Do you ever wish there were more resources and support for managing your sexual health condition?

Well, that's exactly what our latest guest, Jaclyn Lanthier, provides. Jaclyn is a dedicated advocate and educational resource for individuals with lichen sclerosus, and she's here to share her wealth of knowledge and personal journey.

Jaclyn offers a free 100+ page ebook supported by over 40 peer-reviewed journal articles that are constantly updated. Covering topics from sexual health to mental health and building a support team, her work is an essential resource for those managing lichen sclerosus.

Jaclyn is also a powerhouse for the Lichen Sclerosus Support Network, producing a variety of content, ranging from blogs and YouTube videos to webinars and virtual meetups. She conducts in-person support groups, webinars, and even educates healthcare providers, bridging critical gaps in patient support and professional understanding.

Transforming her own challenging experiences into advocacy, Jaclyn emphasizes the importance of tools for condition management, mental health prioritization, and finding the right healthcare providers. Her story and advice are especially poignant, given her past struggles with misdiagnoses and the healthcare system, a common theme in our discussions on medical gaslighting and the need for compassion in care.

Jaclyn's initiative, The Lost Labia Chronicles, exemplifies her dedication to education. Through blogs, videos, speaking events, and multiple media forms, she ensures everyone can access and understand this crucial information.

Highlights:

• Jaclyn's Journey with lichen sclerosus: Facing years of misdiagnoses and trialing through inadequate care, Jaclyn transforms her personal hardships into robust advocacy efforts.
• Tackling Health Anxiety: Hear Jaclyn's advice for avoiding overwhelming research, focusing on treatment and mental health, and managing symptoms with confidence.
• Empowerment through Education: Jaclyn stresses the necessity of educating oneself about conditions like lichen sclerosus and finding the right healthcare providers equipped to offer proper care.
• The Lost Labia Chronicles: Gain insight into this initiative, demonstrating the power of storytelling and education in transforming patient care.
• Overcoming Healthcare Barriers: Jaclyn shares actionable advice based on her own experiences, emphasizing the need for proper diagnosis, appropriate medication use, and comprehensive understanding from healthcare providers.

Remember, awareness and education are the first steps to advocacy and better healthcare. Tune in for more insights on reproductive health and leave us a review on Apple Podcasts!

Guest Bio:

Jaclyn is a vulvar lichen sclerosus patient advocate from Toronto, Canada. Jaclyn is the founder and director of The Lost Labia Chronicles, an evidence-based knowledge-sharing hub for vulvar lichen sclerosus information and support. 

She is on the executive board of Lichen Sclerosus Network, a non-profit organization based in the USA. 

She is currently enrolled in the EUPATI patient expert training program to improve her skills in patient advocacy. Jaclyn did her Ph.D. in philosophy of neuroscience at the Western University, in London, Ontario, where she evaluated the scientific methods and protocols used in cognitive neuroscience research to assess the reliability of the findings and ensure that the conclusions drawn from these studies are credible and trustworthy. 

Jaclyn is passionate about science communication, knowledge translation, and improving the quality of life of people with VLS through education and support.

Get in Touch with Jaclyn:

Website 

Instagram

Facebook

YouTube

Get in Touch with Dr. Rahman:

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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. I'm very excited to hear her story. Her name is Jacqueline Lanthier, and you may know her as the lost Labia chronicles on Instagram and her socials, but she is well of our lichen sclerosis patient advocate from Toronto, Canada, and the founder and editor of the lost Labia Chronicles and evidence based knowledge sharing hub for vulvar lichen sclerosis information and support. She's on the executive board of the Lichen Sclerosis Network, which is a nonprofit organization based in the USA and is currently enrolled the EU Pati Patient Expert training program to provide and improve her skills and patient efficacy. She did her PhD in philosophy of neuroscience at the Western University in London, where she evaluated the scientific methods and protocols used in cognitive neuroscience research to assess the reliability of the findings and ensure that conclusions drawn from these studies are credible and trustworthy. She's very passionate. I love her social media, and hopefully you guys in the notes will see everything that she does and you can follow her along. But welcome.

Jacqueline.

Hi. Thank you so much for having me. I'm very excited for this conversation.

Yes. So let's get right into it, Jacqueline. You know, like, I have so many lichen sclerosis patients in my office, and we always talk about sort of the, you know, the vulva being the organ that, you know, just gets, you know, just get the speculum in. Nobody's looking at it. Even gynecologists aren't really trained to look at it. You have to kind of get additional training to really understand, you know, what's happening in the dermatologic skin of the vulva. Tell me your journey. Like, when did you start noticing changes in the vulva? Did you start noticing what brought you? How did you get your diagnosis?

Yeah, so I pretty much started having symptoms in my early twenties. What I noticed was that they were very much related to sexual health. So a lot of discomfort with sex. Initially, I would call it discomfort. It didn't kind of cross into that realm of pain, but something felt off. And the more that I kind of grew, the more that discomfort kind of moved into that pain category. Probably when I was about 23. That's also when I started to tear with sex.

And that was definitely a big clue for me that something was off. You know, when I was chatting with my friends, I was like, why does nobody talk about the tearing? No one talks about the pain. Yeah. You know, everyone's like, oh, yeah. Like, my boyfriend and I, we had a group weekend. It was so awesome. And I'm like, uh huh. And pain.

And I'm, like, waiting. And I'm like, okay, this is just me. And so, as many people, I didn't receive proper sex education. And so my knowledge was that if something was wrong down there, it meant that I had either an STI or a yeast infection. And my knowledge of a yeast infection was that it had this big, white, clumpy discharge was very obvious. So I was lacking the discharge. So I thought, okay, I have an STI. So I didn't even go to a gynecologist initially.

I was going to STi clinics saying, test me for everything, because I was convinced I had an STI. And that's very. The panels just kept coming back as negative.

Right. And that's what a lot of my patients actually present with. But you know what's interesting? Sometimes that tearing is the first thing I'll notice on exam, and I'll tell a patient, like, have you ever noticed you tear or you bleed after sex? And they're like, oh, yeah, I thought that was normal, whatever. And I'm like, well, this can be, you know, sign up, like a sclerosis. Let's talk about it. And sometimes we do biopsies based on just like, this early sign. But, you know, it is. It is one of these things that.

That fissuring that happens, that recurrent tearing at the perineum. The opening, bottom part of the opening should be noted and looked at carefully. So you had all these sti checks.

And nothing came up positive, kept saying nothing. And it was funny, you know, there was a couple times I was, like, praying for an STI. I wanted a positive result because I needed to know that I wasn't losing my mind and that what was happening to me was real and it had a cause. So I almost wanted them to say yes, but they kept saying no. So eventually I was like, all right, let's try a gynecologist now. I got, you know, I saw many gynecologists, probably over ten, and I am okay.

Yeah. Yes.

Yeah. I was in CaNada, and so I would see gynecologist now. I think part of the issue was a Communication Barrier, so I lacked proper language at the time. So I wasn't coming in saying, my vulva hurts with sex. My Vulva is tearing during sex. I experience burning with sex. I was saying my vagina hurts. My VAgina hurts when I have sex.

So my presumption is that the gynecologist here is, okay. Vagina pain goes in kind of just like, you know, they see the vulva on the way into the vagina, but they're not really focusing on doing a vulvar exam proper. Yeah. So, you know, they'd go in, say, nope, Vagina looks great. You're probably really stressed out, you know, try some yoga, try some wine. I'm sure you've heard this from your patients. A lot of us get at least one doctor telling us to drink some wine or, you know, to find a partner with a smaller penis. As if I have x ray vision and can just, like, scan potential mates and see their size in advance, be like, nope, too big.

You're not coming near me. Perfect. Small. Yes, you. You know, and I was just like, okay. And so that kind of went on for years. And then I went to grad school, and as many people in grad school, you tend to move around a lot. And so I was never consistently seeing the same gynecologist either.

And I also do think that that may have been a problem, because I think that had I seen the same provider and they had the eyes on me, watching my vulva progress, that maybe they would have caught on that, oh, this isn't actually her norm. She didn't use to look like that. Grad school, you go to the clinic at the university, it's always a rotation of doctors, never the same person. You know, the same thing, you know, for over ten years, you're just stressed.

You're just stressed, this is over.

So I moved to.

This is insane amount of time, you know?

Right.

But what do we know? Seven to ten years on average, some of these diagnoses, right. It's really.

Exactly, yeah. And so, you know, I was like, all right, I moved to Toronto, Canada, and I found this center that was like a women's health center. Really seemed to focus on vulva. Vaginal conditions. And so I thought, oh, you know, maybe this is where I should be going. They seem to really focus exclusively on these issues. And so I went in full of hope. It was a walk in kind of based appointment.

So I went, like, before it opened there with my coffee, super anxious, first one in the doctor's room. Now, this doctor, in fairness, did give me a vulvar exam. Vulvar exam, vaginal exam, took my history. And then basically after the vulvar exam, said, yeah, there's nothing wrong with you. I can't do anything to help you. Literally said, I can't do anything to help you. Then as I'm about to leave, I grab onto the handle to turn and leave, and she goes, oh, well, you know what? You might have multiple sclerosis, but either way, I can't do anything for you. Goodbye.

Yeah, like, one thing to drop on a patient and then say, but also I can't do anything. Which, like, doubly freaked me out because my mother had multiple sclerosis growing up. So hearing that was, like, especially scary for me. And I was like, oh, my God, could this actually be, you know, one of the manifestations of multiple sclerosis? So suffice it to say, I left that day, and I said, that's it. I'm done with doctors. I'm not going to seek out help for this anymore because it clearly is a me problem. You know, I've had over 20 doctors look at me, and if they're all saying, I'm fine, then, like, the problem must be me. So I said, I'm just going to have to live with this.

And maybe that means never having sex again. Maybe that means, you know, all of these things. Not, you know, swimming, not this, not that. But I just have to manage this on my own. Then a couple weeks later, I went to my family physician. I just got a family physician, and I was seeing her about my low back. I have degenerative disc disease, and we're just talking like that. And I made an offhand comment about my vulva, and she said, wait, hold on.

Can you tell me a little bit more about your vulva? We'll go back to the low back, but I want to hear more about this. I started saying, well, it started with tearing and then burning with sex, and then it just moved into being a chronic state. So towards the end, it didn't matter if there was penetration or not. You know, I would just be burning and had fissures everywhere. And she goes, okay, well, as your family doctor, I would like to be the one to tell you nothing's wrong. Can I do an exam. And I said, yeah, go for it. I'm already here, so, you know, why not? So I go into the next room, you know, get into the stirrups, undress, all of that, and she walks into the room, and it's not even 3 seconds of looking at my vulva before she goes, oh, Jacqueline, you have lichen sclerosis.

And I said, what? Of course, because most patients have never heard of it before. Right?

Yeah.

And then she proceeded to do a more in depth assessment, noting things like, the clitoral hood is completely scarred over the glands. Your labia is completely agglutinated. It's the inner labia is completely lost. I'm seeing fissures all over the place. There's whiteness everywhere. She's telling me all this, and then she goes, okay, put your pants back on. We'll go in the other room, we'll debrief. You know, everybody's healthcare system is different, but public.

In Canada, you don't get too, too much time with your doctor. So basically, I got a really quick Kohl's notes. It's autoimmune. We think there's a hereditary component, can cause sexual dysfunction, can lead to bulbar cancer treated with steroids. Here's a prescription. I'll refer you to a gynecologist to follow your case. And I was out the door, so that was kind of my long journey into a diagnosis.

Yeah, it's a lot to take in, and I've done some podcasts and youtubes on volar health and lichen sclerosis. But this is a good point to say that it is. We do consider it an autoimmune disease that has an autoimmune component, likely a hereditary component, that there's something in one of the layers of your skin that your body considers as foreign. So you get these inflammatory reaction of the skin. So lichen sclerosis is an inflammatory skin condition that can lead to discredit vulva. Some people will get hypopigmentation. Things may present differently in women of color, so that's important to note. But that fissuring or adhesions or band formation is pretty common.

Lichen sclerosis, especially untreated for years, you can also develop, like the phimosis or complete adhesions over the clitoral hood that can, again, cause problems with sexual function. We think lichen sclerosis, for the most part, only affects the vulva, not so much the vagina, like another inflammatory skin condition known as lycoplanas. And for the most part, patients can and usually do respond to steroid creams, high potency steroid cream, but sometimes they don't. And we have to kind of get creative, and then sometimes we have to treat surgically some of the procedures related to lichen sclerosis, whether or not it's splicing of the adhesions, opening up the adhesions, or the fissuring, or even, like, reducing the clitoral phimosis so that sexual function can remain, you know, a prominent part of your life. And then the other issue is, obviously, if you're in pain because of the lichen, because obviously, if something is affecting the opening of the vagina, like lichen sclerosis does, and you're having pain with intercourse and burning and discomfort in general, a lot of patients then do secondarily develop pelvic floor dysfunction from it. So that's actually an important part. And not only, like, the discoloration and sort of the fusion of the labia can occur, and so the architectural changes of the labia happen and the vulva happen over time. So I think those are all important things to note.

And some people will get vulvar itching. A common scenario is someone who's had years and years of yeast infections, but never got a full diagnosis of a yeast infection. And then eventually someone looks at their vulva and says, wait, this is not yeast, this is ligosis. And commonly you get biopsies done to confirm the diagnosis, especially sometimes when it's an early case. I like to make sure that this is what we're dealing with. Dermatopathologist is, like, on my speed dial, so we can talk to them and see that's really important, too, because you want to make sure if the average person that owns a vulva has a 1% risk of vulvar cancer. You know, patients that have lichen sclerosis that goes untreated can be up to three to 5%, 4%, some people quote. So, fortunately, you probably didn't get all this information in your short visits.

And so probably a lot of it, you had to go do a deep dive, or what did you end up doing for yourself?

Well, initially I went home and went on Google, which is incredibly common, because you're told you have something that you've never heard of. I think there's, like, a natural curiosity that we have to want to know, like, well, what on earth did I just get diagnosed with? So went on Google. Now, this was probably. Yeah, yeah. And, you know, at the time, there wasn't too. Too much information that I could find. A lot of. It was very standard, like, yeah, we think it's autoimmune or it causes itch and pain.

I'm like, okay, well, I know that. I know what it causes. I know the symptoms. Like, I want to know a little bit more. One thing that I also did was I did Google image to see what it looked like. And that was a very traumatic thing for me to see how it progresses and what it can look like. And it also really stood out to me because during the clinical examined, I remember my doctor said, have you always looked like this? And that really struck me because I realized that at 31 years old, I couldn't answer her.

Yeah, you never looked?

No, because I literally never checked. I had no idea what normal anatomy should look like. I had no clue. And so I went from basically never having seen of all the or my own to seeing this display on Google, which for the most part is showing more advanced cases. It's not typically going to show you kind of mild, moderate, and give you a whole spectrum of how lichen sclerosis can present. It's presenting the really advanced cases. And so I remember that being really scary because the way that my head kind of functioned at the time with health anxiety was that is going to be me. Yeah, period.

If I don't look like that already, I'm going to end up like that. That's just how it's going to be. So that was really, really scary. And for the first bit, I just. I had nothing. I had no information because in Canada, to get in to see a gynecologist can take a lot of time. So my wait time to get into the gynecologist was nine months, which, when you're terrified, out of your mind, confused, have no idea how you should be treating. Because I was treating really poorly initially.

I was basically doing everything you shouldn't do. I was doing it because I had minimal instructions on how to treat. So basically, during that nine month wait time, I accumulated a lot of questions that I wanted to know, that I wanted to eventually ask the gynecologist. Yeah, there are some phenomenal family doctors out there that are so on the ball with diagnosing and managing lichen sclerosis patients. So it's nice to see more, more and more gps and primary care physicians kind of showing up at these big conferences to learn more.

Absolutely. Okay, so you're doing this deep dive, going down rabbit holes, wondering what's going to happen to you, probably getting more anxious in the process. And what happened when you actually got to the gynecologist who was supposed to.

Help you or who helped you? So that gynecologist in some ways was great, and in other ways not so great, great in the way of compassion. So I basically had, I call it like my scroll because like, I had so many questions, it was like, I don't even know if fit on a traditional paper. It was so long. I was like, I'm sorry, but like, you know, I've had nine months to just ruminate and wonder and worry. So at this point, I have a lot of questions and they're questions that I couldn't find explicit answers to online, even by going to, like, pubmed, Google scholar, you know, a lot of lifestyle based questions, it was really hard to find, find answers to. And so he was really good, him and his nurses, in terms of providing really compassionate care. So I was crying and they were both like, I had him on one side and the nurse practitioner on another, like, drying my tears with, with Kleenex. So, you know, they were very sweet in that regards.

But I think, like, the knowledge, the deep, deep knowledge about lichen sclerosis was maybe lacking a little bit. And it seemed to be like a little bit more of a superficial knowledge, but definitely gave me enough to kind of be like, okay. But at this point, the symptoms had improved despite me going like completely rogue with a steroid and using it improperly. Still going to settle down miraculously.

Yeah, you probably didn't even get a chance to get the proper direction and like pre soaking and things that we tell patients.

No, no, I definitely didn't get any of that. But furthermore, it basically, like my little tube said, use daily. And I was like, use daily? Well, that's pretty vague. That's very vague. And so I was thinking, right, like, I use my SPF daily, but I put it on more than one time, right? And then, so, like, you know, with SPF, it's like, okay, but like every 2 hours or so you're putting on more spF. So not only was I not soaking, not rubbing it in, I was using my clobbatasol ointment ultra potent steroid. I was using it like six times a day sometimes. I had no idea.

And I would squeeze a ton of it out.

Oh, wow.

And then if this was my vulnerable palm of my hand. I know, I know, it's horrific. Like, once I, like, educated myself, I was like, dear lord, how I didn't have side effects from this, I don't know that I would take that big glob, and I would just slap it on and go on with my day. So I had that heavy clavidazole ointment just sitting on that top epidermal layer.

Yeah.

Again, how. I didn't have any kind of, like, overuse reactions.

Yeah, I mean, some of it. I think if it's on the lichenoid skin and it's beneficial, but if you're putting it on non lichenoid skin, you worry about like that.

Right, right.

So. But in general, like, you're, you know, what we tell patients is, you know, like, pre soak in some warm water beforehand, especially for the really tough, and then rub it in like, 90 seconds. And it's once a day usually, and it's, you know. Yeah, and. And then.

But I was doing, you know, like, six.

But to your point, like, nobody's, you know, educated you on that, so that was unfortunate. So. So you probably.

And when you're symptomatic, by the time you got there, it did. It did. And he was like, this is pretty much in remission, so please stop using it every day and just drop down to a maintenance protocol of twice a week and like, okay, cool. Again, no one told me there was no tapering given. It was just use this daily until you can see a gynecologist. Yeah, but they, you know, gynecologists in Toronto could be over a year. So it's like, okay, so do I use it daily for over a year? I guess I do. So, yeah.

He was like, nope, you go straight into maintenance for you. And I was like, okay, okay, cool. And during that time, I wasn't just using clobatasol. So I did two things really shortly after my diagnosis. One, I sought out a sex therapist to help with the mental health aspect of processing this diagnosis, especially since my symptoms fell more into that sexual health category versus, like, the itch category or something like that. So I really knew, like, okay, I need somebody to help me through that. And then the second thing I did was I got a pelvic floor physical therapist because I was mindful that, you know, sexual health symptoms have both a mind and body component, and I wanted to address both in addition to healing the skin with the steroids. So I also was seeing, you know, a pelvic floor pt.

So without knowing it, I was kind of doing all the right things without anyone having actually told me, you know, you should be doing these things. So I think, you know, and working with a sex therapist was really, really pivotal to my healing because she really helped me through those first four to six months where the health anxiety was at its absolute worst, because, again, the vulvar cancer piece was presented completely without context. This diagnosis increases your risk for cancer by how much?

Yeah.

By 1%, by 50%, 90%. I don't know. Are there things that I can do to reduce that risk, such as using topical corticosteroids and none of that's presented. So when you tell somebody you have a thing that could give you cancer for a lot of people, we're going to run with that. Yeah, you got to give context. And again, giving context can be like two sentences, you know, like, I mean.

That'S the whole story with the whi that ruined women's health and menopausal hormone therapy.

Yes, exactly.

Four cases in 1000 versus five cases in 1000, but was presented as 30% increase or whatever. Right. So it's like not even, you know, what you would consider this great, significant amount. But it's all context. Absolutely, yeah.

And then. And then that strikes fear and then.

Exactly. And so that education piece is really crucial, I think, for so many patients. You know, when we sit and we talk to them about, you know, the lifelong diagnosis that we don't have a cure for this, but we know that you can keep it in remission and all those things, that's very important. And you said, what I always say when I talk about sexual medicine treatment is that it is a biopsychosocial approach. So you can attack the bio, which is the lichen and the pelvic floor, all you want. But what I have found dealing for so many years with patients who have sexual pain, you know, vulvar dermatoses and things that have really, you know, altered them in so many ways from a trauma perspective. Right. Because in the medical field, especially gynecology, we're a field that creates way too much trauma for our patients because we just don't think about some of the things we say or do for them.

Right. And so I struggle a lot when I'm able to get a patient in remission with LS or LP or when, for instance, you know, someone's genital urinary syndrome, menopause symptoms are under control or I've removed their vestibule and they don't have any nerve proliferation of the vestibule anymore. But the fact that they've suffered in pain for years at a time, really is then the absence of pain is not always pleasure, because then you don't even think that you deserve pleasure. You don't know if you should get pleasure. You don't know if pleasure is going to be part of the equation. So you have to rethink a lot of things. Right? And I think that's why sometimes that's why I take pictures for my patients of Olva and like, look how your voma looked when I first saw you. So that can be very powerful, and showing them with a mirror can be very powerful.

But it's absolutely true. I mean, I think that sex therapy component is so huge and even just health anxiety therapy, because of the stuff that you go through as a patient, it's very important to address those issues.

Yeah, 100%. And I think that's what ultimately kind of motivated me. As I healed and became stronger and confident and felt like I had the energy and capacity, I realized that I wanted to redirect that energy into helping others with vulvar lichen sclerosis so that they got the proper education from the beginning, so that they understood the context of some of these things, like steroids thin the skin. Well, you know, that's a complicated thing and it's not as simple as, yes, they do. No, they don't. What's going on? And for me, it was also a question of a lot of my grad school work was thinking critically about science and about scientific papers and about the findings that we're saying, like, hey, this supports this, you know, this evidence supports this claim. And really thinking critically through that, is this, is this not, and how do we disseminate that information in a way that others can understand? And so that kind of led me into creating the lost Labia Chronicles, which started as a blog, but didn't last long as a blog. I mean, it's still a blog, but it's also now YouTube videos and ebooks and webinars and, you know, speaking events and all of these other things.

Because my philosophy is really to disseminate information through a bunch of different media so that different learning styles can, you know, adapt and take what works for them. Some people are incredibly visual and, you know, black blog post isn't going to do much for them. Whereas a video where I actually have like a model of a vulva and I'm moving things around and it's more dynamic, that works well for others, you know, and there's so many different things to take into consideration. So for me, it's always being mindful of not just presenting the information in one way, but presenting it in many ways.

Yes, absolutely. And I think that is critical. I think the kind of advocacy work you do, and others that I've spoken with, you know, that have suffered through these conditions and kind of like, you know, have a newfound passion to ensure that others don't suffer in the same capacity. So I think that is, you know, wonderful, actually. And the lost Labia chronicles is awesome. I mean, because, I don't know. Did someone say your labia look like they've disappeared? Is that why? Because you know, that what, that's happening much?

Yeah.

The inner labia minora sometimes regress or get resorbed enough that it just looks like sometimes the labia majora only. So some people do feel like their life will disappear.

So. Yeah. Yeah. And that's often, like, what we get told. And not just in my experience, but being a patient advocate, what I see in the patient community is that that loss or change to the labia minora is incredibly profound. It creates a lot of grief. It creates a lot of anger, a lot of frustration. You know, I mean, we grow up, you know, that our hair can turn gray.

We look at our grandfathers, our grandparents. We see it's gray. We know that faces wrinkle. We see that over time. We know that certain parts of our bodies will change as we age and move through life. But to full on lose a body part, especially, you know, a part that we don't talk about, that can be really shocking. And I know that for me, it was really tied into a lot of self blame because I kept thinking, because I, like, I lost my labia because I wasn't being proactive. Had I taken a mirror and looked at myself when I was having symptoms, had I noticed I the change to the labia, maybe I could have advocated harder for myself, gotten diagnosed earlier and halted the progression.

And so I kind of felt like it was my fault that it took so long to get diagnosed and that I ended up with that loss. And again, I see that all the time in the community. And the thing is, it's not my fault and it's not anybody's fault. Right. But that's how a lot of us feel. And so I know that that loss of the labia can be really, really profound. So calling the blog, you know, the lost Labia chronicles was actually a representation of my healing that grief, and my kind of taking a more empowered stance with respect to, you know, the journey that my vulva had been on.

No, that's beautiful. I mean, that's very profound, actually. And I think that that is, you know, something that so many of my patients feel like just that, you know, everything gets you know, the architecture can train. I mean for some people it's very minor, right. They might just have a little fissuring, a little hypothesis, right? It's a full range of disease depending on, some of it can be dependent on where you find it. Some of it is your genetics, some of it is, you know, things we have no, no idea about because we don't do enough research on this area. And so I think that, you know, just, just coming to that and sort of using that term to more empower yourself is, is wonderful because that's pretty much, you know, what you have to do in order to get, get past the healing that you've talked about. So what's in your, like, tell our listeners everything that you're doing to, you really endorse, you know, education or lichen sclerosis, vocal lichen sclerosis.

And also tell us about the lichen Sclerosis network. I haven't had them on yet, but I, I love what they do as well.

Yeah, of course. So I think one of the biggest kind of education things that I do is I have a free ebook. It's over 100 pages. Over 40 peer reviewed journal articles were consulted. And putting that together, I do revise that every single year for any new research, new insights that have come out so that it's constantly being updated. It's not just education. It's also, you know, advice on building a support team, talking about sexual health, talking about mental health, sharing resources, all of these things. And, you know, I put so much time into that every year.

It is free. It's something that I'm going to always offer for free because I want, I think that everybody at a baseline should get that kind of knowledge and support. So that's a big one. Then of course, I have my YouTube channel. I also, and I will talk more about lichensklerosis support network shortly. But I also do content creation for them too, now. So I also blog for them and do YouTube videos for them as well. I have webinars on stress, the relationship between stress, the vagus nerve and lichen sclerosis.

I have an ebook on how to kind of navigate the holidays and events with lichen sclerosis. And then I'm working on another book with the pelvic floor PT. So that's going to come out soon. That's going to kind of focus on dilators and sexual pain. I also do kind of community outreach work. I host in person support groups, usually across Canada. Sometimes if I'm traveling for a conference, I'll try to set one up as well. I also do education for providers.

So, so far I've done education at pelvic floor clinics and sex therapy clinics. And that really involves giving like a kind of primer on lichen sclerosis, that kind of general overview and then sharing from a patient perspective a lived experience. This is what I go through. Here's what I've learned from the LS community. And then I also go over things like how to talk to patients with lichen sclerosis terms, maybe to avoid affirming ways to say things. Again, guidance on the how to be honest with your patient, but maybe not terrify them. So, for example, instead of saying, this can lead to vulvar cancer, say there's a two to 6% risk of developing vulvar cancer. That risk is slightly higher than baseline, but we have good studies showing that with the proper and consistent use of topical corticosteroids, we can reduce that risk significantly so that it's more in line with baseline.

Just slight modifications like that can really help create an affirmative kind of patient experience. I do talks at conferences as well. I'm partaking in many different research projects, either as a co lead or patient representative. And I also do one on one peer support calls for folks with lichen sclerosis that can be a patient. Sometimes it's a pain. So often I get parent whose little girl might have lichen sclerosis, and they kind of want to chat through that. And then I also do facilitate virtual support groups as well through lichen sclerosis support network. So that was a lot.

Full time job and more.

Yeah, yeah, yeah. Oh, and then I am also. Yeah, that upati patient training program also teaches you all about, like, you know, different skills to be a good patient advocate, working with pharma, working with different stakeholders, learning about pharmacokinetics and all of these things. Genomics research, you go through it all, how to partake in health technology assessments, basically all of that. So, yeah, I definitely put a lot of time and energy into the community, that's for sure. And then, yes, I'm also on the board for Lichen Sclerosis Support network, and that is a nonprofit based in the United States. They do kind of education and support as well. I create content for them, too.

So I do blogs and videos for them over there, and they do virtual meetups as well. So I'm also kind of co host those, too. And then they're really big on doing these big holistic healing summits where they bring different experts from different medical fields to talk about different aspects of living with or managing lichen sclerosis. So those are offered kind of yearly, and those are a big offering to the public.

That's wonderful. Well, I think there's a lot out there now for patients. Maybe not when you were going through it, obviously, you know, things are changed and evolved with social media and I think through the pandemic, people finding their voices. So, yeah, I think clinicians that someone that treats this, I hate that you suffered through this, but I love what you have done with that. And I hate that you had the trauma from the medical field, but I love that you're, you know, kind of reimagining it in your head to help others now. So I think that's wonderful. What would you give as advice to someone, you know, with a new diagnosis or, you know, like that, or someone that knows they have something going on as a patient, but they're not being heard and so that, you know, you're not getting sort of the care you need. How do you go about pivoting that?

I'll answer both of those. I'll start with, you know, what I would say to a newly diagnosed person, and first and foremost, that would be that you are going to be okay. This can be incredibly scary. In the beginning, it can feel like a lot, and it is. But in time, you will acquire the tools to manage your condition, get things under control, and get back out there and live your life again. The other thing that I would say is try not to overwhelm yourself and go too far into doing all of the things, doing all of the research, because that often can have the opposite effect. Right. We think we're doing our bodies good, but when you're literally on Google, like, it's a full time job and you're just reading and reading and in the Facebook forums and reading patient experiences, if you find yourself overwhelmed, you know, do that little mental check in, and if you're overwhelmed, take a step back.

Yeah, there's a lot of great information out there these days. It's going to be there. The YouTube videos are not going anywhere. The blog posts are not going anywhere. Consume the information at a pace that feels right and safe for you. That's going to look different for everybody. But take your time. The treatment piece is the one that's going to matter a lot initially.

You can build on that as you go and as your mental health starts to settle a little bit for people that are kind of in the position where I was in that first ten years where you're like, I know something's wrong, but I'm not going anywhere. First and foremost, definitely know your anatomy, know your vulva, say it's your vulva, and be able to communicate what parts of the vulva are, you know, experiencing what symptoms. I usually tell people to make a little, like a one, a one page paper documenting what they've been going through, keeping it incredibly precise. Bullet points left labia minora feels like stinging. Suspected fissures. Tried x medication, did not work, so on and so forth. The other thing is, finding the right provider is important, too, being mindful that not all gynecologists, not all dermatologists are made the same. Not everybody has a special interest in vulvarodermatoses, and if they don't, a lot of the time, these things can be missed.

So sometimes that does require doing a little bit of extra digging. Lichen sclerosis support network does have a LS provider directory, and a lot of those people are kind of folks that take a special interest in volbar conditions. So potentially looking through that, it is an international database, so folks can kind of search for that and see if they can find somebody that might be a little bit better suited to see what's going on. Again, I always tell people, like dermatologists, too.

No, I was saying I didn't realize it was an international database because I'll get a lot of DM's.

Oh, yeah.

People in the UK or in Europe, and they're like, well, what about us? Like, should I go to? So that's good to know. I can actually refer to your normal work.

Yeah, yeah, I know. Absolutely. It's completely international, which is a really great resource. Right. Because anyone on there is probably going to be a little bit more likely to be able to make these tricky diagnoses. And I always tell people, too, you know, dermatologists are great. Don't forget that dermatologists matter in this field, too, because at its core, like, lichen sclerosis is a yemenite condition. We think gynecology because of the part that the skin is on, and then that can intersect with sexual health medicine and urology.

Right. So there's all these little kind of fields that kind of coexist and intersect. But again, it's really about finding a doctor that knows is familiar and comfortable in diagnosing and treating vulvar conditions. I would also say, do not settle for a diagnosis without a clinical examination. At the minimum, the amount of people that I have heard that were diagnosed with a vulvar condition over the phone. Too many. And the thing is, you can't do it. I will die on this hill.

You can't diagnose a vulvar skin condition over the phone. You need to look at the skin, because all of these conditions, I mean, just think about lichen, erosive lichen planus and lichen sclerosis alone, there's so much overlap in the symptoms. I mean, heck, I could, I could begin like, there's probably 20 diagnoses. I mean, pain and itch.

Yeah, exactly.

Are literally, you know, a symptom of almost every vulva, vaginal condition that I can think of, even though. And you know, how I. Itching for some patients. Exactly. Exactly. Right. So if I'm on the phone with you and I'm saying, hey, like, my vulva's itchy and like, it looks reduced. Well, again, what my perception as a non clinician of what's red on my vulva might mean something different to me than it does for you and for you.

With the trained clinician's eye, you might be looking for different types of redness, different types of, you know, all of this. So it's just like that can't be communicated over a phone. So if you're having like a chronic vulvar issue, at minimum they need to be examining the vulva. And that might mean you need to be a little bit uncomfortable and advocate for that. Ask them explicitly, please check my vulva. And by the way, that includes the clitoris, so please check that too, because so many times they do not check the clitoris. I know so many of us on social media, like Doctor Rubin, were all like, guys, you have to check it. But yeah, that does mean getting uncomfortable and asking explicitly for those types of examinations.

And it should be just, you know, that should be something that your clinician explains to you before because then we teach that at issue. Wish all the time. Right? You know, retract the clitoral hood. You know, you have to just sit with the patient, right. You have to let them know that this is going to be happening, too. I mean, to the point of like when I was a resident, you know, 15 years ago or whatever, it was like, you know, we weren't even told to look, you know, we don't go near the clitoris because, you know what I'm saying? And it wasn't like until probably in the last ten years that we've, you know, really been pushing for evaluations through Doctor Goldstein and Rachel Rubin's work. Erwin. Ghost.

Exactly.

But anyway, I agree with you, with all of that. That's what I always tell my patients as well, the people that, you know, seek advice from me, from other countries or cities or whatever the case will be. And there are some, you know, you guys have your clinicians on your lichen sclerosis network. There's ISSBD to, the International Society for the Study of ovirovaginal Diseases has both dermatologists and gynecologists that have a special interest in that. And, you know, for those of us who attend that meeting and get additional, you know, training and lectures from them, there's the ishwish website and member lookup, the International Society for the study of women's sexual health. So those are, you know, two great areas that you can look to see if there's a clinician and provider near you that can help you. So that's www.isswsh.org or www.issvd.org.

Pressed with the ish wish one that you said that, I was like, wow, you practiced that one.

Advocates come to ishwish, so you should come. Actually, we love having our patient advocates at ishwish this year. Yeah, I would love that in Atlanta, so.

But yeah, I'm hoping to be in attendance for that one.

Oh, wonderful. We'll connect on that then. So anyway, I really appreciate you being here, talking about your journey, very personal journey, and all the advocacy work that you're doing. And I love everything that you are doing for patients and, you know, people that, people that have vulgas and just don't even think about looking down there sometimes. You know, we just, we need to make it more of a thing that we explicitly tell patients and, and involve our owners to do. So I appreciate everything you're doing and thanks for coming on my show today. Thank you listeners for everything, for listening and turning tuning in today. My name is doctor Samir man.

I'm hear what gyno girl presents, sex, drugs and hormones. And remember, I'm here to educate so you could advocate for yourself. Please turn in next week for another episode and we'll catch you back then.

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