Tongue Tie, Trauma, Menopause & More: Your EDS Questions Answered with Dr. Dacre Knight

[00:30] Dr. Linda Bluestein: They end up gaslighting you, and now you feel even worse than you did before. Now you have the medical trauma on top of everything else. But we have this conversation that you and I had in the past about pain begets pain. I wonder if also trauma begets trauma. Like, if you have had more trauma, does that then make you more sensitive to future trauma?
[01:06] Welcome back, every bendy body, to the Bendy Bodies Podcast. I'm your host, Dr. Linda Bluestein, the Hypermobility MD, a Mayo Clinic-trained expert in Ehlers-Danlos syndromes. I'm joined once again by my friend, colleague, and recurring co-host, Dr. Dacre Knight, Medical Director of the UVA Health EDS and Hypermobility Disorders Center. Through our ongoing partnership with UVA Health, we're bringing you practical, evidence-informed strategies that improve the everyday lives of people with joint hypermobility, connective tissue disorders, and related conditions.
[01:34] Today, we're going to be answering some of your questions. We'll be talking about tongue tie, pregnancy, menopause, hormones, local anesthetic systemic toxicity, and so much more. This podcast is for education only, and it's not a substitute for personalized medical advice. Here we go.
[01:52] Well, I'm so excited to be back with Dr. Dacre Knight, who is the Medical Director of the UVA Health EDS and Hypermobility Disorders Center. How are you doing today?

[02:03] Dacre Knight: It's always a pleasure to be here with you, Dr. Bluestein. Thank you so much.

[02:07] Dr. Linda Bluestein: Yes, absolutely. So we're going to address some listener questions today. We get so many great questions, and I do want to tell people before we even start on this, please send your questions to bendybodiespodcast.com. And when you're there, you're going to notice that the website is a little different. There are some enhanced search features and hopefully it's going to be easier for you to find transcripts. The transcripts are hopefully more accurate. We're really working on trying to make this information as accessible as possible. So please go to bendybodiespodcast.com and send us your questions. We would love to hear from you. We want to answer the questions that people are most interested in.
[02:46] So we're going to address some fan questions today. Dr. Knight, if you have other questions you want to throw in here, I have some already written down, but you're welcome to — if there are things that you're thinking, oh my gosh, this past week I got asked this thing five times.

[03:01] Dacre Knight: Well, in my experience, the fan questions have been very good. So I think we'll have a lot of material to go through.

[03:07] Dr. Linda Bluestein: Yes, most definitely. Okay. So the first fan question is from Samantha. Samantha says, "I was just evaluated for a tongue tie and am pursuing a release. I welcome any improvements to my quality of life. I've read about EDS folks having this done and having fewer headaches and migraines, less coat hanger and neck pain, and less TMJ-related issues, just to name a few benefits. I was wondering if you could do an episode on adult tongue tie."
[03:32] And just so you know, Samantha, this is not going to be an entire episode on tongue tie. We're going to cover this on a more broad level and speak from our experience. And I also want to mention that if anyone knows somebody who would be a great guest for this topic, please go to bendybodiespodcast.com and send us a message.
She continues: "It was mentioned in the most recent fascia episode, which sent me down a rabbit hole. I listened to a podcast from a pediatric chiropractor who said tongue and oral ties are a secondary compensatory downstream issue of a primary dysfunction — subluxation of the nervous system — i.e., dysautonomia. I found that fascinating and I only heard him link it to nervous system dysregulation pre-birth. This tracks for me personally. I'd be very curious about what you have to say."
[04:26] A lot of different things to potentially unpack here. I'm going to let you go first. I'd love to hear what you've heard about patients with tongue tie, what your experience is, if some of them have had release, and then also this very interesting comment she is making — something she heard from a chiropractor.

[04:46] Dacre Knight: Yeah, it's a good question, Samantha. And I would love to hear what other experts in this field — otolaryngologists or oral surgeons — have to say, because I haven't really thought or heard too much about it until recently. This topic did come up in conversation with some other colleagues of mine. The condition of tongue tie and ankyloglossia seems benign or not really an issue until maybe it is. We do encounter patients with EDS and hypermobility who have swallowing difficulties and dysphagia, breathing issues, sleep apnea — maybe there's some involvement there. The data is not really strong on this in this group, though.
There may certainly be some research opportunities to dig in a little bit further — to understand how different cohorts of patients, those with and without tongue tie, play out. And then on the question of tongue tie release, which is actually a pretty minimal intervention with usually a pretty quick healing process — there's not much vasculature at the frenulum underneath the tongue if it's done correctly — any time there is surgical intervention and we're cutting tissue in patients with connective tissue problems, there is obviously a little bit of extra concern about how they're going to heal.
[06:24] So in my personal practice, I would want a little bit better data to know that tongue tie release is really going to contribute to better swallowing and breathing and things like that before I wholesale send patients to the surgeon to investigate it further. But I can see where it could be a good opportunity for further investigation.

[06:49] Dr. Linda Bluestein: Yeah. And it's interesting because we also know that changes in the frenulum — the absence of the inferior and lingual frenula — are also findings in people with EDS that can be considered diagnostic, at least in some. There's a paper that talks about using this as a diagnostic criteria in French patients that I came across when I was looking some things up for this conversation.
[07:14] So it is so fascinating to see these things that are potential variants and/or perhaps more common. I wonder if we could comment too on some of these things that are more common. If we think that hypermobile EDS and HSD are actually quite common, it's true, isn't it, that it's harder to demonstrate that those things co-occur more commonly than if you're trying to associate two rare things — from a statistical standpoint, from a research standpoint. If you were trying to show that people with, say, some rare change to their fingernails are more likely to get some very rare kind of cancer — I think that's easier to demonstrate than something like hypermobility spectrum disorder or hypermobile EDS, which we know are much more common in the general population than we ever thought. And so then something like tongue tie, which I believe is also quite common, might be hard to demonstrate as being more prevalent or not. What do you think about that?

[08:20] Dacre Knight: Yeah, that's right. And we also run into so much confounding with patients with EDS and hypermobility problems because there are certainly many other reasons why someone can have issues — sleep apnea, breathing difficulty, swallowing problems — beyond tongue tie alone. And so it is difficult when we're doing research on any specific condition or comorbidity, because there's so much overlap. We'd have to be really mindful about sample sizes. Obviously, we want to get the largest sample size possible to isolate for as much confounding as we can. And it's hard to get large sample sizes at one institution, so you'd have to think about multi-site studies for these things. And then, even if we do, is this a high priority item to study? Maybe there are some other research interests we have before going down the tongue tie rabbit hole. But in an ideal world, we have access and availability for all of those questions to be answered.

[09:29] Dr. Linda Bluestein: And I think the issue is also related to potential fascial connections, fascial restrictions. And I know that this is more anecdotal, but the people that I've spoken to in the physiotherapy space — and as you said, it would be fascinating to get an oral surgeon's perspective on this — you also have to be careful: if you release a tongue tie and somebody has CCI, or craniocervical instability, you can actually make that worse, is my understanding.
[10:02] I had a patient who went to a center in Wisconsin, not far from where I've practiced. They went through a whole strengthening program of the whole mouth, pharynx, tongue, and all of that, and then they did the tongue tie release. She had really good results from the standpoint of her sleep apnea, mouth breathing, snoring, and clenching — and it did not make her neck any worse. So I think there's a lot to consider, and programs that are more holistic like that are probably better than ones that just snip, snip. And especially if they snip on everybody, you want to make sure they're being selective in who they do this on and that they understand the other ramifications.

[10:47] Dacre Knight: Yeah. A lot of the tongue tie release happens in newborns, when there's concern about feeding and latching difficulties. And it's hard to get research data collected on newborns and infants when you're not able to get a lot of feedback, right? You can maybe get feedback on the feeding mechanisms and things like that, but when we're talking about things like autonomic dysfunction and symptoms of CCI, you'd obviously have to do that in an adult population.

[11:18] Dr. Linda Bluestein: And then she also made the statement about tongue tie being a downstream issue of, quote, subluxation of the nervous system, or dysautonomia. I'm not sure what she meant there by subluxation of the nervous system. Dysautonomia we know is dysfunction of the autonomic nervous system. Have you ever heard anyone talk about a connection between dysautonomia and tongue tie, or this comment? Any thoughts?

[11:49] Dacre Knight: That's the first time I've heard that.

[11:51] Dr. Linda Bluestein: Yeah.

[11:51] Dacre Knight: But there's a first time for everything. And we know that dysautonomia may be triggered and may be sensitive to so many other conditions. So it wouldn't be the furthest thing out there that could be contributing.

[12:05] Dr. Linda Bluestein: Okay. So the bottom line — thank you again so much for the question, Samantha — the bottom line is yes, it might be helpful for some people. The orofacial myofunctional therapy before and after can be helpful in addition to the procedure. Definitely want to assess for TMJ dysfunction, cervical issues, and as Dr. Knight mentioned, sleep, airway, and disordered breathing. Okay, love that question. Good to move on to the next one.

[12:36] Dacre Knight: I'm ready, Dr. Bluestein.

[12:37] Dr. Linda Bluestein: Okay, great. The next question is from Brooke. "Hello, I'm still in the process of being diagnosed, but I suspect I have hypermobile EDS or HSD. I've been listening to your podcast and realizing how many symptoms I thought were random are probably linked. My question is regarding hypermobile EDS in men. I know that women seem to be more impacted by the hypermobility aspect due to testosterone and increased muscle strength in men. However, I've been looking at my brother who isn't hypermobile in his joints necessarily, but he has other issues with pain, dizziness, et cetera, and wondering if he could have it. Is it possible for someone to not be extra bendy, but still have symptoms that point to a connective tissue disorder? And how would you go about addressing that with a doctor?"

[13:21] Dacre Knight: Well, I love the question because I love any discussion about outliers and unusual presentations. And it's not to say that men are unusual to have these things — they certainly can and do — but we know that time and again these have been studied, and women far outnumber men as far as presentation and diagnoses go.
[13:50] Those groups that come with unique presentations, whether it's really severe symptoms or severe surgical complications and things like that — those groups really inform us a lot. When we're looking at men, for example, the question was raised about sex hormones. There's a unique makeup of male sex hormone endocrinology that is very informative in terms of how it presents. I think there are also just general genetic and developmental differences between men and women that may not even relate to sex hormones that can contribute to their presentation or symptoms.
[14:46] We certainly know that there are plenty of men with hypermobility and diagnoses of EDS and HSD, not as many as women. But to answer the question — yes, the symptoms could point to a connective tissue disorder in your brother, Brooke. And how would you go about addressing that with a doctor? Well, I think you start with an initial evaluation as we would with any patient: talking about clinical history, what is the chronology and trajectory of symptoms, and what does the exam look like? There are some differences in some of the tissue features we look at between men and women. Obviously men would not have some of the types of pelvic organ prolapse, but there's certainly enough to be investigated, I would say.

[15:44] Dr. Linda Bluestein: Yeah, thank you. And I would add to that — first of all, the things that Brooke commented on regarding dizziness and pain, those could be related to POTS, right? Postural orthostatic tachycardia syndrome. We're obviously not going to diagnose her brother — we haven't seen him, we don't know what else is going on. But definitely a person could have POTS without EDS, even within the same family. We know that POTS can occur in a whole lot of different ways, or being somewhere on the dysautonomia spectrum, having orthostatic intolerance, or something like that. And that could be post-viral, as I discussed very recently in an episode with Dr. Stevens.
[16:26] So it is very possible that her brother has POTS or orthostatic intolerance but does not have EDS or HSD — that's one possibility. Another possibility involves what did he look like before puberty? Because we know that puberty greatly affects males and females differently, and that males going through puberty will have higher levels of testosterone. That is beneficial from the standpoint of increasing muscle mass, which is not only protective of joints but also potentially protective of weaker ligaments and tendons. If they have more muscle bulk, their joint range of motion will appear to be — and will actually be — less.
[17:06] So I think it would be interesting to know what he looked like before puberty. We can't go back and do an exam back then, but maybe asking some of those five-point questionnaire questions — can you now or could you ever touch your thumb to your forearm? Can you now or could you ever do the splits? — some of those questions I think might be helpful too.
[17:25] So let's move on to the next one. This is just a comment from Beth. "I'm the mom of a 15-year-old with hypermobile EDS, POTS, and suspected MCAS, and your podcast has been invaluable as we've navigated her care. One of the most helpful concepts has been your 10% rule — that several small improvements can add up to meaningful progress. It's really changed how I think about managing her symptoms. When my daughter is struggling with pain, nausea, migraines, GI issues, or joint dislocations, I no longer expect one treatment to fix everything. Instead, we combine things like heating pads, salt, braces, and ice, and sometimes those small supports together make a real difference. I also appreciated your discussion about the pros and cons of social media. While I always verify what I read, the EDS, POTS, and MCAS parent groups have helped me learn about treatments, products, and important issues to discuss with our providers, like the fact that menstruation can trigger POTS flares. Thank you for everything you do."
[18:20] So thank you so much, Beth, for the kind words. Dr. Knight and I had two episodes recently on the PMMS treatment method that I talk about a lot. I love the 10% rule. Do you have anything to add to that, Dr. Knight?

[18:38] Dacre Knight: Yeah, I agree, Dr. Bluestein. It's like we were talking about recently — there's just small wins, right? Which I think Beth, you're touching on, and that's really what we're going for, because Beth describes exactly what the reality is for many families managing all these things: hEDS, POTS, suspected MCAS, migraines, stomach problems. It's rarely one problem with one solution, right? It's usually a system that needs multiple small supports layered together — all the modalities, supplements, or anything else that we can really dig into. And yeah, that 10% rule — I agree. It's about changing expectations in a helpful way. In chronic complex illness, we often do not find a single treatment that gives 80 or 90% improvement, but we may find a few things that each help with 5 to 10% better. And those added up over time can really make a more profound impact. That's what we want.

[19:45] Dr. Linda Bluestein: Yes. And I do want to add one other thing about flares. I know for me, as much as I treat people with these conditions and coach them and do this podcast, if I get a flare of something, I often forget my basic tools. I often forget some of the topical things I might have, or using heat or ice. So I think that having your flare toolkit prepared ahead of time can be really, really helpful — identifying in advance what are the things that I have, what are the things that are readily available, what are the things that maybe I should purchase in advance or have in my home or wherever I might be living? Because sometimes it's really hard to remember when you're not feeling great. It's hard to remember some of these little things that we have available to us.

[20:37] Dacre Knight: Yeah. And Dr. Bluestein, I was just going to add one more point to Beth's comment, because I thought it was very thoughtful about social media. We've discussed this before and how it can absolutely be a double-edged sword. And what we're doing together with this podcast, it goes out on social media, right? So there's a lot of good that it can be. And even if I hate seeing my face pop up on my feeds every once in a while — I know it's there for others — it is helpful. But to Beth's point, there's also plenty of misinformation out there that can create anxiety. So this is what we're fighting against. We want the good sources of information to be available for patients. The key is not to treat social media as medical advice, but as a source of ideas to verify and work through with your healthcare team.

[21:29] Dr. Linda Bluestein: Yes. And we're all always learning, right? We could easily say something on the podcast that turns out to be untrue later. So I think it's so important for people to verify information as much as they can, get good credible sources and diverse sources. And yes, social media is a very tricky place. That's really funny what you said about your face popping up. I especially felt that way in the beginning. It can be a little jarring.

[21:55] Dacre Knight: Yeah. Just reminding myself — it's there to help others. That's what it's all about.

[22:00] Dr. Linda Bluestein: Yes. And the feedback has been wonderful. So we definitely want you to keep doing what you're doing. Okay. So the next question is from Nicole. This is one that probably we both have gotten quite frequently. "Hi, I am an avid listener of the podcast. I have the trifecta myself, plus many comorbid conditions. I also hope to start family planning soon with my husband for our first child. Can you do more episodes on pregnancy with hypermobile EDS, POTS, and MCAS? I have only seen one that you have done, and it left me wanting a lot more."
[22:31] So first of all, I want to say, Nicole, I definitely would like to do an entire episode on pregnancy. If you or anyone else has a suggested guest, please reach out — Dr. Knight may also have some ideas we can discuss offline. But I thought at least you and I should address this because I'm sure you get asked this question all the time. I know I do. And I was curious how you handle this conversation with your patients.

[22:49] Dacre Knight: I do get asked this quite often. You're right, Dr. Bluestein. And it's a very important question — these are big things that patients are going through. And I do think that sometimes it's neglected. Patients are sometimes just told either, "You'll be fine," or, "Pregnancy is too risky, so don't even bother." And I just don't think that's nuanced enough. The problem again remains that there's just a lack of knowledge to share with patients and a lack of understanding out there, sometimes in the medical community as well.
[23:28] The first message I tell patients is that the vast majority of people with hypermobility disorders and hEDS have successful pregnancies and births. So the goal is not to create fear, but to make sure we're planning thoughtfully. And so preconception is where that begins — working with the obstetrics team or a maternal fetal medicine specialist, and coordinating with other clinicians who are helping manage things like POTS and MCAS and so forth. There's a lot of things that can be on the table, but I think that's the way to approach it to start.

[24:12] Dr. Linda Bluestein: And the big thing that I usually really try to talk with people about is: how are you doing right now? If you're having high levels of pain every day and you're considering a pregnancy, that's a very different situation than if your symptoms are well controlled and well managed and you're wanting to start a family. Do you have the financial means — not that everyone should have to have a lot of money to have a baby, but we know it is expensive. Do you have the psychosocial support that you need? Do you have relative stability of your symptoms, or at least feel like you have a handle on things?
[24:50] To me, that makes a huge difference as compared to somebody whose symptoms are really, really out of control. It's not to say that person can't have a baby, but adding a pregnancy on top of that would be very, very challenging.

[25:04] Dacre Knight: I think the main message I would want patients to hear is that pregnancy with hEDS and hypermobility problems, POTS, mast cell activation, and all that should not be approached with too much fear or dismissal. I think with all the right preparation and teamwork and expectations, it can go very well — and it does go very well for the vast majority of patients.
[25:30] Just a couple of quick pointers I give: one, if you can get engaged with pelvic floor physical therapy early on or during pregnancy, that's a very good one. And also, just understanding that there may be some spotting that happens a little bit more often in patients with connective tissue disorders — not to any really catastrophic level, but just be aware of that. And then also, labor can progress quite quickly. So be where you need to be when you're getting ready for delivery — you're not out in the woods somewhere. And obviously, if labor goes quickly, I think most people would prefer that.

[26:14] Dr. Linda Bluestein: Right. Yeah, that's a good point because it can involve multiple different experts sometimes. In addition to a pelvic floor physical therapist, you might also have a cardiologist involved. That's when I saw my first cardiologist and got my first diagnosis, actually — I got the diagnosis of dysautonomia during pregnancy. Before I even knew that I had hypermobile EDS; it wasn't until quite a few years later that I learned that. So when I was pregnant, I did not know that I had hypermobile EDS, but I did go on beta blockers during my pregnancy because I was having so much tachycardia, which by the way did not present as tachycardia — it presented as shortness of breath. And I have asthma, so they kept thinking it was asthma, but it turned out it wasn't.
[26:55] So yes, these things are definitely very multifaceted. And it's also a good idea to talk to other women who have lived through pregnancies and are similarly situated.

[27:08] Dacre Knight: Or differently situated, you know — like you said, you had some different scenarios. So we have to take it with a grain of salt that there are certainly any number of eventualities, but that's why we'd want individualized care one-to-one.

[27:25] Dr. Linda Bluestein: Okay. We're going to take a quick break and when we come back, we are going to address a few other maternal-fetal questions. We had a couple of other questions related to this previous one. So we'll be right back.
[28:24] We're back with Dr. Dacre Knight, and we are answering fan questions. So we had a series of questions that are kind of related, and I lumped them all together. The next question is from Macy. She said, "I've been listening to your podcast for the past month and I'm so grateful for the knowledge you share with others. Question for you — have you noticed any correlation with EDS, POTS, MCAS patients and being born premature? I am curious. I was born six weeks premature, only weighing two pounds four ounces, and had a lot of challenges throughout my life. I am having a hard time trying to get a diagnosis but have had years of symptoms. I'd be curious to hear your thoughts."

[29:01] Dacre Knight: Yeah, this is a very interesting question, Macy. And I think this does go into a bit of what we were just talking about — pregnancy and prenatal care and all those things that can happen during pregnancy. One of those, and why we mentioned pelvic floor therapy, is trying to avoid risks for pelvic floor dysfunction and pelvic organ prolapse postpartum. And there's a question too about whether having pelvic insufficiency and things like that during pregnancy might mean earlier onset of delivery or premature delivery. I don't know that there's much data on that — I think it's a reasonable hypothesis. But altogether, I don't think there is strong evidence that prematurity causes hEDS, POTS, or any of these other things, or vice versa, as far as we know. It's a very good question, though, I think, with some good biologic and physiologic basis to it.

[30:06] Dr. Linda Bluestein: And as you said earlier with the tongue tie question, this would be a great thing to study if we had unlimited money and unlimited resources. There are so many questions. But as you said, you know, really focusing on the key questions — which, I'm going to digress for a second because I know that you're doing amazing research at UVA Health. I would love to know, since you started, if there are any research projects that you can share with us that you think are addressing some of these key questions. Is there anything you can share that you're working on?

[30:40] Dacre Knight: Well, there's so much that we're working on. We had just received some funding to understand mental health problems in EDS and HSD. This came from a generous donor who unfortunately had a tragic family situation where there was really severe mental health illness in a patient, and they just wanted to fund some research to understand that.
[31:02] And what we're talking about is not directly related to mental health, but we're talking about all of these things that can be going on that certainly are taxing to someone's mental health. These things can start early too — going back to talking about early childhood development, but also abuse and trauma and things like that. So we're just launching into that.
[31:27] And there's so many other things that go on with it as well. This is a good question too when we talk about prematurity. There is some research we may want to plug into further — understanding that adolescents born preterm may have some differences in autonomic function or heart rate variability, because that's relevant to POTS and autonomic disorders. So prematurity may not necessarily explain hEDS, but it could influence some of these other associated things like autonomic regulation and other vulnerabilities that happen later in life, whether mental health or otherwise.

[32:13] Dr. Linda Bluestein: Okay. And before we move on to the next question, I want to just touch on what you were just talking about. Trauma is definitely something that — nobody goes through life without some kind of trauma, right? But there are all kinds of different degrees. Is that something that you observe more in your patients than you think the general population experiences? And do you have any theories about that, and/or ways that you address it — either in patients or in suggested things that people listening to this can do? Because I certainly see this a lot in my patients and clients, and hear about it a lot from followers on social media and listeners of the podcast.

[32:52] Dacre Knight: Yeah. The short answer is we do see it more often in our patients. That's the initial data that we're reviewing, and it is coming back with higher numbers. It looks like they are significant — the history of trauma and abuse for our patients with a diagnosis of HSD and hEDS. Why that is — that's the natural next question, and I don't know.
[33:16] At our research symposium, we had one of our speakers, my colleague at Mayo Clinic, Dr. Shilpa Gajrawala, who touched on this a little bit and brought up some interesting hypotheses about how it ties into susceptibility to trauma, whether that's physical or emotional. Because patients are really in a desperate situation when they're enduring these symptoms, not getting care, not getting validation. Does that desperation kind of lead down a difficult path? We have some very fortunate situations where patients really persevere, stick through it, and finally get the care — and that's nearly miraculous. But then obviously there are plenty who aren't able to take that higher road, and they end up going from one bad situation to the next. And that may ultimately end up involving abuse and trauma, unfortunately.

[34:16] Dr. Linda Bluestein: Yeah. As you were saying that, I had an interesting thought because, as we've talked about before, part of the reason why early recognition is so important is because that medical trauma can really add up, right? You go to one appointment and they don't believe you. They don't listen to you. They don't seem to care what you have to say or what you suspect. And so they end up gaslighting you, and now you feel even worse than you did before. Now you have the medical trauma on top of everything else.
[34:45] But we have this conversation that you and I had in the past about pain begets pain. I wonder if also trauma begets trauma — if you have had more trauma, does that then make you more sensitive to future trauma?

[34:59] Dacre Knight: I think that's an excellent question and a reasonable hypothesis. Maybe it's not even necessarily trauma that's leading to more trauma, but it's the situation that causes the initial trauma — and that situation is not being resolved. That cycle just continues.

[35:18] Dr. Linda Bluestein: Yeah. And like it primes the brain, just like pain primes the brain also. I'm curious to ask you before we move on to the next question — do you have any thoughts about stellate ganglion blocks for dysautonomia, and/or for people who have experienced trauma, have PTSD, and/or any of the vagal stimulator devices?

[35:40] Dacre Knight: Yeah. There is certainly a role for both of those — ganglion blocks and vagal nerve stimulators and any number of modalities, which we've discussed previously on the show. It's just a matter of understanding the right setting, the right individual, and what they have and have not tried, or associated comorbidities and things like that. A ganglion block is a little bit more invasive than an external vagal nerve stimulator, so we may take that as a second or third or fourth line after some initial steps. But there certainly is a role.

[36:20] Dr. Linda Bluestein: I wish we had more data about the stellate ganglion blocks. So this is where you put a needle into the neck and you're aiming for the sympathetic ganglia and injecting some local anesthetic and/or steroid there to try to calm down the sympathetic nervous system. I realized I should have defined it first — a lot of the listeners are going to know what that is, but it makes sense to clarify.

[36:39] Dacre Knight: Thank you for defining it.

[36:40] Dr. Linda Bluestein: Our listeners are very sophisticated, but not everybody knows what all of these things are. Okay. Let's move on to the next question. This is from Amy. She said, "So happy to have found you and your podcast. I've done a deep dive into EDS, POTS, MCAS, pelvic venous pooling, et cetera, because my daughter has all. I'm trying to find information on irregular uterine bleeding related to MCAS and connective tissue disorders. I think I have both, and I am postmenopausal with negative biopsy and all other tests normal. Any chance you could have a guest to interview about MCAS and EDS in postmenopause? I'm unsuccessful getting my primary and my GYN any information relating to postmenopausal women with MCAS and connective tissue disorders. Thank you."

[37:27] Dacre Knight: Well, Dr. Bluestein, the guest and episode recommendations just keep coming in. So I think we have a good lineup for future episodes, and I certainly agree this would be a very good one. I know a couple of people who come to mind — Dr. Shilpa Gajrawala, who I mentioned, would probably have something to say, and I know some others too in the field of women's health, gynecology, and menopause management.
[37:54] It's a very good question, and we do see these things come up a lot. The first point I would make is that postmenopausal bleeding should always be evaluated through standard gynecologic pathways first, before we think about anything else — EDS, POTS, or anything else. But this is exactly the kind of topic that deserves more discussion. How does EDS, and all of these issues — pelvic venous issues and other gynecologic things — intersect with menopause and everything else? Many patients feel like they're living at the edge of several specialties, bouncing around between them. And it's difficult if there is no single clinician putting the whole picture together — that certainly adds a layer to it.

[38:43] Dr. Linda Bluestein: We've talked about menopause, we've talked about hormones. We definitely need to do an entire episode on menopause for sure. And I really appreciate what you said about definitely not automatically attributing postmenopausal bleeding to one of these conditions, because you definitely need to rule out cancer and polyps and all these other things.
[39:06] We also need to do an episode on endometriosis. I would like to do an entire episode on endometriosis as well, because we know that this is something that affects a lot of people. I did not realize until I started seeing more patients and talking to more people about their endometriosis — thank God this is not something I ever had to deal with — how significant it is, how much they suffer from it. Is this something that you see a lot in your patients?

[39:31] Dacre Knight: Oh yeah, that's exactly what I was going to say, Dr. Bluestein. And it is something I see very often, and it is a very difficult condition, as anyone who's suffering from this will tell you. And it's often very elusive, and treatment is often unsatisfactory and prolonged. So, thinking about causes of bleeding and endometriosis and things like that, I'm glad you mentioned it, because thinking about this specific case that Amy brought up — that's a question where, going to a gynecologist, how do you rule in or rule out endometrial causes as step number one? Because that is very common in our patient population. So, was biopsy done, and if so, was it adequate? Is there a need for further evaluation with hysteroscopy — meaning actually visually looking inside the uterus?

[40:28] Dr. Linda Bluestein: Yes. And if you've already mentioned some options, but anyone out there who knows somebody who would be a great guest to do an entire episode on endometriosis — as you just said, it's challenging because there are people with incredible expertise in that space. It's that intersection that we're really looking for, ideally.

[40:53] Dacre Knight: Yeah, exactly — connecting all those pieces together.

[40:54] Dr. Linda Bluestein: Exactly. And I'd want to say one other thing before we leave this topic, and I'm curious to get your experience on it. In my experience, perimenopause tends to be way worse than menopause. The perimenopausal period, when your hormones are kind of all over the place, is very often worse than post-menopause when things have stabilized out. And of course some women do go on hormone replacement therapy — not everybody; it's not necessarily appropriate for every single person — although we know now that there are a lot more people who are probably candidates than we thought after the, you know, Women's Health Initiative and all of that debacle.

[41:36] Dacre Knight: We've come a long way.

[41:37] Dr. Linda Bluestein: Yes, we've come a long way. So do you see in your patients that perimenopause is just a really rough time?

[41:44] Dacre Knight: Yeah. I agree 100% with you, and I think it is akin to some of these other situations where there is a lot of unpredictability and a lot of lack of understanding — to know, is this perimenopause or is this something else? It's kind of a newer thing in terms of broader awareness, so there's sort of an algorithm you have to go through, and all the differential diagnoses that you have to consider. And perimenopause may just be looped in with a group of a dozen other things. So it's hard to pin down. That added frustration and uncertainty is a very big, difficult part of it.
[42:29] I would probably get someone involved from a women's health or gynecology background and see to it that all of those steps are taken accordingly — whether it's other imaging or testing, or anything else we can do to try to narrow down what the causes are at hand.

[42:49] Dr. Linda Bluestein: And we have a related question from Michelle that I think we'll just touch on a couple of things. She asks, "Could you discuss the conflict between hormone therapy — estrogen, progesterone, and testosterone — for menopause and EDS, and how to find physicians to treat those conflicts? For example, estrogen is great for menopause, but not so much for EDS. Same with progesterone. Both can cause issues with tendons, muscles, and ligaments for EDS folks, but help with menopause. It would be helpful to discuss how to manage the conflict."

[43:21] Dacre Knight: Yeah, thanks Michelle for asking that. I would start by just validating the conflict — it's real. This is an important question because it captures what many patients experience: that menopause symptoms may improve with hormone therapy, but some patients with EDS or hypermobility feel that certain hormones worsen joint instability. And just like we were talking about with pregnancy, the majority of patients do just fine. But some may have complications that we didn't expect. So it's not just a blanket yes or no answer, and obviously that adds more tension for the patient — and it deserves really thoughtful conversation.

[44:15] Dr. Linda Bluestein: And the only other thing I was going to add is just to be aware of clinics and practices that are never or always. There are clinics that are always going to prescribe hormones — I say they're just selling hormones, prescribing them to everybody. And then there are other clinics and practitioners that never prescribe them. What you want is somebody who's thoughtful, who's really going to look at your various risk factors for different cancers, your family history, the symptoms that you're experiencing, and really — with shared decision-making — very thoughtfully go through and assess what would be best for you.

[44:57] Dacre Knight: Right. And as I mentioned, it's hard to say it's just a yes or no answer. Even regarding estrogen, for example, I would be careful saying that estrogen is universally bad for EDS, because there are many important benefits for menopausal symptoms — hot flashes, sleep issues, and all the other things that we've had greater and better application for. I worked with some very good menopause doctors at Mayo Clinic, and they'll be the first to tell you that it really is the most effective treatment for vasomotor symptoms and other genitourinary symptoms of menopause. And certainly risks do vary from individual to individual, and all of those have to be considered closely.

[45:43] Dr. Linda Bluestein: Yeah. And estrogen is helpful in moderation for tissues — your skin, your connective tissue. So yes, I appreciate that you pointed that out, that the comment that estrogen is bad for EDS is not — I wish more things in medicine were clear cut, but most everything is very nuanced.

[46:05] Dacre Knight: We're in the wrong field if that's what we're looking for.

[46:08] Dr. Linda Bluestein: Good point.

[46:10] Dacre Knight: But that's why we do what we do — because we're interested to learn more and share our knowledge.

[46:18] Dr. Linda Bluestein: That is an excellent point. Okay. So our next question is from Amanda. She says, "Hello, I'm a nephrologist who was recently diagnosed with Ehlers-Danlos syndrome after a complicated history with multiple bowel obstructions over the past three years and now bilateral vestibular dysfunction. I've found there's a lot of misunderstanding and misinformation out there about the condition, but your podcast is a breath of fresh air. I'm interested in how to become a better advocate for others and myself to learn about the disorder. Is there a better way to communicate with you? Thank you for your time."
[46:49] So Amanda, thank you for your question. And is there a better way to communicate with me? I wanted to mention a couple of things. This is exactly why I started the Bendy Bodies Podcast — so that we could share information with a wider audience and people can listen and re-listen and access the transcript. And I've shared this hack before: if you're limited on time, take the transcript, stick it into AI, copy and paste it in and ask AI to give you a summary. Especially if you have a particular background, you can ask it to give you a summary framed for that background.
[47:24] I started the podcast for that reason, and I know that there are so many clinicians who listen. So that's really reassuring to me. When I went through the questions for today's episode, so many were from clinicians, which is really great to see, because of course they can affect even more lives. I want patients to listen also, but it's really great to have that. And I also moved into the coaching aspect and the mentorship and things like that, because there are a lot of people out there who would like that kind of help. Of course, there are also the EDS Society ECHO programs, and I know that you do a lot of education through UVA Health. Dr. Knight, are there other things you want to share — ways that people can learn?

[48:08] Dacre Knight: Yeah. And I think you're exactly right, Dr. Bluestein — it's the multiplier effect. We want to reach those who will reach as many others as possible. Physicians and other clinicians are a great bridge for that. But also patient communities too — we were just talking about social media. Hopefully those social media discussion forums are drawing from the better resources and knowledge that is out there. The EDS Society has ECHO programs, global learning conferences, and things like that — those are very good sources of information.
[48:53] And you mentioned AI tools — I think that's another good way of using it. If a research article is too dense for you, just plug it into your favorite model and you can get a summarized, more understandable version.
[49:11] I do appreciate Amanda's comment here, because as a physician yourself, it must be both validating and frustrating at the same time to experience the diagnostic journey from the patient side — but also to be up against the barriers that we know are there and are real, even for your own patients. It's very difficult, and I can certainly sympathize with that.

[49:42] Dr. Linda Bluestein: Yeah. I have a shocking number of nurses, physicians, physician assistants, and nurse practitioners in both my coaching practice and as patients. And I can't tell you how many times I have heard: "If I am having this much trouble navigating the system, if I am having this much trouble with gaslighting, how is a non-medical person supposed to cope?"

[50:06] Dacre Knight: Right, exactly. It is terribly frustrating. And I can imagine — the times I'm banging my head against the wall and just not making any progress with other clinicians and specialists that I'm trying to get patients to be helped by — if I'm running into that, goodness knows it must be so much more difficult for the patients themselves.

[50:27] Dr. Linda Bluestein: Okay. Next question is from Lilith. And remember, submit your questions at bendybodiespodcast.com. We would love to address your question on the next episode. Okay, so Lilith asks this question.
[50:39] "I recently had a kidney autotransplant for Nutcracker syndrome. I received TAP blocks for post-procedure pain management. I received the TAP block right before I was wheeled into the operating room. And as I was being set up for surgery and put to sleep, I tried to tell the people around me — the nurses, anesthesiologists, et cetera — that my tongue was feeling numb. After surgery, I continued to experience tongue numbness, which seemed to worsen each time I received oxycodone alternating with Tylenol. My tongue was not visibly swollen, but felt swollen. I also experienced tongue numbness when I received a hilar renal block that was done as part of my workup for Nutcracker syndrome. In both situations, I let healthcare providers know what I was experiencing. In the case of the renal hilar block, they suggested that maybe some of the local anesthetic had entered my bloodstream, as they saw a drop of blood, and they thought that I was experiencing a vasovagal response. And in the case after my Nutcracker surgery, no one knew why I was experiencing tongue numbness. What could be the cause of this? It's made me more cautious with receiving blocks of any kind."

[51:45] Dacre Knight: Well, I will certainly turn to you from the anesthesiology perspective, Dr. Bluestein, but I will just say a couple of things to start. I can understand why this would make someone cautious about future nerve blocks. Tongue numbness during or after a block is not something I would dismiss, especially when it's happened more than once after procedures involving local anesthetic. And if the local anesthetic is entering the bloodstream and causing some systemic toxicity — that would be very concerning. There's numbness, and sometimes even dizziness and other neurologic things may happen. There's a lot to be considered here.

[52:39] Dr. Linda Bluestein: Yeah. And I want to add to that. Yes, exactly what you just said. So, LAST — or local anesthetic systemic toxicity — is something that probably occurs a lot more commonly than most of us realize, because if you've received midazolam or some other benzodiazepine, that actually kind of suppresses that response. And so you might actually have more of an effect and not be as aware of it or be able to tell the team as much as if you don't have that premedication.
[53:08] Some of the things to be aware of that can occur with LAST: tongue or perioral numbness, exactly as she describes; metallic taste; tinnitus or ringing in the ears; dizziness; agitation; slurred speech; seizures; or cardiac symptoms. And then it can progress to life-threatening symptoms if the blood level is high enough. But I imagine that like most things, it's on a spectrum, and there are probably a lot of people who experience some mild symptoms related to this that we never pick up on because we're not looking for it. If we're not looking, we're not going to find it.
[53:39] I had a similar reaction a number of years ago. I was working in the OR and somebody said, "Oh, I can inject your knee," and they were basically doing it between cases. I didn't calculate my own dose of local anesthetic properly. I gave them a syringe, they injected it into my knee, and I immediately — I was in the PACU — I said, "Oh my gosh, I need to lay on the floor." And I laid on the floor. Afterwards everyone was telling me it was a vasovagal reaction. And I said, I have had vasovagal reactions before, and this was very, very different. This was definitely not that. I feel very confident that in my case it was LAST.
So a couple of important points here. One, size matters a lot — I should have calculated my dose more carefully. I went with kind of an average dose for an adult male, and at that time my weight was substantially lower than that. So I should not have given them that large a syringe. And also, the condition of the tissues makes a difference. I had a lot of inflammation in my knee, and so the local anesthetic uptake is going to be a lot faster. There are a lot of factors that can contribute to that.

[54:49] Dacre Knight: Increased permeability going on and things like that, right?

[54:51] Dr. Linda Bluestein: Exactly. So the whole thing with the oxycodone is kind of interesting. Maybe there was some histamine release related to the oxycodone. Maybe it contributed to dry mouth or something, and maybe that's why it seemed to be related. Or it's possible that she made that connection, but it was more coincidental than that.
[55:10] But it's really important that people be aware of these things because I feel like blocks are becoming more and more common. They can be hugely beneficial — that's the other thing. I hate to see somebody saying no to blocks when maybe, if they were done with the correct dose and more cautiously — because if the person says, "Look, I had possible early LAST or systemic effects last time," can we think about the total dose? Can we think about adding epinephrine, which will decrease the absorption? Then maybe that's something that should be considered in the future.
[55:47] All these facilities should have something called lipid emulsion that they can use to help reverse the effects. But this is a great question because this is something that has probably occurred to other people and they just don't necessarily know what it was — and they may or may not have brought it to the attention of the team.

[56:06] Dacre Knight: Yeah, I agree. And speaking from personal experience, if you got it mixed up, then who can imagine others might too. And yeah, I agree with you — this doesn't necessarily mean the patient can never receive a block again. But I think it definitely belongs in their anesthesia history, in their medical records, so that it can be attended to if it is something that is recurrent. And it may involve pre-procedure anesthesia consultations in the future — careful dose planning and all the rest.

[56:45] Dr. Linda Bluestein: And the last thing I want to point out about this is that it is not at all uncommon to receive a block before the procedure and then also get some local anesthetic during the procedure, and those can be additive. So it is very possible that maybe she was having a little bit of symptoms, then they induced general anesthesia, and then maybe she got some local anesthetic during the procedure or at the end. We often put in a lot of local at the end, and surgeons will often be very generous with that because they want you to wake up feeling — at least from the standpoint of the incision — fairly comfortable. So those cumulative doses also should be considered and taken into account.

[57:25] Dacre Knight: Yeah, definitely.

[57:26] Dr. Linda Bluestein: Okay. Well, I loved getting to talk with you about these excellent questions, and hopefully we'll have some really great ones for our next conversation. Before we go, is there anything else you wanted to share? Any developments you want to mention?

[57:45] Dacre Knight: Well, I very much enjoyed it too, and I hope it helped some of our listeners. Sometimes these things generate more questions than they answer, and I love that, because there are definitely a lot of very good questions here to address. So I'm definitely looking forward to coming up with more fan mail that we can go through at a future time. Please keep it coming.

[58:10] Dr. Linda Bluestein: Absolutely. Okay. Well, it was great chatting with you, Dr. Knight, and I hope all is well there. And I'm sure I will be seeing you in the very near future in person. I think the EDS Society Global Learning Conference — I'm not sure what the release date is going to be on this episode, but we're recording it before the Global Learning Conference — and I think that's going to be the first time I've met you in person.

[58:34] Dacre Knight: Okay, yeah. Great. Looking forward to that for sure. It's a long time coming.

[58:40] Dr. Linda Bluestein: Which is kind of crazy. Now we do so much virtually that sometimes those things happen. So okay, well, thank you again.

[58:48] Dacre Knight: Yeah, thanks, Dr. Bluestein.

[59:24] Dr. Linda Bluestein: Thank you for listening to this week's episode of the Bendy Bodies Podcast. If you'd like to go deeper, I share additional education, clinical insights, and resources in my newsletter, the Bendy Bulletin, which you can find on Substack at hypermobilitymd. You can also help us spread the word about connective tissue disorders by leaving a review, sharing this episode, or sending it to someone who needs it. These small actions truly make a difference in raising awareness about these conditions that are still widely misunderstood.
[59:52] And don't forget, full video episodes are available every week on YouTube at Bendy Bodies Podcast. As many of you know, my passion is helping people better understand and navigate these conditions. In addition to my clinical and educational work, I offer one-on-one coaching, professional mentorship for healthcare professionals, and expert witness services. If you'd like to learn more, please visit the services page at hypermobilitymd.com.
[1:00:18] You can find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, X, and LinkedIn, all at @HypermobilityMD. As part of our collaboration with the UVA Health EDS and Hypermobility Disorders Center, we also want to share a few helpful resources. For questions or appointment inquiries, you can contact them at [email protected]. That's the letter R, [email protected], or call 434-243-8200.
[1:00:50] Our incredible production team is Human Content. You can find them on TikTok and Instagram at Human Content Pods. We love bringing on guests with unique perspectives to share. However, these unscripted discussions do not necessarily reflect my views or opinions. Furthermore, perspectives expressed within Bendy Bodies media, including this podcast, do not reflect the views or opinions held by Human Content Inc.
[1:01:13] Although we may share healthcare perspectives on this podcast, no statements made on Bendy Bodies should be considered medical advice. Listening to or watching this podcast does not constitute a doctor-patient relationship. Please always consult a qualified healthcare provider regarding your own care. For information about the Bendy Bodies program disclaimer and ethics policy, submission verification and licensing terms, HIPAA release terms, or to get in touch with us, please visit bendybodiespodcast.com.
[1:01:38] Bendy Bodies Podcast is a Human Content production. Thank you for being a part of our community, and we'll catch you next time on the Bendy Bodies Podcast.