Pelvic Pain in EDS: What Doctors Miss and Why It Matters with Dr Rachel Rubin (Ep 183)

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Rachel Rubin, MD: [00:00:00] Unfortunately, when I was trained, everyone got thrown into the crazy bucket like I was taught. If you have allergies, if you have pelvic pain, if you have bladder symptoms, you just get called like crazy patient and like you don't have a good toolbox to help them. And this is where everyone got the diagnosis of interstitial cystitis.

And the problem is when that's the way you treat things, you don't figure out answers very well.

Dr. Linda Bluestein: Welcome back Every bendy body to the bendy bodies. Podcast. I'm your host, Dr. Linda Bluestein, the Hypermobility md, a male clinic trained expert in Ehlers-Danlos Syndrome dedicated to helping you live your best life. I'm so excited today to be speaking with my friend Dr. Rachel Rubin. As so many of you know, pelvic floor and hormone problems are extremely common with connective tissue disorders, mast cell activation [00:01:00] syndrome, and dysautonomia.

In fact, I've interviewed Dr. Irwin Goldstein, Dr. Andrew Goldstein, and also Dr. Kelly Casper, about these very similar concepts and topics. Regarding sexual medicine and other problems that are so common in this population, and I think you might have heard that I actually saw Dr. Irwin Goldstein as a patient for some very, very highly specific problems.

Many, many years ago. Dr. Rubin completed Dr. Irwin Goldstein's fellowship program and is one of the sexual medicine doctors in the United States that is truly changing lives. She's a board certified urologist and nationally recognized leader in sexual medicine. She's the founder of a patient-centered sexual health practice in Washington, DC and Los Angeles.

She's an assistant clinical professor at Georgetown University and a director at large for the International Society for the Study of women's sexual health, otherwise known as ish. She helped shape the 2025 A UA guidelines for genital urinary syndrome of menopause and LED national efforts to remove the FDA's boxed warning on menopausal hormone therapy.

[00:02:00] She is also the founder of SMART the Sexual Medicine Research Team, which is pioneering new research and developing the next generation of clinical researchers. Dr. Rubin is known for her evidence-based practical approach to sexual health and her commitment to educating clinicians across disciplines.

We're thrilled to have her with us today, and I'm so excited because this topic is so, so important. As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Stick around until the very end, so don't miss any of our special hypermobility hacks.

Here we go.

Okay. Well, I am so excited to be here with Dr. Rachel Rubin. We have been trying to do this for such a long time, and I'm so happy to see you today. 

Rachel Rubin, MD: I am thrilled. I actually have been dreaming about this moment and I'm like, what am I possibly gonna say? Because I just wanna spend the whole time with Dr.

Bluestein teaching me what she knows, because I already know what I know. So that's not interesting to me. 

Dr. Linda Bluestein: Well, that's hilarious because the first thing I have to say is I just finished [00:03:00] listening to your Unpaused episode with Dr. Mary Claire Haber. That was such a fantastic episode. I'm gonna link that in the show notes and I want everyone to go listen to that episode.

And I'm actually really glad we had this scheduled for, I think November and we had to reschedule. So I'm really glad that we rescheduled because I could listen to that episode and I literally just finished listening to it. And in that conversation you mentioned connective tissue disorders. I did, yes.

Yes, you mentioned connective tissue disorders and mast cell problems, and you told her you really should talk about that on the podcast. And I was like, perfect. I'm gonna see her this morning. If you would be willing to introduce us, I would love to have her on bendy bodies. And I would love to be on her show because, uh, it's so, 

Rachel Rubin, MD: oh, I'm 10, I'm 10 steps ahead of you.

You should, you absolutely should be on her show and I will connect you. 'cause smart people talking to smart people changes the whole world. 

Dr. Linda Bluestein: I took pages of notes when I was listening to that episode because you had so many great, like quotable things in there. So that's why I'm mentioning it right away because for some of the foundational things with hormones [00:04:00] and uh, genital urinary syndrome of menopause and things like that, people definitely need to go listen to that episode and, uh, just learn from you because you have so much knowledge.

And so this is an exciting, I feel, almost like a part two conversation, even though they're different podcasts. 

Rachel Rubin, MD: You know what I find, and I'm sure you find this too, and I I refer your podcast every single day to patients of this idea of when patients understand their bodies to the level that anyone understands bodies in 2026, then they become these fierce advocates for themselves, and they're able to tinker in this toolbox to kind of figure out.

They need to do. So the patient I literally just got out of the room with is starting to realize that, huh, I'm only 35 and I have all these pain syndromes and all these things going on with my body and all these sort of reactions. And as she's now exploring sort of dysautonomia, mass. Cells and connective tissue disorders and sort of the big Venn diagrams.

And I don't know everything about these [00:05:00] conditions and I don't think anybody knows everything about these conditions. And so it's really be like having her as a partner in this journey as we start to figure out who goes on her pit crew is, is really, um. An overwhelming but actually helpful thing in your podcast, and these different resources are so helpful because you're really starting to watch science, science in real time, which is so fascinating.

Dr. Linda Bluestein: Yeah, and I love that you are such a huge advocate of people making that mind shift change from. I, oh my gosh, I have all these things going on. Nobody knows what's going on with me. And you know, you can, like I was a number of years ago, like I had so much self pity. I was like, I'm never gonna get better.

I was, my mood was bad and I thought, this is it. Like, you know, you talk about quality of life a lot on, on paused, and it's like, you know, yeah, I don't wanna live like this, you know? But then you talk about people becoming a fierce advocate. I love that because it's such a huge mind shift change. 

Rachel Rubin, MD: And, and I tell my patients when they [00:06:00] first come to see me.

So, um, again, I'm a urologist, but I do sexual medicine. And so people come to see me and they spend, we spend hours getting to know each other. I ask all sorts of questions. I get into the weeds about all sorts of things you wouldn't think a sexual medicine doctor would get into the weeds on. And what I tell my patients is like, I am, while I hate this is happening to you, I'm also grateful that your brain can handle it and understands it and is smart enough to be able to find somebody like me.

And I'm gonna turn you into an. Advocate. So it's not just gonna be a patient, but you're gonna take this, we're gonna figure out how to build resilience and what works for you and what you need in your pit crew, but then you're not gonna stop there. You're gonna help other people. And so what we're seeing is this massive amounts of advocacy happening, of patient advocacy happening, which I'm obsessed with.

But this idea of, you know, sort of patients banding together and not just sitting around, woe is us, but actually changing the world, investing in research, asking for research. Getting mark, uh, media [00:07:00] coverage, um, being able to connect to, you know, institutions. Um, it's really, and finding community around advocacy is so empowering because taking action is part of the healing.

Dr. Linda Bluestein: Yes. Taking action as part of the healing. I love that. Um, so you're a urologist as you mentioned, and I don't know if you, did, you know that my husband's a urologist. 

Rachel Rubin, MD: Where in Colorado? 

Dr. Linda Bluestein: He, he's retired. He's retired now. 

Rachel Rubin, MD: How? I did not know that. That's 

Dr. Linda Bluestein: amazing. Yeah. Yeah. Isn't that funny? Um, I didn't know if I had ever shared that with you or not.

So, so you're a urologist and you also are an expert in pelvic pain hormones, sexual health. All these incredible things for people listening right now that have EDS Hyper Mobil, joint hypermobility pots, mcas, et cetera, why is it so important for us to talk about. These things that you have expertise in?

Rachel Rubin, MD: Yeah, and it's funny because there, I know, so I know so much about this, that that sub subject, and yet so many of my patients have pots, [00:08:00] EDS, uh, mast cell connective tissue disorders where I feel like I, the more I learn, the more I'm like, I don't know anything and I feel like I am, you know, just. Get dumber every single day.

Um, truly, I, I think the smarter I get, the more I feel completely incapable. Um, you know, I found myself operating on, um, genitals the other day of, you know, people who have a mast cell condition called neuro proliferative vestibular denia. Where the opening of their vulva is so painful, they can't wear tampons, they can't have sex, they can't, they, all the topical things we give them do not work, uh, in a very small subset of people.

And, and for some, we, we go to surgery and as I'm removing this tissue and I'm doing surgery, which I've done many, many times before, for many, many years, I sit there thinking, holy God. I learned more about this body part in the last 12 months than I knew, you know, for the last 10 years. And I'm thinking to myself, like, I keep learning new things about this very small piece of tissue, like how I, [00:09:00] I'm not, I, I came home and I said to my husband, I said, I'm not smart enough to do this anymore.

I can't keep doing this. I don't know what I'm doing. And he's like, I think that means you're on the right track, right? Like I think, I think that means that you care enough to keep learning more and like you're trying your best. And I think. Again for people with these conditions. The way that I think about it and is, is really like this idea of like, this is bloodletting and leeches.

Like back in the 18 hundreds, all the rich people had was bloodletting and leeches. They didn't have access to MRI machines or monoclonal antibodies or anything like that. And at some point the world changed and we started getting access to new technologies, new science, and the challenge in that moment of what we knew versus what was up and coming.

There was probably a lot of stress on medicine at the time, and I think of that so much because we are at this moment where we're starting. It's like we're opening our eyes. To things that have always been there, but we never saw before. And now we're asking questions and we're starting to show [00:10:00] curiosity.

And not everybody's asking questions and not everybody's showing curiosity. And it is like you are, we're chasing something that we know is better ahead, but we haven't fully gotten there yet. And so it's the messy middle in a way of like knowing that there is hope ahead, but also the frustrations of our toolbox is not quite there yet.

I mean, how do you feel about it? 

Dr. Linda Bluestein: I totally agree. And when you said that about that you feel less smart every, every day. Oh my gosh. That like. Perfectly describes how I feel. 'cause you know, you just, you, you learn more and more and more different things and you're like, oh my gosh, like, I feel like I know this much and I should know this much.

Like, you know, it just, it just feels like there's just so much out there that we didn't learn in medical school, we didn't learn in residency, fellowship, et cetera. Um, I trained as an anesthesiologist, so, you know, understandably I didn't learn about, but like in medical school, what did we learn about Aler Danlos?

Like one sentence, right? We just did not learn about these things. And, um, I actually have seen your, uh, [00:11:00] mentor and who you did fellowship with. I've seen Dr. Goldstein as a patient, um, quite a number of years ago and he helped me tremendously. Um, and I know you did a fellowship with him and it's so wonderful because there are so few people in this country who specialize in sexual medicine.

And you explained so well on, on Paused how sexual. Medicine is medicine and how important that part of our life, you know, can be to us. And so I think that's an important thing maybe for, for you to explain to the audience if you don't mind. Because I, I literally have had comments on social media before when I, I've had Dr.

Goldstein, Dr. Irwin Goldstein, I had Dr. Andrew Goldstein and I've had Dr. Kelly Casperson all on the podcast and I've gotten some comments like, why are you talking about this? Because sex is like a. You know, an extra thing, an afterthought. It's not that important to quality of life. People are in pain. Why do, why is this important?

Rachel Rubin, MD: Yeah. And I think that's such a good point. And I think, um, the, you know, I, as a, as a quality of life [00:12:00] doctor, as a sexual medicine doctor, my job is to meet you where you are and give you what you need. And I think there are people who sex is part of their identity, um, where even in the most pain that they've ever had, their orgasm is quite comforting to them, or.

They, they don't need a partner to have a great sex life, or they need multiple partners to have a great sex life, or sex is the last thing on their mind. And they just wanna be able to sit without pain. And so my job as a sex doctor is to meet you where you are and give you what you need and try to help get the biology to make sense as we figure out kind of where in our toolbox we go next.

And so, um. You know, this idea of pleasure, joy, sexual health, uh, intimacy, connection, support, um, it matters and it matters in longevity. It matters in, in how we treat ourselves, how we feel about ourselves. And sometimes it, it in what's so fascinating. I love my job so much. It's, it's insane. But what's so fascinating [00:13:00] is that.

The, you can't predict what it means to the person like you, unless you ask the question. You don't know what that person needs and what they want and, and how they experience it. And so you have to be curious. You have to ask questions. You have to sort of non, you know, what does sex look like for you?

What do you want it to look like? Like what's ideal? What's holding you back? Um, what matters to you. And I, I think. Doctors don't routinely ask those questions. I've never been asked the questions. I've never, you know, and, and everyone knows what I do for a living, 'cause I never stop talking about it. But to, but the reality is, is like people don't often think that they can talk about it or think about it.

And if you're gonna have surgery on your pelvis or on your spine, or, um, you're gonna start a medication for acne, uh, that could have severe consequences to your androgen levels. Well, that all could affect not just your connective tissue and your muscle. Musculoskeletal health, but all of that could affect your sexual health.

And so pioneers like Dr. Goldstein, the Dr. Goldsteins and, [00:14:00] and the people who have sort of pioneered some of this space to be able to say like, we're not telling you not to do surgery, but we need to look at the sexual health outcomes. And right now we're sort of at the level of bloodletting and leeches where we're barely scratching the surface, looking at it in quote unquote, uh, regular people.

Forget about people with connective tissue disorders, mast cell, the, the others, right. The outliers, uh, which probably aren't such big outliers there. Right, right. They're everywhere. Right. Um, 

Dr. Linda Bluestein: yes, they are. 

Rachel Rubin, MD: They're everywhere. Everywhere. And, you know, it's this, it's so fa I just, that patient I was just with right.

A second ago, I said, you know, it's like we're all waking up from a nap and we're realizing that this is, you know, that we we're seeing things we never looked for before. And she asked about pelvic, her pt asked her about pelvic congestion syndrome and I said, there's a perfect. Example of of I, you know, when I started this, this, this work, everybody had pelvic congestion syndrome and it was an ed Lyme disease.

That was always the diagnosis, [00:15:00] and then it went to an era of nobody had either of those things and now it's becoming, well, you know. Uh, mast cells may explain some of it, and, and, and connective tissue may explain some of it, and Lyme disease may explain some of it, and some people might have pelvic congestion.

And it's sort of like with what lens we look at things through, we start getting better at, better at putting people into smaller buckets. But it's, it's been, it's been a journey. 

Dr. Linda Bluestein: I love what you said about hormones on, on, uh, unpaused because I think so often people think, well, they're not, they're not that important, or they think they're important only for very certain specific things.

So can you talk a little bit about why this population might. Really want to consider, you know, not just estrogen, progesterone, um, how it affects, of course, we could talk about this for hours, right? How it affects you at different stages of your, of your life. But testosterone being such a, such a huge thing for women to be thinking about.

Rachel Rubin, MD: It's so wild how something so fundamentally important to the human [00:16:00] cell and reproductive. Future of humanity is completely ignored in medical school and not discussed. Like sometimes I wake up in the morning and I'm like, how is this real life? Right? Like, how, how is this? This is half the population and no one's talking about it.

The reality is hormones are not good or bad, right or wrong. You know, evil or perfect. They are a fact. They are a thing that exists in your body and fluctuates with time, right? Babies don't have significant sex hormones in their body. Puberty is this transition point where you get this big fluctuation, which is why puberty can be a crazy time for people with connective tissue disorders.

And, and, uh, so you have this big fluctuation of hormones. Then there's this reproductive phase where hormones are fluctuating and some people do great and some people have times of the month where they don't do great and it matters, right? The, the details matter here and, and the world has kind of ignored those details.

And then perimenopause, which is not a short period of [00:17:00] time. Probably all of your late thirties, all of your forties, where you also don't feel like yourself. And you go through this wildly fluctuating time period with a drop in androgens with a fluctuation of estrogens and progesterone, a change in ovulation, and then you come to an abrupt halt and a castration event where the whole system turns off on average age 52.

And everyone experiences this differently a little bit. And so by, by ignoring it and closing our eyes and just saying, we don't wanna know about this, it doesn't actually, it's not the right approach. Um, but the reality is, is all of that can affect your connective tissue. All of that can affect your inflammation.

All of that is we, we know, affects your brain and your heart and your muscles and your connective tissue, and all of your organs. And so. Again, and then the, the other, again, just to make it another level of complex is not all hormones are the same thing, right? It would be [00:18:00] so easy to just say, oh, hormones, I can't take those.

They're good or bad. I didn't do well with with birth control, so I can't take hormones. Well, unfortunately that's not true because estrogen is different than progesterone, which is different than testosterone. When you take it, a synthetic version through the mouth is different than if you take a natural version through a patch in your skin and the, and if you microdose it into the vagina, that's safe for everybody and prevents urinary tract infections and pelvic pain in an astronomical number of people.

And when your doctors don't know this, why should you know this? Right? That's the challenge. Which is why I am on all those podcasts and I do help write guidelines and I do go on Instagram, not because I wanna like be the face of anything or wanna be popular. I don't, I'm actually quite an introvert, but it is like women are dying out there.

They're dying. They're in pain. They can't live the quality of life that they want to, and they are dying of urinary tract infections because they're [00:19:00] not getting good advice from medical professionals. Just like you're not getting good advice on your bendy bodies, which is why you're listening, right? You have to find the people who are, are, are, are up to date on this information.

Dr. Linda Bluestein: And it's so challenging because I feel like I, I have friends who will go to a clinic where I feel like the clinic is truly selling hormones. They, they have pellets or whatever else that they do, and they're gonna sell you hormones. They don't actually fully evaluate you. Like you're talking about the detail level of evaluation that you will do in your clinic.

So how do people find someone who is going to actually give them the proper evaluation that they need in order to write the proper prescriptions? 

Rachel Rubin, MD: This is another thing that keeps me up all night, is, is. You know, a lot of medicine has been around a long time and can start to become algorithms and sort of quick things.

This is the way modern medicine is, which doesn't work for wi 50% of the population, which is [00:20:00] women. But this idea of like if you have a kidney stone, you know, there's you, you know, there's an algorithm of like, here's what you need to do. You either. Don't go to surgery or go to surgery and you can sometimes train, you know, people at different levels of education to help with these algorithms.

Right. And so there's not much brain power sometimes that goes into certain, you know, treatments, if you will. I think when it comes to for sure, connective tissue disorders and, and hormone therapy and the nuances of the safety and the efficacy of hormone therapy, we're not quite at that algorithm level yet, right?

We're still in the customized bespoke, uh, precision. Thing of like, well, Linda, let's talk about your story specifically and what is it that your body needs? And given that you have a bendy body, you know, you may be more sensitive with this, that, or the other. And, and maybe we have to tailor this to you.

And the more education I give you, the more you're able to help me tailor this information to you, which you're not gonna get that if you go to appellate clinic where [00:21:00] they took a weekend course and they don't know about bendy bodies and you know the difference in the different things. So, so. So we're trying as fast as we can to train people to use their brains and be able to do things thoughtfully.

But you could have the smartest doctor in the world, and if they only have 10 minutes to see you, you are not gonna get a great visit. You're not gonna get a great tailored situation. Or if you see someone who took a weekend course and they spend three hours with you. You still might not get the right thing, right, because they're well in, meaning they're well intentioned, but their brains and their experience may not work to the level that you need them.

So this is part of why I created a course to teach clinicians like a, almost like a basic course to teach clinicians how to start writing prescriptions and the whole. Premise is no one taught you how to do this in school, and I get it and I'm gonna start mentoring you. And it doesn't mean I know everything or that I am doing it the right way, but here's how I think about it.

Here's how I approach it. Here's why. What I'm afraid of, here's [00:22:00] the data that we have and we've had, you know, a lot of people sign up for it and it's been, again, it's a start. It's not the whole thing, it's a start, but it's a problem for the patient who becomes empowered. They're listening to all these podcasts, they're reading the books, and they're looking for their.

Doctor to, to sort of save the day. And I would say there are a couple resources of really great places to look. Um, ISW is my favorite, uh, I-S-S-W-S-H, uh, the International Society for the Study of Women's Sexual Health. These are people who have invested in. Hanging out with a group of people who deeply care about quality of life and sexual health.

And so there's, we, we brought Dr. Bluestein in to give a, to teach us about, um, uh, uh, you know, all the things she knows and, and we're so curious about making sexual health and quality of life as good as possible for people. So we invest a lot in, uh, hormone management. We invest a lot in sexual health.

That doesn't mean everybody who's on the website is the smartest person you've ever met, right? But it's a really [00:23:00] good start, kind of a thing. 

Dr. Linda Bluestein: I was so honored that you invited me to speak last year at ishish and it was such a fun conference. I heard you and Mary Claire talking about how fun the conference is.

It was different from the minute I walked in the door. I've been to a lot of anesthesia conferences. I've been to some EDS conferences and, you know, variety of different, uh, different medical conferences. But yeah, it was different. It was, it was, it was great. It vibe. It was really fun. 

Rachel Rubin, MD: D vibe. It's a fun vibe.

Dr. Linda Bluestein: It was a super fun vibe and you're so right about time and with people with connective tissue disorders and mast cell problems and dysautonomia, they often have so many different symptoms and they have problems in every system of their body. So they go in if, if they have a 10 minute. Visit, the person just, uh, throws their hands up and they have no idea what to do.

So I'm glad you brought up about the time factor, and I know that you've also talked about the insurance problem because insurance, rewards, procedures, surgeries, things like that, they don't care about the amount of time that you spend with a patient. 

Rachel Rubin, MD: Which doesn't work for 50% of the population like, like even my healthiest [00:24:00] patient, like I actually had a patient come in the other day who was 16 or 18, like pretty young, and she actually came in 'cause her mother was a patient and she had no medical problems and the mom just wanted her to like.

Talk to me like the mom was just like, I just want her to learn about her body. I want her to learn about sexual health. Like I want you to have a conversation. And I spent two hours with this woman talking about her medical history, her her history, asking her questions, educating her on her anatomy and her body and sort of hormones and how they worked and.

I was not fulfilled in that too. I wasn't sitting around being like, oh, I wish I had less time. Like I actually wish that I had more time. And so that's for a healthy no medical problem. So everyone, and she's only lived for 16 years for goodness sake. So I actually, to the point of what we were just talking about, when I have a lot of patients with connective tissue disorders.

Uh, present exactly like what you just said, where even when I give them time, I'm still overwhelmed at where to start because I am not an expert in [00:25:00] dysautonomia and mast cells, and I wanna help so badly, and I am so empathetic to the situation, and yet I still can't fix it, quote unquote. Right? Like, I don't have the skillset to like.

And I always say, I don't have a magic wand. And so it becomes getting the skills and developing the curiosity of like, what can we do in the time that we have? And it is a challenge. 

Dr. Linda Bluestein: Yeah. And I know it's, it's unfair for people and it's very frustrating because there are a number of us that don't accept insurance as.

You know, insurance payments, but we can't keep the lights on if we do that because as you pointed out, like there's only so many hours in the day. So if you're spending two hours with each person, it's not like a dermatologist that can see 60 patients in a day. They fly in, they fly out, and the insurance company says, wow, you really did something important.

'cause you removed, you know, a couple quick lesions where the, the assistant is actually putting in the local usually. So they literally come in, do the, you know. Takes them just a minute. So it's, um, it's hard. 

Rachel Rubin, MD: But let me, let me tell you a quick story about why this matters so much and, and the [00:26:00] collaborative effort.

I ha I literally saw a patient this week that is, is a perfect example. So this was a woman who worked at a very high up in a tech company and COVID hit and she got, um. Um, horrible long COVID and horrible symptoms. Dysautonomia like crazy. She came in, uh, like she was on medical leave. She was a shell of a person.

She had pots, she had all these, all these issues with seeing all these doctors. And she came in to see me and I took a thorough history and evaluation and I, and she was 47. And I said to her, I said, oh my God, you have all these things. You of course have all these things I brought up. Connective tissue disorders.

I brought up mast cells and I brought up perimenopause and I said, listen, I'm not gonna fix you with hormones, but I believe if we can fill some gas in your tank on this erratic tank that you have going on, I think it's gonna help. And when I tell you she still had pots. And she still had some [00:27:00] issues, but she became a human again.

She is back to herself. She's now starting a business. She is completely doing amazing, like she's unrecognizable to herself because we added estrogen, progesterone, and testosterone. Her UTIs went away, her joint pain went away. She's like so much better. And she goes to a local, um. A connective tissue disorder clinic that we have here in was the Washington DC area.

And when they do manual work on her neck and get everything back into place, right, her pots get so much better. And so she, I saw her this week, we had a big snow storm in DC and she said, oh my god, Dr. Rubin, I've been doing so amazing. I've been doing so well. But this morning I woke up with this terrible pots flare.

Um, but I got myself through it. I knew what to do, but like, really, I've been doing so great. And I said to her, I said, did you shovel yesterday? And she said, yeah, of course I did. Like we had this huge snowstorm. And I was like, could it be that you like popped something out of place? And she didn't even think of it and she was like, oh my God, that's exactly what [00:28:00] happened, right?

Like her musculoskeletal system just like sort of, uh, you know, popped out of place. So this is that collaborative work, like hormones don't cure her, right? But they improve her quality of life so drastically. And then you work with your, you know, other colleagues to really help, you know, put your body back together.

Dr. Linda Bluestein: And that's why you need a team. You know, when you have these kind of problems, well, even if you don't actually, there's no one doctor that can handle everyone's medical problems. Um, you know, especially as we get older. So that's, that's a great story. And it's so common that people will be doing a lot better and then something will happen.

But once you get to. Point where things are more optimized, like you said, you can, you can handle those dips a lot more easily than when everything is just outta control and you can't even figure out what's correlated with what, again, that's where the time factor comes in, right? You need the time to actually sit there and sort out.

'cause I can't tell you, this probably happened to you a lot too, how many times people say No, there's nothing. Nothing. I can't think of [00:29:00] anything that could have contributed, but as you take more time and you talk to them more. Then you actually can uncover, oh yeah, there was this one thing, or whatever it might be.

So we're gonna take a quick break and when we come back we are gonna talk with Dr. Rubin about why people with connective tissue disorders and mast cell activation syndrome so often have bladder symptoms, pelvic pain, and what might be some hacks that we could deal with these symptoms. We'll be right back.

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Okay, we are back with Dr. Rubin, and I would love to know why so many people with connective tissue disorders, joint hypermobility, mast cell problems, et cetera, have bladder problems. So it could be urinary frequency, it could be urinary urgency, pain, incomplete emptying, but they don't have a UTI. What are some of the common things that you see causing that?

Rachel Rubin, MD: This is super common. And um, and unfortunately when I was trained, this was where everyone got thrown into the crazy bucket like I was taught. If you have allergies, if you have pelvic pain, if you have bladder symptoms, you just get called like crazy patient [00:31:00] and you throw, and like you don't have a good toolbox to help them.

And this is where everyone got the, uh, diagnosis of interstitial cystitis. And the problem is when you, you know, when that's the way you treat things. Um. You don't figure out answers very well. And the reason why everyone hated treating interstitial cystitis is 'cause we didn't have a toolbox that actually gave good diagnosis, a good underlying, you didn't know what was going on with them, so you just threw spaghetti at the wall hoping something would stick and it would only help about 20% of the time, which is probably worse than even placebo would help.

And so these patients were, um, given diagnoses without really good objective criteria and it was a big problem. And so, um, I think we've. A long way since the days that I trained. And, um, I think the reality is, is that we are getting better and better in our diagnostic skills. Not perfect, but better. And I think of, this is where I put on my sex detective hat, and I really think of myself as trying really hard [00:32:00] to listen to the person and do a really thorough physical exam to figure out where is this coming from.

And the smarter I get and the more educated I get in this space, my detective skills get better and better where sometimes, okay, so I break it down into my thought process of by kind of what we think of as regions. Is the pain coming from the local area? Is it a skin problem? Is it a tissue problem? Is it a hormone problem?

Is it a mast cell problem? Is it a nerve problem? I think about the pelvic floor, which is attached to the hips and the low back, right? Giant group of muscles. So if you have a musculoskeletal whole body problem or a connective tissue problem, that is going to affect your pelvic floor, which is gonna affect your vagina and your bladder and your rectum.

And so you think about the pelvic floor, I think about the coquina and the lower spine a lot, um, which I learned from Dr. Goldstein of if you can have sciatica in your leg, you can have sciatica in your bladder or your genitals. And so nerves can cause a [00:33:00] lot of issues. And then again, there's things like endometriosis, which is a mast cell condition in my opinion, and that can live on your bladder, which can cause bladder symptoms.

And so we've got hormonal changes can affect. The health of the bladder, the bladder is full of estrogen and testosterone receptors. So birth control, as you may have heard from Dr. One of the Dr. Goldsteins right, can really affect the health of the bladder and the vulva, which can cause bladder symptoms.

So because of, uh, the way that it works, uh, by. Decreasing testosterone. And so if, if birth control helps the fluctuations of your hormones and helps you in some ways, it actually might be hurting your bladder or your pelvic symptoms. And so we have to weigh the pros and the cons there. We also know that mast cells can get stuck in this vulvar tissue, which can really cause bladder pain, irritation, and.

The health of the pelvic floor. And so there are so many things that can cause these issues, whether it's a musculoskeletal problem, a hormone problem, a nerve problem. And unfortunately when you're a [00:34:00] bendy body, you often have all three. And so it's almost like an onion that you have to peel away to say, okay, let's fix the hormonal component.

Let's get physical therapy involved so we can work on the muscle component. And then if there's a nerve or mast cell problem. We're coming up with new ways and so, you know, other ways to help this problem. And so, you know, it's one of, and then endometriosis is this co I see it constantly where the bladder is being blamed, but it's just being tortured by the endometriosis.

It's actually not the bladder's fault. And so, um, that's, it's, it's so common. But the frustrating thing is no doctor. No one doctor is an expert in all of these different conditions, and that's why it's so fricking frustrating. 'cause if you go with a GI problem, you're gonna get an IBS diagnosis. If you go to a gynecologist, you might get your endometriosis diagnosis.

If you go to a urologist, you might get an interstitial cystitis diagnosis. And it can be so frustrating and overwhelming for patients because [00:35:00] it's hard to know, well, who do I go to next? And also to you. 'cause you have to wait and then you have to try what they do. And so it can take years to peel back the layers of the onion.

'cause for example. Everyone loves physi pelvic floor physical therapy, and I love pelvic floor physical therapists. They are wonderful human beings, and you should definitely see ones that know something about bendy bodies. Um, but if they, if you have a hormone problem, like menopause or birth control causes irritation of your tissue and pain in the vagina and the vulvar opening.

No amount of physical therapy is going to fix that pain because you have a tissue problem that is causing the muscles to react to it. So the muscle work is gonna help, but if you don't fix the tissue problem, you may not save, you know, you may not be fixed or cured, and so you need this multimodal teamwork approach.

I'll be honest, I have never fixed anybody in my life by myself. It is always a pit crew sort of team approach [00:36:00] to help people and, and, and, um. That is overwhelming sometimes, which is why the more I can get a patient to understand what's going on with their body, then it, it's not throwing spaghetti at the wall.

It becomes, Hey, logically speaking, actually endometriosis seems to make the most sense right now. Let's go after that diagnosis first. Right? Or logically speaking, it seems like I have a spine issue. Let's kind of tackle that and then we'll deal with the other things. Does, does that make sense? 

Dr. Linda Bluestein: Yes, totally.

And I have said multiple times on this podcast when I was at my worst, I think one of the biggest mistakes that I made was I kept looking for the one magic thing that was gonna cure my problems, cure my pain. I had terrible sciatica, low back pain, et cetera. And then I had my tarlo cyst surgery, but. I kept thinking that, oh, I just haven't found the one right thing yet.

Not realizing that ultimately I did have surgery, but even after the surgery I had to do a lot of different things, a lot of things in order to get my life back to a place where it was a life worth [00:37:00] living. And my quality of life was just so much better, and my functional capacity was so much better, but I kept.

Thinking that there was one thing, and so as you said, yes, it's multiple things. And that's where I came up with my, you know, men's, PMMS, you know, method, just as a way, a pneumonic as a way of remembering the movement, education, nutrition, sleep, psychosocial, modalities, medications, and supplements. Like, that's the way I think of it is those eight parts, so that I keep cycling back, like, okay, what am I missing?

Or what else, what lever can I pull in this other area to help the person feel better? 

Rachel Rubin, MD: And that is fabulous and I love that, uh, mnemonic because I think it, it is part of the challenge. You know, I've been doing this so long that I get people at all different stages. It's almost like the stages of grief, right?

You get the people who have an immediate flare and they just want the one button that's gonna make it go away. Or you get people who've been in this journey for 20 years and you're trying to give them some hope that there's something they can do. And sort of the psychology behind all of that. How [00:38:00] to help these people, you know, again, meet them where they are and give them what they need to help find the tools that that can help them live.

You know, that resilient quality of life piece. 

Dr. Linda Bluestein: And what about dysautonomia in the bladder? 

Rachel Rubin, MD: It's hard for me to say that I've seen. Just a dysautonomia patient, like, so like that, that's all they have for me. I feel, feel like it, it, I don't know that I've ever seen a patient where they didn't have a hormone and a dysautonomia problem, or a mast cell and a dysautonomia problem.

Like I, I don't know that an isolated dysautonomia patient that I can understand the pathophysiology there. But the reality is, is if it's a nerve, a problem with the, you know, autonomic nervous system. Well, the bladder runs on the autonomic nervous system, right? And so, uh, I can understand how that might be affected.

Dr. Linda Bluestein: And probably some people heard earlier when you said. Put, putting a tampon, putting a tampon in is painful or sex is painful. And they're probably thinking, well, aren't those things supposed to be painful? Because they're so used to [00:39:00] them being painful. So you pointed out about the vestibule and I wanna just make sure that we talk just briefly again about what the vestibule is and why it's such an important part of the body.

'cause you also pointed out in, um, on paused that, that when the, uh, gynecologist puts in the speculum, they usually go right past the vestibule. Right. So, oh, are you gonna, are you gonna show us a visual? 

Rachel Rubin, MD: Hold on. Hold on. 

Dr. Linda Bluestein: Okay. Perfect. 

Rachel Rubin, MD: Only I can have a bookcase of all sex toys and models and devices behind me.

So, um, so if anyone's just listening, I'm gonna describe what I'm doing, but if you're watching, so, so this is a, a, the vulva is everything on the outside, right? The vulva is the labia majora, the. The labia menorah, the inner wings, the clitoris, the hood of the clitoris. Um, and then, um, anything inside the hole inside is the vagina, right?

Where tampons go, where penetration happens, where speculums go, well, there is a transition point inside. This labia menorah, so surrounding this hole, all of this tissue here, and it is that, that's called the vulvar [00:40:00] vestibule and it's very important to know about it. I'm gonna get nerdy on you for a second.

It's very important to know about this tissue because it's often where people have bladder pain, pelvic. Pain. Pain with sex, pain with tampons. It's not in the skin of the labia. It's not in the vagina even. It's in this vulvar vestibule and embryologically. It's actually bladder tissue. It's very similar.

The penis has a urethra that goes through it. Where P comes out of an ejaculate, comes out of, it's the same kind of tissue at this opening that I just showed you. It's actually made from bladder cells and it has lots of estrogen and testosterone receptors in it, and it is very. Delicate and, um, apparently very susceptible to mast cell infiltration.

And so patients who take birth control pills can sometimes have pain in the spot. Patients who've always had pain with tampons, you know, can develop, have often have mast cell conditions that can affect this tissue. People have allergic reactions. They can [00:41:00] develop them from creams or topical yeast medicines or antibiotics.

They can develop an allergic reaction in this area. Menopause is notorious for causing pain and inflammation and irritation in this area. And so, um, the vol, it's, it's almost like one of the best analogies I can come with is sort of the outside of your cheek compared to the inside of your cheek, right?

It is skin compared to sort of a, a more mucosa, a more delicate tissue. And so this vestibule is. Often the culprit of people who have, um, pain with sex or, you know, bladder conditions. And, and you have to make sure your doctor knows how to examine it. And they don't teach this to us in medical school, which is very frustrating.

But if you put a speculum in it. Bypasses it completely. And so we often take a Q-tip and we touch this tissue to find your pain and to see what's happening. Now, this responds very well to topical hormones. It responds very well to the pelvic floor physical therapy often. Um, and then for [00:42:00] people where none of our, where we're exploring topical mast cell stabilizers, right now, there's a clinical trial going on looking at ke toin.

I don't know if I said that right, but I'm learning, I'm learning new things. Uh, people have tried different topical agents to help with the mass. Cells and that's a very big area of interest right now in our community. Um, and then surgically we do remove it in people who just have this infiltration of mast cells that just won't go away.

It won't get better. And so it is so fascinating 'cause it is a part of the body that most doctors have never heard of. 

Dr. Linda Bluestein: I had never heard of it before. Dr. Goldstein taught me about it. And when I gave the talk Atish Wish and was doing some additional research and came across his study where he looked at people with neuro proliferative, uh, v neuro proliferative, vestibular demia.

Did I say that right? Okay, good. Okay. So, uh, the number of people that had like one mask cell condition, if I remember correctly, it was like. Over 60%, but there were some people that had like five mast cell conditions [00:43:00] and had this this problem. So it's something that everyone who has a mast cell problem and or a connective tissue problem needs to be aware of because it is so common and it is so fascinating how you do this Q-tip test because you literally just take a Q-tip, right, and just touch it to the tissue and say, does that hurt?

And you can imagine that if a Q-tip, if it hurts for a Q-tip to touch that area, that yes, other things would be painful, including clothing, right? Or sitting. 

Rachel Rubin, MD: Yeah, and people don't realize like it is not supposed to hurt. Like I have lots of patients where I put a Q-tip on this part of their body and they do not feel pain.

And it's wild because, I mean, just a small Q-tip, as you said, it is excruciating. It feels like a UTI. It feels like shards of glass. It feels like cutting, burning. And you can take that Q-tip and you can put it on the labia menorah right here. And it doesn't hurt. You can push as hard as you want. You can push as hard as you want on the skin out here.

And actually, if you bypass the vestibule, go in the vagina. And push on it without touching the vestibule. It doesn't hurt. And so when you show a patient that [00:44:00] you see their eyeballs go, oh my God, she found my pain and she's not gonna tell me. It's all in my head. She's not gonna tell me I'm crazy. And I didn't.

Fully realize how much that was medicine and how life-changing just that exam can be to validate and find someone's pain and show them that they're not, you know, they're, they're, they're like, we found it is like, it's like a, a transformative experience 

Dr. Linda Bluestein: because it's so frustrating for people, right? They have normal tests, but they still have severe symptoms and they don't know when should I try things besides pelvic floor physical therapy, because if they're.

Even lucky to get that recommendation for pelvic floor physical therapy. Right. I remember when I was having a lot of problems in that area and people saying like, it, it's just a black box, and I'm married to a urologist, you know? Um, but he specialized in prostate cancer. That was his, he did robotic prostate cancer surgery.

So, you know, he didn't understand what was going on. Nobody did. 

Rachel Rubin, MD: You know, it's actually humbling for the doctors and the surgeons when they [00:45:00] themselves get a condition or their wives or, or people they love, and they realize how limited their training truly is. And that empathy, you know, I, I hate to say like, until I, you know, people always say this all the time, well, until I had a daughter, I didn't care about women's issues or until I had cancer, I didn't care about, I didn't know how much the issues.

So it's sort of, as I said, people are kind of waking up to this and saying like, oh my God, it's everywhere. Like it's. Everywhere. Um, and it probably always was, and we just like are seeing it from a new angle. 

Dr. Linda Bluestein: I have a few quick questions before we need to wrap up here. Um, the first one is, what is one hormone myth that you wish would go away?

Rachel Rubin, MD: Um, oh, so many, um, uh, that they're all the same thing and that they're dangerous and that you can't have any of them because most people, uh, first of all, everyone can have vaginal hormones to prevent UTIs, whether you have a history of cancer, blood clots, family history, anything you come at me, vaginal hormones, vaginal estrogen, or vaginal, DHEA.

[00:46:00] Prevent UTIs by more than half. If you go to our website, rachel rubin md.com, we have lots of resources on this, uh, this issue. Uh, a whole page on genital urinary syndrome of menopause and what the guidelines say. We worked very hard to get guidelines going, um, and everyone in your life deserves access to these medications.

Dr. Linda Bluestein: I also want to congratulate you on your work that you did with the FDA and Oh my gosh. It's so, it's so crazy. I do prescribe vaginal estrogen to patients, even though I thought I would never do that. But after learning from you, I was like, this is something that people need and if someone else isn't gonna prescribe it to them, then I'm gonna learn how to do it and I'm going to do it.

So can you tell us why that was so, um, momentous, what you've recently accomplished. 

Rachel Rubin, MD: Yeah. So. So for 20 years, all the labels, uh, for any estrogen product says that these things cause stroke, blood clots, heart attacks, probable dementia, and even the study that they were based on, that the box was put on wasn't true.

And [00:47:00] so the data wasn't true. The science wasn't true, and it was just misinterpreted. And it was a political play to put the box labeling on 20 years ago, and no one removed it because that's how little we care about women's health and prioritize these things. And we tried a couple times and it just, we never got it.

Anywhere with the bureaucracy. And this year, um, the head of the FDA who wrote a chapter in his book, blind Spots, all about hormone therapy and the politics of it, it's fabulous chapter, um, really got, got interested in this topic. And so he brought a group of people together to the FDA, and we talked about how the data, this is the data and this is what we know and this is what we don't know, and this is what we need.

They made the decision to remove the, the blanket labeling that said that these products were dangerous, and we have known that there is no increased risk of any problem, stroke, blood clots, heart attacks, dementia on vaginal hormone therapy, and even systemic or whole body hormone therapy for that matter.

But when it comes to preventing urinary tract infections and helping with pelvic pain, it's a no [00:48:00] brainer. Everybody on earth, every political person on earth, every nonpolitical person on earth agrees that this is the right thing to do. But the problem is we need more doctors to learn how to write the prescriptions.

So whether you're an anesthesiologist or a dermatologist or a a rheumatologist, I need every primary care doc. I need everyone writing this prescription because it is lifesaving. Lifesaving. We publish that. We could save Medicare $22 billion a year if women use vaginal estrogen. And we're only just beginning here.

So we got a lot of work to do to teach people how to do this, and I'm so proud of you for, for saying that you learned how, because if not you who. Right. If not, and, and we cannot just keep saying, well, this isn't my lane, this is everybody's lane. 

Dr. Linda Bluestein: And that's exactly what I thought. Well, if I don't do it, then no one else is gonna do this for this person.

So, uh, before we wrap up, final thing, can you share with us, you've given us lots of hacks, but can you, do you have one more hypermobility hack that you can share with us, and then also tell us where we can learn more about you. 

Rachel Rubin, MD: Um, oh gosh. So [00:49:00] my hypermobility hack is, I need you all to teach me more about hypermobility, and I wanna go back to school.

I wanna be a, I wanna go back to musculoskeletal school. I wanna go back to spine school. I wanna go, I wanna go back to school a million times over. Um, honestly, um, my, my hypermobile patients who do the best, are the ones who do everything you said. But like, they educate themselves, they become interested in it, and they also work on the mindset piece of like, I'm gonna get better.

I don't have to be perfect to feel great, and also to have a great quality of life. And they build their pit crew and their team around them. And so for me, I don't have hyper, I, I'm a little hypermobile, but I, I wouldn't say I have a, any severe, um, um, uh, uh, severe issues and, um. And yet education and understanding and building that pit crew is so important.

And mindset is like the game always is working on your brain, working on your connections, your human connections, your community. Yeah. Having friends like Dr. Bluestein who you can text and ask questions to like that is what makes life worth living and so fun. [00:50:00] 

Dr. Linda Bluestein: No, I love it when we exchange texts. 

Rachel Rubin, MD: Me too.

Yeah, 

Dr. Linda Bluestein: you're, you're such an inspiration. I just, you know, you're doing the most incredible work and thank you so much for what you do. 'cause you are helping half the population, literally half the population, have better quality of life and more years worth living. So thank you you so much. Which 

Rachel Rubin, MD: helps, which helps the other half of the population, it 

Dr. Linda Bluestein: turns out.

Yes, it does. Oh my gosh, yes. You're, you're so, so right. That is so true. And. I know you're super busy, so I'm so grateful to you for taking the time to come on the Bendy Bodies podcast today. 

Rachel Rubin, MD: Thank you for having me, and thank you for everything you're doing.

Dr. Linda Bluestein: I hope you enjoyed that conversation with Dr. Rachel Rubin, and I'm so grateful to her for taking the time to come on the Bendy Bodies podcast. She is such a wealth of knowledge and I love how passionate she is about connective tissue disorders, mast cell activation syndrome, et cetera. So I look forward to having her back.

Please go to bendy bodies podcast.com and submit your questions that you [00:51:00] would like to be considered for part two of my conversation with Dr. Rubin. Thank you so much 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@hypermobilitymd.substack.com. 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 conditions that are still widely misunderstood.

And don't forget, full video episodes are available every week on YouTube at Bendy Bodies Podcast. As many of you know, I offer one-on-one coaching and mentorship for both individuals living with symptomatic joint hypermobility and the healthcare professionals caring for them. You can learn more about these options on the servicesPage@hypermobilitymd.com.

You can find me, Dr. Linda Bluestein on Instagram, Facebook, TikTok X and LinkedIn, all at hypermobility md. As part of our collaboration with the UVA EDS center, we also want to share some helpful resources. For questions or appointment [00:52:00] inquiries, you can contact the UVA EDS center at our UVA EDS center@uvahealth.org or call 4 3 4 2 5 3 8 2 0 0.

You can also find answers to common questions at uva health.com/support/ EDS slash faq. Our incredible production team is human content. You can find them on TikTok or Instagram at Human Content pods. As you know, we love bringing on guests. We need 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 made on bendy bodies should be considered medical advice. Please always consult a qualified healthcare provider regarding your own care. For information about the Bendy Bodies program, disclaimer and ethics policy, sufficient verification licensing terms, HIPAA release terms, or reach out with any questions, please visit bendy bodies podcast.com.

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.[00:53:00] 

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