup of coffee or your cup of tea and join me at the table. I hope this season finds you well. Whether you're celebrating the holidays or simply taking a breather, either way, it's always a good time to recharge not just your body but your IndoBattery.

Speaker 1:

In our IndoYear Reflection series, we've revisited some standout episodes in bite-sized doses Because, let's face it, if you're anything like me, remembering everything from this past year is nearly impossible. But revisiting these episodes has been refreshing, uplifting and packed with nuggets of wisdom. In episodes 84 and 85 with Dr Cindy Mossbrooker are prime examples. Let me tell you her story is nothing short of extraordinary. As the only doctor to have done a fellowship with the late, esteemed Dr David Redwine, she's been at the forefront of a paradigm shift in endometriosis care and excision surgery. But here's the twist when she started, even with her impressive background, she realized she wasn't equipped to handle advanced cases of endometriosis. That's when her mindset and approach shifted dramatically. Take a listen.

Speaker 2:

Before I spent time with him I did not specialize in endometriosis and, you know, occasionally we'd have somebody that had endo and and I'd operate on them and do the ablation techniques.

Speaker 2:

And I had one girl that that had these recurrent cysts in her, in her pelvis, despite having done oophorectomy on her for endometriomas, and I didn't realize what was happening and I didn't know what I didn't know because I'd never been taught.

Speaker 2:

And now I know exactly what was happening with that girl and I wish I could go back and say, hey, let me do your surgery the correct way, because she had an ovarian remnant and we never got the disease out from a retroperitoneal approach. And so I know now what I should have done in some of those cases before I learned what I learned from him. But I will tell you the first I don't know a couple of months that I was there in Bend I would cry when I heard these women's stories about surgery after surgery after surgery and people not treating them right and doctors making the patients feel like they're crazy because the doctors didn't know what was wrong with them. And initially it made me sad and made me upset and then it just made me mad and made me upset and then it just made me mad, and it still angers me when I see 28-year-olds who had normal ovaries removed and they weren't told what the repercussions were of that.

Speaker 2:

They weren't told what their life was going to be like, you know, for the next 25 years, until they should have normally gone through menopause. And the patients who are dismissed because they're just looking for secondary gain, you know, nothing's really wrong with you. You know. Why are you here? Why are you on my doorstep asking for meds? You must be drug seeking, you know. You must be crazy. You must have been raped sometime in the. You must be crazy, you must have been raped sometime in the past and you just don't remember it. So you need to go do psychotherapy. So you, you know, so that you can deal with this. Or you're just stressed. That's why your pelvic floor is tight. There's really nothing wrong with you.

Speaker 1:

Her journey really highlights the stark differences in skill levels and expertise when it comes to treating endometriosis and full disclosure. I may have geeked out a little when she used the baseball analogy to explain the skill sets of surgeons. It's such a relatable comparison, especially for someone like me who loves baseball. While I encourage you to revisit the full episode, here's the heart of the analogy.

Speaker 2:

I kind of look at surgeons like baseball players. I love baseball. I do too. My dad used to take me to. You know, my mom loved baseball too, so we'd all go to baseball games from when I was a kid and you know it's like there's only's only so many justin verlanders yeah, there's only so many doctors who are like a household name and, yeah, they're who you'd want on your team, no matter what. But there's a lot of major leaguers who are. Nobody knows them unless you know. You go to the games all the time and you follow your team. And people like Cal Raleigh, the Mariners catcher. Yeah, he's a great player, but nobody knows him outside of Seattle.

Speaker 1:

Right, you know that's like Charlie Blackman here.

Speaker 2:

Because I mean, there are some people who are like, you know, derek Jeter, a-rod, you know everybody, even people who don't follow sports. They're like oh yeah, I know who, derek J but you don't need Derek Jeter if you have stage one endometriosis, right, you need Ty France, my favorite first baseman from the Mariners. He's a great player, he's a great guy.

Speaker 1:

Stage one is not the minor leagues Stage one in the sense that an excision specialist still needs to address. That's stage one.

Speaker 2:

Stage one is like your routine everyday guy on the Colorado Rockies or the Seattle Mariners that you and I know who they are because we follow the teams but nobody else knows.

Speaker 1:

Yeah, but the minor leagues are the ablation surgeons.

Speaker 2:

Yeah, Triple A. Double A is general OBGYNs who make a mess out of things. General OBGYNs who make a mess out of things.

Speaker 1:

Dr Mossberger also spoke candidly about the complexities of pain. Not all pain is endopain. This is such an important distinction. She explained how central sensitization, where our amazing yet complicated brains hold on to pain memories and can make it feel like we're still experiencing pain even when we've taken the right steps to address it it's like phantom limb syndrome, but with Endo. Let's hear her perspective.

Speaker 2:

Yeah it starts with listening and believing and saying yes, there's something going on with you. I don't know what it is, but I'm not going to rest until I figure it out. But it's hard for some people because they've been so dismissed for so long and they've been told. Well, it's the nerve transmission of potentially painful experiences, but it's not really turned into pain until it's processed in your brain. And so I've had discussions with patients and trying to explain the role of the brain and their history of trauma and their anxiety and how that plays a role in how they perceive pain, and most of I will say most of my patients are like oh well, that makes a lot of sense. But a few of them are like they get really mad and really upset and they think that I'm trying to dismiss them and tell them that you know their pain's all in their head and there's nothing wrong with them. But that's not the point.

Speaker 2:

The point is to say you know, we need to think. When we're taking care of women with endo and pelvic pain, we need to think not only of what's going on in the pelvis, but how is this affecting their brain? How is it affecting their emotions? How are their emotions affecting their pain. What can they do about it? How can cognitive behavioral therapy and other things like this try to ramp down the emotion of the pain? You know, I kind of understand why it's a bit of a slippery slope, but it's also necessary because it's basic biology and it's, you know, how our bodies work.

Speaker 1:

This doesn't mean your pain isn't real far from it but it's a reminder to look at the mental and emotional toll pain takes and how addressing that can be just as important as physical treatments. One of the most powerful parts of our conversation was when she addressed the harm caused by the current standard of care, particularly when it comes to ovary removal. While there are valid medical reasons to remove ovaries and I'm living proof of that it shouldn't be the go-to solution, for endo Removing ovaries doesn't cure endometriosis and this misconception is harming patients. Take a listen to her thoughts.

Speaker 2:

Right now, standard of care is people doing ablations. It's okay for doctors to remove totally normal ovaries in a 25-year-old. If the patient decided to take them to court to say you took my ovaries out, all they have to do is say you signed the consent form Right and it's because it's within standard of care. If somebody has persistent pain and thought to be from endometriosis, it's okay to castrate a 25-year-old. And to me that's not okay in any world and it certainly isn't okay without a very long discussion. Even in my 40-year-old patients who come in and say you know, I really want you to take my ovaries out.

Speaker 2:

I talk to them for a long, long long time about what are you going to feel? You're going to be menopausal, your bones are going to get brittle, your brain is going to get old, your vagina is going to dry up, your bladder is going to be irritable, you're going to have to pee all the time. You're going to be irritable. You're going to have to pee all the time. You're going to be incontinent. All these things are going to happen to your body, not right away, but over time, and your aging process is going to be accelerated. And yes, we can reverse some of that and abate some of it with hormone replacement.

Speaker 2:

But there was a study a few years ago that showed that women who have bilateral oophorectomies prior to menopause have an increased what's called all-cause mortality, which means death by any reason, and giving them hormone replacement will minimize that somewhat and make that increased risk come back towards one which is no increased risk, but it never quite gets to one. It gets close to it but it never quite gets there. And then the other thing that I see a lot is women who've had their ovaries out and they're not appropriately replaced hormonally. So they've got hot flashes, they don't sleep well, they've emotional, they feel like crap and nobody takes the time to say well, you need estrogen, you need testosterone, you might need a little progesterone, maybe, maybe not, but we need to get you.

Speaker 2:

If you're 30 years old and you have no ovaries, you can't just give them a 0.05 patch, which is perfectly fine for a 55 or 60 year old woman, because they're 30, you know, and they're used to estradiol levels fluctuating between 103 and 300 or 400. Whereas when you're 50 and you're about to be menopausal, your average estradiol level is probably you'd be happy at 50. These younger gals, they need a higher dose and they need higher levels and that's just normal and physiologic. But doctors are afraid to do it.

Speaker 1:

What made these episodes so special was Dr Mossberger's passion. We initially planned for like a one-hour chat, but it quickly turned into a three-hour deep dive. That's how committed she is to patient care and advancing our understanding of endometriosis. She ended this episode with a call to action for all of us advocates, providers and patients alike to carry the torch for better care and greater awareness. She reminds us to honor the legacies of pioneers like Dr Redwine and the continued work of Nancy Peterson for Nancy's Nook, while also pushing for new breakthroughs. You can find episodes 84 and 85 on your favorite streaming platforms, and I highly recommend giving them a listen or a re-listen. Thank you for taking the time out of your day to join me here. It's an honor to sit at this virtual table with you, sharing stories, learning together and growing as advocates, not just for ourselves, but for our entire community. Until next time, continue advocating for you and for those that you love.