Episode 73
Dr. Chailee Moss on the JAMA Article “Experiences of Care and Gaslighting in Vulvovaginal Disorders"
If you've ever been told "just relax" while in vulvovaginal pain, you're not alone—and you're definitely not crazy. This conversation is about the silent epidemic women keep getting dismissed over.
This episode hit me hard. Not because the stories were shocking—but because they weren’t. Dr. Chailee Moss joined me to talk about the groundbreaking study she co-authored, recently published in JAMA, that finally puts numbers to the gaslighting so many of our patients experience.
We dug into what dismissal looks like in a medical setting and how phrases like "have a glass of wine" or "your exam is normal" can cause lasting harm. For patients living with vulvovaginal pain, being told it’s "all in your head" is not just invalidating—it can delay care, destroy trust, and lead people to give up entirely.
Dr. Moss shared how her own experiences as a patient shaped her path as a physician. We also talked about the deep-rooted system issues in training and documentation that continue to reinforce doubt instead of compassion. The problem isn’t just one bad doctor. It’s a medical culture that doesn't know how to listen to women in pain.
This isn’t just about statistics. It’s about rebuilding the broken parts of medicine so more women feel seen, heard, and actually treated. If you’ve felt dismissed by the system or know someone who has, this episode is for you.s
Highlights:
- Why patients with vulvovaginal pain are often told to "just relax".
- The power of naming gaslighting and measuring it in clinical care.
- How medical training creates blind spots around pain and gender.
- The importance of early diagnosis to prevent years of unnecessary suffering.
- Resources and organizations helping patients find the right care.
If this episode resonated with you, please subscribe, leave a review, and share it with someone who needs to hear it. Let’s keep pushing for better care.
Dr. Moss’s Bio:
Dr. Chailee Moss is a gynecologist specializing in vulvovaginal disorders in Washington, D.C. She first became interested in vulvovaginal disorders at the University of North Carolina at Chapel Hill where she earned an M.D. in 2013. She engaged in research on pain and gynecologic surgery during residency training in Ob/Gyn at The Ohio State University where she was a chief of resident education and earned awards for her research and clinical care.
Upon graduation, Dr Moss joined the faculty at Johns Hopkins University where she continued to research pain and publish original research in this and other areas. Dr. Moss is board certified by the American Board of Obstetrics and Gynecology and has been an active member of the Society for Academic Specialists in OB/GYN, serving on the research committee and paper award committee. In her free time she enjoys cooking, camping, and travel with her husband and their three energetic children in Baltimore, MD.
Resources:
The National Vulvodynia Association
Get in Touch with Dr. Moss:
Get in Touch with Dr. Rahman:
Transcript
Welcome back to another episode of Gyno Girl Presents Sex, Drugs, and Hormones. I'm Dr. Samina Rahman. And you guys heard my intro. This is amazing Dr. Kylie Moss. Yay! It's Dr. Kylie Moss! Yeah, I actually like, we met a couple of times at Ishwish, but we've never really had any extensive conversation. I know you obviously because I'm...
Chailee Moss (:my God, you're so nice. Well, thank you for having me.
Chailee Moss (:Enough.
Dr Sameena Rahman (:President Jill and Andrew Goldstein always talks about how amazing you are. So I'm glad that we're actually getting a chance to connect one-on-one and the work that we do is so amazing with the Center for Volvulvaginal Diseases and it's so important. And this is so important, but before we get into it, I want you to tell the listeners what got you into volvulvaginal medicine and sexual medicine right? We all come at some like circuitous routes. And so I like...
Chailee Moss (:All right.
I know.
Chailee Moss (:Yeah!
Chailee Moss (:Yeah.
Dr Sameena Rahman (:know, like what inspired you to become, you know, to come into this space of global vaginal disease and sexual medicine.
Chailee Moss (:Yeah, I mean, I came to it as a patient and I think a lot of us do come as patients, but I was, yeah, yeah, there you go. Yeah, so like I struggled for a long time, saw lots of healthcare providers. I mean, a lot less than many people seem to be clear, but still have people,
Dr Sameena Rahman (:Yeah, Roger does this.
Dr Sameena Rahman (:So we can navigate the system a little bit better as per a little bit.
Chailee Moss (:Right and I but I was a medical student still with like very little understanding of what was happening and it wasn't until I was in medical school that I truly got help and the person who helped me was at UNC which is where I was at med school and University of North Carolina Chapel Hill and and yeah go I can't say go heels because my husband went to Duke.
Dr Sameena Rahman (:That's where I went to med school too.
Dr Sameena Rahman (:Yeah, so this is my dilemma, right? Because I went to Duke for college, and then I went to UNC for med school. Yeah, because I'm from North Carolina. I'm from North Carolina originally.
Chailee Moss (:you did what? Yeah, so he's... Yeah.
Yeah, so he also went to Duke undergrad and then went to UNC for law school. So we have like, you know, he can't really be that mad at me because he also went there for grad school. So
Dr Sameena Rahman (:No, we have to go in.
Dr Sameena Rahman (:Well, and so we don't have a route for the Tar Heels and you guys that listen know that I don't root for the Tar Heels but I love UNC Medical and I love the University of North Carolina and I love North Carolina. Are you from the area at all? I didn't even know.
Chailee Moss (:That's right. Same. I know. I know. I'm not, but my family moved there while I was in college. And so after college, I came down to North Carolina, actually taught high school in, Teach for America for a couple of years, and then went to med school. Yeah. Yeah.
Dr Sameena Rahman (:Yeah, yeah, wonderful. That's the opposite because I grew up in North Carolina and then I ended up my family moved to Virginia when I was in college and you're in the DC area. That's so interesting. Okay, so you were at UNC. So we should talk about
Chailee Moss (:Oh, okay. All right. Yes. Yeah. Yeah, it's a very nice area. Yeah. Yeah. So I was at UNC, this woman named Denizal Naun who's amazing, she helped me. And yes, and she was just this very, you know, supportive mentor who said, Look, nobody's doing this work. We're out here doing case reports because we don't even know what direction to go in with our bigger studies. How about
Dr Sameena Rahman (:Yes, I love her. She was there when I was a student too.
Chailee Moss (:you know, if you ever want to do any of this stuff, I'll put you on a case report. We'll do a paper together, which we did. We published a case report based on some work I did in med school. And then I went to residency OB-GYN residency. you know, I think I mean, even on my clerkship, you know, again, love UNC, but I wasn't a clerkship in a more rural location. And I remember saying I was interested in patients with pain conditions and looking being looked at like, you know, I had
horns growing out of my head. Like someone told me, don't want to do that. That's not what you want to do. And those patients are too challenging and it's really hard work. And I would never want to do that. Someone told me that. you know, as your young impressionable medical student, you know, in my head, I was like, wait, but I was one of those patients that you're talking about. But also, like, I don't, you know, I
Dr Sameena Rahman (:Yes. I don't want to it. Yeah.
Dr Sameena Rahman (:Right?
Chailee Moss (:don't know what's out there in this specialty and I'm just going to file that away and kind of go on with my business. But it did it was a little bit of a deterrent having someone say that to me. So in residency. Yeah.
Dr Sameena Rahman (:Yeah. Well, I'll just interface by saying that like our system is set up to fail patients with vaginal pain and sexual pain and menopausal medicine. You know, and I say this on this podcast a lot, like we were expected. I've been a general OBGYN before I was.
11 years ago I was practicing general overdrive and you you're in a system, was in an academic system where you had to see 30, 40 patients a day and the truth be told like I still think about those patients where you know you're running around doing obstetrics and you're thinking I have to go there, I have to go there.
you know, and you're leaving the room and someone says, but you know, I have this pain, Dr. Ramon or you know, Dr. and a lot of it is our own discomfort. And I feel like it's like, don't, you know, this, especially with vestibulodinia and all the data we have is like what, from the last 10 to 14 years, right? This is not something that like, and I graduated, you know, medical school about 20 years ago. So like it wasn't anything that we ever learned, but like, you know, you know, so it's just like,
Chailee Moss (:Yeah
Chailee Moss (:Yes.
Chailee Moss (:No.
Dr Sameena Rahman (:you had to learn it after. And the reality is, you know, a lot of clinicians don't have the ability to do that in their situation. And so there are ways I think to handle it better than the ways that we hear about on this paper, which I'll talk about, but it's unfortunately, it's like, it's a system issue too.
Chailee Moss (:Right.
Chailee Moss (:And I think now that I realize is that the reason those patients are hard, especially in, know, 2000, whatever that was, I was talking to that person, is we didn't have the expertise or the time. Like you talked about, like not having the time to spend with patients and also not having the knowledge to know what to do. And I think those are the two most important ingredients in figuring out these, these pain problems. And the time is not there in training, certainly. And for a lot of clinicians, it's not there now in
whatever they, however they wanna structure their practice, they can't keep the lights on if they spend enough time to figure these things out with patients. And so I think that's what I was getting from that person, but what I heard is like, that's not a good idea. And so in residency, I studied pain, like I was still interested in it, but I studied it through the lens of like what medications we should use to treat people's pain for surgery.
Dr Sameena Rahman (:Absolutely.
Dr Sameena Rahman (:Yeah.
Dr Sameena Rahman (:Yeah.
Chailee Moss (:So I did, and you we're in the middle of the opioid crisis in Ohio. And so seeing a lot of people who are getting prescribed big amounts of opioids for minor surgeries and like, okay, just trying to figure out what are we prescribing? What should we be prescribing? And I carried that work into my post residency work and also did some work with like colposcopy and abnormal path tests. And then, you know, got reconnected with Andrew Goldstein and Jill Craft through
Gulta Yagdi who's still at Hopkins and does lot of addeninus research, but she knew those guys from GW and she introduced me to them. And so I spent some time with them and reconnected with something that's always been of interest to me. what I now realize is that anytime there's something that people are like, who wants to study that or that's really hard. It's like an opportunity because there's such a dearth of knowledge, right? People stay away from it because we don't understand it. That means there's like so much to learn.
And I think that that is what sort of lights me up about this stuff.
Dr Sameena Rahman (:Exactly.
Yeah. And I think that's important one before we talk about the study is that so many of patients that, you know,
that talk about their issues and how they were spoken to. Like a lot of it is the fact that we didn't study it because we don't take women's health and women's health issues seriously enough that we weren't researching women's health and certainly not sexual health or vulvobaginal health. It's gonna be obstetric health. It's gonna be things that are related to reproductive capacity and those kinds of things. But I feel like in the pain world and women's pain and sexual pain and menopausal, all of that is just like the least of the
Chailee Moss (:Yes.
Chailee Moss (:Yeah.
Dr Sameena Rahman (:research areas. And if it weren't for like centers like yours and you know, Ishwish and ISSVD and all these organizations, I mean, we're the ones pushing for the research, right? Like we're the ones who are taking care of the patients who asking the questions.
Chailee Moss (:Right.
Chailee Moss (:Great.
Yeah, agreed completely. Yeah, yeah. think it's also, you know, we've been thinking of it like pain research, think has traditionally been like in terms of like directed towards like a utilitarian focus, like we got to do what these people need to like get them back to work and like just get them to be members of society that can do whatever they need to do. But it turns out if you can't have meaningful sexual relationships, if you have vulvobadgeral pain, they profoundly affect.
the other areas of your life. So it's not like we can say this isn't utilitarian work. It's profoundly impactful.
Dr Sameena Rahman (:Yes.
Dr Sameena Rahman (:Absolutely. And so many times it's even life transformative and life saving in so many ways too, for so many people, especially the ones, not only, you know, obviously like things like elderly women with general urinary system menopause, talk about as life saving, but you know, people on the precipice of like doing something to themselves because they're living in, right? Like this is...
Chailee Moss (:Absolutely.
Chailee Moss (:Yeah, yeah, like, I mean, people who have persistent genital arousal syndrome syndrome, we know have tremendously high rates of thoughts of self harm. So, you know, we have to do better and know better to help these folks.
Dr Sameena Rahman (:Yeah.
Dr Sameena Rahman (:So obviously this sets the groundwork for what we're gonna talk about, which is the amazing paper that was released out of the JAMA yesterday that you and all the colleagues have been working on. So tell us about how you came to this paper and then all the details. Let's go.
Chailee Moss (:Yeah.
Yeah.
Chailee Moss (:Yeah, yeah, well patients tell us all the time these stories about how they feel dismissed or invalidated and this term like this sort of buzzy term gaslighting is thrown around a lot and we really wanted to dive into like what does that mean and how is it important to patients experiences? I think that the really important thing we wanted to do was center the patient experience through this whole study. So we looked at testimonials from patients.
to talk about sort of dismissive behaviors they've encountered and incorporated our own understanding of what patients had told us. And we made a survey and then we had TightLift, which is a wonderful advocacy organization and the National Bulbidinia Association. had an officer from both those organizations look at our survey and say like, yes, these are the concerns that we as patients feel need to be measured and addressed.
And so then we administered that survey once we had revised it to patients that are coming to our clinic. Obviously our clinic is very specialized. It's people who've seen three, four people before they've, and they haven't figured out what's going on. So they have pretty significant vulvovaginal diseases when they come to us. And so that's a very narrow population, but it was a good population to start with in terms of.
Dr Sameena Rahman (:Mm-hmm.
Chailee Moss (:learning what our patients are experiencing. It doesn't generalize to the broader population yet, and I think that's like the big next step.
Dr Sameena Rahman (:Yeah, absolutely. And I think that's, you know, some like for like even for me, once seeing all the patients that we do, we hear the same stuff over and over again. And every once in a while, like, someone really say that. But then nothing really surprises you, right? Like sometimes I'm like, Oh, yeah, you were told your body's meant for pain and that you should be able to deal with it. Okay. Like, you know, things like you're just like,
Chailee Moss (:I know, like.
Chailee Moss (:Oh, it's crazy. And I also think like I've been talking about this study and some of the things we found and I think in our circles the like just have a glass of wine is shorthand for the dismissive behavior because we all hear it so much and know that patients hear that so much that is just like oh yeah just get they got told just to have a glass of wine meaning like they were just shuffled off so that the next patient could come in. Yeah, yeah relax. But you know, um
Dr Sameena Rahman (:Yes.
Dr Sameena Rahman (:Yeah. Relax, we have a glass of wine.
Chailee Moss (:in talking to people outside of this study and outside of the sexual medicine community, they were like, wait, people say that? And it's yes, all the time, you know, in our
Dr Sameena Rahman (:Don't you think secondary like thing that we have for she were told that are like some have I mean you talked to any PT and they're like, Yeah, of she was told to have a glass of wine. know, but you're right. That's outside of that.
Chailee Moss (:Yeah!
Chailee Moss (:Yeah
And so we, but in order to draw attention to it, we had to measure it, right? You can't just say like, my patients say this all the time and the numbers are powerful. To say, you know, over 40 % of the patients who come to us were made to feel crazy at some point in their care is much more powerful than saying patients are often made to feel crazy, right? And it's like having the numbers to back it up is huge.
Dr Sameena Rahman (:Great, all right.
Dr Sameena Rahman (:Yeah, well, let's talk about the numbers because you guys came up and you had some great statistics that really demonstrated the huge amount of really testimonial injustice that we see with these patients, right? The idea that we don't believe patients, that we don't feel that what they're telling is the truth or maybe we don't think that what's happening to them is real, you know?
Chailee Moss (:Right, right. mean, 23 % of patients were told that this was related to them being too high strung or too uptight, that that was the root of their problem, or that they had, you know, just the problem was just relaxation. Like 41 % of our patients were told that they just needed to relax. You know, I think the thing that was really distracting to patients was being told that their exam was normal, even though they had significant pain during the exam.
Dr Sameena Rahman (:Alright.
Chailee Moss (:And it's true that you may not have visual findings on exam that are abnormal, but that is, it's very different as a patient to hear when you're screaming and crying and intolerant of what everybody seems to be able to tolerate, which is like just a path test. And then be told everything's normal, right? You're like in your head, that can't be right. And I've been on that side as a patient and know how distressing it is. So, but yeah, like 26.
Dr Sameena Rahman (:and
Dr Sameena Rahman (:Mm-hmm.
Dr Sameena Rahman (:Right. Yeah.
Chailee Moss (:percent of patients who had significant pain during the exam were told that that was normal. And that's incredibly distressing. Yeah. And so, you know, and we also sort of ask people like to rate their distress, like if zero is no distress and 10 is the worst distress you've ever experienced, being made to feel crazy was the most distressing to patients. And that's why we included that term gaslight in the title. It is a buzzy term. It is a term that people have a lot of strong feelings about.
Dr Sameena Rahman (:so much.
Chailee Moss (:But being made to feel crazy, whether it's, you know, think a lot of times it's not malicious on the part of the healthcare provider. It's just not knowing. But it's still being made to feel crazy. I mean, that's, it's a distressing experience.
Dr Sameena Rahman (:Right.
Dr Sameena Rahman (:I mean, it's based in sort of like, you know, the historical, I don't know, misogyny, patriarchy, whatever you want to call it, that is women's healthcare, right? Like hysteria is the future.
Chailee Moss (:Yeah, it's women's healthcare, but this project has really made me reflect on our medical education, which you and I went to the same place, and I thought it was phenomenal. But I think back to this idea that every single note we write inherently doubts the patient's account. It's crazy that every sentence starts with the patient reports, the patient notes. It's like, well, if the
Dr Sameena Rahman (:Yes. Yes.
Dr Sameena Rahman (:All right.
Chailee Moss (:patient reports significant pain, why wouldn't we say the patient experiences significant pain? Like coming from this inherent place of doubt, it colors, I think, sometimes the relationship that people have. And I try to like change my own language because it is a mindset. If that's what they're saying, then that's what they're... Most people aren't making it up. It's not Dr. House where everyone's lying. That's another problematic kind
Dr Sameena Rahman (:Yeah. Yeah.
Dr Sameena Rahman (:Yeah. Totally.
Dr Sameena Rahman (:Yeah, exactly.
Chailee Moss (:my like default.
Dr Sameena Rahman (:And if you go into like just even the language we use with women versus men or women of color versus white women, I mean, just calling a black woman non-compliant, it's just like, she's just non-compliant because she won't take her medication versus like, let's try to understand what's happening, like why she maybe chose not to, or maybe you didn't ask her about, tell her about the side of it. There's so much into that, but it's really, it's patient blaming for their own, it's...
Chailee Moss (:Absolutely.
Chailee Moss (:Yeah? Yeah.
Chailee Moss (:That too, yeah, yeah.
Dr Sameena Rahman (:It's very negative, actually. don't like it. And it's hard to get yourself out of that when you've been trained in this system, right? Like, it's like not to say like, it's just patriarch, because matriarchy supports patriarchy, right? we women in this profession. Yeah, we are women in this profession. And we were trained under this manner. you know, we've all
Chailee Moss (:Right, yeah, it's all tangled.
Chailee Moss (:And I think back to interactions I've had with patients when I didn't know as much about these conditions and things that I probably missed. So I think about this stuff in relation to myself. And I'm no better, do better. I'm trying to do better going forward, but I know I have fallen short in this way.
Dr Sameena Rahman (:Yeah.
Dr Sameena Rahman (:Yeah.
Dr Sameena Rahman (:Yeah, I think we all have. I think it's a matter of, A, not knowing we didn't have the clinical knowledge because we didn't do the research and then B, not being reflective on it either.
Chailee Moss (:Right.
Chailee Moss (:Right, right. Agreed completely.
Dr Sameena Rahman (:Let's talk about sort of the stratification of, mean, because speaking as a woman of color, it seems like, know, majority of the patients that were surveyed and maybe you guys reached out to a lot, but it's hard to get like a full, you know, grapes, diverse population.
Chailee Moss (:Yeah, mean, yeah, it's not a broad sample. It's not as broad as it could be. And it's because our practice has a more narrow, some of the demographics are more narrow. I think that we tried to be very upfront about those limitations in the paper and say, like, this is really
hypothesis generating thing, we're trying to make this instrument, apply it to get everybody's attention about these numbers, but also say like these numbers aren't definitive, we really need to apply it in a much broader context. So that we have the like broad representation of lots of demographic groups. Because, you know, and I said, when I was writing this paper, I was like, this is a huge limitation. But if you think about it, it probably means if we have communities that are
Dr Sameena Rahman (:Yes.
Chailee Moss (:You know, especially so economically our population is less diverse. Like if you include people who are in more marginalized communities, my guess is these numbers are gonna go up. I don't think they're gonna go down. Like I don't think we're sensationalizing this. It is true that our patient population is not in good shape from a medical standpoint. They have the harder conditions. And so maybe it's more likely that they would experience some of these behaviors.
Dr Sameena Rahman (:yes.
Chailee Moss (:But I think also like the socioeconomic privilege piece of that is missing and we have to figure that out.
Dr Sameena Rahman (:Yeah, absolutely. But I think this is such an important first step in trying to really qualify and quantify what's happening to these patients and these experiences. And we were just talking offline that when I texted you last night, was like, my husband just told me that Reddit was exploding right now because someone posted it. And it was amazing, actually, right? was like thousands of women telling their same stories.
Chailee Moss (:Yeah.
Chailee Moss (:Yeah, smiles. I know.
Yeah.
Chailee Moss (:Yeah, and I try I try to do read it like a couple hours a week just as like community service answering OB GYN questions and like being part of the community because that is where so many people get their information about medical care and they're not as many qualified voices on there as there need to be. So come on down and jump on in because it is the water is a little choppy, but they need us there.
Dr Sameena Rahman (:Yeah.
Dr Sameena Rahman (:Yeah, that's what I told myself yesterday. was like, I'm going to be a little bit more involved in Reddit. So what from here, what is the next step you think for this?
Chailee Moss (:Yeah.
Chailee Moss (:Yeah, I mean, I think there two really like mandates that I take from this. One is we need to repeat the survey and validate it to show that it's like statistically a reasonable thing to use. And that way we can use it in lots of populations. also think it's made in such a way that it can be applied to different problems, Like endometriosis, pelvic pain. It can be used in different patient populations, different disease populations.
in different settings if we do the work to kind of validate it from a statistical standpoint. And then the other thing that we need to do is, you know, the main theme in the representative quotations in this paper was how there was a lack of training and understanding in the medical community. And so we need to educate people on global vaginal conditions so that they understand the differential doesn't stop, you know, the list of possibilities doesn't stop with a bacterial infection or a yeast infection.
There are so much more that can happen to the vulva and the vagina than those two things. And if we stop our training at those two things, then we are doing a disservice to the healthcare providers who then won't know how to handle the patients that come to them and to the patients who won't get the help they need.
Dr Sameena Rahman (:Absolutely.
Dr Sameena Rahman (:Absolutely. And I think that's why some of these patient advocacy groups are so important. I've had tight-lipped on the podcast before too, but just working with them and trying to do lectures for different residencies, that's really important. They're doing a lot of work. We're doing the work at Ishwish, trying to get more more clinicians trained in this and whatever way we can. We have to just get the information out so that...
Chailee Moss (:Absolutely.
Dr Sameena Rahman (:Again, this is if you graduated like me, like first 20 years ago, like you didn't know any of this because you know, this was not taught. so this, this, this data and this understanding and, you know, region based approach and a Stibula dinnian, all the terms that we throw around on this podcast are new. They're like in the last, you know, what 10 to 14 years probably, right.
Chailee Moss (:Yeah, yeah, no. Yep.
Chailee Moss (:Okay.
Chailee Moss (:Like we had a wonderful vulvar specialist that I really learned a lot from in my residency program. It wasn't like we had no training, but my time with her was extremely limited and I spent so much time on those life and death things, which are really important to know in training. The obstetrics and gynecologic oncology parts of OBGYN residency are robust because those are the places where they need all hands on deck to care for people in the hospital and it teaches you
sick and not sick. It doesn't teach the bread and butter are the things that affect most people.
Dr Sameena Rahman (:Absolutely. And so I think, you know, those of us that are associated or close to academics, we have to kind of get that information out there and allow students to rotate with us and residents. And I know you guys do that as well. I mean.
Chailee Moss (:Yes, we do. Anyone can come hang out with us at once. Come on down.
Dr Sameena Rahman (:So yeah, come on now, exactly. And so, you know, I think so that, so the next steps are that and then just continue to educate, right.
Chailee Moss (:Yes, agree completely.
Dr Sameena Rahman (:And the other interesting thing in the study was how many patients almost decided to give up on their journey, right?
Chailee Moss (:Yes. And again, that's a thing where I feel like the skew and we wrote about this in the paper, like in my heart, I believe that that I think it's 56 or 54 % of people who said they almost gave up on care would be a lot higher if we could start at the beginning of people's journeys and follow them prospectively with global bad health conditions. Cause I think we lost people who in fact did give up care. think it's 56 % of people tell you they were thinking about giving up care.
your number's higher because the people who did give up care are not represented in your sample. So I think that number's higher. yeah, so it speaks to the fact that our education and our sensitivity to this is so important because we're losing people who really need care. And it may have profound effects on their life. There was a quote by a patient in here.
Dr Sameena Rahman (:Absolutely.
Chailee Moss (:who talks about how they had given up carriers before and lost so much of what they felt like should have been part of their life because of it. Didn't pursue a long-term relationship, didn't pursue having kids and a family in the way that they wanted because they just thought this was not something they could get help.
Dr Sameena Rahman (:Yeah, absolutely. I mean, I think, I think it, it really colors their life. And I feel like, you know, people, don't reach certain potentials and goals that they want in life or even quality of life is just ruined for so many people. And so it's so important for, you know, us to really be on top of this. And I, and I find like a lot of times, like if I'll have someone that has say like, you know, know, hypertonic pelvic floor and the form of like vaginismus where they've never had any penetration for years and years and years, and many times they'll come to me and they're
Chailee Moss (:Mm-hmm.
Dr Sameena Rahman (:they're ready for treatment, but they're not ready to do the steps for the treatment. You like you have to do the PT, you got to do the dilators, you got to do the boat, you to do all the things. And it's time consuming, right? Like some of these people are high executives, they're working, they're in school, they're in med school, have a lot of, you know, medical people that do this and where do you make time for? So then years and years just pass. And at some point you're just involved that maybe you're not going to have penetration or, you know, have penetrated, you know? And so...
Chailee Moss (:Yeah.
Chailee Moss (:Yeah.
Chailee Moss (:Mm-hmm.
Chailee Moss (:Yeah, yeah, or you'll go a different route in terms of making your family. I yeah, but you know, those same folks, if we could have caught them earlier, because we know things like if you catch out less before they're having scarring, then they're not going to have the pelvic floor dysfunction. And they're not going to have all these other downstream effects. Then you save people all the work that they'll then have to do at the back end if you can catch them early. And so we just, you know, have to do better.
Dr Sameena Rahman (:Yes.
Dr Sameena Rahman (:Great.
Yes.
Dr Sameena Rahman (:Right, so this is so true. So it's really about early diagnosis, early intervention and finding the right people. we always talk about, so what do you tell people that ask you like, you how can I find someone to help me or what do I do to advocate for myself? Right, because that's one of my biggest things is like really learning how to advocate for yourself. And you're here and you think that you're being dismissed. Like, what do you tell patients about that? Cause we've both been in the scenario, I think.
Chailee Moss (:Yeah.
Chailee Moss (:I mean, I think, yeah, I do this, I have like a standard thing I do on Reddit a lot because those patients aren't necessarily patients that can come to see me or trap, they may be out of the country. And so I refer people to a couple of kind of standard resources. I usually say, hey, the book, When Sex Hurts is something that I read, you know, before I even knew Andrew, well, because I thought it was great for patients or for clinicians. So I think that's a great recommendation, whether you're a doctor treating these patients or you're a patient who needs help.
Dr Sameena Rahman (:Yeah. Yeah.
Dr Sameena Rahman (:Yes, me too.
Yeah.
Chailee Moss (:to give everybody sort of a shared mental map of the anatomy and the possibilities, at least as we understand them now. And those proceeds go to the National Volvodinia Association. So I think it's just like a win-win. And then the National Volvodinia Association, TightLift, are great organizations where they have resources to find a clinician near you. And then Ishwish, and our website has some good resources too, volvodinia.com.
Dr Sameena Rahman (:Right.
Chailee Moss (:Yeah, that's great resources.
Dr Sameena Rahman (:All right, awesome. Well, thank you, Kylie, for coming on last minute. I was texting her last night. like, let's just get on there and talk about it. Well, you can get the information out there so people can read about it and feel validated. the other thing is I feel like lot of patients are just pissed off too, right? They're just so angry about it because they've been traumatized so much by the medical system. That is really hard for them to like...
Chailee Moss (:Great. Let's do it. It's fresh. Let's do it. Yeah.
Chailee Moss (:Yeah.
Dr Sameena Rahman (:Like I even noticed sometimes they cut like sometimes a first visit is very like, you know, triggering for them, right? Because they're all there's that they're holding.
Chailee Moss (:Yeah.
I I see that a lot on Reddit. I see it a lot in online circles, but I don't think clinicians get it because they're not in those communities to really understand the simmering rage around these kinds of things. And so I feel like this is in some small way our way of saying, you may not realize that you're unintentionally causing this harm, but it is being caused. And we really need to be aware of how our language and our attention to patients is being perceived.
Dr Sameena Rahman (:Well, I think that's a great way to end it. all this is going to be in the show notes. The article and its information is going to be in the show notes as well. So you guys should check it out and read the article. It's amazing that we have some validated information that we all knew, but unfortunately, it's truer than we imagined.
Chailee Moss (:Yeah, yeah, more work to do, but thank you so much for bringing attention to the article.
Dr Sameena Rahman (:Absolutely. Thank you, Kylie. I appreciate you being here. You guys will see in the show notes where you can get in touch with her if you need to see her or, you know, compliment her for her amazing work, whatever you want to do. I'm Dr. Smeetaraman, Gyno Girl. Thanks for coming to another episode of Gyno Girl Presents Sex, Drugs, and Hormones. Remember, I'm here to educate so you could advocate for yourself. Please join me on another episode in another week. Yay.
Chailee Moss (:Thanks.
