In this episode I dive deep into the often misunderstood and stigmatized world of women's sexual health and a condition called congenital neuroproliferative vestibulodynia.

Joining us is Erin Young, a brave voice who has navigated the murky waters of seeking treatment for her condition in a society where discussing female sexuality is still taboo.

Together, we'll explore the significant challenges that many face in getting proper diagnoses and care, ranging from societal perceptions to the medical community's lack of comprehensive training in female sexual health. 

Erin is a fierce advocate and even though at times she questioned her self, she always knew deep down she wasn’t getting the right care and kept searching and researching for someone that could help her. Unfortunately, some women end up giving up because of the fact that so many health professionals are not trained in sexual medicine. 

Let's change the conversation and provide the support that so many deserve. 

Are there any topics you would like me to discuss? Feel free to DM me on my Instagram account. 

Highlights:

-The challenges in women's sexual health highlight the lack of proper medical training and research.

- The importance of patient advocacy, empowerment, and the necessity for persistent care-seeking is emphasized throughout the episode.

- Success stories and progress in the medical understanding of sexual medicine are discussed, suggesting hope for improved treatments and awareness.

-Understanding when surgery may be the best option for vestibulodynia

-How online support groups can be a huge help when navigating your diagnosis. 

Resources:

ISSWSH

Resources from Erin Young

Get in Touch with Dr. Rahman:

Practice

GynoGirl Website

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Youtube

Hey, y'all. It's doctor Samina Rahman, Gyno girl. I'm a board certified gynecologist, a clinical assistant professor of Ob GYN at Northwestern Feinberg School of Medicine, and owner of a private practice for almost a decade that specializes in menopause and sexual medicine. I'm a south asian american muslim woman who is here to empower, educate, and help you advocate for health issues that have been stigmatized, shamed, and perhaps even prevented you from living your best life. I'm better than your best girlfriend and more open than most of your doctors. I'm here to educate so you can advocate. Welcome to gyno girl presents sex, drugs, and hormones. Let's go.

Hey, guys. Oh, my God. I just recorded with one of my patients who suffered for ten years with pain at the introitus, at the opening of the vagina, at the vestibule, the vulvar vestibule, this piece of tissue that causes so much havoc to so many of my patients. And she was born with this condition where she has too many nerve endings at the level of the vestibule, and it's called congenital neuroproliferative vestibulodynia. Say that ten times for me, in general, neuroproliferative vestibulodynia is a case where, you know, and I'm going to talk about this in my next recording about different types of vestibular pain. And she talks about her journey and how it took ten years to find someone that would agree to do surgery for her, or even to find the diagnosis, actually. And it's a very compelling story, and again, highlights just how much so many women in our society, or so many books, vagina and vulva owners suffer until they can't take it anymore. They finally find the answer they need, and it's like, yes.

So please tune in to hear her talk about her journey, and then you can tune in after the week later just to hear more about vestibular pain. All right, guys. Can't wait for you guys to hear it. Hi, everyone. Welcome to another edition of Gyno Girl Presents, sex, drugs, and hormones. I'm excited to have another patient here today talk to me about their journey and to talk to you guys about advocacy and how they got to the point they were to get the help they needed. We're talking about a particularly special condition, which I haven't spoken of yet. We've talked a lot about sexual pain and pelvic floor.

Today we're going to specifically talk about the vulvar vestibule and issues around introidal pain with sex. That means when initial penetration happens, it either can't happen or is very painful when it does happen. And this is penis to vagina penetration or penetration of any sexual toys, or penetration of speculum or a digital anything like that. Tampons in the works. And so what we're going to discuss is, first of all, the Volvoir vestibule. Let's review a little bit of anatomy. You know, everyone says vagina a lot, and when they talk about down there, but specifically, what we're talking about is the external part of your female genitalia, which is the vulva as a whole. That's what it's called.

And then you have your outer lips, which is the labia majora, and your inner lips, which is the labia minor. And inside of that, right before you get to the entrance of the vagina, there's an area between the inner labia minora and the remnant of your hymen. It extends from the urethra down to the perineum. And it's a little circular piece of tissue, very tiny amount of tissue, to cause such a huge amount of distress. And it's called a vulvar vestibule. So just like a vestibule opens into a room, this vestibule opens into your vagina. And it actually causes a lot of distress for a lot of patients around the world. There are different reasons that you can get vestibulodynia, and we'll have a whole podcast on that.

But we're going to talk about when you're born with a condition, when you're born with a condition where you have too many nerve endings at this area, and we call that congenital neuroproliferative vestibulodynia. So I'm super excited to introduce my patient, Erin Young. She is an amazing advocate for women's health, as well as trying to get the best help you need for your sexual concerns. And so first I'm going to let her introduce herself, and then we're going to talk about when she first noticed that she had a problem. And then we're going to really delve deeply into how she got to this solution that she needs. And even though it's an evolution in progress, still. Thanks, Erin. Hey, Erin, how are you?

Hi. I'm good. How are you?

Good, good. I'm so excited that you are joining us. I know it's very hard a lot of times for patients to come on. Obviously, you agreed to this, you know, HIPAA compliance and all that stuff. We did sign off on that. But, you know, I know that you're a fierce advocate that you love talking about or like you want to help other women not suffer the way you did, basically. And so tell us a little bit about yourself and then tell us when you knew you had an issue or, and how that, and we can talk about how that evolved.

So, yes, my name is Erin, I'm 29 and working on my PhD right now and I think kind of what comes along with that is I love researching things, I love looking up topics and like finding my own, like forming my own opinion on things. And I have noticed that throughout my journey that's helped, but it's also hindered me in a sense because a lot of providers will just kind of write someone off, right, if they bring up a topic or a condition that they researched on their own. And I don't know, like, I don't know why that happens, you know, like, I don't know, like I want a.

Patient, at least a couple of knowledge. It's like such an easy conversation, then I'm like, yes, exactly, that's what we're going to do. Or, you know, I mean it's always a joint decision making process, right? So, I mean, you know, when you have the preemptive knowledge, which is the whole point of this podcast and everything that we do is really just to build awareness so that patients can take that piece of knowledge with them and go, you know, to whoever they want and see if that, if they can get the help they need. But yeah, I don't know either.

I mean, it's just interesting, right? Because I like, you know what I mean? Like I've definitely been to plenty of, you know, doctors in the past where I've like mentioned something like, hey, I looked online and I think I might, you know, have this, whatever and you know, a lot of the times it's met with like resistance, you know, and I think, I don't know if anything throughout this process, like, I've learned how much, like, you know, your own body the best.

Absolutely.

Like, I had pain. The first time I noticed the pain was when I got my first period, when I was twelve and I tried to use a tampon and it just like didn't work. You know, I've talked to friends and people who have said like when they got their first period they struggled to maybe use a tampon. Like they couldn't figure it out for a couple years. But I really felt like even then something wasn't making sense, you know, it just, it didn't work. You know, and, like, unfortunately, like, I feel like a lot of conditions like that just aren't talked about, you know?

So tampon one on one instruction for people.

Yeah.

I think that we don't even get a clear sense of our anatomy until, you know, we have to utilize it. And so. And, you know, it's such a taboo area that we don't discuss that people don't even understand the difference between the outer parts of the genitalia and the inner parts of the genitalia, and that's all. Just not the vagina down there and. And everything. And I think we. That's important. That's why I always try to name the parts, even when people are like, why are you saying vagina? Or Bella so much so, yeah.

Yeah, I think, like, that's. You know what I mean? Because it's like, even I'm very close with my mom. I have a good relationship with my mom, you know? But I do wonder sometimes, like, if it wasn't something, you know, like, sexual health related. Right. Like, is that. Would I have gotten more, you know, support earlier on? Like, I think that. I'm sure, you know, like, I think saying, I don't know how to use a tampon, like, to your point. Yeah, there's not tampon 101, you know, like, we don't.

We don't teach. I don't know. I just feel like there's not a lot of help or support, and even friends who don't have this issue, like I said, like, I'll talk to them, and, you know, they had to figure it out over the course of a few years, and it's kind of sad to me, but that was when I noticed the first issue, and then I just kind of ignored it, honestly, for, like, six years. Yeah, I, like, ignored it for, like, six years. And then I tried to have penetrative sex for the first time when I was 19, and it was like, it didn't work, you know, like, it was horrifically painful, and it didn't. I couldn't even. You know, I couldn't have penetration, but even just attempting was horrible, horrible pain.

Right. Did you first start with, like, you know, just like a finger, or was it sort of like you tried straight on penetration? Was. Was the fingering happening at all, or was it.

Yeah, I mean, you know, fingering was. Has always been kind of fine for me.

I think you can direct your finger. That's why, like, I feel like. Yeah, you know, you can bypass the vestibule if you have to. Exactly.

Yeah. And I think that's what's kind of interesting. So when I tried to have sex, I was like, something is, like, not right. Like, this is not, you know? And even then, like, people try to write it off, like, oh. Like, my first time was painful, too, and I'm like, this is not normal. This isn't pain. You know?

You knew it, right? You're like, this is my body. I know what's going on. I always tell patients that, yeah, I mean, you know your body better than anyone else, so if you're. If you're suggesting or saying something is not right, then we have to listen to that and try to figure it out.

Yeah. And so I had gone to, um. I'm trying to remember, honestly, I been referred to a gynecologist who I went to, and I remember it was so strange because the first thing she asked me when I experienced pain was she asked me if I was a virgin. And I didn't. Like, I felt so uncomfortable. I was, like, 19. I was, like, pretty young, you know, and I was just like, I think I lied and I said yes because I was, like, embarrassed because it's, like, acted like it wasn't normal that I was.

Yeah.

There wasn't a other reason why I was having that type of pain.

Right, right. You know, a lot of times, you know, in medicine, we don't even teach it well enough for, for providers to know it. So I think we have two problems. You know, one is the ability to talk about it to the provider, and the other is that the providers, a lot of times, are not knowledgeable. The doctors, the nurse practitioners, the pas, the pelvic floor therapists, a lot of them. And then, of course, you can find the ones that are, but, yeah.

And I think I am sympathetic to the fact that I don't expect everyone, someone to have every single answer for me, you know? But I think it's like, the. The problem solving and the compassion and the empathy and, like, recognizing that someone is actually experiencing the pain. They're saying that is, like, the driving factor for me and deciding if I want to keep working with that provider, you know?

Yeah, absolutely.

And so I kind of, like, bounced around. You know, I got, like, so many different diagnoses. Like, I think at first it was vaginismus. Like, I tried pelvic floor therapy. I think I'd gone to, like, seven different pelvic floor physical therapists, varying degrees of success. There was one in particular I had a really, really horrible experience with.

Yeah.

And it's like, like, shocking. Like, when I think about it now. But so I wasn't making progress with her, right. Because now I realize I had vestibulodynia, and I needed, you know, I needed a surgery for it. Like, that's what I need to really treat it effectively. So I was making limited progress in physical therapy, and I think that the therapist that I was working with was getting, like, frustrated that she didn't know why I wasn't making progress. And at the end of one of the sessions, she, like, sat down with me, and she was like, I think that you have. It's, like, so ridiculous.

She was like, I think you have some, like, emotional trauma that you're not admitting to me. And was like, I think that maybe you've been, like, like, sexually assaulted or, like, something when you were younger, and you're not, like, telling me about that and was like, you're not gonna heal until you work through that. And obviously, I'm sure you're right. There's plenty of women who have had those experiences, but, like, I hadn't, you know, and so it was really, really frustrating to have someone try and, like, project this thing on me and say that they're not gonna work with me if I don't go to a trauma support group and I don't work through this and I'm not gonna heal.

Yes.

Like, she gave me a flyer for some, like, trauma support group, and I'm, you know, like I said, it's. I understand. It's a fine line.

Right?

Like, there is, you know, very much a psychological component to this condition for me, but that's not inhibiting me from healing if I know that I, like, I need this surgery, you know? And so it was just. It was very crazy. And, like, I'll, like, speak up, right. If something like, because I've been through this so much. Like, I threw a fit. Like, I called the owner of the physical therapy practice, and I was like, you know, she's licensed to practice in physical therapy, not in, you know, mental health. Like, I think she trying to practice outside of the scope of what she was licensed to practice.

Like.

Right. I think this is inappropriate. Like, I went off, you know, and.

It'S like, I mean, this is the history of women's health, right?

Yeah.

It's in your head. It's in your head. This is not real diseases. And, of course, there's a psychological component to everything, and women do get depressed and anxious when they are start. You start having a procedure.

And.

Which came first, the chicken or the egg? Sometimes it's the chicken. Sometimes it's the egg, but, like, the reality is, like, this is the history of women's healthcare that, you know, this, you know, this is hysteria. You know, came even from the fact that it was, you know, a condition that was more mental than physical. And we now know there's a combination component again, of course. But that must have felt awful because, I mean, most women know when they've been assaulted for the most part. I mean, I'm sure some probably, like, push it down so far that, you know, they might not remember at five years old until someone did something, you know, but I think the majority of the people will remember, and they just, you know, they either acknowledge it and get treated or not. And I think that going to a bunch of physical therapists for a condition like vaginismus, you probably had an element of vaginismus because it comes up secondarily when people have pain. So there's primary vaginismus and secondary vaginismus.

I talked about previous episode, and so I think once they treated you and desensitized you to the act of maybe you had a little bit. But I think the core component of it obviously hasn't been fully addressed. And that was a big frustration for you.

Yeah, definitely. And I think, like, you know, I did have one physical therapist in the past who helped me, like, distinguish, like, the pain at the entrance versus, like, the deeper muscle pain. So, like, that was helpful. But you know what I mean? Like, I kept getting, like, vague diagnoses, right? Like, I was, like, told, oh, you have vulvodynia. And I'm like, okay, but what, like, what's. I don't understand, like, I need more.

That fact that, you know, you, you kept wanting more information and you wanted, you know, some real answers because some, some patients give up or some patients just accept what people tell them, you know, as true, and they don't explore it further, and they're stuck in that rut for years and years.

Yeah. And, like, I remember seeing one gynecologist as well. Like, I researched, like, vaginal valium. And, like, I was kind of curious to try that. And I asked him, like, you know, point blank. I was like, I have. I know I have this pain. I have bulbadenia.

Like, do you think this would help? And he just looked at me and he was like, I don't prescribe that. I don't. I don't do that. And, like, it very much had kind of, like, a condescending tone, you know, where, like, almost like, he thought I was like, trying to seek out, like, drug seeking behavior or something, and I'm like, I'm just trying to treat this pain that I have, you know? And it's like, it was just so upsetting, that's all.

You know, it's gaslighting. Right. It's like you being told, you know, and so. And being redirected to a direction that isn't appropriate for your care. And so I'm sorry that you went through that, honestly. It's just. And it's a very similar. I hear a story almost daily from patients when they tell me what they've been through, but.

And so you got all. So you were doing the physical therapy and going down that route of trying to treat the muscles, and then at some point, you're like, this is not just the muscles, right. And you had a therapist that kind of agreed, and then where did you go from there?

Yeah, so I did. Like, I remember being. I think it was, like, towards the end of college, so still, you know, several years ago, I remember just reaching a point where I felt like I needed to go somewhere more specialized, and I was, like, very much experiencing, like, you know, insurance difficulties. Like, it's. It's unfortunate, right, that I feel like insurance companies don't care about women's sexual health at all, you know? And, like, I think that's also challenging because it's like, if insurance isn't even validating, this is, like, something like, how can we expect other people to think that it's important in real pain, you know?

Or they give it a psych code, which is called, like, an f code in code. Billing and coding and medical billing. And so if you have a. They don't usually reimburse anything for s code like that. Yeah, it's interesting, especially if you're not in that. That's why a lot of psychologists, psychiatrists, you know, opt out of certain insurances or don't take them, I think.

Yeah, yeah. And so I, like, you know what I mean? There was, like, multiple periods over the last, like, ten years, right, where I just kind of had to, like, be like, I can't. I can't afford to, like, try and treat this. Like it's like I'm getting nowhere. Like, no one's helping me. No one's, like, validating the pain, and then I'm just spending all this money, you know? And so eventually, I did go to, like, a specialized clinic, and that was where I finally. I think this was about a little over a year ago, I finally got the diagnosis for congenital neuroproliferative, the sibulodynia. But even then, I had a little.

I had concerns about the clinic that I was at because they had recommended a partial vestibulectomy. And then, like I mentioned in the beginning, I love, you know, researching things kind of to a fault sometimes. I spent, like, hours, like, looking through, like, there was, like, a Facebook support group for that surgery that I found. And I was, like, reading through, like, endless posts and, like, at least anecdotally, I don't know what the research says, but at least anecdotally, the women that I was, you know, talking to and, like, reading accounts for, or they were not really, like, recommending partials, and I was like, okay, well, I feel like I should get a full vestibulectomy then. Like, based on what I'm reading, that that's what makes sense, you know? So that's obviously when I found you. And then I felt so relieved. Yes.

Yeah. And I think that's the. What was traditionally always done were these partials, because, you know, which, if the vestibule is like a circle, right? And we talk about the different clocks of a circle, the posterior, or if you think about four, five, 607:00, that bottom part is usually thought to be really associated with more muscle pain than anything else. So when you treat the muscles, that type of vestibular pain should go away. So that if you had provoked vestibulodynia due to pelvic floor hypertensity, that would go away with pelvic floor therapy or botox or something like that. And then it used to be that. That was the part that was removed. I have a lot of patients that are, like, you know, 1020 years out, and they would only have that partial removed.

And then they've just figured out how to get past. And I think the majority of the time, the partial part was not. Was removed only because when you look anteriorly. So at 1211, at 01:00 that's very close to your urethra from the hole that you pee out of. People have always been cautious about trying to remove tissue around the urethra. I think for the majority of time, that's what was happening, is that most of the pain was like, okay, if we remove this part, and the pain would go away. And until the research evolved more and understanding that there's nerve endings that are more dense here and some factors that are more dense and mast cells and other things, inflammatory factors that are seen in a whole vestibule, removal of the vestibule, then that's when it became more. Removing the vestibule has more success rates.

And so I think that's kind of how it evolved. And if you're not trained to remove the whole vestibule, then your comfort level is just removing or doing a partial. Right. So you might have met someone who wouldn't be comfortable removing the entire vestibule or in his or her training, didn't learn that. So I think that's kind of like, maybe the evolution potentially about what that.

Yeah. And I think it's. It's just, like, unfortunate, right. That it's like I've had to go to such great lengths to, like, draw those, like, draw certain conclusions on my own, you know? Like, I know that that's, like, the case for any type of condition, right? Like, you have to weigh the costs and the benefits of certain treatments for yourself, you know? But I think especially with this condition, like, the amount of research that I've had to do on my own, and, like, it's kind of insane, you know? And, like, even my primary gynecologist, I really like, like, I've gone to her for years. I really like her. And, you know, so often when I would go see her, I would suggest treatments, you know, and she would be like, oh, let me research it and get back to you. You know, and she was always pretty flexible with prescribing me, you know, treatments for the, for vulvodynia. But it's just crazy how much, like, the onus kind of fell on me throughout this whole process.

Right.

And that, I think, speaks to the lack of research in women's sexual health specifically. Right. Like, that's one big women's health in general. I mean, I think the. I think it was 1993 before women were actually encouraged or allowed to be in medical studies at all. So, you know, before that, it was like, women are smaller men and let's just extrapolate data kind of thing. But when it comes to women's sexual health or, you know, hormonal health, that kind of stuff is. Is really even far between for to understand that at all.

So I think that's been a big inhibitor. And then again, learning the information, like, where do you go to loan it? For those of us who did the self exploration, where, you know, and that's exactly how I came to sex medicine ten years ago, was that I had a patient that I couldn't figure out what to do with. And I went to the Internet, and so I started doing my own research, and I found the International Society for the Study of Women's Sexual Health, which is sort of the premier sexual medicine organization. And that's where I learned. And so then I mentored with different amazing doctors like doctor Erwin Goldstein, who's kind of like the godfather of female sexual medicine, and learned it. And then, you know, learned the procedures and, you know, have now been. The more patients you see, the more you learn from them, too. Right? I think it's an evolution in process, but it's unfortunate because this is how a lot of the doctors or therapists or whoever that are in sexual medicine kind of come to it, because you don't learn it.

Actually, I'm giving a medical school lecture on Monday about female sexual medicine, and I have 50 minutes to talk about it, but I really want to take home, like, some points about it because I think this might be their only exposure to it before they go on to whatever next field that they have. And so this is. I think it's a trying issue, but it's getting better. And I think the field has evolved greatly in the last ten years. We've learned a lot more than what we knew back in the day. We used to just put lidocaine on the vestibule or vaginal valium, and then pelvic floor came into it. You know, a lot people would use different neuropathic pain medications, try to, when the brain sends the signal to your peripheral nerves, you can calm those nerves down potentially. But we know at the end of the day, none of that worked as much as removing the nerve endings altogether.

I think that it's been a great time, and even in the last five years, where the process of care has been more of a regional based approach to any kind of sexual pain when it comes to looking at the end organs, like the vestibule versus the peripheral nerves in the pelvic floor, looking at the spine and see how much that's involved, because some of the nerves originate from the spine, and then the signals that the brain sends to the spine that eventually gets the peripheral nerves and the end nerves. So, I mean, it's been a process, and I think that it's gotten much better, but there are so many patients like yourself that through the years have just suffered as a result of either the lack of funding, the lack of ability to get to because of, you know, insurance coverage, or. And the lack of finding doctors or surgeons around the country that can even do it.

Yeah. And I think, too, there's, like, a point where you, like, start to question yourself, right? Like, after so many people tell you, like, you know, I don't know what this is. Or, like, you know, just relax. Like, if you find the right partner, like, you won't have pain anymore, you know, and it's like.

Right?

Yeah. Like, yeah. I mean, yeah. Like the. Yeah. I had a physical therapist say the first one I ever went to suggested dilating after drinking a glass of wine, and it's like, that's not. You know what I mean? Like, I feel like that's, like, the running joke, but I actually heard it, you know?

No, because. Say it. I mean, I have patients, every patient, probably. I've never not heard that from a patient. Like, if they. If I'm not the first person or the second person they've seen, at some point they're like, yeah, well, the last person I said just told me to have some wine and relax or just keep at it. It'll. It'll.

It'll get better, you know?

Yeah. And I think it's crazy, too. Like, I remember, like, I've been to so many specialists, right? Like, even specialists who are supposed to be sexual medicine specialists, and, like, no one ever, like, examined my clitoris until I came to you, and then you had said, oh, you have, you know, clitoral adhesions. Like, you know what I mean? It's, like, crazy where it's like, how are people even that are specializing in sexual abduction not even looking, like, examining, like, the clitoris or, like, the. You know, like, I just don't understand it. I don't know.

Yeah. And there's no. I mean, so in the field of urology, there's a number of sexual medicine fellowships where you can actually go and see patients with it. Right. If you graduate from residency and never see a patient with a sexual concern, you know, how are you ever going to treat it? I mean, I think I saw maybe a handful of vaginismus patients who were just told to go to physical therapy, and that was it. You know? And this was, like, 20 years ago, so it's much different, but I think it's still a problem. Like, I mean, I have patients. I have students that come into my office and they're like, wow, I've never seen this condition.

Or, you know, they're all. They get surprised when I check a vestibule and it's. It's zero out of ten pain. So it's like, oh, it's not always painful because after a while, they think the vestibule should always be painful because I see all my patients in pain with the Q tip test, but I think the majority of students or residents don't even get a chance to see it as much, and that's where the advocacy work comes in. Right. And ish wish is kind of pushing it. I know. Tight lipped, you know, the tight lipped organization.

Yes.

Yeah, yeah.

So they're pushing, you know, trying to get at least within the training of Ob gyn. They're actually starting modules in different states to see if they can get that at least a module in there, you know, because otherwise, you know, residents are graduating with very little knowledge. And then these are the doctors that you're going to see. Right.

Yeah, I think about that, where it's like sometimes I can't even, like, sometimes I can't even fault the physicians.

Right.

For the lack of knowledge because it's like, there's not even training on it. And it just is so interesting because I wonder how much of that is rooted in just, like, how society views, like, women's sexuality. I love you. Follow doctor Lori Mintz on Instagram. I, like, love all of her posts.

Yeah, she's amazing. I know her. I met her at the last conference I was at. She's awesome.

Yeah. Like, she posted something the other day where she was like, is some statistic. Like, I might be misquoting it, but I swear it was like, 75% of women don't even orgasm from vaginal penetration, you know?

Yes.

And so it's like, it's interesting, right, that it's like, that's always how things are portrayed in, like, movies and, like, society and everything. Like. Like, that's the only means to get pleasure, you know? So I kind of challenge people anyway, aside from having this condition of, like, you know, I can still feel pleasure. Like, I can still orgasm. Like, that's not like. Like, do I want the surgery and do I want to be able to have sex? Obviously. Absolutely.

Right.

But, like, it's not. Penetration is not everything. And it's like, I just wonder if. If society was a little bit different, if there would have been, you know, more training for physicians, like, medical students anyway, in this, you know?

Yeah, no, it's probably true. It's bad here. And I just came back from, like, an international society meeting and debate. It's really bad around the world. You know, I think that there are, like, pockets of areas where they're doing a lot more research, but there's just an underlying tone when it comes to female sex. And I hate to say it, but, you know, it's like the patriarchal view of how women should or should not, and that's why there's an orgasm gap, and that's why we have so many issues when it comes to medical research. And, you know, how men can get Viagra at the drop of a hat to help their issues. But we have two FDA approved medications for female sexual dysfunction when it comes to low desire.

You know, and they have all the other ones. And there's so much testosterone for men. We have no FDA approved female testosterone. So, I mean, it just. There's an underlying. And even though, you know, we've had great studies and the FDA could have approved so many times testosterone for women, the only country in the world that ever approved it for women is Australia. So we have one country in the whole world that has a female government approved testosterone for women that's titrated to women. And so I think that it's just.

It's a shame, you know, it's a shame because women continue to suffer. I was at the menopause conference recently, and Sue Dominus had written an article about women being misled about menopause that went viral in the New York Times. And she kind of talked about how a lot of what she. I can't remember what she said exactly, who had said this, but one of the things that inspired her was that, like, as a society, we've accepted the suffering of women. Like, it was just accepted, even as women, we accept suffering. Right. We, like, okay, period. Pain, I have to live with it.

Sexual pain, I have to live with it. You know, pregnancy related issues, I have to live with it. But it's just the underlying tone and how the world has been. And so I feel like, you know, those of us speaking out, you know, can hopefully help change that. So that I have two daughters, I hope that they don't have to experience things the way that we have. I think, you know, and I do think the narrative is changing around a lot of these things. It's just slow. Yeah.

It's just like, I wish I could go back to every doctor I've ever seen who said it wasn't real or it was psychological, or I needed to get over it and be like, no, there's literally excess nerve endings.

You were born with this condition?

Yeah. It's validating. It's validating knowing that I feel a lot more empowered, you know, knowing that I wasn't, like, I knew I wasn't making things up. But when so many people tell you that you are, you kind of start to believe it, you know?

Of course. Yeah. It's unfortunate. Well, I mean, Erin, if you had one thing to tell a patient that's listening that might have sexual pain or might have some sort of issue around sex in your journey, because you're obviously someone that's really well versed and you're very educated and you're very smart, and you read the literature and you're out there researching, and some people might not have that, you know, chance to do it or, you know, might not have that desire that you did. Like, if you could give them a piece of advice, you know, what would you tell them and how would you tell them to approach it?

Yeah, I would say, like, just don't. Don't give up. Right. Like, if you go to a provider that is not giving you, like, compassion or empathy or, you know, you're not getting, like, it's not working. Like, just go find another one. Like, even if other people think that you're on this, like, fruitless attempt to, like, find an answer to something, like. Like, I found an answer. You know, it took ten years, but I found an answer.

And so I just really, really encourage people with these issues to not give up and to not, like, let everyone around them saying that it's not real or saying to stop. Like, just don't listen to that. Like, keep going.

Yeah. Okay, great. Well, thank you so much. You know, I'm really sorry that you went through what you did, but I'm so thankful for you to come on the show and talk about your experience and help encourage other women out there who may be in the same boat that you are and, you know, who don't know how to advocate for themselves. Again, there's tight lipped organization, which is. I spoke to the founder of it a few weeks ago, and so there's going to be a podcast on that. So we know about that. We know about some Facebook groups.

Right? Do you know the names of it?

The ones I can actually. That. Well, I can share with you. I have a whole slide deck of resources that I put together for my public pain support group that put it in this cute PowerPoint slide.

You did? Oh, that sounds cute, but I can.

All share it with you. Yeah, I shared it with Grace as well, so I'll share with you. But, yeah, I can give you the names of the. The Facebook groups. I can't think of them off the top of my head. I think one is just called, like, vestibulectomy support group.

Yeah. And there's some about just vulvar pain support groups. There's obviously. There's a PGAD support group. I did an episode on that a few weeks ago. And if you go to the International Society for the Study of Women's sexual www. Dot isswish isswsh.org, there's information there where hopefully you can find one of the either docs or, you know, therapists, mid level providers, whatever on the show, I mean, in the list that can hopefully help navigate your journey. And then we have a patient facing website called procella prosayla.

And that's where they explain a lot of the conditions that are commonly dealt with in sexual medicine. So there's a segment on vestibule vestibulodynia, congenital vestibulodynia, congenital neuroproliferative vestibulodynia, acquired neuroproliferative vestibulodynia, pelvic floor dysfunction, the works. So, you know, it's www. Dot procella prosayla.com. And it'll be in the show notes.

Yeah, I've looked at that website before. I think it's really, really helpful. I like how it's explained and everything's explained in very simple terms, but it's still like scientific. So I think it's easy to understand.

Great.

All right.

Well, great. Well, thank you, Erin. Thanks for telling us about your journey. I'm going to do a segment just on vestibular pain in the coming weeks, so to get more into it. And until then, you know, if any, we're here to educate so you can advocate for yourself. And thank you for joining the podcast today and I will see you guys next week.

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