Are You Being Gaslit About Hormones and Health? | Office Hours (Ep 164)

Transcripts are auto-generated and may contain errors

Dr. Linda Bluestein: [00:00:00] And this is why some people with MCAS notice flares around ovulation or menstruation when hormone levels shift rapidly. We also know that oftentimes the onset of periods, which is known as menarchy, often will change a person's picture, so that's when they often start developing a lot more symptoms of joint hypermobility and or mast cell activation.

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 Syndrome dedicated to helping you navigate hypermobility and live your best life. Today's solo or office hours episode is gonna be a little bit different.

It's a little less about the science and more about the struggles of living with EDS and HS. [00:01:00] Some of the things we are going to cover include challenges in obtaining a hypermobile EDS diagnosis, some unexpected triggers of mast cell activation, menopause, perimenopause, hormone replacement therapy, and so much more.

As always, this information is for educational purposes only, and it's not a substitute for personalized medical advice. Stick around until the very end so you don't miss any of our special hypermobility hacks. Here we go.

Okay, so before we start today, I have to give a little shout out to Dr. Audrey Kershaw. Um, ever since I interviewed her very recently, I've changed my coffee habits. So if you notice, if you're watching on YouTube right now, you'll see I don't have a lid on my coffee, and so I'm trying to drink it a lot faster.

So I don't bathe my teeth and sugar all morning. So I wanted to just give a quick shout out to Dr. Kershaw, and as with so many of you, I learned things on this show that I immediately incorporate into my everyday [00:02:00] life. So thank you so much for sharing your stories with me and for sharing your struggles because it really helps me so much to create episodes that are going to be as meaningful as possible for you.

Today we're gonna talk about some listener stories. So this first one is a listener who reached out with a frustrating story about trying to get a Hypermobile EDS diagnosis. And so this is Kaylee's story about chasing the diagnosis. Kaylee is a 38-year-old woman diagnosed years ago with, I'm doing air quotes if you're watching on YouTube, benign joint hypermobility syndrome and fibromyalgia.

Um, she sought reassessment for pain and hypermobility and her rheumatologist office. No longer quotes again, treats hypermobility. I'm sure a lot of you have heard this story. Her PCP would not diagnose Hypermobile EDS despite a seven out of nine bitten score, which we know is only part of the story. And EDS checklist, the sports medicine doctor said, no one here diagnoses EDS.

On her chart, [00:03:00] she said there's notes about hypermobility, possible h EDS, cervical spondylosis, chronic myofascial pain, et cetera. She said that the local geneticists only assess people with vascular EDS and abnormal echocardiograms. She said her echocardiogram is normal. She does mention that she has PVCs or pre ventricular contractions in the heart.

She has easy bruising, but no history of aneurysms. She lives in a small town, can't afford out of network or cash pay care. Um, she has not been able to find any providers nearby on the EDS society website, and she said that a lot of providers claim a diagnosis isn't needed, but she really wants clarity for her own peace of mind.

So. You can probably relate to this person's story. So many people can. I know that this is a really tough spot that a lot of people are in, so let's dive into why getting a Hypermobile EDS diagnosis is so hard and what you can do. We've talked about this many times on the podcast already, but I feel like we almost [00:04:00] can't talk about it enough.

So let's first talk about the need to validate. So wanting a Hypermobile EDS or HSD diagnosis is totally valid. It helps with peace of mind, helps you advocate for yourself, helps you get care that you need, possibly disability and some treatments that might be really, really essential for you.

Unfortunately, there's so much stigma around the Hypermobile EDS and HSD diagnoses. Some doctors dismiss them as quote TikTok diseases due to social media awareness, and they wrongly assume that patients are self diagnosing or exaggerating. We know of course, that these are real conditions and that when people have these problems and they suffer from their connective tissue being weaker than normal, they get these multisystemic symptoms, and this is validated by so much medical research.

We don't have a biomarker yet, which is definitely part of the problem. But there's so much bias and so many providers are very skeptical, and this is also a worldwide problem. So I hear people say all the time, [00:05:00] I wish I lived in the uk, or I wish I lived in Australia, because they think that that's where care is better.

But then I hear people from those exact same locations tell me how terrible the care is there, and they share the same frustrations. So unfortunately there's no single place where care is really great. Um, I do encourage you to listen to the podcast and we'll talk a little bit more later, of course, about some other resources.

But, uh, we're gonna keep talking about this until we've got it all figured out, which hopefully will happen at some point. Um, in terms of terminology, I want to point out that the listeners, benign joint hypermobility syndrome diagnosis is obsolete. So BJHS was removed from the terminology in 2017 per the Ehlers Danlos Society, and at that time was replaced by Hypermobile EDS and HSD.

If your provider is using BJHS, they're using an outdated term, which does contribute to infusion poor care and diagnostic resistance. I do still see this [00:06:00] sometimes on my patient's charts when they've seen other doctors. They'll come in and they still have that, um, diagnosis There. And it's especially worrisome if somebody assessed them recently and put that diagnosis.

That's a little different to me than somebody just carrying over a diagnosis that was made in the past. I do also wanna comment on testing for vascular EDS. Testing for vascular EDS should be based on clinical suspicion, based on symptoms and signs, not an abnormal echocardiogram, especially in younger people.

We should not wait until the disease has progressed. To do an echocardiogram, I'm gonna share a link in the show notes to the EDS red flags. Um, and if you have any of those red flags, you definitely should be encouraging your clinicians to do genetic testing for you. So we definitely want to be looking at the symptoms and the signs and not wait for changes in the heart or in the blood vessels before we do genetic testing.

So why is hypermobile EDS so complex? So we don't have a [00:07:00] biomarker yet. Um, hopefully we're getting closer. There's some incredible work being done at MUSC and other places, and I highly recommend watching the lectures from the Bobby Jones CSF together. We Thrive Summit, especially by Dr. Norris and Dr.

Genser. Um, there's lots of other great presentations on the website and please check out mine as well. We will share the link to that in the show notes. It was a really great conference and they're really doing such fantastic work in their lab and. Discovering. Abnormalities in different proteins in people with hypermobile EDS versus the general population.

And so it may very well turn out that these conditions, or hypermobile EDS specifically, I should say, um, might not be a congenital connective tissue disorder, but might actually be more of an immune condition or, um, an immune dysregulation condition. So currently there's no genetic test that we can use for this.

Um, we can do genetic testing looking for like autoinflammatory conditions, but there's no genetic test yet [00:08:00] for hypermobile EDS. Um, so the diagnosis uses clinical criteria such as the bite and score. Um, we often start with that, but we definitely should always be going beyond that. We should be looking at other joints because the BITTON score is so limited.

And we should be looking at symptoms like, uh, joint pain, joint instability. We should be looking for signs like the pyogenic papules and, uh, the high narrow arched palate. Although somebody shared with me recently that they don't think that should be part of the criteria. And we know that the criteria is evolving as in the road to 2026, so we'll for sure include a link to that in the show notes.

In fact, Shanti or Tessa, can you put a link to that in the show notes to make sure we get that in there? Um, we've talked about this before a little bit too. Okay. So we also have, um, emerging research as I mentioned, that hypermobile EDS might just not be linked to mast cell activation, but also immune dysregulation, and that could explain the multisystemic symptoms as well.

So if you think [00:09:00] about it, these are incredibly complex conditions and. In order to properly diagnose them does require time and training. It would be ideal if primary care providers or PCPs could coordinate care and make the diagnosis, but they often lack the expertise or training needed to properly navigate the hypermobile.

EDS multifaceted, you know, nature of this condition. So. It's important to keep that in mind that PCPs need to be able to do so many different things. They need to be able to treat infections and, you know, look at injuries and things, wound infections, and uh, you know, lesions on the skin and so many, so many different things.

So I did do an episode on curb siders. Which is a podcast for internal medicine doctors, and we will put that link in the show notes as well because, uh, that, that podcast went out to a lot of inter internal medicine doctors and they asked some really, really great questions. So we really need to be working on getting this information into the hands of [00:10:00] internists and family practice doctors.

In terms of practical steps for diagnosis, um, one thing you wanna think about is telehealth. There's definitely a possibility that you could find somebody that is in your insurance umbrella, um, that does do telehealth, but also keep in mind that telehealth rules are changing. Stay tuned for an upcoming Substack post on this.

This is my newsletter, the Bendy Bulletin, and you can subscribe to the substack newsletter@hypermobilitymd.substack.com, and that way you'll be notified whenever I publish a new newsletter. So telehealth is one definite option. There's also a couple of other nonprofit organizations that have registries, so we'll have links to those in the show notes.

Uh, one is through the Dysautonomia project and the other is through Dysautonomia International. But I also want to remind you that these lists are generally including physicians who are interested in caring for this population. I should say physicians, nurse practitioners, physician's assistants. Um, they're not necessarily.

People that are recommended by them or vetted, [00:11:00] um, that would be a huge task. And I don't know if at some 0.1 of these organizations might do that, but currently, um, my understanding is that these lists are not vetted. In terms of self-advocacy, I do recommend that you bring the 2017 Hypermobile EDS diagnostic criteria, uh, with you to the appointments.

You can find that on my website, on the bendy bodies podcast.com website, and, uh, be sure to do, you know, you could calculate your own bite and score ahead of time and let them know, Hey, this is. What I calculated, but also point out other joints that are problematic for you. So you can say, look, I have hypermobility in my elbows, but really my bigger problems are in my ankles or in my feet, or wherever it might be, um, in my hips.

So that way they hopefully will know to focus on those other joints. And you can explain to them that the BITTON score is a tool. It's a very helpful tool, but other joints that are hypermobile or unstable should be absolutely counted as well. I would also recommend that you could mention that benign joint hypermobility syndrome is an outdated [00:12:00] term.

Of course, you wanna do this gently and delicately, um, and that you could even just come right out and say that I know that there's some stigma surrounding these open quote TikTok diseases, but these are real diseases. And share some resources with them so that they can see that these are real conditions and there's a lot of incredible research that's being done in this space.

You also want to consider. The type of specialist that you might want to see. So geneticists and genetic testing is ideal if you have any red flags, as I mentioned earlier, especially if you have a really complicated picture or a complicated family history, uh, some people have great success starting with a genetic counselor who can then order genetic testing and refer to a geneticist if needed.

We're gonna talk more about that after the break, and I'm gonna give you a link where you can find a genetic counselor. Also, I would consider trying a physiatrist, pain management specialist or rheumatologist. You could also request a referral to a larger medical center, and sometimes people's insurance will cover [00:13:00] somebody who is out of network.

If you can prove that there's nobody who specializes in that condition in your area. Definitely join online EDS groups through, um, you know, Facebook, Reddit, uh, all kinds of different places. They have support groups, of course, and look there for provider recommendations. I'm sure most people already know to do that, but that's, um, I think sometimes an underutilized area that people can get recommendations from.

So let's talk about navigating symptoms in the meantime. So while you're pursuing an EDS diagnosis, I would recommend. Trying EDS more specific physical therapy, like things that will help stabilize your joints, things that are more low impact, doing exercises and then waiting a day to see how you feel.

Um, doing things like bracing might be helpful. Myofascial release done in the proper way. Dry needling done properly. We have an episode about that as well that we can link in the show notes. So Kaylee, I would definitely keep advocating you're doing the right things, despite the stigma and the [00:14:00] barriers.

A diagnosis definitely can help you unlock better care and provide validation. If you have faced dismissal or stigma getting a diagnosis for hypermobile EDS or another condition, please let me know. I love hearing your stories. I also want to mention that my men's PMMS approach can definitely be helpful for navigating symptoms that stands for movement, education, nutrition, sleep, psychosocial modalities, medications, and supplements.

We will link the article in the show notes, and this is a holistic model that I basically, you know, came up with this acronym because it can really help to think about all these different. Facets of your care, and if you think about, if I get 10% improvement from this certain modality and if I get 10% improvement from this medication or this supplement, then eventually that can add up to 50% improvement when my pain was so out of control.

I was having so much difficulty. I kept looking for the one thing that would take all my pain [00:15:00] away, but instead, what really made the difference was doing some small things and getting some small improvements in my quality of life, and then being able to be more physically active and then that. Made me able to do more and feel better.

And that just kind of started unraveling that, uh, you know, terrible EDS wall that sometimes we hit. So it can be just a combination of things and one step at a time and looking for those slow incremental improvements. I would also check out, um, a webinar that I did for the nonprofit EDS uk and we will make sure to have that link in the show notes as well.

And in that webinar, I also talk about the men's PMMS approach. Also, as I mentioned earlier, I did this podcast episode for Curb Siders, which actually had over 40,000 listens within the first few weeks. We covered a variety of topics related to hypermobility, and then I also did an episode, a follow-up episode where I addressed their listener questions.

So we'll link both of those in the show notes as well. [00:16:00] Okay, so now let's move on to our next listener question and story. Um, this is from Anne. So Anne shares with us her intense health struggle. So in 2019, she experienced severe symptoms that included chest pressure, jitteriness. Neuropathy, abdominal pain, nausea, diarrhea, heart palpitations, muscle and joint pain, wheezing, coughing.

Sinus issues, shortness of breath, hot flashes. Confusion, dizziness, poor focus, insomnia, restless legs, and worsening tinnitus or ringing in the ears. She figured out that this was triggered after eating. Red dye number 40. Jello and she got wheezing, mucus coughing, chest pressure, throat swelling, high heart rate.

Um, had an ER visit that was treated with Pepcid and EpiPen and Prednisone. She later realized that she was getting a lot of sensitivity to different smells like laundry detergent, perfume soaps, and smoke. Also eating, worsened her symptoms. She started feeling like a flu-like illness, [00:17:00] dizziness, lump in her throat, breathing issues, fight or flight, et cetera.

Um, some of the things that she did for this, she wore masks in public, used an air purifier at work, had her family change clothes before they entered her home, and she at some point saw an allergist that suggested mast cell activation syndrome. She had some normal testing, but her, uh, blood histamine test, she said was very high.

So she ended up deciding that her symptoms might be linked to eating tuna every day for three months, and her blood mercury level was 6.8. She completed a detox program and her symptoms faded over six to eight weeks, and she said that during this whole process, uh, Brigham and Women's was diagnosing her as having panic attacks and was dismissing her symptoms.

But now she figured out that she can manage with a low histamine diet. She avoids tuna, but she's back to actually tolerating red jello. So I thought this was a really interesting question because I'm actually in the process of addressing my [00:18:00] borderline high mercury level with my own doctor. I eat a lot of fish.

I don't eat meat, I do eat fish. Um, I try to be very careful about the fish and I personally don't eat any tuna at all either because of the mercury and I don't eat sword fish or shark or any of those really big fish that have really high mercury levels. So let's talk a little bit about Mercury and you know, could Mercury have caused this and also what are some of the other things that could have contributed to Anne's symptoms?

Of course I'm not diagnosing Anne. I don't know anything more about Anne than what I just told you. And Anne, just so you know, I'm not diagnosing you. I'm just sharing your story and thank you so much for sharing your story with me. So mast cell activation syndrome, as we know, is when mast cells over release chemicals, which include histamine and tryptase and interleukins, and all kinds of other substances that cause allergic like symptoms, many of which Ann describes flushing GI problems, breathing problems, neurologic effects, et cetera.

There is a paper that I will [00:19:00] link in the show notes where Dr. Theo, her, who we've had on the podcast twice, will also link that in the show notes. Um, he is the senior author on this paper and the. Paper talks about mercury at even low doses triggering mast cell degranulation in lab tests and releasing inflammatory mediators.

So, uh, mercury apparently can disrupt barriers including the blood brain barrier and contribute to inflammation and allergies and hypersensitivity. So this is very, very interesting because, you know, Anne brought this up and I was thinking about my mercury level for a while. 'cause it's not crazy high, but it's higher than I want it to be.

So I've been trying to work on that and, uh, so Anne's question is very, very interesting because that also makes me think about, well what about other heavy metals? So other heavy metals like lead or cadmium or arsenic, um, are also linked to mast cell activation and or worsening symptoms in sensitive people.

So her level of 6.8 [00:20:00] is, you know, considered moderate, and my level is a little lower than hers, but it actually went up from the first time that we tested it until the most recent time. So the detoxification that she did definitely might have helped reduce her metal burden. Um, so the science is actually very, very interesting, but we definitely need more human studies to confirm any kind of relationship here.

So I wanna point out another thing, which is, while mercury in something like tuna can definitely cause problems with people who are. Sensitive and have mast cell issues. Um, it could also be that tuna is causing problems through histamine. So tuna has histidine which bacteria turn into histamine, if not refrigerated properly.

Um, histamine as we know, uh, also causes all kinds of problems in the body like flushing, rash, headache, et cetera. And we can see something called scrum boy poisoning and Dr. Tanya Dempsey and I talked about this in an episode a while back, so we'll be sure to link that episode as well. So, [00:21:00] sorry, I'm giving, I'm giving my production team a lot of things to link here in this show, but, uh, we wanna make sure you have lots of other resources to check out.

So Scrum boy poisoning, which I think I have actually had in the past, and I was asking Dr. Dempsey about it on a previous episode. Um, you, when you get scrum boy poisoning from either tuna or uh, other fish, it's when you get flushing, rash, headache, dizziness. Squeezing throat, swelling, palpitations, nausea, and diarrhea, which, um, is very similar to the listener's symptoms.

Now, keep in mind for any of these symptoms that we are describing when we're talking about these different things, you don't have to have all of those symptoms. So in my case, I had the, the diarrhea, the nausea, palpitations. I had a lot of different symptoms. I had a headache, um, but I didn't have all of them.

But I'm very, very confident that I had scrum wide poisoning, um, a number of months ago. As this listener, Ann is talking about daily tuna consumption for three months. Um, that definitely could have caused repeated histamine exposure, could have sensitized her, sy [00:22:00] her system, and that could definitely explain the sensitivity to smells and low histamine diet success.

Because if you have things that are continuing to trigger your immune system, um, if, if you do something like a low histamine diet or you make other changes in your environment, then you're not going to be able to make so much progress 'cause you're still getting these triggers into your immune system.

Um, it's important to note that histamine is not destroyed by cooking or canning. And Scrum Boy can definitely be mistaken for allergies or MCAS, but it is kind of a different type of, uh, reaction. So in order to help. Prevent having reactions to fish, um, related to more the histamine side of things.

Keeping fish very, very cold is really important. So I live in Colorado where it's very sunny and it's also often very, very warm. And so I always take a cooler with me when I go to the store and I actually put my fish in a cooler, even if I'm coming straight home. Well, I probably wouldn't ever buy fish and not come straight home.

[00:23:00] But even if I'm coming straight home and I only have like a 20 minute drive, I still put the fish in a cooler just to be on the safe side. So I love Anne's story. Thank you so much, Anne, for sharing your story. This is really, really interesting and I'm so sorry that you had all of this dismissal by doctors as unfortunately I know so many of you have experienced.

Um, you know, your detective work that you did was really, really critical, and I know so many of you are so great at doing this kind of detective work. Make sure when you're doing your detective work and you start seeing like all these different things that are confirming what you think, like also ask if you're doing like an AI search or something like that.

Keep in mind they're not perfect, but they do provide a lot of useful information. Um, I would also suggest asking what else could it be? What else could it be? Keep asking that so that you make sure that you know, you're not getting too narrow focused, um, too early on. So if you've ever had a weird reaction to Phish or you can relate to this story, please let me know.

I love hearing from you. We're gonna take a quick break and when we come back, we are going to [00:24:00] talk about what to do if you can't access a geneticist perimenopause, menopause, hormone replacement therapy, and more. We'll be right back.

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Whether you're shopping for yourself or someone you love, there's so many options to choose from. A portion of the proceeds goes to support EDS nonprofit organizations. For more information, please visit bendy bodies boutique.com. Thank you so much for listening to Bendy Bodies. We really appreciate your support.

It really helps the podcast when you like, subscribe and comment on YouTube and follow rate and review on all audio platforms. This helps us reach so many more people and spread the information to [00:25:00] everyone. Thank you so much again, and enjoy the rest of the episode.

Okay, we're back. So I wanna talk a little bit about the frustrations that so many of you have with the lack of access to geneticists. In a perfect world, yes, everyone would be seen by a geneticist and get a comprehensive evaluation, and then if there's appropriate testing, they would get that ordered and it would be interpreted by the geneticist and or work with the genetic counselor, and that would be great.

But because of the fact that there's no genetic marker known yet for hypermobile EDS and because of the abundance of inquiries that they get, so many genetics clinics will not even put you on the list or set you up for an appointment if you mention hypermobile EDS when you first make a phone call. So, I understand how this can be extremely frustrating for people in this situation.

Um, so I wanna talk a little bit about genetic counselors because they can be very, very helpful. So if you have some of the red flags, which we're gonna share that link in the [00:26:00] show notes, um, if you have some of the red flags for some of the conditions that do have known genetic markers like vascular EDS, classical EDS, classical like EDS, Marfan syndrome, Louis diet Syndrome, et cetera, then a referral to a genetics counselor, um, definitely could be very, very valuable.

Uh, we'll have that. Link in the show notes so you can see what all of those red flags are. But a couple of them are like aortic enlargement or aneurysms on echocardiogram, unusual vascular fragility, or arterial dissections. A strong family history of aneurysms, a family history of early sudden cardiac death, um, or a family history of known genetic mutations.

So genetic counselors can take a history, they can clarify inheritance patterns and look at your family risk even if you don't know the specific gene, they can help decide who in the family might benefit most from testing or screening. It might be you, it might be another family member. The genetic counselor can help you understand what your risks [00:27:00] are and navigate the healthcare system.

Um, they can order genetic testing in many, many instances, and while they're not able to actually diagnose you with a condition, they can often order the genetic testing and then they can help you with the interpretation. Um, they cannot override insurance restrictions on who qualifies for genetic testing, but they can often go through the insurance process and help you get the genetic testing covered by your insurance.

Um, another thing that they cannot do is help you manage symptoms. Their role is in counseling and also test interpretation, not indirect treatment. So the bottom line is a genetic counselor is, um, definitely very, very useful. Um, they can be super useful if there are signs pointing towards a condition with a known gene, especially, or if you need help understanding your family risk and genetic implications.

The next listener question is from Rebecca and Rebecca asks, I'm in the menopause transition and on the hypermobility spectrum, though not [00:28:00] diagnosed with EDS, my new hormone specialist ordered testing for mast cell activation syndrome and warned that hormone therapy can be problematic. Estradiol and Prometrium have finally made my pain manageable after years of struggling, but now she wants to lower my estrogen levels until results are back.

This feels terrifying. Are there resources or studies on managing menopause with MCAS? Episode 1 35 Touched on it briefly, but I'd love more guidance. First of all, Rebecca, thank you so much for your question. I get asked about this all the time. In fact, just yesterday I was discussing this in great length with a patient.

Um, before I begin, I want to share a couple of resources with you. Um, I've had some excellent guests on the podcast. They've discussed hormones and we'll link those episodes in the show notes, but you are correct, Rebecca, we need to discuss this more. I also want to recommend that you check out Dr. Mary Claire Haver, um, hopefully I'm pronouncing that right.

Um, her Substack is really, really excellent, her Substack newsletter, and she had a recent post [00:29:00] that was titled What Nearly 1000 Women told me about Perimenopause. This is a must read for patients and physicians alike and we will link that in the show notes. Also, I would love to have her on the podcast.

So if you happen to know her, please, uh, drop a hint to her. Uh, and we will try to see if we can get her on the show. I don't think we can really talk about hormones, um, enough because it's such a huge problem that so many people face. In fact, Dr. Haver in her Substack article says, as a recent provider, survey confirmed, 62% of clinicians cite a lack of training as the biggest barrier to menopause care.

This is not an individual failure, it's a systemic one. And she comments that 92% of providers surveyed said More menopause training is urgently needed. Medical education must change. Menopause needs to be a required part of every specialty curriculum, not an elective footnote. Clinical guidelines must be updated and taught.

Research must expand beyond reproduction into the full [00:30:00] systemic effects of hormone decline. I love this. I think this is so important and it's especially important because nowadays I feel like people have a choice of going to a clinic where they pretty much sell hormones. Um, kind of like you can go to a clinic where they sell GLP one agonist drugs, so be very, very careful where you go because some places they might be doing a cursory evaluation, but they are basically prescribing hormones to everyone and other places they're taking a much more thoughtful approach.

Um, and some. Places are really, really resistant to hormone therapy at all, so it can be really, really tricky. I wanna encourage you to listen to this entire segment 'cause there'll be some really important points at the end. Um, before I answer Rebecca's question, I also want to add a little personal note here.

I actually was on hormone replacement therapy with micronized progesterone and an estrogen patch for quite a few years. And at some point along the way, my progesterone, my micronized progesterone was switched to a Mirena [00:31:00] IUD. I was doing really well on all of that, but because I have a very, um, high risk of breast cancer, um, because of an abnormal biopsy that I had a number of years ago, my doctors finally convinced me that I needed to stop the estrogen patch and the progesterone, and instead start a drug called ine, which is also known as Avista.

This is a prescription medication that can be used to prevent and treat osteoporosis in post-menopausal women, and also reduce their risk of invasive breast cancer. It is a selective estrogen receptor modulator and, um, is only used in postmenopausal women. I noticed changes right away when I started taking this medication.

You know, I only waited a few days after going off the estrogen patch before I started this medication, which is what they told me I could do. Um, I immediately noticed that my skin became super, super dry. I felt like my skin aged 10 years overnight. My eyes were more dry and swollen. Um, and if anything, I would say [00:32:00] my MCAS actually got a little bit worse.

That's an end of one, totally anecdotal. Um, I'm overall tolerating the medication, the ine quite well, although I do now have hot flashes that I didn't have before. Um, but I keep telling myself, I'm doing this to reduce my breast cancer risk, so hopefully I've made the right choice. It's really, really hard because we.

I just don't have enough data in this area, but I do wanna talk now about hormone replacement therapy when it comes to, um, two things. The first part we're gonna talk about is when it comes to hormone replacement therapy and mast cells, and then we're gonna talk separately about hormone replacement therapy and connective tissue.

Okay, so the first point is mast cells are hormone sensitive. So mast cells have receptors on their surface for estrogen, progesterone, and other what we call sex hormones. But as Dr. Kelly Casperson calls brain hormones, and we'll link that episode in the show notes as well. Estrogen and particular can activate mast cells and increase mediator release and inflammatory [00:33:00] activity.

It is generally thought that progesterone has a more stabilizing or calming effect on mast cells, and this is why some people with MCAS notice flares around ovulation or menstruation when hormone levels shift rapidly. Um, we also know that oftentimes the onset of periods, which is known as menarchy, often will change a a person's picture.

So that's when they often start developing a lot more symptoms of joint hypermobility and or MAs cell activation. So some of the potential risks of hormone replacement therapy in MCAS, um, if you just look up the data, it suggests that estrogen-based hormone replacement therapy may worsen mast cell reactivity in some people leading to increased flushing, hives, anaphylaxis, or worsening of GI and pain symptoms.

Synthetic progestins, which are found in some hormone replacement therapies and birth control can be poorly tolerated by people with MCAS compared with bioidentical progesterone. If this balance [00:34:00] tilts towards excess estrogen relative to progesterone, which some people call estrogen dominance, mast cell driven symptoms can intensify.

What are the potential benefits of hormone replacement therapy in people with mast cell activation syndrome? For some people, particularly those with very low estrogen or progesterone after menopause, carefully chosen hormone replacement therapy can reduce overall symptom burden. Progesterone supplements can help stabilize mast cells, improve sleep, improve pain in certain patients, low dose or carefully titrated regimens.

Sometimes with transdermal pouches, patches, creams, or compounded medications may be better tolerated. But there's a lot of nuance here. There's a lot of individual variability. Some MCAS patients flare with hormone replacement therapy, whereas others find it helps balance their symptoms. The formulation matters a lot.

Bioidentical progesterone is better tolerated than synthetic progestins. And transdermal estrogen may provoke fewer mast cell responses than oral forms. The decision should always be [00:35:00] made with a knowledgeable clinician, ideally, one. Familiar with both MCAS and hormone management. So in terms of takeaways, hormone replacement therapy is not universally good or bad for MCAS.

It's highly individual, and as I mentioned with my own case, we also need to keep into consideration. What a person's risk are of other conditions. And for example, if you have things like blood clots in your history, um, you know, cancers and other, other conditions, then that's also going to tilt the decision one way or the other.

So for MCAS patients, considering HRT, you wanna consider a low and slow approach with close medical supervision. We will also include in the show notes some recent literature. There's a 2025 allergy review that suggests that estrogens enhance mast cell activity and allergic responses. There's a 2023 systemic review that suggests that progesterone tends to inhibit mast cell degranulation.

There is such a thing as hormone linked anaphylaxis, so some people do [00:36:00] experience anaphylaxis in the per menstrual period, so we will share a paper about that as well. Okay, so your practical takeaways for mast cell activation syndrome and hormone replacement therapy. Number one, no one size fits all.

There are definitely some very, very interesting studies looking at this, but individual decision making is critical. Also, you wanna start low, go slow and monitor closely. You want to consider progesterone in its various different forms. If estrogen is used, you want to consider how it affects you and evaluate whether or not it is making your mast cells more reactive or not carefully correlate your symptoms with different stages of your cycle if you're still having cycles, so you can tell if you have any hormone linked flares.

Okay, so next I want to talk about the effect of estrogen on connective tissue because estrogen has a significant impact on connective tissue. Estrogen helps regulate collagen synthesis, cross-linking and breakdown. Higher estrogen levels generally support collagen stability and [00:37:00] elasticity while lower levels.

For example, when you go through menopause, can be linked to reduced collagen and tissue thinning. This is one reason why skin becomes thinner and joints can feel less stable after menopause. Estrogen can also influence ligament and tendon laxity, so estrogen can increase. Ligament and tendon laxity by reducing collagen density and stiffness.

This effect can be especially noticeable in women with menstrual cycle fluctuations where joint instability or injury risk might be higher at times of elevated estrogen, such as in the middle of the cycle. In people with underlying connective tissue disorders like Hypermobile EDS or HSD, this hormonal influence can worsen hypermobility symptoms.

We also know that estrogen can influence wound healing and inflammation. Estrogen has anti-inflammatory properties and can promote blood vessel formation and tissue repair. Women with higher estrogen levels may heal wounds more effectively, whereas lower estrogen states are linked to delayed healing and increased scarring.

[00:38:00] Estrogen also helps maintain bone density and cartilage integrity by influencing collagen and proteoglycan balance. Loss of estrogen can accelerate collagen degradation and contribute to osteoporosis. Fascia and other soft tissues can also respond to estrogen, which influences hydration and elasticity.

So the clinical relevance for people with hypermobile EDS and HSD, many people with hypermobile EDS and HSD notice that symptoms worsen around hormonal transitions such as puberty, menstrual cycles, pregnancy, postpartum, and menopause. Fluctuating estrogen may contribute to these changes in joint stability, pain, fatigue, and injury risk.

Some patients report improvement in tissue stability with hormone replacement therapy, but this is highly individualized. Okay, so what are some key takeaways when it comes to menopause hormone replacement therapy, MCAS, and connective tissue disorders, number one. Estrogen plays a key role in connective tissue health.

Estrogen supports collagen production, [00:39:00] tissue hydration, and bone density, lower estrogen levels after menopause, can worsen joint pain, tissue fragility, and delayed healing, especially in people with connective tissue disorders. Number two, hormone fluctuations can influence mast cells. Sometimes it's more the change in hormone levels than the absolute level.

So estrogen and progesterone can both affect mast cell activity. And some people with MCAS notice flares of allergic type or inflammatory symptoms around their menstrual cycles during pregnancy or after menopause. Number three, menopause may amplify existing challenges. People with connective tissue disorders may experience increased joint instability, fatigue and pain as estrogen declines.

Those with MCAS may also see a shift in symptom patterns as hormones change. Number four, hormone replacement therapy might help, but it's definitely not one size fits all. We have to consider the contraindications, the relative contraindications, our connective tissue support, bone health, and quality of life.[00:40:00] 

Hormone replacement therapy can affect mast cell reactivity, and responses will vary widely. Careful monitoring and individualized decision making with a knowledgeable clinician is really, really essential. And number five, a team-based integrative approach works best. Consider consultation with specialists in gynecology and menopause immunology and allergy for MCAS and connective tissue disorders.

Be very careful not to go to a clinic where you're just going to basically be purchasing hormones because they. Prescribe hormones to everyone. You wanna track your symptoms in relation to hormonal changes that will help you guide your personalized care. Anecdotally, I find that people going through perimenopause tend to have a lot more problems than people once they've gone through menopause.

It does seem like that perimenopausal time where hormones are shifting quite rapidly is really, really challenging for a lot of people. Myself included. For myself, once I went through menopause and now I'm in this, you know, post-menopausal state for quite a few years, things are at a very [00:41:00] steady state and I think that it's a lot more manageable.

Perimenopause can last for quite an extended period of time, so definitely if you feel like you might be in perimenopause, there's a very good chance that you're right. I don't think it's too soon ever to start talking to a gynecologist or other hormone specialist and really start getting some information and figuring out how you might be able to improve your symptoms and improve your quality of life.

Menopause can bring some really unique challenges for people with hypermobile EDS and HSD and MCAS, and if we can understand more about the role of estrogen and consider options like hormone replacement therapy while carefully weighing the risks, we can improve joint stability, reduce flares, and potentially help support our long-term health.

Okay, so now onto our hypermobility hack. You might have seen a recent post that I did where I was doing Zumba on an exercise ball. So as you may know, I grew up. Loving, loving to dance, and I really, really wanted to be a professional [00:42:00] dancer. And for many, many years of my life, I didn't dance at all. I was so busy working, raising children, et cetera.

And then I discovered Zumba and I fell in love immediately. It's so much fun if you've never tried it. It's super fun, but it can be challenging on your body for sure. So I did Zumba for a while, and then I started having problems with my feet, and of course I always had to modify the choreography. So one part of the hack is to always be aware of your body, and especially if you're doing a group class, just be paying attention because you don't always feel the effects of the exercise while you're doing it.

There's something called exercise induced hyperalgesia. So if you think while you're exercising that you don't feel the effects on your body, you don't because you're releasing these wonderful neurotransmitters. So one time I did overdo it in a class and I actually had a setback for several months. So while my love affair with Zumba was intense and I just loved it so, so much, I also quickly figured out that I really had to, um, always be aware of [00:43:00] what I was doing and make sure that I was modifying well.

I started to get problems with my, with my feet, one foot in particular, and. Became less and less able to do Zumba. But then I figured out, well, what if I try taking Zumba classes while sitting on an exercise ball for at least part of the class Anyway, so that's what I did. Um, I was at the YMCA, we had this amazing instructor there named Jessica, a shout out to Jessica, who was this amazing, and my other lovely friend, Tanni.

Um, we had just the best time doing Zoomba together anyway, so, uh. They had exercise balls in the room, in the Zumba, uh, studio, you know, the dance studio. So I would just grab an exercise ball and I would just bounce on the ball, um, you know, during the class and be able to do a lot of the other movements.

So I got to enjoy the comradery, the music. Um, of course all of my dance moves looked completely different. While I was doing it on the ball. Um, but it was just super fun and it worked out really well. And ultimately I had surgery on [00:44:00] my foot and it got a lot better. Um, but that was a really great modification that really benefited me so much.

Somebody pointed out in the comments when I shared this video that they had spine surgery, so that wouldn't work for them. Of course, everyone needs to listen to their own body and do what works best for their body. I have had spine surgery for Charlo cyst, as you may know from discussing, uh, this episode with Dr.

Frank Feigenbaum, who is my neurosurgeon. Um, for me, bouncing on that ball was fine, even though I have, I've had my sacrum cut open. Um, but anyway, that was quite a few years ago, so I've had a lot of healing since then, of course. But anyway, so that's my hack for today. Modify, modify, modify, but find some kind of exercise that makes you feel good.

And if you possibly can do a class, just keep in mind that while you're doing the class, you might have these hormones going through your body that are going to make it, that you can't feel how much you might be overdoing it. So just hold back a little bit, see how you feel the next day, and then that will help guide you in the [00:45:00] future.

Classes can be great for socialization and, um, interaction and, and things like that. Okay, so that's your hack for today. Thank you so very much for listening to this week's episode of the Bendy Bodies. With the Hypermobility MD Podcast, you can help us spread the word about joint hypermobility and connective tissue disorders by leaving a review and sharing the podcast.

This really helps raise awareness about these complex conditions. I have lots of other resources, including my newsletter, the Bendy Bulletin. You can check me out on substack at hypermobilitymd.substack.com. Did you know that I also offer one-on-one support for clients and healthcare professionals in addition to my medical practice?

Whether you're living with hypermobility or caring for people who are, I've got your back. Check out my coaching and mentorship options on the servicesPage@hypermobilitymd.com. You can also find me Dr. Linda Bluestein on Instagram, Facebook, TikTok, Twitter or link. Dan at Hypermobility md you can find human content, my producing team at Human Content Pods on TikTok and Instagram.[00:46:00] 

You can also find full video episodes up every week on YouTube at Bendy Bodies Podcast. As you know, we love bringing on guests with unique perspectives to share. However, these unscripted discussions do not reflect the views or opinions held by me or the bendy bodies team. Although we may share healthcare perspectives on the podcast, no statements shared on bendy bodies should be considered medical advice.

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