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

[00:39] Dr. Linda Bluestein: Welcome back, every bendy body, to the Bendy Bodies Podcast. I'm your host, Dr. Linda Bluestein, the Hypermobility MD, a Mayo Clinic-trained expert in Ehlers-Danlos syndromes dedicated to helping you live your best life. I am so excited today to be speaking with my friend Dr. Rachel Rubin.
[00:53] As so many of you know, pelvic floor and hormone problems are extremely common with connective tissue disorders, mast cell activation syndrome, and dysautonomia. In fact, I've interviewed Dr. Irwin Goldstein, Dr. Andrew Goldstein, and also Dr. Kelly Casperson 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've heard that I actually saw Dr. Irwin Goldstein as a patient for some very, very specific problems many, many years ago.
[01:16] 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 is a board-certified urologist and nationally recognized leader in sexual medicine. She is 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 ISSWSH. She helped shape the 2025 AUA guidelines for genitourinary syndrome of menopause and led national efforts to remove the FDA's boxed warning on menopausal hormone therapy. 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.
[02:08] 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 you don't miss any of our special hypermobility hacks. Here we go.
[02:33] 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.

[02:43] Dr. Rachel Rubin: I am thrilled. I actually have been dreaming about this moment, and I'm like, what am I possibly going to say? Because I just want to 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.

[02:56] Dr. Linda Bluestein: Well, that's hilarious because the first thing I have to say is I just finished listening to your Unpaused episode with Dr. Mary Claire Haver. That was such a fantastic episode. I'm going to 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, because I could listen to that episode — and I literally just finished listening to it. And in that conversation, you mentioned connective tissue disorders.

[07:13] Dr. Rachel Rubin: Yes. I did.

Dr. Linda Bluestein: You mentioned connective tissue disorders and mast cell problems, and you told her she really should talk about that on the podcast. And I was like, perfect — I'm going to 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 it's so important.

Dr. Rachel Rubin: Oh, I'm 10 steps ahead of you. You absolutely should be on her show, and I will connect you, because 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, quotable things in there. So that's why I'm mentioning it right away, because for some of the foundational things with hormones and genitourinary syndrome of menopause and things like that, people definitely need to go listen to that episode and just learn from you because you have so much knowledge. And so this feels almost like a part 2 conversation even though they're different podcasts.

Dr. Rachel Rubin: You know what I find — and I'm sure you find this too, and I refer your podcast every single day to patients — this idea that when patients understand their bodies to the level that anyone understands bodies in 2026, they become these fierce advocates for themselves, and they're able to tinker in this toolbox to figure out what they need to do.
So the patient I literally just got out of the room with is starting to realize that, at only 35, she has all these pain syndromes and all these things going on with her body and all these sorts of reactions. And she's now exploring dysautonomia, mast cells, and connective tissue disorders and the big Venn diagrams. I don't know everything about these conditions, and I don't think anybody does. So it's really having her as a partner in this journey as we start to figure out who goes on her pit crew — it's overwhelming but actually helpful. And your podcast and these different resources are so helpful because you're really watching 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 mindset shift — from, oh my gosh, I have all these things going on, nobody knows what's going on with me. You know, I was in that place a number of years ago. I had so much self-pity. I was like, I'm never going to get better. My mood was bad, and I thought, this is it. You talk about quality of life a lot on Unpaused, and it's like, yeah, I don't want to live like this. But then you talk about people becoming a fierce advocate — I love that. It's such a huge mindset shift.

Dr. Rachel Rubin: And I tell my patients when they first come to see me — so again, I'm a urologist, but I do sexual medicine. People come to see me and 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. And what I tell my patients is, while I hate that 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 going to turn you into an advocate. So it's not just going to be you as a patient — you're going to take this, we're going to figure out how to build resilience and what works for you and what you need in your pit crew, but then you're not going to stop there. You're going to help other people.
And so what we're seeing is this massive amount of patient advocacy happening, which I'm obsessed with. This idea of patients banding together and not just sitting around feeling sorry for themselves, but actually changing the world, investing in research, asking for research, getting media coverage, being able to connect to institutions. Finding community around advocacy is so empowering because taking action is part of the healing.

[07:13] Dr. Linda Bluestein: Yes — taking action is part of the healing. I love that. So you're a urologist, as you mentioned, and I don't know if I've ever shared this with you — my husband's a urologist.

[07:21] Dr. Rachel Rubin: Where? In Colorado?

[07:23] Dr. Linda Bluestein: He's retired now.

[07:25] Dr. Rachel Rubin: I did not know that. That's amazing.

[07:27] Dr. Linda Bluestein: Yeah, isn't that funny? So — you're a urologist and you're also an expert in pelvic pain, hormones, sexual health, all these incredible things. For people listening right now who have EDS, hypermobility, POTS, MCAS, etc. — why is it so important for us to talk about these things that you have expertise in?

[07:52] Dr. Rachel Rubin: It's funny because I know so much about that subject, and yet so many of my patients have POTS, EDS, mast cell, and connective tissue disorders where the more I learn, the more I feel like I don't know anything. I get dumber every single day. Truly — the smarter I get, the more I feel completely incapable.
[08:13] I found myself operating on the genitals of patients who have a mast cell condition called neuroproliferative vestibulodynia, where the opening of the vulva is so painful they can't wear tampons, they can't have sex — all the topical things we give them do not work. And for a very small subset of people, we go to surgery. As I'm removing this tissue, doing surgery I've done many, many times for many years, I sit there thinking, I learned more about this body part in the last 12 months than I knew in the last 10 years. I came home and said to my husband, I'm not smart enough to do this anymore. I don't know what I'm doing. And he said, I think that means you're on the right track — it means you care enough to keep learning.
[09:12] And I think again, for people with these conditions, the way I think about it is like this: it's bloodletting and leeches. Back in the 1800s, that's all medicine had. 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. I think about that a lot because we are at a moment where it's like we're opening our eyes to things that have always been there but we never saw before. Now we're asking questions and showing curiosity. And not everybody is. It is like chasing something we know is better ahead, but we haven't fully gotten there yet. It's the messy middle — knowing there is hope ahead, but also the frustrations of our toolbox not quite being there yet. How do you feel about it?

[10:21] Dr. Linda Bluestein: Yeah, I totally agree. And when you said you feel less smart every day — oh my gosh, that perfectly describes how I feel. You learn more and more and you're like, I feel like I know this much but I should know this much. There's just so much out there that we didn't learn in medical school, in residency, in fellowship. I trained as an anesthesiologist, and in medical school, what did we learn about Ehlers-Danlos? Like one sentence. We just did not learn about these things.
[10:56] And I actually have seen Dr. Goldstein as a patient quite a number of years ago, and he helped me tremendously. It's so wonderful because there are so few people in this country who specialize in sexual medicine. And you explain so well on Unpaused how sexual medicine is medicine and how important that part of our life can be to us. I think that's an important thing for you to explain to the audience, if you don't mind, because I have literally had comments on social media when I've had Dr. Irwin Goldstein, Dr. Andrew Goldstein, and Dr. Kelly Casperson on the podcast — people saying, why are you talking about this? Sex is an extra thing, an afterthought. It's not that important to quality of life. People are in pain. Why is this important?

[11:53] Dr. Rachel Rubin: Yeah, and I think that's such a good point. As a quality of life doctor, as a sexual medicine doctor, my job is to meet you where you are and give you what you need. There are people for whom sex is part of their identity, where even in the most pain they've ever had, orgasm is quite comforting to them. Or they don't need a partner to have a sex life. Or sex is the last thing on their mind and they just want to be able to sit without pain. My job is to meet you where you are, give you what you need, and try to help get the biology to make sense as we figure out where in our toolbox we go next.
[12:37] This idea of pleasure, joy, sexual health, intimacy, connection, support — it matters. It matters in longevity. It matters in how we treat ourselves, how we feel about ourselves. And what's so fascinating — I love my job so much, it's insane — is that you can't predict what it means to the person. Unless you ask the question, you don't know what that person needs and wants and how they experience it. So you have to be curious. You have to ask: what does sex look like for you? What do you want it to look like? What's ideal? What's holding you back? What matters to you?
[13:23] Doctors don't routinely ask those questions. And everyone knows what I do for a living because I never stop talking about it, but the reality is people often don't think they can talk about it or think about it. If you're going to have surgery on your pelvis or your spine, or you're going to start a medication for acne that could have severe consequences to your androgen levels, all of that could affect not just your connective tissue and your musculoskeletal and menstrual health, but your sexual health. So pioneers like the Dr. Goldsteins have worked to say, we're not telling you not to do surgery, but we need to look at the sexual health outcomes. And right now we're barely scratching the surface on that — even in quote-unquote regular people, forget about people with connective tissue disorders, mast cell, and the others. The outliers. Which probably aren't such big outliers.

[14:30] Dr. Linda Bluestein: Yes, they are.

[14:30] Dr. Rachel Rubin: They're everywhere. Everywhere. And it's — just that patient I was with moments ago. It's like we're all waking up from a nap and realizing we're seeing things we never looked for before.
[14:45] She asked about pelvic congestion syndrome, and her PT brought it up. That's a perfect example of the journey. When I started this work, everybody had pelvic congestion syndrome, and then Lyme disease — that was always the diagnosis. Then it went to an era where nobody had either of those things. And now it's becoming, well, mast cells may explain some of it, and connective tissue may explain some of it, and Lyme disease may explain some of it, and some people might have pelvic congestion. It's like, with what lens we look at things through, we start getting better and better at putting people into smaller buckets. But it's been a journey.

[15:23] Dr. Linda Bluestein: I love what you said about hormones on Unpaused because I think so often people think 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 — not just estrogen and progesterone, and how they affect you at different stages of your life, but testosterone being such a huge thing for women to be thinking about?

[15:54] Dr. Rachel Rubin: It's so wild how something so fundamentally important to the human cell and to the reproductive future of humanity is completely ignored in medical school and not discussed. Sometimes I wake up in the morning and I'm like, how is this real life? This is half the population and no one's talking about it.
[16:12] The reality is hormones are not good or bad, right or wrong, evil or perfect. They are a fact. They exist in your body and fluctuate with time. Babies don't have significant sex hormones. Puberty is a transition point where you get a big fluctuation — which is why puberty can be a crazy time for people with connective tissue disorders. Then there's a reproductive phase where hormones are fluctuating and some people do great and some people have times of the month where they don't, and the details matter. The world has kind of ignored those details.
[16:56] Then perimenopause — which is not a short period of time. It's probably all of your late 30s, all of your 40s, where you also don't feel like yourself and you go through this wildly fluctuating time period with a drop in androgens, a fluctuation of estrogens and progesterone, a change in ovulation. And then you come to an abrupt halt in a castration event where the whole system turns off, on average at age 52. Everyone experiences this a little differently.
[17:29] By ignoring it and closing our eyes and just saying we don't want to know about this — that's not the right approach. All of that can affect your connective tissue. All of that can affect your inflammation. We know it affects your brain and your heart and your muscles and your connective tissue and all of your organs.
[17:46] And then, just to add another layer of complexity — not all hormones are the same thing. It would be so easy to say, oh, hormones, I can't take those, they're dangerous, I didn't do well with birth control so I can't take hormones. Well, unfortunately that's not true, because estrogen is different from progesterone, which is different from testosterone. Taking a synthetic version through the mouth is different from taking a natural version through a patch on your skin. And if you microdose it into the vagina, that's safe for virtually everybody and prevents urinary tract infections and pelvic pain in an astronomical number of people.
[18:26] And when your doctors don't know this, why should you? That's the challenge — which is why I am on all those podcasts, why I help write guidelines, why I go on Instagram. Not because I want to be the face of anything or want to be popular — I'm actually quite an introvert. But women are dying out there. They're in pain, they can't live the quality of life they want, and they are suffering from urinary tract infections because they're getting outdated advice from well-meaning medical professionals. You have to find the people who are up to date on this information.

[19:13] Dr. Linda Bluestein: And it's so challenging, because I have friends who go to a clinic where I feel like the clinic is truly selling hormones. They have pellets or whatever else they do, and they're going to sell you hormones — they don't actually fully evaluate you like you're talking about, with that level of detail. So how do people find someone who is going to give them the proper evaluation they need in order to write the proper prescriptions?

[19:43] Dr. Rachel Rubin: This is another thing that keeps me up all night. A lot of medicine has been around a long time and has become algorithms and quick things — that's modern medicine, which doesn't work for 50% of the population, which is women.
The thing is, if you have a kidney stone, there's an algorithm: here's what you need to do, either you go to surgery or you don't. You can sometimes train people at different levels of education to help with those algorithms. But when it comes to connective tissue disorders and hormone therapy and the nuances of the safety and efficacy of hormone therapy, we're not at the algorithm level yet. We're still in the customized, bespoke, precision territory of: well, Linda, let's talk about your story specifically and what your body needs. And given that you have a bendy body, you may be more sensitive to this, that, or the other, and we have to tailor this to you. The more education I give you, the more you can help me tailor this to you — and you're not going to get that at a pellet clinic where they took a weekend course and don't know about bendy bodies.
[21:15] You could have the smartest doctor in the world, but if they only have 10 minutes to see you, you are not going to get a great tailored visit. Or if you see someone who took a weekend course but spends 3 hours with you, you still might not get the right thing, because their experience may not work to the level you need.
[21:38] This is part of why I created a course to teach clinicians — almost a basic course to teach clinicians how to start writing prescriptions. The whole premise is: no one taught you how to do this in school, and I get it, and I'm going to start mentoring you. It doesn't mean I know everything or that I'm doing it the right way, but here's how I think about it, here's how I approach it, here's what I'm afraid of, here's the data we have. We've had a lot of people sign up, and it's a start. It's not the whole thing, but it's a start.
[22:04] 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 save the day. I would say ISSWSH is my favorite resource. The International Society for the Study of Women's Sexual Health — these are people who have invested in deeply caring about quality of life and sexual health. We actually brought Dr. Bluestein in to teach us about all the things she knows, 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 hormone management and sexual health. That doesn't mean everyone on the website is the smartest person you've ever met, but it's a really good starting point.

[23:01] Dr. Linda Bluestein: Yeah, I was so honored that you invited me to speak last year at ISSWSH, and it was such a fun conference. I heard you and Mary Claire talking about how fun it is. It was different from the minute I walked in the door. I've been to a lot of anesthesia conferences, some EDS conferences, a variety of different medical conferences — but yeah, it was different. It was really great. It was really fun.

[23:23] Dr. Rachel Rubin: It's a fun vibe.

[23:24] Dr. Linda Bluestein: Yeah, it was a super fun vibe. And you're so right about time. With people with connective tissue disorders and mast cell problems and dysautonomia, they often have so many different symptoms and problems in every system of their body. So if they have a 10-minute visit, the person just throws their hands up and has no idea what to do. I'm glad you brought up the time factor. And I know you've also talked about the insurance problem — insurance rewards procedures and surgeries, not the amount of time you spend with a patient, which doesn't work for 50% of the population.

[23:59] Dr. Rachel Rubin: Even my healthiest patient needs time. I actually had a patient come in the other day who was 16 or 18, pretty young, no medical problems. Her mother was a patient and just wanted her to talk to me — the mom was like, I just want her to learn about her body, learn about sexual health, I want you to have a conversation. And I spent 2 hours with this young woman talking about her medical history, asking her questions, educating her on her anatomy and her body and hormones and how they work. I was not thinking, oh, I wish I had less time. I actually wished I had more time. And she's only lived for 16 years.
[24:40] So to the point we were just discussing — when I have patients with connective tissue disorders who present exactly like you described, even when I give them time, I'm still overwhelmed about where to start, because I am not an expert in dysautonomia and mast cells. I want to help so badly. I'm so empathetic to the situation, and yet I still can't fix it. I don't have a magic wand. So it becomes about developing the curiosity of, what can we do in the time that we have? It is a challenge.

[25:19] Dr. Linda Bluestein: And I know it's unfair and very frustrating. There are a number of us who don't accept insurance payments, but we can't keep the lights on if we do, because as you pointed out, there are only so many hours in the day. If you're spending 2 hours with each person, it's not like a dermatologist who can see 60 patients in a day, where the assistant puts in the local anesthetic and the physician comes in for just a minute. It's hard.

[25:55] Dr. Rachel Rubin: But let me tell you a quick story about why this matters so much and the collaborative effort. I literally saw a patient this week who is a perfect example. This was a woman who worked high up at a tech company. COVID hit, she got horrible long COVID and horrible symptoms — dysautonomia like crazy. She was on medical leave, she was a shell of a person. She had POTS, all these issues, was seeing all these doctors. She came in to see me and she was 47. I took a thorough history and evaluation, and I said to her, 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 going to fix you with hormones, but I believe if we can fill some gas in your tank, I think it's going to help.
[26:55] And when I tell you — she still had POTS, she still had some issues, but she became a human again. She is back to herself. She's now starting a business. She is completely doing amazing. She's unrecognizable to herself because we added estrogen, progesterone, and testosterone. Her UTIs went away, her joint pain went away. She's so much better.
She also goes to a connective tissue disorder clinic here in the Washington, D.C. area. When they do manual work on her neck and get everything back into place, her POTS gets so much better. I saw her this week — we had a big snowstorm in D.C. — and she said, Dr. Rubin, I've been doing so amazing, but this morning I woke up with this terrible POTS flare. I got myself through it, I knew what to do, but I've really been doing great. And I said, did you shovel yesterday? And she said, yeah, of course — we had this huge snowstorm. And I said, could it be that you popped something out of place? She didn't even think of it. And she was like, oh my God, that's exactly what happened. Her musculoskeletal system just sort of popped out of place. So this is that collaborative work. Hormones don't cure her, but they improve her quality of life so drastically. And then you work with your other colleagues to help put the body back together.

[28:19] Dr. Linda Bluestein: Right. And that's why you need a team when you have these kinds of problems — really even if you don't, because there's no one doctor who can handle all of someone's medical problems, especially as we get older. 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 a point where things are more optimized, like you said, you can handle those dips a lot more easily than when everything is out of control and you can't even figure out what's correlated with what.
[28:47] And that's where the time factor comes in again — you need time to actually sit there and sort that out. I can't tell you how many times people say, no, I can't think of anything that could have contributed. But as you take more time and talk to them more, you uncover, oh yes, there was this one thing.
[29:09] So we're going to take a quick break, and when we come back, we are going to talk with Dr. Rubin about why people with connective tissue disorders and mast cell activation syndrome so often have bladder symptoms and pelvic pain, and what some hacks might be for dealing with those symptoms.

[30:54] Dr. Linda Bluestein: 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, etc., have bladder problems. It could be urinary frequency, urinary urgency, pain, incomplete emptying — but they don't have a UTI. What are some of the common things you see causing that?

[31:14] Dr. Rachel Rubin: Yeah, this is super common. And unfortunately, when I was trained, this was where everyone got thrown into the crazy bucket. I was taught that if you have allergies, pelvic pain, bladder symptoms, you just get called a difficult patient and there's no good toolbox to help. This is where everyone got the diagnosis of interstitial cystitis. The problem with that approach is you don't figure out answers very well. Everyone hated treating interstitial cystitis because there was no toolbox that gave good diagnostic grounding — you didn't know what was going on, so you just threw spaghetti at the wall hoping something would stick. It would only help about 20% of the time, which is probably worse than placebo would do. These patients were given diagnoses without good objective criteria, and it was a big problem.
[32:11] I think we've come a long way since then. We are getting better and better in our diagnostic skills — not perfect, but better. I put on my sex detective hat and really try hard to listen to the person and do a thorough physical exam to figure out where this is coming from. And the more educated I get, my detective skills get better and better.
So here's how I break it down by region: Is the pain coming from the local area? Is it a skin problem? A tissue problem? A hormone problem? A mast cell problem? A nerve problem? I think about the pelvic floor, which is attached to the hips and the low back — this 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 going to affect your vagina, your bladder, and your rectum. I think about the cauda equina and the lower spine a lot — something I learned from Dr. Goldstein — because if you can have sciatica in your leg, you can have sciatica in your bladder or your genitals, and nerves can cause a lot of issues.
Then there are things like endometriosis, which in my opinion is a mast cell condition, and it can live on your bladder and cause bladder symptoms. Hormonal changes can affect the health of the bladder — the bladder is full of estrogen and testosterone receptors. Birth control, as you may have heard from one of the Dr. Goldsteins, can really affect the health of the bladder and the vulva by decreasing testosterone, which can cause bladder symptoms. So if birth control helps the fluctuations of your hormones and helps you in some ways, it might actually be hurting your bladder or your pelvic symptoms. We have to weigh the pros and cons there.
[34:09] We also know that mast cells can get stuck in vulvar tissue, which can cause bladder pain, irritation, and affect the health of the pelvic floor. So there are so many things that can cause these issues — musculoskeletal, hormonal, nerve-related. And unfortunately, when you're a bendy body, you often have all three. It's almost like an onion you have to peel away: let's fix the hormonal component, get physical therapy involved for the muscle component, and if there's a nerve or mast cell problem, we come up with new ways to address that.
[34:50] And endometriosis — I see it constantly where the bladder is being blamed, but it's just being tortured by the endometriosis. It's not the bladder's fault.
[34:58] The frustrating thing is that no one doctor is an expert in all of these different conditions. If you go with a GI problem, you get an IBS diagnosis. If you go to a gynecologist, you might get an endometriosis diagnosis. If you go to a urologist, you might get an interstitial cystitis diagnosis. It can be so overwhelming for patients — it's hard to know who to go to next, and you have to wait and then try what they recommend. It can take years to peel back the layers of the onion.
[35:41] For example, everyone loves pelvic floor physical therapy, and I love pelvic floor physical therapists — they are wonderful human beings, and you should definitely see ones who know something about bendy bodies. But if you have a hormone problem like menopause or birth control causing irritation of your tissue and pain in the vagina and 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. The muscle work will help, but if you don't fix the tissue problem, you may not be fixed. You need this multimodal team approach.
[36:22] I'll be honest — I have never fixed anybody by myself. It is always a pit crew sort of team approach. And the more I can get a patient to understand what's going on with their body, then it's not throwing spaghetti at the wall. It becomes: logically speaking, endometriosis seems to make the most sense right now — let's go after that diagnosis first. Or logically speaking, it seems like I have a spine issue — let's tackle that and then we'll deal with the other things. Does that make sense?

[36:59] Dr. Linda Bluestein: Yes, totally. And I have said multiple times on this podcast that when I was at my worst, one of the biggest mistakes I made was I kept looking for the one magic thing that was going to cure my problems — my terrible sciatica, my low back pain. I had my Tarlov cyst surgery, but I kept thinking I just hadn't found the one right thing yet. Not realizing that ultimately, even after the surgery, I had to do a lot of different things in order to get my life back to a place where it was worth living and my quality of life and functional capacity were so much better.
[37:39] That's where I came up with my MENS PMMS method — just a mnemonic as a way of remembering movement, education, nutrition, sleep, psychosocial, modalities, medications, and supplements. Those 8 parts so that I keep cycling back: okay, what am I missing? What lever can I pull in another area to help the person feel better?

[38:02] Dr. Rachel Rubin: And that is fabulous. I love that mnemonic, because the challenge is real. I get people at all different stages — it's almost like the stages of grief. You get the people who have an immediate flare and just want the one button that's going to make it go away. Or you get people who've been on this journey for 20 years and you're trying to give them some hope that there's something they can do. The psychology of how to help these people — meeting them where they are and giving them what they need to find the tools that help them live that resilient quality of life — is always present.

[38:40] Dr. Linda Bluestein: And what about dysautonomia and the bladder?

[38:43] Dr. Rachel Rubin: It's hard for me to say that I've seen a pure dysautonomia patient — like that's all they have. I don't know that I've ever seen a patient who didn't also have a hormone problem or a mast cell problem alongside the dysautonomia. I can't fully understand the pathophysiology of isolated dysautonomia. But the reality is, if it's a problem with the autonomic nervous system, well, the bladder runs on the autonomic nervous system — so I can understand how it would be affected.

[39:15] Dr. Linda Bluestein: And probably some people heard you mention earlier that putting in a tampon 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 them being painful. You pointed out the vestibule, and I want to make sure we talk briefly about what the vestibule is and why it's such an important part of the body. Because you also pointed out on Unpaused that when the gynecologist puts in the speculum, they usually go right past the vestibule. Are you going to show us a visual?

[39:49] Dr. Rachel Rubin: Hold on.

[39:50] Dr. Linda Bluestein: Okay, perfect.

[39:51] Dr. Rachel Rubin: Only I can have a bookcase of sex toys and models and devices behind me. So if anyone's just listening, I'm going to describe what I'm doing, but if you're watching, you can follow along.
[40:03] The vulva is everything on the outside — the labia majora, the labia minora, the inner wings, the clitoris, the clitoral hood. Anything inside the opening is the vagina, where tampons go, where penetration happens, where speculums go. Well, there is a transition point inside the labia minora, surrounding that opening — that tissue is called the vulvar vestibule.
[40:31] It's very important to know about it. I'm going to get a little nerdy for a second. This tissue is often where people have bladder pain, pelvic pain, pain with sex, and pain with tampons. It's not the skin of the labia. It's not even in the vagina. 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 urine and ejaculate come out, and the tissue at this opening in the vulva is made from the same kind of cells. It has lots of estrogen and testosterone receptors in it, it is very delicate, and apparently very susceptible to mast cell infiltration.
[41:15] Patients who take birth control pills can sometimes have pain in this spot. Patients who have always had pain with tampons very often have mast cell conditions that affect this tissue. People can develop allergic reactions here — from creams, topical yeast medicines, or antibiotics. Menopause is notorious for causing pain, inflammation, and irritation in this area.
[41:45] One of the best analogies I can offer is the outside of your cheek compared to the inside of your cheek — skin compared to a more delicate mucosa. This vestibule is often the culprit for people who have pain with sex or bladder conditions, and you have to make sure your doctor knows how to examine it. They don't teach this in medical school, which is very frustrating. If you put a speculum in, it bypasses the vestibule completely. So we often take a Q-tip and touch this tissue to find the source of pain and see what's happening.
This area responds very well to topical hormones. It responds very well to pelvic floor physical therapy. And for people where those don't work, we are exploring topical mast cell stabilizers right now. There's a clinical trial going on looking at ketotifen — I'm still learning new things. People have tried different topical agents to help with the mast cells, and that's a very active area of interest in our community. And then surgically, we do remove this tissue in people who just have this infiltration of mast cells that won't go away and won't get better. It is such a fascinating part of the body, and most doctors have never heard of it.

[43:01] Dr. Linda Bluestein: I had never heard of it before — Dr. Goldstein taught me about it. And when I gave the talk at ISSWSH and was doing some additional research, I came across his study where he looked at people with neuroproliferative vestibulodynia. The number of people who had like one mast cell condition — if I remember correctly, it was over 60% — but there were some people who had like 5 mast cell conditions and had this problem. So it's something that everyone with a mast cell problem and/or connective tissue problem needs to be aware of, because it is so common.
[43:38] And it is so fascinating how you do this Q-tip test — you literally just take a Q-tip, touch it to the tissue, and ask, does that hurt? And you can imagine that if a Q-tip touching that area hurts, yes, other things would be painful too, including clothing or sitting.

[43:55] Dr. Rachel Rubin: Yeah. And people don't realize it is not supposed to hurt. I have lots of patients where I put a Q-tip on this part of their body and they feel no pain. And it's wild, because just that small Q-tip, as you said, can be excruciating for others. It feels like a UTI. It feels like shards of glass. It feels like cutting, burning. And you can take that same Q-tip and put it on the labia minora right there and it doesn't hurt. You can push as hard as you want on the skin on the outside. And if you bypass the vestibule and go into the vagina and push without touching the vestibule, it doesn't hurt.
[44:28] When you show a patient that, you see their eyes go wide — oh my God, she found my pain and she's not going to tell me it's all in my head. She's not going to tell me I'm crazy. I didn't fully realize how much that was medicine and how life-changing that exam can be — to validate and find someone's pain and show them that they're not imagining it. "We found it" is a transformative experience, because it's so frustrating for people.

[44:58] Dr. Linda Bluestein: They have normal tests, but they still have severe symptoms and they don't know when to try things beyond pelvic floor physical therapy — because if they're even lucky to get that recommendation, right? I remember when I was having a lot of problems in that area and people said, it's just a black box. And I'm married to a urologist, but he specialized in prostate cancer — he did robotic prostate cancer surgery. So he didn't understand what was going on. Nobody did.

[45:26] Dr. Rachel Rubin: It's actually humbling for the doctors and surgeons when they themselves get a condition, or their wives or people they love get one, and they realize how limited their training truly is. And that empathy — people say this all the time: until they had cancer, I didn't realize how much the issues mattered. It's sort of everyone waking up and saying, oh my God, it's everywhere. It probably always was. We're just seeing it from a new angle.

[46:01] Dr. Linda Bluestein: I have a few quick questions before we need to wrap up. The first one is: what is one hormone myth that you wish we could permanently debunk?

[46:10] Dr. Rachel Rubin: Oh, so many. But the big one is that they're all the same thing and that they're dangerous and that you can't have any of them. Because most people — first of all, everyone can have vaginal hormones to prevent UTIs, regardless of a history of cancer, blood clots, family history, anything. Vaginal estrogen or vaginal DHEA prevent UTIs by more than half. If you go to our website, RachelRubinMD.com, we have lots of resources on this — a whole page on genitourinary syndrome of menopause and what the guidelines say. We worked very hard to get those guidelines going, and everyone in your life deserves access to these medications.

[46:44] Dr. Linda Bluestein: And I also want to congratulate you on your work with the FDA. I do prescribe vaginal estrogen to patients even though I thought I never would. But after learning from you, I was like, this is something people need, and if someone else isn't going to prescribe it to them, then I'm going to learn how to do it. So can you tell us why what you've recently accomplished was so momentous?

[47:15] Dr. Rachel Rubin: Yeah. So for 20 years, all the labels for any estrogen product said that these things cause stroke, blood clots, heart attacks, probable dementia. And even the study the box warning was based on wasn't true — the data was misinterpreted. It was a political move to put that box labeling on 20 years ago. And no one removed it, because that's how little we have prioritized women's health. We tried a couple of times and never got anywhere with the bureaucracy.
[47:43] And this year, 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 a fabulous chapter — got really interested in this topic. He brought a group of people together to the FDA, and we talked about what the data shows, what we know, what we don't know, and what we need. And they made the decision to remove the blanket labeling that said these products were dangerous.
[48:13] We have known that there is no increased risk of any problem — stroke, blood clots, heart attacks, dementia — on vaginal hormone therapy. And even with systemic hormone therapy for that matter. But when it comes to preventing urinary tract infections and helping with pelvic pain, it's a no-brainer. Every person on Earth, every political and non-political person on Earth, agrees this is the right thing to do. The problem is we need more doctors to learn how to write the prescriptions. Whether you're an anesthesiologist or a dermatologist or a rheumatologist, I need every primary care doctor writing this prescription, because it is life-saving. We published that we could save Medicare $22 billion a year if women used vaginal estrogen, and we're only just beginning. So we have a lot of work to do. And I'm so proud of you for saying you learned how, because if not you, who? We cannot keep saying, well, this isn't my lane. This is everyone's lane.

[49:11] Dr. Linda Bluestein: And that's exactly what I thought — if I don't do it, then no one else is going to do this for this person. Before we wrap up, final thing: do you have one more hypermobility hack to share with us? And then tell us where we can learn more about you.

[49:30] Dr. Rachel Rubin: My hypermobility hack is: I need you all to teach me more about hypermobility. I want to go back to musculoskeletal school, spine school — I want to go back to school a million times over.
[49:42] Honestly, my hypermobile patients who do the best are the ones who do everything you described, but they also educate themselves, they become interested in their condition, and they work on the mindset piece — I'm going to get better, I don't have to be perfect to feel great and to have a great quality of life. And they build their pit crew and their team around them.
[50:02] For me, I'm a little hypermobile but I wouldn't say I have any severe issues. And yet education, understanding, and building that pit crew are so important. Mindset is always the game — working on your brain, working on your connections, your human connections, your community, having friends like Dr. Bluestein who you can text and ask questions to. That is what makes life worth living and so fun.

[50:30] Dr. Linda Bluestein: Oh, I love it when we exchange texts. You're such an inspiration. You're doing the most incredible work, and thank you so much for what you do, because you are helping half the population have better quality of life and more years worth living.

[50:50] Dr. Rachel Rubin: Which helps the other half of the population too, as it turns out.

[50:52] Dr. Linda Bluestein: Yes! You're 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.

[51:04] Dr. Rachel Rubin: Thank you for having me, and thank you for everything you're doing.

[52:02] 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, and so much more. I look forward to having her back. Please go to bendybodiespodcast.com and submit your questions that you would like to be considered for part 2 of my conversation with Dr. Rubin.
[52:26] 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 at 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.
[52:56] 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 services page at hypermobilitymd.com. You can find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, X, and LinkedIn — all at HypermobilityMD.
[53:15] As part of our collaboration with the UVA EDS Center, we also want to share some helpful resources. For questions or appointment inquiries, you can contact the UVA EDS Center at [email protected] or call 434-253-8200. You can also find answers to common questions at uvahealth.com/support/eds/FAQ.
[53:41] 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 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 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 to chat with any questions, please visit bendybodiespodcast.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.