Endo Year Reflection: #10

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 as we continue the EndoYear Reflection Series. I'm struck by how quickly time has passed and how overwhelming it can feel to fit everything in before the end of the year. That's why I'm taking this time to reflect on the episodes and guests who have been charging our knowledge and offering moments of renewal. Today, we're spotlighting two standout episodes featuring three incredible doctors Episode 77 with Dr Naomi Whitaker and episode 91 with Dr Asarika Bebehani and Dr Laura Liu. Before we dive deeper. I want to offer a trigger warning. In this episode, we'll be discussing infertility. I know this topic can be deeply emotional and challenging, and I wanna take a moment to acknowledge that. If you're walking through the pain of infertility or struggling with the inability to conceive, I wanna send you a warm hug and extend my deepest empathy. You are not alone in this journey and your feelings are valid. Let's continue reflecting.

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These two episodes are among the most downloaded and listened to this year, highlighting their significant impact. I've also received countless messages from listeners sharing how these episodes renewed their hope. Are you wondering why they resonated so much? Well, in episode 77, dr Whitaker shared invaluable insights about infertility and endometriosis. In episode 91, dr Bebehani and Dr Liuaker shared invaluable insights about infertility and endometriosis. In episode 91, Dr Bebehani and Dr Liu tackled the intricate interplay of PCOS, endometriosis and infertility. Though their approaches to care may differ slightly, their passion and commitment to partnering with their patients and addressing endometriosis head-on unite them. When I spoke to Dr Whitaker in episode 77, she emphasized the importance of thoroughly reviewing a patient's history and past surgical images. For example, she noted how blocked fallopian tubes or adhesions in surrounding areas often impact infertility. What struck me was her observation that infertility and pain are rarely caused by endometriosis alone. They're often multifactorial. Here's a snippet of what she shared about identifying these complex issues.

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I look back at their operative reports to see what was done and I go over with them concerns from what was seen, including the potential of adhesions or if they did appropriate adhesion prevention. If they check the tubes with chromoprotubation they may have missed a partial occlusion of the fallopian tube, which is pretty common with endometriosis, and so for that I do a selective hysterosalpingogram which is more accurate than a regular hysterosalpingogram. It's where the x-ray is put above the body and I have an actual cania that goes into the fallopian tube and I have a pressure gauge and it measures if there's a partial occlusion. So I don't want to just see village of dye, I also want to see that the pressure is very low and so that that indicates the tube is wide open. So I check each tube individually and then if there's a partial or complete occlusion I have a guide wire that can run down the tube, kind of like snaking a sink to open it up. I just see tubal occlusion with endometriosis period. Okay, more like or within fertility period.

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You know I'm not sure what the risk factors are If it's congenital, you know, hereditary someone's born with it. If there's endometriosis in the tube, if there's debris in the tube or inflammation related to endometriosis or if it's just infertility as a symptom. Uh, it's hard to say, but I do screen almost all women that come to me who are undergoing surgery. I offer them that because if they haven't tried to conceive it's going to be silent and then they're at increased risk.

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In my opinion, if they likely have endometriosis I do think many times it is probably congenital and treatable and it goes away after that procedure. But I like to offer it to most women undergoing surgery, even if they're not actively trying to conceive, because I've had women come to me with endometriosis. They got excision, they got a lot better. And then they come back to me with infertility because their kids were occluded. And if we had just checked it when they were focused on the pain but they knew they wanted children later, I regretted not offering it earlier. I explained hey, if you haven't been trying, you may not want to do this procedure, but I like to just offer it if they're going under general anyway.

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Right, because it's pretty quick.

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It's very quick, yeah. I rarely just find endometriosis. Typically, you know, you have your pre-op and post-op diagnosis. My post-op diagnosis is very long. It's usually four or five lines, not just different areas of endometriosis but evidence of inflammation or polyps or cervical stenosis or tubal stenosis, adhesions. I look at the liver liver, you know, and I see if there's inflammation of liver, fatty liver. So I tried to do it just a whole assessment of everything that I see for health purposes. Because, as you know, women with endometriosis or pelvic pain or infertility, they're all very complicated and it's usually not this one thing going on. Especially by the time they present 10 years later, after they've been asking for help, things have usually gotten pretty bad.

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Dr Whitaker also stressed that properly addressing and excising endometriosis can significantly improve the chances of natural conception. Hearing her perspective on this was both enlightening and hopeful, but don't just take my word for it. Listen to her insights.

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If a woman comes to me and her main issue is endometriosis, even if it's advanced stage, I mean she has a very high likelihood of success. When you do thorough excision surgery, find it all, even a bowel resection, it really improves fertility rates when needed. And then adhesion prevention, especially with advanced disease. But unfortunately these women often have a lot of other issues going on, especially if they tend to have other risk factors, like if they're older, if they've had a lot of abnormal bleeding, if they are married to, like a man, with severe male factor, and so that's what I talk about in my discussion with these patients. First we do need to find answers. So endometriosis is exciting to find because it's a big answer, and then it's a big process to overcome. That Outcomes are really good, especially if that's your main thing.

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But it's important that we look at everything, including do they have an ovulation defect? So we screen for women who have ovulation defects, and so that means the follicle doesn't grow and collapse. The key is to watch it collapse as well and rupture to make sure that they're actually ovulating and releasing an egg, because there are conditions that make it look like she's ovulating and releasing an egg because there are conditions that make it look like she's ovulating, but she's not really, and so we do an ultrasound series to confirm that she's actually ovulating. Ovulation defects where they don't actually collapse the follicle called luteinized, unruptured follicle syndrome is increased in women with endometriosis, and again that can be silent because their hormones can go up and make it look like she ovulated after that.

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Similarly, in episode 91, dr Bebehani and Dr Liu brought a wealth of knowledge and a holistic perspective to the table. Dr Bebehani's expertise in endometriosis, pcos and infertility helped clarify the nuanced differences and connections between these conditions. She explained how often they coexist and what makes treating them so complex. Let's hear her break it down a little.

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Because this is a question we get asked often in clinical practice is how are endometriosis and PCOS related? We have to remember that endometriosis occurs in about 15% of the population. So not looking at pelvic pain or fertility patients, just in the general population, about 15% of women will have endometriosis and 5 to 15% of the population will have PCOS. So they may not necessarily be caused by the same cause, like in utero, or the same manifestation that created the disease. But because they are both prevalent and common, it is definitely possible for women to have both endometriosis and PCOS. So I often get asked is the endo causing PCOS? Is the PCOS causing endo? No, there are no studies to show that one causes the other. It's just because they're both prevalent. It is absolutely possible for both diseases to co-occur in some way.

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Dr Liu also shared compelling thoughts about the challenges of diagnosing and managing PCOS and endometriosis, particularly in the face of frequent misdiagnosis. Here's what she had to say.

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What I found in my practice is a lot of patients are diagnosed or they come to me and they're like I have PCOS, I have really painful periods, I have heavy periods, and they go through all of these symptoms, saying that they, you know, my doctor told me I had PCS and I was like did your doctor ever mention endometriosis? And they're like no, I, you know. I kind of Googled that on my own and I find that a lot of patients or not a lot, but there are patients who are definitely misdiagnosed and told they have PCOS when actually they have endometriosis. So one of the biggest, or what I believe are the symptoms of endometriosis. So one of the biggest differentiating qualities of the two diseases is PCOS really shouldn't cause pain. It shouldn't cause pain. It shouldn't cause pain. It shouldn't cause bowel symptoms, it shouldn't cause bladder symptoms. It can cause, you know, difficulties getting pregnant, it can cause difficulties with ovulation, but it shouldn't cause pain and I think that's something that can differentiate the two.

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For patients who are kind of wondering do I have PCOS, do I have endometriosis? Do I have both? I think if you have a lot of pain and your quality of life is impaired by your periods, that sounds more like endometriosis to me than PCOS. Now, if you have difficulties conceiving and you don't have any of the other symptoms, with pain or anything like that, that could be silent endometriosis or unexplained infertility caused by endometriosis, or it could also be from PCS. But I think if you have pain, if your primary symptom is pain around the time of ovulation or periods, that's going to be endometriosis.

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One insight that resonated with me is how Dr Bebehani, despite performing IVF, doesn't consider it her first line of treatment. Like Dr Whitaker, she prioritizes addressing endometriosis before pursuing IVF, doesn't consider it her first line of treatment. Like Dr Whitaker, she prioritizes addressing endometriosis before pursuing IVF, as this can sometimes eliminate the need for IVF altogether and addressing endometriosis can potentially prevent further pain and damage. Let's hear her explain why this approach is so vital.

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We wouldn't even proceed with IVF if we had a strong suspicion for endo, because the surgery may save them the cost of IVF. If we do the surgery and we find endo and we treat it, then they may have a good chance of getting pregnant naturally without IVF. And if they don't get pregnant and we still do IVF, their chances of pregnancy with IVF is going to be significantly better than if the endo was still there and we hadn't removed it. And I'm going to add one more thing to the discussion, and I'm not sure if Dr Liu does that or not, but when I have my PCOS patients go in for surgery for endometriosis, I actually will do ovarian drilling, Since I'm there, you know might as well.

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Ovarian drilling is a surgical procedure that was done very often in the older days when fertility treatment was not as available. So we would go in and surgically poke holes in the ovary. Those holes are meant to release that thick layer where the androgens are being produced. Remember I mentioned the elevated male type androgens that we see with PCOS patients. So those are produced by cells called the theca cells. The theca cells are around the cortex, the superficial layer of the ovary. So if we poke multiple holes in the ovary. That's called ovarian drilling and it actually helps women ovulate and overcome that problem of elevated androgens. We don't nowadays take women to surgery just for that, and 20 years ago people used to do that. But nowadays, because we have so much more advancement in medicine, we give them pills rather than, you know, take them to the OR. But if I'm there doing their endo-excision surgery and I know they have PCOS, I will add ovarian drilling to my procedure.

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These episodes are brimming with essential information and hope, especially for those navigating infertility or managing PCOS and endometriosis. The overarching message I took away is this Unexplained infertility is not a diagnosis. There is always a reason, and these doctors offer tools and insights to help uncover it. If you're struggling with infertility, my heart is with you. It's a painful and often isolating journey, but let these episodes remind you that compassionate providers are out there to support you in every step of the way. To hear these episodes in full stream episodes 77 and 91 on your favorite platform.

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As we close out this year and prepare for the next, my hope for you is renewed health and vigor, whether in finding ways to build a family or simply in reclaiming your wellbeing. Make sure to subscribe and turn on notifications for the next endo year reflection, where we'll continue to recharge and build actionable plans for the future. Thank you for spending your time with me today and throughout the year. Remember you're not alone. You matter and so does your journey. So until next time, continue advocating for you and for those that you love.